An Agnostic’s Life Thesis – Euthanasia and the Religious View
Dr. Tom Koch
This article originally appeared in the June 2012 issue of FOCUS.
After a particularly acrimonious argument at a meeting of bioethicists several years ago, a 30-something academic in an undistinguished suit followed me from the lecture hall. He and others had argued for the speedy demise of Terry Schiavo—by depriving her of hydration and nutrition—as ethically appropriate. Anything else was nonsensical, he had insisted. It was only religious nuts and disability fanatics who disagreed, “hijacking” the case for their own political ends. That, I responded, was arrogance and ignorance leavened by an unseemly measure of hubris. The argument for the ethics of Schiavo’s passive euthanasia were, I said, based on faulty science, subjective judgment, and prejudicial nonsense.1 His perspective was one of several and no better (and in fact) less well grounded than some others.
Assuming my pursuer wanted to engage in round two I was surprised when he offered his hand. “I want you to know,” he said as we shook politely, “while I disagree with you I respect religious beliefs. I didn’t want you to think I was attacking them.” I thanked him for his concern and then asked, quizzically, which religion he thought was mine. “Why, you’re a fundamental Christian, of course,” he said, “or maybe evangelical. I don’t know the difference, I’m ashamed to say.”
When I told him I didn’t either he was nonplussed. “Oh,” he said brightly after a moment’s reflection, “you must be Roman Catholic. Please forgive my making such an assumption.” When informed I was not Roman Catholic, or even Anglican, he was thoroughly confused. “Well,” he asked, “What are you? I mean, you have to be something, right?”
That an agnostic might hold to a position antithetical to his, one in many ways similar to those of persons of faith, was something he could not fathom. If I believed in life as a critical good, and in care as a principal virtue then, he thought, I had to be some form of religious nut.
AN AGNOSTIC’S VIEW
One does not have to be religious to argue against “euthanasia” or “physician-assisted suicide”. That said, the prevalent sense among many that arguments from religion —in this and other areas—should be disallowed because they are grounded in faith, is incorrect and inappropriate. Everyone argues on the basis of his or her convictions and to disparage the values of some because they are based on religious rather than secular texts is to dismiss, as moral convictions, a perspective that is perfectly grounded. To assume that some arguments—like those from religion— should not be heard is both paternalistic (we know better!) and undemocratic (so… shut up!). Humanist fellow travelers may argue similarly and with equal fervor, albeit with a different vocabulary, for positions that are similar to those advanced by persons of faith. The difference is we typically do so without reference to scripture.
Certainly the suggestion that persons of faith “hijacked” the case of the unfortunate Schiavo family was inaccurate. Those who, like Ms. Schiavo’s parents, argued the potential value of her life had at least an equal right to their position as those who saw her life as already ended despite her physical continuance. If there was hijacking here it was by those, like my questioner, who presented as singularly authoritative a perspective at least as contestable as any other.
What masquerades as a “liberal” perspective on these issues is a very recent political turn that began in the 1970’s and emerged as accepted wisdom only in the last decade of the twentieth century. It presents a libertarian ideal of not simply personal choice but social disengagement in its ethical advancement of “personal choice” in a manner that seems at least to me, to violate other, more general social tenants. The problem for persons of faith is that arguments from religion are typically framed with biblical references that do not easily serve in the secular environment of medico-legal argument today. That doesn’t mean they are wrong, only that they are not persuasive to those who might be convinced by other language.
INDIVIDUAL AND SOCIAL VIEWS
At heart, euthanasia proponents advance a libertarian ideal of individual sovereignty and unimpeded personal choice as a naturally organizing precept. They embrace as an ideal, a la John Stewart Mill, the widest possible range of individual sovereignty in which social prescriptions are to be kept at the absolute minimum.2 As one of the principle authors of contemporary bioethics—a strong force in the general disavowal of Ms. Schiavo’s care—makes clear, the ethics of bioethics is as beholden to Mill as it is to high moral philosophers like Emmanuel Kant.3
Bioethicists typically use “euthanasia” and “physician- assisted suicide” (PAS) as nouns to describe acts that may be assisted by another but are solely the moral act of the person seeking death. Your life, they say: your choice. Those assisting a death are enablers but not actors. That, however, is misleading. A more precise language describes these acts as physician-assisted or directed termination (PAD or PAT), the active ending of a life by a physician who either provides the means for an individual self-termination (an overdose of pills), withholds treatments that result in death (hydration and nutrition, for example), or actively terminates a person through the delivery of a drug (orally or by injection) whose only purpose is to arrest cardio-pulmonary function. Described in this manner PAD and PAT are revealed as not simple actions of individual choice but as social activities whose performance and rationale extends well beyond the person.
