After 'When Breath Becomes Air'
The 2018 Bice Lecture and UVA Medical Center Hour
After When Breath Becomes Air: A lecture by Lucy Kalanithi, MD
Monday. Nov. 12, 2018
Pinn Hall Auditorium
Lucy Kalanithi is a physician, professor, and the widow of the late Paul Kalanithi, author of the New York Times bestselling memoir, When Breath Becomes Air, for which she wrote the epilogue.
A practicing physician and a faculty member at the Stanford School of Medicine, Kalanithi earned her medical degree at Yale, did her residency at UCSF, and completed a post-doctoral fellowship at Stanford’s Clinical Excellence Research Center.
At the cross-section of her career as a physician is her profound personal experience of standing alongside her husband during his life, through his diagnosis with terminal cancer, his subsequent 22-month treatment, and, ultimately, at his death. This year’s Zula Mae Baber Bice Lecture, Dr. Kalanithi has a special interest in medicine’s meaning, in patient-centered care, and in end-of-life issues.
A question and answer period follows Dr. Kalanithi’s talk, which is also the UVA Medical Center Hour, and a booksigning will follow her talk. This event - which takes place in Pinn Hall Auditorium, at UVA Medical Center - is free and open to the public.
MARCIA DAY CHILDRESS: Welcome to the medical center hour for today. I'm Marcia Day Childress from the Center for Biomedical Ethics and Humanities. I'm delighted to welcome all of you here in this room and other rooms. This may be a little inconvenient for many of you. But from our standpoint, this is a problem to have, that we have brought someone here today with a message and an opportunity to share with all of us.
And it's gratifying to see how many people have turned out for what is also an important interprofessional opportunity. We are happily sharing this medical center hour with the School of Nursing on the occasion of their annual Bice Memorial Lecture. It's my pleasure to be partnering with the nursing school on this program that has at its heart the compassionate heart of both the nursing and medical professions.
And it's my pleasure to introduce to you Dorrie Fontaine, the Sadie Heath Cabaniss Professor and Dean of Nursing. Dean Fontaine will say a few words about the Bice lecture and then introduce our guest speaker and our program moderator, whose conversation we will share in for this hour.
Here I must quickly attend to some business and say that neither speaker had any conflicts of interest to declare regarding health care goods and services. We also wouldn't be having this program, of course, had young neurosurgeon Paul Kalanithi not written his remarkable, lucid, and beautiful memoir when Breath Becomes Air, which was published in 2016 after his death.
This is just to let you know that the UVA bookstore is here outside the upstairs entrance with copies of When Breath Becomes Air. There will be a book signing immediately following the program during the reception, which is also in the upstairs lobby. So yes, there is a reception. And yes, you're all most welcome. Dorrie Fontaine--
DORRIE FONTAINE: Thank you. So thank you, Marcia. My partner in crime here bringing you this extraordinary program today. I'm so happy to see everybody.
I would like to just share with you that the lecture is named for a beloved former UVA nursing dean, 40 or more years ago, Zula Mae Baber Bice. And she passed away of breast cancer. And her husband professor Raymond Bice, who taught here for years, endowed this lectureship in her honor.
So each year the Bice provides a platform for inspiring thought leaders to speak about important issues that really matter to nursing and medicine. And I think clearly they matter to all of you that are here today. Today's topic stretches beyond the borders of nursing and medicine, even transcending health care.
The stories we'll hear are for every human everywhere. So I'd like to introduce to you our moderator for today. Before I introduce Dr. Lucy Kalaniti, I asked Dr. Ken White, who's our associate dean for Strategic Partnerships and Innovation, to moderate today's panel because he practices and teaches palliative care and end-of-life care and because he has a compelling vision for how we ought to be treating those who are facing life limiting illness. He is an acute care nurse practitioner.
Every Tuesday he's over there with Dr. Tim Short and our wonderful team offering his expertise. I love listening to his stories at the end of the day. No HIPAA violations, but he does share on Tuesday night with me all the wonderful people that he's taken care of.
So thank you, Ken, for doing this. So now I'd like to introduce Dr. Lucy Kalanithi. But it seems to me that hundreds of you already know her, which is nice.
She is a physician, a professor, a writer, and speaker, a mother, and a widow. She was married for nine years to Dr. Paul Kalanithi, a young neurosurgeon diagnosed with lung cancer-- an illness that would claim his life in 2015. He wrote his book while he struggled and suffered and loved. And it really seems to be a bit of a love story and all about courage as well.
So the Kalanithi's didn't ask for this work. It was thrust upon them by odds in a chaotic universe. But their perspectives teach us that in the face of change and uncertainty and even death, there is, too, a profound meaning, a profound ability to discover what truly matters.
She attended Yale School of Medicine, did a residency training at UCSF, where we actually were there together but we didn't know each other. She completed a postdoc at Stanford's Clinical Excellence Research Center. And today she teaches medicine at Stanford Medical School.
She's a fellow of the American College of Physicians and on its board and has received many honors about patient centered and oncology care. So it's my pleasure to welcome you both here today. And we are going to see a short two minute video. And then we're going to have the moderated discussion. Thank you again for being here.
KENNETH WHITE: Wow. Wow. That's such a powerful video with a strong message that resonates deeply, especially to this audience of interprofessional clinicians. And our students are learners.
