Solving For Joy

Bob Macauley (00:00)
in the medical profession. First of all, we're fix it people. We like to fix things. also, I tend to think that we're optimists. We keep trying. We keep trying to come up with the best possible solution.

And I think that's where joy comes in,

Chrissie Ott (00:14)
podcast frames joy and we talk about joy. you know, definition is that it's a combination of meaning, alignment and delight. And it...

ranges from the mundane to the profound,

Bob Macauley (00:28)
So how do we find these moments, these moments of meaning and connection and fulfillment in the midst of an unjust and unpredictable situation? And how do we hold onto those

Chrissie Ott (00:42)
You're listening to Solving for Joy. I'm your host, Dr. Chrissie Ott, a multi-boarded integrative physician and professional certified life and career coach.

Chrissie Ott (00:52)
podcast is about joy, what it means, how we find it, and the creative ways people are solving for it in their

Chrissie Ott (00:59)
own lives.

I'm so glad you're here.

Chrissie Ott (01:03)
Hello friends I am honored today to be joined by the one and only Dr. Bob McCauley, who smirks and giggles a little when I say that. No big deal. He's kind of, you know, one of the pillars of ethics and palliative He's one of only a few hundred pediatric palliative care.

Bob Macauley (01:14)
You

Chrissie Ott (01:26)
physicians, pediatricians, specifically in the country. And he is also an ordained Episcopal priest, multiple divinity degrees and a master's in fine arts writing fiction, and has just released a book that is actually groundbreaking in that it is breaking ground being the first to center the stories of children receiving palliative care. I have had the good fortune of

clinical overlap with Bob for a number of years, which I count as one of the beautiful good fortunes of doing the clinical work that I get to do in the world. this is an opportunity for me to tell you, hopefully not for the first time or the last that I am better because I knew you.

Bob Macauley (02:18)
That's very kind, Chrissie, thank you. It's a delight to be on your podcast and right back at you in terms of my appreciation for the opportunities we've had to work together and to get to see the amazing work you do.

Chrissie Ott (02:30)
Hmm, I received that as very high praise indeed coming from my friend, Dr. Bob McCauley. Thank you. So, you know, our podcast frames joy and we talk about joy. ⁓ you know, definition is that it's a combination of meaning, alignment and delight. And it...

ranges from the mundane to the profound, as do many things in our work. And it may not be intuitive to a casual listener that we're going to weave joy through care for children, we are gonna do that.

And I'm gonna start by asking you about a recent tiny little joy, something that has just brought you a bit of delight and pleasure in this last.

recent period of time.

Bob Macauley (03:25)
One thing immediately comes to mind. So one of the kids I talk about in this book was a baby when I knew her named Cora. And she taught me a huge amount about the assumptions that I was making and some things that we used to teach students in medical school, like when I was in medical school that no longer were true. And because of the fierce advocacy of her mom.

Chrissie Ott (03:34)
Huh?

Bob Macauley (03:51)
to fight for her and give her every chance. I learned a lot. think people around me learned a lot. And the reason that she came to mind is that this was 12 years ago that I got to know her when she was born in Vermont. Her family subsequently moved to Iowa and last month her mom ended up going to a family function here in Oregon. So we got together for.

brunch and I hadn't seen her in almost 12 years. And I had sent her a copy of the book. We'd obviously talked a lot about it because all the patients that I was still in touch with their families that I wrote about, they were part of this. And so we had this wonderful opportunity to reminisce together. And Cora is now 12 years old and has a little sister and is still defying expectations. And it was an utter joy to be.

with her mom, whose name happens to be Joy.

Chrissie Ott (04:48)
That is perfect. I love everything about that. And to catch listeners up who haven't had the pleasure yet of having their hands on your book, Cora was born with Trisomy 18. historically, habitually, we are taught that that is a genetic mutation incompatible with life or long life. after she taught you that that teaching was insufficient, you taught others that that teaching

was insufficient and we in fact have cared for a baby with Trisomy 18 together. And all of that is, it's just something to behold, isn't it?

Bob Macauley (05:29)
is.

Chrissie Ott (05:31)
One of the things that I feel comes right through in this book and something that I know about you is that you speak what's truest you can. And it sounds like I learned to a new extent in this book despite risk and consequences, know, interpersonal, professional, you detail some difficult professional relationships.

in the book, which I think was so brave. And as somebody who has been working in physician wellness and coaching physicians for years now, I see that as such a common theme. It still surprised me, honestly, because I think so highly of you and I know the caliber of your communication and presence, There's a part of me that feels a little bit shocked ⁓ that somebody would

malign your motivations and intentions. And you know, that probably highlights that I have some pedestalization in my admiration for you fondness. But it is what I felt as I was reading this. And so my heart goes out to you in that experience and ⁓ really unites with many highly performing,

individuals who have faced similar sort tall poppy syndrome experiences where there is...

rather than support at their growth and exploration. I wonder if there's more to contextualize that with here.

