completing an advance health care directive as “an act of love, like a wedding vow.”
Kalanithi spoke with Cancer Today
about her grief and about how frank
discussions in the face of death can be
C T: What is your advice for people who
are going through what you went through
and caring for someone who is sick?
KALANITHI: Paul at one point told his
parents, “I want everybody else to take
care of Lucy, so Lucy can take care of me.”
This was super helpful. I felt like I really
needed to do self-care, which for me was
exercise, sleeping as much as possible—
[even with] a newborn—meditation and
just maintaining my own friendships. It’s
like there is an instinct [when caring for
someone] to spend every day in the hospital. I think it’s important to make sure that
you’re solid enough to be taking care of the
person. I think getting set up with a palliative care team is also helpful. They fill in
a lot of gaps. There are so many medical
decisions, and they’re good at forcing you
to think about quality of life.
CT: Why is that important?
KALANI THI: Weighing treatment
decisions is hard. Is this third round of
chemotherapy going to make it so bad
that you can’t travel—and it’s not likely
to work? Does going on a ventilator mean
you will never return home? One trend
that’s happening now [in medicine] is to
use all possible technology and medications. I think, at a certain point, those
treatments might not help anymore. For
Paul and I, this is something we talked
about as physicians, but it’s difficult to
get at this idea more generally for people
[without that professional experience].
This is often the first time people are
thinking about this stuff or learning
about their treatments. Then, patients
and their families have traumatic experiences surrounding end-of-life care. When
you work in medicine, you feel like you’re
witnessing an epidemic. But when it’s just
you [the average person] and your family,
you have no idea that you’re part of this
bigger cultural narrative that’s actually
C T: What’s the solution?
KALANITHI: To me, I feel like it’s
embracing the idea of palliative care,
which requires understanding that our
bodies do fail over time. I think if medical
culture were different, palliative care
wouldn’t be a separate field. The field
grew to take care of people’s symptoms
in a better way than what was being
done. I kind of think that if the medical
system was flipped over and palliative
care was the center of it, then we’d have
more conversations [about ensuring good
quality of life]. Some studies also show
that people who use hospice and palliative care may actually live longer. You
may be weakened by trying to do more
treatments at a certain point.
CT: What did talking with Paul about his
wishes do for your relationship?
KALANITHI: I felt much closer to Paul
because we really talked about the
illness and put that in context with all
these other major decisions like writing
a book or deciding to have Cady. I think
that stuff can be so hard to talk about.
In my experience, we all carry those
fears, no matter what. To me, it was
helpful to connect over those fears.
There’s this woman, Bonnie Addario,
who runs the [Bonnie J. Addario] Lung
Cancer Foundation out here. She gives
the advice: Sit at your kitchen table and
go around and have everybody say what
they’re most scared of. It could be, I’m
scared of losing you, I’m scared of being
in pain, or whatever. She says that if
people do that, then they end up having
conversations about taking care of each
other. It’s just hard to start.
CT: What’s next for you?
KALANITHI: My career as a physician
has always been based in relationship to
the patient—helping people seek health
care that matches who they are. I think
that [because of ] what happened with
our family, I have the opportunity now to
really think about being a voice in cultural
change in how we approach mortality, and
the way that reflects into our health care
treatment and broadly in end-of-life care
in America. —MARCI A. LANDSMANN
TALK MORE ABOUT THE BOOK
Through Sept. 22, Cancer Today will be
discussing When Breath Becomes Air in our
online book group, which will feature a
Facebook Live discussion with Lucy Kalanithi.
Lucy Kalanithi stands beside
her husband, Paul, and holds
their daughter, Cady.