I first heard the term “euthanasia” when I was seventeen. Not because someone close to me was struggling with a painful, protracted terminal illness, but because euthanasia happened to be the national debate topic that year. In those days, the distinction between active and passive euthanasia hadn’t been made - actively assisted death was the implicit sense of the term. As members of the school’s forensic team, we were expected to be able to debate either side of the question, and the presentation of our facts, the logic of our reasoning, and the ability to rebut the arguments of our opponents were the criteria for winning the debate. In short, the issue was rhetorical.
I wish in real life it were that simple. I wish we had resolved the issue that year through the efforts of intense young high school and college students. I also wish I’d saved my notes - it would be interesting to see if, almost 50 years later, the argument had been advanced or even changed in some major way. I honestly don’t remember. As an aside, the national debate topic for the previous year was on what was then called socialized medicine. That, too, is an issue which is still with us. Yet Dutch physicians warn that it would be dangerous for a society which does not enjoy universal health care coverage to legalize active euthanasia. It is imperative, they believe, that financial access to medical care not be a factor in the decision to intercede in the process of dying. That euthanasia not be a substitute for a lack of medical care, especially in this era of so-called managed care.
That’s something to think about. Discomforting as it may be, the whole issue is something for Unitarian Universalists to think long and hard about. Several years ago at General Assembly we passed a “death with dignity” resolution in which we advocated “the right to self-determination in dying, and the release from civil or criminal penalties for those who, under proper safeguards, act to honor the right of terminally ill patients to select the time of their own deaths...” And, just this year, UUA has published a new pamphlet on this topic - you’ll find it on the front table.
While no UU congregation or individual is bound to support the resolution, it behooves us to bear in mind that a majority of us does. And, in that regard, we are at one with mainstream America; we do not espouse an elitist position, as sometimes charged. Polls consistently reveal that up to 70% of the general public support physician-assisted euthanasia if requested by a terminal patient. A study reported this week in the New England Journal of Medicine shows that, while only six percent of physicians admit assisting in deaths, 36% would do so if the procedure were legal. Further, half of Washington’s physicians supported that state’s “Right to Die” Initiative 119, and another poll of hospital administrators and other health care executives revealed that 52% believed that euthanasia should be a “basic” service to terminal patients.
Given this level of support, why are we almost no farther along in resolving this issue that we were in 1948 when it was the national debate topic? For the most part, I think it is because of the enormity of getting from the theoretical (or abstract) to the applied. How do we formulate the ethical, legal and medical standards which would safeguard this process against the very real concerns that give pause even to proponents of active euthanasia? Further, Dan Maguire rightly points out that “if you don’t know the objections to your position, you don’t know your position.”
It’s not rhetorical with me any longer - I want the right to choose the time and means of my death in certain circumstances. I want the terms I specified in my Living Will and Medical Power of attorney following a heart attack seven years ago to be honored. And I want anyone who may have to assist me to feel free to do so without fear of repercussion.
“What” and “why” are only two of the questions Maguire asks in making ethical choices concerning death. He also requires that each case-by-case decision be considered in light of the how, who, when and where. And that feelings - “what the heart knows” - also be considered in framing the final outcome. Maguire ducks none of the hard issues - those things some fear would send us hurtling down the slippery slope - in his critique. Nor does he avoid coming to grips with the tricky problem of implementation.
In his opinion, when the choice of death must be made for an infant, or a mentally or physically incapacitated person, a court-appointed “Committee of the Person” should be charged with the decision, honoring the wishes of the individual if known. Where that wish is not known, the decision for euthanasia should not be solely that of the doctor or even the family - in both cases there is danger of a subjective response. But neither should the decision be left exclusively in the hands of strangers who have no idea of the special circumstances of each unique individual.
There are no perfect answers. We will continue to live with ambiguity. We can only try to assure that we make the best possible decisions under any given set of circumstances. And, as long as the odds against such occurrences are, in rare cases a cure will be found tomorrow. And Rip Van Winkle will sometimes awaken after a long, long sleep. Because of the advances in medical technology - because as a society we are living longer - this will not be a rhetorical question for many of us. And even if euthanasia (or assisted suicide, as it is currently called) becomes legal, the decisions will still be painful and difficult. Like abortion, suicide is a recourse of last resort.
Actually, I prefer the term euthanasia to either “assisted suicide” or “mercy killing.” For me it connotes cutting short the death process, while most suicides of physically healthy individuals interrupt the life cycle - a very different circumstance. Or perhaps we need a totally new term - one which does not carry with it (as it must for some) the baggage of Nazi atrocities. Semantics are important, in that they can sometimes trigger emotional responses, especially in situations which are already heavy laden with emotions.
We had an example of this in my own family a few years ago. My identical twin sister suffered what is termed in layman’s language a spinal cord stroke, to distinguish it from the more common stroke which affects brain function. Her partner of many years rushed her to the closest hospital where, as I understand it, there was medical resistance to putting her on a respirator. As the doctor later explained it, only five percent of persons in such circumstances survive, and of those that do, only five percent recover anything remotely resembling quality of life. We were thus advised to pray that she would die quickly.