If only we could all learn to make the most of our time and live every day to the fullest of the moment just as Paul did. I'm struck by all the beautiful video footage and photography about your journey together. How was it that you had the forethought to gather such incredible footage, which now 2 and 1/2, 3 years on must be a great comfort in your grief? I feel a man reaching for my coat.
I thought it was on. I'm sorry. How is it that you were able to put together this great footage as a forethought for this incredible journey? And what a wonderful gift to your daughter Cady. How does that comfort her and you at this point?
LUCY KALANITHI: The video for this sort of just came out of luck because Paul had done a little bit of writing and wrote a couple of essays that sort of went viral during the time of his illness. And Stanford made this video. And I feel really lucky for it because they actually did like an hour long interview with Paul. And some of it is excerpted there. And I think Cady could watch it later.
And I had a sense at the time-- he had terminal cancer-- I had a sense like, oh, I'm really happy this video is getting done. And the videographer missed his own Thanksgiving to come to our Thanksgiving, the last Thanksgiving that Paul was there for. But just kind of like a lot of things. I think it was sort of luck and the goodness of other people sort of paying attention, which is sort of how the book came about, too. And yeah, I was lucky.
And Cady is now four, our daughter. She was eight months old when Paul died. So she won't have her own memory of Paul.
And he didn't write her a series of other letters or anything else. Like the book that he wrote was a letter to her, too. And so I think a lot about how to help her develop a relationship with Paul or the idea of Paul she's sort of growing up into that. So this will be part of it.
KENNETH WHITE: What a beautiful gift to her and to all of your family. In the prologue to the book, When Breath Becomes Air, Paul describes the transformation from doctor to patient. I call him Paul because I read the book now three times, and he feels like a friend. He had to put on a hospital gown, and he had to go from being a neurosurgeon to lying down in the same room where he had treated hundreds of patients. Tell us about the day of his diagnosis and what that was like.
LUCY KALANITHI: Sure. So as some of you know, Paul was a chief resident in neurosurgery at Stanford when he started to develop some ominous symptoms and over the course of a few months lost about 15 pounds and developed really severe back pain and then ultimately a cough. But he had lost 15 pounds as an intern. I gained 15 pounds as an intern.
He had lost 15 pounds. So for a while we sort of were like, you're standing the OR for 14 hours a day. Maybe your back pains from that.
And ultimately, sort of sought a workup slowly but surely, and then had a chest X-ray that showed nodules throughout the X-ray. And I remember that day we were like, maybe it's disseminated tuberculosis. Like wouldn't that be so great? You're having a bad day when you're thinking that.
And packed up to go to the hospital for expedited workup. And we both sort of had this sense that this is probably really bad news. This is probably metastatic cancer. And we didn't know what kind.
And one interesting thing that happened that day was as we were packing to go to the hospital, I was packing like phone charges, and the insurance card, and socks, and just like what you would need to be comfortable in the hospital-- a pillow, or a blanket. And Paul actually packed a stack of books. He packed Being In Time by Heidegger, Mere Christianity by CS Lewis, and a novel called Cancer Ward by the Russian author Solzhenitsyn. And that was really interesting.
I don't even think he opened them while he was in the hospital. But he sort of had this little stack of books there. And I think it was an early acknowledgment that it wasn't medical knowledge necessarily that would help him most through that time. And meanwhile, he hadn't really read a good book in like seven years because he's a neurosurgery resident. He read surgical atlases and textbooks. But that was a really interesting thing to notice.
And then he writes in the book, I put on the hospital gown. I lay down in the patient bed. And the future I had imagined evaporated. And I think that was one of the most interesting or striking things about that day that I think coming face-to-face with your own mortality is maybe the biggest challenge that we all face.
But at the same time, I hadn't quite realized how much a serious illness in a moment can shift your identity or take away your identity. I think I sort of came to realize how much of our identities are tied up in our future selves and who we imagine that we're becoming, whether it's seeking an education, or having a child, or all the different things that we strive for. I think when that is erased, in a way a part of you is erased, and you have to rebuild yourself. And so that was what a lot of Paul's writing was about. But it was really striking.
And then Paul writes in the book, too, about how we were both in his hospital bed on that day like trying to get our heads around what happened and sort of-- and he said, I just want you to know I want you to get remarried after I die, within an hour of being diagnosed. And I-- it was so striking it was sort of like that's not what you want to hear from your spouse at all.
But at the same time, it was this really nice acknowledgment of like I'm thinking about how this is going to affect you. And I'm willing to say out loud what's probably going to happen. And I just-- it really sort of set the tone for our communication during that time.
And then I also just think it's like such a nice version of love, like to love somebody independent of you and even thinking about them in a world where you won't even be and still loving them through that. It's just a really-- I think about that a lot. Yeah, but it was so intense.
KENNETH WHITE: From the video and from the story you just told and from the book, it sounds like you were surrounded by love in lots of ways. And I didn't know about the stack of books. But that's a perfect segue way to my next question.
Paul had-- if you've read the book, and I suspect most of you have. He had a baccalaureate and master's degrees in English literature from Stanford. You commented in the epilogue that Paul had e-mailed a friend to tell him he had been diagnosed with terminal cancer.
He said to the friend, "the good news is I've already outlived two Brontes, Keats and Stephen Crane. The bad news is that I haven't written anything. Writing this book brought much joy to Paul.
