Written evidence submitted by Baroness Finlay of Llandaff and Baroness Hollins (ADY0507)

Thank you for inviting us to give oral evidence to your committee inquiry. Following giving oral

evidence, we would like to submit further information as we are concerned that we have evidence from publications that are at variance with some points made by other witnesses. These we outline below.

Citizens’ Jury

In the session after ours there were questions about the ‘Citizens Jury’ in Jersey. We are therefore

forwarding to you the attached letter (Appendix A) that was sent to Jersey politicians by one member of the Citizens Jury 1 and also the wording from an email to me (Appendix B) about the experience of a witness to this jury – both are supplied with the permission of the authors.

Research on Dutch data regarding euthanasia of those with intellectual disabilities and/or autism

Baroness Hollins quoted our research during the Select Committee witness session on 28th March, which is now in press as an open access paper being published by the British Journal of Psychiatry.2

Every year the Dutch government publishes a few anonymised case reports of people who have received Euthanasia or Assisted Suicide (EAS) by a physician. Reporting all EAS cases is a legal

requirement in the Netherlands; after performing EAS a physician must report it to one of the five regional review committees. The case reports are scrutinised by the committee, which publishes a small selection of anonymised case reports in an Annual Report, plus a wider selection online. These are freely available to the public.3

There are 927 such reports publicly available (in Dutch) for the 10-year period from 2012 to 2021 – this is 1.5% of the total number of people receiving EAS. We searched this database for cases of people who had intellectual disabilities (ID), autism spectrum disorders (ASD) or both. We found 39 such case reports (not 38 as stated in our evidence session), which are 4.1% of the total number of case reports on the RTE website. However, this may not represent the actual numbers or percentages of those with ID/ASD who underwent euthanasia as their complex nature may have made them more likely to be featured, or cases may have been missed if the ID/ASD was not noted in the dataset. An example of such a report can be found here.4

The following details are cited from our paper.5 In 24 of the 39 case reports, ID/ASD was either the main factor or a major contributing factor in the decision to ask for (and grant) euthanasia. In 15 cases, the main reason was not described as substantially related to their ASD or ID.

1 Tranter, Karen, ‘Letter Response to Citizens Jury’, 23rd November 2021, (Link)

2Curfs, L; Finlay, I; Hollins, S; Tuffrey-Wijne, I, ‘Euthanasia and Physician-Assisted Suicide in People with

Intellectual Disabilities and/or Autism Spectrum Disorders: an Investigation of 39 Dutch Case Reports (2012- 2021)’, BJPsych Open, (2023 in press)

3 Regional Euthanasia Review Committees’ Homepage [Link]

4 ‘Judgement 2021-26’, Regional Euthanasia Review Committees, 13th April 2021, [Link]

5Curfs, L; Finlay, I; Hollins, S; Tuffrey-Wijne, I, ‘Euthanasia and Physician-Assisted Suicide in People with

Intellectual Disabilities and/or Autism Spectrum Disorders: an Investigation of 39 Dutch Case Reports (2012- 2021)’, BJPsych Open, (2023 in press)

In 8 cases (21%), the only causes of suffering described were factors directly associated with ID or ASD. Typically, these people were unable to live with the characteristics of ASD/ID and could not cope with the world. In 8 cases (21%), ASD or ID made it difficult to cope with non-life-threatening somatic symptoms or physical decline, such as age-related conditions or symptoms (n=5), tinnitus (n=2) or curable cancer (n=1).

In a further 8 cases (21%), ASD/ID was a major contributing factor to the person’s inability to cope with their psychiatric condition; or the main causes of suffering were described as a combination of psychiatric conditions and the characteristics associated with ASD or ID. In one case, chronic fatigue syndrome caused additional somatic suffering.

In 15 cases (38%), the person’s EAS request stemmed from suffering that was not described as substantially related to their ASD or ID, but related to psychiatric conditions (n=6), somatic conditions (n=6; all of these were people with ID) or a combination (n=3).

The RTE states that EAS reports were selected for publication because of their importance in the development of societal norms and standards and to give physicians insight into the RTEs considerations. As such, they serve as guidance for physicians’ decision-making in the future.

