The day after the day before

I can’t say I’m surprised, but I am disappointed. Dignity in Dying (formerly the Voluntary Euthanasia Society) has invested many hundreds of thousands, if not millions, of pounds behind well publicised personal stories and legal cases which have been very effective in persuading general opinion that dying is frequently nasty and that we should have the right to choose when and how to die. That organisation always resists using the term ‘suicide’, which is what they advocate, realising that it opens up the accusation of devaluing life. So I’m not surprised that MPs have after an impressive debate by a narrow majority eventually given way to the pressure. (My highlight speeches: Tom Tugenhadt (MP for Tonbridge, Con) and Preet Kaur Gill (MP for Edgbaston, Lab) speaking against, and lowlight: Kim Malthouse (MP for NWHampshire, Con) speaking for.) 

So… along with many thousands of disabled and chronically ill people our worst fears have been realised. The House of Commons have narrowly voted through Kim Leadbeater’s Private Member’s Assisted Dying Bill (Terminally Ill Adults (End of Life) Bill). The majority of 23 means that had 12 voted the other way, it would have failed. I am disappointed. However in voting for assisted dying/suicide MPs have inadvertently added to our society’s fear of death, our reluctance to accept dying is as much a part of life as birth. In the words of Job, ‘The Lord gave and the Lord has taken away.’ 

Since having my particular rare and slow form of Motor Neurone Disease for 25 years, the idea of taking my own life has occurred to me and to some professionals. I have as a result thought long and hard about the subject. Personally, although utterly disabled and needing 24/7 hour care, I have no desire to shorten my life, but more generally I also believe that any legalising of causing or contributing to someone’s death is dangerous for society. The sanctity of life or right to life is a principle too important ever to be breached. Once one exception is allowed, you give permission to further breaches in the future. Contemporary examples abroad as well as European history teach us that despite all the initial limitations mission creep will happen. Other exceptions will be legalised on seemingly reasonable grounds, if for six months, why not for twelve, or 24? Why not for any length of “intolerable” suffering? Why not for those who are or consider themselves to be a “burden”? Why not for those who will be too disabled to contribute economically to society? There's not one jurisdiction abroad where the first narrow restrictions have not bit by bit been broadened.

One of the most important interventions before the vote was, in my view, that by the Royal College of Physicians and the Royal College of Psychiatrists a week ago expressing their reservations, including: “Vulnerable patients particularly those with remediable mental health or other unmet needs, are not adequately protected by the current bill.” It is very easy, and understandable, for people with long term disability or incurable illness (such as myself) to have severe depression and mood swings. I’m sorry that not enough MPs heeded the advice of the most involved professional bodies. 


However I have a number of friends who disagree with me, often after personal experience of watching a loved one die. I sympathise and I suppose that I must be glad for them that the MPs have represented their wishes. And I would never condemn them if they decided to choose the route of assisted dying for themselves. I hope they won’t have to.

Meanwhile I trust that, when the Bill comes to the upper house, their Lordships will fulfil their function of revising it wisely and effectively. They certainly have relevant expertise, for example, judges, ethicists, and most relevantly in the field of palliative care - which is in danger of being squeezed following this bill. As Gordon Brown pertinently asked, “When only a small fraction of the population are expected to choose assisted dying, would it not be better to focus all our energies on improving all-round hospice care to reach everyone in need of end-of-life support?” 

"Let me die - naturally" The Future of the NHS - a patient's eye view

Recently the news has been full of stories concerning health.  On 6^th January Noel Conway’s application for a judicial review of the Suicide Act hit the headlines briefly.  In the following week the Red Cross described the situation in the NHS as being a ‘humanitarian crisis’, which the government vehemently denied and characterised as hyperbole.  Then Mrs May effectively told GPs that the stress on A&E departments was their fault for not having more weekend opening.  It seems to me that, intended or not, there is the makings of a perfect storm here.

I cannot but sympathise with Noel Conway.  He has the most common form of Motor Neurone Disease (ALS) and is seeking a judicial review of the 1961 Suicide Act on the grounds that it infringes his human rights.  ‘I have a right to determine how and when I die, and I want to do so when I have a degree of dignity left to me.’  I too have a form of MND; mine is Primary Lateral Sclerosis, a very prolonged form of the disorder.  I can utterly understand his fear of increasing dependency, becoming ‘entombed’ in his body and dying.  However I have long argued that legalising assisted dying is fraught with dangers and not the way society should go, no matter its attractions.  The success of its implementation elsewhere in the world is utterly debatable.

My purpose here is not to re-enter the debates which have been exhaustively rehearsed in both houses of Parliament and in all the courts in the land over very recent years, nor to quarrel with Mr Conway’s decision.  I should prefer to step off the carousel of fear to which Dignity in Dying chooses to give an occasional push, and ask, ‘Could there possibly be a different way forward?’ 

