Abstract Workshop On Psycho Oncology Alleviation.7[1]

ABSTRACTS

Workshop on Psycho-Oncology:
Alleviation of Fear, Frustration and Sense of Loss
Through Non-Pharmacological Treatment Modalities

desire to protect his or her patient. In the article ‘‘Setting Goals to
COMPASSIONATE HONESTY Maintain Hope,’’ Von Roenn and Von Gunten provide a strategy to
Charles L. Loprinzi, MD*, Lidia Schapira, MDw , Timothy Moynihan, direct physicians in their approach to honest, yet hopeful, disclosure
MD*, Gregory P. Kalemkerian, MDz, Charles von Gunten, MD, of a poor prognosis. Teaching patients to reframe the object of their
PhDy, and David Steensma, MD*. *Mayo Clinic, Rochester, MN; hope, and setting realistic, short-term goals allow the oncologist to
w Massachusetts General Hospital, Boston, MA; zUniversity of Michi- engage in a dialogue that focuses on life, instead of avoiding the topic
gan, Ann Arbor, MI; and yCenter for Palliative Studies, San Diego altogether.2 ‘‘Sign-posting’’ provides valuable clues to a patient and
Hospice, San Diego, CA. his loved ones that they have entered into a new and perhaps
unfamiliar or frightening territory. As noted by the authors, if a
person is driving on a highway, it is appropriate to have warning
INTRODUCTION signs to alert drivers as to when the exit is approaching. In a similar
Oncologists are actively involved in assisting patients in manner, patients and their loved ones need some warnings from
making difficult decisions, at the time of initial cancer diagnosis the doctor that signal that a change has occurred or that the end is
and for months or years thereafter. Such discussions involve near.
imparting the news of a new diagnosis of cancer or a recurrence, Smith3 provides a clear and logical strategy for helping
providing results of day-to-day tests or staging scans, and clarify goals and plans of care in the piece entitled ‘‘Tell It Like It
addressing prognosis, all of which must be done in a compassionate Is.’’ He advocates the use of a written document in which the
and sensitive manner. Cancer specialists need to help their patients doctor and patient record important information about the disease,
learn how to talk about difficult and meaningful subjects such as intention of treatment, and emergency contacts. This straightfor-
personal values, hopes and expectations, and to share the task of ward approach can be adapted to other situations and serve as a
making decisions about treatment and goals of care. Typically, the model for clarity and partnership between patients and their
most difficult discussions are those that address the lack of effective professional caregivers.
medical treatments. ‘‘Caring for Dying Patients: What is Right?’’4 describes the
The Art of Oncology: When the Tumor is not the Target is consequences of the all too familiar situation whereby patients with
the title of a section of the Journal of Clinical Oncology, which was advanced incurable cancers are not told the truth about their
initiated with the first issue of this millennium.1 One of the condition. They are sent home ‘‘to try to get stronger so that they
overriding themes of this section of the Journal of Clinical Oncology can become fit enough to receive chemotherapy.’’ The frequent
is to showcase the importance of honest disclosure, coupled with consequence of this scenario is that an ill patient comes back to an
the therapeutic effect of compassion. The section offers narratives emergency room with a life-threatening event. Without the patient
and didactic articles that provide useful advice and highlight the and family’s appropriate understanding of the situation and
opportunities for establishing healing connections between profes- possible complications that might occur, they are left to struggle
sionals and patients. A substantial number of the articles published alone without the professional guidance required to sort through
in this section of the Journal of Clinical Oncology address difficult treatment choices. This raises 1 of the central issues of the
‘‘compassionate honesty,’’ and these will form the primary basis patient-oncologist relationship, namely to ask and consider
for the current discussion. whether the one and only business of this relationship is the choice
and application of treatment. To be ‘‘fit for chemotherapy’’ implies
that chemotherapy is what the patient is ‘‘fighting for.’’ Should
TELL THE TRUTH chemotherapy be viewed as simply an assistive device to allow life,
Conversations about expectations of recovery, time frames, or as a priority in and of itself? At times, a conversation with a
and hope for a normal future are extremely important for cancer thoughtful oncologist can open up new avenues for relief of
patients and their loved ones. A common sentiment among many symptoms through palliative care, allowing the patient and family
oncology professionals is the need to nurture hope in their patients. to exert more control over future events.
Many colleagues are afraid of causing harm by forthrightly On another practical and perhaps less emotional level,
addressing issues of prognosis when the outlook is grim. This is readers can learn from ‘‘Treatment Decision Aids’’ about how to
only normal, as is the desire to protect patients from harm or discuss the pros and cons of the use of chemotherapy in the setting
disappointment. It is easy to imagine situations where the doctor of advanced or incurable cancer.5 In this article, Leighl discusses
means well and avoids addressing important issues out of a genuine how to help patients weigh potential treatment benefits and risks,
so that they can be better informed and ready to participate in a
shared decision-making process.
Funding Organization: Department of Health and Human Services, Pediatric oncology poses unique challenges for doctors who
Palliative Care Host Organization: Ministry of Health, Nicosia, must communicate with both patients and their parents, and may
Cyprus, May 8-10, 2009. need to balance and integrate different perspectives. Two pieces
The opinions or views expressed in this supplement are those of the
focus on compassionate honesty in pediatrics: ‘‘The Day One
authors, and do not necessarily reflect the opinions of the journal
Talk’’6 and ‘‘Tell the Children.’’7 The first article stresses the
editors, the DHHS, NCI or Wolters/Kluwer/Lippincott Williams &
Wilkins. importance of providing sufficient information and building a
Scientific Organization Partners: American Cancer Society, Interna- respectful and supportive partnership between oncology profes-
tional Union against Cancer, Oncology Nursing Society, Interna- sionals and families. The authors favor a planned and yet flexible
tional Network for Cancer Treatment and Research, SUVAK— approach from ‘‘Day One,’’ cautioning clinicians to take their cues
New Hope in Health Foundation, Turkey, International Agency for from parents and families and to be as clear and compassionate as
Research in Cancer (WHO). possible. They also address the need for the pediatric oncologist to
Copyright r 2010 by Lippincott Williams & Wilkins relay information directly to his or her patient, and remind us that

22 | www.jpho-online.com J Pediatr Hematol Oncol Volume 32, Number 1, January 2010

J Pediatr Hematol Oncol Volume 32, Number 1, January 2010 Abstracts

well-informed children and adolescents can better cope with illness was told she was receiving chemotherapy, thus boosting her belief
and treatment. The second article, ‘‘Tell the Children,’’ explores the that everything possible was being done; it is possible that this
difficult topic of informing children that death is imminent. Using understanding helped her to die peacefully at home. Although
2 case vignettes, the authors compare and contrast different most oncologists would be uncomfortable with this deception,
approaches. In one case, parents forbade doctors and hospice the author’s discussion of the situation reflects a thoughtful and
workers from talking about death, both with the dying child and compassionate individualized approach concordant with the
his sibling. In the other, a family invited open communication and patient and her family’s stated wishes. Those who wish to read
included a healthy sibling in the final hours of the dying child’s life. more on the protective mechanisms commonly used by patients
The authors’ clear message is that developmental theory and facing death will appreciate Rouseau’s article, ‘‘Death Denial,’’
research confirms both the importance of honesty and the ability of which explicitly addresses the useful role of denial in patients with
children to accept death. Although honest recognition of a child’s advanced cancer.13
approaching death can be unbearably sad, progress in pediatric In ‘‘But Doctor, What Have I Got to Lose?’’ Harnett and
palliative care now allows patients and their families to receive the Moynihan14 point out the important trade-offs a patient must
coaching, assistance, and support they need through end of life consider before trying chemotherapy when the chance of benefit is
and, for families, into the period of bereavement. quite low. If the possibility of response is low, the risks of
treatment-related toxicities need to be carefully discussed and
NECESSARY COLLUSION considered. Such toxicities include premature death, reduced
quality of life, and loss of opportunities to accomplish the
One of the most controversial pieces in the Art of Oncology
series is ‘‘Necessary Collusion: Prognostic Communication with important tasks that often come in the waning days of one’s life,
Advanced Cancer.’’8 Helft, an oncologist and ethicist, argues that such as planning for physical and psychosocial needs of loved ones.
as a physician’s responsibility is to provide hope for patients, Five specific directives, first proposed by Ira Byock in ‘‘Dying
sharing bad news may sometimes interfere with this objective. He Well,’’15 are reiterated in this piece, including the need for dying
patients to tell their family and loved ones: ‘‘please forgive me for
suggests that many patients really do not want to hear bad news,
doing those things that I have done to you that were not right, I
despite asking about what is going to happen to them, and argues
that patients often want the physician to portray all news in the forgive you for what you might have done to me that was not best,
best possible light, even if it means distorting or withholding thank you for all that you have done for me, I love you, and
certain facts. In a commentary, Kalemkerian points out that The goodbye.’’
argument made by Helft in favor of ‘‘necessary collusion’’ in the
discussion of prognosis between patients with cancer and their
oncologists is predicated on the presumption that the primary goal HOW TO DELIVER BAD NEWS
of oncologic care is to maintain hope. If this was the case, then it Recognizing the central and recurring theme of breaking sad
would be difficult to argue against such an approach. However, the news to patients, the ‘‘Art of Oncology’’ features many articles on
primary goal of oncologic service is to care for patients with cancer this subject. They vary considerably in tone and content and
in a comprehensive manner, with appropriate attention paid to include moving narratives and evidence based guidelines for
their physical, psychological, and practical needs. Helping patients practice. One of the earlier articles in the series, entitled, ‘‘Giving
maintain hope is but one part of this, not the core principle.’’9 Bad News to Cancer Patients: Matching Process and Content,’’
Oncologists should understand how to have a conversation with discusses the angst experienced by doctors when giving bad news to
patients that encompasses more than hope for cure. This article and patients, especially when it is unexpected, or the patient or family is
its counterpoint reflect conflicting opinions among oncologists both not ready for it.16 The authors provide suggestions to help
about core professional values, and the duty to inform patients, to clinicians understand the task, process components, and deliver
allow them to make informed choices based on an accurate information in a compassionate and effective manner.
representation of their medical condition. The SPIKES mnemonic (setting up the discussion, delineating
‘‘Concealment of Information in Clinical Practice: Is Lying the patient perception of the situation, obtaining an invitation to
Less Stressful than Telling the Truth?’’ may help explain why provide information, providing the knowledge of the situation,
physicians do not always provide realistic information to patients. assessing patient emotions, and summarizing the discussion while
The article presents data from behavioral research that documents setting goals) was introduced by Baile et al17 to outline a method of
the stress experienced by those who tell the truth about poor delivering bad news. ‘‘Discussing Bad News in the Outpatient
prognostic information. The authors conclude that it is often easier Oncology Clinic: Rethinking Current Communication Guidelines’’
for physicians to lie to patients than to tell them the truth.10 further elaborates on the topic and identifies 3 additional aspects of
these discussions as they occur in real life.18 First, that physicians are
often not able to plan ahead of time for all ‘‘bad news’’ interactions
DON’T GIVE UP ON ME because many times, there is no advanced warning that bad news
There are patients who want to be treated ‘‘aggressively’’ needs to be delivered. Bad news may be a part of almost any
despite understanding that such treatments may cause more outpatient or inpatient oncology encounter, which may not allow an
suffering and have little chance of improving quality or length opportunity to set up a bad news discussion with a dedicated room,
of life. To oncologists, the word ‘‘aggressive’’ denotes intensive extended time, or all patient-desired family members present. Second,
treatments that are almost invariably accompanied by adverse bad news interactions often do not focus on one central piece of
effects and, in the setting of advanced cancer, may well add to the information, but rather involve multiple aspects. Finally, bad news
burden of symptoms experienced by the patient. For some, the use interactions are rarely dyadic—more frequently they involve a
of ‘‘aggressive treatment’’ signifies that everything possible was clinician, patient, and at least 1 relative or loved one. Clinicians
done to offer the patient a chance to extend his survival. In the need to know how to acknowledge the patient and family together
powerful poem, ‘‘Can You Cure Him for the Baby’s Sake?’’ Mehta and, with the patient’s consent, to balance each person’s specific
describes a patient and his partner who persuade a physician to needs for information, attention, and support.
administer chemotherapy when most would consider such treat- An early piece in the ‘‘Art of Oncology’’ series addresses the
ment futile.11 In an accompanying commentary, Fetting discusses frequently asked question, ‘‘Doc, How Much Time Do I Have?’’ by
the moral distress that such demands bring on oncologists, other describing a role play in which experienced physicians were asked
members of the healthcare team, and society. A variation on this to address this question in a simulated clinical encounter.19 The
theme is described in ‘‘Another Infusion of Hope.’’12 This describes physicians’ responses were videotaped and transcribed, portraying
an Italian patient who asked not to receive bad prognostic the different ways that experienced clinicians respond to this
information and wished to continue to receive chemotherapy, question. This piece led to a subsequent article in which Schapira et
leading her physicians and family to administer an intravenous al20 argue that this question should be addressed with another
vitamin to her while she was being cared for at home. The patient direct question back to the patient asking them why they wish to

r 2010 Lippincott Williams Wilkins www.jpho-online.com | 23

Abstracts J Pediatr Hematol Oncol Volume 32, Number 1, January 2010

know this information. By exploring the patient’s concerns and ethical dilemmas, particularly in the United States, where legal and
fears and addressing them explicitly, conversations with patients cultural forces favor complete disclosure and mandate that patients
can be greatly enriched. be given informed consent for treatment.
One of the more popular articles in the Art of Oncology A candid and inspiring piece, ‘‘Surprised by Hope,’’
series is ‘‘Just Say Die.’’21 The use of indirect language and discusses a situation in which a patient specifically told her
euphemism, such as ‘‘end of life,’’ and the avoidance of the words oncologist, after she had received a realistic assessment about her
‘‘die’’ and ‘‘death’’ are all too common in our verbal communica- cancer and treatment options, that she wanted her oncologist to
tions and published literature. In making his point, the author asks be more optimistic about her case.36 This patient, appropriately
whether doctors should talk about ‘‘beginning of life care,’’ instead informed, ‘‘had her eyes wide open, but preferred to wear rose-
of ‘‘infant care.’’ colored glasses.’’ The doctor responded by avoiding confrontation
The ‘‘Power of Silence’’ discusses the usefulness of allowing and honoring her patient’s clear request.
silence when giving patients bad news.22 This piece recounts a
situation where the physician team sat in silence with a patient and
family for a prolonged time—30 to 40 minutes. For many of us, HOW GIVING BAD NEWS AFFECTS THE
even 30 seconds may feel like a century and a minute or two ONCOLOGIST
requires focus and discipline; in the right setting, however, silence Oncology professionals are personally affected by caring for
can have a marked therapeutic effect. patients on a daily basis with life-threatening illnesses who face
‘‘The Sentinel’’ was written by an otolaryngologist who loss, disability, and death. In ‘‘The Narrow Path,’’ Steensma
describes a patient with anaplastic thyroid cancer.23 When the illustrates the fine line that physicians need to walk to remain
patient asked his physician, ‘‘What will kill me? What will emotionally close to their patients while still maintaining a safe
happen?’’ the physician had difficulty responding; he found himself distance from their suffering.37 He also describes the serious
unable to tell the patient that he might exsanguinate from an acute consequences of falling off to either side of this narrow path.
carotid artery rupture. A commentary on this article entitled ‘‘Fellow Suffering’’ was written by an oncology fellow in
‘‘Missed Opportunities,’’ by Moynihan and von Gunten,24 reminds New York City at the time of the 9/11 terrorist attacks.38 The
us that the situation described in ‘‘The Sentinel’’ demanded a author notes that she was not affected as much by this tragedy as
resolution. If the specialist was unable to answer the patient’s she might have expected, because she had already seen such
questions, then perhaps a palliative care team could have helped. extensive human suffering and so many tragic consequences during
To this end, it is not necessary for one cancer specialist to provide her months on the oncology wards. The author also relates that
all services, as long as he or she delegates important aspects to fellows can provide mutual support and advice by more openly
other colleagues and together they function as a multidisciplinary discussing their experiences with each other.
team assembled to meet all of the patient’s needs.
The Art of Oncology series includes several articles that
address the difficulties posed by discussions of resuscitation CONCLUDING REMARKS
preferences and hospice referrals. Both of these topics require There are advantages to both the patient and physician to
ample use of direct, but compassionate, honesty, as noted by von being honest and forthright, even if the truth is disappointing or
Gunten in 2 separate articles.25,26 Another perspective regarding frightening. Honest communication of clinical reality allows
the consequences of failing to discuss such issues is offered in, patients to make better informed decisions regarding treatment
‘‘Overcoming Obstacles to Hospice and Palliative Care: An Ethical options, fully prepare for eventualities, have worthwhile discus-
Examination of Inertia and Inaction.’’27 sions with loved ones, and not miss opportunities to do whatever is
Practical suggestions for teaching and improving commu- important to them with their remaining time. There are patients
nication skills are provided by Back et al28 in 4 articles in this series. who may not welcome such openness, but most do appreciate
The authors initially describe their use of role play to teach knowing what lies ahead. Learning how to impart such information
communication skills to medical oncology fellows. Subsequently, in a sensitive and compassionate manner requires not only good
they provide practical tips for discussing prognosis with patients, intentions, but strong communication skills (that we now know can
both those who are prepared to engage in such discussions29 and be taught) and the discipline to do what will serve the patient best,
those who are reluctant to initiate or participate in these conversa- rather than what is easiest or feels good. By providing stories of
tions.30 Finally, this group recently published a manuscript describing personal reflection as well as guidelines and practical advice, Art of
a method for teaching oncologists how to train oncology fellows to Oncology promotes lifelong learning, which enhances the practice
have better communication skills, by using role play situations.31 of oncology for both our patients and ourselves.
Testimonials written by oncology fellows have also been References:
published in this section, providing insights into the training and 1. Loprinzi C, Canellos GP. The art of oncology—when the
experience of junior specialists.32,33 Perspectives from oncologists- tumor is not the target. J Clin Oncol. 2000;18:3.
in-training enrich our collective experience as a community of multi- 2. Von Roenn JH, von Gunten CF. Setting goals to maintain
generational professionals, and remind us of the hard work involved hope. J Clin Oncol. 2003;21:570–574.
in climbing the steepest part of our professional ‘‘learning curve.’’ 3. Smith TJ. The art of oncology: when the tumor is not the
target. Tell it like it is. J Clin Oncol. 2000;18:3441–3445.
4. Bretscher M. Caring for dying patients: what is right? J Clin
PLEASE DON’T GIVE ME (US) BAD NEWS Oncol. 2000;18:233–234.
How should oncologists respond to a request to withhold 5. Leighl NB, Butow PN, Tattersall MH. Treatment decision aids
information? ‘‘Truth or Consequences, What to do When your in advanced cancer: when the goal is not cure and the answer is
Patient Doesn’t Want to Know’’ deals with this important scenario not clear. J Clin Oncol. 2004;22:1759–1762.
by addressing the consequences of denial for the patient, the family, 6. Mack JW, Grier HE. The day one talk. J Clin Oncol. 2004;22:
and the healthcare professionals involved.34 It begins with a 563–566.
powerful description of a clinical case, written by a medical student 7. Hilden JM, Watterson J, Chrastek J. Tell the children. J Clin
as she grapples with these issues. Her story ends with the Oncol. 2000;18:3193–3195.
unsuccessful resuscitation of a young woman with advanced 8. Helft PR. Necessary collusion: prognostic communication with
cancer. The author’s own reaction and feelings, and those of her advanced cancer patients. J Clin Oncol. 2005;23:3146–3150.
supervisors, serve as a reminder of the impact of futile resuscitation 9. Kalemkerian GP. Is collusion necessary? A commentary on
attempts and the attendant moral distress for all involved. The necessary collusion. J Clin Oncol. 2005;23:3153–3154.
related topic of what happens when a family member tells the 10. Panagopoulou E, Mintziori G, Montgomery A, et al. Conceal-
doctor to withhold information from the patient is addressed in ‘‘A ment of information in clinical practice: is lying less stressful than
Request for Nondisclosure: Don’t Tell Mother.’’35 This issue poses telling the truth? J Clin Oncol. 2008;26:1175–1177.

24 | www.jpho-online.com r 2010 Lippincott Williams Wilkins


11. Mehta P, Fetting J. Can you cure him, for the baby’s sake? we communicate in verbal or nonverbal language is controversial,
J Clin Oncol. 2003;21:4064–4065. we know that nonverbal communication1 is the oldest form of
12. Giorgi F, Bascioni R. Another infusion of Hope. J Clin Oncol. communication there is. Nonverbal communication may be
2009. In press. through hand gestures, facial expression, or eye contact. It can
13. Rousseau P. Death denial. J Clin Oncol. 2000;18:3998–3999. occur through any sensory channel—sight, sound, smell, touch, or
14. Harnett PR, Moynihan TJ. But doctor, what have I got to taste. How clinicians communicate with patients and families can
losey? J Clin Oncol. 2001;19:3294–3296. be studied in various contexts: including verbal communication,
15. Byock I. Dying Well: The Prospect For Growth at the End of nonverbal communication, and art. Expressive arts therapy uses
Life. East Rutherford, NJ: Putnam-Riverhead; 1997. music, dance, art, and writing to promote growth and healing.
16. Baile WF, Beale EA. Giving bad news to cancer patients: These nonverbal creative ways allow us to express our feelings.2
matching process and content. J Clin Oncol. 2001;19:2575–2577. The relationship between the counselor and the patient or
17. Baile WF, Buckman R, Lenzi R, et al. SPIKES-A six-step bereaved family member is fundamental to the therapeutic process
protocol for delivering bad news: application to the patient in counseling. Trust and acceptance are the foundation of the basic
with cancer. Oncologist. 2000;5:302–311. tenets of the therapeutic relationship. The therapist who is an
18. Eggly S, Penner L, Albrecht TL, et al. Discussing bad news in effective communicator conveys empathy and understanding,
the outpatient oncology clinic: rethinking current communica- enhances the therapeutic climate, and allows bereaved families to
tion guidelines. J Clin Oncol. 2006;24:716–719. feel understood and not abandoned by the medical staff after their
19. Loprinzi CL, Johnson ME, Steer G. Doc, how much time do loved one has died. This helping relationship, as Carl Rogers had
I have? J Clin Oncol. 2000;18:699–701. previously described in his client-centered humanistic model, is
20. Schapira L, Eisenberg PD, MacDonald N, et al. A revisitation of built on honesty and open, direct communication between the
‘‘Doc, how much time do I have?’’ J Clin Oncol. 2000;18:2640–2643. counselor and the client (http://www.nrogers.com/carlrogers-
21. Berry SR. Just say die. J Clin Oncol. 2008;26:157–159. bio.html Retrieved April 19, 2009).
22. Himelstein BP, Jackson NL, Pegram L. The power of silence. This study will explore the bereavement model of non-
J Clin Oncol. 2001;19:3996. abandonment, which Calvary Hospital (Bronx, New York) posits
23. Campbell BH. The sentinel. J Clin Oncol. 2008;26:1760–1761. in its mission statement. The philosophy and model of nonaban-
24. Moynihan TJ, von Gunten CF. Missed opportunities: com- donment are hallmarks of our program and facilitate communica-
mentary on ‘‘The sentinel’’. J Clin Oncol. 2008;26:1762–1763. tion between the bereaved family member and clinicians. In
25. von Gunten CF. Discussing do-not-resuscitate status. J Clin particular, we will focus on the therapeutic interventions our
Oncol. 2001;19:1576–1581. bereavement counselors and therapists utilize to communicate with
26. von Gunten CF. Discussing hospice care. J Clin Oncol. bereaved children, helping them to express their grief in ways other
2002;20:1419–1424. than speaking. Artwork is not just play for children, but serves
27. Daugherty CK, Steensma DP. Overcoming obstacles to many functions in helping bereaved children who have been
hospice care: an ethical examination of inertia and inaction. exposed to traumatic events.3 Even children who are comfortable
J Clin Oncol. 2002;20:2752–2755. and proficient with their verbal skills appreciate being offered other
28. Back AL, Arnold RM, Tulsky JA, et al. Teaching commu- modes of communication including puppets, sculpturing, and
nication skills to medical oncology fellows. J Clin Oncol. drawing.4 However before doing so, one must have an under-
2003;21:2433–2436. standing of this very unique hospital, and its origins and mission,
29. Back AL, Arnold RM. Discussing prognosis: ‘‘how much do which underlie our bereavement programs.
you want to know?’’ talking to patients who are prepared for
explicit information. J Clin Oncol. 2006;24:4209–4213.
30. Back AL, Arnold RM. Discussing prognosis: ‘‘how much do you CALVARY HOSPITAL
want to know?’’ talking to patients who do not want information Founded in 1899, Calvary Hospital is the only fully
or who are ambivalent. J Clin Oncol. 2006;24:4214–4217. accredited acute care specialty hospital in the United States
31. Back AL, Arnold RM, Baile WF, et al. Faculty development to devoted exclusively to providing palliative care to adult advanced
change the paradigm of communication skills teaching in cancer patients. It traces its beginnings to a group of 11 Catholic
oncology. J Clin Oncol. 2009. In press. widows who began caring for terminally ill women, using the
32. Francis LK. Learning to listen: a fellow’s experience. J Clin European Women of Calvaire movement as a model. Over the
Oncol. 2006;24:3209–3210. years, 2 orders of nuns, the Dominican Sisters of Blauvelt and
33. Arnold SJ, Koczwara B. Breaking bad news: learning through the Dominican Sisters of the Sick Poor, took up their work; they
experience. J Clin Oncol. 2006;24:5098–5100. began accepting male patients in 1947. In 1974, a lay administra-
34. Neff P, Lyckholm L, Smith T. Truth or consequences: what to tion was installed to lead the hospital.5
do when the patient doesn’t want to know. J Clin Oncol. This one-of-a-kind hospital has 225 beds—200 at a campus
2002;20:3035–3037. in the Bronx and 25 at a satellite with Lutheran Medical Center in
35. Hallenbeck J, Arnold R. A request for nondisclosure: don’t tell Brooklyn. It is devoted to palliative care for adults with advanced
mother. J Clin Oncol. 2007;25:5030–5034. cancer. It also has an active hospice program, begun in 1998, for
36. Francis PA. Surprised by hope. J Clin Oncol. 2008;26:6001–6002. people with all illnesses who can remain at home for their care.
37. Steensma DP. The narrow path. J Clin Oncol. 2001;19: Calvary serves about 15% of all individuals who die of cancer in
2102–2105. New York City.6
38. Armstrong J. Fellow suffering. J Clin Oncol. 2004;22:4425–4427. Embedded in the hospital’s mission is the philosophy of
nonabandonment. This is evidenced by the numerous bereavement
services the hospital provides without charge to family members and
How the Calvary Model of Nonabandonment Facilitates the community at large. The need to facilitate healthy bereavement,
Open Communication in Bereavement from cancer deaths and sudden or violent deaths, is great.
Sherry R. Schachter, PhD, FT, and Maria Georgopoulos, MA, FT.
Bereavement Services, Calvary Hospital/Calvary Hospice, Bronx, PHILOSOPHY OF CARE
New York.
Calvary’s ultimate goal is to help the dying patient live as
comfortably and usefully as possible until life ends Calvary earned
INTRODUCTION a reputation for compassionate and skillful control of patients’
It is well recognized that we communicate with one another symptoms long before palliative care and hospice care became
in numerous ways—by touch, sound, by direct or indirect verbal popular disciplines. Each patient is considered a ‘‘gift,’’ and
communication, etc. Although the exact percentage of how much therefore deserves to be treated with dignity, respect, and love.



The focus of care throughout the hospital is patient-oriented grief, and determine appropriate interventions in a timely manner.
rather than disease-oriented. The family is an essential part of the Separate homogenous groups meet weekly for bereaved parents,
unit of care and is given exceptional attention throughout the bereaved spouses or partners, adult children whose parents have
patient’s illness. One of our core beliefs is that care is not a died, adults who have lost a sibling. Calvary also provides short-
monopoly of any one discipline. Indeed, everyone involved in the time individual counseling for those who cannot, or do not want to
patient’s care makes some unique contribution. We offer a fully attend a group, or who may not be appropriate for group work.
coordinated program of palliative care—care that eases pain and For anyone who is not attending a group or receiving
increases comfort—by an interdisciplinary team, including physi- individual counseling, yet feels a need for bereavement services,
cians, nurses, family care specialists, nutritionists, pharmacists, we show a movie related to dying or bereavement. These Friday
psychiatrists, bereavement therapists, pastoral care providers of all matinees have become another successful way to communicate
denominations, physical and recreational therapists, art and music information about the bereavement process outside the confines of
therapists, and trained volunteers. Their primary goal is to make ‘‘verbal’’ therapeutic relationships.
patients as physically comfortable as possible, and to address with The Director of Bereavement Services coordinates and
dignity the psychologic and spiritual needs of patients and, equally facilitates the many bereavement programs offered at Calvary
important, the needs of their families. All Calvary care is guided by Hospital. In addition to those mentioned above, these include
our core values of compassion, respect for the dignity of every numerous educational programs for bereaved families and friends
patient, and nonabandonment of patients and families. as well as education programs for clinicians in the community. One
program, called Mentors Through Mourning, is a series of free
lectures for school administrators, teachers, guidance counselors,
STATISTICAL OVERVIEW OF CALVARY HOSPITAL psychologists, and social workers. Our Brown Bag Lunch Series is
In 2008, Calvary cared for more than 5440 patients and a weekly educational summer program for clinicians involved in
families: 3105 inpatients; 1899 patients through hospice and home palliative care. In addition, we offer a 10-week bereavement course
care; and 436 through the Center for Curative and Palliative for clinicians, now in our 18th year.
Wound Care and outpatient department. The Center recorded 6113 We publish a bereavement newsletter, Calvary in Touch,
patient visits in 2008, making it one of the region’s largest facilities which is mailed out every other month to our families and clinicians
dedicated to wound care. Our patients came from across the New in the community. The newsletter details all our bereavement services
York tri-state area and the majority (82%) of patients were aged 55 for the month and includes pertinent articles related to grief and
years and above. Minorities, including Asian, African American, bereavement, written by the hospital’s bereavement counselors.
and Hispanic populations, made up 45% of all inpatients. Nearly General discussions and/or bereavement workshops are
half (47%) of our patients were Catholic; 26% were Protestant; offered throughout the year. The themes for these discussions
14% were Jewish; and 13% were from other backgrounds, frequently tie into seasons or holidays.
including Muslim, Greek Orthodox, Buddhist, and Russian
Orthodox. The most frequent cancer diagnoses at Calvary Hospital
in 2008 were lung (16%); colon (8%); breast (8%); pancreas (7%); Programs for Bereaved Children and Adolescents
prostate (6%); liver (4%); stomach (3%); brain (3%); ovarian Calvary also offers bereavement support for young children
(3%); bladder (2%); and other cancers (40%). The average length and teens. Precious Moments, a weekly group for 6 to 11-year-olds,
of stay was 24.9 days; median length of stay was 12 days. began in 1991. Teen groups, begun in 2001, also meet on a weekly
basis. As all our bereavement programs are open to the community,
without charge, the focus of our work is communicating with these
AFTER DEATH: HOSPITAL RESPONSIBILITIES FOR youngsters in a way that is safe, appropriate, and meets their needs
BEREAVED FAMILIES without traumatizing them further. Approximately 4% of children in
the United States under the age of 18 years have experienced the
Condolence Cards death of a parent.7,8 The United States Census Bureau data from
Within 1 week of the patient’s death, family members receive 2002 indicate that about 857,000 children in the United States live in
a unique hand-designed condolence card. The cards are mailed to all a single-parent household because of the death of the other parent.9
families—whether the loved one died as a Calvary Hospital inpatient These numbers are significant, because for children, the death of a
or in our hospice. The condolence card is followed by an invitation to parent is perceived as a significant loss affecting their sense of security
the hospital’s monthly memorial service. and affection.10,11 Losing a parent is highly stressful for children, and
can leave them at risk for complicated grief.12–14 Bereaved children
can exhibit symptoms of distress including pain, sadness, anger,
Monthly Memorial Service confusion, sleep disturbances, and an inability to focus on school-
Every month, Calvary hosts a memorial service, where we work.9,15,16 Approximately 20% of bereaved children continue to
honor all Christian patients who have died the previous monthly. exhibit emotional and behavioral symptoms persisting for 2 years
Approximately 150 to 200 family members and friends attend this after a parent’s death.16,17
Service. Services are led by staff of our Pastoral Care Department Support can affect the grieving process and enhance
and the Director of Bereavement Services. The memorial service is parenting skills, and facilitate the child’s return to their previous
further enhanced by the attendance of one of our family members level of functioning.13,18 Higher rates of psychologic symptoms and
whose wife died several years ago in our hospital. He was so pleased distress are found in children from unstable home environments
and grateful with the care that they received that each month he plays and from families that have few resources or supports.17,19 Open
the harmonica and sings at the memorial service. A memorial service communication and shared information between the surviving
for patients of the Jewish faith is held every other month. parent and the child are correlated with better psychologic
outcomes for bereaved children.18,19
Studies have shown that attendance at bereavement support
Adult Bereavement Support groups and bereavement camps are helpful for children13,20–22 and
Our extensive bereavement program includes survivors of teens.23
those who have died at Calvary Hospital or in our hospice
program, and also those from the community whose loved ones
were did not die at Calvary. A major focus of our bereavement Bereavement Support for Children and Teens
services includes adult bereavement support groups that are closed, The Bronx (1 of the 5 boroughs of New York City) is an
time limited sessions that meet weekly for one and a half hours a urban area; the children and teens who live there reflect the
week. All groups are free, and they are open to the community. diversity of the New York City. Many of the children and teens we
Intake interviews are conducted to assess the bereaved serve live in poor neighborhoods. More than two-thirds are
individual, identify those who might be at high risk for complicated Hispanic and African American. In many cases, family ties are



tenuous. Although many of the hospital’s bereaved children come being told the truth. She did not know how her sister died but she
from the families of patients, referrals also come from a variety of knew that her family was not being honest with her.
other sources: parents and guardians, social workers in the We worked with her guardian to get her past all the shame-
community and at other hospitals, school guidance counselors, and based feelings she had about telling this little girl the cause of death
case workers from the New York City Administration for Children’s and gave her the words to be able to tell her about her sister’s
Services. In some instances, the hospital receives referrals from the suicide. When the guardian was able to share this information, the
courts, which may mandate that a troubled child attend bereavement little girl came to group asking if she could finally share the truth.
groups. Families in this population experience many sources of stress She drew a picture of how her sister died and spoke of the reality of
in addition to the death of a loved one (eg, teen pregnancy, a higher suicide in her family. She was then able to obtain support from
incidence of divorce and separation).24 Clinicians and researchers everyone and begin the healing process.
often recommend participation in support groups as an appropriate We incorporate a ‘‘doctor’s session’’ in the group cycle,
intervention for bereavement. when a Calvary Hospital physician answers questions about illness
and death such as ‘‘what is cancer?’’ or ‘‘how do you know if a
person has died?’’ During one of these sessions, a child who came
Precious Moments and Teen Groups from our hospice program had a question about something he was
Precious Moments is our children’s bereavement support very disturbed about. He remembered his father being poked by
group for those aged 6 to 11 years. The group includes children these short needles sticking out of his body and had been too scared
who have lost a parent or guardian, a sibling, a grandparent or to ask his family what was happening during that time. The doctor
other important family member as well as the loss of a friend. As who participated in this session happened to remember working
our groups are open to the community, typical losses are illness- with this boy’s family and knew that he was talking about
related, and also accidents, suicides, and murders. The group meets acupuncture, which was used to alleviate his father’s pain. Our
in 8-week cycles on a weekly basis and focuses on assisting and physician was able to explain this to the boy and relieve his worry
empowering children with their grief process. The room is set up that his father had been in pain.
with stuffed animals, snacks, and the children’s artwork. The group Being given the opportunity to tell your story even if you
facilitators and children sit on pillows arranged in a circle and each were not there for the death is especially important. When told
session focuses on a different activity related to their grief. For about the death of a loved one, children and adults alike try to
young children in the lower primary grades, touch plays an piece together in their mind how the death happened to try to make
important role in their development. Touching can communicate a sense of it. We introduced a mosaic activity at our camp where the
sense of belonging, security, and understanding to the bereaved children and adolescents were asked to make a mosaic expression
child. They are not alone in their grief. of their grief. One girl chose to recreate the scene of her mother’s
Although children are not fully developed in their level of murder in her mosaic. She tried to make sense of a senseless act
understanding concepts of death and dying, they are still able to through her artwork. She included shards of glass that may have
understand separation and loss because they feel it. We teach been present after the incident, candy wrappers that may have been
children important life lessons when we allow them to honor their found on the street, drops of red paint to signify her mother’s
pain and participate in memorializing loved ones. The need to see, blood, and green paint to signify the murderer’s sweat involved in
feel, hear, and touch to understand is heightened with children and killing her. One part of her mosaic included a section of hope in her
adolescents, because this is how they learn about their world. healing process marked by the words ‘‘live, love, laugh,’’ and her
Allowing children to participate in funeral rituals helps them with belief in peace signified by a bird and a peace sign.
their acceptance of death, just as funerals help adults begin to Once children have the facts of their loved one’s death we
believe that a death has occurred. Clear communication about move on to helping them understand their feelings.26,27 Children
what they will see at a funeral helps children to be less frightened by are able to feel the pain of separation, sadness, anger, and fear
the body and also by others’ reactions to the death. but they may not know how to verbalize their feelings. They
The group activities are centered around 4 main objectives: also may not be aware of how their feelings affect their body.
(1) helping children understand the facts of their loved one’s death; Children in the group learn to explore their feelings and give voice
(2) helping them express their feelings around the loss; (3) to them. They also learn to develop healthy ways to express their
developing ways to remember their loved one; and (4) assisting feelings—particularly the more difficult ones such as anger, fear,
them with investing in their own lives and pursuits. and regrets.
Children are often given little information about the death One 8-year-old girl was harboring feelings of guilt for telling
of their loved one. They are also all too often excluded from rituals her mother that she hated her 2 days before her sudden death from
such as funerals, burials, and bedside good-byes.25 Parents or breast cancer. She had kept this to herself as she acted out angrily
guardians often feel they are protecting children by excluding them, in school. When we spoke about guilt and regrets in the group she
but children need to be included to facilitate their acceptance of the timidly wrote her guilt on a piece of paper and shared it with
reality of death. When working with children, it is important to everyone. To her surprise, several of her peers shared similar stories
educate parents or guardians about children’s grief processes to of angrily telling their loved one that they hated them or wished
help them impart important information about the cause of their them dead. Getting support from her peers normalized her feelings
loved one’s death. and opened the door to communicating as a group about the
Children have a deep need to tell their story and can only do nature of relationships and how we often become angry at our
so if they know the facts of how a person died. It is best to keep the loved ones but we cannot cause them to die.
facts as concrete as possible to avoid confusion. Depending on the In one activity, the children draw a body and place feeling
child’s age, they may not understand all of the information they are faces on the body parts where they feel that particular feeling.
given but they will take in as much as they can and as they grow in Drawing and other creative expressive interventions are effective
their understanding they will incorporate new information. modalities when working with bereaved children and teens.28 A
A group activity that can be used to help them tell their healthy way to express their anger is to write everything that makes
story is to have them draw what their loved one died from or to them angry about their loved one’s death on a balloon and then do
have them write about what they know about their loved one’s a ritual balloon popping. Children are often socialized to believe
death. We worked with an 8-year-old girl whose sister had that they should not express their anger. In the groups, we teach
committed suicide but she was not told about this. Instead, she them that anger is just like any other feeling that needs to have a
was told her sister had died of an asthma attack. This was voice. We provide them with ways to express anger appropriately.
confusing, because the little girl knew her sister never had any One way is to do something physical, such as punching a pillow or
breathing problems. During group time, when asked to draw how a scribbling it out. We also introduce music, outdoor play, and
loved one died, she would get very frustrated and draw nothing. In talking as ways to express feelings, reassuring them that they can
talking to her one-on-one, she was very angry that she was not find safe people to discuss whatever they feel.



