What makes life worth living in the face of death
-
0:01 - 0:07A few days after my husband Paul
was diagnosed with stage IV lung cancer, -
0:07 - 0:10we were lying in our bed at home,
-
0:10 - 0:12and Paul said,
-
0:12 - 0:13"It's going to be OK."
-
0:14 - 0:17And I remember answering back,
-
0:17 - 0:18"Yes.
-
0:18 - 0:22We just don't know what OK means yet."
-
0:23 - 0:27Paul and I had met as first-year
medical students at Yale. -
0:27 - 0:30He was smart and kind and super funny.
-
0:31 - 0:35He used to keep a gorilla suit
in the trunk of his car, -
0:35 - 0:37and he'd say, "It's for emergencies only."
-
0:37 - 0:38(Laughter)
-
0:39 - 0:43I fell in love with Paul as I watched
the care he took with his patients. -
0:43 - 0:46He stayed late talking with them,
-
0:46 - 0:49seeking to understand
the experience of illness -
0:49 - 0:51and not just its technicalities.
-
0:53 - 0:55He later told me he fell in love with me
-
0:55 - 1:00when he saw me cry over an EKG
of a heart that had ceased beating. -
1:01 - 1:03We didn't know it yet,
-
1:03 - 1:06but even in the heady days of young love,
-
1:06 - 1:09we were learning how
to approach suffering together. -
1:11 - 1:13We got married and became doctors.
-
1:13 - 1:15I was working as an internist
-
1:15 - 1:19and Paul was finishing his training
as a neurosurgeon -
1:19 - 1:21when he started to lose weight.
-
1:22 - 1:27He developed excruciating back pain
and a cough that wouldn't go away. -
1:28 - 1:31And when he was admitted to the hospital,
-
1:31 - 1:35a CT scan revealed tumors
in Paul's lungs and in his bones. -
1:37 - 1:40We had both cared for patients
with devastating diagnoses; -
1:41 - 1:44now it was our turn.
-
1:47 - 1:49We lived with Paul's illness
for 22 months. -
1:50 - 1:52He wrote a memoir about facing mortality.
-
1:53 - 1:55I gave birth to our daughter Cady,
-
1:56 - 1:58and we loved her and each other.
-
1:59 - 2:03We learned directly how to struggle
through really tough medical decisions. -
2:05 - 2:09The day we took Paul
into the hospital for the last time -
2:09 - 2:11was the most difficult day of my life.
-
2:13 - 2:15When he turned to me at the end
-
2:15 - 2:17and said, "I'm ready,"
-
2:19 - 2:22I knew that wasn't just a brave decision.
-
2:22 - 2:24It was the right one.
-
2:25 - 2:28Paul didn't want a ventilator and CPR.
-
2:28 - 2:30In that moment,
-
2:30 - 2:32the most important thing to Paul
-
2:34 - 2:35was to hold our baby daughter.
-
2:37 - 2:39Nine hours later,
-
2:39 - 2:40Paul died.
-
2:44 - 2:46I've always thought of myself
as a caregiver -- -
2:46 - 2:48most physicians do --
-
2:48 - 2:51and taking care of Paul
deepened what that meant. -
2:52 - 2:56Watching him reshape
his identity during his illness, -
2:56 - 2:59learning to witness and accept his pain,
-
2:59 - 3:02talking together through his choices --
-
3:02 - 3:03those experiences taught me
-
3:03 - 3:09that resilience does not mean
bouncing back to where you were before, -
3:09 - 3:11or pretending that
the hard stuff isn't hard. -
3:12 - 3:14It is so hard.
-
3:15 - 3:18It's painful, messy stuff.
-
3:19 - 3:21But it's the stuff.
-
3:21 - 3:24And I learned that when we
approach it together, -
3:25 - 3:29we get to decide what success looks like.
-
3:31 - 3:34One of the first things
Paul said to me after his diagnosis was, -
3:35 - 3:37"I want you to get remarried."
-
3:38 - 3:42And I was like, whoa, I guess
we get to say anything out loud. -
3:42 - 3:44(Laughter)
-
3:44 - 3:46It was so shocking
-
3:46 - 3:48and heartbreaking ...
-
3:49 - 3:51and generous,
-
3:51 - 3:52and really comforting
-
3:52 - 3:55because it was so starkly honest,
-
3:55 - 3:58and that honesty turned out
to be exactly what we needed. -
3:59 - 4:00Early in Paul's illness,
-
4:00 - 4:04we agreed we would
just keep saying things out loud. -
4:05 - 4:08Tasks like making a will,
-
4:08 - 4:10or completing our advance directives --
-
4:10 - 4:13tasks that I had always avoided --
-
4:13 - 4:15were not as daunting as they once seemed.
