If you haven’t already, go read Atul Gawande’s New Yorker article “Letting Go.” As a surgeon, Gawande knows how doctors tend to death with terminally ill patients, both because of their training and their ordinary human tendencies. As a writer, he knows how to weave together personal stories and explanations into a seamless portrait of our medical system’s dysfunctional approach to death. Here’s one of his snapshots:
Recently, while seeing a patient in an intensive-care unit at my hospital, I stopped to talk with the critical-care physician on duty, someone I’d known since college. “I’m running a warehouse for the dying,” she said bleakly. Out of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the I.C.U. for the second time in three weeks, drugged to oblivion and tubed in most natural orifices and a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone, and a fungal pneumonia that arises only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheotomy, and she had mentioned that she didn’t want to die that way. But her children couldn’t let her go, and asked to proceed with the placement of various devices: a permanent tracheotomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.
Gawande devotes much of the article to the alternative to this kind of drawn-out suffering. He follows hospice nurse Sarah Creed on her rounds, and is initially surprised to find Creed coaching Lee Cox, a patient with congestive heart failure and pulmonary fibrosis, on steps that will prolong her life:
Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course?
“That’s not the goal,” Creed said. 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.
The solution isn’t as simple as providing palliative care to all patients with terminal illnesses, though that would probably help. Part of the problem is that it’s hard for patients, their families, and doctors to talk about dying. Gawande notes that in a distribution of survival times following diagnosis of an incurable disease, most patients may live less than a year, but there can be “long tail” that includes people who survived for several years. We all want to focus on the possibility that we (or our loved ones, or our patients) will be the fortunate outliers – but if we focus exclusively on that slim chance, it can cause a lot of pain:
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.
There was, actually, a plan to give people an option besides hope alone. When America’s Affordable Health Choices Act of 2009 (HR 2300) was introduced in the House last year, it included a provision that would have allowed Medicare recipients to get advance care counseling from healthcare practitioners – if they wanted such a service, it would be covered by Medicare (though not more than once within five years). Opponents of the healthcare legislation distorted this into the infamous “death panel” lie, and the provision didn’t survive. Gawande gives this a parenthetical reference, but I think it’s worth highlighting.
The article mentions some programs that have managed to reduce ER and ICU use and improve patient satisfaction by promoting palliative care or advance care planning. I’m hopeful that at least some parts of our fractured system will eventually decide to save money by putting more resources into end-of-life care that focuses on quality of life rather than just quantity. But, between this article and Katy Butler’s New York Times piece about her father’s pacemaker, I’m also realizing that I should have some of these difficult conversations with my family members, so that when the time comes we can tell each other’s doctors about what we want from our last days.