Not Dead Yet: A Manifesto for Old Age

Callahan and McHorney say they want a new science of complexity, which they believe is just beginning to influence research on successful ageing. But their emphasis on humility is welcome. Because this is not only about complexity – though that certainly is a part of it. It is also about talking to older people and finding out from them what they think successful ageing is. Because, as sure as eggs is eggs, it is very different from the scientific, biomedical model.

One key element that Ann Bowling and Paul Dieppe cite in their article, based on a huge literature review, is that ‘active engagement with life’ is a key component in successful ageing.16 (#ulink_505bebec-1f20-55d1-9197-3e5ca9933949) ‘Active engagement’ is pretty difficult to define too, but there are some key elements to it. Top of the list are issues to do with autonomy and perceived autonomy. For many older people, the last thing they want to do, if they can possibly avoid it, is give up their home. It isn’t that they necessarily love their own home, though many do; it is losing their autonomy that people so despair of, moving into a care home and not being allowed to take quite basic decisions for themselves.

If you have dementia, then there are relatively few alternatives if your family is unable to give you the care you need, particularly as the dementia advances. But with most kinds of physical frailty, people are determined to keep their autonomy, and will do a great deal to make sure they do so even if they do, sadly, have to go into residential or nursing care. That is why the best of the care and nursing homes do all they can to promote a sense of autonomy and give people a range of choices.

Along with the autonomy question – making decisions about when to go to bed and when to get up, when to eat, whether to go out or not, what programmes to watch or listen to – there are also questions about social engagement. The academic literature includes discussions about social, community and leisure activities, about social networks, support, participation and activity. But if you ask many older people what matters, as Stephen Moss’s interviews made clear, it is love: love of a partner, even one maybe now dead, of children and grandchildren, siblings, friends and more distant family, an interest in the world. Often success means dealing with the world after the death of someone you love, as Katherine Whitehorn describes in her wonderful autobiography:

Being a widow is not helped by also being old. It’s a relief, in a way, that my sagging curves no longer have an audience, but being on my own makes the prospect of being really ill and frail alarming. When I broke my wrist, there was Gavin to drive me to hospital and fasten my bra … Losing your husband has two separate aspects: there’s missing the actual man, your lover; his quirks, his kindness, his thinking. But marriage is also the water in which you swim, the land you live in: the habits, the assumptions you share about the future, about what’s funny or deplorable, about the way the house is run, or should be; what Anthony Burgess called a whole civilization, a culture, ‘a shared language of grunt and touch’. You don’t ‘get over’ the man, though you do after a year or two get over the death; but you have to learn to live in another country, in which you’re an unwilling refugee.17 (#ulink_ada29bc2-85f0-5c05-a3bb-526c5cc4291f)

Bowling and Dieppe cite the theoretical definitions of successful ageing as life expectancy, life satisfaction and well-being (including happiness and contentment), mental and psychological health and cognitive function, personal growth, learning new things, physical health and functioning, independent functioning, psychological characteristics and resources, including perceived autonomy, control, independence, adaptability, coping, self-esteem, positive outlook, goals, sense of self, social community, leisure activities, integration and participation, social networks, support, participation and activity. But they point out that there are a whole range of extra lay definitions, including accomplishments, enjoyment of diet, financial security, neighbourhood, physical appearance, productivity and contribution to life, sense of humour, sense of purpose and spirituality – none of which are mentioned in the ‘professional’ literature at all. When you look at the categories that lay people added, they are the things that make anyone tick at any time of life: food and drink, sense of humour, a sense of purpose and, of course – much misunderstood by professionals – a sense of spirituality.

Even without those additions to the literature, much of the research shows that many of the areas of successful ageing are interrelated. Having a large number of social interactions and activities and lots of relationships is associated strongly with greater satisfaction with life and with generally better health and functioning better. Despite considerable class differences in survival and different attitudes according to the numbers of stressful events in life – such as loss of a partner or even a child – there are ways to make it easier for people to age well on their own terms, and according to their own values. Personal values, individual experience and a nonprofessional perspective are all key to defining what successful old age is for individuals. But a large part of that is about the nature of life, relationships, love and the ability to act.

So you have to give three cheers to Ann Bowling and Paul Dieppe’s conclusion: ‘Health professionals need to respect the values and attitudes of each elderly person who asks for help, rather than imposing our medical model on to their lives.’

The tyranny of a definition

Dr Muriel Gillick, a Professor of Ambulatory Care at Harvard Medical School, wrote one of the best reflections I have ever read on the subject of centenarians:18 (#ulink_700b8919-13e7-5f6b-bf4f-c7700d128056)

Centenarians have something important to teach. Often they have wisdom arising from their accumulated experiences which they enjoy sharing, and which they are able to share because they aren’t burdened by multiple maladies, each with its own demanding regimen of pills, monitoring tests, and physician visits. Their world is the antithesis of the elderly community in Florida, which has developed a culture that revolves around their health. The average elderly Floridian sees multiple specialists, often making more than one physician visit each week. Gathered around the table while eating an ‘early bird special,’ they exchange doctor stories. When one member of the group reports that he has seen a new specialist – perhaps a rheumatologist has joined the ranks of his cardiologist, urologist, and general internist – the others eagerly add the new doctor to their own list of ‘providers.’ In parts of Florida, the state with the largest elderly contingent in the United States, Medicare spends more than twice as much per capita for health care as it does anywhere else. What its citizens get in exchange for this largesse is more hospital days, more tests, more ICU admissions, and more subspecialty consultations in the last six months of life, with no evidence that the additional attention improves the quality of care.

