Isle of Man Medical Society Submission to the Clauses Committee of the Assisted Dying Bill 2023 was approved by the  Executive Committee on January the 4'th, 2024

Isle of Man Medical Society Submission to the

Clauses Committee of the Assisted Dying Bill 2023

4th January 2024

This submission is informed by the survey of IOM doctor’s views 2023 and unanimously endorsed by the Isle of Man Medical Society (IOMMS) Executive.

The IOMMS is the recognised representative and negotiating body for doctors on the Isle of Man and incorporates the Isle of Man branch of the BMA. As Isle of Man doctors are the very people that this bill proposes would be crucially involved in the process of assisted dying and euthanasia we anticipate that this submission is taken very seriously.

Submission

Part 1 - Survey Results and comments 

Isle of Man Doctors overwhelmingly reject the proposed Assisted Dying Legislation. 

This position was endorsed by a unanimous vote of the IOMMS Executive Committee on 20/11/23 at Keyll Darree

A survey of doctors carried out by the IOMMS between 11th August 2023 and 8th Sept 2023 regarding issues involved in the legalisation of Assisted Dying received a 61% response rate.

Overall, 74% of responders are against assisted dying/euthanasia being legalised on the Isle of Man.

On the basis of this survey the medical society is strongly opposed to the legalisation of assisted dying and euthanasia as outlined in the bill.

Effect on Recruitment and Retention of doctors

54% of responders feel this legislation would have a negative effect on recruitment as well as retention with 34% indicating they would consider leaving the Island to work elsewhere if this legislation was passed

This is a huge concern for the health service on the island that is already struggling to recruit doctors and other healthcare staff. There are vacancies in both primary and secondary care that are not being filled and if one third of doctors left the island the health service would collapse. Furthermore if assisted dying was legalised here and not in the UK it would become much more difficult to recruit, particularly in those specialities where the vast majority of doctors oppose assisted dying and euthanasia - General Practice, Geriatrics, Palliative Care and Oncology.

The views of Manx doctors accord with opposition to assisted dying from the World Medical Association and the Royal College of General Practitioners among many others. The Royal College of Physicians stance is that 'it does not support a change in the law to permit assisted dying’. In fact not one single UK medical body supports a change in the law to allow assisted dying. 

Interestingly in November this year the American Medical Association voted again on their position on euthanasia and the vote upheld their stance against it, this despite (or perhaps because) of the fact that many have experience of it as it is legal in some states. Their policy states:

 Euthanasia is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.

Euthanasia could readily be extended to incompetent patients and other vulnerable populations. The involvement of physicians in euthanasia heightens the significance of its ethical prohibition.

The IOMMS concur with these statements.

Effect on the Health Service of the residency requirement

If the Isle of Man go ahead with this while it is illegal in the UK there will inevitably be some form of death tourism that will have a potentially devastating effect on the health service. With a residency requirement of 1 year or even up to 5 years we reasonably foresee an attraction for some people to move to the Isle of Man with an incurable disease seeking the option to end their life at some point in the future. The consequence of this would be that the Isle of Man would become responsible for all their treatment leading up to and including death. Cancer treatment is uniquely expensive with the regular addition of new and expensive medication or treatment options and the travel and accommodation costs driven by much treatment being delivered off island. This will add financial burden to an already overstretched healthcare budget. The implications to Manx Care go further as terminally ill people inevitably require a lot of input from GP services, social services, hospital and hospice care. This will reduce further the availability of these services to current Isle of Man residents.

It is unclear how residency status is to be determined and what role doctors would play in confirming this. This is definitely not a doctor’s role.

Effect on people with vulnerabilities

Only 2.80% of doctors think that assisted dying/euthanasia would have a positive psychological impact on people with vulnerabilities (physical illness and disability, poverty, learning difficulties and mental illness). 

Doctors are worried that those people whose welfare most needs protecting by those in authority are most likely to be harmed by this legislation.

