Medicine with a Soul

Kate Bowler:                       Hi, I’m Kate Bowler, and this is Everything Happens. Look, the world loves us when we are good, better, best. But this is a podcast for when you want to stop feeling guilty that you’re not living your best life now. We’re not always having an eat, pray, love experience. I used to have my own delusion of living my best life now. I’m a Duke professor, wine and cheese enthusiast, wife and mom. Instagram gold. Then I was diagnosed with stage four cancer. That was four years ago. And I’m still here. And now I get it. Life is a chronic condition. The self-help and wellness industry will try to tell you that you can always fix your life. Eat this and you won’t get sick. Lose this weight and you’ll never be lonely. Believe with your whole heart and God will provide. Keep this attitude and the money is yours. But I’m here to look into your gorgeous eyes and say, hey, there are some things you can fix and some things you can’t. And it’s OK that life isn’t always better. We can find beauty and meaning and truth, but there’s no cure to being human. So let’s be friends on that journey. Let’s be human together.

Kate Bowler:                         There are people who are driven to do their jobs because of the people they meet. They keep their hearts soft. They see the people behind professional interactions. But there are forces which make it very hard to stay that way, especially in medicine. In today’s conversation, you’re going to meet someone who really helped give me more language about what helps us all stay connected to the people we serve. She describes it as fast ways of doing things and slow ways of doing things. Fast and slow medicine. Dr. Victoria Sweet is an associate clinical professor of medicine at the University of California, San Francisco, and she wrote a beautiful book called Slow Medicine, for which she was awarded a Guggenheim Fellowship. Fast medicine is technical, methodical. It goes for the quick fix. And sometimes that’s great. You break your leg, great, you get a cast. You have stomach pain, there goes the appendix. It’s fast. Slow medicine is relational, personal. It goes for the bigger story. It might need some context and some personal history. You had cancer, but now you have to think about quality of life. You have a mysterious illness. But what helps put a diagnosis together? Time. This is going to take some time. Dr. Sweet loves that bigger story. She’s a historian and a doctor who practiced medicine for 20 years at Laguna Honda Hospital in San Francisco, a place she wrote about in her book, God’s Hotel. Her work pioneers a radically compassionate approach to medicine, and I am so excited to talk to her today. Victoria, hello.

Victoria Sweet:                 Hello, Kate. And thank you so much for having me.

K.B.:                                     I’m going to start this with a very obvious pitch for your friendship. I know you’re a historian who studied a 12th century healer and nun named Hildegard von Bingham. And I just thought you would be very interested to know that I spent a semester as the only stagehand for a one woman play about Hildegard von Bingen called something amazing, like Hilda or Bingen, it was very powerful. A lot of Lutherans watching it in a very tasteful church in the Midwest.

V.S.:                       Really. Did you write it?

K.B.:                      No, I just helped a very passionate pastor perform it.

V.S.:                       Boy, that sounds, do you have it recorded?

K.B.:                      No, I do not. I am hoping that it is written somewhere. Should I find the videotape, I will immediately send it to you.

V.S.:                      Mm hmm. I see. Ok, I am beginning to get your flavor here, Kate.

K.B.:                      You were made very painfully aware of the punitive side of bureaucracy in healthcare when your dad was admitted to the hospital. If you don’t mind telling me what happened.

V.S.:                       My dad at the time was ninety six years old and he had a great life. He was pretty with it. He had developed a seizure disorder about 10 or 15 years before he was taking meds, periodically stopped taking meds and had a seizure. This particular day that we got into the hospital. He was out having lunch with my mom. He was all fine. He had a grand mal seizure when he got home. She made the mistake of calling 911, they saw old man with grand mal seizure, took him to the nearby lovely community hospital. When he came into the emergency room, they said, Oh. Old man with grand mal seizure. He must have had a stroke. They did a C.T. scan in the E.R. and didn’t see anything, but nevertheless, old men who had grand mal seizure must have stroke, and he got admitted with the diagnosis of stroke. I showed up about 12 hours later and was like, well, he didn’t have a stroke, but he had a grand mal seizure because he has a history of grand mal seizures and he’s stopped taking his medicine. Why is he here? Well, because he had a stroke. And for the next ten days, I could not convince anyone to either look at him and see that he hadn’t had a stroke or kind of put together the x rays they’d done, the CT scans, his whole story. So he continued to be treated as if he’d had a stroke, which was a big deal because they wouldn’t let him eat. They wanted to put a tube down him and because my father was agitated, because they had IV’s in him and wouldn’t let him eat, kept trying to pull out the IV’s. They tied him down in four point restraints because he was even more agitated once he was tied down in four point restraints. They drugged him. So now he was an old man with a stroke who was tied down and drugged and they were about to send him to a nursing home. He was perfectly fine, he was, nothing had happened to him and I couldn’t get anybody, no doctor, no nurse, to go in the room with me and look at him and actually physically examine him.

