TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

Many of us know someone who was treated for incurable cancer with chemotherapy, hoping the treatment would extend the amount of time they have left. But they suffered terrible symptoms from the chemo, and when the chemo didn't seem to be effective, elected to try even more aggressive treatments, treatments that only seemed to cause more suffering before they died.

Dr. Atul Gawande writes about such a story in the current edition of the New Yorker. The larger question he raises is: What should medicine do when it can't save your life?

He considers difficult decisions doctors and patients have to make about end-of-life care, including when to stop therapy, when to say no to more chemo or to a ventilator because it will only cause more suffering without extending life in a meaningful way. He always writes about what it means when you opt for hospice care. Gawande is a surgeon who also writes about medicine for the New Yorker, where he's a staff writer.

Atul Gawande, welcome back to FRESH AIR.

You know, you write about how so much of the choice about whether to continue with therapy and to go to experimental therapy and how harsh a therapy to enlist for is often left to the patient and their family to decide. But we patients aren't doctors, and we don't have all the research at our fingertips, and it's hard to know.

And as you point out, patients often wait for the doctor to say: There's nothing more I can do for you. And at that point, you stop treatment. But as you point out, there's usually not a point where a doctor says there's nothing more we can do for you because there's always something that can be done. What do you mean by that?

Dr. ATUL GAWANDE (Surgeon; Staff Writer, The New Yorker): Well, it is this interesting evolution. We were this completely paternal profession. We didn't even tell you when we had an incurable condition. You know, we thought that that would just be more than people could handle.

We have moved away from the paternalistic mode of here is what we're going to do, and you don't need to worry your pretty little head about that, to a world that's almost the diametric opposite.

We are willing to throw all of the options out there and just say, you tell us what you want to do, and the options that are there, you know, right up to the end include, you know, if you start having trouble breathing, do we want to put you on the ventilator? Do we want to put you in the intensive care unit?

Your kidneys, when they shut down, you know, shall we put you on dialysis? Should we shock your heart when it stops? A feeding tube when you stop being able to eat? A tracheostomy to keep you on a ventilator as time goes on?

The moment of crisis always comes, and we want medicine to help with many of those steps. We don't want to abandon things that might get us more of the life we want. But medicine's focus, what we do as doctors, is we sacrifice time now for the possibility of prolonged life.

But we all have more, wider values, things we care about besides that. We want to be with others and family. We'd like to be mentally alert as much as possible. We'd like to avoid suffering, and we'd like to spend our last time doing stuff we care about and not just, you know, taking in treatments that make us suffer.

GROSS: Well, what you're talking about is kind of antithetical to a lot of the treatments that we get when we're dying, because those treatments are so debilitating, you're not going to be yourself. You're barely going to be cognizant sometimes by the time you're done with all the treatments.

The likelihood of the real meaningful moments at the end with family are often diminished because the person who is dying can't speak or think clearly anymore. Is that your experience? I mean, I've seen that.

Dr. GAWANDE: Yeah, you know, I walked through our intensive care unit. I had a patient in our medical intensive care unit who I had to see for a surgical consultation, and I ran into someone I'd gone to college and medical school with who happened to be the critical care physician on duty that day. And she had just had it. She felt like - she said, you know, I'm running a warehouse for the dying here, because eight out of the 10 people in her unit that week -in fact, for that month - were people with terminal disease, whether it was end-stage heart failure, end-stage liver failure, end-stage cancer, and in the big picture, she didn't feel like there was really anything she was doing to help improve their lives, and in many ways, felt like she was causing more suffering.

So these were people who were on the ventilator, on dialysis, you know, tracheostomy and feeding tube in this kind of warehoused oblivion, toggling between conscious and not being conscious, and even when they're conscious, they're not really clear about what's going on where and how.

And what's sort of terrifying about it is that these were people who came into the hospital thinking that, well, maybe we'd be able to get through this, and yes, I think I could get home this time. And then the care escalated to the point that they never got to say goodbye or I love you or I'm sorry, and, you know, they've got their husband or wife or other family sitting with them, and they will pass on from this world without ever having realized that, you know what? This was the moment. This was it. And is this way you'd really want it to have happened?

GROSS: How would you, as a doctor, identify what a patient wants at the end of their life?

Dr. GAWANDE: You know, it's interesting. When I started writing this article, I did it because I didn't know how to do that. I didn't really understand, and what struck me was a study I read. It's called the Coping with Cancer Project.

And the Coping with Cancer Project looked at hundreds of patients getting care for end-stage cancer, and the striking thing was two-thirds of them had not had any discussion about what they wanted at the end, despite the fact that they were, on average, they proved to be four months from death.