"The book is so beautifully written, and it flows in a way that I couldn't wait to savor the next word. It also references great lessons he had learned from his favorite writers." So here's my question. Was Paul a neurosurgeon who became a writer, or a writer who became a neurosurgeon? And how did that transition come about, and how did he conceive of the relationship between literature, the humanities, and medicine?
LUCY KALANITHI: Yeah, so I would say a writer who became a neurosurgeon. And that's interesting, right, that like when he gets diagnosed with cancer, one of the great losses is that he hasn't written anything because that was sort of a distant dream of his. And initially, he had never thought he'd become a doctor. He studied history and philosophy of science and medicine and English literature, and was very interested in thinking about meaning and identity.
He was really fascinated by the brain as an organ and thinking about mind-brain connection and then sort of mortality as a interesting intellectual and philosophical thing to get your head around. And then ultimately, realized that he sort of wanted to be on the front lines of seeing real people, including himself, grapple with certainly bioethical questions. But just sort of big questions about what does it mean to be human, and what does it mean to suffer?
And he was really interested in what it means to live inside a fragile, mortal body and how you make sense of your relationships with the world through your body and your own fragility. And I think he really felt like all of these academic and intellectual domains, literature and philosophy, and the humanities, and medicine, all were sort of ways to seek the question of what does it mean to be a human being and live a meaningful life?
And I think that's true. I think for all of us, whether or not we're schooled in the humanities, et cetera, I think we all certainly come across bioethics when we're in our work and come up against a question like whether to withdraw life support on a patient that we're treating or the many questions that we come up against every day. So anyway I think that's where he was trying to enter in why he became a physician.
When we first got engaged, he was going to be a psychiatrist and then was one of those people who falls in love with the OR. And I was like you're going to be a what?
I was like really? Because here was this calm, funny, guy, and I was like, wow. And then ultimately, he had to face some of these big questions himself, especially mortality earlier than expected. But I think a writer who became neurosurgeon.
And then it was after he died, I was-- you get to choose the writing that you put on somebody's headstone. And it says Paul Kalanithi, neurosurgeon and writer. And it felt a little gutsy to put writer actually because he had this book that he had written. And I was working with the editor on the manuscript, but it hadn't been published yet.
And now I think of Cady will look back and see, like, my dad was a writer, like maybe even foremost. So that's sort of interesting, and it felt-- I was like, I'm going to put writer. It doesn't matter what happened with his book. Like that's what he was. But anyway, yeah--
KENNETH WHITE: We're also many things other than physician, nurse, social worker. And I think that's an important distinction that we are so much more than what we do in our professional world.
LUCY KALANITHI: Sure.
KENNETH WHITE: What were some of your most important insights when Paul was a patient through the eyes of a patient? As we go through our training to take care of our patients, we don't generally experience the role of a patient until we're much older if we do at that point. So how did Paul's experience as a patient change your perspective about caring for patients?
LUCY KALANITHI: Yeah, in some ways it really did. And in some ways, it didn't, or deepened things that I had hoped for already. I guess I have a couple of answers to this question.
There is one moment that really stands out to me actually as like a moment of internal conflict for me where for people, who have read the book, there was a time where Paul was hospitalized with complications of chemo. And the admitting resident left one of his oral chemotherapy medications off the inpatient Med list because his LFT's were elevated. And Paul sort of got in this discussion with him and said, it's been like that for months.
And I actually get really bad bony pain when I'm in withdrawal if I skip doses of this medication. So please, can you keep it going? And it was this really spiky interaction. Because ultimately, the resident said, if you weren't you, I'd make you prove that you had all this pain.
I was like, whoa. And now looking back, I think about this poor guy who probably himself was like burned out and having a really hard time maybe. And now it's like immortalized in the pages of this book as having been in this-- and it's like I've probably been that resident, too, maybe. And so the medication ended up going on the med list the next day, but not overnight.
And I actually had it in my purse in this little prescription bottle that we carried around that also had like Naproxen, and Valium, and opioid. And we were like, this is probably worth, like, $200 if you're going to sell it.
KENNETH WHITE: Or more.
LUCY KALANITHI: We called it the fun kit. But it's like we were like managing his medications all the time and like talking about how to time the Zofran doses. It was a lot of medication management that we were both kind of doing. And I had it in my purse.
And so he ended up taking it out of my purse, which he doesn't write in the book actually. I don't know why. But he ended up taking it.
And at the moment I was like, this is actually-- if I were the inpatient team student or resident, or attending, I'd be like, this is a patient safety issue. This patient took his home Med out of his wife's purse. And this is not how it's done.
And I would-- I might even feel like personally affronted or something. But on the other side, I was like, you know what? When you're the patient and family, it's like it's your body. And you are doing what you need to do in accordance with what you feel like makes sense for you and your own understanding of the risks of benefits.
And I just remember thinking like of my own hubris in that situation and like really-- I don't know. I've thought about that moment a lot. And I think I used to think I'm doing a really great job including the patient in the plan of care.
And now I'm like oh, the patient is the plan of care. I'm the one who's like hopefully being included in that. And so that was a really sort of pivotal moment for me. And then I think about family caregivers a lot of course.
I walk into the patient's room now, and I see that other family members sitting there who often is a spouse or an adult child. And there's 40 million of those people who are taking care of somebody in their family. And they say the best long term care insurance in America is a conscientious adult daughter.
which is true. And my aunt Candy is here, and I'm like she has two of those. And I think also as far as like caregiver and family leave policy, the best family leave policy is a really nice boss who is willing to break the rules. And I think-- so I think about that a lot. And for our family, my boss let me do my postdoc work at home.