-
4:16 - 4:20I realized that completing
an advance directive is an act of love -- -
4:21 - 4:23like a wedding vow.
-
4:24 - 4:26A pact to take care of someone,
-
4:26 - 4:28codifying the promise
-
4:28 - 4:30that til death do us part,
-
4:31 - 4:32I will be there.
-
4:34 - 4:36If needed, I will speak for you.
-
4:37 - 4:39I will honor your wishes.
-
4:41 - 4:45That paperwork became
a tangible part of our love story. -
4:47 - 4:48As physicians,
-
4:48 - 4:50Paul and I were in a good position
-
4:50 - 4:53to understand and even
accept his diagnosis. -
4:54 - 4:55We weren't angry about it,
-
4:55 - 4:57luckily,
-
4:57 - 5:01because we'd seen so many patients
in devastating situations, -
5:01 - 5:04and we knew that death is a part of life.
-
5:06 - 5:07But it's one thing to know that;
-
5:07 - 5:09it was a very different experience
-
5:09 - 5:14to actually live with the sadness
and uncertainty of a serious illness. -
5:15 - 5:18Huge strides are being made
against lung cancer, -
5:18 - 5:23but we knew that Paul likely had
months to a few years left to live. -
5:25 - 5:26During that time,
-
5:26 - 5:29Paul wrote about his transition
from doctor to patient. -
5:30 - 5:34He talked about feeling
like he was suddenly at a crossroads, -
5:34 - 5:37and how he would have thought
he'd be able to see the path, -
5:37 - 5:40that because he treated so many patients,
-
5:40 - 5:42maybe he could follow in their footsteps.
-
5:43 - 5:45But he was totally disoriented.
-
5:46 - 5:48Rather than a path,
-
5:48 - 5:50Paul wrote,
-
5:50 - 5:52"I saw instead
-
5:52 - 5:56only a harsh, vacant,
gleaming white desert. -
5:57 - 6:00As if a sandstorm
had erased all familiarity. -
6:01 - 6:03I had to face my mortality
-
6:04 - 6:08and try to understand
what made my life worth living, -
6:09 - 6:12and I needed my oncologist's
help to do so." -
6:15 - 6:17The clinicians taking care of Paul
-
6:18 - 6:22gave me an even deeper appreciation
for my colleagues in health care. -
6:22 - 6:24We have a tough job.
-
6:24 - 6:29We're responsible for helping patients
have clarity around their prognoses -
6:29 - 6:31and their treatment options,
-
6:31 - 6:33and that's never easy,
but it's especially tough -
6:33 - 6:37when you're dealing with potentially
terminal illnesses like cancer. -
6:38 - 6:42Some people don't want to know
how long they have left, -
6:42 - 6:43others do.
-
6:44 - 6:46Either way, we never have those answers.
-
6:48 - 6:51Sometimes we substitute hope
-
6:52 - 6:54by emphasizing the best-case scenario.
-
6:56 - 6:58In a survey of physicians,
-
6:58 - 7:0355 percent said
they painted a rosier picture -
7:03 - 7:05than their honest opinion
-
7:05 - 7:07when describing a patient's prognosis.
-
7:08 - 7:11It's an instinct born out of kindness.
-
7:12 - 7:14But researchers have found
-
7:14 - 7:19that when people better understand
the possible outcomes of an illness, -
7:19 - 7:20they have less anxiety,
-
7:21 - 7:23greater ability to plan
-
7:24 - 7:26and less trauma for their families.
-
7:29 - 7:32Families can struggle
with those conversations, -
7:32 - 7:38but for us, we also found that information
immensely helpful with big decisions. -
7:39 - 7:40Most notably,
-
7:41 - 7:42whether to have a baby.
-
7:45 - 7:50Months to a few years meant
Paul was not likely to see her grow up. -
7:51 - 7:53But he had a good chance
of being there for her birth -
7:53 - 7:55and for the beginning of her life.
-
7:57 - 7:59I remember asking Paul
-
7:59 - 8:02if he thought having
to say goodbye to a child -
8:02 - 8:05would make dying even more painful.
-
8:06 - 8:08And his answer astounded me.
-
8:08 - 8:10He said,
-
8:10 - 8:12"Wouldn't it be great if it did?"
