Interview David Muller, M.D.
Dean of medical education at the Mount Sinai School of Medicine, he is also a physician and co-founder of the Mount Sinai Visiting Doctors Program, the country's largest academic physician home-visiting program. This is the edited transcript of interviews conducted on April 1 and June 14, 2010.
How do most people die in America, and where?
... Most people die in some kind of an institution -- be it a hospital or a nursing home or the intensive care unit in a hospital -- and not at home, which continues to be the perception of where people feel like they want to die -- at home, surrounded by family in familiar surroundings, not somewhere where there are lots of strangers and there's lots of technology and people are poking and prodding them. And that continues to be the case. I don't know that it really has changed at all the last 10 or 15 years, despite what are probably valiant efforts on the parts of the hospice movement and the palliative care movement. Still, people die where they don't want to die, which is hospitals and nursing homes.
Why? What's happening?
... Toward the end of someone's life, in most instances people have relied on doctors and medications and science and technology to see them through all of the things that have happened, and then when the time comes to make one of those pivotal decisions -- is this toward the end, or sort of the end, or is this actually the end, or do I continue to rely on everything that's kept me going so far? -- I think a lot of people are very unsure and decide one more time to rely on medicine and doctors and see what could happen, which is probably a very normal and natural thing to do.
I think there are probably other reasons, too -- the fact that most of medicine is driven by technological innovation, by scientific discovery. And then there's the financial aspect of it also, that doctors, hospitals make money because people get sick and come to doctors and hospitals. So it's a little bit counterintuitive, just based on the way health care is financed in this country, to let people go home and opt out of a system that generates revenue for its own existence.
Medicine is always pushing the envelope, so there are new kinds of death.
Right. I think that there's an added nuance to that, a small one, in that I think a lot of students who come to medical school don't really have that mind-set necessarily to cure and to pursue advances in science and technology and medicine and discover. Some of them do, but a lot of them just want to come and take care of people and make the world a better place.
But what does happen, clearly, as you described, is that over the course of time, during medical school and then during clinical training, there is an indoctrination that takes place, because most of what they're exposed to in medicine continues to be procedures and devices and science and discoveries and pharmaceuticals. So almost regardless of what the mind-set of the student was when they came to school, it shifts over the course of time toward what you described, which is, how do we cure this; how do we make it better?
And unfortunately, what we lose is some of that holistic perspective of what does the patient really want, what's best for the family in this situation, so that the difficulty at the end of that process is that one becomes really focused on an outcome that isn't always attainable or isn't always in the best interest of the patient. It's an outcome that might make the most sense clinically in terms of what it says in the textbook or in terms of what we teach in the classroom, but it doesn't always meet the patient's expectations. And that, I think, is where the big disconnect starts to happen. ...
What can modern medicine do now that complicates these issues for patients, families and doctors?
I think that what modern medicine can do now that we weren't able to do a generation or more ago is to prolong life. There are rare instances where we can actually cure a disease -- outright cure it -- and the patient is healthy thereafter. But most of what we do is prolong life. And we try to do that within the framework of maintaining a quality of life for the patient and family, but that isn't always the case. And I would say frankly, that as the population ages and as patients individually get older, it's less and less possible. So it becomes actually easier to prolong someone's life and much, much harder to maintain any semblance of quality to that life. ...
Even though you've been able to put off their heart attack for another 10 or 20 years or delay their demise from cancer by another six months or a year, in the end they're going to have the heart attack, or they're going to develop Alzheimer's, or they're going to succumb to their cancer. And you have to be prepared for that. You can't pretend that you're only there to be the doctor for the middle part of it.
And because the prolongation part is easier, I think it becomes the path of least resistance for a lot of modern medicine and for a lot of individual doctors. What we end up doing is losing sight of the underpinnings of why we're prolonging the life, so that the person has a better life, so they can enjoy themselves during the course of that life, which frankly, for the most part, we don't do anymore.
Because we can do so much, what are the complications in end-of-life decisions?
Because we can do so much, the kinds of complications that come up are making decisions about end of life that have less to do with the actual illness the person is suffering from and more the complications that have happened over time. It tends to be more that patients and families have to confront a medical catastrophe, maybe a complication of a procedure or side effect of a drug, or something that's really peripheral to the core illness that the patient is suffering from. And that becomes, I think, a very confusing decision or a very difficult algorithm to follow, compared to 50 or 100 years ago, where someone had a particular disease entity or an illness, and they sort of knew what would happen. Maybe it was cancer; maybe it was heart disease; maybe it was some form of dementia. But you could sort of plot out over the course of time what you could expect to happen.
What's different today is that because there's so much innovation and because of how rapidly it evolves, it almost becomes impossible to predict it, because there's almost always something else that we can do to put off the inevitable -- another course of chemotherapy, a little bit more radiation. What if we got one more CAT scan? What if we explored this person's belly one more time? There's always a nagging concern in the back of your mind, have I really left no stone unturned?
