This week we talk with BJ Miller, hospice and palliative care physician, public speaker, and now author with Shoshana Berger of the book “A Beginner’s Guide to the End.” BJ has also founded a palliative care consulting company, Mettle Health.
As we note on the podcast, BJ is about as close as we get to a celebrity in Hospice and Palliative Care. His TED Talk “What Really Matters at the End of Life” has been viewed more than 9 million times. As we discuss on the Podcast, this has changed BJ’s life, and he spends most of his working time engaged in public speaking, being the public “face” of the hospice and palliative care movement.
Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, we’ve got a full room today.
Alex: Full room here.
Eric: Pretty excited too.
Eric: Who is our guest?
Alex: Our guest is BJ. BJ who needs no other introduction other than our guest is BJ.
Eric: It’s like Prince.
Alex: Just the BJ. Welcome to the GeriPal podcast BJ.
BJ: Thank you Alex. Thank you Eric.
Eric: And there’s somebody else in the room.
Alex: Somebody else in the room. Anne Kelly who’s a frequent guest host on the GeriPal podcast, social worker with a palliative care service. Welcome back.
Anne: Thank you. Hard act to follow after that introduction for BJ.
Eric: Do you want to give a little intro who this BJ character is.
Alex: So BJ just to give a little bit more is a palliative care physician.
Eric: Rock star.
Alex: Rock star.
Alex: Ted Talks been viewed over 9 million times.
Eric: Nine million.
Alex: Nine million.
Eric: That’s getting close to what this GeriPal podcast will be at.
Alex: I think we might have had like 200 on one of our youtube videos. It’s pretty good yeah. Nine million. Wow, and is a frequent public speaker and has worked in hospice and palliative care and the bay area and elsewhere so it’s terrific to have you with us, BJ.
BJ: Thanks man. Good to see you guys.
Alex: We’re going to start off with a song request, right?
Eric: Yeah. Do you have a song for Alex to sing?
BJ: Yes. Tonight you belonged to me, Alex.
Alex: And you’re going to join me in this.
BJ: I’m going to try.
Alex: Perfect. (Singing)
Eric: That sounds really familiar where have I heard it before?
Alex: I don’t know.
Eric: The jerk.
Alex: Steve Martin.
Eric: That’s right. And Bernadette Peters.
Anne: Well done.
Eric: I got to rewatch that. Well, how, why did you pick that song?
BJ: Because it’s such a sweet little jingle and it goes well with the Ukulele. And I wanted to hear Alex. I wanted to be serenaded by Alex.
Alex: That’s terrific harmony.
Eric: I’m looking forward to the end of this podcast. You can hear a little more of that, a little bit more at the end. So BJ.
BJ: Yeah, Eric.
Eric: You just published a huge book. It’s a pretty big book. It’s thick.
Alex: But it’s huge. It’s getting a lot of press. I saw you on CNN. The other day. Like the book’s title, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.
BJ: Mm-hmm (affirmative) that’s the one.
BJ: Yeah. Well done. Thank God it’s been almost a four year project.
Eric: Why this is like whenever we have somebody here who writes a book and comes on to our podcast, I always think-
Eric: Why did you put yourself through that because it sounds like a really arduous process.
BJ: It’s a little brutal. I mean it’s wonderful and horrible and everything. I mean the impulse was because like we all know, especially clinically you sees there’s becomes pattern recognition. You start to see themes and yes, dying is individual and personal. Absolutely. But there are themes and more the point is you see a lot of people suffering at the end of life totally unnecessarily because they haven’t prepared, because they haven’t planned and because the system has become pretty unintuitive.
BJ: So if you just leave death to chance, well that used to be fine when you would more likely drop dead of a heart attack in the middle of playing tennis. But nowadays you’re going to fade out from long bouts of chronic illness and that takes some preparation. So the idea of like, basically the impulse of the book was like harm reduction.
BJ: Like you see people were death is way harder than it needs to be. So the book was an effort to kind of get all out of information at one place so people had less of an excuse to ignore the subject.
Alex: You know, when I was reading your book that the one line that stood out to me as far as the intro was that you wrote this book to help dying something we can get to know a little better.
Alex: Is that a good summary to?
BJ: Well, okay. So on some level, a lot of the preparation, like I said, is harm reduction. Like you do these things to make things less hard, less crappy on some level. But like, we all know in this work it, there’s also a piece of dealing with things in such a way that life becomes more amazing and more wonderful. And I think that both need to be accounted for. You need to make space for both. And usually from my experience, a lot of the good stuff comes from people who find some way to find a relationship with their illness, with their death.
