Exploring the Choice to Die

Sermon by Rev. Alan Taylor
Preached at Unity Temple Unitarian Universalist Congregation
April 24, 2005

First Reading:
from The Tibetan Book of Living and Dying by Sogyal Rinpoche

The Buddha said, "This existence of ours is as transient as autumn clouds.
To watch the birth and death of beings is like looking at the movements of a dance.
A lifetime is like a flash of lightning in the sky,
Rushing by, like a torrent down a steep mountain."

Death is a mirror in which the entire meaning of life is reflected. …Whatever we have done with our lives makes us what we are when we die. And everything, absolutely everything, counts.

Second Reading:
from “Watching 'Million Dollar Baby' from My Wheelchair” by Diane Coleman

Diane Coleman is the executive director of Progress Center for Independent Living in Forest Park. She is also the founder and director of the grassroots disability movement called Not Dead Yet. It is from www.notdeadyet.org that the following reading comes.

Many people have told me that they don't think they could "stand to live" if they needed a wheelchair like me. That's why I felt a little queasy about going to see Million Dollar Baby. But helping plan the first disability protest of the movie, in Chicago, I had a duty to see it.

I thought I was emotionally well-prepared. I already knew many details about the last half hour - the injury, hospital, nursing home, and killing scenes - from disabled colleagues. But my preparation was more than that. When I grew up, through braces and surgeries, my elementary school teachers called me "Mary Sunshine". When I completed UCLA law school from a motorized wheelchair, I was called "inspirational". I took it as the highest compliment to be told by some non-disabled person that they "didn't think of" me as "handicapped". When I was excluded or rejected in my work or social life, I could always understand the other's perspective. Even the few times someone would actually say they would rather be dead than be like me, I would just politely forge on.

As I watched, I thought about the impact the movie would have on severely disabled people surrounded only by doctors, nurses, and mixed up, grieving family and friends. Swept along in the emotion, could any audience member imagine a happy and meaningful life for Maggie as a quad? For him or herself as a quad?

It took me another week to get in touch with my deeper personal discomfort. Could people imagine a happy and meaningful life for me? Could they see that I am not living a fate worse than death?

I've always felt a tension between how others see me and how I see myself. By now, that tension, and my coping mechanisms, are way below the surface. Denial, the fantasy of acceptance, I have used whatever I could to endure and manage over 50 years of those looks, and looks away, to be who I am out in the world everyday. But now I am forced to see how critics and audiences love this movie, resent our anger, and extol the virtues of open public discussion of euthanasia based on disability. My fantasy is ripped away.

If I'd been truly prepared, I'd have brought a sign to hold up, saying, "I Am Not Better Off Dead." I would have looked into every face exiting the theater, insisting that they see me, and this simple yet apparently incomprehensible message.

 

Sermon:

 

This morning, I want to explore issues that have do with our choices when facing death and dying. This sermon is inspired by individuals who have asked me the following questions: When is it appropriate to take a loved one off a life support system? If I take my life or ask someone to euthanize me, will there be any harm done to my soul? Is there anything I should be aware of if I consider ending my life should living become too burdensome and miserable to endure? If I choose to end my life, will you, as my minister, support my decision and, if I request, be with me when I die?

When is it appropriate to take a person off life support? Forty years ago using a respirator machine to keep a dying patient alive was considered “playing God”. Yet today many folks feel guilty of doing just that when taking patients off of “life support” systems. Medical technology has made it possible to extend life far past what would have been considered normal a generation ago. It has also made possible the extension of life for many vibrant, thoughtful disabled people. For some people, respirators provide the needed apparatus to live, thrive, and have a productive life. For others, respirators are terrifying symbols of dependency. So when is it appropriate to take a person off life support? It depends in large part on what the individual wants.

A true story. My colleague Davison Loehr writes of a parishioner: “He was a retired Classics professor, about 85, and his name was Victor. Victor was a very opinionated man, without a lot of doubts about what he wanted. And, when he was admitted to the hospital dying of several things – though mostly, as he told me, of old age – he filled out his patient’s rights form immediately, making it clear that he wanted no heroic measures, and did not want to be resuscitated. But the word didn’t get passed to the night shift. So when Victor went into cardiac arrest in the middle of the night, they called in the team that put the electric paddles on his chest and gave him a terrific jolt of electricity to jump-start his heart, which it did. Victor’s eyes opened wide, he looked straight at the man who had held the paddles, and said very sternly, 'Don’t do that again!' They didn’t, and those were his last words: he died a few minutes later.”   