As Professor in Palliative medicine Dr Katherine Sleeman says , “Arguments for assisted dying are easy: “Dying can be bad; I want a choice”. Arguments against assisted dying are harder. Not because they are less strong, but because they are more complex. They require us to look beyond ourselves to wider society.” The point is you can argue about individual cases but ethically and in law we should be looking for the greatest good for the greater number. Evidence from other jurisdictions that have introduced assisted suicide show that there is an overall negative effect on wider society. 

Introducing a choice for the few who think they may want to end their life inevitably forces everyone else facing the last few months or years of life to choose between ending their life prematurely, or continuing to accept care and support. In Washington and Oregon, of patients who died in 2021 under the Death with Dignity Acts, 56% and 53% respectively said that they were concerned that they would be a burden on family, friends/caregivers if they continued to live. This is not autonomy, this is pressure, real or imagined, and we cannot protect vulnerable people from this. 

Worldwide the challenge with any assisted dying legislation is its ability to protect the vulnerable from coercion or pressure. This is particularly acute in a jurisdiction the size of the Isle of Man where inevitably resources are lesser than larger countries. Worldwide evidence also points to the inability of even larger countries having a process with adequate safeguards.

 Recent evidence shows that, in every jurisdiction that has legalised assisted dying and euthanasia, there has been a steady and dramatic increase of deaths by this means and a gradual relaxation of the laws and safeguards. In Oregon assisted dying has been extended to include those with anorexia, arthritis, diabetes, and hernia; and cooling off periods have been reduced or ignored without penalty. In Belgium and Holland euthanasia has been extended to children and disabled babies. Canada has allowed it for people with social problems or disability, and will soon extend it to include patients with mental illness. In Quebec alone between 2016 and 2021 euthanasia grew to account for about 6.1% of all deaths. This all happened despite reassurances of safeguards. The slippery slope is not a fallacy, it is simply a fact.

Doctors and nurses are not in a position to establish coercion, even when they suspect it. Coercive control is very difficult to identify though it is known to occur. It is the legal system that is best placed to establish motives when people's lives are at stake, but even it will make mistakes. Manipulation by family, friends or health staff is a huge concern, but also influences from social media, which is already a problem for suicide prevention, would be impossible to control.

Even now it can be very hard to identify and stop serial killers within healthcare (eg Lucy Letby, Harold Shipman, and Beverly Allett). Under this new law such a person could hide in plain sight on the Isle of Man. 

Depression in those with a terminal illness is common and not always diagnosed. The Mackay Committee House of Lords report noted that “within the population of cancer patients this is thought to be in the region of 25-40% at the time of diagnosis, and similar at other times in the cancer journey—e.g. on confirmation of metastatic disease. Measurement of these difficulties is problematic, particularly at the end of life, because many of the symptoms of depression are confounded by the symptoms of disease.” Therefore if this bill is passed it is very probable that people with depression alongside a terminal illness will be euthanised rather than given the treatment they need for their depression.

Impossibility of Accurately Predicting Life Expectancy - a critical element of the Bill

Only 10% of doctors thought it would be straightforward to decide who had a life expectancy of 6 months (a fundamental aspect of the Draft Bill)

Studies have shown that predicting how long someone has to live is notoriously unreliable. A systematic review covering 42 different studies researching prognostic accuracy in palliative care confirmed that there is wide variation in accuracy (range 23% to 78%) and the majority were less than 50% accurate. 

The Mackay Committee House of Lords report states “we were told by the Royal College of General Practitioners that it is possible to make reasonably accurate prognoses of death within minutes, hours or a few days. When this stretches to months, then the scope for error can extend into years. Professor John Saunders, speaking for the Royal College of Physicians, said that,“prognosticating may be better when somebody is within the last two or three weeks of their life. I have to say that, when they are six or eight months away from it, it is actually pretty desperately hopeless as an accurate factor.” “

As this evidence shows that predicting whether someone has 6 months to live is not accurate then this bill cannot be implemented safely.

