I want to talk with you about setting goals that are based on your values I
goals that are based on your values I
goals that are based on your values I suspect that when you hear that you
suspect that when you hear that you
suspect that when you hear that you think we’re gonna talk about goals for
think we’re gonna talk about goals for
think we’re gonna talk about goals for how to live your life we’re not we’re
how to live your life we’re not we’re
how to live your life we’re not we’re actually going to talk about goals for
actually going to talk about goals for
actually going to talk about goals for the end of life that’s not a
the end of life that’s not a
the end of life that’s not a conversation anybody wants to have it’s
conversation anybody wants to have it’s
conversation anybody wants to have it’s frightening it’s depressing nobody wants
frightening it’s depressing nobody wants
frightening it’s depressing nobody wants to talk about death doctors don’t want
to talk about death doctors don’t want
to talk about death doctors don’t want to talk about death either that’s one of
to talk about death either that’s one of
to talk about death either that’s one of the reasons why the first explicit
the reasons why the first explicit
the reasons why the first explicit conversation I ever had about death
conversation I ever had about death
conversation I ever had about death happened at 10:30 at night in the
happened at 10:30 at night in the
happened at 10:30 at night in the waiting room of the intensive care unit
waiting room of the intensive care unit
waiting room of the intensive care unit about three weeks after I graduated from
about three weeks after I graduated from
about three weeks after I graduated from medical school I’d been sent down there
medical school I’d been sent down there
medical school I’d been sent down there to talk to a family I’d never met about
to talk to a family I’d never met about
to talk to a family I’d never met about their mother who was a patient in that
their mother who was a patient in that
their mother who was a patient in that intensive care unit she was dying they
intensive care unit she was dying they
intensive care unit she was dying they didn’t know that and it was my job to
didn’t know that and it was my job to
didn’t know that and it was my job to tell them I walked in the room I
tell them I walked in the room I
tell them I walked in the room I introduced myself and I said we need to
introduced myself and I said we need to
introduced myself and I said we need to talk about the ventilator that’s helping
talk about the ventilator that’s helping
talk about the ventilator that’s helping your mother breathe because it’s really
your mother breathe because it’s really
your mother breathe because it’s really not effective for her anymore and she’s
not effective for her anymore and she’s
not effective for her anymore and she’s going to die I remember that
going to die I remember that
going to die I remember that conversation with horror and I can only
conversation with horror and I can only
conversation with horror and I can only imagine how that family remembers it
imagine how that family remembers it
imagine how that family remembers it I’ve spent the rest of my career the
I’ve spent the rest of my career the
I’ve spent the rest of my career the last 30 years trying to learn how to do
last 30 years trying to learn how to do
last 30 years trying to learn how to do this better and to teach other people to
this better and to teach other people to
this better and to teach other people to do it better
do it better
do it better as well we know we need to do it better
as well we know we need to do it better
as well we know we need to do it better because when we ask we know we’re not
because when we ask we know we’re not
because when we ask we know we’re not serving people in the way that they want
serving people in the way that they want
serving people in the way that they want to be served repeated surveys have told
to be served repeated surveys have told
to be served repeated surveys have told us that the majority of Americans given
us that the majority of Americans given
us that the majority of Americans given a choice want to die at home comfortably
a choice want to die at home comfortably
a choice want to die at home comfortably with a minimum of medical intervention
with a minimum of medical intervention
with a minimum of medical intervention but in 2014 65% of people who died in
but in 2014 65% of people who died in
but in 2014 65% of people who died in the United States died in care either in
the United States died in care either in
the United States died in care either in a hospital or a nursing home and 10 to
a hospital or a nursing home and 10 to
a hospital or a nursing home and 10 to 20 percent of those died in the
20 percent of those died in the
20 percent of those died in the intensive care unit we’re not doing this
intensive care unit we’re not doing this
intensive care unit we’re not doing this very well over the years one of the
very well over the years one of the
very well over the years one of the things I’ve learned is that we need to
things I’ve learned is that we need to
things I’ve learned is that we need to do it somewhere
do it somewhere
do it somewhere else other than the intensive-care
else other than the intensive-care
else other than the intensive-care waiting room we need to do it well
waiting room we need to do it well
waiting room we need to do it well before anybody gets into the intensive
before anybody gets into the intensive
before anybody gets into the intensive care unit we need to plan ahead thanks
care unit we need to plan ahead thanks
