"Dying To Talk"

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Pulpit Guest, The Rev. Matthew Nelson
Board Member, Compassion and Choices
May 28, 2006

Compassion and Choices (C&C) is a national nonprofit organization working to improve care and expand choice at the end of life, which helps patients and their loved ones face the end of life with calm facts and choices of action. C&C also pursues legal reform to promote pain care, to put teeth in advance directives and to legalize physician aid in dying.

It is a pleasure to share worship with you this morning and share some thoughts about end of life choices. I am on the national board of Compassion & Choices and am an ordained minister in the United Church of Christ. I trust that all of you know what the UCC stands for…Unitarians Considering Christ. You laugh but it is true. My home church, First Congregational Church of Minnesota, during a discussion of our revised mission statement had a long discussion about whether Christ should be included in our mission statement. Christ ended up in the mission statement.

I’ve structured this sermon in three-parts to talk about each of the areas that Compassion & Choices provides – Support, Education and Advocacy.

At 1 in the morning on September 15, 1997, nearly 9 years ago, my father’s heart stopped. He was resuscitated but was in a coma. I flew to Minnesota immediately. Went directly to the hospital and greeted my father as I always did, “Hi Daddy, Hi Daddy, I’m home, I’m home.” And he would always answer, “Hi Matty, Hi Matty, you’re home, you’re home.” He was silent this time. No Hi Matty, hi Matty, you’re home, you’re home. But a tear slipped from his unfocused eye. I like to think he knew I was home, to say good-bye.

My father had advanced health care directives. He had told us clearly, do not keep me alive artificially when my time has come. I had two warnings when his time had come. His health had long been declining. He suffered from Chronic Obstructive Pulmonary Disease. His lungs were shutting down. The first warning was when he went on oxygen 24/7. He said to me, now I can’t even grill hamburgers. His last traditional role in the family was gone. The other warning was when I asked him if he was afraid to die. He very calmly and easily said, no, he wasn’t afraid. So in many ways it was not a hard decision to make to take all life-support systems off of my dad. We as a family all agreed. But it is always hard to make that decision.

Then came the waiting, the vigil by his bed. The first day was horrible. He was restless. He didn’t look himself. The nurses stopped coming by. I began to wonder if we had made the right decision. Was he suffering? Was he now struggling to stay alive? By afternoon he looked totally disheveled, and I panicked a little.

Then the nursing staff shift changed, the evening nurses came in and bathed my dad, shaved his face, freshened up his pillow and bed. And he was my dad again, peaceful and comfortable.

My mother and father were very affectionate, even after 50 plus years. Before every meal that my mother set before my dad, he would give her a kiss and say, “Praise the cook.” As he became sicker and needed to take more medication it was not just at meal time that the affectionate kiss happened but every time he had to take his medication.

On Thursday, two days after all life support had been taken away, my dad’s breathing had gotten very shallow. We had his favorite cassette tape on, classical music with loons calling in the background. As Wisconsinites you can understand why he loved it so. We were all gathered around his bed, saying good-byes and encouraging him to take the step to the other side. About 7 p.m. that night his eyes opened clearly. My mother was by his side and leaned over to speak to him. He smiled and gave her one of those classic kisses. And that was the end of a beautiful life.

C&C offers support to any individual who asks for support at the end of their life. Had C&C been brought in when my father was dying and had the state of Minnesota had a Death with Dignity Act like Oregon; that day of panic, when I felt that my father was abandoned by the nursing staff, left to die unshaven and restless; might not have happened. Because of Oregon’s Death with Dignity Act, end of life care and pain management has increased dramatically in that state. The citizens of Oregon had talked about end of life, and the health care systems caught up to that conversation to provide the best possible care. Every state in this country should have that level of care and every individual should know and have access to end of life choices.

In Wisconsin there are more than 400 members of the C&C chapter. One of those people is a trained client support volunteer. Only one. What can you do? There is literature available for you to pick up after worship on how to become a member of the local chapter and thus a part of the national organization. (more at www.compassionandchoices.org) But also consider being a trained client support person. This is one of the most powerful and deeply moving roles you can play. How do I know? Because I love to do funerals. Let me explain.

