by Colin Gavaghan, Professor of Law, University of Bristol Law School
The debate around the latest assisted dying bill – Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill (TIA Bill) – has taken some unexpected turns. The usual arguments around choice and safety, the sanctity of life and dignity in death, have been supplemented by a range of procedural concerns. Some veteran MPs have even expressed the surprising argument that their new colleagues are too inexperienced to fully understand a matter of such importance. On the face of it, this is a remarkable claim; as Hannah White and Jill Rutter wrote in an article for the Institute for Government, ‘being willing to use one’s personal judgement to decide matters of national importance – without the comforting guidance of the party whips – is a core competence for the role.’
That same Institute for Government article, though, expresses concern about some other aspects of the TIA Bill’s introduction. Specifically, the authors argue, the Bill ‘would have benefited enormously from a more thorough preparation phase.’ They argue that
a well-led review, involving many of the people on both sides of the argument, and with a mandate to engage the public, could have addressed the whole range of issues that MPs are now trying to navigate.
It could for instance have ‘explored the international experience’ and ‘what the implications would be for the NHS,’ as well as ‘eligibility criteria.’
I profess no expertise on matters of parliamentary procedure (though Ian Dunt’s book on the subject certainly left me with doubts about the level of legislative scrutiny in the Commons.) I’m certainly not in a position to reject out of hand the concerns of people like White and Rutter. I do, however, know a thing or two about assisted dying law. And I think we should be rather sceptical about any suggestion of vast gaps in the sort of information available to MPs this week. In particular, two recent and detailed reports shine considerable light on the sorts of questions White and Rutter – rightly – consider important.
Health and Social Care Committee Report
In February 2024, the House of Commons Health and Social Care Committee published its report on Assisted Dying/Assisted Suicide. This 126-page document set out the findings from the Committee’s 2023-24 inquiry. As well as receiving ‘over 68,000 responses to our online form, and over 380 pieces of written evidence’, the Committee held ten roundtable discussions. Those included discussions with healthcare and social care professionals from specialities including palliative care, hospice care and psychiatry, and with people with first-hand and second-hand lived experience of AD/AS.[1]
As you’d expect from a 126-page report, there is a lot of content here, but some key take-aways for me included the following.
Palliative care
The Report heard evidence that ‘The UK has long been a world leader in palliative and end of life care, but access to and provision of palliative and end of life care is patchy.’ It recommended that ‘The Government must ensure universal coverage of palliative and end of life services, including hospice care at home.’ However, regarding concerns that permitting assisted dying would lead to a decline in provision, the Committee ‘did not see any indications of palliative and end of-life care deteriorating in quality or provision following the introduction of AD/ AS; indeed the introduction of AD/AS has been linked with an improvement in palliative care in several jurisdictions.’
International experience
The Committee noted that those jurisdictions that have allowed AD/AS can be divided into two categories: those that limit provision to terminally ill people (17 jurisdictions), and those which extend eligibility to non-terminal cases (9 jurisdictions). The Committee found ‘that jurisdictions which have introduced AD/AS on the basis of terminal illness have not changed the law to include eligibility on the basis of “unbearable suffering”.’
Of course, this does not prove conclusively that eligibility will not widen, either in those countries or in the UK, should we elect to follow their example. But it is surely worth noting that loosening of eligibility criteria so far seems to be the exception rather than the rule.
The New Zealand review
One of the jurisdictions that has limited eligibility to terminal cases is New Zealand. The Ministry of Health (Manatū Hauora) has just published a report on the first three years of the End of Life Choice Act 2019, an obligation required by the terms of the Act itself.[2]
The report bears some close attention. While much of the media debate has focused on developments in Canada, the EoLC Act is far closer to the TIA Bill. Substantively, it limits accessibility to those who are terminally ill with a condition likely to end their life within 6 months (s.5(1)(c); Clause 2(1)(b) of the TIA Bill uses the wording ‘can reasonably be expected within 6 months.’)
Procedurally, too, the progress of the NZ law is a closer approximation to the UK situation than either are to Canada. Very briefly, the Canadian situation is the product of a combination of court cases and legislative reform. The Canadian Government’s response to the decision in Carter was to permit assisted dying, but only in cases where death was ‘reasonably foreseeable’. But a subsequent decision in Truchon deemed this too restrictive and this resulted in further legislation that removed this and other barriers to eligibility.[3]
In contrast, New Zealand courts have – like their UK counterparts[4] – rejected human rights challenges to the ban on AD/AS. In the leading New Zealand case of Seales v Attorney-General, Collins J held that
The changes to the law sought by Ms Seales can only be made by Parliament. I would be trespassing on the role of Parliament and departing from the constitutional role of Judges in New Zealand if I were to issue the criminal law declarations sought by Ms Seales.
