“Who Gets to Decide When I Die?”
A Sermon for West Seattle UU Fellowship
Rev. Peg Boyle Morgan
April 27, 2008
Introduction:
Before I begin this sermon, let me say that any sermon about death is tender. I do not know if I will get through this without tears, and I want you to feel free to let any tears fall, should I touch a tender spot in you. After the service, I will gather with a circle of any of you who would like to share your thoughts and feelings about this topic, and we will be also joined by one of our congregation’s volunteer chaplains, Vera Markovitch, whose paid job is teaching chaplaincy at Swedish Hospital…..I’d also like to thank the non-profit organization Compassion & Choices for lending me several books for my research.
Sermon:
In the 2004 movie “The Sea Inside” a young man in his twenties in Spain dove off a rock into the ocean. He had taken that dive many a time, but this time he was distracted by a pretty woman and did not note the shallow tide…which caused him to hit bottom too soon, breaking his neck, causing him to become a quadriplegic with no use of his arms or hands….as the movie begins, we see him 28 years later… dependent upon his brother and sister-in-law, now that his mother had died. His character, played by Javier Bardem, is so different from the role Javier played this past year, as the powerful and evil killer in “No Country for Old Men.”
In “The Sea Inside”, he is struggling with having endured his paralysis for so long. He is a good man, creative, loving and honest, and a father substitute for his nephew—whose own father is dogmatic, angry and rigid. Javier Bardem has a rich fantasy life, and speaks of being able to close his eyes and enjoy images of the salty sea inside of himself.
He wants to die though, but he would need help to die, and that is illegal. A good looking woman attorney comes to help him petition the Barcelona high court to allow someone to help him die…She asks him, why do you want to die? He replied, “Life like this has no dignity. Besides, death is a part of life, why should we be afraid of it?” They develop a warm and loving relationship as they work together.
This issue of whether we have the legal right to help someone die is heating up in Washington State once more, with Initiative 1000 being in the signature gathering stage. The Death with Dignity initiative allows a physician to prescribe a prescription of lethal drugs.
This is a subject that touches me deeply. A friend of mine, some 15 years ago was diagnosed with lung cancer. She was older than me, around 60 at the time…she and her husband were part of an informal group of us Unitarian couples who enjoyed getting together for dinners and other activities ..and she and her husband had always had my boys over at Christmas time to make gingerbread houses—parents weren’t allowed to stay…just the kids. What good people they were…but then …after a short time, she was in the final stages of the disease. She thought a lot about how long and under what conditions she wanted to live. She didn’t want to live beyond the time that she could feed herself. She didn’t want to live to the time when her bodily functions were out of her control. She didn’t want to die after lingering in a morphine induced coma.
After counseling, family discussions and consent, and after putting her request in writing twice, a doctor agreed to provide her with the prescription drugs she would need to mix up into a shake which she could drink on her own power, and end her life. She waited a number of weeks before she felt it was time. Her friends had a chance to say goodbye, and her family gathered around. Her death came as expected, and though it was an extremely sad time for me, I am forever grateful that she was able to limit her suffering, and end her life on her own terms.
Because of this up close experience, I approach the new initiative with a bias in favor of it. However, to be more objective and informed I attended a debate recently to carefully listen to the arguments against it. The arguments for and against are fascinating, both because of the ideas about who is in charge of our lives, quality and dignity issues, and because of the moral implications The speaker against the initiative raised two major objections which were both fears of how the law could be abused.
1) The first is the fear that people with depression will get the prescription without having any mental health evaluation and treatment. The speaker thought all patients ought to have a mental health assessment. The rebuttal was that 85% of those using the Oregon law are on hospice which requires a regular depression assessment, and that requirements for a formal mental health assessment are not in place for other decisions which hasten the end of our lives, such as the decision to stop treatment or to stop drinking and eating.
2) The second argument against the initiative is that the rising health care costs will be a motivation for either family members or medical plans to pressure people to end their life to save money. He argued that in Oregon with its Death with Dignity law in effect, as health care costs have risen, so too have the deaths utilizing physician assisted suicide—those deaths tripling! The rebuttal was that this is more about correlation than causality, as we would expect an increase in people using the law as the law becomes more well known and accepted. In Oregon during the nine years of their Death With Dignity Act, 460 patients have requested and received life-ending prescriptions, written by 245 different physicians. Of those 460 people, 292 actually used the prescriptions and hastened their death.
