The United States has a problem when it comes to conversations around death and dying, says Dr. Atul Gawande. Patients with life-threatening illnesses tend to focus on how to beat the steep odds against them, he says, without hearing from their doctors about how certain kinds of treatment might actually worsen their remaining time alive. It’s understandable, says Gawande, but “hope is not a plan.”
For Gawande, a New Yorker writer and a renowned surgeon at Boston’s Brigham and Women’s Hospital and the Dana-Farber Cancer Institute, too many questions are going unasked. Questions like: What are your priorities if your time is limited? What are your goals for treatment? What are your fears? And what trade-offs are you willing to accept as a result of your care?
In the below interview from the FRONTLINE film Being Mortal — based on his best-selling book of the same name — Gawande discusses how his regrets over care he provided some patients, as well as the death of his own father, helped him to realize that the goal of medicine should not be a good death, but rather “a good life to the very end.”
This is the edited transcript of a two-part interview conducted on July 12, 2014 and Sept. 14, 2014.
As a doctor, do you find that [peers] are motivated by patients’ expectations of extending life?
What happens when you get sick is that you’re governed most of all by your fears, and of course your biggest fear is that you might die. People are becoming more aware of the ways in which their care can take away other things that sometimes are even more important to them, and those things can be their ability to be aware and communicate with others; their ability to be at home and in control of their lives; their ability to interact and work and do things important to them. …
There’s a lot of folks for whom there’s nothing else except, “Look whatever it takes, I want to be aggressive, and give me everything that we’ve got,” as the starting point, but these are journeys. The first round of effort succeeds, then you’re happy. It’s really what happens when the first round of what you think is going to work doesn’t work, and then you get to the second round, and then you get to the third round. And somewhere around there your life has become your disease and your treatment, and the possibilities that you’re going to win the lottery with your ticket start to diminish. That’s where most people start to be concerned about losing things that are really important to them. But they have a hard time talking about it with their families, sometimes have a hard time talking about it with themselves, and certainly have a hard time talking about it with their doctors.
Why is that?
Because we’re afraid of talking to the patient about these problems as well. We’re afraid of our anxieties. Our anxieties include wanting to seem competent — and to us competence means “I can fix this.” In fact, there’s often a kind of implicit promise: I’m going to be able to fix this. I’m going to certainly give you the best shot you can have. Nobody could have given you a better shot. And then when things aren’t working, part of your anxiety is: “Was there something I missed? Was there anything else I could have done?”
A second anxiety is not only one of competence, it’s anxiety about talking to people about death, about the possibility that this won’t work. There’s a lot of emotion in the room, when people can cry or get angry, and we don’t know what to do with that. …
It’s kind of surprising to hear that doctors can’t handle this.
I wouldn’t say that doctors don’t feel they can’t handle it. There’s a couple ways that I see it playing out. One is that a lot of doctors feel like: I know how to have this conversation. I know exactly what I’m doing. I tell people: “This could go badly. You could die. You could end up in the intensive care unit. But the other alternative is, you’re going to die anyway.” So we’ve laid it out: What do you want to choose? …
The big difference in the way that palliative care doctors are asking us to have these conversations with patients is to move from the facts and figures, the risks and the benefits to helping people cope with their anxieties about illness and about death. And that means helping them articulate their goals, which comes out of a conversation about: Well, what do you understand the prognosis to be for you? What do you think are your fears? What are your goals? What are the trade-offs you’re willing to make in your life and not willing to make in your life at this point?
Those are hard conversations. I think partly we haven’t had the words. We hadn’t literally known the questions to ask the right way. …
What you’re saying doesn’t seem that radical to me, but it is kind of radical in this context of medicine.
The difference in how to have a conversation about the end of people’s lives is incredibly radical for us in medicine. The way we have increasingly evolved to talk about this conversation has gone from a kind of 1950s mentality which was very paternalistic. You know, if you could have the red pill or the blue pill, we would say, “Oh, you know, the red pill is the best of all for you,” and we might not even tell you about the blue pill, because in the 1950s we said, “This is what you need.”
By the 1980s, 1990s, it had become instead a kind of retail transaction: “Well, I’ve got a red pill and a blue pill, and here is the advantages of the red pill, and here’s the advantages of the blue pill. Which one do you want?” And then patients will end up asking that uncomfortable question: “Well, which one would you take?” Half the time the doctors would push back and say: “No, no, no, this is your decision. It’s not my decision. I’m just selling the pills.”
“What is turning out to be the powerful way of actually having this conversation is, you put the pills down, and you talk to the patient and you say: ‘What’s really important in your life?'”
What is turning out to be the powerful way of actually having this conversation is, you put the pills down, and you talk to the patient and you say: “What’s really important in your life? What is more important to you than anything, besides living longer? What are you scared of? What are the trade-offs you’re willing to make? And now that I understand what you care about, there are two pills, and I’m going to recommend this one, because I think this fits the goals you’re trying to achieve.”
