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