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.
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...#