Oncology, Etc. - In Conversation with Dr. Peter Bach (Part 2)

"In part two this ASCO Education Oncology, Etc. podcast, healthcare policy expert, pulmonary physician, epidemiologist, and writer Dr. Peter Bach shares what it was like to face his wife Ruth’s cancer and eventual passing − as a husband and as a doctor. The episode also explores delivering difficult news to patients. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at [email protected]. Resources: Cancer Topics - Delivering Serious News" The Day I Started Lying to Ruth by Peter Bach, MD After a Cancer Diagnosis, Wishing for a Magic Number - The New York Times   TRANSCRIPT Pat Loehrer: Hi, I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University. I'm here with Dave Johnson, a Medical Oncologist at The University of Texas Southwestern in Dallas, Texas. This is the second half of our Oncology, Etc. conversation with health policy and payment expert, pulmonary physician, epidemiologist, and writer, Peter Bach. In part one, we chatted with Dr. Bach about his upbringing, the trajectory of his career from English Literature to Medicine, and from academia to industry. We also explored his seminal work on drug pricing and improving health equity. Today, we're going to continue our conversation with Dr. Bach by asking about something deeply personal: his wife, Ruth, who sadly passed away from cancer at the age of 46. Probably about seven or eight years ago, you wrote a wonderful article in The New York Times, and there was another article you wrote, but the one that I liked reading was called, “The Day I Started Lying to Ruth”, and this is where cancer stabbed you very personally. Can you tell us a little bit about that, and tell us a little bit about your wife, Ruth? Peter Bach: So, it was in New York Magazine, just to give credit where it's due, I'm very grateful to them for running it. I wrote that after she died, and it followed on a series I had in The New York Times called, The Doctor's Wife, which I wrote while she was getting her initial treatment for breast cancer, and then I walked through the steps of adjuvant therapy that she received, in my experience. And then the piece in The New York Magazine talks about her last months basically, and my experiences then. The story goes that she was tragically taken from us and tragically taken from my son when he was very young, and my experience being at her side-- and I think I was a good husband, I was present -- was an alarmingly dissociative experience along every dimension. You know, I'd go to her appointment, I would swipe in with my badge. You know, this was my place, and the doctor who took care of her is and was a dear friend, and so were the other doctors in most cases. And the visits, you know, I had nurses and people in the hall would say "Hi" to me. And then I was going through this absolutely devastating experience, you know, tearing apart the sort of prevailing narrative and experience and structure of my life and our family. And so, for whatever reason, it was this out-of-body experience where I could see stuff very, very clearly. Not only clinical realities, like I knew what was happening, but also the mechanics of healthcare, the interactions, and I felt like I should journal it, if you will. And then when I journaled it, I thought I should publish it, and so I wrote about what it was like to stand there when my friend, Chip Cody, the surgeon said, "This is cancer, I can feel axillary lymph nodes, you’ve got cancer." And what that morning was like between the-- look, most people have a lump, what's the big deal? We'll go, we'll deal with it. She's young. She had just had a mammogram actually, to that. And then the experience of, you know, and I was in Biostat at MSK. So, I'd sat for a gazillion protocol reviews, I'd read a gazillion informed consent forms, and then there was one in front of her for a randomized trial for adjuvant therapy. I mean, it was Avastin versus placebo versus a longer period of Avastin, if I remember correctly, and ultimately a negative trial I saw at ASCO. But sitting there and actually thinking about like, "What is this like for somebody who doesn't know all of this stuff?" And my wife was way smarter than me, that you guys know me, that is the least surprising fact ever. But it was still dizzying for her. And so, I wrote about that, like, hawt was our conversation like that night after that whole, like, “Do you want to join this trial?" And her peppering me with questions, like, essentially, “What the hell is wrong with you guys? Why don't you know these answers?" And it was sort of like, "Okay, this is why we do randomized trials, this is why we have placebo. This is–” And she's smart, not irate. She was much more relaxed and philosophical through the whole thing up until the day she died, or a few days before, than I ever was. So, I wrote about that. Like, what was that conversation like? What was she being asked to do, and how important was it that she did it? And I remember sitting in the room when that trial was presented, and The Kaplan-Meier overall survival curves, and I was pretty sure I saw the step in that curve. I'm pretty sure I saw her on that graph. And it made me-- obviously, I'm desperately sad that she's gone - but it made me proud that she had contributed to it, even though, you know negative studies are important, too. So, I wrote about those things, and I wrote about prognosis and what it was like to have a conversation when she asked about