Assisted Dying - Private Members' Bill

Overview

*The content within this consultation is provided by the Member responsible, Dr Alex Allinson MHK, and is a parliamentary matter for Members of Tynwald*

Modern medicine and science continues to advance effective treatments and cures for a whole range of illnesses. Palliative care has revolutionised the way we approach terminal illnesses and death. And yet there have been consistent calls and campaigns for individuals to be allowed greater autonomy and choice when they approach the time of their inevitable passing.

The debate about choice around how and when an individual can face their own death is very personal and can be emotive. Even discussing it can trigger personal memories of loss and bereavement.

If you do feel affected by the contents of this consultation and would like to discuss your feelings further CRUSE Bereavement Care can give confidential advice and bereavement  support. They can be contacted on 01624 668191.

At the sitting of the House of Keys on 14^th June 2022 Dr Alex Allinson, MHK for Ramsey was given leave to introduce a Private Member’s Bill;

“To enable adults who are terminally ill to be provided at their request with specified assistance to end their own life; and for connected purposes”.

The aim of this public consultation is to explore some of the policies and procedures involved in drafting such a Bill before it can be created and bought back to Tynwald for democratic debate.

Tynwald has discussed the issues around assisted dying several times in the past. In May 2003 John Rimington MHK asked for leave to introduce a Private Members Bill. At the time an amendment was passed to set up a Select Committee of five members to take written and oral evidence and their extensive report was published in 2006;

https://www.tynwald.org.im/business/pp/Reports/2006-PP-0012.pdf

Since then there have been Tynwald petitions, affirmative motions by Junior Tynwald and in February 2015 the Honourable Member for Rushen, Juan Watterson also asked for leave to introduce a bill to amend the law with respect to assisted dying which was not supported at that time.

Around the world similar debates are taking place. At the time of writing, some form of assisted dying is legal in at least 25 jurisdictions with over 200 million people having access to this service. Jurisdictions which have legislated for assisted dying include; all six states in Australia, New Zealand, 10 states in the USA and the District of Columbia, Canada, Belgium and the Netherlands.

In 2021 a Citizen’s Jury reported to the Government of Jersey with recommendations that assisted dying should be permitted for island residents aged 18 or over, who have a terminal illness or are experiencing unbearable suffering and wish to end their own life. There have been several attempts at introducing legislation through the House of Lords and Liam McArthur MSP, Liberal Democrat member for the Orkney Islands is currently progressing a Private Member’s Bill through the Scottish Parliament;

https://www.parliament.scot/bills-and-laws/proposals-for-bills/proposed-assisted-dying-for-terminally-ill-adults-scotland-bill

The public consultation on the Bill’s proposals received a record number of responses with 76% pf respondents fully supportive of the proposals and a further 2% partially supportive.

The language used during debates on this subject are important but often some terms are used which would benefit from clarification;

• Assisted dying—Proponents of Assisted Dying Bill often argue that this term best describes prescribing life ending drugs for terminally ill, mentally competent adults to administer themselves after meeting strict legal safeguards. Assisted dying, as defined like this, is legal and regulated in the US states of California, Colorado, Hawaii, Montana, Oregon, Vermont, Washington, Maine, New Jersey, New Mexico and in Washington, DC. In 2017, similar legislation was passed in Victoria, Australia with the remaining five Australian states following.
• Assisted suicide—This term is often intended to describe giving assistance to die to people with long term progressive conditions and other people who are not dying, in addition to patients with a terminal illness. The drugs are self-administered. Some opponents of assisted dying do not accept that it is different from assisted suicide. Assisted suicide, as defined like this, is permitted in Switzerland.
• Voluntary euthanasia—This term describes a doctor directly administering life ending drugs to a patient who has given consent. Voluntary euthanasia is permitted in Belgium, Luxembourg, and the Netherlands. In 2016, Canada legalised both voluntary euthanasia and assisted dying for people whose death is “reasonably foreseeable,” permitting what it calls “medical assistance in dying.”

There are a number of active organisations campaigning either for or against changes in our current legislation which does not allow for any form of assisted dying. Many have previously given briefings to parliamentarians and community groups.

In May 2021, Island Global Research carried out an opinion survey on views about end of life issues on behalf of Dignity in Dying who advocate for assisted dying;

https://www.islandglobalresearch.com/View?id=2232

They specifically asked about a change in our law to allow mentally competent, terminally ill residents (aged 18 years old and over) the option of seeking assistance in their death. Respondents were also told safeguards embedded in such legislation usually include;

• Two doctors independently assessing whether the person making the request is of sound mind and has capacity
• The person is terminally ill with 6 months or less to live and acting on their own free will
• Doctors independently explore the reasons for the request for assisted dying, review the person’s medical care, consult with other professionals and write the prescription for the life-ending medication
• A reflection period, usually of 14 days
• The dying person would take this medication themselves and be able to change their mind at any point in the process.

