To be alive at all is to have scars.
—John Steinbeck
This transcript of the discussion has been edited for clarity and length.
Mike Sacopulos: My guest today has a deep understanding of the experience of patients acquiring scars — a process often marked by suffering, which is the central theme of her upcoming book. As humans, our instinct is to shy away from the topic of suffering; confronting the pain of others can make us uncomfortable. However, my guest has a unique ability to uncover the silver lining within suffering: hope.
Dr. Jennifer Clark is an allopathic physician trained in internal medicine, pediatrics, and hospice and palliative care medicine. She’s the author of the book, Suffer. Jennifer Clark, welcome to SoundPractice and let’s start with my interest in why you became a physician and your career path that led you to write Suffer.
Jennifer Clark, MD: As for many of us, it’s kind of a long story. The maternal side of my family has a history of working in healthcare, lots of nurses particularly, so it was a normal part of our day-to-day conversations around the family table. I kind of avoided it, because I loved traveling, and maybe I had a little bit of rebelliousness with regard to the family way.
And so I went to school, traveled, and found no satisfaction in that work. I have a business degree and worked in the corporate world and developed those skill sets, but it didn’t bring me purpose and meaning. I did a lot of soul-searching in my mid-20s, got back to medicine, and because of that maturity and because of that seeking and longing and real interest in vocational life, I found myself at the door of medicine again and walked through it. I was lucky at the time that hospice and palliative medicine was introduced to me early in my career and set the stage for what would become a pretty interesting practice, between developmental, psychiatry, psychology, and pain and suffering in hospice and palliative medicine, which all came together in the book Suffer.
Sacopulos: You open the book with a great quote from The Misfit’s Manifesto, by Lidia Yuknavitch, which has to do with the origins of hope. Could you talk a little bit about hope and suffering?
Clark: I think when I was writing that, or my intention when I was writing that, is we tend to psychologically or spiritually bypass discomfort. And unfortunately, when we experience a difficult event, a lot of euphemisms are thrown out: “There’s meaning to this, it will all work out,” or, “God has a plan,” or what have you. And these are more about the seer, the person that’s watching someone experiencing suffering and their discomfort and — whether it’s pity, sympathy, or even empathy to some extent, they just don’t want to see it and so they throw out this euphemism like, “Oh, everything will work itself out,” or whatever it happens to be.
My intention in writing the book and bringing that to the forefront is that we cannot placate suffering, we can’t bypass it. It was a call saying, I’m willing to sit with you and see it fully, fully feel it, fully know it, because it’s only from there that true hope for sustained change, for growth, can be seen and felt. And so it’s about really saying, “Okay, suffering is actually a huge part of the human life, and so how do we do that well?” How do we do that better versus this bypassing that the wellness industry, particularly, does to people and, unfortunately, with the collusion of the healthcare industry,.
Sacopulos: When you say sit and witness it, you’re saying for the benefit of both the person who is suffering and the witness, am I correct?
Clark: Totally, yes. Yes, because we don’t know how to do that. We haven’t been taught that, in Western culture particularly. We have this tendency, at best, to pity someone. If you look at pity, sympathy, empathy, and compassion along a continuum, pity is kind of for those of us — I’ve trained in Charleston, South Carolina, I have picked up the euphemism, “Bless their heart” — that kind of thing.
There are people that have that pity of just like, “Oh, I see you’re suffering, but oh gosh, bless your heart.” And then there’s sympathy, which is, “Oh, I see you’re suffering and this is overwhelming for me and I can’t do anything about it.” Empathy, where a lot of us as clinicians sometimes get caught, is being able to actually empathize and be with someone, but we tend to feel like we have to fix it and when we can’t, it tends to get stuck within us internally. As a result, we practitioners end up with secondary trauma and secondary suffering. It’s really about this compassionate act where you know where you begin and end, what you can offer to someone in bearing witness so that power gets transformed in the compassionate witness. So yes, it’s for both parties involved.
