DAVID BIANCULLI, HOST:
This is FRESH AIR. Because he was a doctor, Sherwin Nuland witnessed many deaths, including those in his own family. Dr. Nuland - who was a surgeon - was the author of "How We Die," an influential book about dying, which won a National Book Award. It was published in 1994. Twenty years after his book was published, Dr. Nuland himself died on Monday at his home in Connecticut from prostate cancer. He was 83.
"How We Die" was written at a time when the prevailing medical practice was to use all means available to extend the life of terminally ill patients for as long as possible - even if aggressive treatment also caused extended suffering in the final days of life. Nuland's book made a notable impact on the national debate about end-of-life care - at a time when palliative care and hospice movement were beginning to assume a bigger role in the care of terminally ill patients.
Terry Gross interviewed Dr. Nuland in 1994, when "How We Die" was published. His book described death in its biological and clinical reality. Dr. Nuland believed that only by a frank discussion of the very details of dying could we best deal with those aspects that frighten us the most. We all hope to die a good death, Dr. Nuland wrote, but the good death is a myth, and the chief ingredient of that myth is death with dignity.
SHERWIN NULAND: We have this idea which is propagated by books, by articles that we see in journals and in newspapers, that death somehow is a noble series of events that culminates in the great deathbed scene of the dying person - or perhaps the patriarchal person - surrounded by loved ones and he or she is imparting final wisdom, and then there are no strands left untied. That almost never happens, and when it does happen, it's an absolute coincidence and has very little to do with the life of the person that occurred before that final period of life.
TERRY GROSS, HOST:
You feel you've rarely seen death with dignity?
NULAND: One of the points I try to make in this book - and I make it a number of times and a number of different ways - is that what gives dignity to death is the dignity of the life that preceded it. When we have brought about a situation where we are loved and we love, where our lives have been lives - not necessarily of great accomplishment, but of a sense of having given something to others - whether those others are as close to us as our children or parents or whether those others are as far away as a radio or a television audience. When we have done that, our deaths have dignity. Our deaths become a part of our lives in the sense that with our deaths we give something to those who are left behind as we have given our lives to them.
GROSS: In your book you write about something very personal that happened to you, and that was your brother had colon cancer. Colon cancer had killed your mother when you were 11. So when your brother got colon cancer, he asked you to be his doctor and to, you know, help him decide what he should do. And you say in your book that you had discovered how much the cancer had spread and how - just how far gone his condition was, but you didn't want to tell him the extent which the cancer was spreading. You were afraid of telling your brother the truth. You were afraid it would take away his hope. Why did you make that decision to not tell him the truth?
NULAND: Well, first, I have to point out that I wasn't his doctor. Actually, I've always followed a philosophy of choosing the best doctors I can for people in my family who become sick and just agreeing with what they think is appropriate if it seems reasonable, and that's what I did. In my brother's situation, he was in another city, he was here in New York City and of course I was in New Haven and I watched this process unfold. What actually happened was that he was operated upon and the finding was a very far advanced malignancy - which from every bit of clinical knowledge I had, and this is a disease that I treat every day of my life in New Haven - every bit of clinical knowledge I had could not possibly be cured.
I told my brother (unintelligible) cancer. I told my brother there was cancer in his liver. I did not want to beat him over the head by telling him there was fluid in his abdomen and there were cancer cells in the fluid and there were dots of cancer on every - virtually every - intraperitoneal, intra-abdominal organ. I didn't see at that point the sense in that. But the mistake that I made by not telling him everything was to make him think that there was a possibility that something could be done. What was even worse was that when I looked at him, my boyhood friend, you know - we had gone through so much together through all these years. When I looked at him, I saw in his eyes myself reflected, the smart kid brother who'd gone off to Yale and become a doctor and I should be able to save him. So I began looking - is there something new? Is there something new? And my god, there was an experimental therapy that I knew perfectly well stood only a small chance of getting him through.