On the Isle of Man 65% of respondents strongly support the introduction of such legislation whilst 8% strongly oppose it.

On further questioning 48% of people, when asked, believed it of high importance that a law change was debated during this political term.

Such opinion surveys are useful, but this public consultation seeks to widen the debate to all of those who live on our island and your responses will help shape the draft Bill which will then be bought to Tynwald for discussion.

Aim of the Proposed Bill

The aim of the proposed Bill is to enable mentally competent adults who are terminally ill to be provided with assistance to end their life at their request.

A person is deemed to be terminally ill if a registered medical practitioner has diagnosed them as having a progressive disease, which can reasonably be expected to cause their death.

The person must be 18 years of age or over and is a permanent resident on the Isle of Man.

Safeguards

This consultation is keen to hear views on safeguards that should be considered for inclusion in this Bill proposal.

The following list of safeguards have been suggested and would apply before someone ends their life.

• Two doctors independently confirm the person is terminally ill.

• Two doctors establish that the person has the mental capacity to request an assisted death.

• If either doctor is unsure about the person’s capacity to request an assisted death, the person is referred to a psychiatrist or other appropriate specialist for a further opinion.

• Two doctors assess that the person is making an informed decision without pressure or coercion.

• Two doctors ensure the person has been fully informed of palliative, hospice, and other care options.

• The person signs a written declaration of their request, which is witnessed and signed by both doctors and an independent witness.

• A suggested waiting period of 14 days allows the person time to reflect on their decision. This timeframe could be shortened if the person is expected to die within 30 days.

• The life-ending medication is stored at a pharmacy and is delivered to the person in a secure manner.

• The person must administer the life-ending medication themselves.

Palliative care

Palliative and other End of Life care has greatly improved in recent decades and will continue to do so given the commitments made by Hospice Isle of Man and those working within the sector. However, there have been, are, and will continue to be limits to that care - some people experience severe emotional and physical suffering at the end of life despite receiving excellent palliative care.

There are also some people who, for personal reasons, do not want to access palliative care services or be admitted to Hospice. Although the hospice movement have been traditionally opposed to aspects of assisted dying any introduction of new legislation to allow for this does not have to be at the expense or detriment of established palliative care pathways but should be seen as an additional option and choice.

Many more people fear what they may be forced to endure at the end of their lives and feel denied control over their deaths.

Consequently, some dying people explore ways to hasten their deaths. These can be through travelling overseas for an assisted death, ending their lives behind closed doors, or by voluntarily stopping eating and drinking in an attempt to accelerate the dying process. Where assisted dying has been legalised, it has improved the quality and funding of palliative care.

Assisted dying is associated with greater trust amongst patients and medical professionals. In countries where assisted dying is legal, trust in doctors is high. For example, research has shown that the country where doctors are most trusted is the Netherlands, which has the long accepted assisted dying as a legal procedure. In the UK, 93% of people say an assisted dying law would either increase or have no effect on their trust in doctors.

This increased trust supports patients to make and communicate their decisions.

Changing the law would allow a dying person to have honest, transparent conversations with their care team about their fears and wishes for the end of life and about other available palliative care options. Research demonstrates that assisted dying laws contribute to more open conversations and careful evaluation of end-of-life options, as well as more appropriate palliative care training of doctors and nurses, and greater efforts to increase access to hospice care.

A report commissioned by Palliative Care Australia which examined assisted dying around the world found “no evidence to suggest that palliative care sectors were adversely impacted by the introduction of legislation. If anything, in jurisdictions where assisted dying is available the palliative care sector has further advanced”;

https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2018/12/Experience-internationally-of-the-legalisation-of-assisted-dying-on-the-palliative-care-sector-APEX-FINAL.pdf

Oregon is now considered to have amongst the best palliative care in the USA, and has had an assisted dying law in place for over 20 years.

In the USA, approximately 90% of patients who request an assisted death are receiving hospice or palliative care. This shows that palliative care access does not eliminate requests for assisted dying, nor does a request for assisted dying indicate a failure of palliative care. Rather, it shows that assisted dying is one of several options that can safely be made available to people at the end of life.

 

Protecting vulnerable people

Where assisted dying is legal the evidence shows that such laws are safe and effective.

The safeguards being considered for this draft Bill would act to ensure that vulnerable people are not adversely affected within the boundaries of the present proposals.

In other jurisdictions which allow for assisted dying the people who usually tend to seek an assisted death are between 65 and 85, have a ‘good education’ and have cancer. Studies have found that a request for an assisted death often represents long-held philosophical beliefs among patients who highly value their independence and autonomy.