So families and patients are facing new kinds of life-or-death decisions.
... What's different today is that you don't know when that end is coming because you're not sure how much longer you can prolong things. So the difficulty is in how much time am I willing to sacrifice on earth in order to have some sort of dignified, peaceful, asymptomatic death?
Most patients who have a chronic illness -- and we could pick any chronic illness: They might have emphysema; they might have diabetes -- the very nature of every chronic illness is that it has exacerbations, acute exacerbations. So if you have emphysema, you're going to get bronchitis and pneumonia every once in a while. It's almost inevitable. If you have chronic heart disease, you're going to get episodes of chest pain or small heart attacks. For every one of those episodes now, as you near the end of life, you're faced with this impossible decision, which is, is it OK for me to die of this bronchitis or pneumonia, or do I really need to try another course of antibiotics? Is it OK for me to have this chest pain, heart attack and then maybe die from that, or do I have to go to the hospital and end up in the CCU [coronary care unit] and get more aggressive treatment for my heart? And it's a decision that's just impossible to make.
There's no way to make any sense of it unless you choose, almost arbitrarily, one path or another. I'm going to blindly pursue what the doctors and medicine have told me all along and get more care and seek more treatment and end up probably dying in the hospital. Or I'm going to say, regardless of whether they can prolong my life for another month or six months or a year, I'm going to choose to just end things here, because it's OK, because it's been enough, and I've suffered quite a bit from my chronic illness, and I don't want to go any further even though there are things that are being offered to me.
We're seeing patients with very small potential of cure, but the desire to live seems to trump everything.
I disagree with that. I think that the idea that end of life or dignity with death is not the mind-set of lots of people in the hospital because they opt to do more and more things or accept more medical care is actually not true. I think that it's very much on the mind of every single patient and every single family member. But when you're in a structured setting like a hospital or a nursing home, the default option is to do something and do more. That's where I think the disconnect is.
I think if someone spent some quality time -- and this is what palliative care doctors do in the palliative care teams. They sit down with patients and their families, and they have a very meaningful discussion about what's going on. And one of the terms they use is "goals of care." What are the real goals of care here? I think that more often than not, when you begin to scrape away the superficial layers of what the patient has gotten used to saying -- because they're in this structured, you might even say rigid, setting of the hospital or nursing home -- you realize that what's really on their mind is how they're going to die and when they're going to die and what it's going to feel like and how they can best control it, and can it happen in a dignified way, without pain, without distress, maybe even at home.
We are seeing something very different: an incredible desire to live, fear of death, up against mortality. Patients are clinging to life. How does that happen?
I completely understand the question, and I can't pretend to have an answer for it. If I had an answer for it, the world would be a completely different place right now.
I feel fundamentally that at least part of it has to do with the idea of a good death. Like a lot of things in American culture, [it] has become one more notch in your belt. I need to have a great house; I need to have a fancy car; I need to have something else that I can acquire, accumulate, almost as if it's a possession.
And this isn't the whole answer. But I think part of it is that people don't often come to the realization that there's a cost to that good death. ... It comes at a very, very high price because of the way medicine is structured now, because of the science and the technology and how far we can push people. It means that you have to give up on something. It's not always the case. Some people live to the ripe old age of 102, and they die in their sleep, and it's a great death, and they had a chance to talk to their great-grandchildren beforehand, and everything is wonderful.
But for people who become part of the medical system, in order to do it, you very, very frequently have to pay a price for that. And I think that that's something that isn't really discussed very much. It means that you can't have the security of the hospital, you can't be as connected to your doctors as you have been, and you probably have to give up on what would have been some time on this earth in order to have that good, dignified death.
Within the confines of the hospital, it's very, very difficult if not impossible to make sense of those trade-offs. I think it's just a function of the way hospitals are structured.
So if you're a patient in a hospital, and you have some life-limiting or life-threatening illness, there's so many voices you have to listen to. It's very different than if you're in [another] setting. If you're at home, you're basically just at home. If you're in a hospital, your family is there; your friends and neighbors, clergy might come to visit; there's a nurse who's there every day, and sometimes the nurse changes; there are aides who come and do things; there are doctors; and there are consultants. The number of different perspectives on what's going on with you and the number of different opinions if you were to begin to solicit those opinions -- because probably as a patient you want to know what people think, you want as much information as possible -- it's completely overwhelming. And it's never going to be something that is unified, or where just about everyone is aligned in terms of the way they're thinking about you and your care and what's best for you.
And then of course there's you and how you're hard-wired and what you think about life and death and illness and suffering, and how much of it you're willing to accept or not, or how many family milestones are coming up. I think within the confines of the hospital, it's very, very difficult to make those kinds of big, dramatic decisions.
