Jersey Ethics Report - Societal Change due to Assisted Dying law (FOI)

​​Request

Recently there was a Danish Ethics Council Report examining the ethics relating to the legalisation of Assisted Dying in Denmark.

The Danish Ethics Council had 17 members, 16 of whom were opposed to Assisted Dying. Only one member of the Danish Ethics Council recommended that a thorough investigation be undertaken. 

A few of their recommendations were:

• it is in principle impossible to establish proper regulation of euthanasia, and therefore recommend that euthanasia not be legalized in Denmark
• they do not believe that legislation can be developed which will be able to function properly. The only thing that will be able to protect the lives and respect of those who are most vulnerable in society will be an unexceptional ban
• the members point out that euthanasia risks causing unacceptable changes to basic norms for society, the health care system and human outlook
• the very existence of an offer of euthanasia will decisively change our ideas about old age, the coming of death, quality of life and what it means to take others into account.

The recent Jersey Ethicists Report was restricted to examine within the parameters of questions presented to them by the Jersey Health Minister, whereas the Danish Ethics Council Report was an open ethical unrestricted assessment. The Jersey Ethicists raised significant concerns to the present proposals particularly Route 2 (unbearable suffering in Chronic Illness in those not having a terminal illness). They also recommended seeking the views of Jersey medical professionals and those with disabilities.

A

The three Jersey ethicists producing the report are known to be in favour to some degree and there was no ethicist included who was opposed to bring a balanced range of views. How were these ethicists chosen and why wasn’t there a more balanced representation. Who was responsible for the choice of ethicists and which States Department was responsible for this?

B

What consideration has been given by the Policy Team and those involved in examining the possible adverse societal effects, referenced in the Danish Report, as to the ‘unacceptable changes to the basic norms for society, the health care system and human outlook’, and ‘our ideas about old age, the coming of death, quality of life and what it means to take others into account.’?

C

Following the recommendations of the Jersey Ethicists report, what has been done to seek further the views of medical professionals and people with disability, and if done what numbers of people in these groups have been consulted?

Response

A

The Assisted Dying in Jersey Ethical Review was commissioned by the then Minister for Health and Social Services (Deputy Karen Wilson).  

The authors of the ethical review were selected:

• for their subject expertise 
• for their range of personal positions on assisted dying, which includes both support for, and opposition to, different elements of assisted dying practice (note: none of the three are directly opposed to assisted dying in all its forms as the Assembly had already decided, in principle, that assisted dying should be permitted in Jersey)
• as all were previously involved in the Jersey Assisted Dying Citizens’ Jury.

The Review documents sets out their personal positions on assisted dying: 

• Huxtable is in favour of adopting a “middle ground” (or compromise) position on assisted dying, which seeks to accommodate arguments for and against allowing assisted dying 
• Lemmens has supported (including as an expert witness in litigation) a first Canadian law which allowed euthanasia and assisted suicide in a broad end-of-life context. He has become increasingly concerned about how assisted dying regimes develop over time, particularly when they allow direct administering of lethal medication by health care providers and have no specific terminal illness and prognosis of survival as safeguards. He is opposed to legalising the practice outside a clearly delineated end-of-life context and is concerned about the overall ability to monitor the practice.  
• Mullock is broadly in favour of assisted dying as a compassionate response within a carefully regulated scheme that safeguards individuals who might be regarded as vulnerable if assisted dying is permitted.  

The preamble to this request makes reference to the Danish Ethics Council stating that it had “17 members, 16 of whom were opposed to Assisted Dying”. The Danish Ethnics Council report does disclose that 16 members of the Council, having considered the issue of assisted dying, believe it is not possible to properly regulate assisted dying, but the report does not disclose the views of the 17 members towards assisted dying prior to undertaking the review, hence the matter of balance cannot be determined.

