Lessons From a Lifelong Patient Turned Oncologist – Medpage Today

“The Doctor’s Art” is a weekly podcast that explores what makes medicine meaningful, featuring profiles and stories from clinicians, patients, educators, leaders, and others working in healthcare. Listen and subscribe on Apple, Spotify, Amazon, Google, Stitcher, and Podchaser.

Born with hemophilia in a time before effective therapies existed, and having experienced treatment complications including hepatitis C and HIV, Eric Winer, MD, spent much of his childhood and young adulthood in and out of the hospital. Today, he is the director of Yale Cancer Center and president of the American Society of Clinical Oncology (ASCO), the largest organization of clinicians caring for cancer patients. An internationally renowned expert in breast cancer, his research has immensely impacted how breast cancer is now treated. In this episode, Winer shares his path to oncology and his insights from being a lifelong patient on stigma, compassion, and empathy.

In this episode, you will hear about:

1:50 How growing up with hemophilia led Winer to the field of medicine

7:55 The patient that cemented Winer’s dedication to oncology as his life’s work

12:52 Winer’s reflections on how his experiences as a patient shape his work as a doctor

18:21 Facing the reality of caring for patients with terminal illness

23:49 How Winer grounds the care he provides in the humanism of each patient

25:49 Winer’s mission and vision as president of ASCO

31:02 How leading by example is critical to cultivating a strong, respectful, and collaborative institutional culture

22:12 Winer’s advice to medical students and new clinicians on maintaining a connection to meaningful work

Following is a transcript of their conversation (note that errors are possible):

Henry Bair: Hi. I’m Henry Bair.

Tyler Johnson, MD: And I’m Tyler Johnson.

Bair: 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?

Johnson: In seeking answers to these questions, we meet with deep thinkers working across healthcare, from doctors and nurses to patients and healthcare 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.

Bair: We are fortunate to be joined by Dr. Eric Winer, who is the director of Yale Cancer Center and current president of the American Society of Clinical Oncology, the largest organization representing clinicians who care for cancer patients. Dr. Winer is an internationally renowned expert in breast cancer, and his research has profoundly impacted how we treat breast cancer today. In this episode, we discuss his path to oncology and how he approaches his patients with tremendous compassion and empathy shaped by his own experiences as a lifelong patient with hemophilia. Dr. Winer, welcome to the show and thanks for being here.

Eric Winer, MD: Thanks. Pleasure to be here.

Bair: Dr. Winer, you have led such a remarkable career, having developed some of the most important drugs for treating breast cancer in use today and having led some of the most influential cancer research institutions in this country. But can you take us all the way back to the start and tell us what first drew you to a career in medicine?

Winer: So as a kid, I actually always thought I would be a doctor. I grew up having hemophilia, and in those days the treatment was relatively limited. And so I spent a fair amount of time around hospitals as a kid and in hospitals. And then when I was a teenager, actually, treatments improved a great deal. And I went on prophylactic factor VIII and I had a much more normal life, but I still felt this draw at that time to want to be a doctor, to just be part of a profession that had influenced my life so much.

That said, I didn’t think I was a very good scientist. Certainly among my worst subjects in high school were chemistry and physics. And I arrived at college, I went to Yale and I thought, “Gee, you know, you have this romantic idea that you want to be a doctor, but is that really what you’re good at?” And in college, I didn’t take a single science course. In fact, I avoided everything that in any way could be construed as scientific. And I did a double major in history and Russian and East European studies and actually started in graduate school in Russian studies the year after I finished college.

That said, I kept struggling with this, again, romantic idea that I wanted to be a doctor and I had this pull. And every time I would go to Children’s Hospital in Boston and pick up my shipment of factor VIII, and I would see all the young doctors in their white coats and what have you. I think, “Gee, I really want to be one of those people.” So I ended up trying to take organic chemistry while taking Polish and Russian history courses and Russian literature courses. And my director of graduate studies wouldn’t let me do it. So I dropped out of my master’s program, and I just took pre-med courses and that’s sort of the history of it. And from there I went on to medical school, and my career has been what it’s been.

