A long time ago in a galaxy far, far away (Toledo, Ohio), I was teaching an undergraduate course on death and dying. One of the teaching materials that my students found to be particularly provocative was a video, “Whose Life is it Anyway?,” based on a brilliant and prescient screenplay by Brian Clark. The plot revolves around Ken Harrison, a sculptor (played by Richard Dreyfus), who is paralyzed from the neck down as the result of a car accident. After fully coming to terms with his condition, Ken expresses his desire to have his ventilator removed so that he can be allowed to die.
Although his attending physician (Christine Lahti) becomes ambivalent about seeing someone with such intelligence and a quick wit, wanting to end his life, Ken’s main protagonist is the hospital administrator (Richard Cassavetes) who insists “Not in my hospital.” Clark presents arguments both in favor of and opposing “euthanasia” and to what extent government should be allowed to interfere with the life or death decisions of a private citizen.
Ken retains a lawyer and after a “competence” hearing is conducted at his bedside, the judge rules that Ken is capable of making his own decisions and that the hospital must either comply with his wishes or find another hospital that will accept him and not attempt to thwart his decision. Ken is relieved that he has finally won his case and the film ends leaving the viewer to wonder what he will do next.
Although the play was televised in March of 1972 and opened on the London stage in 1978, the video was released in 1981.
Since the 1970s there have been debates about whether “patients” have the right to refuse various forms of life-saving or life-sustaining medical treatment, ranging from blood transfusions to ventilators and feeding tubes. More recently the debate has moved into the area of dementia and which, if any, kinds of treatment may be refused under the terms of a directive written in advance of loss of decision-making capacity. The issue of forced feeding is addressed by several articles in the July/August issue (48:4) of the Hastings Center Report, one of the nation’s preeminent bioethics publications.
The salience of this question can be seen by a Google search of the phrase “Force Feeding Alzheimer’s Patients” that produced 876,000 “hits.”
Two of the articles are presented in the form of a debate.
Norman L. Cantor, a highly respected lawyer and bioethicist, has written a provocative article in which he explains his own interest in refusing all forms of medical treatment, except for necessary palliative care, rather than being kept alive after he has lost decision-making capacity. [Abstract here; full article here]
Daniel P. Sulmasy, a physician and bioethicist with equally impressive credentials, has written a rebuttal of sorts.
When invited to write a commentary on this debate, I began by looking into each of their backgrounds.
While I can find no mention of Cantor’s religion, his bio on the Rutgers University website states that he joined the law school faculty in 1970 and taught courses in Constitutional Law, Labor Law, Contracts and Bioethics. He became a Professor Emeritus in July 2005. He has served as a visiting professor on the law faculties at Columbia University, Hebrew University of Jerusalem, and Tel Aviv University, and as a Merck Visiting Scholar at Seton Hall Law School. Since his retirement, Professor Cantor lives a half year in Tel Aviv and a half year in New Jersey. From this I will assume that he is a Jew.
Sulmasy, who holds both an M.D. and Ph.D., has recently joined the faculty at Georgetown University, where he serves as Senior Research Scholar at the Kennedy Institute of Ethics and on the faculty of the Pellegrino Center for Clinical Bioethics. Prior to this he served on the medical faulty at the University of Chicago. An article in UChicago magazine states that for almost 27 years he also lived as a Franciscan friar.
Sulmasy left the Franciscans last January after falling in love and deciding to marry—something he could not do and still remain a friar. But his faith and religious training still deeply inform his thinking.
I believe that it is important to understand this when reading their very differing views on appropriate care at the end of life. Sulmasy begins his “Open Letter” to Cantor by saying
Although I don’t know you well, I thought I’d write to you as though you were my patient. You are not my patient, so pardon me if this seems presumptuous.
He goes on to say
I know how you feel. Many of us have been there, witnessing someone who was once a professor lying in bed, staring vacantly, no longer able to converse, no longer in control of bowel and bladder function. Reasonable people are bound to think, “I never want to end up this way. I’ll kill myself first.”
But we should not endorse letting you, or anyone else, act on such inclinations. We should never ratify the idea that the world is better off without you even if you come to believe it. We should mourn your loss, not precipitate it. The reason we shouldn’t endorse your killing yourself is the same reason you gave in your essay about why we should not let you soil yourself—out of respect for your basic human dignity. You are valuable not only for your intellect, but as a fellow human being. Should you develop a dementing illness, we should keep you warm, comfortable, and clean, treat your pain, and care for you.
