164 JCNVolume 30, Number 3 journalofchristiannursing.com

164 JCN/Volume 30, Number 3 journalofchristiannursing.com
Gail E. Pittroff, PhD, RN, is an Assistant Professor
at St. Louis University in St. Louis, Missouri, and a
Commissioned Lay Minister in the United Church
of Christ. She has experience in ICU, maternal
newborn, hospital administration, hospice, and inpatient
palliative care.
The author declares no conflict of interest.
Accepted by peer review 1/9/13
DOI:10.1097/CNJ.0b013e318294e8d3
By Gail E. Pittroff
Humbled Expert:
An Exploration of Spiritual Care Expertise
ABSTRACT: This interpretive phenomenological study
explored
how inpatient palliative care nurse consultants provide spiritual
care
and how they acquired these skills. Humbled experts describes
the
nurses’ personhood and spiritual care practices, offering insight
for
skilled spiritual care in any setting.
KEY WORDS: chaplaincy, end-of-life, nursing, palliative care,
spiritual care

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Copyright © 2013 InterVarsity Christian Fellowship.
Unauthorized reproduction of this article is prohibited.
http://www.journalofchristiannursing.com
journalofchristiannursing.com JCN/July-September 2013 165
component of quality end-of-life care,
yet there is a paucity of research on
spiritual care in the inpatient setting at
the end of life. The purpose of this study
was to better understand how inpatient
palliative care nurse consultants provide

spiritual care and how they acquired
these skills. Additional aims included
discovering the personhood of nurses
providing spiritual care for dying patients.
A purposeful sample of 10 experi-
enced palliative care nurse consultants
working in inpatient palliative care
in the Midwestern United States
were recruited for two recorded
semi structured interviews to produce
20 transcripts. Institutional review
board approval was obtained from the
author’s institution, and informed
consent was obtained from all partici-
pants. A historical self-awareness, nurs-
ing process, and expertise in practice
interview guide were utilized to
obtain narrative data (Benner, Tanner,
& Chesla, 2009). Transcripts were
decoded, checked for accuracy, and
analyzed by the primary investigator
(PI). Themes were identified by the
PI and verified by a team of experi-
enced interpretive phenomenological
researchers as well as validated by
participants.
Interpretive phenomenology,
which seeks holistic understanding
and illumination of phenomena, was
the methodology used for this study.
This is an appropriate research method
for examining the everyday practice
and skill of providing spiritual care.
As nurses presented narratives about

caring for patients and families at
end of life, they described the lived
experience of providing spiritual care
in concrete situations where meaning
and shared experiences were uncovered
and skills and practices explicated.
A CHORUS OF HUMBLED
EXPERTS
Ten female nurses actively employed
as inpatient palliative nurse consultants
participated in this study. They had a
median age of 54.5, with 31 median
years in nursing and 6.5 median years
of palliative care experience. Two of the
nurses worked in urban settings, four
in suburban, and four in rural settings.
Lord, make me an instrument of your peace. Where there is
hatred, let
me sow love; where there is injury, pardon; where
there is doubt, faith; where there is despair, hope;
where there is darkness, light; and where there is
sadness, joy. O Divine Master, grant that I may not
so much seek to be consoled as to console; to be
understood as to understand; to be loved as to love.
For it is in giving that we receive; it is in pardon-
ing that we are pardoned; and it is in dying that

we are born to eternal life. Amen
Saint Francis of Assisi
predicated on being humble; humility
is essential for providing care and com-
fort. “Humbled experts” represents the
personhood and spiritual care practices
of the palliative care nurse consultants
interviewed for the study. Although
this study focused on inpatient pallia-
tive care, nurses in any setting can learn
much about spiritual care from the
nurse participants.
Inpatient palliative care is a rapidly
exploding field of study. Caregivers in
palliative care seek to understand the
problems and challenges of end of life
through research, which provides
evidence for the best care of patients
and their families. Spiritual care is a key
EXPLORING SPIRITUAL
CARE EXPERTISE
S
aint Francis of Assisi, medieval,
mystic, and monastic, com-
posed this famous prayer of
poetic paradox (Tyson, 1999).
The word paradox literally means
something contradictory or opposite of
what makes sense, yet represents truth.

Humbled experts is a paradoxical theme
that emerged through a study of pal-
liative care nurse consultants and their
spiritual care expertise (Pittroff, 2010).
Expertise in professional healthcare
often is in contradiction with humil-
ity. Yet, in the context of spiritual care
at the end of life, nursing expertise is
transcendent meanings and concerns.
Through the practice of ordinary acts of
nursing care, clients can experience, in
their last moments on this earth, the
very mystery of our existence. Religious
parlance would speak of this as partici-
pation with an “experience of the
redemptive activity of the Mystery at the
heart of things” (Dykstra, 1999, p. xi).
Many of the nurses testified with
conviction about a reinforcement of
their spirituality, mutuality of care,
and mystery of human existence they
experience while attending to the
spiritual needs of others. Cindy
had direct personal and professional
experience with loss and the redemptive
nature of spiritual care inclusive of God,

self, and others. She highlighted the
void that exits when spiritual concerns
are dismissed and death is denied:
PI: You mentioned feeling
excluded from your grandmoth-
er’s funeral when you were
young. What other experiences
had an impact on you?
Cindy: I’m a cancer survivor
myself. We’ve had a lot of cancer in
our family, so I’ve experienced a lot
of death as an adult in our family. I
think that’s why I initially was asked
to participate in putting our palliative
team together here at the hospital.
People knew my experiences... they
thought I’d be good at it, and my
past experiences have helped a
bunch.
PI: How would you say it’s
helped?
Cindy: Well, I’ve had surgery,
chemotherapy, radiation. I understand
the side effects, the feelings, the
anxieties, and the fears. I think that
just helps me relate to patients and the
families… My illness also strength-
ened my faith, because I had a lot of
prayer at that time, I was baptized at
that time. So I think I kind of went
through a transformation during my
cancer treatment that increased my

faith and strengthened it.
PI: So you relied on your
religious beliefs and the rituals
that you’ve learned as a Christian?
Their educational levels included two
associate, five bachelors, and three
masters degreed nurses. Every nurse
reported active participation in a
faith tradition; nine Christian and one
Unitarian Universalist were repre-
sented. Pseudo names were assigned
to the nurses to protect anonymity.
None of the participants reported
receiving education in spiritual care in
their basic nursing education, especially
at the end of life. What little knowl-
edge they did receive was just the “tip
of the iceberg.” Bev, when asked if she
had received spiritual care training in
nursing school, said, “No absolutely
not, oh wait I take that back, we had a
lecture on the five stages of grief, one
lecture, that was it.” Melissa saw
spiritual care as part of the holistic
model of caring in all settings and said:
Nurses provide spiritual care all
the time, but not formalized like a
chaplain would, but they do and
sometimes we don’t even realize that
were doing it. It’s part of our overall
nursing care that isn’t defined as
spiritual but it is.

