The New Health Dialogue

Since Atul Gawande’s New Yorker article on end of life and palliative care was published in August,  I’ve had numerous conversations with people in the palliative care and geriatric worlds about why it had such an impact. (Beyond the obvious, that he’s a superb writer with a superb platform and a compelling topic.) I don’t think it was so much that he wrote about La Crosse, Wisconsin’s success in getting people to document advanced care plans or that Aetna is allowing some patients “concurrent care” -- letting them get hospice without having to give up their chemo.  I think the impact came because he took ownership. This brilliant and eloquent doctor said this is a situation I am not good at. This is something I don’t know how to do. This is something that we need to do better.

Atul was the keynote speaker Tuesday at the Agency for Healthcare Research and Quality annual conference in Bethesda. He covered a lot of ground  -- everything from the Oakland A's to battlefield surgery -- but I want to focus on what he said about palliative care, both because it’s a topic I write about a lot and because I was struck by what he said, how he said it, and how it seemed to resonate internally with him, as a policy problem-solver and as a surgeon: what does it mean to care for a patient when there is no cure?

“I was not doing a good job,” he said, recalling the 34 year old lung cancer patient, the mother of a newborn, whose tragic story he shared in his New Yorker article. “I did not know how to tackle it.”  Neither do most other doctors, most other hospitals, most parts of our health care system.

All too often, our societal debates about care for seriously or terminally ill patients are framed as an economic transaction, a tradeoff between time (life prolonged) and expense, he said.  But so much of that costly care doesn’t even really benefit the patient, doesn’t add months, let alone years, of life.  So the whole premise of the tradeoff isn’t the right starting point.  Palliative care, he learned, creates another way of thinking about that care -- about how does the care fit into the patient and family goals, values, desires, even their fears.

Not being all that accustomed to having these kinds of conversations in his surgical practice, Gawande did exactly what you might expect him to do. He created a kind of communication checklist, helped by Dr. Susan Block, a palliative care specialist at Dana Farber, who is also an influential figure in palliative care training and education. He learned to ask the patient “do you know what your prognosis is?” He asks them about their fears and concerns. He asks them about goals. And he asked them about tradeoffs -- not in time versus expense, but time versus suffering.  I think it is fair to say, although he did not use these specific words, that he is asking them how they want to live, not so much how they want to die.

“It’s transformed the decision-making,” he said. “It’s really changed the way we are doing this.”

For many months after the "death panel" outrages of the summer of 2009, talking about palliative and end of life care seemed difficult, if not downright taboo, in Washington. It was, as I heard several doctors say, radioactive. I think Gawande's article may have made it safe to talk about again. That New England Journal article later that month, showing that lung cancer patients who received palliative care along with chemo actually lived longer than those who only got standard care, also helped.

A week or two ago I interviewed Dr. Susan Cohen, medical director for palliative care at Bellevue Hospital in New York, (coincidentally I met Susan Cohen a few years ago at a palliative care seminar led by Gawande's colleague Susan Block) for a couple of articles I've been working on. For her patients -- largely poor, largely immigrant and many non-English speaking -- the conversations never stopped. "They are worried about how are they going to get back to Ecuador, or what will happen to their restaurant job if they are sick. Sarah Palin doesn't come up," she said. But she too has seen a change in her own hospital since the Gawande and the NEJM lung cancer articles came out last month. It's a change from within. From the physicians in her hospital. From the residents. From the medical students. They want to learn what she, and palliative care, has to offer. For their patients. And for themselves.