I want to explore a radical alternative.  In fact it is a rethink of our society’s priorities and is intimately related to the deluge of health related stories.  Like many industrialised nations we are sitting on a demographic time-bomb.  The baby-boomers are beginning to draw their pensions.  The number of us over 85 is forecast to have doubled by 2030, creating an increasing ‘burden’ as age-related illnesses necessitate more intensive and extensive care.  It all costs money. 

The NHS, if not in crisis, is undoubtedly in dire straits.  An exponentially rising demand on the national purse seems inevitable.  The cheapest solution would be to legalise euthanasia, voluntary or even involuntary.  However 20^th century history should have taught us that this is an inhumane road, for example, leading to the deaths of 275,000 people between 1939 and 1945 under Aktion 4, based on ‘the idea that there is such a thing as a life not worthy to be lived’ (Leo Alexander, writing after the Nurenberg trials).  An easy solution but finally unacceptable.

My observation is this: Death is natural; humans causing death is unnatural. Our culture appears to proclaim that death is unnatural, to be feared and postponed at all costs.  Yet it is universally inevitable.  We will all meet it.  Frequently some medical advance or some public health campaign will be greeted as saving so many hundreds, or thousands, of lives, when the truth is it could extend those lives by a few months or years.  The temptation on the cash-strapped research community to allow such exaggeration is understandable.  Doubtless the dream suits the pharmaceutical industry, the illusion of virtual immortality.  However it is a dream, which would turn out to be a nightmare.

Is there a better way?  I believe there is.  First of all, let’s not be afraid of saying that death is part of life.  Instead of making it a fearful monster to be avoided, let’s admit it is a fact to be faced.  And then, as a nation, let’s seek to make the natural process of dying as pleasant – or at least not unpleasant – as possible, something to be celebrated.

Would it not be better if, instead of pouring funding and resources into officiously keeping alive, the national health budget was shifted to surrounding natural dying with comfort and dignity?  We pay lip-service to the importance of palliative care.  We are rightly proud of the history of hospice care in this country.  On average government funding accounts for a third of hospice income.  Charities such as Macmillan Care receive a tiny proportion of their income in grants.  In other words palliative care is predominantly funded voluntarily.  It is true that many people die in hospital (about 50%); it’s also true that most of us don’t want to.  Dying at home is the choice of 83%, a 2014 survey found .   Home care, where possible, is cheaper than hospital care. 

So I suggest a recalibration of the health and social care budget, designed to provide top-quality palliative care nationwide.  This would clearly involve a massive programme of specialist training as well as simple training in home care.  It would mean reversing the policy of cutting the district nursing service.  It would also mean that we rethink the treatments we, the public, automatically demand for every eventuality at every stage of life.  We might have to accept more often doctors saying, ‘I'm sorry that we cannot do anything to prolong your life but we can offer you excellent care for the time that remains to you.’  One doctor told me, ‘Where I believe there is a problem is in highly expensive treatments to prolong lives that are ebbing away either with chemotherapy or intensive care.  We have a clamour that the treatment that prolongs the process of dying for a few months in a trial should be available to all.  Such results are a stepping stone to more effective treatments but not a justification for implementation across the board.’  If the NHS provided better end of life care, then  charities or individuals could step in to plug the gaps in research and non-essential treatments. 

Undoubtedly the definition of ‘essential’ in this context is one for society to debate and law-makers to decide.  It would be intolerable for doctors alone to decide the fate of patients.  Their calling is to ‘tread with care in matters of life and death’, and ‘not to play at God’ (modern Hippocratic Oath).  In order to achieve the sort of end of life care that would mitigate the fear of the process of dying would undoubtedly cost money.  How such funds would be raised, whether through more rigorous rationing of other NHS treatment or through hypothecated taxation or somehow else, is beyond my competence and the scope of this blog.

My primary purpose here is, as a patient, to join calls, such as those made by the 75 leading health experts to Theresa May on 11^th January, for radical solutions to the break-down of our health and care system.  It is not a problem for us that can wait for some utopian answer in 2020.  Let’s accept that we’ll die but avoid the unacceptable shortcut of the sirens’ road towards the cheap solution, euthanasia.

(A shorter version of this blog was first published in The Huffington Post on 20th January 2017)

Why "How to die?" - my question

I see I'm quoted in the Daily Mail today. Quite fairly I'm glad to say, although I don't think of myself as a "campaigner". Just someone with an insidious and very slow type of MND who is quite concerned about how little coverage good and natural dying receives in the media - of whom the BBC is just one example. And it matters because the media does a lot to shape public opinion, including in the area of suicide - which is of course the subject of tonight's BBC documentary, "How to die - Simon's choice". I shan't be watching tonight - but I might catch up tomorrow. Maybe the Mail's article tells me enough, including that Simon Binner's widow, Debbie, would have preferred him not to have gone to Switzerland. "I would have preferred him not to go,’ she admits. ‘There is a beauty in caring for someone who is dying. I loved Simon. I would have loved to nurse and cherish him to the end." What an amazing woman! 

