We’re doing dying all wrong | Ken Hillman | TEDxSydney

As a world leader in managing the care of very sick people, Ken Hillman’s breakthrough methods of treating critically ill patients have become the gold standard in Australia, the U.S. and Europe. His job is about keeping people alive, but he asks us to question whether that’s always a good thing.

Ken Hillman is Professor of Intensive Care at the University of New South Wales. He graduated from Sydney University and worked at St Vincent’s Hospital in Sydney before continuing his training at St Bartholomew’s Hospital in London. He was Director of the Intensive Care Unit at Charing Cross Hospital in London, before returning to Australia, where he is an actively practising clinician in intensive care at Liverpool Hospital in Sydney.

He has published over 150 peer reviewed articles as well as writing many chapters and edited several books. Ken has written a book, ‘Vital Signs’, aimed at the lay public on what really happens in intensive care. He is about to publish another one on ageing, dying and death.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx

This is a picture
of my grandfather and myself

in the mid-1950s walking around Sydney.

A few years later, in about 1959,

my grandfather died
very comfortably at home

under the care
of his general practitioner.

This is a talk about death and dying,

and it's too late to leave,
and the doors are locked.

(Laughter)

But it's about death and dying
only in the very elderly,

naturally and normally coming
to the end of their life.

So, why was it that my grandfather

was allowed to die at home
quite comfortably,

but my mother, 25 years later,
it was a very different story,

which I'll come to.

One of the reasons was that at that time
in the general practitioner's bag,

there wasn't much more or less
than what you found in hospitals.

This isn't all that long ago.

So hospitals were where you went
if you were sort of sick,

but if you were poor as well,

and you sat in your bed
being very carefully nursed,

and sometimes you got better,
and sometimes you didn't.

You can see this in films at the time,

where if anyone gets injured
in the street, someone shot or stabbed,

then there's a bystander
shouts, "Quickly call a doctor!"

A few years later, the bystander says,

"Quickly call an ambulance!"

So what was it in hospitals
that was changing?

It was about the early 1960s,
and there was an explosion of technology,

marvelous ways that we could image
every single part of the body,

complex surgery,

we divided the body into "-ologies" -

neurology, cardiology,
gastroenterology, etc. -

and the surgeons also divided the body up
into different parts that they worked on

and gave themselves different names.

And then, of course,
there was intensive care.

And 25 years after my grandfather died,

I became an intensive care specialist
in a large London teaching hospital.

And I thought I could keep
people alive forever.

These were the early days
of intensive care.

I thought it was infinite,
what we could be doing.

And in many ways, in some ways, it is.

If I had a relatively normal
brain and a liver,

I could keep everything else going.

At that time I had
six intensive care beds.

I now work in an intensive care unit
where there are 40 intensive care beds.

4000 Australian dollars
per patient per day.

But it's not only the number of beds
that have changed,

it's also the type of patients
that we're treating now in intensive care.

Many of them are over the age of 60,

many of them are in their 80s and 90s,

and many of those are
in the last few days or weeks of life.

So how did this happen?

Well, it's sort of like a conveyor belt.

With my grandfather,
he got sick in the community,

it was expected that he got treated
and managed at home.

If you get sick
in the community these days,

we almost always call an ambulance.

It's very frightening
to have someone become very sick.

The ambulance takes you
to the nearest emergency department.

Emergency departments are highly stressed.

They resuscitate you, they package you,

and they get you ready
for admission to the hospital.

And then you become
even sicker in the hospital.

And here I am,
at the end of the conveyor belt,

in the intensive care unit,
waiting for you.

This is a picture of my mother
and my brothers and sisters.

It wasn't the same
as my grandfather, for my mother.

The last six months of her life,

she was admitted 22 times
to acute hospitals.

She wasn't told
what exactly was wrong with her.

People didn't tell her

that as you get older,
things start to deteriorate,

and you become sicker.

She wasn't given any choice about this.

It was simply she got sick,
and she got put on this conveyor belt,

admitted to hospital.

I had to be a son
in those situations, not a doctor,

so I didn't interfere
with any of those decisions

until finally a very special doctor
sat us all down and said,

"Your mother is old, and she's dying,

and we should let her go in peace."

That was such a relief for all of us,

and of course,
it was a relief for my mother.

And so, 48 hours,
approximately, after that,

my mother passed very comfortably away.

What did my mother die of?

Well, when I was an intern,
we were allowed to write down "old age,"

but we're not allowed to do that any more.

We have to make up a medical term.

So for example,

everyone that dies, their heart stops,

so we write down
"cardio vascular disease."

So cardio vascular disease

is the most common way of dying
in our community.

(Laughter)

What was really troubling for me was
that my mother kept asking me,

"What is wrong with me, Ken?

If only they'd find out
what was wrong with me,

then we could do something about it."

This is very difficult to explain

because when you get old, you get sick,

and it's very difficult to put your finger
on exactly what's happening.

And also, medicine
is based on the diagnosis.

That's what we learn about for six years:

the diagnosis.

A single diagnosis.

Hospitals are wonderful places

if you have a single problem
that can be fixed.