What can we do now to sustain a life, and what decisions do patients face because of what we can do?
To take it to an extreme, what modern medicine is capable of doing is almost what 20 years ago was considered science fiction. It's almost suspended animation. It isn't quite, because it's not indefinite, but it begins to feel like it's indefinite, certainly to the patients and families who are experiencing it, because essentially you can support pretty much every body system for years -- sometimes, in the case of certain patients, literally for years -- because you can keep their lungs breathing and keep their heart beating, keep their blood pressure up and keep their blood flowing and prevent infection, or cure it and treat it if it does come up. So it takes something really of colossal proportions to end a life that's being supported in that way. That suspended-animation state goes on forever.
And still it's life. It's considered life by most people, whether it's a religious perspective or not. But the person certainly is still alive. You can still go visit them in the hospital. So it feels like we're still providing care, but in reality we're sustaining death, I think. ... So the decisions at the end of life have become much more complicated for everyone involved.
What decisions come in the wake of that? What happens?
So in the wake of that kind of suspended animation, the decisions become undoing what you've already done. It's very, very different -- to use a classic sort of prototypical but simple example -- for the family to make a decision for a patient who can no longer swallow. They have dementia, and it's gotten to the point where they can't swallow safely; or they've had a devastating stroke, and they can no longer swallow safely. In a situation where the family knows that that patient, their loved one, didn't want any kind of artificial medical support -- and lots of people make that decision -- they're confronted in that moment in time with the decision as to whether to put a feeding tube in and artificially give them nutrition or not to do it. It's a very, very hard thing to do, even if that person has told you 100 times, "No matter what, don't let them put a feeding tube in me." And many families succumb to the family pressure but also the doctors' pressure to put that feeding tube in.
But the case that I'd like to make is that it's actually easier, if framed in the right way, to not put the feeding tube in and help someone die a reasonable and dignified death than to put the feeding tube in, and a couple of years later, after a series of horrific complications, then decide to take the feeding tube out or stop using it. That feels a lot more, to families, like ending a life than allowing a life to end. I think that's a critical distinction to make.
The same is true with a breathing tube. The same is true with a surgery or another round of chemotherapy. It's much easier to say, "I don't want to have that," or "She wouldn't have wanted to have that," than to begin the process and then try to undo it.
But most people don't say no. So then what happens?
So then the emotional burden of feeling like you have to actively end a life -- and we talk about this a lot in medical school with students, because the distinction between passively and actively doing something that leads to someone's death is a very interesting distinction. There's a lot of controversy over it. But for the nonmedical person, for the family member, it feels like you're killing someone, and it's not. And I don't believe that that's really the case, but I think that for most laypeople, when they have to make a decision to take someone off of a ventilator, tell the doctor to stop doing that, tell the doctor to turn off the drip, the medication that's sustaining the blood pressure, you have to agree that at some point it starts to feel like you're the one who's deciding when this life should end, as opposed to the disease process ending that person's life. And that, I think, is entirely an unfair burden to place on families.
How hard is it for doctors to let somebody die? ... You're always on this edge of extending life and potentially prolonging death.
Yeah, I think that's a good point. From the perspective of a physician, given how much is available these days, given how many options there are, whether it's medications or procedures, it becomes very, very difficult to walk a patient and a family through those paces, for a couple of different reasons, one of which is simply that the information is very, very complicated. And it's probably a lot to expect of someone who's already kind of distressed and vulnerable and afraid to process the amount of information they really need to in order to make a truly informed decision. So the doctor's ability to communicate, even to make eye contact, but really to be a good communicator and be empathetic and understand what the patient is going through and try to convey that information is much, much harder than it used to be, when there were just frankly fewer options available.
The other problem is that it becomes almost impossible for the doctor to separate themselves from the description of the information or the decision that the patient is ultimately going to make. And that has to do with a variety of things: their own cultural ethnic background, their religious beliefs, what they were taught in medical school and the way they were taught, what happened to the last two or three patients that they offered this kind of chemotherapy to. All of that starts to accumulate in someone's mind, so that the way in which they present the information to the patient is invariably skewed in one way or another, not skewed to manipulate the patient or to come to a particular decision, but skewed because we're just all human beings, and there's no way to be completely objective about the way that you present that sort of data.
I think in the end it's OK, because patients and doctors tend to find each other. You tend to find someone who you feel is a good match for you, and so whatever baggage they're bringing into the decision, whether it's the patient's baggage or the doctor's baggage, you're kind of OK working around that. But in terms of the perspective of the doctor and trying to convey it in a clear and concise and transparent way, it's much harder to do it than it's ever been.
