You’re Looking Very Well
Page 21
While three quarters would prefer to die at home, people who are recently bereaved, and therefore have experience of death, are slightly more likely to prefer in-patient hospice care. There is a clear inverse relationship between where people say they want to spend the last period of their lives and where they actually die. There is significant variation across European countries as far as place of death is concerned, with some of the highest rates of deaths in hospital occurring in England and Wales. This suggests that the organisation of services plays an important role in determining the options that people can consider.
Health professionals must ensure that older people who want information about their diagnoses and prognoses should be given this in a sensitive and appropriate manner. Older people who wish to do so should be given the opportunity to discuss their dying and death. People at the end of their lives should be given a choice of where they wish to die, and how they wish to be treated, regardless of diagnosis. If older people are not in a position to make such choices, because of mental incapacity, decisions should be made in their best interests and in consultation with people who are close to them.
The old do commit suicide, but are not more involved in suicidal thinking than the young—thinking about suicide is most common in the 25–44 age group, though feelings of hopelessness are common in the elderly. Ageist attitudes can also be found in the language used to describe the end of older people’s lives, and in the description of the suicide of older people, which tends to be portrayed as heroic rather than as tragic. Indirect forms of self-destruction involve refusing treatment and food and are most common in care or nursing homes. Self-harm usually involves poisoning. Older men commit suicide more than women. Research has found that over half of older people who take their own lives were experiencing depression at the time of death. Men over the age of 75 have the highest suicide rate amongst all groups. For some, death can be welcome if the suffering is severe, and there is no hope of improvement. A recent study has identified illnesses which may increase the suicide risk. Depression, bipolar disorder (manic-depressive illness) and severe pain—but not dementia—were associated with the largest increases in suicide risk. However, several other chronic illnesses including congestive heart failure, and chronic lung disease, were also associated with an increased risk for suicide. The researchers also found that treatment for multiple illnesses was strongly related to an increased risk of suicide, and that most of the patients who committed suicide visited a physician in the month before death, about half of them during the preceding week.
In his book How We Die Sherwin Nuland gives a detailed description of a friend of his with Alzheimer’s and the serious effects it had on his wife. When he passed away she wrote: ‘And when he died, I was glad. I know it sounds terrible to say that, but I was happy when he was relieved of his degrading sickness. I knew he never suffered, and I knew he had no idea what was happening to him, and I was grateful for that.’ A friend told me about her 96-year-old mother and her 92-year-old husband. He was effectively blind and had difficulty going upstairs. Her eyesight was poor but she devoted herself to looking after him. She said he had so changed that he was now quite unlike the person she loved, and his peaceful death would be far the best for both of them. This, thankfully, has now occurred. Death can be a relief. This leads us to consider assisted death, or euthanasia.
Instead of suicide, would not voluntary euthanasia be much preferred? Euthanasia is the intentional ending of life by a painless method for a person’s alleged benefit. It is usually assumed that it has the individual’s agreement, even wish. There are some subtle differences which can have legal implications. Voluntary euthanasia is when death takes place with the patient’s consent, and is different from occasions when the patient has neither requested nor agreed. There is also a distinction between active and passive, the former involving lethal injection, and the latter simple medication or the withdrawal of medication. Assisted suicide is when the patient takes the last step and another person provides the means of bringing about the end of their life. Under current UK law euthanasia is classed as murder, but recently cases of voluntary euthanasia have not been prosecuted. Assisted suicide is legal in Holland, Switzerland and the states of Oregon and Washington in the USA. It is hard to for me to accept the ban on voluntary euthanasia or assisted suicide for the terminally-ill elderly—I cannot accept the reasons that are given.
In ancient Greece and Rome, euthanasia was an everyday reality for many people who preferred voluntary death to endless agony. This widespread acceptance was challenged by the minority of physicians who were part of the Hippocratic School. The ascent of Christianity reinforced the Hippocratic position on euthanasia and culminated in the consistent opposition to euthanasia among physicians. Proposals for euthanasia revived in the nineteenth century with the revolution in the use of anaesthesia. In 1870 Samuel Williams first proposed using anaesthetics and morphine to intentionally end a patient’s life. This led to much discussion within the medical profession, particularly as to how much autonomy should be given to doctors.
