Difficult Conversations Podcast
Lessons I Learned as an ICU Physician
Episode 161 | December 13, 2021
The Problem With Dying
Dr. Bruce B.J. Miller
President & Counselor at Mettle Health
Welcome to Difficult Conversations with Dr. Anthony Orsini. Today, I have the distinct honor to have another incredible guest, and that is Dr. Bruce B.J. Miller, who is a longtime hospice and palliative care medicine physician as well as an author, TEDx presenter, and keynote speaker. He has given over one hundred talks on the topics of death, dying, palliative care, and the intersection of healthcare with design. Led by his own experiences as a patient, Dr. Miller advocates for the roles of our senses, community, and presence in designing a better ending. His career has been dedicated to moving healthcare towards a human-centered approach. His 2015 Ted Talk, “What really matters at the end of life,” has been viewed more than eleven million times, and his work has been the subject of multiple interviews and podcasts, including Oprah Winfrey, PBS, The New York Times, and the Ted Radio Hour. We will be talking about his book, A Beginner’s Guide to the End. Dr. Miller currently sees patients and families via Telehealth through Mettle Health, a company he co-founded with the aim to provide personalized holistic consultations for any patient or caregiver who needs help with navigating the practical, emotional, and existential issues that come with serious illness and disability.
We start out by hearing BJ Miller’s story, from his childhood experiences, his accident, and what brought him to work in palliative care medicine. BJ tells us a beautiful story about a nurse that locked eyes with him and held his hand upon arrival at the burn unit at St. Barnabas Hospital in New Jersey. Dr. Orsini talks about the importance of human connection between doctors and patients and how BJ’s story is very similar to Marcus Engel’s story, who was a previous guest on this podcast. BJ explains why we struggle with talking about dying, which starts with denial. And he shares thoughts on what we need more of in this mission of medicine to help physicians. Dr. Orsini talks about how training is so limited with physicians, which is why he’s dedicated the last ten years of his life to teaching them how to be more comfortable with end-of-life and tragic diagnosis. If you enjoyed this podcast, please go ahead and hit follow.
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Dr. BJ Miller (2s):
Dare, dare to be a human being first. White coats, the accolades, the diplomas on the wall are impressive don’t mean to take that away from us. It is amazing how much work we do to do this, to have the access to the work we do is stunning. It’s okay. But it ain’t everything. And that can go away in a second and dare to learn from your patients. No, we’re always asked to be the experts and we have feels like we have to puff up and posture and know everything. The truth is we can’t know everything. So don’t pretend to, there’s something very powerful when it’s honest, when you say to a patient, sir, ma’am I don’t know the answer to this question. I don’t know what happens after the end of life, I don’t know what happens if you don’t do this treatment, but I’ll not, I’m not going to run away.
Dr. BJ Miller (46s):
I’ll be with you. I’ll be bull looking at a best to get together that I can promise you. That is some most healing, powerful, gorgeous work you can ever do. And you’re not going to find it in a laboratory. You’re going to find it by living your life daring to be a human being.
Announcer (1m 1s):
Welcome to Difficult Conversations: Lessons I Learned as an ICU Physician with Dr. Anthony Orsini. Dr. Orsini is a practicing physician and president and CEO of the Orsini Way. As a frequent keynote speaker and author. Dr. Orsini has been training healthcare professionals and business leaders how to navigate through the most difficult dialogues. Each week, you will hear inspiring interviews with experts in their field who tell their story and provide practical advice on how to effectively communicate. Whether you are a doctor faced with giving a patient bad news, a business leader who wants to get the most out of his or her team members or someone who just wants to learn to communicate better this is the podcast for you.
Dr. Anthony Orsini (1m 46s):
Well, I am honored today that The Orsini Way has partnered with The Finley project to bring you this episode of Difficult Conversations: lessons I learned as an ICU physician. The Finley Project is a nonprofit organization committed to providing care for mothers who have experienced the unimaginable, the loss of an infant. That was created by their founder, Noelle Moore, whose sweet daughter Finley died in 2013. It was at that time that Noelle realized that there was a large gap between leaving the hospital without your baby and the time when you get home, that led her to start The Finley project. The Finley Project is the nation’s only seven-part holistic program that helps mothers after infant loss, by supporting them physically and emotionally.
Dr. Anthony Orsini (2m 30s):
They provide such things as mental health counseling, funeral arrangements, support, grocery gift cards, professional house cleaning, professional massage therapy, and support group placement. The Finley Project has helped hundreds of women across the country. And I can tell you that I have seen personally how The Finley Project has literally saved the lives of mothers who lost their infant. If you’re interested in learning more or referring a family or donating to this amazing cause please go to The Finley project.org. The Finley Project believes that no family should walk out of a hospital without support. Well, welcome to another episode of Difficult Conversations: Lessons I learned as an ICU physician. This is Dr.
Dr. Anthony Orsini (3m 10s):
Anthony Orsini, and I’ll be your host again this week. Today, I have the distinct honor and pleasure of having another incredible guest. My guest today is Dr. Bruce BJ Miller, who is a longtime hospice and palliative care medicine physician and educator. He is also an author fellow, Ted Talk, presenter and keynote speaker. He has given over 100 talks nationally and internationally on the topics of death dying palliative care, and the intersection of healthcare with design. Led by his own experiences as a patient Dr. Miller advocates for the roles of our senses, community, and presence in designing a better ending. His interests are in working across disciplines to affect broad-based cultural change, cultivating a civic model for aging and dying.