In 2000 the World Health Organisation issued guidelines about the way the media should treat the matter of suicide. Near the beginning, there's a section headed: "IMPACT OF MEDIA REPORTING ON SUICIDE

"One of the earliest known associations between the media and suicide arose from Goethe’s novel Die Leiden des jungen Werther (The Sorrows of Young Werther), published in 1774. In that work the hero shoots himself after an ill-fated love, and shortly after its publication there were many reports of young men using the same method to commit suicide. This resulted in a ban of the book in several places (1). Hence the term “Werther effect”, used in the technical literature to designate imitation (or copycat) suicides.
"Other studies of the media’s role in suicide include a review going back to the last century in the United States (2). Another famous and recent case concerns the book Final Exit written by Derek Humphry: after the publication of this book, there was an increase in suicides in New York using the methods described (3). The publication of Suicide, mode d’emploi in France also led to an increase in the number of suicides (4). According to Philips and colleagues (5), the degree of publicity given to a suicide story is directly correlated with the number of subsequent suicides. Cases of suicide involving celebrities have had a particularly strong impact (6).
"Television also influences suicidal behaviour. Philips (7) showed an increase in suicide up to 10 days after television news reports of cases of suicide. As in the printed media, highly publicized stories that appear in multiple programmes on multiple channels seem to carry the greatest impact - all the more so if they involve celebrities. However, there are conflicting reports about the impact of fictional programmes: some show no effect, while others cause an increase in suicidal behaviour (8).
"The association between stage plays or music and suicidal behaviour has been poorly investigated and remains mainly anecdotal....
"Nevertheless, there is always the possibility that publicity about suicide might make the idea of suicide seem “normal”. Repeated and continual coverage of suicide tends to induce and promote suicidal preoccupations, particularly among adolescents and young adults."

The normalisation of suicide as a remedy for chronic and terminal illness, or disability, is the reason last November I wrote to Lord Hall, the BBC's Director General. Here's my letter, followed by the delayed reply from one of his underlings.

26^th November 2015

Dear Lord Hall

I am writing to you on a matter of personal concern to me as I have a chronic and life-limiting disease.

You were quoted two days ago as saying that the next charter should not be an attempt to tell the BBC what programmes it could or could not make.  Whilst I agree with that aim completely in principle, it is most important that the Corporation also maintains its commitment to editorial impartiality in all its output, especially in news.  To that end it needs to be accountable, ultimately to those who pay for it through their representatives.

My particular concern is to do with the Corporation’s treatment of end-of-life issues.  Although generally your news outlets make an effort to represent opposing views when the subject is debated, there seems to me a consistent disposition to focus nationally on stories of people ending their own lives (travelling to Dignitas etc) rather than on the many more who choose a natural death and the work of hospices, palliative care doctors and nurses.  I do of course realise that news consists of the exceptional.  Nevertheless, the media both reflect public opinion and mould public perception.

My wife woke up recently to hear an account of a ‘beautiful’ death at Dignitas.  A few weeks before, Victoria Derbyshire did a feature on a man who had announced his imminent death there.  I was in touch with the planning producer at the time who wrote to me.  ‘I will certainly talk to my editor about your suggestion of covering good end of life care on our programme – as I think that would definitely be a very interesting and important issue to cover.’   I have only praise for that producer who was more than helpful.

What concerns me is that inevitably in an organisation as large as the BBC there is a danger of an editorial orthodoxy which ironically discourages diversity of viewpoint in its creative output.  There are many inspiring stories of surviving against the odds and of good natural dying out there, which are newsworthy, and yet we see and hear precious few of them, it seems to me.

The media affect the mood and culture of our society.  To focus on stories of death can induce an atmosphere of fear and hopelessness in the audience.  Whatever is in the next charter, I hope it will keep in place some sort of independent oversight in order to ensure negative and positive are balanced in your output. 

Yours sincerely

Michael Wenham

Lord Hall of Birkenhead

Director-General

BBC

London W1A 1AA

cc         Rona Fairhead, BBC Trust

            Ed Vaizey MP

            The Rt Hon John Whittingdale

As the BBC might themselves put it, Lord Hall declined to reply but the corporation did issue a statement. A bland and predictable response, sadly. It remains to be seen whether we see any more positive programmes to encourage those of us with incurable disabling conditions that there is an alternative to topping ourselves.  

The letter The Guardian didn't print

A week ago, when I was away on a much-needed break with my family, the media, led by The Sun, was full of the case of Mr Bob Cole, a councillor from North Wales, who was due to commit suicide on the Friday afternoon in the "Dignitas" self-styled clinic in Zurich. It was clearly a media-event  pre-orchestrated by the pro-euthanasia lobby in this country. ITV had contacted me for an interview on the Thursday, but I wasn't then well enough to oblige. So I did the next best thing I could and sent a letter to The Guardian newspaper, before we left on holiday.