We may lament but cannot inhibit a person’s serious desire to kill him or herself. The right to end one’s life is thus not at issue. PAD/PAT proponents demand, however, not solely the freedom of individual action but social support for termination when a person’s fragility reaches a point they can no longer kill themselves. They seek societal approval—and financial compensation—for the active intercession of physicians and pharmacists whose services will be paid for, in Canada, by provincial health systems and, in the United States, by public or private insurers.
This was the demand of Canadian Sue Rodriguez, a person with ALS (amyotrophic lateral sclerosis), for example, in a claim rejected in the 1990’s by the Supreme Court of Canada.4 In 2011, another woman with ALS, Gloria Taylor, advanced a similar claim in a widely reported case heard in December 2011 in the Supreme Court of British Columbia.5 In these cases what was demanded was not a “right to die” (everyone has that) or to suicide (we cannot prevent it) but instead a duty by the state, which is to say the community, to support medically (through the services of physicians), socially (through the laws and provincial health organizations) and financially (through physician and pharmacist compensation) an individual’s decision to die at a specific time.
The argument for PAD/PAT is not about individual rights. None of the many affidavits submitted in support of the Carter claim in 2011 argued for an unbridled right for self-determination. None argued a social duty to assist and support any self-aware, rational person in his or her desire to die for any reason. In affidavits from Canada, Belgium, Holland, and the United States supporters of the Taylor petition argued the reasonableness of a wish to die only in the case of those who are medically restricted by a limiting chronic disease. In restricting PAD/PAT to the frail and sick they thus support — implicitly — the idea that persons with limiting conditions are better dead and that society should accept that the lives of the frail are not equally worth living because of restricting medical conditions.
The despair of the afflicted is as old as the tale of Jonah who cried, “Oh Lord, please take my life from me, for death is better to me than life.”6 And, of course, there was the wail of Job who, afflicted both by boils and the commiseration of friends (tenured philosophers, I suspect, and not the least of his afflictions), cursed his life and questioned his continuance. And really… Job had a right to be discouraged. “My spirit is broken, my days are cut short,” he says. “The grave awaits me” and why not get there quickly eh?7 Writers throughout the centuries have written similarly when faced with dire circumstances. In lectures and in my practice I prefer to cite Leo Tolstoy’s horrible but magnificent tale, The Death of Ivan Illyich.8
In all these stories—across centuries and cultures—I hear as well the voices of people I have worked with and cared for through a range of progressive diseases and limiting conditions, from cancer (“I am nothing but skin and bones,” Job says)9 to dementia to stroke. The life each person knew was ended (as was Job’s) and the future seemed to each at best bleak if not intolerable. And whatever their own perceptions, many in advanced stages of these conditions are seen by others as living lives unworthy of continuance. Binding and Hoche first advanced this position, in modern times in 1920’s Germany.10 Their argument was roundly rejected after World War II until revived, in a slightly modified form, by ethicists and politicians in the 1980’s. Then the argument reformed as either a virtuous act of self-determination or more simply a necessity based on cost efficiency. Famously, for example, Gov. Richard Lamm argued against the maintenance of people with serious chronic conditions on the grounds the care would beggar the state.11
Few wished to say, however, this was simply about money. “Death with dignity” instead became the battle cry of those supporting PAD/PAT in its many forms. For them there was no dignity on Job’s dung heap or in the belly of the whale. Nor, of course, do they see virtue in the lives of people like Oliver Sacks’ patients in Awakenings who were, he said, “made great by suffering”.12 The PAD/PAT position is, instead, that a life restricted becomes by definition a life unworthy and thus deserves society’s support in its ending. And so like Natverlal Thakore, a Canadian philanthropist with early Parkinson’s disease who was the sixty-seventh death attributed to Jack Kevorkian, a Viking’s pristine death is better than a life lived in a body like Job’s.13
This argument falsely equates dignity with normalcy. It assumes a life restricted by disease is no life at all, or at least a life unworthy of continuance. The argument is less moral than aesthetic,14 however, one based on a standard of normalcy and normal function. It denies the social realities that are critical to anyone’s sense of life’s potential across a range of life states. If one is reduced to a bed in a nursing home, without friends and without attention or stimulation— fed three times a day and turned twice, as the saying goes— then life will seem an untenable burden. It is not simply the nature of the condition and its limits, however, but the degree to which we support or ignore persons with limiting conditions that makes such lives miserable or worthwhile.15 Where there is social support for the person with cognitive, physical, or sensory restrictions life need not be so bleak.