As for the choice to take oneself off life support or refuse life saving measures, I appreciate what Kalu Rinpoche says, quoted in The Tibetan Book of Living and Dying:

"The person who decides that they have had enough suffering and wishes to be allowed to die is in a situation that we cannot call virtuous or non-virtuous. We certainly cannot blame someone for making that decision. It is not a karmically negative act. It is simply the wish to avoid suffering, which is the fundamental wish of all living beings. On the other hand, it is not a particularly virtuous act, either.… Rather than being a wish to end one’s life, it’s a wish to end suffering."

According to the Tibetan teacher, suicide, on the other hand, does harm the soul, but it is not a venial sin as in Catholicism. Regarding the dilemma over whether to follow someone else’s wishes and remove them from life support, Kalu Rinpoche says it depends upon the intention and state of mind of the healer who does so. In our health care system, the decision to be put on life support is ultimately in the hands of the medical establishment which is becoming ever more profit-driven. Given this, the question is much more difficult to answer in the absence of an advanced directive. 

In The New York Times, Dr. Sandeep Jauhar wrote an article about a man in his mid-50s who had a heart attack and developed complications. He was of sound mind and had told the medical staff that he was not, under any conditions, to be intubated – that is to have a plastic oxygen tube put down into his lungs. When he developed a condition where he had to be intubated or would die, still, he refused, but the medical staff overpowered him and put that oxygen tube into his lungs. After he finally stabilized, the tube was removed and he was on the road to recovery. Then the doctor visited him, the doctor who had ordered the patient’s wishes overruled, and told him he was the one who had ordered the patient held down so the oxygen tube could be put in to save his life. The patient said, “I know.” Then he added “Thank you.” This individual came to have a much different perspective about a simple plastic tube that made the difference for him between living and dying.

Have you ever thought about how you would like to die? Would you welcome the assistance of a plastic tube or other measures? Would you want to determine the time and the place of your death? This may seem an odd question to pose within our culture as youth-saturated as it is, but given that our culture now provides choices for all aspect of our lives, why not also about the final curtain call of our days? If suddenly we find ourselves requiring tubes to keep us alive, should we have the choice to do away with life support when it means we will die? When our bodies begin to deteriorate, when it appears there is little left for us to do, and when we no longer can attend to our basic functions such as feeding ourselves, using the toilet, should we have the choice to off ourselves? Or is life a sacred gift to be preserved at all costs, not to be ended at will, but instead allowed to take its course?

The most controversial issue around death and dying is euthanasia. I feel extremely uncomfortable just saying the word. Euthanasia. When I say or hear it, I have images of a needle about to be injected, meant for the stilling of the body. It is such a grim image, I have difficulty staying with it. Today, many people in our religious movement talk about death with dignity. That’s a far more mollifying phrase, but what exactly does it mean? When struggling through all the issues, I find that my perspective doesn’t neatly fall into a category of liberal or conservative.

Unitarian Universalist minister Ralph Mero is the most visible advocate for physician assisted suicide in our movement. He is the former director of Compassion in Dying and now on staff of the UUA. He writes, “After watching her father struggle painfully against cancer before he died, a woman once asked me, 'Why is it that decent people have to die in a manner more degrading than our pets?' The process of dying seems to take longer these days. It has become vastly more expensive and is too often marked by prolonged suffering and loss of personal dignity. Many people worry that they will have little control over what happens to them as they become hopelessly ill. Others fear that strangers will take over the final decisions of their lives.”

Mero continues, “I have seen people contemplating the end of their life. I have listened as they made plans to hasten their death so they could keep some essential dignity. I have watched as dying patients took the medication they needed for that final sleep, and I have prayed with their families as the flame of life flickered faintly and faded away. In recent decades the process of dying has emerged as a serious religious and societal concern. Because of modern medicine and the influences of secular culture, religious people are starting to re-examine their assumptions about how life ends. Instead of heaven or hell, today's discussions about death focus on the withdrawal of life supports, assisted suicide, and active euthanasia. People who have watched a parent or partner slip into an irreversible coma, lose control of basic bodily functions, or suffer from advanced Alzheimer's disease or other forms of dementia, often say, ‘I don't want to go through what Mom did, and I wouldn't want my children to see me suffer like that.’”

