DO THE RIGHT T HING: SOCIAL WORK ETHICS
Client self determination in end-of-life decisions

By Elaine P. Congress, DSW, Chair of Committee on Ethics and Professional Standards, and
David Chollar, ACSW, Member, Committee on Ethics and Professional Standards
(May 1995)

CASE VIGNETTE

Seventy-five year old Mr. Jones and his family had just received very upsetting news. Mr. Jones had always prided himself on having excellent health and on his ability to live independently. For the last six months, Mr. Jones had begun to lose weight and had developed a chronic cough. Medical tests confirmed his worst fears. He had inoperable lung cancer and he was given only six months to live. His two adult children had very different reactions. His daughter could not believe the diagnosis. His son insisted that everything must be done to keep his father alive as long as possible. He was concerned about finances, though, as he had just lost his job and his father was covered by Medicaid. Mr. Jones worried, however, that he would become a burden on his family. He had seen a television program about assisted suicides and wanted to discuss this possibility. How should an ethical social worker work with Mr. Jones and his family?

Advanced medical technology and increasing life expectancy has made it possible to keep people alive for much longer than was previously imagined. This raises very complex, disturbing ethical choices for clients, their families, and health care professionals. We as social workers are concerned about the quality of life for our clients, as well as maximizing social work self determination for our clients and their families.

NASW's 1993 Delegate Assembly issued a policy statement about end of life decisions and the implications of this policy were discussed at the Chapter's 1994 Annual Ethics Committee Conference. Recognizing the diversity of opinions about end of life decisions as well as conflicting state laws, the policy statement affirms the right of the individual to determine the level of his or her care. By applying the NASW Code of Ethics, the NASW policy statement on End of Life decisions, and existing federal and state legislation the social worker might adapt the following guidelines in working with Mr. Jones and his family:

  1. The social worker should be aware of advance directives such as living wills and the health care proxy and be able to discuss these documents with clients. Advance directives provide means for a client to have control over end-of-life decisions. In using a living will, the client makes choices about future medical treatment, while a health care proxy involves naming a person who may be able to make health care decisions for the client if he is unable to make them for himself. The health care proxy is the most commonly recognized form of advanced directive in New York State. Informing and educating clients about the health care proxy and living will is a very important function for the social worker in health care.

    Many clients and their loved ones will resist discussions about advance directives. A social worker should be sensitive to this and should not push his or her own agenda on the client and/or the client's family. Mr. Jones may have to decide which of his children would be more likely to make health care decisions similar to what he would choose for himself.

    There is the potential for family conflict surrounding advance directives. For example, Mr. Jones's daughter and son may have very different ideas about what is appropriate for their father and an important role for the social worker might be to mediate between this client and different members of his family.

  2. The social worker should work to insure that all clients have equal access to desired health care. Mr. Jones's son has raised the concern that health care will not be affordable since he is unemployed and his father is on Medicaid. If Mr. Jones decides to pursue costly health care treatment, the social worker should strive to see that he is not denied choices because of his limited financial resources.

    Some clients may feel that an advance directive might be used as a means of "cost containment" by health care providers. They may believe that if they sign an advance directive, that a medical team will not do anything for them. It would be important for a social worker to clarify these clients' questions and concerns. Other clients, such as Mr. Jones, may be concerned that it is better to choose death rather than to become a burden on one's family. The social worker may want to seek out resources and social supports to provide assistance to the family at this time of crisis.

  3. The social worker's role with clients is to encourage them to make their own choices after being informed of multiple choices and consequences. Social workers should not promote any specific point of view, but rather be open and available to the client for a discussion of issues. If the social worker, because of his/her beliefs, is not able to facilitate a discussion about end of life decisions with a terminally ill client, then the social worker has an ethical responsibility to refer the client to a social worker who can fulfill this need.

  4. The social worker should act as liaison to other health care professionals and help the client and the family, communicate their concerns to other providers. With the Jones family, the social worker may want to facilitate discussion between the doctor and family members about various palliative treatment. Also, other medical and social supports including hospice, home care, and visiting nurse services might be explored by the social wokrer.

  5. Although the social worker is legally forbidden to participate in assisted suicides in New York State, discussion with the client about end of life decisions including assisted suicide is appropriate. Mr. Jones may be most intersted in considering different options and the social worker should be available for this discussion.

  6. The social worker must recognize that self-awareness and openness about end of life decisions is crucial in working with a dying client and his family. Feelings of helpslessness are common. May people--including the client, families, and also many social workers--may feel uncomfortable in speaking about death and dying. The "secrets" surrounding illness and dying further isolate people from any supportive network which may be available. Mr. Jones's daughter is in a state of denial which may make her unavailable to her father. A role of the social worker may be to provide support to both the client and his family for a discussion of the difficult topic.

End of life decisions affect not only older people and their families, but people of all ages, especially during the current AIDS epidemic.

Return to Ethics | Return to Main Home Page