What Matters in The End?

It’s not do we fight, or do we give up? It’s what are we fighting for? People have priorities besides just surviving no matter what. You have reasons you want to be alive. What are those reasons? Because whatever you’re living for, along the way, we’ve got to make sure we don’t sacrifice it. Can we, along the way, whatever’s happening, can we enable it? Interview with Dr. Atul Gawande and his book, Being Mortal. interview transcript

I dove into the topic of mortality because I was as confused about it. First of all, I didn’t know what it meant to be a good doctor for mortal beings, the question of what does it mean to be competent with people who are going to have problems you cannot fix? And also, how do you become competent and great at it if you don’t know whether the problem you’re dealing with, with certainty, is one they’re going to die from or not? And the situations that disturbed me the most were ones where someone would come in, they’d have a condition that I knew was incurable, a terminal cancer, but we don’t know, is it going to be a year? Is it going to be three years? Is it going to be five years?

We have new technologies, and so we’re going to start trying stuff. And then I have so often been there when we said, “Let’s try that one more thing.” And they’re in a bad situation. And we say, “Should we try surgery? Well, yes. We have to give it a try,” and then they never wake up again. And then you see the suffering that has come from that, because we never once talked about the fact that their life might be mortal — is mortal. I didn’t even know how to begin to have that conversation, and they never woke up. They spent the next couple weeks in the ICU, and then we unplugged the machine. They didn’t get to say goodbye. They didn’t get to say, “I love you.” They didn’t get to say, “I’m sorry.”

And the families, I see that they’re tortured, but then you see, also, when people have those kinds of endings — six months later, families are more likely to have PTSD symptoms and depression. And what I realized is, we were not really talking about death or dying. We were really talking about how do you live a good life all the way to the very end, with whatever comes? That’s what you begin to unpack.

Someone said to me, “I want to take my children to Disney World, my grandchildren. One thing I want to make sure I’m able to do is take my grandchildren to Disney World.” She was telling that to me in the hospital, emaciated, on her last days. She would die 48 hours later. And we had missed that. We had failed. We had never asked her, to know that might have mattered to her, because we could have made that possible for her a month before.

I ended up devoting a chapter to a psychologist from Stanford that it never occurred to me would be where the direction of the book would go. Her name is Laura Carstensen, and she is the psychologist who’s been following people across the course of their lives. She has a cohort of some 300 people, from ages 18 to 94 when they started in her study, and she’d followed them all the way to the end of their life.

What was interesting to me was that as they got older, they became less healthy — no surprise — and they had some loss of function along the way. But they also had increasing sense of fulfillment in their life, despite all of that. And some other studies, that after age 65, people were more likely to have love in their life. They were less likely to have anxiety and depression. They were focused less on acquisition and having all the material stuff.

Where it blew up my whole sense of what I was doing as a doctor is, I thought my priority was your health and your independence. And then that means that I was always lost. What is my goal for people when they’re not healthy anymore or they don’t get to be independent? What she opened up for me was the recognition that well-being was really about getting to what made those people happy, and when they lost that happiness is when they no longer were having some control over their own story, that they were not getting to be the shapers of their own story. That’s what you see in people who are in hospitals or in many nursing homes, not all, where our goal is safety, survival, and health. And that’s why you can gradually lose some functions and have some health issues along the way and yet have great satisfactions in life.

Sometimes it does take that medical capability. I wrote about Peggy Batchelder, who was my daughter’s — when she was 13 — her piano teacher, who had a metastatic cancer and was laid up in the hospital for weeks on end. She just was miserable and angry and, ultimately, went home on hospice. And then the hospice nurse had that conversation: What does a good day look like? And then: Let’s have a goal, one good day.

And then they worked on that. At first it was, OK, we’re going to get you in a bed on the first floor, so you don’t climb the stairs. We’re going to arrange for getting dressed and bathed. And after two or three days of that, she lifted her sights. And then she wanted to teach piano again.

The idea that that was possible — it was extraordinary. My daughter had the most extraordinary piano lessons. And then there was a recital, and at the recital, they played Brahms and Chopin and Beethoven. It reshaped my daughter’s life, and that was the legacy Peggy wanted to leave.

