Currently, as I’m sure you know, assisted dying is banned in all forms throughout the British Isles and carries a potential maximum prison sentence of 14 years. Repeated attempts have been made to legalise assisted suicide, without success, but this week the Isle of Man, a self governing UK Crown dependency, has come a step closer to becoming the first part of our islands to legalise it for terminally ill and mentally competent people. And Scotland is hard on its heels with the formal introduction of a new bill to their parliament on 27 March.
Assisted Dying Bill
A first! … maybe …
Well, after all these years of talking and debating and campaigning it has finally happened: the Isle of Man has just become the first place in the UK to make Assisted Dying legal.
However, it’s by no means a done deal yet. Right now it just means the Manx parliament has agreed to pass this law allowing terminally ill adults with legal capacity, who have lived on the island for a minimum of five years, are registered with an Isle of Man GP, and who now have a life expectancy of 12 months or less, to end their lives, subject to the approval of two independent doctors.
But that’s not the end of the matter by any means. Right now, it’s essentially theoretical. Before this legislation can become operational, it has first to go for Royal assent. If that’s granted, it could become law later this year and an assisted dying service could be in place by 2027 – both these steps will involve a lot of work and discussion and close scrutiny. And there are no foregone conclusions.
Oh, and there’s another complication: three quarters of doctors who responded to an Isle of Man Medical Society survey in 2023 said they were opposed to assisted dying, and a third would consider leaving the island if the legislation were introduced. Now that feels to me like quite an obstacle.
And now, in the same week, we hear that the proposed bill for England and Wales, which has met with enormous problems since it passed the first stage in the Commons last year, has been kicked into the long grass after its Labour sponsor, Kim Leadbeater, proposed delaying it for two years until after the next election. There is a distinct possibility it would be dropped altogether by a different government.
I’m sure, you like me, have heard plenty of Joe/Jessie Bloggs stating their absolutely views with supreme confidence, but actually finding an ethical, safe, workable method of implementing change, and enshrining it in law, is fraught with problems. Not surprisingly really; after all, life itself is sacred, and feelings run high on both sides of the arguments.
The clock is ticking …
Big week this week. Tomorrow (29 November) Westminster Parliament will debate and vote on the Assisted Dying Bill in England and Wales – or more properly The Terminally Ill Adults (End of Life) Bill.
NB. Scotland has formulated and debated its own version of the legislation for assisted dying which is currently being examined minutely by Holyrood’s Health Committee, although they will be unable to proceed to formally legalising assisted dying without authority from Westminster.
It’s an emotive and conflicting topic, and I can see arguments for both sides. But it’s by no means as straightforward as some suggest. Of course, no one wants people to die horrible painful undignified deaths, but is medically assisted dying the answer?
Proponents of the proposed new bill claim that safeguards will be stringent; in essence:
- Patients must be over 18, registered with a GP for at least 12 mths
- 2 independent doctors must be involved in the decision
- They must ensure there is no coersion or pressure, the decision is voluntary and informed and a settled wish, and the patient is fully aware of other options, eg palliative care, and that they can change their mind at any time
- An expert should assess mental capacity
- The patient must declare their wishes for death on two separate occasions, witnessed and signed
- A high court judge must approve the case
- The Chief Medical Officer must monitor and report on how legislation works in practice.
Stringent …? Ahem. That’s just how such bills were introduced in countries like Netherlands, Canada, Belgium. Within a few short years the safeguards had already been eroded. Scary statistics and reports show a huge escalation in numbers dying this way, and they include couples choosing to die together, young people with autism or anorexia, people who are depressed or lonely but otherwise well, young children. Indeed in the Netherlands plans are in process to allow the healthy elderly (>75) to be helped to die if they undergo 6 months of counselling.
And there’s another stumbling block which hasn’t had much airing. Human rights barristers and legal scholars have warned that slippage is not just likely but inevitable, because to deny other groups of people access to assisted dying would be seen to contravene the European Convention on Human Rights, and be discriminatory. So initial qualifying conditions are sure to expand here as they have done elsewhere regardless of the care taken with framing the law.
