Today’s episode is one of my all-time favorites, Stephen Dubner also loved it, so much so that he asked if he could use it as an episode of Freakonomics Radio, where it aired last December. Today, though, for the first time, this episode is back where it belongs in its rightful home, here at People I (Mostly) Admire.
If there’s one topic that nobody wants to talk about, it’s death. So, it tells you something that my guest today, B.J. Miller, has a TED talk on dying that has garnered nearly 15 million views. Simply put, B.J. thinks that our society’s approach to dying is completely wrong, and he’s on a crusade to change the way we die. He’s a physician who has seen over and over how our medical system fails people at the end of life. If you care about the quality of your own death or the death of your loved ones, you owe it to yourself to hear what B.J. has to say.
MILLER: We’re sacrificing anything that might resemble a quality of life for this potential for a few more minutes on the planet. And that’s a tricky bargain.
Welcome to People I (Mostly) Admire, with Steve Levitt.
B.J. Miller is a palliative-care physician who’s worked at the University of California, San Francisco’s Cancer Center. He’s taught at the med school there, and he’s worked with the Zen Hospice Project in San Francisco. He now sees patients through an organization he started to help provide support and guidance to the terminally ill. It’s called Mettle Health. Now, mostly, I just try to have fun on this podcast. But my hope is that this conversation today will actually turn out to be important for some listeners. Like most people, I generally try to avoid thinking about my own death, but preparing to talk to B.J. I’ve thought a lot about dying, and I’m glad I did. Maybe the same will be true for you.
LEVITT: So, right off the bat, I want to ask you about death and education. I’ve been obsessed with rethinking what we teach in schools — I think we should teach a lot more data analysis and a lot less trigonometry. I think we should teach mindfulness and conflict resolution and maybe a little less geography. And as I was preparing for this interview, it struck me that maybe dying should be a topic that’s on the agenda in high school. What do you think about that?
MILLER: Oh, yes, brother. Pre-high school. We have sex-ed. Death-ed seems to make sense. Death is even probably more — I don’t know what’s more pervasive, sex or death? I don’t know. But we have other ways of teaching basic human phenomena in school. Why would we isolate death from that pile? I’ve gone into schools — third through sixth graders — to have conversations about death. There was this one example — I was in Petaluma — and I could tell the teachers were a little nervous. This guy’s coming in to talk about death. And I put up these cartoon slides, and the first one was a bunch of animals on it. The caption just said, “Everyone dies.” And this one little kid, he raised his hand, and he said, sheepishly, “Do you — do you know what it says on your — do you know what your slide says?” He felt sorry for me. Like, oh God, I may have stumbled into something. And I said, “Yeah, buddy. Yeah. Yeah, everyone dies. I meant that. This is natural. This is normal. That’s what living creatures do.” Then this other kid raised his hand and said, “Oh, hey, Jimmy, my grandma just died a week ago.” And then, this other kid pops up and goes, “Yeah, and my snake died —”And one kid’s like, “I miss my grandma.” And he’s crying. And then, these kids are hugging him. Quickly turned into this, like, love fest. It was just amazing. All the adults had to do is, in a sense, get out of the way. These kids inherently knew what to do. I’m reminded of this all the time in medical education. Like, “How do we teach empathy?” Well, for the most part, you get out of the way and stop gumming it up. It’s a thing that we have in us. And you can cultivate it, but you don’t inject it into someone. You honor it. And you foment it. And you love it. But yeah, I think we should teach the realities of life, including death, in school, as part of our fundamental education. I can’t imagine when would be too soon to start that. Death is everywhere. The bugs on your windshield, and that goldfish that you got at the fair. Leaves falling from a tree. Once you start tuning in, it’s not this exotic thing at all. It is absolutely wrapped up in daily life one way and another. And all you have to do is turn a little attention to it.
LEVITT: So, you founded an organization called the Center for Dying and Living, which has as its mission to “Reclaim illness, disability, and death as natural parts of the human experience.” Maybe you can explain what you mean by this, and why you think that’s so important.
MILLER: Gosh, we could start that conversation all sorts of different ways. My sense is that medicine, which is my training — I’m a physician. I come from the medical world. My life was saved by the medical system. And medicine has done very well in some ways. We’ve pushed back on all sorts of otherwise natural phenomena, oftentimes, to humanity’s betterment. But there’s also fallout from that. We’ve medicalized everything. In the last 150-ish years we’ve been seduced by the scientific method and treat illness and anything we don’t like as a problem, and then go to war with it. Meanwhile, the family, the church, the other sources of community and answers and support have shifted. So, people show up in the emergency rooms for things that aren’t strictly medical, per se. And phenomena like death that are natural and are going to come no matter what we do, have been sidelined and pathologized and turned into a problem that we’re struggling to fix. And it reveals a lot of cracks in our system and a lot of cracks in the thinking of the medical model
LEVITT: So, how about, just to anchor it, we talk about the process of dying? And as a palliative physician maybe you could just describe what dying is like for a patient in the traditional medical system, and what the idealized dying experience would be like.
