For all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks. Consider how our Presidents died before the modern era. George Washington developed a throat infection at home on December 13, 1799, that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to strokes, and died within two days. Rutherford Hayes had a heart attack and died three days later. Some deadly illnesses took a longer course: James Monroe and Andrew Jackson died from the months-long consumptive process of what appears to have been tuberculosis; Ulysses Grant’s oral cancer took a year to kill him; and James Madison was bedridden for two years before dying of “old age.” But, as the end-of-life researcher Joanne Lynn has observed, people usually experienced life-threatening illness the way they experienced bad weather—as something that struck with little warning—and you either got through it or you didn’t.
Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 medieval Latin text was reprinted in more than a hundred editions across Europe. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.
These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are? Is someone with terminal cancer, dementia, incurable congestive heart failure dying, exactly?
I once cared for a woman in her sixties who had severe chest and abdominal pain from a bowel obstruction that had ruptured her colon, caused her to have a heart attack, and put her into septic shock and renal failure. I performed an emergency operation to remove the damaged length of colon and give her a colostomy. A cardiologist stented her coronary arteries. We put her on dialysis, a ventilator, and intravenous feeding, and stabilized her. After a couple of weeks, though, it was clear that she was not going to get much better. The septic shock had left her with heart and respiratory failure as well as dry gangrene of her foot, which would have to be amputated. She had a large, open abdominal wound with leaking bowel contents, which would require twice-a-day cleaning and dressing for weeks in order to heal. She would not be able to eat. She would need a tracheotomy. Her kidneys were gone, and she would have to spend three days a week on a dialysis machine for the rest of her life.
She was unmarried and without children. So I sat with her sisters in the I.C.U. family room to talk about whether we should proceed with the amputation and the tracheotomy. “Is she dying?” one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.
[…]The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.
Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
Creed enters people’s lives at a strange moment—when they have understood that they have a fatal illness but have not necessarily acknowledged that they are dying. “I’d say only about a quarter have accepted their fate when they come into hospice,” she said. When she first encounters her patients, many feel that they have simply been abandoned by their doctors. “Ninety-nine per cent understand they’re dying, but one hundred per cent hope they’re not,” she says. “They still want to beat their disease.” The initial visit is always tricky, but she has found ways to smooth things over. “A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.’ ”
The article looks at how hospice care is “helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.” Gawande points to a study that showed that doctors are actually far more likely to overestimate a terminally ill patient’s survival time than to underestimate — and that’s when they’re willing to make a guess at all, which they are understandably reluctant to do. No one wants to talk about death, and patients are liable to feel betrayed by a doctor who tries to get them focused on quality over quantity with the time they have left. Gawande knows this from experience as well as from statistics.
The article is long and often grim, but very much worth reading and pondering. I was struck by Gawande’s reference to Stephen Jay Gould, who argued in his 1985 essay “The Median Isn’t the Message” that “it has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity.” Gould preferred to rage against the dying of the light, and that worked for him — he survived a grim cancer diagnosis. But, Gawande says, “The trouble is that we’ve built our medical system and culture around the long tail” — that is, around the thin possibility of survival. “Hope is not a plan,” Gawande writes, “but hope is our plan.”
The money wasted on ill-advised end-of-life-care — colossal though the sums may be — ought not to be the main focus of discussion. It will have to be talked about, of course, but that framing of the issue is disturbing and divisive. Before we get to that, we should be talking about the patients’ interests, as those interests would be judged by patients themselves, given all the facts.This is not about death panels. It is about patients’ rights.
I’m probably going to have a lot of thoughts about this Atul Gawande piece on hospice care, but here’s a slightly off the wall question: how much better off are patients now that doctors don’t lie to them? My understanding is that in the late nineteenth and earlier twentieth centuries, and possibly right up through the fifties and sixties, doctors routinely lied to terminal patients. That’s changed, partly due to changing cultural views about this sort of paternalism, and partly, I suspect, because we can somewhat extend peoples’ lives by doing many unpleasant things to them. Since no one would put up with this unless they knew they were dying, we have to tell them they’re dying.
