BJ Miller MD: Palliative Care Doctor and Founder of Mettle Health

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Dr. BJ Miller is a longtime hospice and palliative medicine physician and educator. He 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 navigating the practical, emotional and existential issues that come with serious illness and disability.

BJ has given over 100 talks nationally, and internationally, on the topics of death, dying, palliative care and the intersection of healthcare with design. 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 also been the subject of multiple interviews and podcasts, including Oprah Winfrey, PBS, The New York Times, The California Sunday Magazine, GOOP, Krista Tippett, Tim Ferriss and the TED Radio Hour. His book, A Beginner’s Guide to the End, was co-authored with Shoshana Berger and published in 2019.

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BJ Miller: Recording for the Enabled Disabled Podcast: this BJ Miller: Recording for the Enabled Disabled Podcast audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Gustavo:
All right, we are recording, B.J., always great to see you. Thank you so much for being here.

BJ:
Thank you. I'm very excited for this thing you're putting out in the world, brother. I'm really happy for say happy for you. I'm happy for all of us.

Gustavo:
Well, thank you very much. I appreciate that. I hope that I can live up to expectations and that. You know, we can we can make a difference and make an impact on the community, no doubt. No doubt. So I I'm just going to put this out there now just for for our listeners to understand. Your story has been well told before and many platforms, many people, you've already said what you've had to say at the highest level. My my interest in talking to you today is to explore some new territory, to dive into some new topics and then to see what you've been up to and get a feel for what's going on with with mental health. Does that sound good?

BJ:
That sounds great. Sam.

Gustavo:
So. I have been curious about. I know I know that you studied art in college and I'm not interested I'm interested right now. And like, what is your relationship right now to art? Is it something that is still a big part of your life? Is it something that you still appreciate working? Can you talk a little bit about that?

BJ:
Yeah. And I. Yes, I love. Well, thank you. You touched on one of my favorite subjects. Talk about. So Art for me is now is definitely a part of my life. I love to live with art. I love like, you know, hunting for it, collecting it. I love being around it. I love like I often will go to one of these days, not so much, but pre and soon to be post pandemic. If I didn't just jinx anything, it will. I look forward to getting back to museums. I you know, it's funny, I and it was this way when I studied it in college too. It's not that. No single art piece. Is I mean, there are certain pieces of art that I can't really speak to me that I particularly love, but it's so much of my interest in it is sort of the idea of art. I love that art exists. I love that the human impulse to create things from our experience and so much of the inspiration or poignancy that I derive from art. Is it simply that it's a reminder of the of being that being human is, among other ways, of looking at it as a creative act, that we find our way, we create our lives to some degree. We respond to things. We make things from what we were given. We improvised throughout any one day. You know that there's just a beautiful I think the creative lens is a beautiful way to approach being alive in this world. And I know it makes me one of the things that makes me. Very happy to be a human being sometimes. Sometimes I look at my dog or the cats I live with or other animals or trees, and sometimes I feel a little jealous of other other creatures in the world. Being a human being is tricky, but the fact that art exists is one of those things that really makes me love being human and loves humanity. So, yeah, there's a little whirlwind of an answer to your question, but we can go anywhere from there and more specifics.

Gustavo:
Yeah, so I. Is is there a specific form of art that you're more drawn to, or is it just obviously I can see that you appreciate it as a general act of creativity, but is there something is there some form of it that speaks to you more?

BJ:
Yeah, yeah. So traditionally for me, music has been really if we're talking about the arts broadly, like music has has has throughout my life been the nearest dearest, the most direct way in to for me. You know, there's I studied a bunch of different musical instruments as a kid and that certainly helped foment my interest. But like I think for a lot of us, music just speaks to us in ways that are, you know, unique and it's immediate. You know, there's an emotional pull. You don't I don't have to think about music. It's fun to analyze, like studying art history was fun to analyze things and contextualize them historically and hunt for, you know, why did someone make it sound like this or look like this and all that stuff? I am interested in that. But that is sort of separate. I'm interested in the creative process like we're talking, but also just the feeling of being around. And I started to say a minute ago, now I'm going all over the place. I started say a minute ago, I love to go to museums just to be or galleries just to be around art. I don't I often find times will go with through very quickly. I don't necessarily need to do much there or stare at any one piece of art. I just like being near it. It's sort of has a vibe of its own. And similarly with music, I just early on. Early on, I think I think this is probably very common, the things that I most appreciated, the kinds of music, the kinds of painting, the kinds of art in general that I that spoke to me were the ones that were sort of accessible to me.

BJ:
So musically, I've always loved because I used to sing pretty seriously and acquire, you know, like. I loved if I could reproduce it, if I could sing a song, you know, then I that then I like that song, you know, in a way it's somehow related to my own experience. And that was a way in. So in some ways earlier art was the same thing. This thing that I could recognize from my own experience and music was a big part of that, and specifically music with a melody and a harmony and things that I could track and and reproduce myself. But then as I got older, I got and I was around more of life and experience. I then I became much more interested in music and other art that didn't immediately speak to me that I didn't immediately recognize. It was became a way for me to pull out of my experience. And rather than going into my experience like early on, it became a way for me to go into the experience of others or go into places that was that were uncomfortable or, you know, dissonance with music, things that actually didn't sound lovely and pretty and easy to sing.

BJ:
Complicated rhythms and modern music, atonal music, tight weird harmonies, early polyphony like medieval and renaissance music. So so increasingly I'm interested in art that I don't that may speak to me a hit me on some level, but art that I don't understand, that's much that's become much more interesting to me. And so similarly, as I've gotten into more visual arts, you know, it used to be like this painting behind me, Stavo, you can see, you know, it's a it's a pastel of a landscape. It's a it's a pretty picture, you know, but that's a sentimental thing to me. That's a place I know. And so it's it's fun for me to see a painting of a place I know and sort of sentimental reasons. That's lovely. And sort of decorative in a way. But there's certain art that the big stuff that really gets me deep is as much more gentle, tends to be more abstract that I'm not seduced into being. Am I interested in this painting because it's portraying a landscape that I know or my interested in her technique or what in the abstract stuff like, you know, you don't recognize a place. It pulls you out of your narrative. And I'm increasingly interested in that. It pulls me to places I don't know that I don't understand. So with all that all that backdrop, the older I've gotten, the more interested I am in abstraction. Odd stuff, weird stuff. Not recognizable to me.