Even if all the intentions are really sincere, there are issues too with the criteria themselves. We all know medical prognoses can be wildly wrong. Who can really confidently predict death will occur within six months? Senior practitioners and experts in palliative care agree, it’s impossible until very much closer to the end than ‘months’, and research has verified this fact. Then, who is going to train doctors in this additional work? How will the medical world deal with doctors whose consciences don’t allow them to be party to this service, even referring patients on? Are there going to be enough high court judges available and willing to add this task to their existing load? Prominent legal experts have already questioned the role of the judiciary in what is essentially a medical matter.
Then there’s the whole question of viable alternatives. Hospice care is an amazing service and certainly one I personally support wholeheartedly. It focuses on living well right to the end. It’s sensitive to all aspects of a person’s well being – physical, emotional, spiritual, psychological. It includes caring for the whole family. What’s more, it is already assisting people to die humanely and compassionately. But – and it’s a colossal but – we all know that palliative care is woefully underfunded and its availability seriously limited. Only a small fraction of its total cost is paid for by the Government. In order to survive at all it must rely heavily on fundraising, and the escalating cost of living crisis has meant the generous public now have less to donate. As a consequence of this proposed new legislation, it’s feared governmental support will be reduced further if hospices deline to sign up to ending lives in line with the new bill.
Another avenue that’s under-utilised is that of Advance Directives or Living Wills, legally binding documents that state a person’s wishes for the future in certain circumstances or conditions where they might not be able to convey those choices for themselves. Withdrawing or withholding treatment is legally permissible already. However, only a small proportion of the population fill out such an expression of their wishes.
Should we then return to the pre-Shipman era where doctors could give sufficient opiates to end pain and distress, even if the double effect was to hasten death? This was generally regarded as a kind and compassionate response to intractable suffering before suspicion clouded the supposed intentions of healthcare providers.
This is by no means an exhaustive discussion of the issues, but hopefully underlines the need for huge care in deciding on this matter while there is still time. As one doctor put it: It’s a dangerous trajectory from which there can be no return.
Dare I?!
I’m not sure whether I dare raise this topic again on this forum, but here we are facing yet another parliamentary debate on this ultra-sensitive topic. Labour MP * Kim Leadbeater‘s Private Members’ Bill on assisted dying was tabled yesterday, on October 16, with a free vote scheduled for 29 November. There’ll be much debate and argy-bargy between now and then, so I’m getting my tuppence worth in at the outset.
Over the past sixteen years, since publishing Right to Die, in 2008, I’ve periodically revisited this topic on my blog, often with an apology, as regular visitors will know. Why? Because we still have no law allowing it in this country, but we still have people facing appalling deaths, and we still have campaigners fighting for the right to choose how we die, and we still have vociferous opponents to change.
So where are we with it today in 2024? Well, the country remains deeply divided.
The most important factors that influence opinion seem to be
- sanctity of life
- reducing suffering
- ensuring dignity
- respecting autonomy
- prognostic uncertainty
- risk to the vulnerable
- risk of pressure or sense of obligation
- inadequate palliative care
- devaluing of disability
- the slippery slope
- dearth of options
In general, polls asking people what they think appear to suggest widespread support for a change in the law, but the more they delve into the practicalities and difficulties of how it would actually work, the less enthusiastic and more ambivalent they seem to become. And who can blame them? The whole business is fraught with peril. The questions go round and round. Ask yourself …
Would I want to see your most beloved endure relentless suffering?
Would I be willing to accompany them to Switzerland for a dignified exit?
Would I personally be willing to administer a lethal something to a fellow human being?
If I were 96 and admitted to an overcrowded hospital with insufficient care to go round, would I trust legally-empowered doctors who are complete strangers to me, not to solve one problem with a swift and painless needle?
Do I believe all medical personnel to be motivated entirely by empathy and the Hippocratic oath? We can’t forget Harold Shipman and Beverley Allitt that easily, can we?
