When BJ Miller was a sophomore at Princeton University, he climbed atop a commuter train that had been parked for the night. What began as a lark took a tragic turn when 11,000 volts of electricity suddenly surged through his body.
"There was a big explosion, a big flash of light, and I was thrown ... quite some distance," Miller says. "My body was literally smoking."
Miller survived that 1990 accident but lost both legs below the knee and half of one arm. Coming close to death and dealing with pain and disability inspired him to go into medicine and the field of disability rights.
As a palliative care physician at the University of California San Francisco's Cancer Center, Miller draws on his own experiences to help people with their physical, emotional and spiritual pain at the end of their lives. His new book, with co-author Shoshana Berger, is A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death.
Miller says it's hard for him to regret the accident that changed his life.
"So much has flowed from it," he says. "If I'm honest, there's a little bit of pride. ... [What] I'm a little proud of is the decision to work with this experience over time, to dig into it, to mine it, to find a creative energy in it."
On how growing up with his mother, who had polio, influenced him
To grow up around disability from a young age, to have that carved into your worldview was, you can imagine, hugely helpful for me as a 19-year-old kid with ostensibly everything going for him. ... To know in your bones that you're on borrowed time with being "able-bodied" — I knew that. I didn't have to learn that, and that was a huge advantage. ...
In my early childhood, she used crutches and a brace and was extremely physically capable. And then, over time, from the early '80s on, it's just been a very slow decline to the point now where she really requires an electric wheelchair, has a little bit of ability to stand, but not for very long, etc. ...
People think you're Jesus because you've gone through something special. They treat you like you've got special knowledge, or they treat you a little bit like Frankenstein. Of course, those two responses are related. Neither of them is accurate. But that's the kind of vibe you can get — a lot of us who have disabilities know very well. And I had seen that. I knew how to read that, thanks to my mother.
On deciding to pursue palliative medicine
I started doing a little work [in] arts advocacy and disability rights. But basically ... thanks to the disability rights movement, I realized that disability is not something to be ashamed of. It's not something to overcome, to put behind you — it's something to work with. It doesn't go away. I can't overcome this; it's my daily experience. So instead the compulsion was to work with it — in a professional way that I could make a living. And medicine lit up, theoretically, as a way where I could use these experiences and pay them forward in some way or draw from them — not overcome them and put them behind me.
On palliative care and the treatment of suffering
That's why I think hospice and palliative medicine is so interesting. You don't just treat pain. You treat suffering. Suffering is a multiheaded beast. ... Basically palliative care is the treatment of suffering, versus the rest of medicine as the treatment of disease. ...
So what is suffering? Well, suffering, there's a lot of different ways to define it. Cicely Saunders, the grandmother of hospice work, she called it "total pain." That [it has] a physical component, a psychological and emotional component, a spiritual component. It's a multiheaded entity. One might say it affects how you see yourself. It affects your identity. I've come to understand suffering as a wedge — a gap that opens up in you. The gap between the world you have and the world you want. So, it gets at your desire, it gets at your longing, it gets at what you're lacking.
On finding the balance between life and death, and joy and sorrow
Coming out of the back side of the experience of my own injuries, my own brush with death, etc., I came out of there eventually holding life much more loosely. So it didn't teach me to cling to life with my fingernails, that that was the way through. It taught me some adult trick of simultaneously holding on to opposing emotions. ...
Grief does this. But anyone who's dealt with pain — chronic pain — when the clouds part even for a moment and you have the absence of pain, it's a stunning feeling. I remember feeling that I really wanted to stay close to that interface between joy and sorrow, between pain and pleasure, between life and death. It felt like such a rich, rich place that I had been forced into. I had to hang out there for a while, but I became a little enamored of it, because from there I could just as easily get to sorrow as I could get to joy. And that to me has felt like a kind of a dexterity or an agility, something very good. ... So death is close by, pain is close by — so is the rest of life. So is the good stuff. That zone, it helps me imagine what my patients are going through, being close to death.
