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END OF LIFE 
DEBATE

THE ROLE OF SOCIAL WORKERS IN THE END-OF-LIFE 
DEBATE

       Although many articles and books discuss the ethics of end-of-life issues, 
few publications are written specifi cally for social workers and social work 
students. The lack of relevant literature is problematic because social 
workers have different ethical obligations than other health care professions 
who work with clients who are contemplating assisted suicide. This paper will 
analyze the ethical dilemma that social workers face in end-of-life issues by 
reviewing the material available to social workers such as the NASW Code of 
Ethics and the relevant NASW Policy Statement. This paper fi nds that the different 
sources of information provided by NASW do not fully address the complexities 
surrounding the social work profession and end-of-life issues. Additional training 
and continuing education courses should be offered and a stronger policy 
statement is needed that explores the complexities faced by social workers in end-
of-life care.

          dvances in medical capabilities and technology have recently made 
it possible to extend life through artifi cial means (NASW, 2002). The 
National Association of Social Workers (NASW) acknowledges that, “unwanted 
utilization of medical technology may lead to a lessened quality of life, loss of 
dignity, and a loss of integrity for patients” (NASW, 2002, p.60). Social workers 
are being called upon to deal with quality of life issues as well as choices related 
to assisted suicide. Because of its recent and sudden growth mixed with the 
unavailability of clear guidelines, end-of-life care is an area of practice that 
many social workers are unprepared and unable to deal with effectively 
(Csikai & Raymer, 2003). To determine the appropriate course of action for 
end-of-life care, social workers must examine the pertinent resources, including 
NASW policy statements, available state guidelines, and the NASW Code of 
Ethics. Reviewing the available material for social workers reveals that current 
policy and resources for social workers are inadequate and the issue needs to be 
addressed further.

Jennifer Zaleski

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NASW Policy Statement

       The NASW frequently publishes policy statements to help guide social 
workers in ethical dilemmas not specifi cally covered in the Code of Ethics. The 
NASW policy statement, “Client Self-Determination in End-of-Life Decisions,” 
states that client self-determination is “the right of the client to determine the 
appropriate level, if any, of a medical intervention and the right of clients to 
change their wishes about their treatment as their condition changes over time 
or during the course of their illness” (2003, p. 59). The appropriate role of 
social workers in end-of-life care is to help patients express their thoughts and 
feelings, to facilitate exploration of alternatives, and to deal with grief and loss. 
This policy statement justifi es social workers’ facilitation of a client’s end-of-life 
decision making process, although it allows a caveat for those social workers 
who wish not to participate when it states that “social workers are permitted to 
participate in assisted suicide depending on their personal beliefs, attitudes, and 
value systems” (NASW, 2003, p. 61). 

The Oregon Death with Dignity Act 

      Because Oregon is the only state where physician-assisted suicide has 
been legalized, the Death with Dignity Act is a model through which the 
role of social workers in the end-of-life debate can be explored. Whereas a 
doctor is committed to the benefi cence of the patient, social workers in 
Oregon are committed to fostering the client’s self-determination by providing 
information about assisted suicide, answering questions, and forming a trusting 
relationship, thus empowering the client to make autonomous decisions about how 
to live out his or her fi nal days (Ganzini, et al., 2004).  The values and mission of 
social work distinguish social workers from other professions; therefore, social 
workers must handle assisted suicide differently than members of other 
professions. 
   The Death with Dignity Act legalizes physician-assisted suicide 
(Ganzini, et al., 2004) for terminally ill Oregon residents who are 18 years or 
older with a life expectancy of six months or less, as diagnosed by a primary 
physician and a consulting physician. The Death with Dignity Act enacts 
procedural safeguards to determine eligibility for a lethal prescription. In order to 
be considered for this lethal dose, a patient must have a terminal illness with 
only six months to live, make a written request for a prescription, and two oral 
requests, which must be separated by at least 15 days (Werth & Wineberg, 2005). 

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The prescribing physician must inform the patient about alternatives to lethal 
medication, as well as request that family members be notifi ed of the patient’s 
decision. It is also the responsibility of the prescribing physician to assess 
whether the patient’s decision is informed and voluntary, and two additional 
people are to serve as witnesses.  Physicians are required to establish patient 
competency and complete a patient assessment prior to prescribing a lethal 
prescription.      
      Eligibility for a lethal prescription under the Death with Dignity Act 
also requires that the patient’s competency be established. Competency is 
usually assumed unless a court has declared the person incompetent or a mental 
illness raises doubts about competence (Farrenkopf & Bryan, 1999). A patient 
can establish mental capacity by showing he or she can make clear choices, 
is able to understand and accurately apply medical information to his or her 
condition, and can demonstrate internally consistent reasoning (Farrenkopf & 
Bryan). If a physician fi nds the patient’s judgment impaired, they must refer the 
patient to a psychologist or a psychiatrist for a more thorough assessment (Werth 
& Wineberg, 2005). During this assessment, the patient should demonstrate his 
or her understanding of information relevant to his or her decision, such as the 
consequences of the decision and the risks and benefi ts of alternatives.

