The Adults (End of Life) Bill, Terminality, and the Right to Life

The Terminally Ill Adults (End of Life) Bill has been described by many as one of the most significant shifts in the legal landscape of England and Wales in our generation. Whether this claim overstates the matter is open to debate. What is not in dispute, however, is that the Bill raises profound questions about the relationship between the state and those it governs. Unsurprisingly, its existence, proposals, and suggested amendments have generated extensive discussion and controversy. In this blog series, leading voices in the field of assisted dying reflect on the Bill, what it means for the state to sanction the deliberate and knowing ending of an individual’s life, and how we might tread a path forward.

Nataly Papadopoulou, University of Leicester

Keywords: Terminality, Right to life, Article 2 ECHR, Prognosis

It is a busy time for end-of-life researchers, especially those working in the area of assisted death. Constitutional challenges, amendments to established legislation, new legislation… But it is not one for just the lawyers; there is an admirable political, public, and healthcare drive to (finally and seriously) confront the reality of assisted death. The need for legislation is undisputed (at least for some of us); the focus now is on how we can do this in a safe and accessible manner. To me, this is where we are in England and Wales with the Terminally Ill Adults (End of Life) Bill (‘TIAB’) currently before the House of Lords. Whatever the fate of this Bill, which arguably seems grim, there will be another one coming, and we need to be more prepared for it. I have thought hard about how best to use this short blog. Most of my work in the area has focused on human rights and their role (via domestic and international Courts) on end-of-life practices generally. But, in light of my point just now that the focus is now on the how question, I will combine in this blog rights and one of the key access criteria in this (and other) legislations, specifically terminality and its link to the right to life.

I should start by saying that the access criterion describing the condition of the individual is one that attracts considerable debate across permissive jurisdictions, and I even dare say the one for which most divergence in approach can be noted. In very general terms, jurisdictions choose between terminality and suffering (the latter may or may not include mental suffering), or a combination of the two, depending on legal, societal, and political idiosyncrasies. The TIAB currently requires in Section 2 that the person has ‘an inevitably progressive illness or disease which cannot be reversed by treatment’ and that ‘the person’s death in consequence of that illness or disease can reasonably be expected within six months’. There are additional provisions about treatment that temporarily relieves symptoms, disability, and mental disorder, with these requirements assessed by medical practitioners and confirmed, among other things, by the proposed Assisted Dying Review Panel, which replaced the High Court in the original version of the Bill. The Bill has been described by its promoter, Kim Leadbeater MP, as the strongest and strictest in the world, mirroring the language used in Victoria, Australia, as ‘the safest, and most conservative model in the world,’ with 68 safeguards incorporated at the time of its passing. As other colleagues have expressed in this series of blogs, I am also concerned about the balance between safety and access. But in this blog, I want to discuss how access is restricted by the TIAB’s terminality requirement, focusing on prognosis and the potential risks for individuals excluded by it using Article 2 and the right to life.

The first point to note concerns the timeframe requirement. The Bill, modelled after the Oregon Act, requires a 6-month prognosis, which is the strictest version of terminality seen currently in permissive jurisdictions. The clinical literature shows that an accurate prognosis is difficult and rarely accurate, even with the use of various prognostic tools by healthcare professionals. In that regard, choosing a 6, 12, or longer prognosis may lead to similar concerns around uncertainty for both the patient and the healthcare professional. A solution adopted now by jurisdictions such as Scotland (see the current Bill under consideration), or the latest Australian legislation (Australian Capital Territory), is a no-timeframe requirement. This may potentially bypass some of the issues, assuming that we trust and defer some of the responsibility, as we should, to healthcare professionals. Such a criterion, without a timeframe requirement, would still be about those already dying—as Leadbeater MP described it during the TIAB’s Second Reading in the House of Commons; ‘we are not talking about a choice between life or death; we are talking about giving dying people a choice of how to die’. Before the Commons, various approaches to prognosis were discussed, ranging from its complete removal to its extension to 12 months, including discussion of neurodegenerative conditions and whether they warrant a longer prognosis (see the approach in Australia, and recently in Jersey - British Crown Dependency). In its current version, the TIAB’s requirement for a 6-month prognosis is restrictive and does not acknowledge clinical or patient reality.

The terminality requirement, especially as it concerns prognosis, could be challenged on the basis of discrimination and exclusion; here, I make a different argument, one that Liz Wicks and I have discussed elsewhere. This narrow approach would not only mean that those not eligible will still look to access this choice abroad or turn to unregulated, amateur practices in this jurisdiction, but also that all this can be done earlier than planned. There is evidence of this in this jurisdiction and in other jurisdictions, including Canada. Specifically, that the right to life was engaged was accepted in Carter v Canada (Attorney General) [2015] 1 SCR 331, the Supreme Court of Canada accepting that the prohibition of assisted dying meant that some people may choose to die earlier than they would, compared to if a domestic framework were in place. Before the English Courts, this argument has not been given the attention it deserves. While Mr Nicklinson’s argument, that the lack of regulation means that ‘covert, unregulated, and amateur assisted suicide and euthanasia’ take place without safeguards, was broad in nature and refused, Mr Omid’s argument, even framed in much narrower terms, was not pursued further because of his assisted death in Switzerland. It was continued by Mr Newby in 2019, Irwin LJ in the High Court refusing permission because the Court ‘is not an appropriate forum for the discussion of the sanctity of life’. Questions around state obligations are likely to arise, for instance, if individuals excluded by the TIAB die earlier than planned abroad, or if they put their lives at risk in this jurisdiction (say by attempting suicide). Courts will then have to decide whether there is effective regulation to protect life, as well as whether preventive operational measures to protect an individual whose life is at risk should have been in place. So terminality is likely to be challenged, and it could even be challenged via the right to life, under a creative legal strategy.

To sum up, it is very likely that non-terminally ill individuals will still attempt to access an assisted death, not by means of the law (which will exclude them) but using other means domestically or abroad. This could raise questions on the positive state obligation to prevent suicide, and the appropriateness of the proposed legislation. The issues around prognostication, of course, remain and are unlikely to go away, indicating that the access criterion on the physical condition of the individual is far from an ‘agreed’ clause. The TIAB has already achieved a great deal: it has brought end-of-life issues to the forefront, it has reminded us of the role of activism, the need of campaigning and the power of individual testimonies, the political will to seriously consider the subject, but also the struggles of our healthcare system (including the hospice sector), the difficulties faced by individuals at the end of life, and how necessary this debate is to bust myths, and help us to open up about our dying preferences, our values and choices about the end-of-life, on assisted dying and beyond.