For some people it’s the red pill because they want fewer side effects. They don’t want to be sleeping 24 hours a day or have to get treated in the hospital and all of those things. For another person: “No, no, no, I want the blue pill. It’s going to make me sick as a dog, but I feel like I’ve got my best chance with that, and I’m willing to give up what comes along with that.” OK. I can recommend the blue pill because I understand you better, and now we can have a conversation.
Tell me again why that’s radical.
Having this kind of conversation, this different kind of conversation, is radical because number one, 98 percent of the time it’s not what happens. It’s radical because in order to have that conversation, the doctor is spending more than half of the time listening rather than talking. They’re asking questions rather than waiting for your questions. I know that sounds small. It is not the experience of an average person going to see a doctor that they’re having a genuine conversation. …
I’ve had to learn that the hard way. I’ve had to learn that because of patients with whom, you know, they did not end up with a good experience at all. And then I’ve had to learn it the hard way because of my dad and the decisions we had to go through with his cancer, and seeing how, for long stretches of time, it was hard for him to get anything that was helping him pursue what he cared about. …
“AN AHA MOMENT”
I want to know how this all started for you. …
… When I started out in my training in surgery, you discover that all the stuff you learned about in the books in medical school is really just a tiny little bit of what it means to be good at doing our jobs. And from my first book onward, it’s been a series of stories of grappling with how being good at what we do in medicine is radically changing in many, many ways. It’s not just about how smart you are anymore as a doctor. It’s about how you have to be able to work with teams, and how mistakes get made and how you handle them, and how you learned and … lots of things.
Among the most uncomfortable difficulties was grappling with those cases where we couldn’t solve the problem. So in medicine, your first fear as a new doctor is that you’re supposed to be able to fix a problem: Do I know how to diagnose properly? Do I know how to treat properly? Have I got all those things down well?
But there are then the problems of how do you deal with the unfixable problems in medicine? And the two big unfixables are aging and dying. You know, they’re not — you can’t fix those. …
Did that start with one patient?
I don’t think it started with one patient, but I have many stories, and I wrote about some of them early on. In one of the very first essays I wrote, called “Whose Body Is It Anyway?,” the key character was a guy I called Lazaroff who was an elderly man dying of prostate cancer. It had spread to his spine. When it did paralyze his lower legs, made him incontinent, and he suddenly ended up in the emergency room when he couldn’t manage it in his apartment anymore, and the next thing we’re doing is signing him up for a nine-hour huge spinal operation to remove the tumor in his spine, out of what he hoped would be getting him back to living in his apartment, but that was never going to happen. And in fact I spent two weeks taking care of him as he died a terrible death. …
But not only did he just make a bad decision, you felt in your writing to say that you gave him bad counsel.
… What I see now is how badly we handled the decision. When we sat and talked with him, we had not been able to understand what was important to him, what his life was like, and to have any kind of frame on being able to explain whether this option was likely to give him anything that he really cared about. We knew this was not going to give him longer life. We knew it was not going to get him back to his apartment and that he had a very good chance it would make his life worse without ever adding any time to his life. When I wrote it, even then I knew there wasn’t something very satisfying about the conclusions I was coming to out of that kind of case. …
I wrote about many other cases since then, and the first time it really started to feel like an aha moment was when I began talking to palliative care doctors years later for a piece I wrote called “Letting Go,” about a woman named Sara Monopoli who I took care of, helped take [care] of, who was diagnosed with Stage IV lung cancer during the eighth month of her pregnancy at the age of 34. She died less than a year after the diagnosis.
Talking to palliative care doctors about how I might have had my conversations differently with her was a revelation — the trying to come to a kind of joint effort to first talk about what the prognosis is and isn’t, and then a joint effort to identify what’s really important in a person’s life and make decisions according to those. That’s what I began doing after writing that piece, and found it was transforming the way I practiced, and then, unexpectedly, transformed the way the care went with my own father.
So the Monopoli case you actually wrote when you saw her before her treatment. It was not specifically related to the cancer; it was her thyroid.
That’s right. It was part of her care, because she had two cancers. … She had a thyroid cancer that had metastasized in her neck. It was operable. I could have taken it out, but the operation was not going to provide her any benefit because the lung cancer would kill her before the thyroid cancer made any difference in her life. And trying to even have a conversation that said that, I just wasn’t capable of that.
At one point you were telling her that — almost as a default, it seems like — that there were experimental protocols that might be out there, and you said that was just your fantasy.
