This is a big theme which remains a hot potato for politicians, the religions and the BMA, , yet it is one our demographics make increasingly urgent. (there are too many of us living too long)
In dealing with it I refer to my own experience and how this has made me feel as well as try to pull together the wider evidence and arguments I have come across before trying to draw some moral, social and political conclusions. I see these as being there to stimulate reflection and discussion, so please dear reader, tell me what you think.as we find ourselves facing what some have called the “dementia tsunami.”
In fact since writing this I find the topic is being widely explored from a variety of angles. I write from a non-theist humanist perspectiv. It also shows how my Buddhist practice and reflections on that teaching has influenced my thinking, though some Buddhists may strongly disagree with that.
Chapter 1 Where we Are
When I’m Sixty-Nine. The Joys of Being an OAP. Personal Gut Reactions. An Unsustainable Present. Dementia in the UK. A Closer Look. Dementia, the Reality
Chapter 2 Soul – No-soul – Afterlife?
The Soul. Who and What gives me Value? Rumours of an Afterlife Consciousness and Sleep, Death and the Soul. The Self, Sympathy and the Roots of Morality.
Chapter 3. Getting Personal (Events and experiences that have influenced me.)
Expectations on Getting Older
Ch 4 Medically Assisted Death
Terry Pratchett. Easeful Death Oregon The Netherlands Point Two Per Cent is Not Enough Dementia and the Dependent Elderly. The Problem Remains Business as Usual. More of the Same?
Ch 5.Time for a Fundamental Culture Change in Attitudes to Death
Oh Yes We Are All Going To God’s Will? Hospices and Palliative Care Preventing the Dementia Tsunami A Happy Life and a Good, Peaceful Death.
CHAPTER 1. WHERE WE ARE
When I’m Sixty-Nine. The Joys of Being an OAP
Today we had our friends Tom and Melissa for lunch. He is now out of hospital but is part paralysed and walks with a Zimmer. Melissa, a lively and attractive woman whose looks belie her age, has been diagnosed with stomach cancer. She has had a dose of chemo and has decided to take no more and is now very thin. She is also convinced she will be re-incarnated. Tom is older and more sceptical. Decline and death beckons, as it does all of us. This raises the question, is having to face our own deaths really so bad? Melissa seems ready to accept it is coming, but of course she knows life without her would be tough on Tom. She knows she could cope better than he could on her own. Today we also heard how retired farmer James spent the morning mowing his lawn, went to his study just before lunch and was found there dead minutes later by Fiona, his wife. Then there is our friend Annie who died on her way out for lunch. Climbing into the car she said to her husband Mike, “My neck hurts” collapsed, and was gone – from such a vital alert life to wipe-out was very quick. The way to go for both of them? Perhaps. But not for their nearest and dearest? Still both had experienced full lives and were in their seventies.
Were they the lucky ones? Many would say no. They would see each of the deaths I have described as a tragedy. If only they had got to hospital quicker, if only they had been diagnosed earlier they could still be with us enjoying their lives and being enjoyed by their families. What is more modern medicine in extending our lives is providing us with a priceless advantage over earlier generations. It is hard to take issue with all of that. At the same time however at our age one knows from one’s circle of relatives, friends and acquaintances and from reading wider press reports that many in their sixties , seventies and older as a result of life saving medical interventions are then going on to suffer from an increasing number of debilitating, disabling, painful and chronic conditions, the worst possibly being the increasing number who descend into dementia. So extended lives are great for some, but the consequences for others can be pretty miserable.
Pretty miserable perhaps, but will not many if not most of us still think even if we have to face considerable discomfort, that life is still worth living and “it is better than the alternative.” Certainly I have friends living with very considerable physical handicaps who amaze me with their cheerfulness and evident enjoyment of life. Generalising about happiness and misery in the lives of others is a dangerous thing to do. And yet. Blanket optimism about the value of continuing to live may be far from justified. Add to this that many appear quite terrified of death and cling on with a desperate persistence to life, despite the awful experience it gives them.
Do not however get me wrong. I wish to live on as long as I can, by which I mean as long as I can feel well, enjoy life and as long as I feel I can in some small way “make a difference” and be of use. Is that unrealistic and asking too much?
Personal Gut Reactions
Moving on then not only do I wish to live for as long as I can, but I have to confess to a series of deeply felt gut reactions. I certainly have no desire and can see no point in continuing to live on as a diminished being. I do not wish to be cared for, condescended to and waited on for more than a very limited time while my nearest and dearest get used to the idea that I will soon be moving on. What is more I feel it would be wrong and unfair to accept or expect such support from members of my family or the community for more than a limited time. Obviously it is not easy to say – until it happens, how long “ a limited time” might be. While I would happily undergo medical treatment for a curable condition or to stabilise some discomfort, I have been inclined to think about six months of stressful, incurable discomfort or irritating boredom would be quite enough. To expect more would be to put on others a burden which would be“ unsustainable.”
Certainly I am also very happy with my life as it is – right now. I can hardly believe how good it is and what a great time I am having. I know of course this cannot continue indefinitely. I am very aware as we get older it can slip through our fingers very rapidly – something I have already experienced.
Obviously for me as for everyone a range of unpleasant possible situations lie ahead – but now is a fine and satisfying moment. The sun shines. I have a wonderful wife, grown-up children I am very proud of, am fit and energetic, and my writing, art and imaging I feel is worth sharing with others and contacts with family, friends and those I work with is very satisfying. I live in the present. Now is the knowing and the present is good.
What I am averse to is relentless pain, indignity, loss of autonomy, a messed up mind, extended dependence and the thought that I might come up against officiousness or temerity in those who might seek to keep me alive beyond the point when I wanted to let go. Certainly if I was in the state of my friends Melissa or Tom I think I might be contemplating a possible exit strategy. This means I would like right now to be able to procure without hassle the necessary medication to be able to die painlessly at a time of my choosing should my happy circumstances suddenly change irrevocably for the worse.
