EP. 52: A SPACE FOR MYSTERY

Mar 6

WITH ELISHA WALDMAN, MD

A pediatric palliative care physician talks about finding a space for spirituality amid the ups and downs of caring for his young, seriously ill patients and their families.

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Episode Summary

Matters of faith and spirituality are seldom openly discussed in medicine. But for our guest in this episode, pediatric palliative care doctor Dr. Elisha Waldman, these issues are a daily fixture of his work. Dr. Waldman is Associate Chief of the Division of Pediatric Palliative Care at Lurie Children's Hospital of Chicago and former Medical Director of pediatric palliative care at Columbia University Irving Medical Center. He is the author of the memoir This Narrow Space, in which he describes his seven years working as a pediatric oncologist at Hadassah Hospital in Jerusalem, Israel, while grappling with the ethical and political complexities that came with treating his Muslim, Jewish, and Christian patients. Over the course of our conversation, Dr. Waldman discusses his formative religious upbringing, delves deep into what it means to be present with patients in moments of suffering and existential anguish, and examines what his experiences have taught him about the enigmas of life, death, faith, and identity.

Elisha Waldman, MD is associate chief, division of pediatric palliative care, at the Ann and Robert H. Lurie Children’s Hospital of Chicago. He was formerly medical director of pediatric palliative care at the Morgan Stanley Children’s Hospital at Columbia University Medical Center in New York. He received his BA from Yale University and his medical degree from the Sackler School of Medicine in Tel Aviv. He also trained at Mount Sinai Medical Center and Memorial Sloan Kettering Cancer Center in New York, and at Boston Children’s Hospital. His writing has appeared in Bellevue Literary Review, The Hill, The Washington Post, The New York Times, and Time. He lives in Chicago.
In this episode, you will hear about:
• How Dr. Waldman’s early interest in religious studies influenced his pursuit of a career caring for children with cancer - 2:12
• Dr. Waldman’s religious upbringing as the son of a conservative Jewish rabbi - 7:00
• A discussion of spiritual care in medicine and what it means to be a “spiritual generalist” versus a “spiritual specialist” - 13:49
• Reflections on what brought Dr. Waldman to Jerusalem and what it was like to practice medicine in such a diverse and politically complex city - 23:01
• How Dr. Waldman finds the emotional fortitude to continue giving care and comfort to children who are seriously ill - 26:11
• A discussion of powerful and beautiful moments in accompanying patients through suffering - 33:40
• How pain differs from suffering and what physicians can do once they recognize that difference - 48:13
• Dr. Waldman’s advice to young clinicians on being present and curious with patients - 57:25
Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:02] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to the Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build healthcare institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across healthcare, from doctors and nurses to patients and health care executives; those who have collected a career's worth of hard earned wisdom. Probing the moral heart that beats at the core of medicine, we will hear stories that are by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Henry Bair: [00:01:03] Matters of faith and spirituality are seldom openly discussed in medicine. But for our guests in this episode, pediatric palliative care doctor, Dr. Elisha Waldman, these issues are a daily fixture of his work. Dr. Waldman is associate chief of the Division of Pediatric Palliative Care at Lurie Children's Hospital of Chicago and the former medical director of pediatric palliative care at Columbia University Medical Center. He is the author of the memoir This Narrow Space, in which he describes his seven years working as a pediatric oncologist in Jerusalem, Israel, while grappling with the ethical and political complexities that came with treating his Muslim, Jewish and Christian patients. Over the course of our conversation, Dr. Waldman discusses his formative religious upbringing, delves deep into what it means to be present with patients in moments of suffering and existential anguish, and examines what his experiences have taught him about the enigmas of life, death, faith and identity. Dr. Waldman, thank you so much for taking the time to join us, and welcome to the show.
Elisha Waldman: [00:02:10] Thank you so much for having me. Really an honor.
Henry Bair: [00:02:12] To start us off, can you tell us what led you to a career in medicine and then specifically to pediatric palliative care.
Elisha Waldman: [00:02:20] To lay that out, I would go all the way back to undergrad, where I majored in religious studies. Clearly, medicine was somewhere banging around inside my head because I bothered to take the pre-med courses. But the truth is, by the end of undergrad, what I really wanted to do was get an advanced degree in religious studies, and I sort of had this idea of wanting to be an Indiana Jones type figure of archeology in the summers and dusty libraries in the winters. I studied undergrad in the States, but I went to medical school in Israel, less to learn medicine and more as a vehicle to live over there. For a few years I had grown up back and forth. My dad's a conservative rabbi and as often happens in those sorts of families, we spent many summers there and there's a strong pull to that country. My intention was to spend those years there and then return to the states to go to divinity school. And it was really only in the middle of medical school when we got to actual patients in the hospital that I said, Whoa, this is actually really interesting. That that has been a double edged sword throughout my career, I have to say. You know, I decided to move ahead with a residency in pediatrics because I always sort of felt that I had an affinity for the pediatric world. And then afterwards went on to do a fellowship in pediatric hematology oncology at Sloan-Kettering in New York, which all sounds very funny for someone who started off saying, I was uncertain about what I was going to do.
