What makes life worth living in the face of death | Lucy Kalanithi

309,144 views ・ 2017-06-07

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