Assisted Dying

STATES OF JERSEY

ASSISTED DYING

Lodged au Greffe on 13th October 2021 by the Council of Ministers

Earliest date for debate: 14th December 2021

STATES GREFFE

2021  P.95

PROPOSITION

THE STATES are asked to decide whether they are of opinion

having regard to the key recommendation of the Citizen's Jury on Assisted Dying:

1. to agree, in principle, with the Jury that assisted dying should be permitted in Jersey; and that

1. the Government of Jersey should make arrangements for the provision of an assisted dying service that is available to a person aged 18 or over who:
   1. has a voluntary, clear, settled and informed wish to end their own life; and
   2. has capacity to make the decision to end their own life; and
   3. has been diagnosed with a terminal illness, which is expected to result  in  unbearable  suffering  that  cannot  be  alleviated  and  is reasonably expected to die within six months; or, has an incurable physical condition, resulting in unbearable suffering that cannot be alleviated;
2. an assisted dying service in Jersey may provide assistance in dying in one of the following two ways:
   1. either by physician assisted suicide – whereby a registered medical professional may prescribe lethal drugs at the request of a person, who meets defined eligibility criteria, to enable that person to self- administer the drugs to end their own life; or by
   2. voluntary euthanasia - where a person who meets the defined eligibility criteria has their life ended, at their voluntary request, by a registered medical practitioner; and
3. an assisted dying service in Jersey should be subject to the following safeguards:

1. assisted dying should be permitted with the direct assistance of registered medical practitioners and registered nurses only;
2. the law should provide for a conscientious objection clause so that any nurse, medical practitioner or other professional is not under a legal duty to participate in assisted dying;
3. assisted dying should be subject to a mandatory period of reflection;
4. a withdrawal of request should be permitted at any time; and
5. assisted dying should only be permitted at pre-approved locations.

2. to agree, in the event that paragraph (a) is adopted, that assisted dying should be available to Jersey residents only;

3. to agree in the event that paragraph (a) is adopted, that assisted dying should be subject to a pre-approval process which, subject to further consultation, may involve a decision made by a court or specialist tribunal; and
4. to request the Council of Ministers to prepare and issue law drafting instructions before the 2022 election, with a view to draft legislation being available for debate by the States by the end of 2022.

COUNCIL OF MINISTERS

REPORT

Contents

SECTION A: BACKGROUND .................................................................................5 What is assisted dying? ..........................................................................................5 Assisted dying in Jersey .........................................................................................5 Palliative care in Jersey ..........................................................................................5 Assisted dying in other jurisdictions ......................................................................6 Withdrawals of request .........................................................................................24 SECTION B: ELIGIBILITY CRITERIA................................................................. 13 Introduction .......................................................................................................... 13 Age ....................................................................................................................... 13 Voluntary request ................................................................................................. 14 Capacity of the individual .................................................................................... 15 Health-related eligibility criteria .......................................................................... 16 Residency status ................................................................................................... 19 SECTION C: MODES OF ASSISTED DYING ...................................................... 20 SECTION D: SAFEGUARDS AND PROCESSES ................................................ 21 Introduction .......................................................................................................... 21 Pre-approval process ............................................................................................ 22 Assistance from doctors and nurses ..................................................................... 23 Conscientious objection clause............................................................................. 23 Period of reflection ............................................................................................... 24 Withdrawals of request ......................................................................................... 24 Pre-approved locations ......................................................................................... 25 Other safeguarding considerations ....................................................................... 25 SECTION E: TIMEFRAME .................................................................................... 26

APPENDIX 1: FINAL REPORT FROM JERSEY ASSISTED DYING CITIZENS' JURY28

SECTION A: BACKGROUND What is assisted dying?

1. Assisted dying is where a person suffering from a terminal illness or a condition that causes unbearable suffering, is helped to die. They are usually assisted by a healthcare professional who either provides, or administers, lethal drugs.
2. Agreement on the definition of assisted dying varies between people and jurisdictions. The term assisted dying is most usually used as an umbrella term encompassing both assisted suicide (providing someone the means to end their own life) and voluntary euthanasia (where one person causes another person's death with their consent).
3. Withdrawal of treatment is not considered to be assisted dying. It is sometimes referred to as passive euthanasia', but others disagree with this terminology. Withdrawal of treatment is a decision usually taken by a doctor in consultation with family members to withdraw life-sustaining medical treatment - such as a ventilator or nutritional support through a feeding tube - to allow a natural death to occur, if it is considered that continuing treatment is not in the best interests of the patient.

Assisted dying in Jersey

4. In Jersey, unlike the UK, there is no legislation that governs ending your own life or which prohibits encouraging or assisting the suicide, or attempted suicide, of another.
5. There is evidence that, whilst suicide was previously a crime under customary law, the law has evolved and the courts have ceased to treat suicide as a criminal offence. If suicide is not an offence, it would follow that there is no offence of aiding, abetting, counselling or procuring suicide.
6. However, attempted murder and aiding, abetting, counselling and procuring murder are offences under Jersey law, and it is conceivable, depending on the particular facts, that assisting another person to take their own life could be charged under one of those offences.
7. This current position results in some uncertainty as to whether assisting a person to die in Jersey is, or is not, lawful. Jersey law does not prevent a resident travelling to Switzerland to access assisted dying; Switzerland being the only jurisdiction that permits assisted dying for non-residents. Where Jersey residents wish to do so they must pay the associated costs (estimated at up to £25,000 including travel) and must be well enough to travel. Therefore, whilst it is theoretically possible for a Jersey resident to lawfully access assisted dying in another jurisdiction there are considerable associated inequities.
8. Withdrawal of treatment is not a criminal offence in Jersey or the UK.

Palliative care in Jersey

9. Palliative care is defined by the World Health Organisation as a holistic approach that improves  the  quality  of  life  for  patients  with  a  life–threatening  illness  (and,  by

extension, their families) through the prevention and relief of suffering by means of early identification and treatment of pain whether that be physical, psychosocial, or spiritual.1

10. Palliative care can be provided at any time after diagnosis not just in the last months or days of life and also extends to supporting the bereaved family after death.
11. Palliative care in Jersey is provided where that person requires it, whether that be at Jersey Hospice Care, the Hospital, in Care Homes, through Family Nursing and Home Care  or  in  their  own  homes  supported  by  trained  staff.  Providers  work  towards providing a standard of care that accords with the National Gold Standards Framework Centre in End-of-Life Care 2, which is considered a best practice model in end-of-life care.
12. An island-wide cross sector partnership has been established to develop a palliative and end of life care strategy which will include an integrated care pathway. It is envisaged that this strategy will be published by spring 2022. The aim is for high-quality palliative care to be accessible to all and that care be co-ordinated and delivered by the right person, at the right time in, the right place.

Assisted dying in other jurisdictions

13. Assisted dying is lawful in a number of jurisdictions, although the associated legislation varies considerably between those jurisdictions.  
14. Table  1  summarises  the  key  criteria  in  six  such  jurisdictions  that  are  broadly representative of the breadth of legislation and assisted dying provision globally. In simple terms, restrictions on who is eligible for assisted dying are viewed as most permissive in the Netherlands and Belgium, and least permissive in Oregon and other US states, where the eligibility criteria is significantly more stringent.
15. Switzerland has not passed legislation to legalise assisted dying, rather it is permissible by dint of the Swiss Criminal Code 1942 permitting individuals to assist in another's suicide as long as the motive for doing so is not selfish'.
16. Other jurisdictions where assisted dying is currently permitted, that are not set out in Table 1 include other US states (California, Colorado, New Mexico, Hawaii, New Jersey,  Washington  state,  Washington  DC,  Vermont  and  Maine),  Colombia, Luxembourg and the Australian states of Western Australia, Victoria and Tasmania. Furthermore:

• assisted dying legislation will come into effect in New Zealand on 7 November 2021

• a number of countries are working towards the introduction of assisted dying legislation following court rulings to create a defence for doctors, including Germany, Italy and Austria

• in Portugal, the Parliament voted to legalise euthanasia in January, however, the Constitutional Court effectively overturned this decision and rejected the bill as unconstitutional in March 2021.

1 https://www.who.int/news-room/fact-sheets/detail/palliative-care 2 Welcome to Gold Standards Framework

17. There  are  also  assisted  dying  Private  Members'  bills  –  the  Assisted  Dying  for Terminally Ill Adults (Scotland) Bill ("the proposed Scott ish Bill")[3] and the Assisted Dying Bill ("UK Bill") in the early stages of passing through the Scott ish and UK parliamentary processes and the Oireachtas (the legislature in Ireland).

 Table 1: Summary of assisted dying legislation in other jurisdictions

Background to report and proposition

18. In recent years, deliberations on assisted dying have taken place in many jurisdictions in Europe and beyond. A number of parliaments have debated the issue; some close to home including Guernsey and the Isle of Man; others further away, such as New Zealand and Canada. Some of these debates have resulted in legislation change as set out in Table 1, others have not.

19. Private members bills in both the Scott ish and UK Parliaments will be discussed in the coming months, and it has been recommended that an Oireachtas Special Committee be established to further examine the topic in Ireland.

20. Community interest in assisted dying is visible in Jersey. A 2018 e-petition calling for the States Assembly to amend Jersey law was signed by 1,861 people, plus public meetings and online surveys in 2019 all indicate that there is some degree of support for assisted dying in our community.

21. In February 2020, the Minister for Health and Social Services committed to establishing a Citizens' Jury ("the Jury") to consider whether assisted dying should be permitted in Jersey. Recognising the legitimate calls for the Assembly to consider the issue, the Minister  wanted  to  ensure  that  any  future  debate  was  informed  by  in-depth understanding of the community's response to the medical, ethical, legal and regulatory issues associated with assisted dying.

22. That Jury, having initially been delayed due to Covid, took place between March and May 2021, with the final Jury report being published on 16 September 2021.

23. 78% of Jury members agreed that assisted dying should be permitted in Jersey:

• where  a  Jersey  resident,  aged  18  or  over,  has  a  terminal  illness  or  is experiencing unbearable suffering and wishes to end their life, and

• subject to stringent safeguards including a pre-approval process; a mandatory period of reflection and consideration; with the direct assistance from doctors or nurses only.

24. The Jury also noted, but did not vote on, safeguards that it was assumed would apply if assisted dying were permitted in Jersey. These assumed safeguards are consistent features of assisted dying legislation in other jurisdictions. They include:

• conscientious objection clause for medical professionals

• certain approved locations: e.g. at home, hospital, specialist facility/ pre- approved location

• format of request: usually a written, witnessed request

• withdrawal of request: permitted at any time

The Citizens' Jury process

25. The Jury of 23 people took place between March and May 2021.
26. 4,600 invitations were sent to a random sample of Jersey addresses in January 2021. People were invited to register their interest in sitting on the Jury. 477 people responded. An external organisation (Sortition Foundation) conducted a civic lottery technique to randomly select which of the 477 people would participate in the Jury, whilst ensuring those selected would broadly represent the Island's population in terms of age; gender; location; socio economic status; place of birth and attitude towards assisted dying.
27. The Jury met over 10 online sessions. Each session lasting 2 to 2.5 hours and was hosted by Involve, an independent participation charity. The Jury considered the central question: "Should assisted dying be permitted in Jersey and if so, under what circumstances?"
28. Across the 10 sessions, Jury members considered all aspects of assisted dying, including the experience in jurisdictions where assisted dying is already permitted. They heard from over 30 expert witnesses, including people with lived experience, health care professionals, academic and legal professionals, campaign groups and faith groups. Speakers included both local and international voices, plus people in favour of, and people opposed to, assisted dying.
29. Jury members, having deliberated the central question throughout the 10 sessions, then undertook a series of votes to determine their recommendations as detailed in the Jury's final report (see Appendix 1).
30. The Jury process was supported by:

• an independent advisory panel, who oversaw the whole process to ensure its integrity

• content oversight advisers, who oversaw the design of the Jury sessions in terms of overall content, selection of speakers and evidence

• expert advisers, who supported the content oversight advisors and attended all Jury sessions

• Involve who planned and facilitated the sessions and supported participants

• Government of Jersey ("GoJ") policy officers, who coordinated and supported the delivery of the overall project

Public opinion beyond Jersey's Citizens' Jury

31. Research undertaken in Jersey and the UK indicates a substantial, and enduring, degree of public support for a change in the law on assisted dying. There is, overall, relatively little variation in this support across demographic subgroups of the population, including by age and religious affiliation.

