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Humane Endeavor


The surgeon and public health journalist on the gaps in healthcare policy, the sharp elbows of politics, and dignity in end-of-life care.

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Image by Tim Llewellyn

“Our health system is failing—on cost, coverage, safety, and value—because the complexity of healthcare itself has exceeded our abilities as individual clinicians,” Atul Gawande has said. Gawande has taken an active role in reimagining the practice of medicine not only as a lauded surgeon at Brigham and Women’s Hospital in Boston, MA, but also as a professor at Harvard University, an author of multiple bestselling books, and a staff writer for The New Yorker.

But before Gawande became a doctor and began to write about the power and limits of medicine, he worked in American politics. He joined Al Gore’s presidential campaign in 1988 and Bill Clinton’s in 1992, going on to become a senior health policy advisor in the latter’s administration. As the New York Times described, Gawande “became a key figure in…one of the most potent domestic issues propelling Mr. Clinton to the presidency: health-care reform.” Though Clinton’s proposal was defeated, “That collective effort,” Gawande argues, “laid the groundwork for what would pass about twenty years later.”

Medicine is where Gawande says he feels most at home. But his prolific reporting and writing reveal his continued engagement with not only the policies of healthcare but also the moral questions inherent in providing quality care. In his books Complications and Better, he grapples with how to improve as a surgeon in an environment where a rookie mistake could result in a patient’s death. In The Checklist Manifesto, he uncovers the ways in which complex procedures often fail and how something as a simple as a checklist can intervene for the better. For his analyses of the medical field and his groundbreaking health systems research, he was awarded a MacArthur “genius” grant in 2006.

Gawande’s latest book, Being Mortal, strives to answer the greatest medical question of all: How to address the one thing we’ll never be able to cure—mortality? As he explains in the interview that follows, “Simply prolonging lives at any cost consumes a huge amount of resources for care that people neither benefit from nor want.” Taking a critical look at current end-of-life care practices, Gawande examines what might be more efficient and humane alternatives to dealing with frailty and aging, and reflects on how this research has better equipped him as a doctor, as well as a son losing his father to cancer.

Gawande and I spoke over the phone last month about healthcare in the Clinton administration, what we’ve gained from the Affordable Care Act and what work remains, and the joys of Tolstoy and Oliver Sacks. Though our conversation touched on fraught issues of life and death, he approached these calmly, and with surgical precision.

Grace Bello for Guernica

Guernica: You say in your first book, Complications, that you were a student of philosophy and ethics. How did you transition from those interests to working in medicine?

Atul Gawande: Well, in many ways, the effort to study philosophy was my rebellion away from medicine. I’m the son of two Indian immigrant physicians, so the natural path for me would have been to become a doctor.

I ended up doing the master’s degree at Oxford in politics, philosophy, and economics while already having a seat in medical school. I was keeping that as my escape hatch. But my hope was that I might become a philosopher or something else entirely.

I drifted through a variety of different options. I ended up doing my thesis on race relations between Indians and the black community in South Africa. I went to work for Al Gore when he ran for president in 1988. Then I ultimately returned to medicine. It was mainly the place where I still felt most at home.

We’re never going to be omniscient, there is some knowledge that we will simply never achieve, and there are limits to what we will be able to do.

Guernica: In Complications and Better, you examine how easy it is for even skilled doctors and surgeons to make mistakes. What made you want to explore the fallibility of your profession?

Atul Gawande: I’m not entirely sure, except that it was clearly related to being uncomfortable with my own fallibility. I had been really interested in the idea of how we become competent and what we can do and what we can’t do. I read an essay years ago on the nature of human fallibility by two philosophers, Samuel Gorovitz and Alasdair MacIntyre. That essay laid out that there are two primary reasons people might be fallible, why we might fail to do what we try to do.

