Atul Gawande’s current best-seller, Being Mortal, has touched a nerve regarding our medical system’s very poor handling of aging, life-altering illnesses, hospice, and palliative care. The book raises the question of why the U.S. health system prizes the length of a patient's life over the quality of that life in a person's final years.
I caught up with Gawande after he delivered a public lecture on his book. Below is an edited and condensed transcript of our conversation.
Harold Pollack: Let’s start with the craft of writing Being Mortal. You’ve written on so many different things. How did you fasten on what became this book?
Atul Gawande: I’d written a New Yorker article in 2007 about how we age. It was about the science of what happens to the body, and the ways we have made ineffective policies and planning for that. That segued three years later into Letting Go for the New Yorker. Those became the anchors for the book.
I decided to take it to a book because I realized the articles just scratched the surface. I use writing as my way of thinking out loud and investing in time to dig into a problem. And the thinking I’d done was already leading me to experiment with changes in my own practice. It seemed possible that researching and writing more would open directions for what we could do to improve care for the aged and for those at the end-of-life. There was also a global dimension as I explored these issues in India and other places. I wasn’t done thinking about the subject, and I was therefore not done writing on it.
HP: You mapped out many stories of individual patients, clinicians, and families over a reasonable period of time. How do you find those people? How do you present to them the project that you’re doing?
AG: Some of them were my own patients or family members. The sensitive part was circling back and asking if it’s all right to formally interview them for a book I was writing on how we deal with matters of aging and mortality. Some said yes. Some said no. There were lots of people I found through others, too. I asked people all over about their family and friends grappling with these kinds of experiences. I visited numerous nursing homes and home health programs, as well, across many demographics and met people that way. I tried to find stories the same way any reporter does. You snowball from one person to the next until you’ve accumulated lots of folks.
I got a lot of peoples’ stories, but I couldn’t always use them. I had to write a lot of apology notes to people who gave me a lot of time but didn’t end up in the book.
HP: There’s a lot of film on the cutting room floor.
AG: Yeah. I lost count after talking to 200 patients and family members about their experiences. I end up using only seven or eight stories really.
HP: Do you begin with a detailed war plan? Do you interview 200 people and then gradually, the story comes together? Or have you basically mapped out the book from the start, at least its main skeleton, and then you’re filling in as it goes along?
AG: “War plan” is probably a nice metaphor, because you are planning out a battle but conditions on the ground change your battle plan considerably. I always start with a frame and an outline and the direction that I think I’m going, even what I think the ending will be. I then find that it gets blown out of the water.
I learned from one writer-friend the idea that at about two-thirds or three-quarters away through your first draft is a great moment to bring a group of people to react to it and not as individuals but actually to gather them together as a group.
Each time, I’ve convened what I call my rough draft book club. I go down to New York, gather four or five of my writer-friends at a friend’s apartment, and buy them a cheap takeout dinner. They’ve all read the rough draft, so I ask some questions. One person says what he liked about it. Another says what she didn’t like about it. Then I listen as they react to one another and start getting a sense of what I can do better.
For instance, I had a structure for this book that changed dramatically after this conversation. I had to reorder my chapters, cut one out, and add a whole new chapter I hadn’t expected or wanted to write.
HP: What was that new chapter?
AG: The new chapter expanded focus on my dad. I had been hesitant to go there. Also, I had massively more information about the history of aging and nursing homes than really worked. It was full of little wonderful sidebars that weren’t connecting. They were interesting, but ultimately were just kind of woolly ideas that didn’t go anywhere.
HP: One tough question. I watched your lecture today with some primary care physicians. Their reaction was to say, “Of course all this information about the need for conversation in end-of-life care was revelatory to you, Dr. Gawande. You’re a surgeon.” In your telling of the story, how much did the culture of specialty care fail to prepare you adequately for the challenges recounted in your book?
AG: Look I’m a surgeon--highly procedural, geared towards always being able to offer something more. It’s no surprise that this field did have prepared us formally for these kinds of conversations. Furthermore, I’m in an academic medical center, high-end Mecca. Many people come there because they want that experimental therapy, the last ditch maneuver against all odds.
Part of the reason to get out and about, however, is not just to look at my own particular experiences, but to take a broader view. If these conversations are so important--and people across other fields seem to know it--we’re still not having them. It’s not happening for two-thirds of people with advanced cancers for example. We have evidence that these conversations are even less likely to happen for other common things people die of: congestive heart failure, for example.