This was his response to Cantor’s wish to avoid the indignity of dementia. But Cantor had more to say:
My personal vision of intolerable indignity includes such a substantial cognitive decline soiling the life image of a vibrant, articulate figure that I have cultivated to shape my survivors’ recollections. I understand that at this juncture I might not be physically or emotionally suffering and I might still be deriving some rudimentary satisfactions (such as music or t.v.) from life. And I understand that, while this defined level of cognitive decline is repulsive and degrading to my current, competent self, my future demented persona may not recall or care about my convictions concerning the indignity of mental debilitation. Can I expect that my advance instructions—to be allowed to die from treatable comorbidities like infections or eating disorders—will be implemented at this stage?
And Sulmasy’s response to this?
We agree, Norm, that Alzheimer disease is bad. It’s really bad. But the ramifications of your proposed solution are wide. And the compassionate care we are capable of providing you, if we are wise and respectful, is probably better than you think. So, before you sign your advance directive, let’s talk it over. What we really need is your intellect and energy focused on the struggle to improve care at the end of life—providing better access to hospice and palliative care, better education about foregoing life-sustaining treatments, better financial and social support for the frail elderly and their caregivers.
Please give me a call. When your time comes, we can promise to care for you without forcing you to linger. But we never want to endorse the idea that the world would be a better place without you.
I have no idea what Cantor’s reaction to Sulmasy’s advice might have been, or if he has even read it, but mine was anger. Anger at the kind of paternalism and condescension that was so typical of so many physicians throughout the twentieth century is still alive and well in Catholic institutions like Georgetown.
What do I expect of my physician? I expect that s/he will offer diagnostic and clinical skill and be a good listener, but most of all I expect that s/he will respect my intelligence and my wishes. And, if my wish to refuse any and all forms of life-sustaining treatment rather than endure life with dementia is not something that s/he is willing to respect, then I expect to be informed of that early enough in our relationship so that I can find a physician that will.
After all, whose life is it anyway?
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References:
Norman L. Cantor, “On Avoiding Deep Dementia,” Hastings Center Report 48, no 4 (2018): 15-24.
Daniel P. Sulmasy, “An Open Letter to Norman Cantor Regarding Dementia and Physician-Assisted Suicide,” Hastings Center Report 48, no 4 (2018); 28-30.
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Gere B. Fulton, Ph.D., J.D., is the author of several books, including co-author with Eileen K. Metress, Ph.D., of “Perspectives on Death and Dying.” [Table of Contents here.] Dr. Fulton retired from The University of Toledo as Professor Emeritus of Public Health and The University of South Carolina (USC) School of Medicine as Palmetto Professor of Clinical Internal Medicine, where he taught “Law and Ethics of End of Life Care.” He also was a member of the Core Faculty at the Center for Bioethics and Medical Humanities at USC.
Sulmasy’s choice of words “we should not let you..” and “we should not endorse letting you” reveals his belief that he has some sort of right to override Cantor’s right to chose to end his life on his own terms. Sulmasy would be more credible and honest if he were explicit about his claim to have such a right. What is the basis of his assertion? Would Cantor agree?
I find it presumptuous of the ex-priest to offer to care for Norman Cantor, since Sulmasy is not a physician and his recommendations clearly satisfy his wishes, not those of the patient. Medical ethics is, or should be, based on following the crucial rule for all of us in the healing arts. That is, the physician is obligated to do “what is in the best interests of the patient.” Further, if a patient has firmly stated, or written in an advance directive, that s/he wishes to hasten her/his own life, it is the duty of a doctor to identify if the patient is mentally competent at the time he expresses her/his wish. If so, he must NOT abandon the patient near the end of his life. He must provide appropriate care to provide comfort as that person is dying, which in some instances may include medication that hastens dying, but is permitted as controlling symptoms. In rare instances, he may assist the patient to achieve a dignified, peaceful dying process. If he opposes the competent patient’s wishes, he is required to refer her/him to another physician.
