Praise for
Compassion in Dying: Stories of Dignity and Choice

What is striking is how much joy and love there are in these stories. There is proof here, in the voices of these brave and eloquent people, that dying can be a choice—and a good one.

— Betty Rollin, author, Last Wish

The heart and soul of Compassion's mission has been to support patients and families facing difficult decisions about choice at the end-of-life. This is an important book for skilled caregivers.

— Timothy E. Quill, M.D., author, A Midwife through the Dying Process

Thanks to the foresight of Barbara Coombs Lee, the moving family dramas told in this book were able to occur. A must read for those rare stories of deaths gone well!

— Marilyn Webb, author, The Good Death: A New American Search to Reshape the End of Life

More Praise for
Compassion in Dying: Stories of Dignity and Choice

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These rich stories reveal the complexities of end-of-life issues and the human need to affirm deeply held values. By sharing these stories we hope to help others confronting similar situations and help society understand how the issues of a debate play out in the lives of people who might be their neighbors, their friends, their role models.

—Barbara Coombs Lee, Editor
President, Compassion in Dying Federation

Primarily, the stories in Compassion in Dying are from Oregonians who sought the choice to use the Death with Dignity Act—whether or not they chose to end their life with the prescribed medication. Interestingly, most people who obtain the necessary medication to hasten their death do not ultimately use it, but rather experience profound peace of mind knowing they have an option to escape intolerable suffering. The Oregon experience with assisted dying shows that when patients are empowered by choice and control in how they die, they experience renewed hope and courage.

Death with Dignity, Palliative Care, and Pain Care Advocacy are topics that generate vigorous national dialogue. The problems of dying persist: too many people still die in agony, and too many people still endure prolonged dying and needless suffering against their will. The medical/pharmaceutical behemoth too often treats not patients, but diseases and statistics. Physicians and medical technology often deny death its natural course. The result can be a patient stripped of personal autonomy and choice and loved ones left behind to deal with sorrow, guilt, and anger.

Dying has become dominated by technology and medical institutions. Thus it may come as a surprise that individual choice can play a major role at the end of life. It is well established that physicians frequently fail to provide adequate pain care to patients suffering at the end of life. A study published in the Journal of American Medical Association (JAMA) found that over 50 percent of all dying patients had moderate to severe pain. At the same time it is well established that only perhaps 10 percent of dying patients have conditions in which alleviation of pain is truly difficult or impossible.

At present, the Bush Administration threatens Oregon’s aid-in-dying law with an action spearheaded by Attorney General John Ashcroft. Also, many in the medical community and caregiving community argue that any medication to hasten death, even by a few hours, is unacceptable. But as the stories in Compassion in Dying reflect, the act of dying and the choices made in this final chapter of life move beyond political partisanship, religious beliefs, and societal acceptability into a realm of personal choice influenced by dignity. Over the course of a terminal illness, many decisions will be made. The stories in this book reveal some of those personal and profound choices made by terminally ill people often in conjunction with their family members as advocates.

Oregon’s law has been in place since 1994 and during that time Oregon citizens have used the law sparingly. The many safeguards and guidelines established by the state have allowed its implementation without complications. As a result, Oregon has become a national model for the end-of-life care. Compassion in Dying provides a personal perspective with an honesty that cuts through the often controversial and highly politicized topic of end-of-life choices.

Barbara Coombs Lee is President of Compassion in Dying Federation, a nonprofit organization dedicated to expanding and protecting the rights of the terminally ill. She practiced as a nurse and physician assistant for twenty-five years before beginning a career in law and health policy. Since then she has devoted her professional life to individual choice and empowerment in health care.

As an attorney Coombs Lee has served as counsel to the Oregon State Senate, worked as a managed care executive, and most recently, she was the Chief Petitioner for Oregon’s Death with Dignity Act. Throughout her medical and legal careers, Coombs Lee has championed initiatives that enable individuals to consider a full range of choices and be full participants in their health care decisions.