K.B.:                         So how did you finally break your dad out of this hospital hell?

V.S.:                        Because I know how the system works. After he was there for about a week, I went to the physician and he knew me by that time, and said, you know, we’ve had a family meeting and we’ve decided that my, you know, old father, would be better to do hospice and we want him discharged. So that’s how I actually got him home, untied him, took him off his meds, put him back on his, you know, went back to his regular business. And he lived for another three years at home, refused to ever go back to that hospital. And I think it is the most demoralizing thing that ever had happened to him.

K.B.:                     Yes.

V.S.:                      Everytime he’d see me, he’d shake his head, and he’d go like, I can’t believe they did that to me.

K.B.:                       Yeah.

V.S.:                      Turned out that the doctors in this particular hospital, as well as the nurses, had been doing a book club where they’d been reading it, liking Slow Medicine, liking God’s Hotel. What happened to my father, given that context, was even more surprising. Even being a physician, being a physician with apparent clout. I could not get anyone to look at my father to go in and touch him and see that he hadn’t had a stroke.

K.B.:                         Protocol on protocol, on protocol just creates like a web of dehumanization. It’s such a, it’s such a shocking and completely believable story to me because I’ve seen how rules beget rules, beget rules, and then it becomes harder and harder for doctors to act like people who deal with real bodies.

V.S.:                         Well, what do I think is good medicine and how did it happen? How did I come to the conclusions I’ve come to? So I use slow medicine to sort of go back in my past and present the patients that it kind of brought me to the conclusions of Slow Medicine and God’s Hotel at the end of what it is that patients need from doctors, which is, above all, a personal relationship.

K.B.:                     You champion a method called slow medicine. What is it?

V.S.:                     I came up with this idea of slow medicine. Really, it’s the opposite of fast medicine. I think of the slow medicine approach and the fast medicine approach as sort of two different tools in my black bag where fast medicine is body as machine. If you know you’re in an accident, you’ve got a broken leg and we assess you, and I pull out my fast medicine. What’s wrong? How can I fix it? Right? Boom. But before you were injured and after you were injured, this fast medicine approach isn’t useful. You’ll get out of hospital with your broken leg and you you had the pins and you got the stuff and they give you probably ten packets of medications and tell you to show up in two months. Right. Whatever. This is actually when you need to slow, slow model, which is doing things like taking away medications rather than giving them or kind of putting the patient into the context and asking oneself this this broken leg is going to get better. OK, naturally. But what’s in the way of it getting better in the best possible way? So it’s also dealing with the patient in the context of the environment, in asking ourselves what can we do to optimize this patient? What can we do to make it the easiest flowing kind of situation for them to get better? So with cancer, for instance, I think that the fast medicine approach in terms of slash, burn, and poison. So that model, I think, you know, look, compared to when I was a medical student, the the the treatment of cancer is way better. It just is. But where the the falling down part is before when you first go, you’re freaked out and somebody needs to really examine you, physically examine you. And afterwards, you know, after the slash, burn, you know. When it goes on for long, that both of those ways of looking at the patient as patient as a body, as a plant and a body as machine, they need to be put together and used as two different ways of looking at at the person.

K.B.:                              Yes, I like that. I like the organic imagery and the idea that, like, there’s some things we can fix if the word fix is the right one. We set a bone in a cast. Thank God for oxy.

V.S.:                            Yes, absolutely.

K.B.:                            So you think the people who practice medicine have to be like mechanics and gardeners? What do you mean by that?

V.S.:                         The body wants to heal. I was thinking about this the other day, I was thinking about the difference between a body as a machine and the body as a plant. These models. What’s the difference between a machine and a plant? And I think one of the things that’s striking to me is. When you think of the body as a machine, a breakdown is natural in a way. Machines break down. We expect them to break down. They don’t fix themselves. Right? You need somebody else to fix them. But there’s an implicit expectation of breakdown.

K.B.:                      Yes.