The first thing I told her was we shouldn’t stop the chemotherapy for the time of the surgery, so let’s have you come back in six weeks and let’s see where this is and see how the chemotherapy’s going. All I was doing was putting off the real conversation about it. Then she’s declining from appointment to appointment. You know, the first one she’s coming in walking and happy. Three, four appointments later, she’s in a wheelchair on oxygen, and we’re still discussing, “When are we going to do this surgery?” And then I start trotting out a fantasy like, “Well, maybe the experimental therapy that you’re going to try next will also treat the thyroid cancer,” which you know, it was your fantasy. It just wasn’t true.
Why did you say it?
Part of me was saying it because in the moment I’m — you know, she was young; she’s enthusiastic; she wants to tackle this. You don’t want to be a downer. So you’re looking, you’re grasping for a straw that says, “Well, there’s something here that’s going to be beneficial.”
But I also knew that just saying to her, “Well, we can take this thyroid cancer out,” first of all, I was subjecting her to pain, to some significant risks of the operation and an infinitesimal chance that this was going to be of any benefit at all. This was mostly harm, very little likelihood to benefit. …
Some part of me was still in the back of my mind saying, well, Stage IV lung cancer, we know it’s not curable, but suppose she’s the one that somehow gets cured. Like there is this tiny, tiny long tail that maybe she’s the one in it, so therefore we should do all these things to her. But having any kind of discussion that would begin to say, “Look, you probably only have a few months to live. What do we do to make the best of that time without giving up on the options that you have?,” I wasn’t ready to have that conversation.
It seems to me that in one way you’re successful. You got her off the thyroid surgery, right?
I was able to keep her off the thyroid train.
So why do you feel so bad about it?
I feel badly about it in two ways. One was seeing the course we were on, she still ended up on four different rounds of chemotherapy and experimental therapy, whole brain radiation, and died within eight months. And all of the data is that those last rounds of therapy probably shortened her life rather than lengthened it.
“Having any kind of discussion that would begin to say, ‘Look, you probably only have a few months to live. What do we do to make the best of that time without giving up on the options that you have?’ … I wasn’t ready to have that conversation.”
I held her off from one part of the harm. But overall, we didn’t manage to handle that terribly well. She did not have a peaceful end where she could be in control of her last time and with some ability to achieve some of the things that might have been her priorities in her last few weeks.
This was one of the most difficult circumstances. You have a young woman with a brand-new baby, and of course everybody is fighting for every chance that she’s got. But when we start grasping for “doing things,” when I myself am wanting to grasp for doing something, it’s not so much that I felt bad about it; it felt like a revelation in that, here was a case which I could unpack enough to understand why do we always go off the rails? And is there really any way out of it?
In retrospect, that was a lost opportunity.
What was interesting [to] me was how uncomfortable I was and how unable I was to deal well with her circumstances, when over the years, this is not uncommon that I have patients who are facing serious illness, life-threatening, and have to think through options that include the possibility that it doesn’t work. … So it’s less to me about feeling that I need expiation from my sins and much more like if I’m going to be good at this job, helping people deal with illness, then this is part of our task, and we’re really bad at it. …
This article that you’ve written, “Letting Go,” was it actually during that article that you started to understand this, or was the article because of that?
One of the reasons I write is [because] it gives me my chance to dive into problems that I’m very confused about. I’ve written about what are we supposed to do about the cost of health care? I’ve written about why is the malpractice system so crazy, and what’s the way it should be? I’ve written about why do we itch? If it’s confusing or interesting to me, writing is my way of diving in and figuring out what to at least think about it. And this was one of the big ones. What are we supposed to do when I have a patient in front of me who, OK, we’ve tried the first round of treatment, we’ve tried the second round of treatment, and it’s not working. Now what’s supposed to happen? …
It also turned out that around that time was when my father had his own cancer. …
A SURPRISE DIAGNOSIS
Let’s talk about your dad. Tell me about him.
My dad came from a little farming village in the middle of India. It’s like the Iowa of India. It’s 400 miles to the east of Mumbai, a village of about 5,000 people. His father had 13 children, three wives, and they raised wheat and sugarcane — you know, thatched mud huts, no running water. When I first visited the village when I was a kid, and we went back, it felt like it could be any century. His mother died from malaria when he was about 10 in front of him. She suffered through this. He was convinced that there were treatments out there for her, which in fact there were. And he’d never seen a doctor, never heard of a doctor, but that was when he decided that’s what he wanted to be a doctor. …
When was your dad diagnosed, and where were you at the moment?
My dad had started to have pain in the back of his neck, and it would shoot down his left hand. He got an X-ray — this was about 2004 — and the X-ray just showed some arthritis, and he didn’t think too much of it. But then he started to get numbness and tingling in his fingers, and that was a little more concerning. He got an MRI. His physician ordered it thinking that maybe he had a bulging disc, and he might need some disc surgery, and instead what they found was a tumor, a huge tumor. It was some kind of mass that was growing in the middle of the spinal cord, expanding outward. It extended all the way up to his brain stem, all the way down the length of his neck, to the first couple vertebrae in his chest.
