Summer 2010 - The British Pain Society

world, apart from someone who
is capable of giving them their
attention…” Simone Weill
Below I outline some examples of
what is possible if you actually stay
with that moment, and where it
might lead you.
A middle-aged lady with HIV/
AIDS had been abandoned and
shunned by all her family and
friends and was living in a flat on
her own with practically no human
contact. The medical consultant at
the hospice suggested everything
he could think of, like coming
to the day hospital, to ease her
isolation but she refused every
offer. Eventually for some reason
she consented to see me, and I
saw her regularly for the last few
months of her life. For much of
this time she was totally withdrawn
and refused to make any eye or
any other contact. There were
long periods of silence and her
only words were yes or no. I tried
everything, all my communication
skills, even music, that I knew.
Eventually she became very ill and
was admitted. After a few days she
was a little better and came to see
me and I sat with her, in silence,
for about an hour. At the end of
this time I once again asked her if
there was anything else she would
like and suddenly she began to
sing. I was completely shocked
and pulled out of my comfort
zone, but I started to play the
piano very quietly with her. At first
she sang without words and then
she started to use the Brownies
good night song:
Oh Lord our God
Thy children call
Grant us thy peace
‘til the sunrise…
Goodnight…Goodnight
(and then she started to speak))
Keep all our family in your care,
Love us all, as we know you do.
Still, Goodnight and God bless
to friends, family and those that
we love.
(and singing again)
Goodnight… Keep us in your
care.
Amen…Amen.
It was almost as if she was using
this as a ritual to say goodbye to
her family. When she finished I
looked at her and asked if she
thought she would die soon and
she said yes, very soon. In fact she
died the following morning. Music
was the catalyst to a resolution
that no clinical skill could bridge.
One of the things I think that
music does well is that it forces all
involved to listen. You can actually
hear people listening which
you can’t do in language: it’s so
immediate, we’re doing it at the
same time as each other – it’s a
very different frame in which to
be in relation to someone. I can’t
pretend to listen to someone in
this situation – I just have to listen
acutely to every note she sings
and improvise around that – we’re
just making it up together. I think
I would articulate that process, of
my interaction with another being
through music, as getting myself
out of the way. When she started
singing it was uncomfortable. I’m
human and my first reaction was
please don’t do that! But you can’t
invite someone in and then tell
them to stop. My craft ( a word we
are in danger of losing in modern
medicine) at that point was to use
music. Once I started to hear her
I played as I would with any other
musician. I don’t know if it made
a difference to the way she died.
I think in asking that question,
what was the evidence of benefit,
we are in danger of losing the
sense of the now and what’s really
important – the health system we
work in always wants to ask: did
it make a difference. It certainly
made a difference at that moment.
There are three levels of listening:
the first is personal. When I listen
to someone my first response
is always an intimately personal
one: what you say makes
me uncomfortable or makes
me want to cry or laugh etc.
Communication can be easy but it
can also be problematic for some
patients particularly those who are
awkward, vulnerable or even those
who produce negative emotions
in you, the listener. But you do
have a responsibility to them all,
the vulnerable difficult people, to
hold them and support them. As
a professional that’s not a very
good place to be in and often
we want to get out of it as soon
as possible, but we actually have
to do something. If I stay in that
first place, the easy clinical place
a lot is going to be about me. So
the next level is to listen to what
someone is doing and when this
lady started to sing, it gave me
a world, a space, where I could
join her. That was in music. I was
listening on that level. In order
to be there I had to pay attention
to what is going on between us.
Music lives in that space between
us – as lot of the arts do.
The arts can be used to help
people tell their life story, or
create a legacy they want to leave
behind. Another story concerned
an elderly blind Jamaican man
coming to the end of his life in a
care home. All his family were in
Jamaica, he had no visitors so he
was isolated in this bed and in this
room, just waiting to die. One of
our St Catherine’s team of artists
went to see him and he asked
her to set up a video to record
himself. The video was to be sent
to his family but also be seen by
as many people as possible. The
result was a moving account of
his life as the “black kid in the
corner.” It was also of a resilient
human being who had managed
to get through his life despite
what society had done to him.
There is an energy which comes
at the end of life and the tendency
for us to want to dampen it. The
soft pastel walls of the hospice
come crypt, the hushed tones
of a peaceful death. Anything
else is too uncomfortable. It is
too uncomfortable if people get
distressed.
Another woman with advanced
lung cancer, who I hadn’t met
until the last two or three days of
her life, had heard that I played
the piano. She had terrible
breathlessness. She asked me to
take her to my room, where she
indicated that she wanted me to
switch on my tape recorder. She
wanted to sing. She had the words
on a piece of paper, and sang the
whole of the song without oxygen.
She also asked for a copy of the
recording for her family. She died
three days later. Her last will and
testament was artistic.
A while ago I overheard a
conversation in the coffee area
between four young women, all
coming to the end of their lives,
bemoaning the fact that they
didn’t look good any more and
never would – their clothes didn’t
fit them because their breasts
had been cut off or their weight
fluctuated so much, they’d lost
their hair etc. I contacted the
London College of Fashion and
described the conversation with
one of their lecturers. He brought
a group of students to meet the
women. Each of them worked
with the students to design their
own outfit and choose materials.
Then they went up to the college
and made them. We decided to
have a celebration: we invited all
their families and got in a jazz
band. The women came down a
catwalk in their outfits and each
of them spoke. Another example
of how a visual and textual
artistic programme gave space
to an unwritten feeling or word
that may never have been truly
communicated and it lead to an
uplifting experience.
PAI N N E W S S U M M E R 2010 51