Dr. Anthony Orsini (3m 58s):
His career has been dedicated to moving healthcare towards a human-centered approach on a policy as well as a personal level. Dr. Miller is a graduate of Princeton University. He received his MD from University of California and completed his fellowship in palliative care medicine at Harvard University. His 2015 Ted Talk, not whether, but how aka “what matters most at the end of life” has been viewed over 11 million times. And his work has been the subject of multiple interviews and podcasts, including Oprah Winfrey, PBS, the New York times and the Ted Radio Hour. His book, which we’ll be talking about today, A beginner’s guide to the end”
Dr. Anthony Orsini (4m 39s):
was co authored with Shoshana Berger and was published in 2019. Dr. Miller currently sees patients and families via Telehealth through Mettle Health, a company he co-founded with the aim to provide personalized holistic consultations for any patient or caregiver who needs help with navigating the practical, emotional, and existential issues that come with serious illness and disability. Well, BJ, I am so glad. This is a long time coming. I know you’re so busy and it’s been great. You know, we first got to know each other when I saw you as a fellow speaker at the end physician global summit and conference, and I spoke there and he spoke there later on and I heard your speech.
Dr. Anthony Orsini (5m 22s):
It was amazing. And then I went and did research on you and saw your amazing Ted talk, which has a few more views than mine, BJ. Thank you so much for being on today.
Dr. BJ Miller (5m 33s):
Thank you, Tony. Thank you for everything you do, man. I appreciate you having me.
Dr. Anthony Orsini (5m 38s):
Thank you. I first got to know you a little bit when we did the global summit on physician burnout together, I guess that was back in August and I was an earlier speaker and you were towards the end. And so I made sure I set my alarm to make sure I saw it. And I was really loved your lecture and your speech. And then I became a BJ Miller fan. So I went on, got your Talk 11 million. My Ted talks at about 4,000. So I got a little ways to catch up to you, but
Dr. BJ Miller (6m 5s):
Just add some zeroes
Dr. Anthony Orsini (6m 6s):
it’s getting there. I just started in March. So I got some time it’s there all I got time. So, but I loved your Ted talk. And then I got your book and I’ve been a real big fan of what you do and everything that you say and believe really aligns with what I’ve been teaching and believing too. So let’s start out. I always talk about building rapport, but start out with hearing BJ Miller’s story. And as we like to joke on this podcast, how you reached the pinnacle of your career being on my podcast right now,
Dr. BJ Miller (6m 36s):
Right oh, early in my life, I was not headed for medicine. Let’s just say that I didn’t know where I was headed. And I was at Princeton lucky to be at a place like that in thoroughly in the liberal arts mode, I was there to learn and expand my mind and without clear sense of where all that was leading. So I was sort of a melancholy kid was pretty sensitive kid. I was very close with my mom, still am. My parents are alive, 56 years of marriage and they’re still cooking. God bless them. Yeah. I don’t know how they keep going, man. It’s amazing. And mom had polio when she was 18 months and then post-polio syndrome. It are pretty hard in her forties when I was 8, 9, 10 years old.
Dr. BJ Miller (7m 19s):
It’s so that kicked me. And the reason I mentioned that as well, I learned so much from my mother’s example as a young person growing up around disability. So when I became disabled myself, which we can talk about, I’ve been dying, was primed. I knew thanks to my mother’s example that yeah, these things happened. I was more apt to ask the question, why not me and why me? And it was a very helpful start to being in these shoes. But I think the bigger point there is a child growing up sensitized to disability and sensitized to how humans react to disability and react to difference and how we otherize each other all the time. And I was very tuned into that and was very flummoxed by it.
Dr. BJ Miller (8m 1s):
I didn’t understand why we human beings seem to love each other, but we also seem to really hurt the hell out of each other, coming casually, you know, wayward comments, thoughtlessness. I just was kind of stunned as a kid. Never really understood it, I still am I guess, but anyway, that that experience is something of a caregiver to, for my mom. Just, we didn’t use that language, but in terms of just being available, helping each other out, it wasn’t, it was no big deal, just the way it needed to be done. So we worked that kind of nonchalance around caregiving that seamlessly moving into caregiving role, just son role to brother role to whatever. I think that also really set me up nicely for this career that I’ve chosen.
Dr. BJ Miller (8m 44s):
So that fast forward, that’s sort of my setup in early life. There’s obviously more to tell, but that set me up. So then off I went to college and then sophomore year of college around this time of year, actually 31 years ago, November 27th, friends of mine and I, we were just horsing around and decided to climb atop of a parked train car. And it was just sitting there, the commuter train that runs from Princeton to Princeton junction for bedroom community for fairly in New York. And anyway, we just climbed it like climbing a tree. We didn’t honestly think we were doing anything that nuts, but it turns out that the train wasn’t moving, right. It was just still electrified. And in the New Jersey transit trains, the wires generally are overhead.