Bair: Unintentionally many of our guests on the show. Again, not because we deliberately sort them out, but Tyler and I have noted that so many of our guests on the show have not studied medicine in college, myself included. And Tyler, too. I think he was an American studies major in college. I was a medieval studies major in college. I studied Latin and I studied Celtic history. So it’s just funny how those things work sometimes. So briefly, I wanted to go back to something you had mentioned. Can you just give a quick summary of what hemophilia is and what factor VIII is?

Winer: So hemophilia is a bleeding disorder. It’s an inherited bleeding disorder. My grandfather had hemophilia. My mother, as a result of being his daughter, was an obligate carrier, meaning she had the gene that could be passed on. It is X-linked. So women are not affected, women are carriers and only men are affected. So when I was born as a male, there was a 50/50 chance that I would either have the gene or not, and I did. And what hemophilia is is essentially a deficiency in factor VIII. One of the coagulation factors and the big change in treatment for hemophilia came about in, I would say probably about 1970, when it became possible to administer factor VIII. And it was made by taking the plasma from many, many thousands of donors and from that deriving just the factor VIII.

Bair: I see. Thank you for telling us about that. So you’ve described your journey to medical school. Can you tell us then how you decided to move into oncology eventually?

Winer: So in medical school I actually thought about being a psychiatrist, but ultimately decided that I would apply in internal medicine, and as an internal medicine intern and resident, I found that oncology was the most compelling of all of the areas I was interested in — taking care of patients with cancer. I was interested in both the experience of taking care of patients with cancer, but I was also interested in the science behind cancer research.

Bair: Out of curiosity. Do you feel like your non-medical undergraduate studies had any bearing on your decision to enter medicine or your subsequent approach to medicine?

Winer: You know, I’ve often wondered whether I was in some ways at a disadvantage in medical school, not majoring in a science as an undergraduate. I think that some parts of medical school were a little harder than they would have been. But in truth, I think that having had a different kind of background allowed me as a doctor to feel somewhat better rounded and have a whole different set of conversations with both my patients and my colleagues. I think for young people who are considering what they’re going to do with their lives, I think it’s perfectly fine to major in science and move forward and go on to medical school. But I also think it’s fine to do something different. And especially today, all of my kids took off time between college and graduate school. I do have a child who went to medical school. He did take off time too. And so I think for somebody who does something different, they can make up for what they didn’t do in those years.

Bair: It’s great. So as you describe your path to medicine and then to oncology, you know, it seemed like there were multiple options along the path that you could have chosen. Was there a moment, was there a patient whom you cared for who really demonstrated to you that oncology was the most meaningful work that you can do?

Winer: You know, I think it was a lot of experiences. In truth, I do remember a single patient who I cared for when I was probably an intern who was a young woman with leukemia. Of course, I did not become a leukemia doctor, but a young woman with leukemia who was facing the very significant chance that she might not survive this. And I’m not quite sure what it was, but I was very much drawn to wanting to take care of people who were in this kind of situation. You know, I think some of it relates to the fact that I almost became a psychiatrist in that there’s a lot of psychosocial care that is part of being an oncologist and maybe even more so back then than today, although it’s still very much part of the care that we provide today. How did I become a breast cancer doctor, of all things? In truth, it was a combination of both interest and what was possible. I was at Duke at the time, and the breast cancer doctor at Duke left and went into a private practice in Florida and they needed somebody.

And I was interested in breast cancer, and I basically raised my hand and said, I’ll do it. I stayed there for 8 years on the faculty, spending most of my time taking care of women and occasionally men with breast cancer, doing some limited breast cancer research. I got involved in our breast cancer spore grant. These are large grants that fund translational research. I learned, I think more than anything else, a great deal about how to take care of women with breast cancer. In my years at Duke, I actually thought that I would be a huge loss to Duke if I left, because I was, I thought, a very good and busy clinician, but I didn’t really think that I would be very appealing to any other center because I was mostly a pure clinician. And I found that I started getting offers to move elsewhere. And it was after 8 years at Duke that I was asked to run the breast cancer program at Dana-Farber. And in truth, it was an offer I couldn’t refuse.