Age

32. The British Social Attitudes Survey 34 (2017) notes that those in the oldest age groups (75+) tend to be less supportive of voluntary euthanasia than younger age groups. For example, 77% of the youngest age group say euthanasia by a doctor should be permitted where someone who will die from a painful disease, compared with 69% of the oldest age group. However, it is the middle age groups who are most likely to approve of

voluntary euthanasia, with 85% of 45–54-year-olds and 84% of 55–64-year-olds indicating their support.

Religion

33. Those with no religion are most likely to support euthanasia, although the difference is not as significant as some may expect. 89% of people without religion say euthanasia by a doctor for someone with a terminal disease should be allowed, compared with 67% of people with a religion.[7]

Recent studies

34. Other recent UK research studies on attitudes towards assisted dying include Ipsos MORI and the Economist (2015)[8] and NatCen, commissioned by My Death, My Decision (2019)[9] and a Populus poll, commissioned by Dignity in Dying (2019)[10]. These studies also point toward strong public support for assisted dying.

35. Research undertaken locally includes:

• 4insight, commissioned by End-of-Life Choices Jersey - a local pro-assisted dying campaign group - (2019)[11] which indicated that across 4 given scenarios, between 86.5% and 92% of respondents believed that assisted dying would be acceptable to some extent, even if just rarely and;

• Island Global Research, on behalf of Dignity in Dying (2021)[12], which recorded that 73% of Jersey-based respondents strongly support assisted dying for terminally ill adult residents and 57% of respondents believe it is of high importance that a law change is debated this political term.

36. Both local research studies used online surveys. The research was conducted by independent research organisations on behalf of assisted dying campaign groups. In both instances, a self-selecting sample responded to the survey. Islanders were invited to participate through invitations sent out to a research panel database, this was boosted by social media promotion encouraging people to complete the surveys.

37. A Norwegian study has noted that framing effects i.e. question wording and ordering on attitudes towards assisted dying, can influence survey results. Though this study did still show a majority support for assisted dying for terminal and chronic disease.[13]

Medical associations and local practitioner views

38. A 2019 survey of Jersey doctors commissioned by End-of-Life Choices Jersey (separate to the general public survey referenced in paragraph 35) - suggested support for assisted dying in certain circumstances. 62% of doctors responding to the survey noted that they would always', sometimes' or occasionally' be willing to participate in assisted dying across a range of scenarios.[14]

39. This level of support is broadly similar to GPs in the UK, with 61% of surveyed British Medical Association (BMA) members voting in favour of the BMA taking a supportive or neutral position' on assisted dying.16 The overall level of support suggests that local practitioners may be willing to participate in assisted dying, should it be permitted in law and if it accords with the standards set by their professional registration body.

40. Whilst UK professional registration bodies do not hold a public position on assisted dying  (see  below)  some  other  professional  bodies  representing  health  and  care practitioners do hold publicly stated positions:

• BMA – adopted a position of neutrality in September 202117

• Royal College of Physicians (RCP) - adopted a position of neutrality in March 201918

• Royal College of Nursing (RCN) – adopted a position of neutrality in 201419

• Royal College of General Practitioners (RCGP) - oppose a change in the law on assisted dying20

• Association for Palliative Medicine of Great Britain and Ireland (APM) – oppose a change in the law on assisted dying21

41. A neutral position indicates an organisation will neither support nor oppose attempts to change the law on assisted dying but will continue to represent members' interests in any legislative proposals.

Note: Professional registration bodies

There is a requirement for health and care professionals in Jersey to be registered with the Jersey Care Commission and the relevant UK professional registration body, these being:

• General Medical Council (GMC) for doctors

• Nursing and Midwifery Council (NMC) for nurses

• General Pharmaceutical Council (GPhC) for pharmacists and pharmacy technicians

• Health and Care Professions Council (HCPC) for physiotherapists and occupational

therapists

The UK professional registration bodies require registered practitioners in Jersey to follow that body's regulations and standards which are based on UK legislation.

If the States Assembly decide to permit assisted dying in Jersey – ahead of any decision being taken in the UK - there may be discrepancies between the professional registration bodies' standards  and  what  is  permitted  under  Jersey  law.  There  are  concerns  that  this  could potentially give rise to professionals being considered unfit to practice' by their registration body thereby rendering them unable or restricted in their ability to practice in Jersey. Some of these bodies have, however, indicated that in general terms, if a professional acts within the legislation of the jurisdiction they practice in and there were no other concerns about their conduct or performance, they are unlikely to be considered unfit to practice, this would be considered on a case-by-case basis.

16 Physician-assisted dying survey (bma.org.uk)

17 Physician assisted dying (bma.org.uk)

18 https://www.rcplondon.ac.uk/news/rcp-clarifies-its-position-assisted-dying 19 2314.pdf (gov.soj)

20 https://www.rcgp.org.uk/policy/rcgp-policy-areas/assisted-dying.aspx

21 The Association for Palliative Medicine (apmonline.org)

GoJ policy officers are having ongoing dialogue with the GMC, NMC, GPhC and the HCPC with a view to ensuring that, should the Assembly vote to permit assisted dying, this would not have a negative bearing on professionals registered in Jersey. Those bodies cannot, however, provide a firm position until the point at which they are able to review any proposed legislation, which would likely be available for review before the end of 2022.

Whilst this is an area of potential risk, it should be noted that concerns about professional registration are not hindering progression of the Bills being brought forward for debate in Scotland and the House of Lords.

SECTION B: ELIGIBILITY CRITERIA

Introduction

42. The Jury recommended that assisted dying should be permitted in Jersey for those aged 18 or over, who have a terminal illness or unbearable suffering and wish to end their life.
43. The  proposed  eligibility  criteria  detailed  in  this  section  are  based  on  the recommendations of the Jury, the exception being that it is not proposed, at this stage, that advanced decision-making is permitted (see paragraphs 61 - 64).

Age

44. It is proposed that assisted dying is permitted for people aged 18 or over.
45. The Jury did not provide a clear majority recommendation relating to age (see box below). Given this, the Assembly are asked whether they agree, in principle, that assisted dying is available to those aged 18 or over. Further consultation and research on under 18s will be undertaken prior to lodging of any associated legislation. This will include detailed consultation with the Children's Commissioner.
46. Assisted dying is available to those aged 18 and over in Switzerland, Canada, Spain and Oregon (plus New Zealand when their legislation comes into effect) and to both under and over 18s in the Netherlands and Belgium.
47. The UK Bill proposes making assisted dying available to adults aged over 18. The proposed Scott ish Bill proposes making assisted dying available to those aged 16 or over. [15]
48. A key argument for the inclusion of under 18s centres on the perceived inequality and lack of children's rights by not allowing children who endure unbearable suffering to end their life in a jurisdiction where adults are permitted to do so.
49. Arguments against the inclusion of children rest on the notion that a child is not capable of giving informed consent. Therefore assisted dying involving a child may potentially be viewed as involuntary euthanasia. There is complex interplay between the role of parents as legal representatives, a child's decision-making capacity, the child's wishes and what is considered in the best interest of the child by the medical practitioner.

Jury recommendation:

Jury members were asked: "Who should be eligible for assisted dying relating to age criteria?" (Jury members were asked to state their first and second preferences from "Over 18s only"; "Under 18s in limited circumstances" and "Anybody of any age").

If Jury members' first preferences alone are taken into account, the Jury voted for "Over 18s only" (42.9%) but this option does not achieve an overall majority. If Jury members' second preferences are also considered, the vote results in a near tie between "Over 18s only" and "Anybody of any age" (both 28.6%). The Jury report recommends that the GoJ will, therefore, need to give this matter further consideration.

Proposition ref: a(i)

Voluntary request

50. It is proposed that assisted dying is only permitted where a person has a voluntary, clear, settled and informed wish to end his or her own life.
51. The requirement to ensure that any request for assisted dying is voluntary, clear, settled and informed is a critical safeguard that is common in jurisdictions in which assisted dying is currently permitted.
52. Depending on the legislation in those jurisdictions it may be the duty of the medical practitioner who is assisting the death to ensure they are satisfied the person meets these requirements, or it may form part of a pre-approval process overseen by a panel, Court or tribunal. (See paragraphs 105-112)

Voluntary

53. The doctor(s) (or panel/tribunal) must be absolutely confident that an individual is making the request for assisted dying of their own volition, with no persuasion or coercion  by  family  members  or  any  other  person,  whether  for  self-motivated  or altruistic purposes.
54. One fundamental concern of many of those who oppose assisted dying is the possibility that a person is pressured into requesting assisted dying, or feels obligated to do so, where for example, it may result in financial gain or reduce the burden on family members, whether that be a practical burden such as caring for the person or any associated stress or emotional turmoil.

Informed

55. A person requesting assisted dying must be made aware of what the process entails. This  typically  includes  ensuring  that  a  person  is  fully  informed  of  all  available alternatives to relieve their suffering.
56. For example, under Canadian legislation, a person:

• must be informed about counselling services, mental health and disability support services, community services, hospice and palliative care services, and

• must be offered consultations with the professionals providing such services or care, and

• the person reviewing the request for assisted dying must agree that the person requesting has given serious consideration to those other means of alleviating their suffering in the first instance.[16]

Unequivocal and persistent

57. Those reviewing a request for assisted dying must be assured that the request is something the person is certain about and that it is a settled, non-fluctuating, decision. (See also paragraphs 119 and 120 - Period of reflection.)

Capacity of the individual

58. It is proposed that assisted dying is only permitted where a person has capacity to make the decision to end his or her own life. This is a requirement in all jurisdictions where assisted dying is currently permitted.
59. The Capacity and Self-Determination (Jersey) Law 2016 states that a person lacks capacity in relation to a matter if at the material time the person is unable to make his or her own decision in relation to the matter because he or she suffers from an impairment or a disturbance in the functioning of his or her mind or brain.'
60. In the UK Bill, if the practitioner reviewing a person's assisted dying request has doubts as to the person's capacity to make a decision, they must refer them to an appropriate specialist, such as a psychologist, and must take account of their opinion of the person's capacity.

Advanced decision-making

61. Advance decision making, in the context of assisted dying, permits a person with capacity to make an advance request for assisted dying which will apply if, in future, they lack decision-making capacity. It is not proposed that assisted dying is permitted in Jersey where an advance decision has been taken.
62. The Jury did vote by a narrow majority in favour of permitting advance decisions in certain circumstances (see box below) however, given the complexity associated with advanced decision making, it is considered that further consultation and research should be undertaken prior to lodging any associated legislation. This is the only instance where this Proposition does not put forward the majority recommendations of the Jury.
63. In Belgium, the Netherlands and Spain advance decisions are permitted in certain circumstances. In Belgium advanced decision making is restricted to people who are later in an irreversible coma; in the Netherlands and Spain, it may also include people who develop dementia.
64. None of the other jurisdictions referenced in this proposition provide for advanced decision making.

Jury recommendation:

Jury members were asked: "Should assisted dying be possible with an advance decision after losing capacity?"