Since Oregon v. Ashcroft, Compassion’s lawsuit defending the terminally ill, Coombs Lee has been interviewed by many of the nations newspapers, including the New York Times, The Washington Post, The Chicago Tribune, and on NPR’s All Things Considered. Coombs Lee has been interviewed by NBC News, CNN Crossfire, 60 Minutes, McNeil Lehrer News Hour, NPR, The Today Show, and Bill Moyers’ “On Death and Dying” among others. She has also testified before the U.S. Congress on end-of-life issues. Recently, The Harvey M. Meyerhoff Lectures on Ethics at the End of Life hosted her presentation “Local Medical Practice and the Federal Threat” at Johns Hopkins University.

Barbara Coombs Lee completed her undergraduate education at Vassar College and Cornell University and obtained advanced degrees in law and medicine from the University of Washington and Lewis & Clark College. She holds an adjunct position at the University of Washington School of Public Health and Preventative Medicine and is a member of the Oregon State Bar.

Barbara Coombs Lee has been recognized with a national health Policy Fellowship, Boeringer Ingeheim Foundation, an American Jurisprudence Award for outstanding performance in the study of medical law and a National Health Lawyers Association scholarship for outstanding student achievement. She has been a presenter at programs sponsored by American Bar Association, Older Women’s League, American Pain Society, Oregon State Bar, Americans for Better Care of The Dying, American Associations for the Advancement of Science, End of Life Concerns, and the American Pain Society. She spoke at the World Federation Right to Die conference in Zurich, Boston and Brussels.

Her audiences have included the Oregon Gerontological Association: the California Nurse Assembly & Education Conference. Her debate “Doctor Assisted Suicide: Compassionate Alternative or Murder” with James Bopp, Jr., was produced by “Justice Talking” a project of the University of Pennsylvania’s Annenberg Public Policy Center for Public Radio.

For more information contact: WWW.COMPASSIONINDYING.COM

The following is excerpted from Compassion in Dying: Stories of Dignity and Choice (NewSage Press 2003). This material is copyrighted by Barbara Coombs Lee and NewSage Press, and may not be copied or excerpted without direct permission from the publisher.

CHAPTER ONE

Margaret “Peggy” Haas Sutherland

Margaret Haas Sutherland—Peggy—was an independent thinker. A graduate of Mount Holyoke College in philosophy and psychology, she was considered smart and strong-willed. She also placed a high value on self-sufficiency and encouraged this in her five children. Those who knew Peggy say she was tolerant, accepting, encouraging, and enthusiastic. She questioned authority, and she believed people can do anything they set their minds to.

Peggy instilled a love of music in her family and she loved to dance. She played the piano and especially enjoyed classical music and opera, but her tastes encompassed jazz, gospel hymns, Harry Belafonte, and the Irish Rovers.

Peggy was born in White Plains, New York in 1932, and moved with her family to Pennsylvania when she was six years old. After college she married Donald Sutherland, a physician, and they had four girls and a boy. The family moved to Oregon in 1961 and Peggy immersed herself in community activity in addition to caring for her growing family. Peggy was active on the boards of the Portland Chamber Orchestra, Chamber Music Northwest, and the Colonial Dames of America. She was a founding member of the Oregon Psychoanalytic Association and a volunteer at Hopewell House, a Portland hospice.

In January 2000 at age 67, Peggy found out she had lung cancer. Nearly one year later, after two surgeries and intensive cancer treatment, Peggy knew she was approaching death. One of her lungs was removed and the cancer had eaten away a rib. Peggy was coughing up blood, and the pain grew more intense despite strong medication. She decided the time had come to determine when she would die. For this, she turned to Compassion in Dying.

As required by Oregon’s Death with Dignity Act, Peggy made two requests for medication to end her life. She obtained statements from several physicians that she was mentally capable of this decision and able to swallow on her own. Peggy was prepared.

Throughout Peggy’s process of choosing physician assisted dying, her family was involved, learning everything they could and talking with their mother. Peggy’s children supported her wish to control her own death, but one of her children who is a physician realized that she would not be willing to prescribe medications for assisted dying to her own patients. However, she did acknowledge and respect her mother’s personal decision to end her life.

Peggy Sutherland ingested the prescribed medicaton on January 25, 2000. She was surrounded by family and friends, at peace in her own home, looking out the window at the Willamette River as it meandered through Portland. The following stories are by four of Peggy’s children and one grandchild.