Gustavo:
I think I mean, there's so many layers there. My music has always been important to me, too, but I have come to love classical music so much because it took effort to actually understand it. It was not approachable. I didn't get it. You know, I started out by just listening to the same piece in the background five, six, seven, 10 times. And then I would go listen to it seriously. And it was an exploration. So I think I think part of it right, if I'm reading it correctly, is you're exploring new aspects of yourself, new aspects of life, different narratives. But I think that. Right. There's also the sense of. Again, tell me if I'm reading this wrong, but there's also a sense of of. Approaching something and trying to master it and trying to understand it, that maybe was alien to you before and now you're you're diving into it to understand something else about yourself or the world around you.

BJ:
Right on. That's that's. Yeah, that's a great way to put it. Gustavo, I feel total kinship with that statement. I guess it's only word I'd change would be master it. You know, I do I do love making the unfamiliar familiar. You can almost feel like a bet. You've had this feeling with classical music. It as you notice, with each listening, you notice more and more, even though it's always there, you notice a little bit more, you know, and then it becomes familiar. And then when you hear it, you can kind of finish the stanza, you can finish the song yourself. And I do love that process of taking this foreign thing outside of myself and beginning to relate to it and then pulling it inside myself so that it becomes familiar. Then then then that artwork sets up in me in my memory bank somewhere as part of my own makeup. So it's a way for me to stretch and pull and understand. I understand things. And even if I don't understand it cognitively, it's almost like it's almost like make it my own, have my own experience with that. I guess it's a little different from mastering Persad in my idea. So I just work. I make it. I'm picking on you a little bit, but otherwise instatement.

Gustavo:
Yeah. Mahzarin probably out of place there but yeah. No but the thought just struck me right that. There's an analogy there with disability and those narratives and like the awkwardness that people face when they first encounter it. I think there's some interesting parallels there, if we can think of approaching people with disabilities, the way we approach learning a new art form or learning something that we're unfamiliar with. I think there are some interesting lessons to tease out of their.

BJ:
Odali, a man I think you're right on about that, lots to say about that. Yep. Please do know, because there's something about art, a couple of things, a couple of thoughts. One is like by virtue of having a calling something art, you know, that means that's it. You know, what is art? It's a it's an important question. We could get sidetracked to altMBA quick tangent, like, what the heck is art? What's the difference between art and is a brick can a brick piece of be a piece of art? I mean, so intention's seems to matter. Context seems to matter a lot and the intention of the artist seems to matter a lot. But what is art is a is an interesting question in part because we can see our own lives as works of art. We can see anybody's life as a creation, as a work of art. And by virtue of calling it art, it almost it it out of the shoots, even if you don't respond to it or like it persay, it has some respect by virtue of it. It exists in the world. It's there whether you're looking at it or not. It doesn't need you, but it will relate with you. And there's a way into art that can sidestep a lot of the stuff that comes up between humans. And again, you're starting from a place of respect. You're starting from a place of seeking and trying to understand it rather than making it come to you.

BJ:
And I think there's a lot to be said about approaching any human being that way. The respect that it confers, the curiosity, the humility, and absolutely extra poignant, I suppose, in approaching someone with a disability or any difference from your own experience. But very but more specifically with disability, because as you and I have talked. The the differences, uh. By which we're defined as disabled people for us, can be grist, not this sort of sad, poor woe is me, this thing that I don't have to sing, that I wish it were normal. I don't mean to castigate that impulse to try to fit in and be normal. I certainly we all have that. That's but there's also something to push back on that. What is this thing that is normal, you know, and why do we have to frame things by in reference to something else, you know, artwork. If you're doing it historically, you'll compare and contrast. But art has a way of existing for its sake, for its own sake. And you're not trying to make it something it's not. I wish we did that with each other, especially around disability, to see it as this thing that as a bystander, you may not understand, but have curiosity about it, have respect for it, acknowledge its existence. And one of the kindest things we can do is acknowledge each other's reality. But another way, one of the harshest things we can do to each other is to deny each other our reality and playing with art, sitting with our sinking into it, spending the time around it, you know, that has a that just brings a totally different mindset of creativity and respect.

BJ:
And I'm repeating myself. So so anyway, that that yes, I'm super with you on all levels. And also like even more specifically, like, you know, for me as an amputee, I have my prosthetic legs. And for me it was a huge breakthrough in my own sort of therapeutic arc. You know, my own basically trying to inhabit my own reality, become come to terms with my life. That's why I studied art. Gustavo actually, that was it was a kind of a hunch that studying art had something for me to learn. There was something for me to learn in the way. So we've been talking and it was a good hunch. So when I started looking at my prosthetic leg as a creation unto itself, as its own thing, not a cheap replacement for this thing that I had lost, but rather its own thing, I could start seeing it all of a sudden as something that was beautiful and some that could be curious about something I could play with. You know, that was a huge breakthrough for me. Just personally. It shifted how I saw myself and that came directly well, in part fueled by my mom's experience and understand the basic understanding of disability as a civil right, et cetera. But studying art was the thing was specifically modern architecture, where they were pulling all the old like the appliqué, the decoration off of a building.

