Atul Gawande "Being Mortal: Medicine and What Matters in the End"

00:57:52
https://www.youtube.com/watch?v=VDdtAiTrwt4

概要

TLDRIn his talk, Dr. Atul Gawande emphasizes the importance of addressing mortality and end-of-life care in medicine. He argues that healthcare professionals must engage in meaningful conversations with patients about their priorities and goals, rather than solely focusing on prolonging life. Through personal anecdotes and case studies, Gawande illustrates the challenges faced by patients and families dealing with terminal illnesses. He advocates for a shift in focus from merely extending life to enhancing the quality of life, encouraging healthcare providers to ask patients about their fears, hopes, and what constitutes a good life for them. Gawande highlights the role of palliative care and the necessity of understanding individual patient needs to provide compassionate and effective care, ultimately aiming for a good life until the very end.

収穫

  • 🩺 Importance of addressing mortality in medicine
  • 💬 Engage in meaningful conversations with patients
  • 🎯 Focus on enhancing quality of life
  • 📋 Understand patient priorities and goals
  • 🏥 Role of palliative care in treatment
  • 👨‍👩‍👧‍👦 Family involvement in decision-making
  • 🌟 Hope should not be lost in end-of-life care
  • 🔍 Shift from prolonging life to improving life
  • 🗣️ Ask open-ended questions to patients
  • 💖 Aim for a good life until the end

タイムライン

  • 00:00:00 - 00:05:00

    Samir Voram, a pediatric resident at the University of Chicago, welcomes attendees to the Pediatric Grand Rounds, highlighting the collaboration with various institutions to present a talk on end-of-life care by Dr. Atul Gawande.

  • 00:05:00 - 00:10:00

    Dr. Mark Siegler introduces Dr. Atul Gawande, detailing his impressive background in medicine, writing, and public health, and emphasizing his expertise in improving safety and efficiency in healthcare, particularly regarding end-of-life issues.

  • 00:10:00 - 00:15:00

    Dr. Gawande shares his personal journey in medicine, expressing a lack of training in dealing with mortality and reflecting on the challenges faced when patients cannot be fixed, leading to a deeper exploration of end-of-life care.

  • 00:15:00 - 00:20:00

    He recounts a poignant case involving a young patient with Hodgkin lymphoma, illustrating the emotional burden on families when faced with difficult treatment decisions and the inadequacy of medical guidance in such situations.

  • 00:20:00 - 00:25:00

    Dr. Gawande discusses his research into palliative care, emphasizing the importance of understanding patients' priorities and goals beyond merely prolonging life, and the need for effective communication in these discussions.

  • 00:25:00 - 00:30:00

    He shares another case of a patient with a rare cancer, highlighting the emotional turmoil and decision-making challenges faced by patients and families when treatment options become limited.

  • 00:30:00 - 00:35:00

    Dr. Gawande reflects on the lessons learned from hospice workers and palliative care specialists, emphasizing the need to recognize patients' priorities and the importance of having conversations about goals and fears.

  • 00:35:00 - 00:40:00

    He recounts his father's experience with a terminal illness, illustrating the complexities of treatment decisions and the importance of aligning medical options with patients' values and desires for their remaining time.

  • 00:40:00 - 00:45:00

    Dr. Gawande discusses the significance of asking patients about their priorities and fears, noting that many patients do not have these conversations with their physicians, which can lead to poorer outcomes and increased suffering.

  • 00:45:00 - 00:50:00

    He emphasizes the need for a shift in medical practice to focus on quality of life and well-being, rather than solely on extending life, advocating for a more holistic approach to patient care.

  • 00:50:00 - 00:57:52

    In conclusion, Dr. Gawande calls for a re-evaluation of what constitutes a good life and a good death, urging healthcare professionals to prioritize patients' values and goals in their care, ultimately aiming for a life worth living until the very end.

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ビデオQ&A

  • What is the main focus of Dr. Gawande's talk?

    The main focus is on addressing mortality and end-of-life care in medicine, emphasizing the need for meaningful conversations with patients about their priorities.

  • What does Dr. Gawande suggest healthcare providers should do?

    He suggests that healthcare providers should engage patients in discussions about their fears, hopes, and what constitutes a good life for them.

  • What is the significance of palliative care according to Dr. Gawande?

    Palliative care is significant as it focuses on enhancing the quality of life for patients with serious illnesses, rather than just prolonging life.

  • How does Dr. Gawande illustrate his points?

    He shares personal anecdotes and case studies to illustrate the challenges faced by patients and families dealing with terminal illnesses.

  • What shift does Dr. Gawande advocate for in healthcare?

    He advocates for a shift in focus from merely prolonging life to enhancing the quality of life.

  • What is the role of family in end-of-life discussions?

    Family plays a crucial role as they often need to make decisions on behalf of the patient, and understanding the patient's priorities is essential.

  • What does Dr. Gawande believe about hope in end-of-life care?

    He believes that hope should not be lost in end-of-life care and that real hope can coexist with discussions about mortality.

  • What is the importance of understanding patient priorities?

    Understanding patient priorities helps guide treatment decisions and ensures that care aligns with what is most important to the patient.

  • How does Dr. Gawande suggest improving communication in healthcare?

    He suggests that healthcare providers should ask open-ended questions and listen more to patients to understand their needs better.

  • What is the ultimate goal of healthcare according to Dr. Gawande?

    The ultimate goal is to provide a good life for patients, even in the face of terminal illness.