Elisha Waldman: [00:03:55] I chose oncology. I think for a number of reasons that I think are relevant to where I've landed. I was really interested in not dealing with one specific organ and dealing with the whole body. I was really interested in dealing with family units, with how people relate to each other. And I don't know if I would have articulated this at the time, but I was really interested in serious illness and maybe even suffering. I definitely don't think I would have articulated that at the time. But in retrospect, I think that was that was there. And I went on from there. I moved to Israel where I took up a practice at Hadassah Hospital in Jerusalem in their Department of Pediatric Oncology, where I mainly cared for children with sarcomas. Over my first few years there I realized more and more that the stuff that was really driving me was less the minutia of chemotherapy and protocols and more this sort of bigger picture naughtier stuff around how do families make decisions. How do you think about - do we use all our money to go to Europe for a trial? Do we go ahead with option X or option Y? Or even more broadly, how do patients and families make it through the fire, you know, go through this stuff and somehow come out on the other end and.
Elisha Waldman: [00:05:30] Without realizing it. It was only after a couple of years that I realized there was this thing, palliative care, which existed already. Although pediatric palliative care was still in its very early years. I did a brief course in Boston, a two week course in general palliative care, and that sort of acted as a gateway drug. I did that course thinking it was going to help me think about palliative care in the context of my patients. And in the end it led me to apply for a full hospice and palliative medicine fellowship, which I did about a year ago. And that was really the pivotal point. I mean, I think landing in that fellowship was really the first point where I turned around, looked over my shoulder at that career arc and said, Oh, there's an arc that makes sense here, starting with religious studies as an undergrad and moving through the care of children with serious illness and families facing serious illness together and landing back in this specialty that aims to think about how to live well in the face of serious illness, how to manage suffering, how to unknot some of that stuff. And so I do miss- I don't practice primary oncology anymore, and I do miss it. But I have spent the last decade really focused primarily on pediatric palliative care, and it's been deeply, deeply fulfilling.
Henry Bair: [00:07:00] Elisha, thank you so much for taking us through that journey. There is so much in there for us to unpack. It sounds like religious studies was a very important part of your early life, and that's certainly not something we hear or talk about a lot in the world of medicine. So I'm hoping we can start there. Can you tell us about your relationship with religion and how it has evolved throughout your life?
Elisha Waldman: [00:07:30] Yeah, sure. It's a great question and I apologize for the long answers. I'm a preacher's kid. It is very hard for me to give concise answers. I hope he'll forgive me for saying that.
Tyler Johnson: [00:07:40] Luckily, you're on a podcast where we specialize in long answers and even long questions, so you're in good company.
Elisha Waldman: [00:07:47] Thank you for that. Well, as I mentioned, I guess that's relevant. I mean, I grew up in the home of a rabbi, a conservative rabbi, which conservative means liberal in sort of that parlance, but grew up with with religion in the house.
Tyler Johnson: [00:08:03] For those who may not be may not be familiar either with Judaism in general or especially with the different flavors of Judaism. I hope that's not an offensive way of describing that. But can you give us a little bit of a flavor? What did that mean? Is that keeping kosher? Is that observing the Sabbath? Is it like what what were the daily cadences of your religious life growing up?
Elisha Waldman: [00:08:26] Yeah, sure. So my family tended to follow the precepts of conservative Judaism. And to be fair, there are many people who who fall under the heading of conservative Jews but may not follow all the precepts. There's there's a wide variety of flavors, even within each given flavor. In my particular household, we kept kosher, so we would keep two sets of dishes at home to keep meat and milk separate. We would eat out in restaurants, but not meat, only vegetarian. We didn't drive on the Sabbath. We didn't use money on the Sabbath. So really sort of a for those who who do know Judaism, it's really sort of somewhere right in the middle there. And there are some paradoxes tied up in the conservative movement; why one does one thing and not another. But I grew up with that set of observances and. To be honest, in college, I didn't go in thinking I was going to do religious studies. I think I took a course or two and just really got hooked. And I think an important part of what hooked me is, you know, a on the surface, I just found it fascinating. You've got anthropology and the humanities and some art history thrown in there. And, you know, it's it's really fascinating to learn about the history of religion, the psychology of religion. But I think the part that really set the hook in me was that there was an element of personal challenge to it as well.
Elisha Waldman: [00:09:58] And it's the right timing, right? You're 18, you're starting to come into the adult world. It's you're not living under your parents roof anymore. And it was just fascinating to think about religion and spirituality in a way that also challenged myself, you know, to learn about, for example, say, some pagan roots of Jewish ritual, which is fascinating. And then to go home and say, Hmm, I wonder what that means about my current practice of that ritual. You know, does it invalidate it? Does it change how I think about it? Does it make it richer? I think that that's important and really sort of want to note that personal hook, because I also think that's a note that has been consistent for me throughout my career. This may be jumping slightly from the direct question that you asked, but it speaks to my relationship with my personal relationship with religion and spirituality.I mean, I'll give you the spoiler alert. I don't have any great answers. Right. I have not had a moment in the last two decades of my medical career where the heavens parted and I had an epiphany and it all made sense. And I realized how it all works. Not by any means.
Tyler Johnson: [00:11:19] We had that in the show notes, and now we have to take it out.
Elisha Waldman: [00:11:21] Exactly.
Tyler Johnson: [00:11:22] Sort of disappointed here. Okay, keep going.