I'm not so sure, at this point in time, if what we have always said has been the fundamental drive of medicine, which is to cure and prolong life, is really exactly as profound as it used to be. I think that over the course of the last 20 years, because of things like the palliative care movement and the hospice movement, more and more doctors have made it part of the culture of medicine to accept the fact that their patients are going to die and that there is such a thing as good symptom control or symptom relief. Yes, there are still doctors out there who are absolutely driven to cure and find any option available to try to manage an illness, but I think the culture of medicine is changing.
I think what's changing more slowly is the culture of patients, because what we've done in medicine over the course of at least the last 50 years is to create this culture of expectation. By offering more and more, and being more and more aggressive, we've created expectations in patients and families and in society, at least in American society, that when you come, you're coming to get something more.
So it's really in this country, maybe alone in the world, that we allow our doctors to continue to practice in that way, and we allow our patients to continue to have that expectation. … There's no question that the technology … has saved, in a meaningful way, hundreds of thousands of lives, … but with those advances and with all of that progress comes an ultimate trade-off. … The toll is sometimes devastating on the patient themselves, on their family and their loved ones, and on the health care system. …
I would make the case that the culture of medicine as a profession has already begun to shift in the other direction, the more holistic direction, but the culture of the patients and society is still that expectation. Of course they're going to confront a spectrum of doctors, from the most end-of-life, palliative care-oriented to the people who are going to give someone chemotherapy until literally their last day on earth. But there's still a big disconnect there. ...
When do you say no? How do you say no if the patient doesn't want you to say no? Doctors face those complications day after day.
You're absolutely right. I wouldn't call them complications. You might call them just uncertainty. And the uncertainty is inherent in medicine. I don't want to sound over and over again like I have explanations for things or answers for them, but there's nothing that we do in medicine that isn't racked with uncertainty, nothing. Even reading the classic EKG of the patient who's coming in with the big heart attack, even reading the CAT scan and seeing the tumor there, there's always some element of uncertainty. ... That uncertainty is something that you have to live with all the time. But it's not the path of least resistance. The path of least resistance is to pretend to be certain or to rely on certainty when, deep down, you know that it's really not there. ...
Uncertainty in medicine is greater now than ever before. Explain.
I think the hardest things for doctors today, in the context of what we've been discussing -- end-of-life decisions, goals of care, the family's expectations, the patient's expectations -- is the uncertainty of whether they're making the right decision. It's never easy to talk to a patient about death and dying, or to their family. It's much harder when you know that there's almost always something more out there that can be done: another course of chemotherapy, a little bit more radiation.
So when you have those tools at your beck and call, and some data sometimes and sometimes no data at all except for a patient who's hoping for sometimes more, or a family, it makes it harder to have that conversation, but it also is a nagging concern in the back of your mind. Have I really left no stone unturned? Have I really thought of every conceivable thing I could do? Have I asked every expert consultant in my group of peers whether there's anything else that I can do? It makes it very hard, not only intellectually but emotionally, to then have a conversation with a patient that sounds mostly like, "Let's talk about death and the end of life," because you know that there are more things out there, and yet at the same time they are not things that are going to provide a true extension of life in the way that the patient would like to lead their life.
And more complicated when many treatments themselves bring a patient to the brink of death? How much harder does that make it to know when it is the end?
That's an interesting question. I mean, the concept of a particular treatment being so aggressive or so harsh that it might bring someone to the brink of death, I think is not as much of a factor, only because when you think about the other variable we talked about before, which is, "Is the patient at a stage of their life when they can no longer benefit from things like this?" is, I think in my mind, much more important than how aggressive or dangerous the therapy is.
So that if you take someone who's 20 and has acute leukemia and is going to die, and you've got to look at them in the face and say, "Look, I've got a therapy, but it's very, very dangerous, and the percent of people who die from it is a high percent, 10 to 20 percent, which is very, very high," I think that's an easier discussion for doctors to have, and for many patients, an easier decision to make, because they've got a shot and they've got a long life ahead of them, and in a sense, the potential benefit is worth the risk.
If you have someone who's 70 or 80 or 90 -- and it's not just age that has to do with it; it's everything that we talked about that comes with it: chronic illness, frailty, dependence in a lot of different ways -- and that person has leukemia, maybe not acute leukemia, maybe it's chronic, and they need to have an intervention that's very, very aggressive and might bring them to the brink of death, it's a different kind of discussion to have. But I don't think that it's about the therapy and how dangerous it is. I think it's about the context in which you have that discussion.
Knowing when enough is enough. You really don't know. The patient could be the tail end of the curve and could come back. Those complications are much more difficult.