BJ:
And it used to be the norm would be you would you would hide the structural elements of a building, you know, you'd covered up with moldings and carvings and ornate stuff and beautiful stuff. But it was a covering. It was a cosmesis, you know, and modern art was a big breakthrough with Louis Sullivan and others was to pull all that stuff off and quit trying to make it some narrow, lame version of pretty like let's blow it up. Like, you know, humans have bigger capacity than just pretty, you know, like. And so we started pulling all the applicant buildings and started celebrating the structural bits for their own sake. That really rocked me. That was so big of that day. I came home from this modern architecture class class, pulled these foam, these sort of faux flesh colored foam coverings off my prostheses that were, you know, meant to help you pass. Right. They kind of looked like a leg ostensibly. So they're trying to help you pretend. So here, break to here was stop pretending, man. This. Yeah, this is an unusual leg. This is a different leg, but it's a cool leg in its own right. It's got its own forces, its own life. And that I mean, that was just for me, just a huge moment anyway. I can't now remember which question I'm answering,

Gustavo:
But no, no, we're just talking. So, yeah, this is this are welcome to my brain. There's no there's so much to say here. And he's out. Right, because I studied philosophy in college and graduate school and I was fortunate that my professors in the the way they taught. You you didn't criticize an ancient philosopher until you learned to understand what it was they were actually trying to say, so there was a respect and appreciation. For what you were engaging with, right, and you had the same thing in art, same thing in architecture. It's amazing to me that we we have this incredible capacity to engage in these ways with these subject matters, and when it comes to apply it to human beings, it's like everything shuts off and we go into animal instinct or whatever it is.

BJ:
Yeah, man, that's so true. It's so it's kind of stunning. I had this feeling a lot like of meeting like I especially like when we are in our undergraduate days and like our graduate school, all that stuff, we go around people who. Are playing so much devotion and thoughtfulness to the sub two subjects, but you take that they would stop, they wouldn't apply that same introspection and respect and seeking to their own lives, nor to the lives of others. This major disconnect, and it's not just a disconnect, but it's a tragic one, because if we gave each other that same respect that we can give subject matter like we do who but a different place. And I don't know why we don't. It seems like such an easy take that way of thinking and being and feeling and just simply apply it to the rest of your life. Why do you save that kind of beautiful way of being for the classroom and keep it out of real life? I have no idea. Do you have any do you have any ideas on why the hell we do that?

Gustavo:
I think that's a complicated question, probably beyond my I mean, there's lots of reasons. One idea is just we don't. I think the way our consciousness forms, the way we're culturally. Raised right where we're hard on ourselves, don't think of ourselves in the same way as we think of other people. Maybe we're not aware it's a lack of awareness that I'm trained to do this specific thing and learn the specific pattern here, but. I don't know, maybe there's something in our brain, something in our in our consciousness and our humanity and our culture that somehow just prevents us from applying it to ourselves. I mean, some people have clearly done it more than others. Some people do treat people with with more of that curiosity, more of that openness, of wanting to wanting to engage with another person and understand them and learn from them and grow from it. So it's definitely possible. But that's a huge question. I'm not I'm not sure

BJ:
I'm not either brother. I mean, but I do think God does give us a little bit of a compass, like as a way that we there's of of of seeking preexisting ways, of being ways of thinking and applying them more broadly. Like I do think we're in a time of sort of. Look, I'm not interested in, you know, no new stuff for a while, I'd love to see a moratorium on innovation for a while to force us all to actually work with art, with what already exists. I think we get this momentum going and we are attracted to the next shiny object and we blow past all sorts of stuff. So I almost long for a moratorium on innovation for, I don't know, a couple of years to force us to slow down, pay attention to what we already have, because what we already have is huge. I mean, just like on this on this note, I mean, we could, you know, looking around for ways of thinking and feeling what we have them and all these beautiful classrooms we have, there's plenty to draw from. So I'm with you. There's something about momentum. There's something about context, context which people need to get. We need to make that a very conscious activity.

BJ:
So the context of a classroom or a studies versus the rest of life. So not getting hung up or more realizing that we have some say over how how we place the frame of reference, the field of view we can change the context is another way of experience. A thing is is playing with its context. So seeing even that as a creative pursuit. And then I guess the last little hunch here together would be as social animals. You know, the expectations, it relates to context, so but social animals, the expectations in a social setting are different from a classroom. And I think if we just spent a little a moment there, we could open that up and make those switches conscious and and blow it up a little bit. But anyway, I'm with you. I don't know exactly. I don't have a I don't know exactly why it is the case, why why human beings do it really just about anything that we do. But, boy, it seems awfully tantalizing to think that God's salvation is waiting for us with the stuff right in under our noses, the things that we even already know just need to apply them a little differently or more broadly or something like that.

Gustavo:
Absolutely. And I think the idea of time is, is the way we use it, how much of it we have. Obviously, we only have so much, but we're always in a rush. It's more and more and more. It's go, go, go. So if we actually took the time, made the time, created the space to sit or socialize, engage in a community of people. Mm. Maybe that light bulb would come on.

BJ:
Amen. Amen. I wish we'd like. Yeah, I mean, it was right, I mean, it's just like. It seems to be so much about paying attention, you know, if we can find a way to pay attention, and that's at odds with the speed, as you just described, that which we're moving, it doesn't allow us to settle into things and we just don't notice stuff. And that's that seems like a big shame. And especially in the context of realizing, as you and I do, that we are mortal. We're not here forever. So, boy, we do squander a fair amount of time, though.

