Ep. 78: End-of-Life Care: Doing What’s Right for Patients

[00:00:18] Joanne Conroy, M.D.: Hello, I’m Joanne Conroy, and I’m president and CEO of Dartmouth Hitchcock and Dartmouth Hitchcock health. And it’s my pleasure to be here interviewing Dr. Amber Barnato. Dr. Barnato is here at the Geisel School of Medicine. She is the John E Wennberg Professor and Director of the Dartmouth Institute for Health Policy and Clinical Practice, and has a fascinating story about her career. And it’s just thrilling to share it with all of you. So welcome, Amber.

[00:00:52] Amber Barnato, M.D.: Thank you for having me.

[00:00:55] Dr. Joanne Conroy: So in Her Story, our membership is many young female professionals that are beginning their career and a lot of senior professionals that are really interested in other people’s careers. Now. Amber, your career is actually probably took a different path from many. So just let’s start telling us a little bit about yourself, especially where you from, where you grew up and where you went to undergraduate.

[00:01:23] Dr. Amber Barnato: Sure. Yeah. I grew up between Southern California and Lake Tahoe, Nevada. So I was born in Reno, and my parents then divorced. My father stayed in Lake Tahoe, and my mom mother moved to Southern California. She was from Pasadena. She moved us to a beachside town called Cardiff by the sea. And I had a little brother, and we grew up with a single mom, but spending summers with our dad up in Lake Tahoe, as well as Christmases. And I was one of these kids who, I think because I was the eldest of a single mom, I grew up pretty fast, was pretty independent, did a lot of things to help my mom around the house. And I think I’ve really prided myself on that sense of accomplishment. And she gave me a lot of positive reinforcement for that. She was really proud of me. And so she instilled in me the sense though, even though her life might not have gone the way that she had envisioned it, one of the smartest women I ever knew but was really working as a real estate agent and just trying to get by, barely getting by. I think the thing that was interesting is that I had this very clear sense that I could do anything from her. She really instilled that in. So I did well in school.

[00:02:30] Dr. Joanne Conroy: It’s amazing how your parents do that though. There usually is one defining moment that you realize how capable and skilled you are. And sometimes it takes an external person to confirm that for for you.

[00:02:45] Dr. Amber Barnato: My mom was definitely on that side. But of course there’s that sort of darker side, which is that my dad left us. And so I think there was probably that part of me as a kid who was always wondering like, what was wrong with us, why did he leave? He had a new family and a new wife, and so there was probably a little bit of that sort of like doubt as well feeded in me as a young person. But I did well in school. I was great at science. I was great at English as well. My mother was surprised that I enjoyed science because she was more of an English person. And I decided at a very young age that I thought I wanted to become a doctor. Again, kind of arbitrary, smart, good at science wants to help people. We all know that story. And I went to UC Berkeley, and that’s a state college in the State University in the state of California. And that was back in the years when you could only apply to one UC. And I applied to, in fact, I applied only to Ivy Leagues and UC Berkeley was my backup. I had terrible college advising, and I didn’t listen to my mother who suggested I look at some liberal arts schools. I was gonna go for the big names, and I didn’t get into any of them, including Dartmouth, which was my first choice. But I got into UC Berkeley and I had a quite a remarkable education there.

[00:03:54] Dr. Joanne Conroy: Well, you must have, because you went from there to eventually to Harvard Medical School, but you spent a little bit of time between Berkeley and going to Harvard.