Gawande’s piece, however, makes a pretty credible argument that a lot of the things we do are next to useless, prolonging neither quality nor quantity of life. If that’s the case, couldn’t one possibly argue that we’d be better off if more doctors lied, made us comfortable, and let us enjoy our final days without constantly entertaining thoughts of impending death?
I don’t like public paternalism, and I’m not much fonder of the private version. But I’m genuinely curious as to what sorts of benefits people think we gain by knowing for certain that death is coming. We romanticize the good death, but from what I understand, death has almost always been nasty and brutish, whether long or short. How is it improved by knowing it’s coming? I haven’t had a lot of relatives die, so I’m sure I’m missing quite a lot. I’m hoping my readers can fill me in.
Heather Horn at The Atlantic with a round-up
I want to talk about death panels here, and the difficulty we had in even assuring that doctors are paid for having a conversation with patients about end-of-life options, but I don’t want to recast this as a political argument. The problem is, as with many things in medicine, a question that is terrifying intimate also has enormous public policy implications, as the last year of life is incredibly expensive, and it’s paid for by Medicare, which means it’s paid for by taxpayers. This is a difficult enough conversation to have without tossing politics and economics into the mix, but they’re present whether we want them there or not. And so we’ve responded by ignoring the question, shouting it down when it comes up, and paying whatever’s necessary to avoid a discussion we don’t know how to have. That’s not just a bad solution for taxpayers, of course. As Gawande says, it’s a bad solution for patients, their families and their doctors.
Update: I think it’d be useful to offer people a refresher on what the ‘death panels’ actually were.
Toward the end of his piece he mentions a study Aetna did with hospice care. In one study, Aetna allowed people to sign up for home hospice services without giving up any of their other treatments. Result: lots of people signed up for hospice care and ended up consuming less traditional care. In the second study, more traditional rules applied: if you signed up for home hospice care you had to give up on traditional curative treatments. Result: pretty much the same.
What was going on here? The program’s leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough — just talking.
The explanation strains credibility, but evidence for it has grown in recent years.
I guess maybe I’m just weird, but this explanation doesn’t seem to strain credibility in the least. It’s exactly what I’d expect. Obviously there are lots of different people in the world and they have lots of different dispositions, but I’d guess that there’s a huge chunk of them who are basically just scared when the end comes and mostly want to understand what’s happening. Having someone take the time to explain — to really explain, so that they really understand — probably goes a hell of a long way toward making them feel better. And once they understand that what they’re feeling is, under the circumstances, fairly normal, a trip to the ICU doesn’t really look so inviting anymore. What’s so hard to believe about that?
I should say that the thing that struck me at once about the Gawande essay was how close the case he writes about in the beginning is to the situation my sister Ruthie faces. It’s almost eerie: Gawande’s patient was a young woman who never smoked, who had the same kind of lung cancer my sister does. One big difference, at least at this point: Ruthie’s cancer is responding well to chemotherapy.
Yet the moral questions Gawande’s essay raises are very much part of what my sister and the rest of us in our family are facing. As I’ve written before, Ruthie made a decision at the outset not to know what her chances of survival were, or too many details about her illness. She said she couldn’t do anything about it anyway, and all that would do was sap her will to resist. She put herself into the hands of her doctors, and said, “Just tell me what to do.”
But absent a cure, that strategy can only work for so long, and anyway, it puts enormous pressure on the doctor. My worry all along in this is that Ruthie will be so focused on beating this cancer (as the woman in the story was) that she will fail to make preparations for what should happen in the event that the tide of the battle turns. I cannot imagine what I would do in a similar situation. I know what I’d hope to do, but I really don’t know what I would do. When do you decide enough is enough, and it’s time to turn to hospice? (And let me be clear: my sister is not at that point; she’s doing pretty well, thank God). How do patients and their families muster the courage to say, “That’s it, there’s no point in this. Let me enjoy the time I have left”? The tricky thing is, we all hope and pray that this decision won’t be put to Ruthie, that she will beat the odds; we all have an emotional investment in her fighting
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