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