GUY RAZ, HOST:
Do you fear death?
BJ MILLER: You know, sitting here, I'd say no. I don't really fear death. A bigger fear, I would say, is that I not take full advantage of the time that I have.
RAZ: This is Dr. BJ Miller.
MILLER: I am a palliative care physician. I practice at UCSF. But my main job is as executive director of the Zen Hospice Project here in San Francisco.
RAZ: When I hear that word, hospice, I'd be lying to you if I didn't say I get, like, a flutter. It's where you go to die. I mean, that's it.
MILLER: You know, I think you're right. These are loaded, loaded words. But when you start wrapping your head around mortality and the fact that we are finite, you know, that we die, among other things, you kind of realize, well, this life I have is an amazing phenomenon. I should take it seriously or, my gosh, everyone I know, everyone I've even heated dies. Maybe there's a - this could be a force of unity and connection. So it's complicated, and I don't mean to talk you out of being a little bit frightened by the word hospice. That's very real. But there is a field - there are people waiting trained to accompany you once you walk through those doors.
RAZ: BJ thinks that we could apply the hospice philosophy to elements of our medical system, especially our hospitals. Here's BJ on the TED stage.
(SOUNDBITE OF TED TALK)
MILLER: Now, the American healthcare system has more than its fair share of dysfunction. And believe me, most everyone who goes into healthcare really means well. But healthcare was designed with diseases not people at its center. And nowhere are the effects of bad design more heartbreaking or the opportunity for good design more compelling than at the end of life where things are so distilled and concentrated. My purpose today is to reach out and invite design thinking into this big conversation. We have a monumental opportunity in front of us to rethink and redesign how it is we die.
RAZ: BJ's ideas about how we design for death and dying, as you might expect, come from his experiences as a doctor and from working with his hospice patients. But those ideas also come from his own life and something he went through.
MILLER: Having come close to death myself - sure, that was formative.
RAZ: Can you tell me what happened?
MILLER: Yeah, so I was 19 - sophomore year of college - very fortunate to be at Princeton University. My friends and I, we had just gotten back from Thanksgiving break. It was a Monday night. I remember I had to go print off a paper I was writing. Then we decided to go hang out and, you know, just chill out for a little while - walk around, cruise around. It wasn't a crazy night. And there's a commuter train that used to run right onto campus. And, you know, it's just sitting there. And it wasn't running. It wasn't an active train. It was just sitting there, and we decided to climb it like you would like a jungle gym or a tree. We really - we'd done some dumb things, believe me. But this we didn't think was actually that dumb. So we just kind of scurried up. I just happened to be the first one up. And I had a metal watch on. And when I stood up - the power lines run overhead of the New Jersey transit lines - the electricity arced to the metal watch, entered my arm and blew down and out my feet. And that was that.
RAZ: What's the next thing you remember - I mean, waking up?
MILLER: Well, you know that feeling when you wake up from a dream and it was a bad dream? Well, I woke up in this burn unit and looked around and somehow still managed to have this sensation that the whole thing was a dream. Then I had the sensation that I have to go to the bathroom. So, well - so I think I'll get out of bed, right? So I pull out the central lines in my jugular veins in my neck. I extubate myself because I'm on a ventilator - a breathing machine. And I swung my legs out of bed and just started walking to the door - shuffling to the door to go to the bathroom. And then the Foley line - it's a catheter that goes into your - sits in your bladder. As I'm walking towards the door and reach for the door, the catheter ran out of line and it jerked on the tubing. And the moment reversed. All of it - realizing this whole thing was not a dream came crashing back. From there, I remember most of the experience.
RAZ: BJ nearly died from the electricity that coursed through his body. He lost both of his legs below the knees and his left arm below the elbow. And everything about his life from that point forward changed.
(SOUNDBITE OF TED TALK)
MILLER: I spent a few months in a burn unit at Saint Barnabas Hospital in Livingston, N.J. where I got really great care at every turn, including good palliative care for my pain. And one night, it began to snow outside. And there was no window in my room. But it was great to just imagine it coming down all sticky. The next day, one of my nurses smuggled in a snowball for me. I cannot tell you the rapture I felt holding that in my hand - the coldness dripping onto my burning skin, the fascination as I watched it melt and turn into water. In that moment, that little snowball packed all the inspiration I needed to both try to live and be OK if I did not.