On how he helps his patients with both their fear of dying and their fear of being dead
Fear helps point to the things that you care about, the things you love, the things you're afraid to lose. Fear is a big important subject and really requires and demands looking at. The sooner we do, the better, because oftentimes it's not so darn scary. ... It's helpful when patients will confess some fear to me. ... People say, "Actually I'm afraid of the pain I imagine is going to happen during the dying process." So the fear of dying, the fear of the dying process. That's an important distinction, because any hospice and palliative medicine team can do a lot to quell the pain and the sorrow that happens during the dying process. We have medications. We have ways of being with each other. We have ways of positioning your body. There's all sorts of things to do, so suffering is not necessarily part of the dying process. And there's a lot of reassurance. ... We understand that process pretty well, and there's a lot we can do. So that's an important distinction. That's pretty concrete. That's knowable.
Now, some of my patients will say, "That's one thing. But I'm actually afraid of being dead. I'm afraid of being in the ground. I'm afraid of what comes next or whatever else." Then my response, of course, is, "Well, gosh, I don't know what that's like either. But let's think about it. Let's talk about it." And when we push on that one, I think most of us can get to a place where we realize that we're not just our bodies — and our bodies, once they're dead, aren't likely to be feeling anything.
But when you push on that one, you can open up [about] what is known as [the] modern acronym of FOMO — fear of missing out. That's very often at the heart of people's fear of being dead — like all that they're going to miss. And this idea that the world is going to continue on without them, all the things they're not going to get to see, etc. But if you go there, then what has that done? That has pointed us very squarely to all the things we love and care about. And then that becomes a nice compass for our way forward, how we're going to live until we die. The fear there, the things we are afraid to miss, are the things we really should uptick in terms of our attention now.
Sam Briger and Joel Wolfram produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the Web.
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. My guest BJ Miller is a hospice and palliative care doctor who got into this work because he came close to death when he was a sophomore at Princeton University. It was late one night. He was out with friends, and as they crossed the railroad track, he climbed on top of a two-car commuter train parked for the night and was immediately electrocuted by 11,000 volts. The damage resulted in the loss of both legs below the knees and half of an arm.
Miller is now a palliative care physician at the University of California, San Francisco Cancer Center. He was the executive director of San Francisco's Zen Hospice Project from 2011 to 2016. He's the co-author, with Shoshana Berger, of the new book "A Beginner's Guide To The End: Practical Advice For Living Life And Facing Death," and he started a new project, the Center for Dying and Living. Now in its early stage, it's a web site designed for people to share their own stories related to living with illness, disability and loss or caring for those who are.
BJ Miller, welcome to FRESH AIR. If you don't mind, let's start with the experience that brought you close to death. You and your friends had some drinks when you were in college. It was, like, 4 a.m., and you climbed on top of a two-car shuttle train in Princeton. Do you remember what you were thinking when you climbed on the train?
BJ MILLER: You know, I don't. I don't really have many memories of the night itself - just sort of spotty ones. But it was very - I can very easily imagine what I was thinking. And having talked to my buddies who - you know, over the years, we've kind of patched it all together. And I think a basic thing we were thinking was, oh, here's a jungle gym just sitting here. Let's climb it like you'd climb a tree or something like that. I don't - I'm quite certain we did not think we were doing anything spectacularly dangerous.
GROSS: Did your friends who were with you describe to you later what they witnessed because you have no memory of it?
MILLER: Once I was through much of the trauma, it just became sort of - the whole thing just became interesting to me. And so yeah - talking and piecing it together with the nurses who were in the burn unit when I arrived or the E.D. when I arrived, but most importantly with my friends that night, Pete and Jonathan in particular.
So I just happened to be the first one up, and they didn't see anything. They just - there was this big explosion, a big flash of light. And I was thrown - I don't know how many feet, but quite some distance - happened to land on top of the train still on my head. Apparently, I bumped my head, so it was bleeding. And so Pete scrambled up on top of the train behind me to see what had happened - by the way, a great risk to himself. I mean, obviously, something was amiss up on top of the train, and there was no telling whether I was still alive or what was going on. But Pete kept coming, and meanwhile, Jonathan ran to the nearest telephone to dial 911.
Anyway, so Pete got up there and found me lying still and bleeding from the head, and that seemed to be the big injury - was, you know - it was - my head was bleeding like stink. But it wasn't - but then he noticed I was smoking, too. I mean, my body was literally smoking, steam coming out - off of me. And Pete ran over to me and sort of - I don't know exactly, but shook me.
