• BIOETHICS FORUM ESSAY

Is Medical Aid in Dying a Human Right? Another View

In an essay for Bioethics Forum earlier this month, Alan B. Astrow concludes that medical aid in dying  is not a human right, though I will note that it is a state constitutional right in Montana and a legal right for the terminally ill in 10 other jurisdictions in the United States. Astrow is chief of hematology/medical oncology at New York-Presbyterian Brooklyn Methodist Hospital and professor of clinical medicine at Weill Cornell Medical College. He begins his essay by sharing this concern: “Once legalized, assisted death would become an accepted treatment option. A physician who cares for dying patients would then be obligated to discuss it with all such patients. Even if it were not directly raised, all patients with terminal illness speaking with their physicians about options would know that assisted dying is on the table. This might create subtle pressure on those already burdened with serious illness.”

On this point, Astrow is right: If MAID is adopted in a jurisdiction, it would create a standard of medical care that would require clinicians to explain it as one of the options available to a terminally ill patient. Mostly, such standards of care are set by practitioners themselves, but some are established by law. When advance directives became widely adopted by legislators in the various states, clinicians became obligated to inquire about the treatment preferences and directives of their patients. This standard of care was made explicit with the passage of the federal Patient Self-Determination Act (1990). The same is true of MAID laws. However, the question of subtle pressure is one of presentation, not of something inherent in the option. With most medical problems, there are options. If clinicians are not able to present all the options without bias, they are not doing their jobs properly. The same is true of lawyers, insurance agents, funeral directors, carpenters, and practitioners of most special skills. The need to present all the options objectively is not a reason to limit them to the personal preferences of the clinicians.

One often-raised issue is the proper role of a physician, and Astrow raises it anew. He is concerned that prescribing lethal drugs “alters traditional understandings of a physician’s role.” He is referring, apparently, to the Hippocratic Oath, which, as Janis Landis explains in the current FEN newsletter (the newsletter of the Final Exit Network), is no longer used to swear in new physicians to the profession. 

Astrow raises the concern that MAID might increase the number of suicides: “I also take seriously the warning that some have raised that there might be a connection between relaxed attitudes toward hastening death for the terminally ill and our nationwide epidemic of suicide and death from despair. This connection is impossible to prove, or disprove.” If there is no proof one way or the other, the issue adds nothing to the discussion. Nevertheless, it seems that Astrow fails to understand the clear differences between MAID and suicide recognized by the American Association of Suicidology, which found 15 distinctions between the two. When considered thoughtfully, suicide and physician aid in dying are conceptually, medically, and legally different. Unlike suicide, MAID exists in a milieu that is reflective, and concerns an anticipated death that a physician may legally help a dying patient facilitate.

Astrow also favors increasing the availability of palliative care and hospice services as an alternative to MAID. While virtually everyone supports the increased use of palliative care and the availability of hospice services, that would not eliminate the need for MAID. Palliative care is not always successful, and Astrow’s position ignores the personal autonomy people should have to decide that they don’t want to continue living to the end of a condition from which they will die after many months, weeks, or days of suffering, both physically and existentially–that is, when there is no longer purpose in their lives. He would deny the terminally ill this choice.

One of Astrow’s weakest arguments is that MAID is a euphemism that hides what is really happening. But he doesn’t say what it should be called.  In reality, MAID accurately describes what these right-to-die laws are about–receiving medical assistance to die on the patient’s terms.

Astrow does briefly discuss what a human right is. He consulted the Cambridge Dictionary of Philosophy, where he found that human rights “are possessed merely by virtue of one’s status as a human being” or “have been incorporated into legal systems by international agreements.” The United Nations states, “Human rights include the right to life and liberty, freedom from slavery and torture, freedom of opinion and expression, the right to work and education, and many more.”

While he acknowledges that MAID could fall into the category of “and many more,” he fails to deal adequately with the threshold question of what human rights are and how they came into existence.In its most straight-forward assertion, human rights are what we decide they are as a society, a culture, a people.The founders of this country declared that human beings (with some unstated exceptions) have unalienable rights, including the rights to equality, life, liberty, and property.

The United Nations Universal Declaration of Human Rights,  adopted in 1948, goes much further than did our founders, even after the Bill of Rights was added to our Constitution. The UDHR declares that all human beings have rights to dignity, life, liberty, security; to be treated in a spirit of brotherhood; not to be held in slavery or servitude; not to be subjected to torture or to cruel, inhuman or degrading treatment or punishment; to equality and fairness before the law; to privacy; to freedom of thought, conscience and religion; and to a host of other rights necessary for people to be free and functioning human beings in modern society. These are not rights bestowed by some king, god, government, or undefined Creator, but are rights determined by reason and conscience by representatives of the world community.