But foolishly, at that time, I thought of hope as being the hope of cure, the hope of rescue, and I followed the philosophy that anything is better than death. So what I did was to put him through - this was at my suggestion, my recommendation - a series of chemotherapy treatments that stood only a very small chance of curing him. And what I succeeded in doing was to take away an opportunity for some months of being with his family at peace, slowly dying of this disease. And what I exchanged for it was a death that was terribly, terribly difficult. And I have not forgiven myself for it. I should not forgive myself for it. And I write about it in the book because I wanted people to know that with the very, very, very best of intentions what we sometimes think of as something very good for those we love turns out to be very bad for those we love, because had I been a detached, clinical physician in New Haven and such a patient had presented himself to me, I would've said don't do this chemotherapy protocol. It's senseless. You stand only a small chance of cure, we shouldn't do it. But this was my brother and so I lost all my objectivity and I tried it.
GROSS: Let me ask you. Had you not tried it after your brother died, might you have been wondering, say, we tried that therapy, sure there was only a small percentage that would've helped him, but it might have, maybe I should have given it a shot?
NULAND: That's one of the reasons I tried it.
GROSS: Mm-hmm.
NULAND: I didn't want to have to later on say, I should've given it a shot. But that's exactly what I mean when I say it's with the best of intentions...
GROSS: Yeah.
NULAND: ...that we carry out these exercises in futility, we want to do the right thing. But what we should do is step back and let more objective people make such decisions.
GROSS: I recently read an article in The New York Times that talked about how difficult it is now for patients to make decisions about what course of therapy to take or whether to not take any at all because it's hopeless. And, you know, doctors have given us the chance to participate in the decisions. On the other hand, to participate intelligently you nearly have to become a doctor yourself sometimes. Is this a dilemma for you as a doctor, how much a patient needs to know in order to kind of participate in an educated way in one of these big decisions?
NULAND: Well, I think that's a major problem. We were taught in my day in medical school, and certainly that continued into the '60s, '70s and '80s, to be what's called a paternalistic physician. Only we can understand the proper course of therapy in any disease.
I tell the story in the book of a 92-year-old woman who had a perforated ulcer of a duodenum, and she came in with peritonitis, and she wanted to die. She had no relatives. She really felt she had nothing to look forward to. And I said, Ms. Welsch(ph), you know, there's a one in three chance, and you have to be crazy not to take the one in three chance, and I talked her into it.
She survived the operation, but she had a stroke a few weeks later when she was back at the convalescent hospital, and she died. And I realized looking back on the whole situation that I had taken my value system and forced it on her. And my value system as a high-tech surgeon in a university teaching hospital, a one in three chance was certainly appropriate to take. Anything is better than death.
Well, you know, that's not true. It's not true that anything is better than death. As a wise oncology nurse said to me, there are many people, more than you would dream, and many of our listeners I think probably fall into this category, for whom what you have to go through in order to come out on the other side alive is simply not worth the effort.
I've seen so many patients, particularly elderly patients, over the years who become debilitated and changed by the process by which I cure them or another doctor cures them. And has it really been worth it?
GROSS: One more thing, you talk about how doctors have always been taught to give their patients hope even if the patient is dying, but you write about the need to redefine hope. How do you define hope now, the kind of hope you want to give a dying patient?
NULAND: Well, let me define hope in a meaningful way, at least a way that's meaningful to me. You know, if we were going to use a dictionary definition of hope and look them all up, we would find out that the one thing that brings them all together is the belief that some good thing may yet happen. The good thing that may yet happen during dying is not the possibility of survival when we're beyond that point.
The good thing that may yet happen is that our lives will have great meaning for those we leave behind. To me the hope that can exist at the time of death is the hope of our heritage, that we have really meant something to people, whether they are our own children or friends or students, whatever - or people who listen to us on the radio. That's the hope, the hope that your heritage is something good for others.
And I think when you think of death as being part of the life cycle and recognize that death is an inevitability for our species because the world has to be renewed with each death, then the hope becomes when it is renewed it will be renewed by people on whom I have had some influence for good.
GROSS: I want to thank you very much for talking with us.
NULAND: Thank you.
BIANCULLI: Dr. Sherwin Nuland, the author of "How We Die," speaking with Terry Gross in 1994. He died Monday of prostate cancer at age of 83. Coming up, film critic David Edelstein reviews Wes Anderson's new movie "The Grand Budapest Hotel." This is FRESH AIR. Transcript provided by NPR, Copyright NPR.