One reason is ignorance, that we have a limited understanding of the laws of the world—the physical laws that govern the world and of all the particulars of the world upon which those laws work. And then there’s ineptitude, meaning that the knowledge is available, but individuals fail to apply it correctly. Then they had a third source of failure, which is “necessary fallibility.” That is, we’re never going to be omniscient, there is some knowledge that we will simply never achieve, and there are limits to what we will be able to do.

The result of reading this essay was that, early on, I was very aware that we are the recipients of a huge amount of discovery over the last century. Medicine exemplifies this. And that has transitioned us from a world in which people’s lives were mostly governed by ignorance to one that’s constrained by ineptitude. A century ago, we didn’t know, for instance, what diseases afflicted us, what their nature really was, or what to do about them. And that has changed.

Now, competence is a major concern. How do we solve problems of ineptitude—including our own ineptitude—as one is trying to learn how to master new skills? This question has enormous resonance, even now, in the middle of the Ebola crisis. People are puzzling over what we’re really ignorant about, but even more so, what are the basic things that we know how to do but are not capable of doing? To me, that felt like a hugely important domain, whether I was working in politics or working in medicine.

Guernica: I wonder how the medical community has responded to your books and your pieces in The New Yorker over the years. In what ways has it embraced or rejected the criticisms that you’ve laid out?

Atul Gawande: I was worried about that, especially in those early days. I was writing as a resident. I was a trainee. I didn’t have very much standing, and I was concerned that people might say, “Who are you to be telling anybody anything about medicine?”

My stance, though, was one of simply saying, “Look, I’m thinking out loud. I’m puzzling through this and trying to figure out, What is my task as a doctor in order to improve and be more effective?” Or, for that matter, How can anybody who is grappling with great complexities improve and be more effective at what they are trying to do?

The reaction to my work was that, mostly, people sort of commiserated. They had their own advice and views. They said, “That’s not the real problem, here’s the real problem!” People were not drumming me out of the establishment in any sense. Ironically, I was all the more welcome. I wasn’t fired from the hospital—I was hired. I ended up becoming a professor. All these unexpected things happened that were partly related to my writing.

Guernica: That’s interesting. Some of the clinicians whom I’ve previously interviewed have been afraid to criticize their peers or the system.

Atul Gawande: I often had that kind of terror. I remember writing one of my first pieces for The New Yorker back in 1999, “When Doctors Make Mistakes,” about an error I made that nearly killed a patient. I offered some observations about the errors I had seen my professors and colleagues make.

Suddenly, this piece that I had gone back and forth on with my editor and had scrutinized down to the minutiae was about to come out. And I—I panicked. I called The New Yorker on the Friday before the issue was about to go to the printer. I asked the editor, “Can we just hold it for one more week?” I wanted to make sure that no one was going to freak out on me about this. I panicked, but it was fine. It was fine.

I still had those moments of alarm before Being Mortal came out. I still was very concerned about whether people would receive it with an understanding of my intentions and whether they would forgive the points that people might take dispute with.

At the time that I’m writing these pieces, I’m kind of oblivious to what the reaction might be. I’m just puzzling through and trying to find clarity. I’m also thinking about how to make this a story that anybody would want to read and whether I’m capturing what something looks like or feels like.

Guernica: I want to hear about your political work. You advised Bill Clinton’s presidential primary campaign on the subject of healthcare policy, and you went on to work on healthcare reform for his administration. What was that like?

Atul Gawande: You have to consider, when I started working for him, he was a primary candidate, one of seven Democrats running for president and not even in the top of the pack. And I was twenty-six years old [laughs]. I must have been way down on the list when they finally got to me and asked me to join in and help.

I was there as a facilitator, you know? They were not saying, “Atul, what do you really think about this?” It was, “Have you talked to everybody that you possibly could? Have you found out what their perspective is on this or that hot-button campaign issue?”

It was learning the politics of when you make your arguments and when you don’t, and when the cause is lost and when it’s not.

We also had to consider what our stance was going to be on healthcare reform. There were times when we were trying to figure out how to frame and tell the story of our aspirations around something as complex as healthcare. And Clinton was pretty committed to the idea that we could provide universal coverage and that we could have the campaign focus on that. But we were addressing the issue as part of a larger economic argument because, at the time, the idea was, “It’s the economy, stupid.”

