Dying is not a medical event.

The Remarkable Value of Dying Well
Ira Byock and the Missoula Demonstration Project

In a time of wild upheaval during the last half of 1997, I was brought back to center again and again by an exquisitely compassionate book by Dr. Ira Byock called Dying Well. Each night, I would fall into bed, exhausted, only to be instantly revived by his stories about helping people die with dignity, comfort, and grace. Rarely have I encountered such congruence in anyone's work, a harmony of words and action that reveals the wisdom of an educated heart. 

Ira Byock, M.D., has been active in hospice and palliative care since 1978. He has served as president of the American Academy of Hospice and Palliative Medicine, is a professor at the University of Montana, and is currently on the Board of Directors for the National Health Council in Washington, D.C. In his role as founding president of the Missoula Demonstration Project, he is working with others in his community to show what is possible in transforming end-of-life care. Dr. Byock has also been featured on numerous radio and television programs, including "Nightline," NPR's "All Things Considered," and "The Late Late Show" with Tom Snyder. 

His rather intimidating list of credentials notwithstanding, I found Ira to be real and down-to-earth. When I called him at the appointed time, he was involved in dinner preparations at his home, which is attached to his office in Missoula, Montana. Occasionally, he would pause to lend support to his daughter, who was helping with the mashed potatoes. Somehow, this provided the perfect backdrop for our conversation about death. 

Cat: What draws you to work with people who are dying?

Ira: What hooked me initially is the same thing that continues to draw me. That is, when people's basic needs have been cared for during the dying process, they will sometimes say, "This is a remarkable time in my life." 

The first three or four times people said something like that to me, I dismissed it. It was nice, but I had no conceptual model to understand it. Actually, that isn't quite true. I did have a model, but it wasn't a Western model. I'd spent significant time in meditation classes and studying various religions of the world. In the late 70s, I'd also taken a class with Ram Dass that dealt with end-of-life issues. 

I could explain some of what I witnessed clinically by referring to Buddhist models, for instance, but I struggled to integrate the spiritual perspective with what I was learning in Western medicine. 

After hearing a number of people talk about the value of the end of life, I realized that the universe was trying to teach me something. I began to pay particular attention to cases that went well. 

From the standpoint of Western medicine, it seems that the best one can hope for is the relief of suffering at life's end. I don't mean that pejoratively, but the conceptual model of Western medicine is built on illness and injury. The goals are cure, life prolongation, relief of suffering, and restoration of function. 

Cat: As if we're robots!

Ira: Yes. Within that problem-based model, there's no room for somebody who says, "This is the best time of my life." It doesn't fit! 

At some point, I began to use a developmental model to work with life-limiting illness and the end of life. The final stage of life is often inherently turbulent, yet it also presents us with opportunities to grow. 

For me, hospice care and palliative care, at their best, look more like newborn pediatrics than adult medicine. In adult medicine, you must have a problem or you don't warrant medical intervention. Also, doctors only do minimal amounts of screening for adults, and it's always disease-based. 

In newborn pediatrics, on the other hand, notice first that we approach this tiny patient with his or her family as the unit of care. It's true that our first priority is to address problems that we — or the parents — detect. However, we also do robust amounts of preventative medicine and screening in pediatrics. 

Though we screen for congenital disease, we also screen for the quality of children's interactions, and we observe the quality of bonding that takes place between newborns and their caregivers. We even ask about the quality of play. It's important for children to be stimulated sufficiently so their nervous systems develop. 

That brings me to the third point, which is the pediatrician's responsibility to help preserve the opportunity for the child to grow inwardly, and for his or her family to grow together. 

This is the treat, prevent, promote approach. We treat problems that we observe or detect. We prevent foreseeable problems that we know are likely to occur during this turbulent time in life. And we consciously promote opportunities for the individual to grow inwardly and together. 

This approach also describes what we do when hospice care is at its best. 

Cat: I love how you treat dying people with such deep respect. People who are dying deserve to be treated as warriors embarking on a vision quest.

Ira: Yes. Not only do we honor their struggle, but also analogous to pediatrics, we try to nurture them whenever possible. Frankly, we pamper them! 

One of the things that distinguishes us here in Missoula is that we're out of the closet about this. We outwardly acknowledge that we pamper people as much as possible. 

Cat: You make this potent statement in your book: "If death on the wards was macabre, in the ER it was ghastly." I've heard it's not uncommon for people in hospitals to die in the middle of the night, when no one is around. In your work with hospice, is it less common for people to die alone?

Ira: It's certainly less common in hospice for people to die alone, but there are more than a few anecdotes about people dying when a loved one leaves the room. I remember a situation a few years ago with a man I'll call Jason. Jason was a very healthy young man, who had a fluke cardiac arrhythmia. He was resuscitated, but remained in a deep coma. He could breathe on his own, but that was about it. 