And Paul's boss, the GME at Stanford, kept him on the health insurance roll even when he became disabled. And we had so much luck in terms of supportive systems like that. So I think a lot about policy for supporting family caregivers and the National Alliance on caregiving or the Patient and Family Partnership organizations and all that kind of stuff. So there's that too. I guess I could tell a lot of stories.
But the one other thing I'll say is whenever I'm seeing a patient, I have always tried to do this. But I think right now I see patients in urgent care. And I always sort of think about what is the patient hoping for and fearing even in something as simple as you come in and you have an upper respiratory infection and you're convinced that you need a Z-Pak.
And that's like the classic one of the frustrating dilemmas in outpatient urgent care. It's like not every-- most people don't need a Z-Pak. Many people think they do. And now I'm like, what is it that you're hoping for with the antibiotic?
And often it's I'm giving a presentation at work tomorrow. And I really have to be on my game, or my sister had terrible pneumonia and nobody caught it. And now I'm really scared that that's me, or I'm going on an airplane, or just whatever. And I think oftentimes it's like oh, there's many ways we can actually attack that. And the antibiotic isn't the way to do it.
So let's talk about that. And so I think my practice has been influenced a lot. And my own empathy and connection to patients depending on who it is is deeper or different. And then in some ways, it's not. It's like I think-- I don't think you have to be a patient to be able to develop deep empathy and compassion, or at the very least skills that you can use every time to connect to people.
KENNETH WHITE: It strikes me that you described this individual compassion that you have now. Maybe you had it before. But you have it now in a different way.
But you also mentioned organizational compassion or institutional compassion, the leaves where they sort of stretched the rules a little bit. And that's a growing concern and something we hear under Dean Fontaine's leadership are spending a lot of time on. And that's a nice segue to my next question.
Your husband talked about the pain of failure that he felt for his patients and about one of his dear friends, a surgeon who died of suicide. Tell us about the experience of being a physician and the risks of clinician burnout? And a follow up, have you thought of any solutions?
LUCY KALANITHI: I have a lot to say about this. I'm really interested in burnout because I think it's one of the places where the business case for improvement meets the moral case and because there literally is a business case for reducing clinician burnout. And it's a cause of lower patient satisfaction and quality and safety. And I think we should study it and report it just like any other cause of deficit in our care.
And so there has been studies that show that medical students start out with higher resilience and quality of life than their peers, age-matched peers. And it takes so much to get to medical school and get to the health professions. And I guess I think sort of burnout comes from two different places, right?
There's personal resilience, and then there's system factors. And I think the system factors are really big and important. Some of that is cultural.
There was just a surgical resident, who wrote an essay in the New England Journal. I just tweeted it if you want to read it. It's really good. And it's talking about the physical arduousness of medical training and how a resident at one point says, it's OK to take a day off if, when you come back, you can tell me what the ventilator settings were on you.
It's like well, that's like, you know, it's like really intense. And I think when burnout has been studied, the system factors that matter are things like loss of autonomy and flexibility or unrealistic workload, or lack of meaningful tasks, or professional connection and social support. And I think the solutions also come out of that. And I think studying burnout, naming it, measuring it, and then adapting local solutions that have more autonomy in flexibility for clinicians and realistic workload, and all those kinds of things, really matter.
And I think over the past 10 years or 15 years or however long, burnout has become a thing that we're recognizing. And I think initially it was really focused on professional wellness and resilience. And I heard this great phrase and someone talking about burnout, which was if there's a canary in the coal mine, you can just teach the canary to meditate.
And I think that's really important that the-- if you feel burned out, or anxious, or depressed, it's not that there's something wrong with you. You may be a very well-adjusted human being reacting perfectly logically to a really intense system that's not built very well for human beings always. So and I had an episode of depression in residency that taught me a lot and actually some of the coping skills I brought out of that helped me during Paul's illness in ways that I wouldn't have expected.
But if you had told me 10 years ago that I would be at UVA giving an important lecture saying that I had a episode of depression, I would never believe it. So I think just talking about this up here is new and different for you to be asking about it and for your leadership on it. So anyway-- and I think the fact that the WAMC, which oversees medical schools and other training programs, recognizing it is a big deal.
Yeah, so I really care about burnout a lot and have experienced it. And Paul obviously experienced it. So yeah, I think that the main thing to think about, to recognize it as a system issue, both in scope and in contributing factors is important.
KENNETH WHITE: Thanks for your vulnerability and authenticity in saying that. In talking with patients, our patients, your patients, all of our patients, how do you balance honesty and hope? That comes up quite often. Were there good role models for how Paul's physicians handled this, or could it have been done better?
LUCY KALANITHI: Yeah, so for people who've read the book, you can see that Paul's oncologist essentially refused to talk about prognosis, which I actually thought was kind of crazy at the time. And she actually did at two different points. But he also didn't write about it.
One was with family members all along to get everybody on the same page that it wasn't a curable illness as things stand now. And then also at the very end when Paul had brain mets and leptomeningeal disease. She was really straight forward in seeing even if we can treat this, you probably have a few weeks to a few months, which was intense to hear from her especially because she hadn't prognosticated explicitly before.