Gustavo:
We do. And I think the other point that you were talking about that was really interesting is the idea that realization you had of not hiding the prosthetic, of having it be a part of you, of an eye. When I was young, the prosthesis was something and the brace was something that I used to get around. And it was what it was as I got older. Yes, it was less cosmetic and I felt it. Become more of a part of my body, and I think it's also interesting to explore, you know, how do you express yourself in your prosthetics by what you're doing versus the person versus me versus somebody else? Right. There's people who are incredible athletes. They're expressing it in one way. There's people who maybe they're into dance or some other. Just just the way we we move in the world, the way we express ourselves in the world, it's it's different for all of us. And I think that's that's a really interesting point that you brought up

BJ:
A man, a man. You know, there's like a I don't know how you feel about the word aesthetics, Gustavo. I love that word. It's me. It's made it's so much a naming what we're talking about, because to go a little to to settle into these funny legs of ours, you know, one of the ways I don't know about you, but one of the ways that I have that has allowed me to settle into it is, is to see its aesthetic, its look and feel its fit and finish the material, the qualities of the material, the honesty of it like, you know, does. Can I see the mechanism in action or am I covering it up or my hiding something? And there's nothing wrong with I playfully hiding things. You know, it can be a way to I can imagine someone really delighting in playing with the reveal of a prosthesis or applying that sort of craft that love, that love and craftsmanship. I've seen I've heard of people who get these cosmetic covers and then have a little hairs inserted and veins and it becomes a sculpture. That's not been my way. But hey, each year on this, like you say, this can be individual expression and all this variations on themes we all share.

BJ:
But individual expressions within these themes is what a huge potential we're given this incredible raw material to play with, unlike a lot of folks who have their, quote unquote, regular normal feet. You and I, we have these you can see this as adornment, you know, as ornaments. And we can play with those that we can. And another way of another way, putting all that is by finding some way to get into them, to delight in them. This look, this, feel this, touch the effect, all of it, any of it. These are all root for me. Anyway, I realized that these are those roots of fascination and playfulness and interaction, engagement of inhabiting your own life and making it your own life. You know, all these things are proxies or arrows that point us to a way of basically trying to find a way to love life, love our lives, love ourselves even. I know that's a hard that's a hard that's a big ask. But these are ways these these aesthetic roots are ways in to being to to caring about your reality and eventually maybe even loving it.

Gustavo:
I couldn't agree more. For me, the word aesthetic is interesting. I think it depends on the context. It depends on who's saying it and kind of understanding their perspective. More aesthetics can obviously be. A terrible word, right, a very superficial thing, or it can be it can be as deep and profound as you're willing to make it, which you just showed right now. For me, it's I think of it. I'm not a scientist, but I've always thought of it scientifically. What can I do with this? How can I express myself? What are my limits? How can I push those limits? How can this be better? How can I be better so that I can use it more effectively for the things that I want to do? And then I guess there's a certain aesthetic with that, too.

BJ:
There is. There is. And if these are ways in that, I would encourage you to pay attention. Well, you know, once you're paying attention, you'll start noticing things and you'll notice ways to tweak it, make it better, make it different, whatever. But you've got to find some way to pay attention. And there's you and I both know that can be hard with physical differences and disabilities, in part because it can be very painful in a parent, whether they're pains that go with this for a lot of us and there's social pain that goes with it. There's there are a lot of forces that conspire to make us want to either denial and experience or somehow not think about it. And of course, we know what happens when we are not paying attention to things. So as far as you're talking, these are ways of paying attention there for one when you're paying attention, these are ways to optimize, maximize, take advantage of appreciate, et cetera. And that's an extra there's an extra big cell sale to us in the disabled world, I think, because otherwise our body is just a little bit more likely to be a source of pain or embarrassment or something that keeps us apart from ourselves, you know, and that's

Gustavo:
Something we have to overcome, something we have to prove. Right, that we're still worthy. All of those all of those things that are attached to it.

BJ:
Right. Somehow put behind us or whatever it is. Right on. Yeah. Yeah.

Gustavo:
Interesting. I would like to to shift a little bit because. The the the connection that I want to draw is. What we've talked about. Right now, about disability, about our experiences, about our aesthetic mindfulness. Mm hmm. So I've I've worked with you on a couple of sessions, and I'm going to do more. And we have had we've had some really good talks, helpful discussions through mental health, which is your project now. And I would like to maybe use use a little bit of of my my situation with you to kind of highlight. Some of the things you're doing that, yes, you're still in the palliative care field, but mental health is so much more than that. And I'd really, if it's OK with you, I'd like to kind of dive into your work, but kind of use use me as an example so people can get a better understanding of what you're up to, what you're trying to do

BJ:
That be beautiful. And I'd I'd love that. And I really appreciate you going personal, Gustavo, that that this I wish I wish the rest of the world find a way to do that. It's a totally adds a whole other dimension. I really appreciate your willingness. So, yes. Let's let's dive in. Awesome. So.

Gustavo:
I reached out to you. We had a session and can you can you just give me, like, give the listeners just a quick, you know. Yeah, two minute idea of what MetroHealth is and what you're trying to do.

BJ:
Yeah. Thank you. Yes. So mental health, it's spelled m e t t metal as in like one's inner strength, one's inner reserve. So mental health outcome is is an online palliative care counseling and coaching business that my partner Sonia and I started last last year, about a year ago or so. So that's that's the main that's what that is. But you got to have to understand what palliative care is. And we can get in the weeds a little bit. But that's the that's the that's the that's the marquee. But settling into what we actually do. So. So a couple of different things about our model. One is that it palliative care is an amazing approach to health, an approach to care. It's something of a philosophy. And it tends to be it is is born in the health care, the medical model. But there's much about it that is not medical. And one of the things for me was to I left my clinical work at UCSF, where I was working in the cancer center for many years doing palliative care. We called it the symptom management service, but that was very much so a medical model. And there's a lot to say about the medical model. But suffice to say, at least for now, that the medical model leaves a lot of stuff out and the medical model tends to pathologies people.

BJ:
And the medical model is you and I both know has has been a mixed blessing for us in the disability world. You know, there's there are other ways of looking at understanding a life besides just the sort of bio sciences. And there's more to an experience in a life than just sort of a diagnosis or a disease state. So mental health was and palliative care is itself as a field is meant to help blow up the medical model a little bit and welcome the emotional, the social, the spiritual aspects, the experience of living with illness, not just a transaction of trying to treat a disease so proud of care. And its base is trying to be this much bigger thing, this portal to upload other interests besides sort of molecular interests into the experience of care. So that's an aspiration for the field. So let me let me just digress a little bit more, because a lot of your listeners, you may have heard of palliative care, but it's generally conflated with hospice and end of life care. What's really important is the impact of care as a field did grow up out. It grew out of the hospice. Hospice came first in this country. But in the 80s, hospice defined itself as an insurance death, a benefit and limited this kind of care to people who had six months or less to live and who gave up trying to cure their illness.

