EP191: Navigating Illness and Compassion: A Dialogue with Theresa Brown

The Sacred Duty of Healthcare: A Conversation with Theresa Brown

In this episode of The Girl Doc Survival Guide, Christine interviews Theresa Brown, PhD, RN, a registered nurse, New York Times bestselling author, and cancer survivor. The discussion delves into Brown's experiences as both a clinician and a patient, highlighting the emotional challenges and the need for compassion in healthcare. Brown shares insights from her books, 'The Shift' and 'Healing,' and talks about her upcoming book, 'A Nurse Finds Hope in Healthcare.' The conversation explores the significance of listening to patients, the emotional toll of illness, and the struggles healthcare professionals face within a corporatized system. Both agree on the importance of empathy, self-care, and the need to improve the patient-caregiver relationship.

00:00 Introduction to Theresa Brown, PhD, RN

00:52 Theresa's Journey from Academia to Nursing

01:09 Insights from 'Healing': A Nurse's Perspective as a Patient

01:56 The Emotional and Physical Challenges of Cancer Treatment

04:06 The Importance of Compassion and Communication in Healthcare

05:20 Balancing Information and Emotional Support for Patients

06:16 Personal Stories and Reflections on Patient Care

07:14 The Impact of Personal Illness on Healthcare Professionals

17:23 Finding Hope and Purpose in Healthcare

20:28 Final Thoughts and Reflections

Transcript

Christine Ko: [00:00:00] Welcome back to The Girl Doc Survival Guide. Today I am very pleased and honored to be with Theresa Brown, PhD, RN. Theresa Brown has a PhD in English, she's a registered nurse and she's also a New York Times bestselling writer of The Shift: One Nurse, 12 hours, Four Patient's Lives. Most recently, she's also the author of the award-winning Healing: When a Nurse Becomes a Patient, which is an exploration of her breast cancer treatment in the context of her ongoing work as an oncology nurse. She's currently at work on a new book, A Nurse Finds Hope in Healthcare. She has written extensively for the New York Times and also for CNN.com and the American Journal of Nursing, and she's been interviewed on NPR programs, Fresh Air and Here and Now, as well as appearing on Hardball and MSNBC live. Her PhD in English is from the University of Chicago and, inspired by her kids, she left academia to become a nurse, [00:01:00] and that career change she has never regretted.

Welcome to Theresa.

Theresa Brown: Thank you so much for having me. Still no regrets.

Christine Ko: I'm so glad to hear that. I was able to read an excerpt of your book titled, Healing. I'll just read two lines that I particularly liked so far.

One is, "I became an oncology nurse without knowing why. Then figured it out. Ideally, nursing is a sacred duty." That resonated with me because I think in healthcare it is a sacred duty to take care of people. And then somewhat related to that, but slightly different, you wrote, " They", meaning the people taking care of you when you were a patient, "They weren't unkind, but they were impersonal. And impersonal was hard to take. Pain wants authenticity." Both of those lines really resonated with me.

I was hoping you could talk about your experience as a patient and those lines, what they mean to you. 

Theresa Brown: Yeah, definitely. In 2017, I was diagnosed with a Stage [00:02:00] one invasive ductal carcinoma. Invasive sounds scary, but it, that's what most breast cancers are. Very treatable disease. But cancer is cancer. It is the C word. It's terrifying. And when I say they weren't unkind, but they were impersonal. An example of that is that no one who was taking care of me ever said to me, Look, Theresa, we know cancer is really scary and you're an oncology nurse, so you must really know how scary it is, but this cancer is not gonna kill you. We're not even worried about that. No one said that to me, and I had this weird thing happen that I forgot everything I knew about staging. Everything I knew about breast cancer just totally went out the window. And so I was flying blind and relying on friends and other doctors I knew. It was really hard, and it would've meant so much to me if somebody had made it clear, Hey, this [00:03:00] is not gonna kill you, this disease right now, and we have really good treatments, and then we'll monitor you for 10 years because there is a risk of recurrence. To just take five minutes and lay out what things look like. Instead, I felt like I was on this assembly line. You get on the cancer treatment assembly line, you're going along, and oh, at some point you have surgery, and then you have radiation, and then you start taking Tamoxifen. But it's all very inhuman and lacking in compassion, which startled me a lot because like you and everyone in healthcare, of course I knew there were a lot of problems in the system, but I thought that we all have so much spirit and heart and dedication that we make up for those problems. But when I was a patient, my fear was so immense that I needed more than just, we're making up for the problems. I needed information, I [00:04:00] needed compassion. I needed a sense that somebody was looking out for me.