Dr. BJ Miller (9m 25s):
So there’s this metal thing that connects the train car to the power source. Anyway, when I stood up on top of the train, I was close enough to that power source and I had a metal watch on and the electricity arc to the watch. And that was that just instantaneous. And that landed me in a burn unit for months and close to death and blah, blah, blah. And well, I’m not blah, blah, blah. I don’t mean to be casual about that. There’s much to say about that, but then I did lose both my legs below the knee and my left arm below the elbow from the burns. And it also opened my eyes in all sorts of ways. And that’s really what set me on a trajectory towards working in medicine and healthcare. So that’s kind of what kickstarted this interest coupled with my experiences as a child, with my mom, coupled with this sort of human entanglement around suffering, how we flee it and how we also cause it, all those things predispose me to be interested in medicine.
Dr. BJ Miller (10m 18s):
And very specifically, really it turns out in palliative medicine, I was going to drop out. I went, I went off after college. I majored in art history and studied art. That was a very important part of this story for me. This is where I learned to see this is where I learned how to work with this thing called perspective and for a young man who was really kind of cut up by all the things he couldn’t change, learning how to change my perspective was magical, really powerful part of my own therapy and also deepen my interest in humans. And then, so after college, I didn’t really didn’t know what the heck I was going to do. And it was a little scary there for awhile, cause it was just enough to get through the day when I went back to school, after my injuries, it was just getting through the day was plenty.
Dr. BJ Miller (11m 2s):
So anyway, I ended up thinking that medicine would be a good use for all these experiences I had just had. A good way for me to work with these experiences rather than just somehow put them behind me. So off I went trying to go to medical school, did the post-bacc pre-med got into UCSF. And my promise to myself was I’ll just keep going until I either can’t do this. This is not meant for not martyring myself or if I find something I’d rather do I wasn’t in love with medical science. I’m in love with the idea of humans working with humans and medicine was a sort of a bag of tricks to work with and allow me to be in front of people with people. So off I went to medical school, blah, blah, blah. I was going to go to rehab medicine, Tony and I fell out of love with that.
Dr. BJ Miller (11m 42s):
But for all sorts of reasons, it was a very, at least at the time, a very mechanical field, it turns out I was much more interested in that sort of philosophical stuff. What do humans deal with? Things that they can’t control? So I was going to get out of medicine, this a deal with myself that I’d made. I was disillusioned with the sort of realities of practicing medicine, but then my Dean talked me into doing an internship. I happened to just do an elective in palliative medicine and honestly within a day was in love with it for all the reasons I bet you are too. And off I went,
Dr. Anthony Orsini (12m 11s):
It’s quite a story. It really just parallels what I believe. And that’s that human-to-human connection. That is medicine. That’s supposed to be medicine. I do not know if you’re familiar with Marcus Engle. He was on my podcast and Marcus Engle had a similar experience. He teaches in patient experience. Now he wrote a book called “Here” and Marcus was T-boned when he was in college and went instantly blind and had trauma. And his friends in the car all died and he woke up in a trauma bay and could not see. And they were putting chest tubes in and I was reading your story. That’s where I’m getting to this and was panicking. And there was a woman who just grabbed his hand. He didn’t even know if he dreamed it or not, but it turned out to be a nursing tech and just said, Marcus, I’m here.
Dr. Anthony Orsini (12m 57s):
And now Marcus spends his life by helping doctors train he works out of Notre Dame. But you had a similar person in your story, a similar person when you were tell us about that person.
Dr. BJ Miller (13m 7s):
Yeah, but the moved, even just reminding me, you’re telling me about Marcus’s story. And then she reminded me of my own. You know, this is such little poignant, exquisite little moments. They’re often very quick, you know, a little eye contact here and there. They’re not exotic per se, very accessible, which I think is part of probably our shared message, but you’ve got to do them. I mean, you got to sit, you gotta be with someone, you gotta be present. It’s that simple and that hard. And so there were several nurses in particular that really affected my course through the burn unit. The first was Joy Varcartabone. So this is New Jersey, the early your place to tell you, this is New Jersey in the early nineties. So you can imagine the hair and the nails and all us.
Dr. Anthony Orsini (13m 49s):
And by the way, I grew up about 20 minutes from St. Barnabas Hospital, as I know the area very well.
Dr. BJ Miller (13m 55s):
So you can, you probably walk past Joy Varcartabone, big amazing red hair and just sweetheart. And I don’t know that she was much older than me really. I don’t know that I ever knew, but anyway, coming into the, I was airlifted from the Princeton little local hospital where they did some emergency work and it cut the fascia autonomies to let some of the heat escape essentially, and then airlifted to St. Barnabas, the one burn unit in New Jersey. And I guess, and I barely remember this. This is all very hazy. And like you said about your friend Marcus, did I dream it? Was it real, I’m not even really sure it’s all kind of fuzzy, but some of the early memories were, they couldn’t get me. I was too tall.
Dr. BJ Miller (14m 35s):
I was almost six, five. And I remember them kind of trying to get me into the helicopter. I remember that being a really clunky, awkward moment in the pilots and then landing at St. Barnabas. And there’s a team waiting to receive this or trauma flights, as you can imagine. And I’m ventilated at this point I’m wide-eyed and this is just hours into the ordeal. Lord knows what kind of pain was happening. But so I landed in there and you could hear people talking, is it, do you know this is work. And people do all sorts of things to get through the day of work. And so some guys are taking bets on whether this guy was a goner, this kind of, sort of talk. And my eyes were just going all over the place. I don’t know what the hell is going on.