prognosis, and in an article called ‘Waiting for a Magic Number’, where I described her oncologist saying, "Fine, I'll tell you what are your chances of living five years, you tell me what's the cut point. Essentially, above or below, what number are you going to change things in your life? When you tell me that number, I'll tell you whether you're above it or below it." And it was like, "Wow, philosophy from an oncologist, fantastic." Really sunk in with both of us, and that was it. We never asked that question again, he never gave us a number. And I've been greatly rewarded over the years to run into people from here and there who say, "You know, I always hand my patients that article to put that in perspective." And then when she died, I wrote about the sheer horror of what was happening to me. And the title wasn't mine, but it was worked right on point. I found myself in a situation where I didn't want to reveal to her just how bad things were, and it was terribly weak of me. And ultimately, and I describe it in the article, got to a point where I just was ready for it to be over, before it was. And I think it's actually not that hard, to be honest, after you've gone through something like this like I don't really care what people think of me. I went through something really hard. And again, I'm someone with resources, I'm someone with knowledge, I could call her oncologist at two in the morning and he'd answer, that's not something normal people get. And you know, even for me, like this was completely disorienting. And so, that article was very rewarding to write because it allowed me to put it somewhere where I've gotten to revisit it. A couple of years ago, of course, he was young when I published it. He said he had read it; he liked the part about the dog. But I got a lot of notes afterwards from strangers saying that it provided them some comfort that even someone like me went through basically the same experience they went through. And look, this whole, like, "even something like me” seems odd, but I think to the external world, somehow, we're like, "You know, we get those white coats. Stuff is different for us," and of course, it isn't at all. Since that time, and we're all in the same world, so we have the same sets of friends. We probably have many of our overlapping friends who we know have lost spouses. In recent years, I routinely get phone calls from folks like, "I'm going through this, what's the first step?" You know, and it's about everything. "How do I deal with my kid? Should I go dating?" Stuff like that. Dave Johnson: You know, Peter, that article should be required reading for every Oncology fellow. I think it was beautifully written, clearly from the heart. I think your undergraduate degree shows in terms of your writing style, but to write that, I'm sure was emotionally challenging and difficult. In fact, Pat mentioned at the start of our podcast, Trillin's book, About Alice. In a book review that was written in The New York Times, About Alice, Trillin made a comment similar to the one you just made, where people that he didn't even know wrote letters in which they conveyed to him a sense of knowledge of Alice, even though he knew they had never met Alice. And I think your article about your wife conveyed that same sense to anyone who did not meet her. And I think you memorialized her in ways that are really fantastic. But I want to just read something from an article in The New York Times, and this is quoting Trillin. He says, "They may not have known her, but they knew how I felt about her." And he went on to say, "Yes, I got a lot of letters, like the one from a young woman in New York who wrote that she sometimes looked to her boyfriend and thought, "But will he love me like Calvin loves Alice?" I think the same could be written about your relationship with Ruth. And thank you for sharing that. I can't imagine how challenging that must be even all these years later, and I'm glad your son had the opportunity to read that. He should be proud of both his mother and his father. Pat Loehrer: It was a gift to all of us and mankind. You know, again, as I saw that article, there's a photo of you and Ruth on your last vacation. I think it was from Versailles, and I think you were in the Hall of Mirrors. And I think there's a poignant metaphor there about the reflection of your lives and being with her at that time, and we really thank you. We have all experienced this and it's so powerful there. There's this time when you get a result of a test of someone that you know and love and there's this limbo between, they're so naive and life is good, and it really is a time between heaven and hell in which you're the only one there, in which you know that you're going to go in the room now and change their lives forever by sharing this news. And we've been there and we pause, and again, you talked about that - I think being in a car looking at the x-ray. And that's the essence of when you said, the day you started lying to them, which is understandable because you just don't want to shatter that moment there. You know, we pause and reflect on that enormity of the moment there and I thank you deeply for sharing that with us because it's something that we physicians find, and this uniqueness of being a physician, and having someone you care about and knowing something that they don't quite know yet. Thank you for all of that. Peter Bach: The important message is that to patients, it's very isolating. And part of