Therefore, exploring the reasons for requesting and granting these 39 EAS requests is of considerable importance.

Additional Points of Fact from the Evidence Session:

1.                   Prolonged dying - Oregon: Lord Falconer stated that in Oregon, “the median time to unconsciousness after ingestion medication is 5 minutes, and the median time to death is 30 minutes. Nobody is reported to have regained consciousness after taking the medication”. The Oregon Health Department official reports over 25 years reveal that 9 patients regained

consciousness; none of these were reported as proceeding to a second ingestion of lethal drugs. The median time from ingestion to death is only available on 56% of the 2454 deaths in 25 years; last

year the median time reported had risen to 52 minutes (range 3 minutes – 68 hours). Overall, in 25 years, half of patients with timings recorded took from 30 minutes up to 104 hours to die after

ingestion of lethal drugs.6

2.                   Complications – Oregon: The presence or absence of complications was recorded in 40% of deaths, with 6.5% of patients suffering complications from drug ingestion before death. Prolonged time to death and reawakening are not recorded as complications by Oregon.7

3.                   Washington State, USA: Their 2021 Health Department official report states that 54% died within an hour of ingestion. 16% took longer than 120 minutes (although, no further times are specified). The time between ingestion to death in 14% of cases is undocumented. No record of complications is kept.

4.                   Views of disabled people: Baroness Meacher stated that 86% of disabled people polled want an assisted dying law in the UK.8 This figure is from a 2015 Populus commissioned by Dignity in

6 Oregon Health Authority, ‘Oregon Death with Dignity Act: 2022 Data Summary’, [Link]

7 Ibid

8 Baroness Meacher, extract begins 10:11:24; [Link]

Dying. In contrast, a 2018 poll by the disability charity Scope found that “in the poll of 1005 disabled adults, twice as many disabled people said they would be concerned by a change in the law (64%) as those who would not (36%)”.9

Also, a recent survey of the views of disability rights organisations on assisted dying found that 94% declined to comment, with only 4% declaring they were neutral and 4% opposing10.

5.                   Involvement of doctors: Lord Falconer stated that in Oregon a “significant majority of doctors are willing to participate in the process”.11 In 2022, 146 doctors issued lethal drugs prescriptions for 431 people in Oregon - 78% of these physicians wrote one or two prescriptions; one doctor wrote

51.12 Notably, in 2022 there were 6,522 employed physicians in Oregon.13 Given only 146 physicians issued lethal drugs prescriptions in Oregon that year, it can be shown that a minority of only 2.2% of physicians participated.14

Over the past 20 years, descriptions have repeatedly emerged of moral injury to clinicians associated with ‘assisted dying’ in the Benelux counties, and more recently in Canada 15 and now Australia.16

6.                   Failure of safeguards: A case from Canada illustrates the fallibility of diagnosis when a 71- year-old, told he was terminally ill with end stage COPD, was euthanised within 48 hours of first assessment, but autopsy revealed he did not have COPD.17

In Belgium in 2013, 1.7% of all deaths were a result of a hastened death without an explicit request from the patient18, and in 2016, in almost 25% of cases the proper procedures or precautions were ignored in some way. 19

The Oregon Health Authority has confirmed that ‘terminal illness’ includes conditions which, with treatment, may not be terminal. 20

9 Scope, ‘Scope Concerned by Reported Relaxation of Assisted Suicide Guidance’, 20th January 2018, [Link]

10 Box, Graham; Chambaere, Kenneth, ‘Views of Disability Rights Organisations on Assisted Dying Legislation in England, Wales and Scotland: An Analysis of Position Statements’, BMJ Journalists: Journal of Medical Ethics, Vol. 47(e64), 5th January 2021. [Link]

11 Lord Falconer, extract begins, 10:19:43; [Link]

12 Oregon Health Authority, ‘Oregon Death with Dignity Act: 2022 Data Summary’, [Link]

13 ‘Number of Active Physicians in Oregon in 2022, by Specialty Area’, Statista, 4th July 2022, [Link]