[00:04:06] Dr. Amber Barnato: I did. There was a program called Cal in the Capital. I think there are some programs in other universities where they place college students in different kinds of internships in our state’s capital, to learn a little bit about the policy process. And the person who had started Cal in the Capital when he was an undergrad was Mike McGinnis, who was at the time the Assistant Surgeon General and Director of the Disease Prevention and Health Promotion. And so I was placed as an intern in his office. Just for the summer was the idea between college and medical school. And after being there for I think it was like two months, he sat me down and said, Amber, would you be willing to take an additional year off and spend time as my research assistant and speech writer? And I remember this is so funny, cause he would always meet me on Fridays at like 4:00 PM, sort of the end of his week was my weekly visit, and he sat behind this huge desk, and he had one of those flags behind him, and I would sit on the couch, and he was always very formal. And he said, so, let’s think about that. I said, well, I don’t know, you know, I’m holding an acceptance at UCLA for Medical School, I think I really ought to get on with my medical training. And he was sort of willing to think through this with me. So, tell me more about that. And what it meant. After we talked about my thinking about this and that and why I might take a year off and why I might not, he said, Amber, how old are you? And I had skipped kindergarten. So I was a year younger than most people entering medical school. So I said, oh, I’m 21. And he leaned back in his chair, he started laughing hysterically. And he was like, oh, you’re gonna take the year. So he went from this sort of like shared decision making deliberation to being like, oh no, no, no, no. You just take a year off. And it was the best decision that I ever made, even though it was of course a recommendation, not, as though he was an expert and I had such a time. I was part of writing Healthy People, what was then Healthy People 2000. We wrote the first U.S. Preventive Services Task Force guide to clinical preventive services. I had such an incredible opportunity to learn about the public health policy making process. And I learned about the field of general preventive medicine and public health, which I hadn’t heard about. There were several people in the office who were training or trained in that field who were doing this important work. And I had never heard of it. So the thing that’s most important about this is that I applied, I had, was holding UCLA and I reapplied to Harvard Medical School, because that had been my first choice. And Mike McGinnis wrote me a letter of recommendation, which he later read to me at my going away party, and it was one of the most kind and supportive and glowing letters of recommendation that’s the first one I’d ever really had the chance to read that was written on my behalf. And I knew it had had to have been good, because when I had my Harvard Medical School interview, unlike the previous time when I was rejected from Harvard Medical School, this time when I had my interview, the interviewer looked at my materials, said, oh I see, you’ve got a, a letter here from Mike McGinness, a very strong letter. And then he leaned, he’s like, so what do you want to know about Harvard Medical School? Where at, and I was like, oh, this is a different kind of interview.

[00:07:11] Dr. Joanne Conroy: So you really have a great example of having a sponsor.

[00:07:16] Dr. Amber Barnato: That’s exactly right.

[00:07:17] Dr. Joanne Conroy: Because we can have a lot of advisors and we can have mentors, but it’s really important to have a sponsor. And it was probably before we really talked about women leaders having sponsors, but he was your first sponsor. Now talk a little bit about deferring a year. I think it’s very common now, but it was not that common then. Were you concerned at all about it, or since he was so confident about it, you just figured that you’d figure it out.

[00:07:47] Dr. Amber Barnato: I think that’s why I was ambivalent when he made the offer. I think if I’m advising a young person, now that’s like an obvious yes, right? You want to be research assistant speech writer to the assistant surgeon general, like what a brilliant opportunity. But I was again, because I had plotted along from one step to the other in my young training career by that point, I really just thought that it was about getting on with it. And I didn’t know. I didn’t have that knowledge about the ways in which, even if it didn’t improve my candidacy for medical school, which it did, but it would expand my horizons. And I thought very differently about medicine after that. Because I went into that internship thinking about medicine is mostly the thing that we do in the clinical patient encounter and then learning about public health and the public health policy process, and really understanding this broader context completely, I mean, I think it changed the trajectory of my career without a doubt.

[00:08:38] Dr. Joanne Conroy: Yeah, I would totally agree. And it was a incredibly unique opportunity. Did you ever think about not going to medical school and instead going into politics?

[00:08:48] Dr. Amber Barnato: Hmm, never going into politics. I never thought about not going to medical school.

[00:08:53] Dr. Joanne Conroy: Yeah.

[00:08:54] Dr. Amber Barnato: I did think about quitting medical school.

[00:08:56] Dr. Joanne Conroy: Talk a little bit about that.

