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September 29, 2021 - 7:00am
The case of Alta Fixsler, a young girl born with catastrophic brain damage, leaves one with a sense of deep sadness at the tragic nature of life. It strikes at the heart of debates around life and the context of death, particularly during our debate over assisted suicide.
The Royal Manchester Children’s Hospital has won legal support for removing life-support from Alta. Her parents, Hasidic Jews, have disagreed, with dissension rooted in their faith. The case hinges on the hospital’s argument that Alta experiences “constant pain.” Despite parental protestations that she is in no distress, her clinicians have argued this is simply her medication suppressing the pain. The evidence of involuntary movements, interpreted as spinal spasms, supports the withdrawing of treatment to alleviate suffering.
And yet, as Dominic Lawson argues in The Times, how can this judgment be based on pain Alta experiences? He quotes leading pain expert Dr Rajesh Munglani, to the effect that it is nonsensical to remove treatment due to pain. Alta Fixsler can’t actually experience suffering: it is a higher cognitive function. It is highly likely she cannot experience pain because her damaged brain prevents this. According to Dr Munglani, spinal spasms do not prove pain either.
This gets to the crux of our societal debates over what constitutes a life worth living and a death worth dying. Many who argue for assisted suicide do so on the basis on alleviating unbearable suffering. This is understandable, but is not necessarily the true motivation. In 2020 in Oregon, USA, where assisted suicide is legal, 53% said they chose this path to avoid being a burden; add in the likelihood of contributory psychological issues and pain as a reason slips down the list.
The use of pain as a means to push arguments for assisted dying betrays a cultural misunderstanding of pain itself. Having a genetic fragile skin condition, Epidermolysis Bullosa, I am intimately acquainted with pain in its various forms, from the wearingly chronic to the excruciating acute. This is of course a burden I’d not wish on anyone. But for me the pain itself is not a reason for despair or loss of hope in life itself. The point is that my disability is a particular, concentrated example of the universal of pain we all face, given that we all exist on what Alasdair MacIntyre calls a “scale of disability”. Simply reducing life to pain and suffering as measures of life’s quality is a cold utilitarian calculus, devoid of life’s (and death’s) complexities. Questions of meaning, purpose and relationships are stripped away.
Returning to Alta Fixsler, the question is whether she qualifies as a human person, with all the resulting rights and duties that entails. It is because her parents believe she qualifies that they wish to take her home to die. Further to this, do those like myself qualify as persons, or not? If pain and suffering are life’s main measurement, then the compassionate effort to alleviate this will end in a callous move to erase it altogether: by removing the people themselves, reduced from persons to beings, as the source of the suffering. It is already happening in places like Oregon, Holland and Belgium. We should not follow them.
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SubscribeThis is a partial argument, it has partial truth but avoids facing the issue of pain in a straightforward way.
The ‘pain argument’ often used by those in favour of assisted suicide is about unrelenting severe pain experienced by a person conscious of it.
If pain can be successfully controlled or born with equanimity then that is a different argument.
If the person is effectively unconscious but depends on medical support with no long term prospect of any form of normality then that is a different argument.
If we are reduced to duelling anecdotes the I can say that I have been present when a completely and irrevocably non-conscious person, supported by medical intervention, was not allowed to die by relatives who refused to let them go.
Very finely argued. But let me put in plain blunt terms the sort of example which must give idealists pause: a person in excruciating, untreatable agony – evident, agreed, conscious and appalling; a burden to anyone who comes near with medicine or sustenance or care; which issues in screams of distress and unceasing sighs of angry despair; which banishes sleep. Do we smugly tell such a subject to “go on”? To live for something “more than gratification”? Doesn’t the intolerable anguish of the very sight of them tell us that, in this instance, life is no longer bearable and that all the finer things are done with, as far as they are concerned? You will be tempted to tell me that many people put up with pain; that there are ways and means; that the instance I offer is imaginary and that if it corresponds to a truth, it is mercifully rare. Mercifully! Not merciful for the one or two people whose condition it describes – and even if, as I hope, they do not exist, the question is still a philosophic stumbling block, for it demonstrates that the pleasure / pain axis is inescapable, fundamental and foundational. Anything which seriously contradicts it is by definition insane. As for the will and decision of the patient – yes, if they want to go on, who am I to stop them? But I think it very unlikely that they will wish to do so – so profoundly are our choices a simple matter of seeking happiness.
I remember reading many accounts of soldiers in WW1 shooting mortally wounded fellow soldiers – regardless of which side they were on – as mercy killings. The measure of the argument is: if faced with a 19 year old who had his legs and arms blown off in a muddy crater and was slowly bleeding to death would the author callously leave him to slowly die on the basis that ‘life is suffering’?
The fact that many did this spontaneously to me suggests that there is a primal instinct to prevent unnecesary terminal agony, against which the arguments against this strike me as rationalisation developed from Kantian deontological abstractions – as much an abstraction from real life as simplistic forms of utiliarianism are – that crumble in the face of specific circumstances.
Excellent comment. In such circumstances it should be up to the individual, or their peers if said individual is incapacitated. To keep someone alive as they suffer excruciating unending pain, even if based on high-minded ideals, is nothing more than torture.
And yet it is something that seems, unfathomably, to give some a frisson of moral superiority. I just cannot understand how.
The opposite of assisted dying is unassisted dying in intolerable and prolonged agony. Calling it assisted suicide is needlessly pejorative.If I have pain that to me is intolerable and I want to die not by suicide but with medical assistance, why can’t I choose the time and form of my exit? What is the interest or source of moral authority of the state to interfere with my choice, assuming that the physician who administers the medication does so voluntarily?