Maybe that’s because families and patients tend to move on to a specialist rather than the primary care doctor for these conversations, but I often find primary care doctors aren’t having them, either.
HP: I’ve heard from primary care doctors and geriatricians that the surgeon or the oncologist is the person who has the real authority to have that conversation--
AG: And we don’t do it.
HP: Even if they had the skill to have the conversation, that’s not really who the patients are looking to for these conversations.
AG: If you look at the studies, they find that having a palliative care doctor or geriatrician more closely involved in care can lead people to forego aggressive therapy sooner and have better outcomes--not only less suffering but even improved survival. But we don’t have enough of these doctors to go around. Furthermore, there’s something wrong with the idea that you outsource this kind of decision-making and discussion. It needs to be considered a basic part of what we do, and I don’t think there’s a reason that people who are in oncology, or in cardiology, or in surgery who have the most ready and up-to-date knowledge about a person’s condition can’t do this…
Also, it allows for more nuance in care. It’s not just “Do we do the surgery or do we not?” Even if we’re doing the surgery, what is the goal--for somebody who has a chronic illness or has a terminal illness--besides just winning the lottery ticket and living longer? What is the point where as even when you’re in the midst of the operation, what are they willing to sacrifice along the way, and what are they not willing to sacrifice?
I agree that the specialty professions have been loathe to admit our limitations and to cope with our limitations in talking to patients. But I’m not willing to give up and simply say that it’s not possible for our professions to take those responsibilities. We’ll be much more effective if medicine is incorporating these kinds of complex end-stage decisions with all the different specialties involved.
HP: Since back surgery is the paradigmatic case of over-use, it raises economic questions. We’re having this conversation in the department of geriatrics. As you note, the geriatrics profession seems to really be suffering right now. You present a terrible anecdote, in which a geriatric team at the University of Minnesota demonstrated in a randomized trial that they could dramatically reduce disability and depression, as well as the need for home health services. For their troubles, that department was dismantled. To simplify, they could not economically justify the added $1,350 per-patient they expended, given the incentives of our fee-for-service system.
Leaving aside the economics, there are cultural factors at play, too. We have trouble recruiting social work students to go into geriatrics. It’s a lot easier to get many of our students excited about working with children and youth. How do we deal with these challenges?
AG: First there’s the economics of where we are. We’re now in a post ACA world. Before the ACA, about 5% of the country was under alternative non-fee-for-service payment systems. We’re now at about 20%. That’s not enough yet to produce an enormous number of job openings in geriatric social work, palliative care medicine and so on—the providers who can effectively ensure that people are getting higher quality and what turns out to be lower-cost care.
But that shift to 20% will reach 30%, then 40%. The demand will gradually rise. It will eventually be there. Progress will just be slower than we would like it to be. Often, the students are the last to figure it all out.
HP: They’re watching who’s driving the Mercedes in the parking lot….
AG: Right… But I think there’s also a second level. This concerns people’s imaginations--even my own imagination about what I was doing, what my job was, what I was really excited about in medicine.
The paradigmatic example for me was being able to do an appendectomy. Someone had a fixable problem that would kill him. I could go in and save his life, with a really simple thing I could do in an hour. He is grateful for it and we all move on.
It’s harder to convey the value and reward of helping people manage unfixable problems, like frailty or a terminal condition. It’s hard to explain except that I’m finding right now that my most gratifying experiences as a doctor are coming from starting to feel competent at how to help people navigate serious potentially incurable illness, how to navigate being really sick. We in the medical profession have not been very effective at even articulating such tasks require or what the goals even are. We don’t teach the skills or expose students to them in action. It’s not surprising that they therefore don’t choose professions like geriatrics. But learning how to arrive at good answers means getting to grapple with the meaning of life for people.
HP: You used the terms confidence and competence. These get people excited that they have a sense of that in what they’re doing.
AG: Whatever we do, we’re excited about our ability to solve problems and to develop and show confidence and competence to accomplish things other people can’t do.
HP: One of your book’s saddest quotes comes from a hospice patient, who says: “The oncologist and the heart doctor told me that there’s nothing more they can do for me.” It’s as if palliative care and hospice are the consolation prizes we give you when we really can’t do anything more.