[00:08:57] Dr. Amber Barnato: Well, it’s kind of hard to remember. It was probably during my first year. I just remember feeling lonely and a little overwhelmed. I think that was probably the first time I experienced clinical depression. And I’m remembering back because I think that was the first time that I did end up taking an SSRI for clinical depression. But I remember feeling like maybe I couldn’t do this. But it wasn’t so much because I couldn’t do the work. The work was, it was challenging. It was exciting. But I got depressed and lonely, and it was just a challenging period. So I remember that thinking about quitting medical school, and then just being completely amazed when, I must have gone to the student health services, like, I can’t remember this to tell you the truth, but I ended up with a bottle of Prozac and changed my life. I was like, oh, oh, this feeling that I’ve been having this feeling of overwhelmed and just like, I can’t keep going or it’s gone.

[00:09:53] Dr. Joanne Conroy: You know, it’s interesting though

[00:09:54] Dr. Amber Barnato: So that was pretty powerful.

[00:09:55] Dr. Joanne Conroy: We have just begun to really appreciate the impact of some of the stress of both the undergraduate experience for medical students and the residency experience, as well as the impact on their behavioral health needs. We actually hired a psychologist here just for the residents. So their job is to ensure that our residents have all their behavioral health needs actually met, you know, appreciating that it’s an incredibly stressful training process. And I’m sure that many jobs are stressful, but there’s something about healthcare that’s uniquely stressful. And I don’t know if it’s the feeling of importance of every single decision, because we all remember maybe the decisions that weren’t the right ones. We remember all of our patients that maybe didn’t survive. They become part of who we are as physicians, and it’s a little bit of a heavy burden for people to carry. So, you completed Harvard Medical School, and then you decided on a specialty. Talk a little bit about that, like, why you picked your first specialty, and talk a little bit about, what I think is a really important story for people to hear, about charting your own career path in medicine.

[00:11:09] Dr. Amber Barnato: Yeah. So I chose general surgery, which was a complete surprise to me, as I mentioned, and we’ll get to the full arc here, I thought maybe preventive medicine, public health, general medicine would be for me. And I did my general surgery rotation first in order to get it over with. I was the kind of person who, like, I thought I would faint when I saw blood. And so I did my required rotation at the Massachusetts General Hospital. And this was in the olden days when people were on like sometimes 72 hours straight, like the entire weekend. And I remember just, I was completely smitten by the feeling of like, there was this sort of hierarchy in the hospital, where the surgeons were sort of at the top of the hierarchy, and we took the stairs for rounds, we worked really hard, and when there was a code, when the surgeons walked in the sea parted, and there was this sort of sense of power that, this is, again, this was the early this is 1994. And then again, I have my obsessive compulsive side of me and there was nothing that made me happier than me operating room, which is where everything is, orchestrated clean. And there was just this thing I was smitten by it. I loved this idea. And then of course, there’s the feeling that’s so different from internal medicine where you can sometimes save a patient or cure a patient, and that was very satisfying to me. So when I went back into my medicine or other kind of cognitive specialty rotations thereafter, there was nothing that made me feel like that. And so, it was almost begrudgingly. I begrudgingly chose specialty of general surgery, because I couldn’t find anything else that I had fallen in love with.

