It was only a few weeks ago that the Telegraph reported that:
The state of end-of-life care in the UK means the country is not ready for assisted dying, Wes Streeting has suggested.
The Health and Social Care Secretary has previously voted in favour of having an “in principle” debate on the ethical question, but declared himself “conflicted” on the issue.
Now, the House of Commons is to have a free vote on the issue, and nothing has changed.
As a matter of fact UK hospice care is wholly inadequate, which is not a reflection on those charities seeking to provide it. What is absurd is that this is thought to be an issue for charities to deal with.
It is equally true that palliative care within hospitals is underfunded. It would seem as if the UK state is willing to invest in us as long as there is a chance of returning us to the workforce, but when the time comes that we will, inevitably, not do so, it no longer cares.
This worries me in itself. Without any discussion about assisted dying, palliative care needs much more investment. People should have the right to die as painlessly and with as much dignity as possible. When most of us will die over a period of time in our old age, that seems like a pretty basic thing for the NHS to do, and it does not do it well at present.
There is more to this than that, though. Nor do we have proper social care plans for the elderly either, and with Labour having abandoned plans to cap some social care costs for the elderly needing residential care, matters have made no progress there.
Now, there is a discussion of assisted dying. Excuse me for being cynical, but I do see a connection, and I do not like it. Pressure from some families on elderly relatives to consider this route when otherwise the value of any potential inheritance might fall, potentially significantly, will grow. Evidence from other countries suggests that this is what has happened. And that is decidedly unhealthy.
For once, Wes Streeting was right. When the option of a dignified natural death is available, then we might discuss assisted dying for those who want to consider it. But right now, austerity is denying us that opportunity. That means we cannot afford the risk from assisted dying. The required checks and balances are not just medical. It is also that real alternatives have to be available to those facing their own deaths, and right now, the economics of denial is preventing that. When that is sorted, there will be time for this debate. But we are not there yet.
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I could not agree more.
I totally agree too, much though it pains me to accept that Wes Streeting could be right about something.
You hit the nail on the head. Palliative care (and the social care that precedes it), is in a v poor state. By deliberate choice. The funds have been withdrawn. Changing the law now would unwise for a host of reasons.
As one who has the undeniable honour and privilege of being alongside those who pass from this life in the most excruciating of circumstances, there has to be honour and dignity for people making their journey that way. As long as the utilitarian, neo-con mindset persists in health economics, I and my colleagues will see little respite for patients and their families suffering alongside them.
Thanks Peter
And i admire your role
Thank you, both.
+ 1.
Peter
Dr Peter and Elizabeth Fenwick wrote The Art of Dying in 2008. I found it fascinating, practical and compassionate and used it with some of my counselling clients. You may well be familiar with it.
Fenwick has done extensive research into Near Death Experiences and approaching death experiences.
It is a phase of life we need to aware of before it is thrust upon us-as it will be.
There is a lot that is valuable in Fenwick’s work and that of the Scientific and Medical Network with which he has long been associated.
I echo Richard’s thought.
My father’s last words were ‘I think I’m dying’. I wish I knew how he knew.
Thank you, Ian. In one good sense we are now have less immediate connection with ‘death’, not least through the vast reduction in child mortality rates (0 to 5 years old) from when my parents were born (1918 and 20) until now (145 deaths per 1000 live births to 4/1000 in the year 2020), and through better health awareness and care meaning that bereavement is less frequent. Tangential to Richard’s post, we actually need to talk about death and dying! I know some churches have set up café environments where these conversations can more easily take place. Although the ‘death’ bit (for me, at least) is okay, the ‘dying’ bit for countless of us can be rubbish; and the fear of how bad it can be is partly behind the move towards voluntary euthanasia. Patients’ reports of near-death and resus experiences are a fascinating subject and many are undeniable, as are the paranormal phenomena associated with some deaths, whether recent or historically past, something that some churches find difficult to engage with.
I talked with my mother for two hours on the day she was told she was terminally ill. I was 25. She was 55. It was an immensely valuable experience. It made me realise that talking about death is really important.
As PSR. In Canada, people can choose assisted dying if they can’t afford care. In the Netherlands, children can choose assisted dying for mental health problems. I know that slippery slope arguments are often not good ones, but neither of these options is ethical at all in my view. And the accusation that assisted dying would be used to cut costs is ripe for the making. And in a society with little if any care, support or safety net, concerns about money and inheritance are entirely understandable. Medical need is not a lifestyle choice and most cannot shoulder the cost in every sense. I know from direct experience as my father has dementia – the lack of care and support is glaring. He feels like a burden, wants to die, my mother is frequently distressed, has no wish to see him in a care home (these are not good places whatever anyone might believe) as this would be the end for her, as they’ve been together for 64 years.
Thank you and well said, David.
