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Why people nearing the end of life need the same protection we offer children

Care receiver. Shutterstock

Last scene of all, That ends this strange eventful history, Is second childishness and mere oblivion, Sans teeth, sans eyes, sans taste, sans everything.

Shakespeare’s Seven Ages of Man (from As You Like It) famously and effectively portrays humans in deep old age as returning to infancy.

But in many societies, the approach to end of life care requires us to continue as active and responsible citizens for as long as our mental capacities allow – to make choices about what kind of care we want, and where. In anticipation of losing capacity, people are urged to act responsibly and make preferences known in advance while they are still able.

This approach to policy has not of course prevented a series of elder care scandals in hospitals and care homes in Britain. That is because these scandals were not about lack of choice, but about neglect and abandonment: patients not turned over in bed, food being left out of reach, residents not helped to the bathroom.

Those with complex interacting conditions (typical of those without cancer who die in frail old age that most readers of this article will themselves face) too often get shunted around a complex health and social care system with, it seems, no one consistently in charge of their case.

As well as badly structured and poorly funded health and social care systems, an underlying cause of these scandals may be traced to a blind spot in Western democracies. The single-minded valuing of individual autonomy fails those whose deteriorating body or mind compromises this very autonomy.

Japan, by contrast, values amae, the pleasurable state of depending on the benevolence or goodwill of others – something we first experience as a baby. The English language doesn’t have a word for this, though it is intuitively understood by Britons who value a National Health Service which looks after people without cost or question in their moment of need. English does, however, have a word for amae’s opposite: abandonment.

Thumbs up for amae. Shutterstock

Terror at abandonment is, of course, a young child’s deepest anguish, even if the parent figure has disappeared for only a few minutes. Every parent knows this.

Child protection policies in the UK are underpinned by a double assumption: that children have a right to be listened to, and a right to care and protection, including protection from neglect at the hands of their carers.

British government policy demands we be on the lookout for child abuse. As I argue in my new book, it should similarly make the double assumption that people near the end of their lives may be seen both as autonomous agents and with a right to care and protection.

The right to be looked after

Society would then be as alert to the crime of abandoning those on the last lap as it is alert to denying them autonomy. But policy insists on always seeing adults nearing the end of life as responsible citizens and never as children, so we are not routinely on the lookout for abuse or neglect.

Neo-liberalism, meanwhile, continues to promote informed choice along with individual responsibility for health, not least at the end of life. So even as their bodies are falling apart, people are treated as self-determining consumers. Agents rather than patients, doing rather than being done to, whether or not that is what they want – and whether or not it leaves them more rather than less vulnerable.

I am not suggesting the frail elderly be infantilised, far from it. Every ounce of their autonomy needs to be respected, both in advance of and after losing capacity.

It may sound scandalous to see people nearing the end of life as we do children. But what causes actual scandals is the policy refusal ever to see them as we do children.

When I get to the end of my life, yes I would like to have as much autonomy as body, mind and resources allow. But I would also want, if need be, to be looked after, and have my right to care protected.

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