BJ:
So that's how you qualify for this kind of care called hospice in our country. Well, so that's lovely in a lot of ways. And many, many people have benefited from hospice. And I understand why the government put those limits on it back in the 80s to name this structure structure and to pay for it. But the truth is, of course, like there's no magic to six months or less to live. It's not, you know, and A and B, we're terrible at prognosticating anyway. People often we all were either over or under do our prognosis all the time. And then and so there's also this cross. This crossroads is a fork in the road, like why would we make ask someone to give up anything to get this kind of loving support? So the field of palliative care grew up in the nineties trying to push to blow out the walls of these limits around this hospice idea. So now palliative care is this is simply the sort of interdisciplinary pursuit of quality of life. That's the cleanest way I might be able to put it. So, you know, in that definition, any definition of care, you won't see any mention of death.

BJ:
We don't run away from death, but we're not focused on death necessarily. Hospice is a subset of palliative care. It's a kind of palliative care that is devoted to the final months of life, but otherwise passive care. A lot of my patients, you know, have years to live. And when I was at the in the medical world at UCSF, I've had patients for ten years. And so that's all backed up to say with mental health. We wanted to take this aspiration of this potential for this philosophy, this approach to care, take it, try to even pull it, make it bigger by pulling it outside of the health care structure, the limits that go with health care as a as an industry, because if you're a subject matter is quality of life. Abating, suffering, finding joy, making meaning, you know, these are not these are not medical things. And so we I realized that we were in the health care structures. We were unnaturally curtailing or limiting the huge potential for this field to touch many more people to be relevant to many more people. So for four, that was a big impulse of mental health, was to pull it out of health care. We let go of the medical piece. I am a doctor, fine.

BJ:
And I'll talk to people about their medical things. But I'm not becoming someone's doctor through mental health. That's that's an experience, a body, a skill set that I have that I can apply, that informs how I talk to people, but isn't the whole enchilada. And so I don't want to necessarily just become yet another doctor for people, people who Oppenheim's too many doctors, but rather, I will sometimes coach people how to use their doctors a little bit better, how to communicate with them, how to navigate this crazy health care system. So, so right. So we got rid of all the structures and then we don't need a doctor's referral to come to us, have mental health. We have nothing to do with health insurance. And you don't even have to have a disease to qualify. Whereas if you were to find a conventional palliative care program to qualify, you'd have to have some serious diagnosis. And there again, you bump into these manmade limits. We're trying to get rid of those manmade limits and open it wide, wide open. So that's sort of the impulse for Sonia and me to start mental health. So now enter our experience center. Gustavo, I mean, it's such a beautiful case in point. Like your first of all, you're not dying as we know anytime soon. You know, you're not

Gustavo:
Only in so far as we're all dying.

BJ:
Right, right. Right. You're still in that club, right? We're in that club together, too. Right. But right. You have an indefinite life span ahead of you. You have, you know, certainly your deal. You touch upon the medical system, but you are much more than a diagnosis and, you know, way more than you have experienced, you know, way more about your diagnosis than most doctors anyway. So in this way, I'm not asking you to come into the health care system and medicalise yourself and hand yourself over to quote unquote experts who actually know less than you do in this mental health way. We can sidle up to each other as fellow human beings and share and kind of talk things out together. Reflect. I can help you sort of interpret the medical world a little bit and put it to good use for yourself and leave the rest behind. And you and I can of course, we can wade into sort of issues of identity. How do we see ourselves with this disability stuff? Do we find the right words to describe our experience? Like how do we transcend the words were given like disability, for example? So you and I. So you're a great case in point, whereas you might not qualify in a medical system for palliative care or certainly not hospice in our bigger picture where you're super welcome with us at mental health. So anyway, that's a little that's a long winded, but it's sort of an explanation about how mental health what why it's a little bit different, why pound of care is a little bit different, and then why mental health within the purview of health care is itself a little different still and then a little bit of a bit of what you and I can do together have done together. But I'm curious to hear about your experience on the other end of it.

Gustavo:
Absolutely. So I my initial thinking right. In approaching mental health and using the service was number one is everything that you said. It'd be interesting to talk to you about disability, how we perceive it, how I've how I've learned to adapt with it. Let's talk about prosthetics. You know what what prosthetics might you know of that might be better for me. Right. Let's talk about our experiences with prosthetics. You were super helpful with that. But I think on a on a on a deeper level, and this was something I'm still learning and was phenomenal is how to approach doctors because, you know, I went to an institute recently that specializes in my condition and. Well, we'll start we'll start from the past, so growing up, right? My parents, I was born in Brazil, my parents came to the States, they interviewed a bunch of doctors. My father happened to be a doctor. So it helped from Canada, from Japan, from the United States, from other areas in South America. And I'd say half of what my parents heard was, your son is never going to walk. He's going to crawl around the ground like a snake and, you know, basically be a burden to society. Hmm. So. There was there's clearly some trauma there and some things that had to be worked out, there's clearly the idea of even when I was young and the doctors were trying to help me and we did discuss this like you're in a room.

Gustavo:
I'm in a room, basically. In my underwear and people are talking about me, I don't understand what they're saying, they're poking and prodding, they're trying to help. But it's not a good experience for me, though. I saw this. You know, again, it has been a long time since I had been to an institute like this. I've gone and seen, you know, quote unquote, regular doctors and to see some parents who were hopeful. They're kids, you know, it's a young children, there are some of them seem like they're doing great. Other parents, you see the desperation in their eyes. You see the fear. You see the uncertainty. I experience those things, too. So it really brought back a lot of of old feelings. But we talked a lot about what kind of headspace should you be in when you go to see a doctor? Because no matter what we're going to a doctor for, if it's something minor. If it's something major. We are more vulnerable. We don't know what they know. We don't understand what our options really are and they can tell us anything. And if. If. If we're in the wrong mood, if we're if we're weak, if we're not well informed, we could very well fall into some terrible outcomes. Mm hmm. And so it was really helpful. Like it stuck with me. One of the things that I said is, Stavo, you don't owe the surgeon's ego anything. Right. But there you go.

