Review of Assisted Dying (S.R.3/2024): Response of the Minister for Health and Social Services

Findings

Comments

1

There  are  three  Success  Criteria' within the Action Plan accompanying the  Palliative  and  End  of  Life  Care Strategy for Adults in Jersey, marked as Current / Ongoing' and three marked as Not Started'.

Correct.

Work has now started on two of the three actions which  were  previously  reported  as  having  not started. This information will be set out in an updated strategy action plan to be published by end July 2024, once it has been considered and approved  by the  End-of-Life Strategy  working group.

2

The  evidence  provided  about  the quality  and  the  availability  of  the palliative and end of life care provision in Jersey, through long-term objectives and  underpinning  metrics  within  the Palliative and End of Life Care Strategy for Adults in Jersey, is key to providing States  Members  with  necessary assurances  prior  to  making  their decision  to  support  future  assisted dying legislation.

Correct.

3

The  inclusion  of  a  12-month  life expectancy  for  Islanders  with neurodegenerative  conditions  under Route 1: Terminal illness:

 Is  a  development beyond the original, in-principle, decision taken by the States Assembly in November  2021  to  permit assisted dying.

Correct.

Findings

Comments

Reflects  the  particular quality of life challenges  faced  by  people  with neurodegenerative conditions.

4

It is unclear whether the concerns raised by the Ethical Review, particularly in relation  to  Route  2:  Unbearable suffering,  have  been  considered  in detail  prior  to  lodging  the  final proposals  for  debate  by  the  States Assembly.

On 25th April 2023, the Council of Ministers (COM)  agreed  to  hold  a  series  of  Ministerial workshops to:

• consider  updates  to  assisted  dying proposals in response to the consultation feedback,

• confirm the content of draft proposals to be put forward for ethical review.

At those workshops, attending Ministers, having considered the consultation feedback:

• confirmed a number of amendments to assisted dying proposals (for example, the decision that the register of assisted dying professionals  should  be  a  private,  as opposed to a public register; the inclusion of  the  12-month  life  expectancy  for people  with  neurodegenerative  disease. Many of these changes are described in

P18/2024, Appendix 1)

• determined that both Route 1 and Route 2 should be retained as both Routes formed part of the P95/2021 in principle decision. Prior  to  making  that determination  the Ministers had considered the feedback on Route 2, and the associated divergence of views.

COM ratified this decision at its meeting on 11 July 2023 and determined that the proposals to be examined by the Ethical Review should include both Route 1 and Route 2.

The  Ethical  Review  report  was  subsequently published  on  7  November  2023.  The  Route  2 concerns raised by the Ethical Review authors were  subsequently  considered  by  Ministers. (Note:  The  Ethical  Review  Panel  directly provided  briefing  meetings  for  the  Council  of Ministers; Scrutiny; States Members).

Further  to  those  briefings,  and  having  further considered the findings of the Ethical Review in discussion with Officers, the previous Ministers for Health and Social Services, Justice and Home Affairs, and the Environment determined that:

• Route 2 should be retained in the proposals presented to the Assembly (ie. should form part of P18/2024) on the basis that Route 2 was a central feature of the Citizen's Jury

Findings

Comments

and  the  Assembly's  P95/2021  decision making

 Officers  should  undertake  additional engagement work with people disabilities / long-term conditions on assisted dying post publication of the P18/2024 proposals. (The feedback from this engagement is set out in an addendum to P18/2024)

Note:  The  previous  Chief  Minister  determined that that previous Ministers for Health and Social Services,  Justice  and  Home  Affairs,  and  the Environment  should  form  an  Assisted  Dying Ministerial Group and, on behalf of COM, finalise any outstanding matters.

Post the change of Government, I determined that I  would  uphold  the  decisions  of  the  previous Ministers,  including  retaining  Route  2  in  the P18/2024  proposals,  which  were  subsequently approved for lodging by COM on 5 March 2024.

5

Details  about  the  level  of  concern amongst  respondents  about  the inclusion  of  Route  2:  Unbearable suffering, as a percentage breakdown of the 1,300 respondents to the Phase 2 Consultation  Feedback  Report,  were not provided.

