Friday, August 6, 2010

Ars moriendi

Atul Gawande has a thoughtful essay, titled "Letting Go: What Should Medicine Do When It Can't Save Your Life," in the August 2nd issue of The New Yorker.

In it, he considers end-of-life issues and reports on the benefits of hospice and palliative care. Here is a finding that seems important:

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.

Gawande notes that hospice, both in principle and in practice, departs from the rest of medicine today - for example, enabling people to live their everyday lives, keeping them comfortable, talking and listening to them about their wants and needs. I find it telling that an oncologist interviewed in the article admits that it is "easier" for her simply to prescribe another round of chemotherapy, even a second or third-line drug that in all probability will make no difference, than to have a conversation about the fact that a patient will die.

Yet, he notes also that doctors and nurses can learn what to do and how to do it and to become practiced in it. Susan Block, a palliative care specialist, tells Gawande: "A family meeting is a procedure, and it requires no less skill than performing an operation." She notes that words matter, so that instead of saying, "I'm sorry," you say, "I wish things were different," and instead of asking, "What do you want when you are dying," you ask, "If time becomes short, what is most important to you?"

Gawande, a doctor's doctor, is thinking aloud in this piece about how our ability to do (e.g., develop new therapies that might not cure disease, but at least can prolong life) outstrips our ability to make sense and esp. meaning of it all: In other words, cultural and social challenges for the individuals deciding what their lives (and deaths) are all about, including for the doctors and nurses.

This is, in fact, a point that I feel is important to make in my class on Medical Anthropology. So, I might consider assigning this article. The issues and the reporting here already have been published widely - from the journalist's perspective, there is no really new news here - but the article is compelling to read, in part due to Gawande's assured and compassionate voice, and in part due to the heartbreaking story that frames it: Towards the end of her pregnancy, an otherwise healthy woman in her early 30's learns that she has an aggressive cancer. She delivers her child and immediately begins what reads like a painful and unending course of grasping at straws. Yet, who could blame her? I thought about Beanie and Bubbie, and I suddenly became conscious of my own breathing.

The point I present to my students is that perhaps medicine as we take it for granted in our society both succeeds and fails at what matters to us. Gawande points out that there is "a still unresolved argument about what the function of medicine really is" - which I suggest has to do with the aggressively ahistorical stance that medicine itself takes. The only history that seems to exist is a path of "progress." There seems little perspective that as medicine "progresses," our experiences and expectations also change - and that progress and change are not the same. It seems like resorting to "heroics" in medicine might have meant one thing when death was what Gawande describes as "typically a brief process" of hours or even days or weeks, but it seems to mean another thing when it involves months or even years. Is that not enough time to consider living, and if so, then what is? Is it then not worth remembering that living itself is the process of dying?

Here is what Gawande says to the doctors:

We are increasingly the generals who march the soldiers onward, saying all the while, "You let me know when you want to stop." All-out treatment, we tell the terminally ill, is a train you can get off at any time - just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come - and to escape a warehoused oblivion that few really want.

I would add that this is not the responsibility only of the doctors and nurses, though they clearly can have one to their patients, and they might be able, in fact, to serve as the agents of change.

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