Christine Ko: Yeah. It does speak to the fact that the way that we practice in healthcare is rote.

Theresa Brown: Yeah. My daughter just um, had her second ACL repair from playing ultimate Frisbee. Same surgeon. Same team. For the first surgery she got this terrible rash. We don't really know what caused it, but she told 'em this time, Yeah, I got this terrible rash. And then they didn't change anything. They didn't change one thing, and she got the terrible rash again. My daughter felt like, I went in, I told them about this, nobody cared. And the thing is, they may have cared, right? But they didn't tell her, Yeah, we can't do anything about this. 

Christine Ko: Yeah, exactly. I think a lot of times it doesn't take that much longer to explain things but we take things for granted. We think, oh, this is obvious to the patient, but it's not.

Theresa Brown: People [00:05:00] said to me, don't you think maybe they knew since you're in oncology, you knew what was going on? And I thought, No, if you come in as a patient, you should be, treated like an adult, but also like you have the understanding of a five-year-old because being really sick and getting a bad diagnosis messes with your head. That's how I felt. The flip side of it is I had a friend who was diagnosed a few months before I was. And her doctors were more clear with her, but it ended up giving her just tremendous anxiety. And so I don't know how you balance that. I would be calmed down by information, but some people, the more information they have, the more upset and out of control they feel.

Christine Ko: It's true. It's really hard. Every patient is just so different. I completely agree with you. I'm someone who wants probably more information rather than less. But as a doctor, I've given patients sometimes actually [00:06:00] too much information, and instead they are really upset, anxious, and horrified. Ultimately, I realized we can only just do our best and apologize. 

Theresa Brown: Right in my book, Healing, I write about a couple we had. I quite like them. When people are diagnosed with leukemia and lymphoma, they tend to have a very long hospital stay, two to three months. So we really got to know this couple. And he didn't wanna know anything. He was a very educated person. He was a lawyer, but that was his choice for his treatment. Just tell me what's next and that's it. She wanted to know everything, and it took us a while to figure that out and then how to address that. If she's in the room asking all these questions, and he feels, I don't want those questions answered, those are not my questions. It's very difficult.

Christine Ko: Yeah. And I think you're right when you were commenting about being a patient, and you [00:07:00] are overwhelmed by the emotional side of it. When you're overwhelmed with emotion, it's hard to understand other people when they're being very clear. It's hard to process it.

Theresa Brown: That's a great point. I often say, in 2017, to my great surprise, I was diagnosed with breast cancer. No one puts that on their calendar. Right? I think, what am I trying to say? Of course, I was surprised. Anytime you get a bad diagnosis, it's a surprise. But I must be getting at what you're talking about, that suddenly I just forgot all this stuff that I knew about oncology and felt really panicked and scared. I'm used to being in control when there's illness. And now it's my illness, and it's quite difficult. I felt lost for a while, like I had lost my nurse self. At that time I was working in home hospice, and I took a leave right away. I could afford [00:08:00] to quit. Some people can't. We've had doctors who worked through breast cancer. We've had nurses who worked through other kinds of cancers. We had a nurse practitioner whose dad was dying of pancreatic cancer, and she was coming to work every single day.

Christine Ko: Yes. I have a thought. I don't know what you'll think about it, but when you say, I was surprised to be diagnosed in 2017, I wonder if it's partially because if you deal with patients because they're an "other". This is true for me. I was diagnosed with breast cancer in late 2022, I felt, But I'm a doctor, how can I now be sick? Which makes no sense because I'm just a human being, not immune to any disease just because I'm a doctor. But I think it was the concept of I'm not supposed to be a patient; like, I'm on the other side of the patient. It's a weird dichotomy that I think I'm still rationalizing out in my mind, [00:09:00] like, Why would I have ever thought that somehow I would never have a serious disease?