-
8:16 - 8:17And we did it.
-
8:18 - 8:20Not in order to spite cancer,
-
8:22 - 8:23but because we were learning
-
8:23 - 8:29that living fully
means accepting suffering. -
8:32 - 8:34Paul's oncologist tailored his chemo
-
8:34 - 8:38so he could continue
working as a neurosurgeon, -
8:38 - 8:40which initially we thought
was totally impossible. -
8:42 - 8:43When the cancer advanced
-
8:43 - 8:45and Paul shifted from surgery to writing,
-
8:46 - 8:50his palliative care doctor
prescribed a stimulant medication -
8:50 - 8:51so he could be more focused.
-
8:53 - 8:56They asked Paul about
his priorities and his worries. -
8:57 - 9:01They asked him what trade-offs
he was willing to make. -
9:02 - 9:07Those conversations
are the best way to ensure -
9:07 - 9:11that your health care matches your values.
-
9:12 - 9:15Paul joked that it's not
like that "birds and bees" talk -
9:15 - 9:16you have with your parents,
-
9:16 - 9:19where you all get it over with
as quickly as possible, -
9:19 - 9:21and then pretend it never happened.
-
9:21 - 9:23You revisit the conversation
as things change. -
9:24 - 9:26You keep saying things out loud.
-
9:28 - 9:30I'm forever grateful
-
9:30 - 9:32because Paul's clinicians felt
-
9:32 - 9:35that their job wasn't to try
to give us answers they didn't have, -
9:35 - 9:39or only to try to fix things for us,
-
9:39 - 9:41but to counsel Paul
through painful choices ... -
9:42 - 9:47when his body was failing
but his will to live wasn't. -
9:49 - 9:51Later, after Paul died,
-
9:52 - 9:55I received a dozen bouquets of flowers,
-
9:55 - 9:56but I sent just one ...
-
9:57 - 9:59to Paul's oncologist,
-
9:59 - 10:03because she supported his goals
-
10:03 - 10:05and she helped him weigh his choices.
-
10:07 - 10:11She knew that living
means more than just staying alive. -
10:14 - 10:17A few weeks ago,
a patient came into my clinic. -
10:17 - 10:20A woman dealing
with a serious chronic disease. -
10:21 - 10:24And while we were talking
about her life and her health care, -
10:24 - 10:27she said, "I love my palliative care team.
-
10:28 - 10:30They taught me that it's OK to say 'no'."
-
10:32 - 10:33Yeah, I thought, of course it is.
-
10:35 - 10:37But many patients don't feel that.
-
10:39 - 10:41Compassion and Choices did a study
-
10:41 - 10:44where they asked people
about their health care preferences. -
10:45 - 10:49And a lot of people
started their answers with the words -
10:49 - 10:50"Well, if I had a choice ..."
-
10:52 - 10:54If I had a choice.
-
10:55 - 10:57And when I read that "if,"
-
10:57 - 10:59I understood better
-
10:59 - 11:02why one in four people
-
11:02 - 11:07receives excessive or unwanted
medical treatment, -
11:07 - 11:12or watches a family member receive
excessive or unwanted medical treatment. -
11:14 - 11:16It's not because doctors don't get it.
-
11:16 - 11:17We do.
-
11:18 - 11:20We understand the real
psychological consequences -
11:20 - 11:23on patients and their families.
-
11:24 - 11:26The things is, we deal with them, too.
-
11:27 - 11:32Half of critical care nurses
and a quarter of ICU doctors -
11:32 - 11:35have considered quitting their jobs
-
11:35 - 11:40because of distress over feeling
that for some of their patients, -
11:40 - 11:43they've provided care
that didn't fit with the person's values. -
11:45 - 11:48But doctors can't make sure
your wishes are respected -
11:48 - 11:50until they know what they are.
-
11:52 - 11:56Would you want to be on life support
if it offered any chance of longer life? -
11:57 - 12:01Are you most worried
about the quality of that time, -
12:01 - 12:02rather than quantity?
-
12:03 - 12:06Both of those choices
are thoughtful and brave, -
12:07 - 12:09but for all of us, it's our choice.
-
12:10 - 12:12That's true at the end of life
-
12:13 - 12:15and for medical care throughout our lives.
-
12:16 - 12:18If you're pregnant,
do you want genetic screening? -
12:18 - 12:20Is a knee replacement right or not?