Another strong voice against Death with Dignity comes from the disabled community. Many of the advocacy groups for disabled people share the speaker’s concerns, worrying that disabled people will be persuaded or coerced into hastening their own deaths. However, a 2003 study in Berkeley found that there is quite a divide within the disabled community when individuals are asked their opinions. There is a difference between the public persona of the advocacy groups and their members’ opinions…27% were supportive of assisted suicide legislation, 24 % opposed, and 49% were ambivalent. “However, ‘virtually all of the 45 respondents expressed a desire for autonomy in life’s choices and all but one respondent (based on religious beliefs) also expressed a desire to choose whether or not to end their lives if faced with a terminal disease or other significant life-changing situations.” Some in the disabled community are deeply affected by the Nazi practices of having physicians directly kill disabled people…
that history is deeply disturbing….
AND that history is just the opposite of what this initiative is about…for instead of the physician having the power to end life, this initiative puts the decision making power and the act of hastening death in the hands of the patient. But the truth is that this initiative would not serve the disabled in any special way. The man in the movie who was quadriplegic would not have been served by this law just because he wanted to end his emotional and spiritual suffering; he would have been ineligible because he is not terminally ill.
Certainly all of the concerns of potential abuses raised by those opposing this law are concerns that none of us would want to see happen. Therefore the process checks built into the law are all the more critical to avoid abuses.
A physician can only prescribe the pharmaceuticals under these conditions:
Those who are endorsing the initiative have very strong opinions about what words are used. They argue that we are not talking about suicide in the normal sense of the word…for people in the last weeks or months of their lives do not have the choice of living or dying…for living much longer is not realistically possible…they are only hastening their death. So the words that are more accurate to use are patient-directed dying or physician-assisted dying.
The subject and time of our deaths are such tender topics for so many emotional and spiritual reasons. There is the question of whether it is moral for a physician to assist a patient to hasten their death. If the job of a doctor is only to try to prolong life as long as possible regardless of the conditions and experience of the patient…then helping to hasten a patient’s death would not be appropriate….but is that the limit of a physician’s role? Do we not know so much more about health and medicine now to know that we want physician’s to accompany us as whole people—not just attending to our bodies, but to our whole selves, as emotional/spiritual people? And how moral is it to refuse to assist a patient who is physically, emotionally or spiritually suffering?
Some argue that there should not be any reason for physical suffering with the pain treatments we have now, but I must bow to the experts who have written that there are some patients for whom pain meds just don’t totally work. And, suffering is not just about physical pain….suffering is even more about our emotional and spiritual responses to what is happening to us. My father is an example of that.
My father had lived a very physical life until his 60’s—he was this delightful Irish humored guy who was the life of the party…he loved us all dearly, he loved going fishing and hunting with friends, and he felt great satisfaction as each wrecked car rolled out of his home auto body shop looking like new. Dad loved our mom, and was very thoughtful about how he wanted her to have a fully engaged life after he died. He encouraged her to go out and socialize and volunteer so that her life was not just focused on him. He thought he would die first, because he began having medical problems. Because of smoking all his life and breathing fumes from work in the auto body repair industry, he suffered severe breathing difficulties. By the time he turned 70, he was confined to the house, having great difficulty moving around … every step caused him to be out of breath, even as he was dragging his oxygen.
Dad had told us that he was ready to die…he clearly told us that his living did not have enough joy left, that it lacked pleasure and fullness, and that it was a matter of dignity. One day he was whisked off to the hospital, with severe chest pains—I got the call at my home in Seattle…your dad may have had a heart attack….I jumped in the car and drove to the hospital in Tacoma…by the time I got there…they knew it was not his heart, but his ribs fracturing, a side effect of years of taking prednisone to ease his breathing. The doctors at the hospital began a morphine treatment to control the pain…
After being transferred to an extended care facility…my mother and I had a subtle talk with his doctor… now Dad was close to his doctor…in fact his doctor was very fond of him…remembering the many years that Dad would come in with his scribbled list of issues to ask about, but always beginning with a little Irish joke….His doctor knew what he wanted…AND Dad now needed more morphine as more bones were fracturing…his pain was bad. I desperately wanted Dad’s suffering to end. His doctor was clear with us that at a certain point of raising the morphine levels, Dad’s body would shut down…death would be hastened. We all agreed, considering all the facts and lack of potential to get better. The doctor gave us a hug, turned in his order, and left us to companion Dad over his last estimated 2-3 days. That moment of decision making is still a clear memory—my body going into some kind of an emotional state that suspended the real pain of the impending loss of my Dad, and allowed me to remain in a care-giving mode.