Our own Supreme Court, nearly 30 years ago, found that we all have the right to decide what medical care we are willing to accept. We should also have a right to decide what suffering we are willing to endure and receive medical assistance necessary to avoid the suffering we want to avoid. Our essential right to take our own lives when faced with unwanted suffering is undeniable–no state prohibits it. What we don’t yet have everywhere is the right to receive assistance in doing so, an omission that discriminates against the too feeble, the too ill, and the too disabled, who nevertheless know their own minds and deserve the assistance necessary to exercise that essential right.

Lamar W. Hankins is the moderator and editor of The Good Death Society Blog, a project of the Final Exit Network. A version of this essay originally appeared on The Good Death Society Blog.

 

Published on: December 19, 2019
Published in: End of Life, Hastings Bioethics Forum

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12 comments on “Is Medical Aid in Dying a Human Right? Another View

  1. Dena Davis on

    Thank you, Lamar Hankins! I would add two more thoughts.

    1- I also have qualms about the term, Medical Aid in Dying. The problem is, we all need medical aid in dying, whether or not we want to shorten our lives. That is the basic message of the hospice movement, no? Just because they cannot “cure,” the medical profession should not turn its back on dying patients, but should support them to the end. So I still favor “Medically Assisted Suicide.” I believe that suicide is an honorable term and we don’t need to be coy about it.

    2- Of course, you are absolutely right about looking objectively at the issue of physicians “subtly pressuring” patients. How about oncologists not-so-subtly pressuring patients to undergo one more useless round of chemo? Or this ridiculous notion that we should all engage in a “heroic battle” with cancer? Pressure comes in all varieties.

    Reply
    • Diane Barry on

      I totally, strongly, and undeniably agree with both #’s 1 & 2.
      I personally can relate to #2. And yes, it is a ridiculous notion for sure.

      Reply
  2. Arthur Frank on

    I also am grateful for Lamar Hankins’s useful reply to Alan Astrow. In response to Deena Davis’s suggestion, for us in Canada, MAiD (with a lower case i) is already ensconced in legislation and professional usage. No term will ever be perfect.

    In response to Lamar Hankins, as much as my recent involvements have led me to favour MAiD (and I’m part of a working group that’s about to publish on the issue of changing Canadian legislation to expand qualification), I do question whether the language of rights is useful to apply here. Rights like life and liberty are so generalized that they can express societal aspirations without implying mechanisms for delivering something to someone who can seek legal remedy if that is not provided. Affirmation of people’s right to life and liberty does not include guarantees of housing or food security. Rights to any health care are notably circumscribed in actual availability.

    My preferred usage is to advocate a human right to the relief of suffering, rather than a right to die. The burden of proof would then fall upon the state to show why a willing medical provider should not be able to offer assistance in dying when that is required for the relief of suffering (as, for example, palliative care offers terminal sedation, when other options are no longer effective). That means the state specifying conditions for offering MAiD, as the Canadian government is currently struggling to do.

    I’ve come to believe that in this particular area, the courts are probably the best venue for working out the balance between inclusion in MAiD availability and protection from interventions. Counts are better set up than legislative bodies to give sustained consideration to detailed personal testimony about particular people’s suffering; they decide on particular cases. That balance between availability and protection will always be a work in progress, with case law as the means of progressing. Matters will never be tidy, in principle or practice. Canada has been well served, in my view, by a series of court decisions on MAiD, and parliamentary action–amending the criminal code– has been in response to courts.

    I also appreciate Hankins’s point that physicians, like other professionals, have a responsibility to inform their patients of all legally available options, whether or not they themselves are willing to offer those options. If physicians and hospitals cannot suspend their own values long enough to do that work of informing their patients, then I’d argue that their patients should be notified up front that the information they receive is circumscribed, and alternative service provision offered to those patients. Where MAiD is legal, no health professional should be required to offer MAiD, but any health professional must be prepared to discuss it. Could we imagine a lawyer who refused to discuss plea bargains with her clients, because she didn’t believe they satisfied her conception of justice? Claims to medical exceptionalism are becoming more troublesome in their frequency.

    Reply
    • Alan B. Astrow on

      I have enormous respect for my friend Arthur Frank. I note that he agrees that, at the very least, referring to MAID as a “human right” is not especially useful. Recall that this discussion began when the head of the New York State Assembly Health Committee, Richard Gottfried, struggling to respond to a number of practical concerns regarding the MAID legislation that he was co-sponsoring, finally asserted “It’s a human right.” Frank disposes of Gottfried’s way out and returns us to the practical concerns, but now he wants to remove the whole discussion from the realm of democratic deliberation and leave it to the courts. It is a tough issue, and one sympathizes with his wish that some ultimate wise person or persons could figure this one out. But judges are people, just like the rest of us, and they will be left struggling with the same practical issues that left Gottfried flumoxed. In a democracy, I believe, the responsibility for these sorts of serious moral questions, falls to all of us.

