Most people are unprepared for the shameful reality of how they could die, warns the author of a new book charting the social history of dying.
Although the majority of people imagine they will grow old and die in their sleep, surrounded by friends and family, one in five people will die what previous generations would consider a ‘shameful’ death - alone, ravaged by dementia and without dignity.
The deaths of more than half of the population will be ‘managed’ by medical professionals following serious injury or ill-health, with a small proportion dying suddenly, and often unexpectedly.
The rapid increase of the shameful death is being fuelled by an ageing population and a lack of foresight over how to deal with the ultimate consequences of the medical advances which keep people alive for longer.
“Most people think only fleetingly about how they will die, and usually it surrounds some romantic notion of dying in our sleep at home,” said Allan Kellehear, Professor of Sociology at the University of Bath and author of the new book A social history of dying (please note - this is NOT an academic text).
“This notion couldn’t be further from the truth; we are significantly more likely to die a lonely prolonged death in a nursing home or hospital, preceded by multiple organ failure, pneumonia or dementia.
“As we live longer, there is every chance that we will outlive those friends and family who would have traditionally seen us through our last years. It is also likely that we will have exhausted the financial means by which we would pay professionals to look after us instead.
“Dying today is becoming increasingly tragic and antisocial.
“The way we die is important because it is the last act of life, and plays an important role in how our friends and relatives will remember us.
“Some people spend years dying, and for many of the one in four of us who currently end our days in a nursing home, those last years can be like a living death.
“The way we care for our dying is a true reflection on how a society cares for its people; and it has to be said that the way we treat our dying in developed countries around the world is truly shocking.”
A social history of dying charts the experience of death from the remains of the early humans through to the experiences of people today. Kellehear has used on his own research on the topic and has drawn on human and clinical sciences literature of dying from around the world.
“The early humans mostly died of predation, but as soon as settlements sprang up, we started living longer but dying of the diseases that affect our farmed animals,” said Kellehear.
“From then on we see the emergence of two main kinds of death: the ‘good’ peasant death surrounded by friends and family and the ‘well-managed’ death overseen by shamans and later medical professionals.
“Today, although people still expect these kinds of death, medical advances and a growing dementia epidemic mean that we experience a prolonged death.
“Taking so long to die when you are so old that you become confused, unmanageable and unrecognisable to friends, makes the way we are likely to die uncertain.
“For governments and policy makers the best solution to this problem has been to build nursing homes - some people describe this as the final solution.
“When we interview nursing home residents through our research, they tell us that they feel they lead useless lives, are a burden to others, have no future, and suffer psychologically and physically.
“The care people receive in nursing homes continues to receive major criticism, not just in the UK but around the world.
“The most common concerns surround lack of attention to the cultural needs and cognitive status of the residents; their former lives are all but ignored.
“The fear of abandonment expressed by so many elderly people is frequently realised in full at many of these institutions.
“After two million years of dying characterised by well-patterned and well-understood partnerships with community, family and specialist health workers – the act of dying now appears to be disintegrating.”
For Kellehear, it is no surprise that some people take control of the only component of their dying over which they have any measure of control – the timing of their death.
He believes that increasing numbers of elderly and terminally ill people will turn to suicide in order to take control and manage their own death.
“There are approximately one million suicides per year world wide, and the largest age-related grouping is for those over 80 years of age,” said Kellehear.
“Old people intent on suicide seem very serious about their decision to die; they are less likely to give a warning, and are far more likely to complete a suicide than other ages. (50 per cent of over 65s who try to kill themselves through suicide succeed in doing so, compared to 25 per cent in younger age groups.)
“This is not about the well-publicised individuals who insist on their right to die, this is about ordinary older people who do not want to face disability, pain, cognitive impairment, and loss of bodily and social autonomy and dignity that old age can bring.
“When asked, respondents to a survey on why they might not want to live to 100 said that being a burden to others, losing the ability to be active and useful, losing the ability to think and reason clearly and the desire to avoid prolonged suffering, were the key reasons offered as to why finding the right timing for death was important.”
Kellehear believes that governments and individuals need to tackle the issue of how we care for the dying before it becomes a major crisis.
“Whether it is introducing more liberal policies that enable people to better manage how they die, a closer examination of medical ethics, better training for nursing homes or support for people who care for elderly – something needs to happen,” said Kellehear.
“We need to tackle the subject of dying head on. Talking about dying, let alone our own death, is not a popular theme for politicians or public debate, but there is no escape from the tragedy that will befall many of us when we die.”
A social history of dying (ISBN 978-0-52169-429-2) by Allan Kellehear is published by Cambridge University Press and is available in bookstores.