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Journal of Social Work in End-

Of-Life & Palliative Care
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Social Work and End-of-Life

Care
a
Cheryl K. Brandsen PhD, MSW
a
Calvin College, Department of Sociology and Social
Work , Grand Rapids, MI, USA
Published online: 20 Nov 2008.

To cite this article: Cheryl K. Brandsen PhD, MSW (2005) Social Work and End-of-
Life Care, Journal of Social Work in End-Of-Life & Palliative Care, 1:2, 45-70, DOI:
10.1300/J457v01n02_05

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 Social Work and End-of-Life Care:
Reviewing the Past and Moving Forward
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Cheryl K. Brandsen, PhD, MSW

ABSTRACT. This paper reviews the professional literature with respect

to the social work professions involvement in end-of-life care. The search
process was conducted by entering key words in various combinations to
electronic databases. Eligible articles were required to address one of the
following: roles and activities of social workers in providing end-of-life
care; core principles valued by social workers in the provision of
end-of-life care; and barriers to provision of effective end-of-life care. The
literature from 1990 through July 2004 was searched most rigorously.
Based on this review, suggestions for where the profession of social work
should focus its energies are offered. These key areas include focusing on
generating empirically-based knowledge for practice and policy analysis
and developing a system of social work education that addresses the
unique knowledge and skills needed to participate in end-of-life practice
as competent and informed professional practitioners. Current initiatives
with regard to critical areas are summarized. [Article copies available for a
fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail ad-
dress: <docdelivery@haworthpress.com> Website: <http://www.HaworthPress.com>
2005 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. End-of-life, social work practice, social policy, social

work education

Cheryl K. Brandsen, PhD, MSW, is affiliated with the Department of Sociology and
Social Work, Calvin College, Grand Rapids, MI.
Journal of Social Work in End-of-Life & Palliative Care, Vol. 1(2) 2005
Available online at http://www.haworthpress.com/web/JSWEL
2005 by The Haworth Press, Inc. All rights reserved.
Digital Object Identifier: 10.1300/J457v01n02_05 45
 46 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

INTRODUCTION

Social workers committed to providing competent and effective

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end-of-life care no doubt find this time to be a thought-provoking and

stimulating moment in the profession. The role of social work in
end-of-life care is being re-defined in occasions such as the March 2002
Social Work Summit on End-of-Life and Palliative Care (Christ and
Blacker, 2005; Stoesen, 2002). Various funding initiatives, such as the
Robert Wood Johnson State-Community Partnership grants to 23 states
to improve end-of-life care and the Project on Death in America, bring
renewed energy, developing leaders, and fresh ideas to the practice of
social work in end-of-life care. It is an appropriate time to assess the
professions contributions to this field of practice, such that the profes-
sion can move forward with setting an agenda for future attention to
policy, practice, research, and social work education.
This paper reviews the professional literature with respect to the so-
cial work professions involvement in end-of-life care. Knowing the
professions location in this field of practice is critical for several rea-
sons. Baseline data regarding the roles and activities of social workers
in end-of-life care settings helps set a curricular agenda for BSW and
MSW education. This information also provides a platform from which
empirically based research on social work practice in end-of-life care
can be conducted. This is essential to help the profession explain its
function to other disciplines, educate practitioners and students for
end-of-life practice, serve as the basis for the development and mea-
surement of outcomes for social work practice in end-of-life care, and
guide the creation and development of public policy related to end-of-life
care.
The search process was conducted by entering key words in various
combinations to electronic databases.1 Text word and specific journal
searches also occurred. Finally, as articles were reviewed, citations used
as references in articles, when appropriate, were also secured. To be eli-
gible for inclusion in the review, articles were required to address one of
the following issues: roles and activities of social workers in providing
end-of-life care; core principles valued by social workers in the provi-
sion of end-of-life care; and barriers to social work provision of effec-
tive end-of-life care. Additionally, only those articles written in English
were included. Although some articles address end-of-life care outside
of North America, the search focused on social work and end-of-life
care as conceptualized and practiced in North America. The literature
from 1990 through July 2004 was searched most rigorously; occasional
 Cheryl K. Brandsen 47

articles prior to 1990 were identified and some have been included, but
no claim is made regarding a rigorous search of articles prior to 1990.
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CURRENT SOCIAL WORK ROLES AND ACTIVITIES

IN END-OF-LIFE CARE

For ease of communication, current social work roles and activities in

end-of-life care, as discussed in the literature, are classified according to
roles with persons who are dying and their families and friends, with
other professionals in organizations, and with the larger network of
community services. In actual practice, of course, overlap occurs be-
tween these three domains.

