NHS end-of-life care has been crippled by a marketised mindset that sees everything in terms of its economic value
from: The Guardian, Monday 17th October 2011
Half of all hospitals are failing to meet basic standards in care for the elderly. The Care Quality Commission’s recent findings are, shockingly, no shock to anyone. As a letter to the Guardian the following day pointed out, these were exactly the findings of a report commissioned by the secretary of state for health in 1998. Thirteen years later, nothing has changed. Outraged reports accumulate on the shelf, gathering dust.
Extraordinary advances in medical technology continue, but we make painfully little progress – even some signs of deterioration – in something much cheaper, and surely much easier in healthcare: the quality of relationships. As the commission’s chair ruefullycommented, “kindness and compassion cost nothing”.
Inevitably, the report prompted soul-searching in the days afterwards; many members of the public described very painful stories of the care their elderly parents received in their last years.
Joan Bakewell, interviewed on Radio 4’s Today programme, pondered the impact of the decline of religion, asking who now teaches kindness as she learned it in Sunday school.
It’s an interesting point, but sadly not one I suspect that stands up to scrutiny. Religious institutions have been revealed to have a patchy – and that is being charitable – record on kindness. No, I think there is something very important at stake here that is not about secularisation but about marketisation – how all our patterns of thought are now modelled on the transactions of the market.
“What do I get out of this relationship?” is now regarded as a perfectly legitimate question, as if relationships are simply a kind of investment portfolio. The language of trade, finance and commerce has infiltrated how we understand our lovers, our friends, our neighbours and those for whom we work. Social capital, social skills – this is using the language of the market to describe relationships and the values and the inspiration that sustain them.
Much of this marketisation has neatly reinforced individualism’s aspirations to freedom and autonomy. But there is a problem. It’s blindingly obvious and yet ignored: it doesn’t give a full account of human experience. There are large chunks of our lives when we are either being cared for or we are caring for others. Caring for others cannot be totted up according to a calculus of cost and returns.
Dependency – others on us or us on others – is a central part of life. It is not something to be ashamed of and avoided at all costs. Care cannot always be easily shoehorned into the gaps in a busy life of consuming and working. This is why ultimately this cultural pattern of marketisation is so cruel: it makes shameful what is an inescapable part of human experience. It denigrates and belittles the qualities needed to care, such as patience and gentleness. Worst of all, marketisation ensures that everyone arrives at the challenge of being a carer with an almighty shock, and often a sense of “Why did no one warn me?”.
That’s what having children felt like for me. I felt I had been ambushed by something for which I was totally unprepared emotionally: the 24/7 dependence of a child and how that compromised all my aspirations to independence and achievement.
Now, it feels my age group is being ambushed again; we are all wondering and worrying about how one cares for elderly parents, how one deals with their dying and deaths. Their needs are often far more unpredictable than, but just as emotionally fraught as, the first experience of parenthood.
All of this hits women particularly hard because their socialisation for centuries has been bound up with expectations to care; only in the past few decades have some of those assumptions been unpicked.
But in their place, marketisation’s model of care is to buy it at the lowest possible cost. It says everything about our culture that caring is paid so badly and requires minimal training.
Compare how the two forms of care have been treated over the past 20 years: there has been a gradual and grudging reluctance to make the adjustments necessary to care for children (increased leave and part-time working), while the care of the elderly in an ageing society has been doggedly postponed – we simply don’t want to think about it.
Care for children fits into a marketised understanding of relationship: we talk of “investing” in our children. The state sees children as important because of their future worth to the economy as labour. But in this marketised mindset, the elderly have no economic value; they are perceived as a burden. The only values ascribed to the elderly are found – as recently celebrated in some grey power list – in silver-haired celebrities still working such as David Attenborough.
That’s a harsh form of exceptionalism in a culture of implicit contempt for the elderly’s frailty, dependence and intense vulnerability. What we have lost is the perception of the value of human experience beyond the busyness of the peak years of life; something captured by Milton in the final line of On His Blindness, “they also serve who only stand and wait”.
As the numbers of elderly increase and their last years are dominated by chronic ill health, their care will become ever more demanding in terms of resources and time. But tackling the policy implications is dependent on challenging these deeply ingrained cultural attitudes.
There is another set of reasons why we don’t find it easy to talk about the care of the elderly: many of them are in the final years of their lives. They are living very intimately with death. And that is the one big taboo of our age. We are the opposite of the Victorians: we are very open about our fascination with sex and very closed about death.
So, many of the elderly end up in hospitals – many with conditions for which there is no cure – and face only a protracted decline. A health system fixated on cure and prevention struggles inadequately with the process of dying, with the needs for kindness and comfort rather than for complex medical intervention, and with dying’s enormous repercussions for relationships. A fifth of all NHS beds are taken up by end-of-life care at huge cost, yet surveys show that hospital is often the last place where the frail and dying want to be. It is also where people are often most dissatisfied: more than half of all complaints to the NHS are about end-of-life care.
What we have lost is any concept of honouring the elders, respect for their frailty, and recognition that supporting their final years before death is important for all of us – that death is a part of what makes all of our lives meaningful.
This is what Steve Jobs so bravely articulated in his remarkablespeech to Stanford graduates in 2005 when he put death centre-stage. First, he referred to death as “useful”, and then he went on to remind his audience about something that these young adults were probably reluctant to acknowledge on the day of graduation: that they would all age and die. It is the one universal human experience. And, finally, he claimed that death “is very likely the single best invention of life. It’s life’s change agent.” Coming from an inventor fascinated by change, there could be no higher praise. It’s the kind of insight which challenges the cultural blindness which is crippling our capacity for compassion.