6

On  the  advice  of  the  Children's Commissioner,  children  were  not consulted on the final proposals due to the distressing nature of assisted dying, however,  the  provision  of  assisted dying for Islanders with mental illness and those under the age of 18 may be subject to future consideration.

P18/2024 does not suggest that future assisted dying provision may be made for children and / or Islanders  with  mental  illness.  It  accepted, however, that any future Assembly may choose to amended the eligibility criteria, whether or not to include children and / or people with a mental illness.

As per P18/2024 page 173:

"The Phase 2 consultation proposed that the law should provide a broad Regulation-making power allowing the Assembly to amend the eligibility criteria  in  the  event  the  Assembly  deems  it appropriate to do so in future. Some respondents expressed  concern  over  the  potential  for  a

Findings

Comments

slippery slope' of expanding eligibility criteria, particularly with regard to potential expansion to allow assisted dying for those aged under 18

7

Any  future  proposed  changes  to  the assisted  dying  eligibility  criteria  will first  require  approval  by  the  States Assembly.

Correct

8

The European Convention on Human Rights, which extends to Jersey and is incorporated into domestic Law by the Human Rights (Jersey) Law 2000, does not provide a person with the right to die.

Correct

9

The final proposals for assisted dying do not specify the training requirements in  relation  to  the  identification  and prevention of coercion.

10

The requirements of members of the assisted  dying  tribunals  will  be determined by The Tribunal Service.

Correct

11

The  presumption  of  decision-making capacity within the final proposals is in line  with  the  general  law  governing capacity, however, it is unclear whether the  removal  of  the  presumption  of decision-making  capacity  was considered as part of the development of the final proposals, as recommended by the Ethical Review.

The  matters  raised  by  the  Ethical  Review, including  the  removal  of  the  presumption  of capacity,  were  considered  by  Ministers.  This included:

• the  Ethical  Review  Panel  directly provided  briefing  meetings  for  the Council of Ministers (COM); Scrutiny; States Members, and;

• detailed  consideration  by  the  Assisted Dying Ministerial Group (which included the  previous  Ministers  for  Health  and Social  Services,  Justice  and  Home Affairs, and Environment).

Findings

Comments

On  24  October  2023,  the  Assisted  Dying Ministerial  Group  attended  the  COM  pre- publication briefing on the findings of the Ethical Review by the authors. In response to that briefing and a further meeting with officers on 26 October 2023,  the  Ministers  instructed  officers  to  give further examination to the matters related to the potential removal of the presumption of decision- making capacity. In response to this instruction Officers sought further advice from

the Law Officers Department (LoD) and from the Government  of  Jersey  professional  leads  on capacity and self-determination (there had been previous  discussions  with  LoD  and  the professionals  leads  as  part  of  the  process  of developing the initial proposals).

On the back of the additional advice received, Officers  proposed  that  the  presumption  of capacity  should  be  retained  as  it  was  already established as important principle in Jersey law, and  other  jurisdictions  that  set  out  a  specific capacity test for an assisted dying decision in law, had also retained a presumption of capacity.

The  previous  Minister  for  Health  and  Social Services, having considered that additional advice received,  subsequently  advised in  the  Assisted Dying  Ministerial  Group  that  it  should  be retained.

12

Assisted  dying  capacity  training  will focus on how professionals undertake capacity  assessments  and  make determinations that relate to the specific capacity test for assisted dying.

Correct.

13

The capacity test for assisted dying will be more extensive than that required under  the  Capacity  and  Self Determination  (Jersey)  Law  2016, however, it is unclear what the specific capacity test for assisted dying will be and what the additional requirements will be.

P18/2024 proposes that law will set out a specific assisted dying capacity test and, as per paragraph 289, it is proposed a person will have decision- making capacity in relation to assisted dying if they have the capacity to:

1. "understand  any  information  or advice  about  an  assisted  dying decision that is required under the law to be provided to them

2. understand the matters involved in an assisted dying decision

Findings

Comments

c.  understand the effect of an assisted dying decision

4. weigh up the factors referred to above for  the  purposes  of  making  an assisted dying decision

5. communicate  an  assisted  dying decision  in  some  way  (including verbally, using gestures or by other means)."