Jason had a young wife, and his family came out from the Midwest to be with him. Together, they made the decision to stop feeding him via his tube, and to let him gradually pass away. 

His own physician was out of town, so I went to see Jason. I evaluated him carefully, and wrote a note in the chart saying I thought he would probably last a week or more, based on his physiological condition. 

On the way out, I saw his family arriving, so I stopped to visit with them. I told them my assessment, and asked if there was anything we might do further to ensure that their loved one was comfortable and cared for. They said no, that we were doing a good job, but I inquired again. 

His father looked at me and said, "What I would ask you to do, I know you can't do." 

I had a sense of what he was thinking, but I said, "Please tell me what that would be." 

He said, "Well, I would wish you to end this for him." 

I said, "If you mean you'd want me to end his life right now, I hear what you're saying, but I don't think that's part of my job description. I'm here to make sure he's not suffering, and that he's cared for in a way that I would want any loved one cared for, for as long as he lives." 

Then I said, "I have no idea why this happened to your son. It makes no sense to me either. Yet I also see that you're here now with him, and that you didn't just get a call in the middle of the night." 

His father responded to that, getting tears in his eyes, and said, "You know, these last two weeks have been incredible. We got to meet so many of our son's friends, and my wife and I have come to know Jason's wife in a way we never had before. Thank you, doctor." 

I drove back to my office, arriving ten minutes later. When I walked in, Jason's nurse called, saying he had just died. I tell you this long story because from my perspective, it seemed that Jason had listened to his father's conversation with me, and he had a sense that he could finally leave. 

Cat: From my own work with people in comas, I'm sure he heard you. Listening to you tell this story reminds me of a line from Dying Well, regarding assisted suicide: "What may appear philosophically to be a fine line is, in practice, a chasm." Do you ever struggle with the line between palliative care and assisted suicide?

Ira: For me, Cat, I simply don't think assisted suicide is part of the role of a physician. Frankly, I don't think that it's part of my stance toward another human being. It seems to me — and I say this in a very personal way — that it's hubris to know when it's someone else's time. 

I cannot even begin to answer the question of whether there is a right or wrong way for somebody to live or die. However, from within my relationship to other human beings, where I perceive suffering, I am drawn to respond, but I think it crosses some line of inherent humility for me to act with the intent to kill another person. 

I think that suicide and assisted suicide are extraordinarily different acts. Suicide can be a purely personal and private act, certainly in the context of far-advanced, incurable illness. I would not in any sense begin to judge the suicide of a person, but for me, assisting in that suicide changes the act significantly. 

Given the large amount of public support for legalizing assisted suicide, those of us who speak against it are sometimes misconstrued as being arrogant, but that's so different from what I'm feeling! For me, this is clinical, and even spiritual, humility. 

Cat: Again and again in your book, you promised people that you would not let them suffer unbearably. As someone with chronic pain, some of it untreatable, I was troubled by that promise because I know doctors aren't omnipotent. I was relieved when I came to Chapter Ten, where you met your match.

Ira: Yes. There were a lot of interesting things about the situation with Terry (not her real name). Terry didn't die well from my perspective, and yet "dying well" has to do with people's own values. I think she did die well from her perspective, because she demanded that life be plucked from her. 

Cat: That's the ultimate form of respect on your part, to sit with that choice.

Ira: Not just me, but the whole team here. We are so committed to alleviating people's physical distress, yet Terry asserted herself and said no to much of what we had to offer. Also, a lot of our usual techniques didn't work with Terry, because of the location and form of her pain. 

Push came to shove in her situation. Despite enormous doses of narcotics and other drugs, she remained in excruciating discomfort. In the end, with her permission and with the encouragement of her family, we did ultimately institute the use of sedative medications — not to end her life, but to ensure that she would be physically comfortable. The cost of this comfort was that she was not alert. She was basically asleep during the last two days of her life. 

Interestingly, after she died, her husband admitted to me that when she was still alert and in so much pain, he would have thanked me if I would have injected a medication to end her life, but he said those two days were of incredible value. He was so glad we didn't end her life. 

He had a chance to sleep with her for the last time, which he'd not been able to do for weeks, and their children had a chance to see their mother fully comfortable. 

Cat: One more question, Ira. What's the cutting edge of your own thinking in regard to this work?

Ira: The cutting edge is in community. Dying is not a medical event. Dying is part of the life of every individual. As individuals, as family, and as community, I think we need to take back and reintegrate dying within our lives. Some people need expert medical and nursing care as they die, certainly, but dying is so much more than a set of medical problems to be confronted. It's fundamentally personal. Despite the fact that dying is an inherently difficult time of life, it does have its own remarkable value.

You may contact Ira Byock, M.D., or learn more about his work by visiting his Web site at www.dyingwell.org.

Dying Well: The Prospect for Growth at the End of Life (Putnam/Riverhead) is available at your local bookstore.

This interview is from a series on death originally published by The New Times (1998-99).