In his summing up speech at the second reading Dr Allinson said about concerns fellow MHKs had raised about predicting life expectancy “The point has been made about the word ‘expected’, but that is already in some of our legislation, particularly in terms of social security and the special rules for getting benefits fasttracked in terms of terminal illness. So it is accepted in our legislation already and is something that the medical profession is used to looking at when they are trying to sign some of the official forms that we have.” We assume he is talking about DS1500 forms that a doctor can fill in for someone who is terminally ill in order for them to have faster, easier access to certain benefits. The doctor confirms on the form that ‘it would not be a surprise if their patient were to die within 12 months’. We believe that to compare this situation with prognosticating for assisted suicide or euthanasia is at best misleading. Many doctors who complete DS1500 forms will have had the experience of being contacted by the benefits department asking if their patient who they filled in a DS1500 form 2,3 or more years ago still qualifies for it. The worst thing that can happen when they are wrong in this scenario is that a patient has had quicker access to benefits for longer and so doctors are prepared to offer their best estimate. This in no way compares to the fatal consequences of being wrong by 2,3, or more years in the case of assisted dying.

On the basis of this 2023 survey of doctor's views on the Isle of Man the IOM Medical Society remains strongly opposed to the legalisation of Assisted Dying.

This is the link to the survey results  https://www.surveymonkey.com/stories/SM-K9jJ19b1_2FayfUhAmxOERxg_3D_3D/    which have the results in detail and written comments 

Part 2  - Specific comments on clauses

Clause 1

The title of the Bill should be the Medically Assisted Suicide and Voluntary Euthanasia Bill

The term assisted dying is ambiguous but is more widely accepted to mean prescribing drugs to a terminally ill person for that person to then take themselves in order to end their own life. This bill goes beyond that. It is surely better to be honest in the title of the bill rather than potentially give the impression of trying to mislead.

This bill includes euthanasia which is outside the original “leave to introduce” permission. 

This draft Bill suggests both medically assisted suicide [the patient takes the final act of ingestion themselves] and euthanasia [the physician injects lethal drugs]. 

Clause 2 – Commencement

Safeguards in this Bill attempt to describe a way to protect vulnerable people and doctors. However evidence from other jurisdictions around the world tell us that this is impossible and people will die unnecessarily. If you do proceed with this bill then any safeguards should have the highest level of legal protection available so they cannot subsequently be relaxed and a slippery slope develop - for instance requiring primary legislation for any modification. Some pro-euthanasia lobby groups are already demanding widening of eligibility criteria.

Clause 4 – Assisted Dying

4.2.a  There is no clarification as to how capacity will be assessed or by whom. Neither of the two doctors are required to have specific training in the assessment of mental capacity.

Capacity is notoriously difficult to assess and frequently assessed poorly. On the Isle of Man capacity legislation has only recently been introduced and doctors here have had no experience of using it. 

A full seven years after the Mental Capacity Act was put in place in the UK in 2014 a review by the House of Lords found it was severely failing (https://www.parliament.uk/business/lords/media-centre/house-oflords-media-notices/2014/march-2014/mental-capacity-act/)

It reports:

Vulnerable adults were being failed by the Act designed to protect and empower them. Social workers, healthcare professionals and others involved in the care of vulnerable adults were not aware of the Mental Capacity Act, and were failing to implement it. 

Recommendations; made by the committee included advice that

Government provide the staff resources at the Court of Protection to speed up handling of non-controversial cases;

Government reconsider the provision of non-means tested legal aid to those who lack capacity, especially in cases of deprivation of liberty; (they did not comment on deprivation of life)

Local Authorities use their discretionary powers to appoint Independent Mental Capacity Advocates more widely than was currently the case

Government address the poor levels of awareness and understanding of Lasting Powers of Attorney and advance decisions to refuse treatment among professionals in the health and social care sectors; Government review the criminal law provision for ill-treatment or neglect of a person lacking capacity to ensure that it was fit for purpose.

