Change Your Death Change Your Life
change your death change
your life change your death
change your life i expect that this
title sounds somewhat counterintuitive
and perhaps even nonsensical to many of
you
but by the end of this presentation i
expect that this
title and this statement will not only
make more sense
but will become obviously and perhaps
inevitably true
by thinking thoughtfully about death and
end of life
you can change your life for the better
i’m a physician i’m a specialist
i specialize in two different fields of
medicine
one is hospice care and the other is
palliative medicine
hospice care is medical care for
patients with a life-limiting illness
hospice care is considered to be the
model for high quality compassionate
care
providing expert medical care symptom
management
emotional and spiritual support tailored
to the patient’s needs and wishes
it also provides support to the
caregivers and families of these
patients
and the care with hospice care focuses
on optimizing quality of life
rather than curative or life-prolonging
treatment palliative care
is different palliative care
is specialized as a medical subspecialty
much like cardiology or oncology or
neurology are medical subspecialties
cardiologists focus on treating and
managing diseases related to the heart
or cardiovascular system
oncologists focus on treating cancers
wherever they might be in the body
palliative care specialists focus not on
any one
organ system or one disease we focus
on treating patients with very serious
and complex illness
that serious or complex illness might be
in some cases cancer
it might be advanced and complex heart
or lung disease
or it might be advanced parkinson’s or
als
for some examples palliative care
focuses on providing relief
from the symptoms and stress caused by
their serious illness
or caused by the treatments for their
serious illness
the goal of palliative care is to
improve the quality of life
for the patient and the family
as a palliative care specialist
some of my patients do achieve cure
some of my patients live many months or
years longer than originally expected
but they’re living a very good quality
of life
but eventually do succumb to their
illness
and some of my patients are living with
an incurable illness
yet they’re living a reasonably good
quality of life
and some of my patients have even told
me that their quality of life
is actually better than before their
diagnosis
how can this be
some people will say to me or ask
palliative care isn’t that basically
pre-hospice care
and my response to that is palliative
care is no more
pre-hospice care than cardiology or
oncology
for example our pre-hospice care and
what i mean by that is that
cardiologists and oncologists focus on
treating
patients who have a serious illness some
of those patients
might be able to be cured or do achieve
cure and many of those patients
will live many many months or many many
years
while having their disease managed
hopefully their symptoms improved but
eventually
the patient will succumb to their
illness and at some point
they’ll transition to hospice care
because that will best serve their needs
so in that way palliative care is no
more pre-hospice care than a lot of
other medical subspecialties
palliative care is not the same as
hospice care
with the part of the reason why
i’m talking about palliative care and
hospice care
is in part to provide some education and
understanding
on the distinction and difference
between hospice and palliative care
but for the purposes of this talk and
more importantly
is to give you a sense of with what i do
the wide spectrum of patients
and very serious situations that i deal
with
on a regular basis
a lot of us talk about a good death
or what constitutes a good death and
much has been
written about what is a good death and
maybe what isn’t a good death
a lot of studies have actually been done
looking at various variables or surveys
on what people
medical professionals patients or
caregivers
believe constitutes a good death of
course
what constitutes a good death is going
to be subjective
and dependent on an individual’s values
personal preferences and perhaps even
culture
in 1997 the institute of medicine stated
that
a good death is one that is free from
avoidable distress
and suffering for the patient family and
caregivers
in general accord with the patients and
family’s wishes
and reasonably consistent with clinical
cultural and ethical standards
literature and various surveys have been
studied and teased out looking at all
the different variables that
people claim contribute to a good death
these are some of the factors that are
commonly raised as
identified what many patients or
caregivers or medical professionals
identify as contributing to a good death
that is personal preferences for the
dying process
what the patient hopes that looks like
and where they hope to be
being free of pain and suffering
maintaining a sense of emotional
well-being
maintaining a sense of dignity and
having the presence of
family in their final days weeks or
months of life
we can’t all choose or control exactly
what we will die from or where will we
we will be when that time comes
but there’s a lot that we can do if we
face death
think about it thoughtfully where
we can choose a journey filled with
a greater sense of peace dignity and
harmony
for our end of life