Bob Macauley (07:08)
Yeah,

I appreciate that very much. I think a couple of things come to mind. So one of my favorite quotes, which I quote in the book is from Rita Mae Brown, who said that good judgment comes from experience and experience comes from bad judgment. you know, maybe you're just catching me at a very experienced part of my life as a result of bad judgment used in the past. So there's that. ⁓ I also think that ⁓ one of the other quotes in the book is from Maya Angelou who said,

Chrissie Ott (07:22)
Thanks.

Hahaha!

Yeah

Bob Macauley (07:37)
something to the effect of, you know, people won't remember what you said or what you did, but they'll remember how you made them feel. And so I look back and I'm not the first person nor the last to have workplace conflict. know, like anyone who's had a job for a while probably has had somebody, they're like, I don't get along so I'll go to that person. And it's always a two way street. So my hope in the book is not,

that I portrayed myself as like, did everything right. No, this person's not a good person. We didn't work well together in a certain situation. And part of my task, I think, is to try to figure out what I did, whether intentionally or unintentionally, in order to create that situation and how I could do better in the future. And not to be all Socratic about it or anything, but it feels like I'm saying more and more often, I just don't understand.

over and over again. think I probably thought I understood more 10 or 20 years ago. Clearly I didn't, ⁓ assuming I just haven't forgotten a lot of stuff in the meantime. So I think there are things that I wish were different in the past and part of my journey has been letting go of those things and not really being able to completely explain why things were the way they were, even though for some strange reason I still try.

Like you would think, you know, given the work that you do and I do and caring for kids who are facing challenges that they in no way deserved, why I'm still trying to come up with reasons, eventually maybe I'll just give that up. A wiser person probably would have given it up long ago, but I'm still searching.

Chrissie Ott (09:04)
Yes.

It's hard habit to break.

Bob Macauley (09:25)
Yes.

Chrissie Ott (09:27)
I think you couched it in no uncertain terms as a two-way

One of the marks of a beautiful memoir is that the author grapples with something important and has it coming to terms, which you.

you you define coming to terms in a very specific way the end of the book, which I really appreciate. And, you know, not too many spoilers, but there's a sort of climax in the book where you're faced with two blank pages, which I loved and could not have, you know, like how perfect was that? Will you tell our listeners a little bit what that two blank pages was about?

Bob Macauley (10:07)
Sure. So ⁓ as I, in the book, was facing a fair amount or maybe more than a fair amount of loss in terms of the patients I was caring for. And then in addition to that, the very sudden and unexpected death of my best friend. ⁓

I was grappling with what that meant. And especially coming from a background of faith, as you mentioned earlier, I'm also an Episcopal priest. And so people would sometimes look to me to help them understand stuff. And so I built up to this moment in the book where I said,

I'm faced with loss that I can't explain. How do we understand that in the context of a parent losing a child? How do we understand that in the context of a loving God who...

purports to care about us and has the potential to intervene and clearly did not in certain cases. And so I built up to this moment where I said, I seem like the perfect person to ask this question to. Like I am an Episcopal priest. I'm a pediatric palliative care doc. Heck, I even wrote my master's thesis on the problem of evil. And I said, exactly, all that stuff. And I said that after all of that, this is what I've come up with. And then I left two pages blank. ⁓

Chrissie Ott (11:18)
Okay. Clinical ethicist. Yes.

Bob Macauley (11:29)
And it was my way of not just glossing over it, to not just say, I'm not sure, or here are some ideas. But I think it required a real stop. It required, my hope was that the reader would be like, wow, there's blankness here. There's emptiness here. Because the loss and the suffering that certain people and families have undergone, it merits more than just a, I'm not sure. It merits a full stop.

to say, what does this mean, rather than glossing over or moving on? And those two pages actually created kind of a whimsical moment too, which is when a couple of weeks before the book was released, I gave copies to every member of my team, know, inscribed to them and talking about how much I appreciate them. They knew the book was coming out, but they had not seen it.

And so ⁓ gave it to them. said very clearly, you know, this is not a homework assignment. You can choose to read it if you want. You don't have to. You can choose to talk to me about it if you read it or not either way.

And then I got this fairly frantic text that afternoon from one of my team members to be like, Bob, I don't know how to tell you this, but there's a typo. There's a printing error. There are two pages that are blank in the middle of the book. You're like, quick, before it gets out into the world, you have to stop this so you don't look foolish. I wrote back and said, thanks for caring about me. And actually, that was intentional. And you'll understand when you read it, if you do.