The elderly may be exposed to backdoor euthanasia under the Liverpool Care Pathway. With patients deemed to be terminally ill, and if they think the patient is near death, doctors can withdraw fluids and drugs, so the patient, while on continuous sedation is allowed to die peacefully. This seems an attractive procedure but there is some concern about this process, as when under sedation improvement in the patient’s condition cannot be detected, and the doctors involved are not geriatricians. The decision to withdraw treatment is clearly a complex one, but doing so can greatly reduce the suffering of both patient and relatives
Geronticide—involuntary euthanasia—is the modern term to describe the deliberate killing of the elderly because they are old. Julius Caesar is reported to have said that the Romans killed the old who wanted to die, as society was orientated to fighting, and to die of old age was shameful. It was common among some non-industrial societies, and the choice of some agricultural or nomadic communities with inadequate resources was to sacrifice the old. Not infrequently relatives and friends regard these acts as deeds of mercy, and the aged sometimes welcomed and demanded them. Hunter-gatherers are less likely to care for the old when they are less able to gather their own food. Australian Aborigines buried the old in a hole until only the head showed, and let them die. It was a custom among the Dinka tribe in Sudan to give live burial to the old. Bushmen in Africa valued the old for their knowledge and experience, but once they became incompetent they were neglected and could be put on an ox and sent to a remote hut to die. Among the Yaghan indigenous peoples of Tierra del Fuego, the old were cared for but put to death when their condition was considered, by general agreement, hopeless. The same occurred with the Koryak in northern Siberia. In some parts of Japan there was a custom of holding a ceremonial feast every three years, followed by deportation of the old to a sacred mountain to eventually die. Until recently, certain communities expelled old age people from their midst.
John Humphrys, a presenter of the Today programme on BBC radio, cannot forgive himself for not being able to help his father die. He listened to his old father’s cries in the confines of a mental hospital. Would, he wonders, he have done anything wrong if he had helped him die—actually killed him? When interviewed, he compared the rich who wanted to end their life and were able to go to Dignitas in Switzerland with a poor ill old lady who has no one to help her. He points out how terrible someone with severe Alzheimer’s can be for a family. Thousands of people wrote to him when he described his anguish over the death of his father, and he subsequently wrote a book supporting euthanasia. In their book The Welcome Visitor: Living Well, Dying Well, John Humphrys and Sarah Jarvis argue that our attitudes to death and how we handle it need changing as we are living so much longer. We need to plan our death so that there is a minimum of pain and anxiety. We can sign a living will, so that if we have a bad stroke or other very serious illness we will not be revived. Since the book
was published, a case before the Law Lords and new prosecution guidelines mean that relatives are less likely to fear prosecution in the future. I believe that euthanasia should be supported and it is unjust that relatives or carers who take a patient to Dignitas in Switzerland to end their lives should be liable to prosecution.
Baroness Mary Warnock, a supporter of euthanasia, believes we have the right to choose to die. This is particularly relevant to the old suffering from serious illnesses, especially if they feel they are a burden on their family. Many oppose this view and claim that one can have a good quality of life even with dementia. Patients with severe dementia may not be able to make rational decisions about death, so there could be a document a patient signs saying that when incontinent, very ill, and unable to even recognise relatives, death is preferred. Martin Amis is very pro-euthanasia: ‘My stepfather died horribly. I think the denial of death is a great curse. It was a lost battle and we all wanted to assist him.’ Many doctors do not support euthanasia, for while they are sympathetic and do not oppose it on ethical grounds, they do not want to be the killers. A majority of the UK public support assisted suicide.
All major religions teach that physical death is not the end, and for many older people and their families it may be important to help the transition from earthly life by performing religious ceremonies and rituals immediately before and after death. Some family members who are, for example, Catholics will insist on all possible treatments to prevent death and are totally against euthanasia. However, in spite of the right-to-life conviction, Catholic bishops have argued that it is necessary to weigh the benefits and burdens of life-saving treatments. Jewish thinking takes a similar view, and says there should not be attempts to prevent death when it is inevitable.
I am attracted to Trollope’s suggestion in his book The Fixed Period (1884), in which a colony near New Zealand need to deal with an ageing population. They decide that anyone over 67 must die and thus be saved from the problems of old age. I once proposed we all should have a gene which ensured painless death when we were 80 and that as everyone knew about this limited lifespan, it could be a great advantage to everyone. I have now increased that age to 85.
Perceived age and looking well, which are widely used by clinicians as a general indication of a patient’s health, are robust biomarkers of ageing that predict survival among those aged 70 and over, and correlate with important functional and medical conditions. So if you are told you are looking well, enjoy it for as long as you can. I find it difficult.
15. Enduring
‘And in the end, it’s not the years in your life that count. It’s the life in your years’
— Abraham Lincoln
In writing this book I have learned a great deal about the serious problems that face many of the old. In addition to the problems involved in how the old are to be cared for, I hadn’t known how many of the old are so poor, and that so many need major help. I also did not know about the extent of discrimination, and why compulsory retirement is bad for so many, or how serious are the problems of of loneliness. I am nevertheless very impressed with how some of the very old cope with their age and enjoy their life. For all these problems charities like Age UK play a most helpful role and need to be supported.
