Written evidence submitted by Evangelical Alliance (ADY0358)
Introduction
The Evangelical Alliance has engaged in assisted dying / suicide policy since 2003 and most recently submitted written evidence to Scotland’s Assisted Dying for the Terminally ill consultation. In all of our written and public engagement we advocate for improved palliative care services for those nearing the end of life.
The Evangelical Alliance UK is the largest and oldest body representing the UK’s two million evangelical Christians. Established in 1846, today we work across a diverse constituency of over 18,000 individual members, as well as over 3,000 churches and 500 organisations. The Evangelical Alliance is the founding member of the World Evangelical Alliance, which unites evangelical alliances based in different countries around the world, representing anywhere from 300 million to a billion evangelical Christians. This global reach reflects the influence of evangelical faith, which can also be seen in the huge social and ethnic diversity in British evangelical churches.
Our engagement with assisted dying / suicide is based on the biblical principle that all life is of inherent value and must be protected at all cost. We believe legalising assisted dying in England and Wales will lead to unintended consequences, particularly for those with learning and physical disabilities, elderly and suffering with mental distress. More can and must be done to ensure people nearing the end of their life can access better support and provisