Privileged supporters cannot seem to even understand the arguments against their case
The assisted dying debate has reached an impasse in recent months. Ever more nuanced concerns have been advanced by an ever wider range of stakeholders, only for advocates of the proposed legislation to parrot back the same arguments we heard at the start. “We are behind the rest of the world,” complained Kim Leadbeater again recently, as if assisted dying were a self-evident yardstick of human progress. Opponents are motivated by “undeclared religious beliefs”, added Esther Rantzen, for whom secular reservations are apparently inconceivable. Kit Malthouse, meanwhile, is still talking about drowning in faecal vomit, as if there were somehow a lobby in favour of this vanishingly rare phenomenon.
The inability to engage seriously with fears for society’s most vulnerable reflects a sad reality: that a chasm divides the bill’s proponents from those who stand to lose by it. It is an uncomfortable truth that enthusiasts of assisted dying are overwhelmingly middle class and privileged. This has been the demographic of every patient that has ever asked me or any of my colleagues about an assisted death, and is still more obviously that of prominent activists and politicians. These are people accustomed to very high degrees of personal agency, higher in fact than almost anyone has experienced in human history. Sadly — and though it may feel paternalistic to say so — we must also admit the existence of low-agency people. “This is about dignity and bodily autonomy”, Leadbeater reminded us again last week, but hers is a world view with little room for people who may never have experienced much of either.
The elderly, the disadvantaged, the disabled, and the mentally ill have all been highlighted as potentially vulnerable, but only a few legislative tweaks conceded by way of remedy. Identifying coercion by relatives, we are assured, is a simple matter of convening the right panel of experts — a claim that should exasperate any clinician who has tried to probe a reticent patient. Regardless of this, it is societal and institutional pressures that we should really worry about, especially given attitudes towards old age and chronic illness that already prevail. “Put me down if I ever get like that” has long been a commonplace injunction, but one only made by the fit and well, oblivious to the reality that almost everyone who has actually “got like that” wants to carry on living — something I discovered with surprise when I began practising medicine. Things that make life worth living might be fewer, smaller, constrained by disease, but are no less real for that. They can be degraded, however, by the implicit judgements of others: if enough people in the same situation decide they’re better off dead, belief in the value of your own life becomes harder to sustain, in ways the healthy can scarcely imagine.
When we turn to society’s least fortunate, it is still more difficult for others to grasp the complex interplay of physical, mental and social ailments that make them so vulnerable. Consider: a victim of child sexual abuse whose response was compulsive eating, leading to his being bedbound with morbid obesity and cardiorespiratory failure in his early forties; an intravenous drug user gang-raped on her council estate who struggles with adherence to HIV treatment; a man with learning difficulties who went blind after his eye surgery was cancelled during the pandemic, now forced by accelerating frailty into a nursing home in despair; a woman confronting the same inherited disease that killed her mother and grandmother, alone and poor after sacrificing her youth to their care; a young woman with advanced heart and kidney disease because, as an adolescent, her diabetic control was hampered by a chaotic home situation. I’ve encountered such patients almost daily in a decade of clinical practice, whereas I’m yet to see anyone “drown in faecal vomit”.
If the patients I’ve described requested an assisted death, you could make a very compelling case for it — which is precisely what makes them so vulnerable, and this legislation so dangerous. We instinctively feel that they can and should decide for themselves, but this is a fallacy of high-agency thinking. Instead, we should try to picture the hapless journey they might take to an assisted death as this service is taken up more widely.
To start with, all have mental health conditions, whether depression, anxiety, personality disorder, self-harm. These will not be cited as the basis for their application — that is proscribed by the legislation in its current form — but they are ever present in the background, aggravating everything else. On a bad day, such patients might express a wish to die, and thereafter suicidal ideation will be repeatedly, conscientiously checked for, with assisted dying in the mind of both patient and clinician. When the subject is broached, it cannot be without the demoralising implication that theirs might be a life not worth living.