Gary Wederspahn is so right about Sulmasy’s use of the word “should.” Sulmasy uses the word “should” not as a reason, but as a substitute for a reason. His reason is a tautology: We should because we should. For the most part, he offers no reason why one “should” believe as he does. Why not? Because he’s trying not to reveal his reason. His reason is that God tells him what we “should” do. We see this again and again in the pseudo-academic writings of the opponents of any and every form of choice in dying. By now, they know they are not going to persuade people to their point of view if they come out and say, “We should oppose choices in dying because it’s God’s will; only God may decide when one dies.” So they sit up nights trying to think up ways to express their view without openly admitting that it’s preordained by God. But their view is, in fact, preordained by God. They seek to enforce their religion as the law. Kind of like the Taliban.
I wish people would point out the absurdity of saying that a physician should not assist a patient to end his life because when one dies must be left to God. By this argument, a physician should withhold intervention if a patient would die without it, even if the patient could recover fully with treatment..
Sulmasy is 100% correct. No one is an island. Cantor is part of the human community. His opinion that his life would be no longer worth living should he develop dementia diminishes all our lives. What is he saying to everyone else who lives a life of dignity with severe dementia? Or even those who are born with severe developmental disabilities or physical disabilities? That they should have just been aborted or been allowed to die as infants? That a worthwhile life is measured in IQ poiints or the ability to perform activities of daily living without assistance. What arrogance, ableism, and discrimination! There is no reason that Cantor cannot have an advanced directive that allows him (or his health care power of attorney) to refuse aggressive (or even routine) medical treatment as his condition declines. That is far different than asking a member of the medical community to assist him in killing him. And if Cantor wants to kill himself should he reach that stage of disagility, it’s not illegal; it hasn’t been for a long time. He might also find that he can adapt to his “new normal” just fine if he gives himself a chance. My own husband, a brilliant college professor, has done so without difficulty.
I’m new to this community but I think that religion in any form (in the US usually Christian) should not be involved in lawmaking. In fact, separation of church and state is Constitution, though many forget that fact. Similarly, religion should not impact abortion laws. We must move beyond these restrictions and implement laws based on rational thinking.
C Barton,
Everyone has a moral compass of some sort or another. Yours may not be religion; that’s fine. But you (or anyone else) have no right to deny others who use their religious faith as their moral compass to inform legal decision-making. Having no religious test for holding public office means what it says. We cannot (and should not) require lawmakers to be religious; neither can we require them to leave their religious and moral values outside of statehouse, Congressional, and Senate chambers. Freedom of religion does not mean freedom from religion. By the way, check out http://www.secularprolife.org. People with no religious faith whatsoever make cogent pro-life arguments there. And Kevin Yuill and Liz Carr (a disabled atheist from the UK) strongly oppose assisted suicide and euthanasia, as does the nonsectarian disability rights group, Not Dead Yet. You cannot dismiss these people for their lack of “rational” thinking, although I can assure you that religious arguments can be far from irrational. Ever heard of St. Thomas Aquinas or St. Augustine? (Not Roman Catholic, but recognize their titles as canonized saints.)
I’ve got a problem with the “six months” rule. For people with cancer this may be an easy marker to identify, but for others who are being held hostage by diseases that are terminal but take subtler — and longer lasting — routes to death, the wish to opt out from a lengthier horizon should be respected and the means available. I believe that each individual should have the absolute right to determine what constitutes his/her quality of life and to choose to die if that quality is diminished past whatever point that individual deems is pivotal.
The issue with a lengthier horizon (if written in an advanced directive) is that the individual may well change his or her mind when the time comes and may not be able to express his or her wish to not to die in a cogent manner. Since we cannot know, we must err on the side of life. There is no do-over on this one.
I agree with much that others have said, and I find Shulmasy’s comment to be wishful thinking more than reality: “And the compassionate care we are capable of providing you, if we are wise and respectful, is probably better than you think. ”
Care homes of all kinds deny entrance to people for many reasons, and when the are allowed in, the cost would bankrupt most families quickly and leave a grieving spouse without means. Leaving your loved ones bankrupt carries no dignity to the one in Depends being drugged to keep him or her from attacking fellow inmates or otherwise make trouble for the staff members who, while probably trying to give the best care possible, often cannot keep up with the patient load.
It’s my body. Don’t tell me what to do with it when I can no longer care for myself.
My comments are relevant to the US; they may not apply to other nations.
1) Haven’t you heard of elderlaw and estate planning attorneys? They can ensure that surviving spouses will not be left bankrupt. Everyone should be working with one by their late 40s. My husband and I have a very good one.