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  • 00:00:26
    my name is Samir voram and in the final
  • 00:00:27
    year of my pediatric residency here at
  • 00:00:30
    the University of Chicago I'd like to
  • 00:00:32
    thank Dr Bob D for giving me this
  • 00:00:34
    opportunity as our director of pediatric
  • 00:00:36
    Grand rounds to welcome all of you
  • 00:00:41
    today Thursdays
  • 00:00:43
    between 12: and 1 p.m. in Billings
  • 00:00:46
    Auditorium is traditionally a time for
  • 00:00:48
    Pediatric Grand rounds a discussion on
  • 00:00:50
    the latest Innovations of the care and
  • 00:00:52
    treatment of
  • 00:00:54
    children today the department of
  • 00:00:56
    Pediatrics in collaboration with our
  • 00:00:59
    co-sponsor ERS and partners the mlan
  • 00:01:01
    Center for Clinical medical ethics the
  • 00:01:03
    University of Chicago Institute of
  • 00:01:05
    politics and the buck bomb Institute for
  • 00:01:07
    clinical Excellence has a unique
  • 00:01:10
    opportunity to provide you with a talk
  • 00:01:13
    by one of the world's leading voices in
  • 00:01:17
    the current and future course of health
  • 00:01:20
    and
  • 00:01:21
    medicine today I'd like to welcome all
  • 00:01:25
    faculty staff students and members of
  • 00:01:28
    the Chicago community
  • 00:01:30
    on a talk about being mortal medicine
  • 00:01:34
    and what matters in the end our
  • 00:01:37
    distinguished speaker will be introduced
  • 00:01:39
    today by our own distinguished
  • 00:01:43
    professor of medicine and
  • 00:01:46
    surgery executive director of the buck
  • 00:01:48
    bomb Institute for clinical
  • 00:01:50
    excellence and director of the mlan
  • 00:01:53
    Center for Clinical ethics mark seagler
  • 00:01:55
    thank you and
  • 00:01:57
    welcome Samir thank you so much um on
  • 00:02:01
    behalf of the Department of Pediatrics
  • 00:02:04
    uh I want to thank Samir and Bob d uh
  • 00:02:06
    standing up um and also the Institute of
  • 00:02:10
    politics Steve Edwards is here with us
  • 00:02:12
    today the buck Bal Institute for
  • 00:02:14
    clinical Excellence Mrs K bucksam is
  • 00:02:17
    able to join us and the mlan Center for
  • 00:02:20
    Clinical medical ethics I welcome you
  • 00:02:22
    all to today's lecture um it's a
  • 00:02:25
    pleasure for me to introduce our speaker
  • 00:02:28
    Dr Rell gandi Dr gandi did his
  • 00:02:31
    undergraduate work at Stanford and then
  • 00:02:34
    attended Oxford University as a road
  • 00:02:37
    scholar he received both his medical
  • 00:02:40
    degree and his Masters in public health
  • 00:02:43
    from Harvard Dr gandi is a surgeon
  • 00:02:47
    writer and public health researcher he
  • 00:02:51
    practices General and endocrine surgery
  • 00:02:54
    at Brigham and Women's Hospital in
  • 00:02:56
    Boston he's a professor of surgery the
  • 00:03:00
    Harvard Medical School and a professor
  • 00:03:02
    of Health policy in the Harvard School
  • 00:03:04
    of Public Health since
  • 00:03:07
    1998 Dr gandi has been a staff writer
  • 00:03:11
    for the New Yorker
  • 00:03:13
    magazine he has written three
  • 00:03:15
    best-selling
  • 00:03:16
    books
  • 00:03:18
    complications second book better and
  • 00:03:21
    most recent book before this one the
  • 00:03:23
    checklist
  • 00:03:25
    Manifesto Dr gandi has won two national
  • 00:03:29
    magazine Awards Wards a mccartha
  • 00:03:31
    fellowship and has been named one of the
  • 00:03:34
    world's 100 most influential thinkers
  • 00:03:38
    but by both Tha magazine and the journal
  • 00:03:41
    foreign policy Dr gandi is widely known
  • 00:03:45
    as an expert on reducing error improving
  • 00:03:49
    safety and increasing efficiency in
  • 00:03:52
    modern surgery and
  • 00:03:55
    Medicine Dr gandi has now turned his
  • 00:03:58
    Focus to end of life issues I especially
  • 00:04:03
    enjoyed his Recollections from his
  • 00:04:05
    medical student days of reading The
  • 00:04:08
    Death of Ivan illich recounted in the
  • 00:04:11
    new book uh I I told Dr Kandi we are
  • 00:04:15
    still teaching that great Nolla to our
  • 00:04:18
    students today Dr gandi will speak about
  • 00:04:22
    his book being mortal medicine and what
  • 00:04:26
    matters in the end please join me in
  • 00:04:29
    giving a war warm welcome to drel
  • 00:04:32
    [Applause]
  • 00:04:45
    gandi thank you all for coming thank you
  • 00:04:47
    for coming from so many different places
  • 00:04:49
    we we scavenged a pediatric Grand rounds
  • 00:04:52
    and brought people in from The Institute
  • 00:04:53
    of politics and and all over and I'm
  • 00:04:56
    really grateful for all of you who would
  • 00:04:58
    um make time in day to talk about a hard
  • 00:05:02
    subject um you know part of what drove
  • 00:05:05
    me to take on this particular subject
  • 00:05:07
    was the sense I had as we went as I went
  • 00:05:09
    along through my training and through
  • 00:05:11
    residency and also as I was writing
  • 00:05:13
    about some of these experiences that I
  • 00:05:15
    wasn't very good at dealing with
  • 00:05:17
    problems of mortality I opened the book
  • 00:05:19
    by saying I learned about a lot in
  • 00:05:20
    medical school mortality wasn't one of
  • 00:05:24
    them I think our perspective on it and
  • 00:05:28
    you know to the extent I I had some
  • 00:05:30
    perception about what um mortality might
  • 00:05:33
    entail it came actually in a seminar
  • 00:05:35
    where we confronted The Death of vient
  • 00:05:37
    Ivan illich but for the most part I
  • 00:05:39
    think we saw our jobs as learning how to
  • 00:05:41
    fix people that's what I was excited
  • 00:05:43
    about that's why I ultimately loved
  • 00:05:46
    surgery this idea that you could go into
  • 00:05:49
    an operating room take care of a problem
  • 00:05:51
    and leave and have made somebody better
  • 00:05:53
    for it it made you feel tremendously
  • 00:05:57
    competent we didn't feel terribly
  • 00:05:59
    competent when we couldn't fix people
  • 00:06:02
    however and um what I found in practice
  • 00:06:05
    was that I often had people who um had
  • 00:06:09
    many problems we couldn't fix there were
  • 00:06:12
    patients who were terminally ill there
  • 00:06:14
    were people with chronic illness that
  • 00:06:16
    just weren't getting better there were
  • 00:06:18
    people with aging and Frailty that were
  • 00:06:20
    just um that were continuing to progress
  • 00:06:23
    onward whatever I might have to offer
  • 00:06:26
    and I didn't find I was especially good
  • 00:06:29
    at dealing with these
  • 00:06:30
    situations um any clinician ends up
  • 00:06:35
    finding that family come to you for
  • 00:06:36
    advice and those were especially the
  • 00:06:39
    moments that I found very hard in my
  • 00:06:42
    second book better I wrote about a
  • 00:06:44
    pediatric case um involving a family
  • 00:06:48
    member my wife's
  • 00:06:50
    cousin um named cie was 12 years old and
  • 00:06:54
    she developed a hodkin lymphoma with a
  • 00:06:57
    large mass that had grown in her ch
  • 00:07:00
    and she received successful treatment at
  • 00:07:02
    a place just like this with radiation
  • 00:07:06
    and chemotherapy making the disease go
  • 00:07:09
    away but a few months later it didn't
  • 00:07:12
    turn out to be successful after all the
  • 00:07:15
    the cancer came back and grew back even
  • 00:07:17
    bigger than it had
  • 00:07:20
    started Hodgkins lymphoma is highly um
  • 00:07:24
    curable for a large percentage of kids
  • 00:07:27
    but when it comes back the prognosis is
  • 00:07:30
    much
  • 00:07:32
    worse they tried one round of
  • 00:07:35
    chemotherapy then another round she had
  • 00:07:37
    complications she ended up in the
  • 00:07:38
    hospital for a few
  • 00:07:41
    months chest tubes in both sides a
  • 00:07:44
    catheter to drain fluid from her
  • 00:07:47
    belly
  • 00:07:49
    um in the hospital day in day out
  • 00:07:52
    getting therapies and her father and
  • 00:07:56
    mother called trying to figure out what
  • 00:07:58
    they should do
  • 00:08:01
    they had been told that now what they
  • 00:08:04
    could consider at this point was an
  • 00:08:06
    experimental therapy with a bone marrow
  • 00:08:09
    transplant um and highd Does
  • 00:08:13
    chemotherapy that you know there wasn't
  • 00:08:15
    much information about whether it would
  • 00:08:17
    do good or not and would involve a
  • 00:08:21
    pretty tough course for
  • 00:08:23
    C and they wanted to know whether that
  • 00:08:25
    was something they should do or should
  • 00:08:28
    not do
  • 00:08:31
    and since the doctor she was speaking
  • 00:08:35
    to gave them plenty of
  • 00:08:37
    information the risks the benefits the
  • 00:08:39
    pros the
  • 00:08:40
    cons but couldn't offer
  • 00:08:44
    guidance all they could say is so what
  • 00:08:46
    do you want to
  • 00:08:48
    do they called me
  • 00:08:51
    up and I didn't have anything better to
  • 00:08:56
    offer than what her their doctors had
  • 00:08:59
    said you
  • 00:09:01
    know the only thing I could say to them
  • 00:09:04
    was it was okay if you decided not to go
  • 00:09:08
    for
  • 00:09:09
    it decided to take her
  • 00:09:13
    home they sort of said
  • 00:09:16
    thanks and they were left on their own
  • 00:09:18
