The course of death and dying has changed tremendously in the past.docx

The course of death and dying has changed tremendously in the
past few decades because of social and technological advances.
Increases in average life expectancy due to advances in medical
science and technology (National Center for Health Statistics,
2010) have influenced our beliefs and attitudes about life and
death. The course of illness and dying has changed; at one time,
the onset of illness and subsequent death from certain illnesses
was sudden and rapid, but now the typical death may be more
prolonged. The place where death occurs has moved from the
home or community to the hospital, nursing home, or
institutional setting. These changes have posed enormous
challenges in end-of-life and palliative care.
PALLIATIVE CARE
Palliative care is an interdisciplinary care model that focuses on
the comprehensive management of physical, psychological, and
existential distress. It is defined as “the active total care of
patients whose disease is not responsive to curative treatment.”
Control of pain and other symptoms and psychological, social,
and spiritual problems is paramount. “The goal of palliative
care is the achievement of the best possible quality of life for
patients and their families” (World Health Organization [WHO],
1990, p. 7). Palliative care aims to improve the patient's quality
of life by identifying physical, psychosocial, and spiritual
issues while managing pain and other distressing symptoms.
Palliative care “affirms life and regards dying as a normal
process; is applicable early in the course of illness, in
conjunction with other therapies that are intended to prolong
life, such as chemotherapy or radiation therapy, and uses a team
approach to address the needs of patients and their families,
including bereavement counselling, if indicated” (WHO, 2004,
p. 3).
The palliative care model applies throughout the entire course

of illness and attempts to address the physical, psychosocial,
and spiritual concerns that affect both the quality of life and the
quality of dying for patients with life-limiting illnesses at any
phase of the disease. It includes interventions that are intended
to maintain the quality of life of the patient and family.
Although the focus intensifies at the end of life, the priority to
provide comfort and attend to the patient's and family's
psychosocial concerns remains important throughout the course
of the illness. In the model's ideal implementation, patient and
family values and decisions are respected, practical needs are
addressed, psychosocial and spiritual distress are managed, and
comfort care is provided as the individual nears the end of life.
Palliative medicine is the medical specialty dedicated to
excellence in palliative care. Palliative care specialists,
including social workers, typically work on teams and are
involved when patients’ disease is advanced, their life
expectancy is limited, and medical and psychosocial concerns
become complex and more urgent. In practice, these problems
often are related to uncontrolled symptoms, conflicted or
unclear goals of care, distress related to the process of dying,
and increasing family burden. The social worker can educate the
family about expected symptoms and their management, clarify
information about medications and medical procedures,
facilitate communications with the health-care team, help the
family make decisions about practical and financial changes in
the family structure, normalize their emotional experiences, and
teach them effective coping skills.
HOSPICE
The emphasis of hospice care is on comfort at the end of life
through control of pain and other symptoms. Rather than relying
on curative interventions and technology, it returns the focus to
natural approaches in the care of dying individuals. Hospice
focuses on caring, not curing, and in many cases is provided in
the patient's home. Hospice care also is provided in freestanding

hospice centers, hospitals, and nursing homes and other long-
term care facilities. Hospice services are available to patients of
all ages, religions, races, and illnesses. Hospice care is covered
under Medicare, Medicaid, most private insurance plans, health
maintenance organizations, and other managed care
organizations (National Hospice and Palliative Care
Organization, 2010).
The hospice movement in the United States began in the 1960s
when Dame Cicely Saunders, a British physician, introduced the
concept of hospice at Yale University. She came to the United
States to introduce the approach to symptom relief for dying
individuals and discussed how St. Christopher's inpatient
hospice, the first modern hospice, was established in London.
Saunders presented the concepts of hospice to medical and
nursing faculty and students at Yale. Florence Wald, dean of the
Yale School of Nursing, created a multidisciplinary group at
Yale-New Haven Hospital to look into changing the way that
institution cared for dying patients, modeling their care after St.
Christopher's approach. In 1975, the first hospice in the United
States opened in Connecticut due to the work of this small
group of individuals (Saunders, 1999).
Significant barriers to effective end-of-life care exist and
include patients’ and families’ attitudes about death and dying,
inconsistent communication between patients and the health-
care team, insufficient training of health-care providers,
physicians’ inexperience with providing care, lack of access to
care, and inconsistent reimbursement. The National Academies
of Science, through its Institute of Medicine (IOM), produced
an important report, “Approaching Death: Care at the End of
Life” (Field & Cassell, 2002). Among its recommendations were
these:
Reliable and skillful supportive care should be provided to
patients and families facing the end of life.

Health-care professionals should know and use effective
interventions to prevent and relieve pain and other symptoms.
Palliative care should be recognized as a defined area of
expertise, education, and research.
The public should be educated about end-of-life care and
advance care planning.
Tools should be developed for improving patients’ quality of
life, and health-care organizations should be required to use
them.
Medical education should be modified to ensure that relevant
attitudes, knowledge, and skills regarding end-of-life care are
represented and included in teaching.
Research should be undertaken to strengthen the knowledge
base of end-of-life care.
Although efforts have been made to implement these
recommendations to improve existing care at the end of life,
progress has been slow.
ANTICIPATING THE END OF LIFE
Individuals at the end of life may experience many symptoms
that can be distressing to them and their caregivers. Although
the dying process is not consistent across individuals and
families, some physical, physiological, and emotional changes
can be predicted during the end of life. Advanced stage of
illness can result in symptoms such as difficulty breathing,
insomnia, loss of appetite, pain, nausea, and constipation.
Patients also may experience heightened anxiety, depression,
anger, or emotional withdrawal. Understanding the nature of the
symptoms most frequently experienced by dying people and
knowing how to help patients and their significant others cope
are critical to effective end-of-life social work practice. The
social worker can take the opportunity to educate patients and
families about the management of these physical symptoms and
psychological responses.
During this important period of care, the social worker can act

