Episode #57 of the Charged podcast
About the Episode
Rachel Sisodia, MD, gynecologic oncologist and surgeon, believes that it is critical to strike a balance between doing what is needed to treat someone's cancer and honoring what is most important to them. She sees it as her duty to understand each of her patient’s unique, personal goals, and embed them into the heart of their care to pursue the best possible outcomes for overall health and quality of life. She partners with each patient to fight cancer together as a team.
In this episode of Charged, Dr. Sisodia talks about her experience caring for women with cancer, her efforts to promote women into leadership positions and ensure they have a seat at the table, and her work leading the Mass General Brigham patient reported outcomes program, the world's largest collection of measures that involve patients describing, in their own voices, the quality of the care they received.
About the Guest
Rachel Sisodia, MD, is a gynecologic oncologist and surgeon in the Department of Obstetrics & Gynecology and the Massachusetts General Hospital Cancer Center, the senior medical director for Specialty Care and Patient Reported Outcomes (PROMs) at Mass General Brigham and the medical director of the Massachusetts General Physicians Organization. In her role as senior medical director of PROMS, Dr. Sisodia oversees physician-led work that focuses on improving the quality and transparency of surgical and specialty care, its outcomes and the overall patient experience.
Her clinical interest is primarily in providing high quality and safe surgical and clinical care. She is passionate in utilizing the latest research and techniques to thoughtfully care for young women with gynecologic cancers who still desire to have children or build their families.
She received her medical degree from Emory University and completed her residency in obstetrics and gynecology at the combined Brigham & Women's/Mass General program at Harvard. Following residency, she completed her fellowship training in gynecologic oncology at the Mass General.
Dr. Sisodia is an associate professor at Harvard Medical School and serves as a co-chair of the Quality Committee of the national governing body in Gynecologic Oncology.
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Q: Rachel Sisodia, a gynecologic oncologist and surgeon in the department of OB-GYN and the Mass General Cancer Center, is dedicated to improving the care of her female patients by balancing what is most important to them with what is medically and surgically required to treat their cancer. And once she was established in her career, she began to notice something. Doctors and patients do not always define success in the same terms. For patients, success is often thought of in the context of quality of life. Whereas, doctors tend to regard outcomes such as mortality and readmission rates as the gold standard.
While quantitatively measuring success is important, Rachel believes that it is a doctor's responsibility to also prioritize the lifestyle goals of the patients they serve. This observation led Rachel to assume the role of Medical Director of the Patient-Reported Outcomes Program at Mass General Brigham, a program that she and her team built from the ground up, that collects comprehensive data straight from the patients on what is most important to them following treatment. Now the largest program of its kind in the world, it is given doctors the resources to improve the quality of care they deliver with the patient in mind. For Rachel, an operation is only successful if it improves the patient's quality of life by their standards. So welcome Rachel.
A: Thank you Kelsey. I'm delighted to be here.
Q: I'd love to just start with exploring a little bit about your clinical work. Can you talk about what it's like to care for women with gynecologic cancers?
A: As a GYN-oncologist, you’re first trained in obstetrics and gynecology. Then you do gynecologic oncology after that. And so it's a total of seven years of training after medical school. And in our practice, our training is so long because we do the following things. We perform surgery for women with cancer. We give them chemotherapy. And if their cancer comes back, we provide palliative care until they pass away.
And I would say for me, with the exception being a mother, it’s been the greatest honor of my life. Most GYN oncologists pursue this profession because it's so intense. No other doctors own their patients from disease genesis until they die and take responsibility for all of those things. And so for us, it often feels like being like the last firemen in a burning building.
It's this incredibly intense relationship you make not only with the patient, but with their family. When one patient gets cancer, the whole family gets cancer is how we think of it. Normally, a surgeon may operate on a patient, get them through their post-op recovery, send them on their way. Or medical oncologists may inherit a patient after they've undergone surgery and the surgery failed, or if the cancer progressed through that.
Or a palliative care doctor might see a patient once they progress through chemo and surgery. We do it all, which means we feel this tremendous level of ownership. But also have this really intense relationship and this deep feeling of ownership for how that patient does.
Q: And was this something, Rachel, that you always knew you wanted to do?
A: Ever since I was very, very small, I always wanted to be a physician. My parents brought us up that you needed to do something that helped other people and something that maximized your skill-set. So to me, a physician embodied both of those.
So I knew I wanted to be a doctor. But when I was in medical school, I knew I craved a profession that had intensity to it, that felt like a reason to get up in the morning. And I sort of went back and forth between surgery and OB-GYN.