And recommend that an independent body was given responsibility for oversight of the Act in order to drive forward vital changes in practice and legislation that is in keeping with the language and ethos of the Mental Capacity Act as a whole.

It strikes us that the IOM is going to struggle to implement its own Mental Capacity Act, which doesn't appear to include the above recommendations. The Act will need to be thoroughly embedded in practice before consideration can be given to the reliable assessment of capacity in regard to assisted suicide, without which we worry that the Department and all professionals involved may face legal jeopardy.

Assessment of mental capacity in the IOM will be based on 'a balance of probabilities', rather than the stronger 'beyond reasonable doubt' (Clause 4(3) Mental Capacity Act) and can only be temporary. As regards to assisted dying legislation and given the ultimate aim of the law, to end life, it is challenging to require only this level of assurance with regard to decision making with the outcome being irreversible and resulting in premature death. 

4.2.b.  Time frame related to the clear and settled intention to end life is not specified, nor how this ‘clear and settled intention’ is to be ascertained. 

4.2.d.2. – as previously discussed death tourism is a real risk if IOM legalises before UK jurisdictions with the risk of overwhelming the Health and Social Care Service, with people moving to the IOM in anticipation of accessing assisted dying, but in the meantime needing to access local health and social care services. 

Clause 5  - Terminal Illness

There are a number of serious concerns with this clause.

Terminal illness is defined as a progressive condition which cannot be reversed by treatment but there are many conditions which can be controlled by treatment but they are not reversed by treatment [eg type one diabetes, Crohn’s disease, severe psoriasis, osteoarthritis. This definition would also encompass the ageing process as frailty inevitably leads to death and in the final stages could lead to a prognosis of less than 6 months. This definition is then both ill-defined and open to interpretation or misinterpretation and also brings in ‘normal’ ageing.  

Determination of a condition being ‘terminal’ is fraught with error. Terminal illness is a vague label put on conditions that seem to be leading to death at some undefinable point in the future.

Prognostication is impossible with any degree of accurately and it is misleading to state that the person is reasonably expected to die within six months. 

The statement that “treatment which only relieves the symptoms” is not to be regarded as treatment which can reverse that condition does not account for comorbidities such as infection, metabolic disturbance or treatment side effects which, if not diagnosed, can give the appearance that a person is dying.  There is no requirement to ascertain that the primary diagnosis is correct.

Regarding prognosis we also understand the position of the General Medical Council is that any doctor in the UK who gives a prognosis with the intent of the information provided being used as evidence for assisted dying in the Isle of Man would be liable to sanction. This would inevitably lead to the information being given by doctors in the UK who provide medical care for residents of the Isle of Man (such as oncologists and neurologists) putting those doctors at risk of sanction or leading those same doctors to not give any information on prognosis to avoid the risk of sanction, thus impacting negatively on the care of our patients.

Clause 6 - Declaration

6.1.b.  A registered medical practitioner is a doctor who is registered with the General Medical Council and has an up-to-date licence to practise. Under the terms of the bill, this could be a newly qualified doctor with no experience in caring for people at end of life. Since this doctor is required to understand the diagnosis and prognosis, judge capacity and the possibility of coercion, we feel that this doctor should be qualified for at least 10 years and have specialist training in oncology or palliative care. 

There is no requirement that the consultations with the attending doctor and with the independent doctor are open to scrutiny. These consultations should be recorded and able to be reviewed. In standard clinical practice reviews are often undertaken, and confidentiality is observed – to suggest that confidentiality would be breached appears to be a way to allow shortcuts and sign off without rigorous scrutiny. Body cameras are used by the police and often used in emergency departments to evaluate resuscitation attempts. This type of recording is non-intrusive and would allow some quality control over the consultations. After the patient has died the chief witness as to what has happened is dead; reports completely rely on the medical practitioner. This means it would be very difficult, if not impossible, to detect another Dr Shipman or similar person who enjoyed the ‘power’ of administering lethal drugs.

