0:33 Intro. [Recording date: September 22, 2014.] Russ: Before introducing today's guest, I have sad news to report. D.G. Myers, who I interviewed last summer, has passed away. His interview was part of the reason I scheduled today's guest, Becky Liddicoat Yamarik, a palliative care physician who had some interesting observations in the aftermath of the Myers interview that she shared with me via email. Myers passed away after the interview with Becky was recorded, so you won't hear it mentioned in today's episode. I will link to D.G. Myers's blog, that includes an announcement of his death with charities you can choose to donate to in his memory. Now for today's episode.



[1:07] Before introducing today's guest, I want to mention we've been creating some additional resources for your education and what we hope is your enjoyment online. Amy Willis of Liberty Fund has been posting at EconTalk what we call Extras--ways for you to check your knowledge and find connections between episodes. And I've been adding afterthoughts on episodes now and then at EconTalk or sometimes on EconLog, our sister site, where we have folks blogging. To keep up with these learning opportunities, follow me on Twitter, which is @EconTalker, which is my Twitter name. And please visit econtalk.org and EconLog (www.econlib.org) if you are interested.

1:52 Russ: And now for today's guest: Becky Liddicoat Yamarik. She is a Hospice Palliative Care physician. Becky, welcome to EconTalk. Guest: Thanks very much. My husband and I are huge fans of the podcast and I'm very happy to be here. Russ: I am, too. Now, this episode grew out of the previous episode we did with D.G. Myers, who talked about living with cancer and how to cope with it, and the fact that he's dying of cancer. And that he's very realistic about that experience. And we're going to talk about that episode eventually, but our main topic has grown out of that, which is the economics of the end of life--the personal and political choices that face patients and doctors. And to me these are essentially economic questions--not because they involve money, although they sometimes do, or incentives, which they sometimes do--but because they involve choices: how to get the most out of life, which I view as the essential economic question. So, I want to begin, Becky, by talking about your job generally, which is a job I'd never heard of until recently. And I suspect it's fairly new. Which is a palliative care physician. What is palliative care? Guest: Well, palliative care is a sub-specialty that grew out of the need for improved communication and symptom management for patients at the end of life. So, people who are palliative care specialists typically have done a year of training after their residency training. Mine was in internal medicine. And then I did a year of training in palliative care, and the focus is on treatment of symptoms, of serious or terminal illnesses. So, we focus a lot on how to treat pain, nausea, shortness of breath, depression--lots of symptoms, for patients who have things like cancer, emphysema, heart failure, Lou Gehrig's Disease. And then the other thing we focus on is helping patients decide on their goals of care--on what treatments make sense, on what their prognosis is--and trying to help patients and families live as well as they can for as long as they can. Russ: But it's presumed--of course, we're all terminal; we're all going to die--but these are people whose death are somewhat imminent, or whose disease is taking a course that is irreversible. Is that the case? Guest: It usually is. So, one of the things that happens in palliative care when it's practiced in the hospital is we tend to see patients very late in the course of their disease, when they are close to death; and we feel it were better off if we see patients earlier. But we can see patients who are not terminally ill. So a lot of times in my clinic work I've treated patients who have very chronic, serious back pain; other chronic pain issues; other symptoms. But it typically is patients who are closer to death. In my residency training in palliative care, every patient who is admitted to the hospital, the admitting doctor had to answer the following question: Would you be surprised if this patient died in a year? And if the answer was, 'No, I would not be surprised,' then they got an automatic palliative care consult. So that's somewhat unusual. That was in a pretty progressive training program. So, we were seeing patients fairly upstream. But unfortunately most of the time we tend to see patients very late in the course. Russ: Talk about hospice. Because in my mind a hospice is a little cottage with 4 or 5 beds where people are getting ready to die, and they are being comforted as they are about to go. That's probably from watching the wrong kind of movie. Maybe the right kind. What is hospice care, and what is a hospice? And what forms do they take in the modern world? Guest: Okay. So, hospice is a kind of care. It is not a place. The definition from Medicare is, in order to be eligible for hospice care, a patient needs to have a prognosis of 6 months or less. Now, that doesn't mean that a patient has to die within 6 months; [?] of patients who live longer-- Russ: They don't enforce it. Guest: Uh, they do and they don't. They audit you. If they see that patients clearly don't meet the criteria--and there is criteria for each disease--then you will have to give Medicare money back. Russ: That's not what I meant. But that's okay. I interrupted you. I apologize. I was making a very bad joke, a little bit of dark humor. Guest: Oh, I see: they don't--yes, they don't come in and say, 'Your 6 months is up.'-- Russ: Time to go. Guest: Yep, time to go. They do not enforce it. But, so, hospice is--in order to accept hospice you have to accept that you have a terminal illness; you need to accept that the focus is on the treatment of symptoms and not on the cure of the disease. And hospice can happen in a home; it can happen in a nursing home. There are some independent sort-of hospice units. But those have sort of fallen by the wayside, I think mostly because of cost and reimbursement issues. So most hospice--if a patient can't be at home they tend to be in a nursing home setting. And in hospice, the minimum you get is you get a nursing visit once a week, if nothing is going on and you are fairly symptom-wise fairly stable. But if a lot is going on a nurse can visit more often. You can have a home health aid that can come typically a couple days a week: that can be more often to help you with bathing. A social worker and chaplain also is required; also a volunteer is required. Through the benefit you can accept a volunteer--and in our hospice that I work for, you may have volunteers that will come 3, 4 hours once a week to help keep you company or take you shopping or do shopping for the caregiver. If not, a 24-hour care service. And a lot of patients and families don't always understand that. The family or a hired care giver needs to be the person there. And for us, my hospice, the vast majority of patients are cared for at home. There are some patients, maybe 20, 30% that are in nursing homes. And if you have a situation where a patient gets really out-of-control pain or shortness of breath, there are mechanisms for us to increase the level of care, for us to send a nurse out for 24 hours for a short period of time to try to get that symptom under control; and that's something called crisis care. Russ: How long has this specialty existed? Do you know? Guest: Well, I finished residency in 2003. And did a little stint doing research, which didn't go that well. And I heard about palliative care in 2005. And my Fellowship, which was at the West L.A. VA, was the second year that they had had Fellows. So, that's about 10 years old, I think. Thereabout.