I also have a background in, sort of, women's studies and feminist philosophy. And ultimately, GYN oncology was this hybrid world. One of my advisers said, “Well, if you like intense experiences, you've got to go to a Gyn Onc and test that out. And then, from the very first day of that rotation, I knew that’s what I was going to do for the rest of my life, as a third-year med student.
Q: And you've used the word intensity. So I'm wondering if you can just put a little more bit more description around that? It sounds like the relationships you create are very intense. Are there other aspects of your work that you would sort of define in the same way?
A: This field is earmarked by intensity throughout. So we'll take the case of ovarian cancer, for example. Ovarian cancer is a very scary disease. It's a very aggressive disease. So from the very first, it's this incredibly serious encounter with another human being that feels like they're staring death in the face.
And behind that human being are all the things they care for and they're responsible for. And the things they haven't done yet their life and the things that they wanted to be and who they wanted to be. And how they dreamed that their next 10 years would go on analyzing questions. So you're dealing with that through the whole encounter.
When you're counseling these women for ovarian cancer in particular, we don't know what we're going to have to do until we get in the O.R. So I have to take another human being and say to them, “You may come out of this with a colostomy. You may not. I may remove five or six organs. I may not.”
In the case of a young woman, “I may have to remove all your gynecologic organs. You may never be able to have a child. You may not.” So you have this incredibly intense experience, where you then say to someone, “When you wake up, you may be meaningfully different than when you started from. And I can't even prepare you for this, but that's what I have to do to cure your cancer.”
So very quickly, you have to establish that rapport. You've got like a 60-minute visit to walk someone through that, get them to trust you. Then you go to the O.R., which is, I always say, the O.R. is the most honest place in the hospital. You said you could do something and either you can do it or you can't and someone's life hangs in the balance. You them through that operation. Then you get them through the post-op care. And then you give them this really heavy chemo, when they lose their hair. They're sick. They have to stop their jobs. And then you get them into remission, which is this kind of amazing period where people are sort of reborn again.
But they're often, at the beginning, plagued by worry. Worry about what if this comes back? What does this mean? Will I be one of the lucky ones? Will I not? And as their doctor, you're going through all of that with them. You feel ownership in this and you want it to go well for them. And a lot of it in your control, but ultimately, the true final outcome is not. So it's this whole sort of journey together with this person that you just met. And you’ve become these very important parts of each other's life.
And then you do it over and over and over again. Always say to the med students when I have them in my office, I would say, “We know we did our job,” when on their surveillance visit, I'm chit-chatting about what their kids are doing in school. My favorite thing to do is hear where you went on vacation, where you kids are going to school. Because it means we’re not talking about your cancer, because it’s not around. But there are cases where it does come back. And then we have to care for these women until they die, and their families.
Q: And you described at the very beginning that moment of meeting a woman for the first time when she's facing death or facing uncertainty. Have there been moments throughout your career where you have felt like you've been able to encounter that moment better and better? Or did that always come naturally for you?
A: I do think that there is an innate kindness and innate gentleness, actually, that many GYN oncologists have.
Frankly, it's the ability to engender in another human being that you're about to jump in the boat with them that's taking on water and you're going to help them bail it out. And you're not going to get out of boat until they do. And I truly believe most of that comes from how you were raised.
Like being brought up with this idea that you are there to help other people. That that’s our primary job in life, actually.
Q: You know, just when I think about these kinds of diagnoses, I mean cancer is hard enough, but then thinking about how that’s affecting such an intimate part of the body. Can you talk about what this care means, given the emotional attachment I imagine many of these women have with the parts of their bodies that are potentially being taken out or being affected?
A: Women have this very complex relationship to their gender, to their sexuality, to their reproductive organs. It’s legislated. Women's reproductive organs are, in large part, legislated by our Congress, our federal government.
Women experience differential treatment in their life because of that. And women also experience amazing things in their life because of their reproductive capabilities. And so you’re sort of dancing around the nidus of all of these things. And I think it can go many ways. If women are older and they’re post-menopausal, they may not care as much if you need to remove their uterus, cervix, Fallopian tubes and ovaries.
Although, I’ve had plenty women say, “I'm so sad to see my uterus go. My kids were in there. I'm kind of attached to it.” And I also say that we have been very comfortable all these years taking ovaries out of women. The ovaries do a ton of great stuff and they do it till you're about 65. The women you see at most in, are the young women. Women who desire to have biological children and have not done it yet.