So he called me up. He e-mailed the digital files of the images in the way that we do nowadays. And so we had a call —
He e-mailed you? Did you open them before you talked to him?
Tell me about that.
Well, I opened them up, and it’s a huge mass. And it’s concerning, but it’s still not in my mind that I’m thinking, “Oh, this is a death sentence.”
You see big tumors all the time, and you take them out. I’m a surgeon; this is what we do. So we get on the phone … And as we’re piecing it together over the phone together, we’re kind of realizing like, this is right in the middle of the spinal cord, so it doesn’t look like the kind of thing that you can just get out. …
… What’s striking to me about the conversation is that you approach it in a very scientific manner, and there’s something hovering that neither of you want to acknowledge.
Yeah, you know, we’re two surgeons looking at a mass, it’s like two carpenters looking at a house. You’re not saying, “Ah, yeah, we can’t fix this.” We’re thinking about, “How do you fix this?” But this is one where every time we’d start coming up against it, it felt like, oh my God, this could be an unfixable problem, and neither one of us wants to say that. But at the end of that conversation, I’m thinking this could be a life-threatening problem. I’m sure he was thinking that.
… And how quickly are you falling into consultations with other doctors?
Within a couple of weeks. …
Tell me about those visits.
They were night and day in some respects and identical in others. They both recommended the same operation. Chemotherapy and radiation are not good for a tumor like this. It could be a benign kind; it could be a malignant kind. They both suggested therefore that you needed to operate to at least take a biopsy, take out however much you could. …
The surgeon at my hospital said this should be done right away, that he would not wait on this, that it had already begun to paralyze his hand and it could do a lot worse if he just let it go. He would eventually become quadriplegic from this, and that therefore he needed to operate.
The other surgeon, Dr. [Ed] Benzel in Cleveland said, well, it’s more ambiguous. These tumors grow very slowly; you don’t suddenly wake up a quadriplegic. You have a stepwise progression — maybe the paralysis would go up one arm; he could end up having weakness in the other arm or weakness in the leg — and therefore wanted to discuss what the options and timing might be with my dad.
There’s also a completely different style. And that’s probably what my dad responded to more than anything. The surgeon at my hospital was very busy, took the appointment standing up for most of it, and rattled off, “Here’s what the situation is; here’s what the concerns are.” He’d recommend surgery. My dad had a lot of questions that sometimes a surgeon might have that a patient might not have. …
Very quickly the message was, “Stop asking your annoying questions.” The surgeon sort of cut him short and said: “Look, you either want to have this operation or you don’t. It’s your choice. I think you ought to have it right away, but if you don’t that’s your choice.” And my father I think decided right then that whatever the situation was, this wasn’t going to be his surgeon.
… There’s something about tennis that Benzel kept mentioning. How does tennis fit into this?
Yeah, so [my father’s] tennis racquet started flying out of his hand when he was on the court. He was starting to find it more difficult to move. He lost the ability to serve overhand a year or two before, but it was now coming to the point where it was starting to reach where he couldn’t be with his friends and participate in this significant part of his life. That loss of function, it was symbolic. The fact that he couldn’t play tennis anymore was because he was losing his ability to walk, losing the ability to do certain things steadily. That meant he was losing control of his life in multiple ways.
That was enough for him to say, “OK, I’ll consider the operation” — not just consider, go through with it. The operation is a big operation. … It was an all-day procedure. He thought there was — he meaning Dr. Benzel — talked about there being a one-in-four, one-in-five chance of being quadriplegic coming out of this or having a major complication to his heart or lungs. In fact, two hours into the procedure he came out to tell us that they’d had to stop the procedure because my dad’s heart had gone into an unusual abnormal rhythm, beating at more than 150 beats a minute. They nearly had to shock him as he lost blood pressure from it. They were able to get medication to convert the rhythm. He possibly had a heart attack, and [he] came out asking us whether they should go ahead with the surgery or stop, because of his heart. …
Did you know what to say at that point?
This was an important moment to me, because we’d started to have the conversation [while] I was in the middle of writing “Letting Go.” I remember writing about one case in there, which was [palliative care specialist] Susan Block’s father. Her father had had a spinal cord tumor, and the questions she had asked her father before he went into surgery was, what are your fears if this goes wrong? What are your goals? What are the trade-offs you’re willing to make and not willing to make? And he said — it’s very memorable to me — he said, “I’m willing to undergo almost anything as long as I can still watch football on television and eat chocolate ice cream.”
It was a total surprise to Susan Block, because she’d never seen her dad watch football on television. He’s a professor at Berkeley of psychology. But this had emerged as one marker of what was good enough for him. And my dad and my mom and I had sat in my living room in Boston that year before, when he’d come for the meeting with the neurosurgeon, and we’d had a discussion about exactly those things.