      I also note that Frank has changed the terms a bit here. The proposed New York State legislation does not refer to a right to relief of sufffering. Instead, it talks about provision of a lethal prescription to a person who is terminally ill. One can imagine other ways to address the right to relief of suffering short of eliminating the sufferer, and suffering itself is a notoriously elusive concept, with a large subjective component. For that very reason, it has proven difficult to set boundaries around this practice in Belgium and the Netherlands and people with severe psychiatric illness have been euthanized.

      Reply
    • Lidia Schapira on

      The comments posted by thoughtful professors and attorneys fail to recognize the enormous burden that would be placed on physicians if forced to lay the option of medical assistance in dying by prescription on the table when talking with every patient who is seriously ill. Being present and assuming the profound responsibility of caring for a fellow human being who is suffering is not without consequences, and should not be trivialized or described only in a transactional language. These are not abstractions for doctors, whose lived experiences matter too. The passage of such laws will require a concerted response from hospitals and physician groups in order to triage these discussions, provide support and specialized communication skills training for physicians who opt in.

      Reply
  3. Alan B. Astrow on

    I thank Lamar Hankins for his thoughtful response to my essay. I note that he and I agree on a central issue. He writes, “If MAID is adopted in a jurisdiction, it would create a standard of medical care that would require clinicians to explain it as one of the options available to a terminally ill patient. ” The difference is that Hankins thinks this would be a good thing. To my thinking, when a doctor offers a gravely ill patient the option of simply ending it, the offer inevitably raises the thought for the patient, who may already feel like a burden to others, that well, maybe I should or further, maybe the doctor thinks I should. Hankins is confident that clinicians will be able to handle this sort of conversation in an unbiased way, but as Dena Davis correctly notes, physicians are all too human and bearers of many unacknowledged biases and wishes, including the wish that a suffering patient not responding to treatment should just go away. Especially given the increasingly rushed character of medical interactions (and beyond, so many human interactions) these days, can one honestly feel confident that this new “right” would not lead to the possibility of subtle abuse of the seriously ill?

    I also agree with Dena Davis: hospice and palliative care are accepted forms of medical aid in dying. “MAID” is something else, medical assistance in causing death. For that reason, MAID is not an accurate descriptor.

    Reply
  4. Jonathan B. Imber on

    I am a sociologist, and I applaud my good friends Alan Astrow and Arthur Frank for their efforts to address a public issue far more advanced in Europe than in the United States at the moment. I offer here several questions that might help make sense of what some of the stakes are in furthering (particularly in the United States) the legalization of euthanasia, however its surrogate terms (e.g., PAS, MAiD) may be defined.

    The first question I have is why physicians are deemed to be the only qualified professionals to provide such assistance? Why not physician assistants? Why not nurse practitioners or nurses? Why not pharmacists? Why not clinical psychologists? Is the only barrier that prevents these others from assisting in proactively ending a life the authority to prescribe the necessary medicines? Why not provide such medicines “over-the counter”? Is keeping the responsibility exclusively to licensed doctors a strategy that is supposed to contain recourse to it? I doubt that, and the European evidence is already confirming that doubt.

    The second question I have is what groups of people are more and less likely to avail themselves of this assistance in terms of gender, race, and class? I ask this because here in Massachusetts, a referendum failed to pass in 2012 legalizing euthanasia, with a variety of polls suggesting that those most in favor were also most likely to fear having to be dependent on others during the final stages of their lives. Those most in favor had some college education or graduate degrees. Back in 2016, JAMA published a major overview of what then was still being called euthanasia and physician-assisted suicide, finding that more than 70% of cases involved patients with cancer and that typical patients are older, white, and well-educated. Autonomy is the opiate of the more highly educated and higher classes. I would wager that those with only high school education as well as the Catholic middle class of Massachusetts recognized the danger far more than the Editorial Board of the New England Journal of Medicine. The argument made at the time about why the Massachusetts “Death with Dignity” ballot initiative failed (51% to 49%) was that a media campaign and money from Catholic sources tipped the balance, given that polls indicated a substantial majority of state residents supported the initiative. This type of explanation is the stock-in-trade of disappointed supporters.

