Nurses And Social Workers: Kindness Amid The Chaos

We constantly hear reports of poor quality social care in the UK, but when Harry Ferguson’s mother was terminally ill he was astonished by the compassion and professionalism of her nurses and social workers

Hardly a week or even a day goes by now when we are not told about how awful health and social care is, especially for vulnerable older people. Yet there are other stories that need to be told and learned – like my experience of the superb services my mother received when terminally ill.

Mum was diagnosed with terminal pancreatic cancer 10 months before she died at the age of 75. It was always her wish to die at home, and my five siblings and I cared for her. The help she, and her carers, got was a wonderful mixture of the practical and the emotional. As the illness progressed and she became less mobile, occupational health provided more and more aids to assist her. The electric powered bed gave her great comfort, literally, as she no longer had to use her failing body strength to sit up in the bed. Eleven days before she died, a social worker visited and did a care assessment and, by that afternoon, a care package was in place.

It sounds so bureaucratic, a “care package”. But it couldn’t have been more humane and person-centred. Two care workers came in three times a day to move her in the bed and help with attending to her personal needs. My siblings and I were initially very worried that they might not take care of mum in the way that she would like. But mum was very positive about them from the outset. By now, it took two of us to lift her and make her comfortable, and we needed the carer’s expertise and practical wisdom.

District nurses had been coming in from time to time for months, but in the final two weeks were doing so daily. A specialist district nursing team also came in at around eight or nine at night. As with the care workers, it wasn’t just the range of their technical knowledge but the manner in which they applied it to mum and the relationships they developed with her that was so wonderful, and deeply moving.

Deep respect

They got on to their knees by the bed to address her face to face. They caressed her hand to comfort her. They always addressed her by the name she preferred and spoke directly to her, even when she was deep in sleep or apparently unconscious, and they never spoke about her as if she wasn’t in the room. They handled her weak body with deep respect and endeavoured at all times to allow her to make decisions about her care, even toward the end as she drifted in and out of consciousness. The most crucial issue was pain management and, no matter how weak she was, mum was always asked how she was feeling and consulted about whether to increase her medication.

The professionals behaved in a very human way, bringing in humour, rallying her spirit by telling her how much better she seemed on the few days she rallied. Some openly showed their feelings. I witnessed one nurse and a healthcare assistant crying as they left the room.

They also had to use great skill in dealing with mum’s carers, addressing our numerous daily questions with great compassion, patience and honesty. We were never given false hope, but nor did they offer predictions about how long was left. They “held” us emotionally and comforted us, especially around the issue of whether mum was in pain.

On a day to day basis, these interventions never lasted long, usually no more than 30-45 minutes at a time. It was not just the quantity of care that mattered but its regularity and rhythm, and the skill and humanity with which it was carried out. The professionals flowed in and out of our lives, leaving ripples of information, reassurance and love which ebbed through us throughout the day. And in the final week or so this was extended through the entire night by the soulful presence and expertise of wonderful Marie Curie nurses.

Finding a language through which this quality of care can be better understood, valued and developed is vital. In his book, The Renewal of Generosity: Illness, Medicine and How to Live, the sociologist Arthur Frank argues that best practice in health and social care requires that the most basic of human practices, such as touch, are infused with generosity.

“Care is enacted in gestures that can console far beyond what they accomplish as practical components of treatment,” he wrote. “For touch to console and thus to heal, it must be more than efficient. Touch must be generous, seeking contact with a person as much as it seeks to effect some task. Generosity is the resonance of touch, endowing the act with a capacity to give beyond its practical significance.”

Generosity and consolation define what professionals brought to my mother. Iconic images of this include the district nurses caressing mum’s hand and talking to her while she slept, and the sheer skill of the women care workers. This was despite their high workloads, scandalously low wages and the fact that although car use was essential, these carers were getting the same mileage allowance as 20 years ago. It was through stories like that that we glimpsed some of the chaos and demoralisation that threatened their generosity. Their true achievement was to be so humane in the midst of chaos.

Demoralisation

The professionals managed to do this in a big town in the UK where resource allocation and pressures on staff were probably no better or worse than most places. Frank suggests that one way that workers overcome the demoralisation inherent to so many health and social care organisations is to aim for “moral perfectionism”. While knowing that they can never achieve perfection for every patient/service user, striving for it enables the face of the suffering person to be kept in view, keeps open a dialogue about their vulnerability and needs, and helps workers to do their best for this person in this moment.

This is not solely the responsibility of individuals. Organisations need to foster generosity by recognising, in Frank’s words, that “most of us require training in how to be generous to ourselves and to others . . . as well as training to recognise how we thwart our own attempts”.

As currently governed and evaluated, health and social care delivery places far too much emphasis on measuring the value of interventions in terms of targets monitoring whether certain tasks are performed. The nurses kept a case file by my mother’s bed that was entirely made up of technical information. This is vital information for the changing rotas of professionals to have, but how the quality of my mother’s life and death were enhanced and her last wishes fulfilled was kept invisible to the official bureaucratic eye.

For what really mattered was the creative fusion of the practical, emotional and spiritual in everything they did, fulfilling with dignity the deeply touching possibilities of care practices.

· Harry Ferguson is professor of social work at the University of the West of England, Bristol