With Persons Who Are Dying and Their Family/Friends

Historically, one stronghold of social work practice is to address

psychosocial concerns; this is certainly the case in end-of-life care
(Brandt and Cody, 1994; Thompson, Rose, Wainwright, Mattar, and
Scanlan, 2001). A 1996 study of assisted suicide and euthanasia in the
state of Washington suggested that physician perceptions of requests
for aid in dying are prompted by worries about loss of control, being a
burden, being dependent on others for personal care, and loss of dignity
(Back, Wallace, Starks, and Pearlman, 1996). In other studies (Arnold,
2004; Breitbart, Rosenfeld, Pessin, Kaim, Funesti-Esch, Galietta, Nel-
son, and Brescia, 2000), depression, hopelessness, and lack of social
support are noted as the strongest predictors for hastened death. These
are psychosocial concerns, and constitute an area where social workers
previously have been active, and continue to be active (Dungan, Jaquay,
Rezink, and Sands, 1995; Quig, 1989; Sakadakis, Bonar, and Maclean,
1987). Rusnak (1991) presents guidelines for social workers in various
hospice settings (home care, inpatient, extended care, bereavement an-
ticipate and react appropriately to needs of terminally ill in) to assist in
orchestrating a safe passage for terminally ill patients. Moynihan,
Christ, and Silver (1988) discuss specific social and psychological tasks
that confront persons with AIDS. Neron (1996) reminds social workers
that they must be mindful of psychosocial issues that shape the desire to
die, particularly in populations affected by HIV and AIDS. While
psychosocial issues are not the sole domain of social work, Reese and
Brown (1997) find that social work continues to have a strong role in
hospice settings dealing with psychosocial issues.
 48 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

Social workers also address spiritual concerns in end-of-life care.

Here, the literature is descriptive of what social workers do and what
they are mindful of in assessment and referrals to clergy (Smith, 1995;
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Smith, 1999). The literature also presents a normative mandate for so-
cial work, that is, something to which they should be paying more atten-
tion, according to professional education standards. After many years of
separating the spiritual needs from the rest of the needs a person has, the
Council on Social Work Education now requires that spirituality con-
cerns be addressed in professional social work education. Ways of do-
ing this in end-of-life care settings are now beginning to enter the
professional literature, mostly as conceptual frameworks (Schroeder,
1997; Smith, 1995; Smith, 1999; Wesley, Tunney, and Duncan, 2004).
Social workers are also active in helping formulate and implement
Advance Directives. Finucane (1999), while not speaking directly to so-
cial workers, discusses barriers to dying well: most people do not want
to be dead and thus are willing to try burdensome treatments with poor
odds for recovery, and it is often difficult to make an accurate prognosis
about when death will come. Bern-Klug (2004) refers to this as an am-
biguous dying trajectory, and social workers who assist in the transition
from gravely ill to dying have roles to fill in knowing whether, when,
where, and how to engage clients in discussions about future health care
wishes and advance directives (Bailly and DePoy, 1995; Bern-Klug,
Gessert, and Forbes, 2001; Hobart, 2001; Neuman and Wade, 1999;
Osman and Perlin, 1994; Rosen and ONeill, 1998). Additional key so-
cial work tasks imbedded in considering Advance Directives include
being able to assess decisional capacity (Davitt and Lenard, 1996), de-
veloping living wills (Dane and Miller, 1990; Foster and Davidson,
1995; Gunter-Hunt, Mahoney, and Sieger, 2002), and assisting clients
to be self-determining as long as possible in spite of reduced decisional
capacity in some areas of life (Nicholson and Matross, 1989). Social
workers are often the preferred staff member to do this work, especially
in nursing home settings (Cochran, 1999). In nursing homes currently,
67 percent of nursing home social workers help residents prepare Ad-
vance Directives (Brown, 1999), and almost all nursing home social
workers make serious efforts to inform residents about and help execute
Advance Directives (Mezey, Mitty, Rappaport, and Ramsey, 1997). So-
cial workers also perform this function in home care settings (Soskis,
1997). Rice, Hicks, and Wiehe (2000) suggest the role of Life Care
Planner for medical social workers, given their knowledge of and abili-
ties to utilize and coordinate community resources, their knowledge of
 Cheryl K. Brandsen 49

and skills in assessing persons in their environments, and their profound

respect for individual worth and dignity.
Various counseling functions with respect to end-of-life care are
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noted in the literature (Brandt and Cody, 1994; Monroe, 1994). Christ
and Sormanti (1999) argue that this is one area where social work is
very competent and its contributions essential. Counseling functions in-
clude work with dying persons and families regarding values clarifica-
tion, emotional assessment, crisis intervention, goal setting, and final
goodbyes (Amar, 1994; Bern-Klug, Gessert, and Forbes, 2001; Rob-
erts, Baile, and Bassett, 1999; Werner, Carmel, and Ziedenberg, 2004).
Counseling functions extend to family members when the dying person
has Alzheimers disease (Collins, Liken, and King, 1993), cancer pa-
tients and families (Coluzzi, Grant, and Doroshow, 1995), care givers of
persons receiving palliative care (Kinsella, Cooper, and Picton (2000),
terminally ill persons who express a desire to die (Van Loon, 1999), and
high-tech home care (Davitt and Kaye, 1996). The goals of such counsel
is varied across settings, but include encouraging psychological and
spiritual growth with women who have HIV (Dunbar, Muellar, and Me-
dina, 1998), offering supportive counseling that empowers patients
(Foster and Davidson, 1995), working with family members when a dy-
ing person requests assisted suicide (Werth, 1999), and facilitating
communication and providing psychological support in oncology set-
tings (Glajchen, Blum, and Calder, 1995). MacDonald (1991) argues
that many generic social work values and skills are integrated into hos-
pice care delivered by other staff and volunteers. Becker (2004) docu-
ments the counseling challenges social workers face in working with
families of persons who are dying with respect to making referrals to
hospice.
Bern-Klug, Gessert, and Forbes (2001) suggest that an essential role
for social work in end-of-life care is that of context interpreter. As such,
the practitioner works with other health professionals to ensure that the
client, family, and team within the clients social context understand the
medical prognosis. Implicit in the notion of context interpreter is prac-
tice that is diversity competent, mindful of what is important to patient
and family with respect to cultural values and ethnic experiences (Dungan,
Jaquay, Rezink, and Sands, 1995; Reese, Ahern, Nair, OFaire, and
Warren, 1999; Schroeder, 1997).
Advocacy in end-of-life care is another area to which social workers
contribute with competence (Brandt and Cody, 1994; Christ and Sormanti,
1999; Davidson and Foster, 1995). They assist patients to get medical
care in a location of their preference, intervene for pain relief, explore
 50 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