MILLER: Yeah. What has become a more typical death happens very often in a hospital, you know, a building designed to circumvent nature in all sorts of ways. The place is geared to do anything but let you die. But yet, we end up in hospitals for all sorts of reasons. And so, more and more of us, are dying from chronic illnesses, right? Not some acute event where we’re walking around, doing our thing, fully alive, and then moments later we’re dead. That’s something of a storybook ending — we don’t do that much anymore. We now generally get a diagnosis of the thing that’s going to end our life months and years in advance, which is a comment on the success of the medical system. We can live with things that used to kill us, but eventually death will come. So, the conventional medical way — medicine doesn’t know when to stop. And it keeps offering things that may or may not be helpful. And meanwhile, you’ve got research imperatives and innovation imperatives pushing new things to try, all of which potentially forestall death, but they ultimately forestall paying attention to death and letting death seep into your reality in a way that you say, “Oh, goodness. Okay. My time is actually limited now. I need to address my loved ones. I need to reconcile here or there. I need to say goodbye. I need to make amends, etc.” And that all gets crowded out in the flurry of acute care. So, the conventional death ends up — push back, push back, try a new treatment, try a new treatment, deferring the bigger existential and spiritual conversations about closing a life, until it’s too late, until you end up in an acute-care hospital and a lot of machines and tubes. And then, we can actually keep a body going practically indefinitely. And so, then you’re in this awkward position where you have to “pull the plug.” So, all of this has just gummed up what is otherwise a very natural phenomenon, i.e. dying and death, which is what our bodies have been doing forever.
LEVITT: So, all of this fighting and treatment usually comes at an enormous cost to quality of life. And the trade-off, some of these chemotherapy treatments only extend life by a couple of weeks, while stealing the quality along the way.
MILLER: Exactly. You got it. Sure, I’ll put up with this or that pain. I’ll hold my breath to get through this procedure because maybe it’ll give me more time. But we’re making these trade-offs all the time. And then, we’re sacrificing anything that might resemble a quality of life for this potential for a few more minutes on the planet. And that’s a tricky bargain.
LEVITT: I’ve had the misfortune to watch the traditional medical system in action at the end of life, as my amazing sister, Linda, died of cancer. I just remember the indignities that she suffered in this traditional system, with the noise and the lights. And she had simple wishes like ice chips. But we were told that ice chips were a medical treatment. And so, we weren’t allowed to give her ice chips. Only nurses could give her ice chips, but the nurses weren’t there. And boy, it was an agonizing process to watch.
MILLER: Thank you, I really appreciate when people dare to share personal stories around this stuff. These aren’t just ideas or intellectual problems. These have real consequences for us as human beings. And I’m sorry, too. It sounds like you’ve experienced, Steve, this moment where, gosh, it’s hard. It’s sad. But it also can be beautiful and be a time for incredible sense of connection. And to see those moments, those opportunities lost, is sort of tragedy on top of a sadness.
LEVITT: You have an alternative to this clinical version. What does your alternative look like?
MILLER: In a word, I’d suppose it might have something to do with proportionality. I want to remind ourselves that the medical system, medical inventions — they’re there for us to use, not the other way around — This is part of the problem with technology. It ends up ruling our lives even though it’s promised to make our lives easier. So, I guess the answer here is, let’s use medicine thoughtfully and carefully, but let’s not over- rely on it as a system or as an intervention. If we can have conversations around what constitutes a meaningful life to any one of us — it’s a subjective question, you can’t apply pat answers, you can’t apply averaged situations, you have to dare to have these conversations — doctors and patients and families around a dinner table, individuals with friends — we all have to be thinking about the reality of life, which includes death. And if we can open up that conversation as a civil society and be less afraid and more welcoming of the things that nature holds for us, then we’re much more likely to have a sort of sober conversation, a realistic one, to feel a sense of where I stop and where others begin. And we have a chance at accepting our fate. In that way, we can use medicine, dip in and dip out, and not get stuck in it as it were.
LEVITT: I first became aware of you when you were working with the Zen Hospice Center in San Francisco. Can you describe the atmosphere in which people were allowed to die there?