BJ: And this way they can be bigger than it too. Then they have some agency they can have, they can participate in that relationship versus just be kind of flung around by it.
Alex: You start off the book. Well, so first of all, we should acknowledge that you wrote this book with Shoshana Berger. And could you say a little bit about her and how you came to write a book with her?
BJ: Yeah, so Shosh and I met at IDEO, the design firm where she’s the editorial director. She’s a journalist by training. She’s editorial director at IDEO. That’s where I met her like years ago. There was a longer story. I was actually invited into IDEO to talk about shoes for prosthetic feet. That’s where it all started.
Alex: That’s where it started.
BJ: Yeah, that’s where it started.
Alex: Pretty far from there. But yeah.
BJ: That’s where it began. And that conversation led to discussion about the aesthetic domain and how things look and feel and the sensory experience of stuff and how it can be therapeutic when we were talking about B2B shoes and prostheses, but the extrapolate from there and that conversation about aesthetics led to conversation about my day job and then they got much more interested because they have a health care practice and they were interested in the subject and it seemed like this very ripe taboo thing that was keen that was ripe to be revisited.
BJ: So we kept talking and had very interesting meetings. I didn’t ever know where it was going. It was just kind of fun to be in a different industry talking about the things that we do in our job, in our lives, which seem otherwise dominated by health care. I mean we know this subject is not just a medical one, but we tend to treat it that way by default. So it was just thrilling to be in this amazing office, creative minds whirling around and starting to think aspirationally about what could be different.
BJ: And then that led to eventually that’s when I was at Zen Hospice Project and we ended up hiring IDEO to do a little work on one’s website and other things. And during that project is when I really met and got to know Shoshana better because she was part of that project. And it was very interesting being in that building around that sort of aspirational, creative energy because there’s a piece of you that has to sit there and you kind of can’t help but roll your eyes because it’s, some of it’s just so outlandish and so unrealistic and is so ungrounded by the realities of dying.
BJ: So I had to be sort of the party pooper in the room oftentimes and trying to bring it back down to earth. But then again, I also think we ignore the aspirational part at our own peril. Why couldn’t it be better? Why couldn’t our systems be better designed? Like I don’t think we could mandate a wonderful death like that would be setting people up for all sorts of disappointment. But right now we sort of mandate a crappy death.
BJ: Like I’d like to get that out of the way so you don’t necessarily fall into a junky death. But anyway, back to Shoshana. So we, she saw this gap between reality and aspiration and she made some comment about her dad’s recent death and all the regret she had. And that changed the conversation very nicely. And she, and I got… So then that’s when I kind of got turned on to Shoshana’s mind and then she eventually asked me about the book.
BJ: I think we all know that there’s a use for a book like this in the world, but her asking made a big difference. I wasn’t tempted to do it otherwise. And I never would have written a book by myself. But as a non-clinician, someone who had been a caregiver, someone who was washing yourself in the subject from a different angle, it seemed really smart to have a clinician and a non-clinician working on this subject. So that’s why we ran with this.
Alex: That’s great. So who is this book for? Like who is your intended audience?
BJ: It’s written, I’m on some cheeky level for everyone. But more practically, more realistically speaking it’s written, the sensitivity of the language is geared towards someone who has either gotten a diagnosis themselves or something’s up, something’s going wrong and they’re in a vulnerable place. I mean, the tone is meant to be, to speak to them specifically on the next rung out of course is their caregivers or family members or loved ones. And in so many ways that are interchangeable during the conversation to one or the other.
BJ: And then from there, the third rung out is just us professionals and interested public lay people who just want to plan or neurotic or whatever else. So that’s the way it’s.
Alex: And I see what you mean about there’s a need for this book. This book is by way of over view you’re interested to hear what you have to say. My reflection upon reading it is that it’s just filled as you say in the title, practical advice, practical advice. This is the most practical guide like guide to living and dying with serious illness targeted primarily for people with serious illness but also for their caregivers and then other health professionals. There isn’t another book like this out there. Is there?
BJ: Not to I mean, there are there’s similar books. Steve Pantilat’s book has it not a terrifically different table of content on some level. Katie Butler’s recent book, The Art of Dying Well there’s been a rash of interest in the subject and more stuff coming into the public domain. But there isn’t a book quite like this that’s mixing across issues and subject matter and is trying to speak to this common denominator among us, et cetera. So no, there isn’t really one.
Alex: And I think the practical part of it is what stood out to me. Certainly their components of practical advice in those other books. But just from the get go like in this book like well how do I clean out my house? Like how do I leave a legacy? What can I leave behind and who, how do I arrange for trust?
Eric: Do your kids really want your stuff?