But I like one thing that Paul said in the book, which is it's irresponsible to be more precise than you can be accurate. And so what we were both trained in, which I agree with, is to think about prognosis in terms of a likely range. Oftentimes you can say for this particular patient, I expect hours to days or days to weeks or weeks to months or years. And oftentimes that's enough to decide if you want to keep working as a neurosurgeon or how to think about having a baby, or whatever.
And I think another thing Paul writes about in the book is-- this paraphrasing it a little bit-- it's something like when you're grappling with existential distress, turning to medical knowledge and statistics is like trying to quench a thirst with salty water. And I think that's true.
I think oftentimes when people are asking how long have I got left, the underlying question is something like, who am I still? And what can I still have? And I think exploring that question of what you're hoping for and who you are, and what you're hoping to still do in your life, and then try to facilitate that, might be more important.
And then I learned something too, which was I sort of couldn't believe that she wasn't addressing prognosis. But then she knew that we could find it out, and we knew the statistics applied to us, which many patients don't. Their study said about 2/3 of patients with metastatic cancer think that cure is possible for them in their current treatment. But she knew that we didn't think that.
And I think she really brought Paul back to life. I think she recognized that. I don't know. I think she brought Paul back to life in a way that I didn't expect. And I think I really love her for that. And I think he loved her for that, too.
KENNETH WHITE: Thank you for that. And I think some of the things that you said earlier regarding hope is that some of-- correct, I don't mean to put words in your mouth. But some of the hope was sort of redefined in the hope for the book, and the hope for Cady, and the hope for leaving things behind. So--
LUCY KALANITHI: Totally. I think hope is not just a one-track thing. I agree. I think there's many things you can hope for. And people do hope for many things. Absolutely.
KENNETH WHITE: The work that all of us do, and your experience with Paul and Cady, is deeply connected to memory, location, and context. In your epilogue, you stated that Paul died on March 9th, 2015, in a hospital bed on the same floor about 200 yards from where Cady came into the world in the labor and delivery suite. This is a powerful context. As Cady grows up, how will you help her remember Paul?
LUCY KALANITHI: I think about this a lot. If anybody is in this situation, developing a relationship with somebody who's not here anymore, I'd love to know your experience and advice. So far there's been a couple of things. Obviously, there's this book that Cady left for-- that Paul left for Cady.
She's not old enough to know about it. She kind of knows what it is sort of. She can recognize it.
But I made her a picture book about Paul. She's like super aware of Elmo and Peppa Pig and Curious George. It's like she understands these characters very well.
And so I made her a book with pictures of Paul and kind of a story about Paul and family pictures, and pictures of his gravesite. And obviously, she doesn't know what a grave is. But she'll sort of grow up into knowing that. And I also want to make sure that he doesn't-- he's not sort of like canonized in a way that he's too perfect or unattainable or something because he wasn't.
And I don't even think that's fair to him, let alone fair to her. And so I try to think about that, like how do I keep him a normal person. And then I also think it's just interesting to see how kids sort of reacts to this context where she does understand that she has a dad but he's not here. And the other day she found a little party favor from our wedding, which is this little Indian bell that we gave out.
And I was like oh, you know what that is? That's for my wedding to daddy. And she said, oh, was I at the wedding?
And I'm like so self-centered. You know what? I was like, no, you weren't even born yet. You weren't even born yet. And she goes oh, that's because I was dead. I was like, poof.
Oh, wow. And so it's just like really interesting to raise a kid. I feel like she's teaching me too, or like telling me-- I don't know. And then I have found child life services and social workers to be super helpful in this context because there's certain language that is being studied that kids can handle. So I was told to say his body stopped working, which sounds scary and weird to me. But I think it's like makes it possible for children to get it, and she doesn't seem scared by that. So that was really helpful too, that team.
KENNETH WHITE: The book-- in the book, and in your epilogue, and what you've done since the book was published, you've been an advocate for better end-of-life care, earlier discussions and even my passion, advanced directives. So you've said that an advanced directive is an act of love. What do you mean by that, and how do you hope our health system will change?
LUCY KALANITHI: Oh, yeah. I love that advance directives are your passion. I'm like, oh, that's good.
KENNETH WHITE: Tim Short, too.
LUCY KALANITHI: So great. Yeah, so advanced directives-- I mean, basically advanced directive, as you know, is a legal document that came out of the patient autonomy movement where the Supreme Court decided that you could-- you had the right to refuse medical care, which is sort of like duh. But it's like your right as a patient.
And then advanced directives give somebody else the right to refuse medical care on your behalf. So it's sort of like a checkbox, yes or no document in a legal sense in most cases. Sometimes it's more detailed.
But I think in it is a really soulful thing, which is you trust somebody else to speak for you and you trust that they know what's important to you in your life and that they will be committed and devoted to you and who you are. And I think to me the more important thing than just the legal paperwork is somebody who just knows you really well and knows what's important to you. And I think Atul Gawande in the book Being Mortal really does a good job explaining how different types of medical care really fit people differently. And people could choose a whole range of types of care intensities of care, or goals of care.
And anyway, I think now I go to weddings. And when they talk about in sickness and in health, till death do us part, that part is the really romantic part to me of like all the things that you will go through with your family and with your partner. And I think that this is one of them. And so I think that document seems really dry and black and white. But I actually think it's really soulful. And in some ways really romantic to be in that role.
