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Joshua Pagano, DO
Ronald W. Pies, MD
Joshua Pagano, DO
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Has this slogan crowded out the importance of life with dignity?
The home hospice nurses were frustrated and discouraged. My 89-year-old mother, dying of uncorrected aortic stenosis, was refusing the pain medication the nurses repeatedly offered her. Years earlier, she had declined to undergo aortic valve replacement, despite my recommendation to do so. (In my family, it is praiseworthy to raise a child to be a physician, but foolish to listen to one.) Owing to a failed operation for a bowel problem, my mother was experiencing moderate, intermittent pain. But she refused repeated offers of oxycodone or morphine because, as she put it, “I want to keep my head clear.” My mother died in her own way, stoically enduring her pain, guided by her own idea of “death with dignity.”
Shortly after 9/11, the novelist Don DeLillo wrote, “Language is inseparable from the world that provokes it.” Referring to “people falling from the towers, hand in hand,” DeLillo noted, “Before politics, before history and religion, there is the primal terror.”1 I believe that the world of death and dying—even the mere imagining of it—evokes a similar primal terror in most of us; and this, in turn, provokes a linguistic response. The ubiquitous shibboleth, “death with dignity,” represents our deep-seated wish for control, comfort, and personal autonomy. That is all entirely understandable.
Joshua Pagano, DO
Ronald W. Pies, MD
Joshua Pagano, DO
But over the past several decades, death with dignity has become a kind of battle cry. Owing to the lobbying and proselytizing efforts of groups promoting physician-assisted suicide—euphemistically called, “medical aid in dying”—the phrase, death with dignity, has become nearly synonymous with the deliberate ingestion of lethal drugs, prescribed for people with terminal illnesses.2 In the marketplace of ideas, other modes of dignity in dying—and more importantly, in living—have been crowded out.
It is not my intent here to relitigate the heated debate over the ethics of physician-assisted suicide (PAS), the term adopted by both the American Medical Association3 and the American College of Physicians.4 My colleagues and I have already expressed our strong opposition to PAS in several venues.5-7 Rather, I want to take a deep dive into the notion of death with dignity by asking 2 main questions: First, is death with dignity even a viable concept? Second, how is the idea of a “dignified” death understood in a non-Western spiritual tradition—that of Jainism? Finally, I want to suggest that a fervent fixation on death with dignity can blind us to human values of greater depth and import.
Does Death with Dignity Even Exist?
In an extremely controversial essay published in 1974,8 renowned ethicist Paul Ramsey famously asserted, “There is nobility and dignity in caring for the dying, but not in dying itself.” Arguing from the perspective of a Christian ethicist, Ramsey insisted that:
“We do not begin to keep human community with the dying if we interpose between them and us most of the current notions of ‘death with dignity.’ Rather, do we draw closer to them if and only if our conception of ‘dying with dignity’ encompasses…the final indignity of death itself, whether accepted or raged against.”
Ramsey’s argument is complex and convoluted, but very clear in one respect: It calls attention to the “…grief over death which no human agency can alleviate.” I think Ramsey is arguing that we risk trivializing “the dreadful visage of death”—his phrase—by endowing it with a bogus aura of “dignity.” In this regard, I suspect that Ramsey would be largely in accord with the late Sherwin B. Nuland, MD, the surgeon whose book, How We Die, remains a classic of clear-headed realism. Nuland wrote:
“...the belief in the probability of death with dignity is our, and society’s, attempt to deal with the reality of what is all too frequently a series of destructive events that involve by their very nature the disintegration of the dying person’s humanity. I have not often seen much dignity in the process by which we die. The quest to achieve true dignity fails when our bodies fail.”9
Death With Dignity, Without Lethal Prescribed Drugs
Jainism is among the most ancient of the Indian religions, dating to at least the 7th–5th century BCE.10 Jainism is probably best known for its concept of ahimsa, defined as non-injury to all living creatures. Less familiar to most in the West is the Jain practice of Sallekhana, which is described as follows:
“Sallekhana is embracing the death voluntarily when both householders and ascetics foresee that the end of the life is very near, either due to the old age, incurable disease, severe famine, attack from the enemy or wild animal, etc. At such time, one overcomes all the passions and abandons all the worldly attachments by observing austerities such as gradually abstaining from the food and the water and simultaneously meditating on the true nature of the Self until the soul parts the body.”11
From the Jain perspective, Sallekhana is distinct from suicide in that, “Contrary to the suicidal intention, there is no desire to put an end to life quickly by some violent or objectionable means…” Rather, “…The person adopting this vow [of Sallekhana] wants to be liberated from the bondage of karma [the cosmic principle of causation] which has been responsible for all his ills in this world, and [from] the cycle of rebirths…”11
Is Sallekhana an example of death with dignity? Some would say so—but the Jain view is that Sallekhana represents “a person’s ethical choice to live with dignity until death”12 (italics added). I will come back to the life-with-dignity theme shortly. The main point for now is that, in marked contrast to PAS, Sallekhana is largely an autonomous practice, requiring no assistance from a medical professional legally authorized to dispense lethal drugs.
