EP. 75: WHEN A CANCER NURSE BECOMES A CANCER PATIENT

WITH THERESA BROWN

Aug 15

WITH THERESA BROWN, PHD, BSN, RN

An English professor-turned oncology nurse shares her experiences at the bedside of some of the sickest patients in the hospital — and her reflections when she ends up on the receiving end of health care as a cancer patient.

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Episode Summary

When professor of English literature Theresa Brown, PhD, BSN, RN decided to become an oncology nurse, she suddenly found herself juggling seemingly-impossible patient expectations. And when she later was diagnosed with breast cancer herself, she was forced to confront the paradoxes of a healthcare system that demands so much of its practitioners yet provides insufficient support for them. She recounts these revelations in her recent book, Healing: When a Nurse Becomes a Patient. A frequent contributor to the New York Times, Theresa is also the author of several bestselling books detailing her experiences helping patients through some of the most devastating moments in their lives. Over the course of our conversation, Theresa shares her unusual journey to nursing, the daily struggles she encounters caring for the sickest patients in the hospital, and what her experiences as a cancer patient have taught her about finding solace in the midst of our imperfect healthcare system.

Theresa Brown, PhD, BSN, RN, is a nurse and writer who lives in Pittsburgh. Her recent book Healing: When a Nurse Becomes a Patient explores her diagnosis of and treatment for breast cancer in the context of her own nursing work. Her book, The Shift: One Nurse, Twelve Hours, Four Patients' Lives, was a New York Times bestseller.
Theresa has been a frequent contributor to the New York Times and her writing has appeared on CNN.com, and in the American Journal of Nursing, the Journal of the American Medical Association, and the Pittsburgh Post-Gazette. Theresa has been a guest on MSNBC Live and NPR’s Fresh Air. Critical Care: A New Nurse Faces Death, Life, and Everything in Between is her first book. It chronicles her initial year of nursing and has been adopted as a textbook in Schools of Nursing across the country.
Theresa's BSN is from the University of Pittsburgh, and during what she calls her past life she received a PhD in English from the University of Chicago. She lectures nationally and internationally on issues related to nursing, health care, and end of life. Becoming a mom led Theresa to leave academia and pursue nursing. It is a career change she has never regretted.
In this episode, you will hear about:
• Theresa’s path from English professor to oncology nurse - 2:07
• What “whole person care” means to Theresa - 5:54
• A day in the life of an oncology nurse - 11:26
• How Theresa managed the emotional stress of working with seriously ill patients in such a prolonged and often intimate way - 18:47
• The high risk of moral injury in the nursing profession - 34:34
• Theresa’s experiences when the tables were turned and she became a cancer patient herself - 38:53
• Theresa’s practical advice for leading with kindness with patients - 44:43
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: [00:01:02] When professor of English literature Theresa Brown decided to become an oncology nurse, she suddenly found herself juggling seemingly-impossible patient expectations. And when she later was diagnosed with breast cancer herself, she was forced to confront the paradoxes of a system that demands so much of its health care practitioners, yet provides insufficient support for them. She recounts these revelations in her recent book, Healing: When a Nurse Becomes a Patient. A frequent contributor to The New York Times, Teresa is also the author of several bestselling books detailing her experiences helping patients through some of the most devastating moments in their lives. Over the course of our conversation, Teresa shares her unusual journey to nursing, the daily struggles she encounters caring for the sickest patients in the hospital, and what her experiences as a cancer patient has taught her about finding solace in the midst of our imperfect health care system. Theresa, thank you so much for taking the time to join us and welcome to the show.
Theresa Brown: [00:02:04] Thank you for having me. It's a pleasure.
Henry Bair: [00:02:07] So right off the bat, I have to remark on how interesting it is that you spent the first half of your career training to become a professor in English literature before training to become a nurse. That dual interest in the arts and medicine isn't so unusual given the type of people we have on the show. In fact, both Tyler and I have spent time in college on non biomedical subjects with me having majored in medieval history and Tyler having minored in American studies. And so we have true appreciation for the humanities. But you actually went out and got a PhD in English, so we'd love to know more about that. What drew you first to English and then to nursing?
Theresa Brown: [00:02:48] Yeah, well, first of all, it's always great to meet kindred spirits, humanities people who then went into health care. I do think we bring a valuable perspective. My story is my dad's retired now, but he was a philosophy professor and as a kid and growing up, I thought he just had the coolest job in the world. You know that you get to go to this building with big columns in front, and then you talk to interested young people who just want to learn about things. And it seemed amazing to me and I never lost that feeling all through college. So then I went to grad school, got a PhD, was teaching at Tufts University in their writing program, and what had looked like the dream job to child Theresa and even adult Theresa in reality was not my dream job. It was fine. There were things I liked about it. I think I was a reasonably good teacher, but I didn't feel passionately about it. And then along with that, I became a mom for the first time and we moved to New Jersey for my husband's job. And then I got pregnant with twins. The pregnancy was planned, but not the twin part. It was really the biggest shock of my life, but it was really that pregnancy. I got immersed in the world of health care, but around a very positive thing. Right then had the girls, my twin daughters, and suddenly had three kids under three, and there was a lot of exhaustion and diapers and laundry, but also love and caretaking and joy.
