A cheerful start to spring break would be a little obvious, don’t you think? Instead, here is an article by Atul Gawande about hospice care:  http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande#ixzz1FvNCGNpM

The article is long, so here are a few excerpts that stood out to me. First on the role of hospice and the distinction between prolonging versus improving a person’s life:

“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.”

This second excerpt is about Stephen Jay Gould, who was diagnosed with abdominal mesothelioma, which statistically has a survival rate of about eight months:

“Gould was a naturalist, and more inclined to notice the variation around the curve’s middle point than the middle point itself. What the naturalist saw was remarkable variation. The patients were not clustered around the median survival but, instead, fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median. This is where he found solace. He could imagine himself surviving far out in that long tail. And he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer that was unrelated to his original disease.

“I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

And finally, how medical science makes it impossible to give up hope completely, even when the outcome is all but assured:

“We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?”

The overall message is that talking about death is difficult, but the skirting the issue only makes it harder in the end. Patients look to their doctors to guide them through the process of staying alive, not to help them come to terms with death. Meanwhile the doctors themselves are only human and they hardly want to be the bearers of bad news. Gawande describes getting caught up in the optimism of his patients, of questioning whether he has any right to destroy their tentative hold on hope . It’s easier to give in to that sense of possibility; the idea that this patient is the one holding the winning lottery ticket. It’s much harder to reach past that optimism and change the conversation from, “What do I do next?” to “Where do we draw the line?”

I take this article as a warning. Away from the immediacy of such a confrontation, I like to think that I would take a sympathetic but practical approach to talking about death. The trouble is, death is not practical and neither are the emotions that go along with it. The situation Gawande describes is all too familiar; that desire to turn away from an uncomfortable topic toward a more agreeable fiction. I could easily see myself unwittingly embracing the false hope of a patient determined to fight to their very last breath. It’s the stuff of great stories and no one wants to play the part of the doctor who gave up before the fight was over.

In the end, though, it is the doctor who needs to be the one who doesn’t succumb to the convenient fiction. Hope is a good thing in medicine, but false hope will make the reality that much more difficult to bear. I hope that by anticipating the difficulty I will face when talking about death, I can prepare myself not to shy away.

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