simple question
and one that had a very big impact on me
the question was can I stay here and it
was being asked by my mother-in-law
Pauline
here she is Pauline was 82 years old a
much-loved mother to four sons and
grandmother to 11 her husband had died a
few years earlier and she was living on
her own in a village in the new forest
busy with the WI tending her garden and
looking after friends and family a few
months earlier she’d noticed a drop in
her weight and stamina medical tests
showed that she had cancer which had
already spread to her liver
she started treatment but after three
cycles of chemotherapy the side-effects
from making her life a misery so she
stopped and she rallied again for a
while but then she became weaker until
she got to the point when she was
struggling to look after herself and she
made the decision to move to be nearer
to her family so she came to stay with
us thinking she might find a care home
nearby to be in she never wanted to be a
burden none of us had been brave enough
to ask Pauline what she wanted none of
us had broached the d-word den we were
all too busy tiptoeing around it and
just reacting to changes in
circumstances rather than looking ahead
and making plans together and that
included me I’m a GP with many years of
experience but with my own dear
mother-in-law I hadn’t had the courage
to ask her what do you want what are
your fears or worries where would you
can I stay here answer yes of course
not for long complicated conversation
but it was one that told us all that we
needed to know it was crystal clear what
we needed to do so Pauline came to stay
with us and we looked after her until
she died peacefully in the night three
weeks later we had wonderful support
from friends and family from carers and
nurses and from the palliative care team
people came and went often and we had
great gatherings around the kitchen
table sharing memories love and support
but it was exhausting
both physically and emotionally in fact
looking after Pauline was the hardest
thing that I have ever done but it was
also the biggest privilege I’ve ever had
after this experience it struck me
getting care right at the end of life is
so important we only have one chance and
so often we don’t like to talk about it
we don’t want to cause upset or pain
we’re very pretty but at work I’ve seen
it many times when a frail person
becomes acutely unwell and the ambulance
is called and they’re rushed to hospital
for treatment and often this is
successful but there are many times when
it hasn’t been and treatment is
escalated even though it’s futile we
find it very hard to acknowledge that
death is inevitable eventually and many
of us feel uncomfortable talking about
it including some health care
professionals sitting down and talking
with some of my older patients I’ve
discovered that although some would like
to go to hospital if it might help them
if they’re ill many others are
completely clear but they never want to
go to hospital again if there’s a viable
alternative even if they may die sooner
hospital can be a really scary place
these people would prefer to be cared
for and to die at home in familiar
surroundings with family and friends
nearby retaining their dignity so while
times are calm we can sit and talk and
make plans about what to do in the event
of a crisis to avoid having to make
decisions in the heat of the moment and
we call this advanced care planning now
time for a little bit of background a
hundred years ago in the UK death was
more commonplace it was part of life not
really hidden away and death often came
quite suddenly with accidents or
infections or in childbirth but nowadays
people are living a lot longer and we
see a different pattern on this graph
the vertical axis represents our general
level of health how well we are and the
horizontal axis represents time over
months and years and we can broadly
divide the decline towards death into
four different categories the first one
sudden death
a catastrophic event like a heart attack
or an accident completely unforeseen and
somebody dies this happens in about 10%
of deaths second group we see in
terminal illnesses like some cancers
when the person’s general level of
health can sometimes be maintained at a
high level for some time after diagnosis
until their condition deteriorates over
weeks or months quite rapidly and they
die like Pauline and this is seen in
about quarter of deaths
the third group accounting for a third
of deaths we see a variable decline over
months or years and this is in chronic
organ failure like kidney failure heart
failure or chronic lung disease when
their episodes of illness from which
the person usually recovers but never
getting back to their previous level of
health and they will eventually die
during one of these dips but it can be
very difficult to predict which one
so death can still come as a bit of a
shock the fourth and largest group is
