Matters of Life and Death

Payne: confronting mortality Photo:Jim Wallace

This spring, the Terri Schiavo case generated a storm of media coverage and public debate. Some supported her right to die. Others invoked her right to be kept alive. Still others wondered whether her right to privacy wasn't being trampled upon. Neurologist Richard Payne, director of the Divinity School's Institute on Care at the End of Life, talks about the Schiavo case, its implications, and his own experiences dealing with death.

What was your reaction to the Schiavo case?
I thought that it was a terrible tragedy. Here was this family who had one of their members who was dying, and normally even though there might be some disagreements, families usually are able to come together to support the needs of their dying loved one. That obviously just didn't happen. One reason it didn't happen is because there was this infusion of all of the outsiders, particularly the politicians. Obviously to some extent the family was responsible for that. I think, however, that they also became manipulated and used by the whole process.

Did she have the right to die?
The person really has the right to determine whether or not they want treatment. If the burden of the treatment and the suffering attendant to the treatment is greater than the benefit of not having the treatment, then fundamentally, we have thirty years of hard-won gains--legal precedent, medical practice, and, I think, moral thinking and ethical thinking--which says that it is appropriate to withdraw therapy.

What if, as with Schiavo, the individual cannot vocalize that choice?
The Supreme Court has said that if there's clear and convincing evidence that this person who perhaps can't speak for herself now but has stated that her preference is not to have life-sustaining treatment, that it's perfectly legal to withdraw treatment. This wasn't just Terri Schiavo's husband saying she said this. The courts consistently found that the preponderance of the evidence was that this is what she would have wanted.

The work of "activist" judges?
Well, yeah, the activist judges. Activism is in the eye of the beholder though, right? So it's not "killing." Of course that's a kind of rhetorical trick too, because if you position this as killing, then it's obviously wrong to kill. It's immoral to kill, so that stops all argument. But there is a legitimate other point of view, [which] is to say this is a spouse of a woman who has expressed the desire that the burden and the suffering attendant to living this way is not what she would have wanted, and it's perfectly honorable to respect that choice. Now I would also say that just because something is ethically right, clinically appropriate, and even morally appropriate, I could still understand how it would be psychologically difficult to take. So I can understand from the perspective of her parents. I'm sure they probably in their hearts really felt that this was wrong. But isn't it also wrong for the state or another party to assault your body to say that you must do this even if this is not your wish? I think that that's in fact the greater wrong.

Then what is the government's role?
It's certainly not to [be] forcing any bedside clinical decisions that affect medical practice. The government could be more legitimately fostering a societal discussion about what we value in our culture, what does it mean to be fully alive, how do we value or not value aging and disability. The government could also legitimately be involved in processes and procedures that make the execution of advanced-care planning documents more transparent, easier, transportable.

Will it ever be made illegal?
No, because the hypocrisy here is unbelievable. [House Majority Leader] Tom DeLay chose to withdraw ventilator support from his father, right? That's the story I read. George Bush, as governor of Texas, signed a law [the Texas Futile Care Law] that would allow hospital systems to withdraw under certain circumstances. So I think that the political hysteria of this just drove this to outrageous heights.

Was this simply a divide between the religious and the nonreligious?
I'm Christian, and my understanding of Christian theology is that yes, life is a gift from God and to be valued. But you know, Christ did give up his life, right? For us to be redeemed of sins. And there is a promise of an afterlife. I think the interpretations around a Christian theological tradition were very narrow in their approach and of course skewed to advance a political position.

If you were the physician who was caring for Terri Schiavo, how would you have approached her parents?
I have done this many times. You sit and you talk and you listen. And you have these discussions: What is the benefit of continuing this? What is the burden? For someone in a persistent vegetative state for fifteen years, the chances of ever leaving a nursing-home bed is zero. Now I don't know if the people advising them either said that or if they heard it when they said it the first time. You just try to help them process it.

These techniques of ventilation and artificial hydration and feeding were developed to bridge patients over periods in which the body was expected to recover from treatment or an illness and were never really intended to sustain people ad infinitum, so in that sense they're misused medical technologies. But I don't ever want to give a message that we shouldn't continue to push forward with medical science and medical technology. We just have to be much smarter about how we use it, and we always want to improve the quality of life and to cure disease whenever we have the opportunity.

Have you had to deal with these issues in your family?
Just last year, one of my sisters collapsed one morning in the house. They had difficulty resuscitating her, and she never really awoke from a coma. After about two-and-a-half weeks, we as a family made a decision to withdraw respiratory support because my sister had died. I mean, she didn't officially meet criteria for brain death, but it was very clear to me--once

I could divorce the emotion of "this is happening to my sister"--that as a neurologist I had never seen a patient recover who collapsed, had anoxia for that long a period of time, and now, two-and-a-half weeks later, had no sign of neurological function except for very simple brain-stem reflexes.

But did your emotions clash with your medical knowledge?
Yeah, sure. I was concerned that I was making a decision prematurely, [over-] intellectualizing the decision. And I really didn't, on some level, want this extra burden. It was very, very difficult.

Now when my parents died, they'd lived a long, rich life. They had made statements that they didn't want to be on a lot of tubes. They both died having experienced chronic illnesses, as most Medicare decedents do. It was in a sense easier to let go because knowing this was coming, we were able to say goodbye and do the kinds of things emotionally to prepare.

Will this issue pick up steam, or will it fade?
An organization that I'm involved with, the National Hospice and Palliative Care Organization, is still getting [an] increased number of inquiries from patients and families about how to get living wills and advanced directives done. So there is an increased level of activity, but certainly not the kind of mass hysteria that occurred before [Schiavo] died. But I do think that there is just such a fundamental ambivalence amongst us all about confronting our own mortality that whenever we can, we kind of push it back.

Do you have a living will?
I'm a cancer survivor. When I was admitted to the hospital two-and-a-half years ago, I wrote an advance directive as required by law, and gave durable power of attorney to my wife. Not all physicians have advance directives. There's some evidence that physicians who do are much more likely to discuss them with patients. And there are even some programs now that are having medical students complete advance directives and living wills with that in mind. At least you have thought about, on some level, your own mortality, and it makes it a little easier to have conversations with your patients.

--interviewed by Jacob Dagger-