It is this—the social context of individual despair and need—that the PAD/PAT enthusiasts do not consider. In the failure to assure the possibility of a life with dignity, despite restrictions, they offer death as the sole option and thus offer not independence and choice but only termination. They are complicit rather than compassionate, injudicious in the choices presented rather than judicious in their arguments from “freedom”.
When there is socioeconomic support, and after a period of adjustment, the lives of people with a range of limits may be, while different, still full and interesting. The most restricted condition we know of is “locked-in” syndrome in which persons have control over nothing but, perhaps, an eye blink. And yet, a recent study of British citizens with these limits found a relatively high degree of life satisfaction—“quality of life”.16 Similarly, while patients suffering high spinal injuries universally go through a period of despair and suicidal contemplation, more than two-thirds will, over time, and “against all odds” find life interesting, satisfying, and worthwhile.17
The same can be said of persons with ALS, the most frequent diagnosis (Multiple Sclerosis was second) among the persons terminated by PAD/PAT physician Jack Kevorkian.18 Indeed, ALS is today assumed to be an inevitably terminal disease, like an untreatable cancer. The possibility of living past its characteristic respiratory crisis is typically ignored when its patients are put forward as candidates for PAD/PAT. But while nobody recommends ALS (or MS, or paraplegia) as a lifestyle choice, life on a ventilator can be meaningful and fulfilling. In most cases it will be a terminal disease only if continuous ventilation is refused.
Life on a ventilator…what kind of life is that? Ask cosmologist Stephen Hawking who has continued to write and work after more than two decades on ventilation. He does not think he would have been better dying when his ALS reached its respiratory crisis.19 And, similarly, Mr. Justice Sam Filer remained an active jurist in Ontario, Canada, following his respiratory crisis.20 We know something about the positive potential of this kind of life thanks to the writings of Rhode Island newsman Brian Dickenson who wrote a newspaper column based on his life as a person with ALS on ventilation.21 For a more detailed account of life at the extreme there is the book by Jean-Dominique Bauby, locked in except for an eye- blink, following a massive stroke. His report on life at the extreme, The Diving Bell and the Butterfly,22 became an unexpected smash hit made into a movie in 2007.
THE SOCIAL CONTEXT
And so the PAD/PAT enthusiasts would seem to face an irreconcilable contradiction. They do not say, although they may think, the lives these people live are unworthy. But they argue the restricted conditions of these lives are worthy of termination. When asked about this they merely shrug and say, “Well, that’s their choice. Each person should choose for him or herself.” But the choice is never solely the person’s.
It is as much a matter of social attitude and support as it is of individual choice. Hawking continued his work with the support of his family and, as importantly, his publisher and his university. Brian Dickenson had the support of a health insurer and the newspaper where he worked, the Providence Journal-Bulletin, whose editors refused to assume his physical restrictions required his professional termination. Bauby was a well-known and wealthy editor with the financial means (and the support of the French social support system) to turn his condition into the best piece he ever published.