I have also learned much about the biological basis of ageing, which is full of surprises, particularly the key role of evolution—we are only here to reproduce, and ageing is the result of wear and tear that is only corrected until reproduction is over. There is still much to be learned about that wear and tear in cells but progress has been impressive. There is, for example, the need to understand why germ cells do not age. Even so there are the remarkable systems in many animals whose activation can increase longevity, such as the one involving insulin signalling. Their role in human ageing is less clear. There is at present no real evidence for any way of making us immortal or significantly increasing our lifespan to, say, 150. And would we really want that unless the effects of ageing were also absent? Much more important is to find ways of reducing the effects of ageing, particularly illnesses like dementia. Politicians need to give much more attention to the problems of the old than they currently do, though the Department of Health has issued a Prevention Package for Older People. There is a strong case for there being a minister for the elderly. But for many the good news is that the government is to abolish the compulsory retirement age.
There are also major economic issues due to the ageing population of which I was unaware. For an overview I consulted Dr Richard Suzman, the director of the Behavioral and Social Research Program of the National Institute on Aging, National Institutes of Health, USA. We do not have a similar institute in the UK. His views, with which I agree, provide helpful conclusions to this study:
Population ageing is a worldwide phenomenon. We are on the brink of an historic watershed and transformation. Within maybe five years or so, for the first time in history, people aged 65 and over will outnumber children under the age of five. One might expect that this will be true for the rest of history, and the same will hold for the 65-to-under-age-15 ratio. Over the next few decades, the older population is expected to grow fastest in low-income countries. Countries age in terms of population structure initially when fertility declines and then subsequently as life expectancy increases. Few expect fertility to ever rise to its previous levels, and there seems no end in sight to increases in life expectancy. Because of the high fraction of immigrants and their high fertility rate, the USA is a younger country than those in Europe, in terms of population age structure. Low-income countries are ageing before they become wealthy, and China’s one-child policy accelerated population ageing. Population ageing inevitably will present each nation with a welcome challenge—how to provide for people in old age once they have left the workforce. The alternative—that no one ever reaches the age of retirement—is less inviting.
At a societal level, the core issue is economic. The extra years of life, welcome as they are, need to be somehow financed. This can be done in a number of ways: people can work longer, consume less during their lifetime, save more for old age, consume less in old age; governments can raise taxes on those still earning to support retirees (along with children, the other dependant members of society), expand the economy through increased productivity, encourage high levels of immigration of working-age individuals, etc. The important ratio is the fraction in the labour force versus the fraction being supported out of their earnings (coupled with any private savings and pensions—which hardly exist in some nations). Balancing these needs in a way that allows for continuous economic growth and the well-being of future generations is what it is all about.
Leaving aside the issue of combining population ageing with economic growth and solvency, I think it is probably more important to maximise health expectancy than life expectancy. Old age is powerfully associated with physical and cognitive disability, especially among the ‘oldest old’, those over age 85, one of the fastest growing age groups in industrialised countries. What is important here is that the relationship between ageing and disability is plastic rather than fixed and immutable. Over a 20-year period, the prevalence of disability in the USA declined by 25 percent in the older population, though the increase in obesity may be eroding and even reversing that very positive trend. The goal of the National Institute on Aging, a component of the National Institutes of Health in the USA, is to improve both the health and wellbeing of older people. As the science of measuring subjective wellbeing improves, I would also add the maximisation of wellbeing to the mix. There are very large differences in life expectancy across both regions and social classes in the UK, with even greater internal differences within the USA (a country that since the early 1980s has lagged behind other industrial countries in life expectancy). Addressing these major inequalities should be a high priority.
In a different way, the same holds for health. The creeping obesity epidemic is likely to result in high levels of diabetes and functional disability, whi
ch will increase the demand for expensive long-term care. Efforts—or perhaps I should say, lack of effort—today could have long-term consequences for the health of future generations of elderly. Currently, for example, there are no clear-cut and experimentally confirmed ways to prevent dementia and Alzheimer’s disease. The return on finding ways to prevent or delay the onset of these diseases would pay enormous dividends, both economic and in terms of wellbeing. A question I will pose, but not answer, is how governments should balance these issues against further investment in research addressing the problems. I hope that interventions that delay, prevent or remedy Alzheimer’s disease will be found within a few years. I hope that more governments in low-resource countries begin to think more seriously about their demographic futures and begin to set in place policies needed for the future. Barring disastrous new diseases, I suspect that life expectancy may increase faster than many official predictions. I fear that growing obesity will counteract some of the positive trends we have seen towards lower levels of disability in the older population. At the level of both the molecular and the whole organism, we only partially understand the process of ageing. But it is not impossible that researchers may stumble on interventions that slow down the ageing process in humans without other negative biological consequences. This would have major consequences for people and societies.
Seven out of 10 people aged 65 and over believe politicians see older people as a low priority, and the former UK health secretary Andy Burnham has said the NHS must be re-engineered to cope with the demands of an ageing population. More care is needed, and much of this could be moved into the community. Something has to be done to prevent the elderly selling their homes and using up their savings. In a scheme worth considering, everyone who could afford it would pay into a state-retirement insurance, and then receive complete cover for their problems as they aged. Age UK is challenging the government and all political parties to transform the ageing process by ending pensioner poverty, banning all forms of age discrimination, and ensuring older people can access better-quality care and support.