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What Happens At The End of Life?

hey what's up everyone today we're gonna

talk about death and dying not in a

morbid way but actually to help many of

us who are curious about it to find some

peace of mind separating fact from

fiction

I'm Risa Morimoto your host and you're

watching modern aging where we chat

about innovative and holistic ways to

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today's guest is dr. Chris Carter he's

chief medical officer and CEO of hospice

Buffalo he's interviewed thousands of

patients over the years about their

experiences as they approach the end of

their lives you can check out his TED

talk on YouTube just type in Christopher

Kerr I see dead people

we had an awesome conversation about the

process of dying separating what is

common myth to what is actual fact check

out you know when we first talked or

when I first saw your TED talk I was

very excited to talk to you today we're

going to talk about the process of dying

but before we kind of get to that I'd

love to hear a little bit about you and

your background how you came to become a

hospice doctor sure I'm born and raised

in Toronto Canada I'm still Canadian

uh-huh came down for a beer in the early

80s and ended up staying seriously yeah

yeah I met somebody and so I'd been here

ever since and I live close to Kane

border in a small town called East

Aurora near Buffalo

I live on a horse farm I got to hospice

complete by accident I trained did my

residency at strong and internal

medicine and then I came to Buffalo for

cardiology and I needed to moonlight to

support my family and one day I'm

looking through the one ads an ad for a

hospice doctor and I had funny because I

had petitioned to actually get out of

the rotation as a resident I didn't

think there was anything to learn or do

Wow

so I went there just looking to do some

weekend work to supplement my income and

that's how it happened and I started

working there and I just was immediately

taken by how much there was to do right

I know well I'm curious actually how

much like what do you do as a hospice

doctor you know you're really looking

after the totality of the patient so

from complex symptom issues to

psychological distress you're caring for

their practical needs you're caring for

them in the context of their family the

best way to describe it as other

specialties of Medicine tend to be organ

focused and we're focused on the larger

experience of illness anything that's

affecting quality of life so it's

heavily predicated on a lot of

communication open honest transparent

communication so that includes

prognostication what to expect things

that may be absent upstream in the care

of the patient so it's all of that Wow

so you must develop kind of close

relations with some of these patients no

I mean and what's kind of doing normal

span of time that they're there well

unfortunately there's a subset of

patients probably a third they're in for

a week or less and then the rest may be

there for several months but you do get

very close because you you you get to

see them as people not just patients

you're you know you're caring for them

in their home you're caring for them in

the context their relationships their

existential issues so you do health

calls oh yeah yeah I'm sorry yeah the

most about Hospice is home based care

okay so I thought there's an institution

I thought you're not actually Hospice no

we have a dedicated unit a free-standing

unit where people come who are in

distress or can't be cared for in their

home but the vast majority of patients

90-plus ninety-five percent of our

patients we care for where they are

right and I think I feel like most

people don't want to die in a hospital

right well for obvious reasons oh that's

amazing though so are you also there at

the last moments often yep mm-hmm and so

kids so what actually happens as like

when do you know that death isn't

at what point it's really notable for

how a traumatic it is or anti-climatic

it is you know dying is really a process

it's it it doesn't occur in minutes it

usually occurs in months there's 10

percent of deaths are acute

the rest are essentially for castable

and the common denominator for all of

them is a lessening you know you eat

less you do less you sleep more and

that's the trajectory we tend to think

of it you know illness in terms of parts

but this is more constitutional dying

and if you think of old people you know

who've died you know one month they stop

going to get their mail the next month

they stop going upstairs they start

napping more they eat less the body has

ways of telling itself that we're

dwindling and that's what dying really

is it's a dwindle it's a slowing down

and you sleep more comfortably so

there's less to do than you would think

we tend to complicate dying yeah we you

know an early illness it's you know if

you take something like cancer where you

are and the diseased is determined by

you know the size or the spread and so

we get very focused on quantifying

illness in terms of measurables you know

what our blood counts what's the size

the tomb or that sort of thing but

actually that becomes less of the issue

so we see people who are dying even as

tumors are regressing because oh yeah

because it's not really the issue it's

the burden of disease over time so if

you had the flu for three days you'd

feel one way the flu symptoms could be

less but if you had to flip those

symptoms for 30 days you would feel

dramatically different so it's it's it's

that weight of illness it's the it's

it's the cost on the body and what it

gradually it doesn't pay to do it pays

to do less to eat less and that's why

the common denominator is progressive

sleep unless something's interfering

with that process something being you

know pain or a bad cough or

breathlessness

so a symptom otherwise

actually a bit there's a built-in

mechanism for dying that it's an 8 do

you think that people know when they're

dying yes yes that's the great the

joke's on us you know I even know

doctors who you know don't want to tell

a patient that they're dying because