All participants had continuing
education in spiritual care through
conferences or personal study. How-
ever, it was largely through their
personal life experience, participation
in a faith community, and evolving
nursing practice that they learned to
recognize and offer an alternative to
spiritual suffering. All had experienced
loss, some through personal illness and
many through family illness and death.
The following excerpts represent the
notion of humbled experts. The
opportunity to provide care at end of life
was described as a “gift” and the role of
providing presence, support, and spiritual
advocacy as “honor and privilege.” The
capacity to provide care of this nature is
related to the nurses’ own experience
of suffering and loss, growing spiritual
awareness, and learned ability not to
judge others. The experience of being
with people undergoing loss and death
creates a context of hospitality, invitation,
and mutuality of care. These experiences
also have enlarged the nurses’ own
perspectives on life:
Jane: People very much invite you
into their lives… As I arrived she
took her last breaths…this was the
end of an ongoing relationship with
many difficult decisions being made…
I looked upon this as a gift… Her

death was very peaceful and I was
able to be present…It’s an honor to
be part of that.
Melissa: The patient had just
died…the daughter was screaming on
the floor, so I got on the floor with her
and tried to support her. I spent a lot
of time with her, not always saying
anything, just being present with
her, holding her hand. One of the
physicians said to me, ‘That’s not
your job…’ I’m thinking, it is my job,
that’s part of palliative care, to support
the family, that’s really what the nurse
does, you know, and it is spiritual.
Vicki: I have learned not to be
judgmental of people and to accept
people for who they are. Before this, I
took care of patients in their homes…I
saw people with nothing, dirty homes,
very sad situations, high illiteracy
rates… Gosh, when you started
talking to some people, victims of
sexual abuse and incest, I wasn’t even
aware of that… I was really sheltered.
Working in hospice and palliative care
was eye-opening for me, because you
go home humbled every day from
that. You think I’m so grateful for
my family and what I have.
Lucy: Looking back on my
hospice experiences made me realize
that you can’t be judgmental. Every

family is very different, there isn’t a
right way and a wrong way, it’s just
their way. The biggest piece is trying
to put yourself in their shoes…and
saying to yourself, if this was me, and
I were in this situation, what would I
want to hear?
Invitation, hospitality, support,
presence, nonjudgment, and the
recognition of gift and grace represent
the etiquette these nurses embody while
providing spiritual care. Benner et al.
(2009) call this “ethical comportment,”
an attribute of agency in expert nursing
practice. The manners and humbled
relational stances of the nurses engage
and permit actualization of spiritual and
nurses in this study intentionally work
to create and embody a subject-to-
subject stance rather than the subject-
to- object distancing so prevalent in
healthcare. Within this relational
stance, study participants described feel-
ings of hospitality, privilege, honor, and
mutuality. Bev illuminates the personal
understandings and professional

experiences that engender this stance:
I discharged a patient to hospice
today and I thanked him for allowing
me to care for him…To be able to
help people at this time of life, their
most difficult, to take that last step
with them is truly an honor… as you
become older I think your spirituality
develops more, because as you mature,
you recognize the meaning of life.
Bev describes herself as a “cradle
Catholic” (Catholic from birth). She
holds firm to her belief and faith
conviction that as she stated, “I was
born to love and serve God and
others.” Bev also articulated her
journey into palliative care as being
influenced by her father’s death and
the positive connection and experi-
ences her father and entire family
encountered with the hospice team
prior to his death.
Bev highlighted how personal
experience with loss, in addition to
providing insight and help for others,
also has the potential for interfering
with spiritual caring. This occurs when
personal self-disclosure supersedes the
awareness of client needs. Bev is clear
about the importance of humility and
this assists her in maintaining an “I and
thou” or humbled relational stance:

I see this at times when not so much
patients, but families are struggling to
do the right thing for their loved one.
Someone on the healthcare team, when
beliefs… the power the human spirit
has amazes and humbles me a lot. I feel
very fortunate… it puts the rest of my
life into perspective too.
The chorus of the nurses’ voices
revealed that through a humbled
relational stance, the client and family
experience support, presence, nonjudg-
ment, and empathy. The nurses describe
the opportunity to provide spiritual care
as one of gift, privilege, and honor, taking
a relational stance when providing care.
“I AND THOU” RELATIONSHIP
Years of experience and learning
engendered responsiveness and
empathy from the nurses when dealing
with people undergoing, tragedy, loss,
and fear of the unknown. They
provide for their clients what theolo-
gian Craig Dykstra (1999) metaphori-
cally calls “bread instead of stones”
(p. 13). They accomplish this largely
through a relational stance they
maintain with their clients, which
Martin Buber (1958) named an “I and
Thou” relationship. This is a subject-
to-subject rather than a subject-to-

object way of relating. It necessitates a
humbling of self and reverence to
another for full engagement. Pohl-
man’s (2009) research on fathers of
critically ill preterm infants discussed
the technological gaze that persons fall
victim to in the healthcare setting, and
the objectifying stance this creates in
modern institutional care.
Jesus, in the hours before his arrest
and crucifixion, taught the disciples the
gift of servanthood through the act of
washing their feet (John 13:1-17).
Jesus embodied through ritual a
humbling of self and reverence to
another. He honors the disciples and
ultimately, through an “I and Thou”
relational stance, honors God. The
Cindy: I think for self-support as
well as trying to help support others.
Certainly I think faith is really
important. It’s important to help get
you through crisis, and no matter
what the outcome, you need that.
Cindy’s dialog highlights the inter-
secting relationship inclusive of God, self,
and others that is articulated in spiritual
care literature (Guido, 2010; Kelly, 2004;
Taylor, 2002) and the things that matter
to her in terms of spiritual care and
practice. Dunne (1997) discusses how
practices rely on socially embedded
practical knowledge; certainly both

shared and tacit background meanings
enter into the world of nursing practice
in this setting and others. Cindy’s
experiences of being excluded from her
grandmother’s funeral, personal illness,
and multiple losses of loved ones
combine to inform her practice. Her
“Being” represents, as Gadamer (1975)
described, a “fusion of horizons” (p. 304)
with those she cares for. This, simply
put, is a shared social reality or under-
standing of and participation with others
who face similar exclusion, dislocation,
illness, fear, anxiety, and death. Cindy’s
very “Being” and capacity to respond to
suffering is grounded by her personal
and professional experience. This
“fusion” is affirmed by those who knew
and recruited her to start a palliative
care program.
The following excerpt from Donna
summarizes the honor and mystery of
life revealed to her while providing care:
To me it is really an honor to be able
to assist people on this journey…People
are very honest at the end of their life
and you get a glimpse to see into their
soul… I see souls, I see spirits, they’re
incredible beings, and I know they’re
going to go on. It reaffirms my spiritual
Expertise in professional healthcare often

is in contradiction with humility.
Sophia: You know it’s interesting
because people come with a lot of
hope, and we talked about hope in the
meeting. The chaplain said sometimes
hope changes and goes from hope for a
cure, to hope for time, and then a hope
for peace. I think because those words
came from a chaplain, it was more
comforting to the family. Chaplains
are faith-driven and there may be a
mistrust of the medical at this point…
But when the family acknowledges
peace, something that people get
spiritually from God, I think it opens
up a dialogue for me as a nurse
practitioner, where I can say, ‘Well,
we are not able to cure this, but we can
provide comfort…’. The chaplain also
promised the wife that someone from
their department would see her husband
each shift for prayer and support.
Nothing can be more valuable to
families when they can’t be here around
the clock than a promise that someone
will be here to pray and hold the hand

of their loved one. That was at the end
of the meeting, the family agreed to
changing course and the patient is now
[receiving] comfort measures only.
Sophia sees a bigger picture and
recognizes that agency in expertise
involves an interdisciplinary team
approach. As a nurse expert, she views
the chaplain as a valuable presence not
limited to offering spiritual care.
Sophia views the chaplain as a source
of building trust, assisting with decision
making, and creating space for her as a
nurse practitioner to continue in a
dialog of how best to provide comfort
for individuals and their families.
Being with chaplains also enables
mentoring, which adds to the nurses’
repertoire of spiritual care skills. The
nurses reported learning nuances of
spiritual care by listening to and
entire palliative team. She views
spiritual care as inclusive of all that
gives meaning and value to life,
including the religious aspect that, for
many patients, articulates the essence
of spirituality. She considers the focus
of palliative care one in which you
utilize the entire team to holistically
meet client needs. This team approach
highlights what Benner et al. (2009)
called expert agency, the ability to
work in and through others to meet

client needs:
Bev: I always, well I won’t say
100% of the time, but for the most
part I have the chaplains come in
and discern spiritual needs. They are
the experts in that field; they are
equipped to respond to patients from
an active religious standpoint as well
as general support and spiritual
guidance… Enlisting all the experts
in the care of patients is really what
palliative care is all about.
All of the nurses spoke to the value
of their pastoral care departments for
meeting spiritual care needs. Many
reported a strong team relationship
with pastoral care. Sophia, a nurse
practitioner, highlighted the impor-
tance of chaplain service and the team
approach of meeting spiritual care
needs and making difficult decisions:
Sophia: I work very closely with
chaplains because so many times
people are coming in receiving bad
news, and they need the support that
medication can’t give. So every time
we have a family meeting, I will
bring the chaplain with me.
PI: So you just had one of
those meetings today, what was
that like?