Julie McMurchie

Daughter, homemaker, and mother of three children

My mother was so clear. It wasn’t a process of us deciding, it was her decision. It wasn’t our choice to make. She was a competent, intelligent woman. It was not for me to tell her what to do. Besides, I supported her. I never once felt that I shouldn’t help her to do this; I don’t think any of my siblings did either. I remember a few conversations with my siblings who are doctors, Dick and Kathy, about the Hippocratic Oath. I remember them saying, “This is something I always assumed I would not do.” But it was a complication, never a conflict. Nobody argued that we should not do this. It’s not that we are a no-conflict family, but on this, it was Mom’s decision and we all respected that. For God’s sake, the woman had just been through hell for a year. How could we tell her she had no burdens? It was obvious to me.

I get so upset when I hear people say, “All you need is a doctor who will take care of the pain.” My mother’s final words when she took the drug were, “I don’t think anyone has understood the pain I have been in.” She’d had two lung surgeries prior to the terminal diagnosis. Those are really painful. They cut from your back through your nerves. She had just recovered from one, then had to have another, and just recovered from that and found she was terminally ill. It was really about pain. She had been bedridden for six weeks. She had a morphine pump in her spine, and we never got it to where she was stable enough to get to the beach again. It became clear during those three weeks in the hospital at Christmas of 2000 that she was going to die. That was when the emphasis shifted from doing everything we could to keep her alive to allowing her to die. She had made veiled references to assisted suicide for several months, saying things like, “I’m glad I live in Oregon.”

Her decision to use the Death with Dignity Act was never a secret. I went to every doctor’s appointment with her. I was there constantly the last few weeks. The internist, oncologist, radiation specialist, surgeons, and the pulmonalogist all knew. We were lucky to be so medically sophisticated.

On January 25th she was in her own apartment, looking out the window at the Willamette River. She had already said goodbye to her bridge partners and old college classmates. Her children and their spouses were with her, and her best friend, her sister, and her nephew. She kissed us, and Dick read the Twenty-third Psalm—she insisted on the King James Version. Then she took the Seconal. In five minutes she was unconscious, and in fifteen minutes she was dead.

I was so involved that right after she died I was having flashbacks of all the terrible moments and I think it really helped me progress in my grieving to be able to talk about it. I feel lucky because I can talk about it now, two years later. It’s still there, and often I think of things she would enjoy, I wish she could be here, I wish I could tell her. But I don’t carry a big, dark, ugly thing.

The Death with Dignity Act is all about choice. My advice to a family in this situation is to respect the wishes of the terminally ill. It’s their issue. I think it’s okay to express your opinion to the person, but respectfully. Let your own beliefs be your own beliefs. My mother was very open that she was dying. I think that made it easier for all of us. We were all emotionally present in her dying. I would never presume to exert my control over an intellectually competent person. We all are entitled to our own decisions.

Kathleen Sutherland

Daughter, pulmonary and critical care physician, and mother of two children

I work in the medical community, and I have been with patients when they died. I thought we could manage the end of my mother’s life with good pain control, hospice care, and nursing care that she had the funds for. That was the place I was coming from. I was not real keen on my mother using physician assisted dying at the beginning, but I could definitely understand why she wanted to. When it came down to it, I could see that my mom’s quality of life was not going to be good for those last weeks of her life, so I was okay with her decision.

As a doctor, I would never write a prescription for this medication. It is not a service I want to provide for patients. Do I believe that this service should be available? Yes. Am I willing to refer my patients to another physician and a psychiatrist? Absolutely. But it is not something I would do.

I thought the epidural catheter would work better for her pain than it did and she would be able to go to the beach for a few weeks before she died. My mom had periods when she was better; we went to the Oregon Coast the week before Thanksgiving. Then she got precipitously worse very quickly from Thanksgiving to Christmas.

I think she was very much at peace with dying. Mom wanted to be in control of the moment she died, and she wanted to be with all her children and the people who were important to her. She had lost all hope. She did not feel there was anything worth living for, because she had to be on so much pain medication she could barely carry on a conversation. She didn’t see any point to staying alive that way for another six weeks. My mother was a very strong-willed person and she wanted to be in control during the time of her death; that’s why this law was important to her. To me that was more important than the daily pain issue. I was with her and I think her pain was pretty well controlled by the end. That was my perception. I can’t speak as knowledgeably about it; pain is a complicated thing.