as a guide to help the patient and family prepare for the end of
life. Knowing what to expect is important for social workers so
they can help manage patient and family needs before, during,
and after death. Social workers provide anticipatory guidance
and expert psychosocial care to promote physical and
psychological comfort for the dying person and for family
members.
INTERDISCIPLINARY TEAMWORK
Individuals at the end of life often move between different
health-care settings–from home to acute or long-term care
facilities, outpatient or inpatient treatment (either curative or
palliative), home health care, and hospice settings–as their
disease progresses. They may receive care from several
different physicians, nurses, and other health-care professionals
during the course of their illness. Coordinating all necessary
care during moves from one setting to another presents
considerable challenges to patients, families, and health-care
providers. Several different organizations and payment sources
may be involved that may present barriers to optimal end-of-life
care.
The involvement of an interdisciplinary palliative or hospice
care team is an excellent solution to care coordination
problems. These typically include:
Patient
Patient's family or caregiver
Palliative care or hospice physician
Patient's personal physician
Nurses
Social workers
Clergy/pastoral counselors
Pharmacists
Home health aides
Trained volunteers

Physical, occupational, and speech therapists, if needed
Interdisciplinary teams are common in both hospice and
inpatient palliative care settings. The team meets on a regular
basis to discuss the patients in their care and to develop
individualized care plans that focus on each patient's well-being
and need for pain management and symptom control. To varying
degrees, private and public insurance companies pay for end-of-
life care services for patients who need them, such as
medication and treatments, medical equipment and
miscellaneous procedures, and tests necessary to provide
comprehensive comfort care. Comprehensive care can include
nursing, physician, and social work services along with
homemaker (e.g., light housekeeping and meal preparation) and
personal care (e.g., bathing and dressing) services.
COMMUNICATION: TALKING ABOUT DEATH AND DYING
Patients, families, and social workers may be influenced by
misconceptions about death and dying. They may believe that it
is depressing to talk about death or that dying patients and
families want to talk only about positive things. They may think
that talking about dying will make patients and families upset
and angry, that individuals do not always know that they are
dying, or that dying children do not know how to communicate
their concerns and fears, for example. These myths and
misconceptions often impede the ability to communicate
effectively with patients and their significant others. To
communicate clearly at the patient's end of life, social workers
must focus on providing clinical care that supports the patient
and underlying family values and meanings. Effective
communication is critically important to understanding the
experiences of others.
Social work traditionally has emphasized therapeutic
communication with active listening. For effective
communication with patients and caregivers facing the end of
life, the first and most important skill that all social workers

must develop is listening. Being fully “present” with another
person is essential to effective communication. Asking
questions or soliciting comments requires truly listening to
responses. Listening involves paying attention not just to the
words spoken but to all other verbal and nonverbal cues that are
communicated simultaneously, no matter how subtle. Much
information can be gained by listening to language content and
style, choice of words, pauses, silences, body posture, mood,
and facial expressions.
Open-ended questions are useful in gathering information from
the patient and family. In contrast to closed-ended questions
(which only allow yes, no, or another fixed response), asking
open-ended questions provides an opening or invitation for
patients and families to share information that is important to
them. Gaining an understanding of the patient's concerns and
style of communication enables social workers to provide the
information the patient and family desire in a manner that they
can understand (Byock, 1998). Rather than asking closed-ended
questions, the social worker can ask questions that will elicit
more information, such as “Can you tell me what you
understand about the changes in your loved one's condition?”
Reflective statements also help to clarify the social worker's
and the patient's understanding. An example of a reflective
statement is “What I heard you just say is _____________. Is
this correct? Is that what you intended?”
The ability to make empathic statements, demonstrating an
awareness of and sensitivity to another's feelings, thoughts, and
experiences (without having the same feelings, thoughts, and
experiences of another), is easy for some and difficult for
others, but it is a simple skill that can be learned and practiced.
Listening to the patient and family, sharing reflective comments
about the difficulty of the situation with them, acknowledging
their fears and apprehensions, showing concern and looking into
their eyes if appropriate are all simple actions that communicate

understanding of the patient's experience. Additional techniques
for gathering information can be found in Chapter 10 in this
book.
Communicating with a child who is dying is a special challenge
for families and health-care professionals. The death of a child
is a unique tragedy, and adults, including social workers, may
feel a profound need to protect and nurture the child and
themselves against the loss, pain, and suffering inherent in the
dying process. For these and many other reasons,
communicating with dying children is difficult, and the
resulting discomfort may prevent a social worker from
exploring the important needs and concerns of children and
their parents.
END-OF-LIFE CARE CONCERNS RELATED TO A DYING
CHILD
Social workers are well equipped to help prepare parents and
families to meet the emotional needs of a dying child. Parents
and family members are faced with many issues, including
concern that they may not be providing care as well as the
health-care team in the hospital. They need to know that they
are doing all that they can to care for the dying child.
It is important that the personal and professional challenges of
the individual social worker are addressed in caring for
terminally ill children and their families. When this is done,
social workers are better able to offer support to other members
of the health-care team. Health-care professionals, especially
physicians, often find it extremely difficult to tell parents that
there is no longer any effective cure-oriented treatment for their
child. However, if parents are supported in discussing treatment
focused on the end of cure with providers and the need to move
to comfort (palliative) care, most end-of-life care providers may
be better able to communicate more directly and effectively.
The key for the social worker is to recognize the critical role of