The  exact  test  and  any  associated  additional requirements  will  be  clarified  during  the  law drafting phase.

14

The Administering Practitioner will be trained  to  recognise  verbal  and  non- verbal cues associated with refusal or resistance to an assisted death.

Correct.

15

Some  respondents  with  a  healthcare background that responded to the Phase 2  Consultation  on  Assisted  Dying believed at least five years' or 10 years' experience is required for doctors and registered  nurses  assigned  to  the Administering Practitioner role.

Correct.

P18/2024 currently provides that, to be an assisted dying practitioner, professionals need to be 12 months post professional registration. 12 months accords with advice from the GMC.

I am, however, aware that some on-island health and  care  practitioners  have  expressed  ongoing concern about this time period (contrary to the position of their professional registration bodies who  have  not  raised  any  concerns)  and  will undertake  further  consultation  on  this  matter during the law drafting phase.

16

Further  work  to  clarify  the  types  of premises  where  a  right  to  refuse  to participate  could  apply  will  be undertaken as part of the development of  assisted  dying  legislative  drafting instructions.

Correct.

17

Discussions  are  underway  about appropriate  places  within  the  Jersey General Hospital for assisted dying.

Correct. It has been discussed and agreed that assisted  deaths  should  not  be  permitted  on  a general ward and that, post Assembly decision making on 21 May 2024, further consideration should be given to an appropriate place.

18

The final proposals for assisted dying require appropriate planning for other patients and residents in Government of

Correct.

Findings

Comments

Jersey owned and / or managed care facilities.

19

The  assisted  dying  legislation  will remain  silent  regarding  discussions about  assisted  dying  between healthcare  professionals  and  patients, however, the Minister for Health and Social  Services  will  bring  forward Appropriate Conversations Guidance' to  clarify  the  circumstances  where raising the issue of assisted dying may be appropriate.

Correct. This position is supported by the General Medical  Council  (GMC)  and  Nursing  and Midwifery Council (NMC).

20

The Panel's  Amendment to the  final proposals  is  intended  to  give  more clarity and flexibility when interpreting the  word  "participation"  in  assisted dying.

Noted.

21

The publication of an Assisted Dying Annual Report is intended to balance the  need  for  transparency  and destigmatisation  of  assisted  dying against respect for patient privacy.

Correct.

22

The work to develop the assisted dying training programme and guidance will commence  following  the  States Assembly debate on the final proposals on 21st May 2024.

Correct.

23

It is unclear what items of guidance will be  developed  and  prioritised  for consideration  prior  to  the  States Assembly  debate  on  assisted  dying legislation.

As  the  Assembly  has  not  yet  determined  key elements of the proposed law, officers are unable to provide a full list of items of guidance to be developed.

24

The details about all of the guidance to be  produced  will  be  finalised  during Quarter 1 and Quarter 2 of 2026, after the  States  Assembly  has  made  a decision  on  the  draft  assisted  dying legislation.

Correct. The guidance flows from the law, so it cannot  be  finalised  until  any  law  has  been adopted.

25

The draft assisted  dying law will be published  with  an  accompanying detailed summary of the assisted dying training programme.

Correct.

Findings

Comments

26

The  Minister  for  Health  and  Social Services would be required to suspend the  provision  of  assisted  dying  in Jersey,  in  the  event  that  adequate funding was not available or adequate staffing  was  not  available  for  the service to be delivered safely and in accordance with law.

Correct.

27

The Panel is unclear about how broader staffing and recruitment challenges will be  addressed  in  relation  to  the additional  resource  implications associated with the provision of assisted dying in Jersey.

This matter cannot be more adequately addressed until the Assembly has determined the scope of any  draft  law,  and  further  survey  work  is undertaken amongst health and care professionals about their willingness to participate in an assisted dying service. See P18/2024: Note to Staffing, between paragraphs 136 and 137.