We campaigned on the idea that we were going to enact healthcare reform not only to provide coverage but also to make sense of the waste in the healthcare system. We wanted to make it possible to bring costs under control and address the fact that a significant amount of the deficit and major drag on the economy from the federal government was coming from healthcare overspending.

When we got into government, the battles internally were all about whether we were going to focus on this as an entitlement program and have a smoke-and-mirrors quality to addressing the funding—or whether we would really take the time and effort to potentially lay out reform-achieved universal coverage in order to make sure that the revenues existed to cover it without a major tax hike.

Those kinds of economic debates were fascinating. It was learning the politics of when you make your arguments and when you don’t, and when the cause is lost and when it’s not.

There were intense arguments back and forth about whether, at the State of the Union address, the president should hold up the health insurance card that every American was going to get. I was opposed to that. I thought that would signal that this is an entitlement program rather than a program for making sense of the healthcare system. And at the time, we didn’t have a clear financial plan.

Guernica: What did you learn from the experience?

Atul Gawande: I learned a lot about the nuances of our policies, but what I learned most of all was how to handle myself. There are times when you have sharp elbows, and people are trying to muscle you out of certain meetings—because then people could leak to the press that you had a role in certain decisions. I, at twenty-six, was very impatient and didn’t know how to keep my powder dry. I was running a team of seventy-five people when I had never been a boss. I was the worst boss ever.

The healthcare reform was very much driven by a team that I was a small part of, which was led by Hillary Clinton and Ira Magaziner. I got to help in various different ways. It was an amazing, interesting time. But when it went down, it went down in flames. At that point, I decided to go back to medical school, but that collective effort laid the groundwork for what would pass about twenty years later.

Guernica: I’m curious to hear more about what inspires your writing. I’ve read that Tolstoy is one of your influences, one of the authors you “steal” from.

Atul Gawande: I don’t know if I can call him an influence as much as I’d call him a master genius from whom I’d love to learn even a little bit [laughs]. I read a lot, a mix of nonfiction and fiction. I read pretty widely—and without a plan. Many of the authors whom I circle back to again and again, though, they tend to fall into a few categories.

One is fiction, the kind that gives me the sense that the author can capture a whole world and do it with such great perception and vividness of character and story. I would put on that list Tolstoy, Hemingway, Faulkner, and even Doyle’s Sherlock Holmes. I go back again and again to those kinds of books.

Then there are the nonfiction geniuses. I’d say the ones I constantly reread are, especially, George Orwell, and David Foster Wallace. Just amazing. For me, his nonfiction is candy—it’s pure pleasure.

And then there are the medical writers who kind of have this knack for the case study. That might be Oliver Sacks or Abraham Verghese or Sherwin Nuland. Lewis Thomas is another person I’d put in this category. They somehow recognize that part of the opportunity as a medical writer is to contribute to science while also expanding what we understand about the human experience and what we go through as biological creatures. They’re amazing writers of prose, but they’re also amazing at understanding the art of the case study.

Guernica: Let’s talk about the Affordable Care Act. To what extent is it helping or failing to help patients who struggle to pay for basic medical services?

Atul Gawande: It’s been an enormous boon for millions of people, whether you were someone who wouldn’t have been able to get preexisting condition coverage, an under-twenty-six-year-old who can now get coverage under your parents’ plan, or someone who lives in one of the states that adopted the Medicaid provisions or that offers care through the health exchanges. We’ve had the first period in decades where the number of uninsured has declined substantially.

It set in motion the precedent that we were committing to a cause of equity, that everybody deserves basic coverage to ease the suffering in their lives, and that we would be able to have our most important healthcare needs addressed. Now, we are a long way from being able to see whether sufficient funding is there and that the rollout will insure everyone’s coverage. Plus, there’s still the debate that some conservatives have that we should repeal the law. But in truth, even among the conservatives, there’s been the concession that we wouldn’t necessarily want to take away this extension of coverage.