we’re having meetings, will all of a
sudden start talking about something in
their personal life involving a crisis….
It doesn’t help, it’s irrelevant… If the
family wants to know more they will
ask you about your personal life, but for
the most part families don’t…Later
families will say to me oh, “I felt so
sorry for him [the team member]” and
I’m thinking wait a minute, it’s not a
about him, it’s about you.
Self-disclosure regarding personal
experience and/or beliefs can be
beneficial and may enhance the
involvement of care. But central to
spiritual care is a client-centered
therapeutic relationship. Caregivers
must continue to examine if their
motivation for self-disclosure is
meeting their own needs or the needs
of their clients. Taylor (2002), when
discussing spiritual self-awareness,
suggests nurses ask themselves, “What
is the purpose of my self-revelation?
For whom is this disclosure? Will my
disclosure enhance the therapeutic
relationship?” (p. 71). This holds true
for the disclosure of personal life
experience as well as personal beliefs
and values. Bev views her relationship
with clients as “invitation” and responds
to their hospitality to cojourney with
them at the most difficult moments as

one of “honor and privilege.” She is
aware of the difference between
self-serving commentary and commu-
nication that meets client needs.
Through this awareness she is able to
embody a humbled expert relational
stance, which includes her ability to
enlist other experts.
“ENLISTING OTHER EXPERTS”
Bev’s humility assists her in careful
discernment of not only her nursing
role but also the expertise of the
Personal experience with loss…has the potential
for interfering… when personal self-disclosure
supersedes the awareness of client needs.
spiritual caring skills can be cultivated
at all levels of the nursing skill con-
tinuum, from student to novice to
expert. Additionally, this study rein-
forces the concept that not all scientific
nursing knowledge branches from a
Cartesian rationalist cause and effect,

positivist framework. Nursing relies on
both scientific theory-based knowing
and the experiential art of tacit
knowledge and skills for caring.
Together, science and art enhance,
inform, and enliven the discipline of
nursing to permit agency and expertise
in practice. The humbled expert nurses
in this study articulated the awareness
of the fragility of life, the essence of
spirituality and whole persons, the
experience of suffering, and the deep
human need for connectedness.
Acknowledgment
Funding was received for this
research from the Goldfarb School of
Nursing and Sigma Theta Tau Interna-
tional Tau Iota Chapter.
Benner, P., Tanner, C., & Chesla C. (2009). Expertise in
nursing practice: Caring clinical judgment and ethics (2nd
ed.). New York, NY: Springer.
Buber, M. (1958). I and thou (Smith Classic Translation).
New York, NY: Macmillan.
Dunne, J. (1997). Back to the rough ground. Notre Dame,
IN: Notre Dame Press.
Dykstra, C. (1999). Growing in the life of faith. Louisville,
KY: Geneva.
Gadamer, H. (1975). Truth and method. (Sheed and Ward
Ltd., Trans.). New York, NY: Seabury.

Guido, G. W. (2010). Nursing care at end of life. Upper
Saddle River, NJ: Pearson.
Kelly, J. (2004). Spirituality as a coping mechanism.
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Pittroff, G. E. (2010). The cultivation and practice of spiritual
care expertise in an inpatient palliative care setting. (Doctoral
dissertation). Retrieved from ProQuest LLC. (AAT/
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Pohlman, S. (2009). Fathering premature infants and the
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Prayer of St. Francis of Assisi. (n.d.). Retrieved from
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Shulman, L.S. (2010). Forword. In P. Benner, M. Stu-
phen, V. Leonard, & L. Day (Eds.). Educating nurses: A call
for radical transformation (pp. ix–xii). San Francisco, CA:
Jossey-Bass.
Taylor E. J. (2002). Spiritual care: Nursing theory, research
and practice. Upper Saddle River, NJ: Prentice Hall.
Tyson, J. R. (1999). Invitation to Christian spirituality: An
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Young, C., & Koopsen, C. (2011). Spirituality health and
healing: An integrative approach (2nd ed.). Toronto: Jones
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care practices. This knowledge is

utilized through a team approach as
well as in isolation with their clients.
In summary, the astute perceptual
skill and tacit knowing of expert nurses
providing spiritual care at end of life are
hidden in the unassuming posture of
humility. Yet, it is humility that permits
and actualizes the spiritual aspects of
care. The humbled expert nurses in this
study embody spiritual skills of caring
that include presence, courage, silence,
touch, nonjudgment, and empathy for
patients and their families. These nurses
know when they are beyond the scope
of their practice and the interdisciplin-
ary team is frequently enlisted. In
service to others, the nurses describe a
mutuality of care, a reciprocal phenom-
enon present in the caring relationship
as they get as much as they give and
describe their role as one of “gift,
privilege, and honor.” Their experiences
in life and in practice have enlarged and
enlivened their whole perspective of
life, informing these nurses with more
unique and refined ways to respond to
suffering. It is through the humbled
expert nurse that patients and families
experience grace instead of awkward-
ness, comfort instead of suffering, hope
instead of despair, and a paradoxical
peace. Indeed, “The Lord takes pleasure
in his people; he adorns the humble
with salvation” (Psalm 149:4, ESV).

IMPLICATIONS FOR PRACTICE
AND RESEARCH
This study is unique in that it
examined the personhood and spiritual
care practices of inpatient palliative care
nurses, a relatively new specialty that
emerged in the United States within
the last decade. This study illuminates
expert nurses as possessing astute practical
and tacit skills that create a context for a
meaningful, peaceful, and dignified death,
and acknowledges the practical, ethical,
and moral value of nursing care at end
of life. The results support the need for
structures and policies that will continue
and develop inpatient palliative care
providers and programs.
The spiritual caring of the nurses in
this study was dependent in part on
personal life experiences, loss, and faith.
Future research should explore how
mimicking the behaviors of chaplains.
Lucy discussed how she often is in a
situation when someone dies and the
chaplain is not available or the family
declines chaplain services. However, in
the death moment, Lucy is the one left
to help with closure before the family
leaves the hospital. Lucy mimics the
chaplain to help her meet spiritual
needs at those times. She carries a small
collection of sacred literature and poetry,
which she utilizes when appropriate.

Lucy is comfortable with prayer, yet
modest when discussing her ability to
weave thoughtful words carefully
together to offer peace at end of life:
I would love to pray as the chaplains
do, more spontaneously… I also get too
emotional, when [I] say a prayer I almost
always tear up, I’d like to get more help
with this and be able to do that.
Lucy values the healing presence and
carefully crafted words that chaplains
provide at the most difficult times in
life. Young and Koopsen (2011) point
out that only 20% of hospitalized
patients in the United States see a chap-
lain. Lucy tries to be prepared when
called upon hoping to meet patient and
family needs while simultaneously
experiencing her own grief and loss.
The nurses in this study are clear
about their role in spiritual care. Bev,
Sophia, and Lucy highlighted their
awareness of when they are beyond the
scope of their expertise. They operate
with a team mentality in meeting
client and family spiritual care needs.
Yet, they also recognize the overlap of
specific disciplinary knowledge and
skills inherit of the nursing role.
Shulman (2010) names nursing as a
hybrid profession, one that is reflective
of the attributes of other professions
while maintaining a unique identity of

its own. The nurses in this study draw
insight and knowledge from many
disciplines to inform their practice and
provide care at end of life. This again
points to the Benner et al. (2009)
model of expert agency as working in
and through others to provide the care
their clients need and desire. Pastoral
care is highlighted as the discipline that
informs much of these nurses spiritual
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4.pdf
JAOA • Supplement 7 • Vol 107 • No 12 • December 2007 •
ES33Bruce • Helping With the Grieving Process
When addressing pain, it is impor-tant to recognize an
inextricable
relationship between physical experi-
ences of the body and those that are
emotional, cognitive, and spiritual.
Feeling pain is paradoxical: both unde-
niably real and exclusively subjective in
measurability. Whether specific phys-
ical contributors to a given experience of
pain can be judged to be neuropathic,
nociceptive, or visceral in origin, all psy-
chogenic components of pain—psy-
chological, social, spiritual, and emo-

