Thinking more about killing oneself (further thoughts on the Terminally Ill Adults [End of Life] Bill)

But it's not a matter of killing only oneself. "No man is an island entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as any manner of thy friends or of thine own were; any man’s death diminishes me, because I am involved in mankind" (John Donne, former MP, in his most famous sermon). 

The euthanasia juggernaut has been gathering momentum through the western world. In this country it appeared as the Voluntary Euthanasia Society, to be later rebranded as the richly endowed Dignity in Dying. It’s been beavering away for decades, with 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 resisted 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 impassioned debate by a narrow majority eventually given way to the pressure.

A fortnight ago I had my annual check-up at the MND Clinic and subsequently received the GP letter. 
“Date seen 02/06/2025…  Diagnosis (this visit) Primary Lateral Sclerosis…  Symptom onset 2000”.

I well remember the year 2000, my voice deteriorating, my balance starting to fail me, resulting finally a year later in the consultant’s verdict, “You have a Motor Neurone Disorder.” Well, I knew what that meant as at the time Diane Pretty, backed and publicised by the Voluntary Euthanasia Society, was fighting through the courts as far as the European Court of Human Rights for the right for her husband to take her to commit suicide in Switzerland in the Dignitas “clinic”. It was frightening time to receive an MND diagnosis. It still is, as the normal progression of the conditions that come under that label is both swift and relentless. However “in the majority of cases, death with MND is peaceful and dignified” (MNDA). 


At that time I could have been depressed; I could have known how much care I would need, how much it might eat into our savings; I could have feared the physical and emotional toll it would take on my wife; I could have been desperate about the future. Certainly I was vulnerable. Fortunately I was of an optimistic nature and had plenty of reasons for living. But it could easily have been otherwise. I might well have panicked and opted for a doctor to help me die, if the law debated in the Commons  was in effect. Then I wouldn’t have seen two sons getting married nor grandchildren being born and growing up. I would have missed out on twenty years of an increasingly restricted but paradoxically fulfilled life. Of course you might argue that I’m ‘lucky’ to have, as became clear over the years, my exceptionally rare and slow form of MND, but I wasn’t to know that, as indeed none of us do despite our doctors’ best predictions. Indeed I am lucky to be alive.

However it was my experience that brought me face to face with the fact of my own mortality and the issue of assisted dying. There seemed to me to be four main drivers. First, the desire for autonomy; second, the insistence of independence; third, a sort of compassion, and fourth, finance. There were two further factors: fear of death and fear of being “a burden”. 

It’s a modern western concept that humans are by nature autonomous beings, meaning that choice is an inalienable right. I once co-wrote a book with the title, I Choose Everything, based on a quote of Therèse of Lisieux. It was from a childhood incident, but it did not mean she reserved the right for total autonomy, but rather the opposite. As she later wrote, “I fear only one thing: to keep my own will; so take it, for ‘I choose all!’ that you (God) will!” Absolute choice is not a virtue. Choosing where to drive your car is not a virtue as it can endanger other road users. There are many limitations on freedom or taboos that protect others in a society. Taking someone’s life directly or indirectly is a universal one. Individuals submitting to a higher authority holds a community and a nation together.

Another related modern heresy is the ideal of independence. How utterly fatuous this is! None of us is born independent. We’re born relational. All of our lives we are interdependent. Being cared for is not to be lacking in dignity. Being 100% dependent does not deprive someone of their human dignity. Even the most disabled person is a human being made in the image of God. It is a dreadful thing when a society regards the disabled, the dependent, the different, the mentally deficient and the declining as inferior and potentially disposable. Of course the advocates of the Bill would vehemently deny that they or it implied any such thing. Yet the history of the twentieth century bears witness to how subtly a society can be seduced by the pernicious philosophy of eugenics. 

It is a modern paradox that medical advances have contributed to the illusion that death is to be feared. Yes, death has always been the last enemy and, yes, we hope it will be peaceful. But we shall all die. Contrary to received wisdom, the compassionate response to that fact of life is not to “put someone out of their misery”; compassion (literally suffering with) means to be with them in their suffering. This is what good palliative care provides, making the end of life dignified, worth living and even pain free. 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?”

Of course palliative care costs more than facilitating patients to take their own lives. According to the Daily Mail “Legalising assisted dying would save the taxpayer £10million in NHS costs in its first year, rising to £60million after a decade, according to grim new estimates published by the government.” The estimates are indeed grim, but also attractive to politicians straining to balance the national budget. Yet they raise the fundamental question: do we want to live in a society which values money over life? 