care unit we need to plan ahead thanks to the work of Bob Arnold and Tim quill
to the work of Bob Arnold and Tim quill
to the work of Bob Arnold and Tim quill I’ve also learned that we need to start
I’ve also learned that we need to start
I’ve also learned that we need to start the conversation differently than we
the conversation differently than we
the conversation differently than we usually do
usually do
usually do ideally should be an opportunity to sit
ideally should be an opportunity to sit
ideally should be an opportunity to sit down in an examining room or a
down in an examining room or a
down in an examining room or a consultation room or your own home with
consultation room or your own home with
consultation room or your own home with a doctor or somebody who can help you
a doctor or somebody who can help you
a doctor or somebody who can help you through this and when I do this I start
through this and when I do this I start
through this and when I do this I start out by saying tell me about yourself
out by saying tell me about yourself
out by saying tell me about yourself what’s important to you what does a
what’s important to you what does a
what’s important to you what does a really good day look like what are your
really good day look like what are your
really good day look like what are your goals for your medical care what I’m
goals for your medical care what I’m
goals for your medical care what I’m really asking what I really want to know
really asking what I really want to know
really asking what I really want to know is what does quality of life mean to you
is what does quality of life mean to you
is what does quality of life mean to you because that answer is going to be
because that answer is going to be
because that answer is going to be different for everybody some people feel
different for everybody some people feel
different for everybody some people feel that in order to have an acceptable
that in order to have an acceptable
that in order to have an acceptable quality of life they have to be able to
quality of life they have to be able to
quality of life they have to be able to move around independently other people
move around independently other people
move around independently other people will say if I can communicate if I can
will say if I can communicate if I can
will say if I can communicate if I can have a meaningful community interaction
have a meaningful community interaction
have a meaningful community interaction with my friends and family then I don’t
with my friends and family then I don’t
with my friends and family then I don’t care if I need assistance to move around
care if I need assistance to move around
care if I need assistance to move around that’s that’s acceptable to me it’s
that’s that’s acceptable to me it’s
that’s that’s acceptable to me it’s going it’s very individual it’s
going it’s very individual it’s
going it’s very individual it’s different for everybody and that’s what
different for everybody and that’s what
different for everybody and that’s what I need to know and once I figured that
I need to know and once I figured that
I need to know and once I figured that out then I can say okay now let’s talk
out then I can say okay now let’s talk
out then I can say okay now let’s talk about medical technology and I’ll tell
about medical technology and I’ll tell
about medical technology and I’ll tell you what technology will help you meet
you what technology will help you meet
you what technology will help you meet those goals and what technology we
those goals and what technology we
those goals and what technology we really should put aside because it’s not
really should put aside because it’s not
really should put aside because it’s not gonna get you where you want to go if we
gonna get you where you want to go if we
gonna get you where you want to go if we do that planning ahead then when the
do that planning ahead then when the
do that planning ahead then when the crisis comes we can make the right
crisis comes we can make the right
crisis comes we can make the right choices if we do that planning ahead we
choices if we do that planning ahead we
choices if we do that planning ahead we have to put it in writing it’s essential
have to put it in writing it’s essential
have to put it in writing it’s essential to put it in writing for a number of
to put it in writing for a number of
to put it in writing for a number of reasons
reasons
reasons one is that it provides guidance to your
one is that it provides guidance to your
one is that it provides guidance to your medical team to the people who are
medical team to the people who are
medical team to the people who are taking care of you when you are
taking care of you when you are
taking care of you when you are seriously ill about both what you want
seriously ill about both what you want
seriously ill about both what you want done and
done and
done and who you want to speak for you if you’re
who you want to speak for you if you’re
who you want to speak for you if you’re unable to speak for yourself
unable to speak for yourself
unable to speak for yourself putting it in writing means creating
putting it in writing means creating
putting it in writing means creating both a living will and naming a
both a living will and naming a
both a living will and naming a healthcare proxy or surrogate also
healthcare proxy or surrogate also
healthcare proxy or surrogate also called
called
called a durable power of attorney in
a durable power of attorney in
a durable power of attorney in Pennsylvania both of those documents are
Pennsylvania both of those documents are
Pennsylvania both of those documents are absolutely essential because
