Not Dead Yet: A Manifesto for Old Age. Julia Neuberger

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Not Dead Yet: A Manifesto for Old Age - Julia  Neuberger

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if my life is painful and meaningless. If it is all being done to me, or if I cannot process what is going on in my life, I might not feel that life is worth living. Especially if all I am able to do is watch game shows on TV.

      As we get older, we begin to look towards the end of our lives, and make these calculations. Older people often say: ‘I’m old.’ They often say what they want to do, thinking about what time they have left and working backwards to see how possible it might be. They are constantly making calculations about what makes life worth living.

      This isn’t an issue about whether to end life. It is a question of how to measure its worth – to the person living it – so that they can take meaningful decisions. The point is that we need to help older people find ways of making life worth living and, when they get really ill – as my father did – allow them to discuss how much they want to keep being patched up.

      But the tools policy-makers have for understanding these things, as we have seen, are very blunt. They use definitions which may be easy to measure but which are often completely irrelevant to individuals on the receiving end. Worse, they may use the tools of health economists – and their QALYS, or Quality Adjusted Life Years, the tools which purport to govern the rationing of healthcare – to decide about how to treat individuals.

      QALYS and other forms of measurement can be extraordinarily useful when it comes to setting policy about where best to concentrate public money, but they are completely useless for individuals. Policy-makers need to stand back from community decisions when they are talking about individuals, but as managers take increasing control of these decisions the room for manoeuvre given to the poor health professionals gets ever smaller.

      So that is what should go first into the manifesto: Don’t make assumptions about people’s age, and what they believe makes life worth living – and therefore what resources they need and deserve – and end discrimination on the basis of age. People are capable of doing and enjoying things until widely different ages. They are quite capable of working, and of making a unique contribution – even if it is just to those closest to them – for decades after the assumptions policy-makers make about them. This is a core message of this book. The manifesto also needs to include demands to:

       Give guidance to health professionals to ignore QALYS and focus on the individual before them. We have to give clinicians the chance to have a conversation with individuals and their families about their lives as they get older, to focus on what they feel is important, not what the policy says they should feel. The more we make our definitions of successful old age mechanistic, the harder it is for these conversations to take place.

      Many older people do not want much more money spent on them. They simply want to be able to live as good a life as possible, and health professionals need to be able to discuss with them the best that they can do – individually.

      Dumping QALYS as a tool for individual doctors means that they must take older people’s own definition of their health status more seriously than the so-called objective status calculation of professionals. Unless they have dementia, older people know how they feel.

       Force health and social care professionals to recognize the importance of love to older people, and make it deeply unethical to break or hamper people’s relationships. The separation of long-standing married couples when they were forced to go into workhouses was one of the main criticisms of the institutions in Victorian Britain. If we continue to divide married couples against their will because of shortcomings in budgets or institutions, then we have returned to that level of degradation. It is also extremely short-sighted. Nothing is more likely to hasten people’s physical decline, and make them more dependent on scarce services, than dividing them from those they love.

       Provide proper support for family carers. The role of informal family carers has had far greater exposure in recent years as a result of the astonishingly successful campaigning by Carers UK and others. Carers and family members, often spouses and partners, but also children and siblings, give years of unpaid service. They save the exchequer billions every year. If health and social care professionals took the role of carers seriously, and understood how important love is in thefunctioning of older people, then carers would be better supported, respite care would be available to give everyone a break, and further paid support would be provided when the old person went home again.

      Notes

      Chapter 1

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