Theresa Brown: [00:04:29] And I felt like I really fell in love with the mess of life. And then a friend who's a nurse visited when the the girls were about 18 months old, and they're 24 now. So that tells you how much time has passed. But I told my friend I had midwives for the pregnancy and I thought looking on again that they had the coolest job in the world. And she looked at me and she said, Theresa, you could do that job. And I thought, really, it had never occurred to me to do anything in health care to become a nurse. But I looked into it and found out, Oh wow, I could become a nurse. And for people listening, there are now a lot of places with what are called second degree programs. So if you already have a college degree or a PhD, you can get your science prerequisites and then do one of these programs where you get your bachelors in nursing and usually a year and a half can be a year. And I was hooked literally within a month. I was taking general chemistry at Rutgers University, where my husband was teaching, and I never looked back. So it was that immersion in health care. And for something so positive, learning so much about the body. But this combination of caretaking and also science, that was what I really fell in love with.
Tyler Johnson: [00:05:54] You know, I was reflecting while you were talking earlier that I keep waiting to meet. I'm sure you have known many in the hospital that there are some doctors, most doctors write their name tag, says whatever, whatever. Md But then there are a few of them that it says MD, PhD, and I'm still waiting to meet the first one whose PhD is in English literature. Like I've I've met a couple of like anthropology or like there are a few or economics occasionally, like there are a few sort of, you know, borderline liberal arts degrees thrown in there. But I have never yet met one who has a PhD in English literature, so we'll count you as the closest that I've ever come. But I'm just curious. So you make this switch. And then what did your nursing path look like? Like, did you go into labor and delivery or something sort of close to midwifery or like, where did your path take you after once you had a degree? Another degree? Yeah.
Theresa Brown: [00:06:48] Well, it took me four years, I think, to do the science prerequisites because I didn't want to start in school full time till the girls were in kindergarten. And the truth is, I loved it after having been in grad school for English at the time when everybody was very into abstruse literary theory, which maybe they still are. I don't keep up, but to take a class where it was just like, This is the liver and this is what the liver does, you know.
Tyler Johnson: [00:07:18] Here are seven theories on the liver and why all of them might or might not be true. Just kidding.
Theresa Brown: [00:07:24] Yes. Or in chemistry, you know, this is how you do a redox reaction. And there's really just one answer here and we're not going to talk about it.
Henry Bair: [00:07:35] Here's a postmodern reading of aldol condensation.
Theresa Brown: [00:07:38] Exactly. Yeah. So I just I loved how concrete everything was. It was great. And even had a cadaver lab for anatomy. That's about as concrete. As it gets. But yes, I did my prereqs got my degree. We ended up moving to Pittsburgh, so I did Pitt's crazy one year program and then actually went into oncology. And a friend of mine said, What happened to you? You went from birth to death. And it's like, Well, first of all, that's not what oncology is. It's but the truth is, I looked into midwifery and talked to a number of midwives and found out that it can be a really hard lifestyle, that you're on call a lot. And just for me personally with my kids, I didn't want to have to always be saying to them, Well, I may be there or may be at a delivery. And also once I got into nursing school, I really fell in love with bedside nursing. And to be honest, I did not know that much about bedside nursing. Even once I got into nursing school, I really found out doing clinicals what an important job it is and I think the country and the world got a much better sense of that during the pandemic.
Theresa Brown: [00:08:54] But I think a lot of people don't really understand what do nurses do? Why are they so important? So I pulled back from this idea of I must get a master's right away and then got exposed to all different fields in nursing school. And I just found oncology really, really interesting. And there's also a lot of cancer in my family and my mother's side, so it felt like an opportunity to give back. But the truth is, from the nursing point of view, it's very science based and very intellectual and there's always new stuff coming down the pike and the care is very systemically oriented because I was taking care of patients with liquid tumors. And so I really liked all of that. And, you know, I did not really go from birth to death, but from labor and delivery to really trying to save people's lives. Complex care involved with that. So I did bone marrow transplant for five years, then I worked outpatient bone marrow transplant, other kinds of infusions. And then I actually went into home hospice. And that was because I had seen a number of bad deaths in oncology, which is a whole nother topic.
Theresa Brown: [00:10:13] But also I felt like in the hospital I was losing my ability to see patients as whole people, even an outpatient care, you know, they come in, it's like sit in this bed, put on this gown, do this, do that, go here, go there. And I wanted to get a sense back of patients as full human beings that have lives and families and human context. And so that's why I decided to go into home care. And it's so interesting because in nursing school, what you hear, you sort of absorb is this idea that people are going to home care because they can't cut it in the hospital. And that is so not true because when you're in people's homes, you're on your own. And that is what struck me right away. Like, I can't go out in the hallway and say, Hey, can I run this by you? And just whatever comes up, you have to deal with it, which can be challenging. But I did get that sense back of, Oh, these are people, they have lives. You know, they don't just live in this room wearing this horrible, ugly gown that doesn't close in the back, you know what I mean?