52.4% of the Jury voted in favour of assisted dying being possible with an advance decision after losing capacity but under certain circumstances.

Proposition ref: Not included in proposition.

Health-related eligibility criteria

65. It is proposed that assisted dying is only permitted where a person has:

• been  diagnosed  with  a  terminal  illness,  which  is  expected  to  result  in unbearable  suffering  that  cannot  be  alleviated  and  where  the  person  is reasonably expected to die within six months; or

• has an incurable physical medical condition, resulting in unbearable suffering that cannot be alleviated.

66. Health-related eligibility criteria in jurisdictions where assisted dying is currently permitted can be broadly grouped into three categories – terminal illness, non-terminal illness and psychiatric illness. Different jurisdictions permit different combinations of these categories (See Table 1, after paragraph 17). For example:

• some  US  States,  including Oregon,  some  Australian territories  and New Zealand only permit those with a terminal illness to request an assisted death

• in Canada, currently those with terminal illness or non-terminal illness, but not psychiatric illness can request assisted dying (however, psychiatric illness will be included from March 2023)

• in the Netherlands and Belgium those with terminal illness, a non-terminal illness or a psychiatric illness may request assisted dying.

Terminal illness; suffering and timeframe

67. As set out above, it is proposed that assisted dying is permitted where a person has been diagnosed with a terminal illness, which is expected to result in unbearable suffering that cannot be alleviated and is reasonably expected to die within six months i.e. there are two conditions associated with the terminal illness:
    1. expectation of unbearable suffering that cannot be alleviated
    2. expectation of death within six months
68. A terminal illness is not always associated with unbearable suffering and, if the person is not enduring such suffering, it is not clear why assisted dying should be permitted, although it should be noted that under Oregon legislation24 and the UK Bill25, there is no requirement for those with a terminal illness to be experiencing suffering or for unbearable suffering to be expected at a future date.
69. The requirement for the expectation of unbearable suffering', combined with death within six months', provides for where a person is terminally ill, will die in a short time frame and will, during the course of that time, experience unbearable suffering which

24 Oregon Health Authority : Oregon Revised Statute: Oregon's Death with Dignity Act : Death with Dignity Act : State of Oregon

25 Assisted dying bill UK 2021.pdf defines terminal illness as "an inevitably progressive condition which cannot be reversed by treatment, and as a consequenceis reasonably expected to die within six months."

cannot be alleviated, as distinct from where a person has a terminal disease but it not suffering or is not expected to suffer.

70. In the event that a person is already experiencing unbearable suffering, they are provided for as per the unbearable suffering section' below.
71. In some jurisdictions, such as Oregon and the UK Bill, a six-month timeframe is associated with the terminal illness. In the UK, the Welfare Reform Act 2012 provides a legal definition of terminal illness that links it to a 6-month life expectancy.[17] This is in contrast to the consultation on the Scott ish Bill which defines terminal illness as a progressive disease, which can reasonably be expected to cause their death, but with no associated timeframe.
72. Medical professionals are clear as to the difficulty in accurately predicting life expectancy for malignant conditions such as cancer, and even more so for degenerative disease such as motor neurone disease and multiple sclerosis.[1] This means it is potentially the case that someone who has chosen an assisted death solely on the basis that they are expected to die within six months may actually have lived for more than six months. This potential risk would be counterbalanced, albeit not completely eradicated in Jersey, by the proposed additional requirement of the expectation of unbearable suffering, in addition to the six-month timeframe – i.e. two conditions must be met.
73. Where a person is already experiencing unbearable suffering, the difficulties associated with predicting life expectancy are not as problematic, as it is proposed that assisted dying is available in Jersey for people who are experiencing unbearable suffering, which cannot be alleviated, regardless of how long they may potentially live.

Unbearable suffering

74. Definitions of unbearable suffering are broadly similar across jurisdictions that provide for assisted dying where a person is experiencing unbearable suffering. The definitions acknowledge that the condition which gives rise to the suffering is incurable, but not necessarily terminal, and that the suffering cannot be alleviated, for example:

• in the Netherlands legislation states that the person must be experiencing constant and unbearable suffering with no prospect of improvement

• in Canada the legislation requires a "grievous and irremediable medical condition" and that the person must be in an advanced state of decline that cannot be reversed and experience unbearable suffering that cannot be relieved under conditions that the individual considers acceptable

• in Spain legislation states a person must experience constant and intolerable suffering, and there is a great probability that such limitations will persist over time without the possibility of cure or appreciable improvement.[18]

Assisted dying and non-terminal illness

75. Providing for assisted dying on any grounds except for terminal illness is opposed by some, including people with disabilities. The UN Special Rapporteur on the rights of persons with disabilities is clear that being able to end one's own life because of a non-

terminal condition or illness entails making assumptions – from the perspective of a non-disabled person - about the quality and worth of the life of a person with a disability or incurable condition.28

76. The wording of this proposition makes no value judgement on individual conditions or disabilities, or the resulting quality of life for any individual. The proposed eligibility criteria for assisted dying rests on the unbearable suffering' that arises from an incurable physical condition not on the incurable physical condition, in and of itself.
77. The notion of unbearable suffering' is self-determined by an individual. The individual would need to confirm that they are suffering to the extent that they feel they cannot continue to live, and this would subsequently require verification by doctors (and possibly the Courts/tribunal). Such unbearable suffering' may be felt both by those who do, and do not identify, as having a disability.

Jury recommendation:

Jury members were asked a two-part question related to health criteria. For Part 1, Jury members were asked: "Who should be eligible for assisted dying related to health?"

The Jury's overall preference was for either those with a terminal illness (with limited life expectancy) or those experiencing unbearable suffering to be eligible for assisted dying – 69.6%. Proposition ref: a(i)

Mental health conditions / psychiatric illness

78. The  Jury  recommended  that  assisted  dying  eligibility  criteria  should  not  include suffering caused by a mental condition, even though it is provided for in some other jurisdictions, including the Netherlands and Belgium, and in Canada from March 2023 (See Table 1, after paragraph 17).

79. The inclusion of psychiatric illness in assisted dying criteria has resulted in some high- profile cases in the Netherlands and Belgium where younger people with psychiatric illness have been legally permitted to end their lives via assisted dying. This includes:

• a 29-year-old woman who was granted an assisted death in 2018. She had no physical  illness,  but  had  diagnoses  for  chronic  depression,  attachment disorder, anxiety and psychoses29

• a family in Belgium who is pursuing ongoing legal action, following their 38- year-old sister's assisted death, believing that her wish to die was the result of a failed relationship and not an "incurable disorder.30 31

80. There was also significant media coverage of a Dutch teenager whose death was initially wrongly attributed to euthanasia arising from mental suffering as a result of a complex mental health history, but in fact died as a result of withdrawal of treatment after refusing food and drink.32

81. Those in favour of permitting assisted dying in response to psychological suffering, state that psychological suffering should not be differentiated from physical suffering.

28 OHCHR | Disability is not a reason to sanction medically assisted dying – UN experts 29 The troubled 29-year-old helped to die by Dutch doctors - BBC News

30 Belgium euthanasia: Three doctors cleared in landmark trial - BBC News

31 New trial for doctor who carried out euthanasia on Tine Nys (brusselstimes.com)

32 Why Dutch teenager Noa's tragic death was misunderstood - BBC News

Those opposed state that suicidal thoughts fluctuate, and that people with treatable mental health conditions might die through assisted dying even where their condition may be deemed treatable.

Jury recommendation:

Jury members were asked: "If they chose unbearable suffering, should this include suffering caused by a mental condition?"

The Jury voted that the eligibility criteria for health should not include suffering caused by a mental condition – 59.1%.

Proposition ref: a(i)

Residency status

82. The Jury recommended that assisted dying should only be available to Jersey residents. This is in line with the majority of jurisdictions where assisted dying is currently permitted, the exception being Switzerland where non-residents are eligible. Suicide tourism' is the term generally used to describe the practice of individuals travelling to access an assisted death in another jurisdiction.
83. Jersey  may be  the  first  jurisdiction  in  the  British  Isles  to permit  assisted  dying, depending on decisions taken by the Assembly and the UK Parliament. If provision is made available in Jersey to non-residents, ahead of UK provision, this would likely increase the demand for assisted deaths on-Island, which would impact on planning and service provision even if there was a non-residents charge.
84. As set out in Section G: Resources and Financial Implications, it is estimated that the numbers of Jersey residents seeking to access an assisted dying service would be between 2 to 38 people per year. This would potentially increase if the service was available to non-residents.
85. If the States Assembly decide to accept the Jury's recommendation of residents-only provision, there will be a requirement to determine what is meant by resident' in this instance. In the UK Bill, residency requirements are defined as has been ordinarily resident in England and Wales for not less than one year.' In Jersey at present, we do not have an existing definition of ordinarily resident'.
86. Revisions to the Control of Housing and Work (Jersey) Law 2012 (CHWL) covering the residential and employment status of persons in Jersey are due to be debated by the Assembly by Q1 of 2022. It is therefore proposed that the definition of resident' for the purposes of assisted dying legislation will be developed in line with the revised CHWL, so that the definition is equitable and in-line with other services available to residents.

Jury recommendation:

Jury members were asked the question: "Should assisted dying only be for Jersey residents?" The majority of the Jury voted yes, assisted dying should only be for Jersey residents – 81%. Proposition ref: b

SECTION C: MODES OF ASSISTED DYING

87. It is proposed that both Physician Assisted Suicide (PAS) and euthanasia should be permitted modes of assisted dying Jersey.

Physician Assisted Suicide

88. Physician  Assisted  Suicide  (PAS)  is  where  a  doctor  provides  the  means  and/or assistance to the patient to enable the patient to end their own life. For example, a health professional may prescribe a lethal dose of medication for the patient to self-administer, either with or without assistance.
89. PAS is currently the only mode of assisted dying permitted in Oregon (and other US states),  Switzerland  and  some  Australian  states  (including  Victoria  and  Western Australia). Some jurisdictions permit both PAS and euthanasia.
90. The duties placed on assisting health professionals varies between jurisdictions for example, in Oregon, the health professional is not required to remain with the person when they take the medication, however, in other jurisdictions they are.
91. The UK Bill proposes that the assisting health professional must remain with the person until the person has self-administered the medicine and died (or decided not to self- administer the medicine), and that they are to be regarded as remaining with the person if they are in close proximity to, but not necessarily in the same room as, the person.
92. The UK Bill also sets out how medicines should be administered, noting that an assisting health professional may

1. prepare that medicine for self-administration by that person;
2. prepare a medical device which will enable that person to self-administer the medicine; and
3. assist that person to ingest or otherwise self-administer the medicine; but the decision to self- administer the medicine and the final act of doing so must be taken by the person for whom the medicine has been prescribed.33

Euthanasia

93. Euthanasia, in the context of assisted dying typically involves a health professional administering a lethal dose of medication to a person after that patient has requested euthanasia. It is the health professional, not the patient, who carries out the act that causes death.
94. Belgium is unique in that euthanasia is the only permitted mode of assisted dying (PAS is not also permitted). Legislation in Canada, New Zealand, Spain and the Netherlands permits both PAS and euthanasia. In the Netherlands, where both PAS and euthanasia have been available to citizens for 20 years, the majority of those requesting assisted dying choose euthanasia i.e. they wish the health professional to carry out the act that causes their death.
95. Views  on  PAS  and  euthanasia  differ  among  the  public  and  within  the  medical community, and primarily, revolve around notions of patient autonomy and the inherent role of medical professionals to preserve life.