They are not, at first, within the final six months of life, but they inevitably have a vast array of comorbidities, and it will not be long before that claim can plausibly be made. (Indeed, once assisted dying is available, the inequity of making them suffer longer will prompt challenges to this requirement of the bill.) Nor need mental capacity ever be in doubt, but these patients can still be fragile, labile, suggestible. Sometimes they’re not very nice. They might lack family or friends to advocate for them, and encounters with healthcare professionals are frequently strained. In dozens of informal, un-minuted conversations, they will be marked as “headed that way”. As their interest in assisted dying becomes more consistent, it will be impossible to measure the contribution of institutional momentum — something never to be underestimated in a system as monolithic, overstretched and managerialist as the NHS.
Safeguards have already failed these people, who have often been let down consistently from early on
These patients have complex health needs that require costly treatments and interventions. They have long admissions to hospital, during which they frequently consume more time, energy and resources than anyone else on the ward. In moments of frustration, the odd clinician has already inwardly wondered if keeping them alive is the right thing to do but, for now, professional reflexes are in their favour, to do no harm and keep trying. It is actually possible to improve such lives, even turn them around occasionally, but this requires expensive efforts by large multidisciplinary teams that are already hard to muster, and will be harder still when a more efficient remedy exists.
They will be protected by safeguards, it is claimed, but safeguards have already failed these people, who have often been let down consistently from early on, whether by family, community, institutions or the state. As a psychiatrist friend observed, an assisted death would just be “the cherry on the f—ing cake” that society has served them. And when they are gone, they will be even more invisible than they were in life: the data will bear witness only to the physical illness that qualified them for an assisted death, not the tangle of circumstances that led them there.
These are lives damaged through abuse, neglect, deprivation, loneliness. The question is whether death is a valid solution. If our MPs think so, they should state this baldly, and with the acknowledgement that patients like these exist in their millions. As for any children they might have, it is not fancifully dystopian to imagine how a “family history of assisted death” could be inherited along with other disadvantages as the modern equivalent of a gallows complexion.
Against all this, the purported benefits of assisted dying need to be weighed carefully. At the second reading of the Leadbeater bill back in November, endless anecdotes were offered, almost salaciously, of “agony” and “torture”, as if these were common or even normal in the final days of life. While it is true that some disease processes can be very cruel, they are a minority whose severity and prevalence have been grossly overstated in this debate. It has also been under-appreciated that distressing end-of-life experiences generally occur amid efforts to prolong life at the behest of patients — not through failures of palliative care, which are actually uncommon when services are adequately resourced.
It is easy to foster misconceptions, even among MPs. Ours is a society that keeps death out of sight in hospitals and nursing homes. Most people’s knowledge derives from just one or two experiences, and a single harrowing story tends to overshadow the reality: that most deaths occur undramatically, as the culmination of a period of deepening unconsciousness. My medical practice has taken me to parts of the world where death is less unfamiliar, something that occurs with the awareness — even in full view — of a whole community. In southern Africa, I have seen large groups gather around relatives who are dying, as most people there do, on the earth floor of a village hut. Westerners forget that death (and indeed birth) are natural processes which, for most of the world’s population, still occur as they always have done: without a doctor, let alone the extraordinary pharmacopoeia available here. I recall one Christmas Eve in a hospital in rural Malawi when half the ward died; but they could all be kept comfortable, even though palliative drugs were in very short supply. In recent months, former colleagues from less developed countries have expressed to me their bewilderment at why people in Britain — with comparatively plentiful access to healthcare — should be so frightened of dying that they seek to hasten it.
For all that MPs have congratulated themselves on the “quality of the debate”, clinicians I’ve spoken to have been dismayed by its callowness. Death and suffering have been discussed with great solemnity but no real sense of proportion. Disease has been envisaged in lurid, wide-eyed terms, as a rude intrusion at the end of lives that are otherwise comfortable and relatable. The messier experience of the vulnerable has been admitted but without much insight or interest, so that talk of safeguards has sometimes felt like a bromide to settle qualms about collateral damage. At the third reading of the Leadbeater bill, MPs need to think more rigorously about the gritty realities of assisted dying: about how they will be experienced across society, especially by people unlike themselves.