The Death with Dignity Act is a good law, I could see that. My mother was psychologically astute and medically sophisticated. I don’t think the law would have been abused or misinterpreted in our family setting. We were fortunate that our mother was already seeing a psychiatrist before she got her illness, so we were able to use his evaluation, along with the other referring physicians, to say that she was not clinically depressed. I thought the law worked very well for our family. We all had a very close relationship with my mom and we didn’t have any conflict or debate about whether Mom should do this or not; she was in charge.

My sister Ann is a pretty highly functioning mentally retarded person, meaning that her IQ is in the high 70s-80s range, and so she could process all this. She understood that Mom had cancer, she knew that Mom was going to die. She had long talks with Mom about it. I don’t recall having a conversation with Ann where she expressed any concern about this choice. Ann wanted facts: what’s going to happen, how soon will she die, when will we know she’s dead. She would cry.

I really didn’t want my mother to die. I was very close to her and I loved her very much. I valued my time with her. I went through all the stages of anger and grief, and I was able to come around to getting comfortable with it when I realized this was going to happen whether I liked it or not—my mother was going to die.

It was really that process of being there a lot, spending so much time with my mother at the end of her life, that let me understand why she wanted to do this. If I had not done that I probably would have always been uncomfortable with it. If I were to counsel a family in this situation I would say it would be very important for each child to spend enough time with the person who wanted to use the law, talking to them and learning as much about the law and the process as possible. That was the most valuable thing for me.

Everyone should be in charge of their own life, and they should get to die in a way that is comfortable for them. Mom was a unique person. She died honorably in the way she wanted to die. It was the right thing for her.

Ellen Baltus
Daughter, social worker, and mother of two children.

We live in a society that tells us to not talk about dying: just care-take and say all is well, and don’t ask direct questions. But my mother was incredibly direct. She always told us, “When things get uncomfortable or difficult you talk about it.” In our family we talked. To not talk about her dying would have been weird. After Mom got a terminal diagnosis, months ahead of her death I felt we could talk about her dying. We would ask questions like, “So what are you going to do with the time before you die? How are you going to live to your fullest? How are we going to make you the most comfortable?”

We told her, “When you get to the point that you feel you no longer have control, we’re going to make sure we have a prescription for you so you don’t have to live in misery.” I wish we had done it sooner, to be honest. I wish we had gotten the prescription a month earlier, filled it, and had it there. Mom should have taken it days before. I think it would have prevented the suffering she had. People can say it was only a couple of days she suffered badly, but it was awful. She suffered. Mom talked about the frustration she felt that no one would ever under- stand the degree of pain she had been in. I was there, and I slept on the floor next to her bed the night she died. She was waking up in these weird morphine states, half awake and half asleep, crying out, having bowel movements. Nobody should have to live like that, especially a woman with such incredible class. It takes away all sense of dignity. My mother was a classy and dignified woman.

Mom believed problems in life were challenges for us to master and face directly, even simple difficulties like a broken window shade or TV cord. Bigger life issues, like facing her own mortality, her sister’s death, or her divorce, she addressed openly—no matter how painful—with emotion and intellect.

I suspected from the start that my mother would probably choose assisted dying. She was a very decisive person who was never afraid to face and discuss difficult issues. Mom’s attitude was, “This is how I feel about dying. This feels awful, I don’t want to die that way, I want to get the prescription….” She also talked about other details, such as when to die, how she saw her death happening, what she wanted read at her funeral. It was more than just the assisted dying, it was the process of death, too. When you feel like you have choice, then you feel like everything isn’t out of control, or worried every second that you could die at any moment. This way, it feels like you can be comforted in the process.

I have always supported the Death with Dignity law and believe it is an individual’s right to have that choice at the end of their life.

My brother and sister, both doctors, had a discussion on how to help someone die when you’re a physician. It goes against the oath you take, but we weren’t battling this. There was no conflict among the siblings; it was our own personal “how do you get around it?” For me it would be a good choice if I knew I were going to die. I want to live, I want to be with the people I love as long as I can. But if I were in pain I would choose the assisted dying law. That’s what my mother chose.

