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Current proposals that would allow assisted dying in Jersey outside cases of terminal illness are “not ethically appropriate”, according to an expert review. Express takes a closer look at their findings...
The publication of an ethical review of assisted dying in Jersey marks the final step before Ministers work to refine the proposals that will come before the States Assembly in March 2024.
However in the report, three specialists have expressed "serious reservations" about allowing assisted dying in cases of "unbearable suffering", as the proposals currently stand.
Current proposals allow the procedure via the basis of terminal illness (Route 1) and of "unbearable suffering" (Route 2), both of which would have different approval processes and timeframes.
Pictured: A person with an incurable physical medical condition that is causing "unbearable suffering" that cannot be alleviated is eligible for assisted dying under current proposals.
Health Minister Karen Wilson said: "This review has helped to cast light on a range of complex ethical issues, some of which were already in our minds.
"It has given us some clarity around areas where we might need to do more thinking around safeguards. It is clear that Route 2 is a far more complex area of the legislation."
Deputy Wilson also confirmed that assisted dying in Jersey would "absolutely, categorically be for Jersey residents only".
She added that the Council of Ministers remained committed to the original timeline of legalising assisted dying by the end of 2025.
Pictured: Deputy Karen Wilson committed to the current timeline of legalising assisted dying in Jersey by the end of 2025.
Professor Richard Huxtable, Dr Alexandra Mullock and Professor Trudo Lemmens – medical experts who were previously involved in the Jersey Assisted Dying Citizens' Jury – considered a range of arguments and evidence for and against particular answers to questions surrounding assisted dying.
In response to Route 2, the authors wrote: "We have serious reservations about allowing AD [assisted dying] in such circumstances and on balance we believe that the proposals regarding Route 2 (unbearable suffering) are not ethically appropriate."
While they acknowledge that suffering can arise in "contexts beyond terminal illness", the "substantial arguments" against that route including making an ableist judgment about the negative value of lives of people with disabilities, and that "suffering" is "too vague, multifaceted and subjective to be a useful or reliable eligibility criterion".
Pictured: Jersey's States Assembly became the first parliament in the British Isles to decide that assisted dying should be permitted 'in principle' in 2021.
The Council of Ministers is preparing to lodge proposals for debate by the end of March next year, with the intention to debate before the end of the summer. This follows a vote by States Members of 36-10 in favour of the principle of assisted dying in November 2021.
However, the report maintains that the consultation phase is not yet complete, and the authors have suggested that the views of Jersey-based doctors could be sought again "to ascertain levels of support for assisted dying as proposed and their willingness to participate in assisted dying as proposed".
Pictured: The views of Jersey-based doctors could be sought again "to ascertain levels of support for assisted dying as proposed and their willingness to participate in assisted dying as proposed".
Alongside other ethical debates on whether healthcare professionals should be able to conscientiously object and whether it should be self- or practitioner-administered, the report also supports the principle that assisted-dying legislation should not be brought into force until the Assembly is satisfied that all islanders can access good palliative and end-of-life services.
In April, the Council of Ministers agreed that the current assisted dying proposals should be further informed by specialists with a background in medical ethics and law.
This external review sought to identify the ethical and moral considerations around assisted dying, including those raised in the responses to the public consultations carried out in Jersey over the past year.
In the report, the three specialists worked from the basis of the States Assembly's 2021 "in principle" decision that assisted dying should be permitted in Jersey.
It focused on the how, and not the question of whether, to allow assisted dying, scrutinising the current proposals and considering a range of arguments (and evidence) for and against the answers to a series of questions.
Adopting this would avoid Jersey becoming a "suicide/death tourism" destination, the authors argued, and "has the most support amongst consultation respondents."
The authors wrote: "We suspect the case for restricting access to residents is stronger, and the States Assembly should also reflect on the appropriate duration of residency (currently proposed at 12 months)."
On balance, the authors believe that AD should be restricted to adults. Minors lack autonomy and need protection, plus there are low rates of uptake and controversy where the law does allow it in other jurisdictions.
"But, if AD for children is to be considered, the views of children themselves would need to be sought," the authors wrote.
The authors did not agree with the presumption of capacity.
Rather, they suggested that AD proposals would include a specific legal test for capacity, which is consistent and robust, plus accompanying tools and guidance.
The authors wrote: "Given the arguments for and against doctors' involvement, we welcome the plans to seek to address/ameliorate the concerns of opponents by including a conscientious objection clause and ensuring there is a good level of access to palliative care.
"On balance, total de-medicalisation does not appear to be ethically defensible. Partial de-medicalisation has some benefits but some level of medical involvement and State provision is likely to be needed."
The authors have also suggested canvassing views of doctors and healthcare professionals before finalising the proposals.
The authors agreed that it was appropriate to have different approval routes for Route 1 and Route 2.
In Route 1, two doctors must approve, while in Route 2, two doctors plus a Tribunal must approve.
The authors also suggested that Ministers should consider how best to ensure the independence of the two doctors and that both must come from the Jersey Assisted Dying Service.
The authors wrote: "We believe that imposing specific, and distinct, minimum timeframes is appropriate, for the reasons given in favour, and that there is a case for treating the two Routes differently, such that it should be plausible to defend any charge of injustice, inequality or inequity.
"We emphasise that these should be considered minimum timeframes, in view of the gravity of the decision and the need for caution regarding any form of AD.
"However, given our serious reservations about Route 2, we find it harder to conclude on what would be a sufficient and appropriate timeframe for Route 2."
The timeframes would be 14 days for Route 1 and 90 days for Route 2.
The authors wrote: "Healthcare professionals should have the right to conscientiously object to direct participation in AD, not least because AD is a controversial practice, which does not serve the usual aims of medicine to heal/cure."
Rather than requiring referral to a named provider, objectors could direct patients to general information about services.
The authors overall agree that, at least for Route 1, the law should neither require healthcare practitioners to initiate AD discussions with potentially eligible patients nor prohibit them from discussing AD.
"If Route 2 is to be allowed, then there is a case for adopting a 'gag clause' in this context."
"We suggest that self-administration with practitioner monitoring may be the safest option if some form of self-administration is to be allowed in law and we note with approval that this is currently envisaged. Alternatively, practitioner-administration may be a preferred model.
"It may be appropriate to provide for both modes in law, with patients offered the choice of mode – and this would be consistent with respect for patient autonomy, which is presumably one of the goals of creating an AD law."
"The arguments for clear, consistent and accurate reporting appear to be strongest and, alongside explicitly recording AD, we are reassured that current proposals include provision for clear guidance and training for those completing the MCFCD.
"However, efforts may also be needed to gauge and address the potential concerns of patients and families."
The authors agree with the right of appeal to Royal Court for eligible (proximate) stakeholders.
You can read the full ethical review online HERE.
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