THE PURPOSE OF THIS PAPER
In this paper I put the case that it be recognised as a basic human right that everyone should be able to die painlessly (and safely) at a time of their own choosing.
Human rights have developed as such issues as slavery, the treatment of women, racial, sexual, political and religious discrimination have been recognised at different times as violating the fundamental freedoms and respect due to every human being. So why at this time am I, along with many others, calling for this to be recognised first morally and then legally as a basic human right? The short answer is look at what is happening when the right to choose a safe, pain free death is widely denied.
THE NHS A GREAT ACHIEVEMENT.
We are very lucky to live in Great Britain with the NHS, a service that provides world class health care free at the point of use. As someone who has had a heart attack, followed months later by a triple bypass operation, I would not be here without it. It treats everyone, as near as is possible, as being of equal value, old or young, rich or poor, responsible or feckless. Certainly the treatment I received was excellent. It is an amazing achievement based on liberal values,(Beveridge) both Christian and Humanist. What is more it is operating at a time when medical science is making enormous strides allowing more and more of us to live longer so that to pass eighty is now the norm with an increasing number reaching ninety and 100, and this is set to increase.
The problem with this great achievement, as often happens, is the unintended consequences. The proportion of the population over working age is increasing rapidly – both here and in “developed” countries across the globe. What is more here the proportion of those who are over sixty who have serious health problems and disabilities which require expensive and often frequent treatment has reached a third of those 65-74 and a half of those 75 or older. What is more while many, who are older, particularly the better off, are able to enjoy healthy, active , autonomous lives, many more, particularly those who have had unskilled occupations, become increasingly dependent on state funded medical services and social care. This is already placing increasing strain on those who are younger and in work and pushing up the cost of running the country to what is increasingly seen as an unsustainable level.
This problem however is not unique to the UK. It is happening across Europe and most tellingly in the US, so let us start by looking there. In the US – as is the case also here – the top few percent of earners are getting richer and richer and able to buy more and better private health and social care and live easier lives. In the US with no NHS the majority in the middle have to buy very expensive insurance which provides limited health care while those who develop long standing conditions such as a recurring heart problem can find themselves bankrupted. Those at the bottom, some 40 million Americans, have no health care at all and die much younger and quicker.
Obama Care aims to make insurance cover both compulsory and available to all with the hope that everyone will be in a situation similar to that found in Europe and the UK. The Tea Party Republicans however claim that in the long term the costs of these policies will grow so forcing up an overall national debt which cannot be sustained. Opposed to tax rises they are prepared to allow the present situation to continue in which millions will be eligible for no or very restricted health and social care and will die younger, again they are happy that an elite get the best care in the world and die much older. Is such a polarised, divided and inequitable society what we would like to see here? Of the crisis the Economist (Oct 19 p 12) has this to say, “Eventually demography – and the huge tribe of baby-boomers who expect pensions and health care, will bankrupt the country. All this age-related spending needs a “fiscal adjustment” (i.e. a tax hike) of 11.7% of GDP.” You can’t get a plainer warning of the crisis than that.
A DEATH DEFYING CULTURE
What then is causing this near global problem? Obviously everyone wants to live long and well. Better diet and health care certainly are driving up life expectancy across the world, but we are also facing a cultural phenomenon particularly in the “developed world.”. We need recognise we live in a culture which sees death as the enemy, the final foe. Every death is seen as an unspoken tragedy and it is seen as a tragedy that we cannot and do not live “for ever.” In a culture where, even amongst the religious, belief in any form of life after death is waning, the fight is on to extend individual life even further. The latest spectacular example of this is a six page article in Time magazine (Sept 30 -2013) extolling Google who are determined it seems “to treat aging as a disease rather than a fact of life” and are out to beat it by putting up a $33 million dollar Breakthrough Prize in Life Sciences “aimed at curing intractable diseases and extending human life.” The fear of a painful death and the fear that death may or will bring a wipe-out of individual consciousness has become confused with a fear and rejection of dying as inevitable and a fear of even thinking about death.
Of course to find someone is facing death as a child or when young and inexperienced really is tragic. Those who find themselves severely disabled or facing life limiting conditions while young for whatever reason deserve the support they need to make the most of what they have and can achieve – despite, as we must recognise, the extremely high costs this support can entail.