An Unsustainable Present
Yes. On the broader front the politicians and economists are grimly aware that what is happening around us is just “not sustainable”. I worked as a teacher and earned a pension I may easily draw for as long as I worked or more – plus I may need and have already had some rather expensive medical treatments on the NHS. In that I am fairly typical. Basically I feel I have earned my pension and am entitled to medical care, but not total and indefinite support from my wife and family or from the state/community if I descended into dementia. My father has drawn his pension for 45 years – and he is remarkable. At 98 he is mentally alert, generally fit and continues to enjoy his life. I also read that since I retired UK male life expectancy has gone up from about 72 to 78 and is expected to continue to rise.
So are we to assume that we all have a right to live and to receive care, medicine and pension for as long as the body-brain still functions – however poorly? Are we also to assume that every death is a “tragedy” and death is something to be “overcome” and fought against? Or is it not death, but the fear of death that needs to be overcome?
While we fear death and fight to put it off so the load of dependant, handicapped, miserable and demented elderly grows inexorably – placing an increasingly heavy burden, both financial and personal on the young and productive. Recently I visited an elderly friend in hospital. She had fallen and broken her femur. She was doing well and full of praise for the care and dedication she had received, but she spontaneously remarked on looking at the elderly, disabled and demented around her that the system we have now is simply “unsustainable.”
So just what will “unsustainable” mean? We can have a pretty good idea and as the current round of cuts bite no doubt many examples will be reported. It means the erosion and collapse of systems of care. It will mean the elderly disabled increasingly left ill and abandoned, alone, uncared for, or bullied, victimised and lying unwashed and stinking in their own excrement or dying – as recently reported – of starvation. Carers and partners will be driven to distraction by years of relentlessly giving support as they themselves grow old in a world where there is no possibility of respite care or good residential care – except for a tiny minority, yet enough care to see life going on and on.
We have been there before with far smaller numbers, but this will be something else – a bizarre and macabre horror show with an ever growing proportion of the population (about a quarter to a third?) consisting of the frail, disabled, extreme elderly and demented. Poverty stricken and unable to sustain themselves they will be dependent upon increasingly fitful and inadequate public and private services as they experience diminished lives of increasing misery and desperation.
As this burgeons the pressure on the “younger” generations (often OAP carers) will grow ever more intense. What is more the longer this goes on the more the working or economically active will see it as unfair, an unsustainable burden, a robbery of their own youth and resources. Perhaps at some point there will be a steady increase in attacks on the old and their property and then perhaps riots against “pensioner privilege” and outbreaks of “pensioner pogroms”. Impossible? Certainly already we know the proportion of those in care homes who receive no visits from relatives and children is growing.
Dementia in the UK
The Alzheimer’s Research Trust’s report Dementia 2010 reveals that: 820,000 people in the UK live with dementia. 1 in 3 over 65s will die with some form of it and the numbers are set to double every twenty years. ( i.e. 1,640,000 by 2030) Dementia costs the UK economy £23 billion per year. That is twice the cost of cancer (£12 billion per year), three times the cost of heart disease (£8 billion per year) and four times the cost of stroke (£5 billion). Combined government and charitable investment in dementia research is 12 times lower than spending on cancer research. £590 million is spent on cancer research each year, while just £50 million is invested in dementia research. Heart disease receives £169 million per year and stroke research £23 million. For every £1 million in care costs for the disease, £129,269 is spent on cancer research, £73,153 on heart disease research, £8,745 on stroke research and just £4,882 on dementia research. Caring for each dementia patient costs the economy £27,647 per year: more than the UK median salary (£24,700). By contrast, patients with cancer cost £5,999, stroke £4,770 and heart disease £3,455 per year.
A Closer Look. Dementia, the Reality
My wife had an aunt who was a highly intelligent and attractive woman. She had an impressive career but remained single. I remember her wonderful turn of phrase and wicked sense of humour. She retired and on reaching her late sixties, inherited some money and was looking forward to enjoying it. She then started to show serious signs of dementia, becoming disorientated and forgetting where she was or what she had done. She fell in the road outside her home breaking her hip. She was hospitalised and her deterioration into complete dementia was rapid. On coming out of hospital she had to be placed in a care home. There she existed bedridden for seven long years until she died. Her brother and other relatives who loved her visited her often for what were harrowing experiences. It was a terrible end and one which was made worse for it seemed she could glimpse in her rare moments of rationality what she had become.
Her case is far from rare. Currently I have a friend who visits a care home on the edge of our town to support an elderly lady who is licensed to give the residents communion. There she comes across the addled and sometimes raving remains of what were once normal mothers, husbands and wives. Some were people of considerable distinction, others quite ordinary, but all are now living out their final days in a downward spiral of indignity and mental deterioration – and this despite receiving well-meaning and sympathetic care.
Dementia then is a pretty awful condition – one we would rather not think about, but it raises the core issue. What makes human life something really valuable. What makes my life valuable?
Chapter 2 Soul – No-soul – Afterlife?
The addled remains of the patients in the dementia care home raise in me the question. What of the “souls” of these poor people? Does the soul in some detached way look on while the rotting brain deteriorates further – briefly sparking frightening illusory dreams and twisted memories which cause what is left of them at times to shriek and strike out at those around them or to clear long enough to make them aware of their terrible predicament?
In her book Easeful Death moral philosopher Mary Warnock and cancer specialist Elizabeth Macdonald carefully examine the idea that we have a “soul” or that there is a “ghost in the machine”. They reject the ancient body soul dualism which is still taken for granted by many as a good way of understanding who we are. Warnock also explains clearly how and why for so long this idea remained plausible and notes it continues to be held as crucial by many who are religious as an “act of faith.” She also explains that developments in neuro-science show the time for such thinking is past for we now know that “a person is one organism whose corporeal and mental life cannot be prised apart.” (p132) She concludes, “It is futile to keep alive those who are in the last stages of dementia, who have lost the capacity to recognise the sensory input they receive … the most crucial and valuable part of their body, their brain, has been ruined beyond repair.” (p134) My reaction is to add that the reflective awareness that was crucial for their identity has been shattered. To some extent they will have moved on to be remembered by the minds of those who knew them best and loved them most – but what is left behind is no more than a hollowed out and disfigured shell.