And it was via the legislature that the change resulted, albeit that its final acceptance had to be secured by the results of a referendum. There was no question of the law having to satisfy the terms of a court ruling, because there had never been any such ruling.[5]
So what has the New Zealand report concluded? A few points stand out for me. The top line finding is that the Act ‘has largely been operating well, and has achieved its primary purpose of giving people with a terminal illness who meet certain criteria the option to request and receive medical assistance to end their lives.’ Significantly, ‘The Ministry is confident that everyone who has received an assisted death met the eligibility requirements set out in the Act and had chosen an assisted death.’
More than 2,400 people have requested an assisted death, and more than 970 have received an assisted death since the Act came into force on 7 November 2021. This represented 0.8% of all deaths in New Zealand, though the numbers of applications have risen each year and are projected to continue to rise at around 11-13% per year. Applicants were mostly ‘NZ European’ (80%) and evenly split between genders. Around 80% were aged over 65. The most common diagnosis was cancer (70%) and most were receiving some form of palliative care at the time of application (76%).
While the Act in general is operating well, some of the safeguards built into it are not functioning as intended. For instance, the report found that ‘The requirement on practitioners to “do their best” to detect pressure is unusual and unclear.’ This requirement is mirrored in the TIA Bill which requires the assessing doctor to ascertain that the applicant ‘has not been coerced or pressured by any other person into making it.’ (Clauses 7(2)(g) and 8(2)(e)).
Many doctors are already familiar with capacity assessments, even in end-of-life situations, but ‘pressure’ is not defined legally, and could suggest different things to different people. Difficulties experienced by doctors charged with understanding and discharging this responsibility are therefore worth taking seriously. As Emily Jackson has argued, a ‘rush to include ever more safeguards’ can, if not done carefully, make the process more cumbersome and confusing without offering meaningful protection.
Concerns were also expressed about the capacity and training of practitioners, with some involved in the process being inexperienced and lacking relevant training. The report also points to a lack of support for those practitioners who are involved in the process, noting that ‘while this work can be personally fulfilling, it can also be isolating and emotionally draining.’
Finally, the report tells us that ‘[p]eople accessing assisted dying and their family or whānau, particularly people who have been found ineligible, need more support.’ I found this particularly interesting, as the needs of people who have their applications for AD declined has not featured much in discussions of this issue.
These highlights are necessarily subjective, and I would urge anyone with an interest in this topic – and in particular those charged with legislative responsibility for this area – to read at least the executive summary. There are of course certain caveats. The legislation has only been in effect for 3 years, which is not a long time to make a thorough evaluation of its functioning. Furthermore, the EoLC Act differs in certain important respects from the TIA Bill. Significantly, the EoLC Act does not require judicial confirmation that the statutory criteria have been satisfied. This might be thought to provide an additional safeguard to the TIA Bill, but it has also been suggested to raise concerns of principle and practicality, including placing new demands on already over-stretched courts.
Most obviously, we are talking about different countries with different (though in many ways similar) cultures and systems. It would be a mistake to assume that New Zealand’s experience will be mirrored in England and Wales should the TIA Bill become law. But if our current debate is to be informed by the experience of other jurisdictions – as it surely should to some extent – then this is a valuable source of information about a very similar piece of legislation.
Conclusion
Although there may be deficiencies with the process by which the TIA Bill has been introduced, it is not the case that MPs are being expected to decide in an information vacuum. On the contrary, they have at their disposal a great quantity of recent evidence and opinion. Some of it comes from jurisdictions that have already done something similar to what is being proposed. Some of it comes from a variety of stakeholders with a variety of perspectives and experiences. Reasonable people will differ on whether this information is reassuring or worrying, and indeed, the extent to which it is relevant to our present situation at all. But it certainly exists, in substantial quantities.
If MPs genuinely still feel under-informed on some aspect of the issue, it is important that they make this clear. It may be that the information they lack is already out there, and can be brought to their attention. If not, it will clarify the further steps needed to allow them to make an informed decision. There is a concern, though, that a generalized demand for ever more information could become something of a soft option, allowing MPs to kick the issue down an indefinitely long road without ever having to take a position on it.
(With thanks to Isabella Lewis and Annie Sheldon for their helpful comments.)
[1] If, like me, you’re wondering how anyone can have lived experience of assisted dying, the report defines this as ‘seeking or campaigning to access AD/AS for themselves.’
[2] You may have noticed that 2019 to 2024 is actually 5 years and not 3. The EoLC Act came into being by a circuitous route, with a referendum following its successful passage through Parliament, and then a further year’s delay before the Act came into force in 2021.
[3] For those interested in an explanation of the Canadian situation that is not chopped down to blog size, this legislative background document provides far more detail.
[4] For a recent and thorough overview of the law in England and Wales, see Sally Lipscombe, Joanna Dawson, Elizabeth Rough. The law on assisted suicide. (April 2024)
[5] Whether a law restricting AD/AS to terminally ill people could ever be the subject of a successful human rights challenge – specifically on the basis of discrimination – has been the subject of an intriguing recent exchange; see here and here. Nonetheless, the fact remains that the E&W and NZ courts have to date not upheld any such challenge, a point of significant departure from the courts in Canada.