1
End-of-Life Decision Making and Care
2
3
ISSUE STATEMENT
4
5
Advances in health care have enabled people to live longer, even in the face of life-
6
limiting conditions, than would have been possible only a short time ago. Such advances
7
have the potential not only to increase survival time, but also to enhance quality of life. At
8
the same time, the growing availability of life-sustaining treatments presents complex
9
challenges for end-of-life care. Too often, however, individuals and families do not have
10
the opportunity to consider, before a health care crisis occurs, either the physiological or
11
psychosocial consequences of prolonging life. This approach to end-of-life decision
12
making is fueled, in part, by widespread reluctance to discuss either the limitations of
13
curative and life-sustaining treatments or the realities and uncertainties of the dying
14
process. At the same time, deep-seated social inequities pose barriers to individuals’ and
15
families’ options for, and informed decision making regarding, care at the end of life.
16
Rectifying such inequities and supporting clients’ end-of-life decision making constitute
17
key roles for social workers, who provide services in palliative and hospice care
18
programs, throughout the health care continuum, and across service delivery systems
19
(Csikai, 2008; NASW, 2004).
20
21
Individuals and families contemplating end-of-life care face a broad range of decisions,
22
each made within a specific cultural, legal, medical, psychosocial, and spiritual context.
23
Such decisions can include where a person plans to spend the final months, weeks, or
1
24
days before death; supports and services to maximize independence; goals and desired
25
strategies for alleviation of pain and other symptoms; and technological intervention, such
26
as cardiopulmonary resuscitation, mechanical ventilation, and artificial nutrition and
27
hydration, she or he wishes to forego or receive.
28
29
Many people do not communicate their end-of-life care preferences to either their
30
loved ones or health care professionals. Unfortunately, this leaves many family
31
members (both legally recognized family and family of choice) ill prepared to
32
determine the care their loved ones might have wanted. Advance care planning—
33
which includes discussion of end-of-life care choices and documentation of those
34
choices in advance directives—is a key strategy to maximize client self-determination
35
in end-of-life decision making.
36
37
Programs based on the National POLST (Physician Orders for Life-Sustaining
38
Treatment) Paradigm offer individuals another option to direct their end-of-life care.
39
POLST, which is known by different names across states, refers to an individualized,
40
portable set of medical orders to guide treatment of people living with serious or life-
41
limiting illnesses (POLST, 2012). A growing number of states have endorsed
42
programs based on the National POLST Paradigm, and names for such programs vary.
43
This evidence-based paradigm is not intended to replace advance directives; rather, it
44
complements the advance care planning process (Bomba, Morrissey, & Leven, 2011;
45
Pile & Pole, 2013).
46
2
47
The U.S. judicial, legal, and regulatory record regarding end-of-life decision making is
48
complex. During the latter part of the 20th century and the beginning of the 21st
49
century, the cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo drew
50
national attention to the issue of withdrawing life-sustaining treatment for individuals
51
in a persistent vegetative state. The Patient Self-Determination Act (1990) has
52
mandated that Medicare- and Medicaid-funded health care institutions inquire and
53
provide information about advance directives, and all 50 states and the District of
54
Columbia now have statutes regarding advance directives. Yet, 20 years later, an
55
attempt by the Centers for Medicare & Medicaid Services (CMS) to include advance
56
care planning as a reimbursable service within the newly created Medicare annual
57
wellness visit—a provision for which NASW had advocated—met with such political
58
opposition that the decision was rescinded within days of implementation (National
59
Hospice and Palliative Care Organization, 2011; Pear, 2011).
60
61
In recent years, some states have enacted right-to-know laws, such as California’s
62
Right to Know End-of-Life Options Act (2009) and New York’s Palliative Care
63
Information Act (2010), to ensure that individuals and families receive information
64
about the full range of end-of-life care options legally available within a given state.
65
At the same time, legislation addressing conscience clauses (also known as provider
66
refusal laws) has been considered or passed in a number of states. In such
67
deliberations, NASW cautions that social workers neither discriminate against nor
68
abandon clients in need of professional services (NASW, 2010, 2011).