Similarly, the second opinion” independent” medical practitioner is not required to have any up-to-date knowledge of the condition that the patient is deemed to be suffering from, although they are required to have experience in the diagnosis and management of terminal illness and this would be further specified in regulations. That should include a requirement that the doctor also has in depth and up-to-date knowledge of the specific condition of the patient. As a minimum it should require that this person has undertaken a careful diagnostic review of the patient. 

6.6. There is the requirement for the doctors to ascertain whether this person has made that request voluntarily and on an informed basis and without coercion or duress. The difficulty is that very few people who are subject to coercive influences admit that their thinking has been distorted. One in five people over the age of 65 years have been affected by abuse. The majority of abuse is financial abuse, neglect, and emotional abuse. 

6.7,8,9.  The status of the psychiatrist's opinion is only advisory; there is no route for the psychiatrist to report concern that the provision of lethal drugs has proceeded against their advice. They should have the ability to report this to a monitoring commission and should be able to exert a veto. This effectively downgrades the status of psychiatry and runs counter to principles behind suicide prevention policies. In Oregon, calling for the opinion of a psychiatrist has fallen from 25% at the outset to just 1% now. 

The psychiatrist involved should be one experienced in assessing capacity in the elderly, not for example a child psychiatrist. 

6                    (10) - the House of Lords Select Committee heard clear evidence that being informed about care and experiencing good care are completely different. The person in pain finds it difficult to believe they will be out of pain, or the person told about Hospice care often is reluctant to take it up and then is astonished when they realise how much better they feel and how their quality of life can be improved. There is a danger that this specification will simply be paid lip service to as the Bill currently stands. 

Therefore we feel that there should be a stipulation that the patient has been formally referred to IOM palliative Care Services and must have had a consultation with a palliative care professional. 

6.13 – We believe this should be changed to the “Dept” must specify and this must be done before the Third reading. 

Clause 7 - Assistance in dying

To be more accurate and explanatory the term “lethal drugs” should be used rather than “medicine” in this clause. A medicine is defined as ‘a drug or other preparation for the treatment or prevention of disease’ which is clearly not the case here. It is also a huge concern for doctors and pharmacists taking part in this that no drugs are licensed for this purpose or in the doses required.

We find this clause to be very vague throughout.

The process outlined in this clause carries a serious risk of misdirection of dangerous medication.

In subsection (4) we find the one month prognostication very difficult to predict and potentially open to abuse since once the person is dead it will not be possible to know how long their life would have lasted without the application of lethal drugs.

In subsection (5) the implication is that it is the same drug which is either given orally or intravenously but in reality, they would be entirely different drugs and different formulations, and an entirely different prescription would have been needed from the start.  This should be made more explicit. 

From a safeguarding perspective there is a real danger that the drugs are taken by another member of the household. This has been seen in other jurisdictions where in one case after a patient was admitted to hospital and died their spouse returned home and took the drugs already prescribed thereby ending their own life, and in another case the patient shared the drugs with another family member in an attempt to die together.

Clause 8 - Conscientious objection 

As advised by the BMA, this clause needs to be rewritten so that it doesn’t relate to a “Conscientious Objection”. An “Opt in rather than Opt-out” arrangement should be used for every part of the process. There are a whole variety of valid reasons why doctors would not want to be involved in assisted dying/euthanasia under any circumstances and this in no way should impact on their ability to practice medicine on the IOM. 

