Professional Documents
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Journal of Social Work in End - Of-Life & Palliative Care Brand Sen 2005
Journal of Social Work in End - Of-Life & Palliative Care Brand Sen 2005
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
Downloaded by [University of Aberdeen] at 02:12 03 October 2014
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
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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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
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
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
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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CORE PRINCIPLES
Self-Determination
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
Holistic Care
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.
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.
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
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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