And you were right, in that, to have a cancer diagnosis in that regard adds on this extra level of suffering for these women. Because not only is there mortality questions, this whole construct of who they were as a woman, what they thought they were going to do, how they thought their life would be also changes. And then finally, many of the treatments we do are very disfiguring and can impact sexuality.
I always say as a woman, I don't know a single woman who, at baseline, is happy with their body. And then, I'm going to do something to it irrevocably change it. It also has impact on couples and sexual function. And so to bring cancer into this construct of intimacy where you need to feel safe, is also incredibly heavy. And we have really poor resources to tackle that for women. And a lot of women will suffer for years after their cancer diagnosis.
Q: And can you talk a little bit more about the approach to care for younger women who are diagnosed with cancer? What can be done to help them still achieve that goal they might have of building a family?
A: So we have come a really long way for young women struggling with cancer. So the first thing I ask someone, well, it's not the first thing. But as we talk, there are a couple of pieces of information I'm going to get at. Number one, do they have the desire to have children?
“How many?” And I actually find that that's a really empowering question. Because women come in, they just think they're going to die. And so, to have their oncologist say, “Okay, you want to have kids? How many?” It immediately imparts that we’re thinking about, not just is it a possibility? But I'm going to try to strike that bargain where I actually get exactly what you want.
It's powerful. I get a sense of timing. I get a sense of if they’re partnered, if they're not, if they want to be. You don't need to be partnered to have a baby. And then what I always tell them is, “My number one job as your oncologist is to keep you alive until you're a hundred, if that's what you want.” My second job is to get everything you want with your life.
So I won't compromise number one for number two, but I will try to get you both.
But we also work really hard to, if they want that, to strike that balance for them. We've changed surgeries in many ways. We're always trying to get less radical and less morbid in surgery to allow that. So we really fight hard. And I do feel good that any young woman who comes here, who still desires to retain fertility but they have a GYN cancer, that if it can be saved, if it can be done for them, we will.
Q: And you’d mentioned something earlier, that we're very comfortable taking out ovaries. I wonder if you can talk a little bit more about that?
A: Yes. Well, this gets to the history of patriarchy and misogyny and medicine. So the most common operation in the United States for many years has been a hysterectomy. And when I was in medical school, there was this joke that that was the final phase of life after menopause and you get your uterus out. And it speaks to the fact that we're just super comfortable demonstrating ownership over this part of women's bodies.
And people have, historically, been incredibly cavalier about just taking out ovaries while you're there, which is crazy. And there's a lot of language in medical textbooks that says things like, ovarian removal when the woman is done with childbearing. Well, the ovaries do more things than just make babies. They also secrete estrogen, which is great for your heart and your bones and your brain. It's great for mood, sexual function, skin. And there's just been this paucity of, sort of, research on that.
And there's also this sort of cavalier attitude towards menopause. The way we talk about menopause is if it's no big deal. But if you were to hear, like, a man was castrated, like his testicles were just removed, all of a sudden he’s devoid of testosterone, people would act like it was a horror show. But it's just this level of comfort we have. I do think there's been a lot of research that’s shown the benefits of ovaries. But there's also been just a ton of more women going into the field.
And so, representation does matter. It does matter that in women's health, there are more women, And so I think we've gotten really much better as a field about trying to strike that balance between doing what is needed to be done to cure someone's cancer, but also leaving them with everything that they can keep.
Q: And do you find that women come in for their initial meeting with you, having preconceptions that you need to then tell them, no, there's another alternative way that we can manage this.
A: Actually, what I find is that we are remarkably poorly educated about our own reproductive anatomy. So people will think, if I'm taking out their uterus, that then they’ll go into menopause. Or if I'm taking out their uterus, that then they won't be able to have sex, or have an orgasm. There's just a variety of, sort of, misunderstandings about that. I also find that partners are really poorly educated.
I will always remember a woman I took care of, whose husband was a CEO, okay, of a very big company. And this woman needed to have debulking surgery, which is one of those huge surgeries we do for ovarian cancer. And she needed to have a colostomy, which is where a bag is placed on the abdomen, the intestines are brought up, the stool goes into that. And her husband said to me at the time.
“Well, how will she pee then?” And I looked at him and I was confused. I said, “No, no. It's not her bladder going to the skin, it’s her colon.” And then he was, like, “But it goes to the same place.” And I said, “No, it doesn’t.” I think we just don't treat women's reproductive anatomy like every other bit of anatomy.