Besides all that, available care is already limited and unfair. We all know our NHS is strained to breaking point. We’re already extra-cautious about going to our GP or hospital lest we overburden the system – that was drummed into us during the pandemic, wasn’t it? Waiting lists are obscenely long; patients die waiting. We’d all choose an easy death but palliative care is simply not available for all. Health bodies already make hard decisions about who may or may not get life-saving or life-enhancing medication. Do you trust our policy makers to put the sanctity of human life ahead of politics and economics when voting? Is it even possible to do so?
And we can’t ignore the fear factor. If we look elsewhere to those countries that have introduced assisted dying initially with clear criteria to control it, in every case there has been slippage over the years to accommodate circumstances no one ever intended initially – things like diabetes, mental illness, depression, arthritis, eating disorders. It might begin with those patients who are terminally ill and a whisker away from death, but experience shows that hitherto it certainly doesn’t end there.
It’s a fraught issue. There are powerful and compelling arguments on both sides. Emotions run high. No one wants to stand by while patients die in unrelenting pain and suffering. Very few people are gung ho about reducing the surplus population. I’m sure the legislators are working with the best of intentions, but precedents have shown that good intentions are not always sufficient safeguard against the erosion of boundaries set to protect the vunerable and disadvantaged and unsupported. We have to heed these warning signs.
Whether or not this current proposed bill leads to a change in the law, the issue does need to be thoroughly considered. The wishes of those facing horrible deaths must be heard and heeded. We must do something to deal with an intolerable situation. Pivotal in this whole matter, it seems to me, is the exact wording of any new legislation, the boundaries set about what may and may not be permissible. And once it has been drafted, ensuring any law that is enforced is interpreted correctly and adhered to. And that will require super-human skill and vigilance.
Disability and Assisted Dying
The topic of a good death just won’t go away, will it?! But this week there’s tangible progress to report.
But of course, as ever, these attempts to change long established laws in such a sensitive and nuanced area, prompt strong opposition from some parts of the medical profession, disability and human rights groups, and religious communities, with concerns that it might put pressure on vulnerable people to end their lives for fear of being a financial, emotional, or care burden on others, compromise the ethical standards of the medical profession, and create fear and mistrust among the patient population.
So, I was fascinated by a BBC documentary, Better off Dead?, which devoted an hour to the topic on Tuesday this week (14 May, 9pm). It was written and presented by actor and disability rights activist, Liz Carr, who is herself disabled and in a wheelchair. A recent poll found that 73% of Britons support doctor-assisted suicide for the terminally ill, but Liz and many other disabled people fear their lives will be put at risk if it is legalised. She says:
Too many disabled people will have had the experience of someone, often a complete stranger, telling them, ‘if I was like you, I’d rather be dead’.
But she says with a grin, disabled people are the toughest people out there! To which her friend adds, ‘Cockroaches! Evolved for survival!’ And Liz certainly comes across as a feisty, articulate, and knowledgeable campaigner.
The pandemic cast a bright light on the inequalities in care, and the practice of ‘Do Not Resuscitate’ orders being placed on the medical notes of older or disabled patients, without their consent, also implies a low value is attributed to their lives. This documentary challenges the assumptions behind these actions, and shines a light on the many grey areas in this often one-sided debate. Seen through the eyes of those being discriminated against, it packs a hard punch.
In the course of making the programme, Liz also travelled to Canada to explore the repercussions of some of the most permissive euthanasia laws in the world, laws which include people who are disabled, not just the terminally ill. For me, seeing the illustrated information pack for children explaining what MAID (Medical Assistance in Dying) means in simple language, chilled the blood.
A palliative care specialist drew attention to the paucity of such care, and her cry to protect the vulnerable struck a particularly deep cord when we had this vivid image of assorted people with disabilities in front of us. Why don’t we hear more about the serious underfunding of this service, I wonder? Is this where we should be devoting our energies?
Even if there are to be changes in the UK law – which seems highly probable, they won’t be 100% safe. They can’t be. But the more practical question is: How safe is acceptable?
Back to my pile of books on the subject which I’m ploughing through systematically. But now with this niggle about disabled people’s perspective a much bigger alarm call.