9:31 Russ: And what happened before? Guest: Good question. I've often wondered why palliative care about now. Is it something that was really needed? I think a lot of people have this romantic view of the past that somehow before, doctors were really great communicators and we've sort of lost that ability, and so we need palliative care to kind of bring that back. I think that before, there weren't as many choices. I think one of the problems is, in modern medicine, there's a lot of very complicated choices to be made: because we have choices. And choices are a good thing, right? I do want to give an example--since you asked me about that--of a way that I think about how things used to be--is, and something that still exists now, is the way that patients are treated with Lou Gehrig's Disease, or ALS (Amyotrophic Lateral Sclerosis). And that is a fairly uncommon disease where you become very weak, and it's progressive, and you lose the ability to walk; you love the ability to talk. Eventually you lose the ability to swallow and to breathe. And these patients, of all the patients I've treated, as a group--I mean, there's individual variation--but as a group they tend to be the most prepared for the decisions at the end of life. And I've often wondered why that is: why is it that they are better prepared? To me, I think the answer is that there is a certainty to this disease. There is like one drug that can sort of slow it down for a while, but that eventually everyone will have to make the decision: do you want a feeding tube? And when you can't breathe any more, do you want a tracheostomy, a hole in your neck, and be hooked up to a ventilator and breathe that way so that you can live longer? And when I've gotten involved with patients with ALS, which is typically when they are hospitalized for pneumonia--sometimes earlier on when they are having issues of pain and other symptoms--they've all talked about the treatment. And I think it's because there's not a whole lot that doctors have to offer; and there's no room for magical thinking that the treatment is going to work for them, because it's inevitable. They all will die, and they all will die in mostly the same way. So I think it's kind of, ALS is sort of like a window into the way things used to be; and people used to talk more because they didn't have a whole lot else to offer. There weren't treatments that really could cure you. Russ: So you are saying that, in the old days--whatever that means--people felt an inevitability about the process once they got to a certain point. And now, because of the innovations in health care of all kinds, there's more to choose. Is that summary correct? Guest: Yeah. Yeah, I think so. My father graduated from medical school. We both went to Northwestern. And he graduated in 1953. And he tells this story about when he was a senior medical student, staying up all night with a patient dying of liver failure and how he talked with him for many hours. He was homeless, and about 24 hours before he died he pulled a crumpled piece of paper out of his pocket and it was a license to practice medicine in the State of Illinois. And he was dying of liver failure because he was a homeless alcoholic. And my Dad talks about that that was like, and talking to him. I graduated medical school in 2000, and in 2000 you didn't sit up all night talking to a dying patient. You were--if you were homeless and had no family, you were busy moving them into the intensive care unit and putting them on life support, probably; and running down all their tests, and CT scans (CAT scans, Computerized Tomography scans).

13:43 Russ: So, you have a very--I mean, every medical specialty has some unique aspect to it. One of the things that always fascinates me about the modern world is how specialized it is. And one of the things I often think of as an example of that is medical care. A hundred years ago, you were a doctor. Period. And now, you are not just a doctor; you are not just a cardiologist: you are a pediatric cardiologist. Specialization is so unbelievable. So, your specialty is this interesting, it seems, of talking, listening, helping people decide, providing options, administering options; probably consulting, I assume, with family and the patient in some situations, and the primary care doctors. It's a somewhat complex job. But my first thought hearing about it is it's a depressing job, because--pretty much, you don't save anybody. They are all going to die. So, is it a depressing job? Guest: No. It's not depressing at all. A lot of people ask me that. I'll say when I give talks to med students and residents, you know, I haven't helped anyone really live a lot longer in 10 years, but it doesn't mean that my job is sad and depressing. I have a lot, because of my training, of skills in communication. And I think that one of the really depressing things for physicians when they are trying to talk to patients about the end of life is, it doesn't go well. And an oncologist will say something like, 'Well, your cancer is really getting worse. You can't breathe now, and your lungs are full of fluid, and you can't even get up to go to the bathroom. And so I think we really need to start focusing on keeping you comfortable.' And, some patients and families will become very angry, 'Well, what do you mean? Isn't there more that you can do?' And then the oncologist will say, 'Well, no, there's nothing more that I can do.' And we can talk about why that's not a very good approach. But, I have a lot of training in communication, and psychology, and how to kind of help patients and families accept limited prognosis, understand what their choices are, in a way that doesn't focus on abandonment, and doesn't focus on-- Russ: Despair. Guest: Yeah, despair. I'll talk a lot about how there's a lot that we can hope for: 'We can hope that you can make it till your son's graduation next month; we