28

The  potential  risks  associated  with suspension of assisted dying in Jersey will  be  described  in  a  full  risk assessment  of  the  assisted  dying provisions and presented to the States Assembly alongside the draft assisted dying law.

Correct.

Recommendations

To

Accept/ Reject

Comments

Target date of action/ completion

1

Key Recommendation 1: The

MHSS

Accept

Evidence related to the quality and availability of palliative and end of life care in Jersey will made available.

Two months before scheduled debate on draft law.

Minister for Health and Social Services should publish a plan to  evidence  the  quality  and availability  of  palliative  and end of life care in Jersey, by no later than  two months  before the assisted dying legislation is scheduled  for  debate  by  the States Assembly.

2

Key Recommendation 2: The

MHSS

Accept

It is envisaged that there will be an extended lodging period for the draft assisted dying law (in the event that the Assembly agree to proceeding to

Two months before scheduled debate on draft law.

Minister for Health and Social Services should publish an appendix to the final proposals for assisted dying, setting out the training requirements, that comprehensively cover the identification of and

prevention of coercion by no later than two months before the assisted dying legislation is scheduled for debate by the States Assembly.

law drafting). The draft law would be accompanied by supporting information that will include detail of the training and guidance requirements, which would include matters related to identification and prevention of coercion.

3

Key Recommendation 3: The

MHSS

Accept

-

To be undertaken during implementatio n phase (2026 to early 2027)

Minister for Health and Social Services must ensure sufficient planning is in place to prioritise patient  wishes  about  possible locations  for  assisted  dying, including within the home, and that the Jersey General Hospital is only used for assisted dying as a last resort.

4

Key Recommendation 4: The

MHSS

Accept

COM comment accepting amendment was lodged on 14 May.

Complete

Minister for Health and Social Services  should  support  the Panel's Amendment to the final proposals for assisted dying.

Recommendations

To

Accept/ Reject

Comments

Target date of action/ completi

on

1

The Minister for Health and Social Services should publish information about the

MH SS

Accept in part

An action plan will be published by end July 2024. It cannot be published by 21 May as it needs to be considered and

By end July 2024

Recommendations

To

Accept/ Reject

Comments

Target date of action/ completi

on

progress of the actions marked as Current / Ongoing' and Not Started' within the Action Plan accompanying the Palliative and End of Life Care Strategy for Adults in Jersey, by no later than Tuesday 21st May 2024.

approved by the End of Life Strategy working group.

2

The Minister for Health and Social Services should confirm the timeline for the development of a Palliative and End of Life Care Strategy beyond 2026, by no later than two months before the assisted dying legislation is scheduled for debate by the States Assembly.

MH SS

Accept

-

Two months before schedule d debate on draft law.

3

The Minister for Health and Social Services should publish details about how the concerns raised by the Ethical Review in relation to Route 2: Unbearable suffering, were considered as part of the development of the final proposals for assisted dying, by no later than Tuesday 21st May 2024.

MH SS

Accept

Completed.

See response to Finding 4 above which contains  the  information  requested  in this recommendation.

4

The Minister for Health and Social Services should not undertake any consultation with children on assisted dying without engaging first with the Children's Commissioner.

MH SS

Accept

To  date,  there  has  been  no  direct consultation  with  children  because  it would have been contrary to advice from the Children's Commissioner. If I were to be considering any future consultation with children, I would first seek advice and  input  from  the  Children's Commissioner.

As and when required

Recommendations

To

Accept/ Reject

Comments

Target date of action/ completi

on

5

The Minister for Health and Social Services should publish details of any previous or ongoing consultation with the Tribunal Service about the required skillset of Assisted Dying Tribunal Members, by no later than Tuesday 21st May 2024.

MH SS

Accept

P18/2024 proposes that the Tribunal will consist of one legal member, one medical member and one lay member. The Judicial Greffier was sighted on that proposal ahead of publication.