This was what I wrote:

Sir

I am sad to learn that The Sun has lent its megaphone in support of what appears to be the latest salvo in Dignity in Dying’s campaign to legalise assisted suicide.  No one can fail to be moved by Mr Cole’s suffering nor that of his late wife.  However the campaign threatens to open a Pandora’s box of unintended and dangerous consequences for those of us who suffer from chronic, terminal or disabling conditions – and indeed ultimately for our whole society.

Mr Cole is quoted as having “no wish to die in pain without any dignity”.  Neither do I.  I have a very slow form of MND, and although I don’t relish the prospect of dying I have confidence that my dignity will not be sacrificed and my symptoms will be well managed, thanks to advanced palliative care pioneered by the hospice movement.  Ironically, in our sophisticated culture, the populist campaign is based on an immature fear of the process of dying.  Rarely is that process easy, and as our population ages so the difficulties increase.  However short-circuiting the process, which is what Dignitas and assisted suicide offer, merely adds to fear and militates against acceptance of the inevitable, and good dying.  Deliberately ending life, also known as killing, is no way to go.  Expanding and investing in palliative care, which is real compassion, is the better way.  

The vast majority of disabled and vulnerable people are protected by the law as it stands, and fear any change.  To pass a law which admits that some lives are less valuable or worthy of protection, as has happened wherever euthanasia or assisted suicide have been made legal, is a thoroughly dangerous precedent.  I trust MPs resist the loud siren-call of press magnates and listen to the voice of informed reason.  Keep us safe.

Yours etc

Sadly, The Guardian, whilst making quite a thing of the event, chose not to print my response the next day. I am sorry because I think that opinion formers such as journalists and law makers such as MPs need to be made aware that euthanasia is not a good universally acknowledged - anything but.

Euthanasia - there is a better way

I talked to a professional carer a few weeks ago. She had been caring for someone with terminal cancer to the end. After that she had been on holiday, and had met another carer, a nurse, who'd worked in Switzerland, where assisted suicide is legalised. He too had been caring for a cancer patient. The doctor had prescribed lethal drugs for his patient but would not administer them. (In Switzerland doctors aren't allowed to do the actual deed.) But the nurse was compelled to do it, although it ran counter to his conscience. I presume the patient had requested it.

However the effect on the nurse had been catastrophic. Can you imagine being forced to kill someone when your whole conscience and all your convictions forbade the taking of life? How would you live with yourself? The answer for that nurse was to abandon his vocation and to drown his guilt in a cocktail of drink and drugs. It was taking him a long time to rehabilitate himself, and the scars and nightmares will never leave him, I imagine.

Such is one seldom considered effect of legalising assisted suicide. There are always others involved. There is always some impact on their psyches. It might inure them to the event - which cannot be desirable. Or it might scar them as it did that French nurse.

A Labour MP, Rob Marris, has tabled a private member's bill in the House of Commons for 11th September after MPs return from holiday. It's basically the same old bill that Lord Falconer tried to introduce in the Lords last year, and will be fraught with the same old dangers which have restrained our legislators wisely from going down the same route as Switzerland, Belgium, Holland and a handful of US states. Open the door to "assisting" others to die and you open a Pandora's box of unforeseen consequences. My local MP rightly pointed out that, in Britain, we lead the world in palliative care. Our response to the physical and emotional pain of terminal illness must be to show compassion by extending and developing this further - not by letting people die when they most need encouragement and assistance to live. As evidence from other countries has shown, a right to die would for many be a duty to die. I hope other MPs will also fiercely resist this Bill for that reason.

There is a better way.

Being present at someone's deathbed is always momentous, but usually it is a necessary and healing part of grieving. It can't be that, if one is contributing to the death. But if one is there accompanying the dying person and sharing in their struggle to depart, there is no guilt in the memory, only a sense of a compassionate task well completed.

Two of my great friends have died within the last ten days. They were both men of faith. One died in a hospice and the other died at home. The passing to new life is never easy. It wasn't for them either, but it was peaceful. I suppose the body is very attached to physical life. Matt Redman's song Bless the Lord, O my soul was being sung as one friend died and will be sung at the other friend's funeral:

"Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name.

And on that day
When my strength is failing
The end draws near
And my time has come
Still my soul will
Sing Your praise unending
Ten thousand years
And then forevermore
Forevermore."

Whether you have faith, as my friends had, or not, a "natural death" is better than an unnatural one. Hard, but free of the dangers and peculiar consequences which accompany the intentional shortening of life. 