The pace of change
Thirty years ago, when I first started writing novels set in the world of medical ethics, I had an abiding horror of someone else writing on the same theme and publishing before me, or real life medicine coming up with something new that rendered my plotting obsolete – or that made it look as if I’d copied from real life, or the topic simply becoming old hat in some way. In reality the reverse has happened: real life has occasionally mimicked my fiction. And not one of the eleven novels I’ve published has actually gone out of date. Such is the enduring nature of ethical issues.
This week I’ve been following up an ongoing story in the Isle of Man – a self-governing UK dependency in the Irish Sea between Great Britain and Ireland – where a Bill is going through Parliament designed to legalise assisted dying. The first reading of the Bill was approved by 22 to 2 votes. In the second reading at the end of October, 17 members voted for, 7 against. It now faces three more stages: a clause stage – where each clause is independently scrutinised; a potential committee stage, and a third reading. If it survives these obstacles it goes to the Legislative Council where it could be signed into law and could be available as early as 2025. If it is, the island will be the closest place to mainland Britain where this service is available, although it should be noted, tourists will not be able to take advantage of it.
It’s fifteen years now since my novel Right to Die was published – hard to believe! But the issues remain the same; the complexities and caveats are still confounding the process of actually enshrining a practical workable solution in legal language; patients and families are still facing horrendous choices. Could it be that an island 426 times smaller than the UK will blaze a trail for its neighbours?
Whatever, the wheels of law turn oh so slowly. I shall not be short of potential material in my lifetime!
The Assisted Dying Bill … yet again
Patience is the name of the game when it comes to legalising assisted dying, it seems. But this week there’s been a significant breakthrough.
Back in the noughties, when I was writing my novel, Right to Die, about a young man who contracts Motor Neurone Disease and contemplates ending his own life, I lived in daily dread that something would happen to steal my thunder, and the bottom would fall out of the marketing strategy, before it hit the bookshelves. That was 13 years ago! At that time, Lord Joel Joffe was expending his energy trying to get a bill drafted to ease the lot of those facing intolerable suffering at the end of their lives. I had the privilege of meeting him in London, at the House of Lords, to talk about our shared interests, and he very kindly endorsed my book. Sadly his bill didn’t get through, and he died disappointed by this.
In Scotland, MSP Margot MacDonald fought valiantly for an easement of terminal pain and suffering, her case the more powerful because she herself was suffering with Parkinson’s Disease. I listened to her too on a number of occasions, and was moved by the passion behind her case. She too died without seeing progress on this front.
These are but two of the many notable figures who have kept the issue alive, nibbling away at the edges of the arguments about the horror for some people who face a slow undignified and painful death, and who would welcome the security of knowing that, if things became intolerable, they had a way out that wouldn’t incur penalties for those left behind. Experience in other countries (the USA and Netherlands especially) shows that a large proportion of those who have an advanced directive authorising assisted death, never actually avail themselves of the service. It’s enough to know it’s there if needed.
Over the years, we’ve all heard and seen patients and families sharing their plight with the media, publicly throwing their dwindling energies and resources into fighting for compassion and understanding. We’ve listened to politicians, clergymen, philosophers, religious people, those with disabilities, putting their perspectives into the melting pot. For and against. Passionate, angry, distressed, vengeful, dogged. And gradually, over time, we’ve seen a softening of attitudes taking place.
As far as the general public are concerned, opinion has swung in favour of a change in the law; for some kind of easement of intolerable suffering. Politicians have gradually – almost imperceptibly – become less scared of picking up this hot potato.
But one group of people who’ve remained reluctant to back assisted dying has been the doctors. Small wonder: they’re the ones who will be on the frontline, actually taking those active steps to supply the fatal drugs, or even administer them, to help eligible patients end their lives, should this become legally permissible in this country. And, as we all know, doctors are in the business of caring not killing.
However, this week, the British Medical Association has dropped its opposition to assisted dying and adopted a neutral stance. Not in favour, please note. Neutral. And indeed, the vote hinged on a hairsbreadth! 49% of the representative body voted in favour of a move to a position of neutrality; 48% were opposed to such a move. They, in turn, were acting on behalf of their members: 40% of whom were in support of a change in the law to allow assisted dying; 33 opposed to it; 21% thought the union should be neutral on the subject. A position of neutrality gives scope for all ranges of opinion. It’s a major step.