Chrissie Ott (12:45)
you

That's fun. Yeah, I loved that There's a time and space built in to kind of grapple with how unanswerable these questions are from our vantage point as humans. Also, thank you for letting us love Christopher with you. Thank you for sharing him with us. That's Bob's best friend who he lost to sudden cardiac death. ⁓ But what a wonderful friendship you described.

Bob Macauley (13:27)
for Chrissie, you having read it, and for whatever of your listeners end up reading it, I mentioned that one of the things that I have kept, even though he has now been gone for over a decade, is his fleece, which as you can see, I'm wearing it right now, I it all the time.

Chrissie Ott (13:41)
Are you wearing it right now? ⁓

I loved that. Yeah. Yeah. That's special. One of the things in this book that brought me some really fun smiles and joy was your love of Buffy the Vampire Slayer ⁓ references to Princess Bride and Top Gun and Wicked and more. Just so fun.

Bob Macauley (14:08)
Well, I like to be eclectic. Sometimes when I'm giving a lecture and I draw different quotes in, I'll actually, the very first slide, if I'm using PowerPoint, I'll put pictures of all the people I'm about to quote and kind of challenge people in the audience to be like, can you imagine how we're gonna pull together, you know, in this book, for instance, Buffy the Vampire Slayer and Elie Wiesel and Maya Angelou and like, I'm not sure people could do that.

And I hold out this hope. don't know if she listens to your podcast, but I'm, one of these people. My kids make fun of me because I'm one of these folks who like nothing ventured, nothing gained. And if there's no downside, why not give it a try? when we go to concerts, when people come through Portland that I like to listen to, I will not uncommonly write them letters in advance to be like, Hey, if you're on tour and you're bored of restaurant food, come over to our house. I have a cup of tea and meet my family. Kate very rarely does it work. But the reason I bring it up is.

I did track down, to the best of my ability through Google, an address for Sarah Michelle Geller who played Buffy and I sent her a copy of the book with a little tag on it, with a tab on it with the references to Buffy and so my hope is that at the very least it reaches her and she realizes in the midst of so many people that that television show has touched that it also touched someone that she might not have expected like this 58 year old guy.

Chrissie Ott (15:29)
That is so delightful to me. That sounds like an element of surprise for Sarah Michelle Geller and yeah, unexpected for sure.

Bob Macauley (15:40)
Yes.

Chrissie Ott (15:42)
did this beautiful simultaneously titrating and disclosing your own history of sexual abuse, Bob. can't imagine, you making something so private, personal, painful, public, and doing so as, you know, a highly visible professional. And I don't have

so much to say other than to just like deeply acknowledge that you did that skillfully and you titrated it with some consideration and not, ⁓ you know, shock value. ⁓ it makes it feel safer for people to acknowledge and acknowledge their own or people close to them. And as you know, bringing it to the light is

part of the healing and de-isolating it.

And you also talk about how your suffering has deeply informed this mission imperative to interact with and alleviate suffering in other kids. Thank you for transforming it and thank you for sharing that painful part of your story.

Bob Macauley (17:03)
appreciate that very much. I think that a quote that has come to mind frequently as I've thought about this book is, Janis Joplin has this great line of, freedom's just another word for nothing left to lose. And my riff on that of late has been, freedom's just another word for nothing left to hide. It takes work to keep secrets, to...

wondered does this person know this about me and I my gosh I hope they don't and there is something very liberating about giving that one up because at this point any person who wants to go into a bookstore click on a link on a website that sells this book can read about all that stuff.

And so I think that that's been very freeing for me, which I really appreciate. It's also been an interesting evolution because when I wrote the first draft, after a few revisions of this book, I sent it to about three people that I really respect. And the feedback I got from them independently and uniformly was

that it needed to have more of me in it. It was a little bit of a removed observer role. And so I revised it multiple times. And with that came significant concern on my part because I felt like I had to find the right balance. That too much of me detracts or distracts from where the focus should be, which is on these kids and their families.

too little of me doesn't really do justice to how they have impacted my life. And increasingly as people have asked me, how can you summarize your book? First of all, that's a challenge. Second of all, if I were to, I would say, and I say this in the last chapter, it's really a thank you note.

Chrissie Ott (18:58)
You

Mm-hmm.

Bob Macauley (19:05)
It's

really thank you note to these kids and their families for showing me how brave and wonderful and generous people can be. And so I wanted that to really be a thank you note. And one of the interesting pieces is that all the families that I worked with on this book,

they knew what was in their chapter because we had talked about it. had sent them and when the book was getting ready to be published, I offered, I said, hey, I'll send you the whole thing if you want. And they were like, pretty much to a one. They're like, no, that's okay. We'll just wait to read it when it comes out. So they had never read the whole thing. They had just read their parts. And I was worried, really worried that it wouldn't strike the right balance.