V.S.:                        But the body as plant model, we don’t expect our plants to get sick. We actually expect them to stay healthy. And so there’s an expectation of wholeness and health in the model of the body as a plant, that the body’s been wanting to be healthy. So sort of for cancer, chemotherapy, cancer therapy, you know, you kind of remove what’s in the way of your body healing. So a lot of the cancer cells, let’s get rid of them because they’re in the way, man. But once you’ve gotten rid of them, then you want to optimize the body’s urge to get better. It wants to fix itself. It wants to heal.

K.B.:                     That’s beautiful.

K.B.:                     You name a really powerful distinction between healthcare and medicine that I thought was really helpful. Can you can you help me parse out what the difference is?

V.S.:                      You know, I went to medical school and I became a physician. And people I knew were nurses and social workers and like that. And then one day, quite a few years ago, I was running a medical clinic and I was at this meeting and the budget guy walks out and he turns to me and says, well, you health care providers are just going to have to learn how to manage your your health care budget. And I had never heard the word healthcare before in my life. I said, healthcare provider? What are you talking about? We both stopped in our tracks. And I looked at him and he looked at me and he goes. Healthcare consumers, health care providers, you know, health care consumers. As if healthcare is in a box, on a shelf, in a retail store. And I’m standing at the counter and you’re in front of me. And I’m going, oh, would you like this box of health care or that box of health care? It’s incredibly dangerous and it’s totally wrong for what really goes on, which is not that at all. Health care is it’s not a thing. It’s not in a box. And I don’t take the box out and sell it to you. It’s it’s a personal relationship.

K.B.:                      Yeah.

V.S.:                       I started to look at where did this happen? When did this happen? Because it happened at a specific moment. It was not general, like a societal move. So I tracked down a man called Kenneth Arrow, who, as it turned out, was a Nobel Prize winning economist in health care. And he had written this famous 1963 article about why medicine could never be commodified. Actually, really interesting. Right?

K.B.:                     Huh.

V.S.:                     Because it wasn’t something that you could put in a box. You were totally dependent on this professional, this expert who was a physician. And then I saw that he’d signed a petition, thirty years later in favor of Obamacare, which I read all of Obamacare, all nine hundred and twenty two single spaced pages of it. And I can tell you that it’s not this, you know, hands on delightful document. It was written by all the health care industry people. And he’d signed a petition in favor of it. So I was like, I wonder what changed his mind? Turned out he was a professor at Stanford, right down the block. So I wrote him or emailed him and said, Dr. Arrow, I’d like to come over and have you explain to me why in 1963 you said it couldn’t be commodified and now it can. So he said, come on over. So we had a long discussion, we talked for about two hours. And he talked about health care providers and healthcare consumers and like that. And then it got real quiet towards the end, and suddenly he turned to me and he said, I have a question. He was from Lithuania, so he had a little bit of an accent. He said I have a question for you. He says, my wife was in the hospital a few months ago and I didn’t understand when her doctors, and he proceeded to be talking about patients and doctors and hospitals. All of a sudden, as soon as he was talking about his wife, he never connected up the care he got in the hospital with doctors to the health care providers that he was doing in his graphs. It was so telling to me, because when you get sick, everything changes.

K.B.:                    Yes, that’s right.

V.S.:                     And then you understand what we’re talking about.

K.B.:                      Yes. There’s no healthcare in general. There’s no pain in general. There’s just bodies. And the weird, beautiful organic messes and wonders that they contain.

V.S.:                      And individual.

K.B.:                      Yeah. And part of the deep confusion when we add economic language to the care of patients is, is the idea that if we’re consumers we’re somehow, if a patient is a consumer, that I’m picking this somehow?

V.S.:                     Right.

K.B.:                    You’re so careful about saying like like this is not a system in which patients opt in to strokes and cancer and heart attacks. And then you say, you know, this this ends up being medicine without a soul.

V.S.:                      Yeah.

K.B.:                     That sounded right to me. Words are so important. And I loved it when I had a friend over, and he’s an ethicist and I was describing a cancer experience I’d had in which I had gone to an oncologist expecting that I was going to get particular attention for my specific cancer and that, and it turns out like he was he was much more interested in like, what his colleagues thought, what a study might say. Not a lot of listening to what the story of my body was telling. And so I realized I was like part of a much bigger system with like friends and colleagues and incentives that I didn’t totally understand. And I was like, I don’t know, this is my friend Luke, I was like, I don’t know Luke, I just I felt a sense of nothingness that’s been hard for me to put my finger on. And he was like, oh friend, it’s biocapitalism. You’re part of a big, big machine.

V.S.:                    Wow, I love it, biocapitalism, I’m taking that.