encouraging and supporting parents in expressing their true
feelings, concerns, and goals.
Children are never too young to be told that they or someone
close to them is dying (Silverman, 1999). Dying children often
know they are dying. Failing to acknowledge death creates a
barrier between the child and the adults who are caring for her.
Sick children have a common fantasy that they are responsible
for their own illnesses; being sick can be interpreted as
punishment. Many children who choose not to discuss painful
feelings may be trying to protect their parents and siblings from
further emotional pain. In the absence of honest discussion,
silence only reinforces this and other misconceptions that the
child and his or her siblings create. It isolates the child and
limits the sharing needed for coping with overwhelmingly
difficult experiences. Dying children experience feelings similar
to dying adults: anxiety, fear, loneliness, and depression as well
as hope and love. Children need to know that they are not
responsible for their illnesses. Sharing information in a way that
is cognitively and developmentally appropriate is essential.
Dying children of any age, as well as their siblings, have the
capacity to communicate their concerns clearly. The ways
children communicate depend on their age and developmental
stage. Verbal language must be adapted to a conceptual level
and vocabulary that the children can understand. Children may
express their fears, worries, or concerns directly, indirectly, or
symbolically. They can communicate in many ways other than
direct conversation. Music, art/drawing, drama/storytelling, and
play are some expressive therapies that can be used to foster
effective communication with children.
SPIRITUALITY
Facing death often forces individuals to consider spiritual or
existential issues that can be central to end-of-life care.
Spirituality can be a profound resource for coping with the

challenges of all aspects of life and death. Social workers in
end-of-life practice must be sensitive to these concerns in their
patients and be willing to assist with their spiritual
explorations.
As defined by the Merriam-Webster Dictionary (2004), religion
is “the service and worship of God or the supernatural,” “a
commitment or devotion to religious faith or observance” or a
“personal set or institutionalized system of religious attitudes,
beliefs, and practices.” In contrast, spirituality is defined as a
sensitivity or attachment to religious values, the quality or state
of being spiritual. Spirituality is related to the human spirit as
opposed to material or physical things. Definitions of religion
and spirituality can be found in the literature discussing the
integration of spirituality and mental health practices.
Mauritzen (1988) defines spirituality as
the human dimension that transcends the biological,
psychological and social aspects of living. It is the “agent” for
the integration a person's identity and integrity. In very general
terms the spiritual dimension is the “agent” for an individual's
existence as a person. (pp. 116–117)
Constructing a universal definition of spirituality, however, is
difficult. It is important to be aware of the patient's and family's
spiritual belief system; awareness and appreciation of a patient's
spiritual orientation is essential to end-of-life care. Impending
loss and the reality of death may shake people's spiritual beliefs
and may leave them feeling angry or hopeless. For believers and
nonbelievers, atheists or agnostics, the need to make sense of
impending death is central to a person's struggles regarding
meaning at the end of life.
Working in end-of-life care also may raise spiritual issues for
the social worker. Witnessing the suffering of others or coping
with the stress of working with dying individuals and their

families may challenge the social worker's basic religious or
spiritual beliefs. It may require the professional to deal with
countertransference issues related to suffering and death (Katz
& Johnson, 2006). Before social workers can help with these
existential concerns, they must understand their own spirituality
and religious beliefs and the influence of these beliefs on their
professional and personal lives. When patients and caregivers
express religious and spiritual concerns, the social worker's role
is to listen so that she can help them find ways to address their
needs.
DIVERSITY AND HEALTH DISPARITIES IN END-OF-LIFE
CARE
All individuals’ life experiences contribute greatly to the
complexity and uniqueness of the end-of-life issues that we all
face. These experiences, as much as anything, shape our desires
and beliefs about health, illness, death, and dying. The
Diversity Committee of the Last Acts Coalition (2001)
advocates recognition, acceptance, and support of its
recommendations concerning individuals’ experiences with
race; historical oppression; war and its aftermath; cultural,
religious, and spiritual practices; affectional orientation;
discrimination; and poverty. The true meaning of diversity
(especially as it affects the end of life) is as much about these
unique, view-shaping experiences as about the narrower yet
more common concept that focuses on ethnicity or religion
(Last Acts Coalition, 2001, p. 3). Death and dying among
members of different racial or ethnic groups and disadvantaged
persons can pose tremendous challenges to social workers.
Cultural and economic factors play a significant part in health
care, health-care decision making, and end-of-life experiences.
Health care is less accessible to disadvantaged individuals,
including people of color, immigrants, older individuals,
children, women, the poor and uninsured, and those who are in
institutions (i.e., nursing homes and prisons) (Smedley, Stith, &
Nelson, 2002).

Because of group differences in health, the U.S. Congress
requested a report from the IOM. Disparities consistently were
found across disease areas, clinical services, and clinical
settings (Smedley et al., 2002). The focus of the IOM report
was on conscious and unconscious discrimination or bias and its
effect on health-care delivery. The IOM's general
recommendation was to increase awareness of disparities among
the general public, key stakeholders, and health-care providers.
The report provided specific recommendations for critical areas,
including patient education and empowerment, cross-cultural
education in health professions, legal, regulatory, and policy
interventions, and health system interventions.
Communication between health-care provider and patient is
vitally important to effective end-of-life care. A patient's
understanding of his life-limiting illness will affect the course
of his palliative care. Health-care professionals must be aware
of subtle cultural variations in language, verbal and nonverbal
communication, and expressions of distress (van Ryn & Burke,
2000). They must be able to comprehend the effects of ethnicity
and spiritual beliefs on the daily lives of patients and families.
Culture influences what is considered a health problem, how
symptoms are expressed and discussed, how health-care
information is received, what type of care should be given, and
how rights and protections are exercised (see Chapter 10 this
book). In addition, health-care decision making is influenced by
demographic factors, such as level of education, other
socioeconomic status (SES) factors, geographic region (urban,
rural), and time spent in the United States.
Kleinman (1988) proposed obtaining a patient's or caregiver's
explanatory model of illness at any stage of the disease
continuum by asking a series of questions designed to elicit
their understanding of the situation (p. 42):