financial relief, negotiate with authority figures, and provide access to

mental health and spiritual care (Bern-Klug et al., 2001).
Closely aligned with advocacy in many respects, social workers as
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casemanagers are skilled in negotiating complex systems (Brandt and

Cody, 1994; Christ and Sormanti, 1999; Cowles and Lefcowitz, 1992;
Monroe, 1994; Sheldon, 2000). In this role, social workers provide fi-
nancial information, refer to community resources, and use community
resources (Kulys and Davis, 1987; Miller, Hedlund, and Murphy, 1998).
Taylor-Brown, Teeter, and Blackburn (1998) report on social work ef-
forts in providing permanency planning with and for children with par-
ents who have AIDS.
Bereavement work is a critical and long-standing role of social work
practitioners in end-of-life care (Botsford, 2000). The literature here is
very large, and includes such issues as bereavement work in acute care
settings where it is often overlooked (Fauri, Ettner, and Kovacs, 2000;
Lord and Pockett, 1998; Pauw, 1991; Wells, 1993), in addition to set-
tings where one might expect to find this addressed, such as in hospice
programs (Walsh-Burke, 2000). Many authors note the importance of
beginning this work before death (Collins, Liken, and King, 1993), with
families who are anticipating or who have lost loved ones to Alzhei-
mers disease (Walker, Pomeroy, McNeil, and Franklin, 1996b), to
AIDS (Walker, Pomeroy, McNeil, and Franklin, 1996a), or where
loved ones experience a gradual decline in nursing home care (Amar,
1994; Murphy, Hanrahan, and Luchins, 1997; Remsen, 1993). Special
bereavement issues addressed in the literature include unique issues of
men and grief (Lister, 1991), older adults who are mildly mentally re-
tarded (McDaniel, 1989), when life ends through assisted suicide (Miller,
Hedlund, and Murphy, 1998; Miller, Messler, and Eggman, 2002),
when children die (Papadatou, 1997; Pauw, 1991) and work that is sen-
sitive to cultural and structural factors (Duncan et al., 2004; Reese et al.,
1999). Gray, Zide, and Wilker (2000) present a solution-focused group
work model for conducting bereavement groups in under-served rural
communities.
Social workers also have an important role to fill in addressing ethi-
cal issues with dying persons and their families (Christ and Sormanti,
1999; Csikai, 1999a, 1999b, 2000, 2002, 2004). These issues are di-
verse, including everyday ethical issues that arise out of close and inti-
mate situations (Egan and Kadushin, 1999; Kadushin and Egan, 2001),
procedures in high-tech home or acute care (Davitt and Kaye, 1996;
Silverman, 1992), and procuring organs for transplantation (Landau,
1996). Social workers are also involved in ethical issues regarding eu-
 Cheryl K. Brandsen 51

thanasia and refusing medical treatment (Ogden and Young, 1998,

2003; Shafer, 1993; Werth, 1999, 2002). Increasingly social workers
are involved in discussions related to assessment of clients requesting
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physician-assisted suicide, raising questions about social workers

preparation in mental health issues and ethics (Csikai, 1999c; Manetta
and Wells, 2001; Miller, 2000; Miller, Messler, and Eggman, 2002).
Foster and McLellan (1992) suggest that conversations with family
members about end-of-life care preferences can often translate into
family decision making principles for end-of-life care.
Additional roles and activities for social workers with persons who
are dying and their loved ones include education, pain management, or-
gan procurement, and funeral arrangements. As educators, social work-
ers teach families about disease and dying processes (Collins, Liken,
and King, 1993; Quinn, 1998), about end-of-life care and attending eth-
ical dilemmas (Csikai, 1999a), and high-tech home care (Davitt, 1996).
With respect to pain management, social workers contribute as mem-
bers of interdisciplinary pain management teams (Coluzzi, Grant, and
Doroshow, 1995), assessing psychosocial dimensions of pain in an eco-
logical context (Sieppert, 1996), sometimes offering intervention through
hypnosis or imagery techniques (Foster and Davidson, 1995). Regard-
ing organ procurement, Landau (1996) discusses tasks related to organ
procurement, including approaching families for donations, planning
and coordinating organ donations, establishing criteria for organ recipi-
ent, and educating the public regarding the need for organ donations.
Bern-Klug, Ekerdt, and Wilkinson (1999) refer to assisting with funeral
arrangements as final discharge planning that social workers do. This
includes tasks of giving information, planning services in line with
goals, and advocating for the poor. Social work tasks in the role of fu-
neral arrangements also apply to home health care settings (Chichin,
Ferster, and Gordon, 1994), with persons who have AIDS (Dane and
Miller, 1990), and in acute care hospitals that serve terminally ill pa-
tients (Lord and Pockett, 1998).