can try to help your breathing get better; we can help your pain get better. But we have to prepare in case things change in the future.' I also work as a hospitalist--I am an internal medicine doctor, but up until recently I took care of regular hospitalized patients. And a lot of times you are doing things that are uncomfortable. You are putting in big central[?] lines in people's necks, you are sending them for MRI (Magnetic Resonance Imaging) where they have to sit in the tube for an hour; you are putting needles in their back to take spinal fluid out. You know, and it's painful. With my job, I just get to help people feel better. And you get to learn about people: you get to learn about their life. I was a history major in college; I find people very interesting. That's why I like your podcast a lot. I learn a lot about different--people's history, their past, their family life; how they haven't talked to their daughter in 20 years but we're going to help them get back in touch with her before she dies. I mean, that can be very uplifting. Russ: That must be extraordinary. There must be some days that are very moving and uplifting. There must be some tougher ones, too. Guest: Yeah. I think it's really hard when people are in denial. Denial can be a protective thing. I'll tell the residents that you don't want to just break that down, someone's denial; but you want to kind of help them move along. Sometimes you'll just see patients who you know are going to die and they are not accepting it, and so you see them suffer a lot--get a lot of life-support treatment and things that are not going to help them--and make choices that you don't agree with. But it's a free country. We don't live in a totalitarian state, so you have to accept that even with the best communication, some patients will make choices that you don't think are good. Russ: Let me ask you about the psychological side, though. One of the things I really liked about D.G. Myers because it reflects some of the understanding I have of the way some people at least feel about disease, is he talked about how much he hates the phrase 'battling cancer' and this idea that there's something heroic about it. But there is a belief--and I think it has some basis in science: maybe it doesn't--that optimism is healthy. Optimism--not giving up, denial, it's good because it helps the patient--I don't know--marshal some enzymes and I don't know what else, but that it's healthy. Do you think that's true, or not true? Guest: Um, that's a good question. I think that for some patients, denial can be protective. And if they're not ready to accept a limited lifespan, that denial can protect them. Russ: But is it productive? Does it help them fight the disease? Guest: I think that's really hard to measure. Russ: Yeah, I do, too. Guest: I don't know. I sort of have some of the concerns you voiced before.

20:20 Russ: So this raises a question I've often wondered about, which is how much control people have over when they die. My favorite example--I've probably mentioned this before on EconTalk, but John Adams and Thomas Jefferson both died on the same day, July 4, 1826, the 50th anniversary of the Declaration of Independence. Of course, it could just be a coincidence. But I felt that, psychologically, they had a desire to make it to that day; and they may have "given up" in some dimension before that and died sooner if it weren't for that arbitrary 50-year anniversary. Do you see that phenomenon, people hanging on till some event and then seemingly giving up and going? Guest: Yes. Yes. I think, as I said, you see it when there's some event that somebody wants to live for. In Southern California, where I work, we have a lot of immigrant patients; so oftentimes we are trying to get people across the border from Mexico; and patients will wait to try to see their relatives. Patients--we'll be able to help patients get to South America, and lot of patients will make it so they die there. So, seeing someone or making peace with a family member can be really important for people. And so people will suffer through a lot. I read somewhere: a family member of a dying patient, said, that death is not painful but it's the resistance to death that is painful. And so, patients will resist it if there's something important for them or if they can't accept their death. I do think--one of the things that I feel a lot--death, people will joke and they'll say, 'Well, in America you all think that death is optional.' And Europeans will say that about our escalating costs at the end of life and how many people go to the intensive care unit. But I do think there's some aspect of death--the time of death is a choice now. Because when you have a terminal illness--like, say you have advanced cancer, even if you come into an emergency room and you are actively dying and everybody looks at you and says, 'This patient's dying,' typically what will happen is the family member who is with them, or the patient, will be asked, 'If your heart stops beating or you stop breathing, what do you want us to do?' And we can talk about why that's a terrible thing to ask, why it happens. But they get asked that. And then, typically the patient will say, 'Well, I want you to do everything.' And so even though everyone recognizes they are dying, the patient will get put on a ventilator to help them breathe and give them medication to keep their blood pressure up, and they'll be whisked off to the ICU (Intensive Care Unit). And the decision will have to be made later, to withdraw the life support and allow, what we call 'allow', natural death. So that is a really common scenario. So, in order to actually die, like people have to make this almost conscious choice. Because medical care is this runaway train that will just keep you going and flog you over and over until either you decide, 'Enough,' or you just die-- Russ: Even in the face of that.