Sacopulos: The book Suffer is very well written, and I have a sentence from your book here: “Now, through my own experience of anguish, I understand that suffering is the compass that allows for the wise navigation of life’s choices and vacillations, the working on our life’s map.” A great line. Do you believe that things such as age and education allow individuals to use the compass more effectively?
Clark: Arguably, if you think those things contribute to your own human development. But as I’ve borne witness to, we have highly educated people who haven’t moved through their full potential as a human, so as much as those things have contributed to the development of a human from a dependent to fully independent, to ideally an interdependent person where they have a very stable sense of self and understand that there’s a higher level of being that moves you through. As you will read in the book, Maslow’s hierarchy of needs moves toward not only interdependence, but ultimately the human ideal of self-actualization and transcendence, and if those things contribute to your development, then so be it. Unfortunately, we often see those things actually reinforcing a negative sense of self, a sense of self that is dependent upon external accolades and validation. As long as those things contribute to your development, then yes, but that’s not guaranteed.
Sacopulos: Nothing is guaranteed. Let’s take a step back for a moment. For whom did you write the book?
Clark: It was a book that I really wished I had had during a time of my own personal experience, so it was written as a therapeutic book that I wished had been out there. There’s that selfish past part of it. As my editor said, it’s literary academia, so it vacillates between storytelling and science. For people who are interested in really exploring this, it has to be kind of both, and weaving between those things. This was a love letter to my patients and my colleagues whom I have sat with for nearly three decades now, saying, “Can you do this in a book? Can you do this some other way that I can come back to and visit it in the future?” It is the combination of those two things, a book I wish I’d had on my own and a book as a love letter to the people that taught me across my life.
Sacopulos: It’s fair to say that it is not exclusively for clinicians?
Clark: No, no. If anything, it’s recognizing that clinicians are humans too, and we don’t talk about these things. If I were to look at the progression of my own practice, I’ve learned to practice at the one-to-one level, the one-to-system level. This book was an attempt for me to go to the one-to-the-societal level of really challenging norms that we have socially that have contributed to suffering across the ages, and I’m doing that through the lens of being a physician, but it doesn’t exclude any populations from participating in that discussion.
Sacopulos: It certainly seemed like a great book to get one ready for education and experiences. I think the word for that’s propaedeutic — it prepares you for a proper education, and I found much of your book did that for me. It was, as I said before, extraordinarily well-written. Tell me about the process of writing Suffer. Did it impact your clinical practice or just record prior impacts on how you practice medicine?
Clark: Oh, I would definitely say the former. It was an ongoing process, but the writing really forced me to move back into a beginner’s mindset, because when I express myself, it’s usually through speaking. I’m used to using the spoken language as a form of healing in my practice. But in 2017, I would arguably have entered into my own second adolescence, as many of us do, moving from fluid wisdom and decrystallized wisdom and all of the things that we talk about in second adolescence. I was using my meditation practice in a way to kind of foster that growth and had one of those very intense transpersonal experiences. This book pretty much came down, if you will, in that meditation process. I wrote for 24 hours straight, essentially to get the nooks and crannies down. People who live with that creative force, I don’t know how they do that on a routine basis. It was a wild ride for those couple of days.
But it laid down this whole kind of concept, this juxtaposition of developmental health and developing as a human and how suffering is actually a reflection of that. For the seven years that led up to my introduction to my publisher and the ultimate outpouring and writing of the book, I just wrote every day, created context for it to show up, and I have several notebooks and research that was associated with it. When the time was done and the model was really well developed, and I had taught to it and I had spoken to it, my publisher showed up, and it took a nine-month process to actually get it into the formal codification that it is today. Arguably, when you go through an experience like that and you continue to create that context, it can’t help but personally transform you. You move out of being just the observer into a full participant and kind of a non-dual experience of being not only the teacher, the student, but also the lesson all in one fell swoop.
Sacopulos: You argue suffering has a definition or a language problem. Can you explain the problem as well as its significance?