Who and What am I and What Gives Me Value?
Mary Warnock expresses herself with admirable clarity and precision but I wish to go a bit further in thinking about who we are, so here goes.
“I” am of course a self-aware individual. As I see it what gives us value is our incredible and mysterious possession of reflective awareness. I can think about who I am. This is what makes us so special. Without awareness, without reflective consciousness – “I think therefore I am” as Descartes said – there can be no reasoning, sharing or growth in knowledge, no awareness of the universe, no science, religion, art, no sharing of experience or co-operation in living in communities, no creating complex cultures, no use of language or the incredibly subtle and precise means we have to communicate – all those things which mark us out as being very very different from all other beings with whom we share this planet.
The dandelion now strikes me as a better image of the self than a spark of light in the brain – a soul- or a “ghost in the machine”. The fuzzy centre shows the brain which is connected, via the senses, to all the myriad other “selves” with which it interacts throughout life – that is the little seeds connected to it, each with its own collection of links. Even this oversimplifies, still I think it conveys the basic idea.
The dandelion as a symbol of the nature of reflective consciousness.
Human beings are aware of our own brains and bodies and are able to reflect and think about them and our thoughts. This awareness is not innate. It is dependent on our interaction with other brains and bodies mediated through our senses – We connect with a myriad other brains and bodies, but unlike the dandelion these flow back and forth through time and space. Each one of these deposits tiny bits of information into our brains and our brains do the same to every other brain we interact with.
When we die, the centre of the dandelion, our personal brains, is rearranged and decays, but all the connections and deposits it has made, live on in the body-brains of others.
Thinking about what “I” means I think we can go beyond the apparent individualism of Descartes’ statement in recognising that this reflective centre of consciousness that I think of as being me is not only dependant on the continued working of this incredibly complex, unique and still most mysterious body and brain. “Me” is also made up of all the thoughts, interactions and influences of countless other minds. Minds from the past, minds from the present, minds who have influenced me, still influence me and in the process have become a real part of me.
Of course I recognise that when this body-brain dies my self-aware consciousness, the mental world my thinking brain has created with and through the exercise of my senses, will dissolve. It will be wiped out, but that is not the end of “me.” Is this because I believe I translate to another realm or another life more or less intact as “disembodied consciousness”, spirit, soul or atman? Not at all. Rather I see that when the body dies the elements that make up me which have interacted and influenced other minds continue to exist – though splintered, refracted and redistributed as large or small elements in the mental worlds of others, what we may call the interconnected web of human awareness, a “nous sphere” or mind sphere(de Chardin) a sort of Google on a much finer but even bigger scale. Can I put that more clearly?
Broadly I think “I” consists of what is commonly thought of as body and mind. As body my physical being is continuously changing. It consists of almost infinitely old atoms and molecules, sub-atomic particles and electrical charges arranging and re-arranging themselves into subtle patterns. Out of these and interlocked with them (and still only dimly understood) has grown my mind, my awareness or the expression of my consciousness, my personal mental world. This too is continuously changing. Of course we now know its capacity to change is in the first instance dependent upon the body and brain developing properly and continuing to function in a more or less healthy manner. A brain tumour, prenatal alcohol poisoning, Alzheimer’s and several inherited conditions like autism or Downs syndrome can limit or wreck it. Those are “inside” the brain.
This “mind” then is quite obviously influenced by and dependent on “physical” changes in the brain, but as regards the operation of my mind in relation to “the world” outside the brain it is also in a constant state of transmission, transition and interaction – both with the physical world and with other minds in that world as mediated through the senses. (Sight ,sound, touch, taste, smell) What is more we now know that when we learn about the world through study or training, this enhances the brain physically and if we are subjected to sustained or extremely stressful experiences from “outside” the brain or gross under stimulation (Romanian orphanages) of the brain, then the mind that emerges from it can be permanently damaged.
“I” then reverberate back and forth between the physical world “outside” the brain, other minds and their mental worlds and my own brain as we talk, read and discuss. In fact I see I reverberate in the minds of all those who interact and relate to me, from the closest relationships I have to the most fleeting and casual. Everyone I meet and every experience I have changes me – and is affected and changed by me. This happens continuously – even though in the process that “I” is splintered into bits and goes off down different paths – as I think the Twitter generation is quick to appreciate.
So “I” am in “you” dear reader, as my thoughts become partly your thoughts. “I” am similarly in all those who have interacted with me and I am in what I have said, done, written, made, photographed and painted. So “I” resonate – like a stone dropped in a pond or a gong struck – sending out waves in an ever more attenuated, modified and less individuated form, unless part of me be the bearer of some very special insight, pattern, formula, project, “personality” or story which imprints deeply on others. By this I mean something that triggers a deep reaction or rings a very loud bell in their mental worlds. Examples? Darwin, Muhammad, Jesus, Hitler, Mozart, Vermeer, Shakespeare, J.D. Rowling or Terry Pratchett (just think book sales) or a breakthrough mathematician like Einstein.
Still, in my many roles such as teacher, husband, father, photographer and writer, in my very small way I also resonate on – directly and subtly influencing – in positive and negative ways – down each and every path – everyone I have known. Yes, it is rather scary and yes this applies to all of us and we are all special. In fact despite all we share with each other, we are all unique, both physically and in the mental worlds we construct.
This I see leads to the conclusion that it is a massive mistake, a huge misperception, in fact a damaging illusion – as I believe the Buddha said – to think of ourselves as being isolated individuals. We do not and cannot exist entirely on our own. We do not and cannot be aware except in relation to other minds. We never are a tabula rasa, a blank slate. For all our real individuality we are always members of a family, a culture and a society so there can never be a year Zero, a time or place when we start again from scratch. We always – in the broadest sense – start from the shoulders of those who have gone before us and we are all linked in to each other. Shakespeare was a genius sure, he was also a product of a specific culture and set of relationships and his work is both the expression of individual genius and of collaboration and interaction with those around him..