And I have a love-hate relationship with social media, mostly hate, but this is one of my love moments. One of the moms in the book put a post on Facebook when she had read the whole thing, and the last line was something very close to, we always knew what Bob meant to us, and now we know what we meant to him. And when I read that, I was like...

Chrissie Ott (19:54)
you

Bob Macauley (20:10)
I think I might have hit that balance because that's exactly what I wanted that the focus is in the right place, but y'all know what an impact you made on my life.

Chrissie Ott (20:21)
That is beautiful. I think the mark of a good thank you note is that the writer shares how the gift impacted them.

You know, you don't just describe the gift. So think that you did nail it for that purpose. And I'm glad that there was more of you in it because it's necessary. It's necessary. And it's generous to let the reader know more about you and this journey through time. I remember meeting you in our first consult.

you know, shortly after your arrival in Oregon. I think back to, you know, what was happening for you in that move and certainly would never have known. You mentioned this multiple times in the book, you know, cis het white male with resource privilege and education privilege. and Robin Williams, very poignant quote, like everyone you meet is fighting a battle. can't see. I had no idea, you know,

that you were anything except just ascending the professional ladder. And so it means something to me as a professional colleague and friend to just have a fuller picture of that context.

Bob Macauley (21:43)
I appreciate that. I think that having those privileges is in so many ways a blessing, and I don't mean to overlook that at all. At the same time, I think that it makes it harder for people to see the real you unless you take steps. Like I'll always remember the example I've shared this with my kids multiple times when I was in seminary.

the dean of my seminary I knew sort of in passing and I was going through a lot of stuff. I was doing a lot of thinking, a lot of feeling. I was in therapy for the first time. I was beginning to grapple with my childhood in a substantive way that I'd never had before. Like my world was kind of getting rocked and it was the welcome back picnic my last year of seminary and the dean, who I'm sure is a very well-intentioned person, came over and said, how are you? How's it going? And I said, fine. Like I lied, you know, because

That's the polite thing to do people are when people say how you doing most of the time They don't really want to know they're ready for you to say fine and then say they're fine and then you move on and so I said fine Maybe I said it in a slightly kind of maybe I paused for a sec to be like hey if you really want to know I'll tell you I don't know if I did I said that and he paused and he said you know Bob I can't imagine you not being fine and I remember thinking to myself and I can't imagine ever sharing anything important with you

You know, like if you can't imagine that, then you're not ready for it. And so I try really hard when I see people who seem like they've got it all together. It doesn't take much work for me to conclude that's not true. Nobody really does. Some of us just hide it better than others.

Chrissie Ott (23:29)
It's so true. I can think of a thousand examples, personal and professional. Privilege does not prevent all suffering, but it does sometimes make it harder to see.

I am not a book reviewer, but I do love good books, Bob. I think this podcast is not just about praise for your book, but there is a lot of it. And so I can't help myself, but just to tell you that like the sentences were beautiful. Like it was a pleasure to read for hours on end.

Bob Macauley (24:10)
Well,

thank you. I appreciate that so much. I am, like many writers, I'm sort of a thin-skinned person when it comes to my writing. And the reviews, generally speaking, have been really great, which has been so nice. And of course, I hold on to the ones that haven't. the ones that haven't, they've not been bad. No one's really that has taken the time to write something to be like, hated this book.

Chrissie Ott (24:27)
Of course, negativity bias, thank you very much.

Bob Macauley (24:38)
But there is this one person, like, don't know if this person is out there. I I only know what their moniker is on Goodreads. Canadian reader. I always thought Canadians were so nice, but Canadian reader called the writing clunky. Like my kids are just, they make fun of me because they're like, dad, have you gotten over the clunky comment? I'm like, no, I haven't gotten over the clunky comment. I really don't think my writing is clunky. But so anyway, I appreciate that very much.

Chrissie Ott (24:38)
You

You know,

they might have an oculomotor disorder and their reading is clunky.

Bob Macauley (25:09)
So bless their, absolutely bless their yeah, so I don't know, like that one's gonna stick with me for a while, but I do wonder about what it says about us. I do the same thing with like teaching evaluations. You know, I do some talk and like, you know,

Chrissie Ott (25:10)
Bless their hearts.

Bob Macauley (25:27)
X percent, very high percent, are really nice things and then like low percent are like, well I wish you'd done this or I could have done that better and I always hold on to that stuff so I think I'll always be that way.

Chrissie Ott (25:37)
because...

my gosh, I resonate with that so much, Bob. I have a few of my handwritten evaluations from residency still in the file tucked far, far away. And I remember of all of them, you know, the ones with the yeah, pleasure to work with, you know, they fade in the background. But the one that I remember the most is a pediatric ER attending.

who described me as difficult to work with. And I'm sure that was an honest appraisal of her experience of me, because I was less...