23:57 Russ: So, you talked about what was rewarding in your job. Are there things that you find harder than others? For me it seems unimaginably difficult, and the communication part--you mentioned how doctors have trouble communicating bad news. Most people do. And certainly doctors are not selected for the ability to deliver bad news in a way that's helpful or comforting, and that you've been trained in trying to do that. Must be still incredibly hard. Are there some days that are really tough and you come home and you think, 'This is too hard'? Guest: Yeah. I think--up until recently I worked as a hospitalist and doing palliative care in a hospital at one of the University of California hospitals. And that was very challenging. One of the things, too, is kind of trying to interact with the other doctors, you know, in a way that is productive for the patients and the families. A lot of times, say if you have--an example is, one case I worked on where a patient had really advanced disease in his aorta. And so his aorta, just a big blood vessel in the belly, burst. And he was a man in his mid-80s. And there's about a 50 or 60% mortality rate, if you have that happen to you. But you can do an emergency surgery. And so he had this surgery; and he had it repaired by a very good vascular surgeon at our hospital. And I actually saw the patient before he went to the operating room; and I was actually working as a regular doctor--I was hospitalist and doing medical consulting, which is to try to help optimize the patient for the surgery. And I, guess I'm[?] a palliative care specialist also, I asked the patient, I said: 'Things don't go well and you don't recover well, what is the quality of life that you need to have in order to want to live longer?' And he said, 'You know, I don't want to live in a nursing home permanently. I don't want to live hooked up to machines.' And so he had the surgery. And he didn't do well. I mean, he had long term rheumatoid arthritis; he'd been on steroids for a long time; he had kidney failure. All of that got worse. He is on dialysis. He was unable to come off the ventilator. And he--you cannot stay on the ventilator for more than, typically, a couple of weeks before a decision has to be made: Either you are removed from the ventilator and are allowed to die, or you are what we call trach[?], where you have a hole put in your neck and you are hooked up to the ventilator that way and you have tube for feeding. And I met with the family and the surgeon many times. And--it was really hard because I knew what he had said. And I also knew that, was it impossible that he would recover from this? Well, no, it wasn't impossible. But, you know, people that get trached[?] and pegged[?] [percutaneous endoscopic gastrostomy] and sent to a facility, the typical survival, mortality in a year is somewhere between 50 and 60%. Someone who is 82 and who had just had a ruptured abdominal aortic aneurism, it was a lot lower than that. And so, it was really hard; because the surgeon was a really great guy, really caring doctor. But he said to me--I said, 'You really want to trach this guy? You really think that that's the right thing to do?' And he said, 'I'm just not ready to give up yet. I really think there's a chance that this guy can pull through.' And when I'm working with patients and families, I say, you have to--it's their decision. It's not your decision. You know, and it's hard. And I don't want to fault him. I think he's very caring. But the patient did end up getting trached and pegged[?], and transferred to what we call an LTAC--a Long Term Acute Care hospital. And we can talk about the growth of those and what that means for medical care later. But, it was a--those kind of things, when you feel like patients get treatment that they wouldn't have wanted--that's hard. Russ: But surely must have the opposite situation, too, where a patient says, 'I don't want x, y, or z'; you give them x--somebody forces them to take x, y, or z; and then they are glad. Do you ever have that? It strikes me that, knowing what we want at the end of our lives, when we are say--well, you should make that decision when you are in good health. And of course it's not obvious that you are fully informed. It's not something we get to experience lots of times or get practice with. So it seems like an inherently difficult problem. Guest: Well, yeah. I agree. It's very difficult. And it's hard to know--you might say right now, as you are a healthy man, fairly young, you may say, 'I wouldn't want to live if I ever had to go live in a nursing home. That just would not be acceptable to me. But later on in life, you know, maybe that choice comes up, and maybe at that point you are, 'Well, this is better than being dead, so it isn't so bad.' So to say things like, 'I would never want to live if x, y, z'--we call that advanced care planning. I think it's helpful. But, I don't think it's a perfect solution. I'll give the example of my own father. He's 84. He's an ophthalmologist, very bright, active guy. And two and a half years ago, he crashed into a broke; he broke 5 vertebrae in his neck, almost died. And he had told me before that, he was kind of extreme. He said, 'I never want to live if I'm in any way mentally impaired.' He'd watched his brother die of Alzheimer's, and he's like, 'I don't want to be in any way mentally impaired. If I'm at all mentally impaired, don't do anything to keep me alive.' And I'm like, 'Okay, that's a little extreme. But okay.' Well, now, he has some mild brain injury. He gets confused. He probably couldn't live alone. He does get along very well, and he can still read. He can't practice medicine. But he's very happy. He's a happy guy. In some ways he's happier now than before. Russ: Yeah. Guest: But it's kind of an example of the limitations of advanced care planning. I think the main thing that you can do is to choose someone to speak for you. That's what we really stress as the most important thing. So, the person that you pick should be the person who knows you the best; and that's why legally, if there is no one directed it's always your spouse, followed by your adult children. And then to have, kind of conversations, with that person about--mostly to give them permission, to say, well, if it looks hopeless to you, or if I get to the point where I can't communicate in a meaningful way, or I can't toilet myself, I can't get up out of bed, you know, then to me that's not really quality of life.

