Horizon (1964–…): Season 55, Episode 1 - We Need to Talk About Death - full transcript

Dr Kevin Fong makes a personal journey through the moral questions about death that face not just the medical profession, but each and every one of us.

This programme contains some scenes
which some viewers may find upsetting
from the start.

So, this is John, and, er...

Where's the...the clapperboard?

Camera, action! Action!

And Avril is his daughter.

And you were in real trouble
in the care home

you were staying in, weren't you?

I certainly was.

Talk to me about how you were
feeling

in the time leading up to
coming in here.

Well, I was absolutely...



..full of fear

at the prospect of living
for several years.

And I was getting more and more
depressed. Yes.

Because there didn't seem to be any
light at the end of the tunnel,

until a certain person came along

and offered me an alternative,

which I grabbed with both hands.

So, the alternative for you then,
I guess, was,

"Do I see, if I stop the oxygen,
does that mean

"I'm just going to die
from the lung disease?"

Was that what was in your mind
at the time? Yes.

I was being very envious...

..of people...

..who were dying



and were leaving it all behind.

Do you feel that the way
in which we've used the medicines

to help you sleep,
do you think that's been effective?

It's been very effective.

How do you think things have been in
the last couple of days?

Absolutely wonderful.

I have now become...

..a happier person,

because I've been getting
what you would call real sleep.

Sleep which has, today, enabled me
to have a meal,

which I haven't had in a long time,
and really enjoying it.

Mm. One of my favourites - chips.

Egg and chips.
Egg and chips, with vinegar.

Wonderful.

The fact that I shall be able
to...die

..not feeling pain...

..I find it very...very helpful.

So, you know that it's really
about you letting go of life?

Do you understand that one?
Yes. Yes.

So, there is something about
preparing and then letting go,

and then you go, rather than me
doing something to make it happen.

You understand that difference? Yes.

Thank God for you.

I don't have any fear of death now.

The only thing I fear now is life.

The only thing I'm looking forward
to is...

..dying a...a happy death. OK.

That's what I've been praying for,
is a happy death.

I feel gutted now
that I won't be able to see this!

AVRIL LAUGHS

Yeah.

John had a good Christmas,

and then he slipped off, um...over
about an 18-hour period.

Largely, um...asleep
or unconscious.

So, it was a good letting go.

And for his daughters,
I think, very meaningful.

It allowed the whole family to get
to the same place at the same time,

in terms of,
"This is the end, and it's fine".

However much we don't
like to think about it,

dying is something all of us
will one day have to face.

I'm a doctor, and I specialised
in anaesthesia

and intensive care medicine.

And in this programme,

I want to take a closer look
at the ways we die.

Despite everything
that medicine can do,

our lives don't always end
the way we want them to.

And even though only around 3% of us
say we'd like to die in hospital,

research suggests that
more than half of us will.

Death is a certainty,
but until recently,

medicine invested
precious little effort

in making sure that we got it right.

And the vast majority of deaths
aren't sudden or unexpected,

and so there should be time.

Time to prepare, time to make sure
that we have a choice

over how and where it happens.

I've spent three months
getting to know two institutions

specialising in end-of-life care.

I know I'm on a short wicket.

I have worried about it, but then I
say to myself, "What's the point?"

On the way, I've met
some inspirational people.

I want to go out saying,
"She was naughty to the end".

I've had some of my long-held
beliefs challenged.

I'm confident now
that I will get there. Yeah.

And I've been looking for answers
to some of the most difficult

questions we'll ever have to face.

Nearly everyone feels better
afterwards

for having had
these frank conversations.

When is the right time to stop
aggressive medical treatments?

I believe it's morally wrong
to waste a dying person's time.

And one of the easiest ways
of wasting a dying person's time

is to offer them treatments
which you know jolly well

are going to make
very little difference.

What are the alternatives
to dying in hospital?

I want to be at home when I die.

Does a better death always
have to mean a shorter life?

There's quite a lot of evidence
that in some circumstances,

palliative care even improves
people's quantity of life.

And what offers
the best quality of life...

..as we face death?

Making this film, I made repeated
visits to St Christopher's Hospice

in South London.

Here, I met people in
the last days of their lives,

along with the clinicians
who continued to care for them.

My name's Rob George,
and I'm medical director

at St Christopher's Hospice
in London.

It's very easy in this day and age
to think that dying

is all about the medicine
and all about the treatments,

when, in fact, it's not.

Managing pain, managing symptoms
are not that difficult.

It's really the person
leaving the life

that is...the problem in hand.

St Christopher's Hospice
is a registered charity

partly funded by the NHS.

Hi, guys.

Here, I met with people who
are facing death... Hello, there!

Hello! Hello, Barbara.
Hi. How are you?

..like Barbara Elton.

She has advanced cancer and needs
help dealing with the symptoms.

The first thing any of us want,
I think, is the pain sorting.

That is the major priority.

"Please, please,
please sort out my pain.