Dr. BJ Miller (15m 15s):
And Joy just like you described, just came sort of saddled up Saw me, just took one, look at my eyes and heard know she knew instantly took my hand. I don’t remember her necessarily saying anything. She just took my hand, locked eyes with me and she just let me know she was there and it was orienting and grounding and soothing and all sorts of miraculous effects came from that. And I hadn’t met any such moments from there on, out with joy and a handful of others that made this whole experience possible and even wonderful. I mean, cutting to the chase here, but I remember the day I left the burn unit and as Tony burn units are a hellscape, they are a particular brand of difficult in nature, continually kept at bay infection is the problem.
Dr. BJ Miller (15m 60s):
So their holy unnatural environment, everyone is gowned to the hilt. Anyhow, there’s pain is reverberating around the unit. It’s just, it’s intense. And, and your every day, the tank room and the, the, where you’d get washed and scrubbed and debrieded. But you know, those guys, by the way, the burn techs are some of the funniest, most beautiful people I’d ever met, I don’t know how the hell they did that job. I mean, it is their job was to torture people on, on their own behalf for their own good. And anyway, I just remember one thing to kind of summarize that experience was when it came time for me to leave the burn unit, fine, this is a celebratory moment.
Dr. BJ Miller (16m 41s):
You’re in the clear, you know, you’re leaving this intensive ward to do a step down place and on your way out to the world again, and in so many ways that should be a celebration. This is grad graduating. I made it sort of thing. I wept like a baby leaving the burn unit and this had become my home. Joy had become my, I don’t know what to call her. There was just anyway that even amidst all that pain, even emits all that loss. I was so at home there, thanks to that kind of hand-holding and that kind of eye contact in that very basic human love.
Dr. Anthony Orsini (17m 17s):
And that’s the miracle of medicine. And we are being bombarded with the topics of physician burnout and administrative duties, et cetera, and the working in a busy NICU, but I’m proud to be a neonatologist because I think just as well as any other specialty, but especially in neonatology, the neonatal nurses and the staff do death and dying better than anywhere I’ve ever seen. And it’s in that middle of the night when the mother is holding the baby and the father standing behind that, you really see what medicine’s supposed to be about. And of course, next morning, it’s epic and Cerner and any EMR. But I try to tell the young doctors, that’s not what medicine’s about.
Dr. Anthony Orsini (17m 57s):
It’s about that human connection. So your story and Marcus isn’t anybody who’s listening. If you haven’t heard the podcast, Marcus, it was like the third or fourth episode, Marcus is an amazing story, but let’s go on with your life’s work. So, so death and dying, I love the way you teach. We’ll get to the book later on. But why do you think is a cultural, or why do you think that in the United States, or even now anywhere that we have such a struggle with this and that it’s a topic no one wants to talk about. We’ll get to why physicians don’t want to talk about it, but what is it about death and dying? That’s really in your experience? Why do we keep getting it wrong and seeing it differently?
Dr. BJ Miller (18m 37s):
I think denial, you know, I think the refrain of we’re all in denial is oversimplified but true enough, and there are things we can enumerate to some modern life. But before we do that, I think it’s important to let us all off the hook. I mean, on some level, this is inherently very difficult on a couple of levels for one just hormonally neurologically. We are really wired for a fight or flight or freeze response to anything that threatens our existence. I mean that, that’s a reflex. You don’t really have a choice in that. There’s something in our wiring around this. So a that’s not our fault, you know, fine. And I think it’s also the way this odd, honestly, Tony, I’m not sure if the human mind is a great gift or a great yoke that we’re saddled with.
Dr. BJ Miller (19m 22s):
We can think ourselves into so much trouble with these minds of ours and we can cause so much trouble, but we can also get out of so much trouble with these minds of ours. The jury is still out, whether the human mind is in my mind, it might in my mind, the jury’s out, whether the human mind is a on-balance wonderful thing or a terrifying thing, but let’s just say it is very the way we conceive ourselves away. Mind constructs, a sense of self and identity. You know, there’s a lot to say about that. Both from a sort of a medical science, a social science and just a philosophical or spiritual basis too. And I think it is incredibly difficult for a mind to wrap itself around not existing, not being everything we’ve ever experienced the world, even if we’re completely soaked in the world’s beauty, not ourselves, even if we’re trying to ignore ourselves, it’d be completely altruistic, but we have to acknowledge that the world is, we ever know it is still washed through us.
Dr. BJ Miller (20m 16s):
We only know life through our experience. So anyway, I think it’s very difficult for mind. You’ll try conceiving of not being it’s the second you do. You find yourself being, watching yourself, not being, it’s just you getting these little loops. So anyway, we go on and on about that, that’s a big one, but I think the more interesting things and the things that we can actually affect are the social cues on top of it. Medicine’s commitment since the early 20th century to a disease focus, since the technology revolution around call everything that you don’t like a problem, and then go to war with it, and then we’ll kick it out in the bar experience that has its really severe limits.
Dr. BJ Miller (20m 57s):
It’s also led to incredible breakthroughs in medical science, but at a cost. So we’ve got a sort of a medical system that dominates our view of what life is that life is a pulse essentially, or life is a brainwave that is become the dominant sort of view leading our charge, what life is, what death is. So there’s all the problems of medical science and the limitations of the model that we use to think about life there, that flow from it. Meanwhile, you’ve got the erosion of religion. So places where most normally people would go to get answers to big spiritual questions or existential questions. Those aren’t the same. We don’t have the same general commitment as a community. Family structures are such that we move around a lot.