Elisha Waldman: [00:11:25] If I was doing this, well, I would say "if you stick around to the last two minutes, I'll give you the answer!" You know, what I will say, though, is my my own personal experience of spirituality had been so much richer over the last 20 years because of what I do at work, because there is that personal element. And I want to be careful about that because, you know, when I'm in the room with a patient, it's not about me. And I think that's a really important point, right? When I'm sitting and experiencing and supporting and helping patients and families through hard decisions, hard times, often just sitting quietly and offering presence for their suffering. It's not about my own spirituality, right? I don't place that on them. But it's also important to recognize that it's impossible to be in that room and not have it be working on me. Right? You can't you can't be unscathed by it. Scathed is a hard word because it sounds negative, but I mean this in a positive way. You can't go home at the end of the day and not say, what does this mean? And again, Imy thoughts have evolved over the years. My specific practices may have changed somewhat. And part of that is being married and coming to agreements, you know, with your partner about what your household is going to look like. Part of it has to do with my own beliefs, but but my beliefs have really evolved and become richer even while I picture them as this rich storm of clouds. And yeah, it's really meaningful. I had a colleague who described Ellen Davis, who was a theology professor at Duke, and she once described a professor of hers at Yale Divinity School saying to her a great line that always stayed with me. If something like if you pass through these halls and have never shed a tear, then you've missed the point entirely. And I think about that often with my work. Again, not not that I bring my stuff into the room, but you can't be unscathed.
Tyler Johnson: [00:13:49] I'm resonating, I think, with an element of what you're saying in the following way. Much of the impulse behind this podcast is and you've heard me say this before, if you've listened to other episodes, is that everyone in the medical world knows that we're in the midst of an epidemic of burnout. And the question, of course, is why now? Many of the factors are systemic and bureaucratic and corporate and a lot of other things, which is not what we're talking about right now. And I don't want to discount those or pretend that we can just put on a happy face and those will go away. That's not what we're saying. But there is still a realm within which we can act right, whatever the corporate pressures are, and the bureaucratization and everything else. And that's we sometimes talk about the bigger systemic things on the podcast, but where we spend most of our time is in that personal realm. And one of the things that I think. Henry and I have both observed now over nearly a year's worth of these conversations is that, you know, if you think about when you're training to be a doctor, you can think about your developing a capacity for doctoring across multiple different axes, right? So there's a if you're a surgeon or a proceduralist, there's a technical axis, there is a knowledge based axis, there's an A cognitive integration axis, right? Pulling all the pieces together. There's an interpersonal axis. Anyway, we could name a bunch of these different domains.
Tyler Johnson: [00:15:17] But I think that one of the things that we have come to recognize more and more as time has gone on is that there is a whatever label you want to give it, there is a spiritual axis to the practice of medicine. And we have talked, to be clear, we have talked to people who are Jewish, people who are Christian, people who are Sikh, people who profess no denomination. It's not so much about, as you say, it's not about bringing your religion per se, but it is about- I think we need to recognize that there is a whatever you want to call it, metaphysical element to this. And and if we try to ignore that element, I think it makes us kind of sick, right? Like it, it, it detaches us from the deeper meaning. And I think that detachment from the deeper meaning of what we do is part of what makes the big picture practice of medicine writ large sick today. Right? It's what makes it feel empty and detached. And so, as you say, it's not that you you're not bringing your Jewish rites or whatever into the patient's room, but what does honoring the spiritual dimension of a visit look like in your realm of work? Right. Which is pediatric palliative care. Like what? What does that mean?
Elisha Waldman: [00:16:48] Yeah, it's a it's a great question. I mean, there's a couple of different angles of approach to this. I mean, one is I, I should reiterate, I mean, I really want to be careful, especially because this is stuff that I deal with and teach a lot. You know, there's an important distinction between spiritual generalists, which I think we all should be, and spiritual specialists and, you know. One of the boundaries there is to what extent you are actually touching the live wire of someone else's spiritual practice. Right. And I think it's important, you know, the same way. I wouldn't mess with a surgical field because I'm not a surgeon, but I should know when there's going to be a surgical emergency. Right. I need to put a hand on an abdomen and know there's a surgical problem. It's important to be very aware of those boundaries when it comes to spirituality. I will say that, at risk of sounding a little woo woo but you brought up the word metaphysical, I do think that step one is not being afraid to bring your your spirit into the room with you. And what I mean by that is not, again, not to say not to advertise to patients, your own beliefs or what you're thinking, but to manifest your presence as another human being. Again, I know that sounds a little woo woo, but but I think that that gets read in the room.
Elisha Waldman: [00:18:18] It gets read when you're in there with a specific concrete agenda and you just want to get through it and get to the decision versus how families read your energy when you're sitting there with open curiosity, asking them about who they are. And so that's that's to your point. I approach with curiosity. I love when there are obvious references in the room to spirituality, whether it's verbal. You know, patients say to me, you know, I have faith or there are statues or religious icons or items on the shelf. I love that stuff. To me, that's that's an entryway into getting to understand this family and asking them, you know, do you mind if I ask you about that statue that's behind you? I have that this week. And there was a wonderful there's always an unexpected story behind this stuff. You know, I think approaching with curiosity and allowing that space is really vital, is really vital. And I think unfortunately, sometimes this gets viewed as window dressing by some people in medicine as as, you know, something, quote unquote, other. I mean, I still sort of bristle when I so frequently hear someone say like, okay, you know, we're dealing with the medical stuff. You know, are you going to go, you know, address the psychosocial and spiritual stuff? And I don't understand.
