Does the end of life have to be hell? Rather than solely focusing on prolonging life, we need to address the problems of chronic bodily degeneration at the end of life.
Death is certainly not what it was. Life in the past was once described as 'nasty, brutish and short', but this would be a better description of death throughout most of history. The very shortness of life tended to mean that death too was short. People died either as children or in their prime, so ageing and the aged were rare. The most common causes of death were infections, violence or starvation. On the whole, death was rapid: people were fully alive one day, and fully dead the next (or at least the next month). There was relatively little grey area between life and death.
During the twentieth century the average lifespan in the world almost doubled, and people in ore affluent countries now tend to die old and slowly from degenerative diseases brought on by ageing. Until recently it was thought that humans had a maximum lifespan that we would hit at some point, as death from disease was eliminated. Many limits have been suggested, but each has been exceeded in practice. There is no sign of the rate of increase in lifespan slowing down, even in the countries of highest life expectancy. This suggests that there is no maximum human life span, or at least not one we are likely to hit soon.
That is the good news.
Unfortunately, this dramatic increase in longevity has been accompanied by no discernable change in the rate of ageing. People appear to age now at the same rate as they did two hundred years ago. But they live longer, and so they age longer, and to a greater extent, before they die. Consequently, the increase in lifespan has not been matched by an equivalent extension of healthy life: increasingly, the additional years of life we gain are associated with bodily degeneration, which translates into years spent with disability, disease and dementia. Between 1981 and 2001, life expectancy in the UK increased by four years, but healthy life increased by only two years, with the other two years being spent in ill-health. One cause of this is that the linear increase in lifespan is colliding with a roughly exponential increase in degenerative disease with age. For example, your chances of having Alzheimer's disease doubles every five years that you live beyond 65 years. One alarming result is that about 25 per cent of people in the UK currently get dementia before they die. And if current trends persist this figure is likely to rise to 50 per cent by 2050, simply because we are living longer. Thus one half of the UK population currently under the age of 40 years may get dementia before they die, unless we take dramatic action now. Are we taking action to deal with these trends? No - just the opposite: we are creating the conditions for such a social disaster.
The vast majority of people in the affluent world (and increasingly in the poorer countries of the world) die from degenerative diseases, such as cancer and heart disease. These diseases are caused by age, and dying from them is slow and is becoming slower, so that the processes of death and ageing are merging into one. Death is currently preceded by up to ten years of chronic ill health in the UK, and this figure is rising. Few people survive until death without significant physical and/or mental disabilities, extending over years. Death is no longer an event; it has become a long, drawn-out process. The fact that death is slower entails great challenges for ourselves, our societies and our health and care services.
Even in the absence of disease, old people progressively accumulate disabilities, including loss of sight, loss of hearing, and loss of mobility due to osteoporosis, arthritis, fractures and declining muscle strength. And even in the absence of disability, ageing brings decline in physical and mental capacities. Sight, hearing, taste and smell are dulled in everyone, and reaction times slow. Memory, IQ and linguistic ability decline; creative thinking falls off; mental productivity wanes; motivation and initiative fade away; while depression, anxiety and social isolation all increase with age.
None of this is good news, and there is no point pretending otherwise: it is one of the worst horrors of the human condition.
How did we get into this mess?
Our fear of death led us to prioritise quantity of life over the quality of life. Medicine has been oriented towards the postponement of death, no matter what the quality of life that remains. 'Life at any cost' has been the war cry, as society has attacked mortality and the acute causes of death without a parallel attack on morbidity. Huge resources are devoted to preventing infectious diseases, stroke and heart attacks in the elderly, which are arguably the least worst ways to die. Yet the consequence of these resource decisions are that people die by more protracted means, suffering years of dependency, isolation and poor quality of life. We now have the means to extend life beyond what is sensible - finding ourselves without the social, medical and political means to cope with and prevent degenerative ageing and the myriad chronic maladies associated with it. By attacking death at the end of life, we have allowed death-within-life to grow, so that the end of life is no longer worth living.