33 Assisted Dying Bill [HL] - Parliamentary Bills - UK Parliament

96. Some support PAS because it gives people who are suffering ultimate autonomy over their life and provides a degree of separation between the heath professional, whose primary role is to help preserve life, and the act of making death happen.
97. Others support euthanasia, because it is available to all, including those who are physically unable to self-administer medication, and because they believe the act is best completed  by  someone  with  medical  experience.  Many  regard  euthanasia  as  an extension of health professional's role, as they work to carrying out what is in the best interests of a patient because it accords with the patient's wish.

Jury recommendation:

Jury members were asked: "What mode of assisted dying should be permitted in Jersey?" The majority of Jury members supported both Physician Assisted Suicide (PAS) and euthanasia as the mode of assisted dying that should be permitted – 65%.

Proposition ref: a(ii)

SECTION D: SAFEGUARDS AND PROCESSES

Introduction

98. Whilst the introduction of assisted dying legislation may provide a right to die under strictly defined legal criteria, such legislation has the potential to bring numerous serious risks. Thorough, robust and well understood safeguards will be required if assisted dying is to be permitted in a manner that minimises risk for those requesting assisted dying and those who assist.

Vulnerable groups

99. Many who oppose assisted dying, do so for the fear of lack of protections and raise particular concerns for vulnerable people. In its broadest sense, vulnerable' or the potential to be vulnerable would appropriately describe any individual seeking an assisted death, hence the need for universally robust safeguards. However, within this, specific groups can also be identified as vulnerable groups'– including those who lack capacity; older people; those with a disability and those who are at risk of abuse.

100. Safeguarding processes should consider specific measures, for specific risks to specific

vulnerable groups.

101. Certain safeguards are referenced in Sections B, C and D of this report. These include:

• making assisted dying available only to adults (aged 18 or over) who have capacity and a voluntary, clear, settled and informed wish to end his or her own life;

• a pre-approval process, and/or the independent of confirmation of eligibility by at least 2 doctors

102. Described in this section are additional safeguards which were noted or recommended

by the Jury, and which seek to further protect both individuals requesting assisted dying and health professionals involved in the process. Beyond this, if assisted dying is permitted in Jersey:

• legislation  will  need  to  be  brought  forward  providing  for  the  associated regulatory standards,

• operational standards will need to be developed, and

• training and standards will need to be determined.

103. All of the above, would be developed in consultation with key stakeholders, including

the Jersey Care Commission, UK professional standards bodies, medical professionals and representatives from relevant voluntary and community sector organisations who represent the voice of vulnerable groups.

104. The Convention on the Rights of Persons with Disabilities (UNCRPD) is not extended

to Jersey. Whilst the UNCRPD provides for the protection of rights of people with disabilities, the fact that it is not currently extended to Jersey does not mean that the rights of disabled people would not be protected when developing assisted dying policy and legislation. As with all primary legislation the Minister would be required to provide a statement confirming compatibility of the legislation with the European Convention on Human Rights, in accordance with the Human Rights (Jersey) Law 2000.

Pre-approval process

105. It is proposed that assisted dying should be permitted in Jersey subject to a pre-approval

process. This pre-approval process may, subject to further consultation, involve a decision made by a court or specialist tribunal.

106. The assisted dying approval process varies by jurisdiction. In Switzerland there is no

formal requirement for any form of pre-approval but, in other jurisdictions, the process typically involves approval and review by two doctors. This is the case in Oregon, the Netherlands, Belgium, Canada and is as proposed in the Scott ish consultation on assisted dying.

107. The Jury recommended, however, that the pre-approval process in Jersey should be

more robust and involve a court or specialist tribunal. Whilst this safeguard is not in place  in  most  jurisdictions,  it  is  proposed  within  the  Spanish  legislation  that  an application must be made to an Assessment and Evaluation Commission'34. It is also included in the UK Bill which proposes that assisted applications are made to the High Court  (Family  Division)  and  that  those  applications  are  countersigned  by  two independent doctors.35

108. If the Assembly were to support a pre-approval process, further consultation would be

carried  out  with  key  stakeholders,  including  but  not  limited  to  local  medical practitioners, the Jersey Care Commission, the Court and the Judicial Greffe, in order to determine the most suitable format for Jersey. It is possible this may involve the creation of an independent panel or tribunal within the Tribunal Service.

109. This would accord with feedback from the Jersey Care Commission who, in dialogue

with the GoJ, previously suggested that, subject to further consultation, they would favour  an  ex  ante'  [before  the  event]  approach  to  assisted  dying  -  such  as  an independent panel considering all requests.

110. Possible disadvantages could include an increased time between a request for assisted dying and approval, which may be problematic for those close to death. This could,

34 BOE.es - BOE-A-2021-4628 Ley Orgánica 3/2021, de 24 de marzo, de regulación de la eutanasia. 35 Assisted Dying Bill [HL] - Parliamentary Bills - UK Parliament

however, be mitigated against in the set up and design of such a panel. In other jurisdictions, for example, Oregon and Canada, whilst there is no court involvement, there are two-track' processes allowing those who are expected to die soon to have their request reviewed in a shorter timeframe.

111. Other possible disadvantages include inequality in terms of access to assisted dying, for

example difficulties in the application process for those with English as an additional language. This could, however, similarly be mitigated against.

112. Perceived benefits of a formal pre-approval process include greater certainty for health

professionals involved in the process, as well as for the individual and their family members. It can also provide separation from those determining eligibility for assisted dying, and those carrying out the act.

Jury recommendation:

Jury members were asked: "Should a court or specialist tribunal be involved in the decision process before an assisted death?"

The majority of the Jury voted for yes, there should be a court or specialist tribunal involved in the decision process before an assisted death – 77.3%

Proposition ref: c

Assistance from doctors and nurses

113. It is proposed that assisted dying should only be permitted with the direct assistance of

registered medical practitioners and registered nurses.

114. This is as per most jurisdictions where assisted dying is permitted, the exception being

Switzerland,  where  assisted  suicide  can  be  provided  by  a  lay  person.  In  some jurisdictions advanced nurse practitioners are permitted to carry out assisted dying without the assistance of a doctor, for example certain provinces in Canada. The UK Bill proposes that a registered nurse can act as an assisting health professional' (as outlined in section C of this report), if authorised to do so by the attending doctor. This could involve delivering the medicine to the person requesting an assisted death and remaining with the person as they self-administer the medicine.

Jury recommendation:

Jury members were asked: "Who can assist/administer assisted dying?"

The  majority  of  Jury  members  voted  in  favour  of  doctors  and  nurses  being  those  who assist/administer assisted dying – 68.4%.

Proposition ref: a(iii)

Conscientious objection clause

115. It is proposed that the law should provide for a conscientious objection clause so that

any nurse, medical practitioner or other professional is not under a legal duty to participate in assisted dying. This would accord with all other jurisdictions where assisted dying is currently permitted.

116. If  the  States  Assembly  decide  to  introduce  legislation  in  Jersey,  all  healthcare professionals (including doctors, nurses, pharmacists and others) should be able to

conscientiously object to supporting someone to request or undertake assisted dying. This reflects current practice in other areas, for example, the termination of pregnancy.

117. It is anticipated that health professionals who do not wish to participate in assisted dying

would make a referral to another healthcare professional who does not conscientiously object.

118. Guidance from the GMC on personal beliefs and medical practice states that doctors

may practise medicine in accordance with their beliefs, provided that they act in accordance with relevant legislation and:

• do not treat patients unfairly

• do not deny patients access to appropriate medical treatment or services

• do not cause distress to patients.36

Period of reflection

119. It is proposed that assisted dying should be subject to a mandatory period of reflection

(a "cooling-off period") which provides for greater certainty as to whether a person's request for assisted dying is persistent and non-fluctuating.

120. Reflection periods, which vary by jurisdiction, may in some cases may be reduced if

the person's life expectancy is short:

Jury recommendation:

Jurors were asked: "Should there be a requirement for a cooling-off period if assisted dying were permitted in Jersey?"

The Jury voted in favour of a cooling-off period – 60% in all circumstances and 40% under certain circumstances.

Proposition ref: a(iii)

Withdrawals of request

121. Similar to a mandatory period of reflection, it is proposed that the law would provide a person with the ability withdraw their request for assisted dying at any stage during the

36 Personal beliefs and medical practice - GMC (gmc-uk.org)

process. Those requesting assisted dying in other jurisdictions are permitted to rescind the request for assistance in dying, at any time and in any manner.

Pre-approved locations

122. It is proposed that assisted dying should only be permitted to take place in pre-approved

locations - which could include hospitals, certain care facilities and private homes - in order that careful oversight can be given to all assisted deaths. This includes making sure the location is suitable for assisted dying to take place, and in the case of private households, that the homeowner does not object.

123. Pre-approved locations may be determined and overseen as part of the associated

regulatory framework. (See regulatory oversight section below).

Other safeguarding considerations  

Regulatory oversight

124. In the event the Assembly agree, in principle, to provide for assisted dying in Jersey,

the  Jersey  Care  Commission  will  be  invited  to  support  the  development  of  the associated regulatory legislation and policy. As Jersey's independent care regulator, it is anticipated that the Jersey Care Commission, working within the provisions of the Regulation of Care (Jersey) Law 2014, will have a defined role in regulating any on- Island assisted dying service. This would require new regulations to be brought forward under the Regulation of Care (Jersey) Law 2014.

Annual reporting

125. Reporting requirements, including annual reporting, would be mandated in legislation

in  order  to  support  robust  regulatory  oversight,  including  in  relation  to  safety, monitoring,  and  research  purposes.  For  example,  to  identify  any  inequalities  or disadvantages within an assisted dying service, based on protected characteristics such as race or disability. Any published information would be anonymised and exclude data which may allow for individuals to be identified.

Training requirements

126. Given  the  significance  and  complexity  of  any  assisted  dying  legislation  a

comprehensive training and information programme would be developed. As well as training on new legislation, this may require additional training in related areas such as capacity and self-determination legislation.

Safeguarding palliative care services

127. Many palliative care organisations, whether in Jersey or elsewhere, are opposed to

assisted dying for a range of different reasons.

128. Some consider palliative care and assisted dying to be incompatible with each other

because palliative care provides for people who may be terminally ill but does not look to hasten death, which is a key component of assisted dying.

129. It is nevertheless the case that:

• palliative care remains a significant and important service to many people who request assisted dying. Research on assisted dying practices in Canada, the U.S. and some

European countries indicates that 74%–88% of people who opt for assisted dying also receive hospice or palliative care services,37

• people who have received palliative care service in Jersey have also made plans for an assisted death in Switzerland. It is presumed that they see assisted dying as being in addition to palliative care, as opposed to instead of palliative care.

130. The  introduction  of  assisted  dying  in  other  jurisdiction  has  generated  legitimate

concerns about the potential for a decline in the funding or development of palliative care, however, research evidence shows that this apprehension has not borne out in Oregon.38Furthermore, in Canada $6 billion was allocated to home and palliative care in the 2017 federal budget, the year after the introduction of assisted dying legislation. $6  billion  represents  a  significant  increase  on  previous  years.39  In  Belgium,  the simultaneous introduction of a euthanasia law and a palliative care law in 2002, signified the equal value placed on both assisted dying and palliative care.

131. As set out in Sections A and G of this report it is not intended that the resources currently

allocated to palliative care, or associated services, would be re-directed to assisted dying services. It is intended that the Assembly would be asked to make additional financial provision for an assisted dying service.

SECTION E: TIMEFRAME

132. The proposition sets out that if the Assembly agree, in principle, to provide for assisted

dying in Jersey, the Council of Ministers will seek to issue law drafting instructions prior to the Election in 2022, with a view to debating draft legislation before 2023.

133. In the event that the Assembly adopts assisted dying legislation, further work would be

required  to  establish  an  operational  service,  to  provide  the  necessary  regulatory framework and standards and to establish the pre-approval tribunal, in the event such a tribunal is provided for in legislation.