Tyler Johnson: [00:11:26] Sort of to that point, maybe a little bit. And you mentioned this briefly a moment ago, one thing that really still sticks in my craw, frankly. So Stanford built this gorgeous new hospital about three years ago. It opened just before the pandemic. So we still have the old hospital and now we have the new hospital. Right. And the new hospital is one of the tallest buildings in Palo Alto. And it's engineered in such a way that every patient room is on the outside wall. So every patient room has like floor to ceiling windows. And it's spectacular. I mean, the views from some of the like seventh or eighth or whatever it is, floor rooms are just I mean, are truly stunning. But there was this big discussion when the hospital opened about which departments are going to get to have their patients in the new hospital versus which are going to stay in the old hospital. Right. To this day, it drives me bananas that one of the departments that gets all of their patients in the new hospital is the orthopedic surgery department, which of course, no offense to orthopedic surgeons, but most of the patients that they take care of are coming in, or let's say many are coming in for elective procedures. They're there for a day or two. They have a very expected course. Then they get better and then they go to a rehab center or go home or whatever. Right. The reason that that bothers me so much is not because they shouldn't have nice rooms, right? Ideally, everybody would have a nice room. But if you're choosing the people who have. Have to have the nice rooms. What drives me crazy is that the people who are not in that new building are the people that you were taking care of.
Tyler Johnson: [00:12:56] Right. And I mean, not obviously your actual patients, but I'm saying that one thing that I think people who have not worked in the hematologic oncology or the BMT division of a hospital, one thing that's hard to understand, unless you've had a family member, heaven forbid, go through it, is that these patients, the ones who are either undergoing what's called induction chemotherapy for acute leukemia or who are getting a bone marrow transplant, they come into the hospital knowing that if they come in on, let's say, the 1st of April, the plan, not a terrible complication coming out of the blue, but the plan is that they will be in the hospital from the 1st of April until sometime at the beginning or middle of May. Right. So like 20, 30, 40 days. And then if there are complications, it's not at all unusual to have someone who is there for 50 or 60 or 70 days never leaving the hospital. Right. Can you walk us through So you're on a bone marrow transplant unit when you're taking care, especially of those patients who are there for such a long time. What was your daily work like? What were you doing as a nurse? Because I think that whole world taking care, especially of patients who are there for so long, is totally invisible to 99% of the population. Right. Because people don't even have an idea that that's going on, let alone what a nurse actually does. So can you fill in a little bit of color there as to what your job was?
Theresa Brown: [00:14:25] Yeah. And my publisher would think I was remiss not to mention that my second book, which is called The Shift, is based on one real day me working as a nurse and bone marrow transplant. So if people want to really get a full, deep sense of it, they can find the book. It's The Shift: One Nurse, Twelve Hours, Four Patients Lives. Disturbingly, one of the comments I got from several nurses after the book came out was "Four patients? Oh my God. I'd be lucky to ever have four patients." So an aside about that. But yeah, what a great question because I think people don't understand that when you get a diagnosis of acute leukemia, it is usually tends to be like a 60 day stay right away. So a patient comes in, gets this round of very intense chemotherapy and then we've basically destroyed their immune system and we have to wait for their immune system to recover because it's not safe for them to not be in the hospital in that situation. And I guess there are debates about that in places that are becoming less conservative about that than they used to be even when I was at work. But so a day could be so many different things. It could be giving someone chemotherapy, it could be actually doing a bone marrow transplant, which is actually giving someone an injection of stem cells.
Theresa Brown: [00:15:50] That was always a good day when it was a transplant day and you got to do a transplant. It could be giving not a leukemia patient, but a lymphoma patient, a different kind of drug that modulates the immune system like Rituxan, that doesn't have long term side effects like chemotherapy, but can be very dangerous at the time people are getting it. So monitoring all those different responses and then basically everyone on that floor pretty much was very fragile. And being a nurse there was having a constant awareness of that fragility and having to be very careful about, okay, is this someone who's suddenly getting a lot worse? And then what are we going to do about that? And that was sort of a feud between us and one of the ICUs, because they felt like, you give us one of your patients and they're already half dead, like their heart rate is 120. Their platelets are fine of. So what are we supposed to do for these people? And so we did some education with trying to help them understand us better, trying to help us understand them better. But I think it's hard for people to grasp that level of fragility that when someone really has no immune system, you know, a fever is not just a fever. A fever can be a dangerous sign of a serious infection that's been brewing.
Theresa Brown: [00:17:22] All kinds of very important bodily mechanisms can go the wrong way very quickly. And so it's having to be on top of all that, which is very. Stressful, but also very rewarding. One of the best stories about this because it ended up reversing but went into a room to give a patient his medications and instead of putting them in his mouth, they were in a little cup. He tried to put them in his ear. You know, this is not normal. He had a fungal infection and we ended up being able to take care of it. But so it's having a recognition that something and someone else, you might just say that's unusual. It's probably a sign of something that is really not good and has to be taken seriously. So I like that challenge. But you had to always be on your toes. The upside in a way, was that people stayed for so long, we really got to know them. We got to know them. We got to know their families, their kids. We got to really get a sense of who they were and be there for them and what are their hopes and their fears. And that was lovely to be such a part of people's lives at this very, very hard time. So very challenging, but very rich work.