Yes, absolutely. The uncertainty today is exactly because you don't know. You know intellectually. You've read the papers, and you know in general how patients do, and you can typically break them down into categories, and you have that sense. But it's never certain, ever. It's like the patient who comes to your office with chest pain. You could send everyone with chest pain to the emergency room if you're a doctor, but it makes you a lousy doctor because half of them will have heartburn and another quarter of them will have some[thing] muscular, pulled something in their chest wall, and only a tiny percentage of those patients really need to have immediate attention and maybe an intervention. But the reality is, in a doctor's practice, sometimes they'll send someone home with chest pain who's really having angina, and you can't be entirely certain. And sometimes they'll send someone to the emergency room who just has some heartburn.
So all of medicine carries with it that uncertainty. I think that the tension around it gets ratcheted up when it's end-of-life care, or serious acute illness care on top of chronic illness, and the outcome may be death -- even if it's not a "dying" patient, but someone who could die, either from their illness or from the therapy. And you never ever really know. You know kind of what the odds are, you know what the relative risk is compared to other patients, but you really have no idea. ...
Doctors grapple with the danger of prolonging death or stopping too soon. Lay out the different perspectives on the doctor’s role.
It's an incredible dilemma that you have uncovered. Look, fundamentally, the doctor's role is to do what the patient asks them to do. ... There are patients who want prolonged treatment until the very, very end, because that's what they and/or their families believe is the right thing to do for whatever reasons they believe it. And in situations like that, that's what you try to do for your patient. And there are patients who want to opt out sometimes even too soon, and it feels a little bit uncomfortable, and depending on the circumstances, if you're the doctor, that's really what your duty is. You're duty-bound to do that because that's what your patient wants.
If that's the foundation, then at the fringes of that, the doctor's role becomes a little bit murky. So if your patient is demanding treatment that you as the physician know is absolutely futile and will cause nothing but suffering and heartache and disaster, there are ways, as a physician, to opt out. Certainly it requires a series of conversations with patients and trying to educate them and help them gain some perspective on what they're choosing. But when push comes to shove, as a doctor, you can opt out. You can say: "You know what? In circumstances like this, I'm not comfortable doing surgery, giving chemotherapy, doing a tracheostomy, and I'll find you a colleague of mine who might be, but I'm not willing to provide that kind of care."
The same is true at the other end of the spectrum. Lots of patients opt out a little bit early. It's OK for them that things are going to end. ... But the hardest decisions are the ones that are in the middle part of that bell-shaped curve, not on the fringes. The fringes are just sort of the big, dramatic situations. The hard stuff is when the patient, along a very broad spectrum all the way to adamantly, does want some kind of treatment and how you as the physician confront that.
How do you figure out a patient's wishes when they often don't necessarily know what they are, especially when you know the likely outcome and the patient doesn't? Doctors know more, and yet patients drive the treatment decisions.
... You care about your patients a great deal. You love them a lot of the time. You think that you can see their decisions marching out toward disaster or their refusal of certain treatments marching out toward disaster, and you're tempted very often to say or do something about it. ... But in the end, you can't control the process. In the end, the patient has to live or die, and the patient's family has to experience that life and death in a way that will give them peace of mind in perpetuity, not constantly second-guessing.
So part of this requires, on the part of the physician, that you just take a step back, and after you've given them all the information and they've asked you for your opinion, and you've tried to sort through your own baggage and the objective clinical information, to let them make the decision that they think is best, and then deal with whatever the consequences are. Maybe the most important role you play is that you don't walk away from the consequences. ...
Sum up the complications and difficulties that physicians face in their conversations with patient and family.
... There's an element in there of setting a threshold for yourself. And I think that it's certainly true for physicians; I think it's probably true for most patients and families, if they come to understand the scope of what's going on. So I think those thresholds are maybe where part of the answer is to this big dilemma.
The thresholds are different for different doctors, even different doctors of the same specialty. Everyone sets a threshold at a different place, and on top of that, the thresholds change over time. Your threshold can go up or down for a whole variety of reasons. So if I said to the patient, "There's probably a 5 percent chance of this working," that may be enough of a threshold for them, when [in] reality, in my mind, a threshold is maybe 30 percent. If the patient has got a 30 percent or better chance of surviving this treatment, I think it's worth doing it. Anything less than 30 percent, based on what I've seen, is a colossal waste of time.
There's no way to interpret that number. The patient has not been in my head for the last 15 years as I've been giving chemotherapy or bone marrow transplants or lifesaving transplant surgery. They haven't been in my head, experiencing that over the course of time. They get one glimpse at it, or maybe, in rare cases, they get to make that decision twice. They get a transplanted kidney, and then they have to go back again five years later. Those thresholds are impossible to interpret.
So right now my threshold is at 30 percent, but based on the next five patients that I see, my threshold could go down to 10 percent, because they were heart-wrenching cases of people I really identified with, or it could go up to 50 percent because I've seen nothing but disasters. And then I start to say to my patients, "You know, the chances are 50-50 that you're going to survive this treatment." And that comes out sounding like a completely different type of consent or a completely different kind of information than "You've got a 50 percent chance of surviving with this chemotherapy."