they equate that with giving up or

taking away hope right which is absurd

first of all it's the patient's life in

their body in an age of autonomy and

self-determination if anything you

should have the right to reclaim what's

happening with your life but

unfortunately that actually happens

people keep that from patients I've

never met one didn't know they were

dying even in dementia it's shocking how

people have an awareness I mean if it's

you're lying in bed and you can't get up

anymore you look at your arm and it's

half the size it was you know you have a

way of self informing that defies

medicines best attempt to deny dying so

the tension comes when there's an

incongruity and you see it all the time

where patients are aware yet medicines

telling them something else in terms of

the actual physical process right so

once they're in Hospice yeah do they get

pulled off all their meds

no not at all no there's there's a lot

of myths with hospice first of all

physical pain is way overstated it's

it's it's less oh sure oh yeah

far in a way I would say confusional

state psychogenic distress the

consequences of impairing sleep or

changing sleep architecture people

starts as people start to transition

there those become more prominent pain

is much less of the issue right that's

the fear right yeah and that's one of

the same that's a symptom of what's

wrong in the care of sick people is that

people go into it completely uninformed

as to what to expect next I often tell

the story that people will go to the can

to hospital know where to park how much

the coffee is but they actually don't

know how they're gonna die let alone

when they're gonna die is that just

because the doctor doesn't tell them or

they don't ask or is there just like

this weird yeah there's a couple of soms

sometimes it's hard for patients to hear

it so there are doctors who are fully

disclosing I think that medicine is set

up to be so interventional even

economics of medicine don't really

recognize the dying patient they

recognize the patients we do things too

so all right if you think about it so

you don't you don't go to the hospital

because you're feeling sick and are

dying you go there because something is

being done to you right even if it's

just an imaging so that's where we

recognize the patients so we were

heavily focused obviously on the

treatment not the relief of suffering

and so the dying patient almost falls

off the assembly line of an of care in

our modern healthcare system and because

the primary doctor is a much different

role now they're kind of they've often

fade into the backdrop as subspecialty

medicine takes over right but if you

don't have a reason to go back to the

doctor you're often left and you're left

with these great questions where am I at

what's going to happen to me and that's

where the fear comes in yeah and you

know we have a medical culture that's

death-defying yeah why you know it's

interesting I think that as medicines we

evolved and there's more to do we've

become self enamored with technology and

the skills that we can bring to bear to

fight illness but we've gotten more and

more focused on organs and not the big

picture I think there's an assumption

that somebody else is telling the

patient you know what's actually

happening and there's some data that's

really interesting the more doctors

involved less the patient actually knows

well you got a bunch of spot welders you

know I'm coming I'm

the kidney guy I know I don't know

what's going on with this I'm here I'm

here for your heart I don't know what's

going so it's very possible to be

getting world-class care multi-million

dollar care be within a unit or

something and the family not actually

know what's transpiring right so there

is a gross absence of of honest

communication about what's happening and

if you think about it if if your means

of communicating with your doctor is

because you're being evaluated or

something's being done to you

when there's no longer anything to do

which is the worst words and you can say

in medicine there's nothing more we can

do for you that's when you literally go

home and your your your family and you

are left with what happens next and

unfortunately we're in a healthcare

environment where there's very little

dollars towards care at home so when you

need care most you receive the least

amount so yeah it's tragic so in terms

of the actual physical process of dying

like this steps you know how do you

advise families and how do you advise

patients I don't know if it's the same

in terms of communications so basically

their doctor they're they've been in the

hospital their doctor who now says we

can't do anything else right so then

they get transferred to Hospice right

and that's where you step it yep right I

think the starting point typically

because there's an abundance of

misinformation or a lack of information

or disparate pieces of information the

first thing you have to do is find out

what they actually know and it's often

striking so you'll see somebody who's

literally days from death who doesn't

know that they're actually dying that

soon so there's you know the over

prognostications by a factor of 2 to 3

on average so yeah so resetting things

often first requires determining what

somebody understands and then really

what do they want to know and what you

find is people wanted

again because they've been having these

dot this dialogue with themselves often

that's in congruent to what they're

hearing

from the medical practitioner so yeah so

you kind of reset the table and they

should expect to that it's fine for them

to sleep more don't bother them you know

like what do you what do you tell a

family like what to expect in terms of

the actual process just make sure you

know I know whether it's were in the

hospital we're so trying to be like make

sure you turn them over make sure

they're not getting bed sores all that

kind of yeah yeah I think what you do

typically is you you go with them and

and repaint the picture so Madhu this

with you with somebody you've lost for

example you know before they died and if

we were to talk and say you know what