MILLER: Yeah. So, if the medical model is filled with machinery and usurped bits of nature in the name of sterility, the alternative would be something perhaps a little more old-fashioned, or picture being at home. Picture being surrounded by loved ones and things you love — smells, quilts, just the environment, what it means to feel at home. Picture being in a bed with visitors coming and going, with people tending to your comfort, people shedding a tear with you openly, not being rushed, a safe place to have open-ended conversations and say hard things, peace and quiet when you want it, music when you want it, smells coming from a kitchen. In other words, this final esthetic experience or appreciation of this material life. We had that at Zen Hospice. We had an old Victorian here in San Francisco that was a home, and you felt it. And people would walk through the door and say, “Oh, thank God.” The building itself, the environment of care itself was part of the therapy versus part of the thing you’re trying to tune out.
LEVITT: As I hear that description, it’s hard for me to understand how anyone could disagree with it. Do people actually disagree? Or is it just hysteresis that keeps us on the path we’re on?
MILLER: I have yet to meet anyone who disagrees. But the “yes-buts” start stacking up. “Yeah, but there are certain things that only can be done in a hospital. We need to be in the hospital for this or that treatment,” but it turns out this or that treatment might have a 5 percent chance of working. And it turns out if you’d really had an honest conversation with that patient, they wouldn’t have wanted it in the first place. But the medical system is this huge, momentous — wheel churning. And once you get in there, it’s pretty hard to escape because issues around safety, like you were describing with Linda — on some level, that rule around ice chips made sense on paper somewhere. But in practical terms, once the goal shifted from protecting a pulse at all costs to gently honoring a person in their final moments — well, there’s a misfit in there. Privately, C.E.O.s, insurers will say, “God, I love what you guys are doing. I mean, hospice is so important. That’s where I’d want my mother to go. Keep doing what you’re doing.” And then, they put their professional hat back on. They’re stuck with a system that moves and bills in a certain way. It also comes up, Steve, almost like a marketing thing with health systems say, like, “Our patients don’t die.” Well, okay. Literally, a guy said that to me at the cancer center at U.C.S.F. I thought he was kidding. And this was a brilliant man. He was not kidding. There’s this collusion that happens between doctors and patients where everyone assumes that we all want another minute on this planet, no matter what, even though most of us don’t think that way. And we collude. We half-truth. We have this hope against hope masquerading as a positive attitude. And this is how we find ourselves, one step in front of the other, just going down these pathways in which we get stuck.
LEVITT: I certainly understand how systems have a life of their own. It’s hard to change them once you get going. One thing that, I’m guessing, is it’s actually much cheaper to die in a hospice setting — to follow the path you’re talking about, than this incessant reliance on technology. Is that true? And it’s interesting if that’s true that the insurance companies haven’t been more active in trying to figure out ways to support this approach.
MILLER: Yeah, this is absolutely true. It is generally much cheaper to die at home than in a hospital. We’ve known this for years. We’ve collected data that both the hospice and palliative care interventions actually save the system money, save people money, improve quality of life, lower pain, lower depression, lower anxiety. And yet, as we know, we humans aren’t always rational. So, even if you’re a pure bean counter, have nothing to do with the emotional psychology here, you’d still want to be advocating for the end that we’re talking about. And yet, here we are.
LEVITT: Do you think that insurance companies shy away from actively pushing this for fear they’ll be accused of trying to sacrifice minutes of life for dollars?
MILLER: Ding, ding, ding, ding. Correct answer, Steve. Yep, this is very much the case. There’s policy issues, infrastructure issues, medical-education and training issues, and then, the fourth pillar of the problem might be social awareness and willingness. So, right now we’ve had the experience of the death-panel charade in 2009.
LEVITT: Could you talk about the death panels? I have to admit, I don’t know much about it.
MILLER: Yeah. And what pricked this moment was, Earl Blumenauer, representative from Oregon, had dared to make this — this suggestion that health insurance — once every five years — pay for a doctor’s visit for that doctor to discuss advance-care planning with their patients. In other words, preparing for death, preparing for future care when you can no longer say for yourself what kind of care do you want. We use a tool called the advanced directive to state those wishes and protect those wishes. So, Representative Blumenauer was simply saying, “That seems pretty important.” That suggestion at the political level, turned into an accusation of a death panel, that this was just one step away from a room, some mysterious place where people are deciding who gets to live or die. In other words, 180 degrees from the truth, but that didn’t matter. The second you put the words “death panel” around a piece of legislation, it was more than dead. And killed conversation for years around this very simple thing of daring to ask patients what they want for themselves at the end of life.