It’s not going so well in Canada where the direction of travel is already well-established; ask for an access ramp to be installed outside your home and hot on the heels of the refusal comes an invitation to kill yourself, “A veteran and former Paralympian told a parliamentary committee that a caseworker from the Veterans Affairs Canada (VAC) offered her medical assistance in dying (MAID), a week after the veterans affairs minister confirmed that at least four other veterans were offered the same thing.
Retired Cpl. Christine Gauthier, who has been trying to get a wheelchair ramp installed at her home for the past five years, testified on Thursday that a caseworker told her that they could give her assisted dying, even offering to supply the MAID equipment for her.
“I was completely shocked and in despair,” she told CTV’s Power Play on Friday. “It is remotely just what they’re doing: exhausting us to the point of no return.””
https://www.ctvnews.ca/politics/paralympian-trying-to-get-wheelchair-ramp-says-veterans-affairs-employee-offered-her-assisted-dying-1.6179325
Thank you for your service, a grateful nation will now help you kill yourself rather than lift a finger to assist in your difficult passage through what’s left of your life.
This is clearly what we’re opening the door to here; is it really what we want? What do our armed forces think of this, I wonder? Have they been asked, even?
I am familar with that example.
It is where I think this will go here.
Can you imagine the horrendous family discussions of where, when and how any given member should die?
Who would want that going on at the bottom of their sick-bed?
More social division in action, family members are pitted against each other instead of govt; the real threat.
Is a society which cannot face up to and fund genuine all life care for its sick members, a society which can be trusted to face up to and fund assisted dying for those – and only those – terminally ill who genuinely and freely wish for that end to their life?
I fear that while the first is slipping backwards, there can be no confidence in the latter.
(From my experience of being thrice bereaved, I also suspect that many, if not most, people’s views on the subject are more theoretical than is helpful.)
They want an easy way to get rid of the Boomers, I suspect.
If I were to be cynical (and I usually am), I’d say that they are pushing this ‘Free vote’ forward now as a means to get a noisy distraction into the news from all the stories about gifts and freebies and so forth. Regardless of anything which comes out of this, the heat and light is what they want now.
It may just be me, but as someone who is expecting his older years to be rife with illness and health complications, I would be happy if the option of assisted dying were to be available to me should I reach the point where I might feel prepared to consider it. I’ve had more than an average share of hardships in my life and yet I’m not a believer in the redemptive value of avoidable suffering. My wife is an adult social worker and more and more of the cases she sees could be described as systematised elder abuse by our ever more dysfunctional social and health care sectors. With the single-transferable-party determined to continue undermining our services via never ending austerity politics, a way out for many who will end up trapped in the vicious cycle of suffering and abuse those choices will represent does not seem a bad thing, in my opinion, despite the clearly highlighted risks of abuse you raise.
I would say, regarding you last paragraph, these are reasons to fight for those who love and care for those affected, ultimately us all. Austerity harms everyone, despite those at the top thinking they are immune. To opt for death would be a decision of despair. In that case fighting against the STP would be a choice with no loss, since the other choice would be death. That would free up all sorts of possibilities for resistance.
As you know, Richard, I’ve been following your blog, and occasionally commenting, since before the election in 2010 and, as far as I’m aware, this is going to be the first subject on which I’m going to disagree with you (and most other’s here too, it would seem).
I too have first hand knowledge of dealing with elderly people near the end of their lives. As my parents died many years ago, I was responsible for caring for my grandparents (on my mother’s side) as they made their way through their 70s and into their 80s. This included a period when they were in their mid 70s when I lived with them. My grandfather was a ‘matter of fact’ kind of man and as a consequence had no qualms about discussing what they wanted to happen to them as they got older and, eventually, near to death. Both were absolutely unswerving in their belief that they did not want to end their days in a care/nursing home. Indeed, their preference was that they should die together – having been together over 50 years by the time they were in their early 80s. And I’ll emphasize here, this had nothing to do with ‘being a burden’, or ensuring someone got ‘an inheritance’, or any of the other age old tropes that are trotted out when discussing this topic. Nor would it have made the slightest bit of difference whether residential or palliative care was five star, world leading or not. They simply wanted to die with dignity, before ill health or dementia took away their ability to control their bodies and their minds, and thus, at a time of their choosing.
By the time they hit their mid 80s – still living in their own home, still with their mental faculties, but unfortunately not very mobile, particularly not outside – and with almost all their friends and acquaintances dead (my grandfather was a stickler for scanning the obituaries in the local paper) they often said to me that it was ‘time to go’, that they’d ‘had their time’ (and, they’d add, a good one at that – despite the death of their daughter – my mother – in her 30s), and so on.