APPROACHING MORTALITY POSITIVELY
Basically, what makes facing a premature death tragic is the awareness that conscious self-aware life is the most precious thing we have. If however we have lived and experienced a good full life of some “three score years and ten” Psalm 90 – while certainly not seeking to end it, we should have no fear of death and certainly no desire to “live forever” in any literal sense. If we reflect we can see it is simply part of the deal. Life has a beginning, a middle and an end. At the same time to fear a painful, drawn out, debilitating, undignified and often miserable end to our lives is quite reasonable and something we certainly should reject as unnecessary and demeaning when we now know exactly how this can quite easily be avoided. As Professor Stephen Hawking so graphically stated recently – we would not let it happen to our cat.
What I wish to see then is not just a change in the law to legalise assisted dying, but a move towards a deep cultural and attitude change in society based on a realistic and positive attitude towards our mortality. Death is not a defeat but the inevitable and proper end to every life. Our bodies and brains have evolved to work well for but a limited period, (in fact without death there would have been no evolving at all!) and while medical science and good care services can extend that period and enable us to function well physically and mentally for some years longer, the end of the process is, and always will be- whatever the Google prize-winners may find – the same, we die. What is more we need to see that our mortality is a positive good which facilitates necessary changes as each generation makes way for the next. After a full life our mortality is not something to be feared and fought against, but to be recognised as a necessary part of life, as necessary as breathing. Facing this in a mature and responsible way and planning for when it will happen is an essential part of being an aware, responsible person.
WHAT WE SHOULD BE ABLE TO EXPECT. HIGH QUALITY CARE AND THE CHOICE WHEN TO DIE
What I am saying is that if we hang on to this death fearing and death denying mind-set we are hastening the day when universal health care and social care becomes completely unsustainable and breaks down in the face of a dangerously imbalanced demographic dominated by the elderly frail and ill in need of ever more state provided care as they live far longer without much family support. What we need is a culture change where the end of a life and a good death can be both wept over and celebrated. We need a culture change where a substantial proportion of the elderly choose to die when they are ready rather than hang on for years of unhappiness, loneliness, discomfort and misery, just because they are frightened to die or because they have never had the chance to think about the option of a painless, dignified passing.
I ask for others what I want for myself. I want to live for as long as I judge the quality of my life makes living worth while. This is something only I and certainly no-one else can decide for me. I also hope to be able to access on the NHS high quality medical care and good social care for as long as I need it to enable me to live comfortably. If however my health deteriorates to a point where I judge I have had enough of pain and discomfort, enough of feeling I am a useless burden on my family, or know that I am beginning to “loose my marbles” for dementia is setting in then I would rather choose to die and be remembered as the person I have become and not as a miserably diminished or twisted shadow of my former self. If and when I reach that point I wish to be able to die at a time of my choosing with dignity and even in a spirit of celebration and gratitude for what I have achieved and received over the course of my life.
You can find no more shocking document describing what we are in for as a country than The Alzheimer’s Research Trust’s report Dementia 2010 . This 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 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. Because dementia sufferers lose their capacity for autonomy and discernment they are excluded from most assisted dying schemes – though not I think in Holland and Belgium. This is something that just has to be grasped as this condition alone could imperil the whole of the NHS and the national economy. There has to be a way of allowing anyone who finds themselves on the dementia pathway to either choose an assisted death early on or to pass the power to decide when they are to die to a trusted party, spouse, doctor, solicitor or even friend.
This seems to me the point to mention our legacy, what we leave behind. There are two parts to this, material and non-material. We could call the non-material the spiritual or mental legacy. Of course a material inheritance can be important, for some very important – even if for some it turns out to be a mixed blessing. However if you really think about it, it is the non-material “spiritual legacy” that is most important. Think of what we pass on by example and discussion of our attitudes and values, memories and experiences. Think of the moments of love and sharing we have had, for whatever we may believe about “life after death” we know that in many ways we live on in those closest to us. Nature and nurture. And we want our legacy in this sense to be a good one. What is different about what is happening now as compared to what happened in the past is just how long – often many years, the chronically sick, handicapped and demented can hang on. They hang on exhausting their families and using up all their resources both emotional and material or are left isolated and lonely, on their own or in “care homes.” As a result by the time people die – after having lived good, useful lives, loved by their children and respected for their work and achievements, much of that good legacy has been dissipated and forgotten so all that is left is a sense of relief that “the loved one” has finally “let go.”.
