What does it mean to have a good death? Few people long to spend their last hours with their bodies stuck full of tubes, listening to the hum of high-tech equipment under fluorescent lights. Yet every year, hundreds of thousands of Americans die in hospitals, where doctors’ aim is to cure at all costs, using expensive and often invasive treatments to prolong their patients’ lives by days, weeks, or months.
For the past two decades, Sherwin Nuland, a surgeon and bioethicist at the Yale School of Medicine, has been advocating for a dramatic change in our attitudes toward death. In his 1994 book, How We Die: Reflections on Life’s Final Chapter, he argued for an approach to death that emphasizes dignity above treatment. How We Die spent months on the best-seller lists and won the National Book Award. But in the ensuing years, Americans’ zeal to stave off the inevitable seems to have grown rather than diminished, leaving too many caregivers and family members to watch patients experience slow, agonizing deaths in an unfamiliar place.
Katy Butler, a longtime health journalist, began asking herself many of the questions Nuland raised when her father, Jeff, suffered a debilitating stroke. As his brain deteriorated, a pacemaker kept his heart beating, prolonging his life for years after he told his wife, “I am living too long.” His cardiologist refused to remove the pacemaker, and although Butler and her mother were Jeff's legally designated surrogates, they were bewildered and disempowered by the doctor's decision. Butler’s new book, Knocking on Heaven’s Door: The Path to a Better Way of Death, chronicles her father’s decline, her mother’s unraveling as she cares for him, and the health system’s struggle to determine when death becomes a blessing and living becomes a curse.
In this installment of “The Conversation,” a new Prospect feature that brings together two writers, artists, scholars, or public figures to engage with each other on a timely issue, Nuland and Butler discuss our cultural failure to care for the dying, and offer some ideas for how we can do better.
Sherwin Nuland: In 2010, I wrote a catching-up chapter for How We Die. In order to do that, since I’m not practicing medicine anymore, I contacted colleagues in teaching hospitals to find out what’s changed in the two decades since I wrote the book. I was stunned to discover that not only has there been no improvement, but things are a great deal worse. In reading about different ways your father and your mother died, Katy, one gets the impression that unless we have a dying person who retains a large degree of autonomy and strength until right to the end, things will be very difficult, even today. Most writings about our miserable attempts to aid in death and dying have focused on high-quality medical centers. Yours, as far as I know, is the first book to show how primary physicians, too, are letting us down. Nobody, even knowing your family’s values, was willing to go ahead and do the thing that would have made sense, which was to stop your father’s pacemaker. So what you’re pointing out in your book is not just a failure of these high-tech institutions—it’s a failure of the entire system, at every single level.
Katy Butler: Yes! I came to see that it’s a continuum. When we only try to improve care in the last six months of life, we miss the boat. We need to be thinking in terms of the last five years of life. This is partially because doctors and families overestimate how long somebody is going to live. Nobody is prepared for death, and we could do a lot more intelligent planning and care. But there are also fundamental structural changes that need to happen. Medicare has a very arbitrary cutoff for hospice. You have to be six months away from dying to qualify. But where is it written that six months is a significant time period? The other issue is reimbursement. In my family’s case, it’s easy to say that our primary-care doctor should have rushed in for us, but how many other aged people on Medicare does he have in his practice? We should be tripling the payments for hospice and family doctors and cutting the payments that go to cardiologists. Because those specialists make three times as much as the family doctors.
SN: But you’re only talking about the part of the continuum that happens at the end of life. I think the continuum begins with the first day of college, when students begin to prepare for their medical studies. Aspiring doctors learn very little about humanities. They don’t understand the culture, the way human beings think, where our general values come from. The best of them train in teaching hospitals, where the atmosphere is to cure at all costs. We have to teach our doctors differently; we have to teach them that medicine is not, in fact, a science. Medicine is an art that uses science in order to fulfill its needs, and its primary needs have less to do with curing than they do with caring.
KB: I wrote about this in the 1980s when I went to watch decision-making in intensive care at a major teaching hospital in San Francisco. The teaching doctor would say, “Tell me about this patient.” And the students would say, “He’s cyanotic,” rather than, “He’s blue.” Of course, every profession has its argot. But I wonder if this language trains people to disconnect from their hearts and their intuitions as they deal with patients, so that medical school makes them less qualified to have a conversation with a family member. What do you think?