The one-third that had a discussion with their doctors about their goals for the end were less likely to be in an ICU, less likely to die on a ventilator or be shocked, more likely to take hospice. And the fascinating thing is they suffered less, they were more capable and more alert for longer in their lives, and then six months after they died, their family members were less likely to be suffering from major depression.

I was often in that two-thirds that was steering away from that discussion rather than having it, and I needed to know how to do that.

GROSS: What is that discussion that you're referring to?

Dr. GAWANDE: I met with a woman named Susan Block, who's kind of an expert in these discussions. She's a palliative care specialist at the Dana Farber. And she described a list of things that she has in her head that she tries to go through in the course of the discussions with patients.

And one things she pointed out to me is that this discussion is often one you cannot have just in one moment in time. It's a sequence of things.

And her list was not do you want this chemotherapy or not, or do you want this operation or not. It was: How do you want to spend time as options in your life become limited? How do you want to spend your time? What tradeoffs are you willing to make? What concerns do you really have about what lies ahead here? Do you actually know what your prognosis is? You know that you're dealing with an incurable disease, but do you know, you know, what the timeline often is? And who do you want to have make decisions when you reach the point that you can't?

That series of conversations is incredibly hard, and what makes it even harder is the patient is not the only one who needs to have that conversation. The whole family needs to, because she told me about some research that showed that when patients even know the answers to these questions - and they often haven't really reached that point - two-thirds of the time, they're willing to take treatments they don't actually want if they think that the family wants them to go ahead with it. And so you need to get everybody kind of on board. And that's, you know, that's not often the way we think about it. But when it happens, it goes better.

GROSS: This palliative care specialist who you talked to about end-of-life conversations, she had one of those conversations with her own father when he was dying, and she asked him what level of being alive is tolerable for him. And he said as long as he could eat chocolate ice cream and watch football on TV, it was still worth being alive.

And that helped guide her when she had to make difficult decisions on his behalf about his medical care. So are you conducting these kinds of conversations now with your patients?

Dr. GAWANDE: You know, as a consequence of writing through the article, I'm starting to think about how to walk through it this way. And the unexpected thing to me was that it's not just with my patients, it's with my own family.

Jack Block, her father, 74-year-old professor father, had a spinal cord tumor and had to undergo an operation that had a 20 percent chance of leaving him quadriplegic. And by some - well, you know, it's not entirely happenstance that that's a story I told, because my 75-year-old surgeon father has the same story.

And that story that she described really just rung with me. In the course of writing the article, my father's been with this incurable spinal cord tumor for the last three years. A year ago, it progressed to the point of paralyzing his left hand, and he had to stop his surgery practice.

And then a month ago, it reached a point that he started stumbling, and then one day called me that he wasn't able to stand up from sitting.

He got some steroids that reduced the swelling of the tumor in the short term enough that those capabilities came back. And he was planned for the same operation that Jack Block, Susan Block's father, went through.

And so I - you know, we had a series of conversations, and I remember one of these extremely vividly in my living room, where we went through this conversation. In a way, it was, you know, it brought us closer than we'd ever been, and it was a conversation before any crisis could come.

But he was going to undergo this operation to try to relieve the pressure and keep him from progressing to quadriplegia. And I asked him what tradeoffs he was willing to make. I asked him almost the same question: What are you willing to go through to be alive here?

And I told him about Jack Block's answer, you know, if I can eat chocolate ice cream and watch football on TV, that would be good enough for me. He said that's not good enough for me.

He said, you know, I'm social. I need to be with people. It's - and he's a surgeon. I think he needs to feel a little more control, that being on a feeding tube, no question, that's not in there. But even if I can eat and watch television, but if I'm quadriplegic and I can't interact and get out in the world and do those things and I have this incurable tumor anyway that will, with time, get me, he said, don't wake me up if, after the surgery, I'm quadriplegic. Don't do the ventilator. Don't do the tracheostomy. Don't do the feeding tube.

And I understood it. The thinking through that the writing made me go through and talking to these palliative care specialists and understanding what great care could look like, it has affected how I treat my patients, but it's also affecting how I handle things with my dad.

Now, the good news: He got through the operation, a nine-hour operation to create more space in his spinal cord for the tumor to grow, and unbelievably, he just did fabulously. He was eating corn flakes on the third day after surgery, sitting up in bed. He was home eight days after the operation, and we're all thinking about, okay, we've got ourselves another year or two. What's on our list? What do we want to do?

(Break)

GROSS: So, many people at the end now choose hospice, and when you choose hospice, it often means giving up on other medical care that you could get. What types of care do you have to decline from that point on?

Dr. GAWANDE: You tend to decline things like calling 911 and going to an emergency room if something goes wrong. You are not going in to see the oncologist about the chemotherapy or going in to see the surgeon about whether you'll try to take out part of the tumor.