I had the conversation that I’d only just started learning how to have, which was asking: What’s your understanding of your prognosis from this? What are the fears that you have? What are the goals that you have? He cried, and my mom cried, and I cried, and we talked, and he told us that it was not good enough for him to just be able to watch football on television and eat chocolate ice cream. For him, what he loved was interaction with people, and he wanted to be able to be social. He did not want a situation where if you’re quadriplegic you could end up on a ventilator to live. He did not like the possibility of losing that much control over his life and needing total care. He said, “Let me die if that should happen.”
So when Ed Benzel came out of that operating room saying that something had gone wrong, at least temporarily, with his heart, that they could go ahead with the surgery or stop it and halt, the cardiologist thought it was OK to go ahead, but there was some uncertainty. I asked him: “For my father, the most important thing for him is that he has his best chance at avoiding being quadriplegic. Which one is going to give him his best chance at avoiding being quadriplegic?” And he said going ahead with the surgery now. So that’s what we did. …
AFTER THE FIRST SURGERY
… So you got through the surgery in 2010?
The surgery was in June 2010. My father spent just a few days in the hospital and then a few weeks in a rehab hospital still in Cleveland, but by late July was home and doing well. He was walking. He had traded constant pain now in his neck for a pain-free neck that was welded stiff, and to him that was a perfectly fine trade-off. He was sleeping through the night — his life had improved. Once he got through it, his life had improved, and he was going to get to have much longer without being quadriplegic. The difficult question then came of whether he wanted to undergo radiation. They did a biopsy, and it came back as an astrocytoma, which is a kind of cancer of the brain and spinal cord. …
We moved from Dr. Benzel to a radiation oncologist, who was very nice, very good, but didn’t have that same way of figuring out where my father’s fears and anxieties were, and his goals were, and simply said, “How can you not take the radiation?” And honestly I was in the same camp, too. What little I could read about it suggested you could get some benefit from it, that it probably wouldn’t make things worse. …
“He cried, and my mom cried, and I cried, and we talked, and he told us that it was not good enough for him to just be able to watch football on television and eat chocolate ice cream.”
In October of that year he began the radiation therapy. It was every day for something like six weeks. … Then he had to take narcotics and other things to get through it, and that was making him groggy, and he began sleeping all day. The radiation therapy after a couple weeks was also taking a lot of energy out of him. Just the doses were knocking him down. And then, two or three or four weeks into it, the radiation into his brain stem was causing a constant ringing, a loud ringing in his ears, and they’d say, “Oh, that’s not uncommon; that usually gets better.” And then it took away his taste; everything began to taste like metal to him. That bothered him a lot. He couldn’t enjoy eating anymore. He began to lose weight. He lost almost 30 pounds from the time that his surgery was done through his radiation therapy. …
Surgery to him was manageable; this was miserable. … So he wasn’t sure at the end of all of that that the trade-off was worth it for how much it might have benefited him. But then to make matters worse, it didn’t benefit him. There was swelling of the tumor from the radiation itself that they thought would be temporary. Then six months into it, [we] got the MRI showing that the tumor now had not only swelled, but actually grown even more into his brain stem.
… Did the doctors approach this as palliative, or did they approach it as, you know, the full house of attack on this one, with radiation, etc.?
The feeling was that eventually you would do surgery, radiation, and chemotherapy, and all of them together would be able to make this into something that was manageable. And the price of getting all of that extra time might be some pain and suffering now for some gain later.
That’s including Benzel?
Yes, but Benzel’s take on it was also that the treatment itself can make your life worse, and so we should be weighing this against the benefits, against the uncertainty, and against the harm to your life, and that he didn’t see this in completely heroic terms. He saw this in more limited terms, that we have things that seem to be able to produce some benefit. …
Come March of 2011, [the tumor] was growing. His symptoms were getting worse. He was starting to have falls at home because his legs were starting to become weak. You’d read these terrible words in the report saying that the tumor had extended into his midbrain. That doesn’t sound good. So at that point the suggestion was that we should go see the oncologist and see what options there might be for chemotherapy.
And I at this point didn’t understand what the prognosis was. When we saw the oncologist, it felt like a very different conversation than the one with Dr. Benzel. It was one of those, just a menu of, a phone book of options that he could go through for chemotherapy. I mean, there were eight or nine different chemotherapy options that were laid out for us. I can’t even name all of them. …
You’re in regular-patient land now. You’ve started out with this ultra-clinical approach, and now you’re swimming in the waters that we all swim in.
Yeah, there was a certain “I don’t know my temozolomide from my carboplatin.” I don’t know the difference between these drugs. I don’t know what it’s like to be on them. I don’t know what benefit there is. I’ve seen the upsides and the downsides in my patients, and my dad certainly has, too.
He also has gone through the experience of what the radiation oncologist thought was going to be a mild treatment, so going into see the chemotherapy doctors about drugs that might have more serious consequence, more serious side effects, that was alarming to him. And what he wanted to know was how much benefit would there really be from these things? And it was in the back of his mind: What if I don’t take any of these drugs?
