You’re Looking Very Well

by Lewis Wolpert

  According to the Institute of Medicine report in 2008, the elderly in the US account for more than one third of all hospital stays and of prescriptions, and more than a fourth of all office visits to physicians. The average 75-year-old American has three or more illnesses and takes at least four medications. Delivering optimal geriatric care has become a costly medical and ethical priority. Medical and nursing schools are, it is claimed, training far too few doctors and nurses on how to care for the elderly. At the same time, other workers, such as nurses’ aides and home health workers, remain under-trained and underpaid, the experts say. The number of doctors specialising in geriatrics has been falling. The US government has recently announced a new initiative to assist with housing costs for elderly and disabled people.

  Despite the best efforts of any government, the cost of the elderly is going to leave a gap in funding. Spending on care for the elderly will have to double over the next 20 years to cope with a surge in the numbers of sick and disabled old people. It was previously believed that the amount of time that pensioners spent being sick or disabled would remain constant or even shrink with the help of medical advances, but this is unlikely. Instead, many of the extra years will be spent being unwell and in need of care. Increases in the number of years of good health have not kept pace with improvements in total life expectancy. The number of sick elderly people, or those with disabilities, will increase by around two thirds over the next 20 years. The costs are frightening.

  Around 700,000 people in the UK spend more than 50 hours a week caring for a relative, according to Carers UK. A lack of facilities means one million family members already take time off work to care for aged or disabled relatives, while another six million take some ad-hoc responsibility for caring. By 2033 the number of people aged 85 and over is projected to more than double again to reach 3.2 million, and to account for 5 per cent of the total population, and so the number of carers needed will have to soar as well. Britain faces a care time-bomb within seven years, with the number of elderly needing full-time help outstripping the number of carers. Free personal care at home is available in Scotland but not in the rest of the UK.

  Public transport systems, especially fixed-route bus services, face important challenges in meeting the needs of the elderly for convenient transport. There is a need for wider pavements to make the roads and streets safer for older pedestrians. This could include dedicated pathways for electric wheelchairs, improved access points to public transit and commercial areas, along with special ramps or expanded parking spots for the ageing population. Yet more costs.

  In China, meanwhile, an enormous population is also ageing rapidly. By 2050 about one quarter of all Chinese will be aged over 65. This is one of the consequences of the country’s ‘one couple, one child’ family planning policy made 30 years ago. This puts China in a difficult situation. With a population of 1.3 billion—the world’s largest—and one that is set to peak at 1.5 billion in 2026, the authorities cannot afford to relax their tough birth control policies. But without more younger people, who is going to support the hundreds of millions of elderly? The percentage of elderly is projected to triple from 8 per cent to 24 per cent between 2006 and 2050—to about 320 million old people. It is almost certain now that China’s generation of only children will find themselves as adults trying to support two retired parents and four ageing, and possibly ailing, grandparents. Officials are already talking anxiously about the 4-2-1 phenomenon. How are those costs to be borne?

  In Japan in 1950 there were 97 centenarians and in 2008 there were 36,726. Reaching a hundred is no longer the miracle it used to be. It has one of the oldest populations; there are just 3.4 people working for each one over 65, and by 2050 the number will be just 1.3, worryingly few. Can the pension books be managed as fewer children are being born? Japan has the world’s fastest-ageing population and is very short of care for the elderly. It was estimated that 100,000 new carers will be needed by 2010; as the recession has caused much unemployment and 3 million are jobless, an attempt is being made to train many of these as carers for the old.

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  What of the future? The charity Age UK has an agenda for later life. Age UK is in partnership with over 300 local Age UK organisations and the overall budget is around £400 million, of which about £250 million involves these local organisations. They get about £50 million from insurance, about another £50 million from their shops selling clothes and mobility devices like stair lifts, and around a final £50 million from donations. I spoke to their chief executive, Tom Wright:

  Age UK has a very simple vision, which is a world in which older people flourish. Our purpose is to help to improve the lives of people in later life. We believe that an ageing society is one of the biggest challenges globally, but there is also an enormous opportunity as an ageing society brings with it decades of wealth, experience and knowledge which at the moment is not always fully appreciated. That is the challenge for us, being the largest organisation focusing on later life in the UK, and we have set out to deal with it. There are five important areas: money matters, wellbeing, care at home, work and education, and finally leisure.

  At present the most important is care. Living in your home is an area the government have not fully got to grips with. We campaign on all these issues and it is based on sound research and we have several hundred forums with older people around the country where we continually get feedback on issues that are affecting older people, day in, day out. And then we employ some of the experts in the different disciplines which allows us to go to the government and business with the best knowledge about the issues and to work with them to develop solutions.

  Many of the issues are interrelated but care and wellbeing is a very significant one. Wellbeing affects health and evidence from the research we do shows that activity helps in later life and prevents cognitive decline and depression, and can lead to less care having to be given. The new government has picked up on many of the manifestos and ambitions that we have sent to them. Before the election we laid out for all the parties what the key priorities are, and many of these have been retained by the new government. All the indications are that it includes getting rid of compulsory retirement at the age of 65. There will also be prevention of erosion of state pensions. They are putting forward a care commission to look at these issues.