BJ:
Amen, brother. Yep.

Gustavo:
So, you know, and I found that was super helpful. How do you know? Like, I think maybe I'm wrong, but in my experience, I've heard stories, people that I've been interviewing you hear it all the time. The word never. Right. You're never going to do this. You've had this accident. You're never going to be there. You're born this way. You're never going to be able to do X.. That word to me seems like the biggest. Not only is it a poison in many ways, but why are we even using it when we have all these people that are showing us otherwise? Why even use that word at all as as a doctor?

BJ:
You know, I didn't see. I'm right. Let's see. Let's see. Let's start with the hypothesis that the doctors at health care in general is filled with people who meanwell. Right, right. Let's start with that thesis. I'm sure there are challenges to even that thesis, but in my experience. I you know, I have whether as a patient or as a physician, I have become convinced that by and large, people who go into debt to study health sciences just for the privilege of caring for another human being, that in it's by itself, in its nature, that that pursuing a career in health care tends to attract people, really give a damn, you know, and that. And so I believe that to be true. There are absolutely exceptions. But let's start from there. And then you start then then on top of that, those good intentions, of course, there's a medical training and the vernacular, the language, the habits, the culture of medicine. Then you throw all that stuff on top of training, on top of those good intentions, and then you throw in outrageous busyness. This like the turn, the screws get turned tighter and tighter every year. You got to see more and more patients have less and less time life. The treatments are becoming more and more complicated. You know, it's a mess. It's it's a hot mess. And so you put all that together and out pops doctors who say dumb shit and and are so consumed with all those things that I just rattled off that they've had to tend to, et cetera, that their own openness, their own curiosity, their own kindness, their own warmth, their own thoughtfulness gets beat up and beat out.

BJ:
So one of the things that I'm talking to young medical students or nurses, deans or anybody else is to encourage them to protect their their basic, caring, compassionate selves that they're most likely bringing into the field. Like, you've got to protect that. The system by itself will beat that out of you. I don't think the system is inherently malevolent, but by its nature, we keep asking more and more of this system that's just not designed for this stuff. So one way or another, out pops these these doctors saying and doing really lame things, hurtful things, which is, of course, it is the height of irony that we in health care end up sworn to help people end up hurting people. And there's there are mountains of evidence to support that sad truth. Darn it, now, so anyway, that's a little sort of backdrop to your to to your point here. So one way forward. I say all that to prime us on the receiving I'm talking to as a patient, you know, a fellow patient, quote unquote, for our own sake, it's very helpful for us to kind of know how to read what we're seeing. And I think it's in general helpful for us to understand why doctors are the way they are, not to forgive them. That's not to excuse them rather, but to at least understand, to be able to translate what we're seeing and hearing and feeling from these guys.

BJ:
So that's that's that's that's one point. And so to get to your more focus question, though, you know, words like never crop in because I bet at best. So, again, start with a hypothesis that these are well intended efforts. So best I think that no word is probably from a doctor saying, gosh, I really need this family to understand this. This is this is real. This is significant. This is going to take some effort and to not casually just I don't know what just casually sort of underestimate what they're dealing with. And if we underestimate what we're dealing with, therefore, we may not be prepared. We not may not plan accordingly. We may not give them time and space that it requires. So at best, I think when people use that word, they're trying to get across like, hey, pay attention to this. This is serious or whatever else. I want to manage your expectations, you know, as it can be a kind thing to do. But so let's even if it's even if that's the intention. Well, the truth is we shouldn't say stupid words like never because we don't fucking know doctors are wrong all the time. To your point, there's evidence to the contrary all around if they're paying attention, but they're not paying attention because they're too damn busy and blah, blah, blah, like, so around and around will go. But at my best, that's how I think words like that creep in and and why I would encourage you and myself and anybody else to feed back to those doctors, because otherwise, I think we also have a reverence for doctors in some way that we don't speak up.

BJ:
We hand ourselves over and our experience is relegated to sort of somehow less relevant than their own somehow. And in this way, we diminish ourselves and we pump up these doctors who and frankly, I can tell you, I as a physician, I don't enjoy that. Sometimes it feels nice that people think you're Godlee to be a doctor, but I don't enjoy that because I'm not God. I would much rather I should be treat me like a fellow human being for my own sanity sake, like someone coming at me that I'm going to work miracles. I've got to gently let them down and let them know I'm just another human being and I can't work miracles, et cetera. So we we conspire to make our doctors arrogant, sadly, you know. So part of the message here is no, treat him like a fellow human being and feedback and say, hey, doc, you really may never you know, I don't know, I saw this guy or hear that guy over here or that word doesn't help me or whatever it is. I love to get a point where it's actually a fruitful exchange between human beings rather than a doctor up on high. And this poor patient who knows nothing to down low, exposed, vulnerable in some ugly gown. So anyway, that's a little riff on your question about never. I mean, what do you think, brother?

Gustavo:
I agree, I. Again, that that's why the experience was is worthwhile and why I love it because, a, I understand their perspective, I understand what they're going through and what their problems are. So that helps me not take it personally. Exactly right. It it gives me some objectivity. And then you gave me some new approaches. Ask them some questions, be curious, be polite about it. You know, get get into it with them just a little bit more on a human level. All of those things are super helpful because. It's human to human, and it's not it's not what you said, it's not this authority figure that you're looking up as some some God who's going to fix all my problems right on. So absolute. I agree 100 percent. It's also. Do you think that if, say, a physician, a doctor said, look, you're odd, the odds are against you? You know, if I were to give you an estimate based on my experience, you know, your. 80 percent, there's an 80 percent chance that you're going to have X out of this outcome or there's. A 10 percent chance, whatever it is. Do you think that that doesn't carry the right emotional weight so that we use we kind of overexaggerate and use those words like never instead does probability not not hit us the right way?