Theresa Brown: That's a really good point that I had never quite put into words before that you think, That's not my role. My role is to be the person who helps. And also I think, medical training is so hard, physically, emotionally. Being a nurse can be so hard, physically and emotionally. The training is hard and without realizing it, we developed the sense that we are invulnerable, we can take anything, I can stay up all night, and I don't lose my edge. And and then having a serious illness just really shatters that. And I think until this moment, I had not thought how invested I was in that sense of invulnerability. I think I'm a better nurse now because of it, but it makes everything a little bit harder. 

Christine Ko: Yeah, I agree with you. I do think I'm a better [00:10:00] doctor for having been through a somewhat harrowing breast cancer experience. I didn't know ahead of time how exhausting it would get, and I didn't take that into account. And I would, I think, just push myself like, Why is today any different than yesterday or last week? But I think it, it becomes harder, the longer the treatment goes on. And I just didn't know that. And so I think that's one thing that I take into account now with patients that it doesn't necessarily become easier with time, that sometimes it's harder with time. That's something I didn't really realize.

Theresa Brown: That's right. There's a cumulative physical effect. There can also be a cumulative emotional effect. I remember a hospice patient I saw who had, pretty young school age, like elementary school age kids, and. I was, it was home hospice. I was there in their house and the kids had just gotten home from school and all they wanted was to be with [00:11:00] their mom, and I could look at her and see that she wanted to be there for them, and she also just felt so tired. All she wanted was just to be left alone, and it was so poignant. I'm not sure if we're always good at seeing those tensions in people's lives. We're not a kind and generous people when it comes to illness, and that has an effect also.

Christine Ko: I say harrowing now because I pushed a lot of it to the side and so then I had to deal with it later. Which I think is not necessarily bad. It's okay to deal with things later if you have more mental space later. What I don't know is, the whole experience, would it have been less traumatic to me if I did deal with things as they were coming instead of just smushing things down. I don't know. As you wrote, when you're in pain, you do want to be treated authentically.

Theresa Brown: Act like it matters. Obviously as you [00:12:00] say, it becomes rote. If you're the person whose job it is every single day to give all kinds of women their breast cancer diagnosis, it's easy to forget that each woman is living her own individual life. And for her, this is gonna be the worst days of her life. I get why people get jaded or cynical or lose a sense of urgency, but we need to bring that back into our healthcare system and remember that each person is unique.

Christine Ko: Yes. I think that's I think the most important lesson that I gained from my own experience, that every person is different, and we just have to try to remember that this is a unique human being in front of me. I don't really know how they're gonna react to a diagnosis, or the treatment, or a delay in treatment, or having to wait for something, whatever it is, or waiting even just for an appointment.

Have you thought [00:13:00] about how we can do better, like when we're on the medical side for patients, or even as a patient, how you can do better? 

Theresa Brown: Listening. Try to lead first with listening and get a sense of where the patient is really instead of starting with a spiel, although I know that happens because everybody is really pressed for time.

And I'd say also, we all as clinicians need to be generous to ourselves. That may make it more possible for us to be generous to patients. And that might come down to you saying, I am really sorry I don't have that long to talk to you, but what do you most wanna talk about? Or, let me give you the basics and you could call back and talk to my nurse. Honesty about how much we want to help, even if we can't, to the extent that person needs or maybe that we would like to. And I think [00:14:00] also accepting that, some people, what you have to offer is never gonna be enough, and how do we accept that without becoming cynical about it? Which is really hard. I feel like it's only as I've like literally gotten older that I have the wisdom to see that. When I started in nursing, and I came to nursing older as a second degree student, and people said, you can't take care of other people if you don't take care of yourself. And I thought, that's not true. I can do everything. I'm super nurse. And then, slowly I realized, Wait, that actually is true. I'm not super nurse, and no one else is either, and there are no super doctors. I think we want to believe that we can be there for others even if we're not there for ourselves, and that's getting it completely backwards.

Christine Ko: Yes. There's a a PhD researcher in compassion. Her name is Yu Tse Heng. She says that you cannot actually give others compassion. [00:15:00] if you're not giving it to yourself.