for whenever that time may come as
opposed
to a course or journey that is fraught
with more distress
more potential suffering and
fraught with the chaos of the medical
system
and interventions that are probably
non-beneficial
some of my physician colleagues
have approached me personally or
privately and
have sometimes asked me with what you do
and with what you see in the wide
spectrum of
what you see on a daily and regular
basis
what disease is the worst which one
causes the most
suffering is it als
and becoming progressively weaker losing
your independence
and feeling trapped in your debilitated
body
is it head and neck cancer or cancer of
the esophagus
and dealing with the pain that comes
with it or difficulty swallowing
or the deformities that the cancer or
sometimes the treatment itself may bring
with it
or is it advanced lung disease like
emphysema
and feeling like you can’t breathe and
you’re struggling to breathe and feel
like you’re suffocating
my response to my colleagues when i’m
faced with that question is the
following
there is no disease or illness
that correlates well with a good
and easier journey and end of life
or more or less suffering
there is however a characteristic that
i’ve come to see
time and time again that does correlate
with whether a patient is going to
experience
a good death or a more difficult
tumultuous end-of-life experience
and that characteristic is the following
how well aligned a patient’s
expectations are
with the reality of their situation
when a patient’s expectations are poorly
aligned with
and discordant from the reality of their
situation and circumstances
these patients tend to experience much
more disappointment
distress suffering not just during their
treatment course
but also at the end of life when a
patient’s
expectations and reality are more
appropriately aligned
these are the patients who tend to have
an easier
and calmer course throughout their
treatment and experience
less distress and suffering when their
end of life comes
in fact it’s gotten to the point where i
can actually predict
early on who is going to have
an easier and better end-of-life
experience and who’s going to have
a more difficult journey in their end of
life
and again it all comes down to this
characteristic that characteristic again
is how well aligned one’s expectations
are
with the reality of their situation and
circumstances
in my work as a palliative care
physician and as a hospice care
physician one thing that i’ve come to
see is that
people oftentimes die much the way
they’ve lived if someone has
lived a life full of anxiety unnecessary
pain and chaos in their life
their end of life is probably going to
be fraught with
anxiety unnecessary pain and chaos in
their life
when they’ve had a life where their
families cause a lot of drama
or distress or discord they’re probably
going to have that same kind of
unfortunate chaos and discord with
family near the end of their life
on the other hand when patients go
through their lives
with good coping skills
a mature sense of how to go about things
and have a good sense of how to deal
with difficult circumstances
these patients tend to have a calmer and
easier
and well-adjusted experience at the end
of their life
so how you live oftentimes is how you
die
and changing how we live can be
difficult
and while that may be true
thinking about thoughtfully
death and dying and what matters most to
you
can influence and change
how you live today
this all comes down to this concept and
i’m here to tell you today that there is
a different way
of approaching this change your death
change your life
in the last 10 plus years a lot of
studies have been done
looking at the effects of palliative
medicine
on patients living with a serious
illness and specifically looking at the
involvement of
early involvement of palliative care
even as early as the time of diagnosis
and these studies over the last decade
or so have shown
repeating themes and what we’ve learned
from these studies is that patients
who are facing a serious illness and
have a palliative care specialty
team involved in their care experience
and report
a better overall quality of life less
rates and less severity of depression
they tend to have a better and more
accurate understanding of their illness
they tend to report a more accurate
understanding of their prognosis
and what these studies have shown is
that the patients who
have the benefit of a palliative care
team
overall live just as long and in some
studies we’ve learned that
they live significantly longer than the
patients who don’t have a palliative
care team
involved in their care
and this is also true of their
caregivers and families
studies have looked at the effects on
caregivers and families and what we’ve
seen
is that families experience less
depression
they cope better with the circumstances
they have better bereavement support
and report an overall better experience
what is it about palliative care that’s
resulting in these changes and these
benefits
palliative care certainly does do a lot
to try and help the quality of life of
patients
we have physicians that are expertly
trained in meticulously managing
complex symptoms we have social workers
dedicated to our team to help patients
and their families
navigating the medical system and
helping with additional resources
we have psychotherapists dedicated to
these patients to help them with