Two weeks ago, my daughter graduated from high school and entered Berklee School of Music, because of Peggy. They were together only a couple years, but it made that impact. And that idea — that was beyond us.

That took real medical expertise too.

Re: quality of life... there’s plenty that also was not quality — that she would arrive, and Peggy had to work her way through some pain and work her way through some indignity, but then, also, find something really beautiful about that. Or, in another case, sometimes see the struggle for that and have real conversations we’d have at home about why is it so hard and painful, and reaching that place where you could see people in denial about the situation and not being able to talk about it. They’d see families where they wouldn’t be able to talk about anything except “What’s the next treatment we can try?” instead of saying, “All right, what is the next treatment we can try? But also, what’s possible today? What can we do today that also makes sure we’re not missing the chance to enjoy the time we have?” Those aren’t opposed to each other. We start to see these conversations unfolding in multiple generations, and I think that’s crucial.

Yeah, that complexity — I describe my grandfather’s death. He got to live to 108 years in that village in Maharashtra, with family all around, and he spent the last 20 years of his life with infirmities that would’ve put him in a nursing home in the United States. But there, he was with family. He was at the head of the dinner table. People would come to him to bless their marriages, to get advice on business decisions — he was respected as the elder and could have that all the way to the very end. But it came at a cost. That was possible because the younger generation, especially the women in the younger generation, were more or less enslaved to his needs, his physical needs.

What India’s going through right now is what we went through in the 19th century, which is — the shift from an agricultural economy was that young people got freedom. But I’m watching, and I wrote about the breakdown of the extended family in India as they advance economically and industrialize, because it involves people moving to cities and following their dreams. You get this complicated picture.

This is really crucial. The most powerful study, for me, was the study led by Jennifer Temel, a Massachusetts General Hospital physician, which took care of stage four lung cancer patients. They lived only, on average, 11 months. It’s a terminal condition; no one lived past about three years. Half of the group were randomized to get the usual oncology care, and the other half were randomized to get the usual oncology care plus a palliative care clinician, physician, to see them early in the course of their illness. It was sort of a radical idea — see them from the very beginning.

The group who saw the palliative care clinicians from the very beginning did end up stopping their chemotherapy. They were 50 percent less likely to be on chemotherapy in their last three months of life. They were 90 percent less likely to be on the chemotherapy in their last two weeks of life. They were less likely to get surgery towards the end. They had one-third lower costs. They started hospice sooner. They spent more time out of the hospital. They were less likely to die in the hospital or die in the ICU. And the kicker was that they not only had overall less suffering, they lived 25 percent longer.

If it were a cancer drug, if it were a pill, it would be this blockbuster company, and we’d all want stock in it, the whole thing. And then when I trace down, like, “What are you guys doing, and how can I do it next week without having to be you guys?” — the answer was, they were just having these conversations: Identify the priorities and activating the “My good day is ‘X.’ If I start feeling like my chemotherapy or my surgery is going to take that away from me, and that’s not worth it to me, stop.” And then they stop, and they feel better. And they do better for longer because the other thing it hooks up with is that we, as clinicians, are excessively optimistic about the power of what we’re going to be able to do for you.

The way I was taught to exercise my authority was to give people knowledge and then ask what they want to do with it. But what I found in the real world was that patients would ask back, “Well, what would you do?”

We’re taught to not take away their agency: “No, no, no. This is not for me to decide; this is for you to decide. Only you know you; I don’t know you; and you have to make the call here around what’s more important to you.” And people felt completely abandoned. It never felt good.

What the palliative care clinicians, when I watched them — or geriatricians — would do is they would go one step farther. They would ask — not just tell you what your options are — they would listen, to ask, “What are your goals? What really matters to you?”

The idea is to be a genuine counselor. The only way you can offer wisdom is by connecting what you know and have observed about what happens with various things to the goals that this individual person has. The art of it is, can I extract, can I listen well enough, can I extract from this conversation enough to tell me what you really care about, to give you some guidance along the way here?

That is hard. I had to learn from the palliative care folks. One person said to me, “The family conversation is my procedure. It takes as many of those family conversations, learned with deliberate practice, to be great at it as it takes for you to learn to do your cancer operations. And so think of it that way.”