And I came to, but I came to in a very violent way, as happens with electrical injuries because - it gets a little grotesque, but the energy, the heat - the electricity enters your body. It is - think of it as something running around inside of you. And so you burn from the inside out, and so with all this heat trapped in you, you are on fire inside. And the huge adrenaline surge is apparently - I mean, you get violent. So I am swinging. I'm punching Pete. I am swinging wildly, flailing around. And Pete's trying to hold me down so I don't roll off the train and make everything worse.
And thank God. I mean, he held me down. Jonathan got the ambulance. They came. One of the cops from Princeton, he dared to get up there with Pete. And then the paramedics handed them the stretcher. They put me in the stretcher, strapped me in and then handed me down, and off I went into the ER.
GROSS: And how long was your life in jeopardy after that?
MILLER: The accident happened November 27, and I was in the burn unit until, oh, I think mid-February. And so the fact that you're in the burn unit, which is a very specialized place, not to be confused with anything in the natural world - you know, the fact that you're in there for however many months - two and a half months or so - you're touch-and-go by virtue of you being in the burn unit. But I think from talking to my surgeons and blah, blah, blah, I think we've pieced together that - and talking to my parents, the sort of news that they were getting along the way - I think the first month or so was sort of like - you know, give him a kiss goodnight. Who knows where he'll be in the morning? Essentially, you know - and I could have this a little bit wrong, but it was a while. It was many, many weeks and well into me being conscious.
So I didn't - whether I knew that, I don't know, but I never really felt - interestingly or not, I didn't ever really think I was going to die. It was really only in retrospect hearing a bunch of this stuff where I said, wow. I - you know, then the story started taking light in my mind. But while it was happening, no. It was just a scary, painful thing. But I didn't feel death's presence.
GROSS: So the story that you've told - you've probably told that many times over the years. What do you feel when you tell it now? What is the experience of telling it years after the fact, having told it so many times?
MILLER: Well, if you could see me now, Terry, you'd see a smile on my face, I mean, in part because it's just - I feel like I'm describing, like, an exciting movie. And then you realize, oh, you're the character in that movie. And then, you know, if I'm honest, there's a little bit of pride. Like, hey; I went through something. I survived something extremely intense and blah, blah, blah. I mean, there's - so there's pride in retrospect.
There's, you know, tons - and this is actually one of the things that's taken years to really come to terms with - is how grateful I am to Pete, to Jonathan, to Tommy, to the nurses, to my - I mean, on and on. We can talk about that. Take - it's taken me years to let the full load of gratitude in. And that's been an interesting journey because that required me realizing how dependent on others I had become, and I - and that was hard information to let in.
GROSS: So for - you have, you know, prosthetics now, so you can walk. You bicycle. But for a while, you were in a wheelchair and then a golf cart.
GROSS: Now, your mother had polio.
GROSS: I don't know she's still alive or not.
MILLER: She is.
GROSS: Yeah. So I know throughout a lot of your life, and maybe still, she was using a wheelchair. What was your attitude toward wheelchairs, having seen your mother using one for so many years?
MILLER: So this is a really key piece of the story for me. To have a mother with whom I'm very close, to grow up around disability from a young age, to have that carved into your sort of worldview, was - and you can imagine - hugely helpful for me. As a 19-year-old kid with ostensibly everything going for him - you know, you're at Princeton, blah, blah, blah - you know, to know in your bones that you're on borrowed time with being, quote-unquote, "able-bodied" - I mean, I knew that. I didn't have to learn that. And that was a huge advantage. My mother, I just - and watching her, in such beauty and grace, deal with her own disability, you know? So she had polio when she was 18 months. And then she had - when she hit about 40, as happens, she got what's called post-polio syndrome and then became a progressive disability.
And, you know, in my early childhood, she used crutches and a brace and was extremely physically capable. And then over time, from the early '80s on, it's just been a very slow decline to the point now where she really requires - she requires an electric wheelchair - has a little ability to stand but not for very long, et cetera.
So being around - being close to a person - having that as a role model, having my mother as a role model, watching her deal with it, watching my father love her, watching how the world treated her in this weird - and I got a lot of this, too, in the early '90s. You kind of - either people think you're Jesus because you've seen some - you've gone through something special, they treat you like this sort of, you know - I don't know, like you've got special knowledge, or they treat you a little bit like Frankenstein.