absolutely essential because
absolutely essential because Pennsylvania has put legislation in pace
Pennsylvania has put legislation in pace
Pennsylvania has put legislation in pace that tells us as physicians what to do
that tells us as physicians what to do
that tells us as physicians what to do if we don’t have those documents it
if we don’t have those documents it
if we don’t have those documents it tells us who your legal next of kin is
tells us who your legal next of kin is
tells us who your legal next of kin is if you haven’t named anybody and you’re
if you haven’t named anybody and you’re
if you haven’t named anybody and you’re unable to make your own decisions if
unable to make your own decisions if
unable to make your own decisions if you’re legally married even if you’re
you’re legally married even if you’re
you’re legally married even if you’re estranged from your spouse your spouse
estranged from your spouse your spouse
estranged from your spouse your spouse is your legal next of kin and that’s the
is your legal next of kin and that’s the
is your legal next of kin and that’s the person that I have to listen to who will
person that I have to listen to who will
person that I have to listen to who will direct your medical care if you’re
direct your medical care if you’re
direct your medical care if you’re married but you have adult children from
married but you have adult children from
married but you have adult children from a previous relationship they have equal
a previous relationship they have equal
a previous relationship they have equal standing in that decision and we have to
standing in that decision and we have to
standing in that decision and we have to go by majority rule it’s not a position
go by majority rule it’s not a position
go by majority rule it’s not a position people want to find themselves in it’s
people want to find themselves in it’s
people want to find themselves in it’s not a position anybody want to put wants
not a position anybody want to put wants
not a position anybody want to put wants to put their family in and in order to
to put their family in and in order to
to put their family in and in order to avoid that you have to put it in writing
avoid that you have to put it in writing
avoid that you have to put it in writing the living will says these are the
the living will says these are the
the living will says these are the interventions I want if I am terminally
interventions I want if I am terminally
interventions I want if I am terminally ill if I am coming to the end of my life
ill if I am coming to the end of my life
ill if I am coming to the end of my life and these are the interventions I don’t
and these are the interventions I don’t
and these are the interventions I don’t want in Pennsylvania the state has put
want in Pennsylvania the state has put
want in Pennsylvania the state has put on the books that they’re going to
on the books that they’re going to
on the books that they’re going to assume that everybody regardless of
assume that everybody regardless of
assume that everybody regardless of their medical condition will want a
their medical condition will want a
their medical condition will want a feeding tube unless they have
feeding tube unless they have
feeding tube unless they have information in writing otherwise many
information in writing otherwise many
information in writing otherwise many people feel strongly that that’s not
people feel strongly that that’s not
people feel strongly that that’s not what they want you have to put it in
what they want you have to put it in
what they want you have to put it in writing if you do that then when that
writing if you do that then when that
writing if you do that then when that moment comes the people taking care of
moment comes the people taking care of
moment comes the people taking care of you and the people who love you can make
you and the people who love you can make
you and the people who love you can make the decisions you’d want them to make a
the decisions you’d want them to make a
the decisions you’d want them to make a number of years ago I had the privilege
number of years ago I had the privilege
number of years ago I had the privilege of taking care of a woman who suffered
of taking care of a woman who suffered
of taking care of a woman who suffered through cancer three times the first
through cancer three times the first
through cancer three times the first time she was in her early 70s she was
time she was in her early 70s she was
time she was in her early 70s she was healthy she got diagnosed she had chemo
healthy she got diagnosed she had chemo
healthy she got diagnosed she had chemo she did well cancer went away she was
she did well cancer went away she was
she did well cancer went away she was fine several years later the cancer
fine several years later the cancer
fine several years later the cancer recurred
recurred
recurred she had chemotherapy again it was a
she had chemotherapy again it was a
she had chemotherapy again it was a little rougher that time but she got
little rougher that time but she got
little rougher that time but she got through it she survived and she was okay
through it she survived and she was okay
through it she survived and she was okay the third time I got a letter from the
the third time I got a letter from the
the third time I got a letter from the oncologist that says well the cancer has
oncologist that says well the cancer has
oncologist that says well the cancer has returned and we’re going to start
returned and we’re going to start
returned and we’re going to start chemotherapy I thought hmm I wonder