134. This timeframe is, in part, dependent on external organisations, as work must be

progressed with key professional stakeholders including the Jersey Care Commission and UK professional registration bodies.

SECTION F: RESOURCE AND FINANCIAL IMPLICATIONS

Areas of expenditure

135. It is proposed that GoJ makes arrangements for the provision of an assisted dying

service. With the exception of Switzerland, where assisted dying is a paid-for service delivered  by  a  third  party,  assisted  dying  services  are  provided  or  facilitated  by governments in other jurisdictions as part of their health services.

136. Further work would be required to determine if the service were to be directly provided by the Government or provided by a third party. In either event, the development of the service and the ongoing delivery will have associated costs. Until assisted dying policy

37 The Relationship of Palliative Care With Assisted Dying Where Assisted Dying is Lawful: A Systematic Scoping Review of the Literature - ScienceDirect

38 View of Legalised Physician-Assisted Death in Oregon (qut.edu.au)

39 Federal Investments in Palliative Care (pbo-dpb.gc.ca)

is  further  developed  an  estimate  of  costs  cannot  be  made.  However,  anticipated expenditure would include:

• legislation development

• training for healthcare and other associated professionals

• awareness raising of legislation, processes and safeguards

• tribunal / pre-approval process set-up

• service costs (staff, medication, equipment, facilities)

• regulatory oversight and reporting function.

Number of assisted deaths

137. Annual costs will vary depending on the number of assisted deaths per year and the

circumstances under which assisted dying was permitted. The figures set out in Table 3 below, provide a projected figure for the Jersey population based on the three main models of assisted dying seen elsewhere – Oregon (& other US states), Canada and Benelux (Belgium, Luxembourg & Netherlands):

Oregon – Physician Assisted Suicide, for residents aged 18+ with a terminal illness, advanced decisions are not permitted.

Canada  -  Physician  Assisted  Suicide  or  euthanasia,  for  residents  aged  18+  experiencing unbearable suffering caused by physical illness, advanced decisions are not permitted.

Benelux - Physician Assisted Suicide or euthanasia (Belgium euthanasia only), for residents including those aged under 18, experiencing unbearable suffering caused by physical or mental illness, advanced decisions are permitted under certain circumstances.

Table 3: Projected number of assisted deaths in Jersey

1. Evidence from other jurisdictions indicates that the number of assisted deaths

in a jurisdiction is likely to present a very small percentage of annual deaths at the outset, but that this may increase year-on-year as assisted dying becomes

established.

Resource requirements

2. It is anticipated that an assisted dying service would require the provision of

additional  funding  within  a  future  Government  Plan.  Resources  currently allocated for palliative care or associated services would not be re-directed to assisted dying.

APPENDIX 1

SHOULD ASSISTED DYING BE PERMITTED IN JERSEY, AND IF SO, UNDER WHAT CIRCUMSTANCES?

FINAL REPORT FROM JERSEY ASSISTED DYING CITIZENS' JURY September 2021

Contents

Foreword – Independent Advisory Panel .....................................................................30 Executive summary ......................................................................................................31 Acknowledgements ......................................................................................................31

1. Introduction ............................................................................................................32

1. Background .........................................................................................................32
2. About assisted dying ...........................................................................................32
3. About citizens' juries ..........................................................................................32
4. About this report .................................................................................................33

2. How the jury worked ..............................................................................................33

1. Roles & responsibilities ......................................................................................33
   2. Supporting participation ....................................................................................34
   3. Citizens' Jury members .....................................................................................35
   4. The Jury Sessions ..............................................................................................37
   5. The Voting Process ............................................................................................38

3. Recommendations from the jury ............................................................................40

1. Summary of Recommendations .........................................................................40
2. Initial vote results: whether assisted dying should be permitted .......................40

3. Second vote results: the circumstances under which assisted dying should be permitted ...................................................................................................................42

4. Final vote results: Should assisted dying be permitted in jersey based on these circumstances............................................................................................................52

5. Opposing  views  –  summary  statements  from  Jury  members  opposing  the outcome of the Jury ..................................................................................................53

4. Key messages from the jury for the States Assembly ............................................53

1. Dying with dignity .............................................................................................53
2. Personal choice ..................................................................................................54
3. Views against assisted dying .............................................................................55
4. Protecting vulnerable people .............................................................................55
5. Listen to the Jury ...............................................................................................55

5. Members' experience of the jury ............................................................................56

1. Reflections on the Jury process ..........................................................................56
   2. Final Evaluation of the Jury ...............................................................................58

6. Conclusion ..............................................................................................................61

7. Appendix ................................................................................................................62

Foreword – Independent Advisory Panel

Debates on assisted dying and the potential introduction of legislation are taking place across the globe. In recent years a number of parliaments have debated the issue; some close to home like Guernsey and the Isle of Man, others much further away, such as New Zealand. Some of these debates have resulted in legislation change, others have voted to maintain the status quo.

In early 2020, the Minister for Health and Social Services made a commitment to commission a citizens' jury, following community interest on assisted dying at a local level. A citizens' jury is a method of deliberation, where a small group of people, broadly representative of the community, come together to carefully consider an issue. Citizens' juries have been used across the world to look at complex issues that are full of moral and ethical considerations to help make recommendations. They help inform the wider debate, and crucially, provide insight for our elected representatives on the community's  considered view of  a  particular  issue.  The States  Assembly  are the decision  makers  with  the  authority  to  decide  what,  if  any,  changes  are  made  to legislation in relation to assisted dying in Jersey. The Council of Ministers has made a commitment to bring the matter forward for debate before the end of 2021 and these Jury recommendations will form the basis of their report and proposition.

We  were  selected  as  members  of  the  Independent  Advisory  Panel  to  provide  an objective voice to advise, check and challenge throughout the Citizens' Jury process. Having overseen the design of the Citizen's Jury and having observed the delivery of the sessions, we can confirm that it is our view that the Jury process was appropriate, balanced and robust. We were extremely impressed by the way that Involve, and in particular the Lead Facilitator, handled the whole jury process from beginning to end. It is also our view that this report on the recommendations reflects this process.

This report sets out the Citizens' Jury process in full, including further explanation of the role of the Independent Advisory Panel, and all those who contributed to the process. The report also goes on to set out the voting results and recommendations of the Jury.

The Panel would like to thank all those involved in the Jury, including all the speakers who gave their time to share their views, experience and expertise and answer the many questions from the Jury members. And finally, we wish to thank the Jury members themselves for their dedication to the process and their commitment to undertaking such an important role in representing the wider community.

Executive summary

In Spring 2021, the Minister for Health and Social Services commissioned a citizens' jury of 23 people from across Jersey to consider the question:

"Should assisted dying be permitted in Jersey, and if so, under what circumstances?"

The Jury heard from and questioned a range of speakers on this topic, shared their views in discussions and completed three different votes to provide a final response to the question.

This report describes in detail the work of the citizens' jury, including its oversight structures, how members were recruited, the structure and content of the Jury meetings, and what Jury members thought about the experience of taking part.

The recommendations from the Jury will inform the States Assembly debate on assisted dying before the end of 2021.

Summary of Recommendations

78% of Jersey Assisted Dying Citizens' Jury members agreed assisted dying should be permitted in Jersey under the following circumstances:

• where a Jersey resident, aged 18 or over, has a terminal illness or is experiencing unbearable suffering and wishes to end their life;

• subject to stringent safeguards including a pre-approval process; a mandatory period of reflection and consideration; with the direct assistance from doctors or nurses only, as opposed to non-medically qualified staff.

Acknowledgements

A very big thank you to Mind Jersey for their unwavering support of the Jury members and the delivery team's mental health and wellbeing throughout this Jury process. Thanks to all the Independent Advisory Panel; expert and content advisors and Jury speakers who contributed to this process. Particular thanks to Dr Alexandra Mullock and Professor Suzanne Ost for the time they gave to this process.

1. Introduction

The Jersey Assisted Dying Citizens' Jury consisted of 23 randomly selected Jersey residents who worked together across 10 sessions between March to May 2021 to answer the question:

"Should assisted dying be permitted in Jersey, and if so, under what circumstances?"

The Jury heard from and questioned a range of speakers on this topic, shared their views in discussions and across three different votes to provide a final response to the question.

This recommendation will inform a States Assembly debate on assisted dying before the end of 2021.

1. Background

In February 2020, the Minister for Health and Social Services committed to establishing a citizens' jury to consider whether assisted dying should be permitted in Jersey. This followed an e-petition in 2018 signed by 1,861 people calling for the States Assembly to amend Jersey law to allow for assisted dying. There was also an online public survey, a GP and doctors' survey and a public meeting, which indicated that there are people in Jersey who support assisted dying. The development of the citizens' jury was delayed by the Covid pandemic, preparatory work on the design of the jury recommenced in October 2020 and the decision was made to move the process to an online format.

2. About assisted dying

Assisted dying is where a person suffering from a terminal illness or a condition that causes unbearable suffering, is helped to die. They are usually assisted by a healthcare professional who either provides, or administers, lethal drugs.

Agreement  on  exact  definitions  of  assisted  dying  varies  between  individuals, organisations and jurisdictions. It is often used as an umbrella term to encompass both assisted suicide (providing someone the means to end their own life) and voluntary euthanasia (where one person causes another person's death with their consent).

3. About citizens' juries

Citizens'  juries  are used  all  over  the world  to  look  at  complex  issues  and  make recommendations. It  is  a  method  of  deliberation,  where  a  small  group  of  people (typically between 12 and 24), broadly representative of the demographics of a given area, come together to carefully consider an issue. Citizens' juries can be used to consider different policy issues and are particularly effective for issues that are full of moral and ethical considerations and controversial questions, where knowledge is contested  and  there  might  be  important  social  repercussions.  Normally  citizens deliberate a clearly framed question.

Throughout  the  sessions,  jury  members  listen  to  expert  witnesses.  These  include impartial experts, stakeholders and advocates representing all sides, so that the jury can receive a balanced and complete picture of the issue. There is time allotted for jurors to ask questions of the witnesses and to deliberate what is heard. After all the hearings have been completed, the rest of the time is set aside for the jurors to have final deliberations on the issue and answer the question. They'll reach a decision following deliberation on the issue, either by consensus or voting.

4. About this report

This report contains the views, ideas and questions shared by jury members during jury sessions and the voting process. It does not seek to interpret the information, other than grouping it into relevant themes. Instead, it presents the thoughts of the Jury members as they deliberated the question "Should assisted dying be permitted in Jersey, and if so, under what circumstances?".

This report has been shared with all jury members and the Independent Advisory Panel to ensure that the information provided about the Jury process is factually accurate.[20]

2. How the jury worked

1. Roles & responsibilities

The Jersey Assisted Dying Citizens' Jury was supported by an independent advisory panel, content oversight advisers, expert advisers, Sortition Foundation and a delivery team consisting of Involve and Government of Jersey policy officers.

Independent advisory panel

An independent advisory panel was set up to oversee the planning and ensure the integrity of the Jury process.

The Panel was established by the Minister for Health and Social Services with members selected based on their previous contributions to the community and their known ability to be impartial and to provide an objective voice to advise, check and challenge the Citizens' Jury process. Those members were:

• Gillian Arthur, MBE

• Michael De La Haye, OBE

• James Le Feuvre

• Dr Helen Miles

The role of the Panel was to maintain the integrity of the Jury process. The Panel provided advice and scrutiny, helping ensure the Jury was balanced, and that the process of evidence selection was both robust and comprehensive.

Further detail including the Panel's Terms of Reference and Panel meeting notes can be found on the Government of Jersey website.[21]

The Panel collectively met five times, plus each Jury session was observed by 1-2 Panel members.