tional—will be added to the physiologic
register and mediated through the cen-
tral nervous system. The effect will be
reverberating, greatly influencing the
ability of patient, family, and the care-
giving team to cope with the patient’s ill-
ness and gain the comfort and hope that
is so necessary to maintaining quality
of life. The pain of grief is no exception,
and can be a powerful factor in the total
pain experience that must be managed
not only by the patient, but also by all
those involved in the patient’s care.
Grief can be defined as the neu-
ropsychobiological response to any kind
of significant loss, with elements both
typical and unique to each individual
or situation. The grief response is gen-
erally associated with degrees of suf-
fering, at times intense or even unbear-
able, and of widely variable duration.
Grief is a systemic event, whether the
system is an individual or a larger group
of individuals thrown out of equilibrium
through changes brought on by loss.
Mourning is the shared expression
of a grief experience, important in
gaining a new equilibrium following
any manner of deficit, including
decreased function or role, loss of
assumed health, and diminished dreams
of the future. Grief and mourning
together constitute the grief process, rep-

resenting movement from life through
death and back into life again. A grief
process for the patient with cancer and
all those related in the system of care
may begin at the time of a prognosis of
terminal illness, but more often even
before that point, at the onset of any life-
limiting or life-altering condition. Every
change in status will alter the ensuing
grief trajectory to some degree.
In the medical arena, the team that
has focused its efforts on healing often
drops out when a patient becomes ter-
minally ill. Patients and family mem-
bers may experience this “dropping out”
as abandonment at the moment of their
greatest need by the experts to whom
they have entrusted their hope. They
are left to traverse the landscape of
approaching death on their own, with all
its emotional intensity, often without
knowing what to expect or how to inter-
pret what is happening to the patient
physically. How can medical profes-
sionals become personally prepared to
assist in this often intense and very inti-
mate passage of life into death and in its
aftermath? The best preparation is both
didactic and personal.
Knowledge About Grief
Specifics of the grief process are being
widely investigated today as health pro-
fessionals attempt to delineate “normal”

grief from that which is “complicated or
prolonged,” qualifying for intervention as
a clinical condition. Complete under-
standing of this profound experience will
better prepare all care providers to offer
the most effective intervention(s) under
given circumstances. Such knowledge
may also assist those working through
this very natural, necessary feature of
human life to progress to a more positive
outcome.
Modern psychology, from Sigmund
Freud forward, has offered models of
the grief process—both descriptive and
task-oriented—that serve to define
“appropriate, healthy, normal” sorrow
and provide guidance through what is
often called “the journey of grief.”1
The anguish of loss is a universal
phenomenon, whereas mourning prac-
Physical experiences of the body and those that are emotional,
cognitive, and
spiritual are inextricably related. The author, a hospice
bereavement coordinator
and counselor, discusses how medical professionals can become
personally
prepared to assist in the often intense and intimate passage of
life into death
and later through both didactic and personal preparation. She
also describes the
major models of grief processes and illustrates the power a
caring professional
can have during the dying process and in the aftermath of a

patient’s death by
relating personal case scenarios.
J Am Osteopath Assoc. 2007;107(suppl 7):ES33-ES40
Correspondence to Christine A. Bruce, MCAT,
MDiv, LMFT, 1023 Kipling Rd, Rydal, PA 19046-
3339.
E-mail: [email protected]
Helping Patients, Families,
Caregivers, and Physicians,
in the Grieving Process
Christine A. Bruce, MCAT, MDiv, LMFT
This continuing medical education publication is supported
by an unrestricted educational grant from Purdue Pharma LP.
tices vary across cultures; mourners bring
their own respective life histories and
context to the grief experience. There-
fore, amid the diversity of approaches
to grief, three attitudes remain the basic
foundation for healing practice: empathy,
attentiveness, and respect.
� Empathy springs from simultaneous
awareness both of oneself and of another
person.
� Attentiveness requires a level of per-
sonal comfort sufficient under extreme
circumstances to remain “tuned in”—
cognitively, emotionally, and spiritually
“present.”
� Respect entails cultural sensitivity and

openness.
Case Scenario
A significant event in the life of my father,
a physician, illustrates the principles of
empathy, attentiveness, and respect. That
event was his first encounter with the
death of a patient.
As a first-year medical student at Penn-
sylvania State University in 1943, he had
been designated on a Friday afternoon to work
in the emergency room. Around 4:30 PM, a
25-year-old woman, the mother of two young
children, was brought in and assigned to him.
She was several hours into the sudden onset
of respiratory distress of unknown cause. As
my father began to take a careful history, he
could see that this woman’s life was ebbing
away. He brought in the resident and called
for the chief physician; no one knew what
was happening except that her pericardial
sac was filled with fluid, which they aspi-
rated to no great effect. The hours passed and
at 3 AM, despite efforts of the staff, she con-
tinued to decline. At that time in medicine,
there was nothing more that the hospital staff
could do for this woman.
My father stayed with her, though the
shifts came and went. In my father’s own
words:
I couldn’t leave her, and no one knew
what was wrong except that her heart
and lung systems were all messed up.

So in my very unprofessional and
naive way, I just sat and held her hand.
I never left her—I couldn’t leave her.
Her life was slipping away. She kept
saying, ‘I’m going to die, doctor,’ and
I kept telling her, ‘We’re going to do
everything we can for you, and every
time you have any pain or discomfort,
you let me know and I’ll have the
nurses do something about it.’
During the night, my father was given
the task of informing the patient’s husband
that his wife was dying. Although it was not
a part of standard medical protocol at the
time, it occurred to my father to inquire of her
husband about her spiritual affiliation. The
man responded that they were Catholics.
Acting on instinct, my father called for a
priest and participated in the ritual of extreme
unction with the patient and family. At 5
AM, approximately 12 hours after the young
woman’s admission to the emergency room,
the patient died. A postmortem examination
revealed that she had died of Ayres disease, a
hereditary pulmonary stenosis for which there
was no known intervention six decades ago.
The next day, the patient’s husband
called the hospital to obtain the name of the
medical student who had stayed up all night.
The family invited my father to the home for
the wake, grateful to him as the “doctor” who
had cared for their family member in her
dying hours, and grateful for his sensitivity

to the family’s emotional and spiritual needs.
His participation in the end-of-life story of
this patient and her family would become a
foundation of healing for them in the after-
math; for my father, it was an unforgettable
lesson in the power of a caring professional.
We live in a grief-saturated world.
More than 2 million individuals die in
the United States each year. It is difficult
to estimate how many others are directly
affected by these deaths, and it is even
more complex to estimate how many will
have compromised health due to bereave-
ment. Healthcare institutions may fail to
address the needs of the bereaved.
Although the primary responsibility of
healthcare providers is to the patient, the
well-being of the family and others close
to a dying person is also part of terminal
illness. Even practitioners who perceive
these needs may have trouble addressing
them when third-party payers refuse to
reimburse bereavement services. Grief
affects not only individuals and commu-
nities; but it is also a significant public
health issue of concern to employers,
policy makers, healthcare providers, and
managed care administrators.2
Grief as a Natural Response
Although grief can become prolonged
or complicated, it is not an intrinsically
pathologic state, but rather, a normal and
needful adjustment response. What are