And so it is with each of us. In each of us the universe becomes – as de Chardin said – self-conscious. And in each of us that cosmos is seen by the resulting “I” slightly differently. That then is the context and I would say the reality of our living and our dying.
Rumours of an Afterlife
“So what?” you may say. “What has this way of thinking got to do with your attitude to death? I think it makes a profound difference. It means that as we all inevitably and continuously rub off and influence each other, we all share in what we can call a sort of immortality. Human beings for as long as they have been self-conscious (as the earliest burials show) appear to have been inclined to believe that when they died, in some sense they lived on – and they have devised different ways, theories and stories to express this, be it in The Dreaming or with The Ancestors, or by Re-incarnation, or in a Heaven, Paradise, Hell or Purgatory.
Consciousness and Sleep, Death and the Soul.
Body and Soul. The idea we have a mortal body animated by an immortal, immaterial soul is deeply ingrained across cultures. The Catholic version – shared by most Christians – sees it implanted by God at the moment of conception to leave the body for judgement on death. The picture on the left shows the soul suffusing and animating the body, the image on the right shows it continuing in an immaterial state.
“To die, to sleep – perchance to dream. Ah there’s the rub.” Hamlet goes on to fear what the “dream” after death might be. What he takes for granted is that he has an immortal soul and life after death. What worries him is not that he will cease to exist, but that life “on the other side” might be far from pleasant! Here he expresses an ancient belief and one which continues to be a way of making sense of life and death for many. I am inclined to agree with those who consider that the roots of this way of thinking which go back beyond philosophy and are it seems trans-cultural have a very simple origin. It goes back to our universal experience of losing consciousness, falling asleep and dreaming. What happens to us then? Answer, there is something about us, some essence, an essence which is not tied to this body and which can move out and inhabit the weird and half-remembered – or vividly remembered – world of our dreams and nightmares. If in addition we meet those who have died in our dreams it follows when we die this essence will move on. On this basis it seems later thinkers and religious teachers have developed the idea of the incorporeal, immortal soul.
For us however, as the products of a secular, science and technology driven culture such beliefs seem increasingly fanciful and hard to take. They no longer convince as an accurate description of the way things are as quite obviously they formerly did for so many from Inuit shaman to pope. Still they remain important for many religious “believers” who accept them “on faith,” or as “a matter of faith.” This means of course that they recognise that ideas about the soul are not certainties, but something you can reasonably doubt.
The secular alternative to the “faith” positions that speak of a soul and immortality is widely seen to be an acceptance that at death we simply face “total wipe-out” and that is the end of the matter. “Ashes to ashes and dust to dust.” with no “sure and certain hope of resurrection” as the Book of Common Prayer puts it. Life then can be seen as Macbeth expresses it “but a walking shadow, a poor player,that struts and frets his hour upon the stage, and then is heard no more. It is a tale told by an idiot, full of sound and fury, signifying nothing.”
On a rather obvious level this is of course, true. When the brain ceases to function, individuated brain dependant consciousness ceases. But what makes up “me” the self, is as I have been attempting to point out, a great deal more than just my individuated consciousness. Again to put it very simply we live on in each other – not in a metaphorical – but in an actual way. As my individual consciousness is made up of myriad contributions from the consciousness and physical being of others, so when I die my contributions live on in the body-brains of others. What is more – long before I die – aspects of me are living on in those I have known – loved, worked with, taught and striven with – to a greater or lesser degree, for good – and oh yes, for ill too.
This then I would suggest is the intuitively recognised truth of all human experience, a truth which has been expressed through the belief in the soul and immortality and all the many and very different stories, symbols and ceremonies which refer to an afterlife (or previous life) which are communicated through the religions. We do not however need to “have faith” in any of them, rather we can explore what they are trying to say and reflect and look hard at who we are and what is actually happening in our lives now and what actually happens when we die. If we do that we simply see that the self – me – has many facets and no clear cut boundaries. This also emphasises that we have responsibilities – for the things we do, say and communicate have real consequences – good, bad or neutral – on the lives of others.
The Self, Sympathy and the Roots of Morality.
I thought this was put rather well recently in a radio discussion when Mary Warnock was asked by Andrew Marr what she saw as the foundation of morality. “You introduce children to the concept of morality by introducing them to feel sympathy for other people,” she said. “We need morality for the human predicament is rather awful. We are subject to disasters at the hands of nature and other people and if we don’t think about other people as just as important as ourselves, we all sink.” The gerontologist, polymath and philosopher Professor Raymond Tallis on the same programme agreed and added. “Our morality is based on our imagination, our compassion, our love, feeling that the other person is like oneself, the other person is like me.” Interesting. Jesus said, “love (have compassion for) your neighbour as for yourself.” The Buddha said the first step towards becoming a more enlightened being is to practice generosity towards others. Out of this grows compassion and out of compassion grows everything else that he taught, including his understanding that the idea that we have an isolated individual soul is an unhelpful illusion. This was something no-one else had recognised.
These remarks from both “secular” and “religious” sources all seem to tie in with what I have tried to express. To say that morality is based on compassion, on an awareness of the shared nature of the human predicament, on opening us up to have the imagination to feel sympathy is tied in with what first the Buddha and then Jesus said, and I paraphrase slightly, “in as much as you do this to another person, you do it to me.”
“But surely,” you may reply, “The other person is NOT me. I am perfectly able to ignore the other person and their suffering. I can simply look after number one.” Certainly you can and as an “individuated consciousness” we all have the power to make individual choices, but is “looking after number one” the way to find deep and fulfilling happiness? In choosing how we direct our consciousness and our behaviour we need to reflect – be mindful – and consider the consequences – what are we doing to others who share something of our self – at the very least as “fellow human beings” and what are we doing to our own “individuated self” in the process? “Looking after number one” may be the best way to twist and destroy ourselves.