The ex-archbishop and the disabled

George Carey was the last but one archbishop of Canterbury. He hit the headlines on Saturday by performing a volte-face on assisted suicide in an article in The Daily Mail. Some speculated that it was a deliberate attempt to steal the thunder from the present incumbent who was about to achieve a notable break-through in the matter of welcoming women bishops without splitting the Church of England. I don't subscribe to that view. I believe, though I've never met him, that Lord Carey is well-intentioned.

I understand that he can be stubborn. However I do wish he had listened what the disabled community is saying. Not Dead Yet sums it up simply.

"The key messages we want to get across are

• We are deeply concerned that a change in the law will lead to disabled people – and other vulnerable people, including older people - feeling under pressure to end their lives.
• The issue tells us a lot about public attitudes towards disabled people.
• Why is it that when people who are not disabled want to commit suicide, we try to talk them out of it, but when a disabled person wants to commit suicide, we focus on how we can make that possible?
• We believe that the campaign to legalise assisted suicide reinforces deep-seated beliefs that the lives of sick and disabled people are not worth as much as other people’s. That if you are disabled or terminally ill, it’s not worth being alive.
• Disabled people want help to live – not to die."

I was sufficiently disturbed to send him an email. I'm not surprised that I've had no reply, but I don't like to waste my efforts. So here, suitably edited, is what I wrote.

Dear Lord Carey

No doubt you are receiving a blitz of correspondence at the moment!  But I hope you will take time for this one.

I'm the youngest son of your predecessor but one at St Nick's in Durham, John Wenham.  Indeed I was born while he was vicar there.  Now I have Motor Neurone Disease (PLS variant).  I don't know how long I have to live, but know the sorts of things that lie ahead for me and my family.  I am now utterly dependent on my wife for my survival and for my day-to-day needs.  

I have consistently admired your doughty defence of the Christian values underpinning our society.  So I was sad to hear on the news last night of your intervention in the assisted suicide debate.  Clearly I don't know what Damascene experience you had to change your mind, whether it was meeting Tony Nicklinson or other experiences in your pastoral ministry.  When I met Tony Nicklinson for a morning, I came away immensely saddened that he was unwilling to recognise the love with which he was surrounded, both from his wife and daughters and from his carers.  His life was limited, but it had great value - as does all life.  Of course, neither he nor Paul Lamb would have been helped were Lord Falconer's bill to pass into statute, with its attempted safeguards.  That would come later if Lord Falconer's Commission on Assisted Dying saw its implied conclusion fulfilled: 'we do not consider that it would be acceptable to society at this point in time to recommend that a non-terminally ill person with significant physical impairment should be made eligible' (emphasis mine).  As a terminally ill person with significant physical impairment but with hopefully more than six months to live maybe I'll be next in line.  You cite Tony and Paul as evidence for necessary change.  Would you want to legislate also for cases such as theirs?

In your article you write movingly about our Lord's compassion for the suffering around him.  However I see him only offering healing and enhanced quality of life to those he met, never death.  Can it be the Church's role to advocate suicide instead of care to the end?  Isn't that what compassion really means - suffering alongside?  Would Jesus ever have abrogated the sixth commandment, which means, I understand, killing intentionally or through carelessness or negligence?  It seems to me that we are much more faithful to Jesus when we are involved in healing diseases and in palliative care.  

I don't doubt that Lord Falconer, the folk at Dignity in Dying and yourself are motivated by pity for those in pain, which is of course good. But there is also a strong agenda for personal autonomy, the right to choose.  As Terry Pratchett put it, 'My life, my death, my choice.'  Life, and death, is more than that though, isn't it?  Rights go with responsibilities.  If my insisting on my right endangers others in any way, then I must forego my right. 

I could write more about the ambiguities of the 'safeguards' in the bill, but I will simply urge you to hear the voice, in the debate, of those who see the dangers of opening this particular door for the disabled, the elderly and powerless vulnerable.  I hope you might consider, if not voting against the bill, abstaining and recommending an official royal commission to consider all the issues of end-of-life care, before the pressures of austerity and emotion push us into a position which we later come to regret.

Yours sincerely 

I was chatting on line to psychologist friend yesterday, and she said: "These things occur to me: 1. Many psychotherapeutic approaches theorise about the threat to our sense of self posed by death (a threat which exists regardless of our physical health state). It seems to me that this Bill is actually an unconscious response to this fear (dressed up as something very different!). However, in my experience, avoiding and bypassing fear will only increase it. This, I think, is the connection to 'the slippery slope'; 2. It is premised on something falsely believed to be absolute (6 months' prognosis); 3. It does not, as you point out, provide an understanding of the complexity of informed consent which is so dependent on many factors...social, societal, emotional, physical, intellectual etc...." Nicola's first point was new to me and rings true. Trying to avoid the fear of death by bypassing it will only reinforce it.

The Bill is debated on Friday. I guess that's the time for all the faithful to get praying and all the mobile to get protesting.

