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Health Care Policy and Law
December 7, 2020

The Treatment of Patients With Unbearable Suffering—The Slippery Slope Is Real

Author Affiliations
  • 1Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York
JAMA Intern Med. 2021;181(2):160-161. doi:10.1001/jamainternmed.2020.6884

Physician-assisted death (PAD) is now legal in 9 US states and the District of Columbia and is under consideration in 17 more.1 Legalization generally follows ballot, as opposed to legislative, initiatives in the setting of extensive marketing efforts by advocacy groups focused on convincing the public that they face a future of unbearable suffering if PAD is not available. Whereas fear of unbearable suffering at the end of life is a commonly expressed concern, most Americans should be able to expect reliable and expert relief of suffering as a result of medical advances in geriatrics and palliative care. The fact that the public is so easily persuaded at the ballot box that suffering is inevitable and that they cannot trust the health care system to be responsive to their suffering should give us pause. The report by van den Berg et al2 in the current issue of JAMA Internal Medicine of 53 cases of PAD or euthanasia in the Netherlands with unbearable suffering attributable to multiple geriatric syndromes should cause alarm.

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    4 Comments for this article
    Arrogance of physicians
    Linda Bergthold, PhD | Health policy consultant
    We should have the right to decide when we want or need to die. The role of the physician should not be to dissuade us but to explain our options, provide support for us and our families, and allow us the dignity and ability to die when "we" feel our suffering is sufficient to support that. The paternalism of medicine makes it difficult for physicians to "let go" of their oath to do no harm or treat or cure. It is not their decision. It should always be ours.
    Learning the lessons of history
    Brian Reed, MD, MPH, MA, BS | Private practice
    In the mid-1930s, a European country considered to have one of the most intellectually enlightened cultures approved a law submitted by the political leadership in which it was stated that those patients suffering from "an incurable illness" could be granted a "merciful death" by euthanasia. It was hailed around the world as a most advanced and enlightened treatment of its population. That "political leadership" was Chancellor Hitler, the country was Germany, and within less than 10 years the definition of "incurable illness" was slowly expanded to include such "incurable conditions" as mental retardation, severe epilepsy, and various psychological conditions such as schizophrenia followed by "incurable >genetic< conditions" such as being a member of the Gypsy population and then finally, of course, the Jewish population. Armed with this law, many thousands of individuals were then >involuntarily< "euthanized", in which numerous asylums and other medical facilities were essentially emptied out. In fact, many thousands of gypsies were "mercifully euthanized" long before Jews gain the attention of the official national government. Initially, due to internally acknowledged concerns regarding possible international public opprobrium concerning their"expansion" of the definition of "incurable illness", the German government hid what they were doing using falsified death certificates declaring to their families that the various "mentally incurable" patients died of such things as "pneumonia". And all the while that this was going on, the rest of the world continue to offer its praise and approbation for Germany's "enlightened treatment of its incurably ill population". I would suggest that we would do well to pay attention to the lessons of history and what they tell us about human nature, that "twisted timber of humanity" - what is the old saying? The road to hell is paved with "good intentions".
    Not precisely the same
    Stephen Workman, MD MSc (Bioethics) | Dalhhousie University
    "Permissive access to PAD (physician assisted death) in this social context (under-recognized and under-treated suffering) comes close to societal validation, supported by policy, that some lives are no longer worth the investment required to preserve them—the implicit belief that both the individual and the society would be better off if the patient were dead. This is precisely the type of thinking that led first to the 1927 US Supreme Court’s 8 to 1 decision to uphold a state’s right to forcibly sterilize persons considered unfit to procreate..."

    While I agree that physicians must honor and validate both suffering
    and the value of a patient's life I disagree with the use of the word precisely. Sterilizing individuals without their full and informed consent is not equivalent to meeting a competent patient's persistent request for a medically assisted death.
    Suffering from Empty Promises...
    Daniel Diaz, Brittany's Husband | TheBrittanyFund.org
    Modern Medicine is not able to keep a person from suffering at end of life in 100% of the cases, period. And I summarily reject the empty promises that result in terminally ill individuals suffering needlessly because as the author suggests:

    "...most Americans should be able to expect reliable and expert relief of suffering as a result of medical advances in geriatrics and palliative care."

    So while most are able to expect relief of suffering, what do you offer my wife, Brittany Maynard, so she does not have to endure being tortured to death by that brain
    tumor? (She had a world class palliative care team with a combined 90+ years experience, but things were only getting worse everyday.) You offer Brittany nothing.

    Or maybe Terminal Sedation? Unfortunately I have plenty of examples where that empty promise of a peaceful death lasted for 5, 7, or 10+ days and was not at all gentle. (Side note: Terminal Sedation is the same as Medical Aid in Dying, but in slow motion. The end result is the same, death.)

    Brittany refused to accept the type of false narrative presented in this article. And along the way she made an enormous impact on how society views end of life care and end of life options.
    When Brittany died (11/1/2014) there were only 4 states that allowed a terminally ill individual to go through the rigorous process of applying for the option of medical aid in dying. Now there are 10. (As the author mentions, 9 states plus D.C.)

    I made a promise to Brittany, to help pass legislation so no one else would ever have to leave their home and move to another state like we did, just to ensure the option of a gentle dying process. In honor of my wife its a promise I intend to keep.

    I'II see you at the Statehouses.

    Daniel Diaz
    Brittany Maynard's Husband
    CONFLICT OF INTEREST: Advocate - End of Life Options. Work as a contractor alongside Compassion and Choices (one of the 'advocacy groups' the author alludes to =)