[00:12:41] Dr. Joanne Conroy: Mm-hmm

[00:12:42] Dr. Amber Barnato: I think in retrospect, again, if I had some more maturity, I might have been able to differentiate all of those different emotions and feelings, and so on. But at that time, and I think it’s true, I really did love the operating room. And so I matched in general surgery at the University of Colorado Health Sciences Center, moved to Denver and had this kind of, I don’t know how unusual of an experience it is, to tell you the truth, but I believe that it’s probably pretty common. There are actually a number of people in my own class, Class of 94 from Harvard Medical School who matched in general surgery but then who later switched into another specialty. But, I basically developed a moral distress from the experience of providing clinical care to realistic patients. And it just happened. Part of it was the stress that you’re describing. We were working every other on call, no mandatory weekends off, so on average, I was working about 110 hours a week. So there was that kind of stress. There was just the regular stresses of making these really challenging decisions. But the other thing that happened, which was just unique to my residency is that 3 PGY2s quit during the first two months of my internship. And what that meant is when they had to redo the schedule, they bumped up some of the PGY1s into PGY2 jobs. So I was doing second year resident jobs for six months of my 12 months of internship. So I was staffing the ICUs, which is usually a second year job. So I spent every other night on call in the ICUs taking care of patients who were sick enough to die. And I experienced over and over again, as you will recognize from your own career, of people being maintained on life supporting therapy who had very little chance of survival or whose quality of life might be severely compromised if they were to survive, with nobody really talking to them and their families about their goals or values or even providing emotional support. It was just all about the life sustained treatment. And I developed a feeling that I was doing things to patients because I was being told to do them not because it was what was right for them. And it all came to a head one night. It was one of those classic nights, you know, all alone, a patient who’d been mechanically ventilated for weeks, and who I’d been taking care of. I’d go to her bedside. She would write to me, I want to die in the little sloping letters. And I brought it to the psychiatrist. And I said, I’m worried about her. I think she doesn’t want to be on the life support. And they said, oh, just give her lorazepam. Through the G2 of course. They just treated it like she was depressed, and no one seemed to want to really engage around this. And in the middle of the night on the night when I was on call, she crashed. And I panicked. I called my PGY2 and I was like, okay, no, it was PGY3. Told him what was happening. And he said, and this is a quote. This is, and you’ll recognize this too, “No one deserves to die without bilateral chest tubes. And so I put in bilateral chest tubes without anesthesia. So she was still awake, but her blood pressure was low. And I cut in with a scalpel on both sides and shoved in chest tubes and got tons of fluid out and resuscitated her. He was exactly right. She was filled up with fluid. I don’t know how he knew that. And she survived only to be discharged to a long term acute care facility where she received mechanical ventilation until she died of a complication. And so what did I ever do for her? Right? I felt like I had completely abandoned her. And that case stuck with me. And that was the case that sort of led me to say, you know, this, this, there’s something’s wrong here. And so that’s when I started plotting my exit.

[00:16:12] Dr. Joanne Conroy: Yeah, you did. And which is both courageous and a little bit unusual. I want you to talk about what you did after you decided to leave your surgery residency, because a lot of people just leave and leave medicine. But you didn’t. You figured out what role you wanted to play and just that kind of passionate observation that we’re not making decisions with patients. We’re many times making decisions for patient.

[00:16:45] Dr. Amber Barnato: Yeah, well, so first of all, I felt very committed to finishing my internship. Like, I had made my decision. I alerted my supervisors and my fellow residents. Many of them tried to talk me out of it. What are you doing? You just have to get through. When you’re a surgeon, you can practice differently. But I, finished up my internship, and I went home to live with my mother. I actually had no plan. And I think that was literally the scariest part of my entire career trajectory, which is really not knowing what I was gonna do. I thought maybe I would quit medicine. I had these like super soft, a hundred percent cotton scrubs from New Massachusetts General Hospital, like they don’t make them anymore. I threw them away, because I was like, I’m done, I think I’m done with medicine. I started looking into PhD programs in English. I was really very like, you know, I wasn’t well. Okay, what can I do? So I started doing some, essentially urgent care work, teaching at UC Berkeley. They have an extension program, and I was teaching anatomy. And I just tried to like, put one foot in front of the other to figure out what I was gonna do next. But I was really at, at loose ends. And I was driving on my little Volkswagen Golf one day in the Bay Area, and the NPR came on it. And it talked about the findings from the study to understand prognosis and preferences for outcomes and risks of treatment or the support study. Had just been published in Jamma. It was the fall of 1995. And they talked about how this huge study found that, in a five center study, one of the investigators who led the project was from Dartmouth, had found that more than 50% of patients who die in these major medical centers, die in pain with lack of knowledge by their treatment team about what their preferences are for cardiopulmonary resuscitation or CPR, and that the families were also experiencing substantial distress watching their loved ones, and they had done a huge randomized trial to try to intervene to improve the care, and it was a negative trial, that is to say, they didn’t improve care. So not only did they document epidemiologically a huge problem with the quality of end of life care for patients, but also there were people who trying to do research to make it better. And it was literally an A-ha moment. I was like, oh, first of all, I’m not crazy. I’m not the only person who thinks there’s a problem with end of life care in the United States, but also there’s a job you can do conducting research to try to make it better. And so that’s when I decided I just like, boom, I was on my path, and it was very clear. So I, just changed. I called the authors, you believe or not, called the authors of the paper. I said, this is what I want to do. And they said, well, you have to finish a clinical residency. Then you have to do a research fellowship and then you become a faculty member. So I, with going back to my time with working with the assistant surgeon general in the Office of Disease Prevention Health Promotion, I remembered that specialty of Preventive Medicine and Public Health. And I thought, oh, I can do that. Applied. Got in. Then from there, I did my fellowship in Healthcare Research and Policy and got my first assistant professor job at the University of Pittsburgh. And it was literally like, from that time on, it was almost like, how do you describe that feeling when it’s like, the round hole found the round peg, right. It was like, boop. And I was like, oh, ha. This is it. I have my plan.

