About a week ago the New York Times published an opinion piece I can't get out of my mind. The title was provocative—“Should I let My Patients Die”. Written by Jessica Nutik Zitter, a physician, she discusses end of life issues and specifically the law in California that empowers physicians to end the life of their patients. So called death with dignity laws, have been passed in five states. The New York Times position on assisted suicide is very clear. For years the editorial board has been a staunch advocate of assisted suicide. Link: https://www.nytimes.com/2015/03/15/opinion/sunday/offering-a-choice-to-the-terminally-ill.html
In terms of assisted suicide, there is no pretense of objective journalism at the Times. The New York Times is far from alone because when it comes to end of life issues a major cultural shift has taken place in the last two decades. In the post Jack Kevorkian era, most major newspapers in the United States are in favor of assisted suicide. If polls are any indication, the majority of Americans support assisted suicide legislation. The problem, as I perceive it, is that the discussion of assisted suicide is reliant upon a simplistic notion that one should not die in pain and a person should be in control of how they die. This seems reasonable. Proponents of assisted suicide and legislatures rely upon the fact few people discuss end of life with their loved ones and physician in detail. Even fewer people read death with dignity legislation nor consider its larger implications. For well over twenty years those that advocate for assisted suicide or death with dignity as they phrase it are reliant on the implication of the phrase itself. Death with dignity implies that physician assisted suicide is the one and only way to insure a dignified death. This is patently false. The public has been sold a false bill of goods. There is the notion death with dignity legislation is all about pain—no person should die in agonizing pain. If one were faced with an agonizing death a person has the “right” or “control” of when to die. End of life is not this simple. People access assisted suicide because they fear a loss of autonomy and being a burden upon others.
The significant shift as I see it is cultural. There is a notion that people deserve a good death. What a good death is, I have no idea. But this phrase, a good death, is as misleading as death with dignity. A good death is now akin to a designer dress or enviable life style. Planned orchestrated deaths are the rage. What I find remarkable is even those that support assisted suicide legislation are concerned. For instance, Franklin G. Miller, a physician that supports assisted suicide legislation was disturbed by a long New York Times photo essay about a carefully scripted death. In “At His Own Wake, Celebrating Life and the Gift of Death" Catherine Porter and photos by Lesley Davis lavish praise upon the end of John Shields life. There is no question the Canadian Shields led an interesting life. But that is not the point. The piece reads like a New York Times style section essay about a celebrity wedding. Like Miller, I found this essay deeply disturbing. In the Hastings Center Bioethics Forum he wrote:
Physician-assisted death remains ethically controversial. The end of life is an arena for diverging values. Commitment to pluralism means recognizing a variety of good or legitimate ways to face death and dying. Presenting the planned death of John Shields as a model for dying in our era uncritically places a premium on the choice and control of the sovereign individual. Letting death happen, with the aid of palliative care, is no less good than making it happen. We should beware of prescribing a particular form of “death with dignity” as a model for the end of life and not acknowledging other perspectives. Link: http://www.thehastingscenter.org/physician-assisted-death-become-good-death/
I understand talking about death is hard. Believe me I get it—in recent years I have had to deal with the death of a parent, siblings, and a beloved pet. I have also had to face my own mortality when I had a heart attack in June. We do not need assisted suicide legislation. What we need is a nuanced discussion of end of life issues and options. Here Miller and I are in agreement despite the fact we are on opposite sides of the debate about assisted suicide. Death with dignity need not involve assisted suicide yet that is exactly what one is led to believe if reliant on mainstream news outlets such as the New York Times.