AG: There’s a profound sense of abandonment. That abandonment comes when the doctors wash their hands of the situation. “Well, there’s nothing more I can do.” Or, “If you want to, you can choose not to take what I’m offering.” Instead of helping people address the real question: “What are you ultimately fighting for here? Let me help in doing that, even if it means not choosing the therapeutic modality I initially recommended.” And so yes. All the other options appear like, “Well, you can give up.”
Even when we are needing to handoff, I’m involving someone who is going to have palliative care or hospice or primary care team. I’m not involving them because there’s nothing more I can do. I’m involving them because we require other people’s expertise to help us achieve what we’re trying to do.
I’ll give you another example. When people with severe back pain go to see a spine surgeon alone, the spine surgeon tends to say either you can take my solution or I’ve got nothing to offer.
In contrast, when people go to a comprehensive spine clinic, they see both a surgeon and a physical therapist. The physical therapist talks about what physical therapy involves, and the spine surgeon talks about what the surgery involves. In this situation, many more people choose physical therapy because it’s not the surgeon saying, “Well, there’s nothing more I can do. Go home and live in misery.” You had a non-surgical option that the surgeon was saying was okay, that this is an appropriate part of care.
HP: I felt a tension reading your book. You’ve done all this work on checklists. Yet aspects of end-of-life care feel like more of a craft. There’s human nuance in which doctors and other must have a feel for people, how to talk to people about intimate and painful subjects. Is this something we can operationalize and define in specific process measures to know that we’re providing proper care?
AG: In surgery, when you bring in the checklist, it’s about assuring a minimum level of performance. We can measure it in complications and death rates. But it’s harder to define and measure what the minimum level of performance is for patient-doctor communication about serious illness. What is the measure that we’re going for? The closest thing I can get to is something like this: How many people feel that their clinicians understand their priorities and goals besides just living longer? We’d probably find out that we’re not performing very well, and that we could do better and better with time.
We still want to measure survival. We still want to measure complication rates and all of those things. But we also want to know that we’re not sacrificing what people consider to be the reasons they want to be alive.
HP: How is the end of life care and palliative care experience different at different ages? Some of your stories involve very young people, for example Sara Monopoli. How is their experience different from those of older people?
AG: There are a few populations where it’s strikingly different. Younger people are much more likely to get aggressive therapy till the end, have much more suffering at the end, and have their families experience PTSD and depression after their passing.
In part, that’s because it’s such a violation that any young person should die. It’s hard to back off the goal of trying for more time no matter what, towards insuring as good a life as possible in the time we have remaining with them.
Certain minorities, in particular African American patients, are much more likely to have a negative experience with these kinds of conversations. They are much more likely to seek aggressive care at the end of life, and to die in the ICU. It speaks to how much mistrust many African Americans feel about whether people in the health system really care about them, whether they’re being deprived of options that we would be offering to other people.
HP: One additional factor may come into play . You don’t get a second chance to make a first impression. Many minority families have had specific negative experiences with the health care system. These experiences may have nothing to do with the current care team. These still shape families’ understanding.
AG: This comes up routinely in emergency situations. One of my colleagues named Dr. Zara Cooper is a surgeon who does palliative care and is studying this. In the emergency setting, you’ve never met somebody before. You need to break bad news about where things are going. Often, no one has had any previous conversation about the end of life, instead there was only talk about the hopeful things. So a patient or family member is hearing the bad news from a stranger, a stranger trying to get them to grapple with the possibility that going to surgery or trying the emergency maneuver may be worse than other options. Do they trust you? Often people don’t. But it is not a bad outcome that you’ve started the conversation. Perhaps they still go ahead and opt for a treatment of unlikely benefit. There are still many gates along the road for someone at the end of life. At a certain point, people develop what I call the ODTAA syndrome: It becomes one damn thing after another.
When it does, at least you’ve said, “Yes, okay. We’ll try putting your dad on the ventilator, or try this last ditch operation, but in three days, let’s reassess where we are.” If you do it right, you have set some expectations. You’ve said that we hope all will be well, but if not, we’re prepared. You’ve started that conversation for down the road.
If, however, you’ve decided that you’re only going to talk about the hopeful things and never bring up the possibility that things do go awry, it comes as a shocking surprise. The family’s confidence in you can be undermined. And you’ve only made it that much harder to sort out when the plan isn’t working.