    with this decision this most
  • 00:09:20
    heartbreaking of
  • 00:09:21
    decisions and uh a week later they sent
  • 00:09:24
    around a note to the family that they
  • 00:09:26
    were taking C home and about two weeks
  • 00:09:29
    after that it was a couple days after
  • 00:09:32
    Easter they said that um she'd
  • 00:09:36
    died at
  • 00:09:41
    home I had puzzled over the years about
  • 00:09:43
    whether there was any way to think and
  • 00:09:45
    do better in these
  • 00:09:47
    circumstances um I'm a cancer surgeon I
  • 00:09:50
    ought to know how to walk my way through
  • 00:09:52
    these decisions more
  • 00:09:54
    effectively and um and what I decided to
  • 00:09:58
    do was start going around and talking to
  • 00:10:00
    people who made it their expertise to do
  • 00:10:02
    this I ended up in addition to
  • 00:10:05
    interviewing a couple hundred patients
  • 00:10:08
    and family members about their
  • 00:10:09
    experiences with aging and Frailty and
  • 00:10:11
    serious illness also following scores of
  • 00:10:16
    different kinds of clinicians um
  • 00:10:19
    paliative care
  • 00:10:21
    physicians
  • 00:10:23
    geriatricians ICU doctors
  • 00:10:25
    oncologists nursing home workers hospice
  • 00:10:30
    AIDS and out of that came a picture of
  • 00:10:33
    you know possibly a different way of
  • 00:10:37
    thinking about what our task is in that
  • 00:10:40
    moment and so then I got another
  • 00:10:44
    call not unlike that one again I wasn't
  • 00:10:47
    the doctor it was the daughter my
  • 00:10:50
    daughter
  • 00:10:51
    Hunters um piano teacher and her husband
  • 00:10:57
    calling Martin her husband said pegs in
  • 00:11:01
    the hospital
  • 00:11:04
    again Peg batchelder was a neighbor she
  • 00:11:09
    um was in her early 60s and I knew she
  • 00:11:11
    had had a cancer before she had
  • 00:11:13
    explained it to me it was a rare pelvic
  • 00:11:16
    saroma involving the muscle of her
  • 00:11:18
    pelvis this soft tissue cancer that
  • 00:11:20
    doesn't arise very often but it's an
  • 00:11:22
    aggressive
  • 00:11:23
    cancer she
  • 00:11:25
    underwent an a radical operation that
  • 00:11:28
    removed a third of her pelvis and
  • 00:11:30
    replaced it with metal then underwent
  • 00:11:33
    chemotherapy and radiation she had
  • 00:11:36
    multiple complications put her in the
  • 00:11:38
    hospital for many weeks at one point
  • 00:11:41
    along the way she lost all of her
  • 00:11:43
    students and her teaching uh it was her
  • 00:11:46
    year in hell she
  • 00:11:48
    said but she came through it her
  • 00:11:52
    prognosis was good there was no evidence
  • 00:11:54
    of disease she resumed teaching she was
  • 00:11:56
    a very popular uh teacher she she had
  • 00:11:59
    this lovely gentle way about her while
  • 00:12:01
    being a stickler for you know practicing
  • 00:12:04
    and getting it done my daughter happily
  • 00:12:08
    joined up with teaching after her
  • 00:12:11
    treatment was over and um and for three
  • 00:12:16
    years Peg did great but then she
  • 00:12:20
    developed a leukemia like malignancy
  • 00:12:23
    that was a side effect of her
  • 00:12:25
    chemotherapy myo dysplastic syndrome
  • 00:12:29
    and with MDS she needed to undergo a new
  • 00:12:32
    kind of
  • 00:12:33
    chemotherapy she insisted that she'd
  • 00:12:35
    still be able to keep teaching and so
  • 00:12:37
    she did she taught all the way through
  • 00:12:39
    her treatments sometimes we'd get a call
  • 00:12:41
    that Hunter's lesson needed to be moved
  • 00:12:43
    to this date or that date because of her
  • 00:12:46
    um
  • 00:12:47
    appointments but um but that's the way
  • 00:12:50
    it went until for a couple straight
  • 00:12:53
    weeks her appointments were completely
  • 00:12:56
    cancelled and that was when Martin
  • 00:12:58
    called he was calling from the hospital
  • 00:13:00
    room where she was he put her on speaker
  • 00:13:03
    phone and she had this very quiet
  • 00:13:08
    voice long pauses between
  • 00:13:11
    sentences and what she explained was
  • 00:13:13
    that the treatment she was receiving
  • 00:13:16
    wasn't working
  • 00:13:18
    anymore her blood counts continued to
  • 00:13:20
    fall as they do with a lemia like
  • 00:13:23
    malignancy with the falling blood count
  • 00:13:26
    she began to develop fevers and an
  • 00:13:28
    infection
  • 00:13:30
    the infection led to their wanting to do
  • 00:13:32
    a CT scan to see where the source might
  • 00:13:35
    be the CT scan showed her original
  • 00:13:39
    cancer had come back in her pelvis and
  • 00:13:43
    spread through her
  • 00:13:44
    liver and now she was asking me the same
  • 00:13:48
    question that Callie's father had asked
  • 00:13:51
    me what should she
  • 00:13:55
    do and what strikes me is that this is
  • 00:13:58
    the question that is the source of a
  • 00:14:00
    national
  • 00:14:03
    debate what do we all think she should
  • 00:14:07
    do should she push for
  • 00:14:11
    whatever opportunity there might be you
  • 00:14:14
    know there was no conventional
  • 00:14:16
    chemotherapy I asked her what were the
  • 00:14:17
    doctors saying that she could do and
  • 00:14:19
    they said she said not much they were
  • 00:14:21
    giving her blood
  • 00:14:23
    transfusions they were giving her um
  • 00:14:27
    steroids for the tumor fevers pain
  • 00:14:30
    medication but they said there was no
  • 00:14:32
    conventional chemotherapy option and so
  • 00:14:35
    what she was trying to think through is
  • 00:14:36
    does she push for an experimental
  • 00:14:38
    therapy should she push for you know
  • 00:14:41
    there's got to be something that you can
  • 00:14:42
    do and there's always something we can
  • 00:14:44
    do there's always something that we can
  • 00:14:46
    offer so should she try for that or
  • 00:14:50
    should she as they
  • 00:14:52
    offered sign up for hospice and give
  • 00:14:56
    up they said we can keep you comfortable
  • 00:15:02
    and that option made her
  • 00:15:05
    angry just be just be comfortable what
  • 00:15:11
    before now what struck
  • 00:15:14
    me was that um meeting with
  • 00:15:18
    the hospice workers meeting with the
  • 00:15:23
    different kinds of people who took care
  • 00:15:25
    of folks along the way
  • 00:15:29
    that they had certain lessons that I had
  • 00:15:31
    not appreciated had not
  • 00:15:36
    understood and one of the fundamental
  • 00:15:39
    ones was that um we have failed to
  • 00:15:43
    recognize in medicine and society that
  • 00:15:46
    people have priorities besides just
  • 00:15:49
    living
  • 00:15:52
    longer that they have
  • 00:15:54
    certain aims and
  • 00:15:57
    goals for example
  • 00:15:59
    for some people it's really important
  • 00:16:02
    that we not sacrifice their cognitive
  • 00:16:04
    capabilities in the course of care or
  • 00:16:08
    that they want to be
  • 00:16:09
    home more than they want to be in the
  • 00:16:12
    hospital for other people that you know
  • 00:16:15
    they might be willing to go through it
  • 00:16:17
    all whatever we might throw at them in
  • 00:16:19
    order to get to a wedding six months
  • 00:16:22
    from
  • 00:16:23
    now or that they just want to be able to
  • 00:16:26
    walk their dog and that's really
  • 00:16:29
    important to them my father was
  • 00:16:31
    diagnosed in the course of researching
  • 00:16:33
    this book with a brain tumor in his
  • 00:16:35
    brain stem and in his spinal cord and we
  • 00:16:39
    didn't know when but we knew it would
  • 00:16:42
    progress to cause him to become
  • 00:16:44
    quadriplegic and then die it was not a
  • 00:16:46
    curable tumor very slow
  • 00:16:48
    growing it raised all kinds of questions
  • 00:16:52
    you know took about four years to take
  • 00:16:53
    his life so when he was diagnosed was he
  • 00:16:56
    dying
  • 00:17:01
    were there aims he could pursue along
  • 00:17:03
    the
  • 00:17:04
    way even though it was not
  • 00:17:06
    curable and how do we fit in the kinds
  • 00:17:09
    of options that he had in front of him
  • 00:17:12
    surgery radiation therapy nine different
  • 00:17:15
    chemotherapy
  • 00:17:16
    options all with sort of
  • 00:17:20
    unclear
  • 00:17:22
    um with with a set of known risks and
  • 00:17:26
    unclear benefits though there were def
  • 00:17:28
    definely some that you know were held
  • 00:17:31
    that could be held out before
  • 00:17:34
    us what the people who are really good
  • 00:17:36
    of these conversations helped elicit and
  • 00:17:38
    helped me understand is that um that
  • 00:17:42
    understanding people's priorities can
  • 00:17:44
    help guide what you're actually fighting
  • 00:17:47
    for and that's where the second lesson
  • 00:17:49
    came in which is that the evidence
  • 00:17:53
    indicates and there's a very technically
  • 00:17:55
    complex trials to show this that the
  • 00:17:58
    most most effective and reliable way to
  • 00:18:00
    find out what people's priorities are is
  • 00:18:03
    to
  • 00:18:07
    ask and we don't
  • 00:18:11
    ask less than a third of patients for
  • 00:18:14
    example in one study of seven different
  • 00:18:16
    Cancer
  • 00:18:17
    Centers less than a third of patients
  • 00:18:19
    who are stage four on average in that
  • 00:18:22