In the case of many dementia patients, partners, children and grandchildren often have to see their loved one live on for years. Their legacy is to be left with the most painful memories and in many cases no other inheritance, it all having been spent on someone they once loved, but whose real personality has long disappeared. That is a high price to pay for medical advances. Is it really necessary?
THE DANGERS FOR THE VULNERABLE. THE ANGLICAN RESPONSE
In making a response to the Joffee Bill to allow assisted dying the C of E issued this careful statement, “. The question must be asked: on balance, might a change in the law place more vulnerable people at increased risk of neglect, marginalisation or abuse? Unless the answer can be a demonstrable and convincing ‘no’ it would be negligent in the extreme to contemplate such a change.”
My response to this? First it is good to see the Church focus on the world as it is and make no reference to supernatural sanctions or the teaching that suicide might be the one “unforgivable sin.” It seems to me however that the present law which forbids assisted dying is already – as a result of the medical advances and the shifting demographic – contributing to a situation where “more vulnerable people are placed at increased risk of neglect, marginalisation and abuse”. Almost daily we read how the pressures on care homes and hospitals are growing, and growing to the point of breakdown – and this will not be put right – as some have recently suggested – by installing spy cameras.
In November 2012 the Church also put out a statement which said that personal autonomy and the protection of life were both important complementary principles, but that when in conflict the protection of life should take priority over personal autonomy since every human life is uniquely and equally valuable. I agree human life is uniquely valuable but note that nowhere is there any recognition in their statement that “personal autonomy” extends to the point where it is recognised that it would be right for someone to choose assisted death rather than suffer, and that I think is a serious omission.
In fact saying that “the protection of life takes priority over personal autonomy” means they are saying it is tough so many have to suffer a miserable painful death, but better they suffer that than the current law which bans them choosing assisted dying be changed. Why? Because that might result in opening the floodgates to a variety of abuses they list. These are: new obligations on doctors and nurses, elastic legal interpretations, hidden pressures on patients and staff, an undermining of the doctor patient relationship and an overloading on palliative care staff. So they are saying that patients should suffer now so that others might not suffer from potential abuses in the future. To commend such a compulsory sacrifice seems a bit odd. Are they really saying that it is right to place every possible obstacle in the path of a person who wants help to end their own life to avoid suffering in order to reduce the opportunities of persons unknown to endanger the lives of others judged to be vulnerable? Surely the right answer is to put in place reasonable safeguards to reduce the opportunities for abuse rather than condemn people to suffer and deny them the opportunity to choose.
Again my response is that certainly the abuses they list and others such as what happened at the Mid Staffs Hospital (2004-2009) when hundreds died needlessly because some doctors, nurses and health administrators wished to stick to their budgets and keep down costs need to be guarded against. This scandal and the stories that are appearing almost daily show that many abuses are already taking place in a situation where assisted dying is illegal because the whole health and social care system is becoming seriously overloaded.
WHAT WOULD HAPPEN IF THE UPKEEP OF THE NHS BECAME UNSUSTAINABLE
I would add to this a point that the Church statements do not address. If the NHS as it operates presently was – as a result of the shifting demographic and the cuts planned for the future – to start to break down in a widespread way, what would that mean? The answer is look at America and the Third World and add to it the work of the Google inspired life extenders. The result? A situation where the rich elite live on in their gated communities to be 150 or 200 years old with incredibly sophisticated health care while the majority who cannot afford comprehensive private care suffer more and more and die – just as they are doing in the slums and impoverished hospitals of Africa, South America, India and other “Third World” scenarios.
In speaking out like this without specialist medical or legal knowledge I may be underestimating the difficulties of setting up a legal, administrative and medical framework that could protect patients adequately from forms of abuse that the legalisation of assisted dying might make possible. The point I would make is it seems to me that leaving the law unchanged underestimates the negative consequences that flow from the current situation and the failures and abuse it can and will generate.