Doris French was a tiny, slight old woman. Chipper and pleasant. She had one of those little lap dogs with the incredibly high pitched bark, and a little bit hyper active, the dog. She lived off a dirt road, in a small canyon, in Eastern Oregon ranch land, in a small old trailer, that still had its wheels on it. She was married to a big, gruff and tough ranch hand. He was at least a foot or a foot and a half taller than Doris. They were a most unlikely couple.

When I did Doris’ funeral I wasn’t sure what to expect from her husband. When I went out to that trailer, climbed the wobbly metal steps and ducked my head into the trailer, there he was gently holding Doris’ lap dog. I found how deeply he loved her, what a strong faith they shared and how much he missed her really strong coffee. I’m not sure how many people knew of their relationships, their love or their faith, because we really don’t talk about those things while we are living. And yet I think people are literally dying to talk about it.

The second service C&C provides is education, so that people don’t have to die to talk about what is most important. C&C educates the general public and health care professionals to understand end of life choices. One of the tools we use is health care advanced directives.

How many of you have health care advanced directives, sometimes called living wills? Only one third of the US population has advanced directives. My father had advanced directives and he told us he did. He told us his wishes. It is not enough to have the piece of paper. You have to have the conversation too because that is what it makes it real to family and friends. My dream is that our society can talk about death and about life, quality of life, what we most deeply appreciate about this world and the loved ones around us. My dream is that we know our end of life choices and that we have those choices. Don’t wait to have those conversations. Don’t wait until it is too late. What can you do? Fill out advanced directives and have the conversation, as awkward as it is, have it. I have told my partner that today would be a good day to die. I believe that the world is a little bit better because I have walked on it. I have been loved deeply and have deeply loved. Today would be a good day to die. And don’t forget to sing “In the Garden” at my memorial service. I know it is kind of an old tent revival song, but it comforts me.

The last area that C&C provides expertise is in advocacy.

On January 17th of this year, I happened to be in Washington DC. That is the day that the US Supreme Court upheld the Oregon Death with Dignity Act. I walked down to the Supreme Court that day and picked up my piece of history, the opinion on Oregon’s Death with Dignity Act.

As powerful as our Client Support work is, and as important as our education work is, I believe our advocacy work has, does and will have the greatest impact. I mentioned to you that Oregon has the best end of life care in the nation. Why, because of advocacy. Why because Oregonians had to have the conversation. They had to think about it, read about it and vote on it. Not once but twice – passing both times.

Did you know that according to a Harris Poll from a year ago, 70 percent of adults surveyed are in favor of a law that would “allow doctors to comply with the wishes of a dying patient in severe distress who asks to have his or her life ended.” And 67% would like their states to allow Oregon-style aid in dying for terminally ill patients.

What can you do? I think you should keep singing hymn #306 “sing of living, sing of dying….and search for higher justice.” I believe that a higher justice is a constitutional right to die. Write letters to your state and federal representatives. Give money. And sing, and dance.

This is what C&C does – provides client support, education to the general public and health care professionals, and advocates for laws to assure every person has end of life choices. But what about we us as people of faith?

Twenty years ago, I was chaplain at Abbott Northwestern Hospital, in Minneapolis. I was watching an autopsy of a man my own age. It made me wonder how I am different from him. What makes him dead and me alive? What kept me breathing? What makes me tick? I believe it is that Old Testament understanding of the spirit of God, the breath of God, Ruah. That each of us is imbued with the Ruah, the breath of God, the spirit. Or as Saint Francis of Assisi wrote: brother sleep, and sister death who tend the borders of our breath. If it is Ruah that keeps us going, what about when we die? If you thought you would get an answer this morning, you are wrong. What I do know is that I trust and believe it will be okay. I have faith. Today would be a good day to die.

What I don’t understand is how many “people of faith” are opposed to death with dignity, instead it is: preserve life at all cost, regardless of the pain or suffering, and with total disregard to the quality of life. That is not faith. That is fear. Fear of the past, fear of what is next after death, fear that what they believe is not true. I believe in a loving God and love casts out all fear. You are people of faith, who breathe the breath of God each day, who live boldly, who love boldly and who I hope will die boldly. C&C will be there to support you, to educate you, and advocate for you. May it be true.

BENEDICTION

Just as long as we have breath, we must answer yes to life, yes to truth, yes to love.

Go forth this day, “…held elegantly still in dance position, then waltz away, glancing over your shoulder once, and with the smallest gesture, let them know how much, you like to dance.”