With Other Professionals in Organizations

Social work roles and activities as members of interdisciplinary

teams in caring for dying persons and their families are well-docu-
mented and highly valued (Brandt and Cody, 1994; Mularski, Bascom,
and Osborne, 2001; Storey, 1994; Werner, Carmel, and Ziedenberg,
2004). As members of interdisciplinary teams, social workers assist in
helping to break bad news and telling the truth (Adler, 1989; Lord and
 52 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

Pockett, 1998; Von Bloch, 1996). They assist in assessment, being par-
ticularly skilled in holistic, multi-level, and multi-system assessment
that focuses on both internal and external strengths and limitations of
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the client system (Glajchen, Blum, and Calder, 1995; Thompson, Rose,
Wainwright, Mattar, and Scanlan, 2001). Social workers as members of
interdisciplinary teams are playing an increasingly large role in assess-
ing factors that prompt requests for hastened death (Csikai, 1999a). As
members of interdisciplinary teams, social workers also facilitate com-
munication between staff (Csikai, 1999a; Miller, Hedlund, and Murphy,
1998), assist other team members who find it difficult to cope with dying
persons (Foster and Davidson, 1995; Monroe, 1994; Vachon, 1986), and
assist other team members to do their work more effectively (Sheldon,
2000; Skobel, Cullom, and Showalter, 1997). Social workers are also
considering more effective ways of mentoring and supervising each
other in end-of-life practice. Itzhaky and Lipschitz-Elhawi (2004), for
instance, present a model of supervision that incorporates hope as a cop-
ing strategy for social workers in working with terminally ill clients and
their families. Models of interdisciplinary training programs in pallia-
tive care are appearing in the literature (Kristjanson, Dudgeon, Nelson,
Henteleff, and Balneaves, 1997; Mularski, Bascom, and Osborne, 2001).
Nevertheless, despite the potential for holistic treatment, interdisciplin-
ary teams regrettably are not widely implemented in end-of-life care
settings except for hospice settings (Connor, Egan, Kwilosz, Larson,
and Reese, 2002).
As noted earlier, social workers also serve as context interpreters, ad-
vocates, and educators. In context interpretation at the organizational
level, social workers collaborate with other health professionals to ensure
that these professionals understand the clients social context (Bern-Klug
et al., 2001), including cultural and ethnic dimensions (Dungan et al.,
1995; Miller et al., 1998; Reese et al., 1999; Schroeder, 1997; Werth,
Blevins, Toussaint, and Durham, 2002). Regarding advocacy at the or-
ganizational level, the role of social workers takes the shape of advocacy
for changes in social policy within or outside the institution to meet un-
met needs (Foster and Davidson, 1995; Rusnak, Schaefer, and Moxley,
1991). With respect to education, social workers participate in staff de-
velopment and volunteer training (Kuyls and Davis, 1987; Monroe,
1994; Rusnack, Schaefer, and Moxley, 1988, 1990; Sheldon, 2000), in-
form staff about legislative efforts related to end-of-life care (Galambos,
1998), and teach essential skills to other professionals for end-of-life care
such as communication skills (Cochran, 1999; Mularski, Bascom, and
Osborne, 2001).
 Cheryl K. Brandsen 53

Social workers also develop policies and programs that provide a

broad array of continuous services across organizations for dying per-
sons and families. These programs offer concrete help with basic needs,
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advocacy, psychosocial care, and access to hospice care (Brandt and

Cody, 1994; Kulys and Davis, 1986). Ogden and Young (1998, 2003)
argue, in the context of voluntary euthanasia and assisted suicide, that
social workers need to be knowledgeable about these issues so as to
make the ramifications of these decisions accessible to clients. Beyond
being know- ledgeable, social workers need to be involved in the policy,
legal, and ethical dimensions of voluntary euthanasia and assisted suicide
(Baker, 2000; Manetta and Wells, 2001; Miller, Mesler, and Eggman,
2002; Shafer, 1993; Smokowski and Wodarski, 1996), as well as a host of
other policies related to end-of-life care such as the Patient Self-Determi-
nation Act and Advance Directives (Galambos, 1998; Hoffman, 1994;
Keigher, 1994; Mezey, Mitty, Rappaport, and Ramsey, 1997; Osman
and Perlin, 1994; Rosen and ONeill, 1998).