Here I return to the New York Times opinion that I cannot get out of my mind. At first glance “Should I let My Patients Die” appears to be a nuanced view by a physician that has struggled with the new death with dignity law in California. Jessica Nutik Zitter, author of Extreme Measures: Finding a Better Path to End of Life is a critical care and palliative medicine doctor. In her opinion Americans die badly and many people needlessly suffer at the end of life in intensive care units. This is not new ground. What makes her opinion different is how she hooks the reader in the first paragraph of her essay: she tells a story about a colleague who tapped her on the shoulder and said, “I have a patient who is asking about the End of Life Option Act”…”Can we even do that here”. For half the essay Zitter plays the part of objective commentator and insider. It is not until she wrote about her own family, specifically her mother, that her real feelings become evident, as does her ableist bigotry. After discussing the first patient who asked her about assisted suicide she admitted she wanted this option for her family. She wrote:
I have seen much suffering around death. In m experience, most of the pain can be managed by expert care teams focusing on symptom management and family support. But not all. My mother is profoundly claustrophobic. I can imagine her terror if she were to develop Lou Gehrig’ disease, which progressively immobilizes patients while their cognitive faculties remain largely intact. For my mother, this would be a fate worse than death.
Replace the condition ALS with any other neurological calamity as a means of justifying death with dignity. This indicates just how deeply ableism is entrenched into the fabric of society. Alzheimer’s is a fate worse than death. Quadriplegia is a fate worse than death. Multiple Sclerosis is a fate worse than death. Muscular Dystrophy is a fate worse than death. Parkinson’s disease is a fate worse than death. Yes, the medical model of disability is quite clear—many conditions people live with for decades if not their entire life is a fate worse than death. I know this from personal experience; some think my existence is indeed a fate worse then death for strangers and more than one physician have expressed this to me directly.
Zitter goes on to state she does not feel comfortable shortening the life of any patient and wonders if this makes her a hypocrite. In search of an answer she turned to the “defacto specialist in our area on this issue for counsel. Dr. Lonny Shavelson, an emergency medicine and primary care physician in Northern California, who has been grappling with the subject for many years.” I find this is a remarkably unusual choice. Shavelson operates an unorthodox medical practice, Bay Area End of Life Options, that has gotten quite a bit of attention in the last year. Shavelson specializes in consulting with patients and physicians who are deemed terminally ill and are interested in or have requested assisted suicide in the state of California. This sort of practice is well out of the norm even in states where assisted suicide is legal. To be clear: in California it is legal to request assisted suicide if one is diagnosed as terminally ill, is able to self administer a lethal prescription, and retains the mental capacity to make such a decision. For more on the law here is a link: https://leginfo.legislature.ca.gov/faces/billHistoryClient.xhtml?bill_id=201520162AB15
Shavelson is not your average physician. He is coauthor of “Physician-Hastened Death” guidelines published in the Western Journal of Medicine and has written amicus briefs for the Supreme Court (1996 Quill vs. Vacco case). Shavelson, like many, believes in the idea of a “good death” and is a staunch advocate of assisted suicide legislation. In A Chosen Death: The Dying Confront Assisted Suicide Shavelson wrote about “death anarchy” and came to believe assisted suicide had to be legalized and regulated. In Forbes he stated: what I found during the 1990s was a horror show--people hoarding medicine, afraid of how they were going to die; doctors secretly assisting people in dying; family members tortured by the memory of helping someone in their family die. It was the equivalent of back alley abortions. I was calling it dark bedroom suicide”. Link: https://www.forbes.com/sites/nextavenue/2016/06/09/the-good-death-doctor-ready-for-californias-new-law/#5628c1ac5b3e
For Shavelson, assisted suicide “is not about being a death doctor. This is about being a good death doctor”. This sort of double speak reminds me of Jack Kevorkian. Dr. Death as he was called is largely forgotten (college students do not even know who Kevorkian was). In his place, physicians across the nation are calling for or establishing protocols, procedures and outcome measurements in states that have passed assisted suicide legislation. Thus Zitter argues that medical procedures all require training and thinks the process of dying is no different. Zitter wants physicians specifically trained to end the lives of patients. I shake my head in wonder. All week I have come back to the flip answer to the question “Should I Help My Patients Die”. The answer is an obvious no. Hastening the death of others is ethically objectionable. How we mange end of life, that is the process of death, speaks volumes about who we are as human beings. I am worried about the future of humanity for I believe life is precious.