some common, predictable grief reac-
tions? Every one of us has experienced
them to some degree in the face of loss.
In the cognitive-emotional realm, there
may be disbelief, sadness, anger, guilt,
and self-reproach, panic, anxiety, lone-
liness, listlessness, and apathy, shock,
yearning, numbness, depersonalization,
and, depending on the circumstances,
relief.
Grievers may become preoccupied
with their loss, and their thought pro-
cesses can become confused. There may
be a sense of timelessness. If someone
has died, there is often a sense of pres-
ence, or of seeing or hearing the deceased.
Physical sensations might include mus-
cular weakness, fatigue, tightness in the
chest and throat, dry mouth, nausea, and
sensitivity to noise. There may be sleep
and appetite disturbances, social with-
drawal, sighing, searching, and crying,
restless overactivity, reminiscing, and
laughing, treasuring objects that belonged
to the deceased, or avoiding such
reminders.3
However it proceeds, the grief pro-
cess poses a challenge to human systems
at each level—through personal, inter-
personal, family, and caregiver systems.
Inherent in this process is the demand
for change and substantial potential for
growth—and/or decline. Loss disrupts
equilibrium, and subsequent readjust-

ments are multifaceted and complex
involving somatic, psychological, social,
cultural, spiritual, and historical compo-
nents. Practically speaking, this means
that besides somatic changes due to ill-
ness, one must be aware of a patient’s
grief-associated symptoms. The impact of
disease or loss on total functioning of a
patient or family system must be con-
sidered. How is self-concept affected?
Identity, expectations, and sense of the
future all may need adjustment. What
is—or was—the role of the patient in the
family system? This role may change.
There may be a loss of roles, of accus-
tomed activities, capabilities, and per-
sonal dignity. In a culture that strongly
emphasizes health and youth, disease
and demise are isolating.
Many people see suffering and loss
Bruce • Helping With the Grieving ProcessES34 • JAOA •
Supplement 7 • Vol 107 • No 12 • December 2007
as spiritually related. There may be a
feeling of being punished or forgotten
by the Diety, or of being purified and
strengthened. Since there is a strong con-
nection between spirituality and well-
being, it is important to allow or provide
for spiritual exploration and support
during grief. It is also important to ask
what personal history of losses provides

the context or foundation for this one.
What is the family context, community
context, or racial-ethnic context? What
“undigested” grief is there that will
become a part of the matrix for this new
experience?
Other contributing factors to the
grief process include suddenness versus
expectation of loss, causes and course of
the illness, and whether there is a sense
of hope and purpose through it all. Espe-
cially difficult is “ambiguous loss,” essen-
tially living with frozen grief, as in brain
injury, dementia, serious addiction, or
mental illness. Since the person being
lost is neither clearly absent nor clearly
present, it can be difficult for survivors to
know how to move through the grief.4
Major Models for Grief
Various models for the grief process have
been proposed and used over the past
half century as thanatology has devel-
oped as a field of study. Most notable
have been the works of Kübler-Ross5;
Bowlby6 and Parkes7; Worden8;
Wolfelt9,10; and Neimeyer.11
Kübler-Ross’s Five-Step
Paradigm for the Grief Process
Elisabeth Kübler-Ross, MD, psychiatrist
and internationally known thanatologist,
published her seminal study in 1969,
titled On Death and Dying.5 The cover to
the first edition included the explanatory

subtitle, “what the dying have to teach
doctors, nurses, clergy and their own
families.” The work was the result of a
seminar that began in 1965 at the Uni-
versity of Chicago Billings Hospital,
when four theological students
approached Kübler-Ross for assistance
in a research project on “the crisis of
death in human life.” Together they
determined that the best way to study
death and dying was to ask terminally ill
patients to be their teachers, through
observation and interview.
Kübler-Ross’s observations now
form the classically regarded five-step
paradigm for the grief process: denial,
anger, bargaining, depression, and accep-
tance. She described the five stages as
“coping mechanisms” that people go
through to deal with extremely difficult
situations.5 These stages were at times
overlapping or coexisting, but, in her
model, they are progressive. In addition
to these central stages, the model
included stage-bridging mechanisms of
partial denial and preparatory grief.
Included in the acceptance stage were
Freudian concepts of decathexis, or with-
drawal of emotional energy from the lost
object, and recathexis, or reinvestment of
that energy. In regard to the dying
patient, this withdrawal signaled the end
of the struggle to sustain bodily life and
the investment of energy in letting go
and moving on.5

Kübler-Ross further observed that
“the one thing that usually persists
through all these stages is hope.... It’s this
glimpse of hope which maintains them
through days, weeks or months of suf-
fering.”5 She defined hope as “the feeling
that all of this must have some meaning,
and will pay off eventually if they can
only endure it for a little while longer.”5
Interestingly, the patients that
Kübler-Ross interviewed showed the
greatest confidence in those physicians
who allowed them to express and main-
tain their hope, in whatever form.4 Even
with acceptance of a diagnosis of ter-
minal illness, one can hold hope of con-
tinuing to live to the end in a meaningful,
zestful way, relating to life, and being a
unique personality through the moment
of death.
Bowlby and Parkes’
Four Phases of Grief
British psychiatrists John Bowlby, MD,
and Colin Murray Parkes, MD, collabo-
rated on the grief process in the 1980s,
bringing together insights from Bowlby’s
“Attachment Theory”6 and Parkes’
studies of human information pro-
cessing.7 Together they reformulated
Kübler-Ross’s five stages into four phases
of grief, and observed that these stages
were not always linear but could recycle
through recollection, or some triggering

experience or anniversary reaction. One
who grieves can travel around and
around the process before emerging, so
sustained care giving is needed rather
than viewing grief as a series of pro-
gressive stages with a predictable and
orderly end.7
The initial phase of their model,
shock and disbelief, discards the term denial
with its pathologic connotations. Instead,
there is insight that the human organism
does what it needs to do to cope with
reality. Body, mind, and soul adjust to
the distressful situation by closing down
to protect and rebuild in small incre-
ments. Reality is set aside, in part, and
allowed slow entry into the self-system.
In this stage, there is a strong, but adap-
tive, need to withdraw, to be numb and
unresponsive.7
During the second phase, searching
and yearning,7 a person will attempt to
undo or retract the distressful reality with
thoughts such as “This couldn’t have
happened!” “Why this?” “Why us?”
“Why now?” “If only...!” The affect is
angry, agitated, and frantic.
The third phase, disorganization and
despair, represents full penetration of the
distress, and of facing the loss.7 Here,
one could hear statements such as “My
life is over. I just don’t care anymore. I

can’t go on.” There is depression, disor-
ganization, absentmindedness, and
apathy. These responses, normal signs
of separation distress in this phase of
grief, should be supported and not con-
fused with a pathologic state.
The final phase is that of rebuilding
and healing, in which the grieving person
will begin restructuring and reorganizing
to proceed.7 One begins to take on the
changes and move forward in life; the
loss is no longer defined in terms of the
self. Rather, the grieving one has a
renewed sense of identity, which goes
beyond—and is greater than—the loss.
The grieving person will have more
energy and sociability, and an ability to
view his or her grief in a larger perspec-
tive.
Worden’s Four Basic
Tasks for Adapting to Loss
J. William Worden, PhD, psychothera-
pist and researcher in the field of ter-
minal illness and suicide, holds academic
appointments at Harvard Medical School
Bruce • Helping With the Grieving Process JAOA • Supplement
7 • Vol 107 • No 12 • December 2007 • ES35
and the Rosemead Graduate School of
Psychology in California. He is also co-
principal investigator for Harvard’s Child

Bereavement Study. His research and
clinical work spanning 30 years has cen-
tered on life-threatening illness and life-
threatening behavior. His text, Grief Coun-
seling and Grief Therapy,8 grew out of this
project and his own clinical practice.
Worden views mourning—the adapta-
tion to loss—as involving four basic tasks,
the completion of which are essential for
a person and/or family system to return
to equilibrium and complete bereave-
ment by
� accepting reality of the loss,
� experiencing the pain of grief,
� adjusting to an environment in which
the deceased is missing, and
� withdrawing emotional energy and
investing it into another relationship.
These four undertakings need not
follow a specific order; they can be con-
current, cyclical, or overlapping, and the
grieving person will work on them with
effort until regaining balance.
Worden speaks of particular diffi-
culty with the fourth task. It is here that
grief most often remains unresolved, as
the mourner continues to hold onto a past
attachment rather than form new ones. In
doing grief therapy within this model, it
is important to facilitate emotional recon-
ceptualization of a lost love into memory
so that emotional space will be created
for new relationships. Worden’s expected
time frame for full resolution of grief is

