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We all die, so why don’t we die well?

October 9, 2014 at 6:15 PM EST
Modern medicine has a fundamental failure in its approach toward aging and dying, says Dr. Atul Gawande: “We don't recognize that people have priorities besides just living longer.” Gawande, a surgeon and the author of a new book, "Being Mortal: Medicine and What Matters in the End,” joins Jeffrey Brown to discuss his education in mortality.
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GWEN IFILL: Finally tonight: deciding what’s important, and preparing for the inevitable, a conversation about the end of life.

Jeffrey Brown has that.

JEFFREY BROWN:“I learned about a lot of things in medical school, but mortality wasn’t one of them,” words written by a surgeon, but if you take out the reference to medical school, probably true of most of us. We might learn to live. Few of us learn to die.

That is the subject of a new book titled “Being Mortal.”  And the aforementioned surgeon is also the author, Atul Gawande.

And welcome to you.

DR. ATUL GAWANDE, Author, “Being Mortal: Medicine and What Matters in the End: Thank you.

JEFFREY BROWN: There are two facts of life you seem to focus on. One is that, yes, we all age and die, and the other is that we don’t seem to understand it very well.

DR. ATUL GAWANDE: No.

Medicine has taken over mortality in some sense. We are responsible more and more for trying to fix the problems of aging and dying. But we don’t know how to do it. And I think the thing that I discovered was, we have a fundamental failure. We don’t recognize that people have priorities besides just living longer.

JEFFREY BROWN: Why do we not understand that, I mean, that we want to live longer, but we want to live longer in a certain way with certain values and beliefs?

DR. ATUL GAWANDE: Yes, I think you’re exactly right.

Some people will say it’s really important to me that my brain work, that I am who I am. Other people will say, look, I just want to know that I’m not suffering and that I’m not in pain. Others will say, I have a life project that’s really important to me.

And the fact that we in medicine, we prioritize health, safety, and survival. We think that that must be what people place first. But, in fact, we make choices all the time in our own homes about risks we take.

And one of the consequences is that, in medicine, as we face problems we can’t fix, like aging or a terminal illness, we often sacrifice the very reasons that people want to be alive.

JEFFREY BROWN: You’re writing about your profession. You’re writing about some large societal issues, but you write about it in very personal terms, in your own family, right?

DR. ATUL GAWANDE: I interviewed more than 200 patients and family members about their experiences with aging and serious illness.

I tracked geriatricians, palliative care specialists, nursing home workers. And my dad along the way got a diagnosis of a brain tumor in his brain stem and his spinal cord. And I realized the stakes of this was, how could we make it so that he is not — that he gets every chance he has, but then that we’re also not making him suffer right through the end and taking away things that are really important to him?

What I found is that it’s pretty simple. Priorities really matter for patients. The most reliable way to know people’s priorities is to ask about them.

JEFFREY BROWN: Just ask.

DR. ATUL GAWANDE: And we don’t. We don’t in medicine.

JEFFREY BROWN: Well, why is that? I mean, it seems so — I read it and you say it and it sounds obvious. Just ask, what is it you want when you’re at the end of your life?

But doctors don’t. Even family members don’t.

DR. ATUL GAWANDE: Well, first of all is, it’s the words. Right?

That’s a really painful set of words to say to somebody.

JEFFREY BROWN: Yes.

DR. ATUL GAWANDE: What do you want at the end of your life? Are you saying I’m — are you saying I’m — might as well give up now?

What I found was tracking people who are really good at these conversations, they ask the questions in very different ways. They ask, well, what’s your understanding of your condition?

And people will often say, well, I know I can’t be cured or that I might even die. Then you say, what are your fears and worries for the future? What are the goals you have if your health should worsen? And what are the tradeoffs you’re willing to make and not willing to make?

And asked that way, what you’re saying to people is, I want to know your priorities, besides just being a, you know, pulsing body alive, but not getting to have life, not really living.

JEFFREY BROWN: And all of this, of course, in a society that is — we’re living longer. Technology allows that. So these kinds of issues come up evermore.

I don’t think there’s — there is probably not a person listening to this that hasn’t faced it in some way.

DR. ATUL GAWANDE: That’s right, either because we ourselves face it or we have a parent that is facing it.

And the difficulty is all of that success, our ability to have technology that can always do something more. We can put you on the ventilator. We can give you another round of chemotherapy — that we haven’t learned, well, what does it mean to even die?

And then going further upstream, what does it mean to make choices where some of these things take away quality of life that we care about, even before you die? And I think the answer is that we haven’t had the words around articulating what our priorities really are.

For example, doctors, our approach used to be 50 years ago, it was doctor knows best, paternalism. We’re going to tell you exactly what you’re going to get, and we’re not going to actually tell you what’s going on with you.

JEFFREY BROWN: Right.

DR. ATUL GAWANDE: And we rebelled against that in the ’80s and ’90s. We moved to doctor informative, almost a retail mode. Here are the options, A, B, C, D. Here are the risks, the benefits, the pros, the cons. What do you want?

And people would say, well, what do you recommend, Doctor. And I was taught to say, well, it’s not my decision. This is yours.

What people want is a counselor. An effective counselor is someone who can talk to you about, what do these numbers mean? What are you actually worried about for me, Doctor, and then let me tell you my priorities and help me choose which option will meet them.

JEFFREY BROWN: Do you see that changing in your profession? Do you see a better understanding of the empathy that’s required to ask the kinds of questions you’re proposing?

DR. ATUL GAWANDE: I think we actually are full of people in our profession who have had that empathy.

If I can judge from my own situation, I wanted to do better. I tell the story of a 34-year-old woman diagnosed in her eighth month of pregnancy with terminal lung cancer. And we actually spoke about the idea that we didn’t want to make — we didn’t want to be on the train all the way to the end to the point that she never had time and quality of life, because she knew it was going to be incurable, but she wanted the best possible treatments.

And yet we took it, took that train right off the cliff practically. We never got off with making sure that quality of life got there. And I think the reason why is, we have anxiety about asking these questions, patients, doctors, family members, because we haven’t had the words.

And I think we know now increasingly more about what people who are really good at these conversations do, and it’s important to understand they are a skill. They require asking a few of these questions. And you have to ask them repeatedly over time, because people’s priorities change as time goes on.

JEFFREY BROWN: All right.

You know what? We will continue our discussion online.

And, for now, the book is “Being Mortal.”

Atul Gawande, thank you so much.

DR. ATUL GAWANDE: Thank you.

 

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