31:32 Russ: So, you and I talked before we recorded this about an interesting phenomenon that this brings up. Which is, it seems that the best person who could speak for you would be your spouse, or your children. But of course they are complicated sometimes. And their relationship with the patient is complicated. And sometimes they are eager to try treatments for themselves on behalf of the patient, rather than what the patient would want--because they have their own motives, their own desires. They want the patient to live longer so they can reconcile with them, or whatever it is. So, that must be incredibly difficult. Guest: Yeah. Those are really challenging situations. And a lot of times families who are more cohesive, for whom the relationship is better, often times have an easier time letting go. And sometimes it can be families, who, there's a lot of anger and unresolved issues--a lot of times we'll have families where there's multiple children and they have differing opinions. Some haven't seen the patient in 20 years. And they are often the ones that want to keep the patient alive, because they feel guilty or there's other issues. Sometimes you see interesting economic things come up, or, say, someone is getting money from Medicaid for in-home support services. And, you think to yourself: is this a conflict of interest; do they want to keep them alive because "they get the check." Russ: Yeah. An awful thought. But probably sometimes relevant. Guest: Yeah, it can be. And it can be very tricky how you bring that up. I think more frequently I see people make decisions that are economically very bad for them, in order--because they really want to continue to keep a patient alive. Like, they forego work or the money they are getting for in-home support is much less than they could make otherwise. So I do see that happen a lot, more rarely. But I see docs--you know, people a lot of times say, you have to put other things aside and just think about what the patient would decide if they could speak for themselves and that that's your job. That's a very American, individualist way of asset-goal[?], surrogate decision making: You're the spokesperson for the patient and what would the patient say? And that can be useful. But then, in California we have a lot of cultures for whom the individual and their self-determination is not as important. So, sometimes, I'll have an Asian family who feels like, no, the most important decision maker is the family, and it doesn't really matter what the patient wants because it's the family that comes first, not the patient. So, you do actually have to learn about other cultures and how they make decisions. It can be very humbling, and very interesting. Russ: The other thought I had, which we're going to talk about in a minute, is that of course it's very hard to be that Smithian impartial spectator, because you of course as the doctor, or as the family member have various incentives that are impinging on you related to that decision; and it's easy to convince yourself that you are doing what's right for the patient when it's actually better for you. So that's always, I think, the incredible challenge of these situations. Having said that, I'd rather it be a family member than probably a stranger appointed by the hospital or the government to make those decisions. There's no easy way out--these are inherently tough. Russ: I want to talk about something that came up in the D.G. Myers episode that you wrote me about, which is: you really liked the fact that he wanted honesty. When he had a certain amount of time left to live--say, it was 3 years, 5 years, or 2 years, whatever it was--and of course there's no certainty about these things; but he appreciated when his doctors told him the truth. And he really resented it when they sugar-coated it or pretended things were going to turn out otherwise. Why is that so important, and why did that resonate with you? Guest: I think it really resonated with me because I think in my work, and then my friends and colleagues who work in, say, cancer or pulmonary or[?] cardiology, or pediatrics, where you are dealing with very sick patients who are terminal, it can be rare. When someone comes in and they say, 'I want to know my prognosis; I want you to tell me how long I have,' you sort of breathe this sigh of relief because you are hoping that they will ask you. Russ: Why? Why is that important, to you? And to them? Guest: Because they are giving you permission to talk about that the end of their life is coming, and then it opens up the door to make choices about treatments that either can help enhance the quality of life that you find acceptable, or just to kind of talk about preparing. We talk about and care a lot about this idea that we should try to help patients have what we call a 'good guess'. One time I heard someone give a lecture and they said that Yogi Berra once said that the only good guess is someone else's. So, nobody wants to die; but a good guess is one in which you've prepared; you have your affairs in order. I can't tell you how many times a patient will come into the hospital, when I was working as a hospitalist; and we'd admit the patient; they'd had cancer for a year, metastatic, terminal cancer for a year. And they come in with a pneumonia and that's going to be the end of their life, and the spouse is sitting there crying, saying, 'I don't even know anything about the bank accounts or where any of the money is.' And you're saying to yourself: 'Are you kidding?' Russ: 'What happened there?' Guest: Yeah. They're so unprepared. And then they wind up in the ICU and then for no reason on life support; and the family has to make a decision to stop it. It can be very, very hard and a lot of times I'll see patients--so, here's a patient from last week. Patient came on to hospice, metastatic pancreatic cancer, 61 years old, diagnosed in April. Had had a rapid decline, none of the chemotherapies had worked, and she stopped chemotherapy a month ago. But she didn't come on to hospice until three days before she died. So she went a month probably with a lot of pain, a lot of symptoms; her oncologist was trying to manage it. And I talked to the oncologist and he said, 'You know, I talked to them about hospice and I thought it might be a good idea, but they said that they weren't ready.' And that's kind of much more typical of the type of interaction that I'm seeing, compared to patients like D.G. Myers. And it could also be that I get involved in the cases that are very difficult. We do get a lot of patients that get on very early, who forego treatment. But it just seems like--and I hear from oncologists it's very hard for them to refer patients to hospice earlier because the patients don't want to hear it. They're not ready.