Music has opened many doors to expression of feelings. One CAMP COURAGEOUS
10-year-old boy used a drum to express his powerful fear that other In 1997, Calvary initiated Camp Courageous. Our idea was
family members would die after his father’s murder. This was the to provide a safe environment where children and teens could come
first time he was able to express this fear during the year following together in a new venue and where intensive expressive therapeutic
his father’s murder. activities could be used to further their growth and development.
Developing rituals to remember a loved one and to honor Each year since then, the program has expanded, with new
their pain is another important aspect of a child’s grief process. activities that are congruent with current research. The weeklong
Having children visit the cemetery, write a letter to their loved one day camp is supported by the hospital and by individual,
or have birthday cake on their loved one’s birthday can foster foundation, and corporate donations. Attendance is restricted to
healing in many children. Assisting them with identifying special children and teens who have attended the hospital’s support groups
objects they may hold on to for comfort such as ‘‘mom’s favorite or are known to the staff.
sweater’’ or ‘‘a locket with dad’s picture in it’’ helps children Counselors consist of staff members from Calvary Hospi-
maintain a connection to their loved one. Making a grief bracelet in tal’s nursing and hospice departments; they were joined by others
the group makes their pain real and is a way to acknowledge their from pastoral care, the laboratory, pharmacy, and even the security
grief, much like wearing black may be a symbol of grief in an adult. department. As many of the children live in households headed by
One 6-year-old boy was able to express his feelings of loss to his women, we recognize the need to have male counselors who could
father for the first time by explaining to him what his grief bracelet act as role models for the campers. The counselor:camper ratio is
signified. 1:2, as we believe it is important for campers to receive individual
Finally, giving children permission to be children again is attention and have an opportunity to share their stories with
especially important. Children need to be reassured that it is okay counselors and with their peers. Campers and counselors partici-
to have fun and this does not mean that they no longer love the pate in various bereavement and recreational activities throughout
deceased. We teach children that to incorporate a loss in our lives the week. On the last day, campers, parents/guardians, and
does not mean that we need to stop our own life. Helping children counselors complete evaluations.
to clearly identify their interests and have them slowly begin to For most activities, the campers are divided into 2 large
pursue those interests again teaches them that they can handle all groups (6 to 11 y and 12 to 18 y) and then into smaller groups with
their emotions without forgetting to take care of themselves. counselors. However, in many instances, the entire group comes
Activities in this area center around helping them to identify other together for an activity to promote intimacy and allow the campers
special people in their life that they may go to for support, perhaps to see the similarities in their experiences across age groups.
by having them make a family tree. We also talk about what it The group circle is a daily part of the camp experience. After
means to take care of themselves and draw what makes them breakfast, campers and counselors gather in a circle to discuss how they
feel happy and safe. We make sure to spend some time laughing in are doing and review the day’s schedule. At the end of the day, they join
the group and doing something fun, such as throwing a ball around together in a circle to recap the day’s events, and share feelings again.
or making pictures of the things we love and cherish about our When separated into smaller groups the children are less
lives. intimidated and are often more expressive and communicative. We
retain the large group for the first day (for introductions) and the
last day (for closure). The group circle experience helps campers see
the universality of their feelings and form bonds with one another.
TEEN GROUPS It also gives counselors an opportunity to interact with all the
Group support is an ideal intervention with bereaved campers and to model appropriate group behavior.
teenagers as they are comfortable and used to being in groups
(eg, sport programs, school activities, etc.).29 A group setting
provides a safe place where the bereaved adolescent can learn and
practice social and interpersonal skills with other teens.29,30 Our CONCLUSIONS
teen groups are tailored to adolescents between the ages of 12 to 18 Teaching children to communicate in an adult world can be
years. The teen groups follow a similar structure and set-up challenging and inspiring. Children feel comfortable in a world of
(without the stuffed animals, which are not age-appropriate for play where they can learn a lot about life if given the opportunity.
teens). Again, the groups are open to the community and include Children take in a lot of the world but are unable to make sense of
many different relationships-death of a parent/guardian, sibling, it without the help of adults. Helping them to define what they see,
grandparent or other important family members, and also the hear, touch, and feel helps them to grow up with tools to manage
death of a friend. The death of a friend is a very significant loss for all of life’s challenges. We all learn and see things in our own
this age group, not only because teens tend to gravitate toward specific way and identifying various modes of expression and
their peers, but also because suicides and fatal accidents are communication to children makes them more secure adults in the
prevalent in this population. The loss of a friend may not seem future. Children are able to handle a variety of different experiences
important, yet it can be devastating for a teen. The teen groups if they are prepared for them through honest communication that
allow older children to interact with bereaved peers, which help meets them at their own level of understanding.
them realize that they are not alone 22,31 and can also relieve the References:
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Child Adolesc Psychiatry. 2006;45:681–690. Cancer Center and Research Institute, Tampa, FL.
13. Christ GH, Christ AE. Current approaches to helping children cope Cancer is a disease of aging. Fifty percent of all malignancies occur
with a parent’s terminal illness. CA Cancer J Clin. 2006;56:197–212. in people 65 years and above and this percentage is expected to
14. Kirwin KM, Hamrin V. Decreasing the risk of complicated increase with the aging of the population.1
bereavement and future psychiatric disorders in children. The management of cancer in the older aged person is complicated
J Child Adolesc Psychiatr Nurs. 2005;18:62–78. by the diversity of the older population. For more than 15 years I
15. Corr CA. 2000. What do we know about grieving children and have recommended that the treatment of patients aged 70 years and
adolescents? In: Doka KJ, ed. Lining with Grief: Children, above be based on physiologic rather than chronologic age.1 Age
Adolescents and Loss. NY: Hospice Foundation of America; 70 years is a landmark beyond which the majority of older people
2000:21–32. are found, but it would be inappropriate to consider old every
16. Dowdney L. Childhood bereavement following parental death. person 70 years and above. Physiologic aging is assessed with a
J Child Psychol Psychiatry. 2000;41:819–830. comprehensive geriatric assessment that includes function, comor-
17. Worden JW. Children and Grief: When a Parent Dies. New bidity, presence or absence of the so-called geriatric syndromes,
York: Wiley; 1996. polypharmacy, nutrition, and social support.1
18. Kirk K, McManus M. Containing families’ grief: therapeutic Even the CGA is inadequate however to assess some other
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19. Christ GH. Healing Children’s Grief: Surviving a Parent’s values and goals, inscribed in the meaning of the patient’s life. Nor
Death from Cancer. London: Oxford University Press. 2000. does the CGA provide an assessment of the quality of the patient’s
20. Dowdney L, Wilson R, Maughan B, et al. Psychological relationships with others as well as with her/himself. Last but not
disturbance and service provision in parentally bereaved children: least, the communication with the older aged person may be
prospective case-control study. BMJ. 1999;319:35–357. problematic, partly due to sensorial and cognitive decline, and
21. Creed J, Ruffin JE, Ward M. A weekend camp for bereaved partly due to diversity of language between the older person and
siblings. Cancer Pract. 2001;9:176–182. the younger provider. In this study I will try to demonstrate how
22. Mitchell AM, Wesner S, Garand L, et al. A support group narrative may complement the medical, sociologic, and emotional
intervention for children bereaved by parental suicide. J Child assessment of the older person. Narrative may provide at the same
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23. Steen KF. A comprehensive approach to bereavement. Nurse patient and a more effective communication.
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24. Ople ND, Goodwin T, Finke LM, et al. The effect of a
bwreavement group experience on bereaved children’s and NARRATIVE IN HUMAN CENTERED RESEARCH
adolescents’ affective and somatic distress. J Child Adolescent Narrative is one of the tools of qualitative research that is a
Psychiatric Mental Health Nurse. 1992;5:20–26. form of research aimed to take into accounts nonmeasurable
25. Geis HK, Whittlesey SW, McDonald NB, et al. Bereavement aspects of a personality, such as beliefs, values, and meaning.2,3
and loss in childhood. Child Adolesc Psychiatr Clin N Am. It is important to realize that there are many narratives of
1998;7:73–85. each human experience: the narrative of the subject, the narrative
26. Rothe E. A psychotherapy model for treating refugee children of the people who interact with the subject (physicians, nurses,
caught in the midst of catastrophic situations. J Am Acad social worker, dietitian in the case of medical encounters), and the
Psychoanal Dyn Psychiatry. 2008;36:625–642. narrative of a distant observer of the interaction. Furthermore,
27. Gil E. The Healing Power of Play. NY: Guilford; 1991. each narrative is fluid, as the same experience is modulated by new
28. Malchiodi CA. Using creative activities as intervention for experiences, not unlike our vision of a building or of a landscape
grieving children. http://www.tlcinstitute.org/creative.html Re- varies continuously with the change of the position of the observer.
trieved April 20, 2009. This ongoing change of perspective has been named the fourth
29. Moon PK. Reaching the tough adolescent through expressive dimension that the cubist artists tried to reproduce in their
arts therapy groups. http://www.counslingoutfitters.com/ paintings and sculptures. Thus we are to assume that each
Moon2.htm Retrieved April 21, 2009. narrative is an evolving interpretation of the reality, and that
30. Schachter SR, Georgopoulos M. Camps for grieving children: communication is reached only through interactive narratives.
lessons from the field. In: Doka KJ, Tucci A, eds. Living with Without this interaction human experiences may run parallel like
Grief: Children and Adolescents. Hospice Foundation of fluids of different density overlap each other without ever mixing,
America. NY: Brunner Routledge; 2008:233–255. or may occupy different 3-dimensional spaces, like the cacophonic
31. Web NB. Helping bereaved children: A Handbook for sounds of a busy street. The examples of both ‘‘noninteractions’’
Practitioners; NY: Guilford Press. are plentiful. The traditional family in which the main rule was to
32. Broome M. Nonverbal Communication. Adapted from a work- prevent conflict represents a classic example of fluids that do not
shop handout by Dr Rehman, University of South Carolina. mix. Today we are more used to the second type of noninteractions
33. Englund MM, Levy AK, Hyson Dm, et al. Adolescent social including the shouting matches of advocacy groups with different
competence: effectiveness in a group setting. Child Dev. 2000; political agendas, or of divorcing spouses who have never learned
71:1049–1060. how to fight and communicate at the meantime.
34. Leader E. Why adolescent group therapy. J Child Adolesc The patient provider interaction also wants an encounter of
Group Ther. 1991;1:81–93. narratives. One of the paradoxes of our times is the increasing



dissatisfaction with the medical profession at a time when medicine More in general, however, narrative may help the provider to
has produced therapeutic advances that would have been recalibrate continuously his/her role and to gain a progressively
unbelievable only 10 years ago! It looks as we have lost the ability better appreciation of his/her own personal value.
to decode the patient’s language when we learned to decipher the
language of the DNA.
It easy and unfair to oppose high tech and high touch TABLE 1. Roles of Narrative in Geriatric Oncology
cultures. In reality modern medicine has always pretended to be
high tech and has always disdained high touch as a form of Communication
renunciation to its scientific duties. Millions of individuals have Language
fallen victims of ‘‘scientific medicine.’’ It is well known that Dr Values
Benjamin Rush killed many more patients with the phlebotomies Discovery
used to treat yellow fever than the yellow fever ever did in Chicago Patient
in the 1800s, and we have recently learned that many more people Professional
have been hurt by the early detection of prostate cancer than ever Resources
would have been by prostate cancer itself.4,5 Thus, I believe that the Social
technology itself is not to blame. Rather one should blame a 2-fold Personal
false pretense entailing that medicine is a science and that medical Shared decision making
findings always promote human happiness and prosperity. The
screening of asymptomatic patients for early prostate cancer is an Narrative may unearth unexpected and extremely valuable
excellent example. It was wrongly assumed that early detection and sources of support. When I learned from one of my patients who
treatment of cancer would always led to a cure and that the was dangerously anemic that he was a Baptist minister I called the
prevention of few prostate cancer deaths was beneficial despite the local seminary and obtained 78 blood donations in a single day, so
substantial price of sexual impotence and urinary incontinence for many that the blood bank could not handle them: it looked like a
millions of men and the loss of intimacy for millions of couple. modern version of the multiplication of breads and fish by Jesus.
Whether based on bad science (as it was the case of Dr Rush) or Ultimately, narrative allows shared decision making that is
good science the main problem of scientific medicine has been the the main goal of a medicine that considers personal autonomy the
ignorance of the patients’ voice, of the patient’s narrative. This is supreme value.
particularly true in the case of older individuals, because limited life Investigations based on narrative have rules that it would
expectancy and limited tolerance of stress lessen the benefits and take too long to summarize in the present context. The basic
increase the risk of any forms of medical intervention.1 In addition, analysis involves analysis of the content and analysis of the
a long life experience certainly has modulated the values of these language. I will provide now 2 examples of this type of analysis.
individuals. Although the prolongation of life might be the
preponderant goal of cancer treatment for the young breadwinner
of a young family, preservation of meaning may be the most ANALYSIS OF PATIENT NARRATIVES
important goal of an old person facing an incurable disease.
In addition to the aging of the population, a number of The Indian Chief
other changes mandate the search of a common language in the There was something unusual about this old man in jeans
practice of medicine. This include globalization that has produced and T-shirt, maybe his long hair or the nuance of the skin. I really
many cultural and ethnic clashes, the disappearance of the could not say. He saved me the troubles of further detective work:
extended family, that has reduced the pool of home caregivers,
the experimenting of new forms of family, including same sex ‘‘Good morning Dr Balducci, I am chief Whitehorse (the name is
couples or unmarried couples with children, and last but not least invented). You are perplex doctor? Yes, I am an Indian chief; my
the emerging voices of the minorities. Feminism may be considered tribe was disbanded a long time ago, at the beginning of the
a defining motive of this change, as it called for the overturning of a century. You would not find any records of it. It is all here—he
patriarchal society model and for a definition of the mutual roles of pointed to his heart—transmitted to my father by my grandfather
the partners based on an ongoing negotiation aimed to validate and and by my father to me. If you are going to be my doctor you need
improve individual talents. to know it. I am not afraid of dying, but I have something to
Thus, the search of a common language through narrative accomplish before I die. I have to finish the history of my tribe, that
should be a goal for any medical provider wishing to be effective, not otherwise will fall into perennial oblivion’’
just for those caring for the elderly. The elderly represent a convenient ‘‘Nice meeting you chief! How much time you need to finish your
model to highlight the roles of narrative in medical practice. history?’’
Table 1 summarizes the roles of narrative in geriatric ‘‘Approximately 6 months’’
oncology. Language is based on values. Values need not to be ‘‘Chief, I started writing on a yellow pad, as I generally do, to leave
shared, but have to be respected when communicating: a patient some tangible documents of our encounter, here are the facts. You
has the right to refuse life saving treatment, such as a feeding tube have what we call hormone refractory prostate cancer. We have
or to ask for life-prolonging treatment such as artificial ventilation, two options: chemotherapy with Docetaxel and prednisone has a
even if the provider disagrees with that decision. The narrative 50% chance to obtain a response, and with a response you can
allows unearthing special aspects of the patient’s life that may be leave 12 to 13 months, but you may feel too tired to write. Without
important to the treatment plan. A clear example is the presence of chemo you have approximately 9 months to live. If you develop
an illegitimate child to whom a dying patient wants to bequeath bone pain, that is very likely, we can treat you with radiation or
some of his/her wealth. This type of information is unlike to emerge radioisotopes, which may relieve the pain without causing nausea or
during a standard medical encounter especially if the legitimate fatigue. You realize of course that I can’t predict your outcome.’’
spouse and the legitimate offspring are present. The narrative also ‘‘Thanks for leveling with me doctor: I’ll try to stay without chemo.
allows the health professional to discover something about her/ I know I will be able to write my history.’’
him. For example, it is common to have feelings toward the ‘‘How can you be so sure?’’ I was intrigued
patient, and these feelings cannot be controlled. What can be ‘‘Because the night I was borne, in a small hut in an island of the
controlled is what we do with those feelings. A patient perceived as Chesapeake Bay, there was a terrible thunderstorm, and a
disagreeable may be shortchanged unless the provider is aware of lightening broke the island into two pieces. That signed my
these feelings and of their sources and takes appropriate measures. destiny. It meant that after me there would have not been any
These may include avoidance of judgment (blaming the victims: the recognizable descendants of my tribe. That sign bestowed on me
patient is responsible for the disease and the poor outcome) and in the task to preserve the memory of my tribe.
extreme cases the referral of the patient to a different provider. ‘‘Don’t have you children?’’



‘‘I have two daughters,’’ he answered, signifying that I personal history, it gave me an additional chance to support
would have not obtained any more answers. Christ’s pain, to redeem myself of the many past refusal to
I had monthly visits with chief Whitehorse. When he acknowledge Christ in the dying patient (or for that matter in the
developed pain we treated him with radiation therapy, radio- dying family members: I must confess that I lived the passing of my
isotopes, and during the last 2 months of his life with intrathecal parents and of other older people I cared for as a form of relief
opioid infusions, not to cloud his cognition with systemic opioids. from a frustrating duty, a waste of my time).
´
With injections of epoetin a, we managed his anemia, so that he did The message of the chief had very important implications in
not feel too fatigued for writing. He died few days after returning the planning of his care:
the correction of the galley proofs of his book to the publisher. First, I felt that I had to level with him at any step of the
I learned many other things of the chief; as a young man he treatment. Although we were not exactly friends, we had a
had been an activist for the rights of the minorities; he had married relationship, we had met each other. The preservation of his trust
an African American woman from whom he was divorced. He had was as important to me as the preservation of the trust of my
not paid much attention to his mission until he was diagnosed with spouse or my closest friends.
prostate cancer and realized that he had a limited time to live. I Second, we shared the deep-seated conviction that we were alive
never met any member of his family and he made it clear he did not for a reason, that we had a unique function that only we could
care to talk about them. perform, that we were sacred. This common persuasion
established a kind of brotherhood among us. We recognize each
other as children of a common father that had commissioned us
Analysis of the Case a special function. The sentiment of being part of the same
The chief was a good narrator. His story emerged family also supplied us with a common language. We both
spontaneously, without being prompted. I may deserve the credit, believed in signs and in their interpretation.
however, to have allowed him to talk, rather than to cut him short Third, the chief’s sense of mission determined the goal of care.
or to ignore his message. His message was very important to the Instead of aiming to keep him alive indefinitely with whatever
treatment plans. means, I was committed to preserve his life and his cognitive
Four messages emerged from his brief history: function long enough for him to finish his writing.
‘‘I am an Indian Chief’’ meant to tell me: I am a person with Fourth, I learned a lasting lesson that will influence my practice of
a precise role in my life, I am not a statistic and even less am I a medicine from then on. I learned what the writers of the Quoleth
number. I am in charge of my life, you are my adviser but you are meant when he said that there is ‘‘a time to be borne and a time to
not expected to take decisions for me. Of course I wondered if he die.’’ This lesson is particularly pertinent to modern medicine:
also wanted to emphasize the importance of his role, but I do not nowadays death is almost always a managed death, unless one dies
think so. During the many struggles of his life he must have learned immediately in the course of an accident. Artificial ventilation may
over and again that being an Indian chief without tribe did not prevent indefinitely the death from respiratory failure and artificial
amount to much in our times. I prefer to think (and this is my dialysis the death by renal failure, while invasive cardiovascular
narrative) that he identified himself as a chief the same way another support methods may delay death from heart failure. In these
person would have identified himself as a plumber, a postman, a circumstances, providers and patients alike are faced daily with the
teacher, or even an unemployed person. He wanted for me to know question ‘‘when is it the time to die?’’ The chief provided the
him as a person, he requested personalized treatment. answer: the time to die is when we are incapacitated to pursue our
‘‘I am not frightened by death, but I have something to mission. The chief taught me to obtain a ‘‘value history’’ from all
accomplish before I die’’ meant: I have a mission in this life. I want of my patients, to try to understand what they identify as their
just enough life to accomplish my mission; my life is worth living unique mission in life.
only as long as I can carry on my task. I do not believe he ever used
the word mission, and I doubt that that he was even familiar with
its meaning, but I believe I am justified to use it in narrating ‘‘my’’
history of the encounter with the chief. ‘‘Mission derives from the The Witch
Latin ‘‘mittere’’ ‘‘To send.’’ The chief wanted to tell me that he was She gave the impression of never have been young. From
endowed with a special charge that only he could accomplish. The her papers I knew that she was 82 years old, but she could as well
statement of one’s mission is the statement of one’s uniqueness or have been 50 or 90. Despite my attempts to establish eye contact,
sacrality (sacrum in Latin means reserved for a special task). her eyes did not offer to me a single chance to meet. If anything she
‘‘When I was borne a thunderstorm broke the island and reminded me of the oxen I had witnessed during my infancy
sealed my destiny’’ meant ‘‘I believe in signs and you have to plowing the ground from early morning to late night. Her son was
respect my beliefs.’’ The chief and I never discussed religion or standing and walking up and down, rubbing his hands as if trying
God, yet I could not help seeing the power of the biblical narrative to wash something away.
in the description of his birth. As a Christian I have to account for ‘‘Good morning, I am doctor Balducci. I wish to thank you
a number of histories that are foreign to my experience: God that for coming to see me, and I hope that my accent won’t hamper our
talks to Moses through the burning bush and on Mount Sinai, God communication I said with my best smile, can you understand me
that talks to Samuel in the night and command to Samuel to anoint Mrs. Smith’’
the kings of Israel; God that talk to Elijah and to the prophets, etc. ‘‘Yes I can,’’ she answered.
I may dismiss these stories as myths and legends or I can humbly ‘‘And you?’’ I had turned to the son he grumbled something
accept that our Jewish ancestors had the ability to listen to nature I took for an affirmative answer.
and to recognize the voice of God, an ability that we have lost. ‘‘Mrs. Smith I will be as honest as possible: is it OK?’’ No
Thus, I could consider the history of the chief’s birth germane to answer.
the religious history I have been familiar with. Whether he ‘‘You have a lymphoma,’’ a cancer of the lymph nodes;
identified or not the author of the signs, he had been commissioned there are at least a hundred types of lymphomas. The good thing is
by a being beyond human comprehension. that yours is curable in most cases, but you will have to take some
The chief refusal to speak about his family relationship was chemotherapy, and I went into a long explanation of how
also part of his history: it indicated that he was alone in his pursuit. chemotherapy is given and what kind of side effects to expect. I
He could only count on the strength of the deity that had was not sure she was even listening to me.
commissioned him and on my advice if I elected to believe him. I ‘‘Look doctor, the son finally butt in, I took her here
could not help seeing in the faith and the suffering of this dying because I read that you specialize in treating cancer in old people.
man the loneliness of Christ abandoned by his disciples. As a She is old, so I leave her in your hands.’’
believer I gained the impression of caring for the dying Christ. This I took a deep breath. If I understood him correctly he was
of course made the interaction with the chief very meaningful to my planning to dump his elderly mother into my hands for total care,



not just the chemotherapy. I knew it was going to take a long from me some basic statements about myself, with a lot of pain and
explanation: devotion, I could have been adrift in life like that woman. I
perceived the mounting hostility toward her as a form of hostility
‘‘Mr. Smith! I am sorry if there has been some misunderstanding, directed against me, my own personal history, and my parents who
but you see, I can certainly make sure that your mother receives the had discouraged open communication.
most effective and safest care, but I can’t put her in the hospital for My history as a physician: I recognized the difficult patient;
18 weeks. In reality I cannot put her in the hospital even for one what has been named the hateful patient. I needed to force myself
day, because Medicare will not pay hospitalization for chemother- to provide the best possible care under less than ideal conditions.
apy treatment. She needs to have residence where she is not alone. Although her treatment had appeared aimless, as this woman
It is not safe for anybody but particularly for old folks to live alone had not sense whatsoever of her personal value, leave alone her
when they receive chemotherapy. Indeed I’d recommend that you personal mission, my duty was to try to cure her. I felt worse than
take her home; I will be happy to talk to a local oncologist about lonely in pursuing this ethical task; I felt surrounded by adversarial
her treatment.’’ forces ready to rejoice at my failure.
‘‘It can’t be done! He was positive. The social worker narrative, that reflected the narrative of
‘‘Then, I’d like for you to talk with the social worker and to find the other professionals involved in the case and yet is narrated
out which kind of arrangements can be made locally. Could not she according to my perception. ‘‘The woman was a lost case; she was
come and live with you.’’ her own worst enemy; she had not been able to elicit the affect of
‘‘No!’’ the request for an explanation was firmly discouraged. her children; she had given origin to monsters; she was a witch.’’ In
In the meanwhile the patient did not react: she looked more and a village of sub-Saharan Africa undoubtedly she would have ended
more like the oxen led by a farmer to plow the ground. It appeared her days on a pyre, burned as a witch, in an attempt to exorcise the
she had no will of her own. malignant spirits responsible for a drought or an epidemic. The
‘‘What do you want to do Mrs. Smith?’’ absence of a personal narrative did not prevent my coworkers from
‘‘Whatever it has to be done.’’ building an ongoing narrative made of images every day more
‘‘Do you want to be cared of your lymphoma?’’ negative and more extreme. At the beginning she was considered
‘‘I guess.’’ the victim of selfish children; later a feeble person incapable to
She spent a night in a hotel and the following day was admitted to make her will known; ultimately she was seen an emanation of
an adult living facility close to the hospital. The facility agreed to malignant destructive forces, who had jinxed her own family, a
take her every 3 weeks to the clinic for chemotherapy. Seven days sorcerer whose destruction was the only venue to liberate her
after the first course of chemotherapy she required hospitalization family from the sortilege.
for a neutropenic infection. Only 2 days later we could contact her
son that was annoyed of our call: ‘‘sir, she may even die’’ ‘‘well do
whatever you can, I will call you when I can.’’ Analysis of the Narrative
She did not volunteer any information about her family, but The patient lack of narrative clearly identified lifelong
we learned by calling her home out of state that she was living with emotional problems that were shared by the members of her family
an elderly husband and a handicapped son; a daughter, who could whether they were angry at her, overwhelmed by pain or by her
not be reached, lived nearby and supervised her care. own problems, the children did not manifest any affection toward
After the infection the adult living facility refused to take her; they were only anxious to damp her, and this narrative is not
her back unless she could be provided with a full time caregiver. unusual at all. How often my geriatric colleagues in New York City
New rounds of call to the son that acted surprised and annoyed of have been called on Friday afternoon to rescue an abandoned
the fact we could not provide the caregiver; eventually he agreed to demented person that the family had flown to La Guardia, from
pay for it. I saw her couple of more times; when we checked the different areas of the country! The patient’s own passivity revealed
condition of her lymphoma she had obtained a lesser response than a person used to suffer life as a painful imposition from outside
we had expected. Eventually the son took her away from the rather than to enjoy life as a personal adventure. To provide
facility and we do not know what happened with her. treatment for a life-threatening disease to a person who did not
Her treatment had been a challenge for me because of the seem to have a use for her own life is like trying to leverage a weight
mounting hostility toward this woman. Nurses and social worker without a fulcrum for the lever.
were nagging me the day of her visit. ‘‘It is not safe.’’ ‘‘You may Should I see another Mrs. Smith (and I certainly will), what
lose your license if she has a complication’’ ‘‘if you feel so strongly would I do different to render her treatment easier? The only think
about treating her why don’t you take her at home with you.’’ I would do differently is to prevent the mounting hostility toward
‘‘Look’’ was always my answer, ‘‘if I don’t treat her she will die; her. I will meet face-to-face with my team and tell them:
you don’t refuse to throw a life-saver to a drowning person just ‘‘Folks, this is going to be a difficult patient; despite our best
because you think she has a shitty life and does not have any social efforts we may not be able to gain her or her family’s allegiance;
support.’’ ‘‘Maybe she wishes indeed to die, hazarded the social our effort can be futile and even risky if her relatives decide to
worker; let’s ask her.’’ So we did: discharge on us the guilt they may feel for wishing her death. Yet,
‘‘Mrs. Smith you realize that you will die if we stop your there is no use to speculate why she is so negative and
treatment. Do you want for us to stop the treatment and to let you uncooperative. We have means to help her and we are duty bound
die?’’ to use all these means. I will not tolerate any disparaging comments
‘‘No.’’ related to Mrs. Smith and her family in my presence. Instead I do
‘‘She did not seem very convinced, murmured the Social encourage all of you to try to see something good, something worth
Worker; maybe she is scared to admit it.’’ saving, in Mrs. Smith.’’
An encounter with a patient like Mrs. Smith had also deeper
influence on my way to look at medicine. I am wondering whether
Analysis of the Case the medicine we are generating at enormous economic and personal
This case is presented to show how the lack of history does cost has as main goal to nurture the dream of immortality of the
not prevent the formation of a narrative by the observers and American middle class. Of course there have been dramatic medical
ultimately the lack of history is in itself a form of narrative. Indeed advances that have been beneficial to all people, such as pain
in this case there were at least 3 histories. My history as a person, control, safety of surgery, and childbirth. But what good would
my history as a physician, and the history of the social worker (and have done cytotoxic chemotherapy to a woman whose only goal in
maybe of the nurses). life appeared to subtract herself to the burden of living? I remember
My history as a person: I felt a strange allegiance toward this to have experienced this sensation the first time when I decided to
woman. I was grown in a house where people were not able to ventilate an old farmer with terminal pulmonary fibrosis during my
communicate. Had it not been for my spouse that had extracted first year of American training, in a Veterans’ hospital. I could not



help noticing that the USA government paid more money for the have done in cases of emergency requiring CPR or artificial
last week of life of this gentleman than for the previous 65 years of ventilation.
his life. The man was not given a choice: the government had not Always ask to the patient what role they occupy in their
given him a free school, did not help him raising his children, and community. I found it particularly rewarding dealing with
did not support him when the harvest had been destroyed, but religious ministers, maybe because I have a precise interest and
entitled him to have his death prolonged thanks to a machine, at a feeling for religious beliefs. In any case, I try always at the end of
cost that he could have not even been able to conceive. Until we the visit to ask the patient/minister to lead as in prayer, as an
discovered that it might accelerate cancer growth, we have been acknowledgment of their function and their talents that the
using freely erythropoietin in cancer patients, because it improved disease did not take away. Anedoctically, women homemakers
their energy levels and thus their quality of life. The drug cost are the ones from whom it is hardest to obtain a reaction. This
approximately $10,000.00/mo. I could not help wondering whether probably reflects a lifelong sense of lack of accomplishment
the patient’s quality of life would have not been more improved by bestowed upon homemakers by a society that value most power
receiving $5000.00 a month tax free. and economic accomplishment.
I cannot help doing what I am doing. I have been trained to I am planning to ask patients to utilize the waiting time in the
practice a privileged medicine, and at 65 I doubt of my ability of clinics to write their own history. If this project works, I will be
being retrained. I know I helped people to survive and people to able to establish what additional information can be obtained
die, so I have something to show for my profession. Yet the cases of from a ‘‘formal’’ autobiography and the value to implement it in
Mrs. Smith and the other Mrs. Smiths I met in the course of a 40- clinical practice.
year professional life have influenced my vision of my profession I always try to recreate my own narrative of the patient history.
and of me. As demonstrated in the case of Mrs. Smith this narrative may
Like all other social activities, the face of medicine is shaped provide important personal insight for the provider even if does
by the power that governs. In the United States this power is not benefit the individual patients.
represented by a wealthy middle class whose main value comes from Patient narrative is an opportunity to emphasize the importance
the wealth it can display and can waste. Not surprisingly then surgery of a value history, especially in the practice of oncology where
for breast preservation is privileged over emergency surgery, that imminent death is a realistic possibility. Nowadays death is
benefits most the have nots. Even worse, the medicine we practice largely managed, and the practitioner should not be caught
may hurt millions of people just to satisfy their delusions of being in without preparation for life/death decisions, such as the insti-
charge of their own health. Screening for prostate cancer2,3 is the tution of CPR or artificial ventilation. It is unfair to ask the
most egregious recent examples. Not too long ago thousand of patients and their loved one to express their preferences at a time
women suffered the complication of high dose chemotherapy and of crisis. As demonstrated in the case of the Indian chief,
peripheral stem cell rescue, billions of dollars were wasted, just to narrative is the opportunity to identify the patient values and
pursue a delusion with no scientific fundament: that more in particular what they perceive as their ‘‘life mission.’’ This
chemotherapy, more toxic treatment had to be more beneficial identification makes the discussion of life and death issues both
(y). What about the millions of man around the Western world who personal and realistic. Most practitioners should be able to
suffer the consequences of castration, including loss of libido, predict when the medical conditions may incapacitate the
osteoporosis, fatigue depression, hot flashes, anemia just for the patients from pursuing his/her mission and consequently the
satisfaction to see the value of their PSA drop down, even if prostate delay of death may be futile.
cancer will never kill them? I do not deny it; I am as responsible as References:
anybody else of these controversial practices. As these practices have 1. Lichtman SM, Balducci L, Aapro M. Geriatric oncology: a field
been enshrined in most treatment guidelines, had been christened coming of age. J Clin Oncol. 2007;25:1821–1823.
‘‘standard treatments’’ I may lose my license and my livelihood if I do 2. Jha V, Quinton ND, Bekker HL, et al. Strategies and
not follow them. Yet, when I meet Mrs. Smith I try my best to intervention for the involvement of real patients in medical
preserve her and the likes of her from the tortures of a type of education: a systematic review. Med Educ. 2009;43:10–20.
medicine that was not created for them. 3. Kumagai AK. A conceptual network for the use of illnesses
As a person, the history of Mrs. Smith reveals to me the narrative in medical education. Acad med. 2008;83:653–658.
importance to listen to the narratives of all my patients, to learn their 4. Schroeder FH, Hugosson J, Roobol MJ, et al. Screening and
language and through their language to identify what they really do prostate cancer mortality in a randomized European study.
need, even if they are unable or unwilling to reveal themselves. The N Engl J Med. 2009;360:1320–1328.
‘‘non-narrative’’ of Mrs. Smith and the narratives that were built on 5. Andriole GL, Grubb RL III, Buys SS, et al. Mortality results
her non-narrative made me aware that medicine is just a means that from a randomized prostate cancer screening trial. N Engl J
may hurt patients when it is foreigner to them. For a large portion, Med. 2009;360:1310–1319.
perhaps for the majority of Americans the medicine I have to offer is
similar to Champagne for people thirsting in the desert, caviar to
placate the hunger of a starving child.
Therapeutic Touch Practice and Research on an Inpatient
NARRATIVE IN MEDICINE PRACTICE Oncology and Bone Marrow Transplant Unit: Creating a
Medicare, the insurance company, the myth of technology Caring and Healing Environment
conjure to prevent the administration of personalized medicine, to Anne-Marie Barron, PhD, PMHCNS-BC*, and Amanda Bulette
identify their history through their on narrative. Outside of the Coakley, PhD, RNw. *Simmons College, Faculty Nurse Scientist; and
realm of qualitative research I believe it is still possible for w Massachusetts General Hospital, Northeastern University, School of
interested physicians to collect the narratives of their patients. Professional Studies, Boston, MA.
My personal techniques to include narrative in my medical Providing comfort and care to cancer patients are essential aspects
practice include of excellent oncology nursing practice. The purpose of this study is
Let the patient speak, especially during the first encounter. It has to describe the use of therapeutic touch (TT) in contributing to a
been established that the average time a physician listens to the healing environment on a fast-paced, highly acute inpatient
patient before interrupting him/her with targeted questions is 17 oncology and bone marrow transplant unit. The authors describe
second. Although not everybody may be as forthcoming as the the development of TT practice on the oncology unit and the
Indian chief, the majority of the patients enjoy the possibility to program of research they are conducting to guide the integration of
introduce themselves as patient, to share with the doctor what is TT in nursing practice. The authors will present the practice of TT
important to them. This is also the best opportunity to obtain a during the conference and offer participants the opportunity to
‘‘value history,’’ that is to learn what the patient would like to learn TT. Special consideration will be given to participants’



comfort in offering or receiving TT and cultural concerns and TT practitioner and offered to provide TT to the patient. The
implications related to the intervention. patient had a very dramatic response to the treatments and was
TT is a complementary healing modality that has been used and comfortable enough to engage with her family for several hours
researched by nurses for more than 20 years1–8 (and others). Since the after a treatment. The patient and her family were very grateful
time of Nightingale and before, touch has been a hallmark of nursing that TT offered comfort. The nurse who had requested the
care. Touch can be a powerful way of offering comfort to and consultation and other nurses on the unit who observed the
connection with patients. TT is an intervention derived from the laying benefits of TT for the patient requested training in TT.
on of hands that was developed by Kreiger5 based on the conceptual In response to the nurses’ request for TT training, Dr
framework of Martha Rogers.9 With TT, the hands help to transfer Barron collaborated with coauthor and colleague at the hospital,
energy from a person serving as a healer to another person, to help or Dr Amanda Bulette Coakley who is also a TT practitioner and
heal that individual.5,10 According to Krieger, ‘‘during TT the healer had been conducting research on TT since she completed her
acts as a human support system, their own health energy field dissertation on TT. Together they developed an educational program
providing the scaffolding to guide the repatterning of the healee’s for 9 of the oncology nurses on the unit. The nurses participated in a
weakened and disrupted energy flow. Such support is oriented toward 2-day workshop for education in TT, the standard set for beginning
stimulating the healee’s own immunologic system, for it is the healee TT educational programs (Nurse Healers—Professional Associates
who heals herself or himself.’’5 International). In the training, as in the practice of TT, there is
The Conceptual System of Unitary Humans9 is the framework that sensitivity always in relation to recipients’ willingness to accept TT
guides the TT intervention. Her framework describes the nurse/ and sensitivity to cultural concerns.1 Mentoring by expert TT
patient experience as a unitary, mutual, simultaneous, and dynamic practitioners was available after the workshop.
process, in continuous exchange with the environment. Within this
perspective, person (human field) and environment (environmental
field) are described as open exchanging systems. There are 4 critical HOW THE RESEARCH DEVELOPED:
elements in Rogers11 conceptual system: energy fields, open THE FOCUS GROUP
systems, pattern, and pandimensionality. Energy provides a sense A year after the TT training program, 6 of the 9 nurses
of the dynamic nature of humans and field implies unity. An energy participated in a focus group where they reflected their experiences
field typifies dynamic unities. offering TT to patients.15 Some of the comments that were made by
Energy fields are coextensive with the universe and are in constant the nurses who participated in the study include: ‘‘It is like giving
interaction and exchange with surrounding energy fields. The them a special procedure. I am not sure they are always relaxed,
environmental energy field is defined as all that is external to a but they like the special attention.’’ ‘‘It feels good when you can
given human field. The human energy field consists of the human help someone.’’
body, mind, emotions, and intuition.12 When one person interacts During the focus group, the nurses clearly identified TT as
with another there is an interaction of fields as one becomes helpful for patients in a number of ways, yet they also identified
interconnected with the other. The concept of an energy field that is several important obstacles to the offering of TT to their patients.
part of the human interactive environment is as old as recorded Notably, they described their inability to become centered, the first
history.13 Within this context, when a nurse uses TT with a patient, requirement for offering TT, as a significant hindrance. In addition
2 energy fields are interconnected in a mutual exchange. When this to the inability to center, the nurses also described the busyness
exchange is intentional and purposeful, there is mutual benefit or of the unit, the needs of their other acutely ill patients, and a
effect. Pattern is the distinguishing feature of each energy field and discomfort asking colleagues to cover their other patients while
consequently the source of its uniqueness.14 For Rogers all reality is they offered TT because of a perceived lack of legitimacy regarding
viewed as pandimensional, nonlinear, and without spatial or the value of TT on the unit. Despite clearly recognized benefits for
temporal attributes. the patients and the nurses themselves, the nurses were offering TT
Krieger, applying Rogers conceptual framework, identified 4 very infrequently.
scientific assumptions integral to TT (1) human beings are open
energy fields and the transfer of energy can be a natural flow guided
by intention; (2) anatomical symmetry guides the practitioner in THE SECOND STUDY: INTEGRATING TT ON THE
assessing energy patterns; (3) lack of energy balance can lead to INPATIENT ONCOLOGY AND BONE MARROW
illness and can be assessed in the energy fields that extend several TRANSPLANT UNIT
inches from the skin surface; and (4) human beings have the The focus group data were analyzed and presented to the
capacity for transformation.9 nursing leadership of the unit. The value of TT in offering comfort
and relief to their patients was appreciated. To facilitate the
integration of TT into practice on the unit a new administrative
HOW TT PRACTICE BEGAN ON THE UNIT structure with committed time blocks to offer TT was proposed. A
In 2002, Dr Anne-Marie Barron began working part-time as second study was designed to explore the experiences of nurses and
a psychiatric clinical nurse specialist on the inpatient oncology and patients on the unit when nurses had time preserved for the
bone marrow transplant unit at Massachusetts General Hospital. exclusive offering of TT.2 The research design included designating
There are 3 aspects to her role. First, she offers support to newly 4 hours a week for 12 weeks for the offering of TT. Two staff nurses
graduated nurses establishing their practices on the unit. The unit is on the unit offered the TT research intervention. These nurse
highly demanding and the need to develop both technical and interventionists were also available during the designated research
interpersonal skills is extraordinary. Second, Dr Barron is available time to discuss TT with staff nurse colleagues.
to the nursing staff for psychosocial consultation. Third, Dr Barron The patients who received TT in the research protocol were
integrates nursing research on the unit. interviewed the following day by 1 of the study coinvestigators not
Early in Dr Barron’s experience on the unit, a staff nurse offering TT. Most of the interviews were conducted by 2 staff
consulted with her on a patient who was in considerable pain nurses of the unit. The purpose of the interviews was to elicit the
because of metastatic disease to her bones. The patient herself was patients’ experiences of receiving TT to more fully understand
a retired nurse. She was physically quite distressed but found that the meaning and effects of TT from the patients’ perspectives. The
the side effects from narcotics dulled her cognitive capacity. She interviews were audio-tape recorded and transcribed.
knew that she was terminally ill and that death was not far off. She Sixteen women and 18 men became patient-participants in
had been refusing pain medication so that she could be fully present the study and completed the research protocol. The patients ranged
with her family during their visits. Her family and her nurses were in age from 22 to 77 years with an average age of 52 years. The
very concerned about her comfort. Her family was angry that the patient-participants had various cancer diagnoses, including
nurses could not offer pain control and the nurses were frustrated leukemia, lymphoma, myelodysplastic syndrome, Hodgkin disease,
because of the patient’s refusal of pain medication. Dr Barron is a multiple myeloma, osteosarcoma, biliary cancer, breast cancer,



testicular cancer, and head and neck cancer. Twelve of the patients that is different from the traditional biomedical approach. They
reported receiving some sort of energy intervention (acupuncture, reported the intervention as powerful, positive, and rewarding.
massage, Reiki, or qigong) before the study. One finding from the focus group that was surprising to the
After the intervention phase of the study, the nurse researchers was that the nurses, who had been providing TT to 3 or
interventionists and nurse interviewers participated in focus groups 4 patients during a dedicated block of time, requested that there be
that were audio-tape recorded and transcribed. The transcribed a TT support group on the unit for all the nurses who are offering
data from the patient-participant interviews, the interventionist TT to patients on the unit. The nurses reported that they needed to
focus group, and the interviewer focus group were analyzed using hear if they had been helpful to the patients as they offered TT.
content analysis. During the first phase of the analysis, the authors They also found it ‘‘lonely’’ to offer a TT treatment and then not
independently analyzed the data, line-by-line, and identified initial care for the patient or receive feedback from colleagues. The
categories of findings. Together they considered and refined the researchers attribute this need for support and feedback to the
categories and returned to the data to confirm the categories. The newness of this aspect of practice. Although the nurses involved in
authors presented their findings to a senior nurse scientist for offering TT clearly have expertise in relation to oncology nursing
further synthesis of the findings. Finally, the data and synthesis of skills, they were new to TT and assurance that they are doing
the data were shared with a fourth member of the research team for the TT ‘‘correctly’’ and that it ‘‘was helpful’’ to the patients is
a final confirmation of the accuracy of the findings. important in this phase of integrating TT into practice. Drs Barron
TT was viewed as an important intervention by the patients and Coakley have continued to be available for support of the
who received the treatment. They reported being able to sleep better, nurses offering TT on the unit. The next phase of TT integration on
needing less pain medication, and being more focused and able to the unit will be developed in collaboration with the staff and
concentrate on their disease and the decisions they had to make about nursing leadership on the unit.
treatment options. Some of the comments made by the patients who
received the TT treatment include: ‘‘It was very calming. You could
feel a sensation of putting her hands above your head, body part – INTEGRATING TT IN PRACTICE BEYOND
very quiet.’’ ‘‘y A feeling of controlled warmth moving all over the ONCOLOGY NURSING
body, soothing, restful, healing.’’ ‘‘It was like I was on cloud As interest in the work related to TT on the inpatient
nine y laying on a cloud.’’ ‘‘y I feel a lot more relaxed and I also feel oncology and bone marrow transplant unit grew, another unit, an
like today is the first day I had energy in probably six months y and inpatient cardiac interventional unit expressed interest in replicat-
the other thing I noticed was I was not nauseous from my medications ing the study and they also participated in the TT training session
last night. That is extraordinary y.’’2 and conducted the same research study. Nurses on that unit also
TT was also described as a powerful intervention for the staff had committed time to do TT and other nurses interviewed the
of the unit who were involved in the study. Some of the staff reported patients who had received TT on the following day. The nurses,
feeling empowered by having an intervention they could offer to their who had offered TT to the patients, participated in a focus group
patients that was purely a nursing intervention to help with and expressed similar experiences and feelings to the nurses on the
discomfort and anxiety. The nurse interventionists described a benefit inpatient oncology and bone marrow transplant unit. Data from
for them in offering TT. They felt an enhanced sense of peace and transcribed interviews with the patients and the nurse interven-
relaxation themselves after offering the research intervention. They tionist focus group are currently being analyzed. Initial analysis
described an important sense of satisfaction with the connection they reveals that nurses on both units view TT as an intervention that
experienced with patients receiving TT and felt that the deeper allows nurses to provide caring and comfort to patients within a
aspects of nursing practice were apparent to them as they offered TT. deeply connected relationship.
The nurse interviewers described a better understanding of how TT
was helpful to patients and they had a sense of pride in being able to
participate in a nursing study in a significant way. CONCLUSIONS
A number of nurses on the unit were directly engaged in the TT research and practice has contributed to the creation of
research process. Beyond the 4 nurses who were the research a caring and healing environment on the inpatient oncology and
interventionists and research interviewers. A number of staff nurses bone marrow transplant unit and the cardiac intervention inpatient
participated in the design and planning of the research. There was a unit at Massachusetts General Hospital. The patients and nurses
great deal excitement generated on the unit in relation to have clearly described benefits of the intervention for promoting
conducting nursing research. comfort, peace, and sense of wholeness and connection. The
Three key findings emerged from the data: TT was viewed as introduction of nursing research to explore the integration of TT in
a vehicle for comfort, caring, and presence; there was a shift to the practice has fostered a sense of inquiry, scholarship, pride, and
personhood of the patient and reawakening of the essence of excitement.
nursing; and the power of linking practice, theory, and research References:
was illuminated.2 1. Aghabati N, Mohammadi E, Esmaiel Z. The effect of
therapeutic touch on pain and fatigue of cancer patients
undergoing chemotherapy. eCAM Advance Access. 2008. pp
1–7. Available at: http://ecam.oxfordjournals.org/egi/reprint/
TT IN PRACTICE: BEYOND THE SECOND STUDY nen006v1. Accessed February 17, 2009.
As TT became more of an accepted practice on the inpatient 2. Barron AM, Coakley AB, Fitzgerald EM, et al. Promoting the
oncology unit, additional staff requested to attend a training integration of therapeutic touch in nursing practice on an
session. Drs Barron and Coakley held another 2-day training inpatient oncology and bone marrow transplant unit. Int J
session for 3 nurses on the unit. After the training session, the Hum Caring. 2008;12:81–89.
nurses who had participated in training had blocks of dedicated 3. Heidt P. An investigation of the effects of therapeutic touch on
time for the offering of TT, and after 7 months of being TT anxiety of hospitalized patients. Dissertation Abstractss Int.
providers participated in a focus group to describe their experiences 1979;40:5206B (University Microfilms No. 8010289).
with offering TT to their patients. The data from the focus group 4. Jackson E, Kelley M, McNeil P, et al. Does therapeutic touch
were analyzed and the findings shared with the TT practitioners help reduce pain and anxiety in patients with cancer? Clin
who attended the focus group. Like their colleagues before them, J Oncol Nurs. 2008;12:113–120.
these nurses found TT to be helpful in terms of alleviating stress, 5. Kreiger D. Accepting Your Power to Heal: The Personal
discomfort, and other physical conditions and also a vehicle to Practice of Therapeutic Touch. Santa Fe, NM: Bear and Co.
assist patients to relax. The nurses found that by offering TT they Publishing; 1993.
felt they were able to connect with their patients in a different way. 6. Kreiger D. Therapeutic Touch as Transpersonal Healing. New
Through this connection they were able to help patients in a way York: Lantern Books; 2002.