How did you know it was in the back of his mind?
Because at that visit it moved to the front of his mind, because he said — you know, the oncologist lays out eight or nine different options, and we’re swimming in all of it. She recommends a combination of two of them, and we didn’t quite understand why. And my dad says, “Well, what if I don’t take any?”
And she said, “Well, that’s your choice.” And I didn’t think that was very helpful. I felt like she made it worse. She then started talking about how you really should think about taking the chemotherapy. Who knows? You could be playing tennis by the end of the summer. I mean, that was crazy. That was completely crazy talk. This guy’s on his way, potentially within weeks, to being paralyzed. What we’d hope for is we’d just stop the tumor long enough that he doesn’t end up in a wheelchair.
It’s funny. You just said earlier in this conversation that you’d said the same sort of far-fetched things to your own patients, too.
And you were angered at it, at the time.
No, it pissed me off. It was holding out a hope that was not a realistic hope in order to get him to take the chemotherapy.
… So, I mean, it’s —
Totally human. Look. The oncologist was being totally human. And the oncologist was talking to my dad [in the same way] I had been talking to my patients for 10 years. …
I then pushed, I asked my mom and dad, I said, “Can I ask her about what your prognosis really is?” And he said, “OK, go ahead.”
So I asked her: “So what is his prognosis if he doesn’t take [the chemotherapy]? What will happen to him? How long does he have if he doesn’t take the chemotherapy?” And she was very unfathomable answering that. She said, “Well, we don’t have all the data, and I can’t really say.”
So I say, “Well, what’s the longest you’ve seen somebody live who doesn’t take therapy, and what’s the shortest in a situation like this?” And she said, “Well, the shortest I’ve seen is three months; the longest is three years.” And then I said, “Well, if they take the chemotherapy, what’s the longest that, therefore, you’ve seen people go?” She said: “Well, it’s still about three years. But more people are closer to the three years.”
More people are closer to three years?
In other words, if the shortest she’s seen people who don’t get the therapy is three months to three years, well, if you take the chemotherapy it still might be three years, but you have more people who live longer, live closer to three years than closer to three months. So you might move up the scale a little bit.
And there were a couple things that were really revealing and helpful about that, even though it was unnerving. One was, we were still in the back of our mind thinking, is there any way to get 10 years out of this? Any more? She basically was saying no, and we needed to know that. And I wish it didn’t take prying it out, but it was very helpful. Sobering, sobering.
My dad and mom found that really hard. But it shifted how he began thinking about it. [It] sort of cemented him against the chemotherapy, and that was the other value of it, that he began really thinking hard about what he would be able to do, and what he wanted to do in order to have as good a life as he could with what time he had.
… What was your father’s decision?
He decided at that point that he didn’t want to decide. He said: “Look, let me go think about all of the options. We’ve written them down.” And she prescribed for him a steroid, which was sort of the lowest-grade option he could take to at least temporarily reduce the size of the tumor, control the size of the tumor. …
As it would turn out, he would start having falls within a couple weeks after that. He had a hard time just with the steroids which, again, was supposed to be the mild treatment, but it made him anxious, it made him have difficulty with sleeping. He was also having pain problems, and he was needing to escalate on his pain medication. It was getting harder and harder, and he was heading in that direction.
Let’s jump ahead to the pneumonia incident. Tell me where you were when you first found out.
I was driving down 95 with my family from Boston headed to New York and onward to Virginia, and my mother called and said my father had become unresponsive that morning. She tried to wake him up, and he was breathing, but he wouldn’t come to. She thought it might be a drug overdose from the narcotics that he’d been taking and took him to the hospital. At the hospital they tried to reverse the narcotics with drugs, and that didn’t wake him up, and now she didn’t know what to do.
They were asking should they put him on a ventilator, and she said she knew that he didn’t want that, and so they weren’t doing that, but his blood pressure was barely detectable. His oxygen level was only 70 percent — normal is over 95 percent — so that is not a survivable oxygen level, and it had been that way for more than a hour, she said. So I don’t know even if we could get him back, what kind of person he could even emerge to come back being. Felt like this was it.
An X-ray showed pneumonia, and that may well have been part of what precipitated matters, so they started antibiotics and fluids and were going to put him in a room, just trying to keep him comfortable. I called my sister, and she started making plane reservations. I went to the nearest airport and got on the first plane I could get back home to Columbus, Ohio. By the time we got there, in fact my mother calls me while I’m waiting at the gate, and says: “He’s back. He’s awake. It’s a miracle.” …
THE FINAL DAYS
… What happened after that?
Came home, and he set the priorities. He agreed with my mom to take antibiotics as an oral pill at home, just to get home, and then he didn’t take the antibiotic. He didn’t want that. He wanted to be able to see people as much as he could. He wanted to have his computer and Skype with family.