Finally something I heard yesterday about our approach to suffering: "Pain is inevitable; misery is optional." We don't have to choose misery and pessimism whilst facing the reality of pain. 

In the public eye

I really don't enjoy being in the public eye, but Jane and I were on Channel 5's evening news tonight: http://www.youtube.com/watch?v=227RAHqVDiA#t=12. We'd been interviewed about assisted suicide, which is in the UK news again because there's an appeal case before the Supreme Court basically seeking to legalise the practice for some. It's really a continuation of the Tony Nicklinson and Paul Lamb case, arguing for doctors killing an incapable terminally ill patient who wants to die because of "necessity".

The filming took about three hours - the clip they edited (well, I must say) played for less than two minutes. I hope it provided some evidence that not everyone with a "terminal condition" and very few disabled people want euthanasia legalised. I think Channel 5 got on to us because of an item we'd done for Yahoo News a couple of months ago which came on line last week. You can see Jane and me and the dogs here: Terminally ill man on why life is our greatest gift (Yahoo). (Jess has since been put down.)

There are many reasons why relaxing our laws to allow even a limited intentional taking of life is a bad idea. But they of course lack the emotional punch and sentimental appeal of horror stories. For myself I am always slightly suspicious of highly coloured accounts of personal suffering. They seem to me to be attempts to persuade by-passing the intellect. Of course the end of life is an emotional subject, and emotion should play its part, but if we abandon reasoned discussion we make ourselves prey to all kinds of prejudice and irrationality.

So what are my reasons for devoutly hoping that the nine Supreme Court judge reject this latest assault on the sanctity of life? Here are some notes.

Unintended consequences

I don't suppose the legislators who, acting from the best of motives, brought in the Abortion Law foresaw that it would become a charter for disposing of many thousands of babies with Down's Syndrome or a cleft palate.

Hard cases

Make bad laws. Our system combines case law and legislation. The place for considering ethical issues as hard and complex as this is Parliament, not the law courts.

Compassion?

Yes, I have compassion for people in pain and disabled and terminally ill. Tony Nicklinson said to me the difference between himself and me was that I could commit suicide if I wanted. It's not actually true. But compassion doesn't really mean killing someone. It means sticking with them through pain. It means relieving their symptoms and minimising their pain. It means good palliative care.

Prof Hawking's "pet" theory ("You would let your dog suffer") is one quarter right, three quarters wrong. We had Jess put down because her life was miserable, but also because she became doubly incontinent, was likely to incur costly vet's bills, was no longer much fun to have around. 3 of 4 reasons were to do with our discomfort, not hers.

Defence of the vulnerable

I'm not concerned for myself - although I don't look forward to the process of dying - but I am concerned for the vulnerable, the disabled who don't have a voice, the depressed, for the elderly who are at risk through dementia or frailty - for those who are increasingly regarded as a burden on their families, on society, on our nation's resources. It's those people our laws should protect. The court case seems to me to be about people who are far from vulnerable. They actually are strong-willed, if desperate, and well supported.

Hippocratic oath v necessity

As I understand it, one request in this case is for health professionals (such as doctors and carers) to be allowed to take someone's life or to assist in their suicide: so for example allowing my doctor to administer a lethal injection at my request. That opens the door to doctors ceasing to be healers and carers, and becoming dealers in death. That is one of the most valuable safeguards in the DPP's Guidelines on Prosecution in respect of Assisted Dying. I guess that's why the BMA is against a change in the law.

As events proved, there was no necessity for a doctor to end Tony Nicklinson's life. He could refuse treatment and ask for only symptom control and pain relief.

Discriminatory

All of us may refuse treatment: none of us may demand treatment. To allow one class - ie. paralysed - to demand would discriminate against others and set a precedent for any to demand "treatment" as we wished.

Justice and mercy

The present Suicide Act protects the absolute primacy of life - but allows room for mercy with the discretion of prosecutor, judge and jury. It has worked, and it isn't broken. Don't try and change it.

Fear

The disabled fear a change in the law. We feel at risk. We don't want to be endangered.

Many ageing people fear it. The majority of elder abuse takes place in the home or in care homes.

The campaign for euthanasia encourages fear. It feeds on our natural fear of pain, of dying and of the unknown. And it fuels that fear.

Fear is toxic to a healthy society.

Rights

Rights only come with responsibilities. My right to life, or to death, can't be isolated. If my demanding the right to die endangers the lives of others, then my responsibility to them trumps my choice.

'My life'

Actually life isn't our possession. We are part of life.

Religion

Everyone has a philosophy of life. Mine informs my view, just as anyone else's affects theirs. However, my objections are pragmatic. I'm concerned about the consequences of eroding the law for our society. I'm concerned about cheapening life - reducing it to a commodity. I'm concerned about protecting the vulnerable. I don't want our country to go the way of Belgium, where they're moving towards euthanising children, or of Holland when we could face 13,000 assisted suicides a year. I'm concerned that we never see euthanasia as an easy way to reduce our NHS and care costs.