Sallekhana’s secular counterpart is called voluntarily stopping eating and drinking (VSED). Though far from a quick and easy way of dying, VSED is widely recognized as an ethical and compassionate option in end-of-life care—provided the patient and family are adequately prepared and emotionally supported.13 In some instances, VSED is used in conjunction with palliative sedation.14 Importantly, in one study comparing VSED to PAS, “…as compared with patients who died by physician-assisted suicide, those who stopped eating and drinking were rated by [hospice] nurses as suffering less and being more at peace in the last 2 weeks of life.”15
Life With Dignity: An Important Ethical Value
A few years ago, in Psychiatric TimesTM, I paid tribute to an Englishwoman, Hilary Lister, who died at the age of 46 after a long voyage of pain, endurance, and courage.16 As related by Daniel Slotnik in The New York Times:
“Ms. Lister was relegated to her couch for years by a degenerative disease that rendered her immobile from the neck down and left her in near-constant pain. At one point, the agony and tedium became too much to bear, and she resolved to end her life. ‘I had been a very active person as a child,’ she told The Sunday Telegraph of London in 2008. ‘I did sport. I played the clarinet. I went to Oxford University and studied biochemistry, and yet at that point, I not only couldn’t do anything, but I was also in terrible pain…I just couldn’t see the point in continuing, really.’ Then a friend persuaded Ms. Lister to come sailing, and she found a reason to live.”17
Over the years, Lister became an adept sailor who could navigate sailboats using mechanisms similar to those that control electric wheelchairs. Most remarkably, in 2005, Lister became the first quadriplegic person to sail alone across the English Channel, and later, to circumnavigate Britain entirely on her own. Throughout her many years of sailing, she endured almost unimaginable physical challenges. Nevertheless, she described how sailing renewed her sense of pleasure in life, saying, “It was as if I was free.”17 In 2018, she died in the hospital with her husband, Clifford, at her side.
Lister’s story epitomizes life with dignity, even in the face of profound suffering and incapacity. Her physical and spiritual odyssey—and her rejection of suicide—is a bold rejoinder to the death with dignity movement. The philosopher Michel de Montaigne (1533-1592) expressed a similar sentiment, shifting our perspective from dignity-in-death to dignity-in-life:
“Philosophy commands us to have death always before our eyes, to foresee it and to reflect upon it in advance…[but] if we have not known how to live, it is wrong to teach us how to die…If we have known how to live steadfastly and calmly, we shall know how to die in the same way…Life should contain its own aim, its own purposes; its proper study is to regulate itself, guide itself, and endure itself…”18
To be clear: Admiration for Lister’s fierce will to endure should not be construed as condemnation of people who take their own lives. Our role as psychiatrists is to understand what drives people to that tragic end, and to offer our best services in behalf of preserving their lives. And, to be sure, we have good reason, while we are healthy, to put our affairs in order; to stipulate what medical interventions we do or do not desire, should we be nearing death; and to exercise our right to discontinue futile treatments that merely prolong dying.
