Facts So Romantic

Being Mortal: Atul Gawande’s Rx for How to End Our Lives

 

Rose Lincoln / Harvard News Office

Atul Gawande sits across from me in a cafe in Berkeley, California, sipping an Izze fruit drink and trying to catch his breath. He just came from an appearance across the bay, in San Francisco, and is soon headed to a radio interview down the street, followed by a drive via the Golden Gate Bridge to Marin County, where he’ll give a reading of his new book. Then it’s off to the airport for a red eye to Chicago, where he’ll start over again, perhaps a bit blearier in the eyes.

Gawande—a Harvard surgeon and researcher, New Yorker staff writer, and author of four highly acclaimed and best-selling books—is a man on an existential mission of sorts. His newest book, Being Mortal: Medicine and What Matters in the End, is his most ambitious project to date, tackling what perhaps is (though it may be hard to see during the worst Ebola outbreak in history), the thorniest medical and public-health question we have to face: What does it mean to live a good life, and is it worth sacrificing longevity for quality and meaning, even during our frailest or sickest years?

Q: You seem to be packed with engagements to discuss the book. What’s behind that?

AG: Compared to my prior book, I do think it’s different, but not by design. There’s been a lot more attention and a huge amount of word of mouth. The book has already gotten as many comments on Amazon in its first days since its release as the Checklist Manifesto did in its entire first year. I think it’s speaking pretty readily to concerns a lot of people have both inside and outside of medicine. So I’ve gotten more people asking for time. It’s a more ambitious project than books about how the system works. It took me twice as long to write this book as the last book.

Q: What illusions about life and death and health do people carry with them toward the end of their lives?

AG: The idea that a good life is a healthy life is kind of such a basic idea that we take it for granted. If you go back to the 19th century it wasn’t like that at all. People’s awareness that life is fragile was constant, because the risk of death was not necessarily associated with being old. Age 5, age 20, age 40, you had a high risk of dying. That constant sense that life was fragile led people to value health, but also led people to believe that a good life was bigger than just being healthy and surviving in the world.

Q: What illusions do doctors have about death and dying?

AG: If you ask a doctor he or she will say, Of course, I’m not trying to extend life regardless of what happens—to take a corpse and trying to keep that heart beating an extra minute longer. Now, our behavior is often not that way—and it’s for very complex reasons—but if I scratched a little further, and said, “Your number-one goal is people’s health, right?” 80–90 percent will say, “Absolutely. A good life is a healthy life.” But most people have a larger idea of well-being than ours in medicine. That goes beyond being healthy and sometimes [people are] willing to sacrifice being healthy for the sake of these other things.

I tell the story of my father—he had brain cancer that’s leaving him increasingly quadriplegic and in pain. He is becoming unresponsive, ends up in the hospital. His own colleagues in his own hospital, after giving him [medicine] to reverse [the deep sedation from his] narcotics, wake him up. And they won’t give him pain medication even though he says, “I don’t care if I don’t wake up.” They give him tiny little doses of medicine that don’t touch his pain because they’re afraid he’ll become unresponsive again. It is exactly this point, that somehow, we can’t compute that his priorities for the time that he has left are: comfort.

One other thing that bothers me is that we try to frame these options in the following way: “We can do everything or we can just keep you comfortable.” Just “keeping you comfortable” is a really tiny, shallow idea of what kind of life you can offer. What we’re trying to say is that we will use our capabilities to achieve what priorities we have, and just have a good day today and that can mean just take away my pain. For my dad, it was, “Try to take away my pain and then if it’s possible, try to make it possible so I can still Skype with my friends and my family in India, you know or have a dinner party.” He still Skyped even the day he died.

Q: What American values or cultural norms are you calling out in this book about death and dying?

AG: I dig into the concepts of autonomy: In [our] society we really value and admire this. In the medical world, [it’s] the feisty patient that drives us crazy, and where we feel conflicted is when they are not pursuing the goals we feel should be their priorities.