chemotherapy I thought hmm I wonder
chemotherapy I thought hmm I wonder about that at this point the woman was
about that at this point the woman was
about that at this point the woman was in her early 80s her husband had died a
in her early 80s her husband had died a
in her early 80s her husband had died a few years before she was increasingly
few years before she was increasingly
few years before she was increasingly frail she could no longer live on her
frail she could no longer live on her
frail she could no longer live on her own so I called and invited her to come
own so I called and invited her to come
own so I called and invited her to come into the office to discuss this with me
into the office to discuss this with me
into the office to discuss this with me and she did she brought her two
and she did she brought her two
and she did she brought her two daughters with her and I said to her so
daughters with her and I said to her so
daughters with her and I said to her so what do you think about this and she
what do you think about this and she
what do you think about this and she said I don’t want to do it I’ve been
said I don’t want to do it I’ve been
said I don’t want to do it I’ve been waiting for somebody to tell me that I
waiting for somebody to tell me that I
waiting for somebody to tell me that I don’t have to do it this conversation
don’t have to do it this conversation
don’t have to do it this conversation took place on Friday chemotherapy was
took place on Friday chemotherapy was
took place on Friday chemotherapy was scheduled to start the following Monday
scheduled to start the following Monday
scheduled to start the following Monday and nobody had asked but because she and
and nobody had asked but because she and
and nobody had asked but because she and I had had this conversation and I was
I had had this conversation and I was
I had had this conversation and I was pretty sure I knew what her goals were
pretty sure I knew what her goals were
pretty sure I knew what her goals were and what her values were I was able to
and what her values were I was able to
and what her values were I was able to shift her care out of the chemotherapy
shift her care out of the chemotherapy
shift her care out of the chemotherapy and into hospice which was what she
and into hospice which was what she
and into hospice which was what she wanted and what her family supported
we’ve talked about planning ahead we’ve
we’ve talked about planning ahead we’ve talked about putting it in writing we’ve
talked about putting it in writing we’ve
talked about putting it in writing we’ve talked about doing all that so that in a
talked about doing all that so that in a
talked about doing all that so that in a moment of crisis we can do the right
moment of crisis we can do the right
moment of crisis we can do the right thing but we don’t always know that it’s
thing but we don’t always know that it’s
thing but we don’t always know that it’s a moment of crisis it’s not always so
a moment of crisis it’s not always so
a moment of crisis it’s not always so clear cut we’re going to start
clear cut we’re going to start
clear cut we’re going to start chemotherapy it doesn’t always happen
chemotherapy it doesn’t always happen
chemotherapy it doesn’t always happen like that chronic diseases are well
like that chronic diseases are well
like that chronic diseases are well chronic they go on for a long time they
chronic they go on for a long time they
chronic they go on for a long time they change gradually people live with heart
change gradually people live with heart
change gradually people live with heart disease and lung disease and
disease and lung disease and
disease and lung disease and neurological conditions like Parkinson’s
neurological conditions like Parkinson’s
neurological conditions like Parkinson’s disease for years they take medication
disease for years they take medication
disease for years they take medication they get treatment they function pretty
they get treatment they function pretty
they get treatment they function pretty well and then something changes the
well and then something changes the
well and then something changes the treatment stops working they end up in
treatment stops working they end up in
treatment stops working they end up in the hospital things have to get changed
the hospital things have to get changed
the hospital things have to get changed and we don’t always know that that
and we don’t always know that that
and we don’t always know that that change means we’re coming to the end
change means we’re coming to the end
change means we’re coming to the end doctors don’t always know and even when
doctors don’t always know and even when
doctors don’t always know and even when doctors
doctors
doctors you know they’re often hesitant to say
you know they’re often hesitant to say
you know they’re often hesitant to say so they don’t want to upset anybody and
so they don’t want to upset anybody and
so they don’t want to upset anybody and doctors don’t like to talk about death
doctors don’t like to talk about death
doctors don’t like to talk about death so what do you do if you’re in that
so what do you do if you’re in that
so what do you do if you’re in that situation you have to ask the right
situation you have to ask the right
situation you have to ask the right questions you have to ask what will my
questions you have to ask what will my
questions you have to ask what will my life look like if I do this treatment
life look like if I do this treatment
life look like if I do this treatment what will my life look like if I don’t
what will my life look like if I don’t
