Neurologic Diseases and Medical Aid in Dying: Aid-in-Dying Laws Create an Underclass of Patients Based on Disability

• Published in: American journal of bioethics Vol. 23; no. 9; pp. 5 - 15
• Main Authors: Shavelson, Lonny, Pope, Thaddeus M., Battin, Margaret Pabst, Ouellette, Alicia, Kluger, Benzi
• Format: Journal Article
• Language: English
• Published: United States Taylor & Francis 02.09.2023
• Subjects: ALS; amyotrophic lateral sclerosis; assisted suicide; Canada; death with dignity; euthanasia; Humans; MAID; Medical aid in dying; Suicide, Assisted; Washington; Canada; Washington; Medical aid in dying; assisted suicide; death with dignity; ALS; euthanasia; MAID; amyotrophic lateral sclerosis
• ISSN: 1526-5161; 1536-0075; 1536-0075
• DOI: 10.1080/15265161.2022.2105422

Terminally ill patients in 10 states plus Washington, D.C. have the right to take prescribed medications to end their lives (medical aid in dying). But otherwise-eligible patients with neuromuscular disabilities (ALS and other illnesses) are excluded if they are physically unable to "self-administer" the medications without assistance. This exclusion is incompatible with disability rights laws that mandate assistance to provide equal access to health care. This contradiction between aid-in-dying laws and disability rights laws can force patients and clinicians into violating one or the other, potentially creating an underclass of patients denied medical care that is available to those with other (less physically disabling) terminal illnesses. The immediacy of this issue is demonstrated by a lawsuit in Federal court filed in August 2021, requesting assistance in self-administration for terminally ill patients with neuromuscular diseases. This paper discusses the background of this conflict, the ethical issues at the heart of the dilemma, and recommends potential remedies.