LEVITT: Are you not insanely frustrated and angry about the inability of a system to do what is so obviously right?
MILLER: Mmhmm. Yes. Yes, I am. This is a daily heartache. We humans are revealing ourselves to be not entirely driven by rational decision-making. We are revealing ourselves to be afraid. But a larger view of humanity, our exquisite intelligence and our incredible folly, all wrapped together — this is life. This is a big expression of the human conundrum. So, yes, absolutely, it’s frustrating, Steve. And get used to it.
LEVITT: Yeah. Although, we have focused on the negative. I was looking at the data, and there’s been tremendous progress towards the use of hospice and palliative care, and I suspect also really critically coming way too late in life, that someone is counting it as going to a hospice if they spent three days in a hospice. But really, I think in a much more idealized system, these decisions might happen weeks, months earlier, and really give people that time.
MILLER: As a rule, that’s generally true. Roughly 45 percent of Americans who die each year die on hospice. In some ways, that’s great news. Nearly half of people find their way to this more loving mode of care. The hard news within that good news is that it’s oftentimes in the final hours that people finally let themselves elect hospice or are finally made aware of this possibility of hospice. I think the average length of stay is measured in weeks, even though you qualify for these services for many months, potentially even years. Yeah, there’s a lot of unnecessary suffering, people waiting way too long to get this support. So, we’ve got our work to do.
LEVITT: You must have these conversations all the time with your patients. What’s it like telling people that you think their life is on a relatively short path to ending?
MILLER: It is not an easy conversation if you’re doing this work well and if you have good time to create and foster a real relationship with your patients and families, this becomes, yes, a hard conversation because you love your patient. And you don’t want to see them die either. But we also know that when humans finally turn their attention to hard things, there’s often a lot of beauty waiting for you. And there’s something powerful about participating in the truth with people. Sometimes I do it well, and sometimes I don’t. And sometimes even when I do it well, it’s not received well. But that’s what we sign up for.
LEVITT: I suspect that part of our struggle with choices around death stems from how remarkably we’ve succeeded in modern life in removing death from view. If you go back to traditional societies, before hospitals were so prevalent, when infant mortality was high, when women died in childbirth, households had three or four generations under one roof. Death was just a part of life. And I think by locking death out of daily life we’ve turned it into this monstrosity.
MILLER: I totally agree with that. I think what you’re pointing to is the devilishness of abstraction. So, the more abstract we are, the more removed we are from the point of consequence of our actions — it just loses so much meaning. And so, we lose touch. When I was an intern in Milwaukee, I was just a fresh doctor taking care of folks in the hospital. And I remember a very palpable difference of people who are coming in from farms who were dying in the hospital and noting a difference in how they accepted the idea of death as part of the deal. If your daily life includes reminders that the circle of life is playing out in front of your eyes all the time, well, then you’re, of course, less shocked by the idea that you die too.
LEVITT: So, as you try to change the system, what levers are you trying to pull? How do you try to change such a massive system in the direction that you think it should be moved?
MILLER: Well, for all the difficulties, the intractable clunkiness of a system, it’s not hard to be a little optimistic when you realize we’re talking about situations that happen to literally everyone. In a way, that gives me optimism and hope that this is the least esoteric issue around. And therefore, we must get to it. But from where I sit, there are four basic channels here to work on. One is society. We’re all complicit in this. We don’t like aging. We don’t like death. This pursuit of youth, we spend money on anything that’s going to make us look younger. We’re all participating in that frenzied alienation of life’s harder things. We’ve got to wake up here. We have to not hand ourselves over to the medical system. We have to participate in our care. We have to learn how to say no. We have to be honest about how much we need each other, especially in the end of life. That’s on us as people. Another big pillar would be infrastructure, alternatives to these massive hospitals, these acute care havens that are important. I’m all for hospitals. But again, we lean on them too much. We have to create nursing homes that you would actually want to live in. And number three, would be the medical education and training. How do we conceive of illness and health? And how do we pursue it? There was the Abraham Flexner report in 1910. In 1910, we decided that research was the way forward and that clinical, medical patient care in a sense served the research versus the other way around. That made sense back then, but it doesn’t really make sense anymore. We are really ripe for a national overhaul of what medical education should be about. And I would love to see them revisit a mission statement. Like, what is this for, this enterprise of healthcare? Are we going to focus on diseases? Or are we going to focus on people who have to live with these diseases? We’ve been doing the former. And I think the latter is a much more refined and better way to go forward. Fourth would be the policy pieces, underlying all this and incentivizing these changes in the right direction.
