Palliative Care Pioneer: Susan Block

Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: Today, we are truly honored to welcome Susan Block, who is the founder of the department of psychosocial oncology at the Dana-Farber Cancer Institute in the Brigham and Women’s Hospital in Boston. She is one of the founders of the field and has worked to develop it over the last 25 to 30 years. She is one of my earliest mentors. She is also aunt to our other guest today, who I’ll introduce in a moment. Welcome to the GeriPal podcast, Susan.

Susan: Thanks very much. I’m very happy to be here with all of you.

Alex: And we are delighted to welcome back Brian Block, who’s been a frequent guest and host on this podcast. He is a pulmonologist and critical care physician. He’s assistant professor of medicine at UCSF, and he’s one of my former research mentees, and he’s very interested in medical ethics and decision making in the ICU. Welcome back to the GeriPal podcast, Brian.

Brian: Thanks so much. It’s great to be here.

Eric: So Susan, very big thank you for joining us on this podcast. We’ve got a lot to cover. We would love to hear your thoughts about things about palliative care, where we’re going, where were we before, intersection between psychiatry and palliative care. But before we do, we always start off with song requests. You have a song request for Alex?

Susan: I do. Will the Circle Be Unbroken?

Alex: Great choice. Can you tell us why?

Susan: It’s a song about the life cycle and about how things evolve over lifespans and how people are interrelated, and it’s really a beautiful song about love.

Alex: Eric may have heard me jamming out to this song at the VA the other day for about 30 minutes. I’ll try to keep it a little shorter here.

Alex: (singing)

Eric: Thank you, Alex.

Alex: That’s a fun song. Thank you.

Susan: Beautiful.

Eric: So Susan, you have touched so many people in the field of hospice palliative medicine. Myself personally, I was in PCEP at Harvard, I think like 2007 or something with Rachelle Bernacki and a bunch of other great people. And I learned so much from you and your husband, Andy. And man, I still remember those sessions, some of the most powerful learning experiences of my career as a palliative care doctor.

Susan: Thank you.

Eric: I wonder if, as a pioneer in the field… And I was just reading about that. There was a Stanford article talking about you as a pioneer in this field. And I just remember one of the things was a quote from your mom, Jeannie Block, who said, “Do what you love and the rest will take care of itself.” And I wonder, how did you fall in love with palliative care? What was that story?

Susan: Well, I think first of all, there was no palliative care back then. I was a medical and psychiatric resident between 1977 and 1982. And it was really before there was a field. What I fell in love with and felt incredibly compelled by was the taking care of seriously ill patients and particularly helping them negotiate emotionally the experience of being very seriously ill. And at that point, I was interested in the interface between medicine and psychiatry. And I really started to become an internist, but about halfway through my internal medicine residency, I got into psychoanalysis. That was one thing. And then I immediately realized that I was fighting going into a mental health discipline because of my parents’ background in mental health as psychologists. And so I did the psychiatry residency always with the intention of working at the interface between medicine and psychiatry.

Susan: And I think the thing about seriously ill patients that was really compelling was that I really thought that they were getting really bad care and I felt like nobody was talking to them, that people were misleading them, that they were not being given choices. That was back in the era where patients did not have a voice in their end of life decisions, where on the side of the medical chart, there was a black dot if they were DNR and the black dot was determined by the attending of the service. Okay? There was no conversation with the patient or the family about this. There may have been some, “Well, this is what we decided,” but the black dot on the chart was the way end of life decisions were made back then. And that did not seem right to me.

Alex: Wow.

Susan: This was at a well known Boston teaching hospital that I love and is a great institution. And this was standard during that period. Kind of flabbergasting.

Eric: Yeah. And then, I read that part of your initial early work was an opportunity to work with Project on Death in America. Is that right?