Clark: I was really lucky as a young attending. I was exposed to Eric Cassell, who’s well known throughout our community, and actually across pretty much the human community as kind of the godfather of suffering. He wrote “The Nature of Suffering and the Goals of Medicine,” which was published in The New England Journal of Medicine in 1982. He ultimately wrote a book that grew out of that article, and he was one of my mentors. We had a lot of conversations around suffering, and I’m medically trained in pediatrics, so I often have taken care of babies in utero that were diagnosed with fatal illnesses, pediatric populations, young adult populations, as well as mature adult populations. And Eric’s argument about personhood and suffering and the relationship between those things was always really confusing to me.
So in my own work, I used to talk to my patients and my colleagues and my friends and family about, “Okay, what does this word really mean to you?” And I found that the muddiness comes from the way we use it in English terms — it’s not so much in other languages, but in English we use it as talking of a causal event. As I mentioned in the book, there is, I suffered a heart attack, which is I underwent a difficult experience, kind of thing.
The other part, the part that gets really muddy, which is a more subjective versus objective kind of experience is that I had a heart attack but did not suffer. Very different meanings of the exact same word, and people confuse them. For me, where it really started to play out was in my research around young adults, so 18 to 40, who were really suffering from serious illness or at end of life. I would see them, despite their mortality, just go on; a good chunk of them would actually go on to self actualize, particularly if they were in that 25 year, 26 year age range. There was also a good part of them that actually regressed back to childhood, and I was really curious about what launched that.
When I talk about the patient, Lily, in the book, she’s an amalgamation of young adults that I’ve taken care of who were just like, “I’m not going to allow my disease to define me, it’s just one of the experiences that I’ve had in this lifetime. If it happens to be short, great, fine, whatever.” And it was just like this mortality salience and this awareness of one’s death did not interfere or cause them to suffer in their own living. And so from there, I tried to start building a model toward that. When you look at it from that lens, all it is is that suffering is a chronically unmet basic need, and your life will continue to present you back to that need until you appropriately attend to it.
Sacopulos: You mentioned Lily, and it seems to me that medicine is often best taught through stories. Is there a particular patient who comes to mind when thinking of what you’ve learned through suffering?
Clark: It’s that group of young adults that I just mentioned. It was interesting — I was a young adult myself studying young adults facing a serious illness. So for me, that shaped my own development, because I knew what the possibilities were. I saw these young people, these colleagues of mine who were living with serious illness and facing their own death, and yet they were able to catapult themselves through this developmental continuum.
For a long time, I thought that was part of the dying experience, like the, “Okay, well . . .” And then I realized it was actually looking at Maslow’s work and his discussion of mortality salience, so the awareness of death in one’s own life that really catapulted that. That was not a privileged experience only for those who are actually dying, but was also for those who actually deal with death, walk in the valley of the shadow of death and grief and loss and willingness to lean into the difficult experiences of life that were afforded this ability to kind of catapult your way through the developmental continuum. For me, it’s the young adults that I walked side by side with as a young adult myself; learning from them as patients taught me to be not only a good doctor, but a really good physician and now, ultimately, a healer and kept moving me through that continuum.
Sacopulos: Does near constant exposure to patients suffering desensitize some individuals in your profession to suffering?
Clark: Yes, I do think it does, because we don’t talk about it. I’ll put on my Chief Medical Officer hat. For a few years I served as a chief medical officer of a large healthcare system and learned to kind of peel this onion of when we started looking at the broken-downness of the system and what was wrong with it. There are the quality and safety issues that came out with the clinician burnout issues that now are leading arguably into this whole idea of leadership, and loneliness is the next layer. But when you look at burnout particularly, and look at it in the lens post-pandemic, I think, but the moral injury that medicine does to clinicians, that depersonalization aspect of burnout, I think both of those things. . . We’re taught to compartmentalize. I mean, if you look at the hidden curriculum of nursing, they enmesh themselves, they actually lose themselves within becoming a “patient advocate.”