7. Macrae J. Therapeutic Touch: A practical guide. New York: Develop best practices and standards of care and assist in the
Alfred Knopf; 1987. integration of these practices in the provider setting;
8. Quinn JF. An investigation of the effects of therapeutic touch Educate health care professionals, students, and the public—
done without physical contact on state anxiety of hospitalized including governmental leaders—about the need for these
cardiovascular. Dissertation Abstractss Int. 1982;46:1797–179B services throughout the country;
(UMI No. DA 82-82-788). Provide the nation with a model of care for children that takes
9. Rogers ME. An Introduction to the Theoretical Basis of advantage of the resources of the entire community, including
Nursing. Philadelphia: Davis; 1970. research and teaching hospitals, universities, and community-
10. Mulloney SS, Wells-Federman C. Therapeutic touch: a healing based service organizations;
modality. J Cardiovasc Nurs. 1996;10:27–49. Become financially self-sustaining within 3 years of inception;
11. Rogers ME. Science of unitary human beings. In: Malinski Advocate for the design and funding of a rationale system of
VM, ed. Explorations on Martha Rogers’ Science of Unitary financing end-of-life-care for children who are dependent on
Human Beings. Norwalk, CT: Appleton-Crofts; 1986. private and public sector insurance such as Medicaid and/or
12. Nurse Healers Professional Associates International (n.d.). SCHIP.
Standards for Therapeutic Touch Practitioners. Available at: The poster also incorporates the current demographic data to date
http://www.therapeutic-touch.org/newsarticel.php?newsID=4. of the population serviced by this program.
Accessed January 30, 2008.
13. Hover-Kramer D. Toward an understanding of healing. In:
Hover-Kraemr D, Mentgen J, Scandrett-Hibdon S, eds.
Healing touch: A Resource for Health Professionals. Boston, Current Palliative Care Practice in a University Hospital
MA: Delmar Publishers; 1996. Kamer Mutafoglu, MD. Department Pediatric Oncology, Dokuz
14. Sarter B. The Stream of Becoming: A Study of Martha Rogers’ Eylul University, Institute of Oncology, Izmir, Turkey.
Theory. New York: National League of Nursing; 1988.
15. Coakley AB, Barron AM. A study of the experiences of nurses
providing therapeutic touch in an oncology setting. Poster INTRODUCTION
session presented at the Scientific Sessions of the Eastern In this study, the palliative care (PC) practices that can
Nursing Research Society, New York, New York. 2005. currently be provided to cancer patients in Dokuz Eylul University
Hospital, Izmir/Turkey, are briefly described.

THE SETTING
District of Columbia Pediatric Palliative Care Collaboration
Our university hospital is located in a large urban setting, 1
Susan Rogers, MS, BSN, RN, CHPN. Executive Director, DC of the 4 tertiary centers in the third biggest city of the country,
Pediatric Palliative Care Collaboration, Washington, DC. serving cancer patients from all around the Aegean region, having
The Poster describes the development and infrastructure of the almost 10 million populations. The focus of hospital care is on
District of Columbia Pediatric Palliative Care Collaboration diagnosis, investigation, treatment, and cure. In this 939-bed
(DCPPCC), a formal partnership of 2 hospitals in the District of university hospital, there is a separate oncology hospital with 52
Columbia—Children’s National Medical Center and The HSC beds (25 hematology, 12 oncology, 8 pediatric oncology beds, and
Pediatric Center and one hospice, Community Hospices—that have 7 for BMT patients). The total number of available beds is far from
committed to combining resources, space, and talent to develop a filling the need even for patients undergoing curative treatment.
system-wide program to provide and evaluate inpatient consulta- Whenever available, a very limited number of beds from the
tion for pain and symptom management in critically ill children; internal medicine services are being used for oncology patients. The
counseling and support to families with children facing life- number of new cancer patients per year is 1600, 350, 55, and 1300
threatening illnesses; a full range of home hospice care for children for the oncology, hematology, pediatric hemato/oncology, and
(with eventual inpatient care); and follow-up bereavement and radiation oncology departments, respectively. All oncology depart-
counseling services for parents and siblings of the deceased child. ments are understaffed in terms of nurses and junior physicians.
The poster reviews the political and economic challenges posed by Almost all of the oncology specialists are faculty members with
the development of a regional pediatric palliative care program and additional teaching responsibilities and some administrative duties.
the barriers to collaboration, the referral process, education plan,
and the outcomes measures, based on best practice.
The poster includes the vision of the DCPPCC to be a regionally PALLIATIVE CARE SERVICES
based, nationally recognized pediatric palliative care collaboration that Currently, the center does not have a PC program. Palliative
promotes excellence in care for children with life-limiting illnesses and care services are provided by the oncology teams consisting of
their families through robust clinical communication, outcomes-based physicians (oncologists/hematologists/radiation oncologists) and
research, education and advocacy, standardization of care across nurses. These physicians and nurses are not specialized in PC. One
settings, access to care across settings, and health care navigation. medical oncologist has experience on PC but she is swamped with
The poster describes the mission of the DCPPCC to create an work in medical oncology, so is not practicing PC exclusively. The
environment supportive of a health care delivery system that center cannot routinely incorporate expert care in the evaluation
provides optimal care to children with life-threatening illnesses and and relief of psychologic symptoms and social problems. There are
their families in the District of Columbia metropolitan area across no mental health care workers and social workers working as part
the spectrum of care settings from inpatient to home-based. In of the oncology teams. The psychiatry department is not able to
support of this mission, the DCPPCC is committed to professional provide programmatic support for cancer patients. Consultation
and public education, advocacy for this population, and research from the psychiatry department can be provided for inpatients but
that will develop (identify) standards and best practices for state of this is not a dedicated approach. A consultation-liaison psychiatry
the art palliative care for children in a consultative role. service was initiated to tackle this problem. But shortage of staff
The specific objectives of the program are also included and lack of administrative support had impeded the progress.
Promote comprehensive palliative and hospice care for children, Inpatient PC facilities: The center incorporates routine PC
and their families, in the District of Columbia metropolitan area management for all physical symptoms such as pain, nausea/
who are facing life-threatening illnesses; access to these services vomiting, mucositis, constipation/diarrhea, nutritional problems,
wherever they most meet the needs of these children and their etc. when the patient is hospitalized. However, these interventions
families, including hospitals, ambulatory clinics, respite facilities, are not part of a coordinated service. Standardized documentation
and in their homes; systems for inpatient symptom stabilization are not routinely used.



Only items relevant for the assessment of nutritional supportive be used for end-of-life (EoL) care. There is no programmatic
care have been regularly documented in inpatient wards. bereavement support.
Outpatient palliative care facilities: There are no coordinated Education: The medical and nursing curriculum contains
PC services to outpatients, their families, and their primary care some issues on PC, including symptom stabilization and commu-
physicians. During regular investigations for the ongoing anti- nication skills, scattered within the curriculum. A scheduled
cancer treatment or at the follow-up visits at the outpatient clinics, clinician education program to improve the PC services do not
patients are also evaluated for the PC needs, mostly focusing the exist so far. Only some PC courses, and a number of supportive
physical sufferings. Adult oncology and hematology outpatient care courses are being held for both nurses and physicians within
clinics do not have nursing staff. There is a day treatment unit with the context of oncology meetings.
24 beds and 6 to 8 nurses. Only prescheduled chemotherapy courses Research: There is lack of research to determine quality of
are given to 80 to 100 adult oncology patients per day. Sometimes, life (QoL) and PC needs of cancer patients and their families.
1 or 2 beds from this unit can be used for some palliative
interventions during work hours. The radiation oncology depart-
ment has a day supportive care unit with 2 nurses. These nurses PALLIATIVE CARE FOR CHILDREN AND
give supportive care in addition to education regarding the toxic ADOLESCENTS
side effects of radiotherapy. The center does not have a pediatric PC program. The
The outpatients or their close family keep in touch with physicians and nurses, who are not specifically educated in PC,
their physicians by brief talks or phone calls to manage the provide conventional palliative services for children and adoles-
palliative requirements. Understaffing (both medical and nursing cents. Owing to the smaller number of pediatric cancers when
staff) and bed shortage are significant barriers to meet the need. compared with adult cancers, the pediatric oncology/hematology
Time constraints during the clinical encounter oftentimes impede professionals have the chance to keep in close contact with the
quality communication, particularly in areas that tend to be patients and the families during the entire cancer trajectory,
difficult to discuss. including long-term follow-up. The management of physical
Nutritional support: Cancer patients are regularly offered problems is routinely provided in both inpatient and outpatient
either enteral (oral, tube-feeding, gastrostomy) or parenteral nutrition clinics, but standardized documentation systems for symptom
(via central venous cathethers/ports) support throughout the whole stabilization are not routinely used. The psychosocial issues remain
disease trajectory. Every inpatient clinic has its own dietitian. There is a major problem as there are no mental health workers and social
a well-established nutrition support unit and a compounder unit workers as part of the treatment team. When patients are at home,
within the university hospital. In addition, expert nutritional support they can call the physician in charge (a pediatric oncologist is on
can be provided to patients by a nutrition specialist whose main area call on a monthly basis 7/24) and some problems can be managed
of interest is cancer and molecular nutrition. The nutritional through telephone consultations. Otherwise they need to take the
supportive care has been regularly documented using subjective child to our hospital. They sometimes take the child to a local
global assessment forms at the inpatient services. hospital if they do not live in close vicinity. Pediatric oncologist in
Pain unit: There is a well-established pain unit within the charge keeps in touch with the physician at that hospital until it seems
anesthesiology department. In case of refractory pain, this unit that the problem can be managed over there. If not, they are asked to
provides services to both inpatients and outpatients. They also help refer the child to our center. However, most families prefer taking the
to manage PCA interventions at the request of the oncology staff. child directly to our center in case they encounter a problem.
However, this unit and the oncology services do not have a regular EoL Care: The lack of home-care services is the major
cooperation. In terms of pain management, lack of immediate barrier for the families who wish to take their child home.
release oral morphine preparations, lack of high dose parenteral Although pediatric oncologists always keep in touch with these
formulas required for intravenous infusions, lack of uniform families, it is almost impossible to meet all the needs of the patient
availability of opioids in every pharmacy store, and maximum dose and the family in case the patient is not hospitalized. Therefore,
limitations for prescribing opioids are important issues that most families prefer the hospital setting as the place of death. The
interfere with optimum pain management. staff shortage and limited number of beds enable the team to meet
Palliative treatment modalities: Palliative chemotherapy, all the hospitalization demands at the EoL; however, every effort
radiotherapy, and invasive palliative procedures can be provided has been made to help these families. Some side beds from the
whenever needed. Various open, endoscopic, interventional radi- general pediatrics wards, even from the pediatric intensive care
ology, and bedside invasive palliative interventions including unit, are being used for palliative purposes at the EoL.
gastric/biliary bypass, ascites/pleural effusion drainage, pleurod-
eses, trigger point injections, or more complex neurolytic blocks
and intrathecal infusions can be offered to enable terminally DISCUSSION
patients to return home. Our center does not have a PC program and a coordinated
Home care: Most of the terminally ill patients die at home PC service. Currently offered palliative interventions are limited to
especially if they do not live within the city. Neither the university the individual efforts and devotion of hardworking physicians and
nor the government hospitals in the country provide a home-care the nurses, mostly targeting the physical sufferings. The psycho-
program. Family members are the caregivers. There is not a social needs remain almost unmet as there are no mental health
programmatic support for families. The oncology staff tries to give care workers and social workers as part of the oncology team. As a
backup to coordinate the PC by telephone consultations. Occa- result, the palliative interventions provided by the physicians and
sionally some patients can afford a private nurse who takes care of nurses remain as a fragmented approach to care. The recent
the patient according to these consultations. Respite care for definition of PC by the World Health Organization (WHO) states
ambulatory patients who are unable to cope at home or in cases of that PC is the active total care of patients whose disease is not
family fatigue cannot be offered by the hospital. responsive to curative treatment. Control of pain, of other
Hospice care: There is no hospice care within the country. symptoms, and of psychologic, social and spiritual problems, is
Emergency care: Some of the terminally ill patients with paramount. The goal of PC is achievement of the best QoL for
complex problems seek care in the emergency center. The patients and their families1 because of the lack of research on the
emergency service can provide urgent care of inadequately relieved, met versus unmet needs and the QoL of our cancer patients, it is
life-threatening physical symptoms only. not possible to define the magnitude of the problem during
End-of-life Care: Most patients die at home without different phases of the disease trajectory. Standardized assessment
receiving even basic palliative interventions. The hospital environ- and documentation methods, which could also help to document
ment is not designed for PC and there is shortage of beds. Some the efficacy of currently provided conventional interventions, are
terminally ill patients are hospitalized, but they have to spend their not routinely used during the conventional care currently offered.
last days in the busy treatment wards. There are no side rooms to These methods also would help to identify various problems



at an early stage and would result in enhanced nurse-physician professional levels. According to the WHO, the main priority of
discussions on the problem.2 The current definition of PC by the cancer centers in low-income and middle-income countries should be
WHO emphasizes that many aspects of PC are also applicable the provision of PC for terminally ill cancer patients.13,14 In countries
earlier in the course of illness in conjunction with therapies such as with limited resources, emphasis on symptom control, especially pain,
anticancer treatment. Palliative care should be integrated early in should be of highest priority, and home-based PC should be
the course of illness, and these interventions should be part of the integrated into the health-care system.13,14 Countries have an
active total care while patients receive acute care.3,4 obligation to progressively implement PC services, which, according
Staff and bed shortage are the main barriers to offer even to WHO, must have ‘‘priority status within public health and disease
basic interventions to every patient during the whole disease control programmes.’’1 Countries must ensure an adequate policy
trajectory. Currently, inpatients have been receiving more attention and regulatory framework, develop a plan for implementation of
in terms of palliative needs in our center. However, the percentage of these services, and take all steps that are reasonable within available
outpatients outnumbers the inpatients as we have been encountering resources to execute the plan.15 The Human Rights Watch report
significant bed shortage. The lack of a dedicated team for PC, in recommends governments around the world to establish, where this has
hospital and in the community, put a lot of strain on physicians not yet been done, a working group on PC and pain management. This
working at the busy in-patient and outpatient clinics. They need to working group should include all relevant actors, including health
make numerous unplanned talks with the patients or their families. officials, drug regulators, healthcare providers, nongovernmental PC
Time constraints during the clinical encounter distract physicians or providers, and academics, and develop a concrete plan of action for the
impede initiation of conversations in areas that tend to be difficult to progressive implementation of pain treatment and PC services.15
discuss. Moreover, the junior staffs, who are busy by the mission ‘‘to Failure to attach adequate priority to developing PC services within
cure cancer’’ express significant stress regarding the PC interventions healthcare services will violate the right to health.
that they have to provide for the terminally ill patients (personal References:
communication with the oncology staff). 1. World Health Organization. National Cancer Control Pro-
There is need for a PC program to improve symptom grammes: Policies and Managerial Guidelines. 2nd ed. Geneva:
control which would result in fewer primary care and urgent care World Health Organization; 2002.
visits, without an associated increase in specialty clinic visits, 2. MacDonald N. Modern palliative care: an exercise in preven-
emergency department visits, number of hospitalizations, or tion and partnership. Semin Oncol Nurs. 2005;21:69–73.
number of days hospitalized.5,6 A PC team offered consultations 3. Murray SA, Kendall M, Boyd K, et al. Illness trajectories and
and direct services to patients, their families, and their primary care palliative care. BMJ. 2005;330:1007–1011.
physicians would provide aggressive symptom management and 4. Elsayem A, Swint K, Fisch MJ, et al. Palliative care inpatient
comprehensive care to the large percentage of outpatients who are service in a comprehensive cancer center: clinical and financial
still pursuing aggressive management or cure of their disease.7 outcomes. J Clin Oncol. 2004;22:2008–2014.
The current mission of the hospital conflicts with providing 5. Lidstone V, Butters E, Seed PT, et al. Symptoms and concerns
comprehensive PC to all patients with a life-threatening disease. amongst cancer outpatients: identifying the need for specialist
We need to develop a new vision statement and a strategic plan to palliative care. Palliat Med. 2003;17:588–595.
establish an effective PC program to integrate into all cancer 6. Rabow MW, Dibble SL, Pantilat SZ, et al. The comprehensive
treatment services to ensure optimal symptom control and provide care team. A controlled trial of outpatient palliative medicine
the best possible QoL for the patients and their families. Although consultation. Arch Intern Med. 2004;164:83–91.
developing a PC program, collaboration with the administrative 7. Espe P, Hampton JN, Finn J, et al. A new concept in cancer
staff is mandatory as it is impossible to succeed the mission of care: the supportive care program. Am J Hosp Palliat Care.
providing good quality palliative and EoL care without adequate 1999;16:713–722.
funding. Funding influences not only what interventions and 8. Chiarella M, Duffield C. Workforce issues in palliative and
therapies might be available but also staffing levels.8 end-of-life care. J Hospice Palliat Nurs. 2007;9:334–341.
Although the evidence regarding the effectiveness of specia- ´ ´
9. Garcı´ a-Perez L, Linertova R, Martı´ n-Olivera R, et al. A
lized palliative care (SPC) in improving QoL, satisfaction with care, systematic review of specialised palliative care for terminal
and economic cost is limited, there is some evidence of improved patients: which model is better? Palliat Med. 2009;23:17–22.
effectiveness of SPC in comparison to conventional care, and all 10. Zimmermann C, Riechelmann R, Krzyzanowska M, et al.
systematic reviews drew the conclusion that SPC is more effective Effectiveness of specialized palliative care. A systematic review.
than conventional care.9,10 Every effort should be made to establish a JAMA. 2008;299:1698–1709.
SPC program within the hospital. A diffusion of innovations model 11. Oldenburg B, Parcel GS. Diffusion of innovations. In: Glanz
could accomplish this by first educating a core group and then having K, Rimer BK, Lewis FM, eds. Health Behavior and Health
the group disseminate the knowledge to others.11 Until a hospital Education: Theory, Research, and Practice. San Francisco:
SPC team becomes available, the first steps to establish a PC program Jossey-SanBass; 2002:312–334.
in our hospital should focus on increasing the awareness of health 12. Bingley A, Clark D. A comparative review of palliative care
professionals on modern PC concepts and expanding the knowledge development in six countries represented by the Middle East
and skills of the currently available oncology professionals. Integra- Cancer Consortium (MECC). J Pain Symptom Manage.
tion of comprehensive PC services to the hospital care can serve as a 2009;37:287–296.
solution for only a very small portion of the unsolved problems. In a 13. Sikora K, ed. World Health Organization Programme on
country with no home-care programs and hospices, access to PC Cancer Control: Developing a Global Strategy for Cancer.
services during the whole disease trajectory is impossible. Most of the Geneva: WHO; 1998.
adult cancer patients die at home, lacking even basic palliative 14. World Health Organization. Cancer Pain Relief with a Guide to
interventions including pain management. We have to provide them Opioid Availability. 2nd ed. Geneva: WHO; 1996.
a respectful EoL period at home in a supportive atmosphere that 15. The Human Rights Watch Report, March 2009: ‘‘Please, do
ensures good pain and symptom control. This mission cannot be not make us suffer any morey’’ Access to Pain Treatment as a
accomplished without workforce and service planning being under- Human Right. Available at: http://www.hrw.org/en/reports/
taken as a matter of urgency by the national health policy decision 2009/03/02/please-do-not-make-us-suffer-any-more.
makers. Palliative care development and services were reviewed in the
6-member countries of the Middle East Cancer Consortium,
including Turkey, and considerable barriers to service development
were identified.12 The key problems were a lack of secure funds and Helping Families With Dying Infants in the Neonatal
government support, inadequate professional training programs, Intensive Care Unit: A Healthcare Professional Role
opioid phobia in professionals and the public, and a lack of Amani Ali Babgi, MD. Princess Noorah Oncology Center, KAMC-
awareness and understanding of PC needs at public, government, and WR.



With recent advances in technology, medicine has played a role in patient or day care units. According to the ministry of health
saving and prolonging the lives of many infants, including those (MOH) statistics there are 75 beds in oncology departments in
with extreme prematurity and congenital anomalies, who in MOH hospitals; represent 2.7% of the total number of beds
previous decades would have died much sooner after birth. With available, and 60 beds in daily care departments with an occupancy
these advances, these infants often live much longer and require rate at 231.8%. There is no hospice or bereavement follow-up care
more complex care due to changes in the requirements of care for available for patients or their families. Despite the fact that the
these infants. Palestinian culture is one of the cultures that respect and care for
It is remarkable that many of these infants survive their childhood the elderly, but at the end of life, when the load of symptoms is
and go on to live long and fruitful lives. However, there are some high, most of the patients are care for at hospitals, and usually die
infants for whom the future is less favorable and who require there, because the families are not able to care for their patients,
extensive care as their quality of life and physical condition and as there is no system for home care available for the Palestinian
worsen.1 patients, and if it is available it is available in limited places and on
These infants and babies are considered as ‘‘born dying,’’ which private bases that are expensive and not affordable to the majority
brings birth and death into close proximity.2 This picture presents a of patients (GPD per capita = $1100 as 2007 estimates). We
struggle for both the families of these infants, and, the healthcare conducted a needs assessment survey within the only 4 facilities
professionals dealing with these infants on daily basis. that provide care for the oncology patients in the West Bank and
The unique problems of neonates with unresolved terminal were filled by the direct healthcare providers. The results were
conditions may cause healthcare professionals to struggle in expressing the fact that there is no palliative care service available
properly caring for these children, they must wrestle with ethical for cancer patients or their families, absence of organizations
and legal decision making regarding their patients’ care. They must strategic planning for palliative care, no presence of educational
deal with all of these issues without, in many cases, the educational resources for palliative care, no presence of communication or
background and guidance to respond as they would wish. They consultation to the clergy man, absence of bereavement support
struggle with responding adequately to the emotional devastation group, no active follow-up for the patient and the family, no
to parents and siblings, as well.1,3,4 standards for palliative care service or training programs in
Families of these infants might have more time to anticipate their palliative care, no home care service for palliative care, absence
child’s death and make known their wishes and desires about end- of community awareness for palliative care, and absence of
of-life care. What little time these families have to spend with their national standard for palliative care.
newborn babies is precious; if it is missed, it is gone forever. When
families have not had time to plan for these moments, health
professionals must be ready to guide them.2,5
In such situations, as a healthcare professional, what can we do to INTRODUCTION
help these families and help us as well, being a healthcare Statistics revealed 8106 new cancer cases (2000 to 2005) in
professional to ease the situation, make decisions, and cope with the west bank (with 948 cancer cases in Bethlehem district), with
it. Hopefully, this lecture will provide some enlightment and tools 3471 deaths. This is an indicator of the problem of high mortality
to the healthcare professionals to deal with these situations. rate among cancer patients in Palestine, which means that most of
References: the cancer patients are diagnosed at the end stage of the disease.
1. Rogers SK, Babgi A, Gomez CF. Educational Interventions in Moreover, most of the cancer patients are diagnosed at the
End-of-Life Care: Part I: An Educational Intervention Re- end stage of the disease (5550 cases) representing 68% of the total
sponding to the Moral Distress of NICU Nurses Provided by an cases, which means that they are terminally ill and at their end of
Ethics Consultation Team. Adv Neonatal Care. 2008;8:56–65. life, the thing that means that those patients are not early detected
2. Stokowski, Laura A. Palliative care and neonatal loss: everyday and no more in need for curative care that is no more applicable for
miracles. Highlights of the National Association of Neonatal them, but indeed in need for palliative care to live comfortably and
Nurses (NANN) 20th Annual Conference. Release date: free of pain.
January 18, 2005. Retrieved on July 20, 2007: http://www. In contrast, as an example, there are 1113 breast cancer
medscape.com/viewprogram/3661; 2004. cases representing 27% of female cases and 14% of total cases (the
3. Truog RD, Meyer E, Burns JP. Toward interventions to most common cancer between females), and this indicates the need
improve end-of-life care in the pediatric intensive care unit. for education and early detection for cancer (2000 to 2005,
Crit Care Med. 2006;34:S373–S379. Palestinian National Cancer Registry).
4. Yam BM, Rossiter JCA, Cheung K. Caring for dying infants: Our idea is new in cancer field in WB because all the time
experiences of neonatal intensive care nurses in Hong Kong. the trend of care was to cure cancer patients rather than to educate
J Clin Nurs. 2001;10:651–659. and palliate, thus the dream about creation of a specialized
5. Moro T, Kavanaugh K, Okuno-Jones S, et al. Neonatal end-of- organization in Palestine that should handle the issue of education
life care: a review of the research literature. J Perinat Neonatal on early detection and palliative care, and the desperate for being a
Nurs. 2006;20:262–273. part of the Palestinian healthcare system increased in its intensity.
Al-Sadeel Society is a non-governmental organization,
registered under law Number 1 of Charitable Societies and Non-
governmental Associations, 2000, by the Ministry of Interior of the
Palliative Care Situation in the Palestinian Authority Palestinian National Authority (PNA) under License Number (BL-
Amal D. Khleif, RN, BSN, ON. Al-Sadeel Society, Palestinian 3262-M). It was registered officially in May 2008 while currently its
National Authority, Bethlehem, West Bank. activities are based mainly in the Bethlehem area.
Abstract: Palliative care is a very new concept in Palestine. In fact, Al-Sadeel Society is the first and only registered Palliative
it is still not applicable or provided within the Palestinian Care Society in the PNA. The society’s vision is that life is a gift
healthcare system. However, Al-Sadeel Society had organized a from God, and therefore, it should be kept pain free as much as
1-day workshop in Bethlehem on November 2008 for the health possible, using updated knowledge and skills. The Society’s
professionals from the governmental and nongovernmental sectors activities are aimed to be free and affordable to patients who need
to initiate and introduce the idea of palliative care for the first time them, and not only to those who are able to pay for them.
in Palestine. The general population of Palestine is approximately The mission of Al-Sadeel Society is to alleviate the pain and
2.4 millions (2007), with a life expectancy of 74.3 years of age, the suffering of terminally ill cancer patients by providing professional
death rate is 3.7 per 1000 population, having 8910 deaths a year. nursing and palliative care along with care to the families by means
Deaths due to cancer were 2305 in 5 years (1999 to 2003), whereas of medical, social, emotional, and psychologic approaches. In this
5542 new cases were newly diagnosed in the same period. Health way we wish to provide comfort till the very end and to preserve the
services available for cancer patients are hospital units either in- dignity of the suffering patient.



The strategic plan of Al-Sadeel Society is to create a home- final component included the provision of chemotherapy drugs for
based palliative care and Hospice center. Moreover, the society patients during the center’s first year of operation, and the
plans to become the leading organization in the education and purchasing of specific equipment for procedures including colono-
training of palliative and hospice care in the Bethlehem area and scopy and proctoscopy.
the PNA at large. Women receive many services at Beit Jala oncology
The overall goal for Al-Sadeel Society is to maintain quality department, including breast examinations.
of life for the terminally ill cancer patient within the family. This The Director of Beit Jala Hospital expressed concerns
can be achieved through though for the high number of cancer cases among women. He cites
1. Spreading awareness among the public regarding the impor- limited early detection as one of the main reason for the high
tance of early detection to decease the burden of the disease on number of fatalities among cancer patients.
the community. ‘‘Unfortunately most patients come to us with late stage
2. Training of professionals and education of the caregivers and cancer. Some women in particular are afraid to go to the doctor as
the public. they do not want to face the prospect of being ill. So they delay it
3. Home-based hospice and palliative care and supplies avail- and thus early diagnosis and optimal treatment become impossible.
ability. There is a great need for more education and awareness-raising on
4. Psychosocial and emotional support for the patient and the the importance of early detection and regular screening’’ explained
family using support groups and survivor volunteers. The Director of Beit Jala Hospital.
5. Collaboration with other organizations in the field of cancer
care.
6. Developing projects related to palliative care services. DESCRIPTION OF THE STRUCTURAL PROBLEM
In fact, a need assessment survey for Palliative care in WB Virtually, the main problem is revolving around lack of
hospitals was conducted by the society. Analysis proved the critical affording palliative care services to Palestinian cancer patients
need for affording palliative care services all over WB districts. which directly affect their quality of life because of deferring
Therefore, we intended to start at appoint firstly at Bethlehem thinking about initiation of establishing a hospice center to serve
where most volunteers are from. patients by key word personnel that might be due to lack of
Bethlehem town is located five and half miles from awareness concerning the crucial role of finding out such places
Jerusalem. It has 176,235 inhabitants, half of whom are Moslems besides the shortage of healthcare providers in cancer field either
and half are Christians. Beit Jala and Beit Sahour, the 2 due to financial problems or absence of voluntarism.
neighboring sister towns, have 13,000 and 12,000 inhabitants, Palestinian statistics revealed a high mortality incidence rate
respectively. Indeed, illiteracy percentage in Bethlehem compared among cancerous patients as most cases are discovered at late
with the total governorates in west bank equals 5.7% whereby 190 stage. The government plays an important role in the delay process
inhabitant in Bethlehem out of 1730 from all west bank districts of not executing such project as it is not involved in their
have finished diploma study or higher in Life Science programs in priority ladder yet. The trend is still directed toward cure rather
addition to 1760 out of 16,680 have Diploma or higher study in than palliative care in late stages of cancer. Dispensing morphine
health programs. About 38,481 of Bethlehem’s inhabitants are for patients is still in debate, admitting patients in late stages
employees of which 1736 work in health and social sectors and to hospital wards is considered a burden so most of the patients
3961 work in education department (Palestinian Central Bureau of are fired out to their houses despite their need to be treated.
Statistics, 2008) (http://www.pcbs.gov.ps). Some of non-governmental institutions take their own responsi-
As it happens, Beit Jala Governmental Hospital is bility of spreading information of the early discovery of cancer
considered as one of the important oncology hospitals located in besides affording mammogram as a screening test with little fees in
the Bethlehem district of bedding capacity around 125. This return.
impressive hospital still retains the foundations of its original In addition, most of the healthcare providers in Palestine
structure, which date back to the early 20th century, when it was who work in cancer units need training and education concerning
founded by a German doctor serving the local community. providing patients with palliative care as there is no curriculum
Since then, the hospital has expanded to now cater for some present to address problems and the effective solutions suggested
170,000 inhabitants in Beit Jala and surrounding villages, with for them either in medical or nursing schools.
others coming from the far reaches of the West Bank. Beit Jala Most nurses get terrified when they are asked to work
Hospital caters for the needs of most illnesses, although as with at cancer units or even handle the cytotoxic drugs. Govern-
most West Bank medical facilities, some cases are referred outside mental hospitals do not own vertical laminar flow devices
home—to Israel, or a third country—for specific treatments. besides most of the personal protective equipments that are
In 2001, UNDP/PAPP with funding from the Italian needed during cytotoxic drug preparation and administration.
Government, initiated a US$1.5 million project that established Besides all of these staff shortage in hospitals is still also a serious
the National Palestinian Onco-heamatology Center at Beit Jala problem.
Government Hospital. The project’s aim was to assist the PNA in The recommendations that we can conclude, depending
carrying out the National Health Plan through the establishment of on the needs assessment that we did, and according to the
the center, aimed at improving the level of advanced medical recommendations that come up through the workshop that was
services in the West Bank and enhancing access to highly organized by Al-Sadeel Society and was attended by key personnel
specialized services in the fields of oncology and hematology. The from the Palestinian MOH who summarized the conclusion, are as
project was completed in 2003. follows:
‘‘Indeed, it’s the only governmental hospital in the district (a) The need for better quality care for the cancer patient.
and people from as far away as Jericho and Ramallah travel to the (b) The need for training of health professionals in palliative care.
Onco-heamatology Center, for services from diagnosis to che- (c) The importance of networking and cooperation between the
motherapy and patient care.’’ Focus-Volume 4-2005 Empowering national NGOs and the MOH.
Women. (d) The need for public awareness regarding the early detection for
Beit Jala Hospital Onco-heamatology Center has 25 beds; a cancer especially breast cancer.
3-room day care unit with 6 beds and 11 armchairs for outpatients; (e) The need for national policy and standards for palliative care
and a specially constructed histopathology laboratory, in which and opioids legislations.
tissue is studied for cancerous cells. (f) The importance of base line data and research.
The project also included a training component, whereby (g) The need for interdisciplinary team work in the issue of cancer.
personnel were trained in Italy, as well as in Beit Jala by visiting (h) To involve palliative care education within the curriculum of
Italian health professionals, including physicians and nurses. The schools of health professions.



Major sources of information malfeasance) are 2 complementary ethical principles that impose
Palestinian Central Bureau of Statistics, 2008 (http://www. affirmative duties to maximize benefits and minimize risks to the
pcbs.gov.ps). patients. The pledge promises to place the welfare and rights of the
Eastern Mediterranean Health Journal, Vol. 14, Special Issue patient above all else (Table 1).
Source: Based on the data from ‘‘2004 Report on the Global
AIDS Epidemic’’ (UNAIDS 2004).
Ministry of Health report, heath status in Palestine 2004.
HRD 2006.
TABLE 1. Patients’ Rights
Palestinians cancer registry. 1. Right for a good quality care
Beit Jala hospital pharmacist. 2. Right for a free choice
Medical union. 3. Right for healthcare decision
4. Right for clear information
5. Right for confidentiality
6. Right for information and health education
7. Right for human dignity
Ethical Issues in End-of-life Care 8. Right for spiritual assistance
Michel Daher, MD. Director Medical Ethics Teaching Program,
University of Balamand, Clinical Professor of Surgery, Saint George
Hospital, UMC, Beirut, Lebanon.
Autonomy is the right of a person to choose and follow his or her
own plan of life and action. In recent decades, the relationship
INTRODUCTION between patients and physicians have been evolving from one
Ethics is a branch of philosophy that examines rights and characterized by paternalism, in which physicians made decisions
wrongs, what should or ought to be done. Clinical ethics refer to for patients according to their professional values, to a more
application of the science and understanding of morality in the field equal relationship of shared decision making, in which physicians
of medicine and health sciences. They are defined as ‘‘the obligations provide information that allows competent adult patients to
of moral nature, which govern the practice of medicine.’’ The goal of make their own choices, referred to as ‘‘informed consent.’’
clinical ethics is to improve the quality of patient care, emphasizing Autonomy is founded in the overall desire of most human beings
the commitment to the well-being of patients.1 to control their own destiny, to have choices in life, and the right of
Owing to technical advances in the care of critical illness, informed and competent adult patients to consent to or refuse
physicians, patients, and families are often confronted with treatment.5 Although the physician has an obligation to respect the
ambiguous circumstances in which medical advances may inad- patient’s wishes, he or she also has a duty to fully inform the
vertently prolong suffering and the dying process rather than bring patient of the probable consequences of those wishes. Justice is
healing and recovery.2 often regarded as being synonymous with fairness; in a general
In this review of the ethical issues confronting physicians sense, people are treated justly when they receive what they deserve
who care for patients with advanced life-limiting illnesses, (Table 2).
philosophical debate continues in the medical community regard-
ing the rightness or wrongness of certain actions (eg, physician-
assisted death, euthanasia) while at the same time there is a strong
desire to find a common ground for moral discourse that could TABLE 2. Ethics and End-of-life Care—Major Principles
guide medical decision making in this difficult period in the lives of
our patients. Nonmaleficence ‘‘first do no harm’’
We will discuss how a good palliative care can be an Beneficence—a duty to do good (not just avoid harm)
alternative to these ethical dilemmas. Autonomy—the recognition of the right of self-determination,
establishing one’s own goals of care
Justice—the equitable distribution of often limited healthcare
resources
ETHICAL PRINCIPLES RELEVANT TO
END-OF-LIFE CARE
The goal of palliative care is to relieve suffering. Suffering
has been defined as ‘‘y the state of severe distress associated with
events that threaten the intactness of the person.’’3 The World ADVANCED DIRECTIVES AND INFORMED
Health Organization has defined palliative care as ‘‘the active total CONSENT
care of patients whose disease is not responsive to curative With progression of an advanced illness there is increasing
treatment. Control of pain, of other symptoms, and of psycholo- debility and loss of independent function that erodes a patient’s
gical, social and spiritual problems, is paramount. The goal of autonomy. This progressive loss of autonomy, in as much as it
palliative care is achievement of the best quality of life for patients further threatens the integrity of the person, adds to the suffering of
and their families y’’4 Healing and alleviation of suffering, the those with advanced illnesses. That is why the practical extension of
classical duties of physicians have been practiced throughout the patient autonomy has been the development and use of advanced
history of the human society development. Different perceptions of directives. Typically, advanced directives can be in the form of a
a patient’s suffering within the medical team (eg, between nurses living will in which treatment preferences usually related to care at
and physicians), between the medical team and family members, or or near the end of life (especially regarding attempts at resuscita-
within families can lead to conflict and are not infrequent reasons tion) are documented, or a durable power of attorney for
for ethics consultations in patients with advanced life-threatening healthcare in which a surrogate decision maker is identified (often
illnesses. This will provide the context for the application of the one’s spouse or other close relative).6 In actual practice, it is almost
Hippocratic oath that embraced the classical principles of medical impossible to anticipate every possible situation that might arise,
ethics of beneficence, non-malfeasance, confidentiality, autonomy, especially during intensive care of a critically ill individual, in which
and justice. Beneficence is the obligation of healthcare providers to specific decisions can be made in advance. Thus, the principle of
help people in need (relieve their suffering). Non-malfeasance is the autonomy as applied to medical decision making in the context of
duty of healthcare providers to not harm their patients (exacerbate patient incapacitation is in a process of evolution depending on the
their suffering). Doing good (beneficence) and doing no harm (non- country and culture (Table 3).



physician-assisted death) will mount. Physician-assisted death is
TABLE 3. Control of Pain and Other Symptoms in direct conflict with the Hippocratic oath and tradition.
No patient should die in pain or with other treatable symptoms 6. Although physicians may be able to address the physical distress
of the dying, they may not have the skills or resources to address
Social, psychosocial, and spiritual problems must be properly
deeper, existential issues troubling their patients. This lack of
addressed
The undertreatment of pain and other symptoms is well knowledge does not justify taking a patient’s life when others
documented, the causes are complicated and not well understood who may have the skills and patience are available to help.
Guidelines have been developed to assist physicians in controlling Palliative care team has here its primary role and place.
other symptoms, such as nausea, fatigue, and breathlessness
CONCLUSIONS
Patients and their physicians together face a number of
challenging ethical issues at the end of life (Table 4). Although
WITHHOLDING/WITHDRAWING LIFE-SUSTAINING some issues (eg, the role of physician-assisted death in addressing
THERAPIES VS. PHYSICIAN-ASSISTED DEATH suffering) remain very controversial, there is much common ground
There is no fundamental difference ethically between with- based on the application of the 4 major principles of medical ethics,
drawing or stopping a treatment that is no longer beneficial and not nonmaleficence, beneficence, autonomy, and justice. Thus, the
starting or withholding such a treatment.7 physician’s primary commitment must always be to the patient’s
Once a decision is made to withhold a ‘‘life-sustaining’’ welfare and best interests, whether the physician is treating illness
treatment, other ongoing treatment should be reviewed as to the or helping patients to cope with illness, disability, and death.
appropriateness of its continuation, as well. The decision to withdraw The physician must support the dignity of all persons and
life-sustaining therapy is rarely an emergency. It is essential to take all respect their uniqueness.
the time necessary to resolve any conflicts that may exist between
the medical staff and family members or that may exist within the
medical team.8 Clinicians should be aware that personal biases and TABLE 4. How Should I Approach End-of-life Care in
values often play a dominant role in their clinical decisions Practice?
(as opposed to objective data). All team members (attending
physician, residents, nurses, social workers, etc.) who have a direct The patient and his or her family should be able to discuss in
role in the patient’s care should have input in the process.9 advance their desires regarding life-sustaining treatments and
The rule or doctrine of ‘‘double effect’’ is important to personal care. Physicians should facilitate this advance care
consider in any discussion of the role of palliative care in relieving planning
the suffering of patients with advanced illnesses whether or not A key skill here is the communication of bad news
withdrawal of life-sustaining therapy is also under consideration. A key skill here is the ability to negotiate a treatment plan that is
A treatment (eg, opioid administration in the terminally ill) that acceptable to the patient, the family, and the healthcare team
is intended to do good and not harm the patient (ie, relieve pain) Attention to psychosocial issues demands involvement of the
is ethically acceptable even if a potential consequence (side effect) patients and their families as partners
of its administration is to shorten the life of the patient (eg, by Physicians should be sensitive to the range of psychosocial distress
respiratory depression).10,11 and social disruption common to dying patients and their
Thus, withholding or withdrawing treatments that are no families
longer beneficial or administering opioids for pain relief that may An interdisciplinary healthcare team can help in these areas
indirectly hasten death are not euthanasia. Spiritual issues often come to the fore
In the ongoing debate regarding physician-assisted death
(physician-assisted suicide or euthanasia), the most compelling
argument in favor of the practice relates to suffering. If suffering is References:
the greatest evil (which many advocates of physician-assisted death 1. Randall F, Downie RS. Palliative Care Ethics: a Companion for all
would endorse), then all means should be available to address it, Specialties. 2nd ed. Oxford, UK: Oxford University Press; 1999.
including intentionally causing the premature death of one’s 2. Curtis JR, Rubenfeld GD, eds. Managing Death in the Intensive
patients.12 Care Unit. New York, NY: Oxford University Press; 2001.
There are a number of reasons to resist embracing such a 3. Cassel EJ. The nature of suffering and the goals of medicine.
‘‘solution’’ to the suffering of our patients.13 NEJM. 1982;306:639–645.
1. Requests for physician-assisted death are often a sign of 4. World Health Organization. Cancer Pain Relief and Palliative
unaddressed issues including inadequately treated physical Care: Report of a WHO Expert Committee. Geneva, Switzer-
symptoms (eg, pain), untreated clinical depression, fear of a land: World Health Organization; 1990:11.
loss of control (autonomy), fear of being a burden, and potential 5. Danis M, Mutran E, Garrett JM, et al. A prospective study of
existential or spiritual distress. the impact of patients preferences on life-sustaining treatment
2. Physical suffering can be relieved without writing a lethal and hospital cost. Crit Care Med. 1996;24:1811–1817.
prescription. Distressing symptoms can be controlled in more 6. George H. Gallup International Institute, Spiritual Beliefs and
than 95% of cases with medications and supportive care. the Dying Process. A Report of a National Survey Conducted
Terminal or palliative sedation can be used to control very for the Nathan Cummings Foundation and Fetzer Institute,
difficult symptoms without taking a life. October 1997:47.
3. The end of life is a critical time for personal growth. During the 7. Mularski RA, Osborne ML. The Changing Ethics of Death in
last days and weeks of life a number of very important activities the ICU, Chapter 2 in Managing Death in the Intensive Care
can occur including reconciliation and healing of relationships, Unit. In: Curtis JR, Rubenfeld GD, eds. New York, NY:
life review, and spiritual growth as one searches for meaning in Oxford University Press; 2001:7–17.
one’s suffering. 8. Pawlik TM, Curley SA. Ethical issues in surgical palliative
4. Legalization of physician-assisted death would be inherently care: am I killing the patient by ‘‘Letting Him Go’’? Surg Clin
unsafe. Patients with limited or unequal access to healthcare (eg, N Am. 2005;85:273–286.
the poor) would be particularly vulnerable, as physician-assisted 9. Hinshaw DB, Pawlik T, Mosenthal AC, et al. When do we
death would inherently be quite ‘‘cost effective.’’14 stop, and how do we do it? Medical futility and withdrawal of
5. Physician-assisted death poses an inherent conflict of interest for care. J Am Coll Surg. 2003;196:621–651.
physicians. With rising healthcare costs (particularly at the end 10. Sykes N, Thorns A. The use of opioids and sedatives at the end
of life), the pressure for more ‘‘cost effective’’ solutions (eg, of life. Lancet Oncol. 2003;4:312–318.