To say “it’s their choice,” therefore, is to deny a social context in which life and death choices are encouraged or discouraged. Hegel dismissed this long ago as empty formalism, adolescent and vacuous. “If we hear it said that the definition of freedom is ability to do what we please, such an idea can only be taken to reveal an utter immaturity of thought …”23 To argue that immaturity is to permit the debate over life and death to occur as if social stricture or support were not absolutely essential ingredients in the lives of us all. It is to assume that we are all isolates. And here is the crucial error the PAD/PAT enthusiasts insist upon. Their argument is, at its center, not for individual responsibility but for the absence of a social responsibility in the care and continuance of the fragile.
This ideal of the free individual irrespective of social circumstance is bad philosophy and bad social science. “My individual self is not something which I can detach from my Relationship with others, or from those attributes of myself which consisted in their attitudes toward me. For what I am is, in large part, determined by what I feel and think; and what I feel and think is determined by the feeling and thought pervailing in the society in which I belong,” wrote Isaiah Berlin in a critique of Mill’s philosophy. “I form not an isolable atom, but an ingredient (to use a perilous but indispensable metaphor) in a social pattern.”24
We are only free to choose from what is available to us.25 We may want a treatment that, in the context of resource scarcity and profit maximization, is not made available to us. Accepting that reality we lose the possibility of effective choice. The general result, Berlin writes witheringly, is to advance as complete “a doctrine of sour grapes: what I cannot be sure of, I cannot truly want.”26
RELIGION AND THE SECULAR
One can argue this fundamentally social position based on scripture, of course. New and Old Testaments are rife with arguments for social care and concern (as are the Talmud and pretty much all other religious texts). All such scripture includes a recognition of the limits of the individual’s power to control his or her destiny and the importance of social elements in the lives of the individual. But arguing from scripture only works for those who accept its legitimacy. One can, however, translate those ideas—and they’re deeply embedded in our cultural fabric—into a secular frame without losing the idea.
For example, one can argue about the nature of human dignity and its importance, irrespective of function, on the basis of scripture.27 One can argue similarly but ecumenically on the basis of a slew of international conventions enacted since World War II in large part to inhibit the type of human degradation that occurred in World War II Nazi Germany and elsewhere.28 These may serve as arguments of inclusion that insist respect for human dignity demands communal effort, both political and social. This in turn can be seen to insist upon the broad provision of life with dignity despite restrictions before even discussing the termination of immensely restricted lives.29 To assume anything less than a social obligation is to assume the unworthiness of the persons whose lives may be forfeit as a result.
ARGUMENTS FROM EXPERIENCE
In The Death of Ivan Illyich, Tolstoy paints the portrait of a silly man who is dying and terrifed of the process. As he grows frailer he sees all the commercial and polite social ties of his world as meaningless. “Why all this horror?” he asks. “What is it for?” His last days are spent in screaming terror and existentional pain. The terror stops when his son, grieving in the face of his father’s anguish, kisses his hand. Ivan Illyich opens his eyes to his son’s affection and sees as well his wife, “unwiped tears on her nose and cheeks, a look of despair on her face”.30 Their life and love affirms him in his life and with their care his pain resolves. Illyich dies peacefully.
Tolstoy’s story was a secular search for meaning in a world that seems meaningless and trite. The answer, for him, lay not in the isolate’s demand (kill me now) but in our lives that are lived together. There is philosophy here and good medicine, too. In the afterward to Awakenings, neurologist Oliver Sacks speaks movingly of the near catatonic patients he had first treated with L-Dopa. They are for him heroic figures “made great by suffering” who in turn made heroes of those nurses and attendants who for years had cared for them. They were persons—horribly restricted—but that they were was enough and their care… the fact that they were cared for… spoke to a value of life and living irrespective of circumstance that is the central theme of many of Sacks’ works.
In the nexus of experience the fine philosophies of control and independence advanced by PAD/PAT enthusiasts comes to this. Either one is disconnected and uninterested in the person, or, if one is engaged in life’s associations, and in care, the simple solution of death in favour of a communal and social response must be rejected. No better evidence for this is available than the reports of Utah philosophy professor Peggy Batin who has for years written in favour of PAT and PAD as an ethical right.31 Then Ms. Battin’s husband, Brook Hopkins, suffered a severe high spinal injury resulting in paralysis with no hope of recovery.