Content oversight & expert advisers

The content oversight team consisted of three independent subject matter experts who supported the Independent Advisory Panel in ensuring that the design of the Jury sessions was balanced and comprehensive in terms of content, selection of speakers and evidence presented. The content oversight advisers were selected as leading authorities on assisted dying and for their range of personal positions on the subject. They were:

• Professor Richard Huxtable (University of Bristol)

• Professor Emily Jackson (London School of Economics)

• Professor  David  Jones  (St  Mary's  University  and  Director  of  Anscombe Bioethics Centre, Oxford)

Two further expert advisers assisted the delivery of the Jury in a more hands on' role, attending each Jury session to answer questions and provide clarifications on the subject. The expert advisers were:

• Dr Alexandra Mullock, Senior Lecturer in Medical Law at the University of Manchester

• Professor Suzanne Ost, Law School, Lancaster University

Sortition Foundation

The  Sortition  Foundation  promotes  the  use  of  sortition  (random  selection)  in participatory  democracy  processes.  The  Sortition  Foundation  was  responsible  for recruiting people to take part in the Citizens' Jury. Their aim was to ensure the Citizens' Jury was broadly reflective of the island of Jersey.44

Involve

The Involve Foundation is the UK's leading public participation charity, with a mission to put people at the heart of decision-making. Involve ran the Citizens' Jury – facilitating and designing the process by which the Jury members learnt, considered and came to their recommendations.

Involve  wrote  this  report,  sharing  it  with  all  Jury  members  and  the  Independent Advisory Panel to ensure factual accuracy.45

Government of Jersey

The Minister for Health and Social Services commissioned the Jury. Policy officers from  the  Government  of  Jersey's  Strategic  Policy,  Planning  and  Performance Department provided logistical and planning support for the delivery of the Citizens' Jury.

Those policy officers plus staff from Involve collectively formed the delivery team which oversaw the practical arrangements and delivery of each session.

2. Supporting participation

The Assisted Dying Citizen's Jury took place online. Jury members who were not confident in using online devices and video calls were provided with one-to-one support and training to ensure they could participate fully.

Equipment was made available to those who did not have access to suitable broadband and internet enabled devices.

Other  support  needs  were  also  met  for  example,  caring  responsibilities  and  any additional communication support or support to access information.

44 https://www.sortitionfoundation.org/ 45 https://www.involve.org.uk/

Recognition of involvement and time commitment

A  payment  of  £300  was  made  to  Jury  members  to  recognise  their  significant commitment across the 10 Jury sessions, each of which took two to two-and-a-half hours.

Wellbeing support

Assisted dying is a personal and sensitive topic. This was recognised in the design of the  Jury  process  plus  access  to  a  wellbeing  and  information  pack  prior  to commencement of Jury sessions.

Sessions were designed to allow time for Jury members to process the issues discussed, plus a breakout space was available to provide support to any Jury member that required it. This breakout space was facilitated by Mind Jersey who also led a decompression exercise at the end of each session and offered follow up support outside of the Jury sessions.

Thank you to Mind Jersey for their time, support and commitment to the wellbeing of everyone involved in the Jury process.

Independent facilitation

During sessions, Jury members often worked in small groups with a group facilitator. Those who supported the Jury are highly experienced independent facilitators provided by Involve and trained in deliberative processes. The facilitators were there to ensure everyone in the group had an opportunity to contribute to the discussions.

Facilitators also supported Jury members to create a group agreement on how the Jury would work together. Please see Appendix A for an outline of the key principles of this agreement.

3. Citizens' Jury members

4,600 invitations were sent to a random sample of Jersey addresses in January 2021. Anyone aged 16 or over who lived at those addresses was invited to register their interest in participating in the Jury.

In total, 477 Islanders registered their interest. A Citizens' Jury typically consists of 18 to 24 people so not everyone who registered their interest was selected. A process called sortition was used to randomly select which of the 477 interested Islanders would participate, ensuring that those selected would broadly represent the Island's population across the following criteria:

• age (source: Opendata.gov.je 2018 Population Estimate)

• gender (source: Opendata.gov.je 2018 Population Estimate)

• location (source: Jersey Opinions and Lifestyle Survey 2020)

• socio economic status, based on housing tenure (source: Jersey Opinions and Lifestyle Survey 2020)

• place of birth (source: Jersey 2011 census data)

• attitude towards assisted dying (source: British Social Attitudes Survey 34

(2017))

The demographic make-up of Jury members:

Jury members did not need prior knowledge about assisted dying but did require a willingness to listen to the information presented and share views with other Jury members.

Jury members were asked to respect the anonymity of all other members.

No identifiable details about Jury members will be made public unless any individual member chooses to publicly share their details.

4. The Jury Sessions

Overview of Jury sessions & evidence

The Jury met over 10 two to two-and-a-half hour sessions. These sessions included presentations from speakers, discussions with speakers and small group deliberations about what Jury members thought about the topic.

Below is an overview of the 10 Jury sessions which were split into four blocks throughout March – May 2021:

See Appendix B for detailed outline of sessions[22]

How evidence was selected

The content oversight team and expert advisers worked closely with the delivery team to identify a range of speakers for the 10 Jury sessions.

The content oversight team was responsible for approval of speakers and evidence provided to the Jury, considering the following criteria:

• Overall  balance  &  diversity  of  views/experience/backgrounds  across  all selected speakers

• Experience (lived or professional)

• Profile and/or professional expertise of speaker

• Location – inclusion of local and international voices, including jurisdictions where assisted dying is currently permitted

• Openness – being open to responding to a brief and engaging with participant questions

• Presentation skills – ability to present their view/argument clearly and concisely to the Jury

• Speakers to  provide context to Jury  – i.e. explain whether speaking in a professional capacity, giving personal views or representing groups or cohorts of people (for example, faith groups, campaign groups etc.)47

Given the vast number of individuals and experts with experience of the subject, and the focus on deliberation time required during a jury process, it was not possible to invite to speak all those with a view on the subject area.

5. The Voting Process Explanation of the voting process

The key function of the Jury was to deliberate and vote on the following question:

"Should assisted dying be permitted in Jersey? And, if so, under what circumstances?"

There was a three staged voting process, with different votes taking place following different Jury sessions.

Vote 1: The initial in principle' vote followed session 8

Vote 2: The vote on the circumstances followed session 10

Vote 3: The final vote was a week after the second vote

Jury members spent time deliberating with each other prior to the voting. Several key votes were used to find out the Jury's views and preferences.

1. Initial in principle' vote

The initial vote focused on the first part of the question: In principle, do you agree or disagree that assisted dying should be permitted in Jersey? Results from the initial vote shaped Jury discussions in sessions 9 and 10 and the format of the second vote.

As the majority of Jury members answered yes, I agree' in the initial vote, sessions 9 and 10 focused on the circumstances under which assisted dying should be permitted.

If the majority of Jury members had answered no' in the initial vote, sessions 9 and 10 would have focused on the reasons why assisted dying should not be permitted and there would have been no further vote on the circumstances.

47 This criteria is published here: Jersey Assisted Dying Citizens' Jury meetings (gov.je)

2. Vote on circumstances

The second vote focused on the second part of the question i.e. the circumstances under which assisted dying should be permitted.

The second vote used a preferential voting process to help identify clear preferences (i.e., some of the questions asked Jury members to indicate their first and second preference, rather than answering yes' or no'). The second vote was based on voting principles used for other citizens' juries and citizens' assembly processes.

3. Final vote

The final vote provided Jury members an opportunity to vote for or against assisted dying, taking account of the circumstances identified via the second vote.

Throughout the voting process Jury members were provided opportunities to:

• issue key messages to States members (as set out in Section 4 of this report), and

• make additional comments on matters included in the voting process.

This allowed for the breadth of views of individual Jury members to be captured throughout the process, including, where individual Jury members did not vote with the majority.

3. Recommendations from the jury

1. Summary of Recommendations

78% of Jersey Assisted Dying Citizens' Jury members agreed assisted dying should be permitted in Jersey under the following circumstances:

• where a Jersey resident, aged 18 or over, has a terminal illness or is experiencing unbearable suffering and wishes to end their life

• subject to stringent safeguards including a pre-approval process; a mandatory period of reflection and consideration; with the direct assistance from doctors or nurses only, as opposed

to non-medically qualified staff.

2. Initial vote results: whether assisted dying should be permitted

Jury members were asked the question: "In principle, do you agree or disagree that assisted dying should be permitted in Jersey?"

The majority voted in favour of the principle of permitting assisted dying in Jersey, with 48% strongly agreeing and 26% tending to agree.

Figure 1: In principle, do you agree or disagree that assisted dying should be permitted in Jersey?

In the session prior to voting, Jury members heard a recap of all the evidence presented during the Jury sessions (see Appendix B). Members then engaged in group discussions about what would inform their answer to the Jury question, and explored the reasons underpinning their intended answer.

Jury members covered the following areas in these discussions: implications for medical staff; support around the assisted dying process; what further information Jury members wanted; people's quality of life; cost and funding the process; ethical issues; how this issue relates to other scientific developments; governance and decision-making around the assisted dying process; palliative care; personal stories and people needing to have a choice. More detailed notes from these group discussions are included in Appendix C.

Jury members were also asked to provide additional comments on the voting forms in response to each question if they wanted to. Appendix D sets out in full those additional comments.

3. Second vote results: the circumstances under which assisted dying should be permitted

The second vote focused on the circumstances under which Jury members felt assisted dying should be permitted in Jersey.

Jury members were asked to vote on eight questions. The voting results for each question are set out below, followed by a summary of the group discussions that preceded each vote.

The results from the second vote are split into three sections which reflect the structure of the final Jury sessions:

• eligibility criteria

• mode

• regulations & safeguards.

Assumptions related to regulations & safeguards

Prior to discussing the circumstances in which assisted dying should be permitted, the Jury was asked to assume that the following safeguards would be put in place if assisted dying was permitted in Jersey.

The assumed safeguards are consistent features  of assisted dying legislation or regulations in other jurisdictions. They include:

• conscientious objection clause for medical professionals

• certain approved locations: e.g. at home, hospital, specialist facility/ pre- approved location

• format of request: usually a written, witnessed request

• withdrawal of request: permitted at any time

• reporting: general reporting on assisted dying in Jersey would take place on a regular basis (with no disclosure of individual identifying details)

Eligibility Criteria

There were three questions related to assisted dying eligibility criteria focusing on residency, health and age.

Residency criteria

Jury members were asked the question: "Should assisted dying only be for Jersey residents?"

The majority of the Jury voted for yes, assisted dying should only be for Jersey residents.

Figure2: Should assisted dying only be for Jersey residents?

Jury members had group discussions on the question of residency criteria. These discussions covered the advantages and disadvantages of a wide range of themes that are summarised below.

Jury members discussed the possibility of assisted dying tourism, whether it was Jersey's responsibility to provide this service for other countries and complexities around Jersey residency definitions. This was also linked with the possibility of negative media coverage that assisted dying tourism could bring.

The possibility of this being a staged process was discussed with only Jersey residents first and then the service offered more widely. Jury members gave the example of Jersey being a closer option for some people (for example UK residents) than somewhere like Dignitas.

Jury members talked about the issue of accessibility of the service too. This included whether it could help prevent people having to travel abroad and allowing people to have their family nearby if they did want an assisted death. Linked to this, the cost implications were considered around how many people would use the service and level of infrastructure in place to support fair access to the service.

Jury members talked about how residents-only access is the most common model in other countries and explored regulation and monitoring implications too.

They also discussed how closer links with local health professionals could be possible along with the potential implications for Jersey health professionals if the service was introduced.