"If you can't get rid of it,
I understand,

"but just sort it
to the best you can.

"The best of your ability."

Which they did, and they did...

..really, really quickly.

Until in the end, I was becoming
the sort of pest of the ward.

# Da-da-da-da-da. #

All singing, all dancing.
THEY LAUGH

I was a total nightmare.

A pest of the ward.

I know you were really scared
that hospices

were about being tucked up in bed...
Going in and never going out.

Never going out. A one-way street.

But the interesting thing is, you're
planning to go home now, aren't you?

Yes. Because I haven't given up yet.

You've still got to face the
prospect that you came in here
and not ER...

..for a particular reason.

And that is the reason you are...

I shouldn't talk loudly, should I?

You can talk as loud as you like,
love.

And that is the reason
you are going to die. Mm.

Now, that has fundamentally changed
everything in my life.

You're in a ward with...
You're not on your own.

No, no, no, no.
There are people here.

So, people around you here
might themselves be dying.

Has that been a problem for you?

No. It's just...

..the natural course of things now.

It might be me next, tonight.

It could be me, it could be...

I hope not, because you
get favourites, don't you?

It could be Margaret,
it could...it could be any of us,

but we expect...expect to go.

Has this always been your attitude
to death and dying?

I've never given it any thought
before.

Now that you're here... Facing it.
Yeah.

One way or the other. Where are you
in your thinking about it now?

What do I think about it?

Well, I certainly don't think,
"When?"

I certainly don't think, "Why?"

Because that's obvious.

I has to be thought about.

Um... And why? I've got a dirty
great lump there which explains.

SOBS: But I still...

Come here. Come here.

Come here, come here.

BARBARA SOBS UNCONTROLLABLY

It's fine. It's all right,
it's all right.

It's all right.
I still don't want to go.

Well, you're not going anywhere,
apart from home with me.

Aren't you?
For...for the short-term.

Yeah? I suppose so, yes.

Yeah? So, you're coming home,
aren't you?

Yes, and I'm so embarrassed.

Please don't be embarrassed.
Don't be silly.

You're all right.

The majority of deaths
are relatively straightforward.

They're not sudden and dramatic
and filled with horror.

It's about the biography,
not the biology.

By and large, once people
have engaged with it

and understand what's happening,
it's an easy process.

But it's only an easy process

if somebody has resolved, er...their
relationships,

completed their tasks,

and are thinking
about their preparations,

they're saying their goodbyes
and their sorrys

and their thank yous,

and have decided what kind
of meaning they want to attach

to the life they've led,

and whether there's anything
beyond the grave.

In our acute hospitals
and emergency wards,

medicine is rightly focused
on how best to try and treat disease

and cheat death.

Advances in medicine mean
we're actually quite good at this.

There's your detail.

Part of the time,
I work for Kent, Surrey and Sussex

Helicopter Emergency
Medical Service.

This job is about bringing the right
care to the severely-injured patient

as quickly as possible,

to ensure the best chance
of survival.

Slide. And we're going to go to
the patient's left, this way.

And once in the hospital,
this endeavour continues.

A nice big deep breath.

MACHINES BEEP

So, this is our resus bay.

There are six bays here,

where we receive the sickest
patients in the hospital.

They park in this bay over here,
which has everything you really need

for a bit of life support,
a bit of resuscitation.

That should cover us.

That's through the cord and it's
at the incisors at 22, coming out.

There's not a lot that you can't do
here, with this equipment,

but just because you can,
it doesn't always mean you should.

And that's where the decisions get
a little bit complicated at times.

Doctors, who spend their lives
treating critically-ill patients,

have a difficult balance to strike,
and it's never easy.

Nothing is black and white.
It's all shades of grey.

But when it comes to considering
ourselves as patients,

it's interesting to ask
what we would want.

I've gathered some of my colleagues
from intensive care

to get their thoughts.

I remember standing
at the end of the bed,

you know, in intensive care,
looking at a patient,

thinking about what I would want
if I were in their position.

That's really hard.

To what extent have you thought
about that yourself,

what you would want
for yourself in that situation?

Well, I've given my husband quite
strict instructions...

THEY LAUGH
..for what I wouldn't want.

What are those things?
What are those instructions?

Er...minimal.
THEY LAUGH

There's, er... Yeah.

Minimal? Yeah, to do, yeah.
I've, um...

Unless there was something
very acutely reversible

that it was clear why I ended up
in ITU,

then to...to let me go.

So, if it was a short, sharp,
reversible illness,

you're happy to go all-out? Yeah.

But anything more chronic
or drawn-out... 48 hours, max.

48 hours, max? Yeah.

I'm scared of dying.

I don't want to be in pain,
I don't want to suffer.

I want it to be quick.

I would not want to undergo
a prolonged period

of unpleasant intervention
on intensive care

unless there was
a reasonable expectation

that I could get back to something
at least approaching

the sort of lifestyle that I had
before I went into hospital.

You go into this profession
to make people better.