characterized by a faltering decline
over several years and we see this in
the physical frailty of old age and in
dementia when the body’s ability to
respond to the inevitable health
challenges just diminishes and this is
the largest group 35% of deaths so we
can see that for most of us there will
be plenty of time to look ahead and make
plans before it’s too late
but we can never assume that we will
know when death is near because there
isn’t always an obvious terminal illness
period nowadays death is often hidden
away in nursing homes and hospitals it’s
less familiar to us
and we find it harder to talk about
we’ve lost our vocabulary to do with
death and people often refer to it
obliquely I’ve lost my dad or she passed
away or he gave up the ghost we find it
awkward and embarrassing talking about
dying in death and we pretend that it’s
not going to happen but we’re immortal
and sometimes we just fail to speak the
truth to our loved ones which isn’t
always very helpful the reality is that
not many of us are spoken about what we
might want at the end of our lives why
well I think for many of us death just
feels too far off right now oh I’m too
young to worry about that I know when
the time is right or others are just a
bit superstitious if I write my will
then I will die but not only are we all
going to die yes I can guarantee it but
many of us will experience the death of
somebody close to us and there is no
magic for me
to knowing when it’s the right time to
talk about dying and then the most
important thing is to have that
conversation before it’s too late
how many of us might have thought oh I
really should talk to so-and-so about
all this but you know I don’t want to
upset them you might be relieved if they
were to reply oh I’m so pleased people
what the subject I’ve been wanting to
talk to you about this for a long time
but you know I didn’t know how to start
I didn’t want to upset you and how many
of us might have brushed aside
somebody’s attempt to raise issues like
this maybe saying they want to be buried
rather than cremated wither ah don’t be
so morbid you’ve got years left have you
told anybody what you think you’ll want
has anybody tried to tell you what
they’ll want well there’s a lot to talk
about and not all of this will resonate
with you right now or be a priority for
you but it might be important for
somebody close to you so have you
considered writing a will or sorting out
finances if you have dependents children
or a cat who might look after them
if you die and have you considered
appointing somebody to speak on your
behalf
if you ever get to the point where you
can’t make decisions or communicate
those decisions for example if you have
a stroke or get dementia
do you want to take steps now to refuse
certain medical treatments in the future
like artificial ventilation or tube
feeding or resuscitation if your heart
stops beating do you want to donate
organs after your death and if you do
end up needing to be looked after at the
end of your life how might that look for
you and do you have strong feelings
about where you would like to be when
you die you
may even want to share ideas about your
funeral it’s a lot isn’t it and
depending on what matters to you you’ll
need to find the right people to talk to
whether that’s a trusted friend or your
family a solicitor or your doctor but I
want you to know that telling others
what you want at the end of your life
can be one of the most loving things you
can do for those close to you because it
can bring clarity it can avoid confusion
and family conflict it can help to
prevent unwanted medical intervention
and it can help you to stay more in
control towards the end of your life and
maybe feel a little karma at that time
so talk know your plans write them down
and tell someone where to find them or
take even more practical steps
let me introduce judy judy is an old
friend of mine
and over the past 20 years she’s had
some very close fades
she’s been seriously unwell but I’m glad
to say that now she’s a lot more stable
and she lives alone with a bit of
support from friends and family she
really enjoys going out joining him with
things in fact she loves a good game of
Mahjong now some time ago Judy thought
hmmm if my heart were to stop beating I
wouldn’t want people jumping on my chest
to restart it in giving me electric
shocks I’d want to be allowed to die
naturally so he went to see her doctor
and she asked for a do not resuscitate
form to keep at home but ever practical
Judy thought what happens if I’m out and
I collapse because my heart stopped and
the paramedics come but there’s no form
to be seen so she took a bus to high
wycombe and she visited the tattoo
it’s right at the bottom I don’t if you
can see D and R do not resuscitate
let’s take inspiration from Judy let’s
talk make vans and share them and then
get on with living life to the full
right to the end who do you need to talk
to you thank you [Applause]