Death...On Our Own Terms
River Road Unitarian Church
Sunday, November 5, 2000
Scott W. Alexander
I will not give you a name, a place, or a time - because of the lingering legal murkiness of it all -- but I shall never forget (nor regret) my role in helping to hasten the death of this dear colleague of mine. This friend and fellow minister had been suffering horribly with HIV/AIDS for many months. His immune system, long ago totally compromised, was unable to fight off a whole host of terrible infections and painful afflictions. This proud man (and lover of books) had gone totally blind, he was unable to care for himself even on the most rudimentary physical level, had to fight for every breath and required constant oxygen and could not walk more than a step or two on his terribly swollen legs. This poor man was dying a slow and torturous death, and was in a great deal of unanswerable physical pain. Toward the end, all I could do to bring him some measure of comfort when I visited him was massage his feet, back and legs. Finally, one early evening, the call came that I shall never forget. It was this man's physician with whom I had been working to coordinate his care and support. The doctor said, "Scott, as you know, for days now he has been begging me to put an end to his misery. There is nothing more medically I can now do for him. I cannot even effectively manage his pain and discomfort. Unless you tell me it is wrong, I will go back tonight and put him on a strong morphine drip which will put him into a sleep from which we will never awake. He will die, with our help, within 36 hours." After some silence (but very little doubt) I said, "Doc, it will not
be wrong, it will not be wrong, in fact I am sure it is the right thing to do, you have my full and grateful support." And so my friend, as he so desperately wanted, died peacefully before the next dawn.
A few Sundays ago during Joys and Concerns, RRUC member Darren Marquardt shared a moving and amazing story about his father. I asked his permission to retell it here. A few months ago, Darren's dad had a massive stroke near his home in Minnesota while riding a motorcycle around his farm, and was rushed to the hospital, not only comatose from the stroke, but also badly injured from the accident that followed. The medical team repeatedly ran brain scans and other sophisticated neurological tests, and informed the family that Darren's father (who had been put on life support immediately after his fall, receiving both life-saving oxygen and nourishment) would never awaken and recover any quality or awareness of life. They said he would almost certainly spend the rest of his life in a "vegetative state." and held out little hope for the family. Now I must tell you that had I been their minister on site, I in all likelihood would have strongly encouraged the family to ask that this man be taken off life support and be allowed to die a natural, quiet, humane death. But Darren's family (who did not at the time doubt the grim diagnosis) could not bring themselves to this hard decision, so his father was moved - life support and all - to a nursing home...where, a few weeks later, he suddenly and miraculously woke up, and asked what in the world had happened to him! Darren's father is now home again, fully human and aware, looking forward to a nearly normal and active life once again...all because his family (erring on the side of caution and commitment to his life) continued him on life support beyond all hope. Everything I know (about the value of persons and life) says it would have been wrong -- tragically, mistakenly wrong -- had this man been taken off life support. We must never forget that sometimes, the doctors, with all their equipment and expertise, are wrong.
Again, there is no need for a name, but here is the context. Someone I dearly love, who has been a mentor and a second father to me for many years, has very strong feelings about his desire to be able to control his fate as the end of his life approaches. One night over dinner (which we were enjoying with Collins and this man's wife) the subject of assisted suicide came up. This man said to me, "Scott, I hope that if I am ever terminally ill and incapacitated (and thus unable to end my life myself) that you would (at my request) give me a fatal dose of pills or put a pillow over my face until I stop breathing." Without much hesitation, I responded, "No, my friend, no, I would not and could not consciously, actively participate in your demise...I love you too much, and am too grateful for your presence in my life (and in the lives of so many others you touch with such kindness and care) to ever participate in such an act. I just couldn't." Unsatisfied with my response, my friend then pushed me further in the conversation, suggesting (with very little equivocation, much to my discomfort) that if I truly loved him I would not hesitate assist him in ending his life when and how he deemed necessary. But I stood my ground, saying that if in fact he ever were in such a sad and terminal situation I would work with the doctors to help manage his pain, and be present to offer whatever comfort and support he needed, but I would not and could not actively assist him in ending his life. I still feel this way (grateful that I am that my friend remains in good and robust health, and so this all remains blessedly hypothetical) but everything in my heart says it would be wrong (and incredibly impossible on a personal level) for me to in any way help terminate my friend's life. I do not believe I -- or any other loved one of a terminally ill person -- need ever feel the need to apologize or justify such a refusal on the side of life...it is simply a matter of the heart.