Opting in to assisted dying/euthanasia should be associated with rigorous training and assessment of competence to carry out the tasks required. There should also be monitoring of individual doctor’s involvement by the body set up to monitor this Act (clause 13)  

Clause 9 - Assisted dying not to be initiated by health care professional

To fully safeguard health care professionals against accusations that they initiated conversations about assisted dying, a chaperone would be required in every consultation. This is clearly impracticable. Therefore to fully safeguard health care professionals this clause should be removed, but to fully safeguard patients this clause should remain in place. 

This is clearly a dilemma and just one reason why it is impossible to make this a safe Bill for all concerned (patients and health care professionals).

Clause 10 - The Bill states that a person who provides any assistance in accordance with this Act shall not be guilty of an offence. 

GMC guidance advises doctors how to respond when a patient seeks information about assistance to die. It reminds them that 'it is a criminal offence for anyone to encourage or assist a person to commit or attempt suicide'. It states that 'Where patients raise the issue of assisting them to end their own life, or ask for information that might encourage or assist them in doing so, respect for a patient’s autonomy cannot justify illegal action.' (https://www.gmc-uk.org/-/media/documents/gmc-guidance---when-a-patient-seeks-advice-or-information-about-assistance-to-die_pdf-61449907.pdf). Therefore even if the GMC excepts doctors working in the IOM from this disciplinary threat and legal threat because of this Bill, doctors in the UK who advise on prognosis for Manx patients with the knowledge that this is to enable them to seek assisted suicide in the IOM will be committing a criminal offence in the UK and liable to prosecution. As many Manx patients need specialist oncology and other specialist support in the UK, we foresee a major issue where doctors in the UK will be even unwilling to treat terminally ill Manx patients, because of the severe legal jeopardy they may face making any prognostic comments as they help patients choose between different treatment options. The GMC has been approached for clarification and this guidance stands for UK doctors.

Clause 11 - Inquests, death certification etc.

The IOMMS feel this should read that the Dept “must” make regulations rather than “may” and these should be done before the Third reading of the Bill in the House of Keys. 

The IOMMS recommends that every assisted death must be reported to the Coroner and be subject to inquest to ensure rigorous overview of the process.

“Falsification of Death Certificates”

The IOMMS has grave concerns about this and has taken legal advice accordingly.  

Part 1 on the death certificate should indicate that this was an assisted death. The underlying disease would be included in part 2. This is the same situation as if someone with terminal cancer died in a road traffic accident. To not mention the road traffic accident on the death certificate would clearly be seen as incorrect. 

Clause 12 – Codes of Practice. The IOMMS feel this should read the Dept “must” make Codes of Practice rather than “may” and these should be done before the Third reading of the Bill in the House of Keys. The codes of practice will be key in determining how safe the bill is. 

Clause 13 – Monitoring. This needs to be more definite and should include statutory reporting of the details of an individual case to allow audit of cases and monitoring of individual health care professionals and their roles in assisted dying. 

It is very important there is adequate data collection, so the codes of practice should include clear documentation at all stages of the assisted dying process including time from ingestion to death, the presence of complications, and the ability for research to be undertaken into how lethal drugs act. 

Other comments on the Bill

a)   There is no appeal mechanism in the event that the patient is refused lethal drugs but wishes to be given them, or in the event that family members or friends are aware of coercive influences or other reasons that the provision of lethal drugs should not happen. If there is no appeal mechanism in place prior to death there are likely to be complaints after death leading to possible prosecution of doctors.

b)   The IOMMS agree with the statement made publicly by the Chief Minister that there is no mandate for this legislation. The extensive public consultation took place over December 2022 and January 2023 and despite being controlled by the proponent of the Bill still showed the majority of the public against assisted dying. The vast majority of doctors on the IOM do not want this legislation to go ahead. 

c)        Overall, there is repeated reference to “regulations” and ‘codes of practice’ being developed at a later date.  Without seeing the content of these, the members of The House of Keys are being asked to sign off the equivalent of a blank cheque. These “regulations” and ‘codes of practice’ should be developed before the Third reading of the Bill in the House of Keys.