Burgess, Levin, Eliot, and "Assisted Dying"

As you can see (despite the bookish references - can't help myself) - this is not a WTRI piece: which is why I'm putting it out on a different day. It's about something that's been concerning me for a while - largely because, it seemed to me, that no-one was discussing the crux of the issue; which, in view of the subject, was (and is disturbing). So, since I have a Substack, I’ve decided to put those concerns out there for further discussion: obviously, if you're only here for the books - skip on by; normal service will be resumed shortly.

If you're staying, a couple of points:

You may (or may not be aware) that in the UK, a Parliamentary debate regarding legislating for euthanasia - currently in very specific circumstances (Assisted Dying for Terminally Ill Adults (End of Life Bill) 2024-25) - is approaching its third reading; in other words, if successful, rapidly approaching becoming law.

This essay seeks, within limited space, to raise the most salient concerns suggested by such a proposal; many of which do not appear to have been discussed widely - if at all. Even so, it only scratches the surface (and still runs rather long - you have been warned): if nothing else, a helpful exemplification that this really isn't soundbite material - which is how some of those advocating on the subject appear to have been addressing it.

The first point to be considered before any new legislation is necessity: is the course of action postulated by the proposed law necessary; and does it meet needs and requirements that can only be addressed in this way? The first thing to recognise is that assisted dying already exists.

Assisted dying already exists

Medical practice already has in place the means of ending terminal illness: for instance, when the administration of pain-relieving drugs will, because of the increase in dosage necessary to achieve a result, inevitably end in the patient's death; by the administration of drugs such as morphine in, say, certain cases of infection, where the drug may accelerate the progress of the infection in pursuit of a placebo effect: again, resulting in death; the ad hoc decisions made in crowded A&E departments, under the flag of triage. (Both the latter obviously raise greater concerns ethically; but they are part of the current medical landscape.) There is the withdrawal of treatment; the switching off of life support machines. Those are some examples: the ways in which the medical profession can assist towards death are already various.

What does not, currently, exist in this country is the possibility of a patient, diagnosed as terminally ill, requesting the acceleration of such an outcome: acceleration being the operative word since, under the current proposals, the timeframe for action is if a patient is diagnosed with a maximum of six months to live; something to which we shall return when considering the operative phase, but shall consider here in the light of diagnosis and treatment.

The medical profession isn't infallible

Nobody is. But what if someone is diagnosed with a terminal condition (with a strong possibility of future suffering): none of which would materialise further down the line; or manifest less troublingly; or the person found themselves better able to accommodate than anticipated; or the person’s perspective changed - all possibilities which have occurred under such diagnoses - but unfortunately, the person has already decided, preemptively, to die while (they believe) they can still make that decision?

A very famous example is the author, Anthony Burgess: diagnosed with an inoperable brain tumour in 1959; and given less than a year to live. More than thirty novels (plus plays, scripts, literary criticism, musical compositions) later, he died in 1993 - swiftly, of lung cancer. Burgess's response to the prospect of imminent (possibly painful) death was attacking life; writing four novels in a year in an attempt to provide for his putative widow. Another person might give up and decide to cut their losses, as they see it.

(Another, obvious and famous example is, of course, the physicist Stephen Hawking who suffered from motor-neurone disease - a condition often cited by these advocating for the bill.)

Anecdotally, the experiences of the Minister for Health, Wes Streeting, with his elderly parents; and of the former Chancellor of the Exchequer, Gordon Brown with his daughter, also illustrate, extremely cogently, the dangers of blanket assumptions regarding desire for, and quality of life. It really isn’t “one size fits all”, nor is it possible, or desirable, to make it so. Again drawing on personal experience, many of us will have seen how lives which could be dismissed as diminished or no longer "worthwhile" continued to be very worthwhile for those living them. If one also considers that currently the primary cause of death for many vulnerable patients is still iatrogenic, in conjunction with statements regarding the strong necessity to improve palliative care made by both Streeting and Brown, it strongly suggests that the real priorities in need of addressing, regarding the nexus of complex care, care for the elderly, and care for the seriously and terminally ill, lie elsewhere.

Additionally, (and surely a major concern ethically, practically and therapeutically): if someone is given a prognosis of six months to live - the bill's remit - the correlation between this timeframe and the proposed course of action, seems so disproportionate as - ethical considerations aside - to render it both pointless and undesirable. If the proposed security measures were fully and stringently observed, the patient - if accurately diagnosed - would be dead before any final decision. If the patient were still alive… well, QED. Surely, a better use of resources would be in appropriate care.

Then there are the possible unintended consequences; one of the most concerning of which is the prospect of undue pressure.