Q: Is there an implicit criticism here of a certain way of thinking? I’m referring to books and other media focused on beating aging or staying young indefinitely—books that Suzanne Somers wrote, or magazines like Life Extension, or even the scientific views and research of Aubrey De Grey (a well-known advocate of extending the human lifespan).

AG: I am challenging that notion. Those books are marketing to people who are still pretty healthy and independent and who fear that they’re going to lose all of that. If we think a good life is an independent and healthy life and that if my health suffers—that therefore I won’t have a good life—well, then, it’s understandable that this is the market people go for.

What I want to propose, instead, is that we use our medical care and our social resources to help people achieve the best they can be even if they’re sick or frail or disabled, and regardless of the effect on their length of life. There is a set of options for this group of people that we fundamentally miss out on.

The one group of people who are not happy as they get older are people who are institutionalized. They live in assisted living or nursing homes. They have the same health goals, but those places say your health and your safety come first, and you don’t have choices like, “I want a beer,” or, “I’m on a pureed diet, but I really want a cookie.” Beyond those choices, people want to stay connected to their friends. Why, if people are confined to a wheelchair or having some memory issues, can’t they go out and be with others? You meet people in those institutions and the first thing they say is, “When can I go home?”

So you have to stop paying attention to time and pay much more to how we use our capabilities to ensure those things that you do not want to sacrifice are preserved as much as possible.

Q: What new values are you proposing in the book?

AG: I’m hesitant to call them a new set of values—perhaps an alignment of values that’s been missing. Medicine’s view, by focusing on health and safety, has been very narrow. And it’s allowed us to avoid the harder societal questions of what a good life is. We say, “I’m just here to help you be healthy and then any choices you make about not being healthy, hey, that’s your problem and choice. It’s not my business.”

We almost have no concept of what a life worth living is. But because a life worth living takes you to 83 if you’re a male and 86 if you’re a female, we do have to engage in a discussion about what a life worth living is and what we are going to use our technological capabilities to fight for. I am arguing for a new willingness to engage in values.

Q: What’s the main philosophical/spiritual lens you bring to this book?

AG: Interesting. I haven’t thought about it too deeply. I don’t think it’s a metaphysical or spiritual one, though I close the book scattering my dad’s ashes on the Ganges River. He wanted to have his ashes spread and achieve nirvana. I do believe that my father lived for something bigger than himself. He saw that as family, community, and god. It was my duty as his son to help him achieve that.

Increasingly, I think it’s around this idea of loyalty, that people live for something larger than themselves, and helping people to identify those goals. People’s loyalties are different. The most common answer people give [about] what their priorities are, besides living longer at any cost? Doctors think it will be avoiding pain or being able to be more independent. The highest up there is [actually], being at peace with God.

For me, what I’m living for is different: community, society, and the relief of suffering and the opening up of people’s potential. For others it’s their children, or going to war for their country. The philosophical underpinning is that I think we need those things, and there is an intrinsic need to serve those kinds of loyalties. Helping people choose and find those loyalties when they’re capable of it is essential. To help people find and maintain it, even when people are cognitively impaired. In the book I discuss that giving the frail and elderly a pet to take care of can give even cognitively impaired people purpose.

Q: In the book, you discuss recurring nightmares you have about dead patients. Has writing this book cured you of them?

AG: I stopped having nightmares about dead bodies I would find in my car or in my house a long time ago. I got used to them. But [then I got] that sense of feeling incompetent about those big questions that patients would ask me—“And what should I do now?” That’s been a big change for me. I’ve started to switch from [feeling] incredibly incompetent in those situations to feeling like they’re some of the most gratifying experiences I’m having now. Even though I can’t necessarily fix the situation, I know what to ask by learning from all of these people I talked to. I’m still learning, still practicing, and making my effort.

I’ve done more than 3,000 thyroid operations. I’m really glad to do number 3,001, but it’s not the same joy as finding someone who has a really complex situation and you’re able to walk them through it. That’s the next stage for me.


Rahul Parikh is a physician and writer in the SF Bay Area. www.rahulkparikh.com

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