It's not well taught. So mainly, I have to do a little bit of, high school PE education, as opposed to really any other misconceptions.
Q: It's interesting hearing an example of the partner’s role in this. And you’d said that these types of diseases and women that you work with, the whole family's involved.
A: That’s right.
Q: Can you talk more about your experiences, maybe with partners, maybe with family members, kind of supporting women through these diagnoses while you're working with them?
A: All women take care of other people. They are like the glue of the family. There was this great study that I learned when I did some medical work overseas in Bangladesh. It was a UNICEF study and it showed that when a woman dies who has young children, the odds of those of children reaching the age of 18 fall by half. And that speaks to how important and integral the world is of women within the fabric of the community and the broader society.
I've been blessed to see these amazing relationships with these amazingly strong partnerships where people cared for this woman until the end in this way that was heartbreakingly beautiful, honoring her wishes, doing everything she would have wanted.
And allowing her to die in a way that was commensurate with how she lived her life. I've also seen cases where all the woman wanted to do was go home and die. And home that at home, and the partner said, “I can't take care of her. I can't do that. We can't do that. I don't know how to do that.” And it's interesting, again, a field that's full mainly of women, a lot of the surgeons in GYN oncology, a little more than half, are women. Most of the nurses are women.
In those cases, with the husband when that happens, we’re like, “Oh yes, you will learn. She will go home. We are going to get this woman home and you’re going to do it, too. But most of the time what you encounter, Kelsey, is just tremendously sad people who are so sad because someone they love is suffering so much and they can't fix it. So you have to hold this place of compassion for them throughout the journey. And we also give huge leeway.
So people get mad at us. Some people lash out. Some people cry. Some people sort of go into their shells and they kind of can't meaningfully participate. And some people are just amazing. And I consider it like a great gift of my life that I got to know them and see them in such adverse circumstances.
In a visit when I'm meeting with a woman for the first time, I'm always watching who's with them, too. And if they're on the phone in this era of COVID. I try to listen to how they breathe on the phone. Like if I say something, do they take their breath in sharply? And then I can tell they haven't talked about this. And so, it's just kind of constantly trying to stay on your toes, to read who they are as human beings. And trying to, frankly, make the journey better for them.
Q: And you’d mentioned earlier, having a background in feminist philosophy, I believe you said?
A: That’s right.
Q: So we talked about how you chose this specialty. But do you feel that that background, that interest, influenced you to pick a specialty focused in women's healthcare from the get-go?
I think so. I mean, in retrospect, I've always been a girl's girl. I've always had lots of women girlfriends and ran around with a bunch of amazing women. And I sort of view, in simplistic terms, my job now is to keep as many women as healthy as possible and alive as possible to make the world a better place, period, full stop. So it's sort of in that continuation of that. I think I mentioned to you before, that when I started, I always thought I might be an OB-GYN.
I didn't know what a Gyn Onc was. But when, the initial first day I spent my GYN oncology rotation, I was sitting and chatting with this young mother of two. I knew she had ovarian cancer. I've never seen ovarian cancer, never touched it, didn’t know what it looked like. And I knew she was going for this surgery called the debulking. Which, as a third-year med student, I knew was a big surgery, but I didn’t know much else about it. And there was this woman talking to me about her kids in the pre-op area. And then we went to the O.R.
And then, when the GYN oncologist was taking care of her laid open her abdomen, just a volcano of tumors started pouring out. It was just choking every organ. And I remember taking my breath in and just thinking, oh my God, that was inside of this woman, like this amazing, very cool woman, just literally trying to kill her. And so, from the very beginning, the just injustice of that, the horror of that, like how much I wanted something better for that woman, immediately convinced me to do this field.
So yes, I guess I’ve always pulled into the stories and the lives of women, the validation of that. And I feel like what we do is the ultimate validation of someone's life. And that we, literally, go to the mat for these women to try to keep them alive and get what they want. Which is what, kind of, leads to the whole patient reported outcomes piece. What does she want for her life?
We will all ultimately die, every single person. You, me, everyone who’s ever lived will die. But what can we do to make this one go-around that she has what she wants. And for most of us, part of that in buying time. And the final thing I'll say is that in GYN oncology, a lot of the surgeries we do are some of the most impressive surgeries in all of medicine and surgery, period. They're famous for that. And it's just because more is better, it’s because, actually, weirdly they work.