That's the sort of real reason
you want to go into looking after
people.

And people dying, almost, for me,

it took a long time to resolve
in my mind

that a patient passing away
wasn't a failure.

Doctors who want to do good often
think that the good being done

is by doing something.

And in effect,
they're subjecting us all to death

by a thousand cuts.

Because we are all dying,

we are all going to die,

and the question is whether or not
medicine is going to help or hinder

the quality of that passing.

Just to have treatments
because they're available

can end up being the worst
of all worlds.

But stopping treatments
doesn't have to mean giving up.

There's a whole field of medicine
with doctors who are experts

at helping people
at the end of life.

It's called palliative care.

The Velindre Hospital in Cardiff
is a trust

with its own dedicated
palliative-care team.

My name is Mark Taubert,
I'm a palliative-care consultant,

and I work in
Velindre Cancer Centre.

Part of palliative care is really
about improving people's symptoms.

Problems like pain, nausea,
vomiting, breathlessness.

So, palliative care is about
improving the situation

for an individual that is faced
with a very frightening prospect.

And we, as a speciality of
palliative care,

have a lot of no-nonsense,
frank conversations

that might revolve around

what expectations
an individual might have

and how they would see themselves
towards the end of life.

But nearly always, when I've sat
in a clinic with someone,

or I've sat on a ward with someone,

and we've had a really deep
and meaningful conversation

about the future, about wishes,
about views,

about certain interventions,

nearly everyone feels better
afterwards

for having had these frank
conversations.

Mark is taking me to see a patient
who has recently discovered

that her illness is terminal,

and she's now faced
with some crucial decisions.

Sandra needs to decide
if she should ask her doctors

to focus on intensive treatment of
her cancer

or on a better quality of life.

I sometimes find it a challenge
bringing up the topic of...

When you're faced with
your own death

and when you're faced with dying,

a lot of people don't want to talk
about that. No.

A lot of people feel very sensitive
and feel it's in bad taste.

It's understandable, because, I
mean,

it's something that none of us
want to hear. Mm.

As you say, it's not easy.

I wasn't going to tell my son
yesterday, but when he came down,

I thought, "Well, I have to tell
him at some time,

"so sooner rather than later,"
so I told him then.

Sandra's cancer is advanced,

and the chemotherapy she's been
having has failed to keep it at bay.

She needs to consider
whether pursuing intensive treatment

is the right thing to do.

One of the things we hope to be able
to do in palliative care,

and when we continue seeing you,
as well,

is help you in some of
the tougher decisions.

Many treatments
and many interventions are on offer,

and some can be very effective
and some can help,

but some come with drawbacks
as well, with side-effects,

and require hospital admissions.

And you may sometimes nearly feel
duty-bound

to go ahead with the treatments,
whatever the cost.

But I think what we'd like to try
and do is

explain the different options,
the pros, the cons,

and then help you make a decision.

That's... Is that further along
the line, or...?

At any point. Any point.
At any point.

And that goes for
chemotherapy treatments,

that goes for radiotherapy
treatments.

We're happy to support
you through all of those,

but equally, sometimes people say,

"Look, I feel awkward
to say this to the doctors,

"but enough is enough and..." Yes.

"..this is one treatment
I don't want to happen.

"I want to refuse this treatment."

And I can do that and still not be,

you know, penalised in any way?

No. No. No, not at all.

If they're not too invasive,
I don't mind trying them,

but if they're very invasive,
and it's sort of, 60/40,

I'd probably say no.

Mm-hm.

Sandra's dilemma is not uncommon,

but for many of us, as doctors,

it's often easier to do
what we know best,

what our core training
was geared towards,

to continue treatment
in pursuit of cure.

In a sense, with the way
that modern medicine is going,

we've got a big problem here
that we're not fixing.

It's very easy to give
the big treatments

and to just slot into this sort of
conveyor belt of big treatments.

Having a conversation about
what might be if you don't have
Treatment A,

but may opt for other approaches,
including palliative care,

is a longer conversation,

it's a more complex conversation.

And that's why, I think,
people nowadays still default
always to Treatment A,

the thing they're used
to prescribing, or giving,
cos it's just easier.

It's always easier, as a clinician,
to do something that feels active,

to feel like you're treating
a patient

for a medical entity actively,

and actually, that point
at which you are being gentler

makes things much more
complicated...

Yes. ..in many dimensions.

And when I say to them that someone
I knew in a similar situation

opted out of all chemotherapy,
opted out of all radiotherapy,

but had good, active palliative care

and had a very comfortable remainder
of their life,

they're often quite surprised.

It's impressive, really, to watch
Mark have a conversation like that

and tackle the issues head-on
without dancing around the subject.

And through that, I think,
he empowers the patients.

He gives some choices, he makes them
understand what they can choose,

and makes them focus on
what's important,

which is the quality, as well as
the quantity of their lives.

So, how well-established
is this approach to care?

I've come to the Cicely Saunders
Institute

to talk to a doctor who specialises
in palliative care,

Dr Katherine Sleeman.