14 Oregon Health Authority, ‘Oregon Death with Dignity Act: 2022 Data Summary’, [Link]

15 Hebert M, Asri M. Paradoxes, nurses’ roles and Medical Assistance in Dying: A grounded theory Nurs Ethics. 2022 Nov-Dec; 29(7-8): 1634–1646. [Link]

16 Kelly B, Handley T, Kissane D, et al. “An indelible mark” The response to participation in euthanasia and physician-assisted suicide among doctors: a review of research findings. Palliative and Supportive Care, 2019: 1–7. [Link]

17 Coelho, Ramona, ‘Medical Assistance in Dying Overused in Canada Even Before Expansion’, The London Free Press, 11th July 2022. [Link]

18 Chambaere, Kenneth; Cohen, Joachim; Deliens, Luc; Mortier, Freddy; Stichele, Robert V., ‘Recent Trends in Euthanasia and Other End-of-Life Practices in Belgium’, The New England Journal of Medicine (372;12), 19th March 2015. [Link]

19 https://www.ieb-eib.org/ancien-site/pdf/20161019-rapport-euthanasie-2014-2015.pdf

20 Stahle, Fabian, ‘Oregon Health Authority Reveals Hidden Problems with the Oregon Assisted Suicide Model’,

Scoop, January 2018. [Link]

7.                   Autonomy: The concept of autonomy is complicated. Autonomy is diminished with respect to your own death: you can choose to die if you don’t want to live, but you cannot choose to live if you are about to die, and at death autonomy is permanently disposed of.21 A person can refuse

treatment but they cannot demand any treatment they wish for. Rather than provide every person who wants to end their lives the means to do so, doctors must deliberate whether the individual patient’s ongoing living should be supported by renewed clinical and social efforts as in suicide

prevention policies, or whether their death should be expedited by providing lethal drugs. Individuals do not exercise autonomy in isolation. Instead, we are relational beings operating in social contexts where the opinions, attitudes and perceptions of others shape the autonomous decisions we make. Pressures on a patient don’t have to be direct or articulated to shape their decision. Instead,

individuals translate the attitudes of those around them into their autonomous decision making. If society does not believe in the value of an individual’s life, how can we be sure that the individual’s personal decision to die is not being shaped by society?

Other points we wish to draw to the attention of the committee:

Widespread underreporting and lack of transparency:

7.                   A review of the laws in The Netherlands and in Belgium in 2012 states:22

“Reporting is mandatory in all the jurisdictions, but this requirement is often ignored 11,12 In Belgium, nearly half of all cases of euthanasia are not reported to the Federal Control and Evaluation Committee 13. Legal requirements were more frequently not met in unreported cases than in reported cases: a written request for euthanasia was more often absent (88% vs. 18%), physicians specialized in palliative care were consulted less often (55% vs. 98%), and the drugs were more often administered by a nurse (41% vs. 0%). Most of the

unreported cases (92%) involved acts of euthanasia, but were not perceived to be

“euthanasia” by the physician. In the Netherlands, at least 20% of cases of euthanasia go unreported 7. That number is probably conservative because it represents only cases that can be traced; the actual number may be as high as 40% 14.

Although reporting rates have increased from pre-legalization in 2001, 20% represents several hundred people annually.”

8.                   A Belgian study estimated the total number of cases of euthanasia in Flanders in 2007 was 1040, of which approximately half (549) were reported to the Federal control and evaluation

committee.23 Where physicians perceived they had shortened life by over one week, reporting rates were higher (93%).