CURRENT ASSISTED DYING PLANS
Assisted dying is now legal in Oregon, Washington and Vermont in the US and in Switzerland, The Netherlands, Belgium and Luxembourg. In all of these it is for those in great pain and terminally ill only, and is surrounded by a high wall of safeguards so that in none of them has there been many (or any) reports of abuse. These schemes are working and to be welcomed and it would be great if something similar could be introduced here, but it is a step that currently only caters for the needs of a small, self-confident, well-educated and financially secure minority. In Oregon out of 31,000 deaths in 2011 only 90 asked for medication and only 60 used it. This means with around .2% choosing it where legal it has currently little or no impact on the big problems, dementia and the aged who are chronically sick, disabled and miserable.
Nor is there much evidence that the existence of assisted dying has ushered in much of a culture change as regards attitudes towards dying. There is however one possible exception. This is in Holland. “Doctor-administered euthanasia for terminally ill people facing unbearable suffering was legalised in the Netherlands in 2002. For several years, the reported number of cases declined, but it has risen steadily since 2006. In 2012, a record 4,188 cases were recorded, about 3% of all deaths in the Netherlands, against 1,923 in 2006. Most cases are due to cancer.” (the Guardian) Three percent of deaths is significant and if it continues it will be more so and seems to show more and more people in Holland are choosing to take advantage of this option.
COPING WELL AND THEN CHOOSING TO GO
Now of course I am well aware that many if not most people who are chronically sick and disabled adapt incredibly well to their condition, are amazingly positive and enjoy their lives. They deserve our admiration and support. If disabled I would hope to be able to behave in that way. However that does not mean that eventually they do not reach a point when they feel they have had enough of the struggle and would like some help to let go. This was done quite legally in the case of two of my friends who for years dealt amazingly well with kidney dialysis, but who in the end both chose to come off their machines and die. Neither were in any sense depressed and miserable. One a retired nurse moved in with her daughter, also a nurse, explained her choice and invited all her friends and family to come and see her, showed a lively interest in them all until she slipped painlessly into a final coma. The other, a retired police officer, announced very publicly his decision, had a big party for all his friends and family and went off on a cruise with his wife before retiring to a hospice where many visited him until he died. I am sure many of us envied that they could choose to go as they both did and have their decision sympathetically received and not brushed aside or disapproved of or treated as if they must be suffering from some mental condition.
THE HOSPICE MOVEMENT AND THE LIVERPOOL PATHWAY
Since its inception as a result of the work of Dr Cicely Saunders opening St Christopher’s in 1967 the hospice movement has grown immensely to focus on giving people the opportunity of a “good death” either at home with Macmillan nurses or in a hospice where excellent care focused on reducing pain and improving the quality of life for those facing “life-limiting” conditions is given. It is hard to remember how recent this movement is and what a significant and welcome culture change it has brought about in attitudes to death and dying. Initially it faced prejudice and suspicion amongst medical and nursing staff and there were many breakdowns in communication and failures by GPs and hospitals to refer patients to these new services as they became available. Since then the hospice movement has been widely accepted and has become global.
Concentrating on cancer its achievements have been immense with its staff becoming specialists in a whole new area of medicine, palliative care, the use of analgesics and in this country, the use of diamorphine – (the medical term for heroin – typically banned in the US) At the same time leaders of the hospice movement do not support assisted dying on the grounds that they do not think it is necessary and that they can manage virtually all cases without resorting to it. They do not however deal with dementia patients at no risk of imminent death and their use of life limiting doses of analgesics can be hard to distinguish from crossing the line into assisted dying. They are however largely dependent on charitable giving and shy away from controversy.
Working with the NHS in Liverpool the Marie Curie nursing foundation developed a programme of integrated care for those recognised to be facing death in NHS hospitals and this was widely taken up across the service by 2006. The aim was to make sure that everyone involved recognised that the patient was dying and to see that they would be treated appropriately. This was the first time a proper focus was given to the needs of the dying in NHS hospitals where the personal needs of a patient could be lost sight of as they were moved from department to department. I came across enthusiastic nurses and administrators who told me the “Liverpool Pathway” was greatly needed and provided a huge change in attitude in the NHS. They went further and wanted GPs to place patients they thought were likely to die in the next 12 months on a list to be flagged up and their needs made explicit for both medical and social carers so everyone involved was informed. One problem I heard was that most people are now dying in hospital when they would prefer to die at home. This blocks beds for others, is very expensive and in many cases most inappropriate. Much better to have the diamorphine and analgesics kept in the patient’s home fridge so they could be available to be administered by the family GP.