The suppressed dread of death has allowed our society to sleepwalk into a situation where people face real horrors at the end of life, simply because we cannot face dealing with the issue of how people should exit life. The ways in which we deal with degenerative ageing and those affected by extended years of illness add to the invisibility and lack of understanding of these issues. Extended, degenerative dying has generally been banished to hospitals, care homes and hospices. In hospital, doctors are bound to keep people alive at any costs, and the issue of how to care best for those with Alzheimer's, dementia and declining quality of life is inappropriately kept in a medical context, rather than being the subject of an extended social-political debate.
Medicine and medical research has had an unbalanced focus on mortality (i.e. death rates) rather than morbidity (years spent in illness). According to the 2003 World Health Report Global Burden of Disease, the relative contributions of different diseases to years lived with disability in the aged were: dementia (11 per cent), stroke (9 per cent), cardiovascular disease (5 per cent) and all forms of cancer (2 per cent). The proportion of research papers (since 2002) devoted to these chronic diseases reveals a starkly different ordering of priorities: cancer 23 per cent, cardiovascular disease 18 per cent, stroke 3 per cent and dementia 1 per cent. Thirty times as much money is spent on cancer research in the UK as on dementia research, yet dementia contributes five times more years lived with disease than cancer. Given these relative resource priorities, it is no surprise that cancer deaths are declining while the prevalence of dementia is climbing rapidly. It is no longer sensible to leave these resource decisions to charities and medical research boards. Society as a whole needs to have an informed debate about difficult questions, such as whether we should be reducing heart disease and cancer death rates, so that average lifespan increases towards 100 years, if that results in 80 per cent of us being cognitively impaired.
As a global society we have been remarkably successful at taming acute forms of death. Yet many acute forms of death have been converted to chronic disease or disability. Heart attacks have become heart failure; stroke has become vascular dementia; diabetes, AIDS and even some cancers have been converted from acute causes of death to chronic disabilities. All of these are great medical advances, but they have a downside: the conversion of acute (rapid) to chronic (drawn-out) death. There is a crucial economic aspect to this, as the creation of longer-living but sick patients has an up-side for the pharmaceutical companies. Of course drug companies do not set out to promote chronic disease-rather, the modern economics of drug development, through a market-led process, favours drugs that prolong disease over drugs that cure disease. Curing diseases does not pay-because you lose your patient; whereas converting an acute disease into a chronic disease pays very handsomely indeed - because you convert a short-term patient into a long-term consumer of your drugs. Development of a successful drug is thought to cost about $500 million. So the business plan for a miracle drug is unlikely to leave the drawing board if the patient only needs to take one pill to be cured. All the main blockbuster (i.e. economically successful) drugs, such Zantac, Viagra and anti-retroviral drugs for AIDS are blockbusters partly because the patient is not cured.
Patients, medics and funding agencies have, understandably, been more concerned to prevent early death than to prevent degenerative disease. Yet the long drawn-out death of ill and often demented people is much, much harder and more costly for the individual concerned, their family and society. So another strand of the over-due public debate about degenerative ageing has to be about care and its consequences for individuals, families and societies. Depression, anxiety and social isolation all increase with age, and this places increasing burdens on carers and relatives. Frail elderly people often want to continue to live at home in the communities where they have a social life and networks. Yet there is relatively little effective care in the community for those with degenerative ageing. And finding a care home is often difficult, hampered by the lack of places, information, and support for relatives and friends acting on behalf of the elderly person. Public discussion about the type, location and provision for this type of infrastructure is urgently required. Caring for the elderly ill has too often been an individual problem, dealt with on a case-by-case basis between family and the medical service; it needs to become a publicly acknowledged and more socialised process. Hospices provide an excellent model for palliative care of the old and dying, but because of economic constraints their services are currently restricted to those with incurable cancer who are acutely dying (i.e. they cover the last week or two of life). Hospice services need to be more widely available in the community (i.e. for those at home with a range of diseases).