So, although it continues to be polarizing, I think it is one of those issues that’s moving from being the hot-button issue to increasingly accepted. The majority of Americans don’t want to take away the provisions that have been brought in by the Affordable Care Act. I hope that we can reach the point where we discuss how we can build on the Affordable Care Act and move forward. There are still holes in it, there are still significant improvements to be made, and it’s time to keep moving on.

Guernica: I wonder if there are particular reforms that you have in mind.

Atul Gawande: At the moment, we have twenty-three states that haven’t expanded Medicaid coverage. There are millions upon millions of people who can’t receive coverage through that mechanism, and we ought to make that part of care in every state. We’re learning more about what elements of the process make signing up for coverage sometimes difficult. We’re figuring out how we can tweak the benefits to make them more effective. The direction in which we’re moving, though, is pretty clear.

At the same time, the French are often touted for their universal coverage system. However, I’ve written before about how this system passed in the French legislature many decades ago, but they didn’t actually achieve coverage of everybody in the population until after 2000.

I think that merely filling in the holes is really important. Then the fundamental issue becomes continuing to reform the way we deliver care so that the costs are actually manageable. One of the ways to do that is to insure that we have these discussions about end-of-life care and the priorities patients have so that we’re not inflicting suffering at the end of their lives. Simply prolonging lives at any cost consumes a huge amount of resources for care that people neither benefit from nor want.

Part of the opportunity as a medical writer is to contribute to science while also expanding what we understand about the human experience.

Guernica: Being Mortal explores the ways we address end-of-life care and confront the end of our own lives. What made you want to tackle this subject matter?

Atul Gawande: I talked earlier about that essay on human fallibility. In many ways I found, without quite expecting it, that I’ve been always been unpacking that essay. My first book, Complications, was about individual imperfection. My next couple of books were about the ways that systems fall short, how they fail to save us from our own ineptitude. But then this book, Being Mortal, is about our necessary fallibility, the fact that we’re not omniscient or all-powerful, and that we have limits to what we can do. I’ve been struggling, in many essays and in my medical practice, to understand how we deal with the fact of mortality.

When I came out of medical school, I found that I spent a substantial amount of time taking care of people who had problems that we were not going to be able to fix. These patients had issues that stemmed from aging and frailty; we weren’t going to be able to stop that. Or they had terminal illnesses, in which case we could sometimes extend their lives. Most of the time, we couldn’t, and if we could, we often did it at the cost of suffering and offering patients the kind of lives they didn’t want.

And then a few other things came into the picture. I had written an essay for The New Yorker in 2010 called “Letting Go.” I felt like I was just scratching the surface, and I wanted to go further. Around that time, a year or two before, my family learned that my dad had cancer in his brain stem and spinal cord that was incurable. So all of that led me to want to understand the way we’ve medicalized mortality—how it’s failed us and what we might be able to do better. Like with many of my books, I was also thinking about what it meant for my own work and what I could be doing better.

I talked to over two hundred patients and family members about their experiences with aging, serious illnesses, and the big unfixables. But I also spoke with scores of physicians, and especially geriatricians, palliative care doctors, hospice nurses, and nursing home workers.

The biggest thing I found was that when these clinicians were at their best, they were recognizing that people had priorities besides merely living longer. The most important and reliable way that we can understand what people’s priorities are, besides just living longer, is to simply ask. And we don’t ask.

Guernica: How did your research on end-of-life care change how you behaved as a doctor?

Atul Gawande: As a doctor, I felt really incompetent when trying to understand how to talk to patients and their loved ones about an illness that we were not going to be able to make better. We might be able to stave off certain components of it, or maybe we couldn’t even do that. And I felt unprepared when it came to having those difficult conversations and helping patients make those decisions.