I do remember those times
when we were both at medical school
together.

Just paint me a picture of how much

the art of palliative care
has changed

since you and I finished
medical school 20 years ago.

Looking back, I'm quite ashamed,
actually,

of some of the errors I made
as a junior doctor.

When I left medical school,

I wasn't even aware

that looking after patients
who were dying

was going to be part of my job
as a doctor.

As bizarre as that sounds,
there was just no priority on it.

And nowadays, it's probably only
about 20 hours of teaching

over a five-year
medical-school curriculum.

Which, I think, is not enough.

Medical students are kind of
whisked past

the beds of people dying from
ordinary diseases

in order to see a once-in-a-lifetime
clinical sign.

It's not a rare occurrence
that a junior doctor

will need to look after
someone who's dying.

And remember,
we're not just thinking about

the last hours or days of life.

The average person who dies
in this country

spends around 30 days of their
last year of life in hospital.

They're on cardiology wards
and orthopaedic wards.

The fact is that all doctors
will look after these patients.

It is possible to have
a good death in hospital.

However, that's not where
most people want to be.

But if not there, then where?

# Nellie the elephant packed her
trunk and said goodbye to the circus

# Off she went
with a trumpety-trump

# Trump, trump, trump. #

One place that people can turn to
at the end of their lives

is a hospice.

Visiting St Christopher's
immediately reveals

these places aren't what
we may think they are.

I come once a week.

I have my hair done, my nails cut.

As long as people want to see you,
you're OK.

If they don't, you're stuffed.

I shouldn't have said that,
should I?

I'm still naughty, you see. Yeah.

After all these years.

I want to go out saying,
"She was naughty to the end".

I mean, I don't know what people
think hospices are about,

but essentially speaking,
this is a place for living

and getting the most out of life
that you can.

So, the proposition is that you live
until you die.

So, it's kind of about
concluding lives

and it's getting the maximum
out of what remains.

That's the first thing, isn't it,
that everyone...

You say hospice, and you do
the word-association game,

and the word association
is death and dying. Yeah.

I kind of talk about decision space.

So, I talk about getting
the physical stuff out of the way

so that people can deal
with concluding their lives.

Because dying's not about dying from
a disease,

it's about dying from a life.

The real issue is,

"Can I get meaning
and can I get conclusion

"and can I get resolution
out of this life?"

Here is what we call
the Anniversary Centre.

And so, this is as much for families
and relatives and friends,

as it is for the people
themselves who are dying.

# Gone are the dark...#

Would you like a drink, sir?
A tea would be lovely. Thank you.

# It's going to be a bright
Bright

# Bright, sun-shiny day...#

One of the surprising things
about hospices

is that most of their patients
are outpatients.

We'll let you know when the film
goes out. Thank you.

Probably be next year.

Oh, good grief!
It'd better not be before I'm dead.

INTERVIEWER LAUGHS

You'd better get it out
a bit quicker than that.

People think of hospices
as places to die,

but for Rob, the opposite is true.

For him, they're places to live.

So, if we go down here,

the next thing
that's really important

is to rehabilitate
and re-enable people.

So, it might surprise you to
know that...

There's a gym.

Despite having chronic lung disease,

Michael McGee is determined
to keep himself active.

So, this gymnasium is helping me
gain my breath.

I've got to take it
relatively easily.

I mean, I can't do a four-minute
mile, for example. Um...

I mean, you can see, I'm not going
very fast and I can't go very fast.

I come here on a Wednesday.

First of all, it gives me a bit
of breathing space from my wife.

Secondly, I'm a bit of a pain
being under her feet all the time.

You get a nice meal in there,
all for about a fiver.

A meal and a pud. Not bad.

You also get a glass of wine.

When I think about the future, um...

I know I'm on
a short...short wicket. Mm-hm.

I do... I have worried about it,

but then I say to myself,
"What's the point?"

We've all got to have our end
to our life, but, um...

I suppose I can put a smile
on my face.

There are around 200 hospices
in the UK.

The care and attention they're able
to deliver is clearly excellent.

But improvements in care
usually come at a cost.

In terms of the health economics
of palliative-care provision,

there is now emerging evidence

that palliative care services

are either cost-effective
or cost-neutral.

So, they provide good value
for money.

There's also evidence
that palliative-care provision

early in someone's admission
to hospital

is more cost-effective
than providing it later.

So, people who got
palliative-care input

within a few days of their admission
to hospital

had, overall, much lower costs
than those people

who had palliative care provided
a little bit later.

There's also evidence palliative
care is particularly cost-effective

for people who have multiple
medical conditions.

And so there's a body of research
that suggests that palliative care

might be one of those rare things
in all of medicine

which is both better for our
patients and more cost-effective.

William Willoughby has just spent
time in hospital

before being transferred
to St Christopher's.

It's a different experience,
being in hospital,

than it is in a hospice.