Elisha Waldman: [00:19:52] I mean, I know what people are getting at, but it's frustrating that those are seen as different. I often find that having these spiritual conversations open the front door to what's happening medically in the room. And that shouldn't be surprising to anyone. And I'll offer you an example. I'll change some details so as not to reveal anything, because this was very recent. But there's a patient who I was caring for recently, a young man and his mother. Very, very complex stuff, very complex, medically, very complex psychosocially, very unclear prognosis with a lot of grayness and tension and a lot of almost adversity, I would say, between staff among family members. And I had read in the chart because I do read chaplain's notes that the previous day the patient had asked the chaplain to read a prayer with the mother. And so the following day, as I was visiting with them and sitting there just listening to what's new, I said, I read this in the chart and I referenced the prayer issue and I said, "This feels very personal, but would you be comfortable sharing that prayer with me? I'd be curious to hear." And both the young man and his mother said yes. And the mother read the prayer and wept while she read it.
Elisha Waldman: [00:21:30] And won't get too into the details of the prayer. But the fundamental aspects of it were that it was about belief in miracles in the face of utter despair. And it told me so much about what was happening in that room. So much. In many ways it articulated- It's like poetry, right? It articulates it in some ways better than perhaps they could have articulated had I asked for a straightforward prose explanation. And what I did with that was just listen. And again, this gets back to that important distinction. I didn't try to address the prayer. I didn't try to answer the prayer. I didn't say, well, what if a miracle doesn't happen? I listened. And actually thanked the mother. I said that that actually felt very intimate and it was very aware of the word because she nodded and said that really was very intimate and thank you for asking us to share it. That has stayed with me. That was relatively recent, but it's really stayed with me. And it's a great example of a spiritual generalist like myself treading up to that line, but being careful about where that line shouldn't be crossed. And also using spirituality, you know, curiosity about spiritual beliefs to really get insight into where a family is. It was so helpful. Um. Yeah. Very beautiful example. Beautiful moment.
Henry Bair: [00:23:01] Thank you so much for sharing that. You described the risks of getting too close to that live wire in imposing yourself upon beliefs that patients may hold close to their hearts. That brings me to something I want to explore next, which is your time working at a Hadassah Medical Center in Jerusalem after you finished your medical training. I imagine that specific religious dynamics must have been a daily fixture in your interactions with patients and with your colleagues at this hospital. Can you tell us what led you to move from the US to Jerusalem and what your expectations were going into this work?
Elisha Waldman: [00:23:45] Great question. You know how I landed there probably shouldn't be altogether surprising given the initial arc that I laid out at the start of this conversation. I mean, I finished my training in the States and realized that I still had that pull to experience life over there. And in the interim, most of the rest of my family had moved over there. So there also was family pull and Jerusalem specifically working in that environment. You know, you're correct. You know, what's what's the visual, spiritual, ethnic, cultural equivalent of a cacophony? It was a wild environment, politically complex, ethnically complex. Jerusalem is a wonderful but challenging place. And actually, I found it easier to engage with it there. I mean, it's so there are two reasons. One is it's so obvious there. I mean, the the religious and ethnic stuff is is so forward there that it's part of the conversation. Whereas here I think people sometimes look at you a little funnier. You have to be more thoughtful about how you're asking about someone's spiritual practice there. It's like it's it's sitting right in front of you.
Elisha Waldman: [00:25:01] I also think part of it is for those of you, any listeners who know Israel; culturally, it's a country that has different boundaries between public and private space, shall we say, than the United States. There's a lot more of everyone's business is everyone's business, which simultaneously is part of the beauty of it and makes it wonderful. And you feel like you're part of a family and at the same time can sometimes make it really maddening and hard because everyone's in your space. But that made engaging with all of those differences much easier. I mean, I have to say that I'm in Chicago now. There's a lot of differences in this city. We may not have a wall the way they have in Jerusalem. The separation wall, I don't mean the the the holy wall, but, you know, the political separation wall. We don't have that physically here in Chicago, but we have every bit as much of a divided society. And in many respects, I find it more challenging here to navigate that because it's a little bit less surfaced.
Tyler Johnson: [00:26:11] So I'm an adult medical oncologist, and not infrequently I will have people, usually people outside of the medical profession, but even some people inside of the medical profession who will say, "How can you possibly do that?" Right? Like, you know, how can you usually this is someone who, for instance, has a family member that's going through something really tough with their own diagnosis of cancer. And so then, you know, as a loved one of that patient, the loved one will say, "good grief, how do you do this every day?" So and I totally get that question and yet at the same time. If I were going to pick a kind of doctor to whom I would ask that question, it would be a pediatric palliative care doctor, right? Like by essentially, by definition, you are working with kids who are suffering and dying. And, you know, you you mentioned, you know, 20 minutes ago or something, the idea that actually in retrospect, as you've tried to sort of trace the arc of your career and figure out how you ended up where you've ended up and everything else, that actually the the fact that part of your job is to accompany your patients and their loved ones as they encounter suffering is actually part of the reason that you're there. That's part of the draw. But for many people, that's going to be awfully counterintuitive, right? I mean, doctors in I think in you know, most cultural depictions, doctors are about fixing things. Right? There's something wrong and the doctor fixes it. And yet you virtually never "fix" anything. Right. You are there with them in that suffering. So talk to us about like, well, two questions. First of all, why would you want to do that? And secondly, how do like what what reservoir do you draw on to be able to do that day after day?