Undue pressure and “utility”

Many people have already spoken - rightly - about the risk of undue pressure being placed on people to end lives perceived to have deteriorated irremediably, to relieve others of their "burden"; potentially interpreted as within personal relationships, or on the wider society, expressed as the state.

Nobody appears to have spoken yet of the very serious contingent argument implicit in this: that if people can be categorised as burdensome, they are automatically being categorised as either "useful" or "no longer useful"; the implication being that it would be better if neither personal resources nor those offered by society are "wasted" on them. (A cynic could argue that it's certainly one way of attempting to reduce National Health Service (NHS) expenditure - as long as one doesn't flinch from ethical bankruptcy; and, of course, it wouldn't reduce the bill in real terms.) The implications for society of such categorisation are disturbing.

(An excellent fictional example/warning is Ira Levin's novel This Perfect Day, in which death is socially mandated for everyone at 65. No exemptions. Except, as it transpires, for an elite group who live comfortably outside the rules they're administering...)

This naturally brings us to the question of safeguards; which, under the current proposals, do not seem even to approach adequacy.

Inadequate safeguards

These seem to have been devised with hopeful intentions; are extremely sketchy (especially in clearly not envisaging scenarios where anything and everything goes wrong); and also appear to have been devised by people with no direct experience of how medicine, social care, and the courts interact in life, as opposed to hypothesis. All of these are tremendously overburdened: which in practice often translates to a rubber-stamp process, executed by harried professionals who know which boxes they have to tick. This is already proving extremely problematic. Do we really wish to exacerbate the malfunctioning of an already overloaded system?

Sir James Munby, former head of the Family Division of the High Court, (so someone with direct experience of their real-life functioning), has raised concerns regarding the potential pressure the proposed involvement will place on the courts. Lord Falconer, former Lord Chancellor, is breezily optimistic: hearings could take place across all divisions of the High Court "and other cases would have to wait." The first part of this statement makes a nonsense of the existence of a specialist court such as the Court of Protection (presumably the most appropriate); the second, takes a rather cavalier attitude to the rights and needs of the citizen in general - not really ideal when considering an ethical question of enormous consequence - as well as ignoring the fundamental principle of forward planning: don't only prepare for your desired outcome. (To be honest, the impression he gives is that he believes the bill is a done deal and doesn't have the time to waste on performative defence of it.)

The current riposte to Sir James’s (and others’s) informed legal reservations is to propose jettisoning the requirement for a High Court judge altogether; substituting judicial oversight with a panel of “specialists”, including social workers. Since nobody is currently a “specialist” in this area, this immediately raises red flags. (Also serious cause for consideration: the frequent, evidenced failures of social work teams - also overburdened anyway - around serious life and death issues, too many resulting in preventable deaths of vulnerable persons supposedly being supported and protected; a recent example would be the case of Sara Sharif, abused to death by her father; a case which had, of course, to end under legal oversight, in the courts.) Has anyone considered the possibility of legal challenges to accomplished “assisted deaths”?

Even more importantly, eliminating a protective proviso in pursuit of assent does not suggest any understanding of the issues at stake; or any seriousness in considering them. When the death penalty (judicial murder) existed in this country, death could only be socially mandated by a judge, after a trial by one’s peers, i.e. society; so awful that it was accompanied by its own ceremonial, the donning of the black cap. Death was, as it should be (because, to state the obvious, we can’t restore life) taken seriously. (And even then, inevitably, they could get it wrong.) Or we could just scramble together a heterogeneous group who will almost certainly just go with the flow: if the patient’s case has reached them, they’ll rubber-stamp it; it’s what the person wants.

Because there are - and will be - a lot of pressures around administration of and provision of yet another medical service. Or is it? Yet another question to be considered, because flip-flopping between diagnosis, legal mandates and social work teams, this hasn’t yet been clearly defined. Whose is the ultimate responsibility? What is “assisted dying”? And financial considerations are - and will be - imperative.

Funding

Where is the money going to come from to fund what would be - understandably - an extremely labour-intensive, human-resource-heavy, expensive undertaking; an undertaking apparently being demanded by an extremely small group, from a health service already on its knees? The NHS is already often failing to provide the most basic necessities of health care. Which of those services would have money taken away from them? Which should be prioritised?

Dying as business

Moreover, since it will become necessary to package and process this system of dying, it's inevitable that it will become a business - especially within an NHS and social care culture that already contracts out a wide range of services and roles. There will be companies tendering services to the NHS, both medical and legal. Since the purpose of a company is to make money - what does that mean for those potentially vulnerable within this system?