K.B.:                     That word did it. I was like, oh, that’s that was the feeling of being commodified. And that created a very intense worthlessness in me that was, it just really helped when I had better language for it.

V.S.:                    That’s terrible.

K.B.:                    It really was.

K.B.:                    I have thought, I honestly have spent a ridiculous amount of time trying to figure out how people keep caring inside professions that are emotionally painful. And, you know, doctors and nurses and blood workers and all of them, like they the amount of pain they see is is so intense. And I imagine there’s a real temptation to just turn the volume down. But I always knew the difference between the people who saw me and the people who saw my chart. And I love that you write about that so beautifully because, you know, as someone who is bounced around between a million doctors for months before, I just refused to leave a room, so they had to give me a diagnosis. My chart was never going to give them the answer. But like, you’re very good at seeing the personal story behind the chart. And I just find that very really emotionally, like, really, really moving.

V.S.:                        It’s sort of shocking to me when I don’t see that to be honest, it’s like it’s kind of like watching somebody eat the box of the ice cream instead of the ice cream. Why? I don’t get it, you know?

K.B.:                       Totally. But I do think sometimes I mean, you write about the idea that, like when we use the metaphor of bodies as machines, so like the brain is the computer and the heart is the pump. I have been in, you know, so many medical care situations where it was much easier to see me as a series of parts because otherwise you’d get the whole the whole garbage thing, which is that I was a young mom who was trying not to die. You know, better for them to see the parts I think if they had to see 200 of me a day. There is a weird incuriousness of some people.

V.S.:                      Incuriousness, beautiful. I like that, biocapitalism and incuriousness.

K.B.:                      Because I’m sitting there and I’m, I’m auditioning hard for care. I want them to feel like we, they know me and the absurdity of my story so that just maybe caring about me is going to help them think more creatively about drug choices. And like, whether chemo has burned up my feet and my the tips of my ears, like, help me tell you the story of me so that we can figure out if I can live.

V.S.:                     Oh, wow.

K.B.:                     The blankness of some people has been really, it’s been hard to be close to, because I meet all these doctors and all these, you know, healthcare workers, and I just imagine that they are going into these professions with really a deep desire for meaning. And then so often I meet people on the other end that are just like, if you hand me a meaning right now, I will, I just, it’s impermeable, you know?

V.S.:                     Boy. When I was in medical school, you would be ashamed to miss something. What I’m getting at here, is so there’s the meaning piece, there’s the personal piece, there’s the relationship piece. But for me, there’s the craft piece. I think almost more than anything, as I got older and better as a doc, what really got good is my craftsmanship and the docs I most respected were those guys, they’d come in and they’d sort of rub their hands and you could feel their fingertips waking up and the way they would lift up a hand, shake a hand, or touch somebody, you could tell how much information they were getting and how much, that they were proud of themselves. They took pride. And where’s the pride?

K.B.:                    Yeah, that’s a practiced kind of vocation. And I think too, so much of what you’re calling people to is, in a call to craft is like, gosh, like, shouldn’t we want to be changed as we learn? And part of that means that, yeah, we make mistakes. And a patient maybe tells us that it was the way we told them that information was too confusing or too painful or. But the desire to learn and to be changed.

V.S.:                     And to be better. To get better at what you do.

K.B.:                    Yeah. The people that I met along the way that have been the most that have changed my experience of cancer the most, and actually just took better care of me, were the people who seemed to be really careful about their learning.

V.S.:                      So interesting. I did a whole thing for myself a few weeks ago, and I suddenly got hit by, you know, the whole marketing thing. We care for you. Care is our middle name. You know, healthcare. And I thought care, you can’t have care without carefulness. And if you don’t have carefulness, you don’t have care.

K.B.:                     I like it when people can make almost like um, like in theological terms, right, we talk like a liturgy of things like, that’s the nice thing about talking about God is like you kind of, you find a way to get into it. They’re like, welcome to this space. You know, you’re like you you step into the embodiment of it and then they lead you through something, and then they and then, you know, they give you the benediction. They like bless the crap out of you on the way out.

V.S.:                    Whoa, whoa, you need to explain this better to me.