Of course, those two responses are related; neither of them is accurate. But that's the kind of vibe you can - that a lot of us who have disabilities know very well. And I had seen that. I knew how to read that thanks to my mother, et cetera. So I can't make enough of how important that background was for me.
GROSS: If you're just joining us, my guest is Dr. BJ Miller. He is a hospice and palliative care doctor at the University of California, San Francisco Cancer Center. And he's co-author of the new book "A Beginner's Guide To The End: Practical Advice For Living Life And Facing Death." We'll be right back after we take a short break.
This is FRESH AIR.
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GROSS: This is FRESH AIR. And if you're just joining us, my guest is Dr. BJ Miller. He's a hospice and palliative care doctor at the University of California, San Francisco Cancer Center and co-author with Shoshana Berger of the new book "A Beginner's Guide To The End: Practical Advice For Living Life And Facing Death."
How did you decide that what you were going to do was become a hospice and palliative care doctor?
MILLER: I started doing a little work in arts advocacy and disability rights. But basically, I realized - thanks to the disability rights movement, I realized that, you know, disability is not something to be ashamed of. It's not something to overcome, to put behind you. It's something to work with. And it doesn't go away. I can't overcome this. It's my daily experience. So instead, find ways to - the compulsion was to work with it and in a way that - in a professional way that I could make a living.
And medicine lit up as a - theoretically, as a way where I could use these experiences and pay them forward in some way or draw from them not overcome them and put them behind me. And so I sort of said, well, I don't - nothing else I really wanted to do. So I said, oh, medicine makes good sense. Let's give it a try. And so I did.
And the deal with myself was, I'll either not be able to do it - and I don't - at this point, I knew enough about coming close to death to realize I didn't want to just sacrifice my life. It was too precious. So I said, if I don't like it, I'll stop. And if it's just too hard, I'll stop. But so down the road I went. And eventually, I landed in a palliative care elective.
And at that point, actually, I was about to get out of medicine. This was deep in senior year of med school. My sister had just died. There was a lot going on. We can talk about it. But bottom line is I was going to get out of medicine. I was very much disillusioned with it, falling out of love with the idea. But then I stumbled onto a palliative care elective with the guys at the Medical College of Wisconsin, where I was doing my internship. And everything just lit up in a day.
GROSS: You mentioned that your sister had died at about the time you discovered palliative medicine.
GROSS: She took her life. It was suicide. And I - you know, when I read that I was thinking, you came so close to dying because of this horrible accident, which you were electrocuted. How did you handle knowing that she took her life, that she ended her life?
MILLER: Yeah. It's a really - I'm still working on that one. It's still - but I think it has something to do with coming out of the backside of the experience of my own injuries, my own brush with death, et cetera, I didn't come out - I came out of there, eventually, holding life much more loosely. So it didn't teach me to cling to life with my fingernails, that that was the way through. It taught me to sort of - some adult trick of simultaneously holding onto opposing emotions.
And one of the things - you know, grief does this. But, you know, as anyone who's dealt with pain, chronic pain, you know, when the clouds part even for a moment and you have the absence of pain, there's - it's a stunning feeling. It's a - and I remember feeling that I really wanted to stay close to that interface between joy and sorrow, between pain and pleasure, between life and death. It felt like such a rich, rich place that I had been forced into, that I - you know, I had to hang out there for a while.
But I became a little enamored with it because from there, I could just as easily get to sorrow as I could get to joy. And that, to me, has felt like a kind of a dexterity or an agility - something very good. So death is close by. Pain is close by; so is the rest of life, so is the good stuff. That zone - I can imagine - it helps me imagine what my patients are going through being close to death. It helps me understand what my sister was feeling, perhaps. It just - I guess my long-winded answer is it's not as opposing as it might appear. My own fighting to live versus my own sister's, in a way, fighting to die - those seem to be actually pretty darn closely related to me.
GROSS: Did she have a mental illness?
MILLER: She was posthumously diagnosed with one. I mean, Lisa was so friggin' (ph) smart. That was one of her problems. I mean, she was just so - she could get anyone thinking anything. And she was - she ran hot like a furnace - hot and cold. And, you know, after she died, my parents went through her - they made a controversial decision to look at her journals with a psychologist to try to make sense of what had happened. And through that, they hit very plainly on the diagnosis of bipolar depression, manic depression, however you want to call it. And it was odd. I mean, I was in med school trying - I mean, it's so - in her case, it's outrageously plain. It's so incredibly obvious, but somehow, we all missed it, including her therapist of a gazillion years. She was just too clever.