coping with their serious illness and
empowering them with tools
to deal with their symptoms and their
journey
but what i think contributes more than
anything
to these benefits is
communication and honesty
eloquent and expert communication and
forthcoming honesty
about their illness about their
prognosis about their treatment options
about the intentions of their treatment
options and the likely outcomes
the other thing that we do as palliative
care specialists is we engage
our patients in thinking about
what matters most to them and we engage
them in difficult
but valuable discussions about
end of life not because they’re dying
now or they’re going to die
soon but by talking about end of life we
can have a plan in place
so that way they feel reassured that
whatever happens in the future
there’s a plan there’s something we can
do there’s something we can do to help
them
and to help them continue living as well
as they can
i’m going to tell you about a
situation a scenario that i encounter
frequently in the hospital setting
i’m consulted and being asked to see a
patient
and to help this patient delineate their
goals of care
this patient is clearly in their final
weeks or perhaps months of life
and because of that they’re weaker
than they usually were and they also get
more fatigued more easily
and this patient is now faced with a
choice
depending on their circumstance in one
scenario they’re off they’re faced with
the choice of
you’re pretty weak here in the hospital
but we can offer you a course
of sub-acute rehabilitation in a skilled
nursing facility for several weeks
to try and maybe possibly get a little
bit stronger
or you can focus on your comfort
your quality of life and returning home
with the hospice care team to help
support you
in another patient it might be the
option of
continue with a couple extra attempts at
third line chemotherapy or return
home focusing on your comfort your
quality of life
and going home with the support of a
hospice care team
and i’m being asked to help this patient
to make the best possible decision for
themselves in this difficult
circumstance
and i take the time to get to know who
this patient is
what matters most to them what
is important to them now and in the
future and what their personal values
are
and as i get to know them and talk with
them one patient might be telling me
i want to pursue that course of
sub-acute rehab because i’m a fighter
and i’m not going to give up the other
patient might tell me
that she wants to pursue that extra
chemotherapy because she’s not quite
ready for hospice care
just yet and as they tell me more about
what they’re looking for and what
they’re hoping for
it becomes more evident to me as i’m
listening to them
that their hopes and their wishes
and their expectations can probably be
best served and supported by hospice
care
and so in these situations i’m
oftentimes asking
these patients the following
we can’t predict everything we can’t
predict how
chemotherapy will go in other child
chemotherapy or how
a couple weeks that a rehab facility
will go for you and what benefits you
might get
but we do know a couple things are
certain and true
what we do know is that your time is
limited and your energy is limited
we don’t know exactly to what extent
your time is limited but we know
conceptually it’s limited
and the patient can often tell me better
that to what extent their energy is
limited and how easily they become
weak and disabled and so i oftentimes
ask them
knowing that your time and your energy
are limited
how do you most want to spend your
precious limited time
and energy if you take the time to think
thoughtfully about how you most want to
spend that time and energy
do you want to spend that time a couple
weeks at a
skilled nursing facility doing some
rehabilitation
where physical therapists and
occupational therapist will consume your
precious limited energy
or do you want to go home and spend your
time with your family
and spending your energy doing things
that are more important to you
by thinking about and answering what’s
most important to you and how you want
to spend your time and energy
the answer to that will probably serve
as a good guide
to how to make your decision
precious time and energy is not unique
to patients facing their final chapters
of life
it is true for all of us we all have
limited time and
limited energy every day and so i ask
you
how do you most want to spend your
precious limited time and energy
by taking the time to think and imagine
your end of life and how you most want
that to look and how you most want to
spend your precious limited time and
energy
that can inform how you’ll live today
and by taking the time to think about
how you want to live today
it can inform how you probably will die
if you take this information and what i
told you earlier that i can predict
who’s going to have an easier end of
life who’s going to suffer more or is
going to have a calmer end of life
and that how one lives informs how one
is likely to die
what changes will you make in thinking
thoughtfully
about your death and how will that
inform how you life how you live
today and how will it influence your
loved ones today
and at the end by taking the time
to think about changing your death you
can
change your life and by changing the way
you live
you will inevitably influence how you
will die
thank you very much