1 to 2 years, a projected point where nat-
ural sadness of having loved and lost will
no longer have the initial wrenching
quality. If progress through these devel-
opmental tasks is arrested at some point,
the grief experience will become intensi-
fied such that the grieving person
becomes overwhelmed; a pathologic con-
dition then appears.8
Wolfelt’s “Companioning”
Approach to the Bereaved
Alan Wolfelt, PhD, a major voice in the
field of thanatology, is founder and
director of the Center for Loss and Life
Transition in Ft Collins, Colo (Figure); he
is known internationally as a grief edu-
cator and care provider.
Whereas previous models have
emanated from the modern perspective
that if we know what is wrong, we can
fix it, Wolfelt’s approach is much more
postmodern, that is, each person’s grief
experience is unique and no predictable
or orderly stages exist. The mourner is
the teacher, rather than the recipient of
another’s expertise; mourner and sup-
porter go together on a journey of dis-
covery.
Wolfelt’s approach is therefore much
more experiential and narrative; he
teaches that caregivers to the bereaved
should “companion,” rather than treat

those in grief. In his words,9
‘Companioning’ is about honoring the
spirit, being curious, learning from
others, walking alongside, being still,
listening with the heart, bearing wit-
ness to the struggles of others and
being present to their pain, respecting
disorder and confusion rather than
imposing order and logic. Compan-
ioning is about going to the wilder-
ness of the soul with another human
being; it is not about thinking you are
responsible for finding the way out.
“If you love, you will mourn,” is a
foundational understanding in Wolfelt’s
philosophy. Rather than viewing grief
as a disease state from which to seek
recovery, he sees the pain of loss as an
inherent part of life resulting from the
ability to give and receive love. Since
everyone is changed forever by their grief
journey, concepts like reestablishment,
recovery, and resolution are not adequate
to describe what needs to happen in grief.
One does not “get over it,” but learns to
live with it and reconcile oneself to it. In
Wolfelt’s grief process, one moves
toward the pain in order to walk through
it (vs work through it).
Wolfelt sees six central needs of grief
(cf Worden’s four central tasks8) that are
more experiential than task-oriented, and

with a more relational, tribal, systemic
view of the self. Four are familiar:
� to inwardly experience and outwardly
express the reality of loss through
mourning;
� to tolerate the pain of grief while
caring for oneself;
� to convert the relationship with the
lost person from presence to memory
(relocation of the relationship in the heart
of love versus decathexis or withdrawal);
and
� to develop a new self-identity based
on life without the person who died,
taking on new roles, and exploring pos-
itive aspects of oneself in the change.
Added to the process are
� to relate the experience of loss to a
context of meaning, telling a story about
the loss until it becomes “the story” that
makes some sense of it all, teaches some
lesson, or provides some doorway to
continuance; and
� to develop an understanding, en-
during support system that will provide
a strengthening brace while healing takes
place in the months and years ahead.
These are fellow human beings who will
companion the mourner and encourage
self-compassion whenever a normal
resurgence of intense grief occurs.10
Neimeyer’s Narrative and
Constructivist Approach
An important contribution to thanatology

comes from Robert A. Neimeyer, PhD,
professor of psychology at the Univer-
sity of Memphis in Tennessee. A prolific
author, theorist, and clinician in the fields
of psychology and bereavement, he has
� www.adec.org
Association for Death Education
and Counseling
(an interdisciplinary organization
formed to assist professionals and
lay people in the field of dying,
death, and bereavement)
� www.centerforloss.com
Alan Wolfelt’s organization
� http://cancernet,nci.nih.gov
National Cancer Institute
� www.aarp.org
American Association of Retired
Persons
(has useful self-help information
about grief)
� www.nhcpo.org
National Hospice and Palliative
Care Organization.
Resources
Figure. Useful Web sites.

conducted extensive research on the
topics of death, grief, loss, and suicide
intervention. He is currently working to
advance a more adequate theory of
grieving as a meaning-making process.
As a narrative-constructivist, Neimeyer11
approaches human experience from the
view that people co-construct reality
together, continually updating their per-
ception of it as they write and rewrite
their life stories in the center of their
beliefs; developing an ongoing sense of
identity, purpose and belonging.
Neimeyer elucidates six key realities influ-
enced by death, derived from construc-
tivist thought, namely:
� Particulars of a loss can validate or
invalidate one’s core assumptions about
how life should work, or they may
encompass a novel experience for which
one has no framework of assimilation.
We may try to interpret loss within our
own developed framework of beliefs,
but may be forced to create a new under-
standing of reality in order to proceed.
� Grief is idiosyncratic, both universal
and unique. As such, effective therapeutic
interventions will be client-led, with the
bereaved as the active locus of control
for proceeding.
� Grieving is active, affirming or recon-
structing a personal world of meaning

that has been challenged or ruptured by
loss. It is a period of decision making,
practically and existentially, not a time of
passive waiting through a series of emo-
tional transitions or stages.
� Emotions during grief are functional
and useful guides. The bereaved must
reconstruct a world that restores a sem-
blance of meaning, direction, and inter-
pretability to life. Emotional states hold
something important for us to learn in
this process, and should not be viewed as
dysfunctional conditions to be extin-
guished or overcome.
� The reconstruction of a grieving
person’s identity is a social process, at
once individual and regulated by soci-
etal and family norms.
� Grieving individuals adapt to loss by
restoring coherence to the narratives of
their lives, making sense of their own
great continuing story, putting the pieces
of the shattered puzzle back together like
any trauma survivor, finding a way to
fit what happened into a life that is not
only surviving but also ultimately, it is
hoped, thriving.11
Recent Research
It is interesting that in the present debate
on the validity and applicability of var-
ious grief and treatment models, a major
study recently conducted by Maciejewski
et al at Yale (the Yale Bereavement
Study12) in New Haven, Conn, asked,

What does typical grief look like? The
study concluded that the bereaved do
tend to report experiences in line with
the “Stage Theories” of Kübler-Ross,
Bowlby and Parkes, and Worden when
tracked during the first 24 months after
a loss, with several notable distinctions.
In particular, the study showed that not
depression, but yearning was the most
prominent negative emotion a mourner
experienced after a death. Acceptance
was the most common and steadily
increasing indicator throughout the
length of the study, rather than defining
a final stage of arrival.
Further observations were that dis-
belief decreased from a maximum at
1 month postloss, yearning peaked at
4 months, anger was utmost at 5 months,
and depression was highest at 6 months
following the loss. Acceptance increased
steadily throughout the 24 months post-
loss observation period.12
A co-author of the Yale Bereave-
ment Study, Holly Prigerson, PhD, has
been central in developing proposed cri-
teria for “prolonged or complicated grief
disorder” as a new diagnostic category to
be included for publication in the Diag-
nostic and Statistical Manual of Mental Dis-
orders Fifth Edition (DSM-V) now in devel-
opment for publication in 2012. In the
Yale Bereavement Study, negative cog-
nitive-emotional indicators for grief

began to decline after 6 months, sup-
porting Prigerson’s recommendation that
persistently severe, distressing, or dis-
abling signs of separation distress at more
than 6 months postloss be diagnostic of
the disorder. However, more than 50% of
the sample population for the study was
older than 65 years, mostly older widows
“with a fair amount of preparation for
their loved one’s death.” Those with
knowledge of a patient’s diagnosis of ter-
minal illness for at least 6 months prior to
the death were more accepting than those
who had less time to adjust to the new
reality. Bereaved parents and others suf-
fering from traumatic or violent losses
were excluded from the study and likely
would express a different set of norms.13
Diagnosing Complicated Grief
Prigerson et al14,15 propose a model for
diagnosing prolonged or complicated
grief in the presence of a diagnostic
cluster of at least 6 months’ duration,
including symptoms of separation dis-
tress, traumatic loss, and shattered
meaning.
Mardi Horowitz, MD, professor of
psychiatry at the University of California
in San Francisco, and her colleagues16
proposed a similar model, but one that
requires 14 months postloss before a
diagnosis can be made. Diagnostic cri-

