Autonomy – from the Greek autonomia, the freedom to live by one’s own laws.
More commonly defined today as ‘freedom from external control or influence; independence’ (Oxford dictionary), or philosophically as ‘the doctrine that the individual human will is or ought to be governed only by its own principles and laws’ (Collins English dictionary).
The Stanford encyclopedia of philosophy discusses autonomy at length, but introduces the topic with this statement:
Individual autonomy is an idea that is generally understood to refer to the capacity to be one’s own person, to live one’s life according to reasons and motives that are taken as one’s own and not the product of manipulative or distorting external forces.
The idea that you can be your own person, that you can live (or die) according to your own will rather than having to bend to external forces, seems to be fundamental to what it is to be human. Obviously in a democracy we live according to the rule of law – but we have the capacity to change the law through the democratic process – and I also think (although I am not a philosopher) that we have a moral duty to live in a way that is mindful of the freedom of others.
I have been thinking about autonomy a lot recently, provoked by discussions in completely different fora, all of which seemed to have threads that led back to notions of autonomy. I find the idea of losing autonomy terrifying; drawing on my own experience I would define the boundary between sanity and madness as that point at which I can no longer control my own mind; I can no longer know with certainty what is real and what is not. At that point I lose autonomy, and yield control (willingly or otherwise) to my psychiatrist. Happily sane reflection reassures me that these states are temporary, and relatively infrequent, although at the time of course they seem permanent. There is another profound argument to be had about the loss of autonomy that can be forced upon you through the Mental Health Act, but I don’t intend to discuss that today.
What happens to autonomy when you are elderly? The elderly have been in the news a lot lately – abuse of vulnerable elderly people at care homes, elderly people being discriminated against for cancer treatments in hospitals, elderly people being courted by politicians because they vote, elderly people going to the beaches of Normandy to remember the D-Day landings.
What is ‘elderly’? In the NHS we have care of the elderly physicians (what used to be called geriatricians), and care of the elderly psychiatrists. Both take over care of patients who have passed their 65th birthday, a legacy from the inception of the NHS in 1948, when life expectancy after retirement was about 18 months, and people of 60 were definitely old – old in appearance, behaviour and physiology. Googling ‘definition of elderly uk’ brings up a large number of documents from various bodies, most of which fail to define old age, merely saying that it is not related to chronological age. Some 65y olds can have multiple pathologies leaving them with a physiological age of around 90, whilst some 90y olds are fit and active, contributing intellectually and physically to society, even running marathons!
The crucial factor about ageing may be to do with what happens to autonomy. The intellectually and/or physically active nonagenarian has autonomy. My grandmother, who died in her mid-nineties, undoubtedly had complete autonomy until the night that she went to sleep and failed to wake up. People like Mary Warnock, the writers PD James and Diana Athill, and Prince Philip are all ‘very elderly’ and certainly appear to have full autonomy. There is an entertaining website, deadoralive with lists of those who are still alive, or have recently died (rather American biased). Much of the Dignity in Dying campaign to change the law in favour of allowing assisted dying concerns loss of autonomy. It is clear that people with terminal illnesses fear dying in pain, but in fact they fear loss of autonomy even more.
The proposed law about assisted dying is (necessarily) very tightly circumscribed, and would allow assisted death only when the person requesting it has full mental capacity, has a terminal illness, and has a prognosis of less than six months. This is undoubtedly a sound basis for change of the law. Personally (and at the risk of encouraging those who oppose the Bill, and see it as the thin end of the wedge) I believe that there are people who lack autonomy, whose lives are intolerable and who would like to end them, but who do not have prognoses of less than six months. This is straying into the territory of the euthanasia laws of the Benelux countries, which have been confused with the current UK Bill by its opponents (possibly deliberately?)
Autonomy may be lost in elderly people because of conditions that impair or destroy cognition, such as dementia, leaving the sufferer partially or completely dependent on others for even the basic essentials of life – food, clothing and shelter. More worryingly, I believe that the autonomy of many elderly people may be lost by default. Chronic illness in itself makes people dependent on healthcare providers, and all too often elderly people get ‘talked over’ as though they no longer existed as sentient individuals. This is acutely exacerbated if the person in question happens to be confined to a wheelchair (the wheelchair occupier not existing is not restricted to old people – I suspect that Stephen Hawking is probably the only severely disabled person who does not get talked over). Chronic physical illness such as post stroke conditions can frequently lead to unrecognised (and consequently untreated or undertreated) depression in older people, a problem that is often exacerbated by the reluctance of the older generation to admit to or accept depression as a medical diagnosis.
These issues have been in the front of my mind because of the conflation of some work that I’ve been doing at the Royal College of Psychiatrists, attending the Dignity in Dying AGM, having the experience of a family member in their eighties struggling to come to terms with a wheelchair bound existence, and watching increasing numbers of my near contemporaries take early retirement from medicine as they approach 60. The media have recently been publishing several articles about what will happen in England as the baby boomer generation (of which I am one) approaches retirement. Will we redefine ‘old age’ as we have redefined everything else during our lives? Will we just refuse to accept old age as a concept? I for one feel very much in sympathy with that idea – old age is a mental and social construct as far as I am concerned, and has little to do with chronological age.
I read yesterday that the baby boomers can be defined as having arrived too late to be affected by the war, and early enough to make full use of the digital revolution. I think that in general we are also the first generation to seriously question established religion – many of us who entered our teens on the cusp of the 60s and 70s were brought up with conventional religion at home and school but during adulthood have increasingly questioned its relevance or appropriateness in 21st century England. That is far from suggesting that we are a non-spiritual generation, but I think that autonomy plays a big role here. Why should I cede autonomy over my gender and sexuality to a (seriously flawed) male dominated establishment?
With the assistance of a healthy diet, regular exercise, high tech cosmetics, botox and non-surgical cosmetic procedures, there is no reason why today’s 55-70y olds cannot stay in far better physical condition than their parents and grandparents did. The digital revolution has made it simple for our generation to remain intellectually competitive with younger people, and the digital age has definitely blurred the boundaries between generations. (This has also occurred as a result of increasing numbers of women leaving it until their late 30s and early 40s to have children).
What then will define old age for me? When will I become classified as ‘elderly’? I think it will be when I lose my autonomy. When I can no longer control what happens to me. We are fortunate to live in a democratic society, however flawed, where personal autonomy over one’s mind and body is only removed against one’s will in defined circumstances, albeit that they are sometimes highly controversial. As Stephen Hawking able demonstrates, severe physical disability does not rob one of personal autonomy. I suspect that this is why he is personally opposed to assisted dying, but has recently said that he supports the right of others to have the option available.
Personally I find it difficult to believe that I will want to live if the day comes when I have to lose all personal autonomy without hope of regaining it.
13 June 2014