39:33 Russ: So, let's talk about the incentives for that to happen, to not be ready, because that's one of the things you and I talked about before this recording, and I think it's very, very interesting. So, what are the incentives facing an oncologist to encourage realism? Versus false hope? And of course there's a gray area here because cancer and disease generally is not predictable. There's some statistical regularities--when you say there's a 50-60% chance, some people say, 'Oh, my gosh, 60% chance that I'm going to make it--that's phenomenal'; some who say, 'I have a 40% chance of dying; it's over.' So, and of course we don't really know what the chances are for any one person; we are talking about statistical averages for a population, to the extent we know them. So, you've suggested to me that oncologists have a natural incentive to encourage treatment. In the book I've written about Adam Smith that's coming out soon, I talk about how, if you have a hammer everything looks like a nail; if you are a surgeon everything seems that it's going to be helped by surgery. It's hard for us to think about doctors that way, but it can be true. So talk about what you've observed in that area. Guest: Oncologists have a very, very hard job. There's a huge expectation that patients will do well, and so--and more so in that specialty than any other patients will doctor-shop. So, a friend of mine who is a Fellow in oncology at Stanford told me you have to have a thick skin when you are an oncologist because your patient is always--you have to assume they are always going to go get a second opinion from someone else. So, if a patient comes in who has advanced metastatic cancer--and I have another friend who is an oncologist on the East Coast, and her mother spent 3 years dying of ovarian cancer, when she was a Fellow. And so she really feels like she's seen it up close; she feels like it's important for patients to understand that they have a limited time. But she said she started doing that when she started practicing and being honest and open and realistic; and then, she's like: 'My patients all left. They all went down to the academic center and downtown in the city,' where she was at, 'and they were much more hopeful and they have studies and they just wouldn't be negative.' So, I think patients, when they get diagnosed with cancer, are terrified. They are often at that point not ready to hear bad news. And the oncologist--unless you have a lot of training--I asked my friend, 'Why do you think it's so hard to refer people to hospice or to stop chemo?' And she was like, 'I was never taught. I was never taught how to have those conversations in Fellowship. I was taught how to give chemo, but I was never taught about psychology; palliative care wasn't part of our training.' And I think that's true. When I was working at the U. of California hospital, I had to sort of beg the oncology service to let me give lectures and let the Fellows spend time with us. I think that's changing now, which I think is good. I think people are getting more training. But I think historically people are not trained in it. So, I think a lot of times an oncologist will make what we think of as a mistake. So, say, a patient has an advanced disease; chemo is not going to be helpful; and they really think the patient should stop. They'll make the error of they'll link the suffering the patient's going through with an insistence that they should accept death. So, they'll say something like, 'Your cancer is getting worse; you can't breathe and your lungs are filling up; you are too weak, so we should just make you comfortable.' And then the reason the patient reacts badly to that is that they feel abandoned. And there's different ways to bring that up in a more productive way, but the oncologists don't have that experience [?] how to do that properly. What happens is they have that happen; they have the patient get angry, maybe leave them; and now they think, 'Well, you know, what's the point? I have 22 patients to see today in my office and if I try to open this can of worms, everybody just gets mad, and then I start running behind; and there's no incentive for me to do that. Why should I do that?' Russ: But it's a little worse than that, right? Because the oncologists make money from giving chemo. Is that correct? Guest: So, they--that's an interesting question. They did. So, up until about 2006, 2007, the oncologists would buy the chemotherapy drugs and then they would get reimbursed by Medicare. But they would buy it for much less than the cost of the drug. So they were making money on the chemotherapy. One of the things that Medicare keeps trying to do is plug these holes, where there's perverse incentives. So they did change that. I think it's still--I don't know how much that still happens. I think it probably does to some extent, probably not as much. But one of the big things in general in medical care is that we are a volume-based system. We get reimbursed on volume. So, if you see two patients in half an hour, you're going to make more money than if you spend an extensive time with one patient over half an hour. So the conversation where you are trying to convince someone to go on to hospice and stop chemo is a much longer, more involved conversation than saying, like what happened with my pancreatic cancer patient, when she was getting weak and sick, the oncologist said, 'Well, why don't we try and stop chemo for a while and see if you feel better? And then we can see what happens?' So, that's kind of typical. Then you push the conversation, the reality, off to another time. So, I think time. I think chemo may be a part of it; but you see it even in docs who are salaried--at either Kaiser's or academic centers who don't make money on chemo. So I do think it's part of it--there's many different pieces. So, I think that is an aspect of it; but also it's a time. Doctors complain mostly to me that they don't have the time or the skills to have these conversations. And they are not incentivized to do so. Another thing that's interesting, and it's come up a lot in palliative care, this idea of should we have, should there be a detriment: if you give chemo to a patient within two weeks of death, should that be something that counts against you in some way? Right now it doesn't. And to oncologists' credit, it only happens somewhere between 5 and 8% of the time. It happens in surgery. So, in surgery, your 30-day mortality is tracked carefully, and published, I believe. So, oncologists--so surgeons will talk openly and say, 'Well, I'm not going to do surgery on you, because you have a very high chance of dying. And I think it's too risky.' Russ: But this is nuts. Do you realize how--this is your world, Becky, so it's normal to you. But for me on the outside, right, it's like, think about this; and I'm very sympathetic to this idea that some treatments aren't very helpful and they are just done because people feel they have to do everything and sometimes that hurts the quality of life. But the idea that I want surgery but the doctor doesn't want to do it because it might be bad for his stats--it's like the guy, to pick a really unfortunate, weird but very accurate analogy: At the end of the half in basketball, a guy has the ball, 60 feet from the basket. And it used to be, with 1 second left, you'd throw up a shot. It's really low probability, but you might make it. And it's a 3 pointer. But now people don't even take them because they don't want it in their denominator of their shots attempted, because they are probably not going to make it. So that's what you're telling me. Of course it's crazy already: the patient might want the surgery, or the family might, because they're not paying for it; it's being paid for by the government or by insurance or whatever. But this is crazy. Do you see that? Guest: I do find it interesting that the thing that you're becoming outraged about is the withholding of medical care. And that's just sort of an interesting aside. Russ: What, in 2014, because we "spend too much"? I'm open-minded to the possibility that we spend too much; I think we do spend too much by the definition of, if we had to pay for our own medical care and rely on charity, there'd be less medical care, and most of it, a lot of it, was not, I think, money well spent because we're spending other people's money. But I certainly don't think it's inherently bad to do--I like medical care. I'm a big fan. Guest: Well, I will say that it could be a bad analogy. Because there's many things that don't count. So, like, the patient coming in with a trauma who is almost dead and the only way to save him is to do emergency surgery. Or the patient who has a ruptured triple-a (Abdominal aortic aneurysm), abdominal aneurysm, like our patient whose mortality is 50, 60%. Many doctors take patients who have very high mortalities. So it--it's probably not a good thing to spend a lot of time on because I don't know as much about it. Russ: I take the point. And I certainly--my poor grandfather died after open heart surgery when he was in his 80s. I saw him--when I went to see him, he was in the hospital, he was just so frail and so sad-looking. And I'm thinking, 'Who thought it was a good idea to open this poor little man's chest?' Now, of course if he'd survived I'd have thought the opposite. So, maybe it's just the probabilities, that it's hard to assess them. The idea, though, that someone would not want to work on me because he thinks I'm a long shot is a little bit scary. That's all. That's all I meant. Guest: But why is it more scary than people going to the intensive care unit, being put on life support machines, when they are 98% dead? Or intensive care units being referred to--one pulmonologist I worked with said she feels like she's working in a warehouse for the dying. That doesn't seem to upset people as much. Russ: Well, I don't know. I'm not sure. That might upset me plenty if I knew more about it. It's one of my questions for you.