Henry Bair: [00:18:47] So currently I'm an intern on the solid oncology service at my hospital. It's a little different from liquid oncology because the way my hospital is set up, these patients with cancers of solid organs like the brain, the lung or the liver aren't hospitalized on my service for treatment of their cancer. They aren't here for radiation oncology or immunotherapy or chemotherapy. Rather, they are here for a complication of the cancer or of whatever treatment they are receiving. But nonetheless, they are all very sick. Not unlike, I imagine, the patients you took care of. But to your point, I want to highlight that as a solo intern on the service, I am responsible for give or take ten patients on most days, sometimes 12. And it is physically impossible for me to keep track of how each patient is doing on a minute to minute or even hour to hour basis. So I truly rely on this situational awareness of nurses to let me know if there's ever anything I need to pay attention to. I rely on the nurses to tell me if there's something not normal about their patient, and normal looks different from patient to patient. So I get messages all the time from nurses that the patient looks sleepier than normal or has a faster heart rate than her baseline or has more pain than usual or is feeling more depressed than before.
Henry Bair: [00:20:12] All of which is to say, absolutely owe it to the nurses to inform me if anything seems wrong. And then I go see the patient. But speaking of the amount of time you spend with patients, I have a question about that. When things are going well, when the patient is happy and grateful and they are improving or are about to be discharged, it's wonderful to spend time with them. But when things are going poorly, their illness is not responding to our treatments or the patient is upset, it can be challenging to be with patients. And as much as I might want to do so, it is simply impossible for me to be there when I have ten other people to attend to. But nurses, you have to be there. You're the first ones the patients call for when they need help and whether or not you are prepared to or ready to or want to. You have to be there to address whatever distress they have, be it physically or emotionally. What is that like?
Theresa Brown: [00:21:12] Yeah, I think the situations were easier for me than maybe, say, a brand new nurse who's 22. I was older. I did have life experience. I had children. So that at least gave me a, you know, a sense of the potential for things to go really wrong. Not that anything went wrong with my children. It didn't. But I think it's just sort of a life passage that you're just putting sort of a different awareness bracket, same as if you lost a parent as a child or, you know, you know, there are all kinds of personal bridges that we all cross that give us sadness, but also wisdom. I found it in some sense easy to be there for people I like. Listening doesn't come that hard to me. But then it was afterwards, right? Like during a shift, I would be in that mode. I've got my A-game, you know, my game face on whatever sports metaphor you want to bring in, I'm ready to rumble. But it's after the shift that things could be hard and sad. Also, sometimes I would go and talk to a coworker or coworker would come and talk to me if there was something that we had found really hard. But again, I found going home to my children just this great antidote. And also I rode my bike to work. It's about three miles there, downhill, three miles home uphill. So I had to kind of crank it out. And the moving and sweating and working was really, really helpful for that initial processing of just the sort of feeling like there are all these emotions clinging to me and, and how do I get through them and get back to myself. And then my husband would make dinner and my family would always wait dinner for me.
Theresa Brown: [00:23:47] So that became a pattern of building in this healing into my day. That's what I think is so important. I very rarely felt overwhelmed at work from someone needing to talk to me or being really sad or having bad news. But I can imagine a cumulative effect toward burnout if I had not been able to put in place these ways to take care of myself. And that's such an overused phrase to pull me out of the world of the hospital, back into the world of home. And that just became very important to me to have something after work that was going to be positive, happy, you know, even if it's going home to the kids and they, Oh, I can't finish my homework, I can't find this in my backpack, whatever. It just it's like, oh, well, I can help you. You know, I just talked to someone who's dying. Like, I can help you look through your backpack, you know, like, sure, I can help you with your English homework. And that's so much easier than sitting while someone cries. It really helped. Give me perspective. Although we nurses would joke sometimes about, you know, you go somewhere and you're trying to buy something, I don't know. And somebody's giving you a hard time. And we just wanted to say, Look, I work in bone marrow transplant. Like, could you just make this work out, please? Because I'm dealing with really serious things all the time at my job, like way more serious than this. So it was almost like a mantle that we carried with us. But the danger is that you don't take that off when you leave the hospital.
Tyler Johnson: [00:25:31] I remember very specifically when I was an oncology fellow, a couple of friends, and my wife and I went to see the play The Curious Incident of the Dog in the Nighttime, which if you've read the book or seen the play, the point of the play is to immerse you in the world of a person who's sensation of the world is very different from what we consider to be neurotypical, right? So riding the subway, for instance, is this sort of assault on the senses. And in the play they try to convey that assault for people who we would consider to be neurotypical so that you understand like the brightness of the lights and the percussiveness of the sounds and all of those kinds of things. And the point is supposed to be that this protagonist perseveres through this very difficult subway ride and other things, because doing so is important to get to his loved one. And anyway, that's part of the story. So the point of this is just to say that I still remember when we got out of the play, the three other people I was there with got out and said, Oh, it was such a wonderful meditation On the difficulty of, you know, this and neurodivergence that. And anyway, all of that going into all of these things. And I was just like, No, no, I want like Looney Tunes. I do not need drama. I do not need gravitas. I do not need like anything to prove to me that the world is complicated and difficult because that.