-
12:22 - 12:25Do you want to do dialysis
in a clinic or at home? -
12:27 - 12:28The answer is:
-
12:29 - 12:30it depends.
-
12:31 - 12:35What medical care will help you
live the way you want to? -
12:37 - 12:39I hope you remember that question
-
12:39 - 12:42the next time you face
a decision in your health care. -
12:43 - 12:46Remember that you always have a choice,
-
12:47 - 12:53and it is OK to say no to a treatment
that's not right for you. -
12:55 - 12:58There's a poem by W.S. Merwin --
-
12:58 - 13:00it's just two sentences long --
-
13:00 - 13:02that captures how I feel now.
-
13:05 - 13:08"Your absence has gone through me
-
13:08 - 13:11like thread through a needle.
-
13:12 - 13:15Everything I do
is stitched with its color." -
13:17 - 13:21For me that poem evokes my love for Paul,
-
13:22 - 13:23and a new fortitude
-
13:24 - 13:27that came from loving and losing him.
-
13:28 - 13:31When Paul said, "It's going to be OK,"
-
13:32 - 13:36that didn't mean
that we could cure his illness. -
13:37 - 13:42Instead, we learned to accept
both joy and sadness at the same time; -
13:43 - 13:47to uncover beauty and purpose
-
13:47 - 13:51both despite and because we are all born
-
13:52 - 13:53and we all die.
-
13:55 - 13:57And for all the sadness
and sleepless nights, -
13:58 - 13:59it turns out there is joy.
-
14:00 - 14:03I leave flowers on Paul's grave
-
14:03 - 14:06and watch our two-year-old
run around on the grass. -
14:07 - 14:12I build bonfires on the beach
and watch the sunset with our friends. -
14:14 - 14:17Exercise and mindfulness
meditation have helped a lot. -
14:19 - 14:20And someday,
-
14:20 - 14:22I hope I do get remarried.
-
14:25 - 14:27Most importantly,
I get to watch our daughter grow. -
14:29 - 14:33I've thought a lot
about what I'm going to say to her -
14:33 - 14:34when she's older.
-
14:36 - 14:38"Cady,
-
14:39 - 14:42engaging in the full
range of experience -- -
14:42 - 14:44living and dying,
-
14:44 - 14:45love and loss --
-
14:46 - 14:47is what we get to do.
-
14:49 - 14:54Being human doesn't happen
despite suffering. -
14:56 - 14:57It happens within it.
-
14:59 - 15:01When we approach suffering together,
-
15:02 - 15:04when we choose not to hide from it,
-
15:05 - 15:06our lives don't diminish,
-
15:07 - 15:08they expand."
-
15:10 - 15:13I've learned that cancer
isn't always a battle. -
15:14 - 15:16Or if it is,
-
15:16 - 15:19maybe it's a fight for something
different than we thought. -
15:21 - 15:23Our job isn't to fight fate,
-
15:24 - 15:26but to help each other through.
-
15:27 - 15:29Not as soldiers
-
15:30 - 15:31but as shepherds.
-
15:34 - 15:36That's how we make it OK,
-
15:36 - 15:37even when it's not.
-
15:39 - 15:40By saying it out loud,
-
15:41 - 15:43by helping each other through ...
-
15:45 - 15:47and a gorilla suit never hurts, either.
-
15:48 - 15:49Thank you.
-
15:50 - 15:57(Applause)
- Title:
- What makes life worth living in the face of death
- Speaker:
- Lucy Kalanithi
- Description:
-
In this deeply moving talk, Lucy Kalanithi reflects on life and purpose, sharing the story of her late husband, Paul, a young neurosurgeon who turned to writing after his terminal cancer diagnosis. "Engaging in the full range of experience -- living and dying, love and loss -- is what we get to do," Kalanithi says. "Being human doesn't happen despite suffering -- it happens within it."
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDTalks
- Duration:
- 16:09
Brian Greene edited English subtitles for What makes life worth living in the face of death | ||
Brian Greene approved English subtitles for What makes life worth living in the face of death | ||
Brian Greene edited English subtitles for What makes life worth living in the face of death | ||
Joanna Pietrulewicz accepted English subtitles for What makes life worth living in the face of death | ||
Joanna Pietrulewicz edited English subtitles for What makes life worth living in the face of death | ||
Joanna Pietrulewicz edited English subtitles for What makes life worth living in the face of death | ||
Leslie Gauthier edited English subtitles for What makes life worth living in the face of death | ||
Leslie Gauthier edited English subtitles for What makes life worth living in the face of death |