11. Quill TE, Dresser R, Brock DW. The rule of double effect: a The time will come for Lebanon to form the National Council for
critique of its role in end-of-life decision making. N Engl Pain Relief and Palliative Care as an advocacy and coordination
J Med. 1997;337:1768–1771. body for pain relief and palliative care in the near future. To that
12. Sulmasy DP, Pellegrino ED. The rule of double effect: clearing effect, we believe the future is near.
up the double talk. Arch Intern Med. 1999;159:545–550.
13. Kollef MH. Outcome Prediction in the ICU, Chapter 5 in
Managing Death in the Intensive Care Unit. In: Curtis JR,
Rubenfeld GD, eds. New York, NY: Oxford University Press; The Development of Pediatric Palliative Care in Jordan
2001:39–57. Maha Arnaout, MD. Pediatric Hematology and Oncology, Pedia-
14. Groenewoud JH, et al. Clinical problems with the performance tric Pain Management Program and Palliative Care Service, King
of euthanasia and physician-assisted suicide in the Nether- Hussein Cancer Center, Amman, The Hashemite Kingdom of Jordan.
lands. N Engl J Med. 2000;342:551–563. Jordan is a small country in the Middle East and has limited
resources. The Population of Jordan as estimated in July 2008 is
6,198,677 (CIA fact book). Of those 1,993,517 (32.2%) are between
Implementation of Palliative Care in Lebanon 0 and 14 years whereas 14 years is the official cutoff age between
Michel Daher, MD. Lebanese Cancer Society, Achrafieh, Beirut, adults and pediatrics as defined by the Jordanian Ministry of
Lebanon. Health. In 2005, according to the Jordanian Cancer Registry, about
In the past few decades, palliative care has witnessed an explosion 200 new cases of pediatric cancer patients were diagnosed.
in knowledge and in the provision of services in many countries. An Considering that 51.8% (WHO) are diagnosed at an advanced
overwhelming number of models and care services have been stage, approximately 100 children with cancer will need palliative
developed and introduced into practice with the aim of improving care.
how the needs of terminally ill patients and their families are met. King Hussein Cancer Center (KHCC) as a comprehensive cancer
Palliative care is a fairly new development in Lebanon. In 1995, the center which treats most of children with cancer and has the biggest
need for pain relief and palliative care was identified as a priority, pediatric oncology department in Jordan, is at a position to initiate
and affordable solutions were recommended and submitted to the a pediatric palliative care program (PPCP).
Ministry of Health and the WHO. The KHCC adult team was established in 2004. The PPCP was
A Pain Relief and Palliative Care Group was created in 1998 under established in August 2005. This program provides care to children
the auspices of the Lebanese Cancer Society to promote Palliative and young adults up to 18 years (but we continue to follow up all of
Care in Lebanon and to act as a focus for all those who work, or our pediatric patients until death regardless of age). The pediatric
have an interest, in the field of pain and palliative care. Aims and program was initially integrated with the adult Palliative Care
objectives are as follows: Program. In 2007, PPCP was separated from the adult’s and
became a program of the Department of Pediatrics. A PPCP is
1. Increase the awareness and promote the development and
dissemination of palliative care at scientific, clinical, and social necessary in a comprehensive cancer centers and should aim to
levels. meet social, cultural, spiritual, physical, and emotional needs of
2. Train those who at any level are involved with the care of child and family. The goals of PPCP at KHCC are:
patients with incurable and advanced disease and promote study To promote comfort and enhance quality of life through
and research. adequate symptom control and pain management.
3. Bring together those who study and practice the disciplines To provide care within a children’s hospice setting or through
involved in the care of patients with advanced disease (doctors, home care.
nurses, social workers, psychologists, volunteers, and others). To create a homely and welcoming environment in which
4. Address the ethical problems associated with the care of children and young people with cancer and their families, feel
terminally ill patients. supported and rested.
Several workshops and symposia were organized under the To provide physical, emotional, and social care to the child and
auspices of the Lebanese Cancer Society, and several recommenda- his/her family.
tions were published to meet these objectives: To work flexibly alongside family members, supporting them in
the manner that they choose.
(a) Policy: Freedom from cancer pain should be a human rights.
(b) Drug availability: an essential drug list, not only for chemo- To provide evidence-based care using a multi-skilled team that
therapy, but also for pain relief and palliative care should be has access to training and development opportunities.
established. Bereavement support is an integral part.
(c) Education and training in palliative care: undergraduate Adequate support should be available to the healthcare team.
training of nurses and physicians on pain relief and palliative Research.
care should be emphasized. A multidisciplinary team provides care 24 hours per day. The full
(d) Reimbursement of doctors for palliative care services would time team is composed of
lead to better compliance and improve pain relief and palliative
A full time pediatric oncologist.
care.
(e) Multidisciplinary clinic. A full time general pediatrician (in training).
(f) Home care respects the patient’s wishes in most societies and Two full time clinical nurse specialists.
saves on expensive hospital beds. The parents who play a major role in care planning.
Palliative care in Lebanon has made some important strides in the Part time members include
last decade but it is still in its infancy. More attention needs to be
One psychologist.
given in the near future to the actual implementation of the
objectives listed above. One social worker.
Education and training of health professionals in palliative care Physiotherapist and other medical or allied services, such as
should be provided by medical and nursing schools throughout the pharmacy.
country. Postgraduate education in medicine and nursing and Anesthesia, dentist, etc.
ensuing certification should be made available. A close collabora- Note: The psychologist and social worker serve both the general
tion between medical and nursing associations to achieve this end oncology ward as well as palliative care.
will be needed and is highly recommended. It is as important and At the beginning, our focus was in developing a hospital or
essential to involve policy makers in the development of pain relief hospice-based service, but because of the limitations in providing
and palliative care services and clinics that meet the needs of the services, the focus is now shifting to home care. We have noticed
population in Lebanon. that most parents prefer to have their child to be cared for at home.



Currently, children are admitted to the general pediatric oncology FUTURE PLANS
ward and to the adult hospice if beds are available. Developing a home care service

Our patients are usually admitted for symptom management and
stabilization, discharge planning, and terminal care. A hospice assigned for children, and respite care
For outpatient care, we hold 3 clinics a week for regular follow-up, A comprehensive full time multidisciplinary team
symptom management, and psychologic support. We also see our Education and awareness about palliative care for both the
patients in the emergency room as needed during working hours healthcare providers
and seen by the pediatric fellows after hours. The palliative care Education and awareness about palliative care for the public
team is consulted on every case coming after hours. A support system for staff
As for home care, a pediatric team is not available and home care
cannot be provided. A separate budget for pediatric palliative care.
However, adult nurses cover this service, but they are uncomfor-
table taking care of children and difficulty in follow-up (family
refuses home back for social reasons, live outside area of coverage). CONCLUSIONS
Currently, the pediatric team offers home care by telephone. The PPCP is feasible and necessary for comprehensive care of
PPCP nurse specialist calls the family daily for follow-up. Parents children with cancer. A multi-skilled team is needed. Access to
can call the nurse coordinator any time. training and development opportunities is important. Empowering
The major barriers we are currently facing from the medical staff families (and patients) in decision making establishes a meaningful
include: trusting relationship. For effective services, the program needs
Delayed referral strong support.
Physician denial
Physician and nurse attitudes and understanding of palliative
care
Palliative care seen as a less prestigious discipline.
Uncomfortable caring for a terminal patient Telling the Truth: is it That Difficult? A Case Study
Difficulty in discussing change of goals of treatment and referral Nesreen Al Alfi, RN, MSN. Training and Development Center, King
to palliative care. Hussein Cancer Center Amman, The Hashemite Kingdom of Jordan.
Need for further education and training. My case is my father, whose diagnosis was fatty liver I(NASH). To
Small number of professionals entering the field. someone like me who works in health care, the prognosis was plain
clear to me right from the start. Nevertheless, I did not want to be
Lack of palliative care in other major hospitals.
the bearer of bad news to my family, ignoring their query looks of
Barriers from the family include: the meaning of such diagnosis, I decided to wait for the consultant
Feeling of alienation and isolation explanation for the condition. It got my attention the way that the
Feeling neglected by primary team MD kept focusing on providing solutions for the acute condition of
Family’s unrealistic expectations the ascites, edema, and jaundice, since these problems seemed to be
the most disturbing events to my family, nothing was mentioned
Social situation regarding the recurrence of these symptoms, or if they were going
Level of education to be worsening with time, and the availability of curative
Child neglect treatments. As long as the symptoms were reversing, my family
Low public awareness was always feeling optimistic and positive that the crisis will resolve
with each reassurance that they receive from the physician. As the
Families refuse admission to hospice
symptoms were recurring more frequently, and my father looking
Place of death more acutely ill, questions regarding curative intent measures were
Isolated raised, to my surprise the physician focused his energy on
Unfriendly, combined with patients explaining the possibility of managing the distresses resulted from
Environmental barriers include: the disease in a hospital setting instead of home! Eventually I found
myself providing answers instead. This situation made me
No pediatric hospice, if children are admitted to hospice they are
admitted next to a dying adult. elaborate more on who should have done this task first place?
And how should such news be disclosed to my family? And finally,
Unfriendly hospice environment for children and family.
how much truth is in incorporated in the answers that are provided
Shortage of beds. instead of the gray-shaded answers? For the first time, I am in the
Barriers from the palliative care team include: on the other side of the conversation, the perspective of the patient
The team is not well supported leading to staff burnout and his family, and not the perspective of the healthcare provider.
Lack of awareness of medical professional and the public Breaking bad news has always been one of the most difficult tasks
that physicians have to do, especially if it involved prognostic
Education and training in palliative care news.1 Many have tried to developed certain techniques and
Absence of palliative care modules/placements in medical checklist to facilitate the task depending on different resources.
curriculum Nevertheless, it is still a process that needs preparation and
Patients are demanding, need extra care and time consuming considerations for so different factors such as the patient, family,
Limited resources. expectations, desire to know, religious, and cultural norms.2
Highlighting how critical this step can be for both physician and
the patients,3 introducing a preparatory course in which commu-
nication skills course can be introduced to ease the step for the
ACHIEVEMENTS TO DATE healthcare providers; as it helps them to detect distresses level as
Between August 2005 until December 2007, we took care of they talk to their patients, and subsequently increase the level of
222 patients. Between 2007 and 2008, 145 patients were followed satisfaction of the patients and their families.4
up, of those 76 patients died: 12 (15.7%) patients died at home, 31 But even with preparation, it is still perplexing; it involves many
(40.7%) patients in hospice, 27 (35.5%) patients in hospital, and 6 emotional aspects, and a conflict between satisfying the desire to
patients had unknown location of death (these numbers are know by the patient, and the needs of his/her family to realize
calculated according to the total number of patients from January expected events and outcome.5 All of this, entirely taking place
1, 2007 to December 31, 2008). without deleting hopes from their mental background.2



In conclusion, disclosing bad news that involves prognostic news is THE RATIONALE FOR PALLIATIVE
a critical step in the patient-physician relationship; doing so in a PSYCHOTHERAPY
professional honest manner, but yet balancing the needs of
information of the patient and his/her family with consideration Not many healthcare providers are aware of the fact that
to their rights, emotional feelings, and desires regarding end-of-life symptoms of psychologic distress and existential concerns are
apparently more prevalent than other physical symptoms, includ-
care. All of which requires an understanding of the patients.
ing pain.3 Nevertheless, so far, most of the attention and resources
Having training preparations for physicians, that allow them to
detect different verbal and nonverbal gestures from the patients, have been referred to physical supportive care, whereas the
can assist them in considering their emotional status without psychologic aspects have been considered as marginal.
denying them their rights to know the truth. Also having clear People suffering from advanced illness tend to present many
pathways that can give them guidance through communication can psychologic reactions to their situation, either emotionally, cogni-
facilitate such a step. Some institution found that having a ready- tively, spiritually, or behaviorally. For instance, due to both
physical and emotional reasons, patients suffering from advanced
listed questions for the patients and their families can have a
positive impact on the effectiveness of the conversation regarding illness tend to withdraw into themselves and decrease interaction
the prognostic news, and thus leading to increase satisfaction with their surroundings.4 This behavior of apparent disengagement
and awareness level for the patients; as they sometimes due to the leads to a progressive mutual reaction from the surrounding, which
effect of the diagnosis itself cannot assemble their thoughts or also decreases communication with the patient. Another issue to be
questions, or simply cannot comprehend answers provided to them.6 pointed out, that along with the physical deterioration—especially
toward the end of life—the emphasis on instrumental—sometimes
All of the above-mentioned elements can be incorporated in one
intensive care becomes greater, sometimes on the account of
comprehensive guideline that will reduce stress associated with
disclosing difficult news, and will increase satisfaction level for emotional care. As an outcome, the patient feels more and more
patients, even if depression and anxiety are inevitable as part of the insulated and lonely. Another cause for an increasing lack of
whole process. communication between patient and surroundings is the frequent
gap that exists between the patients’ inner comprehension of his
References: time running out, to the optimistic transmissions others keep
1. The A-M, Hak T, Koeter G, et al. Collusion in doctor-patient sending him. As a consequence of their attempts to ‘‘keep his spirit
communication about imminent death; an ethnographic study. up,’’ maintain moral and protect him from what is clearly known,
BMJ. 2000;321:1376–1381. the patient feels either deceived or in the need of protecting them in
2. Clayton J, Hancock K, Butow P, et al. Clinical Practice turn, and so forth, withdraws inside even more.5
Guidelines for Communicating Prognosis and end-of-life issues In these cases, a mindful, professional sympathetic identity
with adults in the advanced stages of a life-limiting illness, and is required, both for the sake of helping patients to cope with their
their caregivers. Med J Austr. 2007;186:77–108. loneliness and to be given the opportunity to share the load of his
3. Miyata H, Hisateru Tachimori H, Takahashi M, et al. last journey, which in some cases is just unbearable for the
Disclosure of cancer diagnosis and prognosis: a survey of the surroundings to contain. Hence, working with patients suffering
general public’s attitudes toward doctors and family holding from advanced illness resembles fine art; being complicated,
discretionary powers. BMC Med Ethics. 2004;5:7. delicate, and requiring extreme sensitivity and alertness. Psycho-
4. Isabelle Merckaert I, Libert Y, Delvaux N, et al. Factors that social intervention in such cases may be also significant, by
influence physicians’ detection of distress in patients with encouraging and assisting interpersonal processes of discourse
cancer. Can a communication skills training program improve between the patient and his relatives. Meaningful open commu-
physicians’ detection? Cancer. 2005;104:411–421. nication may alleviate distress in both sides and improve separation
5. Clayton JM, Butow PN, Tattersall M. The needs of terminally process, which sums up as an adaptive grieving process among
ill cancer patients versus those of caregivers for information relatives.6
regarding prognosis and end-of-life issues. Cancer. 2005;103:
1957–1964.
6. Clayton, et al. Randomized controlled trial of a prompt list to
help advanced cancer patients and their caregivers to ask QUALITIES OF PALLIATIVE PSYCHOTHERAPY
questions about prognosis and end-of-life care. J Clin Oncol. Although, in general, conventional psychotherapy aims to
2007;25:715–723. treat and improve psychologic problems or disorders, the goal of
palliative psychotherapy is caring, by alleviation of suffering, rather
than curing the patient.
Trying to define palliative psychotherapeutic care, Kreitler7
Principles of Psychotherapy in Palliative Care noted the following principles: (1) comprehensive (holistic)
Shirly Alon, MA. Oncologic Institute, ‘‘Sapir’’ Medical Center, approach, referring to the entire spectrum of patients’ life; (2)
Kfar-Saba, Israel. focus on immediate needs—here and now; and (3) focus on
Palliative care is no longer considered the treatment of choice just maintenance or improvement of patients’ quality of life, no matter
for those who have no more hope to be cured. It is defined as the of prognosis or life expectancy.
physical, psychologic, social, and spiritual care, provided to Psychotherapy in palliative care is intended to assist patients
patients along the different stages of a life-threatening illness, from to better cope with their prognosis, adjust to life with their life-
diagnosis to death or resolution. Palliative care emphasizes threatening illness (sometimes followed by constant losses and
alleviation of symptoms and maintenance of quality of life, in all deteriorations) and live more fully in the time left.8 In fact, one of
aspects, and from here, advisable to integrate even in the course of the greatest challenges of palliative psychotherapy lies in assisting
curative treatment, when quality of life is damaged throughout the patient to adjust to the losses and deteriorations and accepting
illness and treatments.1 them, sometimes even as unavoidable. In other words, palliative
Psychosocial aspects, accordingly, are not exceptional: psychother- psychotherapy deals more with emotional-focused coping rather
apeutic interventions in palliative orientation can be given at all than problem-focused coping.9
stages of coping with illnesses, and therefore, it is not a matter of The exclusiveness of the palliative psychotherapeutic ap-
timing, but a matter of purpose. In palliative psychotherapy, the proach is concealed in its tenderness and the absence of presumptions
purpose lies in supplying support, relief and prevention of toward change in patient’s life, personality or behavior. The patient
aggravation, rather than curing mental states. Some of its fields does not need any active investment of psychologic resources, and his
of interest include assessing and communicating of prognosis, pain defense mechanisms are being respected. These elements are quite
management and relief of distressing symptoms, understanding important, especially for patients at terminal stages, who cannot
ethical and legal requirements, and ensuring the provision of afford themselves the energy psychotherapeutic interventions focused
culturally appropriate spiritual care during the final stage.2 on change or active coping require.



To achieve outmost tuning, the therapist must be alert to the Immediate Intervention Provided
patients’ coping mechanisms and emotional reactions, and respond For the sake of allowing patient immediate quick relief of
respectively. Using communicative tools, such as empathic listening, distress, it is important for the therapist to be accessible and
unconditioned acceptance and legitimizing individual expression available for patients’ needs whenever he requires or requests
styles, the therapist may create intimate atmosphere of partnership assistance. This principle is also well implemented in general
and joining. Although directive approaches, psychoeducation or palliative care, which emphasizes the focus of work on the ‘‘here
problem-solving techniques were relevant in previous phases of coping and now.’’
with illness, now these are replaced by supportive and accompanying
approaches. Some of them will be discussed later on.
Flexible Setting
In psychotherapeutic sessions, it is customary to maintain
THE FOLLOWING FEATURES CHARACTERIZE THE routine and constant settings, such as fixed time, place, and
boundaries between therapist and patient. In palliative psychother-
MAIN QUALITIES OF PALLIATIVE PSYCHOTHERAPY apy, however, these rigid rules are more likely to oppress than to
assist. Therefore, it is quite common to let those rules looser by
Patient-oriented Psychotherapy allowing a more flexible format of work, according to patients’
The palliative psychotherapeutic intervention is tuned and abilities and needs. A therapeutic session, for instance, may last only a
focused on the patient and his own needs. As opposed to few minutes (in case of a frail or hospitalized patient), or In contrast,
interventions in earlier stages of illness, which tend to be directive more than an hour. Duration of meetings may be as required—from
and psychoeducational, in palliative setting the themes of work are ad hoc to a daily basis. Location of sessions can also change
brought up from the patient himself, whereas the therapist according to circumstances—from the traditional clinic, to the
cooperates obediently. The initiation of themes by the therapist patients’ deathbed, either at the hospital, hospice, or patient’s home.
are not applicable here, instead, he fulfills a rather reactive role. Another example for the importance of loosened boundaries
This relates not only for topics of conversation, but also to their is the use of physical touch as a mean of communication with the
depth and rhythm. For example, the therapist will lead the patient patient; physical gestures, such as holding patient’s hand, hugging
toward forgiveness or life cycle closure work only if the patient or assisting patient to change postures are likely to obtain a sense
himself expresses a wish to do so. of intimacy, partnership, and acceptance.

Focus on Symptoms Management Additional Participants in the Therapeutic Alliance
Even when the initial contact is established on patient-
Just as palliative care, palliative psychotherapy espouses
therapist dyad, it is quite often to notice, in the course of time, a
in treating symptoms, rather than their origin. As the sense of
gradual joining of other members. The attaches may be spouses,
equilibrium (both physical and emotional) is so essential to the frail
other family members or professional staff members. This new
patient, then there is no point or need to cause any distractions or
alliance is a phenomenon termed as ‘‘change in the identified
undermining, as long as there are not any disturbing symptoms.
patient,’’ which is common while working with terminally ill people.
An example to clarify the subject can be given in the case of bad
Along the deterioration and sinking of patient, he gradually decreases
marital relationships, usually existing long before the illness.
communication with the surroundings (including therapist), whereas
Sometimes, these sediments cause the patients (or spouse) distress
his beloved seem to seek more and more for psychologic assistance.
due to current conflicts, but in other times, the long ago detrimental
This increased need of family members could be a result of increased
relationship are of routine and the patient does not find any point
distress, anticipatory grief, burnout symptoms or other related needs.
or interest in revealing the grievance or conflicts. In other cases, the
Although in conventional psychotherapy this form of shift in the
dramatic change in the balance of power within the couple makes
identified patient seems awkward, in palliative setting it is considered
confrontation uncomfortable, if not impossible. Therefore, it is not
not only legitimate, but also natural.
uncommon for patients (and/or families) to claim irrelevance in
opening up Pandora’s Box in such a fragile period. In this specific
case, the marital problems reflect a general problem in the patient’s Patient-Therapist Communication
life, which might be worsened alongside the illness, but it does not Like in each psychotherapeutic alliance, the sense of open
stem from it. When the difficulties in relationship cause distress, it is communication, or ‘‘chemistry’’ is uppermost. In palliative psy-
recommended to intervene, with the intention of being as specific chotherapy, the developing rapport has an enormous importance,
and illness-related as possible. Again, it is appropriate to remind, folding up careful intimacy, trust, sense of partnership, uncondi-
that the patient and family do not always have the psychologic tioned acceptance, empathy, and infinite containing. Sometimes, the
energies, resources or time to deal with profound interventions. As therapist finds himself taking part as a mediator or even as a
it is usually not the right time or place for deep psychotherapy, the spokesman of the patient, facing the medical staff or other family
orientation of intervention would be symptom management, to members. Serving this role actually reflects the expected capability of
ease on distress from both sides. Of course, there are other the therapist, to understand and analyze the patients’ behavior,
examples for patients who do wish to improve problematic aspects emotions and needs, in a way that no others around him can.
in their lives and actually find the time right for intensive, deep
psychotherapy. In these cases, it is certainly recommended to
response to those wishes, yet following patients’ pace and METHODS AND APPROACHES USED IN
expectations. Nevertheless, we must keep in mind that, such work PALLIATIVE PSYCHOTHERAPY
for patients suffering from advanced illness conveys many According to the holistic apprehension, in addition to any
obstacles. A major one is that the time left and the mental or psychotherapeutic intervention, therapist must pay attention to
physical resources might not be sufficient for fulfilling the patient’s patients’ physical symptoms, as only under conditions of physical
expectations. For that reason, it is highly recommended, not only comfort will the patient have the benefit of psychologic availability
to define a main goal for work with the patient, but also some needed to deal with intrapsychic and interpersonal processes, such as
intermediate goals, that could be achieved in shorter periods and separation, closures, and summation of life. Of course, other
with not as much need for change or active effort from patient’s emotional reactions to life coming to their end could also appear;
side. That is due to the unfortunate but significant possibilities of on the positive side of the spectrum, patients can demonstrate
deterioration or incapability, which might interrupt the therapeutic tremendous attempts to hang onto every possible spark of hope, such
sequence. Achieving those subgoals may provide the patient a as new or experimental promising treatments, getting closer to
satisfying sense of success and fulfillment, even if the major goal religion, faith and so on, whereas in contrast, they can experience
would not be eventually addressed. anger, bitterness, depression, or despair. However, despite having



supposedly contradictory emotions, it is not unusual for the patient symptom prevalence, characteristics and distress. Eur J Cancer.
to experience both aspects—either simultaneously or in fluctuations. 1994;30A:1326–1336.
To assist in better coping with emotional and existential 4. Pessin H, Rosenfeld B, Breitbart W. Assessing psychological
suffering as one nears death, therapists may use resources such as distress near the end of life. Am Behav Sci. 2002;46:357–372.
spirituality and meaning.10 These themes are the hardcore of 5. Byock IR. The nature of suffering and the nature of
existential or narrative orientations and hence, they are not only opportunity at end of life. Clin Geriatric Med. 1996;12:2–10.
popular, but also proven to be effective in alleviating symptoms 6. Peleg G. Journey between life, death and life [article in
and improving patients’ well-being toward the end of life. Hebrew]. BAMA J Israeli Cancer Assoc. 2006;16:40–44.
Narrative approaches, such as life review, personal doc- 7. Kreitler S. Principles of psychosocial aid at the end of life
umentation, or storytelling, succeed in integrating both sides of [article in Hebrew]. BAMA J Israeli Cancer Assoc. 2006;16:
those extreme emotions and conceptions, such as hope versus 38–39.
despair, achievements versus failures, and the psychodevelopmen- 8. Spira JL. Existential psychotherapy in palliative care. In:
tal need of closures versus the will to live longer. Professional Chochinov HM, Breitbart W, eds. Handbook of Psychiatry in
interventions using methodical narrative approaches may assist in Palliative Medicine. New York: Oxford University Press; 2000:
accepting ones life cycle as a whole and thereby achieving ego 197–214.
integrity and sense of meaning in life.11 Another value of narrative 9. Lazarus RS, Folkman S. Stress, Appraisal and Coping. NY:
therapy lies in its ability to preserve instrumental self esteem and Springer Publishing; 1984.
image, despite the loss of functions and abilities. Referring to past 10. Breitbart W, Gibson C, Poppito SR, et al. Psychotherapeutic
achievements and reflecting their inherent and eternal part of Interventions at the End of Life: a focus on meaning and
identity may lead to positive outcomes, such as sense of satisfaction spirituality. Can J Psychiatr. 2004;49:366–372.
in life, preserved self esteem, and sense of coherence.12 11. Garland J. What splendour, it all coheres: life review therapy
Existential approaches also strive for enhancing meaning, with older people. In: Bornat J, ed. Reminiscence Reviewed:
purpose, and value in patients’ life, which are prominent challenges Perspectives, Evaluations, Achievements. Taylor Francis Pub;
that people at the end of their life tend to face.8 Being confronted with 1994.
conditions affecting their quality of life, patients seem to sense fatal 12. Vaughan SM, Kinnier RT. Psychological effects of a life review
diminishing of their freedom of choice. Existentially orientated intervention for persons with HIV disease. J Couns Dev.
therapy allocates comprehension on ways to reobtain possible control 1996;75:115–123.
and freedom of choice (or at lease, a part of it), while shifting patients’ 13. Chochinov HM, Breitbart W, eds. Handbook of Psychiatry in
feelings of dependence or burden toward the search for meaning. Palliative Medicine. New York: Oxford University Press; 2000.
In the last 2 decades, a consistent growing of literature and 14. Breitbart W, Heller KS. Reframing Hope: meaning-centered care
research is developing on psychotherapeutic interventions for for patients near the end of life. J Palliat Med. 2002;6:979–988.
palliative care patients. Models of intervention, such as the 15. Cherny NI, Catane R. Attitudes of medical oncologists toward
‘‘Dignity-conserving Intervention’’13 or ‘‘Meaning-centered Psy- palliative care for patients with advanced and incurable cancer:
chotherapy’’14 are only an example of such, which show the report on a survey by the European Society of Medical
growing awareness and need to relate to the emotional world of the Oncology Taskforce on Palliative and Supportive Care.
severely ill patient, even when there is only a short time left. Cancer. 2003;98:2502–2510.
SUMMARY
To conclude, just as a successful physical symptom manage-
ment is important for patients’ well-being and quality of life, so are Patients Between Dryness and Dampness: Guided Imagery
emotional-mental aspects. Therefore, emotional symptom manage- Metaphors in the Treatment of Patients With Postradiation
ment should be assimilated in every model of palliative or supportive Xerostomia
care, without any need for literal request from the patient.15 Since Eran Ben-Arye, MD*w, Elad Schiff, MDzy, Shai Pasternak, MDJ,
after all, it is well known that the progression of illness is being Moti Levy, MDJ, and Ofra Halperin, RN, PhDz#. *Integrative
followed by emotional distress.4 The majority of that distress, Oncology Program, The Oncology Service, Lin Medical Center,
however, is not commonly reported by patients and not always Clalit Health Services, Haifa and Western Galilee District; w The
receives profound intervention. Sometimes maltreatment is due to the Complementary and Traditional Medicine Unit, Department of
conception that distress toward the end of life is obvious and Family Medicine, The Bruce Rappaport Faculty of Medicine, The
unavoidable, sometimes because it is considered (according to the Technion, Israel Institute of Technology; zNursing School beside
surrounding, caregivers or medical staff) as normal adjustment or Bnai-Zion Hospital; zDepartment of Internal Medicine, Bnai-Zion
grief reaction and in other times because of the feeling that there is not Hospital, Haifa; yThe Department of Complementary/Integrative
much to be done about it. Even so, it is certainly important to offer Medicine, Law and Ethics, The International Center for Health, Law
emotional comfort and support through palliative psychotherapy. and Ethics, Haifa University; JClalit Complementary Medicine,
Yet, there are some patients, who do not express any desire Clalit Health Services; and #The Nursing Department, Max Stern
for psychotherapeutic intervention, but rather wish to be left alone. Academic College of Emek Yizrael, Israel.
Perhaps this behavior can be explained as a coping style using Background: The sensation of dry mouth, xerostomia, after
disengagement from one’s life and circle of interest and therefore radiation to the head and neck region, is debilitating and
should be respected and accepted. However, the same withdrawal challenging to palliate. In a recent pilot study, hypnosis was
behavior can also be a result of severe depression. Therefore, it is reported to benefit patients experiencing moderate-to-severe
indeed important, that psychotherapeutic palliation should be postradiation xerostomia.
accessible and offered to all patients, at least on a screening and
evaluation basis. However, the intervention itself should be tailored Objectives and Methods: We aimed to develop a cross-cultural-
to the patients’ own terms, pace and need. based guided imagery tool tailored according to patients’ images
and metaphors, enriched with perspectives of 3 traditional/CAM
References: Please provide full form of ‘CAM’.system modalities. The study
1. World Health Organization (WHO). Definition of palliative was designed in 2 stages: a qualitative study of 3 patients who had
care. Retrieved from the World Wide Web: http://www. participated in a previous quantitative pilot study, and a
who.int/cancer/palliative/en, 2002. brainstorming process involving medical practitioners specializing
2. Quest TE, Marco CA, Derse AR. Hospice and palliative medicine: in traditional Chinese medicine (TCM), traditional ayurvedic
new subspecialty, new opportunities. Ann Emerg Med. 2009 [Epub medicine, and anthroposophic medicine.
ahead of print]. Retrived from www.pubmed.com
3. Portenoy RK, Thaler HT, Kornblith AB, et al. The memorial Results: In the first stage of the qualitative process, several themes
symptom assessment scale: an instrument for the evaluation of pertaining to illness-associated symptoms and hypnotherapy



emerged. These included illness-associated and therapy-associated also encouraged to speak freely and openly about their experiences in
difficulties; ceremonies/practices associated with illness and treat- the pilot study. The meeting, which was recorded, lasted for two and
ment; images evoked by hypnotherapy, and psychospiritual dimen- half hours. The transcript was used to identify keywords and themes
sions triggered by xerostomia and hypnosis. In the second step of articulated by the group participants.
brainstorming, the authors summarized TCM, traditional ayurvedic
medicine, and anthroposophic medicine perspectives of post-radia-
tion xerostomia. From these perspectives, the authors crystallized Brainstorm Process
three core archetypal images and metaphors arising from them: Four medical practitioners specializing in 3 systematic
TCM nourishment image, Ayurvedic rebalancing image, and complementary medicine modalities: TCM, traditional ayurvedic
Anthroposophic strengthening-loosening image. In the third step, medicine, and AM, were asked to conduct a panel based on the
building upon the two initial steps, the authors suggest a practical findings of the qualitative study. The goal of this discourse was to
way to integrate patient’s metaphors and images with various CAM refine the hypnosis intervention tool by expanding on the patients’
archetypical metaphors using a reflective technique, consequently experiences through utilization of metaphors, symbolic archetypes,
developing a practical therapeutic tool. diagnostics and therapeutic techniques, which originate in their
taxonomy and system of thought.
Conclusions: Cultural-sensitive interdisciplinary cross-talk between
different CAM systems can be used for construction of an integrative
guided imagery tool for patients suffering from xerostomia. The Synthesis/Integration
diverse cultural backgrounds of various CAM systems can serve to The authors, through immersion-crystallization (cycles of
enrich metaphorical-based guided imagery tools. data and textual review followed by reflection, intuitive insights
and discussion, until reportable interpretations become apparent9)
INTRODUCTION of the 2-stage reflective process developed a refined hypnosis/
Xerostomia, the sensation of dry mouth, affects almost all guided imagery intervention for patients suffering from radiatio-
patients undergoing radiotherapy for cancers in the head and neck ninduced xerostomia.
area, including the pediatric population.1 Radiation therapy injures
salivary glands, leading eventually to little or no saliva production.
RESULTS
Xerostomia may lead to severe oral disease, nutritional deficiencies, Qualitative Study Process
and a significant negative impact on the quality of life.2,3 Patients may
The main themes that arose from the word processing of the
have oral discomfort and pain, greatly increased susceptibility to
text were as follows: difficulties, ceremonies/practices, images, and
dental caries, frequent oral infections, and difficulty in speaking,
feelings/meaningfulness (Fig. 1, upper section).
chewing, and swallowing. Current therapies for xerostomia are often
unsatisfactory and include salivary substitutes and sialogogues, such
as pilocarpine,4 submandibular gland transfer5 and acupuncture.6,7 Difficulties
Recently, Schiff et al8 studied the efficacy of hypnosis in a pilot study The main difficulty participants expressed was lack of saliva.
with 12 patients experiencing moderate-to-severe postradiotherapy Saliva was the word that was most often pronounced (48 times).
xerostomia. The researchers provided a single hypnosis session Other difficulties were swallowing, speaking, dysgeusia (taste
offering specific suggestions for increasing salivation, followed by disturbance), and unclear pronunciation. The participants stated
daily listening to the recorded session for the duration of 1 month. that they had limited knowledge concerning hypnosis before the
The authors reported that hypnosis elicited a significant global treatment and experienced mixed feelings such as hesitation,
improvement in xerostomia and salivary flow rate. The improvement humoristic amusement, and fear (‘‘What I knew about hypnosis is
in xerostomia was correlated with the number of times patients that people sleep and can stay that way forever, it is frightening, isn’t
listened to the hypnosis CD. To refine the hypnosis intervention, we it? So I thought of it as guided imagery. That helped me to relax.’’).
conducted a 2-level reflective process, including a qualitative analysis
of the original study and cross professional brainstorming. We
applied qualitative research to explore participants’ experiences and Ceremonies/Practices
narratives aiming to identify themes that could contribute to Themes were mainly focused on eating and processing of
construction of a refined guided imagery therapeutic tool. As this food (eg, ‘‘It’s lunch time at work and I don’t have saliva. I pick a
tool is designed for patients with diverse cultural backgrounds, we quiet spot and think about the tap, The water falls and it makes me
sought to enrich it through cross-cultural discourse among 3 major feel good, relaxed and the saliva is coming y I can start eating.’’).
systems of traditional care. For this purpose, we asked practitioners
from ayurvedic medicine, traditional Chinese medicine (TCM), and
anthroposophic medicine (AM) to elaborate on xerostomia-related Images
metaphors through their system’s worldview. We then synthesized the The preliminary recording contained 3 kinds of images: the
dual-level reflective process to suggest an additive/synergistic hypnosis types of food one prefers, lemon, and water. Water was the most
tool for treating patients with radiation-induced xerostomia. powerful image experienced by the participants. Participants experi-
enced various images of water: the sea, waterfalls, waves, splashes,
and sprinkles. Water was also experienced as sounds (‘‘I mentioned
METHODS the Victoria falls, where I can hear the sound of the water not just see
it.’’), color (‘‘The green lawn and the waterfall, I love the place and I
Qualitative Study actually go into it, physically, I’m there, I can see it’’), and taste (‘‘y a
Six months after the completion of the pilot study, participants were taste of metal, like a key or a chocolate wrapping.’’).
contacted to partake in a qualitative study. Of the original 12 Water was also experienced as a changing medium (eg,
participants only 9 were available for contact (1 had died and 2 metamorphosis of rain to water, waterfall and spray). One
others could not be found). Of the 9 who were contacted, only 4 were participant even described this process within himself: ‘‘Turning to
willing to participate in the study. One patient did not show up to the water helped me a lot. I knew that waterfalls, rain, even touching the
scheduled meeting. Consequently, only 3 patients participated in the water that will spray me, would do me good and stay that way.’’
qualitative study. The study was designed as a group meeting ‘‘It is so powerful that when you stand by them you feel the
consisting of the patients, a nurse coordinator qualified in qualitative sprinkles, you get wet and when you open your mouth it also gets
research, and 3 physicians who had participated in the pilot study. wet.’’ Participants could also connect themselves to the watery
Before the meeting, the authors developed a set of open-ended image without using the tape: ‘‘When I don’t feel good, I can pull
questions based on their perceptions of the pilot study. These the images from my head. I don’t actually need the tape now. I go
questions provided a semi-structure for the interview. Patients were into it and feel the moisture; I absorb it and can produce saliva.’’



Psychospiritual Dimensions mouth is a vata phenomenon, since vata is the only dosha
Participants described anxiety regarding hypnosis. They characterized by dryness. So, to sum up, the main imbalance in
were hopeful but skeptical, and were surprised that it helped them xerostomia is in vata, or, more specifically, udana vata, which is the
both physically and mentally. One of the participants described the subdosha in charge of movement upwards and out of the body.
hypnotic process as ‘‘Beyond the saliva, the hypnosis gave you Imbalance of udana Vata is often caused when one blocks the
peace of mind, calmness, tranquility.’’ The hypnotic process was expression of emotions, especially those that may be perceived as
experienced not only as calming but also as a pleasant disconnec- negative or those which assert the person’s will. Udana is also
tion and solitude (eg, ‘‘Twenty minutes, net, you don’t think of aggravated by withholding urges such as sneezing and belching. In
anything; you disconnect yourself from the surrounding; it’s fun.’’ the case of head and neck irradiation, excess pitta caused locally by
‘‘Once you get into it you are disconnected. You are in a place with the radiation produces an accumulation of ama (toxins) in the
the sounds that you hear at that moment.’’). Some participants srotamsi (channels) of the throat area, thus inhibiting the flow of
characterized the impact of the treatment on the way they perceived matter and energy in the region. Blockage of flow is a vata disorder;
their life: ‘‘You gave us a tool for our soul, a tool that helps you go hence the imbalance in udana, which in turn causes bodhaka kapha
on with your life in a better state of mind than before. It was more to dry up. This can be alleviated by vata pacifying methods such as
than just helping with the saliva y it was combined. It gave a good eating sour, sweet, and salty foods. Other tastes, such as the
feeling to go on with your life and not to think about what’s wrong astringent (drying) taste, should be avoided. Ama may be minimized
with you.’’ Another participant concluded this bio-psycho-spiritual by drinking hot, boiled water throughout the day. The throat chakra
perspective as follows: ‘‘It helped me with the headaches and the is balanced by wearing blue colors and chanting certain mantras.
saliva and it also helped me calm myself in all kinds of situations. I
took the hypnosis experience to almost every area in my life.’’ AM Perspective
AM perceives man as a complex of 4 bodies corresponding to
the 4 Greek medicine elements of earth, water, air, and fire (warmth).
THREE CAM MODALITY-BASED The lower bodies include the ‘‘physical body’’ corresponding to the
BRAINSTORM PROCESSES material and measurable mineral realm and the water-related ‘‘etheric
body,’’ the carrier of life and growth forces. The upper bodies include
Defining 3 CAM Diagnostic and Therapeutic the wind-related astral body, the carrier of feelings, which is
Perspectives responsible for emotions, consciousness, movement, desires, and
Towards Postradiation Xerostomia* dreams. The highest member, the I or ego, is identified with the
warmth element and the human spirit, which gives man the ability for
TCM Perspective self-reflection, thinking, creativity, and free will. According to the
Radiotherapy often produces side effects such as dry mouth anthroposophic perspective, radiation weakens the etheric body (life
and throat, low-grade fever, nausea, vomiting, and fatigue. In force), which protects the glands through fluid content. Therefore, on
Chinese medical terminology these manifestations are considered the one hand the mineralizing force of the physical body streaming
to be fire and toxic heat (the radiation), which damage body fluids, from the environment increases whereas, on the other hand, the
cause the spleen and stomach (digestive function) disharmony, and binding of the ‘‘astral-I’’ increases as well to this region, creating a
depletion of the liver and kidney yin (elements controlling blood catabolic-destroying process and dryness of the tissue associated with
and tissue moistening). When the head and neck area are pain. This over binding may proceed to produce local ulcers and
irradiated, heat toxins (the equivalent of radiation in the TCM other signs of overly destructive activity. Treatment principles include
world of metaphors) damage yin in the upper warmer [a theoretical increasing the activity of the life forces through a combination of
construct that mobilizes fluids and Qi (energy) in the upper part of homeopathic low potency of Silver (Argentum metallicum) combined
the body]. The dryness/heat/warmth induced by radiation is related with organotherapy of the gland (Glandula salivaris). This allows the
to pathogenic fire, which tends to flame upward consuming fluids astral and I to be looser and function in harmony with the salivary
and preventing them from moistening the orifices and fluid gland. Imagining water and plants can be helpful in increasing the
passages adequately, resulting in dry mouth. The major organs patient’s own vital forces (eg, creating the picture of a rain forest with
that are affected by radiation and are considered by TCM theory to its watery plants and moisture). In this way the anthroposophic
be responsible for saliva production are the spleen and kidneys. The physician attains relaxation (stress increases the binding of the astral
yin and fluid elements of these organs are targeted by the radiation- body to the gland while relaxation loosens it) that enhances the
induced ‘‘fire.’’ Treatment principles include clearing heat, resol- patient’s healing process.
ving toxicity, generating blood and fluids, and moistening dryness,
specifically of the above-mentioned organs.
*The reader is encouraged to approach the following sections with an Comparative Analysis of the 3 Modalities
open-mind toward the 3-system taxonomy. For example, the 3 The 4 medical CAM practitioners participating in the study’s
modalities’ concepts of organs and functions do not necessarily have brainstorm process were asked to define each system’s approach to
the same meaning in conventional vocabulary. The authors have etiology, diagnosis, and treatment of postradiation xerostomia. Next,
marked these concepts with italics and suggested conceptualizing them they were asked to suggest metaphors that relate symbolically or
as metaphors and acknowledging that they have a deeper and more taxonomically to these diagnostic and therapeutic levels according to
valid meaning in the philosophy of each of the 3 medical systems. the etiology or treatment of the CAM modality. The practitioners
were encouraged to include metaphors that relate to elements of
nature and man, food tastes, colors, sounds, directions, and animal-
Ayurvedic Medicine Perspective like suggestions. Table 1 compares the 3 systems’ approaches to
In ayurveda, the physiology is seen as the product of certain postradiation xerostomia at 4 levels of etiology, diagnosis, treatment
forces known as the 3 ‘‘doshas,’’ whose names are ‘‘vata’’ (the force principles, and corresponding metaphors. Figure 1 (lower section)
governing motion, made of air and space, or ‘‘ether’’), ‘‘pitta’’ (the illustrates the main features of each of the 3 modalities with regard to
force governing metabolism, made of fire and water), and ‘‘kapha’’ postradiation xerostomia. Of these features, the authors condensed 3
(the force governing growth, made of earth and water). Each dosha archetypal images stemming from the 3 system modalities: (1) TCM
is divided into 5 subdoshas. The production of saliva is a function nourishment image that holds a cool (dew)—fire (vapor) polarity,
governed by the bodhaka kapha subdosha. Imbalance in bodhaka suggesting flow, filtration, and exhalation. (2) Ayurvedic rebalancing
kapha is often caused by an overload of information on the senses image that maintains harmony between water and earth elements in
and the nervous system. Such a situation, although it influences an upward and outward direction. (3) Anthroposophic strengthening-
Kapha, is essentially a vata situation. Additionally, bodhaka is loosening image that maintains dual processes of strengthening the
energetically linked to the throat chakra, which is the same chakra water/plant-like element (the etheric) and loosening the upper bodies’
influencing the udana vata subdosha. On top of that, dryness of the connection as reflected by a calm soft rain forest image.