Alex: Yeah right. And Facebook should I post about this? My illness on Facebook and what’s between a mortuary and a funeral home.
Anne: Well it gets so specific that you wonder how did you guys avoid big blind spots in the kinds of practical information to include?
BJ: Well, we’re not sure if we did that’s why I’m so now it’s getting sort of tested in the world as it actually, is this theory going to actually prove to be useful to people? And what did we miss? I mean there was, it’s a terrifying prospect because you know the subjects huge and trying to find what’s going to be meaningfully relevant content to everybody or most everyone in this our denominator, but also the emotional content. How do you… One of the big challenge was trying to bring emotion into this plane too.
BJ: So people didn’t feel that this was dry or didn’t feel unseen or unheard. But as you know, people are in different places emotionally some like every time that we’re tempted to say, “Oh this is just going to be awful and you must feel so bad, it must…” Like not necessarily. And then all of a sudden you’ve prescribed the person to feel crappy. So it was really tricky finding the right tone, the right tenor, the right amount of content.
BJ: I was tempted if I’d written up by myself, it had been longer and more complicated because I’ve been trying to capture everyone, every exception to every rule. But at some point you kind of have to let that go. And, but to your point I, we, this is our first edition. Hopefully there will be a second one. And we’re inviting a lot of feedback from the public. So hopefully they’ll let us know where our blind spots are and then we can fix it. But it was, we had to start somewhere. It was terrifying but kind of exciting that way.
Alex: So I can imagine as you wrote this, you, you probably learned a whole lot because I learned a ton just reading this book as a palliative care provider, like thinking, oh yeah, these are some things that I should know about and think about and help people. Do you think having written this and putting it together, do you feel like you’re a better palliative care provider now? Like thinking more holistically.
BJ: Yes, for sure. And that, yes, just expanding the subject matter as we know in the field, there’s plenty to think about just from our medical and nursing social worker chaplaincy angles. There’s plenty. But if you’re really trying to blow up this subject or really not blow it up. So if you’re really trying to dig into the subject of suffering and quality of life and meaning, I mean, geez, the ways we this should be a much bigger table.
BJ: There’s way more to that big endeavor of being a human being than just the medical model, which suggest, so yeah, it expanded my own sense, my own purview of what’s relevant to the subject. And then the act of trying to articulate it and to actually trying to write it out and put it on paper, it also force my brain in a way that I think was good. I don’t know, it’s actually, there’s like a hangover. I’m trying to wash it out of my system because writing to this average nonperson person that’s not right in front of me whose issues aren’t right in front of me, Kind of did weird things to my brain and I feel like I need to take a long internal shower.
Alex: Yes. So speaking of changes you writing this book and your Ted Talk is sort of framed around your personal life experience, particularly experience in college where you experienced this accident where you lost part of your arm and parts of both legs. And for our listeners you should go check out the Ted Talk if you want to hear more about that. But I wonder if you could reflect on how that Ted Talk has changed your life.
BJ: Well, it’s a great question Alex, because honestly, for me personally it was a huge difference. It changed my life in all sorts of ways professionally — for example, I as a non author would never have gotten a book deal. Shoshana had written before and that certainly helped us, but I would not have gotten a big book deal with the publisher like Simon Schuster if it hadn’t been for that Ted Talk.
BJ: And since that Ted Talk came out and it was doing well, that’s what triggered me to leave Zen Hospice Project and try really to lean into this public thing, trying to actually bridge our profession with the public on some level, which is a lot of work to be done there. And it was thrilling and exciting, but also totally unknown. I’m just kind of flailing around.
BJ: But the Ted Talk led to I mean it’ll last three years I’ve really made my living primarily by public speaking and that’s all because of the Ted Talk. The book deal, all because of the Ted Talk, et cetera. So huge changes in my personal and professional life.
Alex: Right. And it’s like BJ is like as much of a celebrity as we get palliative care. He is celebrity, right? Like so it’s awesome. It’s great.
BJ: I think, I hope.
Alex: Yeah you are a celebrity.
Eric: I got right behind you as a poster of you, BJ.
Anne: If you could sign that before you leave we would appreciate it [laughter].
BJ: I’ll sign it.
Alex: I mean it’s great. Like we all were in med school around the same time, right? We were UCF. I was ‘O2.
BJ: I was class ’01 but then you left ahead of me because I took that year off. So you are my boss and fellowship if you remember.
Alex: Oh yeah.
BJ: You were my attendee.
Anne: He remembers.
Eric: I can’t believe we were all in med school at the same time, at the same place. And none of us knew each other.
BJ: Wait a second you were in UCF.