Most people, once the cancer has spread to different organs in the abdomen, would say someone's unresectable, it’s just palliative care. Well, we go for it. On these huge eight-hour surgeries, the patient and I, like, kind of join hands and we go for it. So she goes to sleep and we go to work. And so we, sort of, from all of it, just the whole going back to that concept of intensity. We share in this intensity of experience because we want to validate their life. We want to keep them alive. We want to give them time for us to find a cure and for them to live the kind of life and do the things they wanted to do.
Q: I can feel the intensity. And in the midst of all this intensity, how do you find that you're able to find wellness for yourself? Especially remembering all of the patients that you've ever worked with, how do you, sort of, protect your own well-being while also caring for so many women?
A: The elusive wellness. I don't know if you heard me laugh. I don't know. Has anyone found wellness or balance? I think wellness is in the same bucket as balance, I'm not sure. I don't know, I don't know. Number one, I just kind of think I was born to do this. And so it's sort of easy to do, or it's easier, because I'm doing what I was called to do. I have an amazingly supportive family and husband and children and friends, who understand what I do and appreciate what I do, and they cut me slack.
If I'm late, if I mess up, if I missed a birthday, if I forget something, people in my life ubiquitously cut me slack. I think I view most of it candidly and it sounds a little hokey. It's hard, it’s exhausting, not every patient encounter is good. The ones that are bad are really bad. But it is this tremendous opportunity to be kind to people at a time when they really, really need it. And they don't know that I'm going to be kind. I can be some jerk surgeon who’s going to be mean to them.
And that's enormously rewarding. And it's a tremendous opportunity to see beauty and to see people in a way that when everything is stripped aside, what really matters to them. And actually, in turn, that piece is invigorating. Because when you're an oncologist that deals with really serious cancers, I don't sweat the small stuff. Now this one, it drives my husband crazy, because we need, maybe some paperwork needs to get done. Or my car needs to get the oil changed and I’m like 10,000 miles over.
But I'm just like, who cares? It doesn't matter. No one's dying. In the end of my life, it is not going to matter one iota whether I got that done. And so, it's really perspective granting. So I think that, because of the perspective the job grants, that's really helpful from a wellness perspective, in that I have stopped worrying about things that don't really matter. I mean, I truly could care less.
Q: So you talked a lot about taking into consideration what the patient wants. What she wants for her life, what her goals are from her care. And I know that that feeds into the work that you do at the PROMS program. I'm wondering if you can talk a little bit about what PROMS are and what the program is at Mass General Brigham?
A: So Patient Reported Outcome Measures are a way measuring the quality of care that we provide, the appropriateness of care that we provide, and whether it was the thing to do. Historically, medicine has always measured things that we can, which are 30-day mortality rates or did the patient die within 30 days of their surgery? Infection rates, re-admission rates, unplanned admission to the intensive care unit.
And the thing is, patients don't care about that stuff. People care if they die, of course, but I have never had a patient say to me, “Ugh, Doctor Sisodia, thank God I didn't have an unplanned admission to the ICU. No one cares about that, no one cares. What people say to me in the office is, “Doctor Sisodia, when will I be able to go back to work?”
“When will I be able to get on the floor and play with my grandkids? Am I going to look different? Will I be able to drive? Will I be able to have sex?” These are the things that people care about. And it's shocking to everyone, but we’ve historically never measured that. When I told my father what I did, you know, when I started taking on single patient reported outcomes, we checked to see if what patients want, if we're actually hitting the mark on that.
And he said, “Don’t you guys check that?” And I said, “Dad, no we don’t, shockingly.” So what patient reported outcomes are, is they're unique for each disease or condition. They’re questionnaires that were validated in patients undergoing that disease. And then, in small pilot groups and then taken generally in our additional testing, to see, do these questionnaires ask the questions about symptoms or problems associated with this disease? And we track these over time. So an example would be, take this woman we’ve been talking about in this, that has ovarian cancer.
She comes in, we ask questions about if you're having belly pain? If you’re able to work? What's their quality of life? And then we ask those again after the surgery. And we see, with my surgery, did I hurt her? Or is she still sort of the same? And then we check it again, when they’re going through chemo. And we say, are we hurting them? Now, she can tell us how she’s functioning in her life. How’s her quality of life? Is she enjoying her life?
And so we can use these things to follow patients over time and see, A, are we doing a good job? B, are we saving years on people’s lives, at the expense of them not wanting to live it? Most of us wouldn’t want five extra years if we were miserable. And I always say, it doesn't matter if the operation was a success, if the patient, it doesn't feel like they're better off for us doing it.
