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-- [APPLAUSE] 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. [LAUGHTER] 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. [LAUGHTER] 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? [LAUGHTER] 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. [LAUGHTER] 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. [LAUGHTER] 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? [LAUGHTER] 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. [LAUGHTER] 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. [LAUGHTER] 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-- [LAUGHTER] 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-- [LAUGHTER] 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. - 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-- [LAUGHTER] 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. [LAUGHTER] 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.