Cruel and violent behaviour, selfish and greedy behaviour, angry behaviour, sexually irresponsible behaviour, manipulative and dishonest behaviour, fearful and self-serving behaviour, all these are ways of feeding the illusion that one is essentially a “me” who need only think of gratifying number one. In as much as we are NOT open to our responsibilities and the needs and sufferings of those around us we deny who and what we really are and what gives deep happiness and a real sense of fulfilment. And what is that? Am I wrong in thinking it is to experience and accept that my “self” is something much deeper, wider and more transcendent than my own individuality and that we are actively contributing towards that wider self or community of consciousness and awareness by being open, compassionate and helpful – whether we live or die.
Chapter 3. Getting Personal
On Tuesday 30th May 2006 I had a heart attack . It came out of the blue and I had no previous symptoms. I was picked up by the Yeovil ambulance and “thrombolised” on the way to Yeovil Hospital. In that ambulance before the drug took effect and broke down the clot I knew I was seconds away from death. In hospital I responded well and thought I had escaped. I had not. In November 2006 I was operated on in Bristol Royal Infirmary and given a triple bypass – a daunting operation brilliantly executed. Of course I am not special. This happens to thousands every year, but those two events have been life-changing for me. They made me very aware of how close I had come to death, something that had previously seemed remote for I have a father of 98 and have always kept rather fit. Death could await my attention until later. Now I know it cannot.
I consider that what has happened to me has been an overwhelmingly good experience. Now every day I live is one to savour. Every day also feels like borrowed time, for I am acutely aware that my life is the gift of the surgeon’s knife and all those who worked so well to save me, and all who went before them developing the knowledge, skills and compassion, in fact all those who contributed to developing a whole culture, that made the “miracle” of what I experienced possible. They saved my body-brain and consciousness – and nursed me with skill and compassion that I might continue to savour and experience this life. So I am grateful and in no hurry to go, but if death comes – based on my own experience of having come close – I actually do not fear my self-awareness passing into nothingness. I hope it will not happen yet, not for years, but that it will is simply a banal inevitability, one of the few absolute certainties we have. Added to that an awareness that it can come at any time makes me want to use my time as well as I can.
Over twenty years before this happened I had the good fortune to have come across Buddhist teaching and practice and have been on retreats to learn the practice of mindfulness and awareness meditation (Suddenly so trendy with the new emphasis on Happiness and Mindfulnes) and I have found this really helps The Buddha noted that there are only three things we can be really certain about. We are all going to die, everything changes and all actions have consequences.
In the monasteries I have visited the monks and nuns chant these words regularly:
I am of the nature to age. I have not gone beyond ageing. I am of the nature to sicken. I have not gone beyond sickness. I am of the nature to die. I have not gone beyond dying. All that is mine, beloved and pleasing, will become otherwise, will become separated from me. I am the owner of my actions, Whatever actions I shall do, for good or for ill, Of those I shall be the heir.Thus we should frequently recollect.
Depressing? Miserable? Absolutely not. Realistic? Yes. In fact after my heart attack these words kept coming back to me and as I prepared for my triple bypass I found them profoundly calming and re-assuring. We are all mortal and while we are alive our actions and even our thoughts have consequences for ourselves and for others and we should strive to see that these will be good.
What is more if thinking about death is depressing, surely to seriously imagine our individuated consciousness, our essential self – going on for ever and ever – in any sense – really is depressing and miserable – as well as being literally unimaginable – for it would needs apply to everyone.
Expectations on Getting Older
How does this way of thinking and seeing affect my expectations as I get older? In the first place it means despite mistakes and frustrations I do not think my life has been a pointless waste of time, “signifyinf nothing” but that my actions and even my attitudes have had and continue to have consequences, consequences both significant and subtle, consequences that have influenced and continue to influence others, often in ways I can never know.
In the second place I reject it as being unhelpful to take the stories of a supernatural after-life or the existence of a non-corporeal soul literally. To do that is a misleading way of thinking.
Ch 4 Medically Assisted Death
One key thing then that I think needs to be done is to promote a culture shift in the way we value life and think about death. Sir Terry Pratchett after being diagnosed as having Alzheimer’s made a good start in his public lecture on TV asking that he be given a proper and dignified choice as to how and when he wishes to end his life. The picture he painted was attractive. Sitting on his veranda at sunset with his favourite music in the background, he imagines sipping a draft which helps him drift off peacefully. Not everyone would want or be able to choose that, but surely those who do should have that choice.
Is his fine example enough to deal with the wider problem in that we live in a culture which seems to encourage people to be – frankly – terrified of death? In fact it almost seems that as medical developments delay death for years the idea gets stronger that death is somehow “an avoidable tragedy”, almost an unnatural event. This strikes me as deeply irrational, neurotic and irresponsible. To be quite unable to face the reality of one’s own inevitable mortality strikes me not as optimism but as rather sad. Of course if you are young such a reaction is both natural and understandable. If you have much to look forward to and have done or experienced little, death really is to be feared and resisted, but what about when you have had a full life and know and feel you are nearing the end as regards what you may enjoy, learn, achieve or contribute? Surely when you have reached the stage when you feel you are no longer able to be independent, productive, healthy or able to enjoy the present – death should become no big deal. At that point the fear of death – as opposed to fear of painful dying – should become something to be reflected on, yes, accepted and then let go of.
The focus of Warnock and Macdonald’s book Easeful Death is a carefully researched and written examination of the issues surrounding assisted suicide and euthanasia. They do this with particular reference to the failed attempt by Lord Joffee to get a bill passed in 2006. This proposed that after signing a legal declaration that they wanted to die, a patient’s doctor could prescribe a lethal dose of medication that the patient could take themselves. Only people with less than six months to live, who are suffering unbearably and deemed to be of sound mind and not depressed would have been able to end their lives under this proposal. This also leads us to look at what has been happening in Oregon and the Netherlands where similar proposals have become law and are now “bedded down” in medical and legal practice.