Elisha Waldman: [00:28:17] Yeah. How much time do you have? That's a that's a loaded question. A lot of rabbit holes coming off that one. Yeah. First of all, it's important for me, too, to know that it's not just end of life care, right? So pediatric palliative care is care of children and families facing serious illness. It's often complex chronic illness. So not cancer, but a lot of our patients, in fact, the majority are kids facing things like metabolic illnesses, genetic diseases, neurologic stuff, complex congenital heart disease, things where kids might live for years or decades. And so so it's not just the end of life stuff. And therefore, part of the answer is that we also accompany our patients through joy, through their own finding of meaning. Which can be very beautiful. I agree with you. A big part of palliative care is is getting ourselves over this impulse to fix things. I just had this discussion with one of our fellows this week that sometimes you just have to be present and listen. And create a safe space for a patient and a family to sshare their hopes and their fears, and sometimes that turns into sort of an actionable Outcome, right? Sometimes that discussion turns into an oh, there actually is something that we can do to help alleviate this worry. Didn't realize that was the thing you were worried about or that was the thing you were hoping for. Sometimes it doesn't turn into something actionable. Sometimes it's just about. The relationship, the creation of meaning, the the human spirit being together in the same space.
Elisha Waldman: [00:30:20] And and I think there is great power in that as well. And I admit, again, there are moments where I miss oncology and sort of having a beginning and an end to a protocol and then a five years off therapy like I do miss that. But there are really such rich wonders in palliative care. It can be so deeply fulfilling. So beautiful. And, yes, so painful. And so hard all at the same time. Right. And that's part of the human condition. I mean, I think you- You know, others have spoken more eloquently about this. You can't have love without exposing yourself to loss. You know, I think about my own children, who I love more than anything in the world, and that's all bound up with, even though they're both perfectly healthy little guys. I am constantly terrified of something happening to them. Right. The love and the recognition of mortality are somehow intertwined there. And this gets back to what I said earlier about having a personal hook. There are two things I get out of this work. The beauty of being a part of other people's lives at these times and watching the wonder of a families being together as they go through the fire or as they experience highs or lows. And then I do benefit from going home and asking myself the personal challenges, right? Where where do I find those highs in my life? Where do I find that richness in my life? Where might I identify suffering in my life? And what might I do about it? Or or do I need to find a way to be present with myself in some of that suffering and not fix everything? It's really I get both of those.
Elisha Waldman: [00:32:24] That's my sort of bigger answer. I mean, the more concrete answer, because I do get asked often, you know, how do you do this? I'd be lying if I said that this was easy all the time. I'd be lying if I said I had an easy answer. You know, my wife is probably going to roll her eyes as she hears this. You know, I struggle at times with. With where to put this. But it's beautiful and I have gained a lot from it. I often say this. It is it is not an accident. I don't believe it's an accident that I only settled down and started my own family. Right after I completed my palliative care training. This work. Brought me to, and that was relatively late in my career. This this work brought me to. A different way of understanding my own soul and a different way of understanding my own being. Not that we don't have our ups and downs, but that it allowed me to be with other human beings in my own life in a certain way. So there is something. Selfish in the work as well. I get a lot out of it. It's very beautiful.
Henry Bair: [00:33:40] Earlier you talked about the fulfillment you derive from helping your often very young patients navigate through the most challenging of situations, through moments of intense suffering, and despite that, guide them to discover meaning for themselves. Can you tell us about a time when you were able to facilitate that process?
Elisha Waldman: [00:33:59] Yeah, that's a hard question. It's hard to come up with one magical answer. I mean, I guess I want to preface it by being careful in how I'm presenting this. I would prefer to live in a world where all of this was fixable. And maybe that's obvious, but I feel that I need to state that as I'm talking about finding beauty and meaning, because I'm guessing that anyone who's dealt with serious illness in their life and has found some sort of meaning. My guess is they would trade that meaning for having their loved one with them. Right? And I think that's an important point that I just want to make. Given the choice between the two, I would take people surviving and being whole.
Elisha Waldman: [00:34:53] Meaning is such a complex, impersonal thing. And I think that's part of why it makes answering your question with a magical story so challenging, right? Because it's not as straightforward as kids who are stuck in the hospital and who are, you know, approaching end of life and can't get out. And the only thing they want is, you know, their puppy dog to come in. And, you know, I think many of us in palliative care have stories like this where we've stuffed the puppy dog into a duffle bag and quietly snuck it into the ICU. I am not the only palliative care person who has ever done that.
Elisha Waldman: [00:35:31] You know, that's a great story and it's wonderful when we do that. And it's wonderful that it brings a smile. It feels a little trite compared to what I'm describing. I think part of what you're getting at is this ineffable mystery that many of us, not just palliative care providers, behold at the bedside. And I think this is part of what has drawn me through my career into the care of seriously ill people. There is something that you witness. You know, I've been in the room towards the end of life holding myself back. The the sides in a darkened room with a small lamp by the bedside as family members surround a child. And all sing, a religious hymn that's meaningful to them. I have one image. Even as I'm saying this, I can picture a family in Jerusalem that's never left me. It was 15 years ago already. You know, can I put into words what was happening in that room? I don't think so. It's very hard. But there was there is power. There is meaning, there is mystery, There is majesty. And yes, would I rather that kid had leapt up out of bed and said, you know what, I feel better. I'm ready to go home. I'd take that in a heartbeat. But barring that, there was something powerful happening in that room. And I think that that is that's part of the gift that I'm getting at here.