what I think the article did, and this was the message I got at least, was, send a message to other people that you're not alone. That others are going through it, others have gone through it, and I don't know what "it" is in that context, but loss. And there's that wonderful article in The New Yorker called ‘The Aquarium’, which is by man who had a sick child-- and I don't remember all the details, but the aquarium metaphor is, I can't remember if he's in the aquarium and the rest of the world's outside or the other way around, but it's that isolation that is particularly frightening. And when I talk with my friends who've gone through it, it's part of it. As I just said, you know, there's a lot of us out there. I don't know if it gives so much reassurance. You know, 40,000 women die a year of breast cancer, so there's a lot of people out there. Dave Johnson: Pat, you had, I think, a final question? Pat Loehrer: Briefly. You know, now I'm asking to be an academic person there, but if you had a young medical student and you were going to try to give them one lesson about communicating bad news to patients, what would that be? Peter Bach: I've obviously been in this situation many times. I'm a Pulmonary Critical Care doc, so I've watched bad news be delivered many, many times. And the first mistake I see people make is trying to fill the silence with words, and I think I made earlier reference to it. One of the key skills doctors need to develop is the ability to listen. And sometimes listening to silence is a version of listening, but it's delivering what you have to say without euphemism, with directness. Not everyone's enamored with it, I am. But then giving time to listen, even just space for people to feel safe, that that communication is part of a relationship, not a sort of text message. You know, in today's metaphor, right, that just arrives and the person moves on. That is really hard for people to do; not experienced doctors, for trainees because it's frightening for a lot of reasons. Over my career, I've certainly rehearsed it many times with people. I made the mistake myself too, of just sort of talking over the thing in the room to avoid, you know, just sort of as you said, the enormity of what you just communicated. Dave Johnson: So, Peter, I think you're right on. I think that's one of the most difficult things to do, is to allow that pause to take place. And so many, even highly experienced physicians attempt to fill that void when it doesn't need to be filled. Been there, done that, been on the receiving end as well as the delivery end of that. It's always challenging. You know, we're out of time, and I'm sad about that because we could go on, I'm sure for quite a long time. Want to end this by asking you, Peter, we talked about a book on the front end, both Pat and I love to read, and we share recommendations all the time. I wonder, is there a book or a podcast, or anything that you think we should read or you think our listeners should know about? And by the way, you can include anything that you wrote if you'd like. Peter Bach: Yeah, it'd be very au courant to pitch my own stuff here, I would never do that. I like to read as well. And so, I just finished Rules of Civility by Amor Towles. Of course, there's a few health events in it, but it's not to do with anything, but, you know, it's a book about New York. I live in New York, so I just enjoyed every single word of it. I'm newly married- Dave Johnson: Congratulations. Peter Bach: -thank you. I feel very lucky. And my wife has noted that I often like to read nonfiction at night. Typically, books about how the world is just going completely to hell. And she's noted that outrage is my happy place, that I sleep extremely well if I read something that's absolutely infuriating. So, the other thing I'll recommend is the book about the Department of Justice has essentially lost its mojo when dealing with corporate crime. If your best soporific is being absolutely furious, it's right up there with a full dose of Ambien. So anyway, those are my two recs. Pat Loehrer: I love it. Yeah, Dave and I both love non-fiction. We love that. So, it's great. Dave Johnson: We've come to an end of another podcast, and we want to thank our listeners for tuning in. We really appreciate your participation. Remember, Oncology, Etc. is an ASCO Educational podcast, where we’ll talk about virtually anything and everything. So, if you have an idea for a topic or a guest you'd like for us to interview, please email us at: [email protected]. Thanks again. You know, speaking of interesting nonfiction, Pat, if ‘pro’ and ‘con’ are opposite, what’s the opposite of progress? Pat Loehrer: Oh, I love that - Congress. Dave Johnson: Yes, Congress. I knew you would get that. Peter Bach: That is a ‘Dad joke’ if I ever heard one. Dave Johnson: We don’t have good jokes on this show. Pat Loehrer: We’re going to have to redo the ending to this because, Dave, you said this was an ASCO Education Podcast. I’m not sure we’ve taught anybody anything on this one. Dave Johnson: Now, Peter has taught us a lot. Pat Loehrer: That's for sure. Thank you so much, Peter, for a wonderful interview. Dave Johnson: Absolutely perfect. Wonderful. Peter Bach: Thanks for the privilege. It's wonderful seeing you both.   Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click, "Subscribe." Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at: education.asco.org.   The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.