51:02 Russ: So, talk about a question you had, a topic you had sent me in advance, which is how death has changed in the United States and the massive growth of ICUs. I don't even know about that. So, tell me about it. Guest: So, intensive care units are where--it started in the 1960s; before that they didn't really exist. And life support as we know it didn't really exist. So, if you were, say, a very old patient with advanced Alzheimer's dementia, typically those patients will all eventually die of either pneumonia or a urinary tract infection. That's the mode of death. So, an 85-year old comes in with pneumonia; she's breathing very fast. She would die unless the antibiotics started working and her lungs got better. People who trained in the 1960s and 1970s, and even into the 1980s, you would see a lot of patients die. But starting in the late 1980s, say 1990s, and then when I was in med school, you--death becomes a choice. Someone can come in very elderly and very sick; unless they have what we call a Do Not Resuscitate order, they will be put on life support. Say you are an ER (Emergency Room) doctor; you have a really busy ER. You can't spend a lot of time on this sick patient who comes in from the nursing home who is breathing 40 times a minute--less than 20 is normal--figuring out--either they do have a Do Not Resuscitate or they don't. And if they don't, even though they are 95, I have a high level trauma coming in in 6 minutes and you are going to get intubated and sent to the ICU. So, the ICU growth has been just phenomenal. And we have more ICU beds per hundred thousand for any country except Germany I think has a little bit more. But most European countries have much, much less. The hospital that I worked at, the U. of California hospital, had 250 beds, and over 60 ICU beds. In med school I did a rotation in England in one of their ICUs. And in England and in most European countries, the decision to put them on an ICU still resides mainly with the physician. So the physician, if someone comes in and they're elderly, have a chronic illness over 80, those patients don't get put on life support. They don't go to the ICU like they do here. But here, they go unless they have a Do Not Resuscitate order. Russ: But it seems to me the key question is: What percentage of--Right, it's a chilling, it's disturbing. The question is: How many of them get off it, and get back to life? Of those put into the ICU? That would seem to be the relevant question. The fact that we have lots of beds could be a good thing. But doesn't it depend on how many make it? How many do? Do we know? Guest: Well, in general, the immediate mortality rate is 10-20%. Which doesn't seem like much; but that's really high. And it's hard, because--so one of the things that you probably would find interesting: one of the things that's very regulated in the American health care system is hospital length of stay and ICU length of stay. Because Medicare will pay a hospital not according to how long the patient stays but according to the diagnosis that they come in for, or the main diagnosis of the stay. So there's a big push--and that's one place where palliative care can be helpful to a hospital's bottom line--is there's a push to keep patients on a short length of stay. So, here's an example. Patient with advanced emphysema and Alzheimer's dementia on dialysis, 85; comes into the hospital with pneumonia. Is put on life support and cannot wean off the ventilator--meaning we just can't get them off the ventilator: the lungs are too weak. And the family, after multiple conversations, still wants the patient to be on life support. Well, the hospital does not want that patient to remain in the ICU. What they want is either withdrawal of life support and allow natural death, or, what they call trach-peg and transfer. Which means you put a tracheotomy in the neck, hook them up to the ventilator that way--oh, and by the way, they can't talk when that's in--put a feeding tube in the stomach, and transfer them to something called an LTAC, or a Long Term Acute Care facility, which the definition of that is a hospital with the average length of stay of more than 25 days. And that's where a lot of these patients that can't be weaned go. The mortality in those LTACs for a trach-and-pegged patient is somewhere between 50 and 60%, so over half the patients will die in a year. And what's interesting is that 10 years ago there were about 100, a little over 100 of these facilities in the United States. There's now over 400. Russ: It must be a nontrivial portion of our health care costs, too, right? Guest: It's massive.