    study they turned out to have only four
  • 00:18:24
    months to live on average only a third
  • 00:18:27
    ended up having a conversation with
  • 00:18:30
    their Physicians about their priorities
  • 00:18:33
    and goals for the end of their life or
  • 00:18:37
    for if their health began to
  • 00:18:40
    worsen and that group had strikingly
  • 00:18:43
    different results they were much less
  • 00:18:45
    likely to die in the hospital less
  • 00:18:47
    likely to die in the ICU they were more
  • 00:18:49
    likely to stop aggressive therapy
  • 00:18:52
    chemotherapy and other kinds of
  • 00:18:55
    treatment sooner they enrolled in
  • 00:18:57
    hospice earlier they had less suffering
  • 00:18:58
    at the end of life their family members
  • 00:19:01
    6 months after were less likely to have
  • 00:19:04
    PTSD symptoms and depressive
  • 00:19:08
    symptoms and then the fascinating thing
  • 00:19:10
    is followon Studies have since
  • 00:19:12
    shown that the patients did not live
  • 00:19:16
    shorter in fact in the best done trial
  • 00:19:19
    with stage four lung cancer patients
  • 00:19:21
    those who had early paliative care
  • 00:19:25
    discussions lived longer by 25%
  • 00:19:32
    and that possibility that what we were
  • 00:19:34
    doing out of inability to have these
  • 00:19:36
    conversations effectively and know what
  • 00:19:38
    words to use was that we were failing to
  • 00:19:43
    make decisions that actually served the
  • 00:19:46
    ultimate priorities and goals that
  • 00:19:48
    people have because we simply couldn't
  • 00:19:51
    have the conversations and couldn't
  • 00:19:53
    identify what those aims might be now
  • 00:19:55
    part of the difficulty in my mind was
  • 00:19:58
    all right so then what what am I
  • 00:19:59
    supposed to talk
  • 00:20:01
    about what is this
  • 00:20:04
    conversation so I would ask these
  • 00:20:07
    folks what um if I had a
  • 00:20:11
    checklist for what I'm supposed to do in
  • 00:20:13
    my office next week when this comes up
  • 00:20:16
    what would be on your
  • 00:20:18
    checklist and they
  • 00:20:20
    said cobbled together you know they
  • 00:20:23
    actually do kind of have a framework in
  • 00:20:24
    their minds number one is that you
  • 00:20:27
    should be able to have a conversation
  • 00:20:29
    where you are talking less than 50% of
  • 00:20:31
    the
  • 00:20:34
    time so I tried that I went to my clinic
  • 00:20:38
    I sat in front of the patients and I
  • 00:20:40
    realized I talk 90% of the
  • 00:20:44
    time I had lots of facts and
  • 00:20:47
    figures
  • 00:20:49
    information pros and cons about
  • 00:20:51
    different options just like Callie's
  • 00:20:54
    parents were offered here are the
  • 00:20:56
    options here's the details here's all
  • 00:20:58
    the information what do you want to
  • 00:21:02
    do when what people are looking for is
  • 00:21:04
    guidance but you can't offer guidance if
  • 00:21:07
    you don't understand something about who
  • 00:21:09
    you're talking to and you can't talk
  • 00:21:11
    less than 50% of the time if you don't
  • 00:21:13
    ask
  • 00:21:14
    questions and what they were really good
  • 00:21:16
    at I realized what the pal care doctors
  • 00:21:18
    and others were really good at is they
  • 00:21:20
    made a science of the conversation or at
  • 00:21:22
    least a skill of the conversation they
  • 00:21:23
    treated that conversation with kind of
  • 00:21:27
    exacting techn iCal breakdown and sense
  • 00:21:31
    of learning and practice that I was
  • 00:21:33
    bringing to how I do an
  • 00:21:36
    operation so on their checklist that
  • 00:21:39
    they suggested was some of the questions
  • 00:21:41
    that they'd learned to use along the
  • 00:21:44
    way so one was what do you understand
  • 00:21:48
    your condition or your health to be at
  • 00:21:51
    this point in
  • 00:21:53
    time what are your fears and your
  • 00:21:55
    worries for the future
  • 00:21:58
    what are your
  • 00:21:59
    goals if your health
  • 00:22:04
    worsens what kinds of outcomes are
  • 00:22:07
    unacceptable to
  • 00:22:09
    you and from that you suddenly
  • 00:22:12
    understood what they were willing to
  • 00:22:14
    sacrifice and what they were not willing
  • 00:22:16
    to
  • 00:22:17
    sacrifice what what you were trying to
  • 00:22:19
    save them for what kind of life was
  • 00:22:22
    worth living to them and then you can
  • 00:22:25
    make those options come to be but they
  • 00:22:27
    needed you to help make them come to be
  • 00:22:29
    and help guide them along the
  • 00:22:32
    way so this time when I got this call I
  • 00:22:37
    tried it I tried asking those
  • 00:22:40
    questions not everybody's able to answer
  • 00:22:42
    them but Peg
  • 00:22:44
    did I said so what's your understanding
  • 00:22:48
    now of your health
  • 00:22:50
    condition and she said I'm going to
  • 00:22:54
    die she said it flat out there's nothing
  • 00:22:58
    more that they seem to be able to do she
  • 00:23:01
    said it with anger in her
  • 00:23:03
    voice I said what are your goals then if
  • 00:23:07
    you feel time is
  • 00:23:09
    short and she said I I don't I don't
  • 00:23:12
    have any I can think
  • 00:23:15
    of I said well then what are your fears
  • 00:23:20
    what are your worries for the future and
  • 00:23:22
    she gave me a
  • 00:23:23
    litany she said she feared facing more
  • 00:23:26
    pain suffering the humiliation of losing
  • 00:23:29
    even more of her bodily control she'd
  • 00:23:31
    become incontinent for the last two
  • 00:23:32
    weeks she'd been in in bed in
  • 00:23:35
    pain unable to really move just
  • 00:23:39
    immobilized she said she feared dying in
  • 00:23:42
    the hospital she' just been there for
  • 00:23:44
    days getting worse and worse and
  • 00:23:51
    worse now the other thing I discovered
  • 00:23:53
    in walking around with different folks
  • 00:23:56
    visiting with hospice workers is that
  • 00:23:58
    they didn't see their role as helping
  • 00:24:01
    people give
  • 00:24:03
    up you know I had this image of hospice
  • 00:24:06
    I'd never actually seen hospice so my
  • 00:24:09
    image was of a black hooded nurse with
  • 00:24:11
    an IV morphine
  • 00:24:14
    drip and instead you know one nurse that
  • 00:24:17
    I spoke to said the way she saw her job
  • 00:24:20
    was not to let nature take its course
  • 00:24:23
    she said she saw her job as doing the
  • 00:24:26
    opposite of what medicine does medicine
  • 00:24:29
    sacrifices your time and quality of life
  • 00:24:31
    now for the sake of possible time in the
  • 00:24:36
    future but when people find that their
  • 00:24:39
    possible time is fading and their
  • 00:24:41
    quality of life is just getting
  • 00:24:44
    worse she felt her role was to use
  • 00:24:46
    medical capabilities to give people
  • 00:24:48
    their best possible day
  • 00:24:51
    now and so I said to Peg that what
  • 00:24:56
    hospice is might be about
  • 00:24:59
    not trying to give up but trying to
  • 00:25:01
    fight for something different than just
  • 00:25:03
    time that she might fight instead for
  • 00:25:07
    just having a good
  • 00:25:09
    day seemed like it been a while since
  • 00:25:11
    she'd had a good day she said yes yes it
  • 00:25:16
    has so I said would that be worth
  • 00:25:19
    fighting for would that be worth hoping
  • 00:25:21
    for just one good
  • 00:25:25
    day she's thought about it
  • 00:25:30
    couple days later Martin her husband had
  • 00:25:32
    persuaded her that that might be the
  • 00:25:34
    best goal and she went home on
  • 00:25:38
    hospice I had to break the news to my
  • 00:25:41
    daughter Hunter 13 years old a hard
  • 00:25:43
    conversation to have with her too I said
  • 00:25:46
    she wasn't going to be able to have
  • 00:25:48
    piano lessons anymore with Peg and we
  • 00:25:51
    said she was
  • 00:25:52
    dying she was struck really low she said
  • 00:25:56
    she wanted to see Peg
  • 00:25:59
    and I Saidi didn't think that was going
  • 00:26:00
    to be possible but a couple days later
  • 00:26:03
    Peg called her called us up herself and
  • 00:26:07
    she said if we were willing and if
  • 00:26:10
    hunter wanted to she would like to teach
  • 00:26:13
    her
  • 00:26:14
    again even though she was on hospice I
  • 00:26:17
    mean this was amazing to
  • 00:26:19
    me neither She nor I could have
  • 00:26:22
    conceived that such a even notion could
  • 00:26:26
    be possible
  • 00:26:28
    but when she went home on hospice she
  • 00:26:30
    met the hospice nurse her name was
  • 00:26:32
    Deborah and Deborah worked to have a
  • 00:26:36
    conversation that just said you know let
  • 00:26:38
    me understand a little bit about what is
  • 00:26:40
    most important to you right now in your
  • 00:26:42
    life and let's work to try to make that
  • 00:26:45
    possible well what was most important to
  • 00:26:47
    her at that time was just she was
  • 00:26:49
    miserable she was suffering and she
  • 00:26:50
    wanted the suffering to stop and so they
  • 00:26:53
    worked on that they brought a hospital
  • 00:26:56
    bed down to the first floor
  • 00:26:59
    so that she didn't have to climb stairs
  • 00:27:00
    and try to navigate it just to use a
  • 00:27:02
    bathroom put a portable commode at the
  • 00:27:04
    side of the bed worked out ways to have