With the Larger Network of Community Services

Documentation of social work roles and activities in the larger of

arena of community is sparse. For the most part, social work practice
here is an extension of roles and activities already noted.
In terms of advocacy and policy and program development, Werth
and Blevins (2002) highlight the need for professionals to be knowl-
edgeable about and skilled in advocacy efforts related to public policy
and end-of-life care. Bern-Klug (2004) asserts that social workers,
given their person-in-environment perspective, must help reconcep-
tualize end-of-life care to include those situations where death is ambig-
uous, that is, when people are at a greatly increased risk of death,
although the timing is highly uncertain (p. 55), and work toward
changing health care systems and public policy to acknowledge this re-
ality. Davitt and Kaye (1996) suggest that social workers must be
knowledge about state laws with respect to Advance Directives. Galambos
(1998) argues that social workers must advocate for passage of legisla-
tion that will preserve autonomy in end-of-life care, and Keigher (1994)
points to a role for social workers in developing and implementing re-
sponsive state laws for end-of-life care. While some policies related to
ethical issues can be addressed within organizations, many issues are
shaped by public policy and as such, the social workers skill in policy
analysis and advocacy extends beyond the walls of the organization
(Roff, 2001). As case managers who are skilled in negotiating complex
 54 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

systems (Christ and Sormanti, 1999), such tasks take social workers
into the community to network. Furthermore, this process uncovers ex-
isting gaps in service delivery (Fauri, Ettner, and Kovacs, 2000; Stein,
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2004), which then become advocacy issues. Finally, educational efforts

of social workers also bring them into collaborative efforts in a larger
community context. Galambos (1998), for instance, argues that legisla-
tive efforts with respect to the Patient Self-Determination Act require
community awareness and knowledge.

CORE PRINCIPLES

Advocating for the disenfranchised, providing individualized ser-

vices to meet unique needs in a respectful manner mindful of cultural
and ethnic differences, enhancing and restoring relationships between
people and groups, and pursuing social justice and meaningful opportu-
nities for participation in the deliberations that affect ones life are cen-
tral values espoused by the social work profession (NASW Code of
Ethics, 1996). Many of these foundational values are also addressed in
the literature on social work practice in end-of-life care, although the
need for practitioners to receive assistance in sorting these through and
thinking critically is evident (Csikai and Bass, 2000; Csikai, 2004).

Self-Determination

Self-determination as a core principle runs through each of the

NASW policy statements related to end-of-life care (National Associa-
tion of Social Workers, 2003).2 The organizations statement, for in-
stance, on Client Self-Determination in End-of-Life Decisions states:
NASWs position concerning end-of-life decisions is based on the prin-
ciple of client self-determination. Choice should be intrinsic to all aspects
of life and death (p. 48). In practice, the valuing of self-determination
extends to and undergirds many arenas in end-of-life care, including ad-
dressing ethical issues (Osman and Perlin, 1994), indirect autonomy
(Bailly and DePoy, 1995; Bern-Klug, 2004; Bern-Klug, Gessert, and
Forbes, 2001; Mezey, Mitty, Rappaport, and Ramsey, 1997), family deci-
sion-making about treatments (Cochran, 1999; Hoffman, 1994; Landau,
1996; Roberts, 1989; Quinn, 1998; Shafer, 1993), completing and imple-
menting Advance Directives (Galambos, 1998; Nicholson, 1989), and
considerations of assisted suicide (Csikai, 1999a, 1999b; Csikai and
Manetta, 2002; Miller, Hedlund, and Murphy, 1998; Miller, Messler, and
 Cheryl K. Brandsen 55

Eggman, 2002). While self-determination is valued in practice, it is often

difficult to implement (Mesler, 1994-1995, 1995). Limits on self-deter-
mination in current health care structures as well as the lack of culturally
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sensitive models for assisting clients and their loved ones in making deci-
sions are among current challenges social workers face in furthering the
value of self-determination (Luptak, 2004).

Common Good

Although self-determination is highly valued in the social work end-

of-life literature, it is not without criticism. Wesley (1996), in a discussion
of various professional social work documents, argues that it is important
to bring the notion of the common good to the forefront along with
self-determination in end-of-life decision-making. Shafer (1993) also
speaks to the tensions inherent in social work values between protection
of life versus autonomy and freedom. In a more specific context,
Callahan (1994) argues that the principle of self-determination justifying
assisted suicide is inadequate, and must be balanced against other princi-
ples. Ogden and Young (1998) suggest that self-determination must be
balanced with the needs of vulnerable populations in considering volun-
tary euthanasia and assisted suicide. Miller, Messler, and Eggman (2002)
discuss the tensions social workers experience with regard to their per-
sonal values about assisted suicide and the professions commitment to
client self-determination.

Holistic Care

In contrast to medicine, which is often criticized for seeing persons

solely in terms of their disease states, social workers value holistic
care in end-of-life care (Lethem, 1999; Quinn, 1998; Rice, Hicks, and
Wiehe, 2000). This takes several forms. Lord and Pockett (1998) for
instance, advocate a bio-psycho-social approach to end-of-life care.
Smith (1995) and Smith (1999) argue for the inclusion of sound spiri-
tual assessment and intervention. Roberts (1989) advocates that pa-
tients subjective interpretation of events (in contrast to objective,
hard data) be affirmed because patients respond emotionally and
behaviorally to the interpretation of disease. Specific frameworks for
holistic care are offered in the literature (Loscalzo and Bucher, 1999;
Miller, Hedlund, and Murphy, 1998). A holistic approach also entails
the dual purpose of social work, that is, to assist individuals and
groups in need but also change institutions so that they are more re-
 56 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

sponsive to individual and group needs and promote social justice

(Luptak, 2004; MacDonald, 1991).
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Respect for Dying Person and Those that Matter