Susan: Yeah. I mean, I’ve been in the field for 12, 13, 14 years by the time PDIA came along. And so my first introduction to the field came with my first job in 1982, when I went to the Cambridge Hospital to do primary care and internal medicine. And part of that job, they were looking for somebody to be a medical person in the local hospice. Was before the Medicare hospice benefit. It was really ancient times in our field. And I found it incredibly compelling to see people in their home. It was a weird time in the field because hospice was started primarily by nurses in the United States. I don’t think that’s widely known. And it was a countercultural movement. It was designed to rebalance the kind of care that people got in the high tech, super intense hospitals. And the people who were in it had often had very strong spiritual and religious backgrounds that they brought into the hospice work.

Susan: Because of the roots in this anti-medicine countercultural construct, there was a little bit of an attitude of dismissal of some of the things that we now consider essential in palliative care. And there were basically two or three drugs. There was morphine and there was morphine and there was Ativan. And the medical approach to these patients was very limited, but people were treated in their homes, with their families, with enormous compassion and care, which is what was really the antithesis. And the focus was on their comfort. And the families were part of it, which is not what it was like in the hospital. And these were people who made this particular choice. And the early phase of our field, which I think people don’t know that much about actually, there was really… It wasn’t until Project on Death in America started in 1994 that there was a real push to make the field somewhat academic.

Susan: Those first 12 years that I remember in that field were personally challenging, because I’m not a nurse and I’m not a particularly… I don’t come at it from a spiritual or religious framework, but I came at it as an academic doctor. And the small number of people who were in the field back then, including Andy, my husband, and a handful, two handfuls of people, of people who had any academic background were troubled by how unacademic it was. And it was extremely marginal. And there was, when we had this opportunity to start changing it and to try to bring the core principles of hospice into the belly of the beast of academic medicine, which we felt was necessary to have a workforce, to have… And that was the other thing I wanted to just say, which I think is important. There was no knowledge base back then. There was no knowledge base. And so people were just doing whatever they wanted, whatever moved them to do.

Susan: And people had very good instincts, but some people would use one opioid, some people would use another opioid. We didn’t really have any available information about changing from one opioid to the other, about… Medicines were used in a very unsophisticated way because we just didn’t know any stuff. And in order to create a knowledge base so that we could make the practice better, to have trainers who could train the next generation, to bring programs in so people could see what good hospice and palliative care were, those were among the original goals of the Project on Death in America.

Alex: It’s wonderful to have this perspective. I think in all these years, I haven’t heard about these early years as much. I’m thinking that looking back, it sounds like there were several major steps that really boosted the field forward. And one was the Medicare hospice benefit.

Susan: Yes.

Alex: Another was the Project on Death in America. Are there other big catalyst moments that took the field forward in a leap and a bound so that it started growing to where palliative care is today?

Susan: Well, I think in those very early years, the two other big forces were the SUPPORT study, which was a $30 million trial of communication intervention, very well… I mean, very methodologically sophisticated trial that showed no impact. And I think there had been this hope that that would be the silver bullet that would solve all the problems that we had in this space. And it wasn’t. And so people were shocked and felt like we had to do something. And the other, I have to say, impetus was Jack Kevorkian, the pathologist who was euthanizing people in the back of his VW van. And there was a strong sense that this was not the way people should be cared for at the end of life, by someone who was a pathologist, who’d never taken care of a patient, who had major issues, let’s just put it that way. And in such an undignified setting.

Susan: And I think all of those elements came together in the early ’90s to get the Project on Death in America going in this space. And then the Robert Wood Johnson Foundation, which had funded the original SUPPORT trial, came on again with a lot of money. And that was the core coalition. There were a whole slew of foundations who got involved at that point. And the Project on Death in America Faculty Scholars’ Program was the first big program that came to fruition. And it’s the program that I ran that trained 87 leaders in palliative care across the United States who really became the first generation of leaders of the field. You know all their… Or many of their names. Diane Meier, Sean Morrison, Steve Pantilat, David Weissman, Charles von Gunten, Randy Curtis, blah, blah, blah, blah, blah. These are all people who have played major roles in building the field.

Alex: Brian, you want to jump in here? You got a question for your aunt?

Alex: I love saying that, by the way. [laughter]

Susan: I love hearing it.

