'I think we're finally past the death panels'

Dr. Atul Gawande is a surgeon, writer and public health researcher. He practices general and endocrine surgery at Brigham and Women's Hospital in Boston and is a professor at Harvard Medical School and Harvard School of Public Health. He also is executive director of Ariadne Labs, a center for health systems innovation, and chairman of Lifebox, a not-for-profit focused on making surgery safer globally. He has been a staff writer for New Yorker magazine since 1998. He previously wrote The Checklist Manifesto, and his latest book is Being Mortal: Medicine and What Matters in the End. Modern Healthcare Editor Merrill Goozner recently spoke with Gawande about how end-of-life care and long-term care can be improved through better end-of-life conversations between clinicians and patients. This is an edited transcript.

Modern Healthcare: Why did end-of-life care become so important to you?

Atul Gawande: I've been interested in the problems we have a hard time with. They range from dealing with our cost problems to understanding why we make mistakes. But a recurring theme as I've gone through more than a decade in medical practice is what it means to be good at taking care of people whose problems we cannot fix.

Our priority is keeping people healthy, but what happens when they can't be healthy? It came home to me not only with my patients, but when my dad developed brain cancer.

MH: What are the professional issues and family interactions that make this such a difficult issue?

Gawande: My father was a surgeon and my mother is a pediatrician, and we still had a hard time grappling with how to make good decisions. There are fundamental things that we fail to understand. No. 1, people have priorities besides just living longer. They have larger aims that might involve protecting their cognitive function, wanting to be home, or achieving certain life goals. The second thing is, the most reliable way to find out people's priorities is to ask them. People who have these conversations before a crisis comes tend to stop aggressive therapy when it's become purely toxic. They're more likely to enter hospice or choose therapies that enable them to be functional for longer. They have less suffering at the end of life. And the irony is that in many cases, they live longer. And we found exactly that when I tried to use those same techniques in our family conversations with my father about his priorities as his cancer was advancing.

MH: What do healthcare providers need to do to change end-of-life care?

Gawande: We should have some competence in dealing with these situations. What kind of life are we fighting for people to have, and does that match the kind of life they want? Those skills often involve some degree of practice. We also need time to have these conversations. Currently, we don't reward doctors or others for taking that time. We don't see it as a failure when we have patients reaching the end of life who've never articulated their goals or never gotten a healthcare proxy. I don't think we understand what some of those skills are. People who are really good at these conversations are more likely to ask questions than just supply facts. They tend to talk less than half of the time. When I was told that, I suddenly realized that I'm having conversations where I'm doing 90% of the talking. That's not a very successful conversation.

MH: Why did you also take on the issue of long-term care?

Gawande: You realize that people's priorities about what they value when they're facing illness and constrictions on quality of life also come into play in institutions like nursing homes. We want these people to be healthy and safe, but the focus on safety can be at the exclusion of larger ideas people have about well-being.

When you visit a nursing home, somebody might say, “One of the great joys of my life is taking care of my dog.” Well, you don't get to do that in a nursing home. But I visited a nursing home where they brought dogs, cats and birds. The facility had to apply for waivers from New York state regulations. It had to combat cultural inertia. Who's going to clean up when the dog craps on the floor? It was never a problem of cost. It was a problem of culture and imagination to realize that allowing people, even though they were disabled, to have larger purposes like caring for animals, being able to see friends, go out to a movie, do certain kinds of work, or be able to go to the refrigerator even though they might eat unsafe foods, like a diabetic drinking a soda. These kinds of freedoms are essential to what we want.

One nursing home reformer said to me, “Safety is what the kids want, but autonomy is what we want for ourselves.” We've not built institutions that think beyond keeping people safe even if they are passive, lonely and bored. It doesn't take that much when we start to imagine what their priorities are. Whether it's at end of life or in these nursing homes, the questions are the same: What are you willing to sacrifice in your life and what are you not willing to sacrifice? Our job is to ensure we're abiding by those understandings.

MH: Do you have any suggestions for financing and regulatory changes that would enable healthcare organizations to do more end-of-life counseling and patient-centered care?

Gawande: It's not enough to simply give doctors more money or more time talking to patients. We have to have effective systems. For example, at the Dana-Farber Cancer Institute where I work, we're running an experiment where we ask the palliative-care department to track the patients who are at highest risk of dying in the next six months. We ask them to see whether their doctors are having end-of-life conversations and provide training and coaching for the doctors to improve their skills at having successful conversations. We have found that about 80% of the clinicians have been open to participating in this program and have gotten real value out of them. The vast majority, with about two reminders, will initiate conversations with these high-risk patients.

The hard part is getting institutions to support palliative-care teams or geriatricians doing population management for the end-of-life and aging populations.

MH: Are there continuing political roadblocks to this type of work?

Gawande: The primary block is not political, it's our imaginations. When Sarah Palin referred to doctors having these conversations with patients as “death panels,” she was suggesting that physicians were going to be taking stuff away from people. And average people were not convinced that those conversations were really about helping them. I'm not sure the average physician even understood what a real end-of-life conversation is. I didn't, until I began investigating this.

On my book tour, I've made a point of going to some very conservative communities like Wichita, Kan. In Wichita, there was no specter of death panels. What people there talked there about was the problems they saw in their elderly parents' care, how to assist with living and how to reduce suffering. I think we're finally past the death panels.