B

​Consideration of assisted dying – Denmark and Jersey 

In Denmark on 29 May 2023, a ‘citizen’s proposal’ petition, achieved c.50,000 supporters. Following this, the Danish Parliament’s Health Committee instructed the Council of Ethics to issue a statement on ‘active euthanasia’. The work carried out by the Ethics Council focussed on 2 areas: 

• a review of the most significant ethical arguments for and against euthanasia
• a presentation of the most significant features of two different models for euthanasia, as implemented in Oregon and the Netherlands respectively.  

The policy development process in Jersey for developing assisted dying proposals has involved significantly more extensive consultation and engagement, including: 

• a Citizen’s Jury (a method of deliberation, where a small group of people, representative of the demographics of a given area, come together to carefully consider the practical, ethical and moral dimensions of a complex issue) 
• a States Assembly ‘in principle’ debate on assisted dying
• establishment of a Professional Leads Working Group
• 2 phases of public consultation
• ethical review of proposals for assisted dying in Jersey (the report authors were asked to identify and summarise ethical arguments on key aspects of assisted dying and to map the ethical considerations across the Jersey-specific proposals)
• consideration of experience and expertise in jurisdictions where assisted dying is currently permitted. 

Consultation and engagement on assisted dying – wider societal impact 

​The first phase of public engagement took place between March and April 2022 and asked Islanders to ask questions or share their hopes, thoughts or concerns around assisted dying. A summary of public responses was published on 5 May 2022. This noted key themes that arose which, in some cases mirrored the themes raised in the Danish review including: 

• the tensions of the duty of doctors to both prevent suffering and sustain life 
• cultural and societal pressure for an assisted death. 

Phase 2 of the consultation asked the public and stakeholders to respond directly to proposals for assisted dying in Jersey. The survey questions in the consultation focused on the detail of the proposals, not the wider ethical and moral dimensions of the principle of assisted dying. However, many consultation respondents chose to provide their views on these wider ethical and moral dimensions. This feedback was reflected in the Phase 2 consultation feedback report and included feedback on the pressure to end life and the protection of vulnerable people, noting that “some responses which voiced concerns that the introduction of assisted dying may shift societal views on death, older adults, disability and even the inherent value of human life.” 

This consultation feedback, alongside all other elements of the policy development process as outlined above, have shaped the proposals that were presented to the States Assembly in the Report and Proposition lodged on 22 March 2024.

​C

Views of medical professionals 

The Ethical Review:

• acknowledges that specific consultation has already been undertaken with Jersey-based health care professionals during Phase1 and Phase 2 of public consultation (see page 46), in addition to research undertaken by End of Life Choices
• refers to evidence of both support and opposition to assisted dying from Jersey-based doctors and other health and care professionals (see page 45)
  
• recommends that: “once detailed proposals have been refined, the views of Jersey-based doctors could be sought again (e.g., via a survey or other means), to ascertain levels of support for AD as proposed and their willingness to participate… further consultation on the specific proposal before it is made law would help to indicate the extent to which non-Jersey doctors (or other HCPs) may be needed.”  

The Report and Proposition lodged on 22 March 2024 takes that recommendation into account and notes that an in-depth survey with Jersey-based health and care professionals will be undertaken once the detailed proposals have been confirmed by the Assembly and prior to debating the draft law.  

Views of disabled islanders 

The Ethical Review notes (page 47) that: “the views of people with disabilities have already been sought, including in dedicated consultation meetings, which were run in collaboration with Enable Jersey, a charity that supports islanders with disabilities and promotes equality and the rights of such persons”  and then goes on to state that “it would seem appropriate to seek their views on the final specific proposals, particularly if route 2 is included as this appears to offer assisted dying options particularly or exclusively to them”.

To this end, plans have already been made to undertake additional targeted consultation with disabled Islanders during the lodging period for the Report and Proposition. These consultation sessions will focus on ‘Route 2’ – unbearable suffering as a proposed eligibility criteria. Feeback from these sessions will be lodged as an addendum to the Report and Proposition by the Council of Ministers two weeks before the scheduled date for debate.  ​