Susan: I don’t think you’ve ever called me that, Brian. [laughter]

Brian: I don’t think I have either, but we now have it on tape, so that’s perpetuity.

Susan: Great. I like it.

Brian: I guess I’m thinking about hearing all this as a more recent product of medical education here. I finished medical school 10 years ago, and then internal medicine residency three years after that, and then pulmonary and critical care fellowship, and then finally finished it all. And you’re talking about developing a field, developing clinical experts in the field, research literature base, and a methodologic approach for a field that was also, as you said, marginalized. And then alongside that academic development, there’s also the task of bringing that learning to everyone that’s training to be a physician, which I think has been one of the goals. And I guess I’m thinking that some of this was in my medical school curriculum and in residency training in a way that I imagine it wasn’t 10 years before, 20 years before that. I wonder what you think about the progress of incorporating these lessons and training for the broader physician and clinician body and where there’s still gaps that we need to do a better job.

Susan: Yeah. That’s a great question. I think that obviously the first step was to train a faculty so that they had something to say to learners and knew how to teach it effectively. And I think that’s one thing that was done pretty well in the early days as part of a strategy. But I think you’re absolutely right when in my residencies, I don’t think I had any teaching whatsoever about palliative care, serious illness care. I don’t even remember pain management teaching. I don’t remember anything. I had a little stuff in medical school. And I think until starting in the mid-’90s, when there was these multiple different things that were starting to get palliative care into a little bit more of moving towards the center, but still very much on the outside, a lot of the PDIA scholars were doing interesting kinds of teaching at… Started doing it at medical schools around the country and started exposing learners. And learners were excited about it and interested in it because a lot of these people were fantastic educators.

Susan: And that was a very important point. But even then, and even when you were in medical school, the level of teaching was still quite minimal. And there was some teaching about pain. There was some teaching about ethics. There was a little bit of teaching about end of life care. And for example, there’s still in most medical schools no required rotation in palliative care. And so much of what we do, we do at the bedside of the patient, with the family, using communication skills and so on. And that doesn’t happen in a regular way. I think there’s data that shows that there have been improvements in end of life care. I think the biggest gaps are in the clinical experience, and a topic that I really want to spend a little more time with if we can, on the psychiatric aspects of palliative care.

Susan: And the reason I think this… I’m segueing a little bit, but the reason I think this is so important is if you each think back on what are your hardest end of life cases, I would bet that in general, all of them are complicated by some psychiatric mental healthy kind of issue, whether it’s substance abuse or personality disorder or any one of a very complicated family situation or whatever. And the hardest stuff that we deal with in palliative care is the psychosocial stuff.

Susan: And the field has done, I think, a pretty good job teaching communication skills. I mean, I think that has been a real shining light in the field of palliative care. But we have communication skills, but we don’t have the content and the knowledge and the skills to use the data that may come to us about our patients’ lives, about their mental health, about their substance use, about all those different things, in an effective way. And I think that’s a huge gap and it’s really something that medical training doesn’t do a good job with. Psychiatric training is about major mental illness. And that’s very important, but it doesn’t address all of the things or many of the things that are central to the experience of patients with serious illness.

Eric: Yeah. I love this too, because when I think back to my own medical school training, I think the only time I heard the word affect was what I should be doing as far as in a psychiatry or neuro evaluation in my exam. And really it wasn’t till, I think, PCEP where the importance of following affect because it’ll take you to those places that are really at the heart of what we do in palliative care. I know part of that was working with you and learning about the importance of that. And whether it be around thinking about working with patients about grief or their past or current substance abuse, when I think about the things that I struggle with the most even after a decade and a half in this field, like you said, it’s the psychosocial stuff. It’s the interpersonal communication, not just the easy stuff, but the really hard stuff.