LEVITT: What would you do if you had unlimited resources?
MILLER: Oh, that’s a beautiful question, man. If I had unlimited resources, I think I would set about some sort of plan of action to collaborate across those four pillars of change and marrying what I think needs to happen in society with my own pet interests. I love architecture and design and the aesthetic plane. I think I’d spend a fair amount of that dough on creating beautiful places for us to spend times of hardship, to attract us to these moments of life, rather than to repel us. Can you imagine if every community had a beautiful piece of brick and mortar in the fabric of society, and if you lived in that community, you knew that when it was your time, you were going to be loved and cared for in a certain way? And if you had the end more or less secure, how that might free you up along the way to play your guitar solo of a life a little bit more wildly, knowing that those end-of-life anxieties were going to be tended to?
You’re listening to People I (Mostly) Admire with Steve Levitt and his conversation with B.J. Miller. After this short break, they’ll return to talk about B.J.’s life-altering accident.
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LEVITT: So, now it’s time to answer a listener question. And as always, I am joined by my producer, Morgan. Hey Morgan, how are you doing today?
LEVEY: Good, Levitt. How are you?
LEVITT: Okay, what do you have for me?
LEVEY: Do you remember doing a Reddit “Ask Me Anything” about nine years ago?
LEVITT: I do. I remember it well, I was doing it to try to drum up excitement about my Freakonomics experiment coin toss, and it worked great. I got something like 10,000 people to flip a coin in the days after I did that. The only problem is that it’s permanently in the public record. So, my son who, when he was in high school, stumbled onto it, and he came to me: he said, “Dad, I didn’t know you drank all the time in college.” And I said, “How do you know I drank so much in college?” He said, “Oh, I was looking at your ‘Ask Me Anything’ from Reddit.”
LEVEY: Well, in addition to your son, one of our listeners named Reese was also looking through this very old Reddit ‘Ask Me Anything’ conversation. And Reese actually sent us a screenshot of the moment when someone asked you what you thought about Bitcoin. So, let me read the exchange for our listeners: Somebody asks, “Do you have an opinion on Bitcoins?” And then you respond, “I am utterly confused by Bitcoins. It seems like a bubble to me. But I don’t know much about it, honestly.” First of all, you guys were saying “Bitcoins” instead of Bitcoin, but has your opinion on Bitcoin changed in the last decade?
LEVITT: No, actually, if you ask me about Bitcoin today, I would give you the exact same answer. But I did go back, and I looked at what the price was of Bitcoin when I gave that answer nine years ago. And the price was $12 per Bitcoin. Now the price is about $50,000 per bitcoin. If you had invested $10,000 back then in Bitcoin, it would be worth $40 million today. So, that’s how wrong I was about Bitcoin. What’s interesting about this, Morgan, is that it’s not very often that your really bad predictions get remembered. When a person makes a great prediction, they make sure that everyone remembers how good their prediction is, but it’s really unusual for someone like Reese to dig through the wreckage of the internet to actually bring to the surface, a really bad prediction. And I think it’s great that Reese did that because we don’t do it enough. I take complete ownership over this bad prediction, because it brings such a great general lesson, which is: number one, how hard it is to predict the future. Number two, how in general people don’t get punished for bad predictions, and I think if people get rewarded for good predictions, they should also be punished for bad predictions. And the third thing is I didn’t understand how Bitcoin had gone from one-100th of a cent to $12. And that is a great signal — if you don’t understand the past, you’re not going to understand the future either. Maybe I should be embarrassed about how wrong I was about Bitcoin. I actually think this is an awesome, awesome opportunity to talk about all of the pitfalls of prediction.
LEVEY: So, Levitt, were there other predictions you made 10 years ago that turned out better than your views on cryptocurrency?
LEVITT: I think I have made a couple good predictions among the many that I’ve made, most of which probably were wrong. One we made 20 years ago — John Donohue and I — was that crime in the U.S. would continue to fall because of the effects of legalized abortion. And we recently published a paper that showed that exactly what we expected to happen has unfolded. And a prediction that I made that I wish hadn’t been true but turned out to be quite true was with Stephen Dubner in the book SuperFreakonomics, we suggested that because of private incentives, the attempts to reign in carbon emissions just weren’t going to work. And we predicted that the globe would struggle to try to control our emissions of greenhouse gases. And many people were angry at us, but the data have borne out that sad scenario just as we predicted.
LEVEY: Yeah, it’s true. And it’s really unfortunate but we’re even more in a crisis now than we were 15 years ago.