Alex: You were in ’02 as well?
Alex: I know isn’t it weird.
Alex: I met BJ in med school briefly. We didn’t know each other that well because I was joint medical program and I took a year off to like travel the world and whatever. But yeah now like we knew you when.
Alex: Or not.
Eric: Or not.
Anne: Whether or not he knew you is the question.
BJ: In fellowship is where I really got to know Alex at all and to spend some more time with him.
Alex: Yeah so it’s great. It’s terrific for the field and I’m glad that there’s so much like thirst and energy for this. For somebody has engaging as you are to be the voice of palliative care with the community. And I think it’s a tremendous service that you’re offering.
BJ: Thanks Alex.
Eric: I was wondering, thinking about your book, lots of great chapters, was there one chapter that you’re kind of most excited to write or like it gave you the most energy to write?
BJ: Yeah. For me, the coping chapter, which was, it was really all about reframing fear and that was the most fun for me because that’s where I personally just most interested in this sort of philosophical issues, conceptual. So how do we frame ourselves in the world? And so that was the most fun for me to try and get that out. And then maybe the next one up would be the love, sex and relationships chapter.
Alex: Can we get into that one?
Eric: Knock yourself out.
Alex: Let me just flip to it here. I remember there’s one story in there that you kind of start out with. Oh yeah Eric’s giving me the get closer to the mic symbol.
Eric: Yeah proper mic position Alex.
Alex: It’s hard when I’m trying to find a flip to. You start off with a story of a man who dies while receiving oral sex from his wife.
Eric: And if there are any kids listening – ear muffs
Anne: Where were you 30 seconds ago.
Alex: We should have an announcement at the beginning about the rating for this-
Anne: Will go back and add that.
Alex: The following episode is not.
Anne: Will add that.
Eric: This may be inappropriate for small children.
BJ: Will send you some video clips.
Alex: But in the hospital. Right. And then you clarify just because it’s important to clarify that he did not die from the oral sex. He died from his underlying disease, but just-
Eric: Whoa, now I’m awake. I’m really… This is amazing. This chapter the sex-
Alex: Sex and death is not something that’s generally not talked about. Relationships, sexuality near the end of life. Tell us what is…
BJ: Well that’s like back to Eric’s question earlier. Like did it expand the purview of how we think about our clinical work? Absolutely. Like I don’t know about you guys, but I’d often generally don’t think to bring up sex and we’re not really train in that. So my mom uses a wheelchair. She had polio and I’ve learned from her.
BJ: So I used to go to doctor appointments with her when I was a kid and I noticed this and she pointed out to me like would not, first of all, the exam room was not wheelchair accessible. Like how you, you can’t even get your own patient into — that’s just crazy talk. And that’s another point. But also they didn’t have exam tables so the mom couldn’t get up in stirrups. And so they would just forgo the gyn exam and they also just sort of assume, well, you’re in a wheelchair, you’re not having sex.
BJ: That was the assumption. And she had a child with her. Obviously she does. I mean there’s the point was that the whole subject just gets completely, not only ignored, but it’s, there’s a little bit of offense in there. We presume that someone who’s sick couldn’t be a sexual being. Like what the hell? That’s, this is fundamental rudimentary. It’s like assuming that the person doesn’t eat or sleep and this is rudimentary stuff that just gets somehow forgotten. So it was very fun to open up that topic. Sorry I’m rambling.
Alex: No, I kind of loved it. Because like when we think about the big taboos that we don’t talk about in our culture, death and sex are like-
BJ: Right up there.
Alex: Right up there.
BJ: Yup. And they’re carnal. They’re base, they’re visceral. And it was fun to make that link. This is not abstract stuff. This is bodily stuff. And it’s really nice to work from the body out.
Eric: It’s okay to talk about both of them. Like because they’re important.
BJ: It’s actually maybe even very healthy to do so.
Alex: Right. And I liked the way you say from, for many people who are living with serious illness, like intercourse is not possible because either like – forget intercourse – so much this is about intimacy and finding ways in which you can be intimate with one another cuddling and touching and other ways that are aside from intercourse itself.
Alex: And I have to say, I have never admit this now. I don’t think I’ve ever talked to a patient about this topic. I probably should have, that probably should have been opportunity. There probably were opportunities, but I have not done it. Like how do you bring it up with a patient?
BJ: Well, I think for me, I just oftentimes, well it sometimes as it happens, like patients will lead us. There may be the couples in the room and maybe you can tell that there’s a block or that they’re distant or they’re not sure how to touch. Sometimes you can just feel that there’s a sensory thing missing. And sometimes they’ll kind of lead you to it by talking about how things are at home or something like that.