In the course of his care Mr. Hopkins became discouraged. His physically active life was ended, his future likely to be one of continual need in every aspect of his daily life. He was breathing with mechanical assistance, confined to a hospital bed, without control of his legs, limbs, or other bodily functions. He was tired and sometimes in pain. And so he told his wife, the champion of PAD/PAT, ‘‘I want to die, I just want to get this over with… . Just give me a pill.” 32
Here was a decision to die by a professor in full possession of his mental facilities. He expressed his wish to a wife who had long championed the right of self-termination in such cases. What did Prof. Battin do? Her response was to “smile evenly in a steely controlled way” and ignore his request, to wait for him to change his mind, or perhaps more accurately, for his mind to be changed by her. “How could he want to die, when he has already suffered so much to get to this point, and when he would leave so much behind?”33
It is easy to argue for the termination of others when one is uninvolved, when it is a theoretical matter of philosophical rights and responsibilities couched in the language of high philosophy or the realities of economic limits. To say another is better off dead—and that the fragile may choose death without our interference—is an easy argument to make by the uninvolved. But when the life in question is a loved one, important and precious, the charade falls away. Ms. Battin loves her husband and whatever his physical limits that love trumped a lifetime of philosophical writing. So she fought for his care and denied his request for death.
Were this a religious parable Prof. Battin would have repudiated her advocacy for PAD/PAT. It is not, however, and she did not. She does now say, in an article, earlier cited, that “generalization is impossible” but that does not prevent her from generalizing still. But in the crucible of crisis she argued for living rather than dying with dignity; she sought the maximization of a restricted life rather than its simple termination. She chose caring even when in the philosophy she espouses caring seems rarely to be a subject of careful concern. The faith she found, at the moment of crisis, was faith in another, a faith in her love for her husband. And some—religious and secular—would say that is where our ethics should begin, the basis on which it should be constructed.
One may not be able to argue, today, on the basis of Job or Jonah or any other scripture. They will hold little sway in these secular debates. But one may take the story of Battin as a parable whose message is as much religious as it is philosophical…love counts. One may take the lives of those who condemn PAD and PAT while living with restrictions as parable, too. They are those in the belly of the beast; their argument for life one that is phenomenological. That is, they speak from experience and not against it.
Let me end where I began: It is a mistake to define ourselves as “religious” or “secular,” and thus “pro” or “con”. We all are responsible as citizens, and in medicine as professionals, with a duty to argue these issues to the best of our possiblities from the best of our beliefs and experiences.
- Tom Koch, “The challenge of Terri Schiavo: Lessons for Bioethics,” Journal of Medical Ethics 31 (2008), 376-378
- John S. Mill, On Liberty and Other Essays. Ed. John Gray (N.Y.: Oxford University Press, 2008).
- Tom L. Beauchamp, “History and theory in ‘Applied Ethics’,” Kennedy Institute of Ethics Journal 17, no.1 (2007), 55-64.
- Rodriguez v. British Columbia (Attorney General),  3 S.C.R. 519. Accessed Jan. 4, 2012: http://scc.lexum.org/ en/1993/1993scr3-519/1993scr3-519.html.
- Carter et al. v. The Attorney General of Canada (July 12, 2011), Vancouver, No. S112688 (Supreme Court of British Columbia), Amended Statement of Claim.
- Jonah 4.3.
- Job 17:1.
- Leo Tolstoy, The Death of Ivan Illyich, Trans. Lynn Solotaroff (NY: Bantam Books, 1981).
- Job 19:20.
- Binding, Karl and Alfred Hoche. Permitting the Destruction of Unworthy Life. Leipzig, Verlag von Felix Meiner, 1920. Walter Wright, Patrick G. Derr and Robert Solomon, Trans. Issues in Law and Medicine 8:2 (1992), 231-265.