21 Hartling O. Euthanasia and assisted dying: the illusion of autonomy—an essay by Ole Hartling BMJ 2021; 374 :n2135 [Link]

22 Pereira, Jose, ‘Legalizing Euthanasia or Assisted Suicide: The Illusion of Safeguards and Controls’, Current Oncology, Vol. 18(2), April 2011.Section 2.2 [Link]

23 Bilsen, Johan; Cohen, Joachim; Deliens, Luc; Mortier, Freddy; Rurup, Mette; Smets, Tinne, ‘Reporting of Euthanasia in Medical Practice in Flanders, Belgium: Cross-Sectional Analysis of Reported and Unreported Cases’, BMJ, October, 2010. [Link]

9.                   A survey of physicians in the Netherlands in 2005 revealed that only 80% of ‘euthanasia cases’ were reported to the review committees. Euthanasia with non-recommended drugs was almost never reported.24

Adequacy of data collection and evidence of coercion:

10.               Although the Netherlands requires summary case reporting, there is no independent review of the consultations in which the request for euthanasia/assisted suicide was conducted. In other jurisdictions data collection is mostly demographic and not qualitative. It therefore is impossible to state that there is no coercion or pressure behind the request, because there has been no attempt to assess such influences before death. Of the 27 jurisdictional areas that legislated for assisted dying, only 16 regularly produce reports from which data can be gathered, and this is mostly demographic (see table 1).25

Palliative care development when PAS/euthanasia has been legalised

11.               When comparing the world rankings for the quality of palliative care provision between 2015-2021, nations that have implemented ‘assisted dying’ fell in rank, except for Switzerland (listed below). Over this period there have been global initiatives to improve palliative care. This period is also when ‘assisted dying’ deaths increased significantly in countries with legislative change (Graph1).

Change in worldwide rankings of palliative care

Difficult symptoms

12.               It is of concern that much ignorance persists over effective ways to control symptoms in

those with advancing disease and over the use of technological advances to support ongoing active living. In opening remarks in the evidence session on 28/3/23, foul-smelling wounds and severe

24 Buiting, Hilde M.; Heide, Agnes van der; Maas, Paul J van der; Pasman, H. Roeline W; Onwuteaka-Philipsen, Bregje D; Mette L Rurup, ‘The Reporting Rate of Euthanasia and Physician-Assisted Suicide: A Study of Trends’, Medical Care, Vol. 46(12), December 2008. [Link]

25 Worthington, Ana, ‘Comparison of Official Reporting on Assisted Suicide and Euthanasia Across Jurisdictions’, BMJ, 8th December 2022. [Link]

26 The Economist Intelligence Unit, ‘2015 Quality of Death Index: Ranking Palliative Care Across the World’, The Economist, 7th October 2015. [Link]

27 Baid, Drishti; Bhadelia, Afsan; Bhatnagar, Sushma; Connor, Stephen R.; Goh, Cynthia; Singh, Ratna;

Finkelstein, Eric A., ‘Cross-Country Comparison of Expert Assessments of the Quality of Death and Dying 2021’, Journal of Pain and Symptom Management, April 2022, Vol. 63 (4). [Link]

vomiting were graphically described, the management of these and other symptoms have been transformed in recent years.

13.               For some years, metronidazole has used with great efficacy to eliminate smell from lesions and its place in improving quality of life has also been recently reported in a topical spray

formulation.28 Similarly, the management of intestinal obstruction and vomiting have been

transformed by the use of octreotide29 and improved understanding of antiemetics.30 Difficult neuropathic pain management has similarly been greatly improved. 31

Escalation of deaths by euthanasia and physician assisted suicide

14.               Increases in numbers are seen in all jurisdictions over time (Graphs 1 and 2). Where both euthanasia and physician assisted suicide are legalised, the vast proportion of deaths are by

euthanasia and the escalation of numbers is much more rapid, possibly because the process carries a message of medical beneficence. 2022 data is not yet available for Canada. Data from Victoria,

Australia, has only been available for 3 years (from July to June); it currently appears to reflect the rate in deaths per million population seen in Oregon which is rising annually but at a lower rate than those countries that legalised medical euthanasia.

Graph 1 Poor decision-making affecting vulnerable people.