I think that's where a lot of the struggle is. And what has been described in the film over the course of time that we've talked about it is this sense that it's a moving target for the patients. You don't know if you're going to walk in the room and say "1 percent," that the family and patient will cling to that, or you say, "Maybe 50 to 60 percent," and they'll say: "Oh, my God, I don't want that. Send me home. I'd rather be home and die and be comfortable. Fifty-50 odds? That's terrible." ...
Some want everything to be done, and at the end they change their mind. Others want DNR ["Do Not Resuscitate"], but later they or family end up wanting everything. So the conversation is complicated; it's not just at the beginning.
The conversations like that about end-of-life decisions never take place in a point in time. They do take place technically in a point in time, but really they don't, because it's part of the continuum of care. And on a day-to-day if not hour-to-hour basis, sometimes those decisions change. People have second thoughts. Patients come to terms with [something] or develop a lot of anxiety about something and want to have another discussion. Or families change their minds, or there's conflict within the family. And so it is. The sand is constantly shifting.
But as the doctor, I think you still have to feel comfortable advocating for a certain general approach to things. The reason that it works is that, as we said before, the patients and doctors find each other. You connect with a doctor because you like the way that they think, and you've heard that their general approach is maybe very, very aggressive, and they don't talk a lot about death, and that isn't on the table, and that's not what you want to hear as a patient; or that they're different, and they're more holistic, and they're more interested in your symptom management and aren't as aggressive. And when those matches are made well -- between the patient and the doctor, and including the family -- then I think things tend to go better. ...
To tell someone that they're dying can be either very, very hard, the hardest thing you ever did in your entire life, or very, very easy. It depends not only on how you frame the discussion in the moment, but how you've led up to it over the course of time.
I've personally had experiences where I saw a new patient who was clearly dying of cancer, who hadn't been told by anyone, ever, that she was dying of cancer, and it was happening for months. Her treatment was futile. And I had to sit there and tell her that she was dying of cancer, and it was the worst thing I ever had to do in my entire life. It was horrible. And she did what people predictably would do, is she broke down crying. But because of the circumstances, she had to know.
But if I'd known that patient all along, and we talked about the possibility of death from cancer even as we were starting treatment, so that I had a sense her perspective on it was a comprehensive one and a healthy one, and over the course of time we'd continue to have those discussions, that when the time came, and I said, "You know, I think you're dying from the cancer now," the delivery and the way that it would be received is entirely different. It might be a relief. It might be a wonderful conversation to have, because now we could say: "OK, what do I do? Do I take the cruise to Bermuda and then come back and celebrate my 75th birthday and bring my family around and prepare to die from this thing?" So I think telling someone they're dying -- the question doesn't really cover all of the different possibilities of how it shakes out.
There's a range of perspectives. Some doctors say: "Who am I to say that? I'm just his doctor." Some feel an obligation so the patient isn't blindsided and can prepare. Other traditions say it's a sin to tell someone, taking away their hope. ...
It's complicated. I can tell you what my opinion is, but I can't tell you what the right answer is. In my opinion, everyone who's faced with a life-threatening illness thinks about death. Everyone does. They don't necessarily think about it all the time, they don't necessarily obsess about it, but at some point or another, it intrudes into their consciousness. Maybe they try to push it away, but it's this lingering doubt.
It's this horrible question that hangs over everything: Am I going to die? When am I going to die? How am I going to die? Is this disease going to make me die? Is this treatment going to make me die? To have something like that elephant in the room exist, and as a physician not confront it, when you know it's sometimes the most distressing and awkward thing in your patient's life, is completely unacceptable. It's just not acceptable. And if you care for your patient in a holistic manner, you care about all of them, not just about their physical well-being but about their emotional well-being and their family relationships and their spirituality, all of those things, then you're responsible for confronting them.
Now, you can confront it in any way that you want. You can say something like: "You know, a lot of people in this situation think a lot about death. I'm unbelievably uncomfortable talking about it, but I can refer you to someone who can help. Maybe that's a social worker or a psychiatrist, psychologist; maybe it's a palliative care doctor. But it can't be me. I'm just really uncomfortable with it, and I want to put that on the table." And that will help us have a better relationship, going forward.
Or it might be: "A lot of people in your situation think a lot about death. It's normal, and it's natural, and I am totally comfortable with it. And if at any time you want to talk about it with me, I'm happy to do that, including when it might happen or how it might happen, or even the idea that at some point you may feel like you want to get help in dying. I'm OK with having all of those conversations" -- which doesn't really commit me to doing anything actively about it, but it relieves my patient of this unbelievable burden that's been hanging over their head. ...