56:32 Russ: So, on the surface, that's--I don't know what to make of that, to be honest, except that it always reminds me of F. A. Hayek: "The curious task of economics is to demonstrate to men how little they really know about they imagine they can design." And once you have this totally messed up, weird compensation, pricing/diagnostic medical care system that's not anything remotely related to market exchange, some perverse and strange things are going to happen that you always wonder about. But on the surface, without knowing any of that, just looking at the fact that we spend an enormous amount of money with only a 40-50% chance of survival could be a wonderful inspiring story or a very depressing story. I don't know what to make of it without more information. So I guess the question would be: You know, you say it's 50-60% mortality in the LTAC: so the 40-50% who get out of there: Are they back in 3 days? They die anyway? Do they get to go home and play tennis? What happens to them? Guest: Right. So that's a big question. There are some portion of them that will go back to living independently. Meaning, maybe a quarter of them will be able to live at home. But a huge percentage of them, maybe half of those who survive will spend the rest of their lives in a nursing home. And so, I think--there's definitely a place for this. There are patients who just really need a prolonged wean and can't get off the vent in two weeks, and it's realistic. But I think what we are seeing over and over are these very old patients with multiple co-morbidities--I mean, people on dialysis, people with dementia. I mean, dementia itself is very, you know, there are a lot of people with very advanced dementia from nursing homes who are getting things like dialysis and multiple hospitalizations. And so to see a patient--another thing that I haven't talked a lot about but one other sort of thing that I'm doing is helping a Medicare HMO (Health Maintenance Organization)--so this is a Medicare insurance company. And they get paid a per member, per month rate to cover all the costs. And they're interested in trying to improve care at the end of life. But they're also interested in improving their cost issues. And so they've started a program where nurse case managers develop a phone relationship with patients who are terminally ill. And help them understand what their options are and help them talk about hospice and other options. And it can be seen by detractors as, oh, you are just kind of shipping everyone off to hospice because you want to save money. But they are kind of filling a void. And what I've been doing is help train them, train the nurses, in how to have these conversations. And every week we get together and the nurses tell me different cases that they've had that have been challenging. And so, I think to kind of, shine the example, this was just last Wednesday's patient. So, a 76-year old male, who has Alzheimer's dementia, and he has renal failure. He's not on dialysis yet but he's getting close. And emphysema. And he has had 8 hospitalizations since January; and 5 nursing home stays after 5 of the 8 hospitalizations. And he's just continually, continually getting weak. And his last hospitalization resulted in his being put on a ventilator in an ICU for 3 days. So, the nurse--the family's kind of dysfunctional; the sons don't talk to the patient's wife; the wife's estranged from the patient. And each of these hospitalizations, no one has ever talked, tried to get the family all together and talk about the fact that this man is slowly dying; and do we want to keep just re-hospitalizing him, sending him to nursing homes? All that kind of thing. Or do we want to really try to kind of let him know what the prognosis is. And no one had done that. The hospitalist hadn't done that; the primary care hadn't done it. So, the nurse is telling me about all the different conversation she had, and she finally was able to get through to the hospitalist to say, 'Will you please just let hospice come in and evaluate the patient and talk to the family?' And she did; and the patient got discharged on hospice. And now he's on hospice. He's still alive. And he's doing well. Um, but, you know--8 hospitalizations in 9 months? Kind of crazy. Russ: You know, the whole--it kind of strikes me, again, as a nonspecialist, an outsider--and by the way, I have to make my joke. Which is, people say, 'Well, you're a doctor'; and I say, 'Yeah, but not the kind that helps people.' I do have a Ph.D., but it's in economics, alas. As an outsider, it's just such a strange system we have created/helped create, with a situation where, from the outside it seems reasonable for a lot of people to say, 'It's time for you to give up.' But on the other hand--and these are patients, I assume, who don't want to give up--on the other hand it's just strange that anybody would make that decision. There's no obvious answer as to who should make that decision: a panel of experts, a panel of insurance experts, a panel of doctors, a panel of clergy, a panel of ethicists, family members. They are all flawed. So, the current system is--what's disturbing about the current system, of course, is that it is, whether it's designed that way or not, its effect is to spend enormous sums of money with perhaps very little return. But on the other hand, some of that return maybe is precious. I don't know. Guest: Oh, yeah. It's very hard when people will say, oh, I can't believe they are going to give that new chemotherapy which only prolongs life from 6 months in kidney cancer to 10 months--like, that's just silly. And I'm like, 'Yeah, but if it was your last 10 months of your life, that's like a 40% improvement.' Russ: Yeah, two-thirds, actually. Guest: So I'm not saying that these are not the things, we should stop doing these things. Yes, they are very costly. But I'm just talking about kind of the low-hanging fruit, which is: patients who are clearly dying who are suffering a lot. But I do think that one of the big things, reasons that it happens is that doctors have not been trained and are not reimbursed adequately to have conversations about the end of life. They are not educated about prognosis. I mean, if you asked a lot of doctors, well, what's the number one thing that tells you how long a patient with cancer is going to live? Well, the number one thing is how functional they are. Like, do they get out of the house; do they get dressed by themselves? And how that's changed over time. Most people don't know that. So, doctors don't have as much education as they could about predicting, or about prognosticating; and there is not a stress on psychology of conversations. And even something as simple as: Doctors should never say, 'There's nothing more we can do.' Russ: Right. It's like--let me just flip the switch off here; let's turn off the lights and go home. Yeah. It's the wrong strategy. Guest: Yeah. Or with DNR (Do Not Resuscitate). We haven't talked about DNR, which is--nobody's educated in a systematic way about how to have a Do Not Resuscitate discussion. People will say, well, if your heart stops beating or you stop breathing, what do you want us to do? And that's like--and that, they assume, is shared decision-making. Russ: Yeah. Guest: Well, you haven't given a lot of key information there. Like, is it going to work? And what's going to happen after? You know? Russ: For sure. It's incredibly challenging moral, ethical, personal, physical--a lot of what we're talking about I assume is technological. The fact that, thank God we're better at keeping people alive. But it does come with a set of complications that, as you say, we're not so able to deal with.