Susan: Yeah. I think it’s a lot of understanding what’s underneath the words. And when someone is being incredibly lovey-dovey about their doctor, “My doctor is the greatest person in the world and I love her to death and she’s so important and I call her all the time and she talks to me on the phone and she’s just so great. She’s so responsive.” You elicit something like that, but then there’s a lot of information in that little vignette that tells you things about the patient, about the doctor-patient relationship, perhaps about a doctor’s vulnerabilities, and perhaps about a bunch of stuff that’s going to get you in big trouble down the line in the care of this patient. And if you don’t have some of that understanding about how to dissect that and think about it, which I think palliative care doctors are overwhelmingly internists and family physicians who’ve had… Family physicians have had a little bit of psychiatric training. Internists have had none, basically. They’ve had none. And there’s a lot to learn in our field of psychiatry. There’s a lot.

Eric: Susan, I’m going to push you for a second. How much of it… In communication skills training, there’s often roadmaps that we give, like if somebody expresses emotions, name the emotion. Okay. Check. Done. As an internist, we like check boxes-

Susan: I know.

Eric: … like check, check, check. How much of it is we’re too structured in our responses and not curious enough?

Susan: Well, I think a lot of it is the lack of curiosity. And I think that the biggest thing I think is that… I don’t mean this in a dismissive derogatory way, but when we started out teaching about palliative care, our colleagues said, “Well, we already do that.” And they thought they did. And they really, with all good intention, thought they did. And I think we don’t know what we don’t know, and that’s the fundamental issue. And we don’t know how to do it. And even with check boxes, there’s such a stigma, I think, even in palliative care, about psychiatry, that we ignore really critical elements. So I’ve spent years trying to teach fellows to do a mental status exam in a routine way on hospitalized patients. And I can’t do it. I’ve been completely unsuccessful.

Susan: And I think I know how to teach this. And I think we make compelling points about this, but I think it has to do with this feeling of, “I don’t understand what that means. I don’t know what to do if I find it. I would rather not find it because it’s just going to get me in the muck.” And so I think that there are a lot of resistances to this that I haven’t been able to… Oh, you have a nice dog in there, I think, or cat.

Eric: Yeah, it’s a dog.

Susan: But I think it is a minimization, a devaluing, an anxiety. There are a lot of different things that go into this. And I think this is an area that we in palliative care have neglected to push forward on. And that as everything is getting more and more medicalized and more technologized and all these different things, it’s taking us further and further away. And this is my biggest worry about the field, that we are losing… This is about whole person care and you can’t do whole person care if you don’t understand something about their psychological state.

Eric: Well, let me ask you this. You mentioned you’re trying to teach them to… Was that a mental state exam?

Susan: A mental status exam.

Eric: I got a A&O times four, like done. Check.

Susan: Well, but you’re… Right. Exactly. They sort of knew the year or the date. I forgot to ask that, but they seemed to know. I mean, you know how this goes.

Eric: Yeah. What would you want people to do? What is the Susan Block palliative care mental state exam?

Susan: Well, I think for people who are seriously ill and in a situation where they’re on drugs or they have anything that could be affecting their brain, they should have a systematic exam, whether it’s a MoCA or a mini mental status. I don’t care. Something systematic.

Eric: Speaking the truth to the GeriPal audience right there. I love it.

Susan: Okay. I just think it’s really an important thing.

Brian: So this conversation about understanding the mental state of patients that you’re working with has me thinking about the experience that I have very often in the ICU when I can’t even get to know the patient and they’re not able to participate in these kinds of decisions. And instead I’m working with either a surrogate, singular or plural, multiple people that are there to represent the patient. Sometimes there’s nobody, but hopefully there is. And in that case, I’m wondering about what we know and what we don’t know about those people that we’re asking to serve in this role of helping advise us about the care we’re giving the patient. And I’m thinking this in particular because I had a experience in the past caring for a patient who was not able to participate in decisions. And their spouse had some erratic behavior and there were questions about that person’s capacity.

Brian: And then I had the unique experience months later of actually caring for that spouse when they were admitted to the hospital and learned a lot about their medical history and other factors that totally changed my perspective of how that spouse had been representing the initial patient months earlier. So I think this is really interesting just to think about what we know and don’t know both about the patient when that patient’s able to make decisions and also opening it up to the family. And I wonder what you think about that.