15.               There have been numerous reports of vulnerable people making decisions for themselves

that were not in their own best interests, as was seen during Covid.32 Furthermore, there have been

28 Harano, H ; Matsunuma, R ; Tanaka-Yagi, Y ; et al., Malodour from oral malignant fungating wound: sprayed metronidazole – case report ‘BMJ Supportive & Palliative Care’, Epub, (April 2023 in press) [Link]

29 Mangili G, Franchi M, Mariani A, Zanaboni F, Rabaiotti E, Frigerio L, Bolis PF, Ferrari A. Octreotide in the management of bowel obstruction in terminal ovarian cancer. Gynecol Oncol. 1996 Jun;61(3):345-8. [Link]

30 Scottish Palliative Care guidelines 2022: Nausea and Vomiting [Link]

31 Neuropathic pain: Treatment summaries. Current BNF, NICE [Link]

32 ‘Protect, Respect, Connect, - Decisions About Living and Dying Well during COVID-19’, Care Quality Commission, 15th April 2021, [Link}

cases of their best interests not being met despite their families’ attempts to advocate for them. A Mencap report, Death by Indifference, was written in 2012 and documents 74 such deaths within the NHS. It shows both that disabled patients were not treated with their best interests at heart, and

that the process for making decisions for people who lack capacity (outlined in the Mental Capacity Act) was ignored.33

Additional facts that may be of interest to the committee:

Expansion of legislation:

Expansion of legislation occurs in two ways – through amendments to the original legislation and through increasingly lax interpretation of the legislation itself.

Oregon’s 1994 legislation initially contained a waiting period of 15 days between first and second oral request, before suicide could be assisted in terminally ill patients. In 2020 this was waived if the

person is expected die to in the waiting period.34

In The Netherlands in 2001, euthanasia was legalised for people over 12 years old.35 In 2005 the Groningen Protocol for euthanasia of neonates and infants was declared to be mandatory by the Dutch Society for Paediatrics. In 2018 the Dutch Euthanasia Commission Code included the

possibility of couples requesting ‘double euthanasia'.36 In 2020 the Dutch Supreme Court ruled that doctors can end the life of patients with dementia/ Alzheimer's based on an advanced request.

In Belgium the 2002 legislation for euthanasia of adults was expanded in 2014 to include competent minors. 2020: An amendment removed any time restriction on advance directives for euthanasia.

In Canada part of the 2016 Medical Aid in Dying was declared unconstitutional by the Superior Court of Quebec and in March 2021 the House of Commons legislated to remove the ‘reasonable

foreseeability of natural death’ requirement. A waiver of final consent was introduced if the patient loses decision making capacity. Implementation of the mental illness as a sole reason for providing MAiD has been postponed until March 2024.

in Australia the use of Telehealth services for assisted dying consultations and assessments has caused serious concerns among many health care professionals. A recent open letter written on behalf of the “Health Professionals Say No!”37 network has drawn attention to concerns over such expansion of remote assessments in light of the inadequacies and the dangers of remote (not in person) assessments.38

Baroness Finlay of Llandaff and Baroness Hollins 29.04.2023

33 ‘Death by Indifference: 74 Deaths and Counting’, Mencap, 2012, [Link]

34 Oregon Health Authority, ‘Frequently Asked Questions’, [Link]

35 ‘Dutch Law on Termination of Life on Request and Assisted Suicide (Complete Text)’, World Federation Right to Die Societies, 1st April 2002. [Link]

36 ‘Euthanasia Code 2018: Review Procedures in Practice’, Regional Euthanasia Review Committees, 10 January 2019, p. 30. [Link]

37 Health Professionals Say No! [Link]

38 Maria Cigolini, ‘Open Letter to the Federal, State and Territories Attorneys-General Concerning Proposed

Legislative Changes to Permit Telehealth for Voluntary Assisted Dying (VAD) Practices’, Health Professionals Say No!, April 2023. [Link]

Tables from: Worthington, Ana, ‘Comparison of Official Reporting on Assisted Suicide and Euthanasia Across Jurisdictions’, BMJ, 8th December 2022.

Appendix 1

Letter regarding Citizens Jury in Jersey that was sent to all States Members by the author

23 November 2021

Dear States member

I recently took part in the jury debate on assisted dying and I am writing to express my deep

concerns and reasons to vote against the proposal at this time. In the final report that you will have received, it would have been noted that a juror would be writing to you at a later date, due to family bereavement, and that person is myself.