The consequences for society of these social attitudes to death, and the existing medico-pharmaceutical system, are far-reaching; they impact on the ways that people must plan for their old age; how societies deal with care for the modern elderly; and the ways in which the new old are to be dealt with by politicians and government policy. This brings us to the third consequence of degenerative ageing, namely the political dimensions. How is it that the plight of the very old has been ignored for so long? In part this has to be because they are more or less invisible as voters, as a pressure group, and as a political constituency. The very old suffer from a triple burden of invisibility - the general invisibility of the old, the invisibility of the ill, and the invisibility of the non-working. In a society obsessed with the young, with the fit, and with work and play, the very old are simply invisible to public opinion, the media and political debate. The few valiant advocates for the very old who are actively involved in taking these issues to the public face an uphill struggle to make themselves heard. But - given that a substantial proportion of the UK population will get dementia before they die - the issue is not a 'minority' one. It will affect every one of us directly and indirectly. It is as significant an issue as personal pensions, and hence should engage the political will of governments, employers and ordinary individuals.
The new old
Our concept of old age is also increasingly outdated. A century ago the average lifespan in the UK was fifty years, and anyone reaching sixty years, and thus becoming 'old', had relatively few years to live. Now the average lifespan is about eighty years, so people are old for longer, old age is more heterogeneous, and the average old person is more aged. In many ways, the average person between sixty to eighty years old is much better off now than previously, because of economics, medicine and technology. But for a variety of reasons the 'new old' - those over eighty years - are in a poor way.
People aged eighty years and over now constitute nearly 5 per cent of the UK population, and are the fastest growing fraction of the population. Yet they have by far the worst health, and are probably the most poorly served by the state and society. It is tempting to think that their dire circumstances are a natural consequence of ageing, but we should recognise that in part their present problems were created by a society that extended life without making parallel efforts to reduce ageing and the diseases of ageing. It is perhaps tempting to think that the very old should be left alone, because they are going to die soon anyway, or because they are no longer contributing to society, or because there is nothing we can do about it. But we would not accept such lame excuses in relation to any other fraction of the population. We owe the very old at least as much respect and attention as the very young, if only because that is where we, and almost everyone we know, are headed.
A century ago there were around one hundred centegenarians in the UK. But now there are almost 10,000 people alive in the UK today over the age of one hundred. And the government's Actuaries Department predicts there will be astonishing 250,000 centegenarians in the UK by 2050. This sounds like a good thing. However, according to a recent MRC survey, the quality of life of these oldest old is appalling - for example 80 per cent have moderate to severe cognitive deficits. With the prospect of further ageing and degeneration among the elderly population, there is an urgent need to rethink and, arguably, reorient social, medical and political priorities.
Ten recommendations for a better end to life
Managing the compression of morbidity
The morbidity gap is the gap between average lifespan and healthy lifespan, and corresponds to the average number of years we live with chronic disease or disability. Hence the morbidity gap should be a central statistic in our society, as strategically important as GDP or inflation. Governments should commit to managing the compression of morbidity, i.e. reducing the number of years we live with disease or disability. Currently it is no-one's job to address this problem. Hospitals, health authorities, governments and the World Health Organisation do not seek to compress the morbidity gap. There is indeed considerable uncertainty and argument as to whether morbidity is increasing (expanding) or decreasing (compressing) as average lifespan increases, and the answer may well vary from country to country, and according to how we define disease and disability. Current evidence in the UK indicates that the morbidity gap is growing, but medics and governments seem happy to regard this as an inevitable consequence of an ageing population, rather than as a consequence of their past prioritisation of preventing mortality rather than morbidity. Whether morbidity is increasing or not, we must now actively seek to reduce it in the future: we must actively manage the compression of morbidity.
