Thursday, December 21, 2006

Ouellette on Disability and the End of Life

New on Westlaw: Alicia Ouellette, Disability and the End of Life, 85 Or. L. Rev. 123 (2006). From the introduction:

The message from the disability rights community in the debate over end-of-life decisionmaking is simple and compelling: the disabled are better off alive than dead. Any effort to terminate life-sustaining treatment for a person who finds him- or herself disabled is not only demeaning to all people with disabilities, it also constitutes legal discrimination. Thus, courts and legislatures must prevent the termination of medical treatment, especially nutrition and hydration, in cases in which the patient has no written living will. The message has traction. By engaging in major lobbying efforts and court cases to press their cause, disability groups like Not Dead Yet and activists like lawyer Harriet McBryde Johnson have shaken foundational principles of law and bioethics that have for at least thirty years made it permissible for individuals to choose to forgo life-sustaining treatment.

To some degree, the success of the disability rights movement in spreading its message is attributable to an unspoken rule that the disability rights community is untouchable. People outside the community who have not experienced the life of a person with disabilities dare not disagree with the disabled. The reluctance is somewhat justified: the able-bodied have not experienced the condescension and discrimination regularly inflicted on the disabled. But to a very real degree, the lack of serious scholarly challenge to the position of the community is itself patronizing. Indeed, the "reflexive scorn"to the activists' message and the near silence in the legal literature in response to the avalanche of disability scholarship against the termination of end-of-life treatment is astounding. This silence further marginalizes the very group whose marginalization moved it to action in the first place, and leaves unanswered the very real charge of disability discrimination made by those suffering the discrimination. Equally troubling, the apparent deference to the community's message gives the activists legitimacy in their lobbying despite theoretical and practical flaws in their argument.

This Article seeks to answer the call from the disability rights community for a real debate on the role of disability in end-of-life decisionmaking. In the Article, I question whether the crusade by disability rights activists against freedom in medical decisionmaking is in fact in the best interest of people living with physical and mental challenges, and I conclude that it is not. I argue that in seeking to protect members of the disability community from perceived and real threats, the activists would limit options for all of us by declaring how we must, or, more correctly, how we must not die. In this way, Not Dead Yet, Harriet McBryde Johnson, and other disability rights activists pose a direct and immediate threat to the laws that give families choices in decisionmaking at the end of life. Their advocacy may well lead to perniciously paternalistic legal action that will disable all of us--people with and without disabilities--by eliminating medically appropriate and morally acceptable options for medical decisionmaking at the end of life.

I argue further that although the theory underlying the activist agenda has its roots in disability studies, it does not withstand scrutiny. The theory that laws allowing choice in dying perpetuate disability discrimination is flawed by conflation, inflation, misidentification, and a misplaced operational definition of disability. Specifically, the theory conflates dying with disability and misidentifies a persistent vegetative state as a disability that permits meaningful life. The conflation derives from a misplaced operational definition of disability that insists that all people fed by feeding tubes are the same. The conflation and misidentification allow the community to cast decisions to withhold or withdraw feeding tubes as disability prejudice, when such decisions are, in fact, an affirmation of autonomy and a showing of respect for individual values.

By disproving the underlying theory and exposing the negative practical implications of the disability agenda, I hope to derail the community's effort to turn back thirty years of progress in protecting patients and their families at the end of life. That said, my conclusion is not that the disability rights community has nothing of value to add to policy surrounding end-of-life decisionmaking. To the contrary, while I disagree with the extreme position of what I call the new activists, I argue that much of the community's message has merit. Judges, bioethicists, lawyers, legislatures, and health care providers should take concrete steps to stop the palpable discrimination that triggered the political movement in the first place and to alleviate the fear and hurt that has driven scholars and activists to extreme positions. I argue that two steps are necessary to achieve this goal. First, courts, bioethicists, and lawyers must stop justifying autonomous decisions to refuse treatment as reasonable by devaluing life with disability. Second, health care providers and policymakers, including institutional ethics boards, should reevaluate the notion of informed consent in cases of sudden disability to incorporate the evidence from empirical studies by disability scholars.

This looks very interesting, but I can't resist a comment on what the author calls the "patronizing" lack of debate on the issue. As someone who finds the underlying issues genuinely difficult, I don't know what she is talking about. Within the disability rights community, there is a serious debate about end-of-life issues, with strongly expressed opinions on both sides. When the Supreme Court has considered assisted suicide, disability rights advocates and organizations have even filed briefs on both sides. And it's ludicrous to say that most nondisabled people shrink from challenging those people with disabilities who oppose assisted suicide or withdrawal of treatment/life support. If you read a newspaper or turned on the television during the late stages of the Schiavo case, you should know that.

As for the lack of scholarly debate, I don't know. I've highlighted a number of recent scholarly pieces that challenge the opposition of many disability rights advocates to assisted suicide and letting die. In my own work, I've expressed sympathy for some aspects of the position of those disability rights advocates -- particularly their focus on the many constraints on choice in this context -- while at the same time arguing that their position is in significant respects internally contradictory. I've also criticized the federal courts' handling of the Schiavo case in the same article in which I criticized Congress's enactment of the law that sent the case to federal court in the first place.

I'm happy to see Ouellette's contribution to this debate. On the merits, I agree with her in some respects but think she too readily dismisses the difficult legal questions (to say "[s]o long as a surrogate is choosing between medically acceptable options, the ADA has no role in a medical decisionmaking case" is to speak much too broadly), and I think she is not sufficiently responsive to the real societal constraints on "free choice" in this context (and the reasons why paternalism is sometimes good). In the end, I suspect that we may agree more than we disagree. But the notion that there is not yet any vocal opposition to the position Ouellette opposes, and that it takes a brave soul to jump into the debate and take on these sacred cows, seems to me totally wrong.


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