The detailed notes of the residency criteria discussion are captured in Appendix E. Additional comments Jury members added to the second vote form are in Appendix F.

Health criteria: Part 1

Jury members were asked a two-part question related to health criteria. For Part 1, Jury members were asked: "Who should be eligible for assisted dying related to health?"

The Jury's overall preference was for either those with a terminal illness (with limited life expectancy) or those experiencing unbearable suffering to be eligible for assisted dying.

Figure 3: Part 1: Who should be eligible for assisted dying related to health?

Health criteria: Part 2

Jury members were asked: "If they chose unbearable suffering, should this include suffering caused by a mental condition?"

The Jury voted that the eligibility criteria for health should not include suffering caused by a mental condition.

Figure 4: Part 2: If you chose unbearable suffering, should this include suffering caused by a mental condition?

Jury members explored this question in depth prior to voting. Their discussions covered many different questions and perspectives on the issue of health criteria. They discussed how challenging this issue is and the need to break down types of conditions, and if mental conditions/illnesses were included.

Jury members talked through considerations around timing of a diagnosis and the possibility of inaccurate diagnosis or medical trials that could have an impact on an individual's condition.

The groups discussed the need for people to have a sense of empowerment, choice and control on the whole process and a chance to alleviate unbearable suffering and have peace of mind. Jury members discussed how the decision around which health criteria decisions are based on for permitting assisted dying might impact on making the process fairer and more accessible too.

Jury members raised cautions around this question including concerns that vulnerable people may fall between the net or individual's circumstances can change and how that would be managed. They also talked through wider implications for family involvement in  both  positive  (inclusive)  and  negative  ways  (families  having  their  own agenda/coercion).

The Jury talked about questions around definitions and the need for clearer definitions of mental capacity, unbearable suffering, terminal illness and incurable/irreversible conditions. They also looked at considerations around starting with a narrow remit for the process of assisted dying or whether it is better for people in Jersey to have a clear understanding from the outset of the possible widest remit of assisted dying (including unbearable suffering). Linked to this point, Jury members also discussed whether there should be a focus on physical and terminal illness only. This was in case including other conditions/illnesses  might  prevent  assisted  dying  being  possible  at  all  due  to  the increased bureaucracy these additional aspects might create.

Jury members explored further whether assisted dying should be physical conditions only or mental conditions too. They discussed the implications of including a greater number  of  conditions  or  fewer  conditions.  They  also  considered  the  impact  on suggesting assisted dying to those who had not considered it; safeguarding concerns and whether there was potential for a slippery slope in future around this area. The groups talked through questions of inclusivity if only some mental health conditions are included. Jury members also discussed examples such as the Canadian model which will [in 2023] include both mental and physical conditions in the criteria and looked at the implications of how a mental condition can manifest into a physical condition and vice versa.

Additional  points  from  this  discussion  are  captured  in  Appendix  E.  Additional comments Jury members added to the second vote form are in Appendix F.

Age criteria

Jury members were asked: "Who should be eligible for assisted dying relating to age criteria?" (Jury members were asked to state their first and second preferences).

If Jury members' first preferences alone are taken into account, the Jury voted for "Over 18s only" but this option does not achieve an overall majority.

If Jury members' second preferences are also considered, the vote results in a near tie between  "Over  18s  only"  and  "Anybody  of  any  age".  Therefore  the  Jury recommendation is not definitive.

Figure 5: Who should be eligible for assisted dying relating to age?

Jury members discussed age criteria based on assisted dying being permitted for over 18s only; for under 18s as well and for under 18s only in limited circumstances.

The Jury considered what existing laws allow or don't allow for under 18s and discussed different stages of assisted dying being introduced. The question of choice, children being heard and whether children should have the same sense of ownership as adults over their lives were all discussed.

Jury members talked about whether those with terminal illness and under 18 should be given different considerations and how this would be managed including the question of consent (the child's consent, parental consent and medical consent). Different age thresholds were also suggested too.

The  Jury  covered  concerns  around  risk  appetite  and  a  whole  range  of  different vulnerability considerations for people under 18 including physical and psychological development and concerns around safeguarding. Jury members raised concerns about how challenging this question is to consider whether assisted dying should be possible for children or not.

The  groups  also  connected  this  question  with  who  should  be  allowed  to  decide discussing the role of medical professionals, parental decision-making and the voice of the child here too.

Additional detailed points from the discussion are captured in Appendix E. Additional comments Jury members added to the second vote form are in Appendix F.

Mode

Jury members were asked: "What mode of assisted dying should be permitted in Jersey?" The majority of Jury members supported both Physician Assisted Suicide (PAS) and euthanasia as the mode of assisted dying that should be permitted.

Figure 6: What mode of assisted dying should be permitted?

The Jury discussed the different modes of assisted dying in depth before voting.

Allowing choice, autonomy and a person to be in control, connected with the other number of hurdles an individual may need to go through to be eligible for an assisted death, came up in the Jury members' discussions.

These discussions also linked to the question of who should administer or assist in an assisted death including whether someone should be medically qualified or not. This was also linked to implications and safeguards for medical staff too and whether medical staff would want to be part of the process or not.

The Jury discussed questions around what is involved in the different modes of assisted death and the possible advantages and disadvantages of each. This included the impact of timings of when the prescription is given and taken; safeguards required and the efficacy of the different modes and examples from other jurisdictions.

Jury members talked through the implications of a patient having to administer a prescription themselves and questions around consent were also considered too.

The groups also explored the implications of both modes being permitted looking at this providing different options for people and which mode might be preferable. Jury members again discussed the question of the role and involvement of family members in the process too.

Additional points from the group discussions are captured in Appendix E. Additional comments Jury members added to the second vote form are in Appendix F.

Regulations & Safeguards

Jury members were asked four questions related to assisted dying regulations and safeguards:

• Court or tribunal involvement

• Assisting/administering assisted dying

• Cooling off period

• Advanced decision-making

Court or tribunal involvement

Jury members were asked: "Should a court or specialist tribunal be involved in the decision process before an assisted death?"

The majority of the Jury voted for yes, there should be a court or specialist tribunal involved in the decision process before an assisted death.

Figure 7: Should a court or specialist tribunal be involved in the decision process before an assisted death?

The group discussions before Jury members voted on these questions covered the implications for medical professionals who would need to be involved in this process.

This included regulation on the profession; whether medical professionals would want to do this or not and whether someone's GP may know an individual well or not.

Jury members talked about the number of people involved in the decision-making process and who those people should be including suggestions of a judge, charities, medical and non-government professionals being on tribunals. The Jury also covered whether the implications of the personal beliefs of those on the panel could affect decision making too.

The groups discussed the type of legal review needed and whether a legal layer of sign off  was  an  advantage  (a  safeguard)  or  disadvantage  (expensive  and  possibly bureaucratic).

Jury members also talked about whether there should be ongoing review and if every case should be scrutinised.

Additional points from the group discussions are captured in Appendix E. Additional comments Jury members added to the second vote form are in Appendix F.

Assisting/administering assisted dying

The next question on assisted dying regulation and safeguards Jury members answered was: "Who can assist/administer assisted dying?"

The majority of Jury members voted in favour of doctors and nurses being those who assist/administer assisted dying.

Figure 8: Who can assist/administer assisted dying?

Jury members discussed the role of medical professionals in particular and mental health professionals in this process. They explored areas such as the level of qualification required and whether an existing relationship with the patient is needed or not.

The Jury again looked at the role and involvement of an individual's family when discussing this circumstance too.

Groups talked through different suggestions such as whether the person administering should be pre-approved by a panel, whether there should be approved locations for people to go for the lethal dose to be administered properly and how the process would be monitored overall.

Discussions held by the Jury also covered safeguarding requirements and what law change may be required for suggested individuals to carry out the administering of the assisted death.

The Jury talked about who could be present at someone's assisted death free from fear of prosecution.

Additional points from the group discussions are captured in Appendix E. Additional comments Jury members added to the second vote form are in Appendix F.

Cooling off period

Jury members were asked: "Should there be a requirement for a cooling off period if assisted dying were permitted in Jersey?"

The Jury voted in favour of a cooling off period. There was also quite strong support for this being dependent on the circumstances of the individual too.

Figure 9: Should there be a requirement for a cooling off period?

The groups looked at the different types and lengths of cooling off period and what implications these might have. These considerations were linked to the context of

different situations people may face for example where death is imminent or someone is in constant pain.

Jury members talked about the possible empowerment and control this circumstance could provide including the option for an individual to change their mind without feeling forced within a timeframe. Linked to this, Jury members talked about whether coercion and possible abuse could still be an issue.

The Jury also discussed the way that any cooling off period was recorded and what a second request process would involve.

Additional points from the group discussions are captured in Appendix E. Additional comments Jury members added to the second vote form are in Appendix F.

Advanced decision-making

Jury  members  were  asked:  "Should  assisted  dying  be  possible  with  an  advance decision after losing capacity?"

An advance decision in the context of assisted dying is a statement, made by a person with capacity, in which they make an advance request for assisted dying to apply in a future situation in which they will lack decision-making capacity.

The Jury voted in favour of assisted dying being possible with an advance decision after losing capacity but under certain circumstances.

Figure 10: Should assisted dying be possible with an advance decision after losing capacity?

The Jury discussed a range of factors around this area. They explored the question of who can make decisions and the role of other people in the decision for an individual's death. The groups looked at risks around coercion and safeguarding in this process. The question of autonomy and the ability for an individual to make a decision were discussed too.

Jury members talked about how death is experienced by different people depending on their condition or situation. The Jury explored different considerations around whether an advance decision should be allowed for someone with dementia specifically and referred to the experiences in other jurisdictions they had heard through the Jury process. Linked to this, the question and challenges around defining mental capacity came up again too.

Jury members also looked at emotional wellbeing as a factor to consider in this process and explored what might happen if someone changes their mind at different times.

The Jury discussed whether this should be possible under specific circumstances too including for someone who has complications after a procedure with known high risks. Additional points from the group discussions are captured in Appendix E. Additional comments Jury members added to the second vote form are in Appendix F.

4. Final vote results: Should assisted dying be permitted in jersey based on these circumstances

Jury members undertook a final vote which asked, "Based on the agreed circumstances from the second vote, should assisted dying should be permitted in Jersey?"

A clear majority voted in favour of assisted dying being permitting in Jersey based on the agreed circumstances.

Figure 12: Based on the above circumstances, should assisted dying be permitted in Jersey?

Please see Appendix G for the Jury members' additional comments on the final voting form.

5. Opposing views – summary statements from Jury members opposing the outcome of the Jury

Involve explained during the Jury sessions that there would be space in the final report for summary statements from any Jury members who voted in opposition to the overall outcome of the Jury, should a Jury member wish to submit a statement. This is referred to in several Jury member comments in this report.

One Jury member informed Involve they would like to do this following the process. Sadly, due to a recent bereavement, they are not in a position to do this at the time of writing the report. The Jury member asked for a note to be included in this report that they will submit a separate statement to the States Assembly outlining their views in September 2021.

4. Key messages from the jury for the States Assembly

As part of the second vote process, Jury members were asked if they had final or key messages to send to the States Assembly. Those messages have been loosely grouped into the themes below.

Some of the Jury members discussed this question in their groups during the final session of the Jury. Notes from these discussions are in Appendix H.

1. Dying with dignity

• It is about compassion and letting people die with dignity.

• Hinduism says death is inevitable and is a way to attain nirvana or moksha (the ultimate freedom). We as conscious educated citizens of Jersey should at least let citizens have the choice of a dignified death. Let the soul pass without torment and in peace. Let everybody rest in peace, should the time come.

• People should be allowed to die with dignity. I hope you take all of the Jury's points into consideration.