You are still seeing doctors and nurses about whether there are things that can be done to make your life better, and that was a surprise to me. I went on, walking around on visits with a hospice nurse, because my mental image of hospice was just it's a morphine drip.

It was not what I found, which was a nurse who was helping people address, well, how's your breathing, and what can we do to make your breathing as good as it can be, given the circumstances. Or what do we do to make sure we have you on your heart medications to try to prevent a heart attack?

All of those more complicated steps of asking, you know, how do we get you out for the weekend when we want to get you out for the weekend, that is part of what they do.

GROSS: So there is an experiment going on now that you write about that I thought was very interesting. It's called the concurrent care experimental program. Would you describe that?

Dr. GAWANDE: Yeah, AETNA started it, the insurance company, and they recognized what we recognize everywhere, that people with terminal disease, at the end, only a minority choose hospice. And if they choose hospice, it's just in the last few days, at the most.

And so what they did is they said, well, let's offer hospice to people without making them sign the form that says I'm giving up my chemotherapy, the option to go to the emergency room or the surgeon or the radiation and so on. But they still sent the hospice nurse to visit at home and ask all the questions about, you know, how can we make your life better now?

And so no surprise, enrollment in hospice went from 28 percent for those families to 70 percent. But the real surprise was that once they had both available to them, they went to the hospital less. They were less likely to die in the ICU. They spent 25 percent less money at the end of life, and the families were happier.

And what it seemed to be was that the either-or divide, in order to get good care for what your goals are other than prolonging life, you have to give up on the idea of prolonging life, you know, that - it blew up that idea. It said you could try what they called concurrent care. It could use a sexier name than that, but - and that has been now studied enough to see that this has been replicated.

GROSS: Now, the kind of end-of-life conversation that you were talking about earlier that you think doctors should have with patients - in which the patients and their families can clarify what they want the end of their life to be like and what physical compromises they're willing to go through in order to have treatment and what they don't want to go through - are those kinds of conversations the things that were described as death panels during the debate about health insurance?

Dr. GAWANDE: Yeah. The - I mean, it got mutated into that. The health reform bill had funding to have those kinds of discussions. These discussions at the end of life are long, they're multiple, and sometimes they're not with the patient themselves, but with the family members.

I describe one oncologist discussing the care for a 29-year-old with a brain tumor that was at end-stage. And he'd been through two rounds of chemotherapy and radiation, and he was ready to stop, but his family wasn't.

And the oncologist had separate visits for the father - actually visited the father at home and talked through, you know, every possible option and what ultimately needed to be done, which was that the family needed to be there for their son.

And that's not covered by insurance. You know, she said to me: I can't tell you how much easier it would've been to just sign him up for another round of chemotherapy - and, by the way, she would've been paid better.

The health reform bill had a provision to allow for these doctors to have these conversations and fund them for them to happen, and it was stripped out because of the argument that this amounted to a death panel.

GROSS: And were you angry about that?

Dr. GAWANDE: You know, at the time, I just thought it was kind of ridiculous. I knew it was an exaggeration, but this is politics, and some of that is bound to happen.

What I didn't appreciate until I really tried to delve into writing about, you know, what do we do, what's the most beneficial thing we can do to make end-of-life care better and cope with the costliness of it, that's where I realized, wow, this was the pivot of it. This is where it can happen.

Now, funding for those discussions isn't the only thing that needs to happen. The ability to even change medical training, to walk doctors - and also, you know, non-doctors, even non-clinicians - through how to have these conversations well is going to be a crucial part of being able to transform a system of care to not just be about the time we have.

The most fascinating thing about it, though, is that we see this as all about tradeoffs. You know, are we going to give up $80,000 drugs that would give us two months of life? The reality is that at the end, the way we care for people probably worsens their life and shortens their life.

A study of 5,000 Medicare patients that match people who chose hospice against people who didn't choose hospice found that those who chose hospice didn't die any sooner than the people who chose to stick with going to the hospital and so on.

And furthermore, for conditions like lung cancer and heart failure, those patients actually live longer in the end, by weeks - in the case of heart failure, three months longer, and that reveals to us that we have some dysfunctional decision-making towards the end, where that fourth round of chemotherapy is certainly not buying them time and is probably stealing not just quality of life, but stealing time from people.

GROSS: Atul Gawande, thank you very much.

Dr. GAWANDE: Thank you.

GROSS: Dr. Atul Gawande's article "Letting Go: What Should Medicine Do When it Can't Save Your Life?" is published in the current edition of the New Yorker. You'll find a link to the article on our website, freshair.npr.org.

I'm Terry Gross, and this is FRESH AIR. Transcript provided by NPR, Copyright NPR.