Because we can do so much, there's another layer of complexity to end-of-life conversations for a doctor. ... In certain treatments, they can be so near death and come back that it's difficult to know if this is the time they're dying. The lines for the physician can be hard. They only know in retrospect whether they can rebound.
Right. So in retrospect, you only know because you look back and say, "I guess they bounced back one more time," or "I guess this was the last time, and they passed away." I guess the really hard question is, in the moment, when they're teetering on the brink and you can't really tell, what do you do? Do you push ahead as aggressively as possible? Do you back off and say: "OK, slow down. This looks like it might be the last time"? Those are very, very hard decisions to make. I would think, I would hope, that most of the time physicians are making that kind of a decision based either on what they know the patient has always wanted, their expressed wishes over the course of time, the way they lived their life, or what the family input is about what to do: "Press on. Be aggressive. We know that this is what he would have wanted"; or, "You know, we don't think he would have wanted this, and it's already too much, and everyone's been through hell, and it's time to back off." Then the doctor takes his cue, her cue, from that.
In an American hospital, unless somebody says stop, the default position is to do everything?
It's generally the culture in hospitals [that] the default is generally to do, but it does vary quite a bit. And I don't mean just vary on an individual basis, because it does as well. Different doctors with different perspectives will tend to do a little bit more or less aggressively, based on the kind of medicine they practice. But it also varies a little bit state to state. Some states are very, very rigid about the extent to which you have to do, as the default position, and some states are more flexible in terms of how much leeway, as the doctor, you have to say: "You know what? The default is to do, but in a situation like this, it really is not going to provide any benefit, and so we're going to choose not to do."
So there is that underpinning, a sort of cultural underpinning of doing more. And it's driven by a lot of things. It's driven by the science; it's driven by money. There are all sorts of factors. But there's a fair amount of variation.
By the time patients come to the ICU, they're often already intubated or on a ventilator, and family members must decide to continue or withdraw treatment.
So the decision making in terms of critical illness or life-threatening illness is complicated. ... Sometimes the patient decides themselves; sometimes they call the doctor in the middle of the night, and the doctor says, "You'd better get to the hospital"; and sometimes a family member decides and calls 911, and all of a sudden they're in the ambulance. And once you are part of that system, it's very, very hard to stop the cascade, because everyone's default decision -- the EMS guys in 911, the emergency room technicians, the ER docs, the people who are admitting onto the floor -- their default is to do, because I guess, in theory, if you didn't want them to do, you wouldn't have called 911 to begin with, which is really not the case usually. Once that process happens, the momentum is very, very hard to stop.
If you are a patient who's awake and alert and in control of your faculties, and if you're lucky enough to have a doctor you know in the ER or in the hospital, there's a reasonable amount of hope that you can control the process, you can pace things in a reasonable way. Or if you have a family member, a friend who is a very strong advocate and is there all the time and is trying to help manage the decision making, you can control the pace. If not, it very easily and quickly escalates out of control. And that's all assuming that the patient is getting sicker. ...
But if they come in with a fever and pneumonia, and then their blood pressure drops, and then all of a sudden their white count shoots up, and then there's some bleeding, the default is always going to be, "Got to fix it, got to fix it, because the patient is going to die if we don't." It's very, very hard to stop that process. Even if you're awake and alert and an educated consumer, even if your family is at your bedside, the compelling reason to do is almost always greater than the compelling reason not to do -- even if you're someone who is dying from an underlying illness that has nothing to do with your hospitalization. So that by the time you get into the ICU, there have been so many accumulated decisions already made that undoing something critical in the ICU means undoing all of those decisions, which clinically is pretty straightforward, but for the person who has lived through every one of those decisions, the family member who was confronted by the "Should we call 911 tonight or not? I don't know what to do," to the emergency room experience to the confrontations on the floors with the doctors to the everything, for them, that ICU decision is undoing 50 decisions that they acquiesced to all along the way. And that is not an easy thing to do.
If you've got a really good doctor on your hands, they spend a lot of time sitting down and talking about goals of care: What are the outcomes we're looking for? What do we hope to achieve? How much time do we want to give this? How much suffering is really going on while we do all of these medical things? But even in a situation like that, it's an enormous challenge for families.
Doctors can't stop death, but they have a hand in when someone dies, and maybe the kind of death. If you guide a family to withdrawing treatment or not going for the transplant, it will lead to a different kind of death. Is that the sacrifice you were talking about earlier?
Yes. And I think it's a good point, because part of the decision making in medicine today really revolves around the kind of death and the extent to which you as the physician can control or manage or engineer that. ...
I think part of what most doctors want for themselves and for their patients, and I think actually what most patients want for themselves, is some semblance of control; that they can be the deciding factor in what goes on, that they can choose the pace at which things will happen. And that doesn't necessarily define what they're going to do. ...