  • 00:27:07
    a routine for bathing and dressing and
  • 00:27:10
    then they tinkered with her medications
  • 00:27:12
    for pain considerably increased her
  • 00:27:15
    morphine dose much higher than she'd
  • 00:27:17
    been on added a drug called
  • 00:27:21
    gabapentin and then they discovered that
  • 00:27:23
    if they gave her Ridin that helped
  • 00:27:25
    combat the stuper that she experienced
  • 00:27:27
    on this
  • 00:27:29
    and as her
  • 00:27:31
    anxieties plunged because her challenges
  • 00:27:34
    came under control she began to lift her
  • 00:27:38
    sights I think somebody in the position
  • 00:27:41
    that she was in in the hospital two
  • 00:27:43
    weeks in pain Inc
  • 00:27:46
    continent with nothing left to offer
  • 00:27:49
    except a life of being comfortable might
  • 00:27:51
    have chosen death With Dignity assisted
  • 00:27:55
    death and not known anything more might
  • 00:27:58
    have been
  • 00:28:01
    possible but once she lifted her sights
  • 00:28:03
    her husband Martin said to me she came
  • 00:28:05
    to a clear view of how she wanted to
  • 00:28:08
    live the rest of her days she was going
  • 00:28:10
    to be at home and she was going to
  • 00:28:13
    teach now that took planning and medical
  • 00:28:17
    expertise to make it possible the team
  • 00:28:19
    had to learn how to calibrate her meds
  • 00:28:21
    to give her just enough morphine that
  • 00:28:24
    the timing would allow her to be under
  • 00:28:26
    full pain control when the lesson came
  • 00:28:29
    but not so groggy that you would have
  • 00:28:31
    slurred speech and freak the kids
  • 00:28:36
    out and they found that sweet spot
  • 00:28:39
    Martin said that she was more Alive
  • 00:28:41
    running up to a lesson and for the days
  • 00:28:43
    after than he'd seen her in a long time
  • 00:28:47
    she had had no children her students
  • 00:28:50
    filled that place for her and she still
  • 00:28:52
    had some things that she wanted them to
  • 00:28:54
    know before she went she wanted to give
  • 00:28:57
    them her goodbyes and some parting
  • 00:29:03
    advice the
  • 00:29:06
    um when I saw her um I realized that
  • 00:29:11
    medicine had forgotten how vital such
  • 00:29:15
    matters can be to
  • 00:29:17
    people when we approach life's end or
  • 00:29:21
    are dealing with constrictions in the
  • 00:29:23
    quality of our life people want to still
  • 00:29:27
    participate in the world
  • 00:29:29
    they have a role they want to share
  • 00:29:31
    memories they want to pass on wisdoms
  • 00:29:33
    and keepsakes they want to connect with
  • 00:29:34
    loved ones they want to make some last
  • 00:29:37
    contributions to the world and that role
  • 00:29:41
    many people argue is among life's most
  • 00:29:45
    important one of the people who I think
  • 00:29:47
    had best articulated some of these ideas
  • 00:29:49
    was L is Linda Emanuel who is uh among
  • 00:29:53
    your
  • 00:29:54
    faculty and what she points out is that
  • 00:29:57
    having having this ability to um make
  • 00:30:00
    these kinds of contributions is an
  • 00:30:02
    essential part of how life achieves
  • 00:30:05
    meaning and we've not had a view in
  • 00:30:08
    Medicine of what might be important in
  • 00:30:10
    life we think of a good life as being a
  • 00:30:13
    healthy life but what happens when you
  • 00:30:16
    can't be healthy we have to have a view
  • 00:30:19
    of what a good life is and a good life
  • 00:30:22
    is one where you're able to express your
  • 00:30:24
    priorities one where you have certain
  • 00:30:26
    things that you live for that they're
  • 00:30:28
    larger than just
  • 00:30:31
    yourself everybody has these they're you
  • 00:30:35
    may live for your children you may live
  • 00:30:37
    for your country you may live for
  • 00:30:40
    certain ideals you may live for
  • 00:30:42
    God Peg lived for her
  • 00:30:47
    students and somebody somebody
  • 00:30:51
    understood
  • 00:30:52
    that my daughter had um well she lived
  • 00:30:56
    for six full weeks in my my mother my my
  • 00:30:59
    daughter Hunter had lessons for four of
  • 00:31:02
    those weeks and then there were two
  • 00:31:04
    final concerts one the last recital of
  • 00:31:08
    her the children that she taught and
  • 00:31:11
    then also a concert bringing together
  • 00:31:14
    former students from all over the
  • 00:31:15
    country to play for
  • 00:31:17
    her the music was played in her living
  • 00:31:21
    room her students played bronze and D'Or
  • 00:31:23
    jaac and chopan and Beethoven for her
  • 00:31:28
    and then a week after the last concert
  • 00:31:31
    she fell into
  • 00:31:32
    delirium and then a few days after that
  • 00:31:35
    died peacefully in her own
  • 00:31:38
    bed but for me my final remembrance of
  • 00:31:42
    Peg was from near the end of the
  • 00:31:44
    children's recital which was a few weeks
  • 00:31:46
    before
  • 00:31:47
    that after the children had all played
  • 00:31:49
    she took the kids aside one by one to
  • 00:31:53
    give them a personal gift and a few
  • 00:31:55
    words and I saw her when Hunter got her
  • 00:31:59
    turn to come
  • 00:32:01
    up she gave Hunter a book of music that
  • 00:32:04
    she'd picked out for her that she wanted
  • 00:32:06
    her to learn and to
  • 00:32:08
    keep and then she put her arm around her
  • 00:32:11
    and gave her one more
  • 00:32:12
    gift you're
  • 00:32:14
    special she said to her that was
  • 00:32:19
    something that she wanted all of her
  • 00:32:21
    children to
  • 00:32:24
    understand I think these are the
  • 00:32:26
    possibilities that we have missed out on
  • 00:32:30
    by having such a narrow Viewpoint of
  • 00:32:33
    what a life worth living is there's more
  • 00:32:36
    than just a healthy life we take it for
  • 00:32:39
    granted that of course my job is to keep
  • 00:32:41
    people healthy of course our system is
  • 00:32:44
    about keeping people
  • 00:32:45
    healthy but then we have no view of what
  • 00:32:48
    happens when they're not healthy about
  • 00:32:51
    what happens when they have to make
  • 00:32:53
    sacrifices in the course of care along
  • 00:32:55
    the way but I think we have a glimpse
  • 00:32:58
    through many of these other professions
  • 00:32:59
    of a medicine that begins to embrace the
  • 00:33:01
    idea that our job is really
  • 00:33:03
    wellbeing that's bigger than health it's
  • 00:33:07
    tied to the purposes people have and
  • 00:33:09
    helping them achieve them I think Peg
  • 00:33:12
    was just one example where what I began
  • 00:33:15
    to emerge with was a feeling of actually
  • 00:33:17
    being competent and finding that some of
  • 00:33:20
    my most satisfying medical
  • 00:33:22
    experiences and family experiences have
  • 00:33:25
    come from knowing what to do even when
  • 00:33:28
    we couldn't fix the
  • 00:33:30
    problem so for that I think many of you
  • 00:33:32
    I know are here who've contributed to
  • 00:33:35
    that
  • 00:33:36
    knowledge helped many of us learn and
  • 00:33:39
    have fought for a change that might make
  • 00:33:42
    a medicine that is um makes life worth
  • 00:33:47
    living our aim ultimately is not a good
  • 00:33:51
    death our aim is as good a life as
  • 00:33:54
    possible all the way to the very
  • 00:33:55
    end thank you
  • 00:33:58
    [Applause]
  • 00:34:13
    thank you very much for a wonderful
  • 00:34:15
    presentation and the floor is open for
  • 00:34:17
    questions or discussion
  • 00:34:24
    points that was a wonderful talk that
  • 00:34:27
    you gave thank thanks so much I I guess
  • 00:34:29
    I understand your point about uh caring
  • 00:34:32
    for patients and end of life is really
  • 00:34:33
    an art form in medicine and I'm
  • 00:34:36
    wondering if you see any
  • 00:34:38
    alternative such as using big data
  • 00:34:41
    analytics to predict uh death of
  • 00:34:43
    patients and if that can drive the type
  • 00:34:45
    of care that you provide to them or it
  • 00:34:47
    might be more of a you know certain
  • 00:34:50
    people fit into certain categories but
  • 00:34:52
    if that's a good approach considering
  • 00:34:54
    the uh expensive cost of end of Life
  • 00:34:56
    Care way that it goes in some places um
  • 00:35:00
    it's a great question um you know it's
  • 00:35:03
    I'm talking about very human U
  • 00:35:06
    connections and relationships making a
  • 00:35:08
    difference so how could data make any
  • 00:35:10
    kind of a difference and I think there's
  • 00:35:11
    a couple things along the way that we
  • 00:35:13
    found and I I don't end up writing it in
  • 00:35:15
    the book but we're trying to implement
  • 00:35:17
    some of these ideas at the Dana Farber
  • 00:35:19
    Cancer Institute where we've been able
  • 00:35:21
    to enroll the clinicians of the entire
  • 00:35:23
    Institute in a research trial we got 80%
  • 00:35:26
    participation of the clinicians
  • 00:35:28
    and it involves um a few elements number
  • 00:35:31
    one they agreed to be randomized and
  • 00:35:34
    half of them got training in being able
  • 00:35:36
    to take this kind of five questions
  • 00:35:38
    approach to um their patients that's a
  • 00:35:42
    distinct shift you know we've evolved
  • 00:35:45
    from the paternalistic doctor doctor
  • 00:35:47