LEVITT: Yeah, what’s so frustrating to me, is that the approaches we’re taking now are exactly like the ones we were taking 15 years ago, where we’re asking governments to pledge to do the right thing. Rather than somehow taking the reins and using powerful tools, like a carbon tax or real economic sanctions against countries that don’t limit their carbon emissions. So, unless we switch gears, I fear we’re going to be in exactly the same situation 15 years from now, but with a problem, much, much more dire.
LEVEY: Well, Reese, sorry, we can’t give you more information on cryptocurrency, but good luck with Bitcoin. If you have a question for us, you can write us at firstname.lastname@example.org. That’s P-I-M-A@freakonomics.com. It’s an acronym for our show. Steve and I do read every email that’s sent, and we look forward to reading yours. Thanks.
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In the second half of my conversation with B.J. Miller, I want to get into more specifics about what you and I can be doing now to prepare for a better death. And also, I want to ask B.J. about his own extraordinary personal life experiences.
LEVITT: We haven’t talked at all about your back story. You had an accident when you were 19. Would you mind telling that story for the 10,000th time, I’m sure.
MILLER: Yeah. It’s part of my daily deal. When I was 19, I was a sophomore at Princeton. And one night my buddies and I were on our way to get sandwiches at the late-night market. And, back then, there was a little commuter train that runs right onto the campus. So, this train was just sitting there parked. It was after hours. We just climbed it like you’d climb a jungle gym. Obviously not a very bright thing to do, but we also didn’t realize what we were stepping into. And when I stood up on top of the parked train, I got close enough to the power source. And I had a metal watch on my wrist. And the electricity arced to the watch. And so, that was that — big explosion. And ended up losing my left arm below the elbow and both legs below the knee.
LEVITT: I’ve heard you talk about how you were able to adjust to the changes in your life. You grew up with a mother who was in a wheelchair and that had a really strong impact on your ability to come to terms with how your life had changed.
MILLER: Mmhmm. Growing up in the house that I did was incredible practice for life in all sorts of ways, including myself becoming disabled. Mom had polio when she was an infant, 18 months. And she has been progressively disabled from post-polio syndrome — used a wheelchair for much of my childhood. So, I was around a disability all the time. My mom and I are very close. So, that whole experience practically tuned me into how we help each other, how we need each other. But it also tuned me into the — spirituality or the more sort of identity and metaphysical issues about what does it mean to be disabled? How is that different from a “normal human being”? So, when I became disabled myself, it was a shorter fall for me in some ways. I don’t mean to oversimplify that, but just to say how invaluable it was to be exposed to the idea of disability at a young age was very informative and helpful for me.
LEVITT: So, the second thing that helped you adjust to your situation after the accident was switching your major to art history. So, tell us what it was about art history that helped you in your transition?
MILLER: I was in the burn unit in Livingston, New Jersey, for months. And there’s not much going on. You’re just lying still. And you’ve got a fair amount of pain that you’re dealing with and trying to wrap your head around all sorts of stuff. It’s just a wild, surreal experience. And it became clearer and clearer that I was going to survive this. And it was also becoming clearer that I was going to survive it with some meaningful changes to my body. And I watched my mind alternate between terror and pain and boredom, go to questions like, “Who am I now? Am I going to have a girlfriend again? What are my friends going to think? Am I going to be able to participate in daily life in the way I knew it?” Questions you might say of identity, like, “How do I conceive of myself in the world now?” My mind would go to what makes me a human being? It’s probably not feet. I don’t think that’s what makes a human being a human being. So, I found myself struggling to answer that question. And then, one of my dearest friends, a guy named Justin Berk, had devoted his undergraduate studies to art history. He and I would pick up conversations that were all about the philosophy of art. And we’d start turning our attention to why do human beings make art? What is this impulse? And that became very interesting to me. Like, maybe I could create a sense of self now like an artist creates something from raw material. I could take the raw material of my life, and what could I make of it now? So, on this sort of hunch, when I went back to Princeton the following fall — I had been studying Chinese language and was probably going to major in East Asian studies. And that stuff just fell out of my mind to make space for all these “what makes a human a human stuff.” And so, I changed my major to art history. Early on, I was in this classical sculpture class. And we’re looking at all these sculptures from antiquity and admiring them, these beautiful forms. And many of these old statues are missing an arm or a leg or both. We’re sitting here ogling and loving these statues and appreciating them. And I’m sitting there saying, “Hey, wait a second. That guy looks like me.” Like, wow. It was always — like, wait. And in a second, this lesson of context appeared for me. Like, I can choose how I see myself. I have some power here. And then, there was another moment in a modern architecture class and a lot of the effort in the late 19th century, early 20th century, to reveal buildings. Let the structure be its own aesthetic, rather than cover it up with applique and ornament. I had been covering my arm with socks, sort of ashamed of the skin graft. And I had these foam covers that they put over your prosthetic legs that make them look flesh-colored, and very unconvincing and kind of gross. And so, after realizing that my legs — maybe these were kind of cool inventions of themselves, not these crappy approximations of the things that I had lost. Maybe I should celebrate them for what they are and not pretend that they’re something else. That was huge for me. Then, all of a sudden, I’m looking at my life again, not as this lesser version of what might have been. And this is how I kind of clawed my way to inhabiting my body and even loving it from time to time.