BJ:
I think you're right about that, and part of medicine in some ways is a reductive process and certainly the health care system reduces our problems to a 15 minute encounter. And all this is insane. So I think you're right on there. There's a thread to make things that reductive simplification process tends to make things want to make things concrete. Yes. No, always. Never black, white. Those are just more convenient, you know, and they're more striking and they're easier to study these dichotomous variables. The truth is, so much of life exists on a spectrum where all of it's all proportionality. It's not yes or no. It's sort of to what degree. And so I'd like to think that we'd all respond to more nuance, like 80 percent chance of this, 20 percent chance of that, because in that we can hear both the likely reality and the and the possibility that it could be something else, but that that takes time to to communicate, that takes time to listen. You have to hear that in a certain way. And that begs for a more complicated conversation that can generally be had in the doctor's office unless you, the patient, push it. So, yes, I think you're on to something. I think you're really on to something there. But you're also reminding me of a related tangent, which is what you come up against this and prognostication when we're trying to offer prognoses, what I love your doctor to do, especially when you're when you are younger, therefore more impressionable. You know what? But it really any encounter, it's not just faithfully transmitting information.

BJ:
That's not just the goal of a clinical encounter that's important. But you got to kind of titrate that information to what the person is is able to take in is able to deal with. And so sometimes there's a time and a place to hold some silence and not foist data on another person. So I would love it if your doctor had said had asked, hey, Gustavo, would it be helpful for me to kind of would it be helpful for me to lend my experience and look down the road a little bit with you and try to guess where you might land 20 years from now? Would that be helpful to you? Gustavo, you know, because then you're you get to say, you know, I don't know the way I'm wired. If I hear that something may go a certain way, then all of a sudden I'm kind of and then becomes a self-fulfilling prophecy. And you know what? I what really works for me, Doc, because thanks for asking in a book. I feel your support and kindness and you're allowing me to relax and actually think in your presence. You know, actually what we take it sort of one day at a time, you know, and when I'm ready to ask that kind of question, I'll circle back. And boy, do I appreciate you the respect you just show me by asking me whether to tell you anything. That's the way it really should go. What a different experience that would be. Rather than bombarding and beating people up with information, the name of truthfulness, which often happens,

Gustavo:
I would that would be amazing. And I can tell you that would be amazing even today. I would love that question. You know, going to the doctor tomorrow, that would be beautiful.

BJ:
Yes. And now, you know, not not now you know, Gustavo, you know these things, but like but it and a next follow up sense and will come up in mental health visits with you and others potentially would be OK. So how about you telling your doctor not waiting for them to ask, saying, hey, doc, before we go any further, I'm the kind of guy who likes information a certain way, you know, so we patients, we don't have to wait for medical education to shift and the pressures on doctors to wane and or, you know, we can participate in our own care, of course, and we can participate in getting the kind of care that serves us well from our doctor by telling them what we need and how we need to hear things. Yeah, so that's the next that's the next level, that's the next layer of sort of taking that responsibility onto ourselves and helping to craft this experience in a way that's actually going to serve us rather than squash us

Gustavo:
In kind of an interesting tangent. But I have an important question, too. But an interesting tangent is my favorite clients. And what I do on my day job are the people who have a good idea of what they want and what they like and what they care for, care about. And they tell me, look, I'm really into music. I want the greatest musical experience you can give me or I don't really care about X, but this is what I want to accomplish. That helps me enormously to do a better job serving them. So I think that's again, that's a beautiful point that we can carry over to a whole bunch of different professions and a whole bunch of different contexts.

BJ:
Totally. Yep. Amen, brother.

Gustavo:
I'm super curious to know when you are a clinician and you are practicing as a doctor. How did you protect your protect that humanity? How did you not let the system beat it out of you?

BJ:
Well, I was lucky in that I had this big time experience of being a patient myself and coming close to death and having engaged the health care system before I entered it as a student. So I had a lot more experience than my peers of how medicine actually plays out and how the difference between what the textbooks are telling you and the experience and in, you know, in the hospital or an exam room or whatever. So that was a huge leg up for me, going in on top of my own experience of being the son of a woman, of a mother who had polio and post polio syndrome. So I've been around disability my whole life and that experience certainly informed, you know, that helped me. I was never really it was not a big risk that I was going to somehow play into this. Doctor knows everything. Patient knows nothing. Crap I had by virtue of my own experiences in my family and my own personally, I was already I was prewashed, you know, so I knew as I went through the training, I felt like such an advantage. I felt like which is an interesting statement, because you might look at a guy missing three limbs in medical school and see that as a disadvantage in so many ways.

BJ:
I felt like I had a really wonderful leg up excuse pun. So so that's a big. So just knowing that going in was really, really important, as you can imagine. And then more of the of your question, I was just careful in the same way we're saying the medical model is powerful, but it's not to be confused with everything. It's not it's not the only way to see. It's not the only way to understand reality. I had already known that, too, by studying the arts. And so I protected I made sure to hang out with friends who were not in health care as I was when I was a student. I lived a little far away, farther away from campus. I was sure to make sure to protect my nonmedical interests because I knew those were going to inform me staying a good or good human being or something like that. So those are some of the tricks for me. And that meant playing with art, music, getting outside, getting on my bike, doing anything but medicine. But that's still related to the human experience, because I always knew that medicine was on behalf of the human experience, not the other way around.

Gustavo:
That's amazing. As we kind of. You wind down here, I want to be protective of your time question, I ask everybody is what have I missed that you think is really important to talk about?