69
3
70
The issue of physician aid in dying has prompted, perhaps, the greatest controversy
71
regarding end-of-life decision making. Though the first state bill was introduced in
72
Florida in 1967 (Compassion & Choices, 2013b), it was almost 30 years before
73
Oregon became the first state to legalize physician aid in dying with the Death with
74
Dignity Act. The same year Oregon implemented the law, the U.S. Supreme Court
75
ruled (Vacco v. Quill, 1997; Washington v. Glucksberg, 1997) that mentally
76
competent people with terminal illness do not have a constitutional right to physician
77
aid in dying—while upholding the right to pain management, including palliative
78
sedation (Altilio, 2011). These rulings did not prevent states from legalizing physician
79
aid in dying, however. Since that time, Washington, Montana, and Vermont have also
80
legalized physician aid in dying, and initiatives to both legalize and criminalize
81
physician aid in dying are underway in multiple other states (Compassion & Choi ces;
82
2013a; Death with Dignity National Center, 2013).
83
84
In 2001, U.S. Attorney General John Ashcroft filed suit against Oregon to overturn the
85
Death with Dignity Act and stop its proliferation to other states (Oregon v. Ashcroft,
86
2004). Three years later, a federal appeals court ruled against the Attorney General and
87
upheld the Oregon statute. The case proceeded to the Supreme Court, which upheld the
88
Death with Dignity Act in 2006 (Gonzales v. Oregon). NASW, in collaboration with
89
other organizations representing mental health professionals, filed two friend of the
90
court briefs (2002 and 2005) in response to these court challenges. In both briefs,
91
NASW and other members of the Coalition of Mental Health Professionals submitted
92
expert information supporting three positions:
4
93
• Adequate diagnostic tools and protocols are available to assess the mental capacity of
94
a person with terminal illness who desires to hasten death. . . .
95
• A terminally ill patient can be capable of making a reasoned decision to hasten d eath.
96
[The Coalition discouraged use of the term suicide in this context. Accordingly,
97
NASW no longer uses the term physician-assisted suicide.] . . .
98
• Involvement of mental health professionals in situations involving end-of-life
99
decision-making, including serving in the role outline in the ODWDA [Oregon Death
100
with Dignity Act], is considered to be appropriate. (Brief of Coalition of Mental
101
Health Professionals, 2002 [pp. 8, 17, & 24], 2005 [pp. 8, 14, & 22])
102
103
At the same time, the Coalition of Mental Health Professionals did “not take a position
104
. . . on either the general issue of ‘physician-assisted suicide’ or the more particular
105
issue of the legitimacy of prescribing controlled substances under the ODWDA” (Brief
106
of Coalition of Mental Health Professionals, 2002, p. 3). Rather, the Coalition clarified
107
that provision of mental health “services to individuals considering hastening death
108
does not indicate support for hastening of death itself” (Brief of Coalition of Mental
109
Health Professionals, 2002 [p. 3], 2005 [p. 3]).
110
111
Within the social work profession, a variety of opinions still exists regarding the
112
legalization of physician aid in dying. Recognizing this diversity, and consistent with
113
previous policy statements (NASW, 2003, 2012), NASW neither supports nor opposes
114
legalization of physician aid in dying. In states in which physician aid in dying is legal,
115
however, NASW affirms both the right of individuals to choose this option and the
5
116
responsibility of health care systems and providers to honor clients’ choices, as well as
117
to create and abide by state policies and procedures that prevent abuse of individuals in
118
vulnerable situations. Furthermore, NASW upholds the social work role in clients’
119
end-of-life decision-making processes and encourages further study, both within and
120
beyond the profession, of the many complex issues associated with physician aid in
121
dying.
122
123
U.S. policy and health care practice concerning end-of-life decision making center on
124
the bioethical principle of respect for individual autonomy (O’Donnell, 2011). This
125
principle dovetails with social workers’ promotion of self-determination, inherent in
126
the profession’s ethical mandate to respect the dignity and worth of every person
127
(NASW, 2008). At the same time, social workers realize that autonomy is not valued
128
equally by all; some people, especially within communities of color and some religious
129
traditions, prioritize family decision making or defer to the will of a divine power
130
(Borgmeyer, 2011; Bressi Nath, Hirschman, Lewis, & Strumpf, 2008; Bullock, 2011a,
131
2011b; del Río, 2010; McCormick, 2011; Wittenberg-Lyles, Villagran, & Hajek,
132
2008). Meanings attributed to concepts such as suffering (Morrissey, 2011) and good
133
death (Ko, Cho, Perez, Yeo, & Palomino, 2013) also vary widely. Moreover, social
134
inequities related to age, disability, gender identity, geography, immigration status,
135
inadequate health coverage, language barriers, poverty, sexual orientation, and other
136
cultural factors differentially affect individuals’ and families’ access to high-quality
137
end-of-life care, thereby diminishing their ability to provide informed consent or
138
refusal when faced with treatment decisions.