In 1988, the Unitarian Universalist Association became the first denomination in North America to explicitly support what is called “the right to die with dignity”. The Unitarian Universalist Association General Assembly resolved that all people have "the right to self-determination in dying with release from civil or criminal penalties of those who, under proper safeguards, act to honor the right of terminally ill patients to select the time of their own deaths". Not all Unitarian Universalists endorse this position. I personally struggle with the legalizing of physician assisted suicide and active euthanasia.

I am curious, how many people here have seen the movie "Million Dollar Baby"? This film, directed by Clint Eastwood, swept the Academy Awards this year including the award for Best Picture. It is a moving tale of a woman boxer who devotes her life to boxing and accomplishes her dreams, but a freak accident leaves her paralyzed from the neck down. Earlier in the film she talked about how tough it was for her family to put down their dog when the dog was too weak to continue living but that it was necessary to do so. At the end of the film, she is unable to move most of her body and she cannot imagine any kind of future because boxing was her life, and so she pleads with her trainer to put her out of her misery. He does so.

I left the movie theatre feeling morally hollow inside. Although I did feel that if I were Maggie, I too wouldn’t want to live, there was something not quite right about comparing the mercy killing of a dying dog with that of a young woman even though she begged for it. I empathize with the outrage of people with disabilities over Clint Eastwood’s film and the accolades it received from the Hollywood community. There was no exploration or even mention in "Million Dollar Baby" of the possibility of  life as a quadriplegic. Instead only the assumption that life could not possibly be worth living in a physically disabled state. Diane Coleman, founder of Not Dead Yet, points out “Most people realize that they have a good chance of becoming terminally ill before their life is over. But many don't realize that they have an almost equal likelihood of passing through stages of chronic illness and disability before they are 'terminal'. In fact, although intractable pain has been sold as the primary reason for enacting assisted suicide laws, the reasons doctors actually report for issuing lethal prescriptions are the patient's ‘loss of autonomy’ and ‘feelings of being a burden’.”

Our culture has an aversion to dealing with living with a profound disability and with the dependence that comes with it. Indeed, we here at Unity Temple have an architecture that buys into and reinforces that aversion. It is no mere coincidence that we have very few disabled people among us, even though an estimated 20 percent of the national population has some form of disability. Back in Woodinville, I had two children and three adults a part of the congregation who, if they were members here, would not be able to participate except for peering in from the cloisters. For me as minister here, there is nothing more embarrassing than to officiate a wedding, a child dedication, or a memorial service where loved ones who are in wheelchairs cannot fully participate because there is no access to the main floor of the sanctuary. It shall break my heart each time a member here becomes wheelchair bound and unable to come to the microphone to share a joy or sorrow. It appears to me to be a moral imperative that we provide wheelchair accessibility to our temple’s main level, but that is another sermon for another time.

What I want you to consider today is that for every human being, no matter how debilitated one’s body becomes or how dependent one becomes on others, as long as there is consciousness, the religious response is not pity but compassion. I urge you to consider other ways than euthanasia to approach patients who are in pain or demoralized by what their lives have become. There are cultural understandings of the self that need to be challenged and confronted. The option to terminate one’s life at will is not the only way of dealing with the loss of autonomy or feeling like a burden.

My cousin in Iowa is as much a fan of Clint Eastwood’s films, especially the Dirty Harry movies, as anyone I know. Four years ago, he became a quadriplegic following a freak accident while stringing Christmas lights from his roof. At first, he wished he had died then and there, but now he is grateful his life hadn’t ended that awful day when he broke his neck. Had he that option then, he very well may have taken it.