What's the word? It's like subservient, like less submissive, less passive than the average pediatric resident as a fourth year medpeds resident who was already a few years older and had a little bit more out in the world experience. was different than her average person, that, ooh, that evaluation.

still right there with me. Ouch.

Bob Macauley (26:51)
Can totally relate to that. think that sometimes that for me is perseveration, but sometimes it's actually the beginning of greater learning. So I remember, I quote this all the time, ⁓ I'm of an age where role play was not something that we did in medical school. These days, medical students do a lot of role plays, which is fabulous. I never had that because it hadn't really gotten to be in vogue back then. And so when I was...

coming back around to try to get some training in palliative care as somebody who did not do a fellowship and kind of, as they say, grandfathered or grandparented into the specialty. I sought out every experience that I could. I'd read a lot of books, I did a lot of stuff, and by this point I'd been practicing for about a decade. And so I did this very intensive palliative care training course where it was my first real experience with role play.

and I ⁓ was working with another physician who actually didn't complete the course. I don't remember her name. This is now almost 20 years ago. I'm still talking about it. And we did this role play where she was a patient and I had to break bad news, of bread and butter of what we do in palliative care. And I had done a lot of reading. I had sort of gone through what scripts you're supposed to do. ⁓ And I tried my very, very best. And when I got done, I...

certainly acknowledged that it was not perfect, but I thought it was pretty darn good. You know, I tried my best and I was a pretty thoughtful guy. And I always remember what she said to me in her feedback. Very close to this quote, she said, Bob, I really love what you have to say. And I really wish you'd shut up sometimes.

And I learned so much. I'm still learning from that comment, which is that silence is so important and sometimes you might have the best possible thing to say and it should not be said. ⁓ And I think about that so much. And if she had only stopped short and just been like, really love what you have to say, I would have learned a fraction of what I learned from her, for which I'm incredibly grateful she didn't stop there.

Chrissie Ott (29:04)
I certainly sometimes hear myself still speaking when an awareness is dawning that this should be a time for quiet.

Bob Macauley (29:13)
Yes.

Chrissie Ott (29:15)
I'll try to respond to that ⁓ by fading out.

Bob Macauley (29:21)
Mm-hmm.

Chrissie Ott (29:23)
I think the only role play, that young trainees probably did when we were training or when we didn't have role play set up is that real life became role play. We were playing the role of clinician, but with real patients.

Bob Macauley (29:41)
Yes.

Chrissie Ott (29:42)
lots of on the job training.

Bob Macauley (29:44)
Yes, and I'm so grateful nowadays that people get the chance to practice some stuff, not in a real scenario, because that is important. I wish you didn't have to make your first mistake when there was a patient there who had to hopefully not suffer but experience that. So I think that we've come...

a very long way. Ialso realize too that no matter how much you roleplay, it's always different in real life. Like you can try to, even with the best, if you have standardized patients or actors playing patients who do, in my experience, incredible job, there is still something that you can't quite get to actual reality because there's a little part of you in the back of your head that says, this isn't real.

Chrissie Ott (30:04)
Yes.

you

Bob Macauley (30:28)
And this is not a parent who is about to lose their child. And when you're in the room, in the real world, it feels a little bit different. It has to. But at least you're better prepared than I think that many of us were back in the day.

Chrissie Ott (30:41)
Absolutely. didn't know, and it makes sense given the timeframe, that you are a palliative care physician who did not do a fellowship, who grandparented in, as you say. And what I take away from that is how powerful deciding to become something is, because you are...

and other people I know in this field who are not fellowship trained but are very much consummate palliative care professionals are no less than. Even if there is a.

protective or ⁓ turfy sense from some who are fellowship trained, a little ⁓ one-up-ness. I wish there weren't and sounds like it's a very human tendency, hold you up as in this case, exhibit A, you do not need a fellowship necessarily to become just a preeminent.

leader and pillar in the field.

Bob Macauley (31:41)
Thank you. I think I'm a little jealous sometimes of people who do fellowships because they do have the opportunity to have others looking out for them with clear milestones that need to be achieved and a sense of validation that you have achieved that milestone really important skills. And for those of us who...

Chrissie Ott (31:52)
Hmm?

Bob Macauley (32:04)
meandered around and found our way and cobbled together experiences, you never really know when you're ready or you never are sure if you're really good to And I also think that the field, especially in pediatric palliative care, has come so far that when I first started practicing 20 years ago, the national meeting, the annual assembly of the American Academy of Hospice and Palliative Medicine,

I still remember there were probably 20 of us who did PEDS. None of the sessions were specific to PEDS, and we would just kind of, as a big group, not a very big group, as a small group, we would wander around and try to find some content that had any bearing on what we did.