Funding medical research in proportion to the contribution of a disease to morbidity rather than mortality
Governments must now act to compress morbidity by increasing by several orders of magnitude the funding of research into ageing, and diseases and disabilities of ageing. That may sound economically impractical. In fact it is likely to be fiscally neutral in the short-to-medium term, and fiscally beneficial in the long term. Governments could stop their own funding of research on cancer and heart disease; this would not stop such research because it is currently mainly funded by charities. That money could then be redirected to research on ageing, and those diseases of ageing with most impact on morbidity (for example, dementia, stroke, osteoporosis). By decreasing research on the main causes of death in the aged, the increase in life expectancy could be slowed, hence reducing the expected increase in the morbidity of the aged. And by redirecting research funding onto morbidity of the aged, we could additionally reduce the massive health costs associated with that morbidity (most health care costs are spent on the last years of life). Reducing morbidity at the expense of mortality has obvious economic benefits in terms of both health and pension costs. And those economic gains could be reinvested in ageing research, until we have compressed morbidity at the end of life sufficiently to rebalance morbidity and mortality. When, in the future, the morbidity gap has been sufficiently compressed, we can begin again to reinvest in preventing mortality and extending life, because then that extended life might be worth living.
Taking ageing seriously
Research and research funding needs to be redirected to ageing and quality of life, rather than aimed simply at preventing death. We have spent two hundred years battling death, without seriously trying to change the rate of ageing. Government and private sector spending on ageing research is miniscule compared to spending on medicine. In part this may be because we believed that ageing was natural and immutable. However, as argued above, ageing is in fact unnatural, and research on other animals has shown that the rate of ageing can be slowed. It used to be thought that ageing resulted from a fixed biological programme. But most scientists now accept that ageing results from an accumulation of biochemical errors, which in principle are amenable to correction or prevention. All that is required is the political will, and a few decades of research. But we need to urgently change our priorities by putting billions of pounds, rather than millions, into ageing. The Medical Research Council (MRC), which has presided over the expansion of chronic disease in the UK, should be broken up, and a new Research Council for Ageing created, along the lines of the National Institute for Ageing, which was a success in the USA. Ageing research has had a bad press because it has been associated with the frivolous pursuit of immortality. But ageing research and gerontology are not about immortality, but rather about making life bearable at the end of life.
Creating a realistic public route to drug discovery, clinical trials and patenting
We have to develop alternative routes to drug development for therapies that don't make economic sense for the pharmaceutical and biotech industries. The NHS is the main market for drugs in the UK, and the NHS drugs bill is huge. However, the NHS, medics and the government do not determine which drugs and treatments are developed. Instead, this is determined by the market, because drug development is privatised in this country and elsewhere. The market and drugs industry, as it is currently structured, is efficient at producing certain types of treatment but not others. The NHS, universities, government research institutes and charities in the UK have an immense expertise and potential for drug development: there are alternative routes to drug development within this public sector, but they are small and under-funded. They need to be massively expanded, so that the drugs that are actually needed are developed, rather than the drugs that the pharmaceutical industry wants us to have. However, we also need to produce economic and other incentives for the private sector to seek to cure diseases and slow ageing. One of the current obstacles to drug and other medical treatment development is the patent system and intellectual property laws: this system does not allow treatments to be developed co-operatively within the public sector, or between the public and private sector. And it discourages treatments that take a long time to develop and verify, which is particularly relevant for ageing and the diseases of ageing. We need to shake up the patenting system, so that it delivers what we want, not what it can.
Replacing clinical targets for mortality rates with targets for reducing ageing/morbidity rates
The current UK government has an obsession with health targets, but many of those targets relate to reducing causes of death, such as heart disease and cancer. The recent policy green paper from the UK Conservative party repeats the same mistake in spades, making the top health targets of the probable next government the reduction of mortality rates from cancer, heart disease and respiratory illness. However, hitting these targets is likely to decrease the health of the nation rather than increase it, unless ageing and the maladies of ageing are targeted at the same time.