BJ: But for the most part, it usually is from my experience, especially since we’re going to book, it’s simply something like, “Hey, you know, I’ll just prime him to say, “This illness affects every part of us in all sorts of ways. And sometimes we can. And we, in clinic, we’ll gloss over all sorts of very important things. Like for example, how’s your sex life?
BJ: Now is there a sex life? And that alone it’s a couple of times I brought that up with patients and it instant tears, like instantaneous tears and the patient and or the or the loved one. And it’s really moving because there the tears are from, thank God, now I get to talk about. Thank God someone’s asking me about it and I hadn’t let myself think about how much I actually missed that touch. So anyway, it seems like a pretty easy it’s been pretty easy to, to prime with people much like death because actually the feeling is, yeah, denial sure, we’re in denial, but actually maybe that’s a little overplayed. Maybe we’re all sort of dying to talk about these things. We just don’t know how or whether it’s safe. That’s been my experience.
Anne: And it sounds like that priming sort of relieves the patients or their families from the burden of having to take the leap to bring it up to the provider first.
BJ: Yes, exactly. Because they’re, again, they’re not sure if it’s safe, if it’s weird or if it’s all right. We all have all sorts of hang ups on the subject. So you as a physician can cut through that so nicely. And just by virtue of practically bringing up with eye contact, you’ve just normalized it for someone and made it okay. Just by asking,
Eric: I wanted to ask about this chapter on code status and in particular you have this wonderful phrase, I don’t have it open in front of me, but you talk about how code… We usually ask about code stats. You know, if you were to your heart were to stop, would you like us to attempt to restart it using electricity, chest compressions and then you say, “Of course in like what foolish person wouldn’t say yes to that. And you say the better question is… What is the better question?
BJ: Well it’s like, and I learned this from David Weissman actually at the Medical College of Wisconsin. That’s where I got, that’s where I was in my, did my internship and did up an elective empowered of care with David Weissman. That’s what really turned me on to the subject anyway. I learned from him, like he would just sit down in the bed and say, “So when you die you’d frame it very often. Not like when your heart, no, not this clinical. Sometimes he would say, “So when you die, do you want us to help you make sure you’re comfortable as you move through that?”
BJ: Like that’s a very different way of approaching the subject. That’s a very direct way and no one and that always went very, very well watching him do it. At first it was shocking to see him like, “Whoa, did he just say that?” But to a person, every patient appreciated it and it got a different answer.
Alex: It’s amazing. We should study that. I wonder if David Weissman ever say that. Probably not, but I don’t. That’d be amazing. Right? You asked this question that’s targeted towards the same content because it is true that when you’re dying or very likely to die because 11%, as you quote in the book of people who undergo CPR in the hospital survive to discharge and the rates approaches zero for people with cancer and organ failure and dementia and other serious diseases.
Alex: Like that’s a true statement. When you’re dying or when you’re nearing very likely to die. Do you want us to treat you with keep you as comfortable as possible throughout the-
BJ: And guide you through that process or be with you, company through that process and make sure you’re comfortable. Something like that. Just to sweet sort of, we’ll be there for you in this way. And I tell you, man, the difference a word makes so saying when you die versus if you die, that ride out of the shoots changes the dynamic and you’ll get a different answer because then it’s, that’s taken as a given, which of course it is and it sends a very different signal to the patient versus if you die, if we screw up or if something goes wrong and you die that’s not really accurate.
BJ: And it sets the listener up in a very different way. And then you guys, we all know this, but the difference, a word or sort of a framing makes in this whole enterprise is stunning. Like I would love where are the linguists and then the communication professionals all this. I would love to study the difference a word can make.
Alex: Wouldn’t that be amazing if this became the norm across hospitals in the United States for how we asked about code status of patients who are had serious illness. That’d be amazing.
Eric: Wow. You got to study this Alex.
Alex: That’s good. Yeah. Research topic. There we go.
Eric: Good idea. Now we need to one of the fellows, take it on.
Alex: I asked earlier what was the chapter that you were most enthusiastic about writing. What was the chapter that you struggled with the most?
BJ: Well, so I just sent me back up for the way the mechanics work in the book. So Shoshana and I both, we wrote half the book, roughly each of us or primary author on half of the book. And you can probably pretty much tell which the from the table of contents of which one was whose primary chapter. But so, and then we cross edited to kind of smooth out the narrator and smooth out the voice. But that was our process.