6
139
140
Thus, “a one-size-fits-all approach to medical decision making does not work in a
141
multicultural and pluralistic society” (del Río, 2010, p. 145). Consequently, support for
142
clients’ end-of-life decision making entails not only respect for each individual’s right
143
to direct her or his end-of-life care, but also cultural and linguistic competence to
144
ensure maximum participation (NASW, 2007) and advocacy to eliminate health
145
disparities and related injustices (Mackelprang & Mackelprang, 2005). Balancing these
146
tenets in in an environment of cost containment (Jennings & Morrissey, 2011) and in
147
relation to other professions, whose standards and ethics may differ from those of
148
social work (Erlbaum-Zur, 2005), presents challenges for social workers. These
149
challenges notwithstanding, the social work profession remains committed to
150
maximizing knowledge of, and access to, end-of-life care that is congruent with the
151
unique values and goals of each individual, family, and community.
152
153
POLICY STATEMENT
154
NASW promotes respect for dignity, quality of life, and self-determination, as defined by
155
each person approaching the end of life. Accordingly, NASW supports legislation,
156
policies, practices, programs, regulations, and research that promote the following
157
principles and goals related to clients’ end-of-life decision making and care:
158
• consumer education and health care provider communication about the full range of
159
options for end-of-life care and the potential benefits and risks associated with each
160
option
161
• clients’ ability to exercise the full range of legally available options as the end of life
7
162
approaches
163
• equitable access to affordable, comprehensive, person- and family-centered services,
164
including palliative and hospice care, to maximize physical, psychological, social, and
165
spiritual quality of life
166
• sustainable public and private reimbursement for hospice and palliative care, including
167
(but not limited to) the Medicare hospice benefit, services available to Medicaid
168
beneficiaries, and state health insurance marketplace plans
169
• preservation of economic support programs and expansion of residential care and home-
170
and community-based services, including support for family caregivers, to enable people
171
to live and die in their setting of choice
172
• tools and training to facilitate culturally and linguistically appropriate care
173
• multidimensional approaches to prevent and alleviate pain and other symptoms
174
common at the end of life
175
• engagement in a process of advance care planning, with respect for each person’s
176
decision-making capacity, values, and choices
177
• health care providers’ honoring of advance directives, with consideration of each
178
individual’s values and unique medical context
179
• support for the role and responsibilities of health care agents and surrogates
180
• expansion of state programs based on, and education of health care providers regarding,
181
the National POLST (Physician Orders for Life-Sustaining Treatment) Paradigm
182
• continuity of care across service settings, with particular attention to client transitions
183
between health care providers and settings
184
• prevention of client abandonment during transitions of care and in situations in which
8
185
health care providers’ values conflict with clients’ choices
186
• health care provider self-awareness of personal values about dying and death
187
• support for health care providers in coping with professional grief reactions common in
188
end-of-life care
189
• respect for, and integration within interdisciplinary teams of, the multifaceted social
190
work role in end-of-life decision making and care (including social work presence, if
191
requested by individuals or families, at the end of life), in accordance with the NASW
192
Code of Ethics, NASW standards of practice, and state licensure laws and regulations
193
• expansion of social work curricula and research addressing end-of-life care
194
• widespread access to professional development opportunities (including mentoring,
195
supervision, consultation, continuing education, and postgraduate training programs)
196
specific to end-of-life care
197
• continued study and education, both within and beyond the social work profession, to
198
enhance understanding of the complex issues associated with physician aid in dying.
199
200
REFERENCES
201
Altilio, T. (2011). Palliative sedation: A view through the kaleidoscope. In T. Altilio &
202
S. Otis-Green (Eds.), Oxford textbook of palliative social work (pp. 661–669). New
203
York: Oxford University Press.