Tyler Johnson: [00:26:53] This is my life. 80 hours a week right now. I just need something to be sort of a release. And actually, though, I think that that is true, except much more so for nurses. Like the thing that has impressed me so often with I'm talking about traditional bedside nurses. I mean, I have respect for all nurses, whatever they do, but specifically for bedside nurses, especially in the inpatient setting. The thing is that, like the most difficult and for lack of a better word, also the grossest parts of humanity. And I'm not talking gross like gross humanity. I'm talking. Gross Like, disgusting, like make you want to retch. Those are the things that the nurses can't turn away from, right? Like, as the medical team generally, we round on patients once a day. There are exceptions to that. Or if a patient gets sick, we might come back or whatever, right? But we might go into the room in the morning for someone who's undergoing a bone marrow transplant, for example, and let's say that they have a really disgusting festering wound depending on the day, we might unwrap the wound and look at it and be like, okay, there's the wound. Is it better, worse? Does it have signs of infection, whatever, whatever. And then we look at it for a minute or two and then we rewrap it and then go on with the day. But the nurse might need to dress the wound or do light debridement of the wound or check on the wounds multiple times a day, or figure out how do I sort of accommodate the wound when I'm changing the person's position in bed? By the same token, if there's a patient who is just really, really grumpy or just downright mean, like we might go in and take the abuse for a couple of minutes.
Tyler Johnson: [00:28:41] But the nurses are there all day long, over and over and over and over again. And however unpleasant a particular patient is being like we can kind of be like, Oh, the patient is unpleasant. This is really unfortunate. And then we go on to the next patient, right? But the nurses are there all day long, hopefully not being genuinely mistreated or abused, which is a separate thing. But but I'm just saying, even when it doesn't rise to that level, like just all of the complex stuff of humanity. Right. The same thing. If you have a patient who's having a sort of an understandable, appropriate existential crisis because they're dealing with their own mortality or they're a young mother with children who has cancer, like whatever the thing is, like all of that stuff is like, it's not theoretical or abstract, right? It's concrete. It's the person sitting in front of you whose eyeballs you are looking into while you change the dressing on their wound, on their arm or whatever. Right. And that is just a lot.
Theresa Brown: [00:29:35] Yeah, it is a lot. I really love the play analogy because I remember seeing a whole series of short Pinter one acts or one scene even and enjoying them and thinking. But you know, these are fun, right? But what do they have to do with real life? And not that that's a great critique of art or anything. It was just sort of more, wow, what where did this imagination come from? And then I would have moments in the hospital where I would think, Oh my God, this is just like a Pinter play, like something so absurd or strange or bizarre or surprising or just really unexpected. Like someone, you know, trying to take their medicine through their ear. That really, really struck me. There's just an intensity to it that we don't really find in real life, but it's not the kind of intensity of a superhero movie, right? Or a Mission impossible or it's the intensity of human vulnerability, physical, emotional and being with people in that space. And I had a nurse mentor who always said it's a privilege to be with people in these moments. And I did feel that way. I really felt that way about hospice. I mean, I felt so lucky to be doing that work. But at the same time, I always told people what's great about that job and what's hard about that job, or one hair's width apart and I miss it. I'm not working clinically now, but it's I mean, that stuff is so difficult. And then for me, what I found hard was the the bureaucracy, the problems that come with being understaffed, the problems of being nickel and dimed about all kinds of small things, you know, Or is the big picture version of it literally right, is who gets the beautiful hospital while the orthopedic patients instead of the oncology patients.
Theresa Brown: [00:31:42] But when your job is so emotionally demanding, like you say, first of all, you want art that entertains you. But second of all, you want to be working in an environment that supports you and supports the patients because they deserve that and you need that. Like I needed that. We all need that. Everyone doing healthcare work needs that because it is so challenging. And I'm really thinking about what you're saying about the nurse is the one who's there and there's a rhythm to it, but definitely. I mean, remember one day I came in, I had a patient on constant bladder irrigation, and then they gave me an admission. As a family we knew well, but where the wife was just incredibly demanding all the time about everything, which, you know, there was a whole long story. You know, I'm not trying to paint her as a villain. They'd had a lot of bad experiences and but just like, how am I supposed to accommodate this? Like, the wife is trying to look out for her husband and constantly wants me in the room. The other person. I have to be in the room a lot because they need continuous bladder irrigation. And then I had two other patients and in my book The Shift, I talk about wanting to be able to be two places at once and realizing I could not do that. And I read this comic book when I was a kid called Legion of Superheroes, and one of the superheroes was Duo Damsel, and she could concentrate and then just split into two versions of herself and I said.
Theresa Brown: [00:33:21] I've really tried. You know, I can't do it. But those moments are so hard. And I've taught nursing students a little bit and, you know, say, you know, you think a code is going to be the most exciting thing, dramatic, difficult, whatever. Right? And codes are all those things. But it's really those moments where you think, okay, this person was just told they have no more treatment options. This person is in pain. This person is vomiting profusely. Which room do I go in first? And those moments are really, really hard. And, you know, you could say first you treat the pain, then the I don't know. It really depends on the patient's, you know what I'm saying? You can have a set of triage criteria and you may follow those criteria, but it won't make it better when after half an hour you get into the room with the crying patient and they say, Where were you?
Theresa Brown: [00:34:22] Or they've descended so far into loneliness and fear that it's so much harder to bring them out. So those moments are tough. I mean, everyone knows if there's a code, there's going to be a mess and things aren't going to get done right. But it's those fine moments where you have to choose. I mean, remember. Once someone asks for pain medication and he wasn't that uncomfortable and sort of something came up and something else came up and something else came up and I got back in the room and and I think it was his father said, well, it's a good thing he wasn't really suffering. I'm just like, oh, my God, You know, really, I, I just don't need that. I mean.