Some of you may not realize that the first person Dr. Jack Kevorkian administered his lethal cocktail to was a Unitarian Universalist. Her name was Janet Adkins, she was a member of the First Unitarian Church of Portland, Oregon, wife and mother of several grown children, and an accomplished pianist. This wonderful woman (I've talked to her minister about her) had started to experience the ravages of Alzheimer's disease, and when she heard that there was a doctor in Michigan who would assist patients to die, she called him and begged him to end her life, which (with very little consultation and care) he did. Now at first when I heard about her self-chosen death, I was inclined to support her decision. As a Unitarian Universalist I generally believe people should be empowered and enabled to make the maximum number of personal choices, both in their living and in their dying, and I know how devastating Alzheimer's can be. But then I learned more about her precise medical condition, and my ethical discomfort (both with her decision and Dr. Kevorkian's) began to rise. At the time of her self-induced death, Mrs. Adkins' Alzheimer's was in the relatively early stages. It was not that her disease had rendered her unable to play the piano (she could still do that most ably and enjoyably), it was that she could no longer play all her favorite Chopin nocturnes from memory, and was thus obliged to use the score. I am told that this particular loss of personal functioning and high capacity (relative as it was) disgusted and dismayed this perfectionist person, and caused her emotionally to immediately seek the termination of her own life. Now, as a Unitarian Universalist committed to the right and value of each person's autonomy, I always hesitate to impose my perspectives on someone else's life, but I must tell you that everything within me feels this quick decision of self-annihilation was wrong, just plain wrong at the time she made this irrevocable decision. For this exceptional, engaged woman to so abruptly withdraw herself (from her loving husband of so many years, from her beloved children and grandchildren, and all her many friends) all because she did not want to live as a pianist who could no longer play Chopin by heart seems a terrible tragedy. I wish (for both her sake and her family's) she had waited, waited a while - possibly a very long time - and thus made the positive life choice to continue sharing herself yet with the world and those who loved her.
John Lyons and his family (wife Jenny, in-laws George and Susan and the three young kids) came to River Road last year as John was struggling mightily with the malignant brain tumor which (sadly) took his life in just a matter of months. John (as those of you who were involved in his care through our Pastoral Care Teams and neighborhoods during those final months know full well) was a very strong-willed, clear and assertive individual, who knew precisely what he wanted, especially when it came to his illness. John wanted fiercely to live (and, if there was in the end no holding it back, die) on his own terms, and (with the help of an incredibly supportive family who shared his vision of personal control) was able to mobilize and organize resources around him to enable him to leave life on his own terms. John wanted to die at home, and thanks to his in-laws George and Susan who invited the whole family into their home that was possible. John wanted Jenny and the kids around him constantly...and they were. John wanted his extended family and wide network of friends and acquaintances (including a lot of people from this church) involved in the process the whole way, and every time I went into that house people were swirling in and out, keeping the house bright and bubbling with conversation, touch, sharing and caring. John wanted (and got!) a wide network of people around him, and when he finally died this Spring, hundreds of folks came (from all parts of the wide web he had cast) to fill his memorial service in this room. NBC news picked up on this remarkable story of doing death on your own terms, and told John and Jenny's story on both local and national television. Now, some people might have been uncomfortable with some aspects of the way John Lyons insisted to die on his own terms (like his and Jenny's decision to not shield their three young children from the harsh realities of this death), but I believe it was so very right, so very right in so many ways. John succeeded in dying on his own terms: in his own bed, surrounded by his wife and children (and so many more caring hands and hearts). It was right, blessedly, beautifully right, and I felt profoundly privileged just to be a small part of it.
This is a sermon about living and dying on your own terms. As must be obvious from these five true (and very different, yet related) stories I have just shared with you, I believe that living on your own terms as death draws near can (from situation to situation) be a terribly complicated business, which we (as religious people who take the precious gift of life with a profound seriousness) need to think about with considerable caution and care. There is nothing simple about living and dying on your own terms, and it behooves us, as Unitarian Universalists, to be as thoughtful (and principled) about our own decisions at the end of life as we can.