I have tried to keep my letter short and concise, but this is a subject that requires such in depth discussion I do not believe it could be adequately covered by a jury over ten sessions let alone via zoom.

I fully appreciate that the majority of people would not wish to see any individual go through terrible and unnecessary suffering at the end of their lives and hence why this is such an emotive subject.

There are, however, in my opinion and from what I experienced as a jury member, far more questions than answers at this time, and a significant need for further balanced and intellectual debate on such a subject as euthanasia before any such law is considered.

I commend the time and commitment made by everyone involved in the process, but feel compelled to make mention of a few points of concern in relation to the process:

(i)                  Selection process: I applied to take part in the debate by telephone the day before applications closed and was asked my name, age and view on euthanasia. I was accepted via email very soon after. At such a late stage of applying and only being asked those three questions it makes me question what selection process was undertaken to ensure a balanced debate.

(ii)                 Balance of debate: I feel it is important to mention, despite good intentions, there seemed to be an underlying intent to achieve a predetermined outcome which was supported by some comments made during the sessions, which included – one at

the beginning where, in response to a discussion on the Capacity Law, a juror made a remark along the lines of (but not word for word) – “that means we are already halfway there...”; and one at the end during the final decision where a juror stated: “that was easy we hardly had any opposition…”. I mention this because the subject is particularly emotive and not something that should be rushed or debated with a particular outcome already in mind.

(iii)               Time allowed: I would like to convey to all state’s members that the quality of speeches given by the chosen professionals was not only excellent but was clearly and articulately debated by both sides of the discussion. That said, I feel additional time should have been made for further evidence and presentations given the sensitivity of the matter at hand. It was therefore, in my opinion, regardless of your positions or beliefs, difficult to make an informed decision given the brevity of

discussions and time given to consider such an important issue.

On the subject matter provided and the debates that were undertaken, I would like to stress the following points:

The unmistakable evidence of the natural progression of an assisted dying law, should it be

implemented here in Jersey, is clearly evident in the implementation of the Canadian law (2016):

The mounting evidence of the inadequate safe-guarding measures in countries where it has been implemented and why somehow Jersey would be different. There was limited discussion but,

nevertheless, deeply upsetting debate on the defencelessness that vulnerable individuals could feel should such a law be passed. There was clear evidence that the elderly would and are being taken advantage of where Assisted Dying (“AD”) is in place. In a survey it was not pain relief that was given as the top reason for some form of assisted dying but feeling a burden to society and family.

I have observed an inherent belief in society to place faith that those in a position of power (especially those in the medical profession) have our best interests at heart, when history has on many occasions clearly proved otherwise, whether it be through, at best a lack of knowledge, or worse deciding who lives or dies. Where would the passing of such a law take us in the future? This may all seem impossible, but we have a duty to not only consider the protection and wellbeing of

this present generation but how this law could impact our future generations should this law be passed and where the inevitable decline of such a law would take us.

I think the consideration of the impact of depression is also extremely relevant to this issue.

Depression is now considered a reason for AD in some countries where this law exists. Without going into lengthy discussion on this subject, you might find it informative when considering the matter and deciding your position to read what Professor David Healey has written on the impact of

depression, its associated medication and subsequent impact on decision-making. The duty and responsibility of the medical profession:

I have observed considerable division amongst the medical profession should such a law be passed, as already seen in the UK, as it runs counter to the medical professions core beliefs and duty to

preserve life. I think the majority of doctors do not wish to be a part of AD and should such a law be passed who would carry it out. It won’t be so far into the future that artificial intelligence could play a part in this, a terrifying scenario yet perfectly feasible.

According to one of the medical experts during the debate, no medical professional has ever had any training on how the Capacity and Self-determination Law (2018) (the "Capacity Law") should be

implemented correctly and many medical professionals and others believe it is a flawed law. The consideration around the lack of medical training on how to implement the Capacity Law is perhaps one of the most crucial aspects to consider as any AD law’s foundation would be inextricably linked to the Capacity Law, and one that would surely be of most significance to Jersey residents and those who are terminally ill.