Sadly, this was not to be. My grandfather had a fall one night while making his way to the loo, struck his head and fell into a coma from which he never recovered, dying two weeks later from pneumonia in Ipswich General Hospital. My grandmother soldiered on in their home, heartbroken and forever sad. She eventually had several falls and so I reluctantly persuaded her to go into a care home ‘for her own safety’. She hated it and said to many times that she just wanted to join ‘her dear Geoff’. To make matters worse, the owners of the home were scoundrels (I’m being polite here), taking full advantage of the fact that I didn’t live locally and therefore was only able to travel over to see my Nan every other week.
It’s too painful to recount the details of this situation, except to say, that it’s to my shame that it took me a year to find her another care home, this time run by the local authority, in a lovely location just outside Ipswich, and with wonderful staff. However, by now my grandmother had started to develop dementia. She was well aware of what was happening, and, although much happier in the home she was now in, she repeatedly expressed to me and the staff that she was tired and just wanted to ‘fall asleep and not wake up’ (to use one of her phrases).
Of course, that’s no the current way of the world. And so, she was forced to soldier on as dementia destroyed her mind to the extent that by the time she was 88 she no longer knew who I was, or indeed, who anybody else was most of the time, nor where she was, or what her life had been. She died, sat in a chair in the corner of a room, in a place she never recognised as her home, surrounded by people she never knew, with me trying to make the 100 mile dash to the care home to say one last goodbye. Something which I didn’t manage.
So, I agree entirely that the way successive governments have failed to deal with all forms of care for the elderly in the UK is a disgrace. And, further, I agree that the impression given is that as long as someone is fit to work they matter, but when they’re too old to work, and worse still, become sick and infirm, then our government effectively washes their hands of them. But advancing the argument that assisted dying should not be debated and, hopefully, action taken, until residential and palliative care policies improve is akin to arguing that people should stop giving birth until child poverty is eradicated. To be frank, tying certain policy choices/ decisions to others is simply a recipe for inaction, and inherently defeatist.
For my part, I shall go to my own grave always lamenting that I was unable to help my grandparents die in the way they wished, and with the memory of how they suffered because of that. All I can say in conclusion is that I hope when my time comes I have a choice (and yes, of course, with all the necessary safeguards in place), and that I can die with dignity at a time of my choosing.
Ivan
Thanks for relating that.
And I stress, there is much in that story that I and others will recognise. The last time I saw my father concious he asked if I had brought a gun. His wish as to what to do with it was clear. He had had enough, and I think many reach that stage.
But, the question is, how to we make sure that assisted suicide (because that is what we are discussing) is not abused, as I fear it will be? If I could answer that question, and I knew proper palliative care was available, we could make an informed choice. My problem is that I am not sure that we can.
That’s why I have to disagree.
Richard
Thanks for adding your own experience with your father, Richard. As you rightly say, many people reach that stage, and it’s a very sad and uncomfortable situation to have to deal with.
And you’re also right to highlight that what we’re talking about here is assisted suicide. Indeed, many years ago I joined an organisation called the ‘Voluntary Euthanasia Society’, which has now morphed into ‘Dignity in Dying’. Here I’ll stick to using the term ‘assisted dying’.
My main reason for commenting again (having hesitated for some while before deciding to) is to make two points which I think important.
The first relates back to a blog you wrote some weeks ago on the pointlessness of trying to formulate perfect policy, which is, by definition, unachievable. Consequently, trying to achieve it is simply a waste of time (perhaps deliberately) and resources, when what’s needed is a pragmatic approach that attempts to address whatever issue it is that needs tackling and then develop policy out from there (just to note that the ‘policy cycle’ many students of government and politics once learned consisted of the following stages: Formulate; Implement; Evaluate; Reformulate) .
Of course, any policy is open to abuse – examples of which you frequently highlight on your blog. Assisted dying would be no different, though the outcome of abuse may well be more concerning than in many other cases. Consequently, considerable thought has to be put into the safeguards that would be included in any policy, and in this respect much can be learnt from assisted dying policies that are already in operation around the world.
The problem I and many others have with the past and current approach to a potential policy on assisted dying is that concern about safeguards is used to block (or defeat) almost any debate on the subject. In short, the argument becomes focused on coming up with a perfect policy, when in reality this is unachievable, instead of focusing on something which is as good as we can get it in the first instance and then evaluate and improve from there.
Of course – and as I noted above – there may well be instances of the abuse of any assisted dying policy. But to do nothing – as we’ve done for decades now – condemns many people who share my views on this subject to an end of life that is effectively forced upon us. That to my mind is a policy failure that’s as significant as it is to contemplate an approach to assisted dying that doesn’t include all relevant and necessary safeguards and penalties to try to counter abuse of the policy.