And a timely one it seems. Because next month a new version of the Assisted Dying Bill is due to be put to the House of Lords for a second reading, this time promoted by Baroness Meacher – whom I have NOT met! It would seem to have a stronger chance of success this time because of the BMA shift. Time will tell, but I’ll be watching this space closely and thinking of all those who have paved the way but died disappointed.
End of life planning
For personal reasons, time running out, end of life, setting one’s house in order, leaving clear instructions, tidying up loose ends … they’re all much in my thoughts this week. So an obituary jumped out and hit me between the eyes.
Marieke Vervoort. Belgian gold medal winner at the London 2012 Paralympic Games …
… ran the strap line. Followed by …
… who ended her life by euthanasia
Oh wow! Never seen it spelled out like this before. So why did this celebrity decide to end her life at the tender age of 40? (NB. A few details in the official obituary I have no means of verifying, so I can only repeat them on trust.)
Marieke Vervoort was born in Belgium, became a sporty child, and had ambitions to be a PE teacher. However, at the age of 14 she began to suffer repeated infections in her Achilles tendon. The eventual diagnosis? Reflex sympathetic dystrophy, a progressive disease which gradually crept up her body. The prognosis? Grim: tetraplegia. And it came with epileptic seizures and terrible pain; so bad indeed that she was often unable to sleep for more than 10 minutes a night. Imagine the toll of that little lot.
In spite of all this, Marieke fought back and has been acclaimed around the world. The list of her accomplishments is mind-blowing:
2006 – paratriathlon world champion
2007 – paratriathlon world champion
After this her condition worsened and she moved into wheelchair racing.
2012 – won gold medal in 100m sprint and silver in 200m at London Paralympics
2013 – set new European record in 200m and world records in 400m and 800m in Belgium
2013 – suffered a serious shoulder injury while racing, and was told by a doctor she would never return to her previous level. This made her even more determined to succeed.
2014 – won 200m and 1500m and 800m in Switzerland, setting three new world records
2014 – spilt boiling water on her legs after an epileptic fit while cooking – necessitating 4 months in hospital
2015 – won 100, 200 and 400m titles at the world championships in Doha
2016 – won silver medal in the 400m at the Rio Olympics after being violently sick for 30 hours and on a rehydration drip
2016 – won bronze in the 100m at the same games in spite of running a fever with an kidney infection at the time
2017 – paralysis reached her chest, vision deteriorated, finger function declined. She took up sky-diving in a vertical wind tunnel
September 2019 – fulfilled her wish to be driven around the Zolder race circuit in a Lamborghini Huracan
22 October 2019 – died by euthanasia in Belgium
A simple catalogue of her triumphs is wholly inadequate. The price for high achievements on the sporting field, even for the most physically able, is very steep. Here was a young woman coping with well-nigh impossible odds. Progressive paralysis, mind-altering levels of pain, terrible injuries. And still she came back fighting. What an indomitable spirit. The sheer grit and perseverance and endurance of arduous training and fitness building as well as competing, can only be dimly perceived.
But a ‘living hell’ was not on Marieke’s agenda of desirable goals. Aware of her prognosis and obvious deterioration, she signed up for euthanasia in 2008, giving her a trump card to hold in reserve. (NB. This is legal in Belgium.) Eleven years later she has finally played that ace. It would surely take a heart of stone to be unsympathetic to this courageous young woman’s decision. Interestingly, also this week, an interview with MP Sir Vince Cable suggested that the Assisted Dying Bill looks set for another hearing soon in this country. I wonder if Marieke Vervoort’s story will feature.
Pause for reflection
There’s nothing quite like a spot of immobility to challenge one’s priorities. So much of who we are is wrapped up in what we do. If we can’t do, what then?