BJ: Each of us was primary author on half the book and then we cross edited. So I was terrified. Like I would not have begin to know, like I was mostly scared of Shoshana’s topics because I didn’t have any primary experience. It’s very, for me, so much of the enterprise was looking inward and drawing from situations that I had seen and been part of or whatever. So it was an introspective process. Whereas for Shoshana it’s are secondarily source journalism basically she’s co-leading information from disparate sources and bring it together because the research enterprise very different.
BJ: And so that I just, anything that was not from primary experience I found really, really difficult period. I think the chapters just waiting through, but more specifically the one can I afford to die? So the brutality of costs and all this and how that needs to be another thing, another issue that was sort of like sex, it doesn’t get brought up but it dramatically affects a situation. That one was like a heartbreaker to kind of think through and work on.
BJ: The paperwork chapter, just trying to write out, trying to make sense of all the forms that we have to wait through when they don’t really make sense. And trying to put that in a way that was in some way interesting or useful was really hard.
Alex: And there was some that I learned about what was it the ethical-
BJ: Ethical will.
Alex: Will, what’s an ethical will.
BJ: So, yeah, so we also in advanced care planning, we know advanced care planning and we know advanced directive and we know will’s on some level, I think we all know these are sort of conventional things. And I think more of us are aware of legacy work. So letters, writing letters to unborn grandkids or whatever. The legacy letter writing kind of efforts. I think most of us are aware of that work growing but a big piece of legacy is there is this tradition, this thousands of year old tradition. I can’t remember how far it goes back, like old testament kind of stuff.
BJ: That unethical will be whether it’s written or an oral tradition. It’s what you so sure there’s the stuff you pass onto your kids or not, but what messages, what lessons learned do you want to convey to people come after you? That’s the sort of at the heart of an ethical will. What like your persona, like your feelings, your view on things, the lessons you’ve learned, how do you pass those on and the ethical will is a vehicle to do that.
Alex: Anne I think you wanted to ask about the illustrations.
Anne: I did thank you Alex for that segway. I did want to ask about them. I noticed that some of the illustrations help and sort of prompt someone to feel a little bit contemplative when they look at them and others help the content feel a little bit more lighthearted. And I thought it was and I really liked them. So I was curious how you guys came up with.
BJ: Yeah, thank you. And it’s a super important piece of the book. Like the Marina, a woman named Marina Lewes is the illustrator and she’s awesome. I mean she does a beautiful work and all sorts of different areas. So Shoshana and I, when our first task was to find the right illustrator, we knew this book needed to be more than just a bunch of words on paper because it wasn’t, this is not, it’s only a piece of how we learn and it doesn’t convey nearly enough.
BJ: So we knew that there needed to be something visual and we knew it shouldn’t be photographs. And then doodles have a way of no matter serve who you are, what, where you’re from, you can kind of find yourself in a cartoon in sort of a magical ways. And an early prompt with Marina was like an early heroic book that we drew from was you guys probably know this book from your father’s sock drawer. If you’re like me, which is The Joy of Sex book. I first saw that as kids.
Anne: Check your sock drawers.
Alex: Check your dad’s socks drawers.
BJ: Do you guys know this book? Have you seen this book?
Eric: I’m familiar with that book?
BJ: No. Oh, go look it up. It’s a, it’s a classic.
Alex: I’ve got some reading tonight.
BJ: It’s from the 1970s, and it’s all this, these amazing sketches. I mean, they’re like teaching people about sex through these sketches. You can imagine that’d be much more useful than words on some level. But the sketches were just so plain and to the point and anyone could find themselves and there was just a really good example and there’s tons of white space around it. So those were very important to us. And as you’ve found, and like it’s not, the doodle doesn’t, just isn’t redundant to what the words are describing it.
BJ: It’s meant to evoke from a different part of your brain and make you contemplate or see the subject from a different angle. It’s meant to be additive, not just duplicative to the words. And I think Marina did a pretty darn good job and I think that’s one way that books maybe a little different. I will just one say one more thing that the prompt to Marina and to the publisher and it’s why we were able to get more pages with bigger print was this we use this phrase a lot with everyone we worked with, which is the book needs.
BJ: It’s about essentially about palliative care one way or another and that the book itself needs to be Palliative, holding it, the paper. The design needs to be itself reassuring or somehow pleasant, somehow pleasing that the book itself would be an object that’s palliative.
Alex: Yeah. Like, I thought the illustrations really stood out. And the idea that it made me think like why did they, like for the grief chapter, I remember it was a dress on a hanger and I thought, huh what am I supposed to be taking out? And then I like searched the grief chapter for, are we going to talking about a dress on the hanger? But then I guess like, wait, maybe that’s like not actually like, can you tell me about that one?
