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Physician aid in dying (PAD) is currently legal in six states and the District of Columbia. But even in those jurisdictions, access to PAD remains a considerable—and often an insurmountable—issue for terminally ill people with disabilities.
In a new paper published in the international journal
Laws, Albany Law School
President and Dean Alicia Ouellette explores the barriers to PAD for people with disabilities, starting with legality, "an effective barrier to access to those seeking PAD in most states" that can be attributed, in part, to litigation and legislative advocacy by the major disability rights groups opposing PAD.
Studies of available data have "concluded that there is simply no evidence of coercion of people with disabilities or other vulnerable groups, despite predictions to the contrary," she wrote in the article entitled
"Barriers to Physician Aid in Dying for People with Disabilities." "To the extent that the experience from states where PAD is legal illuminates disability–based disparities, the concern is not overuse, but a lack of access for people with disabilities."
In states where PAD is legal, Dean Ouellette identified four barriers to access for people with disabilities:
Procedural protections intended to protect vulnerable populations from abuse, including: competency requirements that disqualify "wide swaths of people with intellectual disabilities," while people with "progressive diseases like Alzheimer's and ALS are denied access because they lose competence before they are within six months of death"; mandatory waiting periods during which rapidly deteriorating patients could lose competency; and laws requiring the patient to self-administer their lethal dose.
A lack of willing providers, particularly in "PAD blackout areas" where there is a single controlling health care system.
Increasing drug costs, "a concern for people with disabilities who, on average, earn less money than able-bodied counterparts."
• And special issues for veterans in California, where the state's Department of Veterans Affairs (CalVet) has "decided to evict terminally ill residents who seek aid-in-dying," citing concerns over federal funding.
In conclusion, Dean Ouellette called for additional study "to quantify the effects of barriers to PAD on persons with disabilities."
"Such study is warranted," she wrote. "Some number of terminally ill people with disabilities live in states where PAD is a legally and medically viable option. As a matter of equity and good policy, it is important to understand the extent to which people with disabilities are able to access legal, available methods of care, including all components of palliative, hospice, and end of life options. Early reports suggest that legalized aid in dying may in fact be an unobtainable option, even where proponents have achieved legality."
Read More: 'Barriers to Physician Aid in Dying for People with Disabilities,' 6
Laws 23 (2017)
Dean Ouellette's research focuses on health law, disability rights, family law, children's rights, and human reproduction. She has authored numerous articles in academic journals such as the
American Journal of Law and Medicine,
Hastings Center Report,
American Journal of Bioethics,
Hastings Law Journal,
Indiana Law Journal, and
Oregon Law Review.
Last year, she co-authored the papers
"U.S. Medical Schools' Compliance with the Americans with Disabilities Act: Findings From a National Study" in
Academic Medicine and
"Medical Schools' Willingness to Accommodate Medical Students with Sensory and Physical Disabilities: Ethical Foundations of a Functional Challenge to 'Organic' Technical Standards" in
AMA Journal of Ethics. She is the author of the book
Bioethics and Disability: Toward a Disability-Conscious Bioethics (Cambridge University Press, 2011).
Dean Ouellette earned an A.B. at Hamilton College and a J.D. from Albany Law School, where she was editor-in-chief of the
Albany Law Review.