what will my life look like if I don’t do this treatment how do you know that
do this treatment how do you know that
do this treatment how do you know that this treatment will be effective for me
this treatment will be effective for me
this treatment will be effective for me doctors have a lot of experience in
doctors have a lot of experience in
doctors have a lot of experience in dealing with large numbers we can tell
dealing with large numbers we can tell
dealing with large numbers we can tell you that this treatment is effective for
you that this treatment is effective for
you that this treatment is effective for 70% of the people in your situation ask
70% of the people in your situation ask
70% of the people in your situation ask how they know that you fall into that
how they know that you fall into that
how they know that you fall into that 70% and ask what would happen if you did
70% and ask what would happen if you did
70% and ask what would happen if you did nothing at all how many of you are
nothing at all how many of you are
nothing at all how many of you are familiar with Atul Gawande book on being
familiar with Atul Gawande book on being
familiar with Atul Gawande book on being mortal yeah
mortal yeah
mortal yeah book came out about three years ago
book came out about three years ago
book came out about three years ago Gawande as a cancer surgeon up in Boston
Gawande as a cancer surgeon up in Boston
Gawande as a cancer surgeon up in Boston I read the book because I knew people
I read the book because I knew people
I read the book because I knew people would have expected me to read the book
would have expected me to read the book
would have expected me to read the book I didn’t want to read the book at that
I didn’t want to read the book at that
I didn’t want to read the book at that point I’d been practicing as a hospice
point I’d been practicing as a hospice
point I’d been practicing as a hospice medical director for a number of years
medical director for a number of years
medical director for a number of years and I didn’t really see what anybody had
and I didn’t really see what anybody had
and I didn’t really see what anybody had to teach me about end-of-life care even
to teach me about end-of-life care even
to teach me about end-of-life care even some guy from Harvard I was wrong for
some guy from Harvard I was wrong for
some guy from Harvard I was wrong for one thing the book is exquisitely
one thing the book is exquisitely
one thing the book is exquisitely written and worth reading for that alone
written and worth reading for that alone
written and worth reading for that alone but for another I actually did learn
but for another I actually did learn
but for another I actually did learn something about end-of-life care in
something about end-of-life care in
something about end-of-life care in addition to the questions that I had
addition to the questions that I had
addition to the questions that I had always asked about quality of life and
always asked about quality of life and
always asked about quality of life and goals and values go Andy offered me two
goals and values go Andy offered me two
goals and values go Andy offered me two more he said ask what outcome is
more he said ask what outcome is
more he said ask what outcome is unacceptable to you what what outcome
unacceptable to you what what outcome
unacceptable to you what what outcome would take the treatment completely off
would take the treatment completely off
would take the treatment completely off the table and ask what trade-offs are
the table and ask what trade-offs are
the table and ask what trade-offs are you willing to make what are you willing
you willing to make what are you willing
you willing to make what are you willing to give up what are you willing to
to give up what are you willing to
to give up what are you willing to suffer through for the outcome that you
suffer through for the outcome that you
suffer through for the outcome that you want and those questions transformed my
want and those questions transformed my
want and those questions transformed my practice one of the things that
practice one of the things that
practice one of the things that surprised me about that book was that
surprised me about that book was that
surprised me about that book was that Gawande had been practicing
Gawande had been practicing
Gawande had been practicing a cancer surgeon for a number of years
a cancer surgeon for a number of years
a cancer surgeon for a number of years before he met the patient whose case
before he met the patient whose case
before he met the patient whose case drove him to look at treatment at the
drove him to look at treatment at the
drove him to look at treatment at the end of life
end of life
end of life he’d been in practice all that time and
he’d been in practice all that time and
he’d been in practice all that time and he’d never heard of palliative care when
he’d never heard of palliative care when
he’d never heard of palliative care when he went looking for answers for his
he went looking for answers for his
he went looking for answers for his patient he turned to a palliative care
patient he turned to a palliative care
patient he turned to a palliative care colleague at dana-farber in Boston and
colleague at dana-farber in Boston and
colleague at dana-farber in Boston and suddenly he learned about our discipline
suddenly he learned about our discipline
suddenly he learned about our discipline I was surprised but I shouldn’t have
I was surprised but I shouldn’t have
I was surprised but I shouldn’t have been most people don’t know about
been most people don’t know about
been most people don’t know about palliative care