There was a lot of love for my mom, unconditional love. The weaknesses, the little things that bugged me about my mom became totally irrelevant towards the end of her life because I knew I only had a little more time with her, so I just loved her. My attitude became, “What do you need, Mom? What can I do for you today?”

My mother gave me many gifts throughout her life. They include the gift of acceptance of others and love for divergent thinking. She gave us opportunities to stretch. By the age of eight or nine all of us children were doing our own laundry, a lesson toward self-sufficiency. By the time we went to college we each knew that Mom expected us to take care of ourselves and face any personal challenges. She expected that we would be successful and today we are.

She encouraged our friends to speak openly about difficult and controversial subjects. I loved it when my friends would get into debates and heart-to-hearts with my mom, and so did she. She loved those who did not fit the mold. I felt accepted. Mom also gave me the gift of music. When we traveled to the beach as a family, Mom would teach us songs and harmonies. Each of my sisters and brother would take a part. Even in the last years of Mom’s life her appreciation for music did not dwindle. She went to concerts, performances of Chamber Music Northwest, the opera, jazz, and gospel music. She played music, she sang, and she encouraged her family to include music in their lives.I felt very close to Mom in those last few months and I am very grateful to God that I had the time to share with her all that I needed to before she died. When the day came and everyone who adored her was with her, I was full of love and acceptance for what she was doing. I could see in her face the relief she felt in being able to finally end the suffering. It was a beautiful thing, people were very open.

I remember feeling surprised at how clear-minded Mom seemed the morning of her death, lucid and happy. Different passages were read from the Bible, Shakespeare, and a poet she liked. I watched her take it in, seeming so relaxed and ready. I remember feeling like we needed to take care of my sister Ann, who is retarded, to make sure she was okay. Mom reassured Ann. After Mom drank the medicine she fell asleep almost immediately. We watched her as we cried and comforted Ann. The doctor checked her pulse, and again later, and stated the time of death. People began to leave, going downstairs. I did not want to leave the room until they took her body. I did not want Mom to ever have to be alone, even though I knew intellectually she was gone. I felt she needed someone to stay with her body until it was out of her home. Mom deserved to be protected until the last possible moment. When they put her body in the van and drove away, I felt like my job of caring for her physically was finally over. It is hard to put into words how powerful the experience is, watching someone you need and adore die, and yet be glad. My love is without boundaries and unconditional. I wanted my mom to be given comfort and to be free from pain even if it meant she was no longer in my life.

I would advise people in this situation to get the prescription early. People don’t want to use it until they absolutely have to, they want to live. And if they know they have that choice, than they want to live every moment that they can.

Richard Sutherland
Son, physician, and father of two children

I was totally in favor of my mother’s decision. There was never a question in my mind; I was always comfortable with it. I have always believed in the value of assisted dying, but my personal beliefs about it have little if anything to do with the decisions of an intelligent, competent person who is in pain and dying. Any questions I might have if I were put in that situation are irrelevant. The only potential problem would have been if a new drug or procedure were discovered that would have definitely cured her cancer, and she chose to take the barbiturate instead.

The only concern my sisters and I had was whether one of us should object to her decision, just to see if she was unsure of it and not telling us. We wondered if maybe she was seeing if anyone would give her support if she wanted to change her mind. None of us, that I know of, objected to her decision, but it was a way to check if she had doubts. But when she was confronted on the days when she could talk because she withheld her morphine, she was clearly confident of her decision.

What I would tell a family in our situation is that life isn’t fair. At some point a terrible thing occurs, which rips someone from you. Realize that, and move on to the next phase of helping that person cope with the tragedy. This is about the person, not you. As mad or angry or afraid as you are, the real focus is on the dying individual.

Assisted suicide may or may not be the best way. There may be other ways to bring emotional comfort and relief to the person. When everything is over and done and your loved one has passed on, the family will cope best by knowing they did everything they could to comfort, love, and help the individual in need.

Assisted suicide is an action; you are taking your own life and should be clear why and when that should, if ever, occur. Many people are incapable of that action. No one can create, teach, or produce this feeling in an individual. Many people who know they are dying from a malignancy and what that means and entails, still choose, rightly, not to act. It is their decision. But if your loved one does not want to be bedridden with severe pain and fogged mentally from narcotics, having their feces cleaned by family members as daily occurrences with no hope of change until they die in that very room, then assisted suicide is potentially a very good option.