TABLE 1. Comparative Approach of 3 CAM Modalities to Postradiation Xerostomia
Traditional Chinese Medicine Ayurvedic Medicine Anthroposophic Medicine
Etiology Radiation by virtue of its toxic heat Radiation causes excessive pitta dosha Radiation weakens the etheric body
nature depletes fluids and yin in the (fire element) and blockage of and thus the mineralizing forces of
body, specifically in the upper warmer. srotamsi channels, for example, salivary the physical body increase. The
This leads to vacuity of meridians with ducts that causes an excess of ama binding of the astral-I increases as
Qi stagnation and susceptibility to evil (waste products) and local excess of well creating a catabolic-
external factors (wind/heat/cold) vata dosha (associated with the destroying process and dryness of
elements of air and ether) the tissue associated with pain
Diagnosis Yin-Yang diagnosis: yin deficiency with Dosha diagnosis: Local excess of Four body diagnosis: physical:
false excess yang5-elements diagnosis: udana vata, located energetically increased influence etheric:
fire counteracting (insulting) water in the throat chakra. It may be depleted Astral: too active Ego:
and overacting earth associated with inability to express too active Neurostenia
feelings
Treatment Nourish yin. Nurture earth and water Re-balancing udana vata and Strengthen the etheric, loosening the
elements. Gently reduce heat. Avoid decreasing ama (waste products). binding of the I-astral connection
hot spicy food (alcohol, fat meat), prefer Consuming food with sour, salty to the gland. Use of silver and
mildly cooked vegetables, whole grains. and sweet tastes and avoiding organotherapy in low potency
Moving, meditation, and breathing astringent, pungent, and bitter tastes.
(Qi Gong)
Metaphors Nourishment Cool condensed water Rebalancing Water and earth elements Strengthening Rain forest, water,
and blood. Vapor and dew; taming (generate saliva); sour tastes (also and plants, calmness, soft sounds
fire/dragon; fertile earth with sweet, and salty); Tuning an upward
rejuvenation; flow; filtration of heat and outward movement blue color;
toxins/exhalation of heat toxins with Sounds: ham and hem mantras
vapor Animal-like: Wolf

Combining Patients’ Metaphors With the 3 CAM not aware of the potential practical arsenal of images and
Systems’ Perspectives metaphors these systems can offer. The concept of integrative
rather than complementary medicine implies not only conventional-
Figure 1 compares patients’ perspectives and images (upper CAM collaboration but also an inner collaborative interdisciplinary
section) with the three CAM systems’ perspectives and images discourse among various CAM modalities. Such an interdisciplin-
(lower section). In between, an interrelation of the patients’ images ary discourse was previously suggested by Schiff et al10 with regard
and the 3 CAM systems’ archetypal images may be viewed. For to the potential synergism between hypnosis and acupuncture.
example, a patient experiencing an image of ‘‘waterfall’’ may be Moreover, each of the 3 modalities of TCM, ayurvedic, and AM
attached to a TCM nourishment image of flow and filtration. encompasses intrinsic meditative and mindful practices, such as Qi
Furthermore, patients may be encouraged during a guided imagery Gong, yoga, and meditation exercises, respectively. These body-
session to consider Please verify change of word ‘condider’ to mind-spirit modalities are potential bridges to interdisciplinary
‘consider’.archetypes of nourishment, rebalancing, strengthening, collaboration with regard to guided imagery and hypnosis sessions.
and loosening. These archetypal images may also be used by This CAM systems collaboration is based on cross-cultural respect,
directing the patient to his/her senses (tastes, colors, sounds, etc.), which accepts diversity of thought and outlook, on the one hand,
breathing (eg, emphasizing exhalation, ‘‘loosening,’’ ‘‘letting go’’), and openness toward emerging metaphors that can be communally
or spiritual contemplation (eg, image of ‘‘becoming water’’ shared by different CAM scholars, on the other hand. The journey
suggesting metamorphosis: ‘‘Which water image may I identify we experienced along the path of developing the guided imagery
with? How flowing may my life be’’?). tool for patients with xerostomia, is concluded with mutual
satisfaction and belief that collaboration is indeed rewarding to
DISCUSSION patients and practitioners alike.
In this study, we describe a process beginning in a
quantitative clinical study based on uniform hypnosis intervention ACKNOWLEDGMENTS
aimed at improving xerostomia of patients after radiation to the
head and neck region. With the goal of developing an individual- The authors thank Ms. Marianne Steinmetz for editing the
based guided imagery tool, we explored patients’ experiences manuscript. The authors also Drs Jorge Mogilner, Eyal Sella, Ilana
Doweck, Oded Hershko, and Noam Yarom for their contribution in
qualitatively and extracted a rich spectrum of metaphors and
the pilot study on Hypnosis for Postradiation Xerostomia in Head and
images relating to moisture. We further strived to echo these images
Neck Cancer Patients.
and metaphors with archetypal gestures suggested by 3 well-
structured systems of complementary and traditional medicine. We References:
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head and neck malignancies. Int J Radiat Oncol Biol Phys. crucial. Avoid being too close or too far away physically (within 2
2001;50:353–357. feet is a comfortable range) because being too close can make them
7. Wong RK, Jones GW, Sagar SM, et al. A Phase I-II study in uncomfortable or too far can make them feel rejected (it depends
the use of acupuncture-like transcutaneous nerve stimulation on the culture).
in the treatment of radiation-induced xerostomia in head-and-
neck cancer patients treated with radical radiotherapy. Int J Hand Movements
Radiat Oncol Biol Phys. 2003;57:472–480. Our hands are very expressive. Open gestures tend to make
8. Schiff E, Mogilner GJ, Sella E, et al. Hypnosis for post- us appear open and honest. Hand gestures can make us seem
radiation xerostomia in head and neck cancer patients: a Pilot enthusiastic and committed to our topic. However, making
Study. J Pain Symptom Manage. 2009 [Epub ahead of print] wringing our hands, touching the face, etc. can make us appear
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hypnosis and acupuncture—Is the whole more than the sum of Eye contact is one of the most important aspects of dealing
its parts? Evid Based Complement Alternat Med. 2007;4:233–240. with others, especially with the patients. Maintaining good eye
contact shows respect and interest in what they have to say. So it is
very important for an oncologist to maintain eye contact because it
Body Language in Cancer Patients’ Care helps the patient to develop trust in them. If the patient finds that
Gabriel Raam, PhD. Hod Hasharon, Israel. the oncologist is not ‘‘looking at them when they are being spoken
No doubt clinicians, counselors, and oncologists, in particular, are to, they feel uneasy.’’ Always an oncologist should keep in mind
faced with difficult conversations on a regular basis. Informing that they have to avoid staring, glaring, or looking away during the
a patient about a cancer diagnosis, the fact that a tumor is process.
inoperable, the recurrence of disease, or the progression of disease
are daily challenges for many oncologists. Considering the Posture
frequency of bad news in the cancer setting, and the shortfall of Our posture can convey our level of self-confidence. Also by
words in such situations—it seems that perhaps not many onco- orienting our body toward patients, we show attentiveness. By
logists are aware of the fact that when we talk about communica- falling away from them or leaning back, we show a lack of interest
tion skills, the verbal skills constitute only about 7% out of the and some level of reserve. Oncologists should not hunch their
total impact, whereas the nonverbal skills are about 93% from the shoulders and keep their heads down because this may give an idea
total impact. that he is feeling low in confidence and want to hide away. A
With it, nonverbal communication is the one form of communica- relaxed body posture will help us to appear more confident.
tion that is often overlooked. What we communicate to patients
with our body language and other aspects of body language in Head Position
patient care deals with the emotional reaction of patients and our To feel confident and self-assured keep the head level both
own emotions when we give bad news. horizontally and vertically. The oncologist can use this straight
The body language we use decides, to a large extent, the quality of head position when they want to be authoritative and what they are
our communication. For example, an oncologist may wish to be saying to be taken seriously. Conversely, when we want to be
accurate when passing on the bad news, so he may glance often at friendly and in the listening, receptive mode, tilt the head just a
the computer screen, not being aware that missing frequent eye little to one side or other. We can shift the tilt from left to right at
contact at this crucial stage may cause a strong negative emotional different points in the conversation.
reaction in the patient.
But nonverbal communication is important not only when passing Points in Establishing Rapport and Trust
bad news, also observing the body language of the patient may Matching and mirroring.
contribute essential clues about his emotional state. You will The importance of pacing.

suddenly see and understand things you might have only vaguely
feeling from time to time. Matching voice (over the phone and in person).
Matching body language.
Matching breathing.
SOME QUESTIONS Paired exercises
Do you want pick up information about your patient’s
personality, mood, and pain level? Points in the Power of Touch
Do you want to gain the eyes and attention of your patients? What is appropriate touch depending on pain level and gender?
Have you wanted to establish rapport to make your patient The humanistic significance of touch.
at ease?
Nonverbal awareness includes
The best way to hold your hands to show that you are being
open and friendly. TIPS FOR GOOD BODY LANGUAGE
The difference between a real smile and a false smile. COUNSELING
What part of the body is the most ‘‘honest?’’ Adopty
How to read pauses.
Be relaxed and attentive. Always lean forward, which shows our
What space and territory reveal. interest toward them.
What is the best way to ‘‘catch’’ a liar? Keep your facial expressions relaxed and friendly.



Move purposefully; it shows confidence. Blackmask Online
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Constance E. Obudho (1979). Human Nonverbal Behavior. An
annotated bibliography. Greenwood Press. Hill.
H. Papousek and U. Jurgens (Eds.). (1992). Nonverbal Vocal
¨
Communication. Comparative and Developmental Approaches.
Cambridge University Press. Delirium in Cancer: A Multidisciplinary Approach
´ ´ ´
Jose Parejo (1995). Comunicacion no verbal y educacion. El cuerpo Amira Morag, RN, MA. Head Nurse of Davidoff Cancer Center,
´
y la escuela. Paidos. (In Spanish). Bielinson, Rabin Medical Center.
Stephen Rogers Peck (1998). Atlas of Facial Expression—An A 56-year-old man with lung cancer was admitted to the oncology
Account of Facial Expression for Artists, Actors and Writers. ward with delirium requiring heavy sedation. A month before
Oxford University Press. admission his family noticed progressive deterioration in his
Pierre Philippot, Robert S. Feldman, and Erik J. Coats (Eds.). behavior, including refusal to attend medical reviews, confusion
(1999). The Social Context of Nonverbal Behavior. Cambridge and increasingly aggressive and violent behavior. History from the
University Press. family further revealed an inability to concentrate, auditory
Sally Planalp (1999). Communicating emotion. Social, moral, and hallucinations, and paranoid ideations about his wife wanting to
cultural processes. Cambridge University Press. hurt him. His family was distressed and frightened, due to their
Fernando Poyatos (Ed.). (1988). Cross-cultural Perspectives in inability to help and his terrifying out-of-character behavior.
Nonverbal Communication. Hogrefe Huber Publishers. In oncology the incidence of delirium ranges from 18% to 85%.1,2
Phillip Prodger (1997). An Annotated Catalogue of the Illustrations Frequently, the etiology of delirium in cancer is multifactorial and
of Human and Animal Expression from the Collection of Charles often life-threatening. Although delirium per se is a poor prognostic
Darwin. Edwin Mellen Press. See also this site. indicator in cancer, many studies indicate that delirium is reversible
James W. Redfield (1852). Comparative Physiognomy; or, even with advanced disease if the underlying cause can be treated.2
Resemblances Between Men and Animals. Redfield. Full text; Lawlor et al3 noted common treatable causes of delirium included
pdf files of the ancient book pages. New link. psychoactive medications, opioids, and dehydration; irreversible
Martin Remland (1999). Nonverbal Communication in Everyday causes of delirium included hypoxia and metabolic disturbances.
Life Houghton Mifflin. Delirium has long been underdiagnosed and poorly managed by
Virginia P. Richmond and James C. McCroskey (2000). Nonverbal nursing and medical staff. The nature of delirium means that family
Behavior in Interpersonal Relations. Allyn Bacon. members and staff are often slow to recognize the problem and
Robert W. Rieber. (Ed.). (1990). The Individual, Communication, subsequently communicate poorly between themselves leading to
and Society. Essays in memory of Gregory Bateson. Cambridge impaired symptom assessment and delayed treatment decisions.3
University Press. Delirium independently increases morbidity and mortality, treat-
´ ´
James A. Russell and Jose Miguel Fernandez-Dols (Eds.). (1997). ment costs, and stress in caregivers.
The Psychology of Facial Expression. Cambridge University A comprehensive multidisciplinary delirium protocol in our cancer
Press. center could improve diagnosis, management and outcomes. Our
Klaus R. Scherer (Ed.). (1988). Facets of Emotion. Recent Research. proposed protocol would include the CAM/Nu-DESC nursing
Lawrence Erlbaum Associates. assessment tool, anamnesis and diagnostic tests to: define the
Klaus R. Scherer and Paul Ekman (Eds.) (1984). Approaches to etiology, identify medications, identify patient safety matters and
Emotion. Lawrence Erlbaum Associates. family education. In parallel an evaluable nursing education
˚ ´
Ullica Segerstrale and Peter Molnar (Eds.). (1997). Nonverbal program to improve clinical assessment and management of
Communication. Lawrence Erlbaum Associates. delirium would be implemented. Nurses need to be trained to be
H. K. Shukla (1994). Semiotica Indica: Encyclopaedic dictionary of aware of the subtleties of clinically mild-to-moderate delirium,
body-language in Indian art and culture (2 volumes). New Delhi: especially in the geriatric oncology population and patients with
Aryan Books International. (Ashok R Kelkar’s review). multiorgan impairments. Early identification of delirium often
Aron W. Siegman and Stanley Feldstein (eds.) (1985). Multi- points the way to an hitherto unrecognized malady and leads to less
channel Integrations of Nonverbal Behavior. Lawrence Erlbaum severe delirium and shorter hospitalizations. Enjoining nurses and
Associates. doctors to work more efficaciously in identifying delirium in a
Aron W.Siegman and Stanley Feldstein (eds.) (1987). Nonverbal multidisciplinary approach would improve the quality of life for
Behavior and Communication. Lawrence Erlbaum Associates. the patients and their family as well.



References: SUMMARY
1. Gaudreau JD, Gagnon P, Harel F, et al. Fast, Systemic, and The medical world has long recognized the connection
continuous delirium assessment in hospitalized patients: the between a person’s body and mind to ensure a better quality of
Nursing Delirium Scoring Scale (Nu-DESC). J Pain Symptom life. Parallel to palliative medical treatment, it is of the utmost
Manage. 2005;29:368–375. importance for patients to maintain continuous contact with family
2. Ljubisavljevic V, Kelly B. Risk factors for development of and friends. Although formal research has not been conducted on
delirium among oncology patients. Gen Hosp Psychiatr. 2003; this subject, patients and family members have related positive
25:345–352. feelings about meeting and photographing their parents, children,
3. Lawlor PG, et al. Occurrence, causes and outcome of delirium in and grandchildren in the hospital and at home as a means for coping
patients with advanced cancer. Arch Inter Med. 2000;161: with a very difficult situation.
2467–2473.

Cancer and the Family: The Myth of Words and Silence
Family Interaction and Communication During Palliative Lea Baider. Psycho-Oncology Services, Sharett Institute, Hadassah
Treatment Medical Center, Jerusalem, Israel.
Debbi Wolf, MSW. Italian Hospital Oncology Department, Haifa,
Israel. She opens her mouth in wisdom, and the lesson of kindness is on
her tongue (Proverbs 31:26).y At this moment, witnessing my own
illness and impending death, my family wanted to stay connected to
INTRODUCTION me, willing to assume the risks of knowing a different side of
me y.y To witness glimmers of hope and shadows of fear,
A major goal of palliative care is to achieve the best possible
entrenched by constant doubts y.y As a family, we contemplated
quality of life for patients to relieve their suffering and improve
matters of life and death, and together created the expectation that
their quality of life. This entails treating, controlling, and
we would never have to face illness and death alone y or that we
preventing pain and its symptoms along with attending to the
would never be alone to witness the irrevocable intrusion of death
patients’ psychologic, social, and spiritual needs. When patients are
into our family life ....1
calm and comfortable, they are more willing to participate in the
treatment process and amenable to contact with family and friends.
There are numerous palliative treatment modalities INTRODUCTION
and coordination is necessary so that they proceed efficiently and
smoothly. There is trained and skilled medical, nursing, and Families Matter
psychosocial treatment by doctors, nurses, laboratory and radio- They matter because they provide the context of adjustment
therapy technicians, housekeeping staff, social workers, psycholo- in which the person with cancer responds to his or her disease. When
gists, physical therapists, occupational therapists, and various a person develops cancer, it is family members who provide the
complimentary medical staff. There are also family members, background for this adaptive or threatening experience. The family
friends, and acquaintances and it is important for the patient to itself is profoundly affected during the entire trajectory of the illness.
meet with them to ally his/her fears and concerns regarding what is Family adaptation to cancer diagnosis is a continuous
occurring outside the hospital setting. How can parents, children, process with many critical cycles. It can be seen as a threat and an
grandchildren, and friends be positively involved in the treatment opportunity, and as a chance for resilience, recovery and a
process and visit hospitalized patients? How can patients calmly challenge for new modes of adaptation.
receive visitors and not alarm them by their hospital appearance? The patient and the family are products of their social and
cultural context. The ways in which they cope with cancer are a
result, in large part, of the way in which their culture and society
Family and Friends Involvement appraise serious illness in general and cancer in particular. When
As a social worker I have learned that it is essential for we deal with a family, therefore, we are dealing with how that
family members and friends of all ages to visit hospitalized pati- particular family has functioned as a unit and with broader social
ents and maintain verbal and visual contact. All religions have and cultural factors that dictate how it will perceive and react to
commandments about visiting the sick. I encourage families to specific illnesses.
inform all family members, including young children about the
patient’s medical and physical condition and then to bring them to FAMILY COMMUNICATION
the hospital for a short visit. Children are encouraged to draw
pictures, make get well cards for the patient, present them to the Silence is often the finest and most eloquent response y
patient, and during the visit have their picture taken with the (anonymous).
patient. I also encourage meetings between estranged children and
their parents and where possible to have children who live overseas Illness within the family necessitates sharing and commu-
come and visit the patient while he is still coherent. When patients nicating. The family’s collective perceptions shape the meaning of
go home for weekend visits I encourage family members to take the illness for each member. The family’s appraisal of illness is an
numerous pictures of the patient together with family and friends, integral part of living together. Socially constructed meanings of
print them for the patient to have next to his bed and save them illness include understanding how family members are expected to
to a disc. Children who are involved in the treatment and communicate with one another when someone begins the long
hospitalization process find it easier to accept a difficult situation; trajectory of cancer. They invoke a family legacy of sharing or of
they ask simple and direct questions for clarification, and are better silence, which is learned from one generation to the next.
prepared to relate to what they read and seen in the media and on Until recently, there has been a notable lack of attention to
the internet. the presence of adaptive models of communication patterns within
Twenty years ago there were no cell phones, computers, or the family system that coexist with the chronicity of cancer. Family
Web cams. I obtained a tape recorder and had patients record a members find themselves catapulted into an unfamiliar environ-
message to their family. The tape cassette went home with a family ment where they have little or no time emotionally and
member and was returned a few days later with a response. This psychologically to incorporate the diagnosis of a life-threatening
helped alleviate fears and anxieties on both sides. Today commu- illness into their lives.2
nication is simple and uncomplicated; cell phones and digital Cancer is often so pervasive that the family members are
cameras are ubiquitous there are also laptops, internet, IM, SMS, generally unaware of the impact it plays in shaping the social image
and DVDs to maintain continuous and steady contact. of this new reality within the family milieu. Each cancer patient



reacts in a different way, just as each affected family member reacts difficult; intrafamilial communications on this subject were
differently. Communication is often constrained by a lack of frequently discordant and guarded.
knowledge and conditioned by the time of diagnosis or one’s life There has been limited evidence explaining the lack of
span, leading to a constant reassessment and transformation of the family communication about cancer. Some earlier studies indicated
affected family members. Interaction with the cancer patient and that patients’ maladjustment to cancer was significantly associated
the family unit must be constantly constructed, redefined, with deterioration of family communication.13,14 Other studies
negotiated, and renegotiated during the entire journey along the have suggested that cancer-induced stress strain family relation-
illness trajectory.3 ships and, consequently, family communication.15,16 One study of
Family members can be supportive of one another through 41 families of early breast cancer patients reported that the degree
their own mode of silent or verbal communication. Some family of patient-spouse congruence regarding issues of concern and the
cultures value quiet acceptance of difficult events over which they necessity for discussion of these issues significantly affected whether
have no possible control; others value open discussion of feelings as and how much the couple talked about cancer.11
a way to enhance their sense of well-being.4 Family interaction in Zhang and Siminoff17 examined the phenomenon of
terminal illness could have 3 levels of awareness: (1) verbalized avoidance of family communication about cancer. A total of 50
though not always heard, (2) conscious but not verbalized and caregivers and 26 families were evaluated. Interviews were
usually because of fear of anger or disapproval, and (3) denial of audiotaped and transcribed. Two-thirds (65%) of the families
any possible verbal expression. Each member of the family acts as experienced communication problems. The avoidance of commu-
though the other ought to be aware of the terms of the nication and the participants’ narratives pointed to 3 distinct
interaction—words or silences—and is hurt and angry if the thought processes that contributed to the phenomenon of silence:
‘‘other’’ does not live up to the family’s terms of concealment. avoidance of psychologic distress, desire for mutual protection
Members who behave like this do not accept each other’s real needs against harmful situations and belief in positive thinking.
and identity; each wants the other to conform to an internalized Effective family communication hinges on the exchange of
family model and punishes the other when these unrealistic information of all its members about feelings of self and others,
expectations are not fulfilled. Each family constructs its own allowing permissiveness and acceptance of independent and diverse
reality and its own family myths.5 thoughts.
Duck18 argues that the essential elements of context that
guide interpretation of messages are tied to a particular ‘‘time’’ in
FAMILY COMMUNICATION: the historical and cultural moment and place, the history of family
EVIDENCE OF RESEARCH relationships, and the sequence of events that comprises a meaning
The ability to communicate effectively is a critical aspect of of these events at a particular time.
healthy functioning in most families. When chronic illness is In a randomized study by Byrne et al,19 male and female
present, it becomes even more important; because there are more cancer patients were interviewed about how their family unit was
decisions to be made, more problems to be solved, and complex affected. Almost all of the patients expressed the importance of
medical information that is often ambiguous or contradictory. concealing feelings of distress and unhappiness, stemming from a
Blum6 presented a view of communication as a collective need to protect family and friends. Being ‘‘normal’’ was one of the
action. Communication involves a level of shared intentionality most significant factors, such as maintaining or returning to
and interrelationship as ‘‘we’’. In couple/family conversations, we familiar routines and roles.
create contextual frames, each bounding a set of interactive When communication becomes ineffective, family members
messages, and sharing a common premise of mutual relevance are likely to engage in mutual criticism and to withdraw. When
within the illness process. forced by the illness circumstances to be together, they are likely to
One of the most compelling and confounding features of dismiss problems or avoid discussing them. They resort instead to
encounters in family relations is the tendency for the individuals to wishful thinking or stonewalling; or alternatively, they may engage
construct profoundly different interpretations of the same illness in overly hostile and conflictual interactions.20
event. These differences seem to increase as antagonism and In a cross-sectional cohort study on caregiver-patient
disagreements about suitable patient care intensify. The family may communication, Fried et al21 described that 39.9% of caregivers
provide varying interpretations for communication, according to its desire more communication, 37.3% reported that communication
own subjective needs, as it assigns emotional meaning to each message was quite difficult, and 22% said that patients refused any open
about the treatment procedures, relapse and illness outcomes.7 dialogue. Caregivers’ desire for increased communication may be a
Beach8 reported that family communication is a course of modifiable determinant of caregiver burden. However, caregivers’
constant testing, negotiation and readjustment between family desire for increased communication was independently associated
members, the patient and the physician. It is an evolving process with increased caregiver burden, measured in terms of emotional
that is mediated by the manifold appraisals and meanings given by distress. Burden was associated with patients’ covert and detached
each family member to illness, loss and the proximity of death. interaction.
The results of a series of 48 interviews with hospital nurses Mutual protection plays a central role among family
and medical staff dealing with terminal patients in New York City members in communication patterns about illness. Patients some-
revealed that the most difficult part of the job was communicating times become secretive and reluctant to reveal any feelings not to
with the families. The majority of the respondents declared that overburden their family or destabilize its cohesive structure.
families are too emotional, irrational, do not understand what is It was reported in a randomized study by Boehmer and
going on and question everything. Therefore, the staff gave priority Clark22 that men diagnosed with metastatic prostate cancer had
only to the individual patients and not to their families. When blocked any communication about the illness with their wives by
families fail to conform to expected behavior or disagree with hiding their feelings of despair and fears of death.
medical professionals, they are labeled as ‘‘imposing,’’ ‘‘demand- Nevertheless, when patients avoid or deny the reality of the
ing,’’ and ‘‘dysfunctional.’’9 illness or indicate that they are unwilling to discuss any treatment
Communication flow within the family may largely depend details, it is important to respect this protective shell of denial, to be
on the desires of the patient.10 As cancer progresses, family supportive of this ‘‘conspiracy of silence,’’ and to wait for a signal
communication becomes increasingly intermittent.11 In a study of readiness and openness to share the familial quandaries
conducted in the early 1980s, Chekryn12 reported that 40% of concerning the cancer experience.23
patients and 30% of spouses did not talk about cancer recurrences Illness is exacerbated or alleviated primarily by the
together. Even when patients and family members did commu- significance that an individual attaches to the experience. From
nicate, they did not share the same understanding of the recurrence the perspective of family communication, the focus is on how
and talked about it only to a limited extent. As patients approached family meanings are provided, inscribed, reflected, or modified. A
the end of life, talking about death and dying was particularly basic developmental challenge for the family should be how to



evolve a meaning for the illness experience that promotes a sense of contributes to their sense of bonding and trust in each other. They
competence and mastery. Cancer often is seen as a betrayal of our create and manage privacy boundaries by granting or denying
fundamental trust in existence and human invulnerability. Thus, it access to private information.29 Many family secrets involve
creates an empowering narrative that becomes a formidable and information that some members keep from others within the same
challenging task for family equanimity.24 family. Bonding with one member by sharing private information
may simultaneously betray another member.
FAMILY NARRATIVES The above dialogue presents a challenge to our under-
standing of family communication about cancer. Although early
y The intimacy that I had with being as sick as I was y I just research indicates that the communication between cancer patients
cannot give it to you in words y words that lie at the heart of my and their family members are fraught with problems, that research
family y words that do not need sounds y.Creating a new has provided only fragmentary explanations. The existing evidence
language together on the long journey of cancer in the family y implies that patient-caregiver congruence or discordance affects
(private diary of a patient). family communication. Psychologic processes that are associated
with family communication under cancer strain remain largely
Narratives are just one form of communication, shaping the obscured by cultural myths, silences, hidden words, and unspoken
perception of life events in terms of ‘‘origins’’ and ‘‘outcomes,’’ and fears and anxieties.17
fostering a sense of temporal flow. They are a means through which Nonetheless, every family communicates within an intimate
family members can create and expose realities of family life. The comfort zone that evolves over the life cycle. If the illness-framing
stories that they tell within the family are ‘‘acts of meaning.’’25,26 event in the family relationship is defined strictly as ‘‘my disorder
Telling their stories become a form of internal control for and my problem,’’ it traps the illness within that individual. This
the patients, allowing them to gain a greater understanding of increases the risk that the healthy members will exert power,
themselves and to share within the family unit. By eliciting and control, and censure over the ill member, and seriously challenges
presenting narratives that are shared among family members, they their roles and sacred boundaries. If the condition is framed as a
are able to learn how illness can be a nonthreatening commu- conjoint issue, then the family acknowledges the physical and
nicative phenomenon. psychologic burdens allowing for a more positive and flexible
Families continue to struggle to maintain and restore reassessment of the illness-related roles of the patient and family
narrative coherence in the face of unanticipated, ambiguous, and members.30
chaotic contingencies of the illness. Suddenly, a family must We envision communication with families and the health-
reappraise where they have been and where they are going as a care system as the footprint for developing an ethic of negotiation
‘‘family,’’ who they are to one another, and how they will share and accommodation, a balance that should be the basis for
their innermost solitudes and fears.27 reciprocal responsibility, integrity, commitment, and unquestion-
Everyday, family members decide whom to tell and not to tell able trust.
about their illness. Some individuals may tell only one member and Ivan Boszormenyi-Nagy and Ulrich31 stress the idea of
others may find solace in inviting many people to share in their ethical accountability within families. Good family relationships
experience. Some of the members may be psychologically unprepared include behaving ethically with other family members and
to hear and communicate the diagnosis or prognosis at that specific considering each member’s welfare and interests within their own
moment. Silence may be the natural consequence of not being able to norms and mores of behavior. Nagy and Ulrich believe that family
recognize the explicit truth about the illness, accompanied by members owe one another loyalty, and that they acquire merit by
responses of overwhelming grief, despair, loneliness. supporting each other. To the degree that parents are fair and
responsible, they engender loyalty in the older children. However,
WORDS OF SILENCE y parents create loyalty conflicts when they ask the adult members to
be loyal to one parent at the expense of disloyalty to the other.
The patient, a 70-year-old mother, diagnosed with terminal
cancer, in the hospital. Her family consisted of 2 adult daughters.
‘‘y I am so tired,’’ mother sighed. She had agreed to have a young
Jesuit priest, a friend of the family, visit her at her bedside this THE END y
afternoon.‘‘Would you like to put him off?’’ I asked.‘‘No, no. I One day it occurred to a certain emperor that if he only
shall close my eyes; I won’t have to talk. You and your sister will knew the answers to 3 questions, he would never stray in any
talk with him.’’Mother closed her eyes, and from her inner fears she matter.
asked, ‘‘Do you think I shall go there to the small church again?’’I
had never seen such a look of unhappiness on her face y and that y What is the right thing to do?y Who is the most important one?
day she guessed, through our silence, that there was no hope for Those who are closest to heaven? Those who know to heal the
her y.‘‘So I am getting worse, since you are both staring at me in sick?y When is the best time to do things? There is only one
silence,’’ she murmured. Once again, I pretended to be cross. ‘‘We important time and that time is now.The most important one is
are staring because you are in low spirits!’’y.At that time, the always the one you are within this moment.The most important
truth was crushing her; and when she needed to escape from it by pursuit is making that person, the one standing at your side, happy,
talking, we were condemning her to silence. We forced her to say for that alone is the pursuit of life.And the most important thing to
nothing about her anxieties and to suppress her doubts and do is to forgive and to care.32 Can the healthcare professional
thoughts, as had so often happened in her life. She felt totally alone challenge the perception of family beliefs and myths, particularly
and misunderstood y.y And we did not know what to say and since his/her perception is not necessarily a true assessment of any
how to say y. Our words became an anomalous language of family but rather a subjective observation of specific moments in
silence y.’’28 their life-long history. The clinical task should be to elicit a sense of
objectivity: exploration, clarification, acceptance of different
All verbal and nonverbal behaviors, including silence, realities, and a family narrative. This should be done in an
convey interpersonal messages. In every form of communication, empathic, compassionate, respectful manner, emphasizing family
each family member defines the nature and quality of the strengths and experiences of adjustment, mutuality, togetherness,
relationship. Here the sound of communication is uniformly and hope.It is essential for the healthcare professional to listen and
consensual in one voice and one clear message. The secrecy of learn from the sound and meaning of words and silences about
illness is also a clearly mutual family consensus regarding care, health and illness that encourage families to reveal their stories of
caregiving and silence. These rules serve to maintain a stable system being understood, discredited, or stigmatized, and those who share
by prescribing and selecting their own family secrecy. Family their stories of being heard, supported, and emboldened. In this
members collaborate to keep painful information private, which manner, we can better understand and functionally empathize with



the challenges faced by the individual and family in their long 27. Jorgenson J, Bochner AP. Imagining families through stories
journey with the illness experience.33 and rituals. In: Vangelisti A, ed. Handbook of Family
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24. Wright LM, Watson WL, Bell JM. Beliefs: the heart of healing that experience is for those who live it. An integral part of
in families and illness. New York: Basic Books; 1996. understanding the reality of the experiences of individuals is the
25. Baxter L, Braithwaite D. Performing marriage: marriage construction of an organized, integrated description of a phenom-
renewal rituals as cultural performance. South Comm. 2002; enon related to an area of concern. A clear theoretical under-
J 67:94–109. standing and articulation of the phenomenon provides a common
26. Bruner J. Acts of Meaning. Cambridge, Massachusetts. language and a point of relativity for nurses, which have potential
Harvard University Press; 1990. for universal application. Without this common understanding,



ambiguity and confusion occur which not only impedes the future needs, but the clients also serve as a source of referrals who
development of theoretical constructs, but essentially disallows recommend the private establishments to friends and family,
progression in the implementation of caring nursing practice. thereby sustaining the long-term viability of private hospitals.
Health services around the world often refer to quality Cancer care services in Cyprus are provided by hospitals in
nursing care, however the interpretations of the concept are the public sector, which are able to deliver the sophisticated care
numerous and often ambiguous. The concept is used with an required by patients with cancer. Further to the scarcity of such
elusive context, open to various interpretations and understandings services in the private sector, the high cost of the private cancer care
leading to an over conceptualization of the concept and causing services also pose as an inhibiting element for choosing to pay for
confusion. Quality has been termed as a ‘‘nebulous concept’’1 such services.
because it lacks constant definition in the literature2 and because
terms such as quality assurance, standards of care, and quality
control are often used interchangeably.3 Therefore, analyzing or METHOD
interpreting a concept as this paper aims at, helps ‘‘to clarify
overused, vague, conceptsy so that everyone who subsequently
Design
uses the term will be speaking of the same thing.’’4 By analyzing a This was a Phenomenologic Hermeneutical study inspired
concept, it ‘‘becomes useful and meaningful in the discipliney a by Paul Ricoeur.13–17 The decision to apply this approach was led
critical step in the process of developing knowledge related to by the fact that the inquiry into the nature of the quality of nursing
concepts of interest in nursing’’.5 care constitutes both an ontologic and epistemologic venture; it is
Any attempt to improve the nursing care (and its’ quality) the study of the nature of nursing and of nursing knowledge.
must begin by drawing upon a shared understanding of the term. Why hermeneutical? The meanings of ‘‘quality nursing
As with nursing care, different definitions for quality nursing care care’’ and the practices that improve or obstruct its provision are
have also been introduced by nurses and patients.6,7 On the same expressed in narrative interviews and focus groups, which were
topic, Gunther and Alligood assert that ‘‘the definition of quality tape-recorded as well as written down, therefore producing texts
nursing care from different perspectives varies: society judges that could be interpreted. Therefore, the research method needed to
utilitarian benefits, payers the economic outcomes, patients the be hermeneutical.
personalized attention received, and providers the congruity with Why phenomenologic? When patients and nonpatients
professional worldviews and standards.’’ informants talk about the provision of quality nursing care, they
Patients’ values and perceptions must be acknowledged to are themselves interested in the good or bad practices in these
make care evidence based and to meet the demands of quality situations. As a researcher, I wanted to understand the practices as
improvement processes while making morally good decisions in these were expressed in the narratives and focus groups. The
relation to the care. Studies have identified important aspects of narratives and the focus groups are about these specific practices. It
good care from the patient’s perspective. These include telling them is not the texts that are the subject matter to be investigated, but the
in understandable language what is important for them to know perceptions (lived experiences) expressed in them.
about the disease and treatment, being honest with them about
their medical conditions (truth-telling), listening to them, checking Aim
their perceptions (religious and spiritual beliefs and norms) before The aim of this study was to describe the lived experiences
initiating action and helping them in their thinking with regard to of patients with cancer and their advocates in relation to the
their disease and treatment.8–10 Information seems to be essential nursing care they receive in oncology departments. In the light of
for patients to feel empowered and gain control, often expressed the patients’ and advocates’ experiences, the views of the nurses
through the participation in decision-making processes.11 providing care to patients with cancer were also explored.
According to today’s figures, 1 in 3 people will be diagnosed
with cancer at some point in their lives, and 1 in 4 of the population Participants
will die from the disease whereas nearly all patients with cancer are The study was undertaken in Cyprus during the period of
hospitalized at some point of the disease trajectory.12 Nurses are 2006-2007 and the participating hospitals included the 3 major
key professionals in the delivery of expert care to people with urban hospitals that provide in-patient cancer care (including
cancer. Therefore, it is essential that the structure, training, and surgical treatment). The empirical data derived through a series of
education of the nursing workforce provides nurses with a sound subsequent narratives with 25 patients with cancer, with 20 cancer
knowledge and understanding of the care needs of patients with nurses, and 6 key advocates. The samples’ size was decided based
cancer, their families, significant others, and friends. These needs on the concept of ‘‘saturation’’ or the point at which no new
need to be incorporated in a commonly structured concept of what information or themes are observed in the data. Patients were
constitutes (quality) nursing care. purposively selected from the patients’ ward list primarily based on
their ability and their willingness to participate. Furthermore,
certain selection criteria were set: Participants were adult patients
BRIEF DESCRIPTION OF THE CYPRUS (ranged in age from 21 to 68 y) with cancer (intestine, prostate,
HEALTHCARE CONTEXT lung, liver, breast, stomach) of both sexes and whose health had
Cyprus has a mixed healthcare system, where the public required hospitalized treatment (ie, chemotherapy sessions, surgery
maintains a high level of awareness about choice. Those who for relieving symptoms). Patients who required treatment in
choose to pay privately for their treatment are becoming more protective isolation were excluded from the study so that their
aware of the value and quality of service they receive for their health was not endangered in any way. Furthermore, newly
money. Public hospitals in Cyprus present major differences diagnosed and terminally ill patients were excluded from the
in relation to the private. Public hospitals are responsible for sample due to high levels of psychologic distress that the patients
providing primary, secondary, and tertiary care, whereas the and their families were experiencing. Eligible nurse informants
private ones are confined to providing second level care, and in were from both sexes and all levels of nursing staff with at least
some cases, types of preventive care (ie, diagnostic medicine). The 1-year experience in cancer care departments. Finally, the patients’
public hospitals are struggling to meet the challenge of increasing advocates were members of management committees and policy
demand for healthcare without an increase of resources. The makers of the cancer associations with wide experience in issues
private hospitals’ operation is contingent on market incentives. related to policy making and managing regarding cancer nursing
Because private hospitals are not subsidized and depend on income and palliative care.
from clients, it can be argued that they are more inclined than
public hospitals to provide quality services and to be concerned Data Collection
about client satisfaction. By doing so, they are not only able to The data collection process included narratives and focus
build satisfied and loyal clients who revisit the same facility for groups. The data were collected in a sequential order commencing



with the narratives with patients having cancer and followed by the with various accessibility and availability issues when they need
focus groups with the patients. The collected data were analyzed to hospitalized care. A female patient, 45, commented:
form probes for the focus group with the key advocates. After the
analysis from the key advocates, the narratives with the nurses were It is not enough that we have cancer; the ministry does nothing to
performed. improve the conditions under which we are admitted to hospitals
The narratives and focus groups took place at the for treatment or even the hospitals that do actually offer this kind
participating hospitals. Private rooms were used for the patients of care.
and the advocates. Data from the nurses were collected in the
On the same subtheme, a male patient, 65 expresses his
wards’ meeting room. These rooms were selected based on the
concerns of having to travel everyday to get treated:
provision of privacy and quietness during the collection of the data.
The informants were encouraged to share their experiences in I have reached my limits y I do not ask much, just some respect on
relation to the provision and receipt of nursing care respectively. what we are going through y if cancer does not kills us then these
They were invited with an initial question ‘‘what have your stressful conditions will.
experiences in relation to nursing care been like?’’ The duration of
the narratives varied, were tape-recorded and transcribed verbatim Being Valuable When Receiving Nursing Care
by the researchers. Through the narratives the informants have expressed the
need for ‘‘being valuable’’ when being cared for by a nurse. The
Ethical Considerations need to care for the patient in a certain way that will promote his/
Anonymity and confidentiality were guaranteed in the her sense of ‘‘being valuable’’ was equally raised as a theme by
reporting of all results and informants were assured that the raw patients and nurses. Patients feel that having cancer is a horrible
data would not be shared with anyone except the researcher. The experience, which impacts all aspects of their lives. When
informants reserved the right to withdraw their consent to hospitalized they expect the nurse to be understanding and
participate at any time without repercussions. The study was supportive in their cancer journey. A female advocate, 48,
reviewed and approved by the Middlesex University-Health Studies commented:
Ethics Sub-Committee and the Cyprus Ministry of Health.
We expect no special treatment for the patients from the nurses,
just those necessary things that can make us feel a bit better, that
DATA ANALYSIS we are still being valued (y)
The interpretation of the text consists of dialectical move-
ments between understanding the text as a whole and explaining The nurses in the narratives expressed the belief that the
the individual parts of the text, between an approach that brings patients with cancer are often cared for based on structured nursing
the text close to the interpreter and an approach that distances the plans and not based on their individual needs and concerns. Nurses
interpreter from the text and between what the text is saying and assert that the way nursing is practice in Cyprus is not promoting
the understanding opened up by the text. Gradually, a compre- individualized care. Nurses also commented on the fact that due to
hensive understanding of what the text points to is achieved. the lack of specialty (or additional training in relation to cancer
Interpretation is based on the principles of the Hermeneutic Circle, care) they often find themselves in difficult situations, especially
Ricoeur notes the way interpretation moves forward from naive when newly diagnosed patients or young patients suffering from
understanding, where the interpreter has a superficial grasp of the cancer are involved. A female staff nurse, 34, asserted the
whole of the text, to deeper understanding, where the interpreter following:
understands the parts of the text in relation to the whole and the
whole of the text in relation to its parts (the hermeneutic circle). I am not always fair to my patients. Not having the necessary
The interpretation process takes its point of departure in Ricoeur’s specialized training in relation to cancer care, makes me feel unable
theory of interpretation and proceeds through 3 phases.14 The first to cope in certain difficult situations. Talking about death and
phase is the naive reading/interpretation which is a preliminary dying is not something that I feel comfortable doing, but I think
interpretation of the whole followed by the structural analysis. In the with the necessary training I could have been much better in
structural analysis, the second phase of the interpretation consisted dealing with these situations.
of dividing the text into meaning units, that is, sentences, part of
sentences, or paragraphs with related meaning content. In the final Being Valuable When Political Decisions are Taken
phase the text is again read as a whole, the naive understanding and The patients and their advocates felt helpless in relation to
the themes are reflected on in relation to the literature and a critical the political decisions been made from the ministry of health.
comprehensive understanding is formulated.18,19 Their needs and concerns seem ‘‘invisible’’ to the policy makers and
the politicians. It seems that regardless of the concept being
predominately a nursing concept, the informants held a more
FINDINGS general idea of the concept of quality, which includes adminis-
Six main themes emerged: (a) being cared for religiously (b) trative issues such as access and availability of resources and
being cared for spiritually (c) being valuable, (d) being respected (e) services.
being cared for by communicative and supportive nurses, (f) being
confirmed, and (g) being belonged. The findings emphasized the (y) we have to wait for hours and sometimes even days just to get
influence of the cultural context on the conceptualization of these a bed to be treated? That most of us have to travel away from our
themes. Therefore, cultural characteristics (ethnohistory) hold a central cities to get treated?
place on the formulation of the informants’ perception in relation to
cancer nursing care. The themes and subthemes are presented in the
text below. Brief citations are used to illuminate the results. BEING RESPECTED
Being Respected When Receiving Information
BEING VALUABLE Although the informants related the provision of quality
nursing care with adequate informing of the patient on his/her
Being Valuable When Accessing the Cancer Care health-related issues they asserted that generally they were deprived
Services of such information during their hospitalization. The informants
One understanding of the meaning of quality nursing care, claimed that nurses’ attitudes are driven by certain negative
as disclosed through the narratives, is that quality nursing care is assumptions and beliefs about giving information to patients. In
related to being valuable when accessing the healthcare facilities. clinical practice they tend to avoid providing them with the
Most of the informants expressed the fact that they often come up information they need based on the belief that patients are not



interested or able to understand disease related information. A Being Supportive
female patient, 21, commented that: The lack of communication with the nurses was negatively
reported by the patients and their advocates. They moved on to
Some members of the staff do not take you into their confidence
assert that without establishing a ‘‘healthy’’ communication with the
and hardly give you any meaningful information (y).
nurses, the nurse becomes unable to emotionally support the patient.
On the same subtheme, a female patient, 58, asserted that: Quality nursing care is about getting the support at every
stage of the disease. The cancer journey is a life-time experience and
The nurses need to understand that I do not know everything about the emotional support from the nurses is something we count on to
my illness (y) I was diagnosed in November and I am worried on cope with the disease (female patient, 29).
what might happen to me (y) the nurses need to have patience and
inform me based on what I need to know. Being Confirmed
Being in Competent Hands
Being Respected When Health-related Decisions Being in good hands when the diagnosis is informed to the
are Being Made patient as well as in the following weeks or months in the hands of
An issue which the informants identified in the narratives accommodating and caring nurses was important. The following
and which was seen as a barrier to the promotion of shared reflection appeared during a narrative with a male patient, 48:
decision-making in clinical practice, derived from the cultural
background of the Greek-Cypriots. Informants referred to the Being emotionally supported is not always enough when being
beliefs and values that people hold in relation to health cared for. It is always reassuring to know that the nurse knows
professionals and especially physicians and nurses. ‘‘The icon of what he/she is doing about the care.
the healthcare professionals as Gods.’’ Nurses are perceived by the On the same topic, the nurses seem to agree on the views
people as being something like ‘‘Gods’’, and the professionals expressed by the patients and advocates:
themselves have an attitude which somewhat matches patients’
beliefs. On the basis of these beliefs, it is therefore acceptable for It is an important issue whether the nurse is competent and skilful
nurses to assume the control of the patients’ care, without him/her to cope with the problems faced by the patient and his/her family.
being an active informant in the whole process and without his/her A competent nurse instigates a sense of safety to the patient and
desires really been raised or being addressed. The majority of the his/her family which alleviates their concerns in a way.
patients and advocates agreed in what has been expressed by a male
patient, 46: Being in Uncertain Hands
Making decisions in relation to my care is not an issue, at least in Not all caring experiences were described as good by the
my case. It is not whether to decide or not on something, but it is patients and their advocates. Lack of care, as well as respect, was at
more about how to comply with decisions taken by the nurses and some cases demonstrated by the nurses, causing feelings of
other health professionals. uncertainty to the patient. The patients acknowledged that in these
situations when the nurse behaved in this manner, ‘‘a relationship
The response by a male patient, 44, who said that ‘‘If I had of trust’’ could not be evolved. A female patient, 21, commented
more information I would be able to be involved in the decision- that the nurses ‘‘(y) failed to feel about me y’’. On the same
making process, and feel that what I think is respected by those topic, a female ward manager commented that
taking the decisions’’ summarizes their willingness to participate The patient wants to see a nurse who has a real interest in
and the need for more information to enable them to do so. him/her, the mechanistic, standardized way is by far outdated.