teria from each model include specified
percentages of signs and symptoms
causing clinically significant impairment
in social, occupational, or other important
areas of functioning.17
Both diagnostic models are avail-
able online at www.redmh.org/research
/specialized/grief.html.
Important Issues
for Caregivers
The individual, intrapersonal experience
of grief is similar across cultures,18 though
bereavement practice can vary pro-
foundly. A grief reaction on the anniver-
sary of a loss, for example, seems to be
part of the circadian, somatic nature of
sorrow rather than purely culturally con-
ditioned. I observed this response in a
young child who had no coaching to
expect such a resurgence of grief at a par-
ticular time, and whose parents were
surprised by the anniversary, as well.
They had been out of the United States
without the possibility of contact with
their 6-year-old child for several weeks.
During that time, an important linking
object, a little bear he and his mother had
chosen together before the trip, had been
taken from him by someone in a fright-
ening and traumatizing way.
When the boy’s mother returned
and the child told her some of what had
happened, she sympathized with him

and together, they chose a bear as a sub-
stitute for the lost bear. The incident was
forgotten until exactly a year after the
loss of the first bear. The child came to his
mother in tears of grief over the bear. He
told her the traumatic details of the loss,
which he had never mentioned before,
but which had come into his conscious-
ness for review quite unexpectedly a year
later, with all its attendant feelings.
The ways in which a person
responds to—or expresses—grief feel-
ings are qualified by culture as well as
experience. A good question to ask in
caregiving is “What is required or
expected by the grieving person’s cul-
ture in this situation?”
Grief practices across cultures serve
an important purpose, and it is important
to honor them. Monica McGoldrick, PhD,
LCSW, director of The Multi-Cultural
Family Institute of New Jersey, in High-
land Park, has developed training on
ethnic patterns for the medical school
curriculum. McGoldrick, co-editor of the
text, in Ethnicity and Family Therapy,19 has
posed these questions for cross-cultural
sensitivity:

� Are certain types of death particu-
larly traumatic for this sociocultural
group?
� What rituals are prescribed for man-
aging the dying process and aftermath?
� What beliefs exist regarding what
happens after death?
� What emotional expressions are
appropriate in response to this loss? For
example, Puerto-Rican traditions such as
crying, screaming, and hysteria are
common, expected, and even respectful
ways of mourning at a funeral. In con-
trast, an American family of British
descent believes it is important not to
show grief in an outward display of emo-
tions, but to keep a “stiff upper lip.” In this
latter case, it is deemed “responsible” to
keep personal problems to oneself, and
not be “a bother” to anyone. Caregivers
unaccustomed to either of these two
extremes could misinterpret and label a
culturally normal response as “patho-
logic” in attempting to fix the problem.10
It will be helpful if caregivers know
when to be watchful for signs of pro-
longed or complicated grief. Perhaps the
patient or survivor held unrealistic expec-
tations about life and death; maybe a
support system was or is lacking. If the
illness or manner of death is stigmatized
(eg, from AIDS), or if death marks the
end of an ambivalent or abusive rela-
tionship, an individual may have trouble

with grief.
Prolonged dying also places a great
strain on caregivers, depleting their phys-
ical and emotional resources and pre-
disposing them to illness on the rebound.
Other questions about the circumstances
of the death that should be considered in
assessing grief include:
� Are substance abuse or other com-
pulsive behaviors present, or a history
of multiple or unexpressed losses? These
may be risk factors for complicated grief.
� Was there no choice about seeing the
body?
� Is litigation involved?
� Does the survivor experience con-
suming guilt or blame?
� Was the loss abrupt or traumatic or
both?
Research into traumatic loss indi-
cates that such grief can be prolonged,
pervasive, and debilitating without indi-
cating a psychiatric disorder.15 Grieving
survivors of trauma victims should be
reassured that the intensity of their feel-
ings is entirely normal and acceptable.
According to recent studies, most of those
who grieve need only time and sympa-
thetic company. However, long-lasting
grief in cases of shocking loss can
resemble a traumatic stress response, and
may respond to treatments recom-
mended for posttraumatic stress disorder

(PSTD) or depression.20
Family caregivers and survivors will
not be alone in experiencing the pain of
loss. Grief will impact health profes-
sionals caring for those who suffer and
die. Jeffrey Kauffman, LCSW,21 special-
izing in the treatment of grief and trauma,
writes about the professional caregiver’s
awareness of his or her own mortality:
One’s own denials and dissociations of
death anxiety in relation to oneself,
may, in reaction to the grief of others,
block empathy or open it up. Our own
grief is always there in some way in
our every encounter with the grief of
others. It may be both an impediment
and a means of empathetic connection
at the same time, but it is always there.
For each of us, as we approach the
work of supporting others in their grief
and facilitating the mourning process,
we approach a place which is spiritu-
ally and psychologically very pow-
erful, both healing and dangerous. The
caregiver should be prepared with self-
awareness and an openness to the vul-
nerability of self and other and to the
great spiritual and psychological
wounds that occur in grief.21
Basic issues intrinsic to the helping
professions—which grief will activate—
must be addressed.

First, there is the reality of attach-
ment and loss for anyone who is empa-
thetic. A healthcare professional may say
inwardly, “You’ve engaged me. I’ve
invested myself in you. Now you’re
leaving.”
Then, there can be the narcissistic
injury of, “My job was to heal you, but I
can’t, and that feels terrible.” Frustrated
altruistic strivings may include, “I’m in
this business to give life and to help
others, so my energies must go to the
living, not the dying.”
There may be personal issues that
are brought to the surface, or a crisis of
faith brought on by particular circum-
stances: “This one is too close to home!”
or “Why this, God?” It may be a matter
of grief overload, as observed in health-
care professionals working in hospice or
emergency trauma situations: “Now this
is just too much!”
© 2007 Dreamstime.com
Any of these natural responses
would lead healthcare professionals to
do exactly what the patient fears the most
and needs the least, that is, to withdraw

emotionally and physically, become curt
or perfunctory, and abandon bedside
manner. What can one do?
The following case scenario illus-
trates how grief counseling helped the
parents with three other children cope
during the terminal stage of one child’s
cancer, her loss, and the bereavement
process that followed the child’s death.
Case Presentation
A family of two parents and four children
had been struggling valiantly for several years
with treatment of one of their children for
brain cancer. Kendra (not her real name) was
an elementary school–aged child who, by
reason of an unrelated condition, had been
both heroically independent and needfully
more dependent on her parents throughout
her young life. This situation set the stage
for bitter irony at her prognosis of terminal
cancer and acute separation distress after her
death.
Kendra’s siblings each had their own
unique and special relationship with her. The
oncologists waited to determine the child’s
eligibility for hospice care until every pos-
sible hope had been exhausted, as the parents
would have desired and expected. Kendra
was considered to be just a few days away
from death when she came on hospice ser-
vice. The parents—not wanting to upset
either Kendra or her siblings with anticipatory
grief—were distressed about whether and

how to tell their other children the truth about
their sister’s critical status. A hospice bereave-
ment counselor was called in as part of the
interdisciplinary team to assist them in coping
and decision making.
Because of the parents’ reluctance to
speak of this coming crisis, the counselor sug-
gested that they would build trust and reduce
their other children’s isolation and panic if
they would speak to them in a loving, con-
taining, age-appropriate, but genuine, manner
before Kendra began actively dying. The par-
ents were unwilling to make this choice and
expressed the fear that they would not be able
to handle the strong emotions that might
ensue.
The counselor respected the parents’
choice but proposed that they think about
what it would be like if they were to speak
with their other children about the reality.
The counselor invited Kendra’s parents to
begin to say some of the words they might
say. They parents did this hypothetical role
play with the counselor; eventually, they did
use the thoughts they had rehearsed to shep-
herd their family through Kendra’s death sev-
eral days later. Different members of the hos-
pice team kept vigil with the family
throughout the dying process.
The counselor stayed connected to the
family for 2 years after Kendra’s death for
bereavement counseling in the form of “grief