Dr. BJ Miller (21m 39s):
So you’re not living with three generations under the same roof anymore. So we’re also moving into cities. So I’ve noticed a big difference when I’m taking care of families who are coming off, a farm who are around the cycle of life all the time, birth-death is a daily thing as you and I know it to be, but we organize our lives to distort that reality. And it shows. So we put all of these things together and an economy that thrives on exploiting our desires and our fears and politics that go with it. And before, you know it, we are pulled away from our nature and that’s problematic in a lot of ways, make sense in a lot of ways. But the problem is what we ended up doing is kicking the can down the road. We end up making things more complicated or are harder than they need to be because we haven’t dared to look at it.
Dr. BJ Miller (22m 23s):
We keep them in the closet. We keep them in the dark until it’s just too late until we’re forced to look. And by then, there’s no time to develop a sort of a nuanced or subtle or thoughtful approach. You’re just a bag of reflexes freaking out, and this is what we get.
Dr. Anthony Orsini (22m 37s):
And then we add that to, as you said, a hospital and a physician basis of looking at failure or success by whether someone lives or not. My audience is going to say, oh, he’s telling the story again, but it’s apropos because I’m a big fan of Rabbi Kushner and his work and the author of “when bad things happen to good people”, but he tells a story it’s on YouTube. And I apologize my edits because I probably just said this a couple of weeks ago, but it’s so apropos. He was getting ready to do an interview with an evangelical healer and he’s in the green room. And he says, I’m very annoyed at this guy because this guy’s going around telling everybody that he’s going to touch your forehead and you’re going to be cured for whatever cancer.
Dr. Anthony Orsini (23m 17s):
And so he goes, I kind of have a chip on my shoulder. I’m kind of annoyed at him. And I just couldn’t hold my tongue. And I said, do you really believe that you can heal everyone just by touching their head? And the guy turned to him and said, curing is when you’re getting rid of a disease. Healing is helping someone when there is no cure, I can heal everyone that I touch. And Rabbi Kushner just tipped his hat and said, that was a great answer. And I think that as physicians, I talk about this all the time physicians, we don’t like to talk about that. And in fact, what do we do? We call BJ let’s call palliative care and dump on them because you know, and then my palliative care friends always tell me, yeah, they call me and I’m the bad guy.
Dr. Anthony Orsini (24m 0s):
You should be calling me earlier, which we can talk about physicians, you know, even breaking news. There’s one old study that showed that physicians are often viewed as uncaring compared to police officers. What is it about the physicians that you think is it just our type, a training of, we must cure everyone not heal.
Dr. BJ Miller (24m 21s):
I think culture moves us all in really powerful ways. And the culture of medicine is powerful, is profound. I remember when I was doing my fellowship at, you know, I’m the halls of mass general and stuff. It’s an amazing institution and I can’t help, but be moved by all that it’s achieved in a relatively short time. It is pretty remarkable looking at how we’ve pushed back on death in successful ways. We live longer by blah, blah, blah. So I’m alive. Tony very clearly because of Western medicine. There’s zero doubt about that. So it’s complicated. There’s a lot to love about it, but like so many sort of incomplete models as the medical model is inadvertently causes trouble.
Dr. BJ Miller (25m 2s):
And you say, you put together all our reflexes to run from the subject, the social cues that push us away from the subject. And of course the medical system is made up of human beings who have, and of course it has all the foibles of being a human in it. Our time is so fascinating, but in the west. So since mid 19th century technology revolution, industrial revolution, the time where America per se, as a country per se, has grown up, just happens to be super seduced by technology and by the power of the human mind to think its way through problems that is such a, has been such a successful mode. I don’t blame people for applying it to old age or death.
Dr. BJ Miller (25m 44s):
I think we’re just long enough down that course, where we have to acknowledge this. Isn’t a problem for us to solve. We can’t cure everything, at least not now. And meanwhile, if we’re really committed, if we’re doing medicine because we’re committed to humanity first and foremost, well then that thing called bedside manner isn’t just this kindness on the side. It becomes the thing. What I’d love to see happen Tony would I think HHS our medical system, I think we’re, we need a new Flexner report to tell us what medical education should be. I think we should rewrite our mission statement at HHS for my money. The mission of medicine would look very much like the mission of palliative care and palliative care.
Dr. BJ Miller (26m 26s):
As you pointed out as a specialty, why do you need to call this specialist to come in and remind you of these very basic fundamental things of human connection, et cetera, that inevitability of death, the non-failure of death, et cetera. Well, it’s telling the palliative care is a field as a corrective to a system that’s kind of gone a little wayward with itself and needs to be reminded of why we’re doing all this in the first place. So maybe it is after another dozen or more years of this kind of conversation being less and less exotic. Maybe the system will commit itself again to patient care, to healing versus curing this much bigger, broader goal. And we’ll live in a different place then.