BEING CARED FOR BY COMMUNICATIVE BEING CARED FOR RELIGIOUSLY AND SPIRITUALLY
AND SUPPORTIVE NURSES This theme was comprised by 2 subthemes based on the
narratives of the informants. Nurses recognized the importance of
Being Communicative caring for their patients with cancer in a way that their spiritual and
The patients referring to their communication with their religious needs were acknowledged and addressed within the
nurses expressed the belief that it holds a central place in the way nursing care plan. These 2 aspects of the care were found to have
they experience illness, death, dying, and the quality of the nursing a great impact on the patients and their family mainly due to their
care valuing therefore a therapeutic form of communication. cultural influences.
Communication is inherent in the Greek-Cypriot culture as an
important mean that has the potential to positively or negatively Being Cared for Spiritually
influence their experiences. Therefore, they constantly seek to
Spirituality is about the inner life or spirit of each of us as it
establish good communication with their carers whether these are
relates to the unseen world of Spirit or of God. It’s the name we
nurses or other healthcare professionals. A female patient, 31,
give to the dimension of seeing and living that goes far beyond the
commented:
material world to deeper truths and eternal values. Such a view of
It’s not possible for me to think of quality nursing care outside the spiritual care shows according to the researchers that it is not
context of communication. Being cared for outside this context is enough for nurses to support their patients’ religious needs but they
like being treated by mute nurses. should also seek ways to also support them spiritually.
A female patient, 68, narrated the following:
A male patient who was also recently diagnosed, aged 66,
Praying, reading the Holy Bible took my mind off the constant
asserted that
thought of death (y) through the nurse’s caring I saw what the
It is so stressful having something wrong with your health and true meaning of life is (y)
know very little about it (y) I need reassurance and support and
the nurses can offer these through their knowledge and practice Being Cared for Religiously
Nurses who considered themselves as being religious
Or it could be that: persons and shared the religious persuasion of their patient were
more able to acknowledge the importance of this aspect of the care
Religion is something that defines us Cypriots nursing care can and act upon it. The patients and advocates referred to several
never be complete without it (female advocate, 47). religious rituals which they considered important for their care,



however they emphasized on being able to pray in private, confess, Religion can be understood as ‘‘a relationship between the
study the Holy Bible and other religious books and being able to human and the sacred, the supernatural, and an ultimate reality.’’14
receive the Holy Communion. A female patient, 68, asserted that: Different religions have different laws and rituals and have an
organizational component associated with them. The major world
I am sure now that it (religious care) gave me hope and optimism religions have been effective in attracting adherents in so far as they
for the future (y) I could not find any better words to describe have provided a framework and community in which believers can
quality nursing care than what the nurses did for me find answers to the great questions of existence: ‘‘What is the
On the same topic a female ward manager, 50, reflected on purpose of my existence’’, ‘‘Why am I here?’’, ‘‘Why is there
the following: suffering?’’, ‘‘What happens when I die?’’
Spirituality, on the other hand, represents ‘‘those values or
Yes I would say that I am a religious person, I mean I believe in beliefs that give a purpose and meaning to life and may relate to a
God, go to church every Sunday, fast when I have to, and take the transcendent dimension’’.20 This transcendent dimension may find
Holy Communion. I understand the patients that are religious expression in formal religious belief and practice but may also be
wanting to continue their duties while in hospital (y) experienced outside a traditional religious context. Spirituality is
considered to be a universal human characteristic in that all humans
are spiritual beings just as all humans have some form of health,
BEING BELONGED albeit good or bad.21 Hermann22 in a study which sought to discover
Being Supported by the Family the extent to which spiritual needs of patients are met at the end of
life, spirituality was defined as ‘‘the inherent quality of all humans
(Family Presence) that activates and drives the search for meaning and purpose in life.’’
A patient receiving quality nursing care means being with What do we mean when we refer to ‘‘ethical’’ or ‘‘morally
his/her family and receiving emotional support by them according good’’ decisions? Botes23 asserts that ethical phenomena and
to the informants’ narratives. problems are driven by an ethical decision-making process based
To me, quality nursing care is having my family with me during the on 2 fundamental axes, the ethics of justice and the ethics of care.
difficult times of my life (female patient, 58). On the basis of the ethics of justice, ethical decisions are made
on the basis of universal principles and rules, and in an impartial
The family presence is recognized by the informants as a and variable manner with a view to ensuring the fair and 1equi-
supportive mechanism used to deal with the experience of being table treatment of all people.18 In the latter axe, involvement,
cared for and having cancer. The family can offer the patient harmonious relations and the needs of others play an important
courage (tharos) and hope (elpida) to deal with the experience of part in ethical decision-making in each ethical situation.24
having cancer and its consequences. The theme ‘‘being respected’’ is related to ethic and ethical
decision-making whilst the themes ‘‘Being cared for religiously and
Being there for me (family) is the most important thing that gives spiritually’’ are connected to spiritual and religious care of the patient
me courage and hope for the more difficult times to come and when hospitalized. The latter theme even though is consisted of 2
overcoming these (female, 30). aspects of the care (spiritual and religious) is presented as one. Being
one theme does not imply that the 2 constituents are the same but
Being Cared for by the Family rather that it is necessary that the spiritual and religious needs of the
The informants recognized that the family involvement in patient need to be addressed together taking into consideration the
the care was materialized though addressing some of the patient’s religious background of the patient as well as the spiritual issues that
physical, informational, and decision-making needs. A female derive from it. ‘‘Being respected’’ is a theme that explicitly refers to the
patient, 44, comments on the importance of the family role in the way nurses provided information to their patients and their readiness
care: or reluctance to involve them in decision-making processes. The
I see the role of the family as complementary to that of the nurse theme can be extended to include issues of truth-telling and the ethical
for giving us quality nursing care’’ (F-44, PI-13). aspects of revealing the (whole) truth to the patient. The active role
that the patient should be engaged too, has been stressed by
Explicitly this care was focused on providing the patient Kuokkanen and Leino-Kilpi25 who assert that empowerment is an
help with some of his/her everyday living needs, an aspect of the individual process in which the person is interacting with the
care for which many of them had already assumed responsibility at environment pursuing impact on his/her life. The responsibility to
home. A male patient, 68, narrated that: invite patients to actively participate in decision-making in nursing lies
with the nurse. Patients’ experiences in relation to health issues should
I don’t see why my family cannot do some of the things, you know be valued as evidence contributing to the decision-making process
the little staff, they already do for me when I am at home. To be and, that partnership with healthcare professionals is important.26
honest sometimes I feel more comfortable having them caring for ‘‘Being cared for religiously and spiritually’’ seems to be an
me rather than having the nurses. important aspect of quality nursing care for the participants. Even
Informants reported that the family can work together with though participants seem unable to distinguish the difference
the nurses to help the patient with his/her physical needs such as between religious and spiritual care, both needs were reported as
taking their medication, walking about, and getting dressed. The important for the care. The relatedness of holistic care to religion
role of the family for providing information and supporting the and spirituality implied by the informants in my study has been
patient’s decision-making during the care, was also highlighted by highlighted by Papadopoulos27 who in an exploration of the
the informants. literature concluded that spirituality is an inherent and important
part of holistic care. Furthermore, she asserts that it is now evident
the realization that the spiritual dimension must be included to
DISCUSSION achieve the ‘‘whole’’ in holistic care.
The theme ‘‘being valuable’’ according to the interpretation
Ethics, Religious, Spiritual, and Other Aspects of has been related to the way patients are treated by the cancer care
the Care for Hospitalized Patients With Cancer services, the nurses and the state. Being valuable is not a suggestion
For one to be able to attain a ‘‘comprehensive under- but a prerequisite of the quality of the nursing care provided to the
standing’’ of the above findings it is important that these are patient. Feeling valuable is something that it is reflected on the way
discussed and interpreted in the light of the relevant literature. the care is provided to the patient, therefore, when there are no
Therefore, as part of this interpretation process it is important that beds available to get treated or the nurses demonstrate an uncaring
one should clarify the terminology of the concepts of ethics, behavior toward the patient and his/her family, the patient
religion and spirituality. experiences ‘‘unvalued.’’ Oermann28 in a qualitative study concluded



that patients defined the quality of healthcare in terms of access to the nursing care they receive and provide voice to patients
care confirming the fact that quality nursing care can also be pretending to the right of quality nursing cancer care.
viewed by the patients (and the advocates) as being related to issues The informants found it difficult to interpret this concept in
of availability and access to services. just 1 sentence. They rather provided extensive descriptions of what
Moving on to the next theme ‘‘being cared for by they perceived as quality nursing care and what this entitles. This
communicative and supportive nurses,’’ the importance of commu- evidence highlights the importance of language as a principle of
nication in cancer nursing care is demonstrated. Communication hermeneutic phenomenology. It also stresses the importance of
also stands as the tool for effective emotional support of the patient using simple language as close to the lived experiences as possible.
and the family. These findings coincide with those of Kruijver The findings coincide with the findings of earlier studies that
et al29 who asserted that ‘‘emphasis should be placed on the quality nursing care is a complex and ambiguous concept. Patient,
effective side, in which facilitating behaviors such as empathy, nurses, and advocates seem to agree with the attributes of quality
touch, comforting, and supporting are considered essential in of nursing care raised in this study. One way that nurses and
caring for patients with cancer’’ (p20). Jarrett and Payne30 found patients described quality nursing care was in terms of the qualities
that previous research studies came to the conclusion that the that the nurse needs to have, signifying that the nurse is an
quality and quantity of nurse-patient communication was brief and imperative part of quality nursing care.
superficial (p73). Furthermore, nurses seemed to ‘‘be controlling In everyday practice, cancer nurses come face to face with
and restricting the course and topics of conversation with patients’’ questions being raised by their patients such as ‘‘Am I dying?’’ and
(p77). This issue was also highlighted in this study, as the ‘‘Am I suffering from cancer?’’ Many nurses would answer this
participants commented that the nurses tend to use ‘‘communica- question intuitively, based on their experience of these types of
tion agendas’’ based on which they choose what and what not to conversations, or by reference to their own moral compass. However,
discuss with their patients and their families. it is important to be able to reflect more deeply on how decisions are
‘‘Being confirmed’’ represents the desire of the patients and made and the moral character of the individual involved. Truth-
the willingness of the nurses to be cared for by competent nurses telling and keeping the patient fully informed on his/her situation is a
and provides competent care respectively. At the same time the fundamental aspect of the care which will allow the empowerment of
patients and their families expressed the concerns and the feelings the patient threw the participation in decision-making.
of uncertainty that caring by unskilful or uncaring nurses might It is well recognized that the spiritual needs of people with
generate. On this topic Radwin (2000) in a qualitative study cancer demand our attention, but all to often people’s spiritual needs
proposed eight attributes of quality nursing care which emerged may not be addressed until the disease is in the advanced stages or it
from the data including professional knowledge. As the researcher may be overlooked entirely. However, spirituality and religion are
asserts in the analyses 2 aspects of professional knowledge were fundamental to the core of one’s being and thus have a critical and
identified: experiential knowledge and technical competence which rightful place in one’s understanding and managing of his/her illness.
referred to the importance of skills. Participants in this study In addition to being familiar with the general principles of a
similarly supported the perspective that quality of nursing care can particular religion, nurses also need to be aware that variations exist
be interpreted as being cared for by clinically competent and within each of the faith traditions. The individual beliefs of the
knowledgeable nurses. Being emotionally there and being cared for patients vary and therefore, nurses should care for their patients
by competent nurses contributed to the patients feeling safe when based on these. In doing this, nurses can and should view themselves
cared for as Mok and Chiu31 assert. Furthermore, the patients as a major link between the physical and spiritual worlds of their
appreciated the fact that the nurse was capable to show awareness patients to improve the quality of cancer nursing care.
of their expressed and unvoiced needs, being available and present,
and listened to patients’ deeper feeling and concerns. ACKNOWLEDGMENTS
‘‘Being belonged ’’ is a theme, which coincides with the belief The researcher thanks all the participating cancer care
that patients’ illness experiences cannot be understood as individua- departments and the Cyprus Ministry of Health. Further, he also
lized, socially isolated phenomena.32,33 Rather, as a serious illness such thanks the patients, the advocates, and the cancer nurses for their
as cancer carries with it considerable psychologic and social willingness to participate in this study and for their experiences that
consequences for the family, carers and other close associates of the they shared with him.
people with the disease (Thomas et al cited by Ref. 32). As cancer also References:
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possible to argue for or against an interpretation, to confront an 6. Normand C, Douglas HR, Castelnuovo E. Quality in nursing
interpretation to arbitrate between them and to seek agreement, care: context, complexity and the role of professions. NT
even if this agreement remains beyond our immediate reach.’’ Research. 2002;5:407–415.
Further to this argument comes the point of view of Allen and 7. Radwin L. Oncology patients perceptions of quality nursing
Jensen34 who assert that the hermeneutic circle ‘‘it is never closed or care. Research in Nursing and Health. 2000;23:179–190.
final’’. Therefore, it can never be possible to reach to a commonly 8. Larson PJ. Comparison of cancer patients’ and professional
accepted ‘‘conclusion’’ in this kind of study. nurses’ perceptions of important nurse caring behaviours.
The process has explicated the commonalities of the Heart Lung. 1987;16:187–193.
experience of patients with cancer being cared for and nurses 9. Von Essen L, Sjoden P-O. Patient and staff perceptions of
providing such care that have implications for a potential universal caring: review and replication. J Adv Nurs. 1991;16:1363–1374.
understanding of the phenomenon that bridges the perspectives of 10. Widmark-Petersson V, von Essen L, Sjoden P-O. Perceptions
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11. Wilkes L, White K, O’Riordan L. Empowerment through Abstract: Homecare in Cyprus is offered to cancer patients by 2
information: supporting rural families of oncology patients in nongovernmental organizations, The Pancyprian Association of
palliative care. Aust J Rural Health. 2000;8:41–46. Cancer Patients and Friends (PASYKAF) and the Anticancer
12. WHO. World Health Statistics 2008. Geneva: WHO; 2008. Society. Both function in a very similar way, offering free care to
13. Lindseth A, Norberg A. A phenomenological hermeneutical adults with a cancer diagnosis, regardless of their nationality or
method for researching lived experience. Scand J Caring Sci. their public health entitlements. PASYKAF is a registered charity,
2004;18:145–157. which was founded in 1986 by a group of cancer patients. One lady,
14. Nordam A, Sorlie V, Forde R. Integrity in the care of elderly in particular, who had received care abroad, saw how inadequate
people, as narrated by female physicians. Nurs Ethics. services in Cyprus were and realized that there was an obvious need
2003;4:388–403. for the provision of more than just chemotherapy and radio-
15. Ricoeur P. Interpretation theory: Discourse and the surplus of therapy. The urgency of the situation meant that no needs
meaning. Fort Worth, TX: Texas Christian University Press; 1976. assessment was carried out and no particular model was adopted.
16. Ricoeur P. Hermeneutics and the social sciences (J. Thompson, Initially, the services focused on psychologic support which was
Trans. Ed.). New York: Cambridge University Press; 1981. offered through group work and some individual home visits. As
17. Ricoeur P. Hermeneutics and the Human Sciences (Trans). far as symptom control and other services were concerned there
Paris: Cambridge University Press; 1998. was still a void. Those involved in the Association in its infancy had
18. Charalambous A, Papadopoulos R, Beadsmoore A. Listening the difficult task of dealing with basic but crucial problems such as
to the voices of patients with cancer their advocates and their the lack of readily available, appropriate analgesics and the fear
nurses: a hermeneutic-phenomenological study of quality and inexperience which surrounded the use of what was actually
nursing care. Eur J Oncol Nurs. 2008;12:436–442. available. As the needs became more evident, so the services
19. Charalambous A, Papadopoulos R, Beadsmoore A. Ricoeur’s expanded. There was no strategy or infrastructure as such and
hermeneutic phenomenology: an implication for nursing initially it was necessary to build bridges of trust between the
research. Scand J Caring Sci. 2008;22:637–642. oncologists and the Association’s members of staff. Endeavors
20. Woll ML, Hinshaw DB, Pawlik TM. Spirituality and Religion in were made to lay a solid foundation of good communication so
the Care of Surgical Oncology Patients with Life-Threatening or that the ensuing obstacles could be overcome as painlessly as
Advanced Illnesses. Ann Surgical Oncol. 2008;15:3048–3057. possible and so that the needs of the patients could begin to be met.
21. Guinn DE. The Heart of the Matter: Religion and Spirituality The homecare services tentatively began in the early ‘90s with 1
at the End of Life. Oxford University Press; 2006. nurse and expanded rapidly as needs arose. Today, PASYKAF has
22. Hermann CP. The degree to which spiritual needs of patients developed its services to include teams of healthcare professionals
near the end of life are met. Oncol Nurs Forum. 2007;34:70–78. who provide support to patients and their families at any stage of
23. Botes A. A comparison between the ethics of justice and the the disease. The staff, which totals 50, is divided into multi-
ethics of care. J Advance Nurs. 2000;32:1071–1075. disciplinary teams between the districts of Nicosia, Ammochostos,
24. Botes AC. Ethics of Justice and Ethics of Care. Johannesburg: Larnaca, Limassol, and Paphos, and consists of doctors, nurses,
Rand Afrikaans University; 1998. physiotherapists, psychologists, psychotherapists, social workers,
25. Kuokkanen L, Leino-Kilpi H. Power and empowerment in drivers, and administration. Extra support is also provided by
nursing: three theoretical approaches. J Advance Nurs. 2000;31: volunteers.
235–241.
26. Rycroft-Malone J, Seers K, Titchen A, et al. What counts as HOMECARE SERVICE
evidence in evidence-based practice? J Advance Nurs. 2004;47: The homecare service is supported by a full multidisciplin-
81–90. ary team located in each major town. Good communication is not
27. Papadopoulos I. Spirituality and holistic caring: an exploration only essential within the homecare team but it is also important
of the literature. Implicit Religion. 1999;2:101–107. when working with the extended team, especially the oncologist.
28. Oermann MH. Consumers’ descriptions of quality health care. The research project DITIS (http://www.ditis.ucy.ac.cy/publications/
J Nurs Care Qual. 1999;14:47–55. reports/McrosoftGrantMainReport.pdf) was developed to ensure im-
29. Kruijver IP, Kerkstra A, Bensing JM, et al. Nurse-patient mediate continuity of care from any location, including the patient’s
communication in cancer care: a review of the literature. home. In addition, the individual homecare teams within each town
Cancer Nurs. 2000;23:20–31. meet weekly to discuss new and difficult cases. The local
30. Jarrett N, Payne S. A selective review of the literature on nurse- administrator also attends this meeting so that the office staff is
patient communication: has the patient’s contribution been aware of any problems and can familiarize itself with new cases.
neglected? J Advance Nurs. 1995;22:72–78. Referrals within the team are often discussed and this is always a
31. Mok E, Chiu C. Nurse-patient relationships in palliative care. good opportunity for colleagues to support each other and to debrief.
J Advance Nurs. 2004;48:475–483.
32. Mcilfatrick S, Sullivan K, McKenna H. What about the carers: EDUCATION
exploring the experience of caregivers in a chemotherapy day When the homecare service began, it was evident that
hospital setting. Eur J Oncol Nurs. 2006;10:294–303. education was of paramount importance and, ever since, in-service
33. Mystakidou K, Parpa E, Tsilika E. Cancer information education has been a priority in all areas. Efforts have been made
disclosure in different cultural contexts. Support Care Cancer. to send staff abroad to gain experience in places such as St
2004;12:147–154. Christopher’s Hospice in the United Kingdom and also to further
34. Allen MN, Jensen L. Hermeneutical inquiry, meaning and their studies with diplomas and degrees within the field of palliative
scope. Western J Nurs Res. 1990;12:240–253. care and other related subjects.
35. Benner P. Interpretative phenomenology: embodiment, caring and
ethics in health and illness. London: Sage Publications; 1994.
36. Sowden AJ, Forbes C, Entwistle V, et al. Informing, NURSING SERVICE
communicating and sharing decisions with people who have Nurses often provide the first point of contact with the
cancer. Qual Health Care. 2000;10:193–196. patients and their families. It is during this meeting, whether in the
home, hospital or doctors office that an assessment is made and
involvement of the rest of the team is initiated wherever necessary.
Patient care plans are formulated with the patient and his family
The Homecare Model in Cyprus and the use of any necessary equipment, is offered. Patient and
Yolanda Kading, RN, and Barbara Pitsillides, MS. Homecare family needs are continuously evaluated and reassessed,1 with
nurses for The Pancyprian Association of Cancer Patients and symptoms looked at using the Edmonton Assessment Scale.2,3 The
Friends, Kolossi, The Republic of Cyprus. nursing service keeps up to date with journals and monthly



educational sessions are held at the nurses’ meetings. The EPEC-O patient’s and family’s trust is crucial to a successful outcome in
handbook has been used to assist in teaching, especially when terms of patient comfort and quality of life. Informed decisions are
training new team members.4 encouraged through education and open dialogue with the patient
Evidence-based care using Oncology Nursing Society and family, in an effort to maintain the patient’s identity and
Putting Evidence into Practice cards and The Royal Marsden autonomy. Culturally this is not always easy as patients in the
Manual for clinical procedures5 are practiced by the nurses who Middle East Cancer Consortium (MECC) countries hold their
also attend conferences and workshops, whether locally or abroad, health professionals in high esteem and some regard it as
to keep up to date. disrespectful to dispute or disagree with them. In fact there are
One of the difficulties encountered by nurses, on an island as those who would actually prefer that the professional make their
small as Cyprus, is the patient’s and family’s fear that, if the decisions for them.
services of the homecare nurses are required, then the patient must Nurses apply their training in total pain7 and symptom
be very ill. Previous experiences can often influence them to management to assist in their holistic approach toward an overall
associate the nurses with death, thus creating a barricade. It is assessment of patient and family needs and to ensure patient
sometimes only at a very late stage that a patient will accept any comfort wherever possible. The lack of an established district
help, which can lead to complications and unnecessary delays in nursing service in Cyprus has made it necessary for the homecare
symptom control and holistic care. nurses to fill this gap, thus a full scope of care exists, ranging from
A venopuncture service has been offered over the past 4 education, tending to basic needs and providing specialize care,
years in the Pancyprian Association of Cancer Patients and Friends through to bereavement visits.
(PASYKAF) offices and in people’s homes. This service has a
2-fold benefit allowing nurses to meet patients much earlier and End of Life Care
reducing the patient’s burden of traveling and unnecessary waiting When terminally ill patients wish to remain at home every
in hospitals. Patients are more likely to readily accept a referral to effort is made to respect their wishes using a holistic approach to
nursing staff for a clinical procedure such as blood analysis or an manage the physical, psychologic, social, and spiritual symptoms of
injection and this is the ideal opportunity to introduce the rest of both the patient and his family.
the team. Nurses are continuously faced with the ethical and cultural
issues, which are associated with Middle Eastern countries,
PREVENTION AND PROMOTION OF HEALTH especially when dealing with end of life care8: as the patient’s
advocate, how much information should a nurse give to the patient
As a nongovernmental organization, PASYKAF relies in situations where the family will not allow full disclosure?
mainly on public donations and has a responsibility to provide a Professionals must respect patient’s rights9 but must also consider
broad spectrum of support and education, which begins with the family’s wishes, knowing that access to the patient may be
matters concerning prevention, screening, and healthy lifestyle.
denied by the family at any time.
Informative leaflets are printed and distributed to the public by all
Medication is delivered via the oral route for as long as
staff, including the nurses and, as ambassadors of the Association;
possible. When this is no longer a viable option, a continuous
they are frequently invited to speak in public about their work and subcutaneous infusion is the preferred method of drug adminis-
to exercise their extended roles as educators. tration. As reported by Dickman et al,10 ‘‘the use of a continuous
subcutaneous infusion is often wrongly associated with imminent
Supportive Care death’’ and therefore the nurse must often rely on the, hopefully
Ideally, wherever possible, supportive care, and symptom already established, trust to encourage the patient and family to
control should commence as soon as the patient begins active allow use of this route of delivery for medication so that symptoms
treatment. Physical, emotional, social, and spiritual support is can be carefully controlled and fine adjustments can be made.
offered by the multidisciplinary team. Nursing care may include ‘‘Palliative sedation is the use of sedative medication to
venopuncture, injections, maintenance of Portacaths, and Hickman relieve intolerable, refractory symptoms by reducing consciousness
lines and care of any radiotherapy reactions. The patients are sufficiently enough to improve comfort in a patient with a terminal
followed through their course of treatment and, if they have illness.’’11 End of life sedation evokes ethical, legal, and moral
returned to a normal lifestyle once this is completed, they are put issues, constantly challenging healthcare professionals12 and often
‘‘on hold’’ with the knowledge that they can contact the team for leading to differing opinions between the family and professionals
support at any time. This ensures that patients are rotated and involved in the patient’s care, especially in the home.
quality care is maintained.6 There are many issues and controversies surrounding
hydration at end of life13 and nurses frequently have to deal with
Palliative Care the dilemma of whether it is correct to hydrate a patient. Education
The National Institute for Clinical Excellence defines of family and caregivers in the final stages of life is important. If the
palliative care as: family does not understand that decreased food and fluid intake
the active holistic care of patients with advanced progressive illness. seems to be a normal part of the ‘‘physiology’’ of dying,14 this can
Management of pain and other symptoms and provision of lead to a panic dash to hospital. Where necessary, minimal
psychologic, social, and spiritual support is paramount. The goal hydration is given via the subcutaneous route (hypodermoclysis),
of palliative care is achievement of the best quality of life for delivering approximately 1000 to 1500 mL in 24 hours. Intravenous
patients and their families. Many aspects of palliative care are also infusions are not supported by the homecare team due to the
applicable earlier in the course of the illness in conjunction with associated risks.
other treatments. (www.ncpc.org.uk/palliative_care.html) In MECC countries, the extended family is often made up of
many individuals who may have conflicting opinions. It is not
The care which is offered revolves around the management uncommon for the family to be concerned with what the neighbors
of a patient’s needs, whether it is at diagnosis or at end of life. Care may think if an intravenous infusion is not commenced or if the
is individualized and emphasis is placed upon each patient’s quality patient is not admitted to hospital, where every effort can be made
of life, whereas at the same time ensuring that the patient feels that to prolong his life at any cost. It can be very difficult to consider
he is in control of the plan of action. The care is also individualized such attitudes, prejudices, and beliefs while tactfully trying to
for each caregiver and family member. An important responsibility encourage all concerned to respect the patient’s wishes and rights.
is to give education in the practices of basic care in order for them
to feel safe and in control when caring for a patient at home. The Wound Care
focus of attention and the frequency of visits are flexible according Expert care of wounds is offered by the only nurse who has
to the patient’s and family’s changing needs and care plans are a diploma in tissue viability on the island. This diploma was funded
formulated together with the patient and the caregiver. Gaining the by PASYKAF, which also provides opportunities for her



attendance at conferences abroad, thus allowing her to stay abreast
with latest developments in wound care. She is often consulted
regarding complicated wounds and fungating lesions and is able to
give advice regarding the use of the most appropriate products.
Very few free wound care products are available from public
hospitals, but where necessary the Association will provide the
most effective solution for a wound, free of charge, on the advice of
the nursing staff. Although this can seem to be a costly undertaking
it often proves to be more economical in the long run and is
certainly much kinder to the patient.

Stoma Care
Patients with newly formed stomas face many difficulties,
which are compounded by the lack of nurses who are specialized in
this field of care. PASYKAF nurses make every effort to reduce
psychologic and physical problems, which patients encounter by
offering support and education regarding diet, skin care, and more offered. The above measures have helped to keep stress at an
practical issues concerning products and how to use them. acceptable level, as demonstrated by the recent implementation of a
Together with the psychologist, they aim to help the patient 6-monthly rolling administrative burnout inventory16 among the
overcome the impact on his body image and to return to normal nurses. There are also plans to implement a clinical burnout tool at
activities of daily living as soon as possible. a later date.
Participants, who were unaware of the subheadings under
which various situations were divided, were requested to score
PHYSIOTHERAPY between 1 and 9 (1 being rarely and 9 being constantly) indicating
how often each situation bothered them at work. Scores did not
Lymphedema Service exceed 3.5 and the total scoring showed low risk of burnout, a level at
Lymphedema and Breast Clinics are staffed by physiothera- which it is advised that preventive measures be taken.
pists, who are specialized in manual lymph drainage and the
treatment of lymphedema. They support preoperative and post-
operative mastectomy patients, with education and massage— SOCIAL SUPPORT
patients are taught how to exercise and care for their affected limbs The social worker offers help with the difficult task of
to reduce the risk of lymphedema but, where necessary, daily applying for social service benefits and any home help which the
massage and bandaging is provided to reduce the edema so that a patient may be eligible for, a process which can be complicated and
sleeve can then be measured and fitted.15 exhausting for the patient and their families. One of the social
worker’s roles is to assist in speeding up this process, especially
Supportive Physiotherapy where time is of essence and where these benefits may be
Homecare is offered by the physiotherapists upon a medical desperately needed to improve quality at end of life. The necessity
referral. They educate families and work with them to encourage for extra help to cover basic needs is often deemed to be urgent due
both active and passive exercises, chest physiotherapy, and the safe to the fact that a 24-hour service is not available and can be the
use of equipment such as frames, bath chairs, and hoists. pivotal contributing factor which determines whether a patient is
actually able to spend his last days at home.

PSYCHOLOGIC SUPPORT
DAY CARE
Psychologic support is provided to patients and their
families, by psychologists and psychotherapists, who work with The day care centers are run by the social workers who
the patient and family, either individually or as a family unit, in the organize a variety of activities and outings for their attending
home setting, hospital/hospice, and in the Association’s offices. members. They offer mainly social and respite care but also some
They also work with a variety of groups. Cultural prejudices are rehabilitation which is provided by a physiotherapist who runs
regular basic exercise classes.
such that patients may refuse to meet with a psychologist, fearing
Sharing breakfast together is often the highlight of the
loss of control and what others may think. Although this attitude
is slowly changing, it is not uncommon to hear a patient ask ‘‘do morning, especially for the more isolated patients. Others look
you think I’m crazy?’’ when being offered psychologic support. In forward to craft and musical sessions and the talks given by invited
these situations, where it is believed that a patient may benefit from guests, as well as trips away to various parts of the island and
such support, the team members will educate and do their own occasionally abroad.
Where necessary, nurses are on hand to offer support and
counseling to encourage the acceptance of the psychologist.
advice to members of the day centers and will escort them on their
Patients and family may agree to receive this support only in the
overnight trips, whether locally or abroad.
PASYKAF offices or while in hospital receiving chemotherapy.
Whatever the situation, however, the patient’s wishes are of vital
importance to all the members of the team. VOLUNTEERS
Volunteers play an important role in the Association.
DEBRIEFING Paphos, in particular has a group of counselors who train other
volunteers in respite and support care. They offer companionship,
PASYKAF began by providing primarily psychologic shopping, help with doctor visits and will sit with the patient to
support and today it continues to focus on this, not only for
enable family members to have a break and some time away from
patients and their families, but also for its staff. The Association
home. A further counseling course for volunteers will commence,
recognizes the importance of its staff’s well being and has made island wide, in January 2010 and it is hoped that it will begin
efforts to create a caring environment in which to work. Monthly making use of their services to their full potential.
debriefing sessions are held, for all members of staff, by psy-
chologists from other towns, and weekly multidisciplinary meetings
take place within each town. Members of staff are encouraged to EQUIPMENT ON LOAN
support each other and to have daily informal debriefing sessions. PASYKAF has amassed a collection of good quality
Nurses are able to take an extra day off each month to compensate equipment which is loaned to its patients, either by the nurses or
for their on-call hours and generous sick/compassionate leave is the physiotherapists. Patients and family are educated in safe



handling and use of free equipment, ranging from basic items such
as walking frames and commodes etc, to pressure relieving
mattresses, electric beds, hoists, and oxygen concentrators, ensur-
ing that patients and caregivers can be cared for as comfortably
and safely as possible while reducing the risks of possible
complications. This service is much appreciated, even more so
because it is not possible to rent such items on the island.

BUS SERVICE
A bus service provides daily transport to and from patients’
homes, taking them to the day centers and to the main oncology
units, which can sometimes be located as far as 150 km away.
Drivers also transport medication and other communication. This
is delivered to the PASYKAF offices in each town from where it
can be collected or delivered to the patients’ homes by other
members of staff. During the, often, long journeys patients grow to
trust and rely on the driver, thus extending his role to one of a
supportive confidante.

RESEARCH
PASYKAF’s involvement with the research program patients to spend more time at home than in hospital, especially at
DITIS, an ehealth telehomecare project has been very successful. end of life. Evening on call, as a pilot program, commenced in
DITIS was a finalist at the 2003 eHealth Ministerial Conference April 2009 and will run for 2 months to assess demand, cost, and
and seventh at the World Summit Award competition. It received a burden on current staff.
Cambridge Microsoft Research Labs grant and has publications in Many patients live far away from their oncology center and,
journals and conferences, as well as book chapters. Currently, with no current GP system in place, it is necessary to take action
DITIS is used island wide by all homecare staff, enabling all of the that will alleviate some of the associated problems. Many of these
offices to become paperless. The program allows continuity of care difficulties could be overcome if each nurse were to carry a selection
anywhere and anytime with a virtual team sharing the medical of first-line medication. Therefore, the possibility of a nurse’s
record. These records will be used for audit evaluation, lobbying emergency drug box is currently being considered.
for research funding, education, planning, and development of E-telemedicine wound care is also a project under discus-
services.17 sion. This would enable the tissue viability nurse to assess wounds
via computer and to give the appropriate advice. All nurses will use
a wound care plan and be able to discuss the management of
CONTINUING EDUCATION wounds from afar.
The Association encourages continuing education by A rolling audit and evaluation of its services is about to
members of staff and hosts experts from overseas, offering seminars commence this year with the new database, PASYKAF Patient
and conferences and over the past 15 years has provided funding Management System. This will allow the Association to assess,
for postgraduate studies, thus helping to elevate standards of care audit, evaluate, and continually improve its service as well as lobby
and practice. for funds from the government. Evaluation from families who have
Last year, a rolling communication workshop for all staff, lost a loved one will not only help recognition of the gaps in the
health professionals, and administration, was commenced and is service but will also help acknowledge the good work that is done
now held every 3 months to help improve staff communication by the team.
within the organization and with our clients.
A Casley Smith Method of Lymphedema Treatment [Manual CONCLUSIONS
Lymph Drainage update will be taken by the physiotherapists in 2009
A palliative care need assessment pilot survey was under-
(http://casley-smith-lymphedema-courses.org/index.html)]. taken in January 2009 in Cyprus (86 completed questionnaires were
Some nurses are considering the Princess Alice Hospice returned by health professionals from all disciplines) and the
Certificate in essential palliative care, which was held last year by respondents were all very much in favor of further developing
the Anticancer society and others will be commencing a 2-year homecare for Cyprus (www.worldatlas.com/webimage/countrys/
diploma in palliative care which is due to start in September 2009. europe/cy.htm).18
The above needs assessment indicated that 82% of the
DEVELOPMENT respondents believed their patients would prefer to die at home.
The only way to offer a 24-hour service, when there is such a
Psychosocial nursing shortage, is to combine the 2 nongovernmental organiza-
Plans are underway for the commencement of a bereave- tions. This would enable a staggered nursing shift system and the
ment group. During bereavement our psychologists currently work ability to have senior and junior nurses in each town. It would not
only with families considered ‘‘at risk,’’ but it has been noted that only be more cost effective due to reduced administration costs, but
there is an incidence of bereaved people seeking help as many as would also dissipate the constant competition and conflict that
some years later. This may be because they have been missed and arise between the 2 organizations. Unfortunately, the biggest losers
not earmarked as ‘‘at risk’’ in the early stages of bereavement. It are the patients and their families who are often caught up in the
has therefore been decided to commence a pilot program in middle of this conflict. Which organization should they choose?
Larnaca for bereavement groups, which will be run by specially Who will give them the best care? Why can they not receive help
trained social workers from outside of the homecare team. It will from both? Would they offend should they change their minds and
commence as an open group, which can be attended after an initial decide to ‘‘go over to the other side’’?
assessment and, if successful, will become an island-wide venture. At a time when a patient must concentrate his energy on
healing himself he should not be placed in such dilemmas. We must
Nursing ask the question—is there a need for 2 organizations which offer
In its efforts to improve, PASYKAF plans to increase its very similar services on an island where the population is expected
hours of service with the eventual goal of providing a 24-hour to total 793,000 by mid 2009? (www.worldatlas.com/webimage/
cover, a move which would go a long way in assisting many more countrys/europe/cy.htm). We need to look at how many of the



patients who die in hospital would have preferred to die at home 14. Esper P, Kuebler K. Palliative Practices From A-Z for the
and the reasons which prevented them from doing so. This will be Bedside Clinician. Oncology Nursing Society Publishing Divi-
undertaken in 2009 as part of our homecare evaluation. sion; 2008:22.
If both the Anticancer Society and PASYKAF are 15. Poage E, et al. Demystifying Lymphoedema: Development of
passionate about the patient’s best interests and are driven by the Lymphoedema putting into practice card. Clin J Oncol
their vision to seriously offer the best quality care, we have no other Nurs. 2008;12:6.
option but to combine expertise, experience, enthusiasm, resources 16. Potter BA. Overcoming Job Burnout: How to Renew
and to have a united mission. Enthusiasm For Work. 1998, http://www.docpotter.com/
test_bo_potential.html.
17. Pitsillides A, Pitsillides B. A virtual multidisciplinary team for
To Offer Quality Care to Patients With Cancer terminal care. Eur J Palliative Care. 2004;11:202.
Shared visions19 will ensure that services improve and will 18. Ptisillides B, Pantekhi S. Need assessment for Palliative care in
relieve patients of any dilemmas they may face when trying to Cyprus, a pilot study, 2009 unpublished.
decide who to approach for help. 19. Kouzes J, Posner B. The Leadership Challenge. 3rd ed. San
All patients and their families require a revolving door Francisco, CA: Jossey-Bass; 2003.
policy between hospital, hospice, and home. This is more likely to
be realized if both of the organizations present a unified front to
work with the government to reach a goal of excellence. Fear, Frustration, and Loss: How We Can Ease the Burden
The model of care which has been adopted by PASYKAF
Rachel Christou, RGN. Homecare Nursing Service, The Cyprus
and the Anticancer Society has developed over the years according
Association of Cancer Patients Friends, Paphos, Cyprus.
to the needs of a multicultural population. Continuously faced with
ethical, practical, political, and financial dilemmas, both organiza- Fear, frustration, and loss have many causes and it is our
tions strive to improve and adapt. A more progressive model of a responsibility as healthcare professionals to be able to recognize
and support patients and carers through the journey of their illness
24-hour care, catering to all of patients’ needs, now has to be
and beyond.
implemented, with well-defined policies and procedures, which can
The medical profession may not always be able to ‘‘cure’’ but we
be developed by a new single organization born of PASYKAF and
can always be instrumental in allowing a person to ‘‘heal’’ and find
Anticancer, in liaison with the oncology centers.
inner peace.
The earliest possible introduction to a patient, right from diagnosis
ACKNOWLEDGMENTS is essential in letting people know that there will always be someone
The authors thank Professor Michael Silbermann, Executive there for them, a ‘‘friendly professional’’ who is impartial allows
Director of the Middle East Cancer Consortium (MECC), for his them to be themselves and receive the appropriate amount of
unwavering support and encouragement in promoting continuing support needed at whatever stage of their illness.
education. His clear vision for excellent standards of evidence-based Unfortunately, we must sometimes cross many barriers in the
care is inspiring and has united health professionals in the Middle beginning, as many patients will not reach us until well after
East to work toward achieving this goal. surgery or may indeed have already commenced intense treatment
They also thank the Oncology Nursing Society (ONS) for regimens. They have to deal with chaotic consulting rooms, busy
their empowering leadership course, which has helped oncology nurses oncologists, lack of privacy, and time to discuss their diagnosis/
all over the world to become more proactive and to make a difference. prognosis even, sometimes with 3 doctors sharing a single office.
References: The patients are left to feel that this is not the time or what they
1. Doyle D, Hanks G, Macdonald N. Oxford Textbook of were going to ask is maybe not ‘‘so’’ important as the doctor has to
Palliative Medicine. Oxford; 1999:642. deal with so many people. Therefore, many are left to deal with
2. Bruera E, Kuehn N, Miller MJ, et al. The Edmonton their cancer diagnosis by themselves, particularly within the general
Symptom Assessment System (ESAS): a simple method for the wards of the Government Hospitals, often postoperatively dealing
assessment of palliative care patients. J Palliative Care. 1991; with an altered body image, fear of the treatment to come with little
7:6–9. or no explanations or education given whatsoever.
3. Baba K, Fransson P, Lindh J. Use of a modified ESAS in However with the input of the nongovernmental organizations and
cancer patients: a pilot study of patient and staff experiences. close liaison with the surgeons, patients are able to receive a
Int J Palliative Nurs. 2007;13:610. comprehensive package of supportive care, from homecare nursing,
4. Emanuel LL, Ferris FD, von Gunten CF, et al. EPEC-O psychosocial support including one to one sessions and group
Education in Palliative and End of life care-oncology, the activities. Right from diagnosis onwards I believe should take on
EPEC project, 2005. the linear process, parallel with palliative care, which is present
5. Oncology Nursing Society; Putting Evidence into Practice throughout the course of disease.
(PEP Cards). When patients have spent maybe 6 to 9 months under initial cancer
6. A Berger MSN, MD Handbook of Supportive Care in treatment, many suddenly find themselves ‘‘lost,’’ that they have
Oncology; COAB 2005. been ‘‘let go’’ by their treatment center, even though they will have
7. Twycross R. Pain Relief in Advanced Cancer. Churchill a follow-up appointment, investigations to undergo, they have
Livingston; 1994:[Chat. 2]. spent recent months completely consumed by their treatment and
8. Randall F, Downie RS. Palliative Care Ethics. Oxford Medical dealing with the side effects. So now what? They are not traveling
Publications; 1996:109–136. on a daily or weekly basis with the same group of people who have
9. Kessler D. The Rights of the Dying Patient. Vermillion; 1997. come to know one another, with a sense of camaraderie. They
10. Dickman A, Schneider J, Varga J. The Syringe Driver. Oxford develop relationships of mutual trust and understanding, a
University Press; 2005. relationship which has no barriers; cultural, language, age, or sex.
11. Levy MH, Cohen SD. Sedation for the relief of refractory Carers and relatives experience immense feelings of anxiety and
symptoms in the imminently dying: a fine intentional line. loss in facing possible bereavement yet they must cope with the
Semin Oncol. 2005;32:237–246. present for time being and care for the sick person at home or in
12. Bruce SD, Hendrix CC, Gentry JH. Palliative Sedation in End- hospital/hospice. Although the patient feels the loss of life’s
of-Life Care. J Palliative Med. 2007;10:820–822. doi:10.1089/ responsibilities, fear of dependence, and becoming a burden on
jpm.2007.9943. the family, some will fear isolation and fear of being alone. This is
13. MacDonald N. Ethical Issues in Hydration and Nutrition; where the risk of poor communication and depression must be
International Association For Hospice and Palliative Care, recognized by the care team and aid in affectively keeping
http://www.hospicecare.com/Ethics/MacDoc.htm communication open between the two.



