My interest in dying behaviour
began when I did my doctorate.
So my PHD was a
an interview-based study of
people with less than 6 months to live.
And I interviewed 100 people
who were mainly dying of cancer
and I’ve been doing that kind of thing ever since basically.
I still do two kinds of things,
I still do a lot of studies of the experience of dying,
how a behaviour changes when people know that
they have a short life expectancy
but I also develop public health models for its care,
particularly community engagement models.
My husband was diagnosed with bowel cancer
and I can remember looking at him and thinking,
“God he’s going to die, what am I going to do?”
Well Kevin had been ill and he was
admitted into hospital because they had found a lump.
Obviously we knew what the illness was then, cancer,
a professor, he explained you’ve got 3 to 5 months.
Our world stopped as we knew it there and then.
Believe it or not,
the experience of dying has positive dimensions
and that’s a very, very difficult insight to absorb
and a lot of my research, particularly my research in the last 10 years
has been about trying to
provide the evidence to show people that
that the end of life has some positive dimensions,
including love and happiness
and peace
and narrative wrap up, wrapping up the story of one’s life,
and personal insight and growth
and providing the evidence that these things exist and they exist
in the strong way in large numbers of people.
A lady up the road knocked on the door and said
“how is he, I saw the ambulance go”
and I said “you know Pam, he’s really really poorly”
and she said “well all I can do is offer you support”
and I said “thank you” and she said
“right let me come in your house
and let me have a look round for the washing”
and I said “no it’s alright” and she said “no, no,
if I ask you, you’ll say there’s nothing to do
so if I come in and look for myself I’ll see
whether there’s washing, whether there’s ironing.”
Dying is like every other major human experience, like love,
it has positive and negative experiences
and for the last 50 years the negative experiences have had overexposure.
Most people don’t really know why they do things,
so it’s better to look at alternative methods,
alternative ways of investigating the experience of dying and so I
embarked on a second half of work on dying which looked at
existing sources.
So my work has been campaigning
for palliative care services and national policies
and local government policies to engage
with work places,
with schools,
even with high streets and social media
to bring back public awareness,
increase public education,
increase community engagement and involvement
so as that people know what to say,
they learn what to say when people are bereaved,
they know how to offer practical support,
they’re not embarrassed and they know how to follow through
instead of just doing something initially.
They’re all the kinds of things that we try to do
and in public health we call that
building social capital
and a lot of my work and suggestions in policy and practice
are around how to do that.
The thing I’ve learnt most about death
is that the more you scratch at it,
the less you can find it.
The more you look for death
the only thing you find there is life,
it’s almost a paradox,
you expect to find a deadness somewhere,
but I’ve never found it.
People would knock at the door
asking me if I need any help with the children,
if I wanted any cooking doing.
And they’d sit with me through the night,
all through the night, every night.
And this is the community I live in
and they’ve been absolutely fantastic through all this.
Bit by bit I just thought what a wonderful street.