Sadly the Liverpool Pathway became part of a bureaucratic system which resulted in some being very inappropriately treated. Some without the knowledge of themselves or their families were put on severe analgesics and given “nil by mouth” so they died or almost died months earlier than they would otherwise have done without their having had any choice in the matter. This attracted the wrath of the Daily Mail and now the “Liverpool Pathway” the Secretary of State for Health says is “being phased out” rather than reformed. What a pity. So we can see how knee jerk reactions and fear of “euthanasia and assisted dying” can be whipped up. It also shows how difficult and possibly dangerous it is to introduce a sensitive change like this into the NHS when it is so strapped for cash.
While my thinking and focus in this article has been on the right to die being recognised for those nearing the end of their “natural” lives, no discussion of the matter can avoid looking at suicide. We need to look at the truly tragic cases of the 6,045 in 2011 who committed suicide 4,552 of them men, the highest rate being amongst those 30-44. An increasing number however are older men who the Samaritan report says are facing “a perfect storm” with money, employment, relationship breakdown, alcohol and drug abuse “issues” leading them to feel useless, miserable and get deeply depressed. Their deaths not only waste their lives, but cause huge suffering to their families. Those who succeed are however a tiny proportion of those who call the Samaritans or the Ambulance Service in a high proportion of cases after heavy drinking and or self-harming – These are often more cries for help than real attempts at suicide. All of these need help, counselling and support services to help them regain their autonomy and a sense of purpose in their lives. Providing such care is very expensive and few of them get it. Should they have the right to choose death and have access to approved means to do so painlessly? Instinctively one says no, they are not ready for it. One thing we do know is that criminalising attempted suicide as was the case before 1961 did not work. In looking at this however I have found what Ludwig Minelli has to say thought provoking.
THE FOUNDER OF DIGNITAS ON SUICIDE AND MENTAL ILLNESS
Ludwig Minelli, founder of Dignitas, the Swiss group that provides assisted dying for non-Swiss in Zurich, is a Swiss human rights lawyer, and he has an interesting take on suicide. He sees suicide as a basic human right, an expression of our autonomy, of our right and capacity to choose for ourselves. At the same time he considers the number of young, sad and depressed people who commit or seek to commit suicide a terrible tragedy and waste of their lives. He thinks however that the basic way they are treated is all wrong because the assumption is made that suicide should be condemned and we should try to stop it, but that is foolish for there is no way that people can be prevented from committing suicide if they are determined to do so.
His thinking has been influenced by his surprising experience with what happens at Dignitas. Here he has found 70% of those who sign up and are accepted as members after having passed the first step of being evaluated as having “the capacity for discernment” needed under Swiss law and so are suitable for the service Dignitas provides, never choose to come on the second and final trip to Zurich and never contact Dignitas again. Almost all however continue to pay their annual subscription to remain members – often until they die. This he thinks is because they find it a comfort to know that they can use Dignitas as a fall-back position if they need to. This has lead him to think that the best way to deal with young people seeking suicide because of emotional problems is not to try and stop them thinking about suicide, but to say that yes “suicide is a marvellous possibility for a human being to withdraw themselves from a situation which is unbearable”. That however means they should look at it really carefully. To do it on your own in your own way is far from safe and can lay you open to all sorts of dreadful failed suicide scenarios. Do you want to risk one of those? Also do you really want to do it alone and have you really thought through the impact on your family of going through it without them?
He argues that if young seekers of suicide were sympathetically confronted with the opportunity of doing it in a properly assisted way, legally and with their autonomy respected, then far more would change their minds on their own than those who at present in a depressed and isolated state go through with it. At first such a counter-intuitive approach sounds implausible, but it may have some mileage in dealing with those whose attempt to kill themselves was serious. It strikes me however that he is showing that there is a huge difference between suicide as an expression of a life which is seen as an unbearable failure and the choice of assisted dying after what could have been a very happy life but is chosen as a way of dealing rationally with the extended pain and discomfort which modern medicine makes all too possible – even as it extends our lives, what he calls “the black side” of medical advances.