What do you call the problem?
What do you think caused the problem?
Why do you think it started when it did?
What do you think the sickness does? How does it work? How
does it affect your body?
How severe is the sickness? Will it have a long or short course?
What care do you desire? What are the most important results
you hope to get from your care?
What are the chief problems the sickness has caused?
What do you fear most about the sickness?
The need to provide culturally competent care has been
emphasized in many arenas, that is, to respect and maintain
sensitivity to issues related to an individual's culture, race,
gender, sexual orientation, and SES while providing optimal
end-of-life care. In 2001, the National Association of Social
Workers (NASW) developed Standards for Cultural Competence
in Social Work Practice. NASW defines cultural competence as
the process by which individuals and systems respond
respectfully and effectively to people of all cultures, languages,
classes, races, ethnic backgrounds, religions, and other diversity
factors in a manner that recognizes, affirms, and values the
worth of individuals, families, and communities and protects
and preserves the dignity of each. (p. 11)
The standards address these areas: ethics and values, self-
awareness, cross-cultural knowledge, cross-cultural skills,
service delivery, empowerment and advocacy, diverse
workforce, professional education, language diversity, and
cross-cultural leadership.
ADVANCE DIRECTIVES
Advance directives are written documents completed by an
individual that specify treatment preferences for health-care
decision making, particularly about end-of-life care and whether

to use life-sustaining treatment. They provide an avenue for
individuals to make known their wishes about end-of-life
treatment. The most common advance directives are the health-
care proxy (durable power of attorney for health care) and
living will.
The Patient Self-Determination Act has done much to increase
the use and awareness of advance directives. It was signed into
law in November 1990 and became effective in December 1991
(Federal Register, 1991). The act is applicable in all 50 states.
The law requires that all facilities receiving Medicare or
Medicaid reimbursements ask newly admitted patients if they
have health-care directives in place, provide a written
explanation of the state's law on health-care directives, and
provide an explanation of the hospital's policies in enforcing
them. Health-care facilities also are required to record patients’
health-care directives as part of their medical records. In
addition, those facilities must educate staff and the community
they serve about advance directives and ensure that patients are
not discriminated against, whether they have an advance
directive or not. Social workers can initiate direction and
leadership in implementing this education.
A durable power of attorney for health care involves the legal
appointment of an individual to speak for a person should that
person become decisionally incapacitated. Multiple types of
durable power of attorney are available, covering business,
financial, or health-care decisions. The purpose of legally
appointing a person as a health-care proxy is to ensure that an
individual's wishes are followed in the event she is not able to
make her own decisions. The person appointed as proxy acts to
ensure that health-care providers know of those wishes and can
advocate for their enforcement. The person named as an
individual's health-care proxy should be someone the individual
trusts and someone with whom she feels comfortable in
discussing her wishes. The person appointed to oversee an

individual's health-care wishes could be a spouse or partner,
relative, or close friend. An individual serving as a proxy
should be aware of state regulations or variations regarding
advance directives. In addition, that person must be aware that
he or she may have to fight to assert the patient's wishes in the
event of a disagreement with the health-care team or with other
family members.
A living will is a directive to a physician and health-care team
that states a person's wishes about what life-prolonging
treatment should be provided or withheld should he or she lose
the ability to communicate those wishes. Life-prolonging
therapies include mechanical ventilation, blood transfusions,
dialysis, antibiotics, and artificially provided nutrition and
hydration. A living will should be viewed as a way to guide a
physician to provide medically appropriate care in keeping with
the patient's wishes.
Any adult with decision-making capacity can complete an
advance directive. Directives must be completed by the
individual to whom the directive applies (i.e., a relative cannot
complete an advance directive for the patient even though he or
she may be the health-care proxy). Advance directives can be
rescinded at any time for any reason. They should be properly
signed and witnessed, but a lawyer is not required to complete
or rescind a valid advance directive. The patient should retain
copies of the directive and also provide copies to the designated
proxy and to appropriate health-care providers. Advance
directives are used more frequently by White, middle to upper
SES individuals than by individuals from lower SES or ethnic
or racial minorities. Social workers may need to be proactive in
educating disadvantaged persons about the value of advance
directives and help them with end-of-life care planning.
Research suggests that many ethnic or racial minority groups in
the United States fear being denied beneficial treatment at the
end of life more than they fear receiving excessive therapy and

therefore are less likely to complete an advance directive
(Crawley, Marshall, Lo, & Koenig, 2002).
Social workers should discuss advance directives with each of
their patients. They can help educate patients and families on
the uses and benefits of advance directives and advocate for
their choices. They can help patients complete an appointment
of a health-care agent and a living will; ensure that this
information is recorded in the patient's medical record;
encourage the patient to inform the designated proxy of his
wishes; and, if requested, help the patient discuss his wishes for
end-of-life care with the designated proxy. A Consumer's Tool
Kit for Health Care Advance Planning is available for
downloading at the American Bar Association Web site
(www.americanbar.org/groups/law_aging/resources/consumer_s
_toolkit_for_health_care_advance_planning.html). Advance
directives for each state and information about advance care
planning also are available from the National Hospice and
Palliative Care's Caring Connections Web site
(www.caringinfo.org/i4a/pages/index.cfm?pageid=1).
UNDERSTANDING LOSS
Individuals and families facing end-of-life issues …
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Life-Sustaining Treatment Decisions: A Social

Work Response to Meet Needs of Health Care
Surrogates
Julia W. Buckey & Neil Abell
To cite this article: Julia W. Buckey & Neil Abell (2010) Life-
Sustaining Treatment Decisions: A
Social Work Response to Meet Needs of Health Care
Surrogates, Journal of Social Work in End-of-
Life & Palliative Care, 6:1-2, 27-50, DOI:
10.1080/15524256.2010.489221
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PEER-REVIEWED ARTICLES
Life-Sustaining Treatment Decisions: A Social
Work Response to Meet Needs of
Health Care Surrogates
JULIA W. BUCKEY
University of Central Florida, Orlando, Florida, USA
NEIL ABELL
Florida State University, Tallahassee, Florida, USA
Surrogates must possess essential patient information prior to
legitimately exercising legal and moral obligations to act on
patients’ medical care preferences. This descriptive, in vivo
study
examined factors influencing surrogate and proxy decisions
(N ¼ 132) following life-sustaining treatment decisions. Patient
communication and self-efficacy variables accounted for
approxi-
mately 38% of the variance in surrogates’ perceptions of
benefits=
barriers associated with decision making. Guided by patients’
advanced communication, respondents (97.8%) expressed high
self-reliance and significant appreciation of benefits associated
with their decisions. Clarifying surrogates’ and providers’

