Even the cleaners

02 May 2014

Fiona Murphy's work in end-of-life care has been winning applause, says Terence Handley MacMath

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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

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