Dr. Anthony Orsini (27m 3s):
Yeah. I also find that our training is so limited and as human beings, we run away from things that we’re not comfortable at. You asked me to do an appendectomy. I’d be really scared. I have no idea. And so what I’ve dedicated the last 10 years of my life is what keeps me going BJ is when I take a doctor, we train them, hour two hours, put them through some, role-playing teach them how to be more comfortable with it and the life or a tragic diagnosis. And then we do the anonymous surveys and they overwhelmingly write these things like this is something that now I feel comfortable because nobody teaches you how to do it. How do you do it? And then the other thought I would say is that one of the phrases that drives me crazy, especially if I’m teaching residents is no, we can’t.
Dr. Anthony Orsini (27m 45s):
There’s nothing else we can do. You know, and there’s always something you can do. You can heal and we are always going to be there with your patient. And so I just think what’s so gratifying is when I do teach a doctor this, or they get that cue of this whole kind of, it’s a human to human thing, their eyes light up. Wow. They didn’t tell me that medical score. Wow. Nobody told me that. Or my attending told me when I was a resident, just call palliative care and they’ll take care of it. So, well you have relationship with that patient for the last two weeks, right? Palliative care is really going to help you, but how about you be there when palliative care learns and then I’ll tell them, and here’s what I’ve learned. I’ve spent 10 years stealing from palliative care, listening to BJ, talk to a patient and saying, I like that phrase.
Dr. Anthony Orsini (28m 28s):
I’m going to use that. And so it’s okay to say I’m stealing. I mean, there’s nothing wrong with that. We’re helping people.
Dr. BJ Miller (28m 33s):
Can I say one more thing, Tony, on that, but I just want to highlight what you’re saying, which is the kind of care that you and I are striving for. And hopefully we do generally deliver ourselves, et cetera, et cetera. One of the compelling arguments to go this route is not just for better patient care and family care. It will be better for us as the clinicians. This is part of the answer to why we’re burning out, why this work is so frigging hard anyway. So I just want to make the point that this isn’t just another cue for us as clinicians to go learn yet another skill of being humane and kind, that’s not just to improve your patient outcomes or sort of that is to help you fall in love with the work that you’re doing and learn from it and to be humbled by it, to see yourself as a human being before your white coat, not by blah, blah, blah.
Dr. BJ Miller (29m 22s):
So I just want to highlight the link. You’re making that this is the route to a happier, better physician, not just happier, better patients,
Dr. Anthony Orsini (29m 30s):
A hundred percent. And, and you know, it feels good when I resuscitate a baby and I go home feeling great about myself. And I just, you know, we coded that baby. He’s doing fine, but it also feels good after a baby passes away and I see that miracle in the room and the mother gives me a hug afterwards because I feel like I did something good and we should stop considering that a failure. We did our best. And that’s just, wasn’t meant to be. So thank you for pointing that out. That’s a great point. So let’s talk about your book. I’ll share something personal with you. When I read your book a beginner’s guide to the end, I loved it. And I’m reading for the book and I’m reminded of my father-in-law.
Dr. Anthony Orsini (30m 11s):
So my father-in-law passed away and my wife’s going to get mad because I don’t know the exact age, but 95, 96 years old, he was an amazing man. Went through a very difficult life and was the most appreciative, happy person I’ve ever met. But my father-in-law toward at the end, as I’m reading your book and we’ll explain your book later about, you know, it’s very specific of like things that you should do as you’re preparing for the end. And it’s very practical guide. I’m reading the book and I’m thinking about my father-in-law going, did he write this book? My father did every one of those things. And I was like, he was beyond his years. And you know, in, when he passed, his goal in life, he always said he was ready to go. He lived a great life. He was so happy and I’ll never forget.
Dr. Anthony Orsini (30m 52s):
This is one goal was to live longer than my mother-in-law so he can take care of her. And the second goal was he didn’t want to spend a long time in a nursing home or whatever. So he died in his own house. And his last words was to my wife and he said, Lauren, I won. And that was his lap I won. I won. And I thought that was the most beautiful thing. But tell us about your book. It’s just a practical guide that I think everyone, probably some of it, you know, but you don’t want to talk about it, but it makes you think, I think it makes you think about life, not death.
Dr. BJ Miller (31m 27s):
Oh, right. Thank you. I mean, that is that’s. That is certainly the intent. I mean, so for starters, thank you for that story about your father-in-law. Well, that’s beautiful. Yeah. I agree. He one good way to glow and he makes a point too, that healing doesn’t mean living forever. Healing can still include dying and actually generally died. So thank you to your father-in-law is frigging beautiful. But I think what he played out was if you dare to rope death into your worldview, your sense of reality, your sense of life. If death is a part of life, well, right on the shoots, it loses some of its toxic charge versus this sort of this thing that we’ve inherited, which is more than life and death are opposed, that death is this thing that steals life.
Dr. BJ Miller (32m 14s):
This thing in the night, this thief that’s much harder. It’s a much harder story. It’s more cinematic. Maybe I’m not, maybe it’s more interesting or something, I don’t know, but it’s certainly more hurtful and less accurate. There’s not a living thing on this planet that does not die. It is just so entirely part of the deal. And so what your father-in-law has done and what this book is trying to help us do is this is for one, just help us dare to look at this thing called mortality. Even if you do nothing in the book, the practical steps, that’s fine. We’re all going to leave some kind of a mess one way or another. The whole idea is here is just to be sort of pristine through life and leave no residue. Get out of the way. That’s not at all the point.