We should not be in the business of doing things that technically are successes, that people don't feel like their lives are better off because we touched them. So PRO’s are sort of how we get at that, actually. I now oversee the program from Mass General Brigham. It’s the world’s largest program, by orders of magnitude.
Q: And you were part of the team that built a program, is that correct?
A: That's right.
Q: What was that experience like, building it from the ground up?
A: I was just discussing this with someone earlier today and I said, “Yes, I definitely cried in the shower at least five to six times in the beginning, because I just didn't know where I was going to start.” So in the beginning, there's a lot of salesmanship, like, this is why you should care about this. Because doctors aren't used to this, this is relatively new.
And then after the salesmanship phase, there was the infrastructure phase. And I cannot even tell you all the things that went wrong with the data, the EHR. So I spent 2018 and 2019 literally, brick by brick, replacing the infrastructure under the hood on this program that allows us to generate these big data insights.
And then we finally just reached that point where we could take that and use it and then the pandemic it. And during the pandemic, you know, generally patient report outcomes are filled out on iPads in the clinic. And so during the pandemic, we brought up every single one of our iPads that’s been in the ICU’s to help patients do end-of-life visits with their family who couldn't be there. So essentially overnight, literally, my program totally ground to a halt that we'd spent five years building. We got the tablets back at the end of the year. And now, we're just rebuilding again.
Q: So when facing those things going wrong, especially in the beginning, what was your response to that?
A: Well, we’ve got to fix it. So who I am as a doctor very much informs who I am as a hospital administrator. And in the O.R., no one is coming to help, you’re it. You’re the only person who’s going to get this cancer out. It is what it is.
And so, I sort of take that approach to everything, where I bit it off. I decided I was going to take this on, so I’m going to deliver. The end, and then we just get there. And on top of that, I have this amazing team that I work with for PRO’s. Obviously, I'm not a one-woman island. The people you're not seeing or interviewing today is this amazing cohort of people who also do what needs to be done. And I always find, if you treat the people you work with like family, you’re loyal, you would do anything for them, they’ll do the same for you. And so together, we sort of got everything where we needed to be. And there hasn't been much we can't get through that way.
Q: Can you talk a little bit about the sales piece of this? You'd mentioned that this isn't something, historically, a lot of clinicians have looked at. This must have been new knowledge for them when you were bringing it to them. What were those conversations like?
A: So what I will say, the beauty of practicing at Mass General is twofold. People will always do what's right for the patient.
So I had both of those things going for me. The weaknesses were, we had to do it through the electronic health record, which everybody hates. It's kind of one more thing. You've got people that are already just being choked by all the paperwork in medicine .
And dealing more with EHR, how can I sweeten this deal? I know you're willing to give me a shot, because it's what's right for patients. But I've got a lot of detractors in my column, so what can I give you that will put you over the top and make it worthwhile? And for us, the answer to that is largely data. We give you back your data. You can actually see, you think you're the best shoulder surgeon in the enterprise? All right, I'll see what your patients say and I'll put it up against your partners.
And so, that's sort of how we continue to move people along in the early years. Now, there’s been this sort of preponderance of data people publish and they see it's associated with better care. So now it's easier to bring people on board.
Q: And your dad's reaction, just surprised at how this hadn't been implemented before. Can you talk a little bit about the disconnect of why this hasn't been looked at before?
A: So the easiest answer, Kelsey, is that we couldn't look at it. Historically, these questionnaires are like 30 questions long. We didn't have electronic health records. A medical record was paper. One of the critical pieces was the technology had to be there to measure it robustly.
The second piece is people are afraid of what patients are going to say.
Doctors are highly critical of themselves. And all they can remember is that case that didn't go well, that patient who was unhappy. And so when you go to them and say “Hey, I'm going to ask the patients, in their own words, to describe what their care experience was like with you?” Immediately, people get nervous. It invokes, even in physicians, that imposter syndrome.
And one of the most powerful pieces of what I do is that, almost ubiquitously, people are better off because we touched their lives. I am telling you Kelsey, we have collected 10 million patient reported outcomes. We collect in 200 clinics, 60-plus specialties. I have yet to see a physician, a hospital, a surgery, an anything, where the people are worse off because we intervened in their life.
Q: And so, I know this is still in somewhat of the early stages, but have you seen any changes in your work because of the data collected?
A: Oh yes, it’s a great question. If people listening to me today take anything from this, I would say, a lot of the counseling that we get patients about what to expect is wrong. Most of what we know and tell patients comes from randomized clinical trials, where I would say to you, “Kelsey, in this trial with 5,000 women with ovarian cancer, they said that six months after you're done with chemo, you go back to normal.”