And nowadays, there's a ton of pediatricians and pediatric folks go in and there's like a pediatric track through that. So every time somebody says to me, I wish there was more pediatric content at the annual assembly, I'm like, well, let me tell you back in the day.

Chrissie Ott (32:59)
Exactly.

I was fortunate to attend the Harvard Palliative Care Education and Practice Program, which you know well, ⁓ in the pre-pandemic times. And I was so grateful there was a pediatric track. And we were still a much smaller representation, rightfully so, in that there are many fewer individual cases, but still plenty.

And it was such a transformative training for me. It has been just a touchstone and confirmation that providing palliative care in the context of pediatric complex care is certainly part of the calling that I feel in this work.

Bob Macauley (33:45)
agree and actually that story I told about the role play and you know I really wish you'd shut up sometimes that was a p-set so you and I share that foundational experience

Chrissie Ott (33:55)
there is some intense role playing at PSAP, for sure.

What would you give in terms of a thought about joy to someone entering this field or thinking about palliative care today?

Bob Macauley (34:14)
Well, I think that I loved your definition of joy that you mentioned a little bit ago because I think that when people hear joy, first of all, I don't think it's a term we use super frequently. I think people talk about happiness, contentment. And when someone talks about joy, I kind of wonder if they are using it in two very different ways. One is sort of like, you know, ⁓

⁓ Zippity-doo-dah, skipping down the yellow brick road kind of thing, which is a bit of a shallow notion, I think, of just perpetual happiness or something like that, as opposed to joy in a more, much more meaningful way, like you use the term. ⁓ And so I wrote an article, a reflection piece a few years ago, that comes to mind. It was called, somewhat surprisingly, The Selfishness of Pediatric Palliative Care.

Chrissie Ott (34:51)
Yeah.

Bob Macauley (35:10)
And when people saw the title there like that, it's weird, right? Like, isn't pediatric palliative care all about selflessness and self-sacrifice and entering into suffering? like, to some degree, there's certainly the entering into suffering. At the same time, I think that there needs to be this balance, which is we shouldn't, I don't think...

do our jobs just for what it gives us, like the warm fuzzies that you get from having helped somebody, because that becomes very self-centered. At the same time, if the only reason we do this work is a sense of duty and selflessness, I'm not sure I'd really want someone working with me who got up in the morning every day and be like, gosh, I had to go to work, I hate this job so much, but it has to be done. That's not really what you want to be working with either.

Chrissie Ott (35:59)
Martyrs

are not that much fun.

Bob Macauley (36:03)
So, you know, I think you got to find the balance between those two things. And for me, it is a resetting of expectations, which is to say that we all know what we want out of life, that's core fundamental element. And really, the trick with joy is figuring out how to find that when your number one thing is not

in our work we ask people a lot of sacred questions, like what they hope for. And so when we have learners come through with our team, of which we have many, I'll ask them, how many times have you asked a parent what they're hoping for? And usually it's like never, because it's sort of an unusual question in medicine, although it's bread and butter for palliative care. And so I say, well, if you were to, what do you think they would say? And they'd be like, oh, you know.

parent of a kid with a serious illness, they'd say, I want my kid to get better and live a long, happy, healthy life. I'm like, absolutely. And if you stop there, have you regularly learned anything? Like you knew that before they answered. You had to ask them what else they hoped for. Because if you can't hit the number one, you got to figure out what else you can try to achieve. And I think that's where joy comes in, which is like, I would love it if everybody got healed and cured and they lived happy, healthy lives. Don't get me wrong, but I know that's not going to happen.

So how do we find these moments, these moments of meaning and connection and fulfillment in the midst of an unjust and unpredictable situation? And how do we hold onto those things?

You you mentioned we started off talking about Cora and Trisomy 18. And when I was trained with, I was taught that the median life expectancy of Trisomy 18 is a week. It actually hasn't changed a whole lot.

but that in certain, depending on the treatments that you give, sometimes that median life expectancy can increase. Some of the early studies coming out of Japan where they treated kids intensively regardless of their diagnosis were more like five months. And some people might be like, still really short. I'm like, yeah, but to those parents, like the difference between a week and five months is huge. And not to say that five months is all you can hope for, because you can hope for more like Cora evidenced. So I think that it's...

all about what our expectations are and cherishing moments that you wish there were more of them, but there's one right here and how can we hold onto it?

Chrissie Ott (38:28)
is beautiful. It reminds me of your quote in the book about holding your child for their whole lives, which just gives me chills and ⁓ like what a a divine inspiration to give those parents that framing.

Bob Macauley (38:44)
And I would say too that that wasn't some slick thing I had been working on for a long time. It just popped out. exactly. Exactly. So I'm, I'm grateful that that seemed to have resonance in that moment.

Chrissie Ott (38:50)
It just dropped in. Yeah. Yeah, that's why I use the word divine.