    knows best doesn't tell you your options
  • 00:35:50
    may not even tell you your prognosis and
  • 00:35:52
    your diagnosis because hey you know I
  • 00:35:54
    don't want to we your pretty little
  • 00:35:55
    ahead about it um um to one where in the
  • 00:35:58
    70s and 80s we rebelled against the idea
  • 00:36:01
    that the doctor didn't tell you what
  • 00:36:02
    they were doing and why they were doing
  • 00:36:04
    it and what we moved to was the
  • 00:36:06
    informative doctor that gave
  • 00:36:08
    you um an understanding of all your
  • 00:36:10
    options and all your
  • 00:36:13
    information and one key element where we
  • 00:36:15
    still don't have nearly as use of
  • 00:36:18
    sufficient data is to personalize the
  • 00:36:21
    information about your condition to have
  • 00:36:23
    much more information that you can bring
  • 00:36:24
    to bear on discussing prognosis with
  • 00:36:26
    patients now the trouble with the
  • 00:36:28
    informative doctor is that that's not
  • 00:36:30
    sufficient however that the discussion
  • 00:36:34
    of a more accurate prognosis doesn't get
  • 00:36:37
    you past the idea that you're simply
  • 00:36:39
    giving lots and lots of options but no
  • 00:36:40
    guidance along the way and moving into
  • 00:36:42
    the counselor role is a critical
  • 00:36:45
    component so in this trial what we're
  • 00:36:47
    attempting to do is teach people how to
  • 00:36:50
    take that counselor role even very
  • 00:36:52
    senior clinicians who feel they know how
  • 00:36:54
    to do this very very well we give them a
  • 00:36:57
    two and a half hour training we have
  • 00:36:58
    them talk um give bad news and work
  • 00:37:02
    their way through a decision with a uh
  • 00:37:05
    patient actor using it going the way
  • 00:37:08
    they usually do and then trying it using
  • 00:37:10
    the questions approach and finding we're
  • 00:37:12
    getting enormous support 90% feeling
  • 00:37:15
    that their skills improved by the end of
  • 00:37:17
    it um and the net result is that uh The
  • 00:37:21
    Next Step along the way is that they
  • 00:37:23
    agree to then let us um comb through the
  • 00:37:27
    data to identify the patient's most at
  • 00:37:29
    risk of dying in the next six
  • 00:37:31
    months now we have a databased approach
  • 00:37:34
    that certain diagnoses can be at high
  • 00:37:36
    risk or kind of constellation of
  • 00:37:38
    conditions and we can predict which
  • 00:37:40
    patients are high risk it also turns out
  • 00:37:42
    to be equally powerful simply ask the
  • 00:37:44
    doctors who would you be
  • 00:37:47
    surprised if who would you actually be
  • 00:37:49
    who would you not be surprised to find
  • 00:37:51
    out that they died in the next
  • 00:37:54
    year and if you're not going to be you
  • 00:37:56
    don't know that they're going to die but
  • 00:37:58
    if you wouldn't be surprised those
  • 00:38:00
    should be people you have a conversation
  • 00:38:01
    with so using the data approach and
  • 00:38:04
    using that other approach we have um
  • 00:38:07
    made the second component which is uh
  • 00:38:09
    that we notify them when those patients
  • 00:38:11
    come to Clinic kind of asteris as the
  • 00:38:13
    name that these people should have a
  • 00:38:15
    conversation they don't have their
  • 00:38:17
    healthcare proxy don't have that
  • 00:38:18
    information and we find just two
  • 00:38:20
    triggers by email are sufficient to get
  • 00:38:23
    90% to have the conversation and now
  • 00:38:26
    we're tracking the outcomes for 400
  • 00:38:28
    patients and we'll see how that goes but
  • 00:38:31
    um the clinicians and the patients are
  • 00:38:33
    having more of these conversations and
  • 00:38:34
    we'll see whether that makes a
  • 00:38:36
    difference and I think some of those
  • 00:38:37
    mechanisms can be the way to do
  • 00:38:40
    it hi thank you very much um like you um
  • 00:38:44
    I did not get any training in end of
  • 00:38:45
    Life Care in medical school either U
  • 00:38:47
    monaa I live here in Chicago um so as
  • 00:38:51
    you move through airports now on your
  • 00:38:53
    book tour I'm wondering if you had the
  • 00:38:55
    opportunity to see the October 27th
  • 00:38:57
    issue of don't quote me it's either us
  • 00:38:59
    or people it it it made me stop and look
  • 00:39:03
    at it because the cover is I choose the
  • 00:39:06
    right to die is a woman she's I think
  • 00:39:08
    24y May 29 right lives in Oregon 29 and
  • 00:39:12
    she wants she's going to die in the next
  • 00:39:14
    two or three weeks before her Milestone
  • 00:39:17
    birthday um she can do this because
  • 00:39:19
    she's in Oregon and you could this
  • 00:39:21
    intractable brain tumor and that's why
  • 00:39:23
    she doesn't want to live anymore or go
  • 00:39:25
    through any more treatments um what do
  • 00:39:28
    you think of that possibility becoming
  • 00:39:30
    available throughout the United States
  • 00:39:32
    not just
  • 00:39:33
    Oregon um a couple of things and I have
  • 00:39:35
    complicated views on this so Britney
  • 00:39:37
    Maynard has announced you know she has
  • 00:39:39
    an advanced Leo blastoma terminal
  • 00:39:43
    Progressive brain cancer um and uh she
  • 00:39:48
    fears that um not inappropriately that
  • 00:39:51
    the suffering she will go through leave
  • 00:39:53
    her no other options that people won't
  • 00:39:56
    be there for her so she has said on
  • 00:39:58
    November 1st she's going to take her
  • 00:40:00
    life uh is Harold Pollock
  • 00:40:02
    here Harold there he is in the back
  • 00:40:05
    haral uh is here at the University of
  • 00:40:06
    Chicago and his writing on this case
  • 00:40:09
    actually is probably the most
  • 00:40:10
    influential in the way that I think
  • 00:40:11
    about it um number one uh I do think
  • 00:40:17
    that people who have unbearable
  • 00:40:18
    suffering deserve the right to be able
  • 00:40:22
    to hasten their own death if um that un
  • 00:40:25
    unbearable suffering is unavoidable that
  • 00:40:29
    um and I think we've shown that you can
  • 00:40:31
    develop systems that can safely identify
  • 00:40:34
    the patients who are most um uh
  • 00:40:36
    genuinely terminally ill with that kind
  • 00:40:38
    of unbearable suffering and not simply
  • 00:40:40
    depressed um and committing
  • 00:40:42
    suicide the only 1% or less of the
  • 00:40:46
    population in Washington Oregon choose
  • 00:40:47
    those options when they die and what's
  • 00:40:50
    interesting is only half of them end up
  • 00:40:51
    using the
  • 00:40:53
    prescription it's enough relief just to
  • 00:40:55
    know the option is there if the be the
  • 00:40:57
    suffering becomes
  • 00:40:59
    unbearable now that said I think the
  • 00:41:02
    second thing though is that every
  • 00:41:04
    patient who chooses that way is a sign
  • 00:41:07
    of our health system failure that we
  • 00:41:09
    failed to generate solutions to address
  • 00:41:12
    suffering this debate is unfolding not
  • 00:41:15
    just in the United States so in the
  • 00:41:16
    Netherlands was the first place to bring
  • 00:41:19
    this in and it's about 4% of the
  • 00:41:21
    population choosing this pathway out and
  • 00:41:24
    that's really disturbing to me
  • 00:41:27
    you know the Netherlands was the first
  • 00:41:28
    to develop youth in
  • 00:41:31
    Asia but the they were one of the last
  • 00:41:33
    to bring hospice and paliative Care in
  • 00:41:35
    in
  • 00:41:36
    Europe in India this debate is unfolding
  • 00:41:39
    and you are in a place where they don't
  • 00:41:42
    give narcotics very often to people with
  • 00:41:44
    terminal
  • 00:41:45
    cancer so imagine you're in unbearable
  • 00:41:48
    pain and all you can get is a Tylenol
  • 00:41:51
    and someone says well we can give you
  • 00:41:53
    assisted death a lot of people would
  • 00:41:56
    choose that
  • 00:41:57
    if there's nothing you were doing for
  • 00:41:59
    their suffering but that is a system
  • 00:42:01
    failure and while we should give the
  • 00:42:04
    right to relieve your suffering because
  • 00:42:06
    the system has failed you the system has
  • 00:42:07
    failed you and we should not consider
  • 00:42:10
    that the end but the beginning of it
  • 00:42:12
    that we have to assist with living and
  • 00:42:15
    with being able to make it possible to
  • 00:42:17
    not suffer at the end but in fact to um
  • 00:42:21
    perhaps even have moments like pegs
  • 00:42:23
    where you can express your priorities
  • 00:42:26
    the goals and things you're willing to
  • 00:42:27
    sacrifice for and enable you to be able
  • 00:42:30
    to do that to the extent
  • 00:42:33
    possible hi thank you that was a
  • 00:42:34
    wonderful talk uh I'm a general
  • 00:42:36
    internist and pediatrician here and I
  • 00:42:38
    have lots of older patients with
  • 00:42:40
    diabetes and other chronic illnesses and
  • 00:42:42
    it strikes me that some of the same
  • 00:42:44
    questions are very relevant for you know
  • 00:42:47
    especially people over 50 we're all
  • 00:42:49
    terminal and you know as we care for
  • 00:42:52
    people with chronic illnesses uh to what
  • 00:42:55
    extent are those same questions relevant
  • 00:42:57
    and useful in that setting so it's I
  • 00:43:00
    think they're hugely relevant um and I