[00:19:50] Dr. Joanne Conroy: Well, we were felt very fortunate to recruit you up here to the Dartmouth Institute. And I think you came here just before I came here, maybe five years ago.

[00:20:02] Dr. Amber Barnato: Yeah, it was July of 2017.

[00:20:04] Dr. Joanne Conroy: Yeah. And you had really a specialty in Palliative Care, which you currently have continued to serve on the Palliative Care team while you actually lead the Dartmouth Institute. I think you’re the first woman to do that. Yes. And you fall in the footsteps of a lot of really impressive people in John Wennberg, as the creator of the Dartmouth Atlas, did focus on a lot of those data driven observations about the inequities of care. And they were some of the first people to really identify that the time that people spent in the ICU and the percentage of people that died in the ICU at the end of their life, which changed how we actually look at how we deliver care significantly. So what are your hopes for the Dartmouth Institute moving forward? So you’ve been Chair, or Director for about a year now.

[00:20:55] Dr. Amber Barnato: Yeah. Thank you for that question. I mean, you described the Dartmouth Atlas and its impact on health policy, and I think on a generation of health services researchers. And I was one of those people. I looked to the Dartmouth Atlas for a model for how to conduct health services research around variations about normalizing this concern about variation in, for example, ICU days at the end of life, and essentially putting policy makers on notice that this variation was potentially unwarranted. And so many of us in the same generation that I grew up in looks to variations research and also the shared decision making research done at the Dartmouth Institute as pathbreaking. And so my career was very much modeled in some way after some of this work. And in fact, I was mentored at a distance by John Skinner, who is a faculty member here in the Department of Economics and at Dartmouth Institute when I was at the University of Pittsburgh. He served as an external advisor to my career development award from the National Institute of Aging. And so he was very generous, invited me up here to participate in quarterly meetings of his program project grant. I learned tons about research from here. But one of the things that has happened over, say the 20 years, that I’ve been doing health services research is that the Dartmouth Atlas is still a kind of a go to bit of information people have had now have downloadable data that they can get. Nonprofits still use it, in state and local health departments, but it’s not as prominent in the health policy debate as it used to be. And furthermore, I think as we’ve come to think differently about variation. I’ve come to reflect on the fact, and this is me personally, that when we’re focusing on variation in end of life healthcare spending that presumes someone using Medicare Claims, that presumes somebody lives long enough to get Medicare, right? And we know that because of significant healthcare disparities in this country and elsewhere. There are black and brown people who don’t live to 65. They don’t get their benefit of Social Security and Medicare that they deserve, because they die prematurely due to chronic disease mostly. And so I started thinking, well, then the Dartmouth Atlas is really the Dartmouth Atlas of people who survive to 65. Furthermore, we’ve focused mostly on overuse. That’s been our big policy angle, and that’s a big problem. But what about all that underuse? Right? For people who are not comfortable coming into healthcare facilities, because they don’t feel safe. They haven’t felt like they’ve been treated with respect. So I just thought the next iteration of the Dartmouth Atlas that I’d like to see is a health equity, Dartmouth Health Equity Atlas. We’re just beginning to generate some of the ideas that would inform that. But really just taking a step back and thinking, well, we used a white racial lens, a New England white racial lens, to think about this policy issue. But let’s think about it from other perspectives. So I’m excited about the way that we might renew and refresh the Dartmouth Atlas to focus on unjust variation rather than just unwarranted variations.