Some of the most difficult experiences that I have had, whether in symptom management or ⁓ kids with serious life limiting illnesses, have been when the medical team and the family were out of sync in the direction of medical team actually wanting more for the child than parents. been involved in a situation like that together.

And you describe one of those such situations in the book where a parent of a child who was suffering from a neurological condition was not willing to treat their pain because of their own fixed beliefs about pain management and distrust of the medical system, which I find is often at the root of those times when we're out of sync.

you know, I'm not leading up to a very specific or well articulated question here, Bob, but I, I just think there's something there to talk about. Cause it's relatively unusual that the team feels strongly that there should be intervention for me. I'm not sure that that's the case for you, but for me it's relatively uncommon. And then that loss of trust.

in their relationship is palpable and difficult to recover from.

Bob Macauley (40:36)
I certainly agree with you that it's not super common. think that it's probably more common for parents to want more than the medical team does, because the medical team ⁓ may be having an understanding of the likelihood of benefit. ⁓ And also, I think that it is just such an unnatural thing for a parent to not try something that even has the remotest chance of saving their child. ⁓

Chrissie Ott (41:05)
or relieving

suffering.

Bob Macauley (41:06)
Exactly.

In those rare instances where a parent may not be in favor of as much as, especially from a symptom management standpoint as the team, like in that example, I think that...

Curiosity and a sort of humble inquiry is a key thing that sometimes we gloss over. We feel like we have, for noble motivation, it's not like I'm talking about physicians being like, I'm the doctor I know best, but you wanna help this kid, right? So you're being driven by noble motivation and you know what you can do ⁓ and you have a, hopefully, I would imagine nuanced understanding of what it is you are doing. That is,

potentially not as impacted by ⁓ perceptions or connotations or stigma like related to the use of opioids or something like that for pain management. think the mediation and negotiation literature, there's an important distinction between positions and interests. So an interest is say relieving suffering, a position is we should give morphine for this.

And I think that one of the challenges we run into is we get into a battle of positions. Like, I want to use morphine, parents says no. And I say it louder, hey, I really want to and the parent says no. If we can pull back, I think our interests may actually be not dissimilar. And if we can find, we keep backing up away from the specifics to the generalities until we finally get back to the same generality that we have subsequently taken divergent paths, then maybe if we can meet up there.

we can figure out a way to move forward. But it doesn't always happen that way. And I think that are the cases that keep us up at night for good reason.

Chrissie Ott (43:00)
You know, it takes some pause and some presence and some reflection and sometimes the steadying hand of an experienced colleague to bring us back from the brink of entrenched positionality.

Bob Macauley (43:16)
Agreed.

Chrissie Ott (43:16)
and it may

not ever get easy.

Bob Macauley (43:21)
I also think that we are inherently in the medical profession. First of all, we're fix it people. We like to fix things. And we also, I like to think, I tend to think that we're optimists. We keep trying. We keep trying to come up with the best possible solution.

And one of the things that I think both ethics and palliative care have in common is they're both really the search for the least bad option. Because if there was a good option, someone would have figured it out and we'd be doing it.

That's tricky because if it's a least bad option, it still means it's not great. And so how are you going to choose between them? The different choices you have is a complex question.

Chrissie Ott (44:03)
Yes. I love the nuanced multi-layer, you know, what do you hope for your child? And I'm going to offer that question to you as books are a version of our creations in the world. Children, what are your hopes for your book?

Bob Macauley (44:23)
my hope for the book is that people who may not be super familiar with the work that you and I do come across it. So when you are pitching a book to try to get somebody to publish it, they always say, who is this going to appeal to? And the obvious question, which may, or the obvious answer, which actually may not be the right answer, would be people in our field.

So I'm not actually sure if that's true. I've talked to people in the field who very honestly say, look, I do this all day. I don't really want to read about it at night. You know, and I said, I totally get that. but I would love to think about people who don't know much about what we do. Maybe you don't even know that people do what we do because it's more pleasant to think that kids don't ever suffer and don't certainly don't ever die.

Chrissie Ott (45:02)
you

Bob Macauley (45:19)
But if they were to dare to think about it, I would hope that this book shows them that it may not be what they assume. And I think that people often assume that what we do is just unbearably sad with unrelenting sadness, and there's no joy in the work, and that nobody ever actually gets better, which oftentimes, thankfully, kids do.

And even if they don't, there still can be joy. And if there's that sense of surprise, like, I didn't know that. If they know that now, I would love that.

Chrissie Ott (46:00)
Thank you for that answer. It is a bit of a remitting and relapsing sadness that accompanies and thank goodness for the remittances. I really enjoy picturing you playing cards and games with the young girl at the beginning. Grace. Yeah.

Bob Macauley (46:19)
Grace.

Chrissie Ott (46:22)
That's Grace.