The patient may have important issues to deal with, which in the days of each other. We examine the coping mechanisms of the couple
short term may cause distress, but which may ultimately be healing. and the family and how the parents’ methods of coping affect the
‘‘The last part of life may have an importance out of all proportion children. The emotions experienced by the couple were different for
to its length.’’ (Sanders, 1993) each and included fear, denial, helplessness, and irritability. The
The multidisciplinary team can be extremely effective in dealing children expressed disbelief, guilt, and helplessness with guilt being the
with all the matters mentioned above and more. In particular, predominant emotion as a result of missing the signs of deterioration
taking into account the diversity of skills and experience a team has of mother’s health. This has been carried into the bereavement phase.
to offer. Likewise the issue of adjusting to a terminal diagnosis could not take
Effective communication skills, psychologic/emotional support, place in such a short time scale, so that assimilation of the diagnoses
and appropriate use of touch are all the things that nurses are has largely been made during bereavement. Undoubtedly, the family
taught in their initial training; however, it is through experience dynamics were altered in a dramatic and sudden way and it could be
that we are able to incorporate these skills almost by instinct into postulated that the psychologic effects may be more severe and long
our daily care procedures and time spent with our patients. It can lasting than when 1 parent dies before the other.
be amazing the issues which come to light and expressed by a
patient when for example, being bathed, having a wound dressed or
receiving lymphoedema therapy as ‘‘hands on’’ treatments invari-
ably makes the patient feel safe, in an unthreatening environment Treatment of Cancer Patients: Physical and Psychologic
(home, designated treatment room, nurses office) and makes for a Needs of Lymphedema Patients
trusting partnership. Eleni Peratopoulou, Cert. Physiother, and Tina Rossidou, BS, MS.
This is where the multidisciplinary team is so important, good The Cyprus Anti-Cancer Society, Nicosia, Cyprus.
communication between every member involved with that patient, Lymphedema is a swelling that develops as a result of an impaired
so the patient or relative feels understood by everyone involved in lymphatic system. This may be a result of the lymphatic system not
their care. developing properly (primary lymphedema) or as the result of
Whether it is in homecare, outpatient department, on a one to one damage or trauma (secondary lymphedema). It is a disfiguring and
basis or in day care groups, thereby establishing therapeutic sometimes painful complication of the treatment for cancer. It can
relationships where patients can feel free to express themselves, occur at any age and can affect any part of the body but is most
realize that they are not alone and that it is okay to receive help commonly seen in an arm or a leg and often results in some
from others even from nonprofessionals (mutual peer support) and impairment. In this instance, impairment is generally defined as the
probably most importantly allowing them to believe that they can loss of use or function of an anatomic structure (ie, arm or leg).
still offer support and help to fellow patients, therefore increasing Lymphedema can cause both physical and psychologic distress and
self confidence and sense of empowerment no matter how bad it is important that both aspects are addressed and treated
shape someone is in. (www.lymphoedema.org). Coupling the physical difficulties such as
Exploration of their own creativity in art or music therapy (not immobility and pain, lymphedema can cause various psychosocial
restricted to cancer patients) and Tai Chi through movement, issues such as psychologic distress, psychosexual problems, social
regaining control of ones own body, relaxation, and alleviation of anxiety, and social inhibitions.1
anxiety. Rehabilitation within a palliative care structure usually involves both
Finally, as a very important part of our team we simply cannot physiotherapy and psychologic counseling. Physiotherapy in palliative
exclude the volunteers, who are such an asset to our team. Trained, care aims to facilitate the patient’s ability to function with safety and
experienced, and dedicated people with a wealth of understanding independence so that an optimum level of functioning is achieved in
and sensitivity should devote their time to patients and their carers, the face of diminishing physical resources to achieve an improvement
where their ‘‘well-being’’ and ‘‘whole-being’’ is cared for in a calm, in the quality of life of the patient. Psychologic counseling aims to
secure, and friendly professional environment whether it is in help the patient by providing support, helping the patient set goals
complementary therapy such as Reiki, reflexology, aromatherapy, that are reachable as they seek to restore their physical limitations, as
massage, or part of a group as in, ‘‘saying goodbye’’ bereavement well as provide counseling when facing pain, distress, depression,
group (not restricted to cancer patients). hopelessness, despair, anticipatory grief, and anxiety.1
The Cancer, Loss and Grief group of volunteers who undergo A special physiotherapy treatment known as CPT (Complex
official training by experienced (voluntary) counselors preparing Physical Therapy) can assist lymphedema patients and typically
people to help others at home whether it is for company, sitting, involves 4 components and is in 2 phases.2
running errands, or transport. The components of CPT include:
Cancer Patient Support group in the city of Paphos, Cyprus (fund 1. Skin care and the treatment of any infection
raising, social interaction), knowing that their presence is supporting 2. A special form of massage
the charity which they may have received so much from in the past.
3. Compression bandaging
4. Special exercises which supplement the massage
Dying Together: Family Dynamics. A Case Presentation The phases of CPT are: Phase 1: reduction of the swelling (a 3 to
Ruth Marsh, RGN, and Lorna Morrish, MB, ChB, FFARCS. The 4 wk course of therapy), Phase 2: maintenance of the reduction.
Friends’ Hospice, Paphos, Cyprus. The psychologic needs of the cancer patient suffering from
There is much in the literature about spouses coping with terminal lymphedema must be assessed within the context of the individual
illness and the death of their partner. The psychologic effects are well patient and the level of rehabilitation intervention needed.
documented. We report a case of a couple each with a diagnosis of Psychologic factors may limit efforts made in physiotherapy and
terminal cancer who were admitted simultaneously to our hospice for the 2 disciplines must work together to facilitate maximum
terminal care and who died within 3 days of each other. The husband functional attainment of the patient. Various emotional states
had been diagnosed with inoperable bowel cancer 2 months before may be responsible for difficulty in attaining physical goals and
admission and had been cared for at home by the elder daughter, his individual psychological consultations will help to facilitate
wife, and her family. After a week’s stay with her younger daughter as adjustment, and help patients comply with their often difficult
respite for the elder, mother’s weight loss and increasing frailness were rehabilitative efforts. After a CPT course, the patient feels better
noted. She was diagnosed with inoperable gastroesophageal junction from the symptoms of swelling, the bursting sensation or aching of
carcinoma and was admitted to the hospice where her husband had the limb, the heaviness of it, and the feeling of pins and needles.
been for a few days. After treatment, there is an increase of the range of movement of
The issues raised by this case are those of how illness in 1 family the lymphedematous limb. Psychologic counseling helps to address
member can divert attention from another who is ailing and the depression, anxiety, sexual problems, and pain (www.lymphoedema.org,
effects on a family of losing both parents in a similar fashion within www.lymphedemapeople.com).1



The Cyprus Anti-Cancer Society provides both physical and What can be done to address these issues? First, acknowledgement
psychologic support to lymphedema patients by operating a that end of life care will formulate a significant percentage of a
lymphedema clinic in Nicosia. It is housed at ‘‘Arodaphnousa’’ junior doctor’s workload should be recognized. Formal, appro-
Palliative Care Center and patients are treated by the staff priately directed and carefully timed postgraduate teaching
physiotherapist and psychologist. Most of the patients treated in addressing the issues surrounding end of life must be incorporated
the clinic are women suffering from upper arm lymphedema due to into training posts and continually evolve to address a clinician’s
breast cancer and axillary lymph node removal, or after radiation needs as they adjust and develop according to the increasing
treatment or a combination of both. All lymphedema cases are exposure, experience and responsibility for decision-making within
referred to the clinic by the physician-oncologist treating the this area.1 Senior-led debriefing sessions and appropriate super-
patient. vision with members of the team after the death of a patient can
References: provide vital learning opportunities and a chance to discuss and
1. Tunkel R, Passik SD. Rehabilitation in Psycho-oncology. In: reflect on difficult management issues that arose.3 Addressing
Holland JC. NY: Oxford U Press; 1998:828-834. professionalism, self-awareness, and self-care4 may even begin to
2. Casley Smith Method Course Manual. redress some of the less helpful aspects of the medical culture that
have been linked to the distress and isolation experienced among
junior staff.
References:
The Psychologic Impacts of End of Life Care on Junior 1. Lofmark, et al. ‘‘Palliative care training: a survey of physicians
Doctors in Australia and Europe’’. J Palliative Care. 2006;22:105–110.
Angela Economakis, MBBS, BSc(Hons). St. Christopher’s Hospice 2. Ratanawongsa, Teherani, Hauer. ‘‘Third-year medical students’
and King’s College, London, UK. experiences with dying patients during the internal medicine
One would be hard-pressed to find a practicing doctor who did not clerkship: a qualitative study of the informal curriculum’’. Acad
remember the death of their first patient. If a positive experience, it Med. 2005;80:641–647.
can represent a source of reflection, a point at which certain 3. Jackson, et al. ‘‘It was haunting’’: physicians’ descriptions of
competencies were established, unknown skills discovered and a emotionally powerful patient deaths. Acad Med. 2005;80:
sense of achievement and understanding about managing the 648–656.
intricacies of end of life were successfully addressed. At worst, it 4. Kearney, Weininger, Vachon, et al. ‘‘Self-care of physicians
can be a focus of stress, anxiety and an involuntary immersion into caring for patients at the end of life: being connectedyA Key to
murky unknown waters of difficult symptom management, com- My Survival’’. JAMA. 2009;301:1155–1164.
plex psychosocial dynamics, existential and spiritual questioning
with ethical minefields, and all which may have to be navigated
around the sometimes complicated interpersonal family relation- The Attitudes of Persons in Close Relations With Those With
ships present in a multicultural setting. In the UK, postgraduate Cancer, Toward Those With Cancer and the Patients’
specialist palliative care training typically involves 4 years of a Perception
supervised, safe environment in which the necessary skills and tools ¨
Enil Af ¸saroglu*, Umut Di ¸sel, MDw, and Ozlem Gurkut, MD*.
˘ ¨
for managing this uniquely complex aspect of medicine are *TRNC Dr Burhan Nalbantog State Hospital Medical Oncology
˘lu
acquired. And yet, junior doctors equipped with little more than Clinic, Nicosia, Cyprus; and w Ba ¸skent University School of
hours to days1 of the bare bones of palliative care training are front- Medicine Adana Research and Practice Hospital, Medical Oncology
lining the management of such patients and expected to deal with the Department, Turkey.
lead up and fall-out of often dramatic and less than ideal deaths.
Countless surveys and studies looking at how medical students and
junior medics deal with and react to death and dying have
identified some perhaps obvious issues but also some other more INTRODUCTION
concerning findings. Feelings of stress and anxiety were common, Cancer is a disease that affects the functionality of family
which were often further compounded by the practical time dynamics. It not only affects the patients, but also the lifestyles and
pressures and workloads. Doubt over competency, fear of doing expectations of those in close relation with them. Especially in
harm and feelings of helplessness and inadequacy2 were found to collective societies, cancer patients state that, family members are
lead to consequent sense of low personal achievement and issues of the most helpful/supportive persons throughout their struggle
guilt.3 Feelings of distress, emotional exhaustion, depersonaliza- against the disease itself and the hardships and complicacies that
tion, and isolation were identified.3 Compromised patient care come along with the disease. For that very reason, it is considered
through avoidance and detachment for self-preservation2 was seen. that the attitudes of their close relatives/friends toward the patient
Decline in physical and psychologic wellbeing was associated with are significant in terms of the mental state of the patient and the
compassion fatigue and burnout.4 It has even been suggested that patient’s way of coping with the disease. In addition, the fact that
the first few deaths experienced by an individual could directly cancer is a chronic illness makes the attitude of family members
influence the specialty a junior doctor would follow. Practically, even more important.
time pressures, understaffing, on-call responsibilities, and fatigue The family members have to support the patient and
were often reasons trainee doctors were not able to engage in their provide him/her with the necessary care on one hand, and deal with
normal stress coping mechanisms4exercise, creative activities etc. their own existential concerns and issues. Cancer is a major trauma
Numerous studies over the last 20 years focus on the role of the for both the patient and the family. Discussing and talking about
‘‘informal curriculum’’2 which characterize the values, attitudes, cancer among the members of the family is important in terms of
beliefs, and behaviors that are learnt by or through the daily adopting to the inevitable changes that will come with the disease,
interaction with healthcare workers and the environment during showing the patient that he/she is not alone, and the patients’
medical training. It influences how a medic copes and reacts with reshaping his/her life and also, in terms of the life quality of the
difficult emotional situations. Role modeling2 emerges through the patient. The patient’s functionally reshaping his/her life minimizes
literature as pivotal if not the primary mode of teaching about the risk of him/her becoming passive as well as the mental disorders
end of life care. Problematically, Western medicine has created a that may arise due to cancer and the psychopathologies that may
culture of detached, casual, and objective attitude toward death, occur.
where displays of emotion such as crying may be ridiculed, treated
with derision or frowned upon as unprofessional. It seems there is a
discrepancy between the needs of young trainee doctors for AIM
explanation, process, and debriefing surrounding end of life and The aim of this study is to determine the behavior and
the guidance and supervisory role they seek from their seniors. attitudes of their close relatives toward cancer patients in North



Cyprus, which embodies a collective society and illustrating how INTRODUCTION
the patients perceive of the attitudes of those close to them. Islam is regarded as the youngest religion (having been in
existence for 1400 y), but at the same time, it has been characterized
METHOD by the most rapid rate of growth. There are about 1.2 to 1.7 billion
Muslims in the world.1 Muslims constitute 21% of the world’s
Although cancer patients and persons close to cancer
population, and the Muslim religion is considered second in terms
patients constitute the scope of this research, the sampling is
of the numbers of believers after Christianity (33% of the world’s
composed of 94 adult cancer patients and 64 persons who are in
population). The aim of this article is to help medical personnel to
close relations with a cancer patient, from various cities and
understand Islam and the medical ethics, which are based on
villages, all of whom are informed about the research and whose
Islamic principles. This will enable the staff to be more effective in
verbal consent is obtained. In collecting the data, a sociodemo-
every aspect of the provision of emotional and spiritual care of the
graphic data form and 6 questionnaires prepared by the researchers
Muslim patient in accordance with the values of his religion and
for patients and relatives separately were used.
faith.
Religion and faith, health and illness, life and death are
FINDINGS intermingled for most people. As a result, the need arises to get to
Around 32.25% of the patients said in a statement ‘‘In order know the patient before performing a comprehensive evaluation or
not to worry them, I struggle with my problems on my own, I cannot giving skilled treatment. The Muslim patient, his faith and his
share them with those who are close to me’’ is completely correct, values, vary according to the extent of his religiosity and the ethnic
31,18% of the patients said these statements ‘‘The whole order has background that he comes from in addition to cultural, economic,
changed in the house after I got sick, this disturbs me’’ and ‘‘Those and social factors. All ethical principles are important, but medical
close to me have undertaken all of my responsibilities, even those ethics are more important because of their role in the most intimate
that I can handle, so that I do not get tired, I feel useless’’ are and sensitive aspects of a person in his daily life and with regard to
completely correct. When the answers given by the patients are issues of life and death. This is the basis of the importance of
assessed in respect of their education level, a significant difference setting clear standards in patient care and their enforcement by
has not been observed. For the statement ‘‘Sometimes I want to cry, qualified parties arises.
I want to talk about my illness but I realise I am all alone’’ 22.5% of
the female patients chose the ‘‘completely correct’’ option, whereas
only 13.6% of male patients chose the same answer. In all, 36.6% of VALUES IN ISLAM
female patients said the statement ‘‘In order not to worry them, I There is no distinction in Islam between religion and
struggle with my problems on my own, I cannot share them with spirituality. Religious values and their foundations constitute
those who are close to me’’ is ‘‘completely correct’’, whereas only spirituality for the Muslim. Illness and suffering are part of life,
18.1% of the male participants chose it to be completely correct. and constitute a test of devotion to the creator. Muslim faith is
As for the persons who are close to patients, 47% said the guided by 6 principles (inner faith) as follows:
statement ‘‘Even if I am extremely feared or worried, I tried not to 1. Faith in One God: Allah is the creator of everything. He is
show it to him/her’’ is ‘‘completely correct’’. Around 20.3% of capable of everything and knows everything; Allah is a special
them said the statement ‘‘Whenever he/she wanted to talk about creation, unlike anything in the universe, without sex or a body.
his/her illness, I changed the subject’’, 23.43% of them said the 2. Faith in the Existence of Angels: They are invisible beings,
statement ‘‘I did not allow cancer to be talked about at home’’ and created from light, and serving God; spiritual creatures which
29.6% said the statement ‘‘I undertook all of his/her responsi- do not require food or sleep to survive, and each one has a
bilities. I started doing even those tasks he/she could do himself/ defined role.
herself so that he/she would not get tired’’ were ‘‘completely 3. Faith in Holy Scriptures: Muslims believe in all of the books
correct.’’ In the findings regarding persons close to patients, when given to the prior prophets including the scroll given to
‘‘sex’’ and ‘‘education level’’ were taken as variants, significant Abraham, the Song of David, the Torah received by Moses,
differences have not been observed. Only, for the statement ‘‘I the New Testament to Jesus, and of course the Koran given to
undertook all of his/her responsibilities. I started doing even those the Prophet Mohammed (pbuh).
tasks he/she could do himself/herself so that he/she would not get 4. Faith in Messengers and Prophets: Islam believes in all of the
tired’’, whereas 16.21% of female patient relatives chose ‘‘com- prophets (25 prophets are mentioned in the Koran) sent by God
pletely correct,’’ 48.1% of male relatives thought it was ‘‘com- to the various peoples beginning with Adam, Noah, Moses,
pletely correct.’’ Solomon, Jesus, and including the last of the prophets,
Mohammed (pbuh).
5. Faith in Fate: God knows the future of every person and what
DISCUSSION AND CONCLUSIONS will happen in his life even before he is born. ‘‘Every good thing
In this study it has been found that some attitudes and that happens to you is from God, and every bad thing that
beliefs of especially persons close to those with cancer are not happens to you is from yourself.’’ (Koran 4:79).
functional. Undertaking all of his/her tasks and responsibilities, 6. Faith in Judgment Day: Muslims believe in a judgment day on
even that he/she can handle, may not only harm their self- which all of the dead will be resurrected and the fate of
competence, it causes them to feel bad. It has been observed in this everyone—either heaven or hell—will be decided according to
study that there is a lack of sharing about the situation they are his deeds and his faith in God. That is why cremation is
among; both the patients and those close to them. In many studies, forbidden. Muslims do not believe in transmigration of souls
it has been emphasized that some of the major supports of the and the passing of the soul to another body.2
patient are relatives’ sharing some difficult decision about cancer,
not excluding the patient, being by the patient and showing him/her
that they perceive this as a family problem. It is believed that,
concerning psycho-oncology, in oncology services more psycho- PRINCIPLES OF RELIGIOUS LAW
education should be provided especially for those close to cancer 1. Need Supersedes Prohibition: For example, in the absence of
patients. other effective treatment for diabetes, it is permissible to inject
insulin derived from pigs, and it is permissible to administer
medicine containing alcohol if there is no substitute and it is
Medical Ethics and Spiritual Care to the Muslim Patient essential in curing the disease.
Kassim Baddarni, RN*, and Michael Silbermannw. *Al-Taj for 2. Refrain from Harm at Any Price: One should refrain from using
Health and Heritage, Arraba, Galilee, Israel; and w Middle East any substance that causes bodily or emotional harm, such as
Cancer Consortium, Haifa, Israel. smoking, and risk factors affecting human health.



3. Give Preference to That Which Causes Less Harm Between 2 prayer and at times of illness, and most importantly, they are the
Options: If there are 2 unavoidable causes of harm, the one last words spoken by a Muslim before his death: ‘‘For he whose
which causes less harm must be chosen. An example would be final words were ‘there is no God but Allah’ will enter heaven’’
allowing an abortion for a woman at physical or emotional risk [the prophet Mohammed (pbuh)].
rather than continuing the pregnancy. 2. Prayer (Salat): Prayer is the direct means of communication
4. Public Benefit Supersedes Personal Benefit: Despite the sanctity between the Muslim and his creator. The Muslim prays 5 times a
of the body in life and after death, it is permissible to donate day (morning, noon, afternoon, evening, and night), facing
organs to save human life (Muslim or otherwise). Because of the Mecca, Saudi Arabia, either on a clean rug or without a rug, and
multiplicity of Islamic sects, rulings on medical ethics can vary either alone or in a group, either in a mosque (where 40
and may even be contradictory on various subjects.3 congregants constitutes a quorum) or in any other clean place.
One should avoid the presence of urine or feces on the patient’s
clothing, which would negate purity and the possibility of
prayer. One should not pass by a person in prayer. Women will
SOURCES OF RELIGIOUS LAW prefer to pray with the door closed to men in the course of
In resolving any medical, social, economic or other issue, prayer. The patient can pray seated on a chair or lying in bed,
one attempts to find an answer from one of the following sources of but must still face Mecca. During prayer, talking or responding
religious law (fika in Arabic), ranked in order of trustworthiness: to questions is not allowed, and medical staff should be
1. The Koran: The holy book which is considered the source of the respectful of this and return a few minutes later.
written law, the most comprehensive and authoritative in 3. Fasting (Sawm): It is the obligation of every Muslim of sound
making a decision regarding religious, social, and other matters. mind who is over the age of puberty [for boys, sexual maturity
2. The Sunna: The oral law. Writings and behavior describing the (ahtalam)] and for girls, the beginning of monthly menstrual
way of life of the prophet Mohammed (pbuh) in various cycles (hidh), to refrain from food, drink, smoking or physical
circumstances. pleasures from dawn to dusk during the month of Ramadan (the
3. General Consensus: The general consensus of scholars and legal 9 mo in the Muslim calendar). The terminally ill patient and the
experts on contentious issues. mentally ill patient as well as women who are menstruating,
4. Analogy: comparing the subject to decisions on similar matters. pregnant, or nursing are exempt from the duty to fast. The
5. Wisdom: The personal understanding and wisdom of each patient feels impulses more strongly, especially if he is suffering
scholar. from an illness and is having difficulty fulfilling the duty to fast,
and he may fast against the advice of medical staff.1 If fasting
The Koran: serves as a source for the rules of life according to affects his health, the medical staff should speak to the patient
which the believer conducts himself, which establishes: and his family about the nature of the harm that may be caused.
1. Values: such as according respect to parents and neighbors, Diabetes patients suffering from hypoglycemia are permitted
protection of the weak and alms for the poor. to inject insulin, but administering a glucose injection for
2. Rules: such as establishing principles of marriage, divorce, hypoglycemia is deemed to end a patient’s fast.4 Blood can be
inheritance, and business. drawn for tests, but taking more than a cup of blood, such as is
3. Prohibitions: such as barring gambling, the consumption of pork done when donating blood is not allowed, inasmuch as
and alcohol and prostitution. this causes weakness and the potential for stopping the
4. Censure: such as condemnation of murder, theft, and lying and fast. Providing a semen sample for testing is deemed to end
disloyalty in marital life. a fast. Because of the incursion of sugar and salts during
dialysis, it has been decided that the procedure puts an end to
a fast, and it should be administered after fasting hours if
SYSTEM OF LAWS AND RELIGIOUS LAW possible. At the end of the month of Ramadan, Id al-Fitr is
celebrated.
The system of laws and religious law (sharia) consists of
4. Giving Alms (Zakat): The word means purification or disinfec-
5 major sections, which provide the basis for the Muslim’s way
tion.5 Islam was the first to make charitable giving a duty.
of life:
According to Islam, everything is the property of the creator and
must be shared with others. Every Muslim must contribute
2.5% of his annual profits to the poor.
TABLE 1. 5. Pilgrimage (Hajj): Every Muslim with the physical and
Arabic Do it Not do it financial means to do so has a duty to perform the hajj
pilgrimage at least once in his life.6 The ceremony includes a
Obligatory Fard Reward Punishment visit to the city of Medina [where the prophet Mohammed
Recommended Mustahab Reward No Punishment (pbuh) is buried] and to Mecca (the city where the Ka’ba is
Permitted Halal No Reward No Punishment located).6 According to the scholars, at the end of the Muslim
Discouraged Makruh No Punishment Reward hajj, one is purified of all of one’s sins, similar to a newborn
Forbidden Haraam Punishment No Reward baby.1 At the end of the pilgrimage, Muslims celebrate the Id al-
Adha (Festival of the Sacrifice). Three to 5 million Muslims a
The obligatory or recommended are the obligation or year from all over the world make the pilgrimage to Mecca every
encouragement (respectively) to perform acts; the forbidden or year.
discouraged are the obligation or encouragement (respectively) to
refrain from acts, and the permitted involves a choice to either
performing or refraining from an act.
RECOMMENDED UNDER SHARIA
OBLIGATORY UNDER SHARIA 1. Skin Banks: The use of human skin banks is permitted for
One of the main features of the duties imposed by Islam are medical reasons such as skin grafts, but is not allowed for
the 5 pillars, regarded as the central obligations of Islamic faith cosmetic use or to change one’s appearance or as a means of
(outward signs of faith). The details of the duties of the 5 pillars are deception.
as follows: 2. Circumcision: Muslim boys are generally circumcised on their
1. Declaration of Faith (Shahadah): The confession ‘‘there is no seventh day, but circumcision can be performed at any time
God but Allah and Mohammed is his messenger.’’ The before puberty. There are conflicting rulings on circumcision of
shahadah is said many times over the course of the day, during girls.



3. Breastfeeding: According to the Koran, breastfeeding is option treatment. The patient or his family (when the patient is
recommended for 2 years. During the period of breastfeeding, a child, is not competent or is unconscious) must agree to the
it is advisable that the woman not gets pregnant, and therefore procedure. Surgery is not allowed for elective abortions,
use of contraception is recommended at this time. cosmetic surgery, or sex-change operations.
4. Adoption: Adoption of orphans is desirable, but the child’s last 4. Stem-Cell Research: Research and the possible duplication of
name should not be changed. This will prevent him marrying a organs from embryonic stem cells, created by spontaneous
relative in the future. The adopted child is not entitled to inherit abortion or other medical reason are allowed.
the same portion of an inheritance as the biologic sons in the 5. Plant and Animal Cloning: Plant and animal cloning are
family. permitted on the condition that the benefit to people is proven
5. Unconventional Treatment Methods: Some of the accepted and the harm does not outweigh the benefit. Cloning of
unconventional methods include reading from the Koran, animals is not permitted if the procedure causes short-term or
blessings and prayers to God, use of honey and Nigeria Sativa long-term suffering to the animals. Cloning of prohibited
seeds. There are differences of opinion regarding searing and plants or animals such as marijuana or a combination of pig
burning with heat. Preventative medicine is recommended. The tissues is not allowed.
prophet Mohammed (pbuh) said: ‘‘If you are located in a place 6. Rehabilitative Surgery: Rehabilitative surgery such as breast or
where there is an epidemic, don’t go outside, and if you are burn reconstruction is permitted.
outside (of such place), don’t enter it.’’4 The prophet said the 7. Withholding Resuscitation: ‘‘Do not resuscitate’’ instructions
stomach is the source of health and one does not need to eat too are allowed when there is no prospect for recovery or when
much. The profit emphasized ‘‘when eating, one should consume there is brain death. In addition, a patient’s request that he not
food which is one-third of the capacity of the stomach, one-third be resuscitated if his heart function stops may be honored. It is
fluids, and one-third should remain empty for breathing.’’ permissible not to resuscitate a terminal patient on a ventilator
6. Donation of Blood and Organs: There is a dispute among scholars because of the need for such equipment by patients with good
because of the definition of the ownership of the body and organs prospects for recovery, especially in places where there is a
as to whether they are the patient’s, his family’s, or the creator’s. shortage of ventilator equipment. The Committee for Islamic
The majority opinion is that it is desirable to donate blood and Research and Fatwa, Riyadh, Saudi Arabia, Decree No.
organs to save human life, ‘‘each loss of one soul is as if an entire 12086, was issued in 1988 and ruled that the physician must
world was lost, and he who sustains it is as if he sustained an entire preserve the process of life and not the process of death: ‘‘If
world. ‘‘ (Koran 5:32), but trade in them is not permitted. The three knowledgeable and reliable doctors have agreed that a
prophet said breaking the bone of a dead person is like breaking patient’s condition is hopeless, it is possible to withhold the
the bone of a live person, therefore there are many rulings against patient’s access to lifesaving equipment or to turn off such
autopsies and removal of organs. It must be proven that the equipment. The opinion of the patient’s family members will
benefit to the recipient of the organ is greater than the suffering in not be taken into consideration in making the decision because
removing the organ from the donor.7 they are not qualified to make such a decision.’’
There are scholars who oppose organ donation, on the 8. Cessation of Treatment: is permitted when there is brain death
argument that the body is the property of God.8 According to and a lack of treatment options, such as, for example, a
the religious legal authority Al-Qaradawi, on the other hand, the vegetative state.1 Prolonging life by artificial means, for
organs of the body are the property of God which are in the example through a ventilator, without a prospect for recovery
custody of human beings, like money in their possession. Just as or improvement in the quality of life of the patient in the near
people are permitted to contribute money to the needy, they are future, is not recommended.9
allowed to donate organs to save the life of another, but are not 9. Refusing Treatment: A patient may refuse medical treatment
allowed to take their own lives to save another. In addition, after the importance of treatment and the risks of not receiving
donating blood is an important good deed and it is important to it are explained to him (or to his family if the patient is
encourage it. Regenerative body substances such as blood and bone unconscious or incompetent). The physician must explain the
marrow may be donated without limitation, as long as this provides various implications of treatment or the lack of treatment to
a benefit to the recipient and doesn’t cause harm to the donor. the patient. The death of a patient due to the refusal of
treatment is not considered suicide because of the possibility
that the treatment would not have prevented death. On the
ALLOWED UNDER SHARIA other hand, a patient’s refusal to receive food or fluids is
1. Contraception Methods: The use of contraception between considered suicide and is prohibited by Islam, as it causes the
husband and wife is allowed on the condition that it does not patient’s death.
cause harm and that its effects are reversible (in contrast to the 10. Autopsy: is prohibited unless needed for legal purposes.10
permanent effect of vasectomy or tying of Fallopian tubes),
and that they cannot cause abortion (such as pills taken 120 d
after ovulation). The morning-after pill is allowed. Birth
control methods are not allowed if they are designed to
prevent the birth of girls or to evade responsibility as parents. DISCOURAGED UNDER SHARIA
2. In Vitro Fertilization: This is allowed only if the egg and the 1. Forced Feeding: The prophet Mohammed (pbuh) recommended
sperm of the couple are used and the egg must only be that individuals not be compelled to eat or drink.
implanted in the uterus of the legally recognized wife. Other 2. Smoking: It is not recommended for the Muslim because of the
embryos, which were grown must be destroyed or donated for harm that it can cause to his body. There are those who
research. Sperm frozen before the death of a patient (for categorize it as prohibited under Islam, because God permitted
example before radiation treatments), must be destroyed with things of benefit and prohibited that which causes harm
the death of the patient and the wife is not allowed to use it (habatha) in addition to the Islamic prohibition against wasting
because of the termination of the marital bonds between them. money.4
Refrigerated storage of eggs to extend the period of fertility is 3. Divorce: Of all permitting things, divorce proceedings are the
permissible for a single woman but not for a married woman least desirable for Muslims.
who seeks to defer pregnancy for reasons of career or economic 4. Donating One’s Body: Many Muslims will not agree to donate
condition. the entire body for research and science.11
3. Surgery: Permitted when the surgery is necessary to treat the 5. Abortion: Before 120 days, it is deemed as discouraged, and after
patient. The surgeon and his staff must be skilled and that period, it is prohibited, unless there is a substantial danger
convincing as to the high prospect of success (benefits outweigh to the mother’s life. Abortion before 120 days is permitted if a
the harm to the patient), and that surgery is the only and best defect or serious disease is diagnosed or if there are personal or



economic reasons requiring it. (There is a difference of opinion 12. Milk Bank: The use of a human milk bank is prohibited out of
among the various streams of Islam). concern of future marriage of relatives. There are religious
scholars who have ruled use of human milk banks is allowed
in emergency situations such as the death of the mother or the
birth of a premature baby, on the condition that the source of
FORBIDDEN UNDER SHARIA the milk and the details regarding the babies nursed with the
1. Elective Abortion: Elective abortions of fetuses are not milk are registered.
allowed after 120 days (the age at which the spirit enters the 13. Traditional Treatments: Treatment using magic spells, witch-
embryo and from which it is considered a person possessing craft, exorcism, of evil spirits. There is a prohibition against
rights). Elective abortions are also not allowed when there are use of prohibited substances such as alcohol, blood or
birth defects, because such an abortion is akin to killing an medicine containing pork.
infant with a defect after it is born. Abortion after 120 days 14. Food and Drink: Consumption of alcohol is not allowed, in the
is permitted only if there is a substantial danger to the life of words of the prophet ‘‘that which intoxicates in large
the mother. quantities is prohibited in small quantities.’’ Meat must be
2. Surgical Contraception: Use of surgical contraception such as halal, prepared in accordance with Islamic law and the
vasectomy or the tying of the Fallopian tubes is forbidden consumption of pork, animals of prey, dead animals, or
other than in cases of mental illness or when an additional blood is not allowed.2 The consumption of all animals which
pregnancy would endanger the woman’s life. grow only in water and cannot survive outside of water is
3. Cloning for Purposes of Reproduction: There is no Muslim permitted (therefore all kinds of fish are permitted but
country today, which permits the advancement of research in consumption of frog meat, for example, is not).
the field of human cloning. There are religious law scholars 15. Business: Charging or paying interest is prohibited. This
who argue in favor of cloning between a married man and prohibition is designed to protect the poor and to prevent a
woman under limited conditions. The legislators in Muslim situation in which the rich don’t work and earn their
countries are awaiting further developments and additional livelihood from interest (preventing laziness). Gambling and
information on the subject. ‘‘And you have received but little games of chance are not allowed because of the danger of
of the knowledge’’ (Koran 17:85) and study of the religious, addiction and the negative influence on the individual and on
educational and ethical consequences of the procedure. The society.
opposition of Islam is such that the doctor ‘‘will play the role 16. Plastic Surgery: It is not allowed for purposes of beauty and
of God’’ in fertility, and the destruction of the family sex change operations are also not permitted, because surgery
structure, kinship and future generations. of these kinds involve a matter of the will to change the way
4. Cloning for Purposes of Research and Medical Treatment: God has created man. There is also a prohibition against
There is a prohibition against fertilizing eggs for purposes of attempting to appear like the other sex. Tattoos are not
creating embryonic stem cells. There is a difference of opinion allowed, but applying henna or color to hair or hands is
regarding the fate of surplus fertilized eggs (which were created allowed for women, because they are temporary and do not
in connection with the birth children). The majority opinion is in cause suffering.
favor of using knowledge in this field to reduce human suffering, 17. Suicide and Murder: Attempted suicide, suicide alone, or with
but there is a dispute regarding use of embryonic stem cells and medical or other similar assistance is murder and is absolutely
the definition of the rights of the fetus. forbidden. Suicide is considered a major sin in Islam, pre-
5. Sex Selection: Use of sex selection methods before pregnancy venting entry into heaven.11 ‘‘The end of every soul is to taste
are completely prohibited, but are allowed in individual cases death’’ (Koran 3:185), but at a time determined in advance by
such as when specific inherited diseases are involved. God for each person.
6. Sperm and Egg Donation: Sperm, egg, and fertilized egg 18. Euthanasia:
donations are prohibited. A woman is not allowed to inject (a) Passive Euthanasia: allowed when there is no prospect of
the sperm of a stranger into her uterus. Donation in exchange a cure, to reduce suffering or when there is brain death.
for payment is not allowed. The use of sperm to fertilize the (b) Active Euthanasia: Life is sacred and therefore active
egg of another woman is not allowed out of concern that it euthanasia is not allowed in any manner or circum-
could result in the future marriage of related individuals. stance.2 ‘‘We give life and cause death, and everyone
There are religious law scholars who have likened fertilization returns to us’’ (Koran 50:43).
of an egg by the sperm of another to prostitution. Voluntary active euthanasia: a sin on the part of the patient
7. Masturbation: Permitted to enable sperm donation for in vitro and the person who performs it.
fertilization but not allowed simply for pleasure. Involuntary but active euthanasia: a sin on the part of the
19. person who performs it.
8. Sexual Relations during Menstruation: Sexual relations during
menstruation are not allowed and one must wait until In any event, the patient must be given food and fluids to
menstruation concludes. The woman must then bathe ease his pain and suffering until the time of death. The muftis
(purification) before resuming sexual relations with her (spiritual leaders and judges) in the Islamic world condemn mercy
husband: ‘‘Leave women at the time of menstruation and killing and compare it to murder.
don’t approach them until they are purified.’’ (Koran 2:222). Treatment of a terminal patient may be withheld (a passive
Prolonged bleeding other than during a period of menstrua- act) or stopped (an active act) if brain death, a vegetative state, lack
tion does not prevent a woman from praying or fasting of any hope, a purposeless condition or intolerable suffering are
and she is considered pure. Anal sexual relations are not confirmed.
allowed.
9. Homosexuals and Lesbians: Sexual relations between people of
the same sex are not allowed. In the words of the prophet ‘‘a
man shall not look at genitalia/nudity of another man, and a SICKNESS AND HEALTH
woman shall not look at the genitalia of another woman.’’ For the Muslim, sickness and suffering are part of life and a
10. Prostitution: ‘‘Stay away from adultery, because it is an test of devotion from the creator. From the standpoint of the
abomination, and bad in every way’’ (Koran 17:32). Islam believing Muslim, illness is a matter of coincidence, an attack of the
wished to avoid the destruction of family ties, social evil eye or a spiritual test from the creator.
disintegration, and to preserve the sanctity of the family, to The attitude of the Muslim to illness and his efforts to fight
prevent disease, etc. the illness are varied and include: prayer and reading from the
11. Surrogacy: Islam prohibits it entirely even if the fertilized egg Koran, superstitions (cupping glasses and burns), drinking water
is inserted into the uterus of a man’s second wife. from the Zamzam spring from a mosque in Mecca (Saudi Arabia),



honey and plants, singeing with heat, old cultural mores such as spirit, and the soul are explained through ‘‘the electricity or the
expelling the evil eye up to modern medicine. Emotional and energy (the spirit) and enters the lamp (the body) and the light
physical suffering caused by illness is regarded as a test of faith in which is produced is (the soul). When the energy is cut off, the light
God, expunging the sins of the Muslim.1 This view greatly helps the is extinguished, and the body doesn’t function and life ceases.12
patient and his family to deal with the illness and to overcome the A Muslim is not allowed to look forward to death, because
illness and the suffering. In the words of the prophet Mohammed the time of death is in the hands of God alone.14 Life in this world
(pbuh): ‘‘Demand treatment, for God did not send a disease but is considered temporary and as a period of testing man. Death
sent with it a remedy, other than aging.’’ (Hadith) Despite the represents an active process of the transition of the soul from the
importance of treatment of the illness, the adult Muslim who is current material world to the pure, spiritual world, and the prophet
fully alert is not obligated to accept the treatment, and forcing him explained this as follows: ‘‘Death occurs when the spirit leaves the
to do so is not permitted. body.’’12
According to the various rulings of Muslim religious figures,
PALLIATIVE CARE it has been decided that a terminal condition will be determined
after examination by 3 doctors, and their determination that there
Palliative (relieving) care of the terminal patient is designed is no prospect of recovery. Under such circumstances, the cessation
to preserve the balance between the body, the mind, and the spirit. of aggressive treatment of the patient is permitted.3 A terminal
The Muslim believes that pain expunges sins, but pain must be condition includes the absence of the prospect of recovery and
treated because God opposes human suffering. Opiates can be used biologic death includes signs of brain death.
to relieve pain, but not to speed death (Conduct is judged by
Muslims prefer to die at home, enveloped in the spiritual
intent). support of family and many other relatives. The atmosphere in the
Many Muslims see palliative care as a haven from hospital prevents the gathering of family and clan members.
conventional treatment after being discouraged by conventional Visiting the sick is a frequently-practiced religious good deed,
care, and believe that the treatment does not preserve life but delays especially with respect to a terminally ill patient.8 Staff should be
death and postpones one’s fate. There are those who will feel sensitive to this need, but if the number of visitors exceeds the
discriminated against as a minority or as a result of inferior
capacity of the room, a request should be made sensitively and
insurance, or because they believe that decisions were made to free gently to reduce the number of visits. Close family members should
up space for another patient.12 The use of prayer or supplication to be allowed to be at the patient’s bedside at the time of death
God for purposes of treating diseases has existed in Islam for many because of the importance of reading verses from the Koran and
years, and current research has revealed the contribution of faith in encouraging the patient to die while reciting the Shahadah: ‘‘There
God to cure and to ease the distress caused by disease. Muslim is no God but Allah and Mohammed is his prophet’’ (pbuh). The
prayer brings about emotional and psychologic calm. Charitable family should be helped to seat the patient facing Mecca.
activity and support for the needy also have a positive influence on
(Sometimes the bed must be moved for this purpose.)
one’s health and how one feels. In addition, fasting has an influence Death is defined as a transition from life on earth to a period
on one’s health and how one feels in general.13 of waiting (barzakh) to the day of resurrection and the transition to
The spiritual aspect of the Muslim patient is very important eternal life. Therefore, most Muslims receive death without
in preserving calmness and general wellbeing: disruption to the emotional outbursts, because it is the will of God, and the Muslim
balance causes illness or worsens existing illness. Abu-Bakr Al-Razi believes that God will forgive the deceased for his sins, especially if
was among the first to present the subject in his book ‘‘Spiritual
he made the declaration of faith (the Shahadah) before his soul
Medicine’’ (Al-Tib Al-Ruhani).13 The reading of special verses from departed.1
the Koran constitutes the cornerstone of spiritual healing. The first There is a strict prohibition against family members’
to present the subject was Abu-Zaid Al-Balkhi (who lived from 850 beginning funeral arrangements before a determination of death,
to 934). He wrote the book ‘‘Sustenance for Body and Soul’’ because such activity is regarded as interference in the will of God.
(Masalih al-Abdan wa al-Anfus), in which he stressed the At the time of death, the male adult member of the family should
importance of combined treatment of body and soul. He criticized be notified, either father or husband. Notification given to a
the doctors who in his opinion were interested only in findings
younger male or to a woman is damaging to feelings and to the
about the body when treating illnesses and neglected the emotional accepted family structure.
and spiritual aspects of the patient. Al-Balkhi stressed the At the time at which the patient passes away, it is desirable
importance of treatment by means of looking at beautiful pictures to point his or her face in the direction of Mecca (Saudi Arabia).
(guided imagery) and listening to beautiful music (music therapy). An English nurse in intensive care noted: ‘‘We asked the family if
When death approaches and is unavoidable, Islam enables they wanted to move their son’s bed in the direction of Mecca, and
the patient to die without supreme efforts.3 Medications and
they so appreciated our gesture.’’10 With the pronouncement of
medical technology should be used to enhance the patient’s quality death, the eyes of the deceased should be closed, tubes should be
of life during his life. At the same time, Islam forbids acts that removed, limbs arranged and straightened, and the toes tied. There
expedite death. is no need to wash the body at the hospital, because the body is
Treatment of pain and relieving suffering are most bathed later at the family’s home in a special ceremony.
important. Sheikh Al-Qaradawi was asked what was preferable
for the patient suffering from severe pain, taking pain relievers all
the time or suffering and remembering God. He replied ‘‘he should FUNERAL AND MOURNING
take pain relievers because God does not want him to suffer, and at
the time of severe pain, he will not have the strength to remember 1. Transfer of the Body: The transfer of the body from the
God.’’ The prophet noted: ‘‘When the believer is suffering with hospital or morgue. Assistance should be given to expedite the
pain, even of the prick of a thorn or more, God pardons his sins, death certificate. It is strongly advised to hold the burial
and his wrongdoings are wiped out like a tree whose leaves have ceremony before sundown on the day of death, because
fallen off.’’ Muslims frequently use the expression ‘‘We belong to according to Islam, ‘‘respect for the dead is in burying him.’’
Funerals are held every day of the week, including the Sabbath
God and to God we return,’’ which eases the acceptance of illness
and death. and at times even at night.
2. Bathing the Body (Ghusl): The body is washed with lukewarm
water 3 or more times as needed, but the number of times must
PERCEPTION OF DEATH constitute an odd number (3, 5, etc). The bathing is performed
Death is unavoidable and is determined by God. ‘‘The end by a religious figure of the same sex while reading verses from
of every soul is to taste death, and then to us shall you be returned’’ the Koran. A menstruating woman or one who has given birth
(Koran 29:57) and ‘‘death will reach you wherever you are, even in up to 40 days previously is not deemed pure, and cannot bathe
lofty towers’’ (Koran 4:78). The connection between the body, the a woman who has died.11 The sphincter is sealed with



absorbent cotton. The body of a man is wrapped in a 3-piece distributed to relatives and neighbors (despite the opposition of
seamless white sheet 8 women are wrapped in 5 pieces for religious figures to this visit).
reasons of modesty. The body is placed in an unadorned plain 12. The End of Mourning: Many people observe a ceremony (Al-
wooden casket which is maintained by the mosque for use by Hatama) concluding mourning. Toward the end of mourning,
the entire community, as the dead are buried without a casket. 30 copies of portions of the Koran are prepared and are
3. Funeral to Mosque: The Muslim funeral ceremony is simple distributed to invited guests or people who happen to be
and reflects the message that in birth and death all people are paying condolence visits at that time. Each person reads a verse
equal; a person comes into the world without assets or from the Koran, and in this manner, within a short time, the
possessions and departs only with the list of his deeds. reading of the whole Koran in memory of the deceased is
According to the religion, attendance at the funeral is highly concluded. There are those who prepare mementos such as
recommended, even if the person attending is a passerby. The verses from the Koran etched on pieces of wood for the
casket is transferred to the mosque for prayer. The participa- participants in the ceremony.
tion of women is not allowed over concern that they would 13. Mourning by Widows: When a woman’s husband dies, the
collapse at the time of the procession. The participation of non- mourning period is 130 days.15,16 ‘‘Those among you who
Muslim men is allowed.9 gather with ancestors and leave wives, they shall keep
4. Prayer and Reading from the Koran: The prayer for the dead is themselves for four months and ten days’’ (Koran 2:234).
conducted, which is different from the regular prayer, and is The period is termed a waiting period (aleyda)—the woman
held only standing. After prayer, the casket is transferred to the waits to see if she is pregnant. If she is indeed pregnant, she
cemetery of the clan to which the deceased belonged. cannot marry another man until after she gives birth (and the
5. The Journey to the Cemetery: Young people dig the grave (in child takes the name of the deceased husband); if she is not
an east-west direction) before the appointed time according to pregnant, she is already allowed to marry at the end of the
the wishes of the deceased or the family, if they wish to have it waiting period. A woman who was pregnant when her husband
near a specific relative. According to Islam, it is desirable that died is brought under his casket before all of the people so they
each person attending the funeral carry the casket on his know that she was pregnant by him. During the mourning
shoulders for at least seven steps. During the entire funeral, period, the widow cannot leave the home (other than under
there are 18 men who lead the casket from the home of the urgent circumstances) and cannot wear jewelry, color her hair,
deceased to the mosque and from there to the cemetery. It is or wear colorful clothing.11
rare to do so in a vehicle, and then only if distances are great or 14. After the Days of Mourning: At the end of the mourning
if the weather doesn’t permit going on foot. period, neighbors and friends approach the men in mourning
6. At the Cemetery: The casket is laid next to the grave, and the and ask them to shave and to return to their regular routine,
body is lowered into the grave gently and carefully. The lowering including work. Female friends and neighbors approach
of the body into the grave is generally accompanied by reading women in mourning and ask them to change their clothes, to
‘‘from it—the ground—we created you, and to it we shall return bathe and to return to work. A woman in mourning is allowed
you, and from it we will return and bring you out’’ (Koran to mourn at the graveside. Weddings and other happy
20:55). In the grave, the body is laid on its right side with the face occasions among close family are delayed for a year after the
facing Mecca. The body is covered with sage leaves and marble death. Occasions on the part of neighbors are usually deferred
stones (so that the soil does not press on the body), and then the for 40 days from the day of the funeral.
soil is put back in.11 The corpse should be treated with respect, 15. Family Duty: After the death, the family must fulfill its duties
because the sanctity of the dead is like the sanctity of the living including:
and therefore stepping on the grave is not permitted. Cremation (a) Payment of funeral expenses
is not allowed, because the Muslim believes that the spirit (b) Payment of the debts of the deceased to people or
remains in the vicinity and returns to the body after burial. If institutions
death occurs at sea, burial at sea is allowed.11 (c) Execution of the provisions of the will, if any
7. Condolence Receiving Line: The men of the extended family (d) Distribution of inheritance in accordance with the laws
stand in a line and those attending the funeral proceed by and of Islam (Sharia)
offer their condolences. After the funeral, the family returns to 16. Life after Death: The angel of death gathers those whose time
a mourners’ tent for 3 days.9 of death has come. After death, the body is buried and
8. Mourners’ Tent: Because the Muslim believes that the dead are decomposes, and the soul ascends to heaven. On the day
going to a better life, he receives death with patience and of resurrection, the body and soul are reunited and
restrained emotion. The family is to react with limited grief, appear before God for judgment day, when the fate of the
because shouting disturbs the peace of the dead and reflects person is determined. Islam does not believe in transmigration
denial of the will of God. Garments are not to be torn nor faces of souls.
slapped, which is seen as denial of the will of God.12 The
manner in which grief is expressed varies from culture to
culture. It should be remembered that hugging a member of the
opposition sex is liable to result in greater harm than good. CONCLUSIONS
9. Food: From the time of death until burial, the family is not From the time of natural conception or of in vitro
allowed to eat. For the 3 subsequent days, food is provided by fertilization until natural or assisted death, life is full of moral
neighbors.11 dilemmas on which various parties, including medical, religious,
10. Days of Mourning: Mourning lasts for 3 days. There are legal, and social service personnel in general must come to
separate mourning tents for men and women. Men wear agreement in the interest of spiritual completeness and respect for
regular clothing but it is accepted that men not shave until the human dignity.
end of the mourning period. As a matter of custom and Explaining the faith and the way of life of the Muslim
identification, women wear black, but this is not a religious patient to medical staff will greatly help improve treatment. Illness
requirement. Condolence visits are considered a good deed and and death are shared by all of humanity, but each group, whether
visits by members of the community and the vicinity are made religious, cultural, or ethnic, has a different approach, manner of
on the days of mourning on a widespread basis. Mourners are conduct and way of responding.
served only bitter coffee, although there are those who serve The spiritual treatment of the Muslim patient in general and
water and dates and even cigarettes. the terminally ill patient in particular is essential in easing the patient’s
11. Thursday: On the first Thursday after the funeral, women visit pain and suffering. The patient must be listened to and the differences
the grave. There are those who come with special yellow bread in his values and faith must be accepted, reflecting sensitivity and
(containing turmeric) in memory of the dead, which is mutual respect and avoiding judging and engaging in prejudice.



