Concerns about decisions related to withholding/withdrawing life-sustaining treatment and futility for persons with disabilities.

Disability rights advocates have expressed significant concern about the potential dangers assisted suicide poses for persons with disabilities. This article extends this examination of concerns to withholding and withdrawing treatment in general and, in the specific case of physicians, using the futility rationale to discontinue or not start treatment. The arguments set forth against assisted suicide are applied to withholding and withdrawing treatment and futility and are shown to be at least as applicable to these other forms of hastening death. The article concludes with some policy suggestions.

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Over the last decade, attention has been given to end-of-life issues in the United States. The SUPPORT study (SUPPORT Principal Investigators, 1995; for a compilation of articles, see Freeborne, Lynn, & Desbiens, 2000) highlighted the poor way in which people die in the United States and was followed by an Institute of Medicine report (Field & Cassel, 1997) reviewing these issues in more depth. The emphasis of these examinations has been on physical and medical aspects of dying, especially pain management. Among the various decisions that people can make near the end of life, the focus has been on physician-assisted suicide (see Note). Much of this work has examined perceived dangers associated with assisted suicide--with some arguing the problems are real and others saying they are exaggerated.

Unfortunately, the energy given to both these areas of emphasis--medical aspects of dying and physician-assisted suicide--has limited the examination of other crucial aspects of the dying process and other end-of-life decisions that people make. Specifically, less discussion has been given to the psychological or social components of the dying process, even though research and experience have demonstrated that psychosocial issues are important determinants of quality of life and end-of-life decision making (Werth, Gordon, & Johnson, 2002). Also, little work has been done examining the potentially problematic psychosocial issues associated with decisions such as withholding and withdrawing treatment (Werth, 2000), even though a much higher percentage of people will die through these means than through assisted suicide (perhaps 70% or more [In re L.W., 1992] vs. 1/10 of 1% [Bascom & Tolle, 2002]), and issues that are potential problems with assisted suicide, such as clinical depression, are also problems for withholding or withdrawing treatment (see, e.g., Rosenblatt & Block, 2001).

The disability-rights community has been much more attentive to psychosocial issues associated with end-of-life decision making, although the emphasis within this literature has still been on assisted suicide. The purpose of this article is to extend the discussion of end-of-life issues for persons with disabilities beyond assisted suicide. To be explicit up front, based on my reading of the literature, I believe that withholding/withdrawing life-sustaining treatment (hereinafter "wh/wd tx"), especially when justified through the use of the "futility" argument, may be more dangerous than assisted suicide (i.e., more likely to happen against the person's wishes) for some persons with disabilities. Withholding or withdrawing treatment from persons who no longer have (or have never had) the capacity to make their own health-care decisions leads to others deciding the fate of incompetent individuals--these are the same people who, in the context of assisted suicide, are said to possibly be acting with ulterior motives. The heightened risk with wh/wd tx exists because, with assisted suicide, the person takes the final action herself or himself, whereas in wh/wd tx for someone incapable of making her or his own decisions, by definition the person does not have the final say in what happens, and thus it will be the values of others that will determine whether the person lives or dies (for a recent discussion of these concerns, see Brief of Amici Curiae Not Dead Yet et al., 2003).