Not that the...

feeling of care was lacking,
necessarily, in the hospital,

but it's far greater here.

There is a sort of understanding
of the needs of the patient.

Whereas in hospital,

I found that everything was
very hectic.

People didn't have enough time,

because there were so many things
going on at once.

The challenge of looking after
people who are dying in hospital

is that hospitals
are essentially there

for the reversing
of reversible disease.

So, when it comes to accepting or
recognising that somebody's dying,

the setting is not quite right.

Our emphasis, the services
that most hospices provide,

is on the life that is being left.

The life that somebody's leaving,

the life they're letting go of,

the life they're completing.

But hospices are still not
where most people want to die.

The majority of us want to spend
the last moments of our lives

in our own homes.

Well, I'm due to go home,

er...in a few days' time.

Er...so...er...

I'll be glad to get back home,
of course.

I've been involved with
St Christopher's for quite a while,

because my wife died two years ago,

and in her closing stages,

we had St Christopher's come in
to give her care.

And they...they were...they were
first class.

They were first class. Yes.

They couldn't have been
more considerate, more gentle,

and they were...they were...

They made it...they made it easy
for her to go.

And she died at home? Yes.

Is that something that was important
to her? Yes. Yes.

And it's going to be something
important to me, if I can make it.

Evidence shows that having
palliative care at home

helps to increase the chances

that you can stay there
until the end.

One of St Christopher's
consultant nurses

who works out in the community
is Nigel Dodds.

Tell me a bit about the lady
that we're going to see now, Nigel.

Brenda is a 71-year-old woman

with, um...metastatic
breast cancer.

She lives with her husband, Max,
in Peckham.

She, um...has ultimately come
to the end of all her treatment

and the plan is just to keep her
at home for as long as possible,

um...keep her as comfortable
as possible.

So, Brenda, obviously, I can see
that you're looking brighter

than when I saw you the last time.
Yes.

And your breathing's better,
as well.

Yeah, a lot better.

And how's your appetite?

Not that great. Right.

I'd like a bit of steak,
but I don't think I could chew it.

NIGEL LAUGHS

When someone first suggested
that the palliative-care team

come and see you,
how did you feel about that?

Did that worry you, or...?
Frightened. Frightened? Yeah.

Because what did you associate us
with?

Death, I suppose. Right.

That is frightening. Yeah.

But do you think that talking
about the things that worry you

has, in some way, helped to make you
feel less worried? Yeah, definitely.

Yeah, definitely. Yeah.

That would be how I see it, anyway.
Yeah.

Brenda, when you were at Guy's and
you saw the doctors and they said,

"Maybe it's time to think
about stopping the treatment,

"stopping the chemotherapy",
what was that like?

A relief.

Because that chemo was making me
feel so, so, so ill.

I was glad to get rid of it.

Yeah, it was making me agitated.

Yeah, you were very agitated.

And what was that decision like
to take, to...?

Once I'd made up my mind,
it was all right.

I don't go to bed
and think about it.

Because you were before,
weren't you?

Yeah, terrible. Yeah.

But not now. I don't think about it.

Why do you think you're feeling
differently about your future?

Because I've accepted the fact
that I'm dying. Right.

There's no getting away from it.

You just feel more peaceful
about that.

Yeah, I do feel more peaceful
about it.

Mm-hm. I can see that.

You...you look totally different.

I've had my hair cut.
NIGEL CHUCKLES

He did it yesterday. Yeah.

No, I want to be at home when I die.
Mm.

I don't mind going to your place...

..if you could book me a seat.

THEY CHUCKLE

They make you feel like home,
you know.

A nice place to be.
I never thought it was like that.

It looked like an hotel.
HE CHUCKLES

Would you say you're still managing
to, you know,

find enjoyment in things
from day to day, enjoy yourself?

Yeah. Yeah. Yeah, definitely.

I like my telly.

I did used to like reading,
but I can't read now

because I've got cataracts,

but they wouldn't do them,
because I was on chemo.

Is it worth having them done now?

I don't know how long I've got.

So, I don't know. I'll sit and think
about that one this afternoon.

I don't know...if it's worth
the bother.

Home visits like these,
to help with pain control

and other important symptoms,
can have a big impact.

People who receive palliative care
in the community are less likely

to frequently attend
emergency departments.

It can reduce symptoms,
reduce depression,

increase satisfaction with care.

They're more likely to be able
to stay in their own homes
and die at homes.

So, there's really a great wealth
of evidence to show the benefits

in terms of quality of life
for patients.

Most people I meet are
not afraid of being dead,

they're afraid of the dying process.
Mm.

Dying is inevitable for all of us.

I think if it's done badly,
it's...it's really bad.

And the kind of knock-on effect,
the domino effect,

for the people all around the person
who dies, lasts for...

You know, it can last forever,
really.

So, being able to give people
a decent end

feels like a really valuable thing
to do.

As I look more and more at what,
for many people,

is a death by a thousand cuts -

interventions, drugs,

blood tests, IVs,

losing hair,

organ failure
as a result of treatments,

what kind of dying is that?