palliative care
palliative care those who do think it’s only for people
those who do think it’s only for people
those who do think it’s only for people with cancer or it’s only for people at
with cancer or it’s only for people at
with cancer or it’s only for people at the very end of their lives when there’s
the very end of their lives when there’s
the very end of their lives when there’s nothing more they can do for you and
nothing more they can do for you and
nothing more they can do for you and they send you the palliative route as
they send you the palliative route as
they send you the palliative route as someone said to me the other day that’s
someone said to me the other day that’s
someone said to me the other day that’s not true
not true
not true palliative care is a discipline that
palliative care is a discipline that
palliative care is a discipline that offers care for people at any point in
offers care for people at any point in
offers care for people at any point in the course of a serious illness they can
the course of a serious illness they can
the course of a serious illness they can help people feel better they can help
help people feel better they can help
help people feel better they can help reduce symptoms they can help improve
reduce symptoms they can help improve
reduce symptoms they can help improve function throughout treatment and they
function throughout treatment and they
function throughout treatment and they can help with those very difficult
can help with those very difficult
can help with those very difficult decisions with those questions that it’s
decisions with those questions that it’s
decisions with those questions that it’s so hard to ask they can help you get the
so hard to ask they can help you get the
so hard to ask they can help you get the information you need from your doctors
information you need from your doctors
information you need from your doctors to make the decisions that are best for
to make the decisions that are best for
to make the decisions that are best for you
you
you anybody facing serious or potentially
anybody facing serious or potentially
anybody facing serious or potentially life-threatening illness could benefit
life-threatening illness could benefit
life-threatening illness could benefit from a discussion with the palliative
from a discussion with the palliative
from a discussion with the palliative care team nobody wants to have these
care team nobody wants to have these
care team nobody wants to have these conversations but having those
conversations but having those
conversations but having those conversations and making these plans can
conversations and making these plans can
conversations and making these plans can be absolutely the greatest gift you can
be absolutely the greatest gift you can
be absolutely the greatest gift you can give to your family my mother died a
give to your family my mother died a
give to your family my mother died a couple of months ago after living with
couple of months ago after living with
couple of months ago after living with dementia for a long time and because we
dementia for a long time and because we
dementia for a long time and because we had this conversation when she was
had this conversation when she was
had this conversation when she was capable of expressing her wishes my
capable of expressing her wishes my
capable of expressing her wishes my brother and I knew exactly what she
brother and I knew exactly what she
brother and I knew exactly what she wanted and exactly what she did not want
wanted and exactly what she did not want
wanted and exactly what she did not want we that made it possible for her to die
we that made it possible for her to die
we that made it possible for her to die comfortably at home in her own bed and
comfortably at home in her own bed and
comfortably at home in her own bed and for my brother and I to know completely
for my brother and I to know completely
for my brother and I to know completely and for sure
and for sure
and for sure that we did the right thing there’s
that we did the right thing there’s
that we did the right thing there’s tremendous peace in that knowledge and
tremendous peace in that knowledge and
tremendous peace in that knowledge and busy
busy
busy gift that she gave us and is it a gift
gift that she gave us and is it a gift
gift that she gave us and is it a gift it is a gift that you can give your
it is a gift that you can give your
it is a gift that you can give your loved ones as well nobody likes to talk
loved ones as well nobody likes to talk
loved ones as well nobody likes to talk about death but when we do better things
about death but when we do better things
about death but when we do better things can happen because you’re the expert on
can happen because you’re the expert on
can happen because you’re the expert on your values and your goals and your
your values and your goals and your
your values and your goals and your quality of life and I’m the expert on
quality of life and I’m the expert on
quality of life and I’m the expert on what medical technology can get you
what medical technology can get you
what medical technology can get you there and when it can’t and when those
there and when it can’t and when those
there and when it can’t and when those two things are combined that’s when the
two things are combined that’s when the
two things are combined that’s when the best medical care happens because your
best medical care happens because your
best medical care happens because your values matter most thank you
values matter most thank you
values matter most thank you [Applause]
”
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