Not Dead Yet: A Manifesto for Old Age. Julia Neuberger
She had high blood pressure. She had high cholesterol; her liver function was poor; and every intervention designed to improve one area of her disorders eventually ended up making another one worse.
‘She is not the kind of patient who had the opportunity to fill in the “Your health, your care, your say” survey to inform the recent white paper on community care,’ says Dr Jelley. ‘But if she had been asked, I feel sure that continuity of care from a practice where everyone knew her was infinitely more important than the “instant access for routine care at any time” that seems to drive the White Paper’.
But then she was not middle aged, middle class and living in middle England. She rated the quality of her personal care very highly – from the reception team to the visiting nurses and general practitioners. I don’t think her view would have changed even if she had known that her care fell short in many areas of the Quality and Outcomes Framework indicators for which GPs receive payments as part of their contract. A few weeks ago she suffered another heart attack followed by a stroke, and never returned home. She died peacefully this week in a local ‘continuing care’ bed, at the age of 90. We had been on life’s journey together over fourteen years – the epitome of what I had hoped and believed general practice would be about when I began my training at medical school.
Last night, I opened her computer records to record a final entry: ‘Goodbye to a true friend – RIP (Rest in Peace).’ There are no longer any flashing alerts highlighting our failure to control her blood pressure, her ischaemic heart disease, or her diabetes. But then a smile overtook my tears. It was in true character that this generous spirited woman turned all the red entries green by dying just before the end of the financial year, when figures count towards GPs’ payment under this scheme.
I am not sure, as I approach retirement in another fourteen years’ time, whether we will still be delivering this kind of care to our patients – quality that is very much appreciated but so hard to measure. Quality that means patients are looked after by ‘my doctors and my practice’. Sections of the population quite understandably want a very different model of access and availability. But this focus may end up seriously eroding the delivery of long-term continuing care to the elderly and chronically sick. We are building our patient-led NHS. But sometimes I do wonder exactly which patients with which needs are actually in the lead.
It is not that older people just want to be able to choose everything for themselves, though they are no different from the rest of us in wanting control over their lives. It is that they want, when the time comes – when independence and choices are more difficult or impossible – to be able to have a relationship of trust with professionals who, ideally, they already know and to whom they have told those things that matter most to them when the going gets tough.
Call to arms
Who decides what old age ought to be like? Who measures it, and does it matter? The answer is that it almost certainly does matter, particularly given the wide disparity between ‘professional’ assessment and older people’s own views. The gap between how professionals measure successful old age and how older people do it themselves is hugely important.
It suggests that older people have a more holistic sense of ageing well. But it also suggests – as is so often the case with professionals – that those factors which are harder to measure are somehow left off the list. Yet for all human beings, young and old, a sense of purpose in life is critical, however hard it would be to define and measure it. The question is: If we were to work out what it might mean to satisfy all of these criteria, those cited by professionals and by older people themselves, what might successful old age look like? That is what I want to explore in the chapters that follow.
It is an urgent task because there is such confusion out there. We all feel relatively certain that we want more years, but very uncertain what kind of years are possible. I don’t want to die in my sixties, but I don’t necessarily want to live through my eighties 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