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.

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

00:57:52

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

Zusammenfassung

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.

Mitbringsel

🩺 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

Zeitleiste

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.

Mind Map

Video-Fragen und Antworten

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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Untertitel

Automatisches Blättern:

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