Elisha Waldman: [00:37:10] And I think part of our job is palliative care providers is creating the opportunity for those, creating the space for those. It's not so much. Making the meaning happen, right? Like, it's not that I've got the meaning in my pocket and pull it out and say, Oh, what you really wanted was the puppy. Or what you really wanted was the lollipop. It's creating the sacred. I think it's an apt word. A sacred container. The space, the canvas, whatever term you want to use for those things to happen. And I'm sorry to say that I think in modern medicine when we operate in a constantly go, go, go, go, go fashion, right. Which we've all witnessed that as well. Right? We sort of get into our our medical minds and. And do do do do without stopping to ask questions. I think there are opportunities lost. That's where we don't create the space. And I do see that as a big part of our job in palliative care is not stopping the do do do. Not stopping other providers, but somehow opening up what might otherwise be a really narrow crack, a narrow space, opening that up into a space. Where something else might flourish, even amidst all the suffering and sadness and other things that are happening.
Tyler Johnson: [00:38:46] So I sort of think of myself as an oncologist who has a palliative bent in a lot of ways. And the reason that I'm a medical oncologist is because I love, as you said, I love trying to fix things. I love trying to make cancers go away. And my favorite thing is I don't do very many because mostly of my family commitments, I don't do very many weeks a year in the hospital anymore. But I, I circled them on my calendar because I love the cognitive puzzle of trying to figure out all of the, you know, where's the anion gap coming from and how do we make the blood pressure better and how do all the medications play with each other? And all that stuff I think is fascinating. And I love that. And I especially love it when it results in somebody getting better and going home and even sometimes being cured. At the same time, I think most doctors go through a phase where we want to imagine that we can fix all of the things right? And we want to imagine that if we just find the right intervention or the right medication or the right thing, then everybody can get better and can go home happy. It doesn't take very long, usually not even all of intern year for experience to disabuse you of that notion.
Tyler Johnson: [00:40:09] Right. But that's sort of where the path splits, right? And one branch of the path is to sort of know that but never really deal with it or encounter it and just go on fixing things. And when you can't fix them, assume that it was a mistake in the system or whatever and you'll just fix it next time. Right? But another branch in that path is to recognize that as the Buddha taught - The universe is suffering. And I'm sure I slaughtered that quote, so forgive me, but the gist is there. But but the point is to say, I think all religious traditions have a way of grappling with the fact that experience will teach us that to be human sometimes is to suffer. And I think that when we recognize that medicine cannot bend the human condition to a place where there is no suffering. Right? No matter how much the technology advances, no matter how many chemotherapy drugs we come up with, no matter how many cardiac stents we deploy, like none of that is going to obliterate suffering from humanity. And so then the sort of deeper level question is when you come up against suffering, that cannot be erased. That just is. Then what?
Elisha Waldman: [00:41:42] Yeah. So two things come to mind. So let's put a pin in that last question of them. What I mean, want to share quickly because you're reminding me of a really pivotal patient experience in my own career when I was still practicing oncology and was just moving into the palliative care realm and didn't really know what I was going to do with it. And this was in Israel, and I was caring for a young woman who's modern, Orthodox woman in her 20 seconds who had a solid tumor and terrific, terrific woman. And, you know, I treated her for nine months and, you know, all the good stuff in oncology, like ups and downs. And, you know, I felt like really close with my patient. And on the last day of her, she had already finished all her treatments. And we were getting ready to send her to what we call the long term follow up clinic, you know, where patients sort of get there every few month check ups. So it was my last formal meeting with her as her oncologist. And I've had a speech that I used to give my patients, you know, thanking them for being apart and what to expect.
Elisha Waldman: [00:42:48] And I had just started this course in Boston about palliative care. And, you know, this is the sort of thing you never forget. She was across the desk from me in my clinic room. I was at the computer and I was writing a prescription for her just for an antibiotic that she needed to continue. And, I mean, it's a shameful memory. I without even looking up at her. Probably looked up at the beginning, but I was looking down for the punchline here. I said to her, You know, I've known you for a long time and I'm wondering if I can ask you a question that I've never asked you. And this was spurred by my course in Boston. I said, if you're comfortable sharing this with me, I'm wondering what this past year has meant to you in terms of your own spirituality, sense of community, religious life. I'd never said a word about any of this to her. In the over nine months I've been treating her. And I'm looking down. I asked that question and I'm looking down, finishing the prescription. And somewhere in the middle of writing that prescription realized that the room is silent. And I look up. And she's weeping.
Elisha Waldman: [00:43:58] This is like years later and it's still hard for me to retell the story. She's weeping and she proceeds to tell me. I mean, for non-oncologists here, you have to realize, like for an oncologist, this is your proudest moment, right? Telling a patient they're done with treatment and go off to long term follow up. Right? You feel great about it. Patting yourself on the back. She proceeds to cry. It must have been 30, 45 minutes telling me that she had always been observant and didn't understand why God would do any of this to her. About how it doesn't matter that we did ovarian cryopreservation, in the eyes of her community she's now damaged and she doesn't know what this is going to mean for her life as as an active person in her religious community. I mean, and on and on.