under-
standing of patient care preferences during ICU=CCU admission
may facilitate better adherence to patient wishes.
KEYWORDS end-of-life care, health care proxy, health care
surrogate, Health Care Surrogate Preferences Scale, life-
sustaining
treatment decisions
In nearly 80% of the 2.5 million deaths that occur in U.S.
hospitals each
year, surrogates make 70–90% of the decisions to withhold or
withdraw
life-sustaining treatment from critically ill patients in the
intensive care
unit (ICU; Mcgee, 2000; Prendergast & Luce, 1997; Swigart,
Lidz, Butterworth,
Received 17 January 2010; accepted 22 April 2010.
Address correspondence to Julia W. Buckey, PhD, ACSW,
University of Central Florida,
HPA1 Room 255, P.O. Box 163358, Orlando, FL 32816, USA.
E-mail: [email protected]
Journal of Social Work in End-of-Life & Palliative Care, 6:27–
50, 2010
Copyright # Taylor & Francis Group, LLC
ISSN: 1552-4256 print=1552-4264 online
DOI: 10.1080/15524256.2010.489221
27

& Arnold, 1996). Therefore, surrogates potentially influence
nearly 1.5
million end-of-life treatment decisions per year. As the number
of older
people continues to grow, more and more Americans will likely
experience
this decision-maker role at some period during their lifetime.
An overall lack of advanced surrogate knowledge of patient care
preferences complicates surrogate decision making. Surrogates
better
understand what is important to patients at the end of life when
they have
had detailed discussions with them. However, limited awareness
about
specific treatment choices and a lack of understanding of
surrogate role
requirements have remained largely unaddressed in prior
examinations of
surrogate and patient communications (Engelberg, Patrick, &
Curtis, 2005;
Gutheil & Heyman, 2005; Truog et al., 2001). Although
differences often
exist between what patients and their surrogates deem important
end-of-life
tasks, advanced knowledge of patient preferences has been
found a
necessary, but not sufficient, ingredient for surrogate action
(Engelberg
et al., 2005; Hines et al., 2001; Layde et al., 1995; Suhl,
Simons, Reedy, &
Garrick, 1994).
For many Americans, the recent uproar about so-called ‘‘death
panels’’

(Lepore, 2009) evoked images of medical care driven by
external mandates
and little individualized choice. This underscored both public
and political
misunderstanding of the tremendous challenges faced by those
making
decisions in support of a loved one’s medical care at life’s end.
In addition
to highlighting the resistance and barriers associated with end-
of-life discus-
sions in American culture, this debate has emphasized
Americans’ fears of
‘‘dying badly’’ (Court, 2009). At the same time, the debate
countered the
status quo by bringing to light the crucial importance of explicit
com-
munication by persons charged with making respectful health
care choices
on behalf of a loved one whose preferences would otherwise
remain
unspoken.
Social work professionals providing services to surrogates or
extended
family members involved in decision making in the ICU
generally have relied
on extensive professional training and experience in delivering
short-term,
crisis, or other brief treatment interventions to the surrogate
population.
Although the very public life and death of Terri Schiavo
reminded us of
the potentially negative and long-lasting consequences possible
in relation-
ships among patients’ survivors (Ditto, 2006), social work
professionals have

had few empirical findings available to guide them as they
assist surrogates to
discharge their duty of making treatment decisions. For that
reason, this study
sought to answer the question, ‘‘Did surrogates’ personal
attributes, or their
perceptions of communications, social support, or self-efficacy
directly
influence their perception of the benefits and barriers associated
with their
life-sustaining treatment decisions?’’ In other words, how well
did these
factors predict participants’ sense that they had done the right
thing for their
loved one?
28 J. W. Buckey and N. Abell
LITERATURE REVIEW
Development of Surrogate Roles and Responsibilities
During the late 20th century, the health care surrogate role
emerged as an
outgrowth of three interrelated developments: application of
biomedical
technology to critically ill patients, development of the field of
bioethics,
and judicial and legislative decisions directing surrogate and
proxy actions
(Health Care Advance Directives Act, 2009).
In recognizing the right of parents to speak and act on behalf of
family

members, federal and state courts acknowledged the health care
surrogate
role (Cruzan v. Director, Missouri Department of Health, 1990;
Quinlan v.
New Jersey, 1976). These extensions of individual patient rights
from
competent to incompetent patients paralleled passage of the
Patient
Self-Determination Act (PSDA, 1990), directing that all
Medicare and Medi-
caid patients be allowed to express their individual preferences
for health
care in advance of receiving medical treatment. This resulted in
each state
eventually moving to establish evidentiary standards that would
determine
specific conditions under which patients’ previously expressed
treatment
wishes would be honored. Consequently, individual state
statutes have
produced a diverse surrogate nomenclature consisting of a
number of inter-
changeable titles for patients’ representatives, such as health
care surrogate,
durable power of attorney for health care (DPAHC), health care
proxy, or
guardian. This language also reflected the varying surrogate
duties and pro-
cesses assigned within each state (Cruzan v. Director, Missouri
Department
of Health, 1990; Health Care Advance Directives Act, 2009).
Initially, research on surrogate activity focused research
attention
on medical patient decision making (Smeidra et al., 1990) or on
patient-