to the Dying Person

The notion of respect for dying persons and their loved ones is af-
firmed in the literature in a variety of contexts and situations. This in-
cludes respect for unique cultural and spiritual traditions (Dungan,
Jacquay, Rezink, and Sands, 1995), the development of services that re-
spond to diverse situations and populations (Bailly and DePoy, 1995;
Botsford, 2000), the importance of social networks (Chung, 1993), the
affirmation of uniqueness in how clients experience life and death
(Leichtentritt and Rettig, 2001; Miller, Hedlund, and Murphy, 1998),
and acknowledging the dignity and meaning in the life and death of dy-
ing persons (Moynihan, Christ, and Silver, 1988).
Respect is communicated in a variety of ways to dying persons and
loved ones. Quig (1989) notes the importance of non-judgmental, non-di-
rective, non-possessive, and non-defensive interactions. Empathy and
open communication extended to dying persons and their loved ones is
essential (Dane and Miller, 1990; Lethem, 1999; Quinn, 1998). Other
means of communicating respect include engaging in diversity compe-
tent practice (Reese, Ahem, Nair, OFaire, and Warren, 1999), placing
the needs of the client at the focal point of any planning and intervention,
starting where the client is at, and handling confidential material respon-
sibly (Rice, Hicks, and Wiehe, 2000; Sheldon, 2000).
Finally, frameworks that articulate what constitutes quality end-of-
life from the perspective of dying persons are essential if the profession
is to honor its commitment to respecting and affirming the dignity and
worth of persons. Singer, Martin, and Kelner (1999), in an article not di-
rected specifically to social work, note that only experts taxonomies of
what constitutes quality end-of-life care currently exist. They call for
frameworks that arise from the lived perspectives of patients and fami-
lies.

BARRIERS TO THE DELIVERY OF EFFECTIVE

END-OF-LIFE CARE

Several barrierssome descriptive and others more empirically grounded

are addressed in the professional literature with regard to competent and
 Cheryl K. Brandsen 57

ethical practice. These barriers focus primarily on insufficient educa-

tional preparation of undergraduate and graduate social workers, and
role conflicts and ambiguities.
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The lack of intentional curricular content about dying and death in

BSW and MSW programs result in practitioners being ill-equipped to
work effectively in end-of-life settings (Dickinson, Sumner, and Freder-
ick, 1992; Christ and Sormanti, 1999; Sormanti, 1994). If preparations
happen, it is likely to occur in practice courses, human behavior courses,
or elective courses (Kovacs and Bronstein, 1999). When such education
does occur, Kramers research, based on a multi-method grief course
taught to social work graduate students, suggests that students gain
greater competence in working with grieving clients and also gain in-
creased cognitive and affective dimensions of death acceptance (1998).
Specific gaps in educational preparation are noted in terms of etiology
and treatment of pain in cancer (Glajchen, Blum, and Calder, 1995),
chronic pain (Sieppert, 1996), and drug therapies (Gordon, 2002).
Kramer (2003), surveying social work textbooks for content on ten criti-
cal areas in end-of-life care, found that such content was addressed in
only three percent of the 50 selected texts. At the level of post-degree
work, social work-related content in continuing education is often miss-
ing, and the cost and time away from work for on-going in-service work
is problematic for practitioners (Christ and Sormanti, 1999; Csikai and
Raymer, 2004).
Ambiguity related to social work roles in end-of-life care is a further
barrier. Social workers are sometimes unable to clearly articulate their
roles to other professionals (Brown, 1999; Christ and Sormanti, 1999;
Mizrahi and Abramson, 1985). Furthermore, other professionals expec-
tations about what social workers do are unclear; alternately, social work-
ers sometimes lack knowledge of the roles of other interdisciplinary team
members (Brown, 1999; Foster and Davidson, 1995; MacDonald, 1991;
Reese and Sontag, 2001). At times, roles between social workers and
other professionals overlap, leading to confusion and sometimes conflict
over the complexity of these roles (Abramson and Mizrahi, 1996;
Botsford, 2000; Davidson and Foster, 1995; Nardi, Ornelas, Wright, and
Crispell, 2001). Sometimes social work roles and activities stand in con-
flict with other worthy goals; for instance, social works emphasis upon
understanding and meeting psychosocial needs might be incommensu-
rate with efficient medical discharge planning. Beyond role ambiguity,
interdisciplinary communication challenges social workers and other
professionals (Back, 2000; Christ and Sormanti, 1999).
 58 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

Additional barriers cited in the literature include lack of funds for re-
search (Christ and Sormanti, 1999), and lack of empirical research on
how social work contributes to end-of-life care (Brandt and Cody,
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1994). Within end-of-life care settings, Christ and Sormanti further cite
a lack of agency support to try new techniques and interventions, and
Davidson and Foster (1995) note the lack of affirmation by agencies to
do grief and bereavement work. Reese and Raymer (2004), in their na-
tionwide study of hospice programs, demonstrate that providing ade-
quate social work services along with other care significantly reduces
overall hospice costs. Few studies of this kind have been undertaken,
however, thus keeping social works utility in cost-effective treatment
invisible. Christ and Sormanti (1999) note that strong social work lead-
ership in end-of-life care is lacking. Casarett, Karlawish, and Byock
(2002) argue that advocacy and activism, two strategies often effective
when quality of or access to care is deficient, is strangely lacking in
end-of-life care. Although they do not write as social workers, certainly
advocacy and activism are two strategies in which social workers
historically have demonstrated competency and commitment.