Bair: I find it striking that when I asked you about a meaningful patient encounter you experienced, you shared a patient for whom the psychosocial element ended up being a very important part of her care. Can you tell us more about what that actually looks like and how you take all of that into account when you approach your patients?

Winer: To this day, and I don’t do a huge amount of clinical work anymore. I see patients half a day a week. But to this day, I am always excited, if you will, about seeing a new patient. It’s a new adventure for me, and I’m excited about the medical issues, the oncologic issues, but I’m also excited by meeting somebody. When I think about meeting a patient who has a new diagnosis of cancer or for that matter, meeting somebody who’s been living with cancer for quite some time and who’s coming to see me for a second opinion.

I imagine that there’s essentially a door into their lives that they opened for me because cancer, for whatever reasons, is something that in our society people are terrified of. People just have a different approach to cancer than they do to many other medical illnesses. And so I think this provides the clinician, whether it’s a doctor or whether it’s a nurse practitioner, this opportunity to walk into someone’s life and into their family’s lives, and you can decide to turn that invitation down. I think if you do, you’re denying yourself a pretty rich experience. But in my mind, providing psychosocial care is about getting to know somebody and knowing them beyond just their cancer diagnosis and figuring out how you’re going to support them through the cancer diagnosis. And you’re not going to do it by yourself necessarily. You may involve the nurse who you’re working with. You may involve social workers. You may involve psychiatrists. It’s a whole range of possibilities. But I do think that when it’s needed, and it’s frequently needed, providing psychosocial support is something that’s incredibly important.

Bair: In what ways have your own personal experiences as a patient shaped how you care for patients?

Winer: So I will say that I have had a lot of experiences as a patient. In addition to having hemophilia, and as a result of having hemophilia, I was diagnosed with HIV in the early 1980s. I had hepatitis C, I’ve had a number of complications from various therapies. I consider myself to be an unbelievably lucky person, since in the 1980s, when I had HIV, I was also taking care of people who were dying of HIV. And it was by no means straightforward and easy. In truth, when HIV was at its worst, I was on to other things and was an oncologist, not an HIV doctor. So I wasn’t doing that regularly. So I’ve had a significant number of patient experiences in my life. The experiences as a patient myself, I’m often struck by the fact that some doctors really do a great job of knowing who you are and relating to you. And in particular, I’ve had an infectious disease doctor at Brigham and Women’s Hospital for the past 25 years who sort of gets me. But I’m also shocked by how many doctors I meet who in taking care of their colleagues — you know, I mean, I’m not somebody that they should have difficulty relating to — just can’t remotely in any way learn anything about who I am. So I think that’s taught me how important it is as a doctor to really get to know the person behind the illness.

No one is their illness. There’s always a person behind them. And how they feel about that illness and how they deal with it is very, very important. And so I think it’s taught me that. I also have to say that my own experiences with HIV, in particular back in the 1980s and 1990s have taught me a lot about the problems with stigmatizing illnesses. And I think cancer was often stigmatized in the past. I think that’s much less the case now. Certainly HIV was. But it’s really, really problematic when illnesses get associated with negative thoughts on the part of providers.

So I will tell you that when I was a medical resident, I was getting dental care from what I thought was a reasonable dentist. This was actually before I even knew officially that I had HIV, but he knew that I had hemophilia and he walked in and he said, “We can’t take care of you any longer.” I said, “What are you talking about?” He said, “You’re making the staff here uncomfortable. And I can’t see you.” My dentist fired me, basically. I searched for about a year to find another dentist who would see me. And I will tell you that when I finally found another dentist who would see me, and I had had some dental problems, I was just so thankful that this person would see me. You know, I think stigma can be really, really damaging.