- Richard D. Lamm, “Columbus and Copernicus: New win in old wineskins.” Mount Sinai Journal of Medicine 56, no. 1 (1989), 1-10; Richard D, Lamm, “Saving a few—sacrificing many, at great cost.” New York Times (Aug. 2 1989), 23. Accessed Dec.26, 2009.http://www.N.Y.times.com/1989/08/02/opinion/saving-a-few- sacrificing-maN.Y.-at-great-cost.html.
- Oliver Sacks, Awakenings,Revised Edition(London:Picador,1982).
- Dianne Rinehart, “Natverlal Thakore goes to the U.S. for a Dr. Kevorkian death.” Vancouver Sun ( September 23, 1997), A1.
- John Lantos,“Johnson, Singer, Almodovar, and the aesthetics of bioethics,” American Society for Bioethics and Humanities Exchange 6 (2003), 27.
- Paul Steven Miller. “The Impact of Assisted Suicide on Persons with Disabilities—Is it a Right Without Freedom?” Issues in Law & Medicine. 9:1 (1993), 47-62.
- Marie-AurèlieBruno,JanL.Bernheim,DidierLedoux,Frèderic Pellas, et al., “A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority.” British Medical Journal Open Access (25 February, 2011). Accessed June 25, 2011 http://bmjopen.bmj.com/ content/early/2011/02/16/bmjopen-2010-000039.full.pdf.
- Jenny M.Young & Paula McNicoll, “Against all odds: Positive life experiences of people with advanced amyotrophic lateral sclerosis,” Health and Social Work, 23, no. 1 ((1998), 253–260.
- Tom Koch, “On the subject(s) of Jack Kevorkian, MD. A Retrospective analysis,” Cambridge Quarterly of Healthcare Ethics. 7, no. 4 (1998), 436-441.
- Steven Hawking, Black Holes and Baby Universes. and Other Essays (NY: Bantam, 1993), 167.
- Stephen Bindman. “Judge Stays on Bench to Fight His Disease’s ‘Death Sentence.’” Toronto Star, January 11, 1993. A1.11; D. Goldblatt, “A life-enhancing condition. The honourable Mr. Justice Sam. N. Filer. Seminars in Neurology 13, no. 4 (1993), 375-79.
- Florence Graves, “Writing for his life,” American Journalism Review 17, no. 2 (1997), 24-31.
- Jean-Dominique Bauby, The Diving-Bell and the Butterfly: A Memoir of Life and Death (NY: Vintage Books, 1997).
- Singer 1983, 34.
- Isaiah Berlin, Four Essays on Liberty (NY: Oxford University Press. 1969), 157.
- Tom Koch, Thieves of Virtue: When Bioethics Stole Medicine. Cambridge, MA: MIT Press, In Press. (2012).
- Berlin 1969, 139.
- Hendrik van der Breggen, “The Image of God: Why life is worth defending against physician-assisted suicide,” Focus Magazine 31, no. 2 (Spring 2011), 8-13.
- For a review of some of these conventions, and this idea, see: Fabrice Jotterand, “Human dignity and transhumanism: Do Anthro-technological devices have moral status,” American Journal of Bioethics 10, no.7 (2010): 45-52.
- Tom Koch, “Living vs. Dying ‘with dignity’: A new perspective on the euthanasia debate,” Cambridge Quarterly on Healthcare Ethics. 5:1 (1996), 50-60.
- Leo Tolstoy, The Death of Ivan Illyich. Trans. Lynn Solotaroff (NY: Bantam Books, 1981), 132.
- Timothy Quill and Margaret P. Battin, Eds, The Case for Physician- Assisted Dying: The Right to Excellent End-of-Life Care and Patient Choice, (Baltimore: Johns Hopkins University Press, 2004).
- Carter et al. v. The Attorney General of Canada (Nov.2011), Vancouver, No. S112688 (Supreme Court of British Columbia), Affidavit II of Professor Margaret Battin. Also see Ms. Battin’s Blog about her husband’s care at http://brookeandpeggy.blogspot.ca. See especially the Nov. 9, 2011 entry.
- Battin reports this instance in Margaret Battin, “The irony of supporting physician-assisted suicide: a personal account,” Medical Health Care and Philosophy 13 (2010), 403–411.