Let me begin my reflection with the obvious. Most people in this culture (including, need I point out independence-orientated, self-assertive, control-loving Unitarian Universalists) want the personal freedom to maximize their choices in life, especially (perhaps) when it comes to those difficult times when facing illness and medical crisis. There was a time in American life (not so long ago actually, so recent in fact that some remnants of the dysfunctional old paternalistic system persist to this day) when the medical and social system tended to dictate to ill individuals precisely how they were to go through the dying process, providing them with scant decision-making opportunities. In the "not-so-good-old-days" (as I shall call them) medical patients were supposed to essentially be quiescent and compliant, follow their physician's instructions and interventions, submitting to whatever standard hospital-based protocols of treatment their doctors thought best. This often meant that lives (which were clearly coming to a natural end) were prolonged by a patchwork of last-ditch, extraordinary medical procedures (respirators, IVs, heart-lung machines, feeding tubes and the like) that did not reverse the outcome, but merely postponed the inevitable, often trapping the passive patient in a long cycle of pointless suffering, prolonged pain, and meaningless physical survival. Many of you in this room right now could probably tell sad personal stories about this old "top down" medical model -- where in the final days of the life of someone you loved, their personal wishes, needs and desires were essentially ignored by medical people who weren't going to let the patient "die on them." Such patient disempowerment still occasionally happens, of course, but as the medical system in this culture has become more comfortable with death (as has the whole culture), and more sensitive to individual patient's wishes (largely in response to patients increasingly asserting their right to dictate the scope and course of their own treatment) more and more terminally ill people have been able to make choices about the care they will and (of equal importance) will not receive, and die more naturally on their own terms.
Generally speaking, of course, this new model of giving the terminal person as much choice and self-determination over their own care must be seen for the humane, compassionate and rational improvement that it is. Who here in this room does not want (even demand!) the FREEDOM, RESPECT AND AUTHORITY TO ACTIVELY PARTICIPATE in the course of their own medical care, including the right to decide when to cease certain extraordinary medical treatments when one has decided that the fight against a conquering illness has gone far enough? My stories about the final decision of my dear colleague dying of HIV/AIDS and John Lyons systematic insistence of determining how he would live and die with his brain tumor are testimonies to the moral rightness of this basic principle of self-determination as death draws near.
Because we all share this desire to have the greatest possible control over our own lives (even in our last days) it is terribly important for all of us to have clear medical directives in place before we become ill. Medical directives are things like living wills, medical power of attorney, advanced medical directives and organ donor cards - all helpful documents which will clearly communicate to our families and our physicians what we ourselves medically want (and who we want making decisions for us should we not be able to do that ourselves). Today, following this service, members of our Pastoral Care Teams will be staffing a table in the fellowship room, with information about and sample copies of such medical directives, along with a sign up sheet for our " Medical Directives Workshop" that Sylvia Friedman, Aiden Jones and others will be holding on Saturday November 18th (that's 13 days from now, a week from this coming Saturday) in the Fireside room from 10 a.m. to noon, to help you fully understand these forms and how to wisely fill them out. There is only one reason I can think of why you would not visit our table today, attend the workshop, talk extensively with your family about your desires, and fill out such forms (making copies for your family, your attorney, your doctor and your church, where we want to file them in case questions ever arise about what your desires were) and that reason is...DENIAL! Although we all know intellectually that someday we must die, most of us routinely keep the thought of our own personal death at emotional arm's length, imagining it (and the illness or trauma which will cause it) out of sight...far over our life's horizon somewhere. It is this nearly universal human form of distancing denial that permits us the avoidance and inaction which leads to us never quite getting around to putting our own personal wishes down on paper. When it comes to medical directives, my advice to you is simple...and the same as Nike's - NO MORE DENIAL AND AVOIDANCE...JUST DO IT...JUST DO IT! For your sake, and the sake of your loved ones, please visit our Pastoral Care Table today before you go home, and come to the workshop a week from Saturday, or one of the subsequent smaller group sessions which the Pastoral Care Teams will be offering!