I’ll also say that many of the things that I say to patients in one way or another sort of come from some of my own personal experiences. So I often warn people. That when they have a new diagnosis of cancer, that there are people who they can talk to who will be really helpful. And there are people that they can talk to, meaning their friends, who will really not be helpful, and who will either start crying or will simply drop them as friends because they can’t deal with it. And with that in mind, I always tell people, you got to be careful about who you tell initially because you want to maximize the support you get. And of course, the exception to that, I always say, is your parents and your children, like you don’t have any choice. If they react in a way that’s not great, you still got to deal with it. But everybody else, you really have a choice about whether you tell people or not. And some people are helpful and some people aren’t. And it’s interesting. I have a friend who recently was diagnosed with a glioblastoma. This person very deliberately told some people and very deliberately didn’t tell others and was really wise about how he made these choices. I’ve given you an earful. I’m sorry.

Bair: No, this is all great. You’ve given us a lot to ponder about. After all, most clinicians do not have the kind of personal experiences with illness that you have.

Winer: I never thought I’d see my kids grow up. Like, I am the luckiest guy in the world. I am the guy who has benefited from advances in medical science every step along the way. And why it is that I’m in my 60s, and I’ve survived this long? Who the heck knows. But I never thought I would see my kids grow up and look, I did. So I feel really, really fortunate.

Bair: Dr. Winer, I’d like to delve more deeply into your patient encounters, and specifically the moments when things don’t go according to plan, when things don’t go well. The difficult moments for the non-oncologists among us and for those who are not healthcare providers. Cancer can seem like such a massive, daunting enigma. Terrifying to think about and even more scary to confront.

Now, I’m certain many of your patients have enjoyed successful recovery and gone on to live their lives. But what happens when things don’t go well? You know, you’ve talked a lot about connecting with patients, hearing the patient’s story and being a part of their lives. So I have to ask, how do you face the most difficult of moments when a cancer is not responding to treatment or when a terminally ill patient nears the end of her life?

Winer: I have encountered hundreds of patients who have died. Hundreds of women largely with metastatic breast cancer who have died. Many of whom I think about with some frequency. I look around my office and I can, without looking very hard, see gifts from five or six different people who are no longer alive. So the way I deal with that is, number one, I always try my best. I always try to communicate with people. And I try to be there for them. There are some people who have become particularly close to where when they die, I’m sad. And, you know, I feel sad for some amount of time. But in truth, the way I primarily deal with it is by trying to be part of the experience and feeling like I’m there for somebody when they need me. Look, I’m a busy guy — I have a bunch of leadership roles, I do research, I have all sorts of things going on — and so I can’t always be physically present every single visit and what have you. But I stay pretty connected to people and have over the years, and in fact, the ones that are the hardest are the ones where I wasn’t able to connect.

And whether it’s because somebody just didn’t seem to want to connect or because I came in just at the very end and couldn’t really form a relationship, those are the ones that are hard. I mean, I think that there is just a tremendous amount of joy one can take away from medicine, and a lot of fulfillment. And I think sometimes that’s about helping people with really bad situations. And so I just do my best. Again, you know, I’m looking around here, and I’m seeing all sorts of gifts from people. I’ll just tell you that I have a snowshoe hanging on my wall. And that snowshoe was from a very remarkable woman who came in about 6 months after she was diagnosed with metastatic breast cancer. And she said, I think of you as the person who’s keeping me from going under. And that’s why she gave me a snowshoe, because snowshoes keep you on top of the snow. And she said, you get one snowshoe, and you get a second after you’ve kept me alive for 5 years.

She had hormone receptor-positive breast cancer, and I actually thought that she had the potential to live 10 or 15 years, even without advances. And I said, OK, I’m going for two pair, which would mean 15 years. And she signed it and signed this snowshoe every year that she was alive. So I had four signatures on the snowshoe, and she died just before the fifth year. And it was really sort of unexpected. But I’m just honored to have that snowshoe on my wall. I’m sad that she’s not around. I think of her with some frequency, you know, probably at least once a week or so.