LEVITT: That’s fantastic. Did people react the way you expected, hoped, feared, when you bared yourself physically?
MILLER: There were moments, especially back then 30 years ago — this was 1990. The Americans with Disabilities Act was just coming online. Disability was still very much this thing that we pitied. I remember some real visceral moments where my body was just upsetting to people. A massage therapist once was very upset that I didn’t warn her, for example. But when I started embracing my life, and when I started carrying myself in a little different way — I started wearing shorts again. I’d put these funny, patterned socks on my arm. What, of course, happened is the world started treating me a little differently. The way we hold ourselves ends up informing how people see us. And romantic interest started showing up a little differently. I remember when I was early days — I love driving. I love driving fast. I’m not a stranger to speeding tickets. But I would be pulled over by police, and when they would take one look at my body, and they’d say, “Okay, just keep on going. Keep the speed down.” They’d always let me off the ticket. Similarly, if I was on an airplane, the flight attendants would almost every time come, like, give me free alcohol and sometimes pull me up to first class. You know, it was lovely in a way, but it was all driven by pity. But when I started possessing myself a little differently, after a couple of years of this, the cops stopped letting me off. I rarely got the free booze and the upgrade to first class. Because in a way, I had re-entered the world of a normal human being.
LEVITT: People struggle with new situations, especially uncomfortable ones. I had a 1-year-old son who died. People do not know what to say to a father who’s just lost a 1-year-old son. I don’t know what you can say. But I remember one woman — she was the mother of a child who was in a playgroup with my son. And at his memorial, she came up to me and said, very sadly, “I can’t believe my daughter has to live with the fact that one of her friends died.” And I looked at her like — how about you try to live with your son dying — and people, obviously, I’m sure say the wrong things all the time, both around dying and probably around disability. Do you have advice around how to talk about hard topics?
MILLER: Steve, what was his name?
LEVITT: His name was Andrew.
MILLER: Yeah, well, first of all, thanks for sharing. I’ve been on the receiving end of all sorts of wayward comments. And it’s tricky. I think one of the realizations here is: there isn’t a perfect thing to say. And even if you land on something good to say to one person, that’s going to be exactly the thing that offends another person. The way we respond to death, loss of any kind is individual. And there are some patterns. And there are some truisms across people, across culture. But for the most part, what I think is really the most important — what is really actually healing — is authenticity. It’s less about the words you choose and more about the spirit behind the words. If someone says something to me very clunky, I can very easily see that as the vagaries of language, and the problems of being overwhelmed as a human being and being moved. Find some words that feel okay enough. And you might even own the clunkiness, say, “Gosh, I don’t know what to say. I just know I’m feeling a lot of things here for you. And is it all right if I give you a hug?” Or “My Lord. I can’t imagine but I’m here. I’m not running away.” Whether you say that out loud or you just convey that, I think that’s where so much of the healing spirit is. But I wonder, what would be your own answer, Steve, to that question?
LEVITT: Well, I’m definitely going to steal your answer because I think it’s exactly right. I never could have put my finger on it. As I think about when I’ve had loss, it is exactly that authenticity that’s worked. I think of the one example. It’s been 20-something years, but there was an economics professor who was a Mormon. And he wrote me a long letter about the Mormon faith and how they view death. And that was the most touching thing I received from anyone. It was heartfelt. It was real.
MILLER: Isn’t it beautiful — that vulnerability that goes with that authenticity and daring to not know and feel your way. And not worry about the polish and all the surface stuff. If you dare to make some peace with being vulnerable and you see the strength in vulnerability, rather than the weakness, which we usually connote with vulnerability, that should be accessible to us all the time. That is a native state underlying all of our accomplishments and all of the shellac that we put on things
LEVITT: You’ve co-authored a book, called A Beginner’s Guide to the End. And the best way I can summarize it is that it’s like What to Expect When You’re Expecting, except for dying instead of giving birth. I’m not sure whether you know that book, but roughly every first-time parent I know has three copies of it: one that they bought for themselves and two that were gifted to them by friends. And I suspect your book will be gifted much less frequently than What to Expect When You’re Expecting given people’s discomfort with death. But do you think that’s an accurate description of what you were trying to do with the book?