• I volunteered myself into this Jury with no fixed idea of how I would vote in the end. I had an idea of wanting to be pro-choice however I could never have fully imagined the journey that we've been on. This topic is far bigger than a 10-session citizen jury, and I think as an island we need to talk about death, reviewing our palliative care, access to health services as well as hospice care and listen to people that have experienced them both, but also would have considered assisted dying. I believe all life is precious, and I believe we must aspire to offer world class personalised health services. For some this will not be enough. As technology advances, we can artificially extend life, but that in some cases is not life. Some people will experience pain, suffering, and have no prospect of life. They may be sedated to reduce pain, but again is being under sedation living? For those who wish to take this course of pain relief and sedation to remain alive, they should continue to be fully supported to do so. But for those who want their pain and suffering to end, they should be given the option for their suffering to end, with them remaining in control of their destiny and as has been said throughout this process, afforded the option of dying with dignity. For Assisted dying to function, we need to protect the vulnerable in our society, those who would be at risk of abuse of such arrangements as assisted dying, so if we are to offer assisted dying we need a robust, secure and

compassionate process that is multidisciplinary in nature with safeguarding being the key focus. If we're not confident in the process and the safeguards, the assisted dying debate needs to continue.

2. Personal choice

• Person's choice.

• I believe assisted dying is a personal choice I cannot believe it is to let people suffer when they cannot cope anymore. Choice is the word!

• I would ask The States Assembly to support our recommendation to introduce assisted dying to Jersey. I believe there is a majority support from Islanders for such a legislation and while those who may be opposed may never choose to take advantage of the option, for those select few who may unfortunately become eligible in the future, the comfort of knowing such an option would be available to them, could make their final weeks or months so much easier. With adequate criteria and safeguards in place, combined with a robust reporting and scrutiny framework post event, there is no reason to believe the option would be abused. Having volunteered as a jury member, fortunate enough to have not needed to give the subject matter much consideration before, hearing the evidence and testimonials has led to my now strong support. While a minority of the population may remain opposed, personal beliefs, religious or otherwise, should not be imposed on others, nor impact on their personal choices. A decision to oppose this legislation would be to oppose progress and inclusion. This is a pro-choice decision. Thank you.

• There is no compulsion for assisted dying it is the patient's CHOICE.

• Please put aside your personal views. This is to give people a choice.

• The patient is the one that should be given the right to a choice where there are no others left. We should not be the ones to decide what choice they have, only how to best make sure they live in the best way possible whilst making it absolutely clear that their life is precious, and we wish to offer the best care possible.

• Palliative care needs improved levels of funding with assisted dying as a choice following a documented discussion within the range of options available for individuals. In the past 5 years I have lost 3 members of my close family where the last 2-3 weeks have been very painful with no ability to increase the method of pain relief. People would like the ability to decide if and when to choose to end their life with dignity and pain free.

• Death is a part of life. We are all born, we make our way down life's many paths and we die. Some will live blessed lives and pass away gently in our sleep. But some will contract awful painful diseases that despite our brilliant physician's skill will result in lingering painful death. This doesn't have to be the case if terminally ill patients are given the right to an assisted death on their terms and at the time of their choosing.

• I feel that allowing assisted dying in Jersey in not just a humane route but one that allows people the peace of mind in the last stages of their life whether they chose to use it or not. Situations where people feel they have to travel overseas to have the death they want seems cruel when they could be at home with their families at such a difficult time. We live our lives as we choose, and we should have the right to end our lives as we choose.

• Everyone should have the option of choosing to avoid distressing potentially painful death.

• Please give the people of Jersey the choice.

• We have reviewed many cases, testimonials, data, views, and difference of opinions. Ultimately, we always come to the starting point, is all about choice. We need to give our citizens control over their death (within parameters), the time and place. Assisted dying should form part of the current medical practice in conjunction with palliative care.

3. Views against assisted dying

• This space for my statement about my reasons for voting against assisted dying is not really big enough. If anyone is interested in my reasons for voting against assisted dying, I have written a document which I would gladly share.[23]

• I have chosen to disagree on these circumstances as I feel that palliative care within Jersey should take paramount and become stronger therefore providing residents with more support. Alongside supporting both nurses and doctors - we as individuals have to take into account that our health professionals take an oath to support the living and although sadly some people wish to leave on their own terms due to circumstances it's unfair to put this on our incredible health professionals. In addition, Jersey law needs to change to support those who still wish to travel to Dignitas and their families without prejudice and repercussions upon their arrival home. I feel a relationship needs to be developed with ourselves and potentially Dignitas: other places that offer this to those who wish it and provide islanders with support and wellbeing on their return. I feel ultimately Jersey does not need adopt this legislation and implement it - due to extensive complex variables - including conflict of legislation/ money/ space/ religion/ etc. - but Jersey does need to facilitate Islanders towards this decision and support them through every aspect during a difficult time such as what an individual may face. Jersey is a place where many come to retire and die with dignity. We as an island do not need to do this directly, we just need to do what we do best. Facilitate and support Islanders.

• Do not pass this law when there is ample evidence why not which I will be forwarding in my statement. This Jury was not a satisfactory debate in my opinion which I will also be making my reasons for this known once why not to and Jersey doesn't even need it. I will be putting my full statement forward as to why not.[24]

4. Protecting vulnerable people

• Protect the vulnerable.

5. Listen to the Jury

• To review EVERY aspect of our case, put aside your religious and other beliefs and "listen" to what we are saying, you have chosen US, the Jury, to undertake

the in-depth research and emotional journey as an INDEPENDANT panel. I hope you make the correct decision. Thank you.

• Over the last few months, myself and 25 other jury members have listed to evidence from both sides of the debate on assisted dying.50 It has been an interesting and sometimes very emotional journey which all points from both sides have been taken into account. I ask that you listen to the findings of the Jury and not take any personal feelings such as your faith into your final decision. I respect everybody's faith but if this does sway your decision then you should state this during the debate. Please remember that not everybody follows a religion. I really hope you listen, especially to the late Alain Du Chemin, it's people like him who would have relied to you to follow the Jury. If you do pass this, I would feel that in memory of Alain the law should be called Alain's law. Many thanks.

5. Members' experience of the jury

1. Reflections on the Jury process

Jury members were asked to reflect on their experience of being part of the Jury. They did so at the start of the final block of Jury sessions. Below is a summary of key points Jury members shared about their experience and what they learnt.

General vote

• Hope that any group on the opposite side of a vote is not alienated

• I was worried about the summary - looks like those who don't agree with the majority won't necessarily get their opinion recognised in the final session.

• Important to remember that the Jury is only 23 people, and just because the vote goes one way or another, the vote isn't final

Personal stories

• Dreadful to hear about Alain [du Chemin, Jersey resident who campaigned for assisted dying to be permitted in Jersey].

• Sad news of Alain, good family was with him, but not way he wanted.

Looking forward

• Look forward to decision.

• Interesting to see where it goes.

Complexity

• A lot more complicated than first thought. Not as simple as I thought.

• How big a question it is - particularly in what circumstances.

• Not as straightforward or black and white as initially thought.

• Made me think a bit more....a lot of things we didn't think of...how complex dying is...different views and ideals massive learning curve.

• Assisted dying is [a] complicated question, like life really...focusing on death is an issue.

50 Correction for this report: there were 23 jury members in total.

Quality of information

• Now in a better position to take an informed position.

• Team done well.

• A decision is only as good as the information it is based on.

• Overload at times.

• So much information digesting it all.

• For every problem there is a solution.

Questions/concerns on legislative process

• Some upset and/or surprised by what govt said– [Head of Policy, Government of Jersey said] ...state member could put forward another proposition before the Health Minister...quite surprised.

• For Health Minster to have the last say...don't agree...it would be quite biased on the view of one person....given his personal circumstances.....

• [Head of Policy, Government of Jersey] said our thoughts would go to John LF what qualifications does he have to consider this first? I heard it was the Health Minister. [In the pre-recorded video Head of Policy noted: "Involve will write up [the Jury's] initial recommendationsonce those initial recommendations have been written up by Involve, they will be sent to the Health Minister."][25]

• Clarification on doctors & nurses registration has helped a lot.

Value of group work

• Very important to be exposed to those views whether agree or not...become more accepting of other views.

• We need everybody's input. Serious stuff....talking about people in a vulnerable position...about death...how do we approach death?

• The jury is from different walks of life so any decision made would be a well- rounded decision

Jury process & impact

• Will we be accused of doing things the Jersey way again? It's not best practice

• The wider public have been more engaged - this is a good forum for maintaining some kind of voice.

• Idea - Jury members to speak the decision. To have more impact.

Accessibility of assisted dying

• Accessibility and the cost - will it be accessible for everyone who is living in Jersey - is it just for citizens of Jersey or for people like me I live in Jersey, but I'm not a citizen so what will it cost?

• Taxpayers and resident should be allowed to access this as well - this needs to be thought about - we could become a tourist destination for assisted dying.

• Maintain a safe but relatively accessible process.

Dilemmas

• How would we deal with underage people?

• Other connected issues we are not supposed to think about, but they have an impact on this, but some of these issues are really, really important e.g. mental health, palliative care.

• Mental capacity - advanced/living will - if you lose capacity at the end do you lose the choice and what can be done about this - represent previous wishes.. it's complex.

• The safeguards are important - probably not going to change my mind - worried the safeguards are too much it's not possible for anyone - there is a risk we tie ourselves in knots and don't get anywhere.

General

• Religious leaders - tunnel vision, passionate about their subject.

• Different approaches in different jurisdictions.

• Some are against because of the potential for abuse.

• Other presenters emotionally moved by Alain - were they swayed?

• Enjoyed learning and the case studies.

• definitely been more intenselast two sessions more than others

• Met powerful and inspiring people.

• Privileged to be part of this. Glad to be chosen.

• Seeing this through telescope of death and not life.....disagree with that approach.

• Covid has brought this topic to life.

• Benefits of process despite the outcome.

• This could be the start of a conversation about dying either way.

2. Final Evaluation of the Jury

The delivery team asked Jury members for feedback at the end of each block of Jury sessions, allowing for real time' improvements to be made. Jury members also completed a final evaluation of the whole process after the final Jury sessions. This section outlines a summary of Jury members' feedback.

The following feedback is based on responses from 18 out of 23 Jury members.

Jury members were also asked to rate a series of questions from 1 to 5, with 1 being the lowest and 5 being the highest.

6. Conclusion

The Jersey Assisted Dying Citizens' Jury met over 10 sessions from March – May 2021. 23 Jury members, recruited through sortition, came together to address the question of: "Should assisted dying be permitted in Jersey, and if so, under what circumstances?"

The Jury members spent almost 25 hours listening and questioning evidence on the topic and deliberating to come to their final position on the question.

In the final vote on the Jury question, 78% of Jury members concluded that assisted dying should be permitted in Jersey under the following circumstances:

• where a Jersey resident, aged 18 or over, has a terminal illness or is experiencing unbearable suffering and wishes to end their life.

• subject to stringent safeguards including a pre-approval process; a mandatory period of reflection and consideration; with the direct assistance from doctors or nurses only, as opposed to non-medically qualified staff.

This  report  explains  the  process the  Jury  members  went  through  to  get  to those recommendations. It includes the notes from the group discussions Jury members had illustrating the depth and level of detail the Jury went into.

The Council of Ministers has committed to lodge a report and proposition asking the States Assembly if they agree, in principle, with the Jury that assisted dying should be permitted in Jersey subject to appropriate safeguards. This report will inform that Council of Ministers' report and proposition.

We will conclude by reiterating the overwhelming message from Jury members of the importance of discussing complex, emotive and challenging topics such as this.

7. Appendix

Appendix A - How we will work together

Appendix B - Outline of the Jury evidence & speakers[26]