  • 00:43:03
    didn't expect that when I was
  • 00:43:04
    investigating the book um but once you
  • 00:43:07
    realize we're not asking people about
  • 00:43:08
    their priorities at end of life you
  • 00:43:10
    realize that people have priorities
  • 00:43:12
    besides just living longer throughout
  • 00:43:13
    their lives and that when those
  • 00:43:15
    abilities begin to become constrained by
  • 00:43:17
    chronic illness or by Frailty that those
  • 00:43:20
    goals need to be known by the people
  • 00:43:22
    helping them try to live as well and
  • 00:43:24
    it's infected I think that lack that
  • 00:43:27
    absence has infected many of our
  • 00:43:28
    institutions for the care of people
  • 00:43:30
    dealing with disability or Frailty um if
  • 00:43:33
    you go to and then so my book ends up
  • 00:43:35
    being two-thirds about not even end of
  • 00:43:38
    life at all um i' talk about the
  • 00:43:40
    development of the nursing home industry
  • 00:43:42
    and how these are places that above all
  • 00:43:43
    sell themselves on the idea that you're
  • 00:43:45
    going to be safe they were created
  • 00:43:47
    really as a way to empty hospital beds
  • 00:43:49
    with people who weren't getting better
  • 00:43:51
    and the idea was that they'd go to these
  • 00:43:53
    places to be nursed back to health never
  • 00:43:57
    quite acknowledging that that wasn't
  • 00:43:58
    going to happen and so these are places
  • 00:44:01
    that you know think a lot about your
  • 00:44:03
    safety you have to take your medicines
  • 00:44:06
    on time you have to uh you can't have
  • 00:44:09
    alcohol you know you can't have a drink
  • 00:44:11
    when you go in to these places you um uh
  • 00:44:16
    if you're at the slightest risk of
  • 00:44:17
    falling you're put into a
  • 00:44:19
    wheelchair and not a lot of thinking
  • 00:44:21
    about what your goals might be this is
  • 00:44:23
    why people hate going into these places
  • 00:44:26
    no one is working to make you stay
  • 00:44:27
    connected to your friends or to continue
  • 00:44:30
    to take care of the dog that you love oh
  • 00:44:32
    no dog allowed um can't even bring your
  • 00:44:35
    own
  • 00:44:36
    Furniture um and I describe some places
  • 00:44:39
    that are pioneering approaches that ask
  • 00:44:42
    these questions as part of care I think
  • 00:44:45
    it can be part of chronic illness it can
  • 00:44:47
    be part of how we redesign places to
  • 00:44:49
    become very uh very different and very
  • 00:44:53
    interesting uh thanks L I appreciate
  • 00:44:55
    your talk um um my name is Dan Broner
  • 00:44:58
    I'm in geriatrics and at the Ethics
  • 00:45:00
    Center here and um to to say that what
  • 00:45:04
    you're saying is is not exactly brand
  • 00:45:06
    new is you know right yeah but you know
  • 00:45:09
    I think part of the issue here I
  • 00:45:11
    specialize in you know not brand new
  • 00:45:13
    like no the checklist was only what a
  • 00:45:16
    century old say brilliantly um I think
  • 00:45:20
    part of the issue here um I mean I could
  • 00:45:22
    speak to a lot of things you said I
  • 00:45:24
    think part of the problem with the
  • 00:45:25
    conversation and checklist as you
  • 00:45:28
    probably saw was that you really a
  • 00:45:31
    checklist may get in the way of
  • 00:45:32
    conversation right because it sort of
  • 00:45:34
    directs it and it doesn't allow the
  • 00:45:36
    person who you're talking to you know it
  • 00:45:39
    can't uh predict the latitude that
  • 00:45:41
    you'll need I think the the interesting
  • 00:45:43
    thing about end of life care for me now
  • 00:45:45
    is the way um and I think Deb spoke to
  • 00:45:48
    this a little bit is the way it sort of
  • 00:45:50
    shift things shift so dramatically at
  • 00:45:52
    that moment that we finally admit it
  • 00:45:55
    becomes so obvious we have nothing left
  • 00:45:57
    to give you now let's talk about your
  • 00:45:59
    goals whereas I think as that pointed
  • 00:46:03
    out you know there's lots of instances
  • 00:46:05
    before people are about to die that we
  • 00:46:07
    don't have that much to offer you know
  • 00:46:09
    but we still offer it and it's this sort
  • 00:46:11
    of default model of medicine um I call
  • 00:46:15
    it the cardiac arrest Paradigm because I
  • 00:46:17
    think it really started in the 60s with
  • 00:46:19
    the default application of CPR and I
  • 00:46:22
    think that sort of engendered a way of
  • 00:46:24
    dealing with people in which we give
  • 00:46:26
    them the option
  • 00:46:27
    whether or not we think it's going to
  • 00:46:28
    help them or not because this is the
  • 00:46:31
    list of options that we've been told to
  • 00:46:32
    offer and I think you know to really
  • 00:46:35
    improve medical care at this time I
  • 00:46:37
    think what we need to do is drastically
  • 00:46:40
    uh you know move beyond that Paradigm I
  • 00:46:43
    I couldn't agree more I think though
  • 00:46:44
    that the the question and the where
  • 00:46:46
    people become alarmed is when you move
  • 00:46:48
    beyond that Paradigm what are you moving
  • 00:46:49
    beyond that Paradigm for what what
  • 00:46:51
    becomes the goal and if the goal is
  • 00:46:53
    we're going to save some more money
  • 00:46:55
    that's death panels and that frightens
  • 00:46:58
    people to death obviously but the goal
  • 00:47:00
    you absolutely but I think the thing
  • 00:47:02
    that I learned from hanging out with a
  • 00:47:03
    geriatrician for example in my hospital
  • 00:47:06
    was that it's reframing what we're
  • 00:47:08
    fighting for that we're not fighting for
  • 00:47:12
    more time regardless of the consequences
  • 00:47:14
    but F fighting for the kind of life that
  • 00:47:16
    you want to live for within the
  • 00:47:18
    constraints that you face yes if we can
  • 00:47:20
    lift those constraints away great but
  • 00:47:22
    let's not sacrifice what you're alive
  • 00:47:24
    for in the first place and so I was
  • 00:47:27
    struck meeting with the gerit trist he
  • 00:47:30
    saw a new patient in her early 80s um
  • 00:47:32
    and for the first time that was that was
  • 00:47:34
    my first time in a clinic and I was
  • 00:47:35
    thinking through how I would have looked
  • 00:47:37
    at this woman who had a new lung nodule
  • 00:47:40
    had high blood pressure that um uh still
  • 00:47:43
    was not entirely in control had um
  • 00:47:46
    complained around about uh back pain and
  • 00:47:49
    my thoughts were we either should be
  • 00:47:51
    attacking the back pain or we should be
  • 00:47:53
    attacking that lung nodule that might be
  • 00:47:55
    the biggest threat to her because she
  • 00:47:56
    was very mentally intact living
  • 00:47:57
    independently at home and what the
  • 00:47:59
    geriatrician did was spend an enor
  • 00:48:01
    amount of time looking at her
  • 00:48:04
    feet and then stepped back and said the
  • 00:48:07
    biggest threat to your life and the way
  • 00:48:09
    of life you have because she said the
  • 00:48:12
    most important thing to her was being
  • 00:48:13
    able to be independent in that apart in
  • 00:48:16
    that apartment she had gardening and
  • 00:48:18
    taking care of her dog and listening to
  • 00:48:20
    the Red Sox every night during baseball
  • 00:48:23
    season the biggest goal was to keep that
  • 00:48:26
    preserved and what he saw was that she
  • 00:48:28
    had the three major risk factors for a
  • 00:48:30
    fall in the next six months she was on
  • 00:48:32
    five or more medications she had foot
  • 00:48:35
    problems that he discovered and that she
  • 00:48:37
    had some weakness issues in being able
  • 00:48:39
    to get up from the chair now I didn't
  • 00:48:43
    know those risk factors we don't teach
  • 00:48:45
    those generally to
  • 00:48:47
    anybody and then you add in that he
  • 00:48:49
    could prevent those from happening that
  • 00:48:52
    he could take action and fight for that
  • 00:48:54
    time she had even though he wasn't
  • 00:48:55
    fighting for longer life he was fighting
  • 00:48:57
    for better life and a year later when I
  • 00:48:59
    saw her she'd been having Falls at home
  • 00:49:02
    prior to that appointment and after a
  • 00:49:04
    sequence of things that he did she had
  • 00:49:07
    no more Falls the rest of the year and
  • 00:49:08
    was still living independently on her
  • 00:49:10
    own in that place and that that's that
  • 00:49:13
    kind of Victory helps people understand
  • 00:49:16
    what it is that you do and your
  • 00:49:17
    colleagues do and making it possible to
  • 00:49:21
    pursue goals and use our capabilities
  • 00:49:23
    not blindly with no idea of what a good
  • 00:49:25
    life is but exactly towards people see
  • 00:49:28
    as a good life for them so before I hand
  • 00:49:31
    the microphone to the next question
  • 00:49:33
    asker I'd like to know if you have any
  • 00:49:35
    experience with parents of children who
  • 00:49:37
    are dying and uh maybe talk a little bit
  • 00:49:39
    about that since it's pediatric R rounds
  • 00:49:42
    yeah well the only thing I'd say is that
  • 00:49:44
    um uh so I
  • 00:49:46
    don't take care of pediat Pediatric Care
  • 00:49:49
    myself but it's been the this incredible
  • 00:49:52
    movement for Pediatric paliative Care