And then he would have long periods where he would just be knocked out — hours a day, not just sleeping. Sometimes his breathing would just seem to stop. For 30 seconds, you’d think, “Oh my God, this is it.” And then he’d gasp. It would be this deep, breathing gasp like someone who’d just come out from under the water. And then he’d wake up and say, “I’m hungry.”
… And then what was the end?
More and more of each day was spent with him unconscious, more or less. He would often wake up in pain, and he wanted us to be sure he got pain medication. I remember at one point we were, my sister and I had him, he had sweated through his clothes, and so we were changing his clothes. We had taken off his shirt. We were giving him a bath with a warm cloth, and he was almost like dead weight. He was just breathing these really slow breaths, and then we suddenly realized his eyes were open, and he was watching us, and he was back with us again. He’d surface for these periods in time, and we’d say, “Are you doing all right?” And he’d say, “Yeah, I’m doing all right.” “Any pain?” “No pain, doing OK.”
So then we got his shirt on, and we said, “Want to have something to eat?,” and he said, “Sure.” So we took him in his wheelchair to the dining table, and my mom said, “Aren’t you glad to be here with us again?,” and he said that he wasn’t so sure. He said, “This” — and he was pointing at his food — “this is prolonging the process, isn’t it?” And I said, “You mean dying?” And he said: “Yes, when I’m eating, I’m prolonging the process. I don’t want to prolong it.” And that broke my mother’s heart. My mother was crying, and she said: “Come on, Ram, we’re so happy to have you with us. Aren’t you happy to be here with us even for just a little while longer?”
“My mother was crying, and she said: ‘Come on, Ram, we’re so happy to have you with us. Aren’t you happy to be here with us even for just a little while longer?’ And he just said, ‘I don’t know.'”
And he just said, “I don’t know.” “It’s so hard,” he said, “that it feels like it’s just prolonging the process.” And for him psychologically it was painful. The physical pain was bad, but the worst part was the psychological pain of it not ending, just prolonging, and that’s what he was saying. It was hard for all of us to hear, but it was very clear to me that I needed to give him his pain medication so he never woke up in pain. And that for us, it was these little moments of grace, these little morsels of life that we got from him. But for him, the act of sleeping was peace.
So on the last day my mother was drinking tea, reading the Athens Messenger, and my sister was working on her computer, and I was reading a book or writing in my notebook, some kind of work or another, and I noticed once again that his breathing stopped. There was one beat, and then another, and then another. Each time after about 30 seconds, you’d think this might be the moment he’s going to breathe again. But then a minute passed, and he didn’t, and I turned to my mother and my sister, and I said, “I think this was it.” And it was.
So that was a peaceful ending, in the end, for him?
… I don’t know whether I believe in a good death. There’s lots of things that aren’t dignified about dying. You know, he soiled his bed; we had to put a urinary catheter in him when he became so paralyzed he couldn’t pee anymore. He was almost shrinking in front of us.
But you can have, within the parameters nature gives you, some idea of a good life to the very end, and he was able to guide to the idea of what a good life was to the very end. And the hospice people were, too. … We had the help and the medications to make it so most of the suffering was under control, and we were just there with him and grabbing the moments that we could, and we didn’t flog him to the end.
I’ll tell you the big deal to me. So many people I see, their death comes as a complete surprise to the family and to themselves. They end up in the ICU. They’re on the ventilator, they never become conscious again, and they didn’t know it was coming. It’s like a week ago, we put him on a machine and then never come off and never had a chance to say goodbye to anybody.
My dad Skyped with everybody, to his village in India. He had me and my sister come there and be with him. We saw where it was going even weeks ahead without quite knowing when it was going to happen, and he remained in control of the priorities that were most important to him. That’s living as good as you can to the very end.
A LAST GOODBYE
Tell me about your trip to Varanasi.
My dad had made his wishes for what his life would be like to the very end, very clear to us, even for what should happen after the very end. He wanted to be cremated in the traditional Indian way, and he wanted his ashes spread in three places in the world: in our hometown of Athens, Ohio; in his village; and then in a very traditional way on the Ganges River … It’s been the tradition for thousands of years.
So we took him, we took his ashes, my sister and my mother and I, to the ancient city of Varanasi, one of the oldest cities in the world, on the banks of the Ganges River, with a swami and a boatman taking us out in a dingy, and it was an amazing thing. …
There was something about the ritual of the same thing that families have been going through for thousands of years, and we were doing it. You could feel the almost chain, the links of the hands across the generations, and there was some sense more than in the village and in Ohio when we spread the ashes, some sense when we did it on the Ganges, that he was not only connecting himself to previous generations and connecting himself to some idea that’s just bigger than his life, but he was connecting us to it as well, that there was a kind of hand-off occurring, so that was unexpected for me.