Elisha Waldman: [00:44:48] And I Felt crushed. As a clinician, I was so proud one moment of what I had been able to do. And then so starkly aware the next minute of everything I had failed to do. And this is a happy story, right? She's better, by the way. She's still better. She's better. She got through the cancer. This isn't, you know, a tear jerking palliative care deathbed story. And yet, she completed her therapy spiritually challenged in a way that, again, I might not have been able to fix personally, but which I could have been attuned to and perhaps helped guide her towards better support. And and that was really such a pivotal moment for me in my career of recognizing the importance of introducing curiosity about spirituality early in the course of treatment. That is that, as you said, it's part of the human condition.
Elisha Waldman: [00:46:04] I mean, my six year old has cashew allergy. I think that was a spiritually challenging experience for me and my wife. And I'm not saying that lightly. Right. I mean. It is hard being a person and having your integrity threatened in the face of the universe. It is hard seeing someone who you love have their integrity threatened even when the story ends out okay on most levels. There's a lot going on under there, and that story really made me realize how how we need to move this stuff upstream.
Elisha Waldman: [00:46:41] To answer more directly the end of your question of what do we do about this when we're faced with intractable suffering? Because I do think that's an issue. In 25 years in medicine I've seen some amazing advances. I mean, think back to 25 years ago. We're doing stuff today that was science fiction back then, and it's amazing. The one thing I'm not convinced that we're doing better is addressing suffering. And in some respects, I think we're doing a little bit worse because we're awfully good at applying the science fiction without. Sort of pausing along the way to think about what we're doing. I don't know the answer when you get to that molten core of suffering, when you sit with a patient. Who's just in the fire and you don't know what to do. I am not sure, beyond presence. Human presence. How to address it. There is an ineffable mystery that is great as well as terrible. Sitting at the center of all of this. And, you know, it's an honor and a challenge and beautiful and awful to be a part of it all rolled up in one. And that's what keeps me going.
Henry Bair: [00:48:13] I think the issue here is that in medicine we are pretty good at treating pain, but not so good at treating suffering. We're also not so good at distinguishing the two. I've seen in my time working in hospitals many instances when a patient's physical complaints have been addressed and yet their suffering has not. And clinicians largely aren't very comfortable with this and aren't quite sure how to deal with it. In the patient story you shared, this woman was in a quasi-existential crisis regarding the implications of her experiences on her relationship with God. These kinds of issues come up quite a bit in medicine, and yet we don't talk about it. So let me ask you this. What is the difference between suffering and pain and what can we do after we recognize the difference?
Elisha Waldman: [00:49:09] Yeah, there's a reason why that's a common phrase in the English language, right? Pain and suffering. They're related, but different. Pain can certainly cause suffering. I think we can experience pain, right? Physical pain without suffering. I mean, when I get a paper cut or, you know, Nick myself while I'm cooking and get lemon juice, I would say I'm experiencing some pain. Certainly not suffering. Right? Suffering is deeper, right suffering and I sort of alluded to this. I used language earlier which draws from Eric Cassel, who is one of the foundational thinkers in palliative care who wrote about suffering and the mission of medicine. When I made a comment earlier about You know, feeling one's integrity threatened in the face of the universe. You use the word existential. Suffering has to do with a threat to our sense of what makes us human, to our autonomy, to our sense of being, our sense of worth. And I see it on many levels. I mean, again, I don't want to make this trite, but I do think it's instructive. These conversations become hard when when you only talk about, you know, sort of moving and powerful stories at the deathbed. Because I think then people start to think like, oh, this is just end of life. And, you know, I'm a parent of two small children, as I've said, I see this in them. They've taught me so much. My four year old had his tonsils out not long ago. And I really mean this not in a trite way. I mean this completely seriously. For the week afterwards, we had to be extremely attentive in terms of pain medications. And you sort of do Tylenol, Motrin, alternating, and you get up all night and it's like having a newborn again. And I think we did a great job for over a week. He said, I'm okay here and there, a little bit of a sore throat, but not in pain. But there were moments where there was something deeper happening where he was upset. Because his sense of the world which is my mom and dad, protect me and love me. And I go to junior kindergarten every day and I have fun and I come home. Right. It's a simple world. But that got. Rocked that got threatened. And there were moments I don't think I'm exaggerating and I admit I'm attuned to this and look for it. But he appeared perturbed. But not in pain. A number of times in the first few days where I think he was struggling with, Why is this happening to me? Why? Why am I feeling terrible and you're not protecting me? And I can't just go to school. And I again, I would not equate that in a million years with the suffering that goes on at the bedside of someone with advancing cancer or progressive metabolic disease or what have you. I admit it is not the same, but I do think it's instructive to look at the other corners of the human experience for where this sort of stuff arises, because it informs the bigger picture. It's it's everywhere. And I think we make a big mistake when we really only notice it at the bedside in extremis. Right. When do they call the chaplain? At the end, frankly. When do they often call palliative care at the end? It's unfortunate that that's the point where suffering tends to get noticed and we need to be more attentive in all the other corners of the human experience.