Susan: I couldn’t agree with you more. I mean, I think that there are red flags that we see when a family member’s being difficult. It is an indicator that to provide the best care, we need to go deeper into trying to understand what the dynamics are there. And does this patient have a major mental illness? Are they using drugs? Do they have a history of trauma? There’s so many different things, but those kinds of things really make a big difference in terms of how much credence or how we interpret what they’re saying about the patient.

Alex: I’m aware that we only have about nine minutes left and we always finish these on time. I want to make sure we get to talking about advanced care planning-

Susan: Oh good.

Alex: … and serious illness conversation. Several of your former PDIA, Project on Death in America, scholars banded together and published a very controversial article in JAMA as I’m sure you’re aware. Sean Morrison, Diane Meier, Bob Arnold, and my understanding is James Tulsky was kind of a ghost fourth author who got booted because JAMA only allows three authors on their viewpoint articles. We’ve had several podcasts on this issue and most recently, I think, was Juliet Jacobsen and Rachelle Bernacki talking about shifting to serious illness conversation. And then we had Sean Morrison, Bob Arnold, and we had Susan Hickman and Rebecca Sudore on talking about it. Would love your thoughts on this. Is this an issue? How is it an issue? What points do you agree with? What points do you disagree with?

Susan: Well, here’s my take on it. I think that we have focused on completely the wrong desired outcomes for advanced care… Well, let me start all over on that one. I think we shouldn’t be doing advanced care planning before somebody has a serious illness or something that’s likely to end their lives, beyond having a healthcare proxy. I’ve felt that way for 20 years. I think the rest of it, early advanced care planning is useless. I don’t believe in it. But I do think that once someone has a serious illness and before you’re in the phase of just in time decision making, I think what happens to people in that situation is that they’re terrified.

Susan: People are terrified. And in that terror, they may be avoidant. They may not be thinking about these issues. They may not be talking about this. They’re scaring their family from bringing it up. They’re scaring their clinicians from bringing it up. And they’re left alone with this anxiety and not able to move forward psychologically in a way that will help them make better decisions when just in time arrives. I think what serious illness planning does when it’s done well is that it allows patients to start talking about it. It detoxifies a conversation and the thinking about what’s likely to be ahead and what the choices are and what possibilities might ensue. And I think in that detoxification, there’s a huge preparation to engage at a later point when it’s more clear what the exact decisions are at a less terrified and more in control and aware way. Because I think when you don’t do anything, people just don’t go there.

Susan: The people who most need it don’t go there because they’re scared. They’re too scared and too anxious and too overwhelmed. And so we need to start earlier with people so that they can get to a point where they can talk about it. We’ve all seen in palliative care, go into the room and people are so shut down. They can’t focus on it at all. They’re overwhelmed. And I think that the results that we saw in the serious illness trial that we published, having these conversations, first of all, didn’t make people more hopeless. It made most people more optimistic. It reduced anxiety in a way that was sustained for at least six months, as long as we measured it in the randomized trial, and it reduced depression. And those are outcomes… Again, these are psychological outcomes, but when you talk about quality of life, anxiety and depression rank up there with pain as probably the three most miserable contributors to poor quality of life.

Susan: And so why would we think that’s not important? And we’ve always thought about this issue as, “Well, in the last month, did they get what they wanted?” I was thinking about that 10 years ago. I’m putting myself in this bucket here. But then I started to realize, why shouldn’t they start getting what they want and being more comfortable with their illness tomorrow? Why don’t we do it now? Why do we have to wait till they’re in the last month to care about their goals? And this is stuff that matters to people from the minute they have a serious illness. How do you want to be spending your time? What matters to you now? What are you afraid of? How can we mitigate those issues? It’s not about the decisions they make. It’s about the experience, the psychological experience for them and their families while they’re ill and likely to be getting sicker. So that’s why I [inaudible 00:34:01]

Eric: In some ways, some of that is just good medicine for everyone.

Susan: It is.