K.B.:                   When people want to invite you into the, like, the hardest stuff of life like, like the primordial stuff of the universe, which is people’s pain, people’s meaning, people’s joy. And I always think of like doctors and pastors and social workers like people who are down in the muck of the stuff that makes or breaks people’s lives. One of the things I notice across professions is like a sense that they invite you into the space, there’s a frame around the work they’re doing. They usher you in and they usher you out. So like, they know what they’re gonna say to you when you walk in the door. They lead you through it and then they know what they’re gonna say to you to transition you out. And I, I see that with like chaplains who pray for people in horrible situations. I see that with, like, man I’m thinking now of like the best anesthesiologist I ever had. He was ancient of days, came in, I was like half foggy. He leans over. He has my hand fully in his hands, his warm hands and says, I’m Dr. Moon. I’m here to, explains the entire thing. He walks in. He leads me through. He leads me out.

V.S.:                          Wow.

K.B.:                          That, I was like, that is craft. The details is what made me feel loved and cared for. It really did. I think what’s so refreshing about talking to you is that I find sometimes with healthcare that there’s, it’s sort of like talking to veterans, like there’s people who’ve been in it, and then people who don’t understand and that sometimes being if you’re a you know, you’re on the patient side, there’s the assumption that, like, they’re on a team and you are not you just can’t be on that team, as much as you want to understand.

V.S.:                      Absolutely.

K.B.:                      And I just really appreciate the fact that your team is, your team is the patient.

V.S.:                    Well, the thing that’s ironic is I think for me, probably the thing that’s most struck me over the years with other docs is, I always identify with the patient because I’m gonna be a patient. I could manage all the crap going on as a doctor, but I can’t manage it as a patient, so I identify with you.

K.B.:                   That’s so nice. I have a friend at Duke and he has this really beautiful course where he trains doctors by having them draw bodies. And he explains to me that, like medical students begin their training by cutting into bodies and learning to separate themselves from cadavers and that for them to really learn the art of medicine that they have to learn to reengage with, like the beauty and the particularity of people’s bodies. So they just like, so they do an art class and they sit there and the shape of their nose and the texture of their hair. And I thought you would love that. You’re just, you’re a big fan of, like medicine, not just as science, but as art.

V.S.:                      Oh, I love that idea. That’s never occurred to me.

K.B.:                     It’s a funny thing to, like, reengage with the specificity of people. And that’s like I, hear you calling us to that. That like a return to the individual.

V.S.:                      I really liked what you were talking about awhile ago when you said, right before we were talking about liturgy, but you said they invite you into the space, they invite you into this, you didn’t use the word juice, but it’s sort of like, this is the essence, what you and I are doing now. This is, this makes me happy.

K.B.:                    Yeah, this is the stuff of life.

V.S.:                     Right? This is it right here right now.

K.B.:                      Yes, it is. It is magic and because people’s fundamental humanity is magic. And when you get to see it, like when you see the like, right now I’m just picturing my my port nurse. The way she, the way she looks at me like she loves me, even though we just met and she knows I’m scared about scans. Like when we see each other, it really is the stuff of life. And like you can’t help but want to participate in the thing that makes us more human again.

V.S.:                       I’m still there, I’m just I’m just kind of juicing that thing.

K.B.:                       It’s OK. I’m getting lightly teary all the time talking to you so.

V.S.:                        Fantastic. What a pleasure, Kate.

K.B.:                          You are a prophet of wholeness. In my opinion, you’re just you’re asking us to be more fully human in the middle of an industry that sometimes wants us to be parts. And honestly, thank you so much for that work.

V.S.:                           Thank you for having me. And thank you for letting me participate in this last hour, which is really very vivifying.

K.B.:                         Mechanics and gardeners. That’s what Victoria Sweet called people who practice medicine. Because both are good and necessary, thank God for all you who do the specifics of your job, who know the rules, get things done, who fix problems and know how to make things run. It takes a long time to learn that hard work. And you do it. You get to the point. You see the issue quickly and methodically. Thank you for being a mechanic. And God bless the gardeners who believe that we can grow into something more. But it might take a little time. You wonder what might be possible. You look at the hole and look up to see whether it will rain or shine. You don’t only see the problem, you keep watch to water and wonder longer than someone else might. And God bless you, who can do both. Who can be a mechanic and a gardener. You see solutions and processes. Quick fixes and long ones. You see systems and you notice the person in front of you looking into your eyes, grateful that you chose to apply your mighty gifts to their care. We all feel small in the face of great and terrible problems. So when you pause for us, thanks. It’s a miracle.

K.B.:                         This podcast wouldn’t be possible without the generosity of the Lilly Endowment. Huge thank you to my team. Jessica Richie, Keith Weston, Harriet Putman and J.J. Dickinson. So fun fact about the podcast world, your reviews matter. Would you mind taking a minute to write a review on Apple Podcast? It would mean so much.  This is Everything Happens with me, Kate Bowler.