I think that the doctor decisions about how to help patients and families manage that death revolve a lot around that very primitive need to be able to not only have some control for ourselves but to provide that to patients, to not let them feel like things have escalated out of control and there's nothing more that we can do about it other than follow the momentum of the process. ...
The things that we discover in medicine, those innovations, all happen in sort of a stepwise, systematic fashion, so one thing doesn't invariably lead to another. All of those things are lined up as dominoes, and we -- you and I, the patient, the doctor -- can choose how many of those dominoes we want to knock down and when we want to stop knocking down the dominoes. There isn't that inevitability to it. And I think that that's an important concept to describe as well. ...
That semblance of control is critical for your survival as a physician. Otherwise you feel like you're a cog in the machine and you have no control over any decision you make. You just have to go on to the next automatic stage of whatever comes; the next most aggressive thing is what you have to do. And it's also, in an important way, critical for the patient and the family, because they feel like they can make decisions to do the right thing for their family member, and it's not inevitable.
In an attempt to avoid causing unnecessary suffering, how does it feel to withdraw treatment and hasten death. Is it a fine line physicians walk more and more?
I don't think that managing death is something that's new. During the course of training, everyone hears stories from a generation or two ago of physicians who either unilaterally made a decision or the family quietly made a decision to turn up a patient's morphine and allow them to die a peaceful and painless death. So that idea of being one of the deciding factors in when and how a patient dies is not necessarily new.
I think what's new is that probably back then, the doctor felt very clearly confronted with a dead end in terms of treatment versus what they could manage, help the patients and family manage, which was a peaceful and painless death. Now the array of choices that the doctor confronts when making that very same decision about managing death is an incredible array of alternatives, and a lot of times it's impossible to distinguish between them. And if it's impossible for the doctor, it's clearly going to be inconceivable that a patient or family member will feel good about their decision -- not make the right decision, because of course there is no right decision. But in the end, will they feel good for the next 20 or 30 years, that they did the right thing for their family member? That's, I think, where the difficulty lies.
So the "managing death" part is, I think, part of what doctors have been doing all along. The problem is that the degree of uncertainty you have to deal with now as the doctor, it's hard to describe how much greater it is than it ever was before, because there's always that nagging question in the back of your mind. There's always another consultant you could find who would say: "Of course we would do this procedure. Of course we can provide that device. Of course we can give this treatment. We do it all the time in my practice." And what you have to be able to do is sort of suspend all of that if what you think is the right thing to do is to talk your patient and the family through what's coming next, which is probably death.
So in terms of the way we've talked about end-of-life care, and how or whether to factor cost into what does it cost the system, what is it costing society, I think that frankly, it's irrelevant. It has nothing to do with the discussion that you have when you as the physician are facing a patient, when you're confronting their family. It shouldn't be something that even crosses your mind. What you should be focused on is what's best for your patient, what they believe is best for them.
Yes, the way that we do it now does end up costing an enormous amount of money. It's very resource-heavy, and it's very technology-driven. But the drive to make that different or better has less to do with what does it ultimately cost society than what is the relationship between the doctor and patient, and how carefully and well has it been built up over the course of how much time and what's the rapport like and how much trust is there and how many discussions have you had with the patient, so that when they make their decisions, they make decisions that are really well informed and not driven by vulnerability or anxiety or fear or the next available drug or technology that's available to treat their illness.
Is it easier to fix on the cost rather than those other, more fundamental issues?
So if we tried to fix it based on cost, if somehow it was mandated that we cut the cost of care at the end of life, we might get the same kinds of outcomes, but for me, the most important outcome is that either the patient or sometimes the family -- most often the family -- have an enduring sense that they've done the best they could possibly do for their loved one, and the doctor walks away feeling like that, too.
So if you come to me and you tell me that now we're going to cut the cost of end-of-life care and you've got $2,000 to spend, and I don't care how you spend it, I might ultimately come to the same decision, which is: "Sorry, we can't do this experimental treatment. We're going to go home and have hospice, and you'll die a dignified death." But everyone feels bad at the end. Everyone feels the frustration of "This was because we couldn't spend the money. If only we had the money to spend, we could have done more and better."
The way I'd like to approach it is to say the cost is irrelevant, and the amount of money you have to spend is unlimited. But what I want to explain to you over the course of time -- months if not years of our relationship -- is a way of making decisions that will best suit your needs. And sometimes that's science- and technology-driven in the right medical circumstances, but a lot of times it's not. It's not what doctors think is the right thing to do, and it's not what patients want for themselves or family members want for their loved ones. So the decision in the end becomes: "You know what? It's OK. I'm not going to go for this extra procedure. I'm not going to have this extra treatment. And I'm home, and I died, and my family feels forever like they did the right thing, not because they were constrained by cost or policy, but because they were allowed to make what they felt was the best decision." ...