I think that being a doctor has been, for me, an enormous gift. And I actually think that the two things that have kept me around personally in this world — three things — as long as as I’ve been here, are what I’ve done as a doctor and all that I’ve been able to receive back from my patients. And I’m not talking about, obviously, physical gifts. The second, of course, is my family. And the third, I will acknowledge, is exercise, which is my drug of choice. But being a doctor has been so meaningful for me. I mean, I wouldn’t trade it in for anything in the world.

Bair: I think for a lot of young clinicians and medical trainees like myself, we look around in our workplaces and we see that there seems to be an unwritten rule of sorts where we try not to get too emotionally invested in our patients, for that puts us at risk of being emotionally compromised, which then has the potential of clouding our clinical judgment. But then, on the other hand, you don’t want to swing all the way to the other end and forget the humanity of the patient. So how do you approach thinking about striking that right balance?

Winer: So I think that I can connect with people and not lose my ability to to make decisions. And I think that there has been an occasional patient where I feel like I’ve known them so long, and I’m so close to the patient and the family, that sometimes I think it’s hard for me to make a decision that there just isn’t more treatment. And that’s a time, although there are many times like this when I go to my colleagues and I run people by my colleagues and see what they think.

But I think that you can be connected to people and certainly maintain your clinical judgment. You know, of all the things in the world that I’m feel good about is that I’m a good breast cancer doctor. We can debate all the other things I do in my life. And I keep asking questions. You know, I talked to somebody on the phone the other day who has a very, very unusual breast cancer situation. And I said to her, well, I’m going to see you in a week and a half and we’ll talk more then. But in the meantime, I’m going to talk to a bunch of my colleagues about you to see what they would do. So I do think it’s very, very important as a doctor always to be open to other people’s ideas.

Bair: It’s wonderful. I would love to turn our focus to your leadership role, which, as you mentioned earlier, is most of how you spend your time these days. So, Dr. Winer, you recently assumed the role of president of the American Society of Clinical Oncology, which represents over 46,000 oncologists and affiliated clinicians all over the world. As you embark on this next phase of your journey. What are your overarching mission and goals?

Winer: Yeah. So, you know, not remotely to toot my own horn. You know, I’m also a new cancer center director at Yale. My life is a little complicated. We’re not aware of anyone who has both been an ASCO president and has taken on a new institutional leadership role. But it’s all good.

My presidential theme at ASCO is partnering with patients the cornerstone of clinical care and research. And that can go a number of ways, but is really meant to focus in a couple of areas. First and foremost, it’s meant to emphasize the importance of that partnership and the richness of that partnership. And from a clinician standpoint, I think recognizing how important that partnership is and letting yourself be a partner with the patient is critical. And I think it is one of the ways that we can help avoid burnout. I think burnout is about lots of different things, but among others, I think it’s not having that connection and feeling like one is spending all one’s time, you know, keyboarding. And so I think reestablishing that connection is very, very important. And from a patient standpoint, I think that we need to recognize that patients are our partners and that by being our partners, we’re going to help ensure that they get the best possible care.

And that partnership needs also to extend to people who traditionally have not been able to get great care. Minority groups, people who aren’t as well educated as others, people who are living in poverty. And I think that we need, as part of that partnership, to continue to focus on all of the disparities that exist in cancer care and work to eliminate them. I’ll tell you that — and this is true both in my ASCO role and in my Yale role — I’m struck that in the next decade, for the majority of malignancies, we’re going to have therapies that are either fully curative or allow us to keep people from dying of cancer. And that it’ll be the minority of patients — maybe there’ll be some cancers that we still haven’t tackled — but I think it’s going to be the minority of patients for whom we don’t have great therapies for. And it’s almost already happened with breast cancer. We’re a few years away. But once that happens, the big problem is delivering that care. And so cancer care disparities become first and foremost. And so both at ASCO, it’s a message that I’m going to continue to deliver that we have to make sure that we can deliver this great care we have to everyone.