GROSS: So getting back to your pain - your physical pain - I'm sure you were on a lot of opioids in the recovery period. What did you learn as a palliative care doctor from your own experiences dealing with severe pain and dealing with the opioids that helped you survive the pain?
MILLER: How powerful pain relief is, how important it is, how powerful it is and how much caution it requires. You know, there's all of that, but I think the more interesting thing - and much more relevant to my work now and to the work of hospice and palliative medicine just period - is that, you know, pain is very interesting. It's not - you know, when I was coming out, they - this phantom limb pain which I had, that was considered, like, a psychiatric phenomenon. They've since learned, but it's just a case in point of how, again, just fascinating pain is and how it affects your identity, how you see yourself, your mood, what you think of God. I mean, it is a thorough phenomenon, and that's where it gets very interesting, and that's why I think hospice and palliative medicine is so interesting. You don't just treat pain. You treat suffering. Suffering is a multi-headed beast.
GROSS: Oh, wait. I want to stop you there. What do you see as the difference between pain and suffering? Because I think that's an interesting distinction.
MILLER: Well, to back up for a second just for your listeners - so palliative care, it's - basically, palliative care is the treatment of suffering versus the rest of medicine - sort of the treatment of disease. In palliative care, we treat suffering, and hospice is that sort of treatment of suffering specific to the end of life. But palliative care writ large is just the treatment of suffering any time along the way of a serious illness. You don't have to be dying anytime soon to get it, OK? So that - just to get clear what that palliative care is.
Now, OK, so what is suffering? Well, suffering - there's a lot of different ways to define it. You know, Cicely Saunders, sort of the grandmother of hospice work, she called it total pain - that it had a physical component, a psychological and emotional component, a spiritual component. It's a multi-headed entity. It affects - one might say it affects how you see yourself. It affects your identity. I've come to understand suffering as this - like, as a wedge, something that open - a gap that opens up in you, the gap between the world you have and the world you want. So it gets at your desire. It gets at your longing. It gets at what you're lacking. It's just - so you might as well see a priest as you would a doctor to treat your suffering.
GROSS: So one of the things you learned from your pain was that you could treat the pain, but there's also an emotional and spiritual element, too - components of suffering that need to be addressed.
MILLER: That's right. That - and yes, that those - that it was not simply just trying to deaden the stimulus, and that suffering - by leaning into it, by working with it, by being changed by it, by learning from it - it's a very humbling experience. It makes you - it helps you - makes you see things a little differently.
And I guess there's a humility in it, but there's also this sort of way to - so if you open it up like this, the ways to treat it become much more interesting. Like, studying art was a way to treat suffering, you know? Becoming a physician was a way to treat suffering. These were ways to make meaning. And as we know, making meaning from your experience is a real salve. I mean, that is itself a treatment. So it just - yeah. It just explodes the subject and makes it much more dynamic but also - very, very importantly - much more universal.
GROSS: My guest is BJ Miller, a hospice and palliative care doctor at the University of California San Francisco Cancer Center. He's the co-author of the new book "A Beginner's Guide To The End." After a short break, we'll talk about why he asks terminally ill patients if what they're afraid of is dying or being dead, and book critic Maureen Corrigan will tell us what's on her list of the best books of the year. I'm Terry Gross, and this is FRESH AIR.
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GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with BJ Miller, a hospice and palliative care doctor at the University of California, San Francisco Cancer Center. He's the former executive director of the Zen Hospice Project in San Francisco. He got into this work because he came close to dying when he was 19, after he climbed on top of a small shuttle train parked for the night and got electrocuted. He lost both legs below the knees and half an arm. He's written a new book with Shoshana Berger called "A Beginner's Guide To The End: Practical Advice For Living Life And Facing Death." And he started a new project, the Center For Dying & Living. Currently, it's a website designed for people to share their own stories related to living with illness, disability and loss or caring for those who are.
Let's get back to suffering, so...
GROSS: Since, as you've said, like, suffering has, like, not only a physical pain but an emotional and spiritual aspect to it. As you pointed out, you know, some drugs can speak to some of that emotional and spiritual suffering. Even if it might be an artificial dialogue, a drug-induced dialogue, it still...