WHERE WE GO FROM HERE

Several conclusions are immediately apparent after reviewing the lit-

erature related to the social work profession and end-of-life care. First,
social workers are integral participants in developing and delivering
end-of-life care, and have been for quite some time. In direct practice
with persons who are dying and their loved ones, as members of inter-
disciplinary teams and community professionals, in their commitment
to ethical practice shaped by foundational values of the profession, and
in developing and implementing public policy to improve care for the
dying, social workers are active in and valued for the multiple tasks they
perform.
Second, social workers empirical documentation of their critical
roles and responsibilities in end-of-life care is weak. Because this re-
view centers on three main areas (roles and activities of social workers
in providing end-of-life care, core principles valued by social workers
in the provision of end-of-life care, and barriers to social work provision
of effective end-of-life care), a range of articles is included. Some arti-
cles present conceptual frameworks or models of care for particular
types of death. Many articles are discussions, often descriptive of social
work activities in end-of-life care, and prescriptive about what social
 Cheryl K. Brandsen 59

work could be doing differently in preparing practitioners to provide

better end-of-life care. Only a few articles, however, empirically inves-
tigate some aspect of social work and end-of-life care, a finding that is
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telling about social works involvement in empirical practice and end-

of-life care. The bright spot here is that more current publications (2000
and forward) are beginning to address this gap.3
With respect to where the profession goes in terms of setting an
agenda for end-of-life care, research must be a priority. Given limited
resources and infinite human need, if the profession hopes to be taken
seriously as critical to providing effective end-of-life care, it must be
able to demonstrate that it does indeed do so.
Setting a research agenda for the profession, however, is a complex
task. End-of-life care, often narrowly defined in terms of attending to
physical processes of dying, is now recognized as multi-dimensional in
scope. The social work profession with its person-in-environment fo-
cus, fields of practice that cover the life span, and its unique knowledge,
skill, and value base, is well-equipped to respond to the diverse chal-
lenges of end-of-life care. The breadth of the profession, however,
makes setting a professional agenda difficult. What areas does the pro-
fession give priority and who decides such priorities are only a few of
the difficult questions. In this issue, Bern-Klug, Kramer, and Linder de-
scribe the potential research agenda for social work in end-of-life and
palliative care.
One strategy to identifying and implementing a research agenda is
for the social work profession to draw from and build on other profes-
sional efforts to identify needed research areas. The National Consen-
sus Project for Quality Palliative Care (2004), for instance, sets forth
clinical guidelines for quality palliative care services that were arrived
at through a consensus process involving representatives, including so-
cial workers, from five major palliative care organizations in the United
States.4 Eight interdisciplinary domains of quality care emerged: struc-
ture and processes of care; physical aspects of care; psychological and
psychiatric aspects of care; social aspects of care; spiritual, religious,
and existential aspects of care; cultural aspects of care; care of the immi-
nently dying patient; and ethical and legal aspects of care. Each domain
includes assessment, information sharing, decision-making, care plan-
ning, and care delivery, and each domain identifies specific clinical
guidelines for practice. A close examination of the domains indicates
that the social work profession has made important contributions to
each of these domains in the past as evident from the earlier literature re-
view, and has the potential to add to each of these domains with further
 60 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

research, contributing both to the knowledge and skills of the profession

but also to this important interdisciplinary challenge.5 Furthermore, the
consensus building process bringing together diverse professions is a
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critical stepping stone to modeling effective implementation and deliv-

ery of interdisciplinary care in end-of-life settings.
A second strategy, in addition to interdisciplinary collaborations, is
for the social work profession to focus on itself in identifying and im-
plementing a research agenda. This was, in part, a piece of the agenda
for the first national Social Work Summit on End-of-Life and Palliative
Care held in March 2002 (Christ and Blacker, 2005). This is also, in
part, what the Social Work Leadership Development Awards Program
of the Project on Death in America is addressing as it moves forward.
What is important in both of these initiatives, in addition to the priorities
established,6 is the interactive processes, grounded in field representa-
tion methodologies,7 used to facilitate the group, gather ideas from so-
cial work leaders, and arrive at consensus about research priorities. To
the extent that the social work leaders participating in these consensus
activities are close to the ground with practice experience in end-of-life
care, the research priorities that emerge are important for shaping prac-
tice, policy, and social work education. Recalling Singer, Martin, and
Kelners concern, however, that only expert taxonomies exist of what
constitutes quality end-of-life care (1999), agenda setting must occur
not only by social work leaders but also those social workers whose ev-
ery-day practice focuses on providing professional care to dying per-
sons and their loved ones. These practitioners, either by themselves or
in collaboration with social work researchers, have an obligation to help
the profession operationalize its commitment to provide respectful and
individualized services that reflect what is truly important to clients.
The research methodologies must be empirically sound and also diverse,
and include quantitative and qualitative methodologies that capture the
full range of human experience.
Not only must social work researchers and practitioners collaborate
to conduct empirically sound research, they must find venues in which
to disseminate their work. Professional conferences, those specific to
social work as well as interdisciplinary conferences, lend themselves to
dissemination. Within the profession, perhaps it is time to consider seri-
ously the development of professional sections, similar to the organiza-
tional structure of other disciplines and professions (i.e., American
Sociological Association; American Philosophical Association). Within
such sections, focused presentations and extensive networking can oc-
cur. Similarly, publishing must occur in peer-reviewed journals specific
 Cheryl K. Brandsen 61

