Last week I attended the Greater
Manchester Health and Care Board meeting. The meeting was held in the wonderful
surroundings of the Manchester Town Hall Council Chamber. It was a well-attended
meeting with representatives from the partner organisations, the elected Mayor,
and the Executive Officers of the GM Partnership. I was able to catch up with a
number of former colleagues and friends. The agenda was impressive, but what
was more impressive was hearing the voice of those ‘expert through experience’.
This was a new approach to the meeting, and it was one I very much endorsed. The
detailed papers were taken as read, so no time was wasted by rhetorical
presentations of what we had already read – I am thinking of adopting a similar
approach to my monthly Quality and Safety Committee meetings at Wrightington,
Wigan and Leigh NHS Trust.
One of these presentations really
held my attention. It was a presentation to accompany an update report on
progress made with the Greater Manchester Framework to improve Palliative and
End of Life Care. This week is Dying Matters Week, so it was more than
appropriate to receive the update. There was a great deal of information I was
unaware of. Each year 1% of the population die. In the last 12 months, 23,866
people died across Greater Manchester. 48% of these deaths were in hospital;
23.5% in their own home; 18.7% in a care home; and 6.1% of deaths were in a
hospice. 75% of these adult deaths occurred in the context of old age, living
with multiple long term conditions, and/or specific illnesses. Cancer accounts
for 25% of all deaths.
Many of those that die in
hospital actually have no clinical need to be there. There is much evidence to
suggest that most people would not choose a hospital as their preferred place
to die. We also know that health and care costs increase dramatically in the
last 90 days of life. As a consequence it’s estimated that as much as 20% of all
health expenditure is spent on end of life care. The GM EoLC framework
addresses these issues and also a number of others around information sharing,
access to specialist palliative services, variations in bereavement support
services and most importantly the use of Advanced Care Plans.
Many of us are uncomfortable
about talking about death, dying and bereavement. The consequence can be that
we might not sufficiently plan ahead in terms of wishes and preferences. When I
die, I want to be cremated, and have even planned what music I would like
played at my funeral, which I would prefer to be a humanistic one. If it were
at all possible, I would like a Viking Funeral a la ‘What we did on our Holiday’,
a great film that captures my wishes so well. My loved ones know these details,
and I trust them to carry out my wishes when I die. However, according to Tony
Bonser (North West Regional Dying Matters Champion) many people don’t make
plans, or feel able to exercise choices and preferences.
Tony was the ‘expert by experience’
who told us the story of his son Neil, who died from cancer, aged just 35. It
was a poignant story, even though he felt his son had a ‘good death’. Partly
because of this he was able to tell the story with humour and passion (you can
get a flavour of what I heard here). His son was diagnosed with cancer, had 2 major
surgical interventions, courses of chemotherapy and radiotherapy, with many
stays in hospital and visits to outpatients. All these treatments did not cure
the cancer and Neil died. Tony and his family didn’t understand the progress of
the cancer journey and this made making decisions and choices very difficult
for them all.
He reminded us all that what we
say to our patients and their families might be not what they hear. Good
communication is vital to ensure that people understand what is happening and
what it is they are being told. Tony gently suggested that some health care
professionals spend too much time talking and not enough time listening. I
couldn’t agree more. When I used to welcome our health and care students to the
University I would ask them to always make time to listen to what is being said
and in particular what wasn’t being said. In the busyness of clinical practice
this can sometimes be very difficult to do. However, effective communication is
the key to people being able to makes choices, and making choices is the
starting point in Advanced Care Planning.
Tony also asked us to remember there
is likely to be a range of communities impacted by individuals’ end of life
care and their death. All of us are, in lots of different ways, are connected
to others. Helping these others to understand end of life care, and work
through their feelings of loss is also an important task for us all.
Tony told how his son, in
conversation with a Macmillan Nurse, asked if could go home. He did not want to
be in hospital any longer. This was a day before he died, and it’s not clear if
Neil knew his death was imminent or not. The Macmillan Nurse was able to
arrange this despite it being ‘out of hours’ and not 9-5 Monday to Friday. For dying
people there can be no such thing as ‘out of hours’ care. Neil went home to his
apartment, surrounded by his possessions and things he loved. His family were
there when later that day, Neil died. His story should be an inspiration to us
all to ensure good end of life care is something that reflects an individual’s
choice around life, living and dying.
No comments:
Post a Comment