[00:23:49] Dr. Joanne Conroy: Yeah. I, I think all of us think that’s actually really exciting and the perfect time to be doing that. It’s almost, moving forward, how do you add an additional lens to how we look at the data and what data we actually access? Now, I know we have a lot of both young and seasoned, emerging leaders that actually listen to Her Story. When someone were to ask you about your leadership, do you think your leadership path has been intentional or accidental?

[00:24:18] Dr. Amber Barnato: I would say a little combination. So I would say that my path has been accidental, but I had a sense of the leadership inside me ever since I was young. I had a feeling that I had something to contribute that was special. And again, I think that’s part of that exceptionalism that comes with being cisgendered, white, heterosexual female from, even though I was raised by a single mom, we did have means compared to other people. But I really felt like I could lead, I was a leader. But as far as my path to leadership, like how, what that was gonna look like, it was totally accidental.

[00:24:50] Dr. Joanne Conroy: Yeah.

[00:24:51] Dr. Amber Barnato: And it was also, yeah, it was also the other piece that’s hard. And again, to those of you out there who have children, I have two children, 17 and 13, and throughout their lives, I have toyed with the idea of leading into leadership roles, and always found a very socially acceptable excuse of not doing so because I had children, it was always understood that your family comes first. And I was finding myself, having this kind of internal thing. I was like, well, maybe I don’t want to be a leader. And so I’m just using my kids or maybe I do want to be a leader and my kids are getting in the way, like I was struggling with this all the time, but I mostly would just sort of close the door with like, what, I have children. I’ve got a big enough job already, so it’s enough, but it was after George Floyd’s murder that I had that sort of recognition where I was like, hold on. I have so many privileges. And if someone isn’t gonna like step up to try to do something, then that’s on me. Not trying to make a difference. And so I really felt called to do it. That was the thing that got me over my own self focusing on how my own life would be, maybe adversely affected by working harder was having that mission, and it was beyond the mission of the research that I described before, because I was already cooking with gas on, providing evidence to inform policy makers around end of life decision making. But it was something about the massive structural inequities that underscore everything in our nation, let alone healthcare delivery, that I felt like I really had to step forward. And so that was what got me that extra little boost over the hump to take on a bigger leadership role.

[00:26:26] Dr. Joanne Conroy: Yeah, well, we’re glad you did. One last question for audience. What advice would you give to some of our emerging leaders that are listening?

[00:26:37] Dr. Amber Barnato: Well, the biggest expression of your leadership is curiosity and support for those around you who you work with, whether that’s your junior colleagues, your peers, your students. I have found that that is literally the way that I can lead, have the greatest impact and lead the most, which is to hold space for people’s flourishing and development, and to do what I can do to facilitate and support that more important than any budget, I think, more important than any program that I develop. It’s really investment, authentic investment, in the people who I work with or at who I train that’s the most important way to lead.

[00:27:21] Dr. Joanne Conroy: Yeah. Well, thank you, Amber. This has really been great. And I think your career story is an inspiration for a lot of our emerging young leaders, that sometimes are gonna make tough decisions and maybe make some career choices that feel like it’s a side step, but if they actually follow their passion yeah, as I say, you’re gonna work really hard, no matter what you do. So you might as well do something you really love. So thank you so much for your time today and thank you, all of you, for listening to Her Story.