Giving people the death they want
Assisted suicide, voluntary euthanasia and other forms of assisted dying should be legalised, within a tight regulatory framework. These are not general solutions to the general problem, but they are specific solutions for specific individuals in specific situations. And those difficult situations are becoming much more common as a result of society's previous choices. It is untenable for society to create the conditions for a degenerative very-old age, and then claim there is no exit strategy for the individuals concerned other than to continue degenerating. Obviously there is a quick-and-painless alternative exit strategy, and it is inhumane not to offer that alternative to those who desperately want and need it. In those countries, such as the Netherlands, that do offer this alternative, it is only used in 1-2 per cent of deaths, and it does not lead to the end of civilisation. We need also to empower advance directives (i.e. living wills), so that people get the deaths they want. Most people want to die at home, but they end up in 'homes' or hospital. We need a 'home death' or 'real death' movement, equivalent to the 'home birth' movement, to empower people at a time when they feel most powerless. Death needs to be de-medicalised as far as humanely possible, at least for those who want it that way.
Granting higher political priority and visibility to issues concerned with the quality of the end of life
This might involve giving higher status and priority to palliative care and end of life issues within medicine and care services. It is likely that more and better-funded hospices will be required, yet the public debate around how to provide these, and how they are serve their users, and be funded and managed, has still not been held. Hospices ought to be as ubiquitous and well-funded as maternity hospitals. In order to keep standards of care high and in the public eye, a system to monitor care homes could engage broad sectors of society, especially since people will realise that they might become future users. We need to think about whether the state has a higher order of responsibility for the care of those over the age of eighty years (the new old) than for those over sixty/sixty-five years, especially at a time when dementia and family fragmentation are becoming increasingly prevalent.
Creating enabling technologies for the very old
We need to think creatively about how to enable a higher quality of life for the old and very old. For instance, appropriately designed gadgets and information technologies built into the world around the old could extend their social networking, create artificial communities and permit a greater political presence. Companion technologies could also aid memory, and face recognition, and ameliorate cognitive deficits. Intelligent domestic robots could allow old people to live independently in their homes for longer. Intelligent wheelchairs integrated with power-assisted movement of limbs could facilitate the physical mobility of the aged, if they were integrated into the design of houses and communities. The design of cities, buildings (especially community-based facilities) and streetscapes should take into account the ways in which the elderly and extremely old can move around and participate in society. Designers, manufacturers and architects can also consult widely and more systematically with the elderly and their carers, in order to ensure the most appropriate technologies, materials and designs.
Making the old less invisible and enabling more realistic expectations of death and end-of-life
Many people have unrealistic expectations about death and end-of-life. So they want to stay alive at any cost to their quality of life. And in consequence, half of a lifetime's health expenditure can be spent on the last year of life, in an increasingly fruitless medicalisation of death. To change our relationship with age and death, children should be educated about end-of-life issues, through the school curriculum, student programmes and community activities. Care homes and hospices need to be brought closer to the communities they serve, through education programmes, visits, and other means. The old need to be reintegrated into society and communities in ways that are beneficial to all. In particular we should be enabling the younger old to help the older old, and more generally participate in the voluntary sector and other social roles.
Changing our concept of death
Our concept of death, inherited from history and film, is either of violent death or of a fevered soul wracked by delirium fading into the night and expiring with a final, faint breath. This might have been the average death two hundred or four thousand years ago, but the reality now is very different. Death is no longer an event, it is a long drawn-out process. Because our concept of death is out-of-date, we still believe it is crucial to prevent death at any cost, whereas in many cases, death comes as a welcome release from the years of suffering at the end of life. That doesn't mean that assisted dying is the only solution to the problem-far from it-the solution is obviously to improve the quality of life at the end of life, by reducing the ageing, disease, disability and social isolation of modern old age.
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|Author:||Brown, Guy C.; Radcliffe, Sarah A.|
|Date:||Jun 22, 2009|
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