surrogate treatment decision concordance to gauge surrogate
accuracy in
predicting patient treatment preferences (Cogen et al., 1992;
Hare, Pratt, &
Nelson, 1992; Seckler, Meier, Mulvihill, & Cammer-Paris,
1991). Yet, these
early studies produced inconsistent findings and offered little
insight into
the actual surrogate decision-making process (Engelberg et al.,
2005).
Instead, they produced an initial view of surrogate performance
that persists
today: surrogates were ‘‘unreliable’’ patient representatives,
and their
decisions ‘‘are no better than random chance’’ (Suhl et al.,
1994, p. 90).
More recent investigations have inquired into amounts and types
of
preliminary patient-surrogate communications, to move
surrogate decision
making from its initial presentation of surrogate duties limited
to a simple,
isolated decision, to a series of complex, multi-tasked
responsibilities orche-
strated by individuals who represent incapacitated patients
(Buckey, 2007;
Limerick, 2007; Swigart et al., 1996; Thelen, 2005; Vig, Taylor,
Starks, Hopley,
& Fryer-Edwards, 2006). Patient-surrogate communication
preceding the
patient’s need for medical treatment emerged as an instrumental
component
Life-Sustaining Treatment Decisions 29

in surrogate decision-making studies. When surrogates knew
patient wishes,
they were committed to following them; when they did not,
surrogates
reported high levels of decision conflict and poorer post-
mortem adjustments
(Buckey, 2007; Carr & Moorman, 2008; Seckler et al., 1991;
Wright et al., 2008).
Increasingly, examinations of surrogacy have revealed a
stressfully
complex assortment of tasks. When they knew little about
patient care prefer-
ences, surrogates displayed an ‘‘insatiable’’ need for
information (Abbott,
Sago, Breen, Abernethy, & Tulsky, 2001, p. 200), including
human physiology,
trajectory of patient illnesses, prognoses, and likely responses
to treatment
(Hiltunen, Medich, Chase, Peterson, & Forrow, 1999; Jacob,
1998; Swigart
et al., 1996). Surrogates evaluated patients’ medical and
emotional conditions
together with prior illness histories, and factored what patients
said into their
decisions (Abbott et al., 2001; Hiltunen et al., 1999, Jacob,
1998; McNabney,
Beers, & Siebens, 1994; Swigart et al., 1996). Less knowledge
about patient
preferences increased family conflict, surrogates’ personal
distress, and
number of treatment decisions required (Abbott et al., 2001;
Hiltunen et al.,
1999; Jacob, 1998; Lautrette et al., 2007).

Surrogates may feel both moral and ethical obligations to
respect patient
treatment wishes, regardless of their personal discomfort
(Buckey, 2007;
Swigart et al., 1996). Those who honored patients’ wishes
reported greater suc-
cess in post-mortem adjustment, and those who failed to do so
reported more
problems after the patient died (Jacob, 1998; Lautrette et al.,
2007). Surrogates
attempted to make decisions congruent with patient, surrogate,
and family
values, while avoiding decisions likely to increase patient pain
or complicate
treatment (Abbott et al., 2001; Hiltunen et al., 1999; Jacob,
1998; Vig et al.,
2006). Decisions to withhold treatment were often based on
patients’ poor
prognoses, lack of mental acuity, and adverse reactions to
treatment (Cogen
et al., 1992; Hare et al., 1992; Layde et al., 1995; McNabney et
al., 1994; Smedira
et al., 1990).
Surrogates were routinely emotionally closer to patients than
other
family members, and often assumed a role of leadership in the
family,
expanding their responsibilities to care for other family
members prior to,
during, and following patient illness. These family leadership
skills appeared
to expedite decision making and included efforts to bring
together family
members divided in their preferences for patients’ medical care

and treat-
ment (Swigart et al., 1996).
Surrogates often view physicians as primary information
sources about
patient condition and prognosis, leading them to expect
physicians to be
available and involved during decision making (Engelberg et
al., 2005; Lewis
et al., 2006). Physician traits, such as availability, openness,
and support,
enhanced surrogate trust and produced greater adherence to
physicians’ treat-
ment recommendations (Abbott et al., 2001; Hiltunen et al.,
1999; Jacob, 1998;
Swigart et al., 1996). Conversely, and especially regarding
decisions to forgo
treatment, lower trust levels created greater decision-making
difficulty
(Hiltunen et al., 1999; Swigart et al., 1996). Collectively,
surrogates’ subjective
impressions of patient conditions, combined with information
acquired from
physicians, medical staff, and family members, aided surrogate
decision
making while mitigating their distress (Abbott et al., 2001;
Jacob, 1998;
Johnson et al., 2000; Hiltunen et al., 1999; McNabney et al.,
1994; Swigart
et al., 1996; Wright et al., 2008). In acquiring reliable
information from

multiple sources, surrogates made decisions after processing
information
obtained from patients and significant others; i.e., physicians,
nurses, or
family members (Hiltunen et al., 1999; Jacob, 1998; Johnson et
al., 2000;
Limerick, 2007; Swigart et al., 1996; Vig et al., 2006).
Incorporating Theory
To offset one major omission from prior studies, a conceptual
model of
surrogate decision making with variables based on relevant
theory, the
Health Belief Model was designed for this study (HBM;
Rosenstock, Strecher,
& Becker, 1988). The HBM has previously been applied to
gauge individual
preventive health, illness, and sick role behaviors and to
emphasize readi-
ness to act during periods of uncertainty. Although the HBM
has not been
applied to the health-related behaviors of persons acting on
another’s behalf,
the core of this value-expectancy model can be applied to
surrogates who
anticipate that particular actions taken on behalf of a critically
ill patient will
achieve a desired outcome. Their evaluation of potential patient
benefits and
barriers, or disadvantages, associated with treatment choices is
central to the
Surrogate Decision-Making Model (see Figure 1). For example,
surrogates
FIGURE 1 Proposed Surrogate Decision-Making Model.