Theresa Brown: Yeah. Now there's corporatization of healthcare and huge emphasis on money and the bottom line. These are realities, and they make everyone feel pressed for time. When I talk to patient groups, I say, the one thing you've gotta know is everyone in healthcare is busier than they want to be or maybe have capacity for. Everyone. And it's not that they don't care, but it's that they're trying to figure out how to do the job and care the way they want to at the same time while getting all their paperwork requirements done and this and that. Nurses and physicians really struggle with all the bureaucratic requirements.

Christine Ko: Yeah. It's a constant battle, I think, on multiple fronts. Going back to your sacred duty comment about nursing, about being in the healthcare profession. I think it is a battle 'cause [00:16:00] you have a sacred duty. And yet if you really have only one minute with someone, how are you going to be successful in that? It's literally impossible. I do appreciate your comment on that we could be a hundred percent fulfilling our sacred duty to someone, and yet their expectations are never gonna be satisfied for whatever reason that is for that person. Not necessarily that they're unreasonable, but just, what they want is just not within the scope of what we should even do even with a sacred duty.

As a patient, I would want everyone treating me to be a hundred percent perfect. Because I don't want someone to make a mistake on me. So it's a really difficult thing that we want a hundred percent perfection as a patient. From the other side, when I'm treating people, it's not like I would ever say to myself, Oh, I'm okay making a mistake on this person. No. That's not okay with me. [00:17:00] Going to your comment earlier on, that being a patient has made you a better nurse, but in some way it's harder. I agree. Being a patient and then now having that perspective when I am doctoring, it makes it harder because there's a little bit more even to think about. And when I fail, 'cause I still do fail, it feels a little worse.

Theresa Brown: Yeah, definitely. For me, I finally admitted to myself I am burned out, and I decided to go look for hope in healthcare. And the book manuscript I just turned in, will be coming out next fall, is about that search for hope. I went to a midwife center, a place that does in-home primary care, an elder care place, and then palliative and hospice care, different parts of the country. I found these programs where people really are just giving great care and also struggle to pay their bills.

We [00:18:00] underestimate the value of time and listening. What I would love is if my book led people who make these decisions about how we spend our money to think, Maybe we could put a little bit more of a focus back on people. I'm an idealist, so I'm hopeful that healthcare can find a way to be what it ideally needs which is to take care of patients and the clinicians really well. 

Christine Ko: It's hard to figure out how to do right by patients in the limited time space that we have and in the midst of the corporatization of healthcare, it's true. 

Theresa Brown: Yeah, and I'm not one of these people who thinks that AI is gonna solve all this, but if AI could be used to say, make charting quicker, have it make more sense, that would be something wonderful right. To routinize tasks like that so that the actual [00:19:00] being with patients feels less routine. 

Christine Ko: Yeah, absolutely. Yeah. So your new book is called A Nurse Finds Hope in Healthcare. Yeah. 

Theresa Brown: Yeah. Although that may change.

Christine Ko: Okay. So tentative title A Nurse Finds Hope in Healthcare, and that'll be coming out in fall of 2026. So we can look for that. I think it's wonderful that you are an idealist. I think that you are a beacon of hope in healthcare. Have you made changes since writing Healing and also your newest book?

Theresa Brown: Yeah. Once I turned in the book, I thought, I wanna go back. I wanna be in some kind of clinical capacity. And that feels amazing. I like feeling like I'm part of something bigger than myself. So I would say that's the biggest change, and it feels great that working on the book, I remembered all the good that we do, even within an imperfect system. I came full [00:20:00] circle from that angry patient and embarrassed clinician realizing, Wow, I failed people all the time. I didn't even know it, to: Yes, there can be angry patients, there can be clinicians that fail, and there can be good care, and you can have all three of those things existing simultaneously. 

Christine Ko: Yes. And if we're not even trying, then we won't fail, it's true, but we won't be able to make it better either.

Theresa Brown: That's right.

Christine Ko: This has been inspiring to me. Do you have any final thoughts? 

Theresa Brown: I just wanna say it's great to have a doctor like you asking these hard questions, and you came to a nurse, which I love, and one of my goals as a writer has been to get nurses and doctors to look at each other more as colleagues. Thank you for being interested in these questions and for saying we're all doing this work together. Let's try to find [00:21:00] ways it can work for all of us. 

Christine Ko: Yes. Absolutely. Thank you Theresa. It was such a pleasure to talk to you. 

Theresa Brown: Likewise.