The dissenting voice

Tucked away in the BBC's website report of today's campaigning report of assisted dying was a sentence which caught my eye. "However, one of the 11 commissioners, Reverend Canon Dr James Woodward, disagreed with the conclusion." I'd corresponded with him last year after my somewhat intemperate refusal to give evidence to the "commission", and apologised for tarring all the commission with the brush of prejudice at the outset. I've made no secret of my feelings about the whole exercise, but I have to say that Dr Woodward's statement in Appendix 3 of the lengthy report repays reading and for me is its redeeming conclusion. It can't have been easy to differ from the majority vote. 

He seems to me to have identified important issues, in particular breaking our society's taboo of discussion of death and dying, and having a broader debate about the kind of society we want to live in before thinking of changing any so fundamental law.

"As set out in the executive summary to this report, I do not feel able to put my name and support to the more specific recommendations that are made in chapters 11 and 12 of this report concerning the majority decision of the Commission that the present law could be changed to allow assisted dying in restricted circumstances. I support the coherence, rigour and quality of this work and hope that it will be read and used as a basis for further research, work and public debate. I regret that some have felt unable to contribute to the process of discussion, engagement and listening that has characterised the process. I wish to continue to work with my fellow Commission members to promote a deeper and wiser dialogue that moves away from polarised and entrenched positions on assisted dying that are incapable of listening to a wide range of issues and experience.

"In our work it has become clear that there are significant difficulties with the present law. My visit to Switzerland to learn something of the law and practice there raised many more questions about the way a culture views and values life, death and the freedom to choose. However this complex and contested area of human life cannot be dealt with through the law or medicine alone. We need to engage further with the social and ethical reflections on experiences of death and dying. The ethical debate is not over and it is the responsibility of all ‘sides’ of the debate to listen more carefully to the questions and concerns of one another.

"Further there are important theological questions about suffering, personhood and the value of the vulnerable that need to inform a more open conversation about death and dying in Britain today. I am particularly concerned about the adequacy of UK health and social care where dignity and compassion are values that are universally affirmed but often not part of the day to day practice of those who are tasked to care.

"In conclusion I believe that a broader societal debate is required before any attempt is made to move to a change in the law on assisted dying. As a society we need to bring all our collective wisdom to bear on these questions in an open and honest fashion. I understand that my particular view is a minority one and I both respect and admire my fellow Commissioners in their views and recommendations. I hope that the report will be read carefully — it is an important contribution to the debate."

I have written to thank him, and I very much hope his thoughtful voice will be listened to. Meanwhile, in response to my last post, Sally, a doctor friend of ours, could have begun part of the discussion with this powerful message: "Years ago, while working in a hospice, I admitted a patient who was in agony having had totally inadequate analgesia in a prior hospital. His wife was screaming at me to end his life, and he was rolling around in agony, but within in a short time he was sound asleep with good analgesia. He slept for about three days having been completely exhausted by being left in severe pain. He eventually woke up and subsequently had a good death. 

There is such a thing as a good death, but death is remote and almost taboo in contemporary society. We should not abdicate responsibility for striving for excellence in palliative and terminal care. We should not turn doctors into executioners. This is not a religious discussion. Civilised secular society has a role in addressing the concept of a good death which has no need whatsoever to involve killing."

Lord Falconer's Choice Illusion

So the Falconer "commission" has rebranded itself as a "panel of legal and medical experts" and confessed to being funded by and packed with assisted suicide supporters. In fact, the MP involved said, there was no one on the panel previously opposed to it. 

The fundamental issue seems to me to be a matter of choice, but it's not a matter of individuals choosing how they want to die. Rather it's a matter of us deciding what sort of society we want to live in.

This is the article I'd hoped would be published in a national paper, but wasn't in the event.

"Last year, in the midst of austerity and recession, the BBC’s ‘Children in Need’ raised a record £26,332,334 by the end of a single evening.  Today the self-styled Commission on Assisted Dying under the chairmanship of Lord Falconer, champion of the legalization of assisted suicide in England and Wales, will be presenting their conclusions.  Considering the ‘commission’ is funded by and predominantly made up of similarly-minded people, it’s not been hard to predict what some of those conclusions might have been.  They’ll be couched in reasonable and balanced terms no doubt, and they’ll hardly be novel.  However, on the principle that if you keep repeating something enough times, it will eventually be believed, they’ll serve their purpose. 