Secondly, it would be disingenuous of me not to note that there’s a religious dimension to this subject, as I’m sure you well know. I’m not implying in any way that this applies to your viewpoint. But it cannot go unsaid that too often over many years the argument about safeguards has been used by those with a religious position on assisted dying as cover for continuing the status quo, and thus the denial of choice to those of us, like me, who have no faith based reason for not being able to choose the nature and time of our death. As Deborah Booth, the other responder to my initial comment on your blog says, I accept fully, and respect, that this attitude and approach is not for everyone. But equally it’s high time the same degree of acceptance and respect was extended to those of us who wish to have a choice over assisted dying.
That is, quite literally, something for me to sleep on
Thank you
I struggle with the idea that the dangers of assisted suicide outweigh the horrors of requiring someone to continue to live when their own sane and clear wish is not to do so. If it is only physical inability that prevents someone taking their own life, why should they not be assisted, in the same way as they should be assisted if it is only physical inability that prevents someone working.
Obviously, there need to be safeguards, but working out how to ensure those safeguards will never happen if there is no discussion about the issue.
I too, for the first time in a few years of following Richard’s blog feel in disagreement. I have thought about this long and hard over many years. I do not want palliative care, I want to be able to have the choice to leave this earth exactly when I choose, on my terms, in my own time. Safeguards yes against coercion essential, but please, give us the choice Now ! The analogy with eradication of child poverty before having children is an excellent one. I have studied Not Eating or Drinking as a way out, so that you do not have to implicate your friends/family etc.
An uncle of mine, aged about 91, rather frail but not sick, lay down on the floor one day and said “I want to die now”. Instead of the family tucking him up in his bed and allowing him just to go, happily and peacefully, had him bundled into hospital where he died a couple of days later, not a happy bunny I was told.
In the 90s, for a short while I worked with Aboriginal people in the Northern Territory, Australia, in a closed area called Arnhem land. I learnt there, that in times past, if you couldn’t keep up when moving to a new spot in your territory, you could chose to be left behind. I like the idea of being allowed to just slip away into my land, when I want, not being forced into some home, good or bad, sick or not. Not for everyone, this I accept totally. For me, the whole argument pivots on one word only, CHOICE.
Thanks for sharing that
@ Deborah Booth,
Choice works for me; as long as its mine and not someone else’s.
The ultimate horror, for me, is being permanently horizontal with little influence over my day-to-day existence.
I’m fond of life (I’ve had an interesting one thus far), but if I ever decide its time to go, I want the option.
Ivan
I have to say this is a very powerful piece.
My mother got to 100 but had poor hearing and worse vision. She was bed bound ( but did not qualify for continuous nursing care ) Almost every visit she would say how glad she was to be able to leave her flat to my brother and I. She had to cope almost all of my youth on very slender means. I couldn’t tell her that we might only get the £23,000 residue.
I , and sometimes my daughter or wife, tried to visit most days of the week. On day my wife did a morning visit and over lunch said there was a smell. Having read the Fenwick’s book, I asked , ‘is like acetone?’ Yes.
I knew that this was a sign and visited that afternoon. She was able to talk but then became incoherent.
She died that afternoon with me there.
I have to admit we did not have a close relationship. It wasn’t anyone’s fault. It was the way she was.
But reading your post, I feel lucky to have been there at the end and we ended the relationship together. I don’t use the word closure but it applied here. Thank you.
Your grandparents had their path to walk. Can I suggest you did your best and no-one can do more? You can let go your regret. Best wishes
And thanks to Richard for hosting this discussion.
I am genuinely grateful for the sharing of these stories
Thank you
Many thanks for your comment, Ian. Much appreciated.
And I too thank Richard for hosting discussion of this topic which is never an easy one to have.
My thanks to you both
You have both given me much to think about
My first thought after reading your blog, Richard, was why on earth did I not think about the alternatives. Then I read through the comments and now need to go away and think again! Such is the power of this medium.
A further thought was that there is evidence that the prevalence of dementia is significantly tied to environmental factors as are some cancers and other illnesses that threaten our lives or quality of life. Investing in removing chemicals, particulates and plastics from our environment would go a long way to reducing the need for assisted dying provision.
Finally, that there is a glaring mismatch between the concern for coercion in this debate and the blasé acceptance of people dying daily through drug and alcohol abuse, road accidents, suicide, poverty and a host of other preventable causes.
We really do need to be talking about death.
There is also very strong evidence that dementia is sugar related – some doctors now call it type 3 diabetes. The Ned to tackle ultra-processed food is urgent.
It is not normal for people to want to die.
It is not normal for the sick and elderly to live in terror that they will not be cared for at the end of their lives.
We should not be normalising either of these situations.
I agree with Richard.
I am sorry, Roger, but it is entirely normal for someone to want to die. I don’t mean those who are suffering from a mental condition that prevents them making a logical assessment of their position, but many, many people know that they want to die when they feel it is their time.