What kind of living is that?

Mm.

Now, you may say, "That's fine,
that's the kind of living I want."

OK. OK.

It's very expensive
in one kind of way,

but it's also very expensive

in terms of the life
that you've perhaps denied yourself.

Because in the last six weeks
or three months of life,

you spend half of that time
in a hospital

and the other half of it recovering
from the hospital admissions.

There is an argument to say...

"Maybe I should just enjoy the time
that's left

"and do the things
that make me human...

.."rather than make my blood tests
better".

Palliative care isn't
about death and dying,

it's about helping people live
the best life they can.

And that's all the more important

when chronic illness has to be faced
early in life.

Junior is 26 years old

and suffering from
a neurodegenerative condition

that has left him having to breathe
via tracheostomy.

After two years spent
in rehabilitation and care homes,

he's just moved into his own place.

Yeah.

So if I said to you,
"What's important to you right now?"

So, you've set a goal
of walking more.

Yeah.

Yeah.

Absolutely.

For Junior, it's all about
being able to make his own decisions

about the care he receives.

It's about being in control and not
letting disease dictate his life.

Fundamentally, it's about choice,

and realising that that choice
doesn't mean giving up.

People might think that moving
to a palliative approach

is giving up or is doing nothing,

but, in fact, that's not true.

We need to start realising
that, actually,

palliative care isn't doing nothing,

it is doing something
really important for people

where there are no curative options
left.

If you change the focus of clinical
care away from the numbers

and away from the change
in the scan,

towards what's actually going
to make tomorrow better

or worth hanging around for,

then suddenly
you've turned the kaleidoscope.

You've changed a pattern of broken
glass that's horrible

into something quite beautiful,
potentially.

That says, I guess, palliative care
becomes much more

about the business of living
than it does about dying.

Yeah. Absolutely. Absolutely.

And that's what St Christopher's
is all about.

Above everything else,
it's a celebration of life

and of living that life
to its fullest.

I try to be strong in myself,

but it's the family
who are very stressed.

And so that makes me more stressful.

So, coming here is like an escape.

There's an arts-and-crafts room.

# Leaves, glorious leaves. #

THEY CHUCKLE

Can I do that one? Yeah.

So, you can make your own pattern.

And we could make our own cards.

You'd be quite good at it,
wouldn't you?

OK, I could make a couple
of Christmas cards, couldn't I?

I'll be dead by the time
I learn that!

THEY LAUGH

They even offer complementary
therapies, like acupuncture.

My balance, it helps the balance.

I've been losing balance recently.

OK. So, that helps a lot.

And all of this gives people time
and space to relax and reflect.

You could do that, couldn't you? No.

Or something like that.

No, I like this.
You're happy with the clay?

Yeah.

I've learned to accept it.

There's no miracles,
so I just have to take each day

and just be thankful for each day
I'm alive.

I've learned to accept it,
but my sisters and that haven't.

Nice deep breath.

It's stopped.

It's, er...more relaxed now.

Yeah.

I've insisted on getting some
make-up on before I get cremated.

Good for you.

SHE CHUCKLES
I want to go off looking my best.

THEY LAUGH
It's ridiculous, isn't it?!

And being at your best
is what it's all about.

And unlike in hospital,
there's a sense of community

and people with whom you can
share everything.

# Ah, oh, smokestack lightning...#

It's going to be played
at my funeral.

I'm getting a lot of...
It's got to be, "Oh!"

THEY CHUCKLE

It's one piece of music, is it,
Barbara?

No, it's a bit of...a bit of drama
going in, in the coffin...

..and then, stop! And then...

Howlin' Wolf. Howlin' Wolf?

As I go out. Brilliant. Fabulous.

It's got to be loud, hasn't it?
Try it on this piece of paper.

As you're going out.

SHE LAUGHS

No, I'll take... We'll take it off.

No, I don't even want to talk
about it.

Right.

Being here, in this hospice,

it's become abundantly clear

that it's actually, really, truly,

about life and living life
as fully as it can be lived

up until the very last second of it.

Every second of that life
being important.

Yeah. I don't want them
sitting there, going, "Waa!"

This is not the place we expect it
to be.

There's laughter, there's happiness,
there's celebration, um...

And it is a place in which
the team here

do some of the greatest good
that can be done for a patient

at any time in their lives.

It's very clear to me
that palliative care
improves your quality of life,

but what's the evidence
of its impact on quantity of life?

Is there always a trade-off between
living longer and living better?

Bye!

Katherine Sleeman has
been researching how to improve
end-of-life care.

People can worry, um...that
there has to be a trade-off

between quality of life
and quantity of life.

People understand
that palliative care might help

improve their quality of life,

it might improve
their physical symptoms.

But they worry that they will be
giving up on, um...

fancy medical treatments
and therefore,

they will reduce their overall
quantity of life left.

That palliative care will
essentially hasten their deaths.