204
Bomba, P. A., Morrissey, M. B., & Leven, D. C. (2011). Key role of social work in
205
effective communication and conflict resolution process: Medical Orders for Life -
206
Sustaining Treatment (MOLST) program in New York and shared medical decision
207
making at the end of life. Journal of Social Work in End-of-Life & Palliative Care,
9
208
7, 56–82. doi:10.1080/15524256.2011.548047
209
Borgmeyer, T. (2011). The social work role in decision making: Ethical, psychosocial,
210
and cultural perspectives. In T. Altilio & S. Otis-Green (Eds.), Oxford textbook of
211
palliative social work (pp. 615–624). New York: Oxford University Press.
212
Bressi Nath, S., Hirschman, K. B., Lewis, B., & Strumpf, N. E. (2008). A place called
213
LIFE: Exploring the advance care planning of African-American PACE enrollees.
214
Social Work in Health Care, 47, 277–292. doi:10.1080/00981380801985432
215
Brief of amicus curiae Coalition of Mental Health Professionals, Gonzales v. Oregon,
216
546 U.S. 243 (2006). Retrieved from
217
www.socialworkers.org/assets/secured/documents/ldf/briefDocuments/Oregon%20v
218
%20Gonzales%20(ashcroft)%20brief%20final.pdf
219
Brief (No. 02-35587) of the Coalition of Mental Health Professionals as amicus curiae
220
in support of plaintiffs/appellees, Oregon v. Ashcroft, 368 F.3d 1118, 1128 (9th Cir.
221
2004), (No. 02-35587) aff’d sub nom. Gonzales v. Oregon, 546 U.S. 243 (2006).
222
Retrieved from
223
www.socialworkers.org/ldf/brief_bank/searchResults.asp?searchInfo=Oregon+v.+A
224
shcroft&whichSrch=0&searchVal=Oregon+v.+Ashcroft&keyword=Oregon&Submi
225
t=GO%3E
226
Bullock, K. (2011a). Advance directives from a social work perspective: Influence of
227
culture and family dynamics. In T. Altilio & S. Otis-Green (Eds.), Oxford textbook
228
of palliative social work (pp. 625–635). New York: Oxford University Press.
229
230
Bullock, K. (2011b). The influence of culture on end-of-life decision making. Journal
of Social Work in End-of-Life & Palliative Care, 7, 83–98.
10
231
232
233
234
235
236
doi:10.1080/15524256.2011.548048
Compassion & Choices. (2013a). In the courts. Retrieved from
http://www.compassionandchoices.org/what-we-do/in-the-courts/
Compassion & Choices. (2013b). Timeline. Retrieved from
http://www.compassionandchoices.org/who-we-are/timeline/
Csikai, E. L. (2008). End-of-life decisions. In T. Mizrahi & L. E. Davis (Eds.-in-
237
Chief), Encyclopedia of social work (20th ed. Vol. 4, pp. 138–141). Washington,
238
DC, and New York: NASW Press and Oxford University Press.
239
Death with Dignity Act, 3 Ore. Rev. Stat. §§ 127-800-995 (1994–1999).
240
Death with Dignity National Center. (2013). Death with dignity around the U.S.
241
Retrieved from http://www.deathwithdignity.org/advocates/national
242
del Río, N. (2010). The influence of Latino ethnocultural factors on decision making
243
at the end of life: Withholding and withdrawing artificial nutrition and hydration.
244
Journal of Social Work in End-of-Life & Palliative Care, 6, 125–149.
245
doi:10.1080/15524256.2010.529009
246
Erlbaum-Zur, P. (2005). Attitudes of long-term care social workers toward physician-
247
assisted-suicide. Journal of Social Work in Long-Term Care, 3, 175–197.
248
doi:10.1300/J181v03n03_12
249
Gonzales v. Oregon, 546 U.S. 243 (2006).
250
Jennings, B., & Morrissey, M. B. (2011). Health care costs in end-of-life and palliative
251
care: The case for ethical reform. Journal of Social Work in End-of-Life & Palliative
252
Care, 7, 300–317. doi:10.1080/15524256.2011.623458
253
Ko, E., Cho, S., Perez, R. L., Yeo, Y., & Palomino, H. (2013). Good and bad death:
11
254
Exploring the perspectives of older Mexican Americans. Journal of Gerontological
255
Social Work, 56, 6–25. doi:10.1080/01634372.2012.715619
256
Mackelprang, R. W., & Mackelprang, R. D. (2005). Historical and contemporary issues
257
in end-of-life decisions: Implications for social work. Social Work, 50, 315–324.
