Time to rethink assisted dying?

Abstract

I wrote some years ago in these pages that the ethical debate on assisted suicide and euthanasia is essentially settled in favour of these practices.1 The number of jurisdictions, not only in the global north, but also in the global south, that introduce assisted dying in some form or shape has since continued to increase, and no attempts have been made to reverse such policy changes. Addressing dire warnings about slippery slopes in this context has turned into the academic equivalent of whack-a-mole type writing. When one claim about a supposed slippery slope has been debunked, a variety of it pops up just around the corner.2 If it wasn't for the ominous reason why Sisyphus was punished by the gods, one could be tempted to describe the task of debunking slippery-slope writings in the context of assisted dying as a Sisyphean task. Very high public support for assisted dying, that remains remarkably stable over time, and across jurisdictions, could be interpreted as the public seeing right through this slippery-slope mongering, or, perhaps more disconcertingly, most people do not care about the truth or otherwise of these arguments.

The academic and policy debates have rightly moved on from the more traditional philosophical ruminations about the ethics of euthanasia to three other issues: (1) scope, and eligibility thresholds, that is the question of who should be eligible to access an assisted death; (2) the problematic issue of advance directives; and (3) the role of healthcare professionals in the provision of assisted dying.

Let me reconsider here primarily the first, and very briefly the third issue. They have become the focus of sustained debate in jurisdictions that consider introducing assisted dying, as well as in countries that have restrictive eligibility regimes and face pressures to consider more permissive regulations. Historically, assisted dying lobby groups and their academic allies have focused on the paradigmatic terminally ill person experiencing uncontrolled pain.3 Terminal illness is today a common access threshold that, on closer examination, is difficult to defend as a necessary condition. There are a few jurisdictions where terminal illness isn't a necessary condition to become eligible for an assisted death, but they remain in the minority. The main reason, I suspect, for why terminal illness—usually understood as being within 6 months of natural death— is a common access threshold is the view that even if someone may have made a mistake in asking for, and receiving, an assisted death, they lost comparably little, given their impending demise. The same cannot be said for people who request an assisted death who are not dying imminently. What if they are mistaken in their decision? It is arguable that decisionally capable people, who aren't terminally ill, have an even stronger autonomy-based case to access assisted dying. The reason is that those whose intractable condition renders their life—in their own considered judgement—worse than death, are in a worse situation than those who are imminently dying, because they are faced with living a much longer life of misery, if access to a requested assisted death is denied. The late Koku Istambulova, at the time reportedly the oldest living person, went on record saying that ‘life is a “punishment”, and that she has not had a happy day in 128 years’.4 Of course, it is always possible that someone's life circumstances improve, and if one isn't terminally ill, the risk that someone would have regretted their decision to request an assisted death is not negligible, but the ethical question that arises here is this: Who should be the decider in such a situation? Unsurprisingly, those opposed to assisted dying stand ready to declare that they should make this decision on behalf of the decisionally capable person. Taking away decisionally capable people's agency under the guise of professed concerns for vulnerable people is popular today. I tend to think that it should be our prerogative to decide for ourselves.

Terminally ill patients experiencing unbearable pain and suffering exist, but nearly half of those requesting an assisted death are otherwise motivated.5 For instance, people with non life-shortening disabilities sued for their right to an assisted death.6 This matters a great deal for discussions about eligibility thresholds, because most jurisdictions' criteria include vague standards such as unbearable or intolerable suffering where someone seeking an assisted death has to prove to third parties how intractably bad their situation really is. While there is some intuitive appeal to such criteria, there is also no fact of the matter to this. Individuals have justifiably different views on what they consider unbearable or intolerable, and in reality someone with decisional capacity, who requests an assisted death, has already decided that continuing existence is worse than death. ‘Unbearable quality of life’ criteria add no value to that determination. Most jurisdictions that grant access to an assisted death to decisionally capable people, who are not terminally ill, have added a waiting period sometimes of several weeks or even months, while at the same time insisting that those waiting declare they suffer unbearably. Assuming it is truly suffering that is of an unbearable nature (as a limiting access threshold), is it ethically defensible to demand that people suffer unbearably for weeks or months to prove themselves worthy of access to an assisted death? Surely, if they can handle the suffering for that long, they are probably not suffering unbearably.

Among real-world patient motives that feature reportedly prominently is the fear of losing one's independence, worries about being a burden on one's loved-ones, and other concerns that are unrelated to the uncontrolled pain or suffering criteria. It is not the case that people expressing such views are necessarily particularly socio-economically vulnerable, as the case of Bruce de Wert illustrates.7 The 69-year-old Scottish solicitor travelled on his own accord to Switzerland to receive an assisted death. He suffered from a severe form of multiple sclerosis and decided to end his life, partly because ‘he had not wanted to end up in care or his wife to be forced to look after him.’ In days gone by, such views have received philosophical backing.8

I think it is reasonable to question whether anyone should have to be concerned about such issues and whether a good society ought to provide better support services, but in the real-world, these questions should be for the autonomous individual to decide, not for society or others who have decided that they know better than those actually affected.

Should it matter whether the intractable condition that renders someone's life worse than death, in their own considered view, is disease-caused or other-caused? It is uncontroversial that it can't be an intractable condition that renders someone's decision to request an assisted death substantially nonautonomous, but otherwise, why should it—morally—matter whether the cause is illness based or other based? The morally relevant features here seem to be that whatever causes a decisionally capable person to decide that their continuing existence is worse than death is intractable at the time of decision-making and it isn't of a kind that renders the decider nonautonomous.

In jurisdictions where suicide is legal, at a minimum, assisted suicide should also be legal. It isn't plausible to maintain that we have autonomy rights to control over own body, which entail the right to decide the time of our death, but insist that nobody may volunteer to assist us in making use of said right. More plausible is that we ought to create regulatory frameworks that permit such assistance by trained professionals that protect our safety and security. The latter values are rightly part of the raison d'etre why we have states and governments in the first place. Consequentialists will note at this juncture, with good justification, that the right to an assisted suicide, provided by volunteering trained professionals, discriminates unfairly against otherwise eligible people who are unable to end their lives themselves due to disability or other reasons. Ergo voluntary euthanasia should be an available alternative to assisted suicide. There is another reason for this, reportedly euthanasia is a more reliable means to assist someone in ending their lives than assisted suicide. It's why Canada, for instance, regulated that a doctor must be available during assisted suicide attempts, ready to provide euthanasia if death hasn't occurred after an agreed-on period of time.9

But who should be tasked with the provision of such services, given that it would no longer be the case that only people defined as patients would be eligible for an assisted death. Healthcare professionals might object to providing such services to people who aren't patients. Different societies could decide to introduce permissive assisted dying regimes tasking different professionals with the provision of such services. If doctors are the profession tasked with the provision of such services in a particular jurisdiction, they ought to provide it to those eligible in that society.10 However, it is worth considering whether a newly created assisted dying profession, that is equally tightly regulated, may be a preferable way forward.

Let me acknowledge that these issues are complex and require further analysis, more than can reasonably be provided in this short editorial.11 Other writers have already started to give thought to this.12

We invite the journal's readers to contribute their considered content for review! We are looking forward to the conversation.