But Professor Gillick says there is another lesson which is even more relevant to the question of definition:

The usual claim is that centenarians remain robust until a catastrophic event occurs, at which time, like the ‘one-hoss shay’ of Oliver Wendell Holmes, they collapse completely. Centenarians are different from other people in that the ageing process has been postponed – at age 95, their organs are like those of a typical 75-year-old. But there is no reason to believe that their organs are programmed to fail simultaneously. The reason the centenarian dies from his pneumonia or his heart attack is that doctors do not aggressively treat their 100-plus-year-old patients – they do not routinely admit them to the intensive care unit, place them on a breathing machine, start dialysis, or initiate any of the other interventions that are commonplace in octogenarians. Centenarians die quickly because we let them, and the 85-year-olds die slowly because we don’t.

There are other ways in which our mechanistic definitions of old age undermine the health of older people. Far too many drugs are given to older people, quite inappropriately, wrote Dr Mark Copperfield, in his column in The Times, arguing that sensible older people refuse to take most of them, restricting themselves to ‘the pink ones that stop their joints from aching’.19 (#ulink_279c56e7-d861-565e-8300-a7e8de0c8c08)

But, he says, the trouble starts when they go into a care home, and matron insists on giving them the lot, promptly at 7 p. m., ‘with predictable consequences’. Meanwhile, others who have been there longer are falling like ninepins, going to the hospital, having too many of all sorts of analgesics, sedating drugs, antidepressants and whatever.

Sir Richard Doll, who discovered the link between smoking and lung cancer, died at 92 and worked long past retirement, told pensioners not to expect NHS time and money to be spent on research into prolonging life, and advised them to ‘live dangerously’. The alternative is that you will be defined according to a mechanistic definition of your age and treated accordingly.

Where we go wrong

So good health, and promoting independence, are key to any definition of being healthy for an older person him or herself. This sense of being in control, having the care we need and not being subject to other people’s ideas of what would be just right for us, is critical for a sense of autonomy and well-being. You might have thought this fitted quite well with the ethos of the times, given all the mantras we hear about a patient-led NHS. Yet neither doctors nor patients are quite sure.

The patient-led NHS, with its huge emphasis on patient choice – which has to be a good thing in most circumstances – seems to have forgotten about continuity of care, about a personal relationship with the GP, about the small things that matter more than being able to choose where to have some particular procedure in middle age. Older people may need any number of procedures. What they don’t usually need – or indeed want – is to have an isolated procedure done somewhere they have apparently ‘chosen’, apparently only on the basis of convenience or speed of access, but a long way from the care they get the rest of the time for their growing number of chronic conditions.

Diana Jelley, a GP in North Shields, puts this very well. There was a patient she had been looking after for some fourteen years, popping in to see her when she needed, a retired nurse who had had a heart attack aged 76 and whose condition gradually worsened over the years.20 (#ulink_405d534a-a00f-5c42-886c-4887dd5e0045) She was short of breath. She had heart failure. She had diabetes. 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, whenfigures 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 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

1 (#ulink_f868cde2-1d89-5088-abe4-e04a261b6d10) House of Lords Science and Technology Committee (2005), Ageing: Scientific Aspects.

2 (#ulink_a915fdb0-4c3f-54c6-9344-c0a3bb277b2f) Jill Sherman (2007), ‘Wealthy, healthy, and aged 85: the woman living ever longer’, Times, 25 Oct.

3 (#ulink_5d6205d9-0ada-5190-9f7f-ad4fa301200b)Daily Mail (2006), 8 Feb.

4 (#ulink_364f4c9c-5bc6-5e6b-abc3-71b6b23215ba)Guardian (2006), 8 Feb.

5 (#ulink_364f4c9c-5bc6-5e6b-abc3-71b6b23215ba) Ibid.

6 (#ulink_bc7a08a1-c11d-5191-88fc-13530b038776) Geraldine Bedell (2005), ‘The third agers’, Observer, 30 Oct.

7 (#ulink_d958b340-14f5-509d-8e8e-b0b404a77641) Stephen Moss (2006), ‘Life at 100’, Guardian, 18 Jan.

8 (#ulink_f42e5f08-dc1d-5b4a-9458-01d2e39bcf9e) Ibid.

9 (#ulink_e5a3af47-9df1-5c68-87ab-705a6c66b8c2) Mary Riddell (2006), ‘Longer lifespans are a bit of a grey area’, Observer, 12 Feb.