Atul Gawande is no stranger to death and dying. In his many years of experience as a surgeon, he has guided patients and families through end-of-life experiences with regularity. But even he admits that, for years, he had been getting it wrong.
As he writes in “Being Mortal,” “I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering.”
Gawande traces the history of the modern-day nursing home and how the assisted living movement has changed the way we view our final years. He also tells the story of his father’s illness and eventual death, and the steps that he and his family took to allow him as much satisfaction and peace at the end as possible.
Gawande spoke by phone from his home in Boston in advance of his appearance on Friday as part of the Wisconsin Book Festival’s year-round programming.
Q: What drove you to write this book?
A: After 10 years of being a surgeon, I realized that neither I nor the health system I’ve been in were managing mortality very well. To add to that, my own father was diagnosed with a cancer in his brain stem/spinal cord. I felt like it was especially important to try to unknot why these issues are such a struggle and what could make things better.
Q: Where do you think we went wrong?
A: In many ways, it’s a societal matter. We’ve had the breakup of the large multi-generational family, where everybody took care of one another. A lot of that was because we wanted it to break up. People wanted independence. But when you become dependent, when you’re frail or seriously ill, we didn’t really have a plan for that. Our plan for the last half century is that medicine will take care of that. Medicine is really good at problems that we can fix with technology and our capabilities. But we’ve never been good at dealing with the problems that we couldn’t repair, that weren’t going to go away. There’s no greater unfixable than aging and mortality.
Q: So then we end up institutionalizing our elders.
A: What ends up happening is that medicine’s values are not exactly the same as people’s values. Medicine’s values are that the highest priorities are health, survival and safety. For most people, well-being is bigger than just surviving. It’s bigger than just being safe and alive. Where the struggle comes is when people’s quality of life diminishes. Medicine’s default is to expect that people will accept anything for longer life without understanding that people have priorities besides just living longer.
Q: Is there anyone who’s getting it right?
A: The really interesting thing is that I didn’t feel like I was getting it right. One of the beautiful things about being a writer is I get to call people up and say, “Hey, can I talk to you?” I called up more than 200 patients and family members and said, “Can I hear about your experience with aging?” I interviewed and followed scores of palliative care doctors, geriatricians, nursing home aides, hospice workers. What I learned is there are people in places that were more successful than others in navigating these kinds of experiences of mortality. The ones who are incredibly good recognize that people have priorities besides just living longer. They also seem to understand that the most reliable way to find out what people’s priorities are is to ask. That is what we do not do. We simply don’t do it as clinicians, we don’t do it as family, and the result is real suffering.
Q: What are the questions that we can ask each other?
A: There are four questions that people who are really good at these conversations ask. One is, “What is your own understanding of your condition or your health?” Second is: “What are your fears and worries for the future?” Three: “What are your goals if your health worsens?” Finally, “What are the tradeoffs you’re willing to make in your life?” Or, “What outcome would be unacceptable to you?”
If you understand those answers, that provides a tremendous amount of guidance as a family, or as a clinician, or as a nursing home, about what really matters in people’s lives and what you want to preserve. We literally never ask.
Q: You admitted to being part of that problem. How has this awareness changed your practice?
A: Pretty fundamentally. One of the things I described is how the role of the doctor has evolved over the last 50 years. It’s pushed what I also feel my role is. Fifty years ago, we had Dr. Knows Best, the paternalistic doctor who just told you what you would do. We rebelled against that in the ‘80s and ‘90s, and what we began teaching is what I call Dr. Informative. Here are your options, here are the risks, the benefits, the pros, the cons; what do you want?
What people want is someone who’s more of a counselor, a guide, because they haven’t been in this situation before. They want to know something from your experience. What I find is changed is that I’m actually having to develop the discipline of talking less in my appointments with my patients. When I ask those questions I talked about, they end up telling me, “Here are the priorities that matter to me.”
Q: You write of your own family’s experience with these end-of-life decisions. Did you struggle with the decision to make your book personal?
A: Yes. I’m not sure my sister and mother exactly loved the idea. It opened a lot of wounds for them. Also, they have their own experiences, and this is very much my particular experience. But in the end they were incredibly supportive.
Q: You say near the end that life is meaningful because it’s a story. Have you thought about how you want your story to play out?
A: There are two parts of the story I would not want. One is that, when I become frail and need help, I don’t want that to mean that I can’t have purpose and accomplishments. Just because I might need help taking a bath or getting dressed ... as long as I can communicate and connect with others, that’s really important to me.
The other part is that endings do matter. I don’t want my ending to be like I’ve seen with some of my patients, where we take them into surgery and they expect to wake up and they never do. They never got to say goodbye. I want to be able to say a few things to my children and to my wife. I want to be able to know that the things I’ve started will be continued onward by others.