The need and perceived urgency of such a law:

One of the professors who was invited to speak raised the point as to whether such a law was even required at this time. Given there are excellent palliative care options available, and the ‘target group’ appears to be extremely small, it does indeed raise the question what urgent need is there to implement any AD law now. Although I’m sure no one would argue that there is always room for

ongoing improvement in this area – perhaps this is an area more worthy of exploration and funding? In addition, the professor highlighted that, in her experience, once the palliative care options, along with the reality of what AD entailed had been clearly explained to patients they had chosen not to

pursue AD, but instead had chosen palliative care. It is also worth highlighting that the professor

informed the group that, in the last year, only five patients in Jersey requested AD. Out of these five patients, four chose palliative care once it had been explained to them and for the other patient, family members intervened. It must not be underestimated the impact such a law would have on

those family members and friends left behind. The belief that all life matters:

We all as human beings, have a moral duty to care for all people in society, both in sickness and

health, and that we should always seek to offer the best care and protection to those who need our help. I believe that this care is better demonstrated and those who are vulnerable are better cared for when society seeks to uphold the sanctity of life. Every life is precious right up until our last

breath. Some of the greatest achievements have been made by individuals who have been written off by society, and some of the greatest recoveries have come from inexplicable and seemingly

impossible cases. How can we be sure that we are not stopping a life where there is more life to lead.

I make these statements not just for the law that is being proposed today, but any subsequent relaxations or additions.

An individual on the jury responded to my comment that life is precious right up until the end, by saying that this debate was about death not life. But I do not agree – for me, this debate is about ensuring each and every one has the best quality of life as far as possible, the duty to continue to

fund and strive for the best possible palliative care for those who are terminally ill and the belief that every life is precious and every human being worthy of society’s care. Therefore, it is absolutely a

debate about life and not death.

Taking into account the points raised around the process and the discussions highlighted above, I would urge all states members to pause and consider that further debate and thought is warranted, and in fact required, to protect our community and, in particular, those most vulnerable and the very people this law seeks to assist; and would encourage all states members to question the urgency and need to enact such a law at this time.

There is so much more to cover on this emotive subject but for now I would like to thank you for taking the time to read my letter and again I would ask that you vote against this proposal at this time.

Yours faithfully

Appendix B

Email from Baroness Grey-Thompson regarding her experience as a witness

From:

Sent: 10 January 2023 21:49

To:

Subject:

Dear Ilora

Further to our brief chat yesterday about the Citizens Jury (sorry I had to rush to a meeting), I

thought it might be useful to send you some more detail on my experience, which were far from positive.

I did not raise it publicly at the time but spoke to one of the admin team, but they didn’t seem that interested in genuine check and challenge. I was told that all members were going to open to

differing views. This was not the case and it felt a closed process.

Jury members introduced themselves to me but the majority expressed very strong views on wanting to introduce assisted suicide and even euthanasia. It wasn’t clear that they understood the

difference. One of the Jury members was asked to step back from strongly pushing their opinion on to others and it was mentioned that they had been asked this several times before.

In the online session that I joined, the two people who presented in favour of changing the law presented via a pre-recorded video. One of them was professionally shot and incredibly emotive but neither explored any wider issues. This also meant that the Jury could not ask them any

questions or interrogate why they held that opinion.

After I had made my presentation I did a round robin of mini panels for Q&A. I was extremely

disappointed that I was barely asked any questions. I thought that those with an opposing view to mine might actually challenge me. In one of the sessions I almost did a second presentation, asking Jury members what the thought as there was so little engagement with me. Their comments were all quite emotive and from someone who has worked in this space for the last 15 years, there was

little substance. I heard ‘poor boy’ more than once (about one of the other contributors) which leads me to have concerns about the level of ableism in the room and fear for disabled people.

One of the members who described themselves as ‘sitting on the fence’ seemed reluctant to ask any questions in front of other members.

If I was asked about my experience now I would have to say that it was closed with strongly held

views going in to process. There was next to no open discussion or willingness to learn. It didn’t feel that my contribution was valued or even listened to. The most worrying part it felt that it was set up to explicitly recommend a law change without exploring any of the consequences.

Kind regards

May 2023