BJ: Yeah, not literal. It’s meant to sort of be evocative. And for some of us, I think a lot of us get triggered in our grief. When you see… I recently came across, my sister died years ago. I recently came across an old sweater of hers and what was so wrapped up in her sweater, I mean, I, there was, I could still smell her on it. That was of, and to see it without a body in it. And it just it was evocative in ways and it got, it’s almost like a sense of smell that’ll cut to all sorts of things and transport you places that words won’t.
BJ: It was similar like, so that image is just meant to evoke a, this sort of haunting this of an empty dress that something was someone’s gone there, but also these touchstones and how grief shows up in these really weird ways. You see something that reminds you of the person loss and it can be just about anything.
Eric: You know, it reminds me of a couple things. One is at the end of Brokeback Mountain when the character finds the deceased characters shirt with the bloodstain on it from when they’d wrestled 20 years earlier and just talks to it and holds onto it. And the other is after my dad died, I remember going to his closet and opening it up and just hugging his clothes.
BJ: That’s beautiful.
Eric: The smell and just the, as you said, it was like the closest I could get to him.
BJ: The material, the visceral.
Eric: And the smell.
Alex: That’s something I really liked about this book too, like that just the feeling like holding it, the weight, the colors used, the illustrations. It was part of the book. It felt very well kind of the whole thing was there was a whole, it was designed well.
BJ: Thanks man. You guys are really, this is exactly what we would ever hope to hear. Thank you.
Alex: I wanted to ask about, so you started off today talking about how our system is broken and we’re steering people towards these terrible deaths and you make a really strong effort in the book to not only challenge people to change their behaviors themselves, but also to think about their own goals and values and what sort of treatments might align with those and some terrific prompts so that patients and caregivers can push doctors and other healthcare professionals about is this, what will this treatment do for me?
Alex: What can I expect realistically? What are the harms of this treatment? What are the… I just love those priming sort of questions activating patients. And I wonder if you could speak a little bit more about that component of the book.
BJ: Yeah, well two things. One is first for starters, one of the another challenge in the book was because we know the healthcare system colors this so much and I’m sure all of us have our critiques of this health care system and know how it could be different and better. And it’s one of the crazy making things about our jobs. But we actually had to cut, we had much more critique of healthcare in here, but we cut all of it because again, this book is to meant to help people now deal with what they have now, whether it’s an illness or a family structure or the healthcare system, whatever it is.
BJ: Like this book is not going to, is not a criticism of the healthcare system per se. We had to bite our tongue and that was deliberate. But okay, so that’s one point. And the second point though is yeah, I think if you try to get folks yourself and your patient’s family into sort of a ballpark into a frame of mind that evinces other information. So when you start talking about what they love or what they miss or things like that gets there, that primes the mind to think in a certain way and sets a nice open tone of what you clinician are welcoming into this mix, which should be just about anything.
BJ: So these little sort of disperse, sprinkling the reader with questions to get them sort of in the mood in the mindset. Because most of us in our day to day grinds aren’t thinking about these things and it does take a little bit of a shift. Does that answer your question Alex?
Anne: It’s so useful because so many of us, we don’t know what we don’t know. So how do I know what the right questions are? Because this is uncharted territory. It gives them a little bit of a cheat sheet.
BJ: And that’s exactly right. I think what we’re all looking for on any side is some confidence that things are as good as can be. No one’s going to say this is going to be easy or perfect or hopefully they’re not going to say that. But what I think we’re all striving for is a sense of confidence that things are as good as can be. And that is a very murky, unclear note to hit. But you kind of know it when you feel it.
BJ: But then I think also sort of practically, sometimes it’s a means to some basic translation moments. Like when we use the word treatment, I mean I think it’s I’ve, this one’s a magical one. I’ve talked to them when I’m giving public talks, like just encouraging a patient, a person to ask their doctor, “What do you mean by the word treatment?” Is a huge opener because we move that one around.
BJ: Usually we mean life extending treatments in contrast to palliative care kind of treatments. But we keep using the T word in there. So it’s confusing as hell. And if a patient asks a doctor, what do you mean by treatment? That’s going to be a really good challenge for the doctor to find, “Ooh, what do I mean by that word?” That’s my favorite kind of real easy tell.
Alex: And we need both in order to change the system. And we need both people who are trying to train doctors to have better communication skills, like we have Wendy Anderson on many other people, but we also need to activate patients to, “Hey check your doctor, check them.” Because most docs aren’t going to receive those communication skills trainings as hard as we try but there, if we can get all patients out, they’re all people, caregivers, people to ask these questions and check their doctors, we may actually have bigger change.