And there's quite a lot of evidence
coming out now

from randomised controlled trials
that that's not the case.

Yes, palliative care does improve
people's quality of life,

but in some circumstances,
palliative care even improves

people's quantity of life,
so there's no trade-off.

And that's something of a revelation
for me.

Palliative care isn't necessarily
an either/or choice.

I thought it would be.

And it's something Rob George sees
in his hospice, too.

The evidence from early
palliative-care interventions

in things like lung cancer,
er...actually improves prognosis.

I'll say that again.

Early palliative care for people
with certain kinds of cancer

actually improves prognosis.

That is gobsmacking, really,
isn't it? Yeah.

That actually, what outperforms
all of that in the end

is holistic, decent care in the
right setting, with the right focus.

That's absolutely correct.

And this means that the focus
of palliative care

isn't always on the end of life.

For some,
that means high-quality care

over a long period of their lives.

Back in Cardiff
at the Velindre Hospital,

Mark Talbot has invited me
to sit in on a consultation

with a patient he's been seeing
for years.

Alison has advanced bowel cancer.

How important has this part
of your...

I guess your care, your treatment,
been - the palliative care team?

Oh, it's been very important,
um...because it's given me

that opportunity to really talk
about the difficult stuff.

We've had some fairly
frank conversations about death
and dying, haven't we?

Mm. Mm. Um...

And we've talked about your wishes

and what treatments
you would consider.

Yeah. And what treatments
you wouldn't consider.

I'm at the point now
where I've decided

I'm not having any more treatment.

Mm. My second lot of chemotherapy
was horrendous.

Mm-hm. Um...

And, again, I was really poorly.

Um...it was after that, I thought,
"This isn't worth it any more".

Yeah. This, you know, six months
of being completely poorly...

Yes. ..wasn't worth, um...you know,
the amount of time left I had.

Mm-hm. I'd rather be well...

Mm. ..and perhaps have
a shorter period of time...

Mm-hm. ..than be seriously ill
all the time...

Mm. ..and maybe have, you know,
a couple of months extra.

And there's a big event to plan for,
isn't there?

SHE LAUGHS
Yes, my party.

Yeah. My 30th wedding anniversary.

I had a wobble just before
Christmas, saying,

"I don't know
how I'm going to get..."

Oh, I'm just going to cry again.

"..how I'm going to get there." Yes.

Um...it was kind of like,

"What I do to make sure
I get there?" Yes.

But I'm confident now that I will
get there. Yeah.

And we'll have, you know, we'll have
the celebration and, er...

I'll have done everything
that was important to me

over the last four years,
so that's brilliant.

A lot of emotional and physical
energy goes into having treatments

as anything else.

And the investment, physically,

in going through some kind
of treatment does have a cost.

And that may be one of the reasons
why the early involvement

of palliative care appearing to give
us a survival benefit

is that people can invest
that energy

in the things that matter to them.

So, they're not wasting the energy
coping with the treatments,

they're actually using the energy
to complete their lives.

Often, I think in the past,
palliative care was analogised

with the last days and weeks
of life.

And certainly, I think,
over the last 10, 15, even 20 years,

that has very much broadened.

So, there are patients that I have
been seeing for ten years.

Yes, their risk of
a sudden event happening

and their risk of a sudden death
is significant,

but it doesn't mean it's going
to happen at any point
around the corner.

So, it's really a different approach
to try and focus

what is important to the individual.

So, improving people's symptoms
so people can get about,

do their thing and get to
their special moment.

We've had individuals who've wanted
to go to music concerts.

They perhaps want to go to
a football game or rugby game.

And actually, improving
their symptoms and breathlessness

so that they can achieve that
is making a bad situation,

a challenging situation, less bad.

What I've seen over the last few
months has shown me

that we can approach death
in a better and more positive way.

But, even in a perfect world,

the decisions we take
at the end of life are never easy.

Professor John Chester
is a cancer specialist.

And when it comes to the sorts
of decisions that one makes

about when to treat, how to treat,
what to treat...

Yep. ..what is that like?

On the face of it, sometimes,
I guess it must seem like

it should be pretty black and white,
but...

It may seem like that.

Needless to say,
there's more to it than that.

You've got to take into account
the possible benefits which,
in some cases, are huge,

but also the potential costs,

which, in terms of side-effects
and so on, can be significant.

And the great difficulty and,
if you like, the art of my job,

rather than the pure science
of my job,

is around balancing those good
things and bad things.

Not everybody we treat
will be cured.

Not everybody we give
the treatment to

will have the side-effects
and the toxicities of them.

The thing that I think most people
know about cancer therapies

is that they are hard,
that they make you feel awful,

um...and the benefits
sometimes questionable.

If you're talking to me as a
patient, what...what do you say to
me

to make me feel that any of that
is worth going through?

When I discuss treatment
with patients,

I quite often give them a simplified
version of the statistics
that are available,

but I have to say that statistics
apply to groups of people,

not to individual people.

