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. 2023 Sep;23(9):5-15.
doi: 10.1080/15265161.2022.2105422. Epub 2022 Aug 16.

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

Lonny Shavelson  1 , Thaddeus M Pope  2 , Margaret Pabst Battin  3 , Alicia Ouellette  4 , Benzi Kluger  5
Affiliations

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

Lonny Shavelson et al. Am J Bioeth. 2023 Sep.

Abstract

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.

Keywords: ALS; MAID; Medical aid in dying; amyotrophic lateral sclerosis; assisted suicide; death with dignity; euthanasia.

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References

    1. California End of Life Option Act, Cal. Health & Safety Code §§ 443.1–.22;
    2. Colorado End of Life Options Act, Colo. Rev. Stat. §§ 25–48-101 to –123;
    3. District of Columbia Death with Dignity Act, D.C. Code §§ 7–661.01–.16;
    4. Hawaii Our Care, Our Choice Act, Haw. Rev. Stat. §§ 327L-1 to –25;
    5. Maine Death with Dignity Act, Me. Stat. tit. 22, § 2140;
    6. New Jersey Aid in Dying for the Terminally Ill Act, N.J. Stat §§ 26:16–1 to –20;
    7. New Mexico Elizabeth Whitefield End of Life Options Act, N.M. Stat. Ann §§ 24–7C-1 to –8, 24–1-43, 30–2-4.
    8. Oregon Death with Dignity Act, Or. Rev. Stat. §§ 127.800–.897;
    9. Vermont Patient Choice and Control at End of Life Act, Vt. Stat. Ann. tit 18, §§ 5281–93;
    10. Washington Death with Dignity Act, Wash. Rev. Code §§ 70.245.010-.220–.904.;
    11. Baxter vs. Montana, Baxter v. State, 224 P.3d 1211, 2009 MT 449, 354 Mont. 234, 2009 Mont. LEXIS 695 (Mont. Dec. 31, 2009) https://tinyurl.com/djnhrdmv
    1. United States Census Bureau. The population of these eleven states totals 73 million = 22% of the U.S. population, 330 million. https://www.census.gov/quickfacts/fact/map/US/PST045219
    1. California Department of Public Health, California End of Life Option Act 2019 Data Report (July 2020) (10.1%), https://www.cdph.ca.gov/Programs/CHSI/Pages/End-of-Life-Option-Act-.aspx;
    2. Colorado Department of Public Health & Environment, Colorado End-of-Life Options Act, Year Four 2020 Data Summary, with 2017–2020 Trends and Totals (Jan. 2021) (17.7%), http://cdphe.colorado.gov/center-for-health-and-environmental-data/regis...;
    3. Maine Department of Health & Human Services, Patient-Directed Care 2020 Annual Report (Mar. 2021) (6%), https://www.maine.gov/dhhs/sites/maine.gov.dhhs/files/inline-files/Patie...;
    4. New Jersey Department of Health, Medical Aid in Dying for the Terminally Ill Act 2020 Data Summary (2021) (15%), https://nj.gov/health/advancedirective/maid;
    5. Oregon Health Authority, Oregon Death with Dignity Act 2020 Data Summary (Feb. 2021) (8%), https://www.oregon.gov/oha/PH/ProviderPartnerResources/Evaluationresearc...;
    6. Vermont Department of Health, Report Concerning Patient Choice at the End of Life (Jan. 2020) (9%), https://legislature.vermont.gov/assets/Legislative-Reports/2020-Patient-...;
    7. Washington State Department of Health, 2018 Death with Dignity Act Report (July 2019) (10%), https://www.doh.wa.gov/Portals/1/Documents/Pubs/422-109-DeathWithDignity....
    8. There is insufficient data from Montana, New Mexico, and Washington, DC.
    1. Centers for Disease Control, Mortality in the U.S 2019: https://www.cdc.gov/nchs/products/databriefs/db395.htm
    2. Total deaths in U.S. ≈ 700/100,000 population.
    3. ALS Foundation for Life: https://www.alsfoundation.org/learn/facts.htm
    4. ALS deaths ≈ 2/100,000 population.
    1. Terminal neuromuscular diseases include but are not limited to: (1) ALS – amyotrophic lateral sclerosis, (2) MS – multiple sclerosis, (3) PSP – progressive supranuclear palsy, (4) MSA – multiple system atrophy, (5) Huntington’s disease, (6) Muscular dystrophies (varying types), (7) Cerebral palsy, (8) Paralysis from strokes and brain cancers, (9) Parkinson’s disease and related disorders, (10) Myasthenia Gravis, (11) SMA -- Spinal muscular atrophy (types 2, 3 and 4 can live to adulthood), (12) Mitochondrial and other myopathies, (13) Ataxias.

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