Most of those who loved her weren’t ready for that. Not her five children. Not her twin sister. She was literally the other half of me - a half which I did not want to lose. Yet my older sister begged to take her off the respirator: she said she would personally prefer to die than live bound by the confines of a wheelchair. Kitty beat the odds, and after a year in a rehab hospital, gained considerably more function and quality of life than even the most optimistic of us had dared to dream. She says we made the right choice - that, since her mind was never impaired, it never occurred to her that she might die. But she’s told us that, should it happen again, she wants us to let her go. She no longer has enough energy to face the fight for recovery again.
It is so terribly difficult to decide for others. Three people close to me over the years have died from inoperable brain tumors, which to me as a caring observer seemed an agonizing and protracted process. I would have opted for assisted intervention; none of them did. The first of these was Rosemary, whose diagnosis was made just before she was due to complete her doctoral program in social anthropology at Columbia University. For financial reasons her doctor advised that she consider receiving X-ray therapy at James Ewing - a city-owned facility - rather than at the privately-owned Memorial Hospital next door. He explained that the two institutions shared the same medical staff and treatment facilities; the only real difference was that the patients at Memorial had isolated private rooms, while those at Ewing were in eight-bed wards.
But there was another difference: the suicide rate at Memorial was many times higher than at Ewing. In the public institution there was too much going on for anyone to dwell at length about their own problems. The less advantageous patient:nurse ratio was turned into a plus. Patients cared for each other. Rosemary’s contribution was singularly hers. Within a few days she had all of her roommates recognizing the special attributes in each other which are so often overlooked. No one was ordinary to Rosemary.
Many former patients returned as volunteers. I heard one woman who had undergone over forty operations for throat cancer saying it was worth staying alive just to see what new project the volunteers would come up with each day. And every day at two o’clock visitors crowded the lobby waiting for the elevator to take them to the wards. No one ever visited just one person; you belonged to the entire ward. And you’d better come dressed to the nines - that was something else the patients waited for eagerly. No one would have chosen the experience, but they took from it much that was positive. Rosemary died quietly at home two years later. She never wrote the trilogy on human relations that had been her goal. But she lived it every day and served as a mentor for me and many others.
We have no way of knowing what lies ahead for any of us. When I was taking a course in death and bereavement in seminary, our first assignment was to visualize our own deaths. I wrote about what I’d like mine to be - a tranquil death at the end of a long, productive life, with enough time to put my affairs in order and say proper good-byes. And then I acknowledged that it was unrealistic to expect that degree of control or good fortune in this day and age - in a time where the natural compassion of health care providers is strongly tempered by the threat of malpractice suits. What should be an ethical decision is currently mired in legal considerations. Conversely, some physicians fear that residents in certain hospitals could be forced to assist with dying, just as some are required to do abortions despite their personal views and values. Oregon’s new law continues to be challenged, including concerns from those who fear that tax funds might be used to finance euthanasia.
Some of these are also my concerns. Another is the caution I’ve already touched on by the Dutch physicians: the questionable wisdom of putting legal euthanasia in place prior to establishing a universal health care system. And there is real cause for such a concern. A guest editorial in Newsweek five years ago was by Katie Lyle, who serves as a board member with three agencies representing handicapped people. She asked us to consider the case of a 40-year old man, profoundly retarded, who was deinstitutionalized and placed in a community group home. His recent behavior was so abusive and disturbing that he was apt to lose his placement and be turned out on the street. Rather than face that prospect and all it implied, Lyle suggested that Henry and those like him be humanely put to sleep. Society had already spent $1.5 million on him, and the economy could not bear much more. We shoot horses, don’t we?...
I find that view terrifying. But I am also terrified by the thought that someday I might become an intolerable financial burden to my children. Many states are moving towards requiring adult children to contribute significantly towards the nursing home care of elderly parents. My children can’t afford that; they have their own families to consider. So I tell my kids to send me out on an ice floe like the Eskimos when I reach the stage where I can no longer be productive. Interestingly, only a third of the people in a Gallup poll believed that being a burden to one’s family justifies euthanasia. I’m obviously in the minority here.
In Michigan, perhaps more than elsewhere, we were sensitive to this entire issue. Yet despite (or perhaps because of) the national publicity around Jack Kavorkian, the rate of approval for euthanasia is even higher there than for the nation as a whole. Is Dr. Kavorkian a messiah or a menace? A champion or a clown? I cannot stand as his judge; I cannot say yet with any certainty whether he has helped or hurt the cause of euthanasia. I can only recall my feelings when I first learned the circumstances of his brush with both the law and ethics. The setting for those deaths was the most unsettling: his rusty old VW van. Hardly death with dignity. More recently, despite Michigan’s laws aimed at curtailing him, Kavorkian has stepped up his activities: five this year alone, and not all of them terminal cases.
Do we blame the practitioner for these circumstances? Do we blame the patient? Or do we, as a society accept our moral responsibility to offer and define a wider range of options from which each individual can make an informed choice when faced with a life or death decision? We must move from the arena of childlike black and white taboos to an adult stance, which seeks to permit case-by-case considerations resulting in a course of action which achieves the greatest good. And we must do it soon. Amen