From the Q&A session, Dr. Gawande discusses life and death, and the medical attention we receive in between.

ATUL GAWANDE, Author, The Checklist Manifesto and Being Mortal: Medicine and What Matters in the End; Staff Writer, The New Yorker; Professor, Harvard Medical School, Harvard School of Public Health

ALICE HUAN-MEI CHEN, M.D., M.P.H., Chief Integration Officer, Director of the Center for Innovation in Access and Quality, and Director of the eReferral Program, San Francisco General Hospital; Professor of Medicine, University of California, San Francisco – Moderator

 

ALICE HUAN-MEI CHEN: It seems to me that one of the reasons that your book is so well received is that it speaks to the universal. At the risk of being flippant, the bumper sticker line that comes to mind is “Life is a sexually transmitted condition that’s invariably fatal.” [Laughter.] But in all honesty, people have said Americans somehow think that death is avoidable. How has it come to be that we as a society have such a hard time facing it head on?

ATUL GAWANDE: A woman at Stanford named Laura Carstensen looked at how our desires and goals change depending on how close we are to the end of our lives. She did these interesting studies with people wearing beepers. They were ages 18 to 94; her team would page them, and whenever they were paged, they would have to write down what emotions they were experiencing, what kinds of desires they might have. In another set of studies, they would ask, “If you had an hour of time to spend with anybody you wanted, who might you want to spend that time with?” The kinds of answers they got back were a kind of young signature and an old signature.

What [young] people wanted and desired was often getting stuff, achieving stuff, getting public recognition, being connected to a really wide group of people. Older people tended to want a smaller, tighter-knit group of people that they had deeper, more intimate connections with. The further layer that came out of this was [that] a lot of the puzzle was around as you got older, what took so long to figure this out? That’s wisdom that you’re accumulating along the way, and the thought was maybe it’s brain changes or maybe it’s  a cultural phenomenon. Her work suggests that if you have 20 years or more in front of you, you might as well think you’re immortal.

CHEN: Shared decision making is a little bit of a trendy concept in health policy circles now, and in my experiences [is] easier said than done. Actually, your description of Dr. Benzel, your father’s neurosurgeon, is one of the clearest examples that I’ve seen, and it kind of dovetails into one of our audience questions: How do doctors take the time to learn about their patients’ priorities? Aren’t they incredibly busy already? How do they know what to ask? Doctor Benzel seemed to know what to ask.

GAWANDE: How do you make the time to unlock the priorities that people have? How do we have the time to do anything right in medicine? There couldn’t be anything that’s more important, and so I came at it by thinking about it a couple ways. I think the concept of what the job of a doctor is has changed enormously over the last half century. Fifty years ago, the job of a doctor was “doctor knows best.” It was a paternalistic ideal. The doctor might or might not tell you how sick you are, wouldn’t tell you options, would just say, “Here’s what we’re gonna do to you.” By the time I was in medical school, training in the ’90s, [there was] an ideal that we regarded as “the informative doctor.” It’s almost a retail model: here is option A, Here is option B; here is the red pill and the blue pill, and the risks and the benefits. What do you want to do?

I was taught that when people will then say to you – and they say it to you often – “What would you do, doctor?” you’re supposed to say “It’s not about me. It’s really about you. So it’s your choice. It’s your call.” People feel a little abandoned in those circumstances. In fact, what people want is a counselor – the term for it is shared decision making. I didn’t really understand what that was until I came to see people like Benzel, who was the neurosurgeon for my father. The other neurosurgeon was someone we consulted, someone who gave my dad the options. He sort of first tried the paternalistic mode of saying “You should have an operation. You should have it today.” My dad made him spell out all the options and he switched to the informative mode, “We can put off the surgery, and you’d be paralyzed. Or you could have the surgery now and we’d minimize the risk of paralysis, but yes, there’s a 25 percent chance of major complications, like paralysis.” [Laughter.]

What Benzel did was he first asked, “Tell me about your life?”  He asked those kinds of questions, and it became clear that my father’s first priority was he wanted to stay a surgeon – my dad is a surgeon – as long as he could, and wanted an option that was not going to risk taking that away. They decided to take the risk that the tumor would advance, and make him catastrophically paralyzed, and wait for surgery. As it turned out, he waited two and a half years without it advancing. It was a risk that they’d agreed was a wise one to take. Then he had to end his practice because the paralysis had advanced, and that was when he went for the surgical option.

That way of going about it, and his way of being uncomfortable with the uncertainty of the situation but identifying the priorities and goals that someone has, and then fighting for them, is the really cool, interesting thing and it became something I wanted to [use] more [in] the way I practice, too.

CHEN: There are a number of questions here about political controversy – you know, the whole Sarah Palin death panel issue. What’s interesting is approaching end of life in the way you’re advocating, which is really trying to understand what makes life meaningful. Avoiding the kind of lottery ticket mentality of the rare cure turns out to be one of the few areas in medicine where we can hit that triple aim: improving patient experience, outcomes and actually reducing cost. But as soon as the cost issue comes up, all this death panel rhetoric starts flowing. What would be your thoughts in terms of how do we actually engage? Or do we side step it?

GAWANDE: One of the concerns I have is that if it’s just about saving costs, it can actually be sacrificing the priorities and values that people have.

