Disability and the End of Life
60 Pages Posted: 17 Jan 2008
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. The article questions 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 concludes that it is not. Its underlying argument - 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 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. Despite the flawed theory and negative practical implications of the disability agenda, the disabilty scholar's arguments deserve consideration. 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. The paper concludes that 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.
Keywords: Disability, bioethics, end of life, Schiavo
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