Also: funding (again). Will de facto categories of death package arise? London Clinic-style versus the overcrowded ward of an overloaded local hospital with limited facilities and not enough staff?

What if the NHS becomes partly (or even fully) privatised in the future? (Overall, proponents of this bill do not seem to have engaged in any forward projections of substance.) Presumably, not a desirable outcome in itself; but very important to consider worst case scenarios. Imagine a system of health insurance where it's clearly in the insurer's interest for a terminally or extremely ill patient to die, regardless of that person's situation, needs, wishes; and imagine how those needs and wishes could be placed under fiscal pressure. We can already see how insurance companies respond to patient diagnoses of serious/complex illness (refuse to pay), so it's not difficult to envisage their response.

What if - surely inevitable - the relationship between the companies providing death services, the NHS and the vulnerable patient mirrors that between the banks, financial services companies and the consumer, earlier this century? Not a good outcome; and, clearly, the stakes are stratospherically higher.

Future risks

Even if we hypothesise that this system is implemented successfully by the current government - what about the future? Governments change; so does the party in power: what may have started as a protocol with a limited domain and effective oversight may, very easily, become something else; depending on the priorities of said government. Easily, because the most serious boundary - that in society you cannot kill people - has already been crossed. Recent history (Germany in the 1930s, say, before the Holocaust) warns us of how a corrupt, populist government can act to excise what they describe as expensive, "burdensome" (that adjective again) citizens - no longer citizens in their "uselessness" - from the "healthy" national body: and the expensive national bill. At that time, it had to be done secretly because state-mandated executions (other than judicial murder within the criminal justice system) were still not generally seen as acceptable. Do we really wish to open the door and lay down the red carpet for any future bad actors? And, do we really wish to approve and instigate (having abolished capital punishment) a new axis, of medico-legal murder?

This brings us to the crux of the issue: the real and most fundamental question - and consequent decision - raised by the bill; against which everything else is ancillary detail.

What is the relationship between the state and society regarding intentionally killing another person; and do we wish the current relationship (forged over centuries) to change?

Killing people

Killing people is one of the fundamental social taboos for good reason. It's a necessary protection within the social group. Removing that taboo, supposedly therapeutically, is crossing a boundary that cannot be uncrossed - but can extend its terrain exponentially. It might start with the terminally ill: but the possibilities for incremental extension are as numerous as the states, anxieties and concerns of the human condition. (And that's on the assumption that it initially operates as planned.) The Justice Secretary, Shabana Mahmood, stated "The state should never offer death as a service." Objectively - regardless of the affiliations of whoever makes such a statement - this is an ethical position based on a fundamental social tenet; (any personal beliefs that people may hold, may influence their endorsement of this tenet); but endorsement is not in itself an expression of, say, religious belief: it's a recognition of an objective ethical reality underpinning our social order. This is a conversation about reframing the fundamental relationship between society and the state, by extending the state's permissions in relation to the individual: focused as whether to approve what is being described as "assisted" dying (medico-legal murder of approved patients). It is not a conversation about religion; (although Lord Falconer's arrestingly populist claim that the current Lord Chancellor and Justice Secretary is seeking to "impose" her "Muslim beliefs" (very specific) raises some interesting alternative questions).

The writer, Frances Gibb, in a letter to The Times, refers to the fact that "although the bill [is to enable] the terminally ill to seek an assisted death...there is already pressure to include those facing intolerable suffering." Again, a very slippery slope just waiting to be hurtled down. How do we even start defining that? Where does it end? And within whose control?

Personal consequences

Frances Gibb also - rightly - writes of "corrosive consequences" for the doctor-patient relationship implicit in the proposed bill. One can extend these potential corrosive consequences to family, and personal relationships. It’s worth noting that there has already been judicial consideration of removing the current ban on benefiting from the estate of a person assisted to die. (Logical in its way; although, obviously, not addressing the larger question); and with umpteen potential ramifications. (Indeed, a whole new genre of whodunnits springs to mind.)

There are also the consequences for society and the individual doctors who end up administering the system. Apparently, in Canada there's a doctor roaming around (his job is to visit and deliver the coup de grâce), happily claiming an ever-increasing roster of deaths; mandated by society to do so. It suggests that the people prepared to take on these roles may not be those who should be allowed to; as well as, concomitantly, that even those with good intentions are likely to be corrupted eventually by constantly wielding such an extreme of power. We all know that absolute power corrupts absolutely; and what could be more absolute than killing people - particularly when you work within a professional framework that mandates the opposite? (There's a strange cognitive dissonance in an argument that supports such actors but excoriates, say, a Harold Shipman.)