2) Long-term care insurance is also available to *assist* with meeting expenses for assisted living and nursing home expenses. Get it in by one’s mid 50s while in still reasonably good health and the premiums will still be affordable. I waited until the relatively ripe old age of 64. Fortunately, I have a policy that will pay up to $100,000 of assisted living or nursing home care expenses for an affordable rate.
3) You are correct that some long-term care facilities are nefarious, if not downright evil, for kicking out residents, for flimsy grounds. But not all of them. Choose wisely. And make sure your loved one does not rely solely on their in-house medical staff. I take my husband to his family doctor every six months and would not hesitate to take him to a specialist anywhere in our state for a consultation for top-notch care if necessary. He has Medicare, not Medicaid, for his medical insurance. I also pay for his private dental and vision insurance and will do so indefinitely.
4) In our state, a surviving spouse can retain about $120K in assets, his/her spouse’s term life insurance proceeds upon their death, their home (with some caveats), all unearned income (pensions and Social Security), and 401k/403b/IRA money (provided it has been converted into Medicaid-certified annuities). This is hardly bankruptcy. The caveats on the home are: 1) the spouse can sell the home and buy another one, even out of state. 2) After the surviving spouse dies, Medicaid takes the home and sells it to recoup the cost of the care it provided.
5) My husband is in a long-term care center specializing in care of people with Alzheimer’s and other forms of dementia. Its medical director is a nationally-recogized (if not world-recognized) neurologist who is a clinician and researcher specalizing in Alzheimer’s/dementia. He works very hard to tailor medication plans that do not drug residents into zombies. The staff is very caring and competent. Many of them are originally from African nations, where care for the sick and elderly is baked into their DNA, so to speak. And the facility’s beds are all-Medicaid certified. No resident will be asked to leave when their cash runs out. And in the 3 years and 3 months in which my husband has resided there, only *one* resident has been asked to leave because of behavioral issues. And with personal knowlege of his situation, that may even be due to his meddling wife.
6) The notion that a worthwhile life consists of holding onto one’s IQ points and the ability to perform all activities of daily living independently is incredibly elitist, ableist, and discriminatory. What does that say about a mildly mentally retarded person working in a hospital cafeteria or working as a custodian, both working in jobs that contribute to society? Or people with paraplegia or quadriplegia? Or infants wth congenital birth defects, with parents and siblings who love them deeply? Are they just trash?
Sue McKeown has raised the issue of “ableism” once again. As I wrote in a three-part series in October 2018, ableism is defined by the Center for Disability Rights as “a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other.”
From my vantage point, accusations of ableism often discount the autonomy of mentally competent individuals, whether or not they are disabled. When they are disabled, an accusation of ableism is itself a form of ableism in that it would deny the disabled autonomy over their own lives. Support for MAID is not grounded in disability. Rather, support for such laws is grounded in the desire to avoid unwanted suffering from debilitating diseases. The disabled deserve to have the same options that non-disabled people have.
To be clear, I am not suggesting a hastened death for anyone. But I am suggesting that there should be such an option for those who want it for themselves.
Disability advocates favor self-determination and autonomy as long as we accept their values about a right to die. I recognize the discrimination that the disabled have faced and still face, but that should not limit my choices, or their choices. We should all have the full blessings of liberty and see the distinction between what Katharina Heyer has termed “the decaying and dying body, and the disabled and living body.”
Whether we are disabled or not disabled, if we exist in a “decaying and dying body,” we should have the autonomy to seek the best good death that we can.
OK, so I didn’t use the textbook definition of ableist. My point was that it is wrong to say that any person’s life is no longer worth living. That smacks of what Adolf Hitler believed: that the weak, sick, and “useless eaters” needed to be purged from society. I do not mean that you are a neo-Nazi or stand for what Hitler believed. But the very thought that any one life is no longer worth living cheapens human life in general and there is no telling where it will lead. It is immoral to even consider that notion. Good palliative care can prevent almost all pain, and terminal sedation is a last resort where that is not possible. If someone is not willing to stand with a loved one when he or she is sick and frail, what kind of person are they anyway? If anyone is so riddled with foolish pride that they cannot be vulnerable in their dying days, what kind of a person are they? It’s part of what it means to be human, for heaven’s sake. I don’t always like it either. I have had to ask for help recently while I was ill since I live alone. But that’s what friends are for.
I don’t think it is “foolish pride” to want and seek a good death.