  • 00:49:54
    that is blossoming out of the field of
  • 00:49:56
    of care P of care really started about
  • 00:49:58
    people with terminal cancer and Baler
  • 00:50:01
    Mount at McGill in the 1960s but in the
  • 00:50:04
    last 20 years has become this incredible
  • 00:50:06
    movement around recognizing that some of
  • 00:50:09
    the people who that that in fact the
  • 00:50:10
    people who often suffer the most at the
  • 00:50:13
    end are those the younger that the
  • 00:50:15
    younger the patient the more we inflict
  • 00:50:18
    out of a out of a feeling that it's
  • 00:50:21
    giving up to acknowledge what's
  • 00:50:23
    happening and I think there's been this
  • 00:50:25
    blossoming of of this Pediatric
  • 00:50:27
    paliative Care Community including
  • 00:50:28
    people here that have been able to bring
  • 00:50:31
    these same skills to Bear these are
  • 00:50:34
    still the same skills that and questions
  • 00:50:36
    that you end up asking the parents and I
  • 00:50:39
    wish I'd also asked cie who at 12 years
  • 00:50:42
    old could tell us exactly what she
  • 00:50:44
    feared and what she worried about and
  • 00:50:47
    what her hopes might be if her health
  • 00:50:51
    was was not going to do any
  • 00:50:53
    better hi I'm an internist and a
  • 00:50:56
    pediatrician and and I really appreciate
  • 00:50:58
    the talk that you or the point that you
  • 00:51:01
    made about listening and asking what
  • 00:51:04
    people's priorities are and I think the
  • 00:51:06
    one side sometimes that gets lost is
  • 00:51:08
    that some people's um life issues are
  • 00:51:11
    still very unknown and unpredictable and
  • 00:51:14
    courses can be very variable and so the
  • 00:51:16
    one thing I still find lacking even
  • 00:51:18
    doing everything that you said is the
  • 00:51:21
    practitioner that gives somebody hope
  • 00:51:23
    and so I don't want hope to be lost in
  • 00:51:26
    all of this and I don't mean false hope
  • 00:51:28
    I mean real hope and I do think
  • 00:51:30
    sometimes that gets overlooked
  • 00:51:31
    especially among practitioners that may
  • 00:51:34
    be deal with a lot of end of life issues
  • 00:51:37
    yeah no it's a it's a um it's a struggle
  • 00:51:40
    that I find you know I'm a surgeon so I
  • 00:51:43
    go in with great optimism with everybody
  • 00:51:47
    and they're looking for that optimism
  • 00:51:48
    and Confidence from me that um what
  • 00:51:52
    we're aiming for will be the whole
  • 00:51:55
    lottery ticket
  • 00:51:57
    that we will have cured problem and
  • 00:52:00
    finding the language and the words that
  • 00:52:02
    to encapsulate the idea that um we have
  • 00:52:07
    uncertainty and it's possible that
  • 00:52:09
    really great things can happen but that
  • 00:52:11
    we're also prepared for the possibility
  • 00:52:13
    that it doesn't and that we're um that
  • 00:52:18
    at no point are we giving up on them
  • 00:52:20
    that we're simply trying to work out
  • 00:52:22
    what are we fighting for with each step
  • 00:52:23
    along the way one of the things that's
  • 00:52:25
    cleared that I learned from these kinds
  • 00:52:27
    of folks is that we're this is a this is
  • 00:52:30
    not about getting patients to come to an
  • 00:52:33
    epiphany this is about a process in a
  • 00:52:36
    series of discussions because people's
  • 00:52:38
    views change as time goes on um what you
  • 00:52:42
    will tolerate what you will be willing
  • 00:52:44
    to accept can can shift as you have
  • 00:52:47
    experiences of some of these things um
  • 00:52:49
    and as you find that there's um more
  • 00:52:51
    Joys and possibilities within Narrows
  • 00:52:53
    constraints than you sometimes expect
  • 00:52:55
    there to be
  • 00:52:57
    and so we have to make room not only for
  • 00:52:59
    these to be conversations we have at all
  • 00:53:02
    but to be able to revisit them as
  • 00:53:05
    conditions change um and then we have to
  • 00:53:08
    add in the picture of the family because
  • 00:53:10
    70% of the time people come to the end
  • 00:53:13
    with somebody else needing to make the
  • 00:53:14
    decisions and being able to understand
  • 00:53:17
    what people's own views of a good life
  • 00:53:20
    are are really important what I found as
  • 00:53:23
    I explored moving this way is that it
  • 00:53:26
    becomes about Hope because it becomes
  • 00:53:28
    much more about what do you hope for
  • 00:53:30
    what kind of life are you living for
  • 00:53:32
    what is the reason that you're here and
  • 00:53:34
    when you're talking about someone who
  • 00:53:35
    has a chronic illness like she was
  • 00:53:36
    talking about or just needing to go
  • 00:53:39
    through you know a difficult operation
  • 00:53:41
    that I've ever reason to think they're
  • 00:53:43
    going to make it through but I still
  • 00:53:44
    want to know as I'm going through it you
  • 00:53:46
    know what's important to
  • 00:53:48
    you um and I think those our
  • 00:53:51
    capabilities that that's part of the art
  • 00:53:53
    that we're in need of recultivated
  • 00:53:59
    yeah um you've been very eloquent about
  • 00:54:04
    sharing the time and the relationship
  • 00:54:07
    aspect of medicine that's involved in
  • 00:54:11
    this process and there are many systems
  • 00:54:15
    variables that really interfere with
  • 00:54:18
    that and one of the things in practicing
  • 00:54:22
    with children with
  • 00:54:24
    disability are issue isues of trust and
  • 00:54:28
    issues of Abandonment and there are
  • 00:54:31
    families who have had very negative
  • 00:54:36
    experiences that really have sabotaged
  • 00:54:39
    their trust because the communication
  • 00:54:42
    has less been ideal and at the same time
  • 00:54:47
    they need the supports are there any
  • 00:54:50
    suggestions that you have so that it's
  • 00:54:55
    the family feere of Abandonment isn't
  • 00:54:58
    exacerbated in these
  • 00:55:01
    situations um my sense of it and this is
  • 00:55:06
    my sort of sense from talking to all of
  • 00:55:09
    these different kinds of patients is
  • 00:55:11
    that the abandonment that most feel is
  • 00:55:13
    that when things aren't working the way
  • 00:55:16
    that the doctors had hoped you know
  • 00:55:18
    invariably you try step one and you try
  • 00:55:20
    step two and then when it's not working
  • 00:55:22
    that's when we tend to pull away and
  • 00:55:24
    offer less and less and and feel less
  • 00:55:26
    comfortable that we know what we're
  • 00:55:28
    really fighting for um and so I think
  • 00:55:31
    the Striking thing to me is that I felt
  • 00:55:34
    that I'm able to offer some competence
  • 00:55:36
    and capability even when those moments
  • 00:55:39
    come because we've identified what we
  • 00:55:41
    are in fact fighting for even if it
  • 00:55:43
    means that sometimes I'm recommending we
  • 00:55:45
    not do the operation that I suggest but
  • 00:55:48
    I tell the story of um uh a patient of
  • 00:55:51
    mine who had a malignant ovarian cancer
  • 00:55:53
    that had caused a bowel obstruction and
  • 00:55:56
    um when we understood what her
  • 00:55:58
    priorities might be you know one is I've
  • 00:56:01
    gone in often on these cases um and just
  • 00:56:05
    tried to find a way to reopen the bowel
  • 00:56:08
    bypass it give them a colostomy
  • 00:56:10
    something to allow them to eat again and
  • 00:56:12
    people will be absolutely willing to eat
  • 00:56:15
    um rather than just die but um very
  • 00:56:19
    often I just make matters worse they
  • 00:56:21
    have leaking stool we have fistly we
  • 00:56:24
    it's it it it's a mess
  • 00:56:27
    um and what this patient helped me
  • 00:56:28
    understand was yes we're going to go to
  • 00:56:30
    the operating room I want that chance to
  • 00:56:32
    eat but I don't want you taking risky
  • 00:56:35
    chances that would leave me in the
  • 00:56:37
    hospital uh in the course of doing so
  • 00:56:40
    and so when I got in and I found the bow
  • 00:56:42
    caked with tumor I understood exactly
  • 00:56:44
    where she drew the line and so when I
  • 00:56:48
    didn't when I didn't end up being able
  • 00:56:52
    to bypass and just put in tubes and let
  • 00:56:54
    her um have relief of ma but she passed
  • 00:56:57
    away a couple weeks later that she
  • 00:56:59
    didn't feel abandoned that we that we
  • 00:57:02
    were still recognizing what she was
  • 00:57:03
    fighting for even if it couldn't be more
  • 00:57:06
    time and I think that's the trick along
  • 00:57:08
    the way the abandonment comes when the
  • 00:57:11
    doctor tends to walk away feeling I've
  • 00:57:13
    got nothing more to offer and we
  • 00:57:15
    generally
  • 00:57:16
    do well thank you so much Dr Gand for a
  • 00:57:19
    fantastic talk
  • 00:57:39
    the department of Pediatrics would also
  • 00:57:40
    like to thank our great sponsors Dr
  • 00:57:42
    seagler the Bucks bomb Institute and the
  • 00:57:44
    mlan center David aarod Steve Edwards
  • 00:57:47
    here at the Institute of politics for
  • 00:57:49
    giving us this opportunity for such a
  • 00:57:51
    wonderful talk
タグ
  • end-of-life care
  • palliative care
  • patient priorities
  • quality of life
  • mortality
  • healthcare communication
  • Atul Gawande
  • medical ethics
  • patient-centered care
  • chronic illness