Minelli would go further. In Switzerland a doctor would lose his or her licence to practice if they signed a lethal prescription for someone judged to lack “a capacity for discernment” as a result of mental illness, such as being bipolar or schizophrenic. He says many chronic long term sufferers from such conditions have lucid intervals and for them these periods should be enough for them to be able to get what they want. Currently however Dignitas does not do that. Fifty years ago such people would have been in psychiatric hospitals, now so-called “care in the community” means many end up in prison or on the streets. Progress?
My reaction to Minelli is that on both counts he may have a point. Some of the chronically psychotic should be able to choose an assisted death when they are going through a stable period but that would certainly need extra careful safeguarding. Some young suicide seekers might be helped by Minelli’s arguments as part of their counselling yet as it appears so many of them wander around in drug and alcohol induced states and are so depressed it would seem to me they have such limited autonomy or discernment that there should be no easy access for them to assisted dying in any form.
Does the relatively small take-up of assisted dying we have noted mean when we also take into account the hysterical media backlash against the Liverpool Pathway that the sort of culture change and shift in attitudes towards assisted dying I am advocating is highly unlikely to happen? And what of the idea that the introduction of assisted dying might make a difference to the future sustainability of the NHS? As regards culture change I think there are grounds for optimism. Questionnaires given to the public persistently show backing on a large scale for the introduction of assisted dying and this is a growing trend. What is more culture changes can take place surprisingly quickly. Assisted dying groups are growing and now include subsections for medical professionals and the physically handicapped. Think of the culture change that has resulted in the legalisation and acceptance of Gay Marriage and the acceptance of a legal prohibition on smoking in public places. Twenty years ago both changes were almost unimaginable. Once the tide starts to turn all sorts of things could happen.
As for the NHS that is much more problematic as it would entail an enormous early take-up of assisted dying by those not facing imminent death anyway to make a financial difference. The arrival of the “dementia tsunami” before 2030 could however make that difference and bring about the culture and legal changes necessary to accept what I have suggested unless new miracle drugs are discovered to put off the problem for a few years. There may however be forces in our society that will reject such changes with hysterical fanaticism and prefer a British version of the Tea Party “solution”, i.e. be prepared to see the NHS collapse.
How might a change of attitudes and culture show itself? If next year in May 2014 Lord Falconer’s very restricted Assisted Dying Bill gets through Parliament and assisted dying became legal here, changes could start to grow. They will however be slow for his bill will only apply to those in a terminal condition. Still instead of the rather sad and lonely trips to Dignitas in Switzerland a tiny minority are currently taking, we could see some unexpected changes evolving. Alongside conventional post death funerals we might see the growth of End of Life Events. These could be celebration, reflection and coming together events. Film makers and writers could be employed composing videos and power-point presentations of people’s lives to be played at the event where the atmosphere could be more of a reception than a funeral. Imagine being able to organise a really good party or meal where one was able to say goodbye to family and friends before retiring with those closest for the final sleep.
When such events become more mainstream they could take many different forms, depending on the situation, personality, beliefs and values of those concerned. Some would continue to keep the whole thing private. Some however might seek a religious ceremony and while churches, mosques and synagogues might at first ban such events, their adoption over a time does not seem to me that far fetched, particularly when clergy discover that some of their most faithful parishoners were choosing “the Falconer Way.” Biblical texts could be selected and seen in a new light and Anglicans might devise a new Liturgy for the Departing. Others might also see organising these events creates new opportunities for providing help, support and comfort to individuals and families facing a farewell to a loved one. Other churches and religions might then take this up.
So to conclude I would argue that the right to die at a time of our own choosing should be incorporated into law and become part of Human Rights Legislation. I hope that this might help and encourage a deep cultural change in our attitudes towards death, a change which would recognise that while modern medicine gives us the opportunity to live longer, the inevitable downside is that many of us may end up facing mental and physical changes which diminish us as persons and which we see no reason we or those who mean most to us should have to endure. When we reach this point, subject to safeguards to prevent us being pressured for monetary gain, a fear the countries which have legalised assisted dying have found has been greatly over-estimated, we should be able to choose if we wish to continue to live or to die, or in some cases, such as dementia when we fear that the power to make a responsible choice may be lost, be able in advance to pass that choice to a doctor or family member to carry out what we have clearly stipulated our choice to be at what should be agreed is the right time.