As for the Terri Schiavo case, I personally felt that justice was finally done in her case, but I find it striking that 26 organizations representing disabled people opposed removing Terri Schiavo’s feeding tube. Their reasons had nothing to do with the opportunistic right-wing religious fanaticism that made Schiavo into the poster girl for the religious right. Instead folks like Laura Hershey and Diane Coleman noted that Terri Schiavo’s guardian didn’t ever fix her wheelchair when it broke many years ago, that he denied her dental treatment as her teeth fell out, and when she demonstrated the ability to swallow, he blocked giving her swallowing therapy. To put it bluntly, many disabled people saw Terri Schiavo as one of their own, and they don’t want to live in a society that makes it easier to get rid of them.

If physician assisted suicide became an option among the menu from which patients could choose, the implicit notion that life is expendable will likely influence the attitudes of the medical community, of patients, and the public at large. In a health care system that worries about the bottom line, those who are expensive will naturally be urged to opt out of treatment, just as there is pressure on disabled people to forgo curative treatments. Disabled people have plenty of experiences that make them skeptical of doctors' opinions. Laura Hershey, a disabled lesbian feminist, wrote in "The Nation", “I know several dynamic individuals who were once written off by doctors as terminal, vegetative, or otherwise hopeless. Some would be dead today if not for the efforts of someone who believed in their right to live.” Hershey explains that as a woman with significant physical disabilities, her last hospitalization had three different staff people assume that her chart must have a do-not-resuscitate order. Ever since she has written "Do resuscitate!" on every medical form that's comes her way.

The desire to end one’s life because it seems undignified to be dependent upon others to bathe, use the bathroom, or, in some cases, even eat, appears utterly foreign, if not insulting, to people living with disabilities. As the disability community has learned firsthand about those who become severely disabled, people are amazing, and they do find their way. As Diane Coleman told me,  “You would not believe how many people who have suddenly become wheelchair bound have told me that after a time their lives have gotten better than before.” For some strange reason, when limits are placed on our lives, there is a clearer opportunity how to live a meaningful, dignified life. And all sorts of limits get placed on our lives. Physical disability is just one. Becoming the parent of a disabled child is another. A former parishioner is the mother of twin boys who are severely disabled. Life for her the past twelve years has been utterly exhausting as she has fought for adequate health care for them, adequate nursing care in the home, and then adequate education in the schools. In the meantime she has become an activist for people with disabilities as well as a support to other parents who are in a similar situation. Her life has taken on more meaning than she could have ever dreamed. But that isn’t to say it’s easy. It’s not. And sometimes the limitations that threaten to bear down on our lives are more than we can fathom.

A newer member of our community shared with me that her father died a week and a half ago after an unexpected heart attack. He had specifically requested no artificial life support because he was one that simply could not fathom living if he didn’t have full control over his body or if he was dependent upon others. His life would have easily been maintained, but he got his wish. Another member of our congregation has told me that she hopes that when she is unable to care for herself that she will be treated as humanely as she has treated her cats, protecting them from unnecessary misery. 

There is no question where the Catholic tradition comes down on the question of euthanasia. As Cardinal Ratzinger, now Pope, made clear in 1998: The sin of euthanasia is one of the “definitive” truths that all Catholics must hold. Any rejection of this specific church teaching would be subject to penalties ranging from a warning to excommunication. This stance is ultimately unhelpful in the debate about euthanasia. When it comes down to it, I am ambivalent. In keeping with centuries of Unitarian Universalist commitment to religious freedom and individual conscience, I believe we should honor what helps dying people face their final days and weeks with confidence, dignity, and hope. Would I support you if you chose to end your life? As your minister, I support whatever decision you make to face your last days with dignity and to be with you and your family at the end. And that support includes sharing with you the significant perspective that people with disabilities have and the invitation to reframe your perspective, to understand that disability is not the end of the world, that the loss of autonomy does nothing to take away from who you are as a person, and that life still has gifts to offer, including that of your own to be a blessing to others.

Whether or not we are of an age or health to explore how we might die, each and every one of us can make decisions about our end of life care by filling out a living will. I urge each of you to get the forms from an attorney. File them with your doctors. And just to be safe, give them to someone you trust. I as your minister will gladly keep a copy of your living will on file in my office, along with any wishes you have for your memorial service.

Blessed be. Amen. 

© Copyright 2005 Rev. Alan Taylor, All Rights Reserved.