Tyler Johnson: [00:35:08] Well, and and I think one thing that we've talked about a lot on the program that I think that highlights and, you know, we speak about it a lot in the doctor world. But I think it if anything, it feels actually even like a clearer and more present issue to me, or at least potential to be the issue in the nursing world is the risk of moral injury. Because, you know, I think that whether this is reasonable as an expectation or not, people think of nurses as the first source of relief, right? Like they are the person who has access to the pain medications they are even as simple as they are the person who can bring a cold cloth. If you have broken into a sweat, like whatever the thing is, right, which is wonderful. And I mean, you can make an argument that a nurse is sort of the ultimate example of having a job with this kind of inherent moral power. Right. Precisely because they bring this healing in such an immediate, visceral, concrete way. But the flip side of that is that if you have multiple patients, all of whom are expecting that same kind of healing presence at the same time, and yet even as a bone marrow transplant nurse, when you had a relatively not that it was as small as it needed to be or should have been, but still, relative to many other nurses, a relatively small number of patients, you can't be in four places at once, let alone if you're a nurse who's supposed to be taking care of 6 or 7 patients, You know, and of course, if you have patients who are doing fine, that's a different thing.
Tyler Johnson: [00:36:42] But if there are two or 3 or 4 people who really, really need your healing presence and you can only be in one place at a time, then you're left at the end of a shift in the paradoxical position of, on the one hand, having spent the last 12 hours doing nothing but bringing your healing presence to patients and yet still feeling like you're saddled with the sense that there were constantly 2 or 3 people that were wondering why your healing presence wasn't in the room with them.
Theresa Brown: [00:37:06] That's a really great way of putting it. And I, I like that observation that nurses are really so much at risk for moral injury. And listening to you is I can think of so many situations. I mean, one night I was I think I was doing a 3 to 11 and we had a bunch of pregnant nurses on the floor so they don't give chemo. So I was I think I was giving chemo to different patients for one nurse, or maybe the patient was getting two different drugs. I don't remember ended up getting into a room later than I wanted. The patient's daughter was just incredibly angry. Where have you been? I, I told you I couldn't leave till my mother was disconnected from her saline and. And, you know, I said first. That's not what you said. And I've never said anything like this before or since. But I said, I think you're angry about something else and you're taking it out on me. And the thing is, that probably could have really come back to hurt me. I don't think it was necessarily untrue, but it was not empathic. And you're right, I was not a healing presence. But she did calm down and seemed to suddenly be less angry at me.
Theresa Brown: [00:38:18] But it's really it's really hard because, yeah, people can have these expectations and they're all legitimate, right? Like, I'm not going to say they're their expectations are not legitimate, but they may also be impossible to meet. And so then. What happens? I remember another day when I had. A nurse had gotten sick the last minute, had to call off. And again, because there's there's no real float pool, there's no flexibility of staffing built in. So we everybody had to get another patient. I got the hospice patient who died fairly soon into the shift, which is Sad, And then also at another patient, new diagnosis. White count was through the roof needed phyresis to pull off a whole bunch of her white cells. And then the family of another patient, they would see me in the hallway running, running, running back and forth and say, My mother needs a bath. When are you going to give my mother a bath? And I'm like, look, someone died and someone else is going to die if I don't get this set up. And it's there's nothing wrong with wanting your mother to have a bath. It just in my list of priorities that was not even on the list.
Tyler Johnson: [00:39:35] As you're talking about you as the nurse trying to understand the strong feelings that your patients and their family members are having. One of the things then that you have written about is the strong feelings that you had once you suddenly found yourself on the other side of the encounter. Can you talk a little bit about the story that brought you up to there and then what it was like to suddenly be on the other side receiving the health care instead of offering it?
Theresa Brown: [00:40:03] Yeah. So coming up on six years now, I was diagnosed with stage one breast cancer, which came as a complete surprise as it does to everyone. But somehow the surprise aspect of it still hasn't worn off and became a patient in that moment, suddenly saw healthcare from the other side and right all the moments I was just describing, which I am probably describing to you differently than I would have before I had cancer. Because suddenly I'm saying I get where these people were coming from. It's not what they wanted was wrong. I just couldn't meet their need because I had so many moments where the health care system just wasn't there for me. And it started right at the beginning. I had a mammogram. I then a follow up. I almost always get called back, but this time I got called back and they said it looks like breast cancer, which, you know, if doctors and nurses are listening, you know, it's not a definitive diagnosis till you get the biopsy. But she was pretty sure and she said, you will not leave today without an appointment for a biopsy. And then they parked me in the hallway with all the other women getting their mammograms and I could not stop crying, which was horrible and had another mammogram. And then the radiologist showed me the screen and she was quite lovely. I went out to schedule the biopsy, sat down, and, you know, and I'm sure I was crumpled up, but my face was tear stained and no one came and no one came. And finally one of the admins came by and said, Oh, she leaves at three.