So, finally, is there such a thing as death with dignity? If there is, I believe it consists of facing death with courage and equanimity. Here again, we benefit from Montaigne’s plain-spoken wisdom: “I want death to find me planting my cabbages, neither worrying about it nor the unfinished gardening.”18
As for dignity itself, I have resisted offering a clear definition of the term, because it has been used in so many different ways throughout history.19 On one level, dignity may be understood as the value each human being possesses merely by virtue of being human. On the existential and spiritual level, I believe that dignity is an outgrowth of how we live each day. It emerges from the moral choices we make; from our acts of courage, kindness, and forgiveness; and from the beneficial contributions we make to our family, our loved ones, and society. Dignity grows in us when we “live steadfastly and calmly.” And dignity in death—if such a thing exists—is far less central to our humanity than dignity in life.
The philosopher Baruch Spinoza (1632-1677) put it this way: “The free person thinks least of all of death, and his wisdom is a meditation not on death, but on life.”20
Dr Pies is professor emeritus of psychiatry and lecturer on bioethics and humanities, SUNY Upstate Medical University; clinical professor of psychiatry, Tufts University School of Medicine; and editor in chief emeritus of Psychiatric TimesTM (2007-2010).
1. DeLillo D. In the ruins of the future. The Guardian. December 21, 2001. Accessed November 15, 2021.
2. Death with Dignity National Center. How death with dignity laws work. Death with Dignity National Center. 2021. Accessed November 15, 2021.
3. American Medical Association. Physician assisted suicide: code of medical ethics opinion 5.7. American Medical Association. 2021. Accessed November 15, 2021.
4. Snyder Sulmasy L, Mueller PS; Ethics, Professionalism and Human Rights Committee of the American College of Physicians. Ethics and the legalization of physician-assisted suicide: an American College of Physicians position paper. Ann Intern Med. 2017;167(8):576-578.
5. Geppert CMA, Komrad MS, Pies RW, Hanson AL. Psychiatrists must prevent suicide, not provide it. Psychiatric Times. November 18, 2019. Accessed November 15, 2021.
6. Pies RW, Komrad MS, Geppert CMA, Hanson A. Against assisted suicide. Psychiatric Times. July 8, 2021. Accessed November 15, 2021.
7. Pies RW, Hanson AL, Komrad MS, Geppert CMA. PAS versus involuntary commitment: is there a moral dilemma? Psychiatric Times. October 28, 2019. Accessed November 15, 2021.
8. Ramsey P. The indignity of ‘death with dignity.’ The Hastings Center Studies. 1974;2(2):47-62.
9. Nuland SB. How We Die: Reflections on Life’s Final Chapter. Vintage Press; 1995.
10. Encyclopedia Britannica. Jainism. Encyclopedia Britannica. 2021. Accessed November 15, 2021.
11. Tukol JTK. Sallekhana. Jainism Global Resource Center. 2021. Accessed November 15, 2021.
12. Kapoor R. SALLEKHANA: a person’s ethical choice to live with dignity until death by Rahul Kapoor Jain. JainaChannel. March 14, 2021. Accessed November 15, 2021.
13. Lachman VD. Voluntary stopping of eating and drinking: an ethical alternative to physician-assisted suicide. Medsurg Nurs. 2015;24(1):56-59.
14. Patel C, Kleinig P, Bakker M, Tait P. Palliative sedation: a safety net for the relief of refractory and intolerable symptoms at the end of life. Aust J Gen Pract. 2019;48(12):838-845.
15. Ganzini L, Goy ER, Miller LL, et al. Nurses' experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med. 2003;349(4):359-365.
16. Pies RW. Life with dignity: a tribute to Hilary Lister. Psychiatric Times. October 1, 2018, 2021. Accessed November 15, 2021.
17. Slotnik DE. Hilary Lister, a quadriplegic who sailed solo, dies at 46. The New York Times. August 22, 2018. Accessed November 15, 2021.
18. Montaigne M. Michel de Montaigne—The Complete Essays. Penguin Classics; 1993.
19. Soken-Huberty E. What is human dignity? Common definitions. Human Rights Careers. Accessed November 15, 2021.
20. Nadler S. Think Least of Death: Spinoza on How to Live and How to Die. Princeton University Press; 2020.