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The Guardian - UK
The Guardian - UK
Politics
Patrick Butler

The mystery of good end-of-life care

Well, it's certainly goes against the grain, I thought, when I received Harry Ferguson's moving memoir of the superb social care his late mother received towards the end of her life.

At Society Guardian we habitually run accounts of care debacles. Neglect, abuse, indignity: these are the staple findings of the residential care home journalistic investigation. They make vivid, compelling and shocking accounts and always generate huge reader response. Alison Clarke's recent excellent and impassioned piece is a case in point.

This is not just a case of the media disproportionately favouring "bad news stories": poor quality care is, I fear, endemic, and a national scandal. But it was good, nonetheless, to publish what might be regarded as a "good news story".

What particularly struck me was Harry's appreciation of the emotional aspects of care: the simple human qualities of empathy, sensitivity, humour, generosity, patience, compassion.

It sometimes seems that the world of social care gets carried away with technical jargon: "care packages", with "quality standards" and targets that can be measured and benchmarked, boxes that can be ticked.

Politicians and policy makers often talk of "pulling levers" - the idea that they can engineer outcomes through designing a complex system of incentives, protocols, standards, training programmes and pathways. All are helpful - essential even - but they cannot work unless the act of care is underpinned by human relationship between carer and the person cared for: a relationship that cannot be measured, incentivised or recognised easily in contract specifications.

Good care is incredibly simple and strangely mysterious. Harry's account shows carers can give generously of themselves in ways that cannot easily be guaranteed by protocols or training, and often in paradoxical defiance of pitiful wages, workplace demoralisation and under-resourcing. It doesn't make life easy for policy-makers or time-and-motion consultants: you can't "pull levers" to ensure care workers take the time develop fruitful and sensitive relationships. Harry puts it perfectly:

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.

That's spot on. The questions are: how do you attempt to replicate that quality of care, how do you measure the unmeasurable, and does measuring matter?

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