GROSS: ...Speaks to it. So I'm interested in hearing your thoughts about drugs at the end of life, like, you know, if you have a terminal illness, especially if you have a very limited time left; not only opioids but also there's been experiments with, like, LSD and with MDMA - especially for people who are afraid of death - with the idea that these drugs can sometimes induce a state of transcendence that will make you look at your life and maybe look at death a little bit differently. I don't know how much you've experienced. I know you've had a lot experience with treating people with opioids. I'm not sure if you've participated in any of the other experiments or not. But do you have any direct experience in dealing with people near death who are using MDMA or psilocybin or LSD?
MILLER: I do, both aboveboard as research subjects and people who are doing it informally.
GROSS: So what have you actually witnessed?
MILLER: I have witnessed - I've not been around them persay having those experiences. I have been around to see the effects of those experiences. And what you meet afterwards is not someone who - you know, they're still very much themselves. They are just - there's a certain peace and even a sort of playfulness, like it's almost like you can learn how to fall apart, like you can learn how to fall. I've known this experience. You can - there's something there to harness. You can kind of take yourself down to the studs. And these - so when I've talked to folks before and after these experiences, you know, at once is - the person goes from anxious to at peace, from seeing themselves as totally isolated to feeling themselves totally connected. And, again, these are not thrill-seekers. These are folks who are - had serious issues and come out with one experience feeling a heck of a lot better.
GROSS: And are these people who've had guided experiences as opposed to just, like, taking street drugs on their own?
MILLER: Yeah. Everyone I've known who's done this has taken it very seriously. Some have been test subjects in a research study, and some have followed protocols more casually, informally with friends or others who are doing this kind of work on the side or underground. So, yeah.
GROSS: But doing it in a safe, guided setting.
MILLER: But it's a hugely important point, Terry. Right. These same drugs can - are very powerful and can lead people astray if it's not - setting is very important. How - the intentions you go into this experience with a very important. The integration - how you come out of this experience and integrate it back into your daily life. This is all - these are really important pieces of the puzzle. You're not going to get that at a rock concert by the - you know, in this much riskier affair.
GROSS: So earlier, we were talking about how before you got into this field, when you were a student at Princeton, you were electrocuted by - after you climbed on top of a train - a train that was not in use but, still, you got electrocuted and lost your legs below the knees and half of one arm. And then you got into palliative care and hospice work. I'm wondering now when you introduce yourself to patients for the first time, if they don't already know of you - because I'm sure, in many situations, your reputation precedes you. But if they don't already know of you, and earlier in your career when they didn't know of you, did you try to let them know right away that you'd kind of almost been there yourself? Did you show them your prosthetics? Did you tell them your story to give them a sense of, like, I get it? - I mean, I don't know your specifics yet, but I understand pain. And I understand what it's like to come close to death, although that's different from having a terminal illness.
MILLER: Mmm hmm. You know, this is where I'm so - I've become - I've gotten to a place from much - I'm very grateful to have an obvious disability. You know, early on, if I could have passed, if I could have hidden it, I certainly would have. But part of my own therapy was the fact that I couldn't hide it. It made me deal with it. And so an answer to your question - you know, I - because my legs are very obvious, and I don't wear these covers on the legs or cosmetic covers, I mean, you look at them and there's no confusing them with natural legs.
GROSS: You have those, like, metal prosthetics.
MILLER: Yeah. Yeah, they're carbon fiber blades. You know, they're kind of futuristic-looking. But like I say, not to be confused with (laughter) natural...
GROSS: They really look like they get the job done. I've seen people, like, mountain climbing with them. And...
MILLER: Oh, yeah.
GROSS: ...Doing all kinds of things.
MILLER: They are amazing. This is where, you know, as an injury - in contrast to my mother's - right? - who has a progressive decline; it's only going to get worse. Mine, thanks to the technology, you can expect to actually get better and better. They're different. But anyway, the point here is that I - you take one look at me, and there's no - you know something's gone. Just my silhouette alone, that - so very often with patients, I don't - we don't end up talking about my story much because the - what they need is obvious enough. And what they seem to need is empathy, right? You know, you - they seem to need someone who understands enough what it's like to be in the bed, to be dependent on others, to go through this crazy healthcare system, et cetera. And that's just obvious in two seconds of meeting. So very often, we don't end up having to talk about it. I'm certainly open to talking about it, but it often doesn't - it doesn't seem necessary.