MILLER: Totally. That was very much an explicit comparison that we were going for, and that the publisher loved.
LEVITT: So, I’m really glad I read it while I’m healthy, because there are a handful of easy things I haven’t done but will do now to make life better for my family if I die suddenly. But maybe more fundamentally, I’ll keep it front and center on my bookshelf. So, when I or a loved one receives a difficult diagnosis, it will be right there. And it seems like it would make so much sense to find a way to get a copy of that book into the hands of people starting the process. But my guess is that it isn’t people’s first instinct to go searching on Amazon for how-to books when they’re faced with these life-changing diagnoses.
MILLER: Right on. And people tell us this: “We love the book. And God, I know two people who really, really need it, but I could never give it to them because they’ll think I’m trying to kill them or something. They’ll think I want them to die.” But I’m with you. The time to think about these things is earlier in life. Not just to forestall unnecessary difficulties around hospitalization and pulling plugs. The reason why we titled it that way is, in some ways, turn your attention to the fact that you’re mortal. Wrap your head around that one to the degree you can, or any of us can. And in some ways, that’s where the living starts. That’s when you appreciate time. That’s when you appreciate needing one another. That’s when you appreciate how important love is. And that’s when you start pondering what really matters to you. So, the sooner we do this, the more beautiful life is.
LEVITT: Yeah, I’ve spent more time thinking about my own death in the last few days, knowing we were going to talk, than I have in years. And I totally attest to what you just said — I had better moments with my two young toddler daughters yesterday than I’ve had in months. And I attribute it to the fact that I was reading your book. I was thinking about dying. I was thinking about what’s important.
MILLER: Another reason to start thinking about this sooner in life is you’re much less likely to stack up your regrets, when the accountant comes to call at the end of your life. It’s also worth noting that planning doesn’t guarantee you an easy death. When I’m standing at my horizon, and I’m finally there in a non-abstract way, I really don’t know how I’m going to react. And that’s fine. I just need to make a little space for that. And so, I always coach families, any patient I work with, or myself — when I’m making these plans and picturing peace at the end of life, to put a little asterisk there that this may go otherwise. I may need to freak out. And part of the work here is to not ostracize hard emotions, tears, sorrow, anger — part of the deal, too.
Authenticity. It’s something that comes up over and over on this podcast in so many different places. B.J. Miller’s book about preparing for death is called A Beginner’s Guide to the End. His company is called Mettle Health, M-E-T-T-L-E Health. Thanks for listening and see you next week.
People I (Mostly) Admire is part of the Freakonomics Radio Network, which also includes Freakonomics Radio, No Stupid Questions, and Freakonomics M.D. All our shows are produced by Stitcher and Renbud Radio. Morgan Levey is our producer and Jasmin Klinger is our engineer. We had help on this episode from Alina Kulman. Our staff also includes Alison Craiglow, Greg Rippin, Gabriel Roth, Rebecca Lee Douglas, Zack Lapinski, Julie Kanfer, Eleanor Osborne, Mary Diduch, Ryan Kelley, Emma Tyrrell, Lyric Bowditch, Jacob Clemente, and Stephen Dubner. Our theme music was composed by Luis Guerra. To listen ad-free, subscribe to Stitcher Premium. We can be reached at email@example.com, that’s P-I-M-A@freakonomics.com. Thanks for listening.
MILLER: I appreciate your patience. My tongue is getting going here, Steve.
- B.J. Miller, palliative-care physician and President at Mettle Health.
- A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, by B.J. Miller and Shoshana Berger (2019).
- “After A Freak Accident, A Doctor Finds Insight Into ‘Living Life And Facing Death’,” by Fresh Air (NPR, 2019).
- “The Final Year: Visualizing End Of Life,” by Arcadia (2016).
- “Dying In A Hospital Means More Procedures, Tests And Costs,” by Alison Kodjak (NPR, 2016).
- “What Really Matters at the End of Life,” by B.J. Miller (TED, 2015).
- “The Flexner Report ― 100 Years Later,” by Thomas P. Duffy (Yale Journal of Biology and Medicine, 2011).
- “My Near Death Panel Experience,” by Earl Blumenauer (The New York Times, 2009).
- “Palliative Care Methods for Controlling Pain,” (Hopkins Medicine).