  We do not focus on the illnesses like dementia and cancer that affect later life, but on the quality of life. We do work on cognitive decline and how mental abilities change. There is a study by the University of Edinburgh on a cohort of 1,000 in Scotland starting in 1947 from the age of 11. We do a lot of work on incontinence, which is an area that others are less likely to focus on, particularly infections of the bladder which are key contributors to incontinence. The tests for incontinence are not sufficiently given, and incontinence is also linked to dementia. We are concentrating on improving later life rather than extending life. We do not take a strong position on euthanasia one way or another.

  There is a sense that the old are put in a box labelled ‘old’ or ‘aged’ and there are many cases in medicine where the old do not get the necessary care because the condition is claimed to be age-related. A person going to a doctor, for example, and saying that he has a bad knee, the doctor would say that’s because you are old, and the person would say that his other knee is fine. With regard to care in the community, younger people get much higher budgets than older people. There is at times a lack of respect for the experience and knowledge of the old.

  Another important issue is that there are over 2 million older people living in poverty. And many would be pulled out of poverty if they took the benefits they were entitled to. This is partly due to the complexity of the process and the forms that need filling in. Half of those over 75 live alone and do not have someone to help them with this. We would like auto-enrolment which means that the government would automatically give you your entitlement. It is a complex area.

  14. Ending

 
‘Old men should have more care to end life well than to live long’

  — Captain J. Brown

  In 1965 The Who sang ‘I hope I die before I get old.’ When young, one thinks little about dying, but when old it is almost impossible to avoid it.

  It is not necessarily frightening, but something for which one must be prepared. We elderly are constantly asking ourselves what makes life worth living. Are we scared of dying? A good death requires us to retain control, know when and where it will happen, have pain relief and access to good medical care. Centenarians are apparently allowed to die quickly, but the 85-year-olds are not. The bioethical critics of anti-ageing research and radical life extension lament the fact that ‘we’ are unable to accept death. Bioethicist Daniel Callahan argues that we must learn to accept the idea of a ‘natural lifespan’, one that might reach its conclusion sometime around the age of 80, for then surely we have more or less had adequate time to enjoy our creative capacities, raise children and experience what life has to offer.

  How much is the chance of dying dependent on your age? Unsurprisingly, about 80 per cent of all deaths are of people aged 65 and over. Two thirds of deaths in England occur in people over 75. Taking all diseases together but not including accidents, in the developed world like the UK the death rate at 80 is 500 times greater than at 20. What causes this difference is not simply the ageing of our cells but many time-dependent processes. For example, with cancer there are many stages to be gone through, which take time. The same is true for many other illnesses, such as those affecting the blood system and the heart. It takes time for the vessels to become blocked. Fewer than one in 20 want to die in hospital, but nonetheless one in five do. In the UK, of those who were aged 65 and over when they died, about three quarters died in a hospital or in a care home. It is generally accepted that a supported death is preferable at home. Thinking about death may not be comfortable, but supporting people in the closing months and weeks of their lives should lie at the heart of the health service’s mission. The final year of life also accounts for a very high proportion of the costs of many people’s lifetime healthcare.

  Several social factors can influence when one dies. Those who expect to die soon do in fact do so, compared to those who have longer expectations. Individuals who are between 50 and 59 years old and from the poorest fifth of the population are over 10 times more likely to die sooner than their peers from the richest fifth. This and other key findings emerge from the latest results of the English Longitudinal Study of Ageing (ELSA). And in the USA, elderly Americans with low education levels are more likely to die from serious illness, suffer disabilities and experience a lesser quality of life than their better-educated senior citizens. They also recover more slowly from hospitalisation. The reasons for poor health among these people may have to do with higher levels of hostility and hopelessness, and being ill equipped to maintain health.

  How should one prepare for death? Should people, as Dylan Thomas asked, ‘Rage against the dying of the light’ or go gentle into that good night? Death anxiety is a common predictor of negative attitudes to ageing. For some it is the anxiety about the process of dying, and for others the uncertainty of what and where it leads to. There are many end-of-life decisions to be made: wills and, given the choice, where to die. It is very important that the old prepare their wills. A will is valid provided the testator understands it, and a delusionary state can invalidate a will. One can also make a living will and give medical decisions related to death to someone else, such as not being revived when very ill.

  Open discussion may not be possible in the final stages. We need to avoid having to make last-minute decisions if possible—death requires a lot of preparation. Two thousand years ago Seneca wrote, ‘He will live badly who does not know how to die well.’ This is so much more relevant now that we are living so much longer, and death can come much more slowly. At the age of 80, Churchill said that he did not mind dying as he had seen everything there was to see. Virginia Ironside also has a positive view:

  Death, like grandchildren, is one of the extraordinary new and exciting perks of old age. Over 60, it’s time to get acquainted with it. No use dreading it or being frightened by it. People are always wringing their hands when their friends die but frankly, what did they expect? That they’d live for ever? What you don’t want is to let death take you by surprise, or you’re going to be like people who find that when the car comes to take them to the airport for their holidays, they have forgotten even to start packing. Visit the dying. Look at dead bodies. Write your will. Face up to it. It’s an adventure.