This all happened in my first month of theological school, in October of 1995. I decided that even with 2-3 days, I would not go to class that night, and was able to reach Father James Eblen who was teaching Hebrew Scriptures. Father Eblen said he would began the class that evening with a prayer for our family. I settled into our vigil, still thinking we had a little time….but as mom and I sat on each side of Dad’s bed, holding his hands…my dad died that afternoon.
Hastening death through raising morphine levels happens all the time, but is legal because of the concept of double effect. The primary purpose, supposedly, is pain relief. The secondary effect is death. One of the arguments for this initiative is that some patients do not wish to have to wait until pain levels require more morphine, and they do not wish to linger in a morphine induced coma. Some of us wish to simply pre-empt those conditions by choosing the time and condition of our deaths. Another argument for the initiative is that it is legal for patients to make decisions like stopping treatment or stopping eating and drinking, all of which hasten death….but opponents argue those are about not doing something….and physician-assisted dying is actively doing something.
We might ask, how does taking any action towards hastening our death coincide with a sense of the sacredness of life? Many would say that the power to live or die should not be in human hands, but in God’s. What right do we have to do anything to end our lives—life being such a grand and mysterious gift? Many Christian people believe that we should not, though it is hard to understand then why Christian churches and clergy have endorsed killing of heretics, heathens, and enemies of religious and political wars. There seems to be some irrational inconsistency if humans can take the lives of others, and yet we do not have the moral right to hasten our own impending death.
Our lives and the length of them have long been out of the hands of “GOD” or out of the power of unimpeded natural processes, for humans have figured out how to cure and prolong life in a myriad of ways. That very ability has allowed us to live until we are older, and to expose ourselves to new kinds of suffering.
When people experience pain, shortness of breath, weakness, inability to walk or work, or talk when we experience smelling bad, loss of interest, diarrhea, and other undesired qualities, we—likely most of us…will respond to these conditions with our own unique and personal meanings…As we lose functions, as we no longer can socialize, we will interpret life in our own personal way…we will begin ruminating, reflecting on our lives, and if we are lucky we will have a spiritual advisor who will companion us during this time. We deserve and have a right to have any depression treated. But at the end of our lives, a certain amount of depression is normal as we begin to withdraw. Ultimately, even with good palliative hospice care, and mental and spiritual guidance and treatment, some of us will come to the clear conclusion that we really want to stop living.
Our experience of life is so very profoundly affected by the fact of our finiteness…as Bishop Shelby Spong said “Death is life’s shadow. It walks with us through the course of our days. We embrace death as a friend because we honor life. [he continues] I honor the God of life whom I serve by living fully. It does not honor God to cling to an existence that has become an empty shell.”
I want to live my life fully, making a difference in the world, enjoying life’s joys, loving and laughing and crying through the rest of my days.
And should the time come when I know that I am a short timer…, I want the legal right to peacefully, comfortably and quickly end my life—surrounded by my loved ones. Whether I choose to or not, I want the state out of my personal spiritual decision—the biggest most profound decision I may ever make….I want other people’s religious values to not control my choices….
As humanity evolves, perhaps we can consider the words of James Russell Lowell, a Unitarian from the 19th century who wrote these words in our hymn # 119—Once to every soul and nation comes the moment to decide….
I hope we in Washington State decide to give ourselves the option…because living, while a right, should not be an obligation…. each person should have that authority for themselves.
May it be so. Amen.
References:
A Gentle Death by Marilynne Sequin, RN
Patient Directed Dying by Tom Preston, MD
Physician Assisted Dying by Timothy Quill, MD
To Die Well by Sidney Wanzer, MD
A Time to Die by Charles McKahnn, MD
The Good Death by Marilyn Webb