to social work as well as interdisciplinary journals. The creation of new

journals, such as the Journal of Social Work in End-of-Life & Palliative
Care, holds wonderful potential for bringing together the expertise of
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researchers and practitioners to develop a more substantive and signifi-

cant contribution to end-of-life care.
As the profession builds and carries out its research agenda, social
work education must attend to articulating and teaching core knowl-
edge and skill competencies for social work education and practice.
Some generic frameworks for conceptualizing key knowledge and
skill competencies already exist (Mularski, Bascom, and Osborne,
2001). Specific to social work, the Society for Social Work Leader-
ship in Health Care has set forth a competence checklist for social
workers in end-of- life care settings (Care at the end of life, 2000).
They argue that social workers need general knowledge of clinical is-
sues, bioethical principles, and interdisciplinary team work. Social
workers also need self-awareness about how they interact with diverse
patients, families, and teams as well as their own personal comfort
with death and dying issues. Finally, social workers need more spe-
cific clinical knowledge of and skill in such areas as understanding
disease courses, Advance Directive procedures and policies, re-
sources for funding and referrals, and engaging patients in making
end-of-life care wishes known. A similar sort of work is underway in
Michigan as an outcome of the Michigan Partnership for the Advance-
ment of End-of-Life Care, funded by the Robert Wood Johnson Foun-
dation (Brandsen and Carlsen, 2003). The most developed and
comprehensive set of social work competencies comes to the social
work profession as an extension of the facilitated process that oc-
curred at the national Social Work Leadership Summit (Gwyther et
al., 2005). Competencies related to knowledge, skills, and practice
values and attitudes in social work practice in palliative care are set
forth as a means to inform other professionals about what social work-
ers bring to this interdisciplinary work; these competencies also serve
as a platform for education, training, and research.
Finally, Kramer, Pacourek, and Hovland-Scafes (2003) analysis of
end-of-life content in social work textbooks is particularly instructive
for social work education. Ten content domains are identified through a
collaborative process. These include: the social work perspective on
end-of-life care; culture-, gender-, and age-relevant assessment of client
at the end-of-life; social work assessment and intervention with diverse
family forms at end-of-life; differential diagnosis and treatment in the
end-of-life context; communication with patients, families, and other
care providers; symptoms along continuum of illness and near time of
 62 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

death; pain, distress, and suffering management; loss, grief, and be-
reavement; ethical and legal issues; and health care systems, policy, and
advocacy. These domains serve as a useful framework for identifying
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needed curricular content, future textbook writing plans, and also re-
search agendas.

CONCLUSION

The profession of social work is keenly engaged in providing quality

end-of-life care. Such work is legitimized by the professions Code of
Ethics and supported by a large general knowledge and skill set that is
transferable to end-of-life care. Key areas for the profession to focus on
include generating empirically-based knowledge for practice and policy
analysis, and a system of social work education that addresses the
unique knowledge and skills needed to participate in end-of-life prac-
tice as competent and informed professional practitioners.

NOTES
1. Primary combinations of key words were combined with social work. These
combinations included social work and (1) death or dying; (2) terminal or palliative care,
end-of-life care, or hospice care; and (3) loss, grief, or bereavement. Databases searched
include Social Science Abstracts, Sociological Abstracts, MEDLINE, and CINAHL.
2. Policy statements related to end-of-life concerns include Client Self-Determina-
tion in End-of-Life Decisions, Health Care, Hospice Care, and Long-Term Care.
3. See, for instance, the special issue on end-of-life care in Health and Social Work,
29, 1, February 2004. See also Reese and Raymer (2004).
4. These organizations are: American Academy of Hospice and Palliative Medi-
cine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association,
Last Acts Partnership, and the National Hospice and Palliative Care Organization.
5. Other interdisciplinary efforts aimed at improving end-of-life care that are useful
to the social work profession include the Institute of Medicine report (Lunney, Foley,
Smith, and Gelband, 2003), the National Institute on Aging and National Institutes of
Health (Stahl, 2000), and a proposed gerontological end-of-life research agenda (Knebel
and Buckwater, 2002).
6. The top five priorities emerging from facilitated discussions with leaders in the
Project on Death in America include the following: social work evaluation research to
address needs in palliative care and at the end of life; social workers roles in palliative
and end-of-life context; social work interventions and evaluation research to address
loss, grief, and bereavement across the life span; underserved populations and multi-
cultural issues in palliative and end-of-life care; and social workers contributions to
interdisciplinary teams (Kramer, Christ, Francoeur, and Bern-Klug, 2004).
7. See, for instance, Broome, DeTurk, Kristjansdottir, Kanasta, and Ganeson, 2002.
 Cheryl K. Brandsen 63

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Date Received: 05/12/04

Date Revised: 08/13/04
Date Second Revision: 10/14/04
Date Accepted: 10/17/04