    The third question I have is what it means fundamentally to “legalize” anything? We forget, I think, that in a democratic system there are several ways that social norms evolve. The Canadian and US cases with respect to euthanasia are divergent examples. In the US, unlike its role in the matter of abortion, the United States Supreme Court refused to strike down state laws prohibiting euthanasia, leaving the matter up to individual states. In the case of abortion, the Court ushered in what is now a forty-year political crisis that was much better left to the states in 1973, as state after state reformed its abortion statutes between 1967 and 1973. This is by now ancient history. The Canadian case is interesting to me as far as I have followed it because the courts there have legalized euthanasia, thus creating a very different dilemma on the ground for health professionals (doctors and nurses) who wish not to participate. Conscientious objection in American history pertained largely to military service. (And isn’t it ironic the same Canada that took in American conscientious objectors during the Vietnam war are far less supportive of those health professionals in Canada who oppose participating in euthanasia?) But now it has settled into definitions of professionalism and professional responsibility. In the US, there has long been rankling over doctors who refuse to participate in abortion, but because abortion is available mostly in special clinics, the personnel are already self-selected to participate. It may be the case that because Canada already has universal health care that the expectations on the providers of those services preempts more readily any claims to conscientious objection. The growing pressure to participate on those in the health professions opposed to participating in either abortion or euthanasia sets a very dangerous precedent for the future of religious freedom.

    I am grateful to all concerned for the opportunity to think out loud on these matters. I would suggest finally that the organized citizen movements to legalize euthanasia should be a subject of much greater sociological study. There is much more to them, social psychologically, than meets the eye.

    Reply
  5. Jonathan B. Imber on

    I am a sociologist, and I applaud my good friends Alan Astrow and Arthur Frank for their efforts to address a public issue far more advanced in Europe than in the United States at the moment. I offer here several questions that might help make sense of what some of the stakes are in furthering (particularly in the United States) the legalization of euthanasia, however its surrogate terms (e.g., PAS, MAiD) may be defined.

    The first question I have is why physicians are deemed to be the only qualified professionals to provide such assistance? Why not physician assistants? Why not nurse practitioners or nurses? Why not pharmacists? Why not clinical psychologists? Is the only barrier that prevents these others from assisting in proactively ending a life the authority to prescribe the necessary medicines? Why not provide such medicines “over-the counter”? Is keeping the responsibility exclusively to licensed doctors a strategy that is supposed to contain recourse to it? I doubt that, and the European evidence is already confirming that doubt.

    The second question I have is what groups of people are more and less likely to avail themselves of this assistance in terms of gender, race, and class? I ask this because here in Massachusetts, a referendum failed to pass in 2012 legalizing euthanasia, with a variety of polls suggesting that those most in favor were also most likely to fear having to be dependent on others during the final stages of their lives. Those most in favor had some college education or graduate degrees. Back in 2016, JAMA published a major overview of what then was still being called euthanasia and physician-assisted suicide, finding that more than 70% of cases involved patients with cancer and that typical patients are older, white, and well-educated. Autonomy is the opiate of the more highly educated and higher classes. I would wager that those with only high school education as well as the Catholic middle class of Massachusetts recognized the danger far more than the Editorial Board of the New England Journal of Medicine. The argument made at the time about why the Massachusetts “Death with Dignity” ballot initiative failed (51% to 49%) was that a media campaign and money from Catholic sources tipped the balance, given that polls indicated a substantial majority of state residents supported the initiative. This type of explanation is the stock-in-trade of disappointed supporters.

    The third question I have is what it means fundamentally to “legalize” anything? We forget, I think, that in a democratic system there are several ways that social norms evolve. The Canadian and US cases with respect to euthanasia are divergent examples. In the US, unlike its role in the matter of abortion, the United States Supreme Court refused to strike down state laws prohibiting euthanasia, leaving the matter up to individual states. In the case of abortion, the Court ushered in what is now a forty-year political crisis that was much better left to the states in 1973, as state after state reformed its abortion statutes between 1967 and 1973. This is by now ancient history. The Canadian case is interesting to me as far as I have followed it because the courts there have legalized euthanasia, thus creating a very different dilemma on the ground for health professionals (doctors and nurses) who wish not to participate. Conscientious objection in American history pertained largely to military service. (And isn’t it ironic the same Canada that took in American conscientious objectors during the Vietnam war are far less supportive of those health professionals in Canada who oppose participating in euthanasia?) But now it has settled into definitions of professionalism and professional responsibility. In the US, there has long been rankling over doctors who refuse to participate in abortion, but because abortion is available mostly in special clinics, the personnel are already self-selected to participate. It may be the case that because Canada already has universal health care that the expectations on the providers of those services pre-empts more readily any claims to conscientious objection. The growing pressure to participate on those in the health professions opposed to participating in either abortion or euthanasia sets a very dangerous precedent for the future of religious freedom.

    I am grateful to all concerned for the opportunity to think out loud on these matters. I would suggest finally that the organized citizen movements to legalize euthanasia should be a subject of much greater sociological study. There is much more to them, social psychologically, than meets the eye.

    Reply

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