Dr. BJ Miller (32m 56s):
So let’s celebrate our mess, but also our triumphs too, and wants to just help people, nudge people to dare, to look at their mortality so that you begin to learn the lessons while you’re still have life in front of you to play them out. I would imagine your father-in-law would make this point that keeping death somewhere. It is proximity. The idea that he’s not going to be on this planet forever can be cathartic. It can be compelling. It can be the thing that gets you out of bed in the morning. Cause you don’t have infinite number of mornings to get out of bed. And I hope you appreciate what you have while you have. It can also help you forgive yourself to not getting to everything because life is bigger than any one person.
Dr. BJ Miller (33m 36s):
And of course it’s probably always unfinished and this idea of closure is beautiful, but that’s a construction. We create closure. Otherwise life is this perpetual crazy thing. Always going, always swirling around with death. Just need to look out your window to see it or inside your own life to see it. So one point here is to help us look at this thing called mortality and therefore look at this thing called reality, and therefore look at the state called nature and human nature and to have a more expansive idea of what it means to be alive. That’s just interesting and compelling, powerful. And then the second step here is what the book is mostly about. And it is called a beginner’s guide to the end for a reason. This is the beginner stuff.
Dr. BJ Miller (34m 16s):
This is sort of the practical things you can do to kind of clear your deck a little bit, but don’t want to reduce dying to a to-do list. But there are all sorts of things that come along with a clerical, just paperwork issues. You got to push back on the medical system that all defaults will have you in an ICU on machines indefinitely, unless you say no, thanks at some point. So part of the point here of the book too, is, is practically how to kind of put one foot in front of the other and move through this experience. It’s also, when you’re paying attention, then you get to know when you’ve had enough. And when do you can just say, no, thanks to that next treatment. That’s going to keep you in the hospital instead of at home or whatever it is, then you can be thoughtful and you can welcome all the beauty into the mix too.
Dr. BJ Miller (34m 56s):
And you can avoid a lot of pain. That’s just not necessary. So that’s sort of the practical pieces of the book. But again, I think the most exciting stuff, if I were to write an advanced that’s the beginner’s guide and then the advanced guide to the end would probably be one or two pages. It wouldn’t be much. It would be love. Go find a way to love this whole dang thing. Don’t pick and choose it all. I love some of my life, but if only I didn’t have that, I just can’t have all good. Just go soak it all up. Bow down before it lean into mystery. Look at things you don’t understand. Just roll around with this thing called life. That will protect you against a fear of death. Big. So crippling it. Your love of life is probably the most powerful thing that help you through your death.
Dr. Anthony Orsini (35m 39s):
But as I’m reading it, I’m thinking like there’s suggestions. Are there write letters to your loved ones? Well, you don’t have to be dying to write a letter to your loved one. You can give them do it now. Exactly. And as you’re writing the letter, it’s actually making you appreciate that loved one. You’re telling the loved one. What it is that you love about them as if you were dying, you may not even be sick, but after you go through these exercises, my father-in-law wrote his memoirs. After you go through this exercise is you appreciate your own life and you appreciate other people’s lives. So as you say, it’s a big circle.
Dr. BJ Miller (36m 11s):
Yes, it is frigging amazing and beautiful. And the good news is you can’t have all the answers. So therefore you don’t have to have all the ends. You don’t have to posture. You don’t have to pretend you can just be wide-eyed. And that’s just honest and beautiful and including it could be terrified. I mean, I think part of the idea here is to de shame the things that we don’t have control over, we should not be ashamed to be sick. We should not be ashamed to die, should not be ashamed to have pain. That’s mean, the way we do that to ourselves and to each other. And it’s just unnecessary. So anyway, there’s a lot to say about this, but one of my favorite things about this subject is it’s not just harm reduction that do these things. So you don’t get torn up by the medical system at the end of life.
Dr. BJ Miller (36m 52s):
This do these things so you can love life while you still have some in front of you.
Dr. Anthony Orsini (36m 56s):
I love that. So BJ in closing here, I’m going to ask you for two more questions. Just advice, advice to the patient who is being faced with some medical challenges, maybe life-threatening or not life-threatening, maybe just getting older and then advice to w healthcare workers who are uncomfortable with this topic and uncomfortable speaking to patients. And if you can give us first the patient and then the healthcare provider. Yeah,
Dr. BJ Miller (37m 25s):
Well to the patient, I think I’d say the most important perhaps summary thing I might ever one way or another encourage a patient to do is pretty simple. It’s participate in your care. The days of just handing yourself over to the family doc, who’s known you for generations and on your family for generations, and you don’t need to describe an advanced directive to cause he knows you so well. And has the time to navigate all the bumps. The Marcus Welby is that does not exist anymore. The impulse to love and care for people exist, but the systems issues, the volume issues. It’s just not possible. So be very leery, be very careful of handing yourself over and sort of just to the medical system.
Dr. BJ Miller (38m 6s):
It’s not a malevolent system, but it’s not a beneficence system either. It’s not going to know what you want. It is too powerful. It can do too many things to you that you may not want to have happen. So I think first and foremost, it’s your life. It’s your death. It’s your care. Participate in. Think of your medical team as your advocates have people to consult with and to advise you and to get help from, but it’s your life. It’s your death. You can say, no, it is always legal and ethical to say no to any treatment. You can’t demand treatments, but you can say no to any of them. And at some point you probably need to from most people’s goals at the end of life. So I might basically participate your death, your life.