And in my role at Yale. We are, of course, trying to continue to improve therapies with clinical trials, continue to do the fundamental science that allows us to better understand cancer. But we’re also very focused on trying to eliminate cancer care disparities. You know, I always think of myself as a camp counselor. I’m good at bringing people together and good at trying to make it feel good. I think leadership in medicine is incredibly important, and I think that there are a number of attributes of leaders that sometimes are present and sometimes aren’t. But my own approach has been to be essentially a servant leader. As such, I think one has to recognize it’s not about you, it’s about everybody else. That doesn’t mean that you have to totally lose your own ego, and it doesn’t mean that you can’t want to be successful or that you don’t want your center to be successful. But what it does mean is that you recognize that success is about other people’s success, especially in 2022. It’s going to be teams of people that take care of patients that do cancer research clinically and do cancer research in terms of fundamental research or health services research. And we really have to pay attention to building teams.

Bair: In your capacity as the leader of this prominent organization, how do you ensure that your vision for greater teamwork between clinicians and greater shared decision-making between patients and doctors percolates all the way down to the clinicians who are working on the ground.

Winer: Well, you know, I do think it’s important to lead by example, among other things, as such. For clinicians, it’s one of the reasons why I continue to see patients and I’m still in clinic. I thought there might never be a time when I would be willing and capable of giving up clinical medicine. I still love it. But, you know, in truth, I have a lot of other things on my plate and I could, in theory, give it up, but I can’t because I need to do it to be the kind of leader I am. And I also still really enjoy it. But I think that one has to expect that the leaders who are below you, who may not be the people on the front line, but that this is going to percolate down.

I do think that within any organization. Among the most important features is the culture of the organization. Culture is something that is hard to build. It’s pretty easy to lose, and it’s absolutely critical in any organization, it’s not just a medical organization. You have to respect your leaders as people who are both looking out for you and who are standing up for what you believe is right. I do think that we can’t overcommunicate, and communication is such an issue. And as you probably know, any time there are changes, one needs to communicate, communicate, and communicate more. And the reason that many, many plans for change fail is because of inadequate communication.

Bair: Dr. Winer, over the course of this conversation, we have discussed stories of patient care, of compassionate communication, of navigating the tough moments in medicine. Many of our listeners are early clinicians and trainees. What advice do you have for them about maintaining a strong connection to what ultimately matters most in medicine?

Winer: I think that as a young clinician, you have to pursue what gives you joy. I always tell people that the best work they’ll ever do is the work that makes them happy and that they truly love. There are some young clinicians who probably shouldn’t be clinicians the rest of their lives, and they should do other things. But for those who feel like they really want to do it, I think that one of the real secrets is that the relationship that they have with patients is going to be critical to their happiness in the future. And I would bet anything that if you graft satisfaction with career — for clinicians, this is clinicians only — and sense of of satisfaction with the doctor-patient relationship, that there would be very, very high correlation. I actually think that it is the doctors who feel the best about their ability to have relationships with patients who find medicine the most rewarding. And I will give you an example of a group of people who you would think should be totally burnt out and who aren’t. And that’s palliative care doctors. And why aren’t palliative care doctors burnt out? In my view, they’re not burnt out because they spend time with people. They talk to each other, they support one another, and they feel that what they’re doing is very meaningful. And it’s ultimately meaning that makes most of us happy. Doesn’t really matter if you make an extra $5,000 or $10,000 or whatever. But it’s it’s meaning that a young clinician should be seeking. And that has a different definition for each person.

Bair: On that note, I want to thank you again, Dr. Winer, for taking the time to join us in conversation and for sharing your insights and stories. It’s been a true privilege.

Winer: Thanks.

Bair: 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 The Doctors Art. If you enjoyed that episode, please subscribe, rate and review our show available for free on Spotify, Apple Podcasts, or wherever you get your podcasts.

Johnson: We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program.

Bair: I’m Henry Bair.

Johnson: And I’m Tyler Johnson. We hope you can join us next time. Until then, be well.

If you know of a doctor, patient, or anyone working in healthcare who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments or send an email to [email protected].

Copyright © The Doctor’s Art Podcast 2022.

Leave a Reply

Your email address will not be published.