Which is the most fundamental of all the issues: the sanctity of life has been a core principle central to all the Abrahamic faiths, which undergird our culture and way of life. In the words of Job on hearing of the death of all his children, “The Lord gave and the Lord has taken away.” The start and end of life are not ours to determine. We lack the wisdom of God.

Apparently the majority of our parliamentarians have decided to place that prerogative into the hands of suggestible and distinctly fallible humans beings. However the juggernaut has an insatiable appetite. We or our children shall, I fear, reap the whirlwind. 

Ian Birrell in his clearly argued opinion piece in the i newspaper puts it well: "Westminster seems far more focused on helping people to die instead of delivering the chance to ensure every British citizen can live their fullest life from birth to death."

 

[Blog based on my article in Seen and Unseen, where Graham Tomlin's article is worth reading: "What will stop the culture of death that libertarian Britain has embraced?"]  

"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)

What's wrong with the Falconer Bill?

On Sunday I was asked for my views on ex-archbishops endangering the lives of disabled and ill people. Well, it was the World Cup and I needed a day off; so I promised something on Monday. (Sorry - missed my deadline!) And this, I hope, will be it. Actually rather than knocking two well-meaning old codgers, I think I’ll write about about Lord Falconer’s deceptively innocuous-sounding bill on “assisted dying” whose second reading takes place in the House of Lords on Friday.

It’s summarised in Parliamentary business papers as “A Bill To enable competent adults who are terminally ill to be provided at their request with specified assistance to end their own life; and for connected purposes.” 

A commentator summarised its contents like this: “His bill would make it legal for doctors to help mentally competent adults with less than six months to live to kill themselves. Two doctors would need to agree that a patient met the criteria and the option would not be open to minors, people without mental capacity or those who are not terminally ill.

“The final step would involve a doctor (or nurse) hand-delivering lethal drugs to the patient at a time and place of their choosing and staying with them while they took the drugs and until they were dead.”

I’m indebted also to Peter Saunders for the following three headings. He is not to blame for the comments thereafter, which are mine.

It’s unnecessary

The law

The present Suicide Act makes it illegal to aid, abet, counsel or procure the suicide of another, or an attempt by another to commit suicide, with a maximum penalty of no more than 14 years in gaol. The law is hedged round with safeguards such as prosecutions being carried out only by the Director of Public Prosecutions (within compassionate guidelines) and all the processes of jury trial and appeals. The law as it stands enshrines absolutely the protection of life, but allows the leeway of public interest and compassion, in other words, Portia’s principle of justice and mercy. The fact that in the 53 years since the Suicide Act was passed there has been no contentious court case is evidence that it’s not a bad piece of legislation.

End of life care

An aunt-sally propagated by the assisted-suicide lobby is that at present many doctors in fact covertly kill their terminally ill patients. I think they refer to the double effect of ceasing treatment or administering drugs with the intention of mitigating symptoms and alleviating pain. There is a category difference between that intervention and what the bill proposes (from understandable motives). A doctor friend of mine commented yesterday:

“Desmond Tutu, as quoted..., is completely misunderstanding the issue of assisted dying and my worry is that the bill will be passed based on these misunderstandings.

“Scenario 1) A person is terminally ill. It is their time to die and further treatment is futile and unnecessarily prolongs suffering (e.g. Repeated courses of chemotherapy, or the intensive care treatment of Nelson Mandela described in this article). We don't need a change in law for this. We need sensible, compassionate care.

“Scenario 2) A person is terminally ill and has a 'settled wish' to die. Two doctors therefore agree to end that persons life by way of administering drugs. This is what the bill proposes.” 

The accusation that palliative care specialists intend to kill their patients rather than ease their last hours has to my mind a hint of malice about it. 

Hippocratic oath v necessity

Nursing = caring

As I understand it, the aim of the bill 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, preventing health professionals helping someone taking their own life. I guess that's why the BMA is against a change in the law. As events proved, in Tony Nicklinson’s case for example, there was no necessity for a doctor to end his life. He could refuse treatment and ask for only symptom control and pain relief.

