Dying Well in Missoula
Thursday, November 6th All Things Considered

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JAN WILMS, MEDICAL ETHICIST, ST. PATRICK HOSPITAL, UNIVERSITY OF

MONTANA, MISSOULA: I have my preferences about how I think I would prefer to die, and I don't think the model that is being touted here would work for me.

HOWARD BERKES: Jan Wilms watches the Missoula Demonstration Project from her medical ethics chair at St. Patrick Hospital in the University of Montana. She's uncomfortable with what she sees.

JAN WILMS: I'm not sure that I'm in a place that I could make that sort of spiritual voyage that seems to come out of these models. I think that I would prefer to be left alone, thank you, or wake up dead one morning and not go through the process.

So, I worry about those of us who maybe wouldn't consider that -- the ideal way to die.

HOWARD BERKES: Some people want to be kept alive -- tubes and machines and all -- to squeeze out every moment of life, or in hopes they might get better. Some decide the end of life isn't worth living, despite sensitive and attentive care, powerful drugs, and the promise of emotional healing. Medical ethicist Jan Wilms.

JAN WILMS: There are still some things we can't make nice about dying. You know, I'd -- I have -- would have, personally, a great fear of having all of my bodily functions completely out of my own control. You know, this is a privacy thing. This is a body image kind of thing. It may be a form of psychotic reaction. But, that would bother me.

So even if I were pain free, I'm not sure that there shouldn't be a space for a place or a time, or an option, for people whose suffering is not in the realm of physical pain, but emotional pain or despair or whatever, to have an end of life option besides the model.

HOWARD BERKES: The Missoula model, Wilms fears, is enveloping the city with the kind of fervor that makes skepticism elusive. She has these questions:

Will people yield to community pressure and die the way they're expected to die, rather than dying the way they want? Will they feel pressure from the doctors, nurses, bath aides, and hospice volunteers caring for them, and worry they'll get less attention if they reject the model?

Will doctors, nurses, hospitals, and nursing homes yield control of their patients, and change their procedures to accommodate these good deaths? Will doctors overcome years of training aimed at curing illness and saving life, and be satisfied with simply making dying patients comfortable?

And will the model work elsewhere, even if it works well in cohesive and progressive Missoula? Ira Byock acknowledges these questions, but he insists the project is more process than prescription.

DR. IRA BYOCK: I really worry a little bit about this being misunderstood as, you know, the way to die and being seen as somehow formulaic or expected. I don't think there's a responsibility to die in a certain way. Basically, all I'm really saying is that dying well occurs when there's a sense of meaning and value and purpose experienced by the person, and that our responsibility is to take care of the basic human needs and allow that to occur.

HOWARD BERKES: The project's so new it's unclear what that actually means for dying patients, for their care, or for the people in institutions caring for them. But some people in Missoula have already been affected in profound ways.

SOUND OF RUSHING STREAM AND BIRDS SINGING

Upstream from Missoula, along the Clark Fork River, deer graze and birds sing in a meadow shaded by cottonwoods. This is where rancher John Holden sought solace when his mother died. Their relationship was strained to the end, he says, real healing was needed. Help came with an unexpected call from an interviewer with the Missoula Demonstration Project. She offered to listen.

John Holden on left Howard Berkes on right

JOHN HOLDEN, RANCHER: I think one of the things it did for me is that in talking about some of my resentment towards my mother, you know, we were even able to laugh about some of it, as well as feel bad about it. But -- and just by being with somebody who was open like that, and she accepted -- there was no judgment. It was caring. That helped me deal with it.

HOWARD BERKES: Holden's conflict with his mother was so deep, he says, he couldn't resolve it with her before she died. He has to do that within himself. Holden adds that the project's focus on grieving and dying is refreshing.

JOHN HOLDEN: Oh, I think people deny the fact that they're gonna die. I think realizing that one is going to die is important. I think it makes a lot of difference as to how we can face today. I think it can make facing today much easier. I think it allows a person to do that rather than getting drug down in things of the past or what they think people will think, or worrying about the future.

I just have nothing but admiration for those people. They're willing to take that kind of risk. And that's what a lot of this boils down to is, you know, taking the emotional risk to face the realities of life.

HOWARD BERKES: That's a risk Erin O'Connor says she's ready to take now. O'Connor's a nurse who spent 20 years at deathbeds and thought she was completely comfortable with dying, until she began to work with the Missoula Demonstration Project.

ERIN O'CONNOR, NURSE, MISSOULA DEMONSTRATION PROJECT: In spite of all these years of being in those kinds of settings where people die every day, I had never until this last couple of months of being involved with this project, talked about death, in spite of the fact that I personally lost a young child at the age of three and a half, but no one in my professional circle, no one in my family was ever comfortable talking about death. I was never comfortable talking about it. My child died over 30 years ago, and I have had five other children. They don't know their brother.

HOWARD BERKES: O'Connor finds hope in something the project is endorsing -- shrines to the dead built by families and friends.

ERIN O'CONNOR: I have many objects at home from my little boy that I'm planning now to invite my oldest son, who was just two years old a week after his biggest brother died, to participate with me in building a shrine to his brother, whom he still remembers very vividly, but [whispering] we don't talk about.

SOUND OF BANJO PLAYING AT BLOCK PARTY

HOWARD BERKES: The spring block party celebrating Ira Byock's success went long into the night, but little was said about dying that evening, except indirectly by a surprise guest.

DR. IRA BYOCK: Well, you made it. I am honored.

RUSSELL HAASCH: We decided we were going to bite down and drive over and say hi, anyway, to you.

DR. IRA BYOCK: Good.

HOWARD BERKES: "Russell's here" some murmur in the crowd. Russell struggles out of his car and into a lawn chair, an oxygen tank at his side. Dr. Byock hands him a plastic cup filled with beer. "To life," he says as they toast.

RUSSELL HAASCH: I'm just going to stay right with it. I did. I tried. I tried. I tried to stay with it. Do the best I could – really did -- enjoyed life -- really enjoyed life. Had a lot of fun.

HOWARD BERKES: Russell tells us later he wants to stay up all night and dance, listen to music, drink beer, and tell lies. But he tires quickly and smiles and waves meekly from the front seat of the car, as Sally drives him home for a night's rest and another day of living.

SINGERS:

I wonder where you are tonight

APPLAUSE

BAND MEMBER: Bring down the house. Whoo-hoo.

BAND MEMBER: Thank you.

BAND MEMBER: Thank you.

BERKES: This is Howard Berkes reporting.

ROBERT SIEGEL: If you'd like to more about end of life care, visit our website at npr.org. There, you'll find transcripts of this series as well. Tomorrow, the changing place of palliative care in medicine.

This is NPR, National Public Radio.


Dateline: Linda Wertheimer, Washington, DC; Robert Siegel, Washington, DC

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