Dr. BJ Miller (38m 47s):
This is don’t hand yourself over. Then to the second piece for the clinicians in the crowd, the doctors, I think it’s like apropos. What you and I’ve been talking about. Tony is dare, dare to be a human being first. The white coats, the accolades, the diplomas on the wall are impressive. I don’t need to take that away from us. This is amazing how much work we do to do this, to have the access to the work we do is stunning. It’s okay. But it ain’t everything. And that can go away in a second and dare to learn from your patients. No, we’re always asked to be the experts and we have feels like we have to puff up and posture and know everything. The truth is we can’t know everything.
Dr. BJ Miller (39m 27s):
So don’t pretend to, there’s something very powerful when it’s honest, when you say to a patient, sir, ma’am I don’t know the answer to this question. I don’t know what happens after the end of life. I don’t know what happens if you don’t do this treatment, but I’ll not, I’m not going to run away. I’ll be with you. I’ll be, we’ll look in that abyss again together that I can promise you. That is some of the most healing, powerful, gorgeous work you can ever do it. And you’re not going to find it in a laboratory. You’re going to find it by living your life and daring to be a human being
Dr. Anthony Orsini (39m 56s):
That advice. Thank you so much, BJ. That’s fantastic. So BJ tells us just as closing here about how people can get in touch with you. Tell us a little bit about what’s a Mettle health, your organization, and there’s so many people out there that are probably gonna want to talk to you or reach you in some way. Tell us a little bit about that.
Dr. BJ Miller (40m 13s):
Well, please. So we’re getting better on social media where, Hey, we’re a little old-fashioned, but we’re getting there. So I say we it’s Sonia, my business partner and I who founded mettle health last year. I’ll tell you about that in a second. But so the Twitter handle, I think, is at BJ Miller MD and then our Instagram and the company twitter is just @ mettle underscore health and mettle is M T T L E like metal ones, inner strength, one’s inner reserve. So that’s how to reach us. And we’d love to hear from you, but Sonia and I, we are marinating on what to do next. After the book for a long time, Sonya was our research assistant and she and I have worked together for the last five or six years.
Dr. BJ Miller (40m 54s):
And then the pandemic hit and it made it pretty darn clear. The world needs. We always, we know the world needs more palliative care and we need access to it. It’s lumpy. So you can get palliative care if you’re lucky to be in certain health systems or certain regions of the country. But it’s actually hard to find even if when you realize what it is and get turned on or tuned into what it can do for you. So we started mettle health as an all-in line, accessible to anyone with a smartphone kind of thing, or even just a telephone as a way to make this kind of care more accessible. And we did that by dropping the medical piece. So if you come see me at mettle health, Tony, I will lead with my experience as a human being and as a physician, but I’m not going to be your doctor. I’m not prescribing medications.
Dr. BJ Miller (41m 35s):
I am seeing you in a social capacity to guide you through this experience, to guide you through getting the kind of care that you need to coach you on what to ask your doctors and how to hear your doctors, et cetera, palliative care is multidisciplinary. And one of his charms is it comes at this subject from many different angles, the social angle, spiritual angle, et cetera. So we let go of the medical piece to make ourselves more broadly accessible. You don’t need a doctor’s referral, et cetera can reach out to us anytime, whether you’re a patient or caregiver. So that’s why we started mettle health. And that’s what we’re doing. And we’re trying to build it as we speak. I’ve got a long ways to go, but please come visit us there.
Dr. Anthony Orsini (42m 11s):
Boy is that needed right now, especially with COVID. And we’re going to put all of this in the show notes so you can get visit us. And you can look at the show notes because I have a feeling, a lot of people are going to be contacting you. I certainly feel privileged and honored to have met you kind of in person. If we call zoom in person. So maybe one day we’ll get to meet and really in person. And I just want to thank you so much for being on today and for sharing your wisdom with us.
Dr. BJ Miller (42m 36s):
Tony, it is such a pleasure to talk to you forever. And I do hope we get to meet in person. Meanwhile said of these coasts, thank you for all your work, doing your doing Tony. These are the conversations that need to be more accessible. You need to be out there. I think a lot of our doctor friends want to do this kind of work. Just don’t know how to talk about it. Don’t know how to et cetera. So conversations like these and you putting them out there in the world make a big difference. And I really appreciate it.
Dr. Anthony Orsini (42m 60s):
Thank you so much, BJ. If you liked this podcast and you want to go ahead and please go ahead and hit subscribe or follow. If you need to get in touch with me, you can get in touch with me at the Orsini Way. Com. Thank you so much for being on and thanks for everybody for listening. Well before we leave, I want to thank you for listening to this episode of Difficult Conversations lessons I learned as an ICU physician, and I want to thank The Finley project for being such an amazing organization. Please, everyone who’s listening to this episode, go ahead, visit The Finley project.org. See the amazing things they’re doing. I’ve seen this organization literally saved the lives of mothers who lost infants. So to find out more, go to The Finley project.org.
Dr. Anthony Orsini (43m 41s):
Thank you. And I will see you again on Tuesday.
Announcer (43m 44s):
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