In Oregon those diagnosed with painful terminal illnesses under their Death with Dignity Act (DWDA) are able to apply for the right to have a prescription for a dose of lethal medications. This they must administer to themselves. The State reports, “During 2009, 95 prescriptions for lethal medications were written under the provisions of the DWDA compared to 88 during 2008. Of these, 53 patients took the medications, 30 died of their underlying illness, and 12 were alive at the end of 2009. In addition, six patients with earlier prescriptions died from taking the medications, resulting in a total of 59 DWDA deaths during 2009. This corresponds to an estimated 19.3 DWDA deaths per 10,000 total deaths.” The report continues,” As in previous years, the most frequently mentioned end-of-life concerns were: loss of autonomy (96.6%), loss of dignity (91.5%), and decreasing ability to participate in activities that made life enjoyable (86.4%).
Of 136,000 deaths annually in the Netherlands, about 1.7 percent are by voluntary active euthanasia, 0.1 percent by physician-assisted suicide and 0.4 percent are “extra legal” because they involve patients with no current explicit request to die, but who either made one before becoming incompetent or are perceived to be suffering intolerably. The Netherlands has a 2002 law that allows doctors to prescribe medication for suicide or perform “voluntary active euthanasia,” in which the physician rather than the patient administers life-ending medication. Dutch law does not require terminal illness, but “you have to be facing intolerable suffering,”
Two Percent Is Not Enough
What do these three examples have to tell us? First Oregon and the Netherlands. Basically in both societies local public opinion supports these laws. What is more in neither country does it appear that there has been any measurable erosion of confidence in the doctors who carry out this service or evidence that unscrupulous relatives are pressuring the elderly to end their lives. One thing however certainly seems to stand out for me. That is that we are talking about no more than two percent of annual deaths. This means 98%of deaths take place without such interventions. So while the law is respected, the great majority prefer home or hospice care or die alone. These traditional options can be the right way to go provided they are reasonably quick and there is good nursing and palliative care, good pain control and the support and presence of family and friends. These conditions are often met so many people have what can be described as a “good death” where they slip away peacefully and painlessly.
Certainly in Oregon and possibly in the Netherlands, those who request help in ending their lives are largely well-educated, self-confident people who loathe the thought of losing control of themselves and their lives. Baroness Warnock expects that a similar rather small group would be the ones who would take advantage of the Joffee Law were it to be passed in the UK
Dementia and the Dependent Elderly. The Problem Remains
The problem I see in the UK is that neither the Joffe Bill nor Oregon’s Death with Dignity Act would be any help to those struck down with dementia or have any effect in dealing with the number of escalating cases. Here as we have seen from the summary of the Alzheimer Society report the present case load and predicted increase as our population ages is frankly appalling and terrifying. At present dementia does not respond well to treatment, but claims are being made that a breakthrough is on the horizon. Let us hope so, but will it change things? Yes. If the body is healthy and the brain does not deteriorate many should be able to have several extra years of satisfying active life. Then what?
The problem of how to cope with the sheer numbers of dependent very elderly will remain, they will simply be even older. As I have said I have a 99 year old father who remains physically and mentally active – a keen bridge player, and he clearly enjoys his life. Similarly my mother-in-law was alert, perceptive and happy. She was much loved and appreciated by her family for whom she was a super grandmother and counsellor to the end, even though she had some physical handicaps. She lived well and died nursed and surrounded by her family at 97. She and my father however are the lucky ones and frankly had the resources to fund their own care.
This means even if a great swathe of present or future dementia sufferers are saved from mental devastation, the basic problem remains. While more and more men and women are living substantially longer, a major proportion of them are also far from well living increasingly restricted, painful, and miserably unhappy lives while the costs of supporting them are spiralling relentlessly.
Business as Usual. More of the Same?
Here and in the US the rich and the very rich may be able to continue to afford a huge range of life extending, life-enhancing treatments, including those luxury trips to China for spare parts harvested after executions. Medical research into the active preservation of mind and body will continue – but the treatments may be very expensive, outstripping what “ordinary” people can afford or expect. A new class of active centenarians will emerge, some still powerful in politics or leading figures in businesses ( think Putin, Murdock, Gates, ) This new geriatric elite may live gilded lives barricaded in gated communities with medical care, treatment and support beyond the wildest dreams of the masses beyond.
At the same time the grim words “unsustainable” will become a reality in the UK. This will also happen in the US and the “developed” world as is already the case in the “developing” world where the dementia explosion we are told is just as great.
Ch 5. Time for a Fundamental Culture Change in Attitudes to Death
I would suggest that we are rapidly reaching a point when we need a radical change in the cultural mood. As conscious aware beings everyone should be recognised as having the right to live for as long as our bodies support us, but our aspiration should be to live lives that are satisfying and happy and we should also have a clear and recognised right to a painless and dignified end at a time of our choosing when facing painful incurable conditions. It should become increasingly acceptable, and seen to be sensible, responsible and honourable to evade a miserable, demeaning or mentally or physically painful end to our lives. Why should anyone want to endure such a thing? Why should anyone want to see their nearest and dearest watch them endure such a thing?
To make a difference to the larger problem of the sheer numbers involved the change in attitudes needed should not be restricted or self-restricted to a self-confident self-reliant minority, it will need to become mainstream and widely accepted. Sadly we can expect an impassioned and even violent campaign from some in the churches, synagogues, mosques and other religious bodies who will continue to assert each soul is implanted by God and that when it comes to dying the choice as to when this should happen is not ours to make, but that we “should submit to God’s will.” They will continue to stigmatise such a choice as “suicide” with its negative connotations of cowardice, mental instability, an attempt to “play God” or just an incapacity to cope with life. In addition we may see that they may turn on those who aid and abet the process, be they medical or other, as venal, murderous and devoid of morality. It is the fear of this backlash that has stopped even the Joffe law from reaching the statute book.