The Panel were informed, at the Assisted Dying Review Panel meeting on 3 April that:

• there had been active and live discussions about the skillset required by Tribunal members (ie. discussions amongst officers researching comparable skills requirements in order to frame the P18/2024 proposals for discussion with the Judicial Greffier prior to publication of the proposals)

• the determination of the skills set / level of experience required would be a matter for the tribunal service, and that it was anticipated that tribunal service will develop the requirements the point at which the Tribunal Service is looking to stand up a tribunal.

Further  to  the  publication  of  the proposals  there  has  been  no  ongoing consultation with the Tribunal Service, as there is not information to provide.

Complete d.

See informati

on set out in the

Commen

ts column which provides the

informati

on requested

.

6

The Minister for Health and Social Services should publish the full details and processes for establishing refusal or resistance to an assisted death for a person who

MH SS

Accept

-

Two months before schedule d debate on draft law.

Recommendations

To

Accept/ Reject

Comments

Target date of action/ completi

on

has lost decision-making capacity, by no later than two months before the assisted dying legislation is scheduled for debate by the States Assembly.

7

The Minister for Health and Social Services must provide details about the timeline and stakeholders involved in discussions regarding appropriate places within the Jersey General Hospital for assisted dying, by no later than two months before the assisted dying legislation is scheduled for debate by the States Assembly.

MH SS

Accept

-

Two months before schedule d debate on draft law.

8

The Panel is keen to ensure that assisted dying is only carried out within the Jersey General Hospital as a last resort, and the Minister for Health and Social Services must ensure that the Jersey Assisted Dying Service is not headquartered within the Jersey General Hospital.

MH SS

Accept in part

I agree that an assisted death should only be carried in the Jersey General Hospital as a last resort, taking into consideration the wishes of the patient.

At  this  point  in  time,  no  detailed consideration  has  been  given  to  the location of the headquarters of the Jersey Assisted  Dying  Service  (which  is delivering  administrative  tasks  / coordinating  assessment  processes), hence  I  believe  it  is  pre-emptive  to commit  not  to  headquarter  in  the Hospital. In making this decision I will, in  consultation  with  key  stakeholders, need to weigh up the impact on people who want to access the Assisted Dying Service and the impact on other users of hospital services.

N/A

9

The Minister for Health and Social Services must ensure robust planning is in place to mitigate the potential impact of

MH SS

Accept

-

Two months before schedule d debate

Recommendations

To

Accept/ Reject

Comments

Target date of action/ completi

on

assisted dying on any other residents or patients of Government of Jersey owned and / or managed care and nursing facilities, by no later than two months before the assisted dying legislation is scheduled for debate by the States Assembly.

on draft law.

10

The Minister for Health and  Social  Services should publish details and plans  about  assisted dying  training  and guidance that include:

• A  detailed summary outlining  all items of assisted dying  guidance to  be  developed and produced.

• The  items  of guidance  to  be prioritised, shared  and presented  to States Members.

• Details and plans about  the development  of the  assisted dying  training programme.

This information should be provided no later than two months before the assisted dying legislation

MH SS

Accept

See response to Key Recommendation 2 above.

Two months before schedule d debate on draft law.

Recommendations

To

Accept/ Reject

Comments

Target date of action/ completi

on

is scheduled for debate by the States Assembly.

11

The Minister for Health and  Social  Services should  provide  details about  how  general recruitment  and  staffing challenges  across  the Health  and  Community Services Department will be  addressed  in relation to the additional resource implications  associated with the Jersey Assisted Dying  Service,  by  no later  than  two  months before the assisted dying legislation  is  scheduled for debate by the States Assembly.

MH SS

Accept

-

Two months before schedule d debate on draft law.

12

The Minister for Health and  Social  Services should  provide  details and plans to mitigate and respond  to  the  risk  of Health  and  Community Services not being able to recruit sufficient staff to the Jersey Assisted Dying Service, by no later than two  months  before  the assisted dying legislation is scheduled for debate by the States Assembly.

MH SS

Accept

-

Two months before schedule d debate on draft law.