A rather nasty early morning fall on black ice (who ever suggested pre-breakfast power walking was good for people of my age in winter time?!) and the equivalent of whiplash injury in my lower spine, have curtailed my movements rather too effectively. Please don’t misunderstand me – this is no cry for sympathy; I’ve no one but myself to blame. No one forced me. But the effect is that I’ve been doing rather too much thinking for my own mental well being. (Well, truth be told, I was always pretty borderline.)
Regardless of the accident, March was always going to be a weird time, a kind of cold turkey, waiting for the latest novel to come off the production line. No more tweaking. No more proof reading. What is, is. And most ‘next-jobs’ can’t begin until the book is actually available – next week!
It’s surprisingly hard to concentrate when you’re in constant pain – or maybe I’m just a terrible wimp. And everything feels cack-handed. Imagine said author draped over an ironing board to write, read, eat, and you have a glimmering of the scenario chez moi. Just not being able to sit down becomes remarkably wearisome. Life gets reduced to essentials.
Unfortunately ‘essentials’ includes a lot of travel right now – Ireland, Cornwall, Midlands, London, all within the space of three weeks. ‘Keep getting out of the vehicle and walking around‘, advises my expert osteopath. ‘Try reclining the seat and lying on your side.‘ Hmm. I guess it depends on the vehicle, and who’s driving, and how soon you want to get there.
So, reflections it is then.
The trip to Galway in Ireland was for an event about dying – both natural and assisted. I was invited on the strength of my novel, Right to Die, and my background in ethics. Eire is working on a parliamentary bill on this subject right now so it’s a hot topic over there; it was an honour to be included. And I felt heartened. After eight years in print my little book is still borrowed from libraries large and small, and the topic is still relevant and controversial,. All very encouraging.
Question is, encouraging enough to keep doing what I do? Hmm. Let’s see.
Things about my work I love and want to retain in my life:
Reading
Writing
Blogging
Editing and revising
Talking about my books/pet subjects
Entering into the debate
Exploring new topics
Good reviews
Hearing from satisfied readers
Things I’m less keen on:
Promotion
Marketing
Tax returns!
Ahh. The tally says it all. I might revisit this once Inside of Me is on the shelves and my back restored. Who knows, I might even reinvent myself and go for those four inch crimson stilettos!
Assisted life or assisted death, that is the question
Dr Ann McPherson was a committed and energetic GP who made a mark in many spheres of her life. But she felt burdened by her powerlessness to help those of her patients who were terminally ill and suffering beyond their endurance. As a consequence she became an ardent campaigner for a change in the law. When she herself developed pancreatic cancer she knew all too well what lay ahead, but in spite of her own troubles she continued her crusade for as long as her strength allowed. When the disease overwhelmed her, she was forced to endure a horrible death – exactly the kind of end she wanted to spare others from.
Her daughter has courageously shared her story in the BMJ this month, and I found it a most eloquent and persuasive one. She spares few details is recounting the horror. This was indeed the kind of distressing death we would all dread.
Photo courtesy of Photolia
In the same journal at the beginning of July, an editorial called for doctors to stop opposing assisted dying, and rather adopt a position of ‘studied neutrality’ – not apathy, please note, but neutrality – to accommodate the many different points of view doctors hold. The papers include emotional appeals to society to embrace the old and the disabled instead of thinking of killing them; to value choice as an inherent right; to start properly talking about death …
Ultimately however, this is a matter for parliament not doctors, powerful though they may be, to decide. And indeed Lord Falconer’s Bill designed to open the way to a form of assisted suicide in Britain, had it’s first full parliamentary airing last Friday. The House of Lords was packed; over a hundred members queued up to speak; eloquent appeals were heard without interruption. News items, articles, columns, letters – you’d have to be an ostrich to have missed the subject over the last week or two.
So it’s probably not surprising that lots of people have asked me what I think about the subject. In my novels I work hard to give equal weight to all lines of reasoning and not to betray my own opinion. Now, six years after the publication of Right to Die (my own book on this subject), it seems expedient to declare my hand. But first I should say that in spite of my close involvement in this area, I can still be persuaded by the strong arguments on both sides. Emotional firsthand stories still grab me by the throat. I am very far from black and white, I still swither. Indeed, as soon as I’ve posted this, I’m sure I shall read or hear something that will make me wonder all over again. I’d welcome any genuine comment which would point up errors in my thinking. Or indeed any other thoughts on this issue which would contribute to healthy, measured debate.