GROSS: Let's take a short break here, and then we'll talk some more. If you're just joining us, my guest is Dr. BJ Miller. He's a hospice and palliative care doctor at the University of California, San Francisco Cancer Center. And now he's the co-author of the new book "A Beginner's Guide To The End: Practical Advice For Living Life And Facing Death." We'll be right back. This is FRESH AIR.
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GROSS: This is FRESH AIR. And if you're just joining us, my guest is Dr. BJ Miller. He's a hospice and palliative care doctor at the University of California, San Francisco Cancer Center and co-author of the new book "A Beginner's Guide To The End: Practical Advice For Living Life And Facing Death."
I know when you're working with people who are terminally ill and are nearing death, you ask them about their fear. And you differentiate between the fear of dying and the fear of being dead.
MILLER: Mmm hmm.
GROSS: And you ask them which, if either, they're afraid of. Can you talk about the difference between the two and why you frame the question that way?
MILLER: Yeah. Well, so fear is such a bear. And it's also such a normal thing. I think one thing about the fear of death - sort of existential fear and dread and - you know, it's actually - it's a fear to look at not to run away from. It's a particular fear. And why I say that is it points you - fear helps point you to things that you care about, the things you love, the things you're afraid to lose. Anyway, fear is a big important subject and really requires and demands looking at. The sooner we do, the better because oftentimes, it's not so darn scary.
So to your question, it's helpful, when patients will confess some fear to me, to really look at it. Get down and roll around with it. So - and very often, it comes down to that when pushed, people say, yeah. Yeah, actually, I'm afraid of the pain I imagine is going to happen during the dying process, so the fear of dying - the fear of the dying process. Now, that's an important distinction because any hospice and palliative medicine team can do a lot to quell the pain and the sorrow that happens during the dying process. There - we have medications. We have ways of being with each other. We have ways of positioning your body. There's all sorts of things to do, so suffering is not necessarily part of the dying process. And there's a lot of reassurance. Like, we know - we understand that process pretty well, and there's a lot we can do. So that's an important distinction. That's pretty concrete. That's knowable.
Now, some of my patients will say, no. Yeah, that's one thing. But now I'm actually afraid of being dead. I'm afraid of being in the ground. I'm afraid of what comes next or whatever else. And then we get to say - and then I get - and then that - my response, of course, is well, gosh. I don't know what that's like, either. But let's think about it. Let's talk about it. And when we push on that one, I think most of us can get to a place where we realize that we're not just our bodies. And our bodies, once they're dead, aren't likely to be feeling anything. But when you push on that one, you can open up, you know, what ends up often being, with this modern acronym of FOMO - you know, fear of missing out. That's very often at the heart of people's fear of being dead - like all that they're going to miss, and this idea that the world's going to continue on without them, all the things they're not going to get to see, et cetera. But if you go there, Terry, well then what has that done? That's just pointed us very squarely to all the things we love and care about. And then that becomes a nice compass for our way forward - how we're going to live until we die. And so the fear's there, the things that we're going to - afraid to miss are the things that really we should uptick in terms of our attention now. So that's - these are a couple ways you get to kind of work with this fear and find a way through.
GROSS: You must have seen so many people go through the dying process over the years you've been a palliative care and hospice doctor. What does your experience tell you about whether dying is an inherently frightening experience?
MILLER: I think - well, from my experience, dying is not an inherently frightening experience. It's - I think for us neurotic animal humans, it's more terrifying in anticipation. You know, with enough support, most of the people that I've been around who are actually doing the dying, they get to a place where they're, you know, ready to go. That doesn't necessarily mean it's fun and light. But it doesn't mean it's necessarily all miserable either. In some ways, it's a great relief. I think, like so many things, that the anticipation of it can be way worse than being in it. And in this way, it's also harder on the family, harder on those who have to stay behind. And these aren't absolute rules, but that's basically a gist of what I've seen.
GROSS: Having seen as many deaths as you have, do you ever risk feeling, like, kind of numb to it? You know, like you have a new patient who's facing death for the first time. You've ushered so many people through the process and cared for them during the process. Do you ever fear you're going to feel like, yeah, been there, done that. You're somebody else who's going to die soon. Do you know what I'm saying?