Theresa Brown: [00:41:46] You just missed her. And I really I wanted to hurt that person. Like I really wanted to hurt her. And that was the beginning of. Understanding that these small, to us as clinicians, these small moments. Right. How enormous they are to patients. I had stage one, very treatable breast cancer. Like I say, this should have been a slam dunk. You know, I was supposedly going to a cancer center, a women's cancer center, a women's hospital. This should be a well-oiled machine. And instead it felt like DIY for do it yourself cancer care. And so that's what my third book, Healing, is about. And in the book, I go back and forth from being a patient and going through my treatment and then looking back on moments as a nurse where suddenly these incidents or glitches that I felt like, okay, yeah, this is a problem, but you're going to get your chemo or whatever. It's going to work out. And understanding finally what it was like for that patient. Like to them, it's not a glitch. To them it's you said this was going to happen and now it's not happening. And so I don't trust you anymore because you lied to me. Because when you are worried that you're going to die, everything's a big deal. And even though I knew intellectually and the rational part of my mind this cancer was not going to kill me. Cancer is scary. It's very, very scary. And we could probably have a whole nother podcast. We could probably talk for a day, right about is there a way to make cancer less scary? You know, it's it's it's very scary in our culture.
Theresa Brown: [00:43:42] It's a big deal. You know, the big C, right. It's it's the only illness that has this kind of aura of malevolence that surrounds it. And no one who should have ever sat down with me and said. Here's what you have. Here's your prognosis. You know, in TV shows and movies, I love it where people get a cancer diagnosis. They go in, they sit in the office, and the doctor, depending on what the tone of the show is, either empathically talks with them or drones on and on. Well, they don't listen, which we know from research, right, Is what happens if people don't listen, whether the doctor is being empathic or not, just because when you're stressed, you don't listen very well. I didn't even get that over the phone like nothing. And it's I just thought, this is appalling. We think we're doing so great and we're treating people like this. And it was so hard because I know the nurses I worked with, we tried so hard. The doctors, everyone was trying so hard. And so I started to see it as system problems, which I had written about and thought before. But suddenly, with a very strong sense of conviction, that we've created this system where there's managers focusing on what they call throughput and heads and beds and not on people. And I would really, really like the focus to be on people. And it sounds like the two of you would also and I think a lot of. Nurses and doctors would really like that.
Henry Bair: [00:45:25] Yeah. Well, thanks for sharing and opening up about these very vulnerable moments. So one of the reasons that Tyler and I started this podcast is to explore these issues of moral injury and burnout. And it is so apparent to us that, yes, there are huge systemic issues, you know, many of which are unfortunately not within our our individual hands, essentially. At the same time, through these conversations, we've also gleaned moments that elucidate ways that we on the ground day to day can enable or facilitate a more robust focus on the humanism that you were talking about. So I'm wondering, what have your experiences taught you about how we can be better clinicians? Right. Right. We spent a lot of the first half of this conversation talking about those difficult moments with patients and how we are being met with impossible expectations. Sometimes, as you mentioned, there's nothing wrong with what the patient wants. It's just impossible for us to meet them. And yet we still feel terrible about it often. Right, Right. So what have your experiences taught you about how we can more productively approach those situations?
Theresa Brown: [00:46:42] Yeah, I think listening is key. I mean, when when patients ask me, what can we do to get the care we want, the first thing I say is always be polite because people are just much more likely to listen to you. Be clear. But also you can if you don't understand, say, I don't understand and keep saying that until you do understand. Like, don't be afraid to speak up, to ask questions, but also, you know, stay focused on what's really important. But I also I know how much pressure physicians are under to to get out of that room. Right. Like you probably want to stay longer as well. But you have 12 patients and you're going to have to put in orders when rounds end and you're busy as well. But listening is so important. And. Maybe if sometimes. If we could talk less and listen more. That might be helpful. I think also, if nurses and doctors can work together better, which I keep hearing positive reports from places about, that they're trying to find ways to integrate the groups. But I feel like. A lot of energy gets wasted with nurses and doctors not communicating well, sort of.
Theresa Brown: [00:48:08] You know, the doctor goes in and tells the patient one thing and then the patient calls the nurse in and says, He just told me this. What was that? And the nurse says, What do you what, what are you talking about? Or an order shows up and the nurse doesn't know what that is. And so that would really help. And it would keep patients from being confused about their care and what's going on with their care. So that's about consistency and communication and trying to meet people where they are. You know, some patients, they want to understand everything, right? And part of nurses, what we're trying to do is educate the patient so the doctor can say, hey, this patient has so many questions about bone marrow transplant. Can you spend some time today and talk with them? Of course, some people, they don't want to know that, Right? They just want to know what are you going to do? What's it going to do for me? And they don't want to hear anything else beyond that. So that can really help. But it's so much of it comes down to time. Do you have time?
Tyler Johnson: [00:49:12] Yeah. And I want to just highlight their attention that I hear. You know, it's so interesting. I'm not trying to make light of or instrumentalize the difficulty that you went through with your cancer diagnosis, but since you have been through it and have been open enough to write about it, I think that one of the things that's so striking about it is that here you are as a nurse who has worked in the cancer world, who has written about working in the cancer world, who has thought a lot about working in as a nurse in the cancer world and the stresses that are involved in working as a nurse in the cancer world. And yet the moment you're faced with the serious prospect of being diagnosed with cancer, your visceral response is and this is in no way a critique, it's just an observation about the reality of the situation of health care. Your immediate response is to need all of the things done the right way right now, right In the same way that your patients have always wanted the right thing done right now. Right? Why hasn't my mom had her bath yet? Right. But the reason I'm I'm drawing out this tension is because even for someone in your shoes who has spent all of this time thinking and talking and writing about this, it doesn't somehow sand off the rough edges. It's not like it delivered you to some place of Zen like calm, that then when you were faced with the prospect of cancer, it was like, well, whenever the biopsy gets done, that will be just fine, right? Like, that's just not how being human works, right? I think the reason that this is important to draw out is because knowing that back to your point about listening and about trying to develop empathy reminds us that actually when you said to the person that was frustrated with you, I think you're not mad at me, I think you're mad at the situation or the fact that your family member is sick or whatever, but the emotion is coming out in the way that you treat me.