The difficulty with that argument is that it’s supremely selfish. “Why can’t I do what I want?” This argument ignores those that might be affected by our decisions. Witness the grieving families & friends of people who have died by suicide. Others are affected by our decisions- that’s why we have numerous laws, ranging from speeding to health & safety.
The same is true in this context.
What people are arguing for is not actually the ‘right to die with dignity’, but the right to be killed.
In the last 6 years I have watched both my parents die with serious illnesses. My mum had cancer & my dad had Alzheimers.
Both became frail & declined physically very fast towards the end.
The doctors (in consultation with my sisters & I) had some difficult decisions to take, such as putting DNRs in place etc.
At no time however, did we think that killing them was an option.
These distinctions of deeds between commission and omission are frankly not very meaningful. Such measures as DNRs, the removal of water and the administration of high does of morphine, are not ethically different from administering a drug that would hasten the end of a suffering person (an end which is inevitably approaching in any case, but possibly slowly, uncomfortably, full of distress or even very painfully). The only consistent moral position contrary to this, would be that all medical intervention be refused, on the grounds that it is for God to determine our fates.
…. when medicine became expert at stopping you dying… it has forgotten how to help you to live ….
The article does not distinguish between ending the life of someone else and suicide which raise different issues. It is not illegal to kill yourself, it is perfectly understandable that some people feel they have lived long enough so the safeguards needed are that they not under direct or social pressure and they have thought through the irrevokable nature of their decision. For those that cannot make a decision we need research on what stimulates conscious experiences so that we know when it is no longer possible. Until then it is pure speculation.
In a world populated by honourable beings, doctors, families and patients where consciously able, would decide between them what is to be done in each individual case, and the state would take a back seat. But in this real world of dishonourable actors we are left with hard cases on the one hand and the possibility of opening up a general ‘right to die’ which, while it might be limited at the outset will, through more hard cases and legal activism, be extended ever wider so that in the end even depressed teenagers, the newly bereaved, the freshly divorced and all the recipients of life’s inevitable but ultimately overcomeable vicissitudes, will be able to demand that some agent of the state must kill them.
We already have ‘right to die’ – there are many suicides per year – some of them for medical reasons – not that hard to organise really.
Suicide was a crime in the UK until 1961, and still is under some jurisdictions. However if carried out succesfully its legal status is somewhat moot. Nevertheless, having ‘the right’ to kill oneself is hardly the same as having the right to demand that the state must kill you via a doctor or other appointed agent.
Wow! I think this is a poor article and has no one noticed that there is an article on UnHerd about Peter Singer– the “kill the disabled” guy and how he may or may not be cancelled again?
The article mentions religion only in passing, but isn’t religion at the heart of the debate? And isn’t it also about economics: who should pay for an arguably useless “life?” Isn’t this just an infant version of Terry Schiavo? (Google it). The parents happen to be ultraOrthodox Jews, but the same arguments are often used by so-called Christians, who claim to value the sanctity of human life above all else. And isn’t there a dogma in Judaism that says that life does not begin until the child is a year old (or some variation on this concept), essentially accepting the reality that (in the past, at least), many children did not survive the first year. Torah/Talmud experts can add value to this concept.
What is the point of keeping Alta alive? I don’t want to pay for it, do you? Why should the NHS pay? I vaguely remember reading (not here) that Israel would pay if a transfer can be arranged, but what’s the point?
Don’t we, as a society, have to grow up? Let’s be compassionate, but not stupid. Pull the plug!
see my Singer comment…
Basically, no one knows whether this poor child is feeling pain, because she cannot express even that. All the expert and parental guesses are just that : guesses.
I would prefer to err on the side of compassion and advise that as this person cannot sustain life without artificial aids, to which they are unable to give consent, the presumption should be that she is suffering and so the moral duty is to stop prolonging her potential – and probable – suffering. While the experts and the parents argue, the child is being held in a living death.
by the way, I think the author is muddying the waters by referring to his own chronic condition as an argument against such termination. I don’t think anyone is considering killing him or even urging him to opt for euthanasia because of his physical condition, but of course ‘ making it personal’ must seem a potent argument. But really, we all have skin in this game, because the potential of suffering extreme discomfort and distress towards the end of our lives is present for every mortal being.
I think the “pain” in some of these cases is felt by the observers, not the parents in this case obviously, but the medical people and other outsiders. It’s their pain they want to alleviate and actually they should just remove themselves from the situation in that case to alleviate their own suffering.
While not advocating bumping people off willy-nilly, actually making it legal is best part of the problem. I remember an elderly nurse many years ago telling me that medics would occasionally give a patient an overdose of meds to help him on his way if they saw unbearable suffering, as did midwives with a terribly disabled newborn. Yes, I can see the problems here, but so are there major flaws with legalising killing.
Jesus said “Come to me all you who labour and are heavy burdened and I will give you rest”. We do not have the right to take a life for any reason. In difficult situations we should pray and also do our best to relieve pain and suffering.
And for those of us who think religion is a fantasy, why should we be prevented from choosing our own death by those who believe in this fantasy? Why should religious people get to remove our free will?
death is the potentially the final act of personal agency and autonomy – and many people understand that fact and act upon it – and I hope that eventually i will have the courage of my convictions. I aint gonna do 8 years of dementia , as did my dad, and cause untold stress to his family…………
It is depressing that this factor is rarely discussed.
I had a similar family situation to yours, and there is no way I’m putting my family through the suffering of watching me die slowly.
How does a hearsay comment apparently uttered a very long time ago add to this debate?