However, when you become old,

the combination of all the so-called
chronic diseases or co-morbidities -

whatever the medicalized word is -

add up to something

that as yet, we haven't got
a name or a number for.

I like this word: frailty.

Because it comes at it
from the patient's point of view.

It's not a series of medicalized terms,

it's frailty.

And I'm sure many of you in the audience
have experienced people that are older,

and you know what happens
as you get frail,

as you get more frail.

And I particularly like this frailty score
because it' got nice pictures.

So you start off at number one,

you are very fit
in your sixties, seventies,

and then you gradually
get more and more frail,

more and more vulnerable.

Until you find it
very difficult to get around,

until you become even more vulnerable.

Then you are confined to a wheelchair,

and finally, you haven't got
the strength to get out of bed.

Despite all the specialties
and all the drugs

and all the marvelous things
we can do in medicine,

age-related frailty is not curable.

So TED Talks are not only
about the problem,

they are also about the solution,

and what I'd like to talk to you about

is what we are trying to do about it
in my own hospital.

It's not really about high technology
or IT or anything like that.

It's not fancy stuff.

But I'm very fortunate
to work in an organization

that has a culture of looking at things
in a different way,

putting the patient in the center,
rubbing all the other things out,

and thinking, well,
how can we do this in a better way.

So, believe it or not,

doctors in hospitals
find it very, very difficult

to recognize people at the end of life.

I know that sounds very hard to believe.

So we are working on a tool
that gives us some idea

about people that have got months
or perhaps a year to live.

It's called the crystal tool.

It's very simple, can be used
by people at the bedside.

It's just a combination
of things that are logical,

like age and the frailty score
and things like that.

Now, with everything
that we do in medicine,

there's uncertainty.

Uncertainty is inherent in medicine.

So take, for example, a 20-year-old person
with a terminal brain tumor -

we do all the tests,
and we find that it's terminal.

The first thing we do -

well, the first thing
the person wants to know is,

"How long I've got to live?"

So just using all the data we've got
of everyone with that particular tumor,

we can say, "Well, maybe a year.

It could be six months.

It could be two years.

Maybe, in exceptional circumstances,
it may be three years,

but the disease is terminal,
and we can't do much about it."

And it's the same thing with the elderly.

Some score like this will at least able us
to move to the next stage.

And the next stage
is not rocket science either.

But believe it or not,

doctors are very uncomfortable
talking to elderly people about dying.

I'm not too sure why that is.

So the next step after we recognize
these people is to begin a discussion

in an honest and empathetic way.

The next step after that is also logical,

but believe it or not,
this doesn't occur either.

It's to empower the patients
and their carers with choices.

So you'd be honest about
where we think they are in life,

how long they've got to live,
and how would they like to live that life.

Maybe they'd like to keep
coming in and out of hospital,

maybe they'd like the most
aggressive treatment available,

but at least, it would be
based on proper data

and a proper way to make a decision.

However, many people, we've found,

don't want to keep coming
in and out of hospital

once they know they haven't got
terribly long to live.

In fact, about 70% of people,

in this country, in America
and the United Kingdom,

when are asked, would rather die at home.

Now, this contrasts with,

about 70% of you will die
in acute institutions, in hospitals.

So there's a discrepancy here,

which sort of reinforces the fact

that we are not talking to people
about this in the proper fashion.

The long term solutions
are not in hospitals.

The long term solutions are things like

putting the family doctor
more in the center of care;

advance care directives,

you need to be thinking about this
while you're able to,

talking with your loved ones
and writing it down.

But then we also need
to move resources and support people,

if they are going to die in the home,

so that they are looked after,

so that they've got respite care.

I'd like to be controversial here
and say that I don't believe

the last few months or year of life
in a very elderly person

is a medical challenge.

Maybe if they've got pain,
or they are uncomfortable - sure.

But most of it is about community support:

facilitating the carers,

making sure their house is clean,
making sure they've got food,

making sure they're washed

and all of those sorts of things.

This is not so much a health
or medical problem.

So dying in the elderly has been hijacked.

Patients are divided
into individual organs,

and we try to fine-tune
and make these individual organs better.

A little bit like birthing was
in the 50s or 60s,

which was also hijacked.

Women in labor were taken to hospital,

strung up, legs apart, baby taken out,

baby put in with all the other babies,

fathers not allowed
to be with their wives,

fathers not even allowed to hold the baby.

This was the normal way
that we conducted birthing

in the 50s and 60s.

That's similar to what's happening
with the elderly at the moment.

So this is where many of you will die:

surrounded by high technology,

cared for by well-meaning people

with a lot of expertise
in their own particular area.

It's also

that we hear about medical miracles
almost on a daily basis,

and that's exciting.

But we hear about what health can do,
what modern medicine can do,

but we don't hear very much
about what modern medicine can't do.

We need to be far more honest
with our community

about the limitations of modern medicine.

There's rarely a day goes by
when I do my ward rounds with colleagues

that one of us doesn't say, "Please,
don't ever let this happen to me!"

So this is one of the most important
decisions in your life.

You need to take control
over your own end of life.

Thank you very much.

(Applause)