Tyler Johnson: [00:53:14] Some of your comments have led me to reflect on two things, two comments from other sources. One is all of this talk about what do you do when you get to that? What you call the molten core of suffering reminds me that last year we had Anna Lembke on the program, who is a world expert in addiction, and she was talking about how she works with a lot of -She's also a psychiatrist- a lot of Stanford students who are, in effect, addicted to dopamine in many different forms, largely from their virtual lives. Right. Likes and retweets and whatever. She described that what she sometimes has to do when they're trying to rediscover meaning in their lives is advise them to go off of all of that stuff completely. Right? Like take a weekend away where you don't take your phone with you or whatever, and that often that's like detoxing and that what they end up with at the end of all of that is they go through this period of almost literal physiologic withdrawal and then are forced to confront. I have never forgotten this phrase, what she called the Great Quiet and that it was sometimes exceptionally difficult for them, for us, to do. But it was that confrontation with the Great Quiet that then allows things to open up into a world of deeper, more resonant meaning.
Tyler Johnson: [00:54:41] You have to push past the dopamine addiction, right? To to have that open up. And I feel like in medicine, I don't know if I would call it dopamine per se, but there's often this this scurrying about, right. This busyness of checking boxes and doing this and doing that and sort of going from place to place that. But sometimes, if you're lucky, you will have a chance to encounter the Great Quiet in the presence of one of your patients, whether your patient is a four year old status post a tonsillectomy or an 80 year old who's coming to the end of their lives.
Tyler Johnson: [00:55:17] The other thing that that also made me think of is there's this wonderful there's a play that was written about when CS Lewis fell in love, right? So he he falls in love with a Jewish woman from New York, and he's spent his entire theological career writing about suffering and whatever else, Right? And then just after they get married, she's diagnosed with metastatic cancer and within a few months dies. And so they go on what is sort of nominally their honeymoon. But she's already very sick. And as they're sort of looking out over this rain soaked vista somewhere in the English countryside, she starts to talk about what's going to happen when she dies. And he says, I don't want you to talk about that. And she says, We can't not talk about that because that's part of the reality. And he says, Yes, but I just want to be here and now. And she says, No, but you don't understand. The pain then, is part of the happiness. Now. The loss then is part of the joy now. And I think that there is something, you know, when when we get to that moment sort of where there's no deeper place to dig with our patients, where we confront the Great Quiet, that's part of the great truth, that doctoring allows us to glimpse in a way that very few other people are able to glimpse. Maybe, you know, people who are in the you know, who are in the cloth. Is that understanding that both of those things come together and that they can't be untangled from each other. And that is, I feel like one of the the deep truths of the universe that medicine will teach us if we let it.
Elisha Waldman: [00:56:53] You're you're reminding me of a great palliative care saying, which I learned as a trainee. "Don't just do something. Sit there." Right. It's a great palliative care line. Sometimes that's what you got to do. Stop running around. Stop trying to fix things. Stop with the busy work and checking the boxes and just sit there with your patient in the Great Quiet. It's a great phrase. The Great Quiet.
Henry Bair: [00:57:25] With the last few moments we have, I'd like to ask you about any advice you have for clinicians and trainees. As you've reminded us throughout the conversation, the lessons you have learned as a palliative care doctor are applicable across all of medicine. So specifically, what advice do you have about what clinicians can do today in their work to better stay present with their patients and comfort them in times of suffering?
Elisha Waldman: [00:57:56] I would say it's easy.Or I'd say the first step is easy. The bigger picture is hard, of course, but just two words. Be curious. So much of it boils down to being genuinely curious about the person or family in front of you. Which I know especially for trainees, can be hard because you've got your long list of things that you're trying to get done in the course of the day. And you tend to enter the room Sort of outcome focused and trying to get something done. But honestly, sitting down and and in general, I mean, literally sitting down. It's amazing the same amount of time spent in the room sitting down versus standing with one foot out the door. Works wonders also for the family in terms of their sense of you. Don't be afraid to ask a curiosity question. And for me, it's often the other clues in the room that we think of again as window dressing or nothing, but often turns out to be a dawn to something really meaningful. Can I ask you about. The picture on the wall that you've put up there or, you know, when it's kids, you'd be surprised. You ask about whatever's stuffed animal they have. There's often a story there. If someone has an unusual name, it's another good palliative care trick we often ask about. It's a beautiful name. Is there meaning to it? Nine times out of ten there's some story from the pregnancy that is so rich, I'd say, pregnant with meaning. And so it's a real be curious, not just what do you want? Right. That's I think that's often how medicine is phrased. Right? What do you want? We can do this. We can do that. Which one would you like? Often in medicine, the answer is I'd rather not have either of those, thank you. But. But the curiosity question of who are you? What do you do when you're not here? What's a good day? What do you do for fun when you're not sitting here listening to me? Those curiosity questions are so critical in terms of relationship building, in terms of information that you might gather, in terms of things you might use down the road. And so that would be my number one biggest piece of advice.
Tyler Johnson: [01:00:28] Well, thank you so much, Elisha, for being with us. We really appreciate your spirit and your thoughts and the clearly conscious way that you have cultivated such a mindful practice of medicine over many years. We we greatly appreciate you spending this time with us.
Elisha Waldman: [01:00:44] Well Again, I'm honored to be a part of this. I really appreciate you guys having me. Thanks.
Henry Bair: [01:00:52] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at thedoctorsart.com. If you enjoyed the episode, please subscribe rate and review our show available for free on Spotify, Apple Podcasts or wherever you get your podcasts.
Tyler Johnson: [01:01:11] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient or anyone working in health care who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [01:01:25] I'm Henry Bair.
Tyler Johnson: [01:01:25] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.