FIONA MURPHY was acclaimed as Nurse of the Year in
2011 for her work in end-of-life care, setting up the Royal
Alliance Bereavement Service for the Royal Bolton Hospital NHS
Foundation Trust.
The service has extended to cover both Salford Royal
Hospitals NHS Trust and the Wigan, Wrightington, and Leigh NHS
Foundation Trust, and she is now presenting her model of care to
other trusts as another way of ensuring "best practice" for all
hospital deaths.
"With five minutes' quality, our families will never
forget us; with five minutes' poor quality, our families will never
forgive us," Mrs Murphy says. Her work has dramatically improved
the way that patients and families are treated, and allowed people
more choice about how they die. Families are kept fully informed,
and are involved at each stage, including after the death.
Although hospices still set the gold standard for
care of the dying and their families, many hospitals have taken up
the challenge to improve. After all, most people cannot die in a
hospice (part of their success is that they are small, and
independent of the NHS, to a greater or lesser degree).
Most people die in hospital. The introduction of the
Liverpool Care Pathway (LCP) was a revolution in hospital thinking:
its aim was to use the same approach that hospices and
palliative-care teams had developed over 20 or 30 years; and to
ensure - quickly - that every person dying in an NHS
hospital would have equal access to that level of palliative-care
expertise and compassion.
It was an ambitious aim, but had the customary
problems: managing change in a large organisation, communication,
and training.
A 180-degree turnaround was also needed, in order to
introduce the qualities needed for compassion (personal
involvement, flexibility, risk-taking) into organisations which
perceive the opposite qualities as essential to their success
(scientific objectivity, equality and objectivity, rigidly applied
and tested procedures, and risk-avoidance).
Add to that a disconnect between what it is like to
be at work on just a normal day, and the utterly disorientating
experience of dying, or watching someone you love die, and the
deeply personal and often unexamined and unexpressed thoughts and
feelings that everyone has about death.
Perhaps it was inevitable that the LCP failed. Its
death, which evoked cheers - and tears - now means that every trust
has to develop its own ways of addressing the opportunity to
ensure that death is not simply a medical event.
PERHAPS the single most important key to Mrs
Murphy's success has been building good communication into the
system. Hospitals, like any organisation, must have systems,
although one criticism of the LCP was that the word "pathway"
evoked a rigid system rather than the checklist of humane prompts
for staff that it was designed to be.
Mrs Murphy set up "stakeholder groups" - meaning
anyone who has any involvement in a service - which meet weekly.
This means that every death can be reviewed, and lessons learned;
new ideas discussed; and the staff can support each other in what
is, after all, extremely distressing work.
Another of her innovations has been to think more
widely about
the process of dying, and all the people involved. Many hospitals
have palliative-care multi-disciplinary team meetings, but those
invited are nurses, and perhaps a doctor, and allied
health-professionals, such as the chaplain, physiotherapists,
dieticians, bereavement specialists, and so on.
Mrs Murphy also invites organ- and tissue-donation
specialist staff, porters, domestic staff (many patients say that
it was the cleaner who could speak their own language - sometimes
literally - who made all the difference), and mortuary staff.
The volunteers who make the tea, push the mobile
shop, look after the flowers, and provide the essential befriending
that many patients need in order to thrive and get well, are not
forgotten either.
"I've been a nurse for 27 years, and I'm very
senior," Mrs Murphy says. "I'm aware that we dictate a lot. I
absolutely believe that if we empower staff on the shop floor, then
they will own it, and make it work.
"It's giving them permission to break the rules, and
letting them know that I'll support them fully, as long as the
patient is at the centre and heart of what they are doing. Then
porters or domestic staff will take the initiative to do something,
like make a bereaved family a cup of tea, because they know they
are allowed to. This was the missing link in hospital care, and
it's fundamental."
Including these people has led to measurable
improvements, such as more donations of organs and tissue (eyes,
skin, and bone) being made. Bereaved families are now able to help
with the care after death, accompanying the body of
their loved one to the mortuary if they wish.
One of the porters at Salford commented that he feels
listened to, for the first time, and they have made real changes to
their own way of working with patients. A cleaner expressed her
amazement: "I never realised I could talk to a bereaved
family."
Another key innovation is including "outsiders" who
are part of the system we have developed for coping with death:
police and coroners, and community nurses, who can support
patients who want to die at home, or in nursing homes.
Mrs Murphy has also involved others, such as children
from schools specialising in learning disabilities, and the
supermarket chain ASDA, which provides attractive "memory bags" for
a patient's personal effects; so that the last tangible links that
friends or families have with their loved one is not taken home in
a hospital bin-bag.
NONE of this is difficult; but part of the challenge
of caring well for peoplein extremisis simply being mindful of
one's deepest intention. A simple "Dignity in death" sticker used
throughout Mrs Murphy's hospitals remind staff about their
commitment.
The response has been good, from an experienced
nurse, who said: "Fantastic team spirit - knowing what we have
achieved and are still achieving with continuous support for
bereaved families; I will carry the skills learnt throughout my
career," to a more senior nurse: "I thought that I did end-of-life
care well; now I know how to really support and give patients and
families control in a uncontrolled situation."
Albert Rudd is one of the appreciative relatives.
"Initially, I was very apprehensive about being referred to the
bereavement service at the hospital, but then decided to pursue
this opportunity. I met up with Fiona Murphy and her team in April
2013, and my doubts were alleviated immediately.
"I found that the bereavement
service was a blessing for someone in my situation. The team are
hugely comforting and reliable,
and I feel that other people will benefit from using this
outstanding service, both now and in the future.
"Although many other services within Salford Royal
offer excellent standards, it is remarkable how a service that has
only been in operation for around 18 months can be as exceptional
as they are. The team are always there when you need them. They
listen, they are honest, and I cannot thank them enough for their
understanding and support."
Another relative, Angela Taylor, is also impressed.
The service, she says, is "here exclusively for you at
a time of profound inconsolable
loss . . . empathy, understanding, and the knowledge and
experience and guidance you need to enable you to cope at the most
tragic time."
INVOLVING people demands time and painstaking work,
and it is risky: the temptation is always to keep a working group
small. It saves time, and it also allows the group to form bonds
and a kind of in-house language and way of working. Keeping
confidentiality is easier, too.
But, as the LCP's critics pointed out, people often
feel excluded from the decision-making in hospitals, which fuels
distress and anger.
More positively, inviting fresh eyes and fresh
perspectives means a that a team does not become defensive,
stale, or forgetful. Keeping the borders between hospital and
ordinary life permeable means that abuses are less likely to go
unnoticed. And it helps to demystify death, which is healing for
us all.
Mrs Murphy knows that all this is risky, but she is
diffident about her own courage. "It's not my courage. It's the
people I work with, and we work for the most amazing families. They
have the courage."
https://www.youtube.com/watch?v=so6FgWp4QCE