My mother was a very insightful and intelligent person when it came to the psychological and emotional make-up of people and what makes one tick. There is simply not another person in my life whom I can talk to like I could with her. The “mumbo jumbo” of psychoanalysis was a fluid language with her, and I miss those discussions.

I have other thoughts, emotions, and reflections that come and go as I think of my mother’s death. They are all good because I know she passed away in a manner that made her happy, surrounded by her family who loved her. She wasn’t happy she had cancer, she wasn’t happy to be denied life and playing with her grandchildren. But again, life isn’t always fair. Make the best of your situation. She did.

Lindsay Baltus
Granddaughter, 13, wrote this story one year after her grandmother’s death. She is Ellen’s daughter.

QUESTIONING ANOTHER DEATH

My Grandma Peggy used to smoke. A lot. She’d do that thing where you smoke a cigarette and then when it’s almost out you light a new one with the burning end of the butt. Chain-smoking. She’d smoke all day when my mom and my mom’s siblings were little, smoke all day inside the house and read novels and put together puzzles. Then she got lung cancer. It was before I was born, before my parents’ wedding, and she stopped smoking. She had to have a big part of one lung removed, but she lived and the cancer was gone. Then, years later when I was about eleven, we learned that the cancer had come back. She hadn’t had a cigarette for fifteen years, but she went to have her lungs checked out and there was the telltale black spot. Big and ugly, dark like a grave. I remember we were at an Italian restaurant a little while after my mom found out, and in the middle of dinner my mom started to cry. “Grandma has cancer,” she said. “My mother has lung cancer again, and I’m afraid.”

We were all afraid. Grandma was getting thinner and paler all the time. At first we hoped that the cancer could be destroyed. The doctors tried chemotherapy, and all of Grandma’s amazing naturally dark hair started to fall out. They removed all of one lung, so she was left with half the air a person should be able to breathe and had to have one of those scary oxygen tanks. A year went by, and she was not getting better. Time after time we got a phone call from the hospital or from one of my aunts saying that Grandma Peggy had to be readmitted.

My thirteenth Christmas was spent at St. Vincent’s Hospital. The hospital is a very scary place with its cold hallways and strange smells. It is even scarier when your grandmother, who you love very much, is lying in front of you, all white and bony like a skeleton with tubes plugged into her. Grandma was only half-conscious, her eyes fluttering open and closed. While we sat in uncomfortable teal leather-upholstered chairs, staring at the dully wallpapered walls, she gave us our Christmas gifts. My brother had a huge bag of gold dollar coins. He was ecstatic. She gave me money, too, but I also got a pretty little velvet box. Inside it was a dried rose and a tiny bird’s nest. There was also a figurine of a sitting fairy. Grandma couldn’t walk anymore, so I knew that she must have seen this fairy awhile ago while shopping and thought of me. In that funny smelling little hospital room, I finally realized that my grandmother, Grandma Peggy, who loved me and knew everything about the world, was going to die soon.

Grandma was in pain and everyone knew it. She told her children that she knew she was going to die and didn’t want to suffer any longer. She was prescribed a fatal dose of barbiturates, which she took on January 25, 2001, exactly a month after Christmas. She said goodbye to her four daughters and one son, fell asleep, and died peacefully.

Her death was a controversial one. Assisted suicide is a big deal right now. My mother and aunts are still being interviewed about it, over a year after Grandma’s death. They’ve been in numerous newspapers and this week they will be on ABC News. We are all constantly being reminded that she’s gone. I guess it’s good for us, but sometimes it hurts. It’s been hard for them without Grandma, I can tell, and it’s been hard for me too. Last Christmas there was something missing. There was no one with colorful, flowing skirts and sophisticated perfume. There was no one to talk to about opera, no one around who I could ask any question in the world to and receive an answer like an encyclopedia entry.

Grandma loved to see me act. Sometimes onstage or during rehearsals I wonder if she can watch my plays from where she is. I think she would have wanted the way she died to spark interest. I bet she likes that people are still talking about her, that she made them think and question what they believe. Grandma Peggy liked to stimulate people’s minds, and she’s still good at it.