KENNETH WHITE: Thank you. I was happy to know that Paul-- one of his favorite writers was Susan Sontag. And one of my favorite books was one of his favorite books, Illness As Metaphor. And Susan Sontag wrote, "illness is the night side of life-- a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged at least for a spell to identify ourselves as citizens of that other place."
And in Stanford's obituary for Paul one of his friends said, "his dual citizenship as a doctor and as a seriously ill patient had taught him that respectful communication is the bedrock of all medicine, referencing the soft skills of medicine that are hard skills to teach and learn." So what can you share with us to help us equip ourselves to improve those soft skills in caring for our patients?
LUCY KALANITHI: Yeah, and Paul referenced that text at one point and said he'd been there many times on a tourist visa as a physician. And then he got his own passport. Yeah, so one of-- there was a moment that I really remember and think about with reference to communication skills and soft skills where Paul's targeted chemotherapy first-line treatment stopped working after about 11 months.
And at that point, he had his last day as a surgeon and was going to need to switch to doing more arduous chemotherapy. And that's like a new devastation when your cancer progresses and you're adjusting to another change. And he looked at his own scan. But then we went to see the nurse practitioner in oncology, who was amazing.
And she said the nicest thing-- she looked him right in the eye. And she said, I really wanted you to be the guy who's on Tarceva for seven years, and you're not that guy. And I'm so sorry.
And she really looked at him and really was sort of immersed in the experience. And I just remember the way that she said it and how allied she felt with us. And I think as a patient and as Paul's wife, we felt really vulnerable. And we felt like people acknowledging the situation that we were in, and then the words that people use-- it's like I came to realize, like, when you go see the provider and you're in the waiting room for an hour, and then in the room, and you've been waiting a couple of weeks for the appointment, and then you and your spouse are going to go home and parse every single thing that they said, it was just the words really mattered and the way they were said really mattered.
And there were all these studies that patient adherence to medication is higher when they feel allied with you. Or there's this great study out of Stanford where a histamine mediated rash went away sooner if the clinician had reassured the patient that it would. And the clinician was trustworthy and empathetic. And they like had actor clinicians. One of them was non-empathetic and one of them was not looking at the patient and sort of disheveled.
And it was really interesting how you are the medicine. And I just think that's really interesting. And I think also, in that vein, you do these teachings about how to communicate or how to communicate empathy.
And we think of those as soft skills. But there's another thing that Atul Gawande wrote in Being Mortal, where he went to shadow Susan Block, who's a palliative care doctor. And he ended up saying, she's not winging it. She has a whole sort of procedure about how to run a family meeting or how to run a co-discussion.
And it's just as technical and skillful as any other procedure in medicine. And I really think that's true. And I think those trainings are skills that really bear on not just patient satisfaction readings and that kind of thing, which are important, or how likely you are to get sued, which is also important, but the quality of your patient's care and how they actually do medically. Yeah, so I think about that a lot. And I think I-- yeah, it mattered.
KENNETH WHITE: It does matter. With your career now focused on health care value, you've asked these questions. What are we getting for our money in health care? Are we getting what we aspire to get? And what are your thoughts about that? Have you arrived at any conclusions or just more questions?
LUCY KALANITHI: Yeah, so prior to Paul getting sick, I was sort of headed in the direction of thinking about health care value from a cost perspective and like what proportion of GDP we spend on health care, and are we getting what we want for that? And I don't know quite where to start. But I'll just tell you two quick stories that make me think about health value.
One is all the things we do that are not measured that are really valuable that matter. When I was pregnant, I was 38 weeks pregnant and Paul was a patient in the ICU with chemo complications again. And I only found out later that the ICU critical care nurses and the L&D nurses had a whole plan for what would happen if I went into labor and became a patient. And then we had a baby, who was a patient and then Paul was over here, like can a critically ill patient go to L&D? Can a baby come to the ICU?
And I'm like, I love those nurses so much. And nobody's paying them to do that. And nobody's measuring that on their, whatever their advancement, or whatever. But I was just like that, that is so beautiful. And that's its own measure of value in health care.
And sort of related to that, the University of Pennsylvania did a study where they took Yelp reviews of hospital visits and compared them to HCAHPS scores. And they found that something like seven out of the 11 HCAHPS measures overlapped and were sort of reported informally when they did this qualitative analysis of Yelp reviews.
And then there were 12 other domains that were not measured at all in HCAHPS that were things like attention to the family caregiver or compassion. And I think that's really interesting, like who's defining value and defining it from the patient perspective, whatever's valuable to them. And then like I said before, I think the most interesting places to think about value in health care are where the business case for improvement aligns with the moral case for improvement.
And so for me, that end of life care is probably the biggest one for me. And then also caregivers and also burnout. So I think in many places in health care, we are getting great value. And in other places, we're still working on it.
And I think listening to our own moral distress about-- I have a lot of moral distress about care fragmentation and feeling like when I let this patient go, I don't know where they're getting picked up and they don't know either. I think when you listen to your own moral distress, you have a really good radar for what you're doing that feels valuable, and what you're doing that you wish could be more valuable.
KENNETH WHITE: It's the time element, too. A lot of times family meeting can take an hour or two hours. And we in the palliative care world and primary teams don't always have that kind of time. But it's so valuable.