I found that these end-of-life care experts were making me feel much more competent. They were giving me the words that I could use, and I began to use those words. I’d simply say to a patient, “I’m worried about how things are going.” I’d ask questions like, “Tell me what you understand about your health and your prognosis.” “Tell me what your goals are, if time is short.” “Tell me what your fears and worries are for the future.” “Tell me what the outcomes are that you would find unacceptable.”

That completely reshaped the relationships between me and my patients—or me and my father after he received his diagnosis. It also made me feel much more effective in knowing how to help when I couldn’t necessarily fix.

Once you start to ask patients about their priorities, you discover what they’re living for.

Guernica: Did that make it easier to have that same conversation with your father?

Atul Gawande: It no question made it easier, but it didn’t make it feel easy.

Guernica: Can you take me through what you discovered in your end-of-life care research? How do geriatricians and palliative care experts help patients with conditions related to aging and terminal illnesses?

Atul Gawande: The striking thing is, once you start to ask patients about their priorities, you discover what they’re living for. Once you uncover that, it helps you, as a doctor, decide what to fight for. And when we do that, we often end up identifying limits to the kind of care that people want.

One’s assumption is that these people are going to live shorter lives, but what we’re doing is protecting quality of life. In doing so, you sometimes end up helping people live longer. Certainly, you help people live better days and with more purpose in their lives.

When we ask patients what their priorities are if time is short, what we do is we use what is available to us—whether it’s geriatric care or palliative care or hospice care—to make sure they’re living the kind of life that they want to live.

Guernica: Can you give me an example of that?

Atul Gawande: At one point, I accompanied a geriatrician. We saw a patient, she was in her eighties, and she had all kinds of things on her problem list: she had a lung nodule that might be cancerous, she had not had a mammogram or a colonoscopy, she had high blood pressure. So should we as doctors focus on those things? Or should we focus on what the geriatrician ended up focusing on, the biggest limit to the quality of her life, which was that she was at significant risk of falling?

The patient had already fallen a couple of times at home. If she fell once more, there was a good chance that she would break her hip. And if that were to happen, she would likely die within about six months after that. This meant that she would lose her independence and the life that she loved. We don’t teach what the risk factors are for somebody having a fall. So how do you change that?

Addressing these risks would mostly involve changing some medications to decrease dizziness and really looking carefully at her feet and getting her proper foot care. It’s not a terribly sexy side of medicine, but the result a year later was that she wasn’t having any more falls.

She was still living independently in her apartment in her mid-eighties, and living the life that she wanted with a dog, a garden, and the baseball games that she watched every night. That is a very different picture of how we deploy medical capability and honor the priorities in people’s lives.

Guernica: I wanted to ask about the scene at the end of Being Mortal. Your father had succumbed to cancer. He was cremated, and you sprinkled his ashes on the Ganges. It was a numinous note on which to end the book. I wonder whether exploring how we confront mortality raised spiritual questions for you.

Atul Gawande: My parents tried to raise me Hindu, and that didn’t work out very well. But in that faith, when you sprinkle the ashes of somebody on the Ganges, the belief is that they will rise to nirvana, which is kind of like heaven, and be free from the cycle of birth and rebirth.

The scene at the end of the book is me taking my dad’s ashes to the Ganges. For me, what was significant was that these rituals have been going on for centuries. This custom forged a connection between generations. You begin to understand that you are sometimes finishing the work of others who came before you. And some of the things that you start are not going to be finished by you; they’re going to be finished by the next generation.

Just by making us bring his ashes to the Ganges, that was the connection that I felt like my father was making for me. It was a mix of the prosaic and the lofty.

The Ganges is one of the most polluted rivers in the world. And as part of the ritual, the oldest son has to take three sips of the river’s water. I had looked up the bacterial counts in the river ahead of time. I pre-medicated with antibiotics. Although I felt a bit removed from the religious side of it, I did feel this connection to the idea that we do live for something larger than ourselves. And I don’t know if you would call that spirituality or not, but that sense that you live for loyalty to family or a country or ideals or God—I think that’s an intrinsic and necessary part of being human.

G

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