BJ:
That's a good, big, generous question. Gustavo, let me think about that for a moment. And. I suppose I mean, here's where my mind goes, obviously, there's all sorts of things we haven't talked about, but boy, do we cover some good stuff from where I sit. Big stuff. You know, I suppose I'm tempted. Well, I'm going to say my answer is what's popping to mind now is to make sure to caveat, as you and I are speaking from with some casual with a little bit of comfortable distance from some of the more painful moments of our lives, some more painful experiences that we're we're talking about now, you know, kind of dispassionately. But, you know, just to note. That. This stuff gets really hard, and even if we know it, it should be otherwise or it could be different, like we're talking about all our aspirations here and how to understand things. I just want to note that, you know, no matter how you slice it, even when we get great care, even when we stumble and find a doctor who we really light up with and who understands us all that stuff, just to make a little note here, that it can still be painful as hell, because to be confusing is hell that I just so I don't want to. I guess my point here is I don't want us to accidentally alienate or orphaned the harder feelings, the harder thoughts that are there to no matter what happens. And just to remind each other that the human experience includes disappointment, suffering, pain, no matter how you slice it. Those aren't always a a failing of some system somewhere. They're facts of life. And so the perspective that you and I are sharing now has come from many, many years of wading through all sorts of things where you and I didn't know where we're ahead and didn't know the answer, didn't know anything. You know,

Gustavo:
I just thought of hard emotional labor. Absolutely.

BJ:
Yes. Yes. And in some way, we are reaping the benefits of having gone through those even the ability to sit with each other and talk about these things in an unprompted way. So I want to just acknowledge the work that goes into getting where you and I are. And to note, too, in case any listeners worry that you and I have some secret knowledge and are just forever happy people because we figured everything out. Hell, no, I am I have to I'll forget everything we just talked about and have to relearn it tomorrow. And even when I remember all the things we're talking about, it's still life can still suck. Life can still be really hard. I can be really close to giving up, throwing in the towel, wanting to get off this planet, get off this ride as much as I love it. So I guess my point is just to make a little dog dodgier, the hard stuff, the impossible stuff, the questions that don't have answers, they need to have a place in this mix to.

Gustavo:
They do, and for me. Having. Understanding friends, family, people that I could talk to, that I could trust that weren't going to judge me immensely valuable. I think what you are doing with mental health immensely valuable in that aspect, too, because you are counseling, you are building a community, and you are I think you're holding space for all of those feelings and all of those emotions. And when we talk about it together, it helps. Even when things are shitty, even when things are difficult, it helps them yourself.

BJ:
I love you, Gustavo. That's so nice to hear your brother. Thank you. I mean, that is that is our intention with mental health. And, sir, we're going to miss the mark sometimes, but that is exactly the effect we are trying to achieve. So thanks for feeling it and coming along with me. And I can't wait till our next visit now. Man Yeah, I hope we'll have some more.

Gustavo:
So, B.J., where can people find you? Where can people reach out? How can people learn more about mental health?

BJ:
Well, so obviously the website Mental Health Dotcom is a place to go. And on there, if your questions or that is a work in progress, Sonia and I are building this thing, as you would know, well, on a shoestring. So, you know, we're welcome feedback. And as you and I are talking, we're trying to kind of find language for huge experiences. And so we may not get our language just right. People may not see themselves in our site, but really everyone and everything is well, every issue is welcome here. So have a look at the website, shoot us an email, give us a call. If you're wondering if we want to talk further, we offer 20 minute free consultations with me and there is a place to start. It doesn't cost anything just to kind of see where we are and see if we can help each other. So I'd point you there. We're also I'm on Twitter at at B.J. Miller, M.D., I think it is. And mental health. We are on Instagram, Metall, underscore health and Twitter as well. So those are some places to find us. And I guess I will say one more plug. So I did work on a book, co-wrote a book with my friend Shoshana Berger. And Sonja was our our partner in that, too. And that book is another way to kind of get at some of the things we've talked about. And that's called a beginner's guide to the end. Simon and Schuster published it two years ago now or so, and that's out in the world as well.

Gustavo:
And I'm I'm going to pick that one up. I haven't read it yet. So, look, I the last thing I want to say, I appreciate you so much. I was telling Sonia. Yesterday via email that my first interaction with you was through Tim Ferris's Podcast. and the many, many years ago, and I remember thinking then, wouldn't it be incredible? Just, you know, just to meet just to meet you, just to say thank you. And here we are now, much more engaged, helping each other, learning from each other. And I'm just so grateful that the opportunity came up. And I thank you so much for. For being here, for helping me, for for being a part of this.

BJ:
Gustavo, thank you, brother. That goes both directions, pal. I am thrilled to be your friend and colleague and whatever other words you put to us. So thank you, buddy.

Gustavo:
Very welcome. All right. Thank you so much, B.J..

BJ:
All right. Take care. But next time.

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Helpful links:

• Mettle Health: www.mettlehealth.com

• A Beginner’s Guide to the End: www.abgtte.com

• The Center for Dying and Living: www.thecenterfordyingandliving.org

• New York Times Article by BJ Miller MD: https://www.nytimes.com/2020/12/18/opinion/sunday/coronavirus-death.html

• BJ’s Ted Talk: https://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life?language=en

Connect with BJ Miller MD on Social Media:

• Twitter: https://twitter.com/bjmillermd

• LinkedIn: https://www.linkedin.com/in/bj-miller-md/

• YouTube https://www.youtube.com/channel/UCSCVnFBHqoTKd1xiAHjubDg

• TikTok: https://www.tiktok.com/@bjmillermd

Connect with Mettle Health on Social Media:

• Twitter: https://twitter.com/mettle_health

• YouTube: https://www.youtube.com/channel/UCUDv4J818Sk7lv39gh1GwYA

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BJ’s Ted Talk, “What really matters at the end of life | BJ Miller” received over 12M views (nearly 8M of those views come from YouTube).