NASW Code of Ethics

Service
     “Social workers elevate service to others above self-interest. Social 
workers draw on their knowledge, values, and skills to help people in need and 
to address social problems” (NASW, 2000, Ethical Principles, para 2). Social 
workers are obligated to respect a client’s right to self-determination, even when 
the client’s goals confl ict with the worker’s individual moral framework. Those 
opposed to the Act may argue that the principle of service is limited to those 
acts which pose no harm to the client or others. John Stuart Mill (1975) justifi es 
interfering with autonomy only if it prevents infl iction of harm upon others, not 
oneself, when he stated, “the only purpose for which power can be rightfully 
exercised over any member of a civilized community, against his will, is to 
prevent harm to others … Over himself, over his own body and mind, the 
individual is sovereign” (p. 11). Supporters for the Death with Dignity Act also 
assert that a client’s sense of “human worth” increases if he or she is able to gain 
control over the dying process (Farrenkopf & Bryan, 1999).

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Social Justice
        “Social workers are sensitive to cultural and ethnic diversity and strive 
to end discrimination, oppression, poverty, and other forms of social injustice” 
(NASW, 2000, Preamble, para 2). It is the responsibility of social workers to 
help meet the needs of all populations, especially those who are vulnerable and 
oppressed. Critics of the Death with Dignity Act have expressed a fear that people 
who choose physician assisted suicide would be uneducated, poor, uninsured, or 
receiving inadequate end-of-life care (Csikai & Manetta, 2003). Some critics 
have suggested that people would turn to assisted suicide so as to not burden 
their families. However, palliative care is covered through the Oregon Health 
Plan. As a result, people do not have to worry about bankrupting their loved 
ones (Werth & Wineberg, 2005). In addition, 98% of those who have utilized 
physician assisted suicide have had private insurance or were covered by 
Medicare or Medicaid. While these reports suggest that the Death with Dignity 
Act does not target the poor, the issue needs to be examined in more depth.

Dignity and Worth of a Person
        At the forefront of arguments surrounding social workers and the Death 
with Dignity Act is the dignity and worth of a person. It is the responsibility 
of social workers to “promote clients’ socially responsible self-determination” 
(NASW, 2000, Ethical Principles, para 4). Physician collected data has high-
lighted the importance of self-determination on end-of-life decisions. Patients 
have expressed that their reasons for choosing physician assisted suicide include 
future loss of control, being a burden, being dependent on others for personal 
care, loss of dignity, being restricted to bed more than 50% of the time, and 
experiencing severe depression (Csikai & Manetta, 2002). The values of the 
social work profession refer to strongly-held beliefs about the individual’s right 
to free choice and opportunity (Hepworth et al., 2003). Supporters maintain 
that the law is benefi cial even to those terminally ill people who do not utilize 
a lethal prescription, because they gain peace of mind from knowing that the 
end-of-life is under their control (Greenhouse, 2005), illustrating the importance 
of autonomy on client satisfaction.
          “Social workers may limit clients’ right to self-determination when, in the 
social workers’ professional judgment, clients’ actions or potential 
actions pose a serious, foreseeable, and imminent risk to themselves or others” 
(NASW, 2000, Social Workers’ Ethical Responsibilities to Clients, para 2). This 
statement asks social workers to limit clients’ self-determination in some cases, 

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but there is no clear distinction as to what actions will pose imminent risks for 
clients. Social workers have previously been advised that upholding the client’s 
right to self-determination is a pillar of social work, but are now being instructed 
that upholding the benefi cence of the client may now take precedent. 