And our hidden curriculum in medicine is, arguably, do not engage in any way, shape, or form, you need to become X or Y or Z. There is no emotional engagement. So in that entire spectrum, there is no one that’s safe. I think when you’re not used to being either empathetic or compassionate — if you can’t move that empathy into a compassionate act — it gets stuck within. As a result, the only way to deal with that stuckness, because we don’t offer the ability to talk about this, is to become desensitized, because you just can’t take on anymore. I think that’s one of the failures of our system — we’re asking you to be compassionate, we’re asking you to be fully present as a human, yet we don’t teach you how to do that. We don’t create circumstances or systems that foster that in a productive way. So I think yes, we have a lot of people who are suffering from the suffering of others.
Sacopulos: Medicine has traditionally been both an art and a science. Has much of the art been lost?
Clark: Oh, that’s a great question. We’re really good at teaching you how to be a doctor, which is gaining knowledge, identifying patterns — physicianhood is about being able to somewhat integrate that knowledge into a practice. But the art of medicine is really in healing, which is an intuitive, full-person experience of being in service to someone else or a system of people, or a group of people or a community. I think that art has been lost because we’re not teaching it any longer. I was really lucky to have had several mentors who modeled that for me, so I kind of knew where I was headed. But it’s not something that’s asked of us anymore. People are having to deal with more computer-based things, whether it be the EMR or AI and things like that. When you’re dealing with all these high-level computative information gathering pieces of data, the art of human intuition tends to get lost.
Sacopulos: Don’t you find that patients crave that, though?
Clark: Totally. Oh, yeah. I mean, completely and utterly. To use Dan Siegel, who’s a pediatric psychiatrist’s words, “As humans, all we want to do is feel felt, to be known,” and that requires a deeply committed and compassionate person to do so as a service to others. Being able to not only be empathetic — but again, that empathy has to be moved into compassion, which is empathy in action. And we don’t teach that. We don’t foster that. When we looked at the science in 2011 with the moral compass of medical students into residency and how the moral compass is degraded through medical education and training, I think there were attempts to rewrite that story, but it became protocolized. And although Atul Gawande had never imagined The Checklist Manifesto to become what it is. Unfortunately, people are trying to make this very personal, very intuitive practice into one that’s automated. And patients don’t want that, they just want to be seen, they want to be felt.
Sacopulos: Do you think that that’s a disconnect beyond the teaching of medicine? It seems to me that we don’t compensate for it either. There’s not a CPT code for that.
Clark: No!
Sacopulos: But I think that you and I would agree that patients value that highly, but maybe third-party payers don’t.
Clark: Well, the system is the system, and I will tell you, the system’s been set since the 1600s, when the mind-body split occurred. I mean, look at our healthcare system, we have one for the body, one for the mind, and both of them require you to have pathology to get into it. It’s an ode to pathology. It’s disease oriented. It’s not human oriented, and it’s not health oriented.
So we keep asking the system to be something that it’s not. The system pays based on disease processes. It pays based on pathology. And arguably, our job is to create a true salutogenic versus pathogenic model of healthcare in the community where we live and whom we live with, and how we live our lives on a day-to-day basis. I think there are a lot of us who have moved through second adolescence into these later parts of our careers that have gone into these more innovative models of kind of saying, “Okay, I know how to deal with your diabetes, but I can’t fix who you live with and the stress that you have that raises your cortisol and puts your glucose up,” and all those kind of things. So how do I address the upstream parts of that in a way that creates the context for the content of people’s lives to be much more consistent with who they are and what matters most?
Sacopulos: As our time together grows to a close, are you hopeful healthcare will make better use of the compass of suffering?
Clark: I hope so. To your point about the system creating this dehumanized experience, hopefully by giving this diagnostic and therapeutic tool to people, they’ll be willing to kind of lean into their suffering, both from the sufferer side and from the healing side. Then together they can see whether they’re in fear, whether they’re in ignorance, whether they’re in isolation, whatever it happens to be, that they’re suffering, that they can find some shared space to say, “Okay, this is the need we need to focus on.” Whether it be your safety, whether it be connection, which most people are suffering some loss of, it gives language and shared space to come out from under that unbearable, uncontrollable, unwanted quality that suffering tends to bring in someone’s life.
Sacopulos: The book is Suffer and it’s important. My guest has been Jennifer Clark. Dr. Clark, thank you for being on SoundPractice.