SN: Physicians are trained in regimentation. One must be part of the group and think like the group. Emotionalism has nothing to do with it; everything must be completely scientific, and we march in lockstep. Nobody is going to say, “This man is 78, he’s had two strokes, his wife is essentially beaten to death, and his children live in Monterey, and here we are in Connecticut. None of what you are suggesting makes any sense.”
KB: Yes. It seems as though these students were learning a different psychology and a foreign language.
SN: The word “foreign” is perfect. Young students and residents aren’t supposed to be fully engaged with the process. Medical educators want the distancing. They want the objectivity.
KB: Even the word “prognosis” is a difficult word. Why isn’t it a “forecast?” The language is so obscured and euphemistic and technically intimidating to the layperson that it’s no wonder people feel absolutely bewildered. Meanwhile, in my experience, the nurses were much more in touch with the actual pain and suffering of the patients and the families than the doctors. The doctors breezed in, ordered a lot of tests, and left. They didn’t sit with their patients day after day and experience their suffering.
SN: It’s a symptom of a much larger disease: detachment. Young people are taught to detach themselves from the emotionality of other peoples’ suffering. In my own medical-school class, there was a woman who spent a lot of time with people and listened to their stories carefully. She had no great academic achievements, as far as the professors were concerned, but they gave her the award for the most compassionate physician, which at that time we laughed at because nobody thought that was important. What was really important was the person who could make the rare diagnosis or read that electrocardiogram faster than the other people in his group.
KB: It’s so ironic. The people who treat the heart, which has always been a symbol of something deep in the human spirit, are called electrophysiologists. They’re a hybrid between an engineer and a doctor. So it’s not surprising that these engineers wouldn’t be able to relate to families.
SN: Some people think that the people who are going into medicine today are more likely to be technologically minded. I’m not convinced. But I think doctors who are involved in teaching have gotten much better at leaching the humanity out of their students, because the humanity gets in the way.
KB: It’s so sad to hear you say that.
SN: That’s why we have electrophysiologists who have no patient contact at all and don’t feel that they need that human element. But we get to the end of life, all of us need it more than ever, because a patient’s values, the patient’s religious beliefs, the needs of the patient’s family become paramount. Our doctors have been taught that you keep struggling until death, but that isn’t it at all. A doctor today might know in his technical mind that the chance of a useful recovery for his patient are very small, but he’s not going to give in.
KB: So if doctors give up their detachment, how do they stop from burning out? If doctors open up their hearts more, as you and I are recommending, how do they save themselves from becoming completely emotionally drained?
SN: When I was in medical school 50 years ago, I was taught that it was dangerous to have an emotional relationship with a patient. But my experience has been just the opposite. The real way to avoid burnout is to stop trying to prevent your own emotions from coming out.
KB: And do doctors feel hesitant or afraid to speak out of their own values? For example, patients often want to say to a doctor, “If it was your mother, what would you do?” What they’re really asking is, please come to the question of my parent or my relative, not out of your technical knowledge but as a full human being. What is the loving and moral thing to do here? When it’s time to disconnect a person from the respirator, the burden falls on the family. Suddenly patient autonomy becomes paramount. But doesn’t the doctor, who often makes things sound better than they are, have some moral responsibility here?
SN: You use the word “autonomy.” When I think of autonomy, my thoughts jump to the very end of life. Why can’t I think about autonomy in regard to which medication I want to take? Does it suit my lifestyle? Does it suit my scheduling? These decisions are not small. But that kind of autonomy is easier for a reasonably well-educated person who has thought about these issues. The vast majority of Americans have not given philosophical thought to death. Many haven’t used their formal education in over 50 years.