walks” in the beautiful, natural landscape
near where the patient was born. In assessing
the parents’ coping strategies, it was clear
that physical activity—”being able to move
when you just feel like running away”—
would both facilitate discussion during the
walk. It was also needed as a relaxant to set
the stage for the difficult emotional work of
grief that occurred during the last segment of
each session.
Opening Discussion
It is important for healthcare profes-
sionals dealing with grief and loss to
explore their own “grief landscape”.
They should ask themselves,
� What are my issues with loss at this
point in my life?
� What is my history with grief?
� What losses have impacted me, which
still exert pressure on my ability to cope?
� What does my belief system tell me
about the meaning of suffering, of life,
and of death?
All this exploration can take time,
but it is worthwhile to assess periodi-
cally, to observe and acknowledge losses,
pressures, and unreconciled grief in one’s
life. In fact, it can be encouraging to look
back from a new perspective year by
year and see how things change. Those
who develop a measure of comfort with
life and death issues—and learn how to
live with their own grief and losses—
will become more capable of adminis-

tering effective, life-giving care, even to
someone who is dying. Their person and
presence will be able to instill confidence
and hope that is genuine and based in
reality.
What are some of the major con-
cerns of consciously dying persons?
Often, they have concern or even guilt
regarding those whom they will leave
behind. Dying persons have fear of
� losing control
� loss of dignity
� loss of self-determination
� ceasing to be
� pain
� being alone
� the unknown
Responding to these concerns
requires that physicians and caregivers
maintain an attitude of empathy, atten-
tiveness, and respect, as well as a will-
ingness to take time, be present, and
listen. Nonverbal communication is
important. Healthcare professionals
should sit down and invite sharing: “You
may have some questions.... Tell me your
thoughts on this matter.... I’d like to hear
your concerns.... You must wonder if
you’re going to get well.”
Ira Byock, MD, past president of the
American Academy of Hospice and Pal-
liative Medicine, has written a practical

and compassionate guide to Dying Well:
Peace and Possibilities at the End of Life.22
The appendix contains many examples of
questions that family members or
patients may want to ask and insightful
responses through which the healthcare
professional can open up a helpful con-
versation.
What Do We Need
During Grief?
Without a doubt, patient, family, and
healthcare professionals share some of
the same needs when faced with the grief
process. Healthcare professionals need
time alone and time with others to feel
and understand their own losses. They
need rest, relaxation, nourishment, and
diversion to be replenished from the
exhaustion of grief. They need a sense
of security, trust, and hope in the future,
gained by experiences of being cared for.
Healthcare professionals need that which
will give impetus and direction to life
when it seems to be without meaning.
They need lightheartedness, simple plea-
sures, and humor, which provide bal-
ance and relief from stress. Metcalf and
Flible23 provide a helpful resource along
these lines.
Finally, healthcare professionals can
benefit from access to the transcendent or
spiritual realm of life. As Byock
observed22:

It is a paradox of dying that a person
can seem to grow strikingly in the
realms of spirit and soul as the phys-
ical self dramatically shrinks.... The
contemplative place of prayer or med-
itation can provide a place of safety
and distance—not from, but within,
the experience. This tender vulnera-
bility [of spiritual composure and
openness] seems a prerequisite for the
deepest tasks of inner development.
In the words of the Ancients:
“Hear my cry, O God; attend to my
prayer.
From the ends of the earth I will cry to
you,
When my heart is overwhelmed;
Lead me to the rock that is higher than
I.”24
So we fix our eyes not on what is
seen, but on what is unseen. For what is
seen is temporary, but what is unseen is
eternal.25
Comment
Bereavement is a multifaceted process,
posing a challenge to the patient-family
system in interlocking dimensions—per-

sonal, social, physical, practical, emo-
tional, and spiritual—with imperious
demands for change. The grief process
carries the potential for either decline or
growth in the health and well-being of
any of those involved. Physicians who
are both educated about the grief pro-
cess and willing to assist dying patients
and their families beyond just prescribing
therapeutic regimens will certainly
ensure a more healthful closure to a sad
but normal process of life.
References
1. Sprang G, McNeil J. The Many Faces of Bereave-
ment: The Nature and Treatment of Natural Trau-
matic and Stigmatized Grief. Washington, DC; Psy-
chology Press; 1995.
2. Aulino F, Foley K. The Project on Death in
America. J R Soc Med. 2001;94:492-495. Available
at: http://www.pubmedcentral.nih.gov/arti-
clerender.fcgi?tool=pubmed&pubmedid=11535761.
Accessed November 30, 2007.
3. North Central Florida Hospice, Inc. 1996-2000.
Available at: http://hospicecares.org/hands/norm-
grief.html.
4. Harvard Mental Health Letter. November
1999:4-6.
5. Kübler-Ross E. On Death and Dying. New York,
NY: Macmillan; 1969.
6. Bowlby J. Attachment and Loss: Loss, Sadness

and Depression, Volume 3. New York, NY: Basic
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7. Parkes CM. Bereavement: Studies of Grief in
Adult Life. ed 3. Madison, Conn: International Uni-
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8. Worden JW. Grief Counseling and Grief
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titioner. New York, NY: Springer Publishing Com-
pany; 1982.
9. Wolfelt AD. “Companioning Philosophy.” Fort
Collins: Colo: Center for Loss Educational Seminars
for Bereavement Caregivers; 1999.
10. Wolfelt AD. Understanding Grief: Helping
Yourself Heal. Fort Collins, Colo: Accelerated Devel -
opment; 1992.
11. Neimeyer RA. Meaning Reconstruction and
the Reality of Loss. Washington, DC: American Psy-
chological Association; 2001.
12. Maciejewski PK, Zhang B, Block SD, Prigerson
HG. An Empirical examination of the stage theory
of grief [published correction in JAMA.
2007;297:2200]. JAMA. 2007;297:716-723. Avail-
able at: http://jama.ama-assn.org/cgi/content
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13. Dana-Farber Cancer Institute. Study confirms
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/abo/news/press/2007.

14. Prigerson HG, Shear MK, Jacobs SC, Reynolds
CF, Maciejewski PK, Davidson JR, et al. Consensus
criteria for traumatic grief. A preliminary empirical
test. Br J Psychiatry. 1999;174:67-73.
15. Prigerson HG, Jacobs SC. Traumatic grief as a
distinct disorder: a rationale, consensus criteria,
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16. Horowitz MJ, Siegel B, Holen A, Bonanno GA,
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17. Gibson LE. Complicated grief: a review of cur-
rent issues. Research Education Disaster Mental
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Accessed November 16, 2007.
18. Ritsher JB, Neugebauer R. Perinatal Bereave-
ment Grief Scale: distinguishing grief from depres-
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19. McGoldrick M, Pierce JK, Giordano J, eds. Eth-
nicity and Family Therapy. New York, NY: Guilford
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20. Shear MK, Frank E, Foa E, Cherry C, Reynolds
CF III, Vander Bilt J, Masters S. Traumatic grief
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158(9):1506-1508. Available at: http://ajp.psychia
tryonline.org/cgi/reprint/158/9/1506. Accessed
November 16, 2007.
21. Kauffman J. Guidebook to Helping Persons
With Mental Retardation Mourn. Amityville, NY:
Baywood Publishing Company, Inc; 2005.
22. Byock I. Dying Well; Peace and Possibilities at
the End of Life. New York, NY: Riverhead Books;
1997
23. Metcalf CW, Felible R. Lighten Up; Survival
Skills for People Under Pressure. Cambridge, Mass:
Perseus Books; 1992.
24. Psalm 61:1-2. The Holy Bible, The New King
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25. 2 Corinthians 4:18. The NIV Study Bible. Grand
Rapids, Mich: Zondervan Corporation; 1995.

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