MILLER: I do.
MILLER: I do. I think this is one of the occupational - we mentioned one occupational hazard earlier, which is that so much of this work is empathy-driven. I mean, suffering - this is all very subjective stuff. But if you're empathic and if you're around people who are suffering a lot, you're going to feel their suffering one way or another. So that's a big occupational hazard is that you can just get laden with pain that's not just your own. And the other occupational hazard is that you get inured to it - you know, that you - yeah, that you've seduced yourself, accidentally or otherwise, into thinking, oh, I've seen it. I know what death is like. I've been there. I've been around it. And even in my own personal experiences, as close as I've gotten to my own death and those around me, it's really - I'm very disciplined about maintaining a little coefficient, a little corrective variable that says, yeah, I've seen these things. I've seen patterns. But I reserve the right, when it is my time to go, when I'm actually dying - not this partial death stuff that I've had - I reserve the right to freak out.
MILLER: You know? I mean, right? Part of this is mystery. And we - and here I am - I just wrote a book with Shoshana. Shoshana and I just wrote a book on this whole subject - right? - And we - us implying we have some expertise. But part of that expertise is knowing the limits of what we know. And there's all sorts of things I don't know. That's why I love my agnosticism. I love - I love the mystery.
But to your question, no, I think when the - the real hazard - if I find myself getting a little numb and a little, you know, yawning at the idea of death, I shake myself. And I remember - I remind myself there's all sorts of stuff I don't know, I don't see. And so far, that's been enough - just little reminders.
GROSS: So your new book is a kind of guidebook for people to help them prepare for death and get their things in order so that their loved ones don't inherit a mess - you know, either, like, a messy home or a messy will or no will at all or no instructions about what to do with the body or any of that. And one of the things that you recommend in the book is a death file - a kind of file with, like, all of the relevant records and the wills and the DNRs or, you know, whatever is relevant to your loved ones to see after you're gone. And at what point do you recommend getting that together? And do you already have one?
MILLER: Mmm - yeah, the when-I-die file. Shoshana and I were talking early on about this sort of idea of how to kind of collect all this...
GROSS: This is your co-author.
MILLER: ...Gear. Yeah, Shoshana's my co-author. Hi, Shoshana. We - (laughter) initially, she caught herself saying - calling it that if-I-die file. We all - we had to gently correct each other that - no, no - when-I-die file - so it's the when-I-die file is the way we call it. But whatever. It could be a shoe box. It could be - but just make it easy for the people who survive you to find the stuff - find your passwords to all your online junk so that they can close your, you know, Facebook account and they can turn off your cable and all this other stuff. I mean, honestly, people have to go through months and - without that stuff, it takes years to wind down the physical residue of a life.
So yeah, make a file. Put in it, like, your advanced directive - you know, your will, your - you know, instructions for how you'd want to be buried. You can be very detailed. Do you want a certain music played at your funeral? Do you want certain people there? Do you want certain people not there? - all that kind of stuff. You know, and it can be fun, too. Like, a friend of ours, Ira Byock, talked about how his mother left him a bunch of recipes and what a beautiful legacy that was. You can leave notes to family members.
You know, one of the things that's been beautiful I've watched people do is their sort of legacy work that goes on. My friend Frish Brandt here in San Francisco, she writes letters with folks. So she'll sit with folks who are dying and write letters to unborn grandchildren or kids before - you know, on their graduation or hypothetical wedding days, you know, that kind of thing - I mean, gorgeous. Or you can record it and put it in this box. This is a way to actually kind of help you wrap your head around your own mortality, get creative with it to the degree that you want to. And also, as importantly - and perhaps most importantly - it makes it so, so much easier for your heirs to know what you want, to know what's important to you and to enter their grief filled with sort of more of a beautiful, cleaner sorrow than a guilt-ridden or task-laden affair.
GROSS: BJ Miller, it's really been great to talk with you. Thank you very much.
MILLER: Terry, it has been such a joy. Thank you.
GROSS: BJ Miller is the co-author of the new book "A Beginner's Guide To The End." He's a hospice and palliative care doctor at the University of California, San Francisco Cancer Center.
After we take a short break, book critic Maureen Corrigan will go through her list of the best books of the year. This is FRESH AIR.
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