It is beyond my competence here to spell out exactly how assisted dying should be done. Should it be the Oregon model of giving patients the lethal medication to take as and when they choose or should it be administered by a doctor as in Holland or should assisted dying be carried out by an agency quite separate from either the NHS or the hospices like an English version of Dignitas, or should it be an extension of hospice services? The experience of other countries needs to be monitored by UK professionals and different models could possibly be introduced gradually to see how they work and to see what unforeseen consequences arise. Doing nothing and leaving the situation as it is strikes me as increasingly likely to result in more people dying early or suffering from chronic conditions for longer than if these changes are adopted. Finally I would say that a society that recognises we have a right to die safely and painlessly at a time of our choosing seems to me to show greater respect for our unique value as responsible, aware persons able to choose what we think is best for ourselves and our families than a society that denies us that choice.
John Baxter 25/10/2013
Congratulations on a very well investigated and thought out case for assisted dying.. I think because of the difficulty of implementing it as you say the only answer would be to have small experimental projects. How you would ever get it through parliament I cant think. I fear it wont be in my life time ! (84) Anyway good for you . All the best J.B.JJB Thank you.
NC writes:Hi John, As you would expect from our discussions I agree with the thrust of the arguments you put forward, in fact I would support the paper with two amendments.
My comments on your paper.
It will become a fundamental human right for anyone of any age and in any circumstance of health to choose the time and place when they want to die;
there will need to be eligibility rules: eg you are allowed to die if
you are over 25 years old, and you are in great pain and have no chance of being cured, or you are a quadriplegic, or you have advance warning that you are about to become demented (like Terry Pratchett), or you are a sufferer from schizophrenia and, during a period of sanity you can look back on your previous episodes of insanity.
No doubt such conditions could in principle be negotiated, but it would be a politician’s nightmare to try to do so.
Derek H. JJB : Thank you.
Hi John. I found your paper very interesting. Setting your argument partly in an economic context is quite brave as it could be interpreted by some as being a call for euthanasia on economic grounds. However, you are right – the unsustainable cost of an increasingly elderly population, dependent on health and social care is very real, although I don’t think establishing the right to die will make much of a difference. (JJB I agree, at first it might make little difference but if a culture change took root then it could)
Where I have substantial concerns, though, are around the issues of suicide among the young and dementia in the old. Many young people dally with the idea of suicide, sometimes acting on these thoughts. If they survive, unless they have deep-seated problems, most recover from their depression and learn to cope when they recur. If these episodes are triggered by neurological imbalance, often they can be controlled by drugs. I’m not sure that a fall-back position as Minelli suggests would be enough to deter many. But he may be right. JJB I share your reservations regarding young suicide seekers. The question is what is the best way to put them off. Minelli may be on to something. I would like to hear a specialist psychologists reaction.
Dementia is more problematic. You and I may decide that no way do we wish to have a protracted existence as a ga-ga resident in a care home and sign a document agreeing to be put out of misery at the “right time”. However, the “right time” cannot be written in stone and dementia/Alzheimer patients vary so much in the manner of deterioration and in the ways in which they experience their lives as the illness progresses. The onus deciding the right time will be on doctors and relatives and they might have conflicting perceptions of whether the person was contented in his/her decline or frustrated and unhappy. I suppose that I live in hope that drugs to stop the destruction of neurones might be available, (which is being worked on currently). If not, then I hope for the strength and opportunity to put an end to it myself. JJB and to do that safely requires some tricky changes to the law which many assisted dying jurisdictions do not give for such cases. This I think is the really urgent problem.
It also raises the issue of whether brain damage at birth resulting in severe mental disability could ever be regarded as a reason for euthanasia – echoes of 1930’s Germany. Would that be the next step? JJB It is our capacity for reflective awareness or consciousness that makes us persons – not membership of a particular species. Addressed at some length in http://www.johnbaxter.org/ethics/murder-by-another-name/ a careful examination of Abortion and surrounding issues. This paper does not address if and when euthanasia of the severely handicapped is or is not justified, but argues for the right of aware, responsible persons to have the right to choose when to die. Thank you JC for challenging questions.