It was a completion for you, it sounds like.
It was a completion, but more of a hand-off. It was this sense of, how is dying ever at all acceptable? How is it ever anything except this awful, terrible thing? And the only way that it is is because we as human beings live for something bigger than ourselves. It can be family, community, our country, our ideals, justice. Many people live for more. And you know that some things you started will not be finished in your lifetime, and that you’re sometimes finishing things that others started in their lifetime.
What I felt on the Ganges was that sense of he had brought us there and connected himself to all that was important to him, the ways in which he was connected to this chain of generations coming back and that we were connected to the chain of generations coming forward. So it wasn’t just a sense of completion. It was a sense of, you know, we’re all very small, and all we add is our link in the chain.
"Letting go," and why it's so hard to do: Atul Gawande explores the challenges of end-of-life care
"Letting go," and why it's so hard to do: Atul Gawande explores the challenges of end-of-life care
In his article Dr. Gawande explains that expense is the reason that end-of-life medical care has become a topic of discussion. Health costs continue to escalate, especially for patients in their final months of life, which accounts for 25% of Medicare's total spending.1 The cost pattern of treating patients with cancer is higher in the beginning and levels off as treatment is effective. However, if the disease worsens, treatment escalates, and cancer-related expenses create a U-shaped curve.2
THINGS MONEY CAN'T BUY
The discussion of end-of-life care should go far beyond money. As Dr. Gawande writes, “Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop.”
In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted to intensive care as they neared death had a substantially worse quality of life in their last week of life than those who received palliative care and no such interventions. And, 6 months after they died, their caregivers were three times as likely to suffer major depression.3
ARE WE GOING TOO FAR?This was not a concern years ago, when people died quickly because there were no medical interventions. But now there are many things that can be done in the end stages of illness or in very old age; there are IVs, of course, and ventilators, dialysis, surgery, and all sorts of intubation. If one chemotherapy agent fails to work, maybe the next level or an experimental drug would work. When the patient's side effects escalate, the physician prescribes new drugs to counteract them. All of this is done with the best intentions of helping the patient, but does it enhance the patient's quality of life? Does it address the dying patient's concerns? Does the patient even know that he or she is dying? Has anyone broached the subject?
Dr. Gawande believes there should be more instruction for medical staff to talk to patients, to help them in the art of dying. “We train and retrain for surgical skills. We probably need to do so for these discussions with terminally ill patients, as well—especially given the stakes.”
PALLIATIVE CARE SPECIALIST, SUSAN D. BLOCK Dr. Gawande consulted Susan D. Block, MD, a nationally recognized palliative care specialist at Peter Bent Brigham who trains medical staff in the art of end-of-life discussions. She said, “A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances. There are many worries and real terrors.”4
Dr. Block explained that it is important to sit down with the patient, try to ascertain what is most important to the patient at this time, and then help the patient achieve it. This should not be a discussion about medical or surgical treatment. She cautioned that at least half of this sit-down should be devoted to listening to the patient.
The actual words the practitioner uses in what Dr. Block calls a breakpoint discussion are important. Palliative care experts advise saying something such as, “I wish things were different,” instead of, “I'm sorry things turned out this way,” which can sound like pity. Instead of asking, “What do you want when you are dying?” the practitioner should ask instead, “If time becomes short, what is most important to you?”
Dr. Gawande wrote that Dr. Block “keeps a list of items that she aims to cover with terminal patients in the time before decisions have to be made: what they understand their prognosis to be; what their concerns are about what lies ahead; whom they want to make decisions when they can't; how they want to spend their time as options become limited; what kinds of trade-offs they are willing to make.”
MEETING THE NEEDS OF THE TERMINALLY ILLPatients who are terminally ill are concerned with more than simply surviving. When surveyed, they cited concerns such as not suffering, spending time with family, feeling the caring touch of someone else, being cognitively aware, and not being burdensome to others.5 However, according to Dr. Gawande:
Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system's expense. It is how we can build a health care system that will actually help dying patients achieve what's most important to them at the end of their lives.
We need to become more effective in using the techniques that experts already have for walking people through these moments in their lives. The failure of our system is that we are not good at helping people sort out what is most important to them when they are dying and then helping them achieve it.
The complete article is available in The New Yorker: August 2, 2010, and online. ONA
1. Riley GF, Lubitz JD. Long-term trends in Medicare payments in the last year of life. Health Serv Res. 2010;45(2):565-576.
2. Yabroff KR, Warren JL, Brown ML. Costs of cancer care in the USA: a descriptive review. Nat Clin Pract Oncol. 2007;4(11):643-656.
3. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673.
4. Weissman DE, Quill TE, Block SD. Missed opportunities in medical student education. J Palliat Med. 2010;13(5):489-490.
5. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 200015;284(19):2476-2482.
Bette Kaplan is a medical writer in Tenafly, New Jersey.