Potentially vulnerable groups of people such as those of a lower socio-economic status or aged over 85 have not been found to disproportionately use assisted dying laws.

Under this legislative proposal, two doctors would be required to independently assess the person making a request, including enquiring about their reasoning and motivations.

This is an opportunity to make sure all options have been explored and to refer the person for psychiatric assessment if necessary. The person would be empowered to change their mind at any point.

Disability Rights Oregon has said that they have never “received a complaint that a person with disabilities was coerced or being coerced to make use of the Act”.

Healthcare professionals

Implementing a framework for legal reform would ensure the right checks and balances are in place for individuals and their families as well as for professionals involved in their care.

Many professional bodies such as the Royal College of Nursing, British Medical Association and Royal College of Physicians have now adopted a neutral stance to assisted dying rather than express opposition. It is important that doctors and other healthcare professionals are able to conscientiously object to supporting their patients through an assisted dying request. It is recognised, however, that if the Bill becomes law it would be the patient’s legal right to request assistance, and a referral to another consenting doctor should be made if the initial doctor declined to assist the patient because of their personal beliefs.

As with doctors, any healthcare professional, including pharmacists and others, would not be obliged to participate. This represents current practice in other areas, where a conscientious objection may be present, such as termination of pregnancy or the withdrawal of life-sustaining treatment.

Guidance from the General Medical Council 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 patients distress.

The policy intent is that no person will be obliged to participate in the assisted dying process. The full range of options to achieve this will be explored, including the use of a protection for conscience provision and an ‘opt out’ clause.

Disability

It is recognised that there is a range of views from disabled people on this matter, and it is very important that members of the disabled community are involved when building in appropriate safeguards to take the lived experience of vulnerability into proper account.

There are two key points to bear in mind here. The first is the overarching and simplest safeguard: people would not qualify under this proposal’s criteria by having a disability alone. The choice would only be available if they also have a terminal illness. Second, as noted earlier, the status quo has no protections; building a regulatory framework better protects everyone (including disabled people) because end-of-life conversations can take place out in the open, with explicit safeguards to protect the vulnerable.

Professor Ben Colburn (University of Glasgow, 2021) assessed the hypothesis that the disabled community would be negatively affected by an assisted dying law. Colburn systematically studied reviews over the past ten years, capturing all published data (since legalisation in each jurisdiction) on the uptake of assisted dying amongst vulnerable people, including people with disabilities. The conclusion was that in no jurisdiction was there evidence that vulnerable people were subject to abuse, and the hypothesis that people with disabilities might be disproportionately impacted was not borne out.

Colburn stated that this conclusion is reinforced if empirical data is looked at, “These findings – that there is no evidence that assisted dying laws have a disproportionate effect on people with disabilities – are echoed in all empirical studies which examine the question.”

A recent survey of disability rights organisations in the UK indicated various stances and policies on assisted dying. Of 140 such organisations surveyed, a substantial majority remain silent (84%) or explicitly endorse neutrality (4%). Only 4% explicitly oppose it.

For those who remain neutral, the position of Disability Rights UK is representative:

“This is a complex issue on which people hold different, passionately held views. Disability Rights UK respects those different views.”

As Tom Shakespeare (Professor of Disability Research in the medical faculty at the London School of Hygiene and Tropical Medicine) observes,

“Notwithstanding the blanket opposition of “their” organizations, people with disabilities in the United Kingdom do not oppose assisted dying with one voice… at a minimum the views of the wider community are more mixed than the views of their leaders.”

It is important to recognise that people with disabilities continue to face social stigma, inequalities in access to public life, and a lack of adequate support for basic social, economic, and civic participation. Those problems need urgent attention, however it is possible to advocate for greater resourcing for those provisions whilst also increasing the choices available at the end of life.

Marquardt (2021), appealing to the UN Convention on the Rights of Disabled People, has said that: “people with disabilities deserve access to [assisted dying]. The UNCRPD warns against undue influence in the exercising of legal rights and urges appropriate and effective safeguards against abuse, but it still demands equal access ... The social determinants of health that amplify unequal outcomes will not be resolved by restricting harm-reducing services. The prolongation of suffering impacts not only the individual but their family as well.”

The following questions seek to explore some of the areas of discussion around the legislation necessary to provide any future provision of assisted dying for residents of the Isle of Man. The answers will be analysed and used to give drafting instructions so that a Bill can be prepared and presented to the House of Keys next year for further debate and discussion.

Why your views matter

This public consultation seeks to widen the debate to all of those who live on our island and your responses will help shape the draft Bill which will then be bought to Tynwald for discussion.

Paper copies of the consulation are available from the Tynwald Reception desk and should be returned to:

Assisted Dying Bill Consultation
c/o Clerk of Tynwald’s Office
Legislative Buildings
Finch Road, Douglas
Isle of Man
IM1 3PW