Doctor decries the way we approach the end of life

It may be the fact that Atul Gawande is a doctor - a Harvard doctor, yet - that draws readers to his books on our flawed medical system.

But he wouldn't make the best-seller lists if he wrote - or thought - like most doctors.

This is a guy with one of those renaissance-man resumés that makes even quite accomplished people look like slackers. Stanford undergrad. Rhodes scholar studying philosophy. Health-care adviser to President Bill Clinton. Medical degree and master's in public health from Harvard. Writer of four books and many New Yorker articles. MacArthur fellow. Surgeon. Founder of a lab that studies health quality. Now, after working on a PBS Frontline segment on his book, he's learning filmmaking. He's 49.

What seems to hold all that together is, obviously, a fine brain, but also relentless curiosity, an eye for story, and an attraction to complex problems. What sets him apart as a writer is his ability to make what he's learned seem simple. Or at least simpler.

His latest topic - aging and dying in America - is immense. In Being Mortal: Medicine and What Matters in the End, Gawande tackles the joyless way many people live in their later years and the excesses of medicine that many endure in their final months and days. The 263-page book interweaves stories about his own family and patients with reporting on how we die, trends in housing for the elderly, and the value of geriatricians and palliative-care specialists.

Gawande - pronounced guh-WAHN-dee -is scheduled to speak this week to about 2,500 doctors and nurses at a joint meeting of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association at the Convention Center. (The meeting is aimed at medical professionals and students. Registration costs $205 and up.)

The book is selling well - it's the No. 1 nonfiction title on the New York Times best-seller list - but it is unlikely much of what Gawande says in it will be news to this crowd. Asked by phone what he would tell the pros, Gawande laughed and said he was still figuring that out.

"At one basic level," he said, "it's, 'Thank you, and why the hell aren't people listening to you?' "

Gawande's book, which includes some material previously published in the New Yorker, is partly a personal journey: a doctor discovers he has been seeing only a fragment of the medical picture as his wife's grandmother declines with age and his father, also a physician, copes with a fatal cancer.

Gawande the surgeon has focused on keeping people alive. As he explores what aging and disability are really like, he sees that he has shied away from talking with his patients honestly about the problems he can't fix.

Asked how someone steeped in medicine and health policy could have been so naive, he referred to the first line of the book: "I learned about a lot of things in medical school, but mortality wasn't one of them."

Many doctors go into medicine because they like the idea of saving people, he said. He did, too, but he was soon troubled by suffering he was unable to relieve.

Still, his perspective was limited. "Your glimpse of people's lives is the glimpse you get in a 30-minute office visit," he said. "That's not their real life."

Researching the end of life like a reporter took him into houses, nursing homes, and assisted-living facilities, places where most doctors don't go. Seeing firsthand the tough decisions his family had to make added to the picture.

"I'd not seen what it was like to be the husband dealing with the wife who couldn't eat anymore," he said, "or the daughter with the father who's become a quadriplegic."

He had set out to write about the end of life but realized the need for better communication about what people want and need starts much earlier, as age and debility begin to erode independence. Their children want them to be safe, Gawande said, but what older people want for themselves - what we all want for ourselves - is autonomy and a sense of purpose.

These attitudes should have been entwined in medical decision-making, but they weren't. Faced with choosing among eight or nine chemotherapy regimens for his father, Gawande realized he needed more information. How would each affect his father's desire to maintain mental clarity and function? Ultimately, his father's condition declined, and he had no chemo at all. Soon, it was time for hospice.

If there's one message Gawande would want people to take from the book, it is that doctors need to talk to their patients, and we need to talk to our families about what really matters at the end. "People have priorities beyond just living longer, no matter what," Gawande said. Those priorities vary. "The most reliable way of knowing is to ask them."

Gawande comes across as low-key and serious, not flashy like, say, TV's Dr. Oz. He came to this topic after studying medical quality. He is big on checklists as a way to reduce errors in complex care. So, of course, he asked experts on patient communication for key actions to check off.

One of the suggestions that stuck with him is to talk less than half of the time while he's with a patient. He was horrified to learn he was talking close to 90 percent of the time. A palliative-care doctor told him, "You're an explainaholic."

Once he talked less, he saw what patients need is "some opportunity to explain themselves, what their fears are . . . what they're willing to sacrifice, what they're not willing to sacrifice."

He has become more comfortable with the topic and is hopeful others will too as more people witness hospice and palliative care. Each of his own three children, now teenagers, has been exposed to at-home hospice through a friend or teacher, he said. "That idea that there's someone in the neighborhood who might die and in their home" has led to questions and good discussions at his house. More of that, in other families and other doctors' offices, will bring the barriers down and, he hopes, drive policies that will restructure long-term care and how we pay for care of the sick and elderly.

Gawande does not spend much time in the book on the nuts and bolts of how to change end-of-life care. He thinks better care will flow from awareness, talking about what makes life meaningful and what reduces suffering when time is short. The "fundamental barrier" to change, he said, is not money, but "tremendous anxiety on the part of clinicians and family members."

Ariadne Labs, his research center with Brigham and Women's Hospital and the Harvard School of Public Health, is an effort to provide tools that improve care at key points in people's lives. Those include childbirth, surgery, and, now, serious illness.

A current project is testing the impact of routinely discussing end-of-life goals with patients at risk of dying in the next year.

Susan Block, a Harvard palliative-care specialist who heads that study, said it would involve 400 patients, 400 family members, and 90 oncologists. "This is one of the largest palliative-care trials of a complex intervention," she said. It likely will take three years to complete.

She said Gawande's interest in checklists made her rethink what she does. She was also impressed with his ability to illustrate how aging and palliative care's emphasis on non-medical goals flow together.

It is true, she said, that others have already said much of what's in the book, but she thinks Gawande framed the information differently and found a way to make it especially moving.

"Atul has a unique voice and a way of telling stories and synthesizing information that is quite extraordinary and compelling to people," she said.

Gawande thinks sales of the book - even as Christmas presents and airport purchases - are a sign people are ready to talk more openly about death.

Where will he focus his energy next? He was cagey about that. "I can't give it away yet," he said.

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