BJ: That’s what I, that’s my I wholly ascribed to that theory. That’s another reason to sort of reach out into the public these days. Because I don’t think we’re going to get there left to our own devices and inside of healthcare. And if we keep guessing what our patients want and they’re not activated, engaged, it’s, we’re never going to get there without our patients obviously.
Eric: So kind of from the bigger perspective, are there things that our listeners can do to make those, that reach out to the public or to make that larger change or the system, not just for the individual patient but either shifts what we’re talking about or, yeah.
BJ: Well, yeah, I mean I think you guys are doing it with this podcast. I mean, here’s one example. I mean, I think just the subject or really is it a singular subject? This is a suite of subjects basically of what it means to be a human being. I don’t know how else to put it. This human condition, we suffer, we die, we have joys, we have bodies. That seems to be the sort of our subject matter really. And that is freaking huge.
BJ: So when I say the subject, I mean it really is a suite of subjects. And I think what’s very useful if we all believe for our sake as clinicians, as well as our sake for our sake as patients and loved ones, et cetera for our sake as people. We need a lot of minds thinking on this subject from many different angles. So you have to kind of lay out a lot of on ramps for people. For some of us it’s the clinical work that gets us, brings us there versus some of us that needs to be a personal experience.
BJ: For some of us it’s philosophy, thinking about existentialism, for some of it’s religion, some of it’s financial. One of the exciting things though for our field and for the subject matter, so we’d have subject matter is you can feel like all roads are pointing this direction. You can be interested in the subject just because you’re a bean counter and wanting to save money that would point you in the same direction we’re looking.
BJ: You can be interested from an ethical point of view, a social point of view, a personal point of view. But you just name it. So I think we just need as back to your questionnaire for all of us in this field, there’s the work we do in our day to day sort of jobs with patients and others. But through your research, through how you teach, how you show up yourself, do you hide your own suffering? Do you share with your team when you’re going through a hard time?
BJ: Do you reach out to your neighbor when you know he’s depressed? I don’t know whatever it is, but I think on some level, each of us can do a lot by kind of living out loud a little bit more when it comes to our own vulnerabilities and we can model things as clinicians for people, but also we can teach in different ways. You can bring your, the things you love in life into the way you teach your medical work anyway. I think the idea is just to broaden the subject or the subject is broad.
BJ: We keep reducing it. So I think the idea is for us to kind of like be in touch with how big, how uncontrollable, how much larger than ourselves as subject is, and then that kind of opens the door for us to bring all sorts of other things into the mix.
Alex: That’s profound. That’s great.
Alex: We should wrap it up. Any last questions or anything else that you wanted to make sure you…
BJ: No, no, that’s great guys. I mean this we can talk for hours.
Alex: I know we could talk for hours.
Eric: How about we sing for a little?
Alex: Yeah. Let’s run it back from the beginning. Let’s do the whole thing.
Eric: You’re going to do the whole thing.
Alex: We’re going to do the whole thing from the beginning.
Eric: Anne you’re going to join in the distance?
Eric: We’ll see.
Anne: We’ll see. Everyone’s waiting in suspense.
BJ: Well, that is my favorite thing about death by the way. It’s like, I don’t know about you guys, but the fact that either even if you do all your homework, you’re going to die. If you do everything right, you’re going to die. If you don’t do anything right, you’re going to die. And sort of frees you up to try and not worry so much about making an ass of yourself. At least that’s what I tell myself.
Eric: That’s great. Thank you BJ.
BJ: Thank you.
Eric: Here we go.
Alex: (Singing). I kept on waiting for somebody to bring back a Saxophone. What did you bring?
Eric: A trumpet.
Alex: A trumpet…I should go back and insert it into the podcast [laughter].
Eric: Oh, thank you so much BJ. Thank you so much for joining us.
BJ: Thank you so much this is nothing but fun.
Eric: Great show.
Alex: And a big thank you to all of our listeners. If you have a moment, please share our podcast with your friends and family, and take a moment to rate us on your favorite podcasting app.
Eric: Until next time, bye.
The book he and Berger wrote is filled to the brim with practical advice. I mean, nuts and bolts practical advice. Things like:
- How to clean out not only your emotional house but your physical house (turns out there are services for that!)
- Posting about your illness on social media (should you post to Facebook)
- What is the difference between a funeral home and mortuary
- Can I afford to die? How much will it cost?
We focus our discussion with BJ on his reasons for writing the book, sexuality and serious illness, and priming people to check the instincts of a medical system that favors aggressive/intensive/invasive care and crappy deaths.
And BJ came up with some nice harmonies to “Tonight, You Belong to Me.”