may experience conflict when instituting a treatment possessing
both
advantages and disadvantages, such as stabilizing the patient’s
medical
condition while simultaneously risking greater medical
complications
resulting from the treatment choice.
We also adapted a key group of HBM social cognitive
antecedents
thought to precede individual surrogate health behaviors and
modify factors
influencing their action: demographic characteristics (age,
gender, education,
and ethnicity), sociopsychological attributes and beliefs
(emotional closeness
to patient and perceived social support), and structural
influences (patient
and physician communications). Thus, the model represents the
interactive,
psychosocial approach to surrogate decision making as it
acknowledges the
social and psychological realities of individual health decision
behavior. The
variable of self-efficacy was later introduced to enhance the
model’s ability to
account for greater variation in behavior (Rosenstock et al.,
1988). Although
self-efficacy had not been incorporated into subsequent HBM
model tests as
originally proposed by Rosenstock and colleagues, in other

models examin-
ing health behavior it had historically accounted for as much as
20% of the
variance (Abraham & Sheeran, 2000). Thus, we included it here.
Physician assessment of other HBM variables, such as threat
and suscep-
tibility of severe (patient) illness, is a unique challenge in
application of the
HBM to surrogate decision making. These HBM variables are
portrayed via
physicians’ treatment recommendations, thus are not
represented by surrogate
decisions and were excluded from our model. Overall, the HBM
represents an
initial, interactive, psychosocial approach to surrogate decision
making,
reflecting the social-psychological reality of surrogate decision
behaviors while
incorporating the multiple influences potentially influencing
health-related
surrogate behaviors within health-related environments
(Abraham & Sheenan,
2000). It offers a coherent approach to examine variables
identified as being
inconsistently measured in the surrogate literature, yet
selectively found to
influence surrogate decisions (Buckey, 2007; McNabney et al.,
1994).
METHODOLOGY
While existing literature provides an initial profile of influences
on surrogate
decision making, methodological and conceptual limitations are
often unadd-

ressed, raising concerns about the validity of conclusions.
George (2002)
charges that researchers have failed to apply a uniform
definition of surro-
gacy. Others cite difficulties associated with prospective
designs attempting
to examine life-threatening treatment conditions before they
have actually
occurred, versus retrospective studies that risk bias when
survivor recall
may be clouded by personal bereavement and grief (Addington-
Hall &
McPherson, 2001). Finally, use and alteration of measurement
scales with
unknown or unreported psychometric properties compromised
internal
and statistical conclusion validity (Cogen et al., 1992; Hare et
al., 1992;
Smedira et al., 1990; Suhl et al., 1994). As a result, questions
remain about
the credibility of findings based on questionably measured
constructs.
An attempt was made to address these and related limitations in
our
investigation of factors influencing surrogate and proxy
decisions about
life-sustaining treatments. As a result, this study differs from
prior efforts in
a number of ways. First, a uniform definition of surrogacy,
encompassing

multiple statutory definitions of adults functioning in the role of
treatment
decision maker on behalf of a critically ill medical patient was
applied. In this
study, surrogacy refers to ‘‘a competent adult who has not been
expressly
designated to make health care decisions for a particular
incapacitated indi-
vidual, but who, nevertheless, is authorized pursuant to s.
765.401 to make
health care decisions for such individual’’ or ‘‘any competent
adult expressly
designated by a principal to make health care decisions on
behalf of the prin-
cipal upon the principal’s incapacity.’’ These definitions are
compatible with
the recent Florida Health Care Advance Directives Act (2009,
Definitions
sections, { 15 and { 16). Second, adhering to recommendations
for conduct-
ing research on end-of-life decision-making processes directly
(Gessert,
Curry, & Robinson, 2001), we conducted this study in real time,
or while
participants were actively engaged in health care surrogate
decision making.
People currently acting as surrogate and proxy for patients in
the ICU=CCU
(Critical Care Unit) were surveyed immediately after their
decisions about a
life-sustaining treatment and, where possible, before those
decisions had
been acted upon or their outcomes known; i.e., while patients
continued to
receive care. Thus, methodological concerns associated with the
prospective–

retrospective study debate were minimized as much as possible.
In addition to the conceptual framework described above, also
employed were reliable, valid measurement tools; some,
specifically
developed and validated for use in this study (Buckey & Abell,
2004,
2009). A power analysis determined the required sample size
needed to
maximize the predictive power of the regression procedures
employed (Hair,
Black, Babin, Anderson, & Tatham, 2006). Again, the question
addressed was
‘‘Did surrogates’ personal attributes, or their perceptions of
communications,
social support, or self-efficacy directly influence their life-
sustaining
treatment decisions?’’
Design
A real-time, descriptive, cross-sectional survey design was used
to assess
surrogate values, attitudes, and beliefs immediately after their
decisions to
initiate, withdraw, or withhold one of four life sustaining
treatments: cardio-
pulmonary resuscitation (CPR), mechanical ventilation, tube
feedings (PRN
or TPR), or dialysis. We surveyed a sample of surrogates from a
diverse,
heterogeneous population who were active in their decision-
making roles.

Sample
Respondents were adults making life-sustaining treatment
decisions on
behalf of incapacitated medical (ICU) patients during a current
hospitaliza-
tion, a prior hospitalization (such as with hospice patients), or
for advanced
Alzheimer’s patients being cared for at home. Surrogates
qualified for the
study if they had made at least one life-sustaining treatment
decision on
behalf of a patient and then continued in the surrogate role, and
if their
patient continued to receive some form of medical care.
Facilities were identified where surrogates might be found. One
indicator
of estimated surrogate activity was the number of hospital
deaths, which also
included patient age, gender, and race, reported quarterly by
state-licensed
hospitals to Florida’s Agency for Health Care Administration
during the calen-
dar years 2001–2003. Letters were sent to a broad range of
hospital and other
agency administrators seeking interest in study participation. Of
60 hospitals
contacted, 8 administrators expressed study interest; of 18
hospices, 5 were
interested, and no responses were obtained from the 55 long-
term care facili-
ties contacted. Final sample sites included three hospitals, two
hospices, and

two Alzheimer’s and Parkinson’s disease support agencies.
As the tertiary facilities engaged for this study (described
below)
maintain no formal records on surrogate action or on the
utilization of life-
sustaining treatment equipment, random sampling of study
participants was
not an option. Using a nonprobablity, purposive sampling
approach based
on the relevant characteristics of this highly specialized
population (Henry,
1990), the sample blended respondents from rural with urban
communities.
Measures
We used a combination of researcher-created items and
standardized
measurement scales to strengthen data reliability and statistical
conclusion
validity, and to increase the power of statistical tests employed
(Tate, 1998).
Of the 10 predictor variables represented in Figure 1, 4 were
demographic—
i.e., surrogate age, education level, gender, race-ethnicity—and
4 were
single-item or summated rating scales developed for this study
(physician
and patient communications, religiosity-spirituality, and
emotional closeness
to the patient).
Existing standardized scales measured the remaining two
predictor
variables. Social support was measured by the 12-item