KB: Well, I think we underestimate some people. My partner’s cousin has only a high-school education, and he’s an auto mechanic on Long Island. His mother, who was in her nineties, was living with him. One day, she had a long fainting spell and ended up in the emergency room. They wanted to keep her overnight and do tests, and he said, “Over my dead body. She was halfway through eating a piece of red-velvet cake, and all she wants to do is go home and finish her cake, and I’m taking her home.” His mother stayed alive for another five years. Just talking to him made me realize that it’s not only people like you or me who can figure this out. If you have some faith in yourself, that can help you resist the default path to a bad death.
SN: I don’t think there are a lot of people who have the moral fiber that your friend had in making these decisions for his mother. Remember that the strongest authority figures are not judges or senators; they’re doctors. In all of my medical career, I have never made a suggestion to a family that they rejected. And do you think every suggestion I made was the right one? Of course not. But here I was with my white coat and my stethoscope tucked into my pocket and my air of certainty, and they did what I said. Really, the question we need to be asking is, what can the government do to change all of this? We keep talking about health care, when we really mean health services. Our system pays for health services; it does not pay for health care. Almost twenty percent of Medicare patients live on less than $15,000 a year. Most people don’t have money to pay for a home health aide, or when they get one, they tend to not be very well trained. Why should a cardiac surgeon make five or six or seven times as much as a family physician? The government can do something about that.
KB: There’s so much we could do to improve the quality of life for anyone with a chronic illness. Right now, hospice is a dumping ground for the last three or four days of life. People should be allowed to enter palliative care and hospice earlier, and those services need to be much better funded, not just sold to the public as a morphine drip to keep you comfortable for the last three days of your life. If family doctors are well paid for their time, and people have good relationships with them, then patients and families can really talk to physicians about their values. Right now, people are shamed into putting on a good front for their doctor. They should be able to say, “Look, I’m the caregiver, and I’m absolutely exhausted. I don’t know how much more of this I can stand.” But it’s easy to get depressed about this. I mean, the medical lobby is one of the three biggest lobbies in Washington. There’s defense, there’s financial services, and then there’s the panoply of health-care services. My father had a lot of trouble getting speech therapy, which really helped him. And yet, at the wink of an eye, he could get $22,000 worth of pacemakers and hernia surgery. It’s not a no-brainer to say, “Ah, this is irrational! We’re going to create a rational system that really serves patients rather than providers.” It’s a dirty battle down in the weeds to make any of these changes.
SN: I notice that we’re talking over and over again, you and I both, about problems, and we’re not talking about solutions. So, let me outline a solution and ask what you think of it. First, I’m going to tell a little story. I have four children. The first two were born the old-fashioned way, with their mother in an operating room, all hair shaved off, legs pointing in two different directions, and a board-certified obstetrician doing the delivery. The next two were born in a birthing room, which was just like a bedroom, in a birthing bed, which was a bed very much like the one they had been conceived in. The babies were delivered by a midwife. I cut the cord not because I was a doctor but because I was the father, and I wanted to cut the cord. I was emotionally overwhelmed. With tears streaming down my face, I said to my wife, “What made the change?” And she looked up at me and said, “The women’s movement, dummy.” And she’s right. The women’s movement started with a few people making appropriate demands and a lot of noise. What we need in this country are a few leaders, a few loudmouths who are willing to take an awful lot of abuse. The changes we want are not medical changes or technological changes—they are changes in American culture.
KB: I see it as a feminist issue, too. The brunt of hands-on caregiving falls on elderly wives and daughters like me. There is something like 21 million people involved in caregiving for people over 75. We’re becoming exhausted, and we get very little social support. But as this group becomes more conscious, I think things will change, because baby boomers are famous for questioning authority and working as a group to challenge the status quo. If we succeeded in transforming birth, I swear we can do the same thing for death. And I still think you’re underestimating the non-educated person. I’ve gone to makeup counters several times to prepare for this book launch, and when I tell the people working there what my book’s about, we end up having the deepest conversations. People have tears in their eyes. They tell me about how their grandmother is exhausted taking care of the grandfather, who had one of these last-ditch surgeries and now is very demented. Those conversations have really given me hope. I hope people like that actually buy the book, and I hope you’re wrong that it’s only for The New York Times–reading audience. Conversations about this don’t have to be limited to the elite.
SN: I have often hoped I was wrong—but it’s never as much as I am hoping about this.