RAZ: During his long recovery period, BJ began to ask himself basic questions about his identity and his purpose. He decided to finish his degree and then to use his experience as a now disabled person to help others. He eventually went to med school. But during his residency, BJ began to realize how the system was failing patients.
MILLER: And the volume of those failings became louder and louder and began to dwarf the suffering of just the suffering that goes along with dying, the sort of man-made elements of it. The created elements of it were extra tragic. So seeing the system as a source of the pain lifts your gaze to a different way. And that's the arc to get me to palliative care, when I became - got turned on to policy towards thinking about a health system, et cetera.
(SOUNDBITE OF TED TALK)
MILLER: Flash-forward, now I work at an amazing place in San Francisco called the Zen Hospice Project. When one of our residents dies, the mortuary men come. And as we're wheeling the body out through the garden headed for the gate, we pause - anyone who wants to share a story or a song or silence as we sprinkle the body with flower petals to usher in grief with warmth. Contrast that with the typical experience in the hospital setting. Floodlit room lined with tubes and beeping machines and blinking lights that don't stop even when the patient's life has. Cleaning crew swoops in, the body is whisked away. It feels as though that person had never really existed. Well intended, of course, in the name of sterility. But hospitals tend to assault our senses. I revere hospitals for what they can do. I am alive because of them. But we ask too much of our hospitals. They're no place to live and die. That's not what they were designed for.
You know, if you've been in a hospital, you get the feeling that that place is designed for throughput. So if you look at the physical plant of some of our institutions, they really are designed for the - to accommodate the clinician before the patient.
MILLER: So there's a good cue for the design world. You know, why have none of - why have our major architects - why have they not gotten involved in designing hospitals? It seems like an incredible creative enterprise. And beyond that, well, you know, how do we suffer? Well, poor communication, right? So doctors aren't trained in the very tricky art of communicating bad news and supporting people through difficult times, otherwise staffing the system around the human experience rather than the disease itself. So we might get really good at if you have a major test that's going to tell you if you're dying soon or if you've got an open-ended lifespan, you know, you're not left waiting for a week or two to hear the results of that test.
(SOUNDBITE OF TED TALK)
MILLER: If teasing unnecessary suffering out of the system was our first design cue, then tending to dignity by way of the senses, by way of the body, the esthetic realm is design cue number two. Probably the most poignant room in a Zen Hospice guesthouse is our kitchen, which is a little strangely when you realize that so many of our residents can eat very little. But we realize we are providing sustenance on several levels. Seriously, with all the heavy-duty stuff happening under our roof, one of the most tried and true interventions we know of is to bake cookies. As long as we have our senses, even just one, we have at least the possibility of accessing what makes us feel human, connected.
RAZ: You know, some of this seems so simple and yet we've been so bad at making the end-of-life experience better. Why is that?
MILLER: You know, from an existential point of view - right? - we're future-oriented beings.
MILLER: We walk around with a buffer in front of us of a future. We plan for tomorrow, next week, et cetera. But then when you're out of a future, it can really kind of short-circuit our human minds.
RAZ: But, I mean, we are all dying, right? I mean, the clock is ticking on all of us. Like, that's what it means to be human.
MILLER: Right, and it's part of living. And this is a critical distinction. Death versus dying - you know, dying - you're still living, you know, inherently. Dying people are alive. And this is a major theme of getting beyond the fear is realizing, oh, dying people are alive. So - all right, so let's pay attention to it. Let's design for it.
(SOUNDBITE OF TED TALK)
MILLER: So much of what we're talking about today is a shift in perspective. I am asking we make space so that aging and dying can become a process of crescendo through to the end. You know, parts of me died early on, and that's something we can all say one way or another. I got to redesign my life around this fact. And I tell you, it has been a liberation to realize you can always find a shock of beauty or meaning in what life you have left like that snowball lasting for a perfect moment all the while melting away. If we love such moments ferociously, then maybe we can learn to live, well, not in spite of death but because of it. Let death be what takes us, not lack of imagination. Thank you.
RAZ: BJ Miller. He runs the Zen Hospice Project in San Francisco. You can see his talk at ted.com. And you can learn more at zenhospice.org.
NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.