These ideologically or religiously based objections are not however the only ones. The biggest fear that opponents of changes in the law emphasise is that the legalisation of medically assisted death may result in the exploitation of the vulnerable who might be pushed into ending their lives by greedy relatives. A second objection is that it would destroy the bond of confidence between doctor and patient if patients thought a doctor could legally “finish them off.” That argument ignores the equal and legitimate fear that the present legal position means patients fear doctors will revive and continue to treat them unnecessarily for fear of being accused of malpractice. The experience of Oregon and Holland appears to be that neither have there been cases of pressuring relatives or a loss of confidence in doctors. Then there is the “slippery slope” argument that once medically assisted death is legalised it will “inevitably” end in the mass gassing of the elderly and the handicapped as happened in the Third Reich. This is an example of extreme alarmism and flies in the face of all medical ethics and legal practice and ignores that we do not live in a Nazi dictatorship but in a liberal democracy with strongly entrenched laws. At the same time we are members of a society facing a “dementia tsunami” in which a failure to act could bring disaster.
Obviously the introduction of new laws to allow medically assisted death should be carefully monitored and regulated to protect people from undue pressure and abuse, and on the face of it sensitive and open practice would increasingly win public support. There are a variety of different ways this could be done.
In the face of the increasingly obvious mass suffering the “unsustainable” situation will however bring about, the responses of those against all change will become less and less credible or acceptable to most people. In fact already public opinion seems to be turning in favour of allowing medically assisted death. Shrill and emotive fear campaigns against assisted dying may even bring many more to accept the need for change.
What I think is needed is a campaign by those who wish to choose this path to see the law changed. In addition there needs to be a lot of discussion and exploration of how an assisted dying choice can be recognised as a fitting affirmation of a life that has been valuable and worthwhile but has now run its course. Such a choice is surely very different from suicide which is an act of despair and desperation, a sad act of rejecting life and often of self-loathing. What we are talking about is not a rejection of life, but an affirmation of the value of one’s life and character and a rejection that this should not be sullied by being remembered as ending in an extended period of incompetence, dependence and burden on those one loves most.
Oh Yes We Are All Going To
It seems ridiculous to have to say this again but I fear it has to be hammered home. However much longer we live as a result of clever medicine we really need to accept that we are all going to die. Once we do that the next question is how and when? At a time of our own choosing or desperately fighting off the grim reaper? Are we to continue to battle on for as long as possible with pills, potions and treatments beyond the point where they do little or nothing to ease pain, distress, boredom or general unhappiness – not to mention the use (or is it misuse) of expensive resources, or should we choose another path.
To be specific. I do not want either the taxpaying community to be burdened by my long term care or my life savings spent on care home fees nor would I like to see my wife or children ground down by looking after me. When I can no longer live a fulfilling autonomous life I want my resources to go to my wife first and then my children.
I wish then to influence a change in social attitudes and the law so that when – as is absolutely inevitable – I am faced with the slipping away and the degeneration of my physical and mental faculties, my decision to depart will be accepted by my family and society and that this decision should then be treated with respect as being rational and responsible. Crucially I would hope my nearest and dearest would accept that the decision when to leave should be mine to take and that to do so should not be regarded as a sign of weakness, selfishness, depression or “rebellion against the Will of God” but an expression of a calmly made decision that my time has come and that leaving is the best thing for me to do – as much for those I love as for myself.
The longer I live the more I find the assertion of those who claim a religious motivation for saying that “our lives are not ours to take” and that we are “in the hands of God” increasingly difficult. Such a view seems to imply that since “he has the whole world in his hands” it is God who sends cancers, AIDS, schizophrenia, depression, strokes and dementia. Why? To torture us and to drag out our last days? Perhaps to punish us? Perhaps to teach us humility? Perhaps to show us there is no escape from sadness and misery in this life however rich and powerful we are so we may repent, turn to God and hope for heaven? No. Perhaps God does it to make us more thankful for the good bits in life. Perhaps God does it to incentivise our brothers and sisters into treating us with love and compassion. To all such reasoning the best response is surely BOLLOCKS.
I am sure that this response is also the response of many believers in God be God seen as Yahweh, the Father, or Allah. Many in all these traditions see God as best apprehended as love, as merciful and compassionate above all else. This being so I would hope given time and careful reflection religious based moral teaching could well change to recognise that medically assisted death could be seen as working with and not against God – just as religiously motivated morality has changed over other important issues. (Slavery, autocracy, gender equality and sexual orietation.)
Some however may continue to reject choosing a medically assisted death for themselves under all circumstances. Such a choice should be their right, but they should not have the right to stop others being able to choose.
Hospices and Palliative Care
Recently my brother died of a brain tumour in a hospice in Cape Town. Slightly younger than me he knew he was dying and both his son and my wife and I flew out to join him and his wife and daughter and to be with him while he still could appreciate seeing us. Before we flew in case he suddenly deteriorated I wrote to him at length saying how much he meant to me and reminding him of his many achievements. I am glad I did for he carried that letter in his pocket from then on. He was able at two social occasions to see close friends and family, discussed his affairs calmly and faced his coming end with great dignity – although with great sadness for he was only in his early sixties. After we left he deteriorated quickly and was admitted to the hospice as planned. There his condition was they said “stabilised” after ten days and they were about to send him home when he died in the early hours, alone.
While the care given at the hospice was by all accounts excellent, would it not have been better if he had been able to choose if he wanted to take a soothing draft at home surrounded by those he loved? I do not know if he would, but the point is he had no such choice. He was given no option but to submit and let his illness take its course.