  Carl Jung wrote that ‘it is hygienic… to discover in death a goal to which one can strive; and that shrinking away from it is something unhealthy and abnormal which robs the second half of life of its purpose.’ It is suggested that being reminded of our mortality can be a stimulus to a spiritual awakening. Barry Cryer from BBC Radio’s Sorry I Haven’t a Clue was asked when 74 if he feared death and replied, ‘No. I’m getting old, but it’s unreal. It’s meaningless. I don’t mean that I’m kidding myself, but age is just a number. I’m not afraid of death.’ Woody Allen said, ‘I just don’t want to be there when it happens.’

  Does ageing itself lead to death? A peculiar and quite difficult problem is whether anyone actually dies from old age, and the answer seems to be no. There is almost always a good medical explanation for anyone who dies when very old in terms of the abnormal behaviour of their cells and organs that gives rise to a well-recognised illness. However, death certificates can give the cause of death as ‘old age’ in the UK, and some do. This fits with the countless grandparents that are claimed by their relatives to have ‘died of old age’. They attribute an elderly person’s death to old age because no other obvious explanation emerges. But in the USA, nobody has died of old age since 1951, the year the government eliminated that wording on death certificates. There is a limit to the human lifespan, but in many cases elderly deaths are pinned on old age simply because no one looked very hard for the true cause.

  Autopsies of 40 centenarians who died at home, and seemed to be quite healthy, found a cause in every case. The very old are often felled by an infection or ruptures in the aorta, the major vessel that moves blood from the heart, and more than one factor often triggers death. While no one dies of old age, ageing does lead to the inability to deal with a disease that may be partly due to the ageing process itself.

  Some two thousand years ago Marcus Aurelius commented: ‘Mark how fleeting and paltry is the estate of man—yesterday an embryo, tomorrow a mummy or ashes.’ When does death begin? Perhaps at birth.

  Even if an illness is ultimately to blame for a death, it is often preceded by a downward spiral that renders a person particularly vulnerable to dying. More than two thirds of those who die over 85 are women who are suffering from lingering illnesses. Men may avoid going to the doctor and are accident prone. Falls are a major cause of disability and a leading cause of death from injury in people aged over 75 in the UK. The main causes of death over 65—heart disease and cancer—are the same for both sexes.

  The causes of death have changed. The leading causes of death in the US in 1900 were infectious diseases, but by 1940 they were heart disease, cancer and strokes, and by 2004 heart disease and cancer. Figures were quite similar for those in the younger age groups. Since the 1980s there has been a decline in death rates for the over-65s but none for younger groups such as those between 50 and 64. As we have seen, 80 per cent of deaths are of those over 65 years. More people now die as a result of chronic illnesses such as heart disease, vascular disease including stroke, respiratory disease and cancer. Older people may suffer from several conditions at the same time, which may make it difficult to determine the main cause of death. There seems to be little genetic influence on the age of death, as identical twins still differed by 14 years, while non-identical differed by 19 years. But, as discussed earlier, the APOe4 gene, which is linked to getting Alzheimer’s, is often absent in the ver
y old.

  In some cases older people may be transferred into a hospice for terminal care, which helps people to live as actively as possible after diagnosis to the end of their lives, however long that may be. In spite of the fact that about 20 per cent of older people die in care homes there has been little emphasis on the needs of older people dying in a care-home setting or how well these are met. In order to provide good care for people at the end of their lives, care-home staff need external medical support, particularly from GPs. Without this support, symptom relief may be poor and a resident may have to be transferred to hospital or hospice to die. Although this may be appropriate in some situations, there are inappropriate transfers from care homes. This can be traumatic for the older people and their families. The factors which can influence this process include a lack of forward planning, no knowledge of the older person’s preference, poor relationships with GPs and a shortage of resources in the care home. Several commentators have suggested that it is only by removing the taboo of the discussion of death, throughout all stages of life, that a better understanding of the realities of dying and death, better communication skills and ultimately better service provision will be delivered.

  Caring for someone who is dying can be distressing and demanding for carers, including family, and in the case of people with chronic illnesses this may extend over a long period of time. If the demands on carers become too great the arrangements for the care of the dying person may break down. In practical terms this means that the dying person may not be able to die at home, even if that is their wish. Carers need information and both practical and psychological support. Professionals need to coordinate the support they provide to both the dying person and to carers. Although the gap in life expectancy between women and men has narrowed, women are still more likely to outlive men. Bereavement and coping alone are thus much more common experiences for women than for men and are likely to remain so. Not untypically, one woman whose husband was in a home experienced guilt, sadness, shame, love, and resentment that he was still alive.