So, where do I stand? First I should state the problem as I see it: intractable pain and suffering, indignity and distress as features of dying or living with degenerative or totally incapacitating diseases. OK, I know the current Bill is addressing only terminal illness (within 6 months of death – a diagnosis that’s impossible to make with certainty, incidentally), but I want to gather in those who have longer-lasting problems too, who in my opinion, often have a stronger case for seeking a way out of their terrible situation. (I’m not operating under the same constraints as Lord Falconer and his cronies.)
I should hasten to reassure you at this point that I have no intention of rehearsing the arguments or regurgitating the emotive phrases wheeled out by both sides in relation to this current Bill; you’ll be as familiar with them (perhaps even wearied of them?) as I. Rather I want to propose a two stage process.
In the first instance, my appeal to parliamentarians would not be to change the law, but to re-allocate resources. What I’m going to say now may sound utopian, but it’s my view that everyone – absolutely everyone – suffering from a terminal or degenerative illness, should have full access to excellent palliative care of the highest order including, where appropriate, proper psychiatric involvement to eliminate treatable problems like depression or anxiety. At the moment this is very far from the case (even though Britain is recognised as a world leader in this field of medicine). Ask yourself: What kind of a society knowingly condemns some of its most vulnerable citizens to a form of torture, when an alternative is available? It seems to me iniquitous that even established successful hospices are reliant on public financial support to keep going. And that only a tiny fraction of patients who desperately need their services get them.
I would maintain that simply being comfortable and being listened to can change one’s whole perspective on life, no matter how short or long that life might be. So, if pain and distress are capable of amelioration, they should be treated swiftly and effectively. What a different scenario we would have from the outset if that were everyone’s right.
Once this first provision is made, there would be a much smaller number of people for whom life is a prospect worse than death: those for whom palliative care does not offer a solution. And I know only too well that not all pain, not all distressing symptoms, can be relieved: it’s naive to think they can. I would keep these remaining cases well away from media scrutiny (with its attendant risks of vitriol and vilification for those at the heart of these situations). Instead I would propose a system whereby cases could be brought to a kind of Ombuds-committee made up of representatives from the main relevant disciplines who could, with compassion, empathy and experience, in private, help all concerned come to a conclusion which would be the optimal one in these circumstances. And to do so with all speed.
The necessity to go through this process would, it seems to me, go some way towards protecting the vulnerable from vultures and undue pressure to act against their own best interests (one of the biggest worries with the Falconer Bill). And to facilitate this it would be hugely advantageous if Advanced Directives were to become the norm: people spelling out their beliefs and wishes clearly and rationally while they are in complete control mentally.
There would still, of course, need to be careful scrutiny of the legal limits and responsibilities. Doctors should not be required to take risks or actions which are against their consciences or without legal backing. Patients should not be obliged to spend their last days, weeks, months or years battling officialdom. Relatives should not be fearful of dire consequences. Adequate legal provision would have to be made. But in my view it is almost impossible for the blunderbuss that is the law to properly take account of the fine nuances involved in these cases on its own, and to create a catch-all law. Furthermore, at the moment I do not think the Falconer Bill is accurately addressing the real dilemma.
All the Bills drafted to date, all the tragic cases paraded for public scrutiny, all the discussions linked with them, have forced society to address the issues, to look squarely at the problem. And indeed, surveys show that we as a nation are much more sympathetic to the realities faced by these families than we were a decade ago. Now though, we need a mature and measured response that fully takes account of the things we all dread, and moves us to change our ways. To recognise the importance of good palliative care – not only to value it but to put our money where our mouths are. To respond sympathetically to the urgent needs of those people for whom life even with optimal care is intolerable. For those with fierce intractable scruples to ask: what right have I to impose appalling suffering on others who do not share my personal view or scruples?
Shutterstock image
Hmmm. I’m feeling rather vulnerable myself stating my views so forthrightly.
What do YOU think?