258
McCormick, A. J. (2011). Self-determination, the right to die, and culture: A literature
259
review. Social Work, 56, 119-128. Retrieved from
260
http://www.biomedsearch.com/article/Self-determination-right-to-die/254311527.html
261
Morrissey, M. B. (2011). Phenomenology of pain and suffering at the end of life: A
262
humanistic perspective in gerontological health and social work. Journal of Social
263
Work in End-of-Life & Palliative Care, 7, 14–38. doi:10.1080/15524256.2011.548045
264
National Association of Social Workers. (2003). Client self-determination in end-of-life
265
decisions. Social work speaks: National Association of Social Workers policy
266
statements, 2003–2006 (6th ed., pp. 46–49). Washington, DC: NASW Press.
267
National Association of Social Workers. (2004). NASW standards for palliative & end of
268
life care. Retrieved from
269
http://www.socialworkers.org/practice/bereavement/standards/standards0504New.pdf
270
National Association of Social Workers. (2007). Indicators for the achievement of the
271
NASW standards for cultural competence in social work practice. Retrieved from
272
http://www.socialworkers.org/practice/standards/NASWCulturalStandardsIndicators20
273
06.pdf
274
National Association of Social Workers. (2008). Code of ethics of the National
275
Association of Social Workers. Washington, DC: Author. Retrieved from
276
http://www.socialworkers.org/pubs/code/default.asp
12
277
National Association of Social Workers. (2010, May). Social workers and conscience
278
clauses [Legal Issue of the Month]. Retrieved from
279
http://www.socialworkers.org/ldf/legal_issue/2010/201005.asp
280
National Association of Social Workers. (2011, May). Provider refusal and conscience
281
clause controversies [Legal Issue of the Month]. Retrieved from
282
http://www.socialworkers.org/ldf/legal_issue/2011/052011.asp?back=yes
283
National Association of Social Workers. (2012). End-of-life care. Social work speaks:
284
National Association of Social Workers policy statements, 2012–2014 (9th ed., pp. 116–
285
122). Washington, DC: NASW Press.
286
National Hospice and Palliative Care Organization. (2011, January 4). Hospice community
287
disappointed in administration’s decision and reminds all Americans of the value of
288
advance care planning [Press release]. Retrieved from http://www.nhpco.org/press-
289
room/press-releases/medicare-eol-consult
290
O’Donnell, P. (2011). Ethical considerations in palliative care: An overview. In T. Altilio &
291
S. Otis-Green (Eds.), Oxford textbook of palliative social work (pp. 605–613). New
292
York: Oxford University Press.
293
294
Oregon v. Ashcroft, 368 F.3d 1118, 1128 (9th Cir. 2004), (No. 02-35587) aff’d sub
nom. Gonzales v. Oregon, 546 U.S. 243 (2006).
295
Palliative Care Information Act, 331 NY Public Health Law § 2997-C (2010).
296
Patient Self-Determination Act, 42 U.S.C. §§ 1395i-3, 1395l, 1395cc, 1395mm, 1395bbb,
297
298
299
1396a, and 1396r (1990).
Pear, R. (2011, January 4). U.S. alters rule on paying for end-of-life planning. The New York
Times. Retrieved from
13
300
http://www.nytimes.com/2011/01/05/health/policy/05health.html?partner=rss&emc=rss&_
301
r=0
302
Pile, C., & Pole, L. (2013, Spring). Virginia POST: Improving patient-physician
303
communication about end of life care. Age in Action, 28(2). Retrieved from
304
http://www.sahp.vcu.edu/vcoa/newsletter/ageaction/agespring13.pdf
305
POLST: Physician Orders for Life-Sustaining Treatment Paradigm®. (2012). About the
306
national POLST paradigm. Retrieved from http://www.polst.org/about-the-national-
307
polst-paradigm/
308
Right to Know End-of-Life Options Act, Cal. Health and Safety Code §§ 442–442.7 (2009).
309
Vacco v. Quill, 521 U.S. 793 (1997).
310
Washington v. Glucksberg, 521 U.S. 702 (1997).
311
Wittenberg-Lyles, E., Villagran, M. M., & Hajek, C. (2008). The impact of
312
communication, attitudes, and acculturation on advance directives decision-making.
313
Journal of Ethnic & Cultural Diversity in Social Work, 17, 349–364.
314
doi:10.1080/15313200802467874
14