Since its foundation by Dr Cicely Saunders in the fifties and sixties the hospice movement has grown across the world bringing greatly improved care and understanding as regards the needs of the dying and their families. The focus is on pain management and maximising the quality of life for those with “life-limiting conditions”. Cicely Saunders and the hospice movement have mainly dealt with cancer sufferers and have also been deeply influenced by her Christian faith and belief in the value of the person. Following her lead however current hospice philosophy in this country is completely opposed to any form of voluntary or involuntary euthanasia, arguing that any patient properly cared for does not need it. Added to that hospice staff has to constantly balance giving relief to pain against any suggestion that they might be hastening death by doing so. This is because the law lays them open to investigation and possible prosecution by relatives. Depressingly I have heard it said by hospice nurses that those who threaten them with such action are often those who actually hardly ever or never visit the deceased.
Of course many will choose to accept hospice and palliative care at the end of their lives either in the home or the hospice. Such care can be and usually is dedicated and excellent. What I am inclined to add is there should also be an option for those who choose to take leave of life before they get to that point.
Preventing the Dementia Tsunami ?
The sad fact is however that a minority choosing “Easeful Death” will not make much difference to what some are already calling the possibility of a “dementia tsunami”. Should we go further or are the legal and social changes so far discussed enough? It seems to me changes giving everyone who wants it the right to have in their possession suitable lethal medication and changes to the law giving those who choose to be able to give advance notice of their wish for euthanasia if they develop dementia are necessary first steps. Changing our knee-jerk death fearing attitudes however is just as important. To do this we need to create a climate where many more might see the benefit for themselves and their families of escaping a long, slow and painful decline. How?
A Happy Life and A Good Peaceful Death.
For a start I think we really need to develop a new branch of talking therapy, one that will help people think about their deaths in a positive and open way. Yes, life is great, the best thing we have, and yes the fear of loosing life is natural, but that fear needs to be looked at very carefully – for death is also natural.
The fear of death may well come in very different forms. For some it may still be based on a fear of Divine Judgement as so graphically portrayed by the medieval Church, Revelation and the Koran – of Hell and Damnation? Hell, damnation and judgement are certainly powerful images. They may however be best seen as metaphors which are more useful for helping us look at the quality of our lives here and now which for a range of reasons certainly can be hellish. They may then be images that help us seek a new direction and come to terms with past painful behaviour and fractured relationships. They may not really be about frying on the other side.
Others may fear death because they have had dreadful pointless lives, feel cheated and still hope for something more. Some may fear death because they hate the thought of being separated from those they love and leaving them to fend for themselves.
For some it may be a fear of protracted pain and suffering. Some do suffer such deaths but surely given modern analgesics no-one needs to suffer sustained physical pain. I will never forget taking our very elderly cat to the vet for her lethal injection. I held her and stroked her until she went limp. A perfect end for her and I wept. I thought then as I do now why can’t we treat each other equally well when all the indications are our time has come?
Reasons then for the fear of death may be many and various. Certainly they all need to be explored and we need to be prepared to do this. Ideally we should have opportunities to think about and discuss our feelings and how we want our deaths to be and how to help ourselves and our families prepare long before the need arises. This should not be seen as “morbid” and “depressing”, but – like the writing of a will or the planning of a funeral – a mark of responsibility, of grown-up behaviour. More than that to have planned, thought about and discussed it takes a great weight off one’s mind and makes it much easier to enjoy the present. That I know. Our happiness is only genuine if based on reality – in this case on the certainty that some time we are going to die – rather than on the fantasy that we will live for ever and that thought of it is best excluded from our consideration. I think we all need to give our deaths serious thought and discuss with those who mean most to us how it can best be done and what our attitude is towards medically assited death pro or con.
Will this solve the “Dementia tsunami?” Initially I doubt it, but in the long term it could bring about a “culture change” so that making such a choice as medically assisted death becomes generally acceptaable. If that were so surely more medical and caring resources could be sustainable and focused on curative procedures and short term palliative care rather than being tied up in funding and supporting those who are no longer really with us or for whom life has become increasingly miserable. As a society and as individuals we have a choice we need to make. Alternatively we can just muddle through until we face the reality of “unsustainable.”
http://www.hpad.org.uk/the-need-for-change/ Read Professor Tallis on this whole subject. Here you have the views of a very senior geriatrician who has changed his mind.
I found the BBC documentary made by Terry Pratchett on Dignitas and Assisted Dying impressive. In it he interviewed three men, a cabbie in a hospice who did not want assisted dying , a man in his forties with severe MS living on his own in straightened circumstances who after repeated unsuccessful attempts at suicide had scraped together the money for the trip to Zurich and who was supported at the end by his mother and a very wealthy man in his late sixties with motor neurone disease who supported by his wife bravely chose to allow his death to be recorded and shown.
It was I thought a sensitive, balanced, compassionate and very well made programme. Having followed a good deal of press reports that came out afterwards I was depressed if not surprised at the obviously orchestrated attack it suffered from those who complained about it to the BBC BEFORE it was shown and by those who wrote about it having not seen it. I also was saddened by the blinkered and shrill reactions of those against assisted dying who it seemed to me showed no appreciation or respect for those who had exposed themselves and their feelings to take part in the programme, even if they thought they had not made the right choice.
More impressive was David Aaronovitch’s article in the Times 16th June in which he describes spending an hour with the Dignitas doctor Erika Preisig in the Newsnight hospitality suite before commenting on the programme with Jeremy Paxman. He describes Dr Preisig as “one of the most impressive women I have met” . Not something a person of his reputation says lightly. He concludes, “I trusted her ethics more than those of her critics.”
She, surprisingly is a Catholic and she described to him how a Catholic priest from Britain came to Zurich to die, “but decided it was too soon. He left telling Dr Presig that Dignitas was doing wonderful work. A few months later, his condition having worsened, he returned to die.” She also told him that with Swiss patients the two draughts method shown on the film is not used. People die in their own homes and are supplied with an intravenous drip with a handle that the person would turn themselves.
His conclusion at the end of an excellent article, “If we go down the Swiss road, it will be a victory of optimism and realism over pessimism and fantasy.” Strong stuff. Now you may like to explore my article, under the Ethics heading, Mortality. A Time to Live and A Time to Die.