Tyler Johnson: [00:51:12] Okay, so maybe that's not always the most politic thing to say directly to the patient. But I do think it's really important to know two things as health care providers. One of them is that oftentimes the negative emotions that come out toward us are not about us. Right? And knowing that helps to kind of put a little bit of emotional distance, right? Because if I walk into the room and the patient is like shouting at their teddy bear or shouting at their dog or even shouting at their family member, like, that's a thing. But I'm like, Oh, okay, that's a thing. How can I help with this? That's very different than if they're shouting at me, right? So that emotional distance matters. And then the second thing is that as you, I think rightly pointed out, it's also important to recognize that some of this is working in an imperfect and broken system.
Tyler Johnson: [00:52:03] And frankly, there is no perfect system, right, unless you decide to go work for concierge care where you can see two patients an hour or something like the perfect system, which then of course has its own costs because then you're not seeing patients who can't afford to pay for the retainer that allows you to do that. But anyway, but the point is just to say that like some of this is just it's sort of the price that we pay to care for patients who are facing the most difficult things that life has to offer. Right. And like a dear friend of mine worked for a while as a nurse, actually in a place where time constraints were not really an issue, angry patients were not really an issue, but it was because the people that were being cared for were mostly the worried well who really didn't need the care all that much and who were probably getting, frankly, more care than they needed. And so it took away a lot of that burden. But the cost of that was that they were not involved in those most meaningful of human encounters, which for all of the difficulty, you have been right. And I think that it's just worth recognizing that part of that stress and part of that burden comes precisely because the care that's being offered is so important.
Theresa Brown: [00:53:21] Yes, that's a great way of putting it. And I certainly like a revolution in health care. I think a lot of us would. But what I also write about in Healing is that there's been studies of compassionate interventions that, like small interventions, can make a huge difference in terms of not just the pain patients report, but the pain medication that they need. And so I just wanted to feel like somebody was kind of there holding my hand rather than that I was just another annoyance that they had to deal with. You know, it's interesting. I talked with a group of nurses a while ago. I did a book group for the book, and one of them said. What she took away from Healing is receptionists and, you know, the first people that patients meet that really matters, like how those people treat them. And that makes a difference, too. And they hadn't ever really thought about that at their hospital before. So yeah. Pitch for kindness, you know? What's that Robin Williams thing? You never know what someone's going through, so just try to be nice to them. I mean, it sounds like such a cliche, like a poster in a high school guidance counselor's office. Right. But when it's people who are really sick, it matters. It really, really matters. But and you're right, the stakes just feel so high. And that's so fascinating. You're right that as soon as I was the patient, I was trying to be the good patient. But I was also really scared. And I don't care if it's impossible. I want it now because I'm terrified.
Tyler Johnson: [00:55:01] No. And that's the thing, is that it's not about being a good or not good patient or a good or not good nurse. Right. Like, that's the thing is that it's just when it's your life that's hanging in the balance, right. And and it's not just your life. It's the effect that your life has on the life of your children and your spouse and your parents and your friends. And you're right. I mean, it's it's like It's a Wonderful Life all boiled down into the timing of your breast biopsy. Right? I mean, it's just a lot. And I think there's a dimension of that. Don't get me wrong. I absolutely agree about the need for kindness. I agree about the need for reform in the medical system. I agree for the need for systemic changes and personal changes and everything else. And I think even if you could wave a magic wand and just institute all of those immediately, there is still that part of it. That is just the difficulty of humans that are facing hard things together. At least that's sort of what I hear coming through in some of the comments that you're making. To your point at the very end about kindness, if you were a nurse working on the floor again, what is one? Practical, actionable thing that you would like to teach to, like, say, brand new nurses working on the floor that they can do to actually put that into place?
Theresa Brown: [00:56:12] You know, I learned this from the nurse who I precepted with my final clinical. Every time she left a patient's room, she would say, "Is there anything else you need?" And I thought it was really great. And it just invites, you know, I need jello, I need pain medicine. I need someone to listen. I need this question answered. It was also the way she asked it. She would stop and very purposefully ask. I thought it was wonderful. So that's one tip I would give and always introduce yourself because there are so many people coming and going. I would, you know, always say I'm so-and-so and this is my job because, you know, so many people come in and out of patients rooms and sometimes they have no idea who the people are. So which must be disconcerting.
Henry Bair: [00:57:10] Well well, with that, you know, we want to thank you so much again, Theresa, for taking the time to share your unique story and the valuable insights you've learned along the way with us. I'm sure it's going to be, you know, very enlightening for our listeners.
Theresa Brown: [00:57:24] Oh, well, thanks so much for having me. I truly think nurses and doctors just have more in common than we realize. And talking to each other and working together and listening is so important. So thank you for having me.
Henry Bair: [00:57:42] 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 www.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: [00:58:01] 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: [00:58:15] I'm Henry Bair.
Tyler Johnson: [00:58:16] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.