Bob Macauley (46:25)
And she didn't go easy on me on the card games list, that's for sure.

Chrissie Ott (46:32)
I love that you remember that.

Bob Macauley (46:33)
Hahaha

Chrissie Ott (46:35)
I she would too.

Bob Macauley (46:36)
And it's been really lovely, the occasion of the book to reconnect with various people along the way, like the parents of the kids in the book, and also various folks like that story that you just mentioned, the great sort of culmination of that chapter was Grace getting to go and see Broadway and the then nursing student, now a nurse practitioner who

was far more creative than I and pulled that one off and I was along for the ride. She and I were able to get back in touch as a result of her being part of that chapter and me sharing the book with her and even sharing some stories about the two pilots who volunteered their time to fly us down to New York. And it was really an occasion to bring people together and remember how, like, it's always funny when people say, what do you do? I'm like, well, I...

I practice pediatric palliative care, but that's actually not accurate because you can't do it by yourself. And so I'm part of a group, an amazing team who does this. And not just the team who get paid to do it and are specialized in their field, whether that be nursing or chaplaincy or social work or art therapy or whatever. But I mentioned, I forget exactly the language I used in the book about some.

Chrissie Ott (47:39)
Right.

Bob Macauley (47:58)
I'm generous previously uninvolved person. Like people come out of the woodwork and do the most remarkable things. And I hope that learning about those folks for the reader will be important too, that it's not just people who have a badge that says pediatric palliative care on it, it's people who step up to help somebody else. And the examples of that.

Chrissie Ott (48:02)
Kiss.

I imagine the who it appeals to part was a large part of the too numerous to count rejections that you describe in the afterword or towards the end of the book. ⁓ But I'm so glad that the right person was found. I'm so glad that this book made it out and is in people's hands. And if it's not obvious to my listeners, I will say it explicitly like it is absolutely worth your time to

to hear these stories. are beautiful. They are much to celebrate. I love having a mental picture of you sitting on the floor of FAO Schwartz with Grace. And like that's part of the work too.

Bob Macauley (49:03)
Mm-hmm.

Yes, completely agree. Thank you. Thank you.

Chrissie Ott (49:09)
Yes, it's a joy to celebrate that with you, Bob. Yeah,

it is. It's a joy to have you here and ⁓ may the book touch all the people it's meant to and produce good things for the OHSU pediatric palliative care program to whom all proceeds from the book are distributed.

Bob Macauley (49:35)
And thank you, Chrissie, for the work that you do both as a physician and also with this podcast. This has been a delightful conversation. Thanks for having me on.

Chrissie Ott (49:42)
My pleasure. May our paths cross again soon.

Bob Macauley (49:46)
Yes.

Chrissie Ott (49:48)
Thanks again to Dr. Bob McCauley for your wisdom, tenderness and clarity. I'm so grateful to call you a friend and colleague. Today you invited us to notice tiny joys, to look for shared hopes, not just positions and to practice the brave work of choosing the least bad option with love. Your two blank pages are always gonna stick with me for a long time. Next week.

I'm joined by Dr. Mel Thacker, surgeon and coach, host of Surgeons with Purpose podcast. And if you are a surgeon or physician feeling stuck, burned out, or hungry for alignment in a clear voice, this one will be for you. Quick note for physician coaches and the coaching curious, the Physician Coaching Summit is November 6th through 8th at Civanna Wellness Resort and Spa in Carefree, Arizona. It's an immersive restorative gathering for physician coaches at any stage.

and physicians, leaders, and wellness champions who are using coaching in real world care. Think rigorous learning plus generous community in a setting that actually helps you exhale. Details and registration at thephysiciancoachingsummit.com.

And if you've been listening to these conversations over the past year, you already know we've been circling around some big questions. What joy is, how we access it, and why it can feel so elusive. If you've been curious about how these themes might apply in your own life, I'm going to invite you into something very special and new. For the first time on September 6th, I'm hosting a Solving for Joy half-day intensive.

We'll gather virtually in real time and spend a few hours together exploring our own memories of joy, the components that make joy possible and the obstacles in our lives that so often keep us from weaving it in. This is a space for reflection, connection, and deepening your own experience of meaning, alignment, and delight. You will leave feeling resourced and inspired, and I would love to see you there.

The details are in the show notes and at JoyPointSolutions.com under the navigation bar services tab. I would love to see you there.

And lastly, as always, I'm a doctor, but not your doctor. This podcast is for education and connection and is not medical advice. Please speak with your own clinician about your specific situation. Huge thanks as always to our wonderful producer, Kelsey Vaughn and to Su my favorite human and steady North star. Thanks for everything you do, my love. And may we all keep choosing presence, curiosity, and the tiny joys that sustain us even in the hardest moments. Take care everyone. I'll see you next Tuesday.