One last question before we turn it over to our audience. Serious illness and death of a life partner is life shattering and grief can be unbearable. You said that you expected to feel only empty and heartbroken after Paul died-- this is in the epilogue-- and that you have discovered a certain peace and comfort and that you are still taking part in the life that Paul and you created together.
My question, after Paul died, how did you receive support from others? What did you find meaningful in expressions of condolence? I think we may all have struggled with how to reach out, what to say, what to do at times like this. So what advice would you have for us?
LUCY KALANITHI: Yeah, so I'm in a Facebook group called Hot Young Widows Club.
It's totally amazing. It's amazing. And it's really funny and really helpful. If you know anybody who needs it, Hot Young Widows Club. And the two things that people really don't like to hear are-- that I've learned from this group, too-- it's often not helpful to say at least and also everything happens for a reason.
I think people-- those are hard to hear because they think things feel terrible and nonsensical. And those can feel sort of like minimizing. That said, everything everybody said to me I knew that they were saying it with such good intention that I didn't tend to get offended.
But the things that were really helpful were people who were willing to just like show up and sit with me and do whatever I wanted to do, whether it was like watch The Bachelor or talk about Paul. And one of the best condolence cards I got said, this sucks. I love you.
And I was like, that's really good. Like that's-- I like that. And then one thing that's been really interesting is doing a book tour for Paul. I didn't know how that was going to feel.
I sort of started initially doing it out of a sense of duty for Paul, of course, like that I would just do whatever the editor told me would be good for Paul's writing. But I found it so helpful while grieving just to get to see Paul's name. And like Paul died a little over three years ago. And I still find it really helpful to talk about him.
And I have even fallen in love since Paul died and still feel so connected to Paul. And I want to be talking about Paul. So that has taught me about grief where just because somebody disappears, your love for them and your relationship with them don't. And it makes me think more about asking other people, what was your mom like? Or what are some of the things you miss most about your cousin? Or just getting to see their name alone is so nice.
KENNETH WHITE: So Lucy, before we go to the audience, I want to thank you for sharing your beautiful story. And for me, it's been-- I am filled with gratitude that I can--
LUCY KALANITHI: Thanks.
KENNETH WHITE: --here with you in this sacred space.
LUCY KALANITHI: Thanks.
KENNETH WHITE: And this sharing that you have given us is a gift today. I do believe Paul and you have answered Paul's nagging question, and that is, what makes life meaningful? Questions?
MARCIA DAY CHILDRESS: Thank you so much there. I like the fact that Ken mentioned this a sacred space because one thing that impressed me was how time stopped for this conversation and how much heart there was in the room, there is in the room right now. So thank you.
LUCY KALANITHI: Thanks.
MARCIA DAY CHILDRESS: And now is the invitation for all of you here to participate with questions and comments. We have a couple of mics. And we will ask you to please identify yourself when you ask your question or make your comment, and wait to have a mic brought to you.
ELIZABETH: Hi, my name is Elizabeth. I'm a fourth year nursing student. And thank you for sharing your stories. It was absolutely beautiful.
What advice would you give for other health care professionals, or how do you look at patients that aren't allowing their family into that intimacy and the vulnerability of this process of a critical illness like this? And how do you help them see that there can be beauty in allowing that vulnerability? And then kind of a follow up or a part two of that is, through Paul's writing, did you-- were you struck by anything that you hadn't noticed was as important to him? So yeah, just kind of those two parts.
LUCY KALANITHI: Yeah, in my experience, yeah, it's hard to know exactly the situation where a family member is not letting another person into what they're going through or whatever. I often have seen that as they're protecting the other person. And I think oftentimes you do carry around this secret fear.
And I think-- there's a woman who runs a lung cancer foundation in California, who gives the advice to families where she says, sit at your dinner table and then everybody go around and say what you're most afraid of, which is kind of cool. And it's like maybe you're most afraid of pain or maybe you're most afraid of what's going to happen to your family after you're gone, or whatever. You might not even know. And I think just that act is really powerful.
And then I also think just understanding that people will do a lot for their family, whether it's talk about it or not talk about it, or work to get things financially set or whatever. And so oftentimes they think framing it as an act of like familial love and service is helpful sometimes. And then some families, it might be better for them.
So I think it's hard to know. And then reading the book, there's not anything specifically that's surprising. Well, I was surprised a little bit that Paul right up front talks about how we had a challenging time in our marriage.
And I would say it's like when you're like a third grader and they teach you how to write an essay. And it's like start with a catchy intro. And I was like, this is your catchy intro is like our personal thing? And then I was like--
And then-- but I think if I were a reader, I'd be like, oh, this person is going to be real and sort of like, tell me what is really going on. And that's interesting. And then I think after Paul died, Random House, the editor, said, is there anything you want to take out?
Do you want to take that part out? Do you want to take out that you did an IVF? Do you want to-- and I was like, no, no. Let's-- it's Paul's writing. So I want to leave it.
But it also has generated some of the best conversations for me, which that's sort of been a lesson too. And then there's one line in the book about deciding to have Cady and where we're talking. And Paul says-- I say to Paul-- if we have a baby during this time, first of all, it's kind of crazy, and secondly, isn't it going to make this time so much harder for you? And having to say goodbye to a child will make dying more painful.
And he says, wouldn't it be great if it did? And I think that he writes about that in the book. But that wasn't a surprise to me in the book. But it was a surprise to me in real life. I was like, that sentence "wouldn't it be great if it did" I've carried on and really has helped me in other situations later. And so yeah, thanks for asking.