It’s unsafe

The bill itself

There are many aspects of the bill itself which are glaringly unsafe. For example the six month cut-off point: as any honest doctor will admit, such a precise prognosis is notoriously hard to make - witness the case of the “Lockerbie bomber” Al Megrahi being released having been given three months to live by the country’s leading cancer specialist, Professor Karol Sikora, and enjoying another three years of life back home. I know a number of people, such as the late Alison Davis, who are profoundly grateful that an early exit was not open to them, since they went on to live many more years of fulfilled life. For example the assessment of mental competence and settled desire simply by two doctors. There is no specifying of who the doctors should be, what their qualifications should be (for example psychiatrists). Presumably they would be doctors in favour of assisting death, and the prospect presents itself of the situation emerging in Holland of mobile euthanasia clinics with a couple of doctors ready to sign the necessary papers on board. For example, the requirement of informed consent. Does that mean being given a leaflet about local hospices, or palliative care packages? In my experience there’s no real alternative to visiting and staying in a place where you can experience care from the real experts.

Its implications

The proponents of assisted suicide often pillory the idea of a “slippery slope”. But experience shows it is unwise to do so. The Benelux countries and Switzerland (the only European nations with voluntary euthanasia) have witnessed a steady relaxation of the safeguards originally in place there. In the two US states where assisted suicide exists the number has steadily increased. Times of austerity (like the Depression of the 1930s) have seen a rise in euthanasia - see “Action T4” in Wikipedia (http://en.wikipedia.org/wiki/Action_T4). Disturbingly one can hear hints of this in Desmond Tutu’s “But why is a life that is ending being prolonged? Why is money being spent in this way? It could be better spent on a mother giving birth to a baby, or an organ transplant needed by a young person. Money should be spent on those that are at the beginning or in full flow of their life.”

Peter Saunders’ comment is pertinent. “The right to die can so easily become the duty to die and the generation that has killed its children through abortion could very easily become that which is killed by its children through euthanasia and assisted suicide. Add in economic crisis, debt, cuts in health and welfare and the argument gains force by playing on popular prejudice against those perceived to be a drain on families and the state.”

Lord Carey cited cases of permanently disabled people to explain his change of mind. Yet they of course are not covered by this bill. One see how inevitably the argument will be, “Why not these people?” “And why not teenagers younger than 18?” “Why not those with a longer-term terminal illness? Those with a chronic painful condition?” And so euthanasia is upon us. Disabled campaigners such as Tanni Grey-Thompson and Baroness Jane Campbell are clear in warning of this danger.

A further real danger is that of the disabled and chronically experiencing explicit or implicit or self-generated pressure to ask for euthanasia. Personally I think the last is the most likely, as the disabled, chronically ill and elderly seek to alleviate the expense and anxiety of those who care for them, whether family or state. And it would also be naïve to underestimate the amount of elder abuse in this country.

It’s unethical

Compassion

Stephen Hawking who like me has a rare form of MND not long ago propounded what I call the “pet theory”. It goes something like this: we have our pets put down when they’re suffering. Surely people deserve better than that? However it’s also true that we have them put down because they become incontinent, because their vet bills rocket and because, to be blunt, they’re no longer afford us pleasure. In other words, it’s more about us than the pet.

Compassion, it seems, is often confused with pity. The true and original meaning of compassion is to suffer with, to stay with someone in their pain and darkness. It doesn’t mean to put them out of their misery; it doesn’t mean concurring that their life has lost its value; it doesn’t mean euthanising them. That’s a cheap imitation of compassion. True compassion is costly emotionally and often financially.

Investment in universal best palliative care is the true expression of compassion, not the offer of a cocktail of barbiturates, which is a perversion of therapy. 

Defence of the vulnerable

"You are not a burden."

Another mark of a civilised society is its attitude to the weak and vulnerable. Eugenics gained traction in the early 20th century, wanting to produce healthy strong and racially pure men and women. The weak went to the wall. 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, 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. Ironically Lord Falconer’s bill seems to me to be about people who are far from vulnerable. It’s about determined people concerned to maintain control over their lives come what may.

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. You can’t have a community, you can’t have a society where each person insists on his or her rights. Rights, in my view, are not possessions. They are what we afford each other. The danger of this legislation is that it begins to remove the right to life of the many to accommodate the right to choose of the few.

Value of life

Neither is life a possession. Life is bigger than us. We are a part of life. We are granted a share in the adventure which is life. In financially straitened times, such as we are told we are now in, there is a real test on the horizon: what do we value more - money, or life? That will be the measure of our society. I know what I would prioritise.

The value of life was long ago encapsulated in a simple principle, “You shall not murder”, a word which includes intentional killing, and also from carelessness or negligence. In other words life, of whatever perceived “quality”, is precious and to be protected.

Lord Falconer’s bill, well intentioned though it may be, is in my view unsafe and opens the way to consequences which, though denied, are entirely logical extensions of the breach in this principle.