CHEN: When we talk about that last phase, inevitably on the issue of physician-assisted suicide, our right to die comes up. What are your thoughts on physician assisted suicide?

GAWANDE: I’ve come to complicated views about it. I think that people with unbearable suffering should be given the option that they could have an assisted death. In Oregon or Washington, it’s done with a careful procedure that has led to just 1 percent of the population choosing to have that kind of a prescription. Only half end up using it. But the option is there on your shelf and the relief of knowing that there is a pathway if your suffering becomes unbearable.

Where it gets complicated is that I think that the percentage of people who end up choosing assisted suicide should be regarded as a failure of the health system. Those are people [for] whom we have failed to relieve their burden of suffering. I’m alarmed by the idea that a goal is a good death. I don’t think our goal is a good death. I think our goal is a good life all the way to the very end. There are consequences if we think about it as a good death.

In the Netherlands, the first country to have adopted this approach, the percentage of people at death who end up choosing this pathway is closing in at about 4 percent. The most common reason is that they say that they want to take this path because they don’t want to be a burden on others. That worries me. It worries me even more that the Netherlands was one of the late countries to develop a hospice and palliative care system to allow people more options for being able to have something other than suffering at the end of life.

This debate is going on very intensively in India about assisted death. In India, cancer patients are not given narcotics at the end of life. I saw surgery patients there that were only given Tylenol for orthopedic surgery or for abdominal surgery. So if you had a terminal cancer – you’re in terrible pain and no one’s doing anything about it – wouldn’t you want assisted death? Something to put you out of your misery? But each one of those is a failure of the health system.

So I am supportive of assisted death, but it’s with the understanding that assisted living is harder than assisted death, and each death chosen for that pathway is our failure to have developed capabilities that relieve people of suffering or to deploy the known capabilities to relieve people of that suffering.

CHEN: Roughly 8,000 [people] turn 65 daily. At the same time, geriatrics may be the only specialty where you make less the more you train. The number of geriatricians has dropped by 25 percent in recent years. Clearly these trends are not in alignment.

GAWANDE: I had the geriatrics clinic on the first floor right below my surgical clinic. I went in one day and I said, “I’m writing a book, can I follow you around?” They were like, “Yeah, sure.” The geriatrician is the one who is willing and able to deal with all of the range of problems that an elderly person has, many of which you cannot fix, but you can sometimes manage. An example that really struck me was a person in her 80s who [came into the office.] As I looked at her, I thought the biggest risk that she faced was that there was a chest X-ray that showed a possible lung nodule; that she’d had polyps in the past and should she have a colonoscopy or not might be a discussion that we needed to have; and her arthritis was really acting up and maybe there’s some medication for that. We should pick one of those and work on it.

What [the geriatrician] zeroed in on was the fact that she was at tremendous risk of falling, that in talking to her, [he’d learned that] she had been having some falls and that was the most dangerous thing for her quality of life, for what she cared about in her life, which was living in her apartment independently for as long as she could. He knew the risk factors, which I didn’t know, things like being on four drugs or more or having weakness. He paid more attention to her feet than anywhere else and showed me how to examine the feet and then made a plan for her that addressed each of those issues: reduced her medications, worked on nutrition for her, got a podiatrist to work on the sores on her feet.

A year later, I talked to her and she’d had no more falls since that visit and was still living independently in that apartment, and her risks had been very high for a falling in six months. Those are the kinds of capabilities we’re talking about.

CHEN: What are some of the things that you actually see work in end-of-life planning?

GAWANDE: At the first level, what comes has been powerful in Oregon, Wisconsin and other communities that have been able to make this work is being willing to talk to your own family member about “What are your fears and worries? What are your goals? What kind of life is worth living for you and what kind of life isn’t worth living?” Because more often than not, 70 percent of us will come to that moment and need someone else to speak for us, because we can’t. Those people are rarely equipped with the information.

CHEN: The Institute of Medicine just released a report entitled Dying in America: Improving the Quality and Honoring Individual Preferences near the End of Life. Is there anything that is missing in that report or that you would want to highlight?

GAWANDE: It’s a 507-page compendium of all of the evidence about the ways in which we’re failing at the end of life. What’s great is that it was a much more comprehensive overview of the science than I ever managed to get to, because the 500 pages distills tens of thousands of pages of information. We were fortunately aligned in all the same ways.

What I hoped to do was tell the stories behind the data of what it’s like to try to use that kind of information and apply it in day-to-day life, whether as a doctor or as a family member, and also what it’s like when you don’t have that kind of information. The parts that are missing are a little bit of “How do I do that?” Conversations are powerful, but what kinds of conversation, and what are the words? A lot of what I was looking for was how do I get the words to talk to my father, to talk to my patient? Do I really have to break bad news for him?

Some of those skills and lessons that people have are really powerful, like learning to not just give people the data about survival rates and so on but instead to be able to use words like “I’m worried. I’m worried about what this means.” It conveys that you care, that you’re not certain that they’re going to die in six months, but that you’re worried and that leaves open many possibilities, but also some direction for going forward.

That report was phenomenally important and part of a wave of [a] variety of information that suggests we are way beyond death panels now and willing to engage at a national level with transforming our institutions to work better for us.