"One of the main themes, let me guess, will be that of freedom of choice.  The argument runs something like this: since 1961 suicide has ceased to be a crime.  Terminally ill people, for example with Motor Neurone Disease or Locked-in Syndrome, reach a point when they are unable to take their own lives.  Thus they are deprived of a civil right and unfairly discriminated against.  They, it is said, of all people might well want to end their lives - and the law as it stands means they can’t, because the same Suicide Act (amended 2009) goes on to state: “A person (“D”) commits an offence if (a) D does an act capable of encouraging or assisting the suicide or attempted suicide of another person, and (b) D’s act was intended to encourage or assist suicide or an attempt at suicide”.  It does also leave the jury discretion to convict or not, and only permits proceedings “by or with the consent of the Director of Public Prosecutions” - which explains the minimal convictions under the Act in 50 years.

"If someone like myself should wish to leave our disease behind, why should we not say so and why should we not be assisted, without the fear of our assistants’ facing prosecution?  Surely it’s my life and my choice? 

"In discussions people have said to me, “Suicide’s been legalized.  That means it’s my right to take my life.”  The wording of the Act does not exactly express that meaning: “The rule of law whereby it is a criminal act for a person to commit suicide is hereby abrogated.”  To say that the state will not regard a suicidal person, whether successful or unsuccessful, as a criminal, is not the same as saying that the state sanctions or encourages suicide.  In fact the wording of the 2009 amendment was widened in order to cover internet sites promoting suicide, implying that the state’s inclination is to discourage suicide.  Mr Justice Baker’s judgement in the recent case of patient ‘M’ summed the principle up: “The factor which does carry substantial weight, in my judgement, is the preservation of life. Although not an absolute rule, the law regards the preservation of life as a fundamental principle.”

"The question is whether personal choice can trump the preservation of life.  It is, of course, not true that we have unfettered freedom of choice.  For example, we are not free to drive on the right or without a seat belt, because the state does not want us to kill either ourselves or each other.  Similarly, where we may smoke is restricted.  Even what we may say and write is limited.  There are good reasons for such things, but the point is choice is not an inherent right.  Autonomy, the oft-touted synonym for choice, literally means “having one’s own laws”.  That is incompatible with being part of a larger society.  Therein lies the flaw in arguing for legislation which allows for a variety of practice in the taking of life, or assisting to die.  Once you say that it’s possible to decide your own personal laws in matters of life and death you have no fundamental ground to say a particular action is unacceptable.  It will all depend on circumstance and motive – and that is shifting sand.  Even ‘compassion’ is an elusive and subjective motive.  You may set apparently water-tight perameters, but they also will shift.

"To abandon the preservation of life as a fundamental principle of our society’s laws, in the name of personal choice, would be to retreat from centuries of hard-won progress.  It was, after all, only in 1969 that Parliament voted to abolish the state taking life.  During the debate on the abolition of hanging, Duncan Sandys led the opposition to the vote, arguing that “We have no right to assume that the firmly held views of the overwhelming majority of the British people are unworthy and misguided.”  His view was shared neither by the Commons nor the Lords, and so even the life of the murderer was protected.  (It will be interesting to see whether Sandys’ contention about public opinion, which seems predominantly to favour euthanasia, will be echoed by the ‘commission’.)

"So what will society say to me when I get near the end of my MND – if it’s not to allow someone to top me when I’ve had enough?  I hope it will say, “We will see you through this.  We will give you the best quality of life that’s possible.  We will provide all the palliative care that you need, including supporting your carers.  We will do everything possible to ease your symptoms and to control your pain.”  And I would say, “Please keep me comfortable.  If the pain relief should shorten my life by hours or days, that’s all right.  You’re only doing your job.  And when I should die, just let me be.” 

"Is it a Utopian ideal?  In fact it’s the legal situation now.  But aren’t there doctors out there who’ll betray one’s trust?  Aren’t there trusts and commissioning consortia who will try to trim their care costs?  There are horror stories of the neglect of the elderly in hospitals, after all.  (It’s worth pondering whether one factor beneath the horror stories is the progressive devaluing of the dependent person?)  Well, there are risks, but the society which firmly holds the preservation of life as a fundamental principle will be on the lookout for such breaches and, most importantly, put its resources where its principle is.  And the risks are small beside the risk of abandoning the principle that life is precious above all else. 

"‘Children in Need’ projected on our TV screens the courage and beauty of disabled, dependent and often dying children.  It showed us the incredible endurance and compassion of those who care for them.  There can be no question as to their worth and of the value of enhancing or at least ameliorating their lives.  We know it's right.  The society which cherishes life, even at its most tenuous, is far preferable to one which admits the principle that some lives are disposable.  'Children in Need' or the 'Commission'?  I know which vision I prefer."

from Children in Need website

I know the so-called experts are not calling for euthanasia, but only for assisted suicide of mentally competent adults, but my point is that once the preservation of life is breached as a foundational principle of law and life-taking is permitted a Rubicon will have been crossed, and we shouldn't be fooled that it's the end of the road for the advocates of euthanasia.