Multidimensional Scale
of Perceived Social Support (MSPSS; Zimet, Dahlem, Zimet, &
Farley, 1988),
and self-efficacy was measured by an adaptation of the 20-item
Healthcare
Surrogate Preferences Scale (HSPS; Buckey & Abell, 2004).
While the original
HSPS was designed to be predictive of self-efficacy (i.e.,
projecting what one
would or could do), this view was modified for this study to ask
participants
to recall their judgments after the fact, following a surrogate
decision. Thus,
respondents had an opportunity to reflect on individual
competencies
required to conduct their duties while simultaneously evaluating
personal
beliefs about their role experience, including its tasks and
responsibilities.
The Acceptance of Treatment Choice Inventory (ATCI),
measuring
surrogate perceptions of the advantages (benefits) and
disadvantages (bar-
riers) associated with evaluating life-sustaining treatment
decisions, was used
to measure the criterion variable, benefits, and barriers (Buckey
& Abell,
2009). As established psychometrics are inherently sample
dependent,
reliability of all standardized measures were reassessed using

Cronbach’s
alpha (a) prior to hypothesis testing.
Although this study design was primarily quantitative, it also
included a
single qualitative item, ‘‘Is there anything else you feel we
should know
about your surrogate experience?’’ Located at the end of the
survey, this item
provided respondents an opportunity to share personal views on
the subject.
Data Collection
Consent for use of human subjects was obtained from
University and facility
institutional review boards (IRBs), facility or agency
administrators, and=or
Boards of Directors. Potential study participants were
approached in ICUs,
hospice, or community support agency service locations to
complete an
anonymous, self-report survey about their feelings, attitudes,
and beliefs
following their decision to initiate, withhold, or withdraw
patient treatment.
Study participation was confidential and voluntary and the
consent process
specified a disclaimer that participation would in no way affect
patient
treatment.
Participants were requested not to place personal identifying
information
protected under HIPPA (1996); i.e., name, patient name, age,
bed or room

number, or any signature on the survey. Although participants
were encoun-
tered face-to-face when asked about their interest in the study,
after data
collection there was no way for the researcher to associate any
response with
any individual. Participants chose one of three methods of
survey return: in
person to the researcher or research associates, via facility drop
boxes, or
by mail. Other than survey completion, no other respondent
activity was
required. Counseling resources were listed in the packet to
address potential
respondent emotional reactivity.
Several facilities required the researcher to undergo HIPPA
(2002) on-site
training.The first author conducted on-site training to assist in
standardizing
data collection procedures for research associates who were
recruited from
facility staff members. Volunteer research associates were given
study back-
ground and data collection procedures, including paraphrasing
of verbal
scripts that were used during surrogate interactions and prior to
survey
administration. These associates used a verbal script to
announce study avail-
ability and assess study interest. HIPPA guidelines mandated
that only facility

staff could approach potential participants. After receiving an
affirmative
response, surrogates were personally presented a survey packet.
Staff and
potential respondents were familiarized with study procedures.
After receiv-
ing facility permission to post survey notices within facilities—
i.e., in the
ICU waiting room, on staff bulletin boards, or in newsletters—
the researcher
posted notices to publicize the study, ensuring researcher
availability during
day, evening, and night shifts.
Two hundred forty-six survey packets were distributed to
potential
respondents; 135 usable surveys were returned. The overall
response rate
of 55% was within the range of rates documented in the
literature, from
37% (community mail survey, Hare et al., 1992) to 100%
(medical inpatients,
Suhl et al., 1994).
Data Management
Data analyses compared raw data runs using listwise deletion
with runs using
mean replacement values. As results of all model variables
differed notably
and yielded greater numbers of statistically significant
correlations using
mean replacement data, the more conservative, raw data values
were used
in data analyses (Tate, 1998). The influence of outliers, evident

in four
variables, resulted in deletion of three cases, yielding the total
usable sample
of 132. Sample sizes for specific analyses ranged from 105 to
128, each
meeting criteria for adequate power in hypothesis testing. Data
analyses
were performed with SPSS 14.0.
RESULTS
Respondents
The average surrogate age was 58 years (SD ¼ 12.5), slightly
less than the aver-
age reported age of patients (59 years). Patient ages over 89 (n
¼ 22) were not
reportable under HIPPA (2002) privacy regulations.
Consequently, actual
mean age for patients is unknown, though certainly higher than
the figure
reported here. Respondents were three-fourths female (78.8%),
predomi-
nately white (82.5%), and reported 14.2 years of formal
education (M ¼
14.2, SD ¼ 2.89). Gauging themselves to be very religious or
spiritual (M ¼
7.49; SD ¼ 2.22) on a scale from 1 ¼ not at all important to 9 ¼
extremely
important, most surrogates (n ¼ 111, or 84.1%) felt extremely
to very emotion-
ally close to the patient. Only a minority (n ¼ 5, or 3.8%)
reported feeling
neutral or distant toward the patient.
Spouses were the largest relationship subgroup (n ¼ 49, 37.1%),

followed by daughters (n ¼ 47, 35.6%), sons (n ¼ 13, 9.8%),
and others
(n ¼ 23, 17.5%). Religious affiliation was primarily Protestant,
73 (55.3%),
followed by Catholic, 44 (33.3%), and Jewish, 3 …

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