Eric: When we’re thinking about starting people on a blood pressure medicine, thinking about goals, what are they worried about? That’s big, hard news. If you’re starting a 40 year old on a blood pressure medicine, what does that mean for their life and taking these medicines and hearing what’s important to them, all of that is just good medicine.

Susan: Yeah. I agree. But we don’t do it unless we’re forced, in a sense by, by something.

Alex: So when you’re saying that other than assigning healthcare proxy, the early stuff shouldn’t… The focus should not be on advanced care planning. So these things like Death Over Dinner for relatively healthy… No.

Susan: I mean, there’s nothing wrong with it, but I wouldn’t put resources in it. I don’t-

Alex: Don’t put resources there.

Susan: Yeah. I mean, it’s good. It’s good. Talking about it is good, but I don’t think it has much impact. I wouldn’t put resources into it. That’s how I would measure it.

Alex: I know we’re running out of time. Can we do a lightning round? That be all right?

Eric: Lightning round.

Alex: Each of us ask you one question with a shorter pithy answer.

Susan: Pithy answer. Yeah.

Alex: Okay. My question is, what article are you most proud of?

Susan: Oh. Oh, I don’t know.

Eric: It’s definitely the American family physician article that you-

Susan: Oh, that Eric and I wrote. That was a good one. The one I wrote with you, Alex, or the couple we wrote together. It’s really hard for me to look at my work that way. And the things I’m most proud of are not my articles, to be honest. The things that I’m most proud of are my people, the people who I’ve educated and trained.

Alex: That’s a good answer.

Susan: So for me, that’s the metric that really matters to me.

Eric: Okay. Thinking about fellowship training in palliative care, we mentioned one thing that we’re missing. What do you think are the next big things that we should be addressing in fellowship to make hospice and palliative care fellowship a better fellowship for those caring for people who are dealing with serious illness?

Susan: One thing-

Eric: One thing.

Susan: … is the one I said, psychiatry in palliative care. I think we do a really good job with most other things. We’re now the fifth largest medical subspecialty. I mean, that’s incredible. We’re attracting people. I think this is the biggest thing and I don’t really… I’m sure there are lots of other things, but this is the most important thing for me.

Eric: Yeah. Psychiatry in palliative care.

Susan: Yep.

Eric: I love we’re finally focusing on things like opioid use disorder in palliative care too. All right, Brian.

Brian: Gosh, I’m trying to think of something that’s not too… Just the right amount for this lightning criterion we have here. I guess, as someone who’s now working a lot clinically with trainees in an academic setting, I’m trying to think what kind of skills in the ICU do you think as a non-specialist palliative care doctor that I can make sure that I’m trying to imbue in the conversations I’m having with trainees and highlight for them as core skills, regardless of whether or not they’re going to specialize in palliative care?

Susan: I think communication and reflection on communication. And I think the reflection piece is really important. What led you to say this and not that? And how do you think this went and how could it have been better? So I think the coupling of the communication and reflection would be what I would put my money on.

Eric: Yeah. I remember in PCEP back in 2007, we walked over to the palliative care unit and I was deathly scared because I knew it was going to happen, I was going to be talking to somebody and then I would get Susan watching me and then reflecting back and I loved… I learned a ton, but I got to say, I was so anxious and scared.

Eric: And I think that’s the hard part about feedback and role play-

Susan: Yeah. It is.

Eric: … and all this stuff, is nobody likes to be that person under the spotlight, but it is so helpful for growth.

Susan: Yes.

Brian: Susan, did you do a mental status exam on Eric at that time when he was.. [laughter]

Susan: No, I wasn’t astute enough to notice that he needed one. [laughter]

Eric: Well, Alex, do you want to finish it up with a little bit more of… What’s the name again?

Alex: Will the Circle Be Unbroken: (singing)

Eric: Well, I want to thank the Block family for being with us today. Was waiting an hour to say that.

Susan: It’s a great treat to be here with my nephew and with the two of you.

Brian: It is.

Eric: And thank you, Archstone Foundation, for continued support and to all of our listeners.