were they like six months ago or they're

like four months ago two months ago

today it's seldom a falling off the

cliff phenomena it's a slow slide that

slope or that trajectory is the same one

that's going to take them to the end

they've often been in the process of

dying but nobody's inform them it's

functional it's practical it's eating

and sleeping it's activity level it's

talking less it's it's being different

and once you can can recontextualize

what somebody's experience and then they

can usually understand what's going just

going to continue in the same trajectory

do you bring it in social workers yeah

so a hospice was brilliantly framed and

that it was was a number of things it

was really an antithesis of the medical

model so it's mandated volunteer

mandated spiritual Claire Social Work

nursing you know the physicians there

but they're their part they're really

truly are part of a team I find that

within treatment there's a lot of times

like a cultural gap you know for

examines Japanese right so it took us a

while to figure out have aides and

doctors and stuff to understand her

cultural background how she likes to be

treated how she likes to eat how she

likes you know what I mean it's like all

these different things that are subtle

yet important yeah

especially when one sick so I'm just

wondering at the end of life is that

taken into account or is there kind of

like kind of a standard thing that

happens yeah I know it's it's it's not

templated at all again imagine your your

your mom or your father now is taken

care of in their home and your present

it can't help but become personalized

and specific to that individual it's

very very much about your choices and

your perspectives yeah I mean your

you've come out of a sterile

institutionalized form of care right and

processed to really work we're coming to

you

we're meeting you where you are

psychologically spiritually in terms of

your wishes all those sorts of things I

feel like the fear of death it's

probably one of the number one things

right that people it creates anxiety for

them what do you say to patients who are

fearful of yeah again it's remarkable

for the fact that it's really less more

anti-climatic than climatic it's quieter

it's gentler it's more peaceful it

requires less intervention than you

would think you've essentially been

doing it you know on your own

and and and well it's a lessening and

it's it's more peaceful than imagined

and you just go describe it I again it

goes to this issue in the absence of

conversations in the absence of

knowledge people presume fears you've

already done it you made an assumption

about pain that it's going to be if you

know if I told you you were dying that's

probably the first thing is you am I

going to suffer so people need to be

reassured what Dyne looks like it's

actually hard to die in a sufferable

state because you need to sleep in to

sleep you need to be comfortable they

need to be comfortable not only

physically but psychologically so

gradually that comes over you and people

generally die peacefully I would do a

whole thing on Hospice

I would start with looking at the myth

so people live longer with hospice you

don't live short

you know you don't deny care if you have

heart failure the way you manage

symptoms of heart failure at end of life

is by managing the heart failure so it's

not a lesser care model in fact it's a

richer care model so you know it's it's

it's not like oh you flicked a switch

and now you're in hospice you stop all

your medical right now I mean you stop

the absurdities you know that

cholesterol-lowering medicines you know

that are meant to treat end organ

disease over many years you know but you

manage diabetes it doesn't feel good to

have a high blood sugar so you know all

the things that make you feel more

comfortable need to be kept in place so

it's it's actually a aggressive medicine

yeah it's not passive medicine does that

physically fight with the body that's

trying to die no not at all no yeah you

know people talk about these last

moments right you that hearing is the

last to go that you see a light know how

there's like these no light things

[ __ ] they you're confusing

near-death friend of life experience so

the near-death phenomena is universally

I've never seen it because there that's

folks who clinically die and come back

right the universal experience

apparently is that you see a white light

and the tunnel and all that sort of

things that's not what happens no no no

no no and there's all sorts of things

like they they say that you know the

occipital lobe of your brain being

deoxygenated and you know there's a

medical explanation for why that may or

may not be occurring people who are

genuinely dying and not coming back from

it don't experience the the tunnel of

white light thing you know we I think

maybe the odd time I've heard of a light

but but not like you do that's what

NDA's are near-death experiences are

right these folks aren't near-death

they're dying yeah but they do say that

the hearing yes the last thing to go and

talk to people really at their last

moments

yeah and you know it's one of the things

is dying people don't want to be treated

like dying people they want to be

treated like the people they were in

life so sometimes the most comfortable

deaths you know like if they're a

kitchen family where everyone hangs

around and it's vibrant and a lot of

open communication that's how they like

their room you know they don't nobody

wants to be treated like they're frail

and need to be put on a shelf you know

there are people who certainly are

uncomfortable you know that matriarchal

person doesn't want to be seen in her

nightgown now maybe that's different but

generally people want to be treated they

it becomes really profoundly a human

experience and they don't want to be

sterilized they don't want to be put on

a shelf they don't want to be treated as

though something is makes them less so

they want to be touched they want to be

talked to they want to be regarded yeah

and they hear we would love to hear your

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