So, I can give them a probability
that the treatment will help them,

but I can't tell them if it will
help them, as an individual.

And some people will take
a certain hope of success

that other people wouldn't.

So, people's treatment decisions
are based on their,

if you like, their own
interpretation of hope.

These are decisions
that Julie Hepburn has faced.

What was that like,
that first meeting,

where they were telling you what
the results of your tests were?

There wasn't a lot of discussion.

It was all sort of quite
well-laid down, I think,

what the treatment was
for my stage of cancer.

It was quite clear, I think
at that point, I would need surgery

and chemotherapy afterwards.

So, it was more information-giving
at that stage.

And what was the worst
of the side-effects for you?

The nausea was the worst thing.

Um...I remember days and days

of sitting in front of plates
of food and thinking,

"I just can't force myself
to eat that".

Or getting up at 6:00 in the
morning, because that was the only
time

that I really felt like eating
some cereal for breakfast.

And it was, um...you know,
it was a bit grim, really.

It's not really living,
it's existing.

But it turns out that Julie
would have been willing
to take a chance on a cure,

even if, to some, that chance
might have seemed quite small.

I had quite a good chance of a cure
- 50%.

Um...you know, even if I'd had
stage four

and it had been a 10% chance,

that would be enough to keep going,
as well.

So 10%, a 10% chance of survival,

you would still have gone ahead
with the chemotherapy?

Yes, I would.

And, John, I mean,
this is something...

You know, it's interesting,
isn't it?

10% might not sound like a lot
to us, I guess, as clinicians,

but for patients like Julie,

that's...that's more than enough
sometimes.

Absolutely.

Both personal experience
and published evidence suggests

that patients will often
take different odds

from what a professional would do.

10% might not be enough for a doctor
to make the same decision.

But for you, still, all of that
has still been worth it?

Oh, yes. Yes.
Because as far as I'm concerned,

I am cured of the bowel cancer.
Mm-hm.

For many like Julie,
a treatment with severe side-effects

is worth it, as long as there
might be some chance of success.

And it shows us that there's
no clearly defined line telling us

when palliative care should start
and other treatments should stop.

What we now realise
is that palliative care works best

when it's provided early
in the course of someone's disease.

So, 30, 40 years ago, actually,
it's true that palliative care

was sort of the bit that happened
after all the medicine had finished.

It was tacked on at the end,
really, when all hope was gone.

But now, um...our recent evidence
from randomised controlled trials

shows that palliative care
works best when it's provided early

and collaboratively.

So it's not either/or,
it's an extra layer of support.

The thing I've learned, I think,
above all, in making this film,

is that every second
really does count.

And in that is the opportunity
to achieve a better death.

To embrace the opportunity
to live your life

right up until the very last moment.

In the Netherlands,

there's a charity that tries to help
people do just that.

The Ambulance Wish Foundation
aims to grant people

one last wish before they die.

We do 2,000 wishes a year.

That's almost five or six a day.

270 volunteers help
terminally-ill patients

to fulfil their last wishes.

Ina Harding has cancer,
which has recently progressed.

And with the help of the charity,

she's making the most of
the time she has left.

The event for my mother is...

These efforts have inspired
charities in the UK

to set up similar services.

People are going to die.

You don't know how long they live
any more, but not so long.

And even then, they can smile and
they can laugh and they have fun.

It is very important
for the patients,

because they can die peacefully.

They let it go, everything's OK.

This is the most important thing
why we do this.

Over the last few months,
the people I've met,

the doctors, nurses, carers
and patients,

have changed the way I will think
about every single patient

I will ever see.

I've seen first-hand the importance
of being able to talk about death.

It allows us to prepare.

It helps us to grieve.

It may lead us to an acceptance
of what is, after all,

inevitable for all of us.

Finding an acceptance of death
can empower us with choice.

Allow us to stay in control

and reclaim the narrative
of our lives right to the end.

To die a better death.

In the end, it's about choices,

and there's no right or wrong
answer.

It's about what's important to you

right up until the last moment
of your life.

No matter how long or short
your life is,

there will be decisions to make.

Decisions that will affect
every moment of your life.

And I can't help but think

that we'll all make better,
informed decisions

if we start having
those conversations earlier.

Ina ends her day with a visit
to her grandchildren.

It's been almost a year
since Alison decided

to stop having her chemotherapy.

Alison went ahead
and renewed her wedding vows.

I'm pleased to say that I was one
of the guests,

and we spent the evening together,
with her friends and family,

in a beautiful setting,
in a little harbour.

And I just felt it encapsulated
what good palliative care is about.

So, what I think we need to
sometimes do in health care

is not see that the patient
is someone who, you know,

comes on to our health care teams
and then needs help

and then is discharged again,

but maybe we can reframe it
as saying that we become part of
their team,

to help them with the special
moments in their life,

to help them with the moments
that are meaningful.

# We can be heroes

# Just for one day

# And you, you can be mean

# And I, I'll drink all the time...#