The right to live

Frances Gibb:

"In 2008 my mother was in the last stages of Alzheimer's. Baroness Warnock, the moral philosopher, suggested at that time that such people could become a burden on society, and that those with dementia could be helped to die. By then my mother could do nothing for herself - she could not dress, eat or walk. Nevertheless, she was content and able to gain pleasure from small things: a song or a smile, a.cup of tea. She still had dignity at the end of her life and in death. That is achievable - and should be achieved - for the ‘living and partly living’, to quote T.S.Eliot, in preference to a dangerous way out that risks profoundly changing how we interact as human beings."

Taking as our context the lived experience, it does seem extraordinary to use failures of care and relief as an argument that getting rid of the problem means killing the sufferer instead.

Moreover, once again, it exposes all too clearly an ill-thought-through argument (unless, of course, such a perspective is naive, and it’s the opposite); because, naturally, it’s impossible to consider this matter properly, in isolation.

The risk of death

If a Warnock-style argument is to have any moral utility, it has to be applied, equally, to all such "burdens" on society. A top-of-the-head survey would obviously include neonatal intensive care, the disabled, those with special needs, including many of the neurodivergent (haven't we been here before? See above). And why not include people with any and all of the numerous conditions for which there is currently no definitive cure, but for which expensive treatment (which can lead to recovery) exists? The old? (Routinely referred to as hospital "bed-blockers"; "always" using services - to which they've made their social contribution, of course, but that tends to get lost in the overwhelming narrative.) Is this the kind of society we want to live in?

Kathleen Stock, the academic, writes of the importance of a society "where killing [isn't] cheaper than keeping someone alive or where the surrounding society [does] not excessively revile disability and old age." We appear to be rapidly moving further and further away from this.

The utilitarian, "burden" argument is a pernicious one; and, anyway, if there is a burden, it's one we've all agreed to share by living in society in the first place: the anthropological point of social grouping is to spread the load, maximising the benefits for the individual, whilst ensuring the general good of the many.

And who benefits here?

Cui bono

The question always asked in criminal law. This bill is addressing the perceived "needs" of a very small group within the wider society (which shouldn't necessarily preclude social change); but also taking a very particular and limited perspective - which clearly should, when the proposed changes have such potentially wide-reaching, destructive, irreversible ramifications for society as a whole. We're looking at Pandora's Box; the genie that can't be stuffed back into the bottle.

This is also an extraordinarily hasty bill: rushed out through a governmental lottery win, only weeks into a new government, under the aegis of an MP who has never, to date, shown any particular interest in this matter; but now offers the statement that she has "heard so many heartbreaking stories" as a response to questioning on a matter of such ethical complexity. Why is there such a hurry - which in itself raises disturbing questions - when, at the very least, this is a matter which requires considerable investigation and research before it could be even seen as appropriate to propose a bill? It really is an extraordinarily hasty bill: disturbing in its implications on many levels.

Edmund Burke said: "The people never give up their liberties but under a delusion."

There are some very well-meaning people, who don't seem to have looked very far ahead or very widely, advocating for a bill, extremely flawed in its framing; and extremely dangerous in its intentions and implicit ramifications.

Burke, as you know, also said: "It is a general popular error to imagine the loudest complainers for the public to be the most anxious for its welfare."

Good intentions, poorly thought through, shouting loudly, shouldn't be a premise on which to change a law - ethical, social, judicial - of such fundamental magnitude.

The primary necessity here is that this bill is discussed honestly and publicly under its actual terms - the reframing of permissions relating to death, between the state and the individual - and that the electorate is made fully aware that this is what is under consideration. Then, if the wider society is still interested: further discussion, investigation and modelling. Proposition and introduction of a bill is the final stage, not the first. It is not a hasty process.

The United Kingdom had a referendum - allowing everyone's voice equal weight - over whether to leave the European Union - a primarily economic association - which resulted in Brexit; the effects of which have been extremely far-reaching (and possibly not as envisaged by those voting for it). Surely we should also - at a minimum - have a referendum on a matter of ultimately far greater seriousness, and future social ramifications? Or are we saying that life and death - and state permissions in relation to these - are less important than money?

Edmund Burke (attrib.) Speech at County Meeting of Buckinghamshire, 1784; Observations on the late Publication on the Present State of the Nation (2nd ed., 1769); all other quotations The Times newspaper.

Frances Gibb, as you undoubtedly recognise, is quoting from Eliot’s Murder in the Cathedral, whose choruses contain much that's apposite to this discussion: “But now fear is upon us, a fear not of/ many/ A fear like birth and death, when we see birth and/ death alone/In a void apart.”…