When the patient is in a circumstance in which he wants to Second, research into doctor-patient communication in palliative
live, but is praying for his death, spiritual treatment, based on reliable care has flourished.3 Focus group and survey data have given us a
information regarding the faith and principles of the patient can better idea of what patients and families say they want from
greatly ease his emotional suffering during difficult periods. physicians when giving bad news, discussing prognosis and
References: negotiating goals at the end of life. Audiotapes of doctor-patient
1. Al-Shahri M, Al-Khenaizan AZ. Palliative care for Muslim conversations tell us what physicians actually say during these
patients. J Support Oncol. 2005;3:432–436. conversations and postconversation questionnaires help us under-
2. Al-Shahri Z, Fadul N, Elsayem A. Death, dying and burial stand the impact of the conversation on a patient’s knowledge,
rites in Islam. Eur J Palliative Care. 2007;13:164–167. attitudes, and psychologic state.4
3. Sachedina A. End-of-life: the Islamic view. Lancet. 2005;366: The data suggests that communication is suboptimal.3,4 For
774–779. example, oncologists do not often talk to patients with advanced
4. Saaidan W. Sharia benefits in some medical issues. Saudi cancer about palliative care. Even when discussions occur, poor
Arabia: Online Arabic Book; 2005. quality frequently undermines their usefulness. Tulsky et al5 found
5. Rassool GH. The crescent and Islam: healing, nursing and the that physicians who do talk about advanced care planning focus
spiritual dimension. Some considerations towards an under- largely on treatments, rarely give patients enough information to
standing of the Islamic perspectives on caring. J Advance make informed decisions, and neglect more general values and
Nursing. 2000;32:1476–1484. goals. When patients express negative emotions, their doctors
6. Gatrad AR, Sheikh A. Hajj-journey of a lifetime. BMJ. typically respond by changing the subject, by providing reassur-
2005;330:133–137. ance, or by providing cognitive information. It is, therefore, no
7. Rispler-Chaim V. Islamic Medical Ethics in the Twentieth surprise that most oncologists are inaccurate in their assessment of
Century. Social, Economic and Political Studies of the Middle patients’ emotional distress.
East, Vol. 46. Brill Academic Publishers; 1993. In response to the above findings, numerous papers have been
8. Sheikh A. Death and dying – a Muslim perspective. J Royal written suggesting how physicians can more effectively commu-
Soc Med. 1998;91:138–140. nicate.6 There are guidelines about how to give bad news, how to
9. Gatrad AR. Muslim customs surrounding death, bereavement, discuss prognosis, how to talk about transitioning to end of life,
postmortem examinations, and organ transplants. BMJ. raising code status preferences, how to discuss religious and
1994;309:521–523. spiritual issues, and how to talk about death and dying. In
10. Sheikh A, Gatrad AR. Caring for Muslim Patients. 2nd ed. addition, others have suggested specific phrases such as ‘‘wish
Radcliffe Publishing; 2008. statements’’ and ‘‘hoping for the best and preparing for the worst’’
11. Green J, Green M. Islam. In: ed. Dealing with death—A or have written about skills such as using one’s self as an
handbook of practices, procedures and law. 2nd ed. London instrument, being empathic, or appreciative inquiry.
Philadelphia: Jessica Kingsley Publishers; 2006:272–278. Although this literature is large, we believe all these guidelines are
12. Hedayat K. When the spirit leaves – childhood death, grieving, based on a few common principles. Our goal in this paper is to
and bereavement in Islam. J Palliative Med. 2006;9:1282–1291. suggest 7 overarching communication principles. In addition to
13. Syed BI. Spiritual medicine in the history of Islamic medicine. summarizing the principles, we suggest how a clinician can
J Int Soc History Islamic Med–JISHIM. 2003;2:45–49. operationalize the principles.7
14. McKennis T. Ann: caring for the Islamic patient. AORN J.
1999;69:1187–1196.
15. Gulam H. Care of the Muslim patient. ADF. 2003;4:81–83. PREAMBLE
16. Qur’an – The Holly Book. First, 3 caveats. Although we believe the principles have a wider
applicability in healthcare, we have concentrated on conversations with
patients with serious life-limiting illnesses. We have focused on serious
illness both because this is the area that we know best and because the
Principles Guiding Palliative Care Communication stakes are so high when the patient has a life-limiting illness. The
Robert M. Arnold, MD, and Anthony L. Back, MD. Institute for patient with advanced disease must deal both with physical deteriora-
Doctor-Patient Communication, Section of Palliative Care and tion and the emotional impact of a life-limiting illness. They face
Medical Ethics, Montefiore University Hospital, Pittsburg, PA. complex treatment decisions, often involving research and must try to
Regardless of what a doctor does, he talks with patients and their understand copious amounts of medical information as well as
families. Talking is how the doctor figures out the agenda for the specialists who may give them conflicting information. Patients
visit (What can I do for you today?), and it is how he comes to a simultaneously face the challenge of hoping for the best while
diagnosis (How long have you had the pain? What makes it better/ confronting the existential and spiritual aspects of dying.
worse? Can you describe the pain?). Through verbal and nonverbal Against this background, the clinician must establish a
expressions of empathy, a doctor builds a relationship with the therapeutic relationship based on trust and mutual respect. The
patient, increasing trust and satisfaction. Talking is how he doctor’s tasks include determining the patient’s informational and
educates and motivates the patient to adhere to the treatment plan. decisional preferences, providing information and medical options
In the last 10 years, there has been increasing interest in doctor- in a way that the patient can understand, and attending to the
patient communication, particularly in palliative care. First, many emotional and social issues associated with progressive illness—all
important organizations have emphasized the importance of within the constraints of a busy practice. When doctors can
communication in the care of patients with serious illness. In the accomplish these tasks well, there is often a deep sense of
United States, for example, a number of important organizations fulfillment and having made a difference at a critical point in a
have called for improved communication skills focusing on the end patient’s life. Patients and families, conversely, describe great
of life. The National Cancer Institute designated cancer commu- dissatisfaction if communication is suboptimal.
nication as an ‘‘extraordinary scientific priority’’ in 2002, and Second, the principles are general rules of thumb for which
developed a Health Communication and Informatics Research there are varying levels of evidence. The state of the science has
Branch. An Institute of Medicine report entitled Ensuring Quality produced few controlled trials, so we will try to integrate relevant
Cancer Care recommended that cancer treatment discussions observational, survey, and qualitative studies from the medical and
should represent shared decision making between oncologist and psychologic literature. The resulting principles, we believe, will
patient, which requires that the oncologist have excellent commu- apply to most patients in most circumstances. They are not,
nication skills. Finally, the National Institute of Health State of the however, foolproof. For example, principles may conflict, and we
Science in End-of-Life Care summary statement concluded that have not tried to lay out a way to prioritize them. In addition,
‘‘effective communication is critical’’ to improving outcomes in doing the right thing is not a guarantee of success, as any doctor
end-of-life care.1,2 who has seen a patient on appropriate antibiotics worsen knows.



Our goal is to broadly describe general principles to guide convince them is central to the mediation literature. Understanding
communication rather than developing a comprehensive theory the other party’s beliefs allows one to build on shared knowledge
of communication for patients with life-limiting illness. and explain differences in perception. In the intensive care unit,
Finally, we have tried to focus the principles broadly rather where discontinuity of healthcare providers is associated with the
than focusing on particular types of conversations. We looked for misunderstandings regarding basic medical facts, asking what the
the features that are common to discussion of bad news, goals of patient knows may help keep everyone on the same page. Finally,
care, transition to end of life, conflicts over the goals of care, etc in when giving bad news, knowing what the patient knows allows the
developing the principles. We acknowledge, however, how the physician to anticipate the patient’s reaction.
principles are operationalized differ depending on the specific topic The easiest way to operationalize this is to ask the patient
as well as details regarding the patient’s medical condition and (What have others told you is going on with your illness?). In fact, it
culture. Those details are beyond the scope of this paper.7 is often wise to start almost every encounter this way (Since we last
talked, can you tell me what others have told you is going on? or I
know we talked yesterday about a lot of different things. Just to make
THE PRINCIPLES sure we are on the same page, can you tell me what you remember?).
The 7 general principles are as follows: It is important to ask this question correctly. Asking a
1. Negotiate the patient’s agenda. patient about their perception (‘‘what have other doctors told
2. Ask what the patient knows before giving information. you?’’) is different than asking a patient what they think is going on
3. Think about giving information like dosing a pill: The amount (What is going on with your illness?). The former question focuses
and timing matter. on what the patient understands about what others have said. The
4. Attend to the patient’s emotions: Empathy is important. later question focuses on the patient’s beliefs regarding their
5. Start with the patient’s goals before talking about specific condition. This may be related to what others have said but may be
treatments. based on what they have read, conversations with nonhealthcare
6. Nonabandonment is essential to the physician’s role. providers, or their cultural beliefs. Both questions are important.
The former because it will tell you if the patient has heard what
7. Be aware of yourself as an instrument of care. healthcare providers are trying to say and the latter will tell you if
they agree with the healthcare providers’ assessment.
Principle 1: Negotiating the Patient’s Agenda Finally, it is also important to assess the patient’s under-
There is a great deal of data regarding the importance of standing after you have given information. The goal of informed
negotiating with patients about what they want to talk about and consent is to ensure that the patient understands his condition and
when to raise particular issues. Although studies show that most the possible treatments so that the treatment he chooses is likely to
patients want prognostic information, for example, a significant advance his goals. The only way to ensure adequate understanding
minority do not. There is no way to predict this, and data from is to ask the patient. An indirect way to do this is to ask about the
focus groups suggest that patients want the doctor to negotiate questions or concerns they have about the information you
about if and when to discuss prognostic information. provided. (What questions do you have about what I just said?)
The most straightforward way to operationalize the Another way is to ask what they will tell their loved one about the
principle is to ask the patient about their concerns at the beginning conversation when they do home (To make sure I have done a good
of their visit (What did you want to make sure that we talk about job explaining what is going on, can you tell me what you will tell
today?). Continuing to probe until the patient has nothing else to your husband about our conversation?).
add is important as the patient may not bring up their important
concerns the first time you ask. (Is there anything else you wanted to Principle 3: Think About Giving Information Like
make sure we talk about?).
Inquiring about the patient’s agenda does not mean that Dosing a Pill: The Amount and Timing Matter
you must give up the things you want to accomplish in the When giving bad news, it is not a question of giving ‘‘all of
encounter. It does, however, mean that you should explicitly the facts’’; it is a question of giving the facts that the patient wants
negotiate the goals of the meeting early in the visit. (I wanted to at the time the patient wants to hear them. When they are
make sure we talked about how you are feelings and go over the test emotionally engaged, patients have limited capacity to process
results. And it sounds like you are concerned about your back pain. information. Thus, giving large bits of bad news often results in the
Let’s start with that and then talk about the test results. Ok?) patient saying, ‘‘After he said cancer, I just tuned out.’’ What
Negotiating the encounter’s structure gives you both an idea of patients understand is based on what and how it is said. The data
where the interview is going and helps ensure that you attend to the on health literacy enforces this point. Patients may have trouble
issues that are most important to the patient. understanding probabilistic talk or medical jargon. Words
Asking permission before discussing important topics such common in the medical field such as metastases, palliative, and
as prognosis, goals of care, and bad news is implied by the code status are often misunderstood by patients
principle. (Is it ok that we talk about what the future might bring? Is Given that people can only retain 3 to 7 pieces of information
this something that you want to hear about?). These questions help at a time, it is important before you start giving information that you
ensure that the patient receives the amount of information that want the patient to take home from your visit. Giving all the medical
they want. In addition, it is respectful to give the patient control details is likely to overwhelm the patient and may lead them to focus
over the pace of the interview. on details that are not critical. In addition, it is important,
Finally, although the patient’s stated agenda is important and particularly in the beginning to start at a literacy level that most
the place to start, as one gets more skilled, you should consider the patients will understand, typically fifth or sixth grade.
patient’s unstated agenda. The way to think about this is to ask Finally, it is important after giving information to check in
yourself, ‘‘What kind of doctor does this patient need me to be today?’’ to see what the patient has heard and understands. (What questions
Is the patient hoping you will be a cheerleader pushing them to get do you have about that?) In this way, giving information is exactly
through this time, or is he hoping you will be a counselor offering like dosing a medication. One gives information, checks under-
advice but letting him make the decision? Figuring this out is not standing, and then gives more information based on what the
easy–it requires you to pay attention to what your patient says (and patient heard.
does not say) as well as how he responds to what you say.
Principle 4: Attend to Emotions: Empathy is
Principle 2: Ask What the Patient Knows Before Important
Giving Information Patients with serious advanced illness often experience
Although there is little direct data supporting this principle, negative emotions such as anxiety, depression, and sadness. Left
the importance of asking people about their views before trying to unresolved, these emotions could lower quality of life. Fortunately,



physicians can help patients resolve these negative emotions by show that you are trying to understand what the patient is going
responding empathically. Empathic responses strengthen the through (I can’t imagine what it must be like). ‘‘R’’–respect confirms
patient/physician relationship, increase patient satisfaction, de- how well the patient has been doing in the face of the difficult
crease the need to restate the negative emotion, and may make obstacles (I can see how you are struggling to be present for
patients more likely to disclose future concerns. your children even as you are going through chemotherapy). The
The first step in responding empathically is recognizing purpose of all these statements is either to validate or support the
when patients are expressing emotions. Patients may express patient.
emotions directly by using ‘‘emotionally laden’’ words such as Some clinicians worry that being empathic will make
scared, worried, sad, depressed, etc. They may also allude to their visits last a lot longer. The available data suggests that this
emotional state indirectly, for example, ‘‘I don’t know if I can approach may take a few minutes more during routine ambulatory
handle this anymore.’’ In these cases, the tone of their words often visits. The impact during more emotionally charged conversa-
reflects their emotional state. Finally, they may sigh or cry or show tions about prognosis, end of life, or bad news has not been
other nonverbal expressions of their emotions. studied. We do know, however, that as little of 40 seconds
Some clues may help the doctor recognize when an emotion of empathic communication is noticed by and preferred by
is being expressed. First, most people have an emotional reaction to patients.
bad news. Thus, after giving bad news to a patient, one should be Finally, one may wonder about how much empathy is
attentive to emotional cues. Second, if the patient keeps raising the enough. There is no simple answer to this question. In general, as
same issue even after you have given the cognitive information, it long as the patient is expressing strong emotions, one should
may be a sign that emotions are either blocking the patient’s ability continue to make empathic responses. Typically the patient will tell
to listen or that key issue is an affective one. For example, the you when she wants to return to the cognitive part of the same by
question, ‘‘How could this have happened?’’ may either be asking, ‘‘What do we do next?’’ or ‘‘So what are you suggesting?’’ If
addressed cognitively (When we have to put in foley catheters there you are unsure, one can always ask (Is it ok if we turn to what the
is always a chance of infection) or empathically (I can see how next steps would be? or Would you like to talk about what I can do to
frustrated you are that every time things seem to get better, help with those concerns?). If the patients respond by expressing
something else happens). emotions, it is an indication that they are not ready to return to the
Once the physician recognizes that emotion, the physician cognitive part of the interview.
can respond empathically. Nonverbal empathy involves using one’s
body and gaze to convey interest in the patient and her story. The
acronym SOLAR is way to remember specific skills that show
empathy (Table 1).8 For example, the ‘‘S stance’’ reminds you to Principle 5: Focus on the Patient’s Goals Before
face the patient squarely to indicate interest in what she is saying. Talking About Specific Treatments
The ‘‘O’’ suggests that adopting an open body posture shows you There are data showing that physicians, when they are
are open to what the patient has to say. discussing treatment at the end of life, focus the conversation on
asking the patient to decide on specific treatments rather than
focusing the conversation on treatment goals. Thus, for example, the
discussion of resuscitation preference focuses largely on whether a
TABLE 1. Nonverbal Expressions of Empathy patient ‘‘wants’’ resuscitation rather than resuscitation’s outcomes. In
addition, the focus is often on why medical treatments should not be
S Face the patient SQUARELY to indicate interest in her story instituted rather than what can be performed to improve the patient’s
O Adopt an OPEN body posture as a sign that you are quality of life.5 There are reasons to think that this style of
open to the patient communication is undesirable. First, the patients are often poorly
L LEAN toward the patient to show intimacy informed about the risks and benefits of the disease-modifying
and flexibility towards the patient’s position therapies. They are unable to make informed decisions regarding
E Use EYE CONTACT to show you are paying whether the therapy will achieve their goals. Second, this model of
attention decision making risks reducing the doctor to passively listing options.
R Maintain a RELAXED body posture to Most patients prefer a shared decision-making method in which the
decrease patient anxiety doctor and patient make the decision together. Patients typically
From The Skilled Helper: A Problem-Management and Opportunity- want a doctor who makes personalized recommendations based on
Development Approach to Helping. 7th ed. California: Brooks/Cole; 2002. their intimate knowledge of them as a person. Finally, this model
focus on what the physician is concerned about–performing
unnecessary medical treatment rather than the patient’s goals for
promoting a good quality of life.
The acronym ‘‘NURSE’’ describes ways to be verbally Operationalizing this principle is complex. First, it may be
empathic toward the patient’s emotions (Table 2).9 For example, helpful to step back and try to understand the patient’s values and
the goal of ‘‘U’’ –understanding the emotion is to normalize and goals. This means understanding what is valuable to the patient at

TABLE 2. Verbal Expressions of Empathy
Patient emotional statement:
‘‘These headaches are killing me!’’
Empathetic physician responses:
N NAME the emotion: ‘‘You seem frustrated.’’
U UNDERSTAND the emotion ‘‘I can not imagine what you are going through.’’
R RESPECT (praise) the patient: ‘‘I’m so impressed how you have tried to make sure
everything is done for your mom’’.
S SUPPORT the patient: ‘‘I and my team will be here to help you as regardless
what happens’’.
E EXPLORE the emotion: ‘‘Tell me more about what you are thinking about.’’

From Fischer G, Tulsky J. Arnold R.



this point in their illness. Questions that may get at this include: Principle 6: Nonabandonment is Essential to the
‘‘What is important to you now?’’ or ‘‘What are you hoping for?’’ Physician’s Role
Getting the patient to tell you about what is going on and what is
important in their life outside of the hospital is also a valuable way In almost every study, patients and their families stress the
to explore the patient’s goals. It can help you understand what the importance of a kind of physician presence that we will call
nonabandonment. Regardless of their medical condition, patients
patient is doing in his day-to-day life, how much he like those tasks,
want their physicians to stick by them. Conversely, in studies
and how he views their importance in the future. To get the full
picture, it is also important to keep asking the question until the looking at why patients and families are dissatisfied with care at the
patient is out of ideas. (Are there other things you are hoping for?) end of life, physician abandonment comes up frequently. For
For example, although a patient may initially hope for a cure, if example, patients complain that when they are in hospice, their
you keep asking, you might find out that the patient is also hoping doctors no longer came to see them, or that their doctors did not
to be at home, to be kept comfortable, and to not be a burden on visit them when they were in the intensive care unit even if the
doctor had not direct patient care responsibilities.
his family.
One can operationalize nonabandonment in a variety of
Sometimes, rather than talking about the patient’s goals,
ways. First, when talking to the patient it is important to be fully
outlining the patient’s worries can free the patient up to talk about present—give the patient your full attention. Particularly when
what is most important. Questions to get at their worries are ‘‘What having difficult, emotionally charged conversations, this means
is your biggest concern right now?’’ or ‘‘When you think about the giving the patient your undivided attention. Sit down, turn off your
future, what are the things you want to avoid?’’ beeper, stop writing or typing at the computer, and listen as
After you understand the patient’s values and goals, it may intently as you can to what the patient is saying. Second, stress
help to check your understanding by feeding them back to the
your willingness to be there for the patient regardless of his medical
patient. In addition of making sure you are on the same page, it has
condition. This shows that you care about him as a person rather
the advantage of showing the patient that you are attending to him. than just as a biologic entity. (I want to make you know I am going
(Let me see if I understand what you are saying. The most important to come back every day and make sure your questions are answered).
thing at this point is to make sure your family is going to be ok with Sometimes it is appropriate to stress that you and the patient are
whatever happens. On the other hand, you want to make sure there a team working together to ensure that the patient gets the best
are no options for your liver failure. Other things you mentioned as
possible care. In today’s era of hospitalists and shift work, it is
important includey Did I hear you correctly?)
important that the principle of nonabandonment be applied to
Although it is important to focus on the patient’s goals, this teams. This means letting patients know when you are going off
does not mean you cannot make suggestions about goals or service, and letting them know who the doctor coming on service is
concerns. After all, you have a great deal of experience and may be (I’m not going to be around this weekend, but my colleague, Joe
able to suggest hopes or concerns that the patient has not thought Smith, will be. I have talked to him about you, and he will see you
of or may be afraid to voice. It may help to normalize your both Saturday and Sunday).
suggestions by saying ‘‘Some patients in your situation are concerned
Third, another way to conceptualize nonabandonment is that
about what will happen as they get sicker. Is this something you want
you are ‘‘on the patient’s side.’’ Too often in palliative care, it feels like
to talk about?’’ the patient and doctor are disagreeing over the medical facts: the
After being clear about the ‘‘big picture,’’ it is appropriate to patient hopes for prolonged survival but the doctor says that things
develop strategies to achieve these goals. Sometimes the patient will are getting worse. The patient may perceive this as the ‘‘doctor giving
have ideas about what specific strategies she wants to pursue. Other up’’ or ‘‘losing hope.’’ One way to join with the patient is through
times, given your expertise and experience it may help to make
‘‘wish statements.’’ A key aspect of these statements is that they make
recommendations about how to achieve the patient’s goal. The first
it clear that you want things to be different, thus placing yourself on
step is to offer a recommendation (Can I make some suggestions about the patient’s side. (I wish there were medicines that could help us reverse
how we can help you achieve those goals). The purpose of the offer is your illness and let you live a lot longer). Another technique is to ‘‘hope
2-fold. First, it is polite and shows respect for the patient as a for the best and plan for the worst.’’ The problem in these cases is not
decision-maker. Second, it increases the probability that the patient that the patient is hoping for a low probability event. The negative
will pay attention to what you have to say. The patient, by giving you impact of unrealistic hopes is due to the patient being unable to
permission to make recommendations has implicitly agreed to engage
entertain or include other possibilities into their planning for the
in a conversation with you about the topic at hand.
future. Not being able to consider things getting worse and thus not
As a physician, your job is to match the patient’s values and completing a will or advance directive or helping the family to be
goals with the appropriate treatment strategies. It is important to prepared for his death is the problem. The hope for the best, prepare
focus first on what you will do to help the patient achieve her goals for the worst approach allows multiple possibilities to be held at the
(see nonabandonment principle). Be explicit about your reasoning same time, allowing discussion of difficult possibilities that otherwise
so the patient can see the connection between your recommenda-
could not be considered. It aligns the patient and physician on the
tion and the goals. (Given your goal is to stay as functional as
same side, allowing for hope and also for planning for the
possible for as long as possible, I think it makes sense to continue the contingencies of disease progression.
antivirals. Although they make you a bit nauseated, it does seem they Finally, nonabandonment means that we are careful in our
have helped with your energy, and you have been in the hospital less use of language. Too often, end-of-life care is described both by
since you have been on them.) In cases where you are unsure about patients and doctors as getting less or giving up. Rather than
which strategy best achieves the patient’s goals, note this and ask
‘‘doing everything,’’ you are providing ‘‘only comfort care.’’ Rather
for the patient’s opinion. (There are 2 things we could try. I am not
than being aggressive, you are ‘‘letting nature take its course.’’ The
sure–given what you have told me would be best. Let me describe languages that we use may lead patients to assume that we are not
them and then I need your input). After what should be done to as involved, and hence, may be withdrawing from the patient. It is
achieve the patient’s goals, you should also point out the treatment important to describe end-of-life care not as doing less, but as
that you do not believe will help to achieve the patient’s goals and changing your focus based on the patient’s medical facts and
recommend that they not be done. This is particularly important in current goals. Thus, you can stress that you are ‘‘aggressively
America where certain treatments are expected if a patient should
treating symptoms,’’ or describe how hard you are working to
worsen (eg, cardiopulmonary resuscitation).
achieve the patient’s goals.
After making your recommendations, it will be important to
engage in a discussion with the patient about the plan. This is another
opportunity to make sure you have understood the goals and that Principle 7: Be Aware of Yourself as an
your plan accurately reflects the patient’s current priorities. The Instrument of Care
discussion also is a way to demonstrate your willingness to be flexible There is a great deal of data that shows that as far as
and develop a personalized plan for the patient. palliative care communication goes, ‘‘it depends on the doctor.’’



The doctor’s personal background and attitude strongly influence what you want them to watch for as otherwise they may give you
the decision-making process. In fact, some studies suggest that a extraneous feedback on areas on which you are not concentrating.
patient’s end-of-life plan has more to do with the doctor’s values (This can be very discouraging.) Make sure you they tell you both
and preferences than with the patient’s. Other data suggests that what you did well and what you could improve. The former will
doctors’ emotional reaction to death and dying may influence their help remind you what you need to continue to do, and the latter
communication about end-of-life issues. For example, the longer a will suggest some areas to work on.
doctor knows a patient, the worse she is at prognosticating about If you can’t get anyone to observe you, think of audiotaping
the patient’s illness. The doctor’s emotional ties to the patient may yourself and listening to the tape. If you do this, be kind to
color her impression of the patient’s prognosis In our experience, yourself. Learning new skills is difficult. It may be particularly
we found that doctors often have trouble giving bad news or difficult in the field of communication. Most of us have spent years
speaking clearly about a patient’s prognosis because it makes them, learning bad habits because they seemed efficient and got us
the doctors, too sad. through the day. Unlearning these old habits takes attention and
To operationalize this principle means being more self energy. Your progress may seem nonlinear as you revert to old
aware. For example, you could try to pay more attention to your habits when you are stressed or overly busy. This is normal. Also
own emotional state when having difficult conversations with remember that even when you follow all the principles, sometimes
patients. We are not suggesting that you try to avoid being it just does not work. Sometimes, bad pneumococcal pneumonia
emotional. On the contrary, we think that emotional reactions are does not respond to penicillin, even if it is the right treatment. Some
normal and show that you have developed a close, personal mountains are not meant for successful skiing. Pick yourself up,
connection with the patient. We are suggesting that you try to consider if you could have done anything different and try again
become more aware of your emotions ‘‘in the moment’’ so you can with the next patient.
make a conscious decision about how the emotions influence your Finally, see if you can become a better observer of others’
communication with patients. Rather than unconsciously avoiding communication skills. To a certain extent, we want you to become
talking about prognosis because it makes you too sad, we are a connoisseur of doctor/patient communication. Like a connois-
arguing that you name your sadness. Interestingly, just being aware seur of wine, you will be able to begin to recognize the very specific
of how sad the conversation is may give you some control over the ways that the above principles are operationalized in conversations
emotion. For example, realizing that you are sad, you may with patients. By being more observant about what others are
acknowledge it, take a deep breath, and decide you still need to talk doing, you will also become more observant about how you
about the patient’s prognosis. communicate with patients. This will allow you to more clearly
A second step would be to reflect on what might help you recognize what you are doing well and where you are getting stuck.
deal with the emotions that are elicited when talking about end- Communicating with patients is difficult and yet ultimately
of-life topics. Now that you recognize the emotions, the next step is rewarding. When talking to patients with life-threatening illnesses,
to use them to improve your communication skills. For example, you have an opportunity to identify and address their concerns as
recognizing your emotions may also help you more effectively feel well as help them deal with the difficult emotional issues that come
what the patient is experiencing. The helplessness you are feeling with progressive illness. The above principles are designed to give
that the treatment is not working may be exactly what the patient you a road map for these conversations and identify specific skills
is experiencing. Being aware of this will allow you to be more to allow you to have more successful conversations.
empathic. Having insight into your emotions may also allow you References:
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Recent studies suggest that physicians can, with practice, Housestaff experience discussing do-not-resuscitate orders.
improve their ability to operationalize these principles. However, Arch Intern Med. 1996;156:1285–1289.
to do so requires that you intentionally work on your skills. In 6. Back AL, Anderson WG, Bunch L, et al. Communication
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learning.7 First, pick 1 principle at a time. It is difficult to learn to 7. Back AL, Arnold RM, Tulsky JA. Mastering Communication
do everything at once. For example, when you are learning to play With Seriously Ill Patients: Balancing Honesty With Empathy
tennis, you do not to serve, volley, hit backhands and forehands And Hope. Cambridge; 2009.
simultaneously. So it is with communications. Choose a principle 8. Egan G. The Skilled Helper: A Problem-Management and
that you feel you want to improve, and then decide on a skill or 2. Opportunity-Development Approach to Helping. 7th ed. Cali-
For example, if you want to focus on attending to emotions, you fornia: Brooks/Cole; 2002.
might decide to practice NURSE skills. Work on using the skills in 9. Fischer GS, Tulsky JA, Arnold RM. Communicating a Poor
situations where you are likely to succeed. When you are learning Prognosis. In: Portenoy RK, Bruera E, eds. Topics in Palliative
to ski, you do not initially practice going down the most difficult Care, Volume 5. 2000:75–94.
hill. First, you practice your skill on an easy hill, where if you fall 10. Epstein R. Mindful Practice. JAMA. 1999;282:833–839.
you will not hurt yourself. We are suggesting a similar strategy in
learning to operationalize the above principles.
Initially it is hard to practice and evaluate yourself at the
same time. You spend so much of your energy trying to enact the Fungating Breast Lesions in Locally Advanced Breast
new skill that it is hard to see where it is going well and where you Cancer—Physical and Psychosocial Aspects
are getting stuck. Therefore, it is important to ask others to for help Merav Ben-David, MD. Radiation Oncology Department, Sheba
as you are trying to improve. Ask a nurse or social worker to Medical Center, Ramat-Gan, Israel.
observe you and give you specific feedback on the principle you are Abstract: Despite public education efforts and wide availability of
working on. For them to be useful, you need to tell them exactly screening programs for breast cancer, some women still present



with locally advanced disease. Very locally advanced breast cancer Wound malodor is probably one of the most distressing
can represent clinically as ulcerating or fungating breast lesions and symptoms of ulcerative lesions. Necrotic tissue in a humid
are constant reminder for the patient of her progressive, incurable environment will eventually get infected with anaerobic bacteria,
disease. These lesions are associated with physical, psychologic, resulting in wound malodor, constantly detected and reminding the
and social problems; they rarely heal and often require palliative patient of her disease. Moreover, the smell might trigger gagging
management to improve quality of life through symptom control. and vomiting reflexes.8,11–14
Women with ulcerating breast lesions suffer from depression, Controlling the infection with systemic antibiotics as
embarrassment, fear, shame, and guilt feelings. Luck of self respect, metronidazole and metronidazole topical gel will reduce the odor.
self esteem, and social isolation are also part of their struggle. This Tight dressing around the wound area and charcoal containing
article will review the physical and the psychosocial effects of dressing will attract and bind the volatile odor causing molecules
ulcerative breast lesions and will present some of the current from preventing their escape from the local wound area.8,11–13
palliative care options. Fungating wounds are often composed of fragile, friable
Breast cancer is one of the most prevalent cancer diagnoses in tissue. Tumor blood vessels eroded by the progressive malignant
women. The incidence of locally advanced breast cancer is growth, together with decreased platelets function within the
decreasing in Western countries, despite the fact that overall tumor, resulting in frequent bleeding. Dressing change or other
incidence of breast cancer is increasing. There are 2 major reasons minor trauma can be the trigger for bleeding, a common situation
for the decline in advanced stage of breast cancer at diagnosis: occurring in ulcerated lesions. Nonadherent dressing and main-
mammography screening and public education.1 Estimations are taining moist wound environment will assist in gentle removal of
that only 6% of breast cancers will be larger than 5 cm in diameter. the dressing. Hemostatic sponges, alginate dressings, or topical
However, there are reports of locally advanced breast cancer that adrenalin can help control wound bleeding.8,11–13 In the case of
comprises 5% to 20% of new breast cancer diagnosis every year in major bleeding, the patient should be referred to vascular surgeon
certain series or even higher in medically underserved areas in the to consider surgical intervention as embolization.15,16
United states.2,3 Pain associated with ulcerative lesions may be neuropatic or
In developing countries, 40% to 50% of breast cancer represents nociceptive in origin, and also associated with dressing changes.
locally advanced disease.2 In Nigeria, 89% are diagnosed at stage Pain assessment and aggressive pain management are performed
III or IV due to ignorance and fear from medical facilities.4 A according to the World Health Organization (WHO) guidelines.
recent report by Adesunkanmi et al5 found that 39% of breast Nonadherent dressing can be changed with minor pain and
cancer in Nigeria had fungating lesion as presenting symptom. premedication before dressing change may also be useful. Topical
Locally advanced breast cancer with or without skin involvement is opioids such as morphin or diamorphin were described as excellent
defined as AJCC tumor stage T4.6 By definition, T4b lesion include pain control in open, ulcerative malignant wounds.7,8,11,12,17–20
tumor with clinical presentation of edema (including peau Pruritus and infection are also described as causing
d’orange) or ulceration of the skin of the breast or satellite skin discomfort in women with fungating lesions. Antihistamines to
nodules confirmed in the same breast. This heterogeneous group of control the itching and systemic antibiotics to reduce bacterial
tumors includes neglected slow-growing tumors that may be colonization are recommended approaches for management of
present in the breast for years before diagnosis, neglected, and pruritus and infection.11,20
although locally advanced, invasion of the skin can be confined to For many women with locally advanced breast cancer,
the breast with no regional lymph node involvement. Another systemic treatment with antihormonal agents or chemotherapy can
group of ulcerating lesions includes fast-growing tumors having be palliative and reduce the size of the lesion as well as associated
high proliferative indices, with tendency to destroy adjacent tissues symptoms.3 Radiation therapy can be administered with single
and invade the chest wall muscles and ribs. They are very therapeutic fraction or in multiple fractions, with good palliative
aggressive, and often present with disseminated metastatic disease.1 outcome. Radiation can be used for bleeding and control of exudates
Generally, ulcerative, fungating wounds occur more frequently in or for pain management.1 Some authors describe aggressive surgery
older people.7 with reconstruction of the chest wall defect with various flaps.15,16
Breast cancer is the most common neoplasm to fungate and Rankin et al16 used transcatheter arterial embolization for bleeding
approximately 62% of fungating malignant wounds develop in the lesions with bleeding control in 8 of 9 patients.
breast or the chest wall area.8,9
Malignant fungating wounds result from cancer cells infiltrating
the dermis, lymph nodes, and blood vessels through direct invasion PSYCHOLOGIC PROBLEMS ASSOCIATED
or local metastatic spread. Although the fungus appearance of the WITH FUNGATING LESIONS
mass also named cauliflower and broccoli shaped lesions is typical, The female breast is regarded as a symbol for femininity
histologic confirmation of breast cancer origin is mandatory. A and sexual desirability and for many cultures the breast is central
reduction in the oxygen diffusion to this growing tumor will result to ‘‘being a woman.’’ Society places great importance on having
in tissue hypoxia and ultimately tissue breakdown. This area is an attractive body so body image becomes an essential part of
consequently colonized by aerobic and anaerobic bacteria, which is everyday living. Having a diagnosis of breast cancer is a double
the cause of the characteristic malodor as well as large amount of threat to a woman, with the fear of having a potentially fatal
exudates production often associated with fungating malignant disease and the fear from disfiguration and discomfort. With
wounds.9 visible, sometimes associated with malodor wound in this intimate
body area, a woman can no longer ignore the knowledge of having
a life-threatening disease. She may feel a loss of physical well being,
PHYSICAL PROBLEMS ASSOCIATED WITH physical integrity, role, sexual function, life expectancy, and control
FUNGATING LESIONS AND TREATMENT OPTIONS over the disease process.21 Topping22 suggested that body image is
The most frequently reported wound symptoms are related to self concept, self esteem, and personal identity. Self
exudates, malodor, bleeding, and pain.8 esteem is the sum of body image, aspirations and goals, interactions
Fungating wounds often produce excessive amount of with others, values, beliefs, and prejudices. Therefore, evaluating
exudates. Increased permeability of blood vessels inside the tumor the quality of life of a woman with fungating breast lesion demands
and secretion of vascular permeability factors by tumor cells are the multiple views and layers on her special situation as described by
most likely causes of high volume levels of exudates. The presence Naylor.23
of infection will increase the production of exudates.10 Leakage of She provides a conceptual model illustrating the potential
the fluids from the dressing is a very distressing phenomenon, and impact of a malignant fungating wound on a patient’s quality of
efforts should be aimed for reducing the amount of the exudates life. The model is based on a framework proposed by Ware,24 and
and proper dressing of the area. Any signs of infection should be explores the interrelationships between wound symptoms/problems
treated promptly with oral antibiotics.8,11–13 and their effect on different aspects of health and functioning. This



framework moves beyond the immediate impact of disease to 3. Harris J, et al. Diseases of the breast. Third ed. Philadelphia,
explore its effect on the patient’s wider psychosocial environment PA: Lippincot Williams Wilkins; 2004.
(JJ. Clinch, 1998, no. 31). The core of this model is the wound 4. Hassan I, Onukak EE, Mabogunje OA. Breast cancer in Zaria,
itself, with the initial impact on the patient’s physiology. Therefore Nigeria. J R Coll Surg Edinb, 1992;37: 159–161.
the central area of the model shows the wound-related symptoms 5. Adesunkanmi AR, et al. The severity, outcome and challenges
and the interactions between these different symptoms. The effect of breast cancer in Nigeria. Breast. 2006;15:399–409.
then spreads outwards to physical functioning, psychologic function- 6. Favret AM, et al. Locally advanced breast cancer: is surgery
ing, general health perception, and social and role functionings. The necessary? Breast J. 2001;7:131–137.
objective of developing this model was to identify the relationships 7. Ivetic O, Lyne PA. Fungating and ulcerating malignant lesions:
between the different aspects of fungating wounds and how these a review of the literature. J Adv Nurs. 1990;15:83–88.
impact on other areas of health. The literature suggests that the 8. Grocott P. The management of fungating wounds. J Wound
psychosocial problems experienced by patients with fungating wounds Care. 1999;8: 232–234.
are directly related to their symptoms and this model supports these 9. King R. Breast Cancer Nursing Care and Management. In: H
findings. V, ed. London: Whurr Publishers; 2003.
The smell produced by fungating breast wounds can inhibit 10. Haisfield-Wolfe ME, Rund C. Malignant cutaneous wounds: a
intimacy with a partner and lead to depression.17 People may show management protocol. Ostomy Wound Manage. 1997;43:56–60,
with instinctive reactions, such as revulsion and nausea, revealed 62, 64–66.
in facial expressions. Malodor is unpleasant and can lead to 11. Harmer V. Breast cancer. Part 2: present and future treatment
alienation, loneliness, guilt, withdrawal, apathy, reclusiveness, modalities. Br J Nurs. 2008;17:1028–109, 1032–1035.
depression, and reluctance to engage in social activity (JJ. Clinch, 12. Grocott P. The palliative management of fungating malignant
1998 no. 31; 11, 18). wounds. J Wound Care. 2000;9:4–9.
Sexuality and femininity were studied in a paper by Lund- 13. Grocott P. Exudate management in fungating wounds. J
Nielsen et al.20 In their study, women with fungating breast wound Wound Care. 1998;7:445–448.
experienced feeling of loss of femininity and suffered a double 14. Toller SV. Invisible wounds: the effects of skin ulcer malodour.
stigma as each woman in the study had mastectomy and afterward J Wound Care. 1994;3:103–105.
experienced a smelly and seeping malignant, fungating wound on 15. Martella S, et al. Surgical closure of chest wall in nonin-
her chest.20 All women opted for safe and secure home surrounding flammatory locally advanced breast carcinoma with ulceration
to avoid exposing themselves or others to uncontrolled situations. of the skin. Breast J. 2008;14:345–352.
They describe the most threatening situation as someone would 16. Rankin EM, Rubens RD, Reidy JF. Transcatheter embolisa-
smell the wound or someone would notice it. Many of the women tion to control severe bleeding in fungating breast cancer. Eur J
in that study chose to isolate themselves from their social circle by Surg Oncol. 1988;14:27–32.
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Patient’s quality of life is badly affected when malignant Ostomy Wound Manage. 2003;49:9–12.
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reminder of her disease and incurable situation. The symptoms women with breast cancer: feminine and sexual perspectives. J
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