Competence
     “Social workers should provide services and represent themselves as 
competent only within the boundaries of their education, training, license, 
certifi cation, consultation received, supervised experience, or other relevant 
professional experience” (NASW, 2000, 1.04 Competence, para a). NASW 
does not defi ne at what point social workers have an obligation to participate in 
end-of-life care, or at what point one is considered competent in a given 
area. “When generally recognized standards do not exist with respect to an 
emerging area of practice, social workers should exercise careful judgment 
and take responsible steps to ensure the competence of their work and to 
protect clients from harm” (NASW, 2000, 1.04 Competence, para c). Reamer 
(1998) suggested that social workers take into account a number of resources 
when encountering an ethical challenge: ethical theory, literature on ethical 
decision making strategies, social work practice theory and research, relevant 
laws and regulations, agency policies, and other relevant codes of ethics. The 
NASW also calls for state chapters to encourage their members to participate in 
local, state, and national level committees and task forces to study the issues of 
end-of-life care, in order to better inform themselves (Csikai & Manetta, 2002). 
In the absence of generally recognized standards, social workers should refer to 
the guidelines and principles listed in the Code of Ethics.

Recommendations

Practice Recommendations
        Working with clients who are making end-of-life decisions is an area of 
discomfort to many people, including social workers. Social workers should be 
aware of any confl icts between personal and professional values and deal with 
them responsibly (NASW, 1996). Social workers should be informed of current 
federal and state legislation, and have an understanding of how this legislation 
intersects with their own values and beliefs. 
    Neither the Code of Ethics nor the policy statement addresses the 
relative importance of values surrounding the end-of-life debate. In one study, 
many social workers expressed views that were inconsistent with the policy 

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statement that defi nes end-of-life decisions as, “the choices made by a person 
with a terminal condition” (Manetta & Wells, 2001). Over half of the participants 
in this study favored physician assisted suicide even in situations where there 
was no fatal illness present, which is inconsistent with the Death with Dignity 
Act. This study illustrates how social workers’ personal beliefs and values can be 
inconsistent with NASW standards or state guidelines, and it demonstrates the 
importance of addressing this issue in greater detail. 

Policy Recommendations
       Although Oregon is the only state with physician-assisted suicide, it is 
important for social workers in all other states to advocate for the increased 
quality of care of patients at the end of their lives. Social workers should 
specifi cally advocate for public policy that respects clients’ rights to 
self-determination. Some of the most critical barriers to optimal end-of-life 
care are limited availability and coverage, ineffective service delivery, and poor 
provider communication (Yabroff & Mandelblatt, 2004). A large part of 
overcoming these and other barriers should be achieved through continuing 
education and training. 
     Social workers need more guidelines and guidance to determine the 
proper course of action when working with clients who are contemplating assisted 
suicide. A stronger policy statement is needed that explores the complexities 
faced by social workers in end-of-life care, rather than simply exploring the 
issue of assisted suicide. This policy statement should outline in greater detail 
the role and responsibilities of social workers, formally address the confl ict 
between social workers’ professional and personal values, and mandate that 
social workers receive more education and training in order to improve their 
competency in end-of-life issues. 

Conclusion

       Social workers have a different role in end-of-life care because of their 
unique purpose and perspective. In order to make ethical decisions, social 
workers must examine state guidelines, NASW policy statements, and the Code 
of Ethics, as well as their own values and beliefs. The resources available to 
social workers for ethical dilemmas, such as the Code of Ethics and NASW 
policy statements, can further complicate decision-making rather than help 
to distinguish the ‘right’ answers. A stronger and clearer policy statement is 
necessary to address the complexities surrounding end-of-life issues. 

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Training should be offered to social workers entering the fi eld of aging, and more 
continuing education courses should be mandated for social workers who are 
continuing in the fi eld. Social workers can no longer afford to have only a vague 
understanding of prevailing ethical standards (Jayaratne et al., 1997).

References

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Csikai, E.L. & Manetta, A. (2002). Preventing unnecessary deaths among older 
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Csikai, E.L., & Reamer, M. (2003). The social work end of life care 
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Farrenkopf, T. & Bryan, J. (1999). Psychological consultation under Oregon’s 
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Ganzini, L. & Farrenkopf, T. (1998). Mental health consultation and referral. In 
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Ganzini, L., Harvath, T., Jackson, A., Goy, E.R., et al. (2004). Experiences of 
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Greenhouse, L. (2005). Justice explores U.S. authority over states on assisted 
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Hepworth, D.H., Rooney, R.H., & Larsen, J.A. (2003). Direct social work 
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Jayaratne, S., Croxton, T., & Mattison, D. (1997). Social work professional 
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Werth, J.L., & Wineberg, H. (2005). Critical analysis of the Oregon Death with 
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JENNIFER ZALESKI is a second year master’s student at CUSSW within the 
Policy Practice method, in the International Social Welfare fi eld of practice. 
She is currently an intern at the Department for Economic and Social Affairs 
of the United Nations. She holds a bachelor’s degree in psychology from the 
University of California, Los Angeles. Her e-mail address is jmz2107@colum-
bia.edu.

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