Alright, so I have affirmed perhaps the first and most important ethical principle concerning our lives when we are seriously ill or facing death...we each have a right to substantially assert and express our own personal wishes as a human being, and to expect a great deal of decision-making authority over the direction of our own lives and medical treatment. BUT I BELIEVE WITH ALL MY HEART THAT TO AFFIRM THIS ALONE IS NOT ETHICALLY SUFFICIENT, NOT BY A LONG MILE! There is more here that commands respect than your own personal desires - there are other ethical imperatives, values and (yes) valid community considerations that must also command our moral attention and respect. That is why I earlier told the other three stories about: 1) Darren Marquardt's father (who rather miraculously recovered after being given up by most as a lost medical cause)...and about 2) my friend's request that I actively participate in the ending of his life (with a suffocating pillow or the like) if he so asks (even though I have told him my love for him would not emotionally permit me to ever do such a thing)...and about 3) Janet Adkins persuading Dr. Kevorkian to kill her when she was -personally disgusted and discouraged with her early Alzheimer's decline. None of us (I will morally assert) are (or should imagine ourselves as) truly autonomous creatures, nor should we ever demand ethically to be viewed as such. We all live in the context of community and connection with other persons, our immediate family and friendship circles first, and then ever expanding circles of human connection and societal responsibility...and that great and good truth - the truth of our human interconnectedness - places real and natural limits on our right to demand that we be given categorical control over what happens to us as death approaches. I do not believe, for example, that it is ethically right for every individual to insist they have the right to kill themselves (or even be euthanized by others) just because they feel (at 50 years old suffering from depression for 30 years...or at 87 suffering from cancer) that they are done with life. I am not saying it is always ethically wrong for someone to decide (out of their autonomy and individuality) that it is time for them to engineer the end of their life (no one can really stop someone who is passionately intent on killing themselves), but I am saying all of us have the moral responsibility to take into account how our lives (and how our deaths) will impact others - both those who love us and the society at large. I believe we (in this religious community, in our Unitarian Universalist tradition) must first and foremost be inclined to side with life. Yes, we value and believe in great measures of personal autonomy and freedom for every human individual, but that ethical assertion is always BALANCED AND LIMITED by the equally important affirmation of the value and usefulness of every human being in community, even as they decline in health, freedom and awareness. As Charlotte Perkins Gilman wrote toward the end of her long struggle with cancer, "A last duty. Human life consists in mutual service. No grief, no pain, no misfortune or 'broken heart' is excuse for cutting off one's life while any power of service [and I would add relationship]...any power of service or relationship remains." This is why I feel, frankly, it was morally wrong (or at least ethically short-sighted or selfish) of Janet Adkins to willfully leave her husband, children and grandchildren many months (perhaps several years) before the quality of her relational life (according to reasonable medical measure) would have declined (or disappeared below a meaningful interactive threshold) because she was disgusted that she could no longer master Chopin as she once had . This is also why I have said to my friend (who wanted me to promise that I would kill him on request), "No, you are too precious to me, my relationship with you is too sacred for me to ever willfully terminate it, I will come to be with you by the bedside, I will work with your doctors for pain management and comfort, but I will not assist in your suicide." And this is further why, reflecting on Darren dad's astounding recovery I will be ethically cautious when families ask me to participate in the decision to pull the plug, turn off a respirator, or disconnect a feeding tube - usually nature finds a way to rather quickly take its necessary course. This Unitarian Universalist ethically believes that if we are to err in one ethical, moral direction, please let it always be on the side of life, and the value each person - even very sick persons - continues to bring to family, community, and the wider world.
Now please do not mistake the emphasis or balance of what I am saying here. As I have already clearly affirmed, I believe the first and foremost ethical principle (for Unitarian Universalists, and hopefully increasingly for our culture at large) when we are considering how decisions will be made when any human individual is facing death is that individual's right to substantial control and maximum self-determination over the course of their care and treatment and life. But we must also carefully morally balance that principle of personal autonomy and individual freedom with the principle and value of our human connectedness in community, and our universal lifelong moral duty - as human beings -- to be of use, and in caring and responsive relationship with others who benefit from and are enriched by our living.
Well...it is time for this sermon to end...just (as surely) as it will someday be time for each of our individual lives to end as well. Let us then, in the final analysis this morning, say this. Here -- in this religious community which affirms the inherent worth and dignity of every person, and the immeasurable beauty of life itself-let us never waver from seeing every human life as a thing of profound preciousness (and, in curious companionship, incredible fragility). Our first instinct as religious and related people must always be to take the side of life and personhood. But as illness and death draw near (and the quality of someone's living evaporates or diminishes), sometimes, sometimes it is (finally) time for us to welcome, allow, permit, and even (in carefully controlled situations) hasten this departure from life. The hard part is that there are no simple formulas or trustworthy rules for making such hard and awkward life-and-death decisions. It is hard (sometimes downright impossible) to know just what to do, and to know just when to do it. None of these decisions are clean or neat, and we will sometimes make mistakes, but (in the end) there is no one else to make them, so we must make them as best we can. We must have faith that together (and sometimes all by ourselves), we can and will find the right and rational and responsible and loving way. First, we must find our way to life and living. As long as our days possess any purpose, productivity or possibility...any beauty, awareness or preciousness...we must side with life. And then, finally...for all of us eventually...when our time is truly come...and life's holy richness and reward is truly spent...we must wisely find our way to death...to that final curtain of enveloping serenity and silence...to the peace that must come.