AUDIENCE: Hi, Lucy. I'm up here. My name is Sabrina Swoger, and I'm a second year medical student here at UVA. A lot of what you said about Paul's identity really struck me and how he kind of had to reshape that when he got sick. But I am curious more about your identity. And obviously his story has become so widespread, and everyone knows about it.
And you are associated. And you've been wrapped up and now you're talking about the book everywhere. And this has probably become a huge part of your life. But how do you maintain a sense of identity for you maybe inside and outside of this experience?
LUCY KALANITHI: Yeah, so I think it has been-- I'm trying to figure out how to even answer it. The thing that has been so nice is that I feel like at a time of real personal explosion, the fact of like being connected to a story publicly has meant that I haven't had to somehow pretend to be something different, like I wasn't sad. And I was just going to get back to work or something.
And so I feel like it's actually been really helpful to sort of have this as part of my identity as a storyteller. And then I think the fact of being sort of publicly vulnerable, I'm always sort of like trying to figure out where the line is. Like I don't want to overshare. But I also feel like there's so much professional seclusion in the health professions. And we're not sure whether we should hug our patients, and we're not sure how much of ourselves we should share with each other, or is an episode of depression going to derail your career?
And it's the only-- you're the only person who's ever faced that. And you don't know because no one says anything. So I think some of this has been really neat for me to feel like I can be my full self, too. And I think that even translates back into my clinical practice now, where as you develop more self-confidence and more gravitas in your career, now if I don't know the answer to a question, I'll say let's look it up on up-to-date together. And I'll turn the thing to--
And it's like now I feel able to do that because I feel confident and sort of human at the same time. So yeah, it's been-- and at the same time, I guess I'll say I don't quite know what my identity is. I'm like, do I really fit in academia?
I'm about to apply for promotion? But I'm like, does it fit? And I have to keep giving myself a pep talk about being an imposter. And I feel like-- but I'm also OK with uncertainty in a way that I wasn't before. I feel like it is OK to be different selves through your life.
And your trajectory doesn't have to be totally straight. And if you ask any mentor, it's like how they got to be where they are, oftentimes it's something like winding, or they ended up where they are not the way you would have thought. So I feel sort of comfortable with that idea, too. So partly it's like, I don't know.
MARIA DAY CHILDRESS: We have time for one more question. There, yeah.
AUDIENCE: Hi, my name's Lindsey. I'm a fourth year English undergrad. So I loved the way he tied up literature and science. I thought it was beautiful.
It was a pretty personal question, but also I thank you for everything that you guys have shared with us. There's in the video a little snippet of Cady being baptized and Paul talks for like a couple of pages about his beliefs and faith system. And I just-- I don't know. I was wondering like what role has faith played for you guys in such a like face-to-face encounter with the idea of death and the idea of existential questions, and a lot of people, like we enjoy putting off because we can, or we convince ourselves that we can? So--
LUCY KALANITHI: Yeah.
LUCY KALANITHI: Thanks for the question. Thanks for being here, too. It's interesting as Paul wrote about his faith in the book.
And people who are like die hard atheists come up to me and say, I really relate to the way he talks about that. And people who are really faithful Christians come up and say, I really relate to the way he talked about that. And it's like--
Because he's sort of talking about it as like it's a journey. It's a-- it's messy. So Paul definitely would have called himself a Christian. And at the same time, one time in medical school, I said, you know, so do you believe in God? And he said, I think it's just as important a question to ask do you believe in love?
It's sort of like, there's a lot of unknowable that really matters to us. And so he kind of distills that in the book, too. But I think he felt that Christianity and the depiction of suffering within Christianity actually was like-- and Jesus as a model for human suffering was actually really comforting to him. And that was really interesting to see.
I am sort of agnostic. And I think at the same time the structure of the church and the community of the church was so helpful in lots of different ways. In particular after Paul died and the rituals after Paul died, everything from like casseroles to a Christian burial. Like it was just really, really helpful and comforting. And I think I might have even said I was an atheist before, and now I'm agnostic, which feels like it's own-- that feels like a real progression in faith to me.
But anyway, I think-- yeah, Paul found it immensely helpful and at the same time found literature immensely helpful. I think the stories and just the modeling of meaning and accepting suffering were really powerful for him. Yeah, and family, too. And actually, I will say too, chaplains and the chaplaincy in the hospital were so powerfully beautiful that someone exists to be there just for that purpose, not medical at all, was a really powerful figure for us.
And we didn't explicitly call out palliative care. But that was the other team that was remarkably helpful for us. And my one piece of advice I give to families if they say what should we be doing, or maybe even for this family that you were mentioning, I think involving palliative care is the biggest, most helpful thing that I tell people.
KENNETH WHITE: Thank you. Thank you.
MARCIA DAY CHILDRESS: Thank you we've-- thank you. Perfect. OK, thank you.
We've come to the end of this hour. And I'd like to thank all of you for sharing this time with us and Lucy Kalanithi and Ken White for such a beautiful and probing and enlightening conversation. We also love it that this has been a very interprofessional audience on this interprofessional occasion.
And we hope that what has been discussed here and modeled here is carried on into your work. Now just a reminder, there are books available outside. There also is food available. And also please join us on Wednesday of this week, just two days away for our final medical center hour for the fall semester and our final medical center in our mini series on the centenary of the 1918 influenza.