And that was the quality of life data in that study. Now, the devil's in the details on that. Because the women that were in this study were affluent. They were primarily white and they had enough financial resources, just resources globally, to be involved in a trial. So a trial patient does not look like your everyday clinic patient.
So a very classic example, is most of the trial literature has said that historically about women with ovarian cancer. The quality of life reports will be the same, everything will be the same. Our data, at Mass General, shows that is not the case.
So when I started this before I started collecting PRO’s, I would say to women that line, “Six months later, you’ll be back to normal.” It's not true. It’s just not true, not for every woman. So now I say, “We used to think you'd be better in six months,” but still, what we kind of say, “But the data here actually shows it's more like nine to 12.” So when you're well intended friends say to you, “It's been five months. It's been six months. It's been seven months since chemo. Come on, go out with us. Let's go have some fun” and you don't feel up to it, you’re normal. You’re normal.
I also check on women's social support now. So we know that there are certain ethnic groups, certain socioeconomic groups, that literally don't have anyone who can take them to the doctor. So how are you going to get through a huge cancer surgery if, when you're recovering, there's no one who can fill your prescriptions, no one who can get you to the doctor. You're taking care of two little kids, you're a single mom.
And so, one of the tools we use is called instrumental support and we do it pre-op. And you can see, like, if a woman needs to have a surgery and she has literally no support, like there's no one to do these things for her, from that very moment I plug her into social work. And try to get her additional resources to get through this cancer journey. So it's really impacted what I do in a lot of ways.
Q: And how has been the past year, where maybe resources are clearly more limited for a lot of people, knowing this data, having this new approach. How has that sort of intersected with COVID.
A: PRO’s have made me humble. They made me understand that the way we understand the disease is not the way the patient's experience it. So I try to approach all my patient encounters with humility. And then when COVID happened, I realized we didn't have a questionnaire for that.
And I had one patient who actually died last month, which we were fighting like hell to keep her alive. And the reason why was, she said to me, “I just don't want to during COVID.” She said, “Nobody can come. It will be like--” She said, “I never thought this would matter to me, but I actually want everybody to show up and have a big party. I don't want it to be like my life was just like a footnote, like a candle that snuffed out and just ended. That no one could celebrate it.”
She should terrible cancer. I cannot tell you what we did to try to get that woman to live through. And then when she said to me, “I know I’m going to die. Can you just get me through the pandemic so I can have more than five people at my funeral.” And we still couldn’t do that.
It's this whole other thing of what people are doubly going through, the double insult of cancer and COVID. So I guess I would just say, I don’t have any data insights from the PRO program for COVID, outside of the fact that what was already an incredibly complicated experience has now reached levels of complexity that we can’t even fathom for our patients and sadness and loneliness. It’s just really hard.
Q: I’m just hearing that story of kind of helping that woman pull through her death. And you mentioned in the beginning that that's a part of your job. What have you taken away from those experiences?
A: I consider it one of the greatest honors of my life, that I have been able to watch multiple women who I know deeply and I know their families and I care about these women, to watch them die. Most of us will never see anyone die.
So we actually, interestingly, I think a lot of life, of all the things you do you look for models. You look for people to teach you how to get through it. And we don't get to watch people die in a way to emulate.
Most of us will never experience that. And we're so afraid. We spend our life so afraid of dying. And I’ve had the privilege of helping hundreds of women die. And it's given me this amazing gift of seeing how to do it well and kind of thinking, when my time comes, the way I would want it done.
Q: Thank you for sharing that.
Q: And I wanted to circle back to something you said in the beginning, which is, that the field that you're in is becoming more and more led by women. Can you talk a little bit about your work as a mentor and a leader in the field, kind of, making a more welcoming environment for women?
A: So for women in surgery, the first thing I do is, I try to be extremely welcoming, nice and normal to other women. And I will normalize things that I wish someone would have said to me. There is nothing in the O.R. that is intuitive and everyone feels stupid. Like everyone just feels stupid. You're just trying to not contaminate the whole tray and get thrown out.
So generally, I’ll just be, like “Hey, nothing in here is intuitive. Just don't touch anything until you get the wavelength and we are, we're going to get you through it.” And then, I sort of try the whole time to bring an energy of someone who's like approachable and kind of normal. And I know that 90 percent of those women in my O.R. that’s training have imposter syndrome. I know they feel like they could never do this. It’s not like girls are brought up, for the most part, at least the women who are in med school now, that generation, where people told them they could.
Some girls they did, not all. And so, I just try to normalize the fact that, yes, you can be a woman. We listen to whatever music we want. We talk about whatever we want. We make jokes that we probably wouldn't make otherwise. We will talk about eyeliner, if we want to. If we don’t want to, we won’t. We'll talk politics. We’ll talk very progressive politics. So there’s just like taking the stigma and the scare out of the O.R. I also talk very openly about institutional power. I'm not apologizing.
One of the things I'm famous for as a surgical teacher is, you will immediately see women in the O.R. who just apologize, even if it's not their fault. Like, say something starts bleeding, my resident assistant will just go, “Oh, I'm so sorry. I’m so sorry,” like she caused it. She didn't give that woman the cancer. She didn’t cause the bleeding. It's just, women apologize. And what I always say is, “Stop saying you're sorry. This is not your fault. You didn't do anything wrong. Even if you do make a mistake, don’t say you're sorry. Just say, ‘Okay, my battle.’ Or, ‘Okay, I’ll do it again.’”
It's this extension of apologizing for your existence of women that women are conditioned to do. Like, stop it, it stops today. You're going to assert your power in this room. So that's one thing I really push in the O.R. and even outside of that. In my administrative life, I take a very strategic approach. I try to hire women. I try to promote women that I like. I don't care if they have a background in administration. Generally, I just hire good doctors who treat people right. In meetings, if a woman says something, I try to augment what she said and say, “Oh listen to Emily said. That was such a good point.”
I try to find information with other women. It is extremely strategic. We try to, often times before a meeting, we will all pre-game and decide what we want the outcome to be. And then steer it that way. And I think it's important to make those conscious choices to promote other women, because the inertia is that they won't be promoted. So I have zero qualms about being very overt and very transparent about my desire to promote women into leadership positions.
And the final thing I'll say is, that you need to have women at the table, because if you don’t, they’re views aren’t going to be represented. My mother has done a lot of amazing things in her life But what she said to me one time, she said, “You watch. Women in meetings have this tendency to not sit at the table.” They’ll sit at the chairs on the side of the room or around the table. And she just looked at me and she said, “If you're not at the table, you are on the menu. Every woman you see needs to be seated at that table. Whether they feel like they're a fraud or not, sit there.” And so it's those things that I try to impart, you know? And I work very hard to do that and I very consciously do that on my team.
Q: Rachel, thank you so much. This has been really wonderful and I really appreciate everything you shared.
Q: And lastly, I just have my final five questions. What’s the best advice I’ve ever gotten?
A: Oh my God, Kelsey, best advice I've ever gotten? One of my surgical mentors said, he was kind of tough and so in the O.R., he would leave the trainee to do it by themselves. And as a trainee, you’re woefully inadequate to do whatever this surgery would be, which is why we don't let them do it by themselves now. And he would make you page him and over and over and over to come back.
When he came back the very first day I worked with him, after a humiliating me in the O.R., he said, “Do you know what today was about?” I had to page him like 20 times to come help me take out a spleen. This was my first day as an oncology fellow. And I said, “Nope.” And he said, “No one is coming to help you. Anything you start, you have to finish.”
And it was about surgery and it was sort of harsh, but I take that to everything. If I bite something off, if I have to at the end. If have to carry it over the finish line by myself, I’m responsible for it.
Q: If you weren't a doctor, what would you be?
A: If I wasn't a doctor I would be a clothing designer. I love fashion. I loved it my whole life. I love to dress up.
Q: What's the best decision you've ever made?
A: I made a choice to become a mother, and I would say that was the best choice I ever made. Very candidly, I spent my whole life wanting to be a surgeon and doing what I'm doing. I never thought about being a mother, period.
And then, as I got older, I started to think, well, if I don't do it I might regret it. But it wasn't like I felt called to be a mother. And then once my kids were born, all I could think was, like this lifetime of blessings, this is the most amazing thing I've ever encountered in my life.
Q: Do you have any guilty pleasures?
A: So being from Kentucky, I’m a big fan of bourbon. I have such a sweet tooth. Every day around 3:00 p.m., I start trolling the halls, looking for some leftover candy or donuts.
Q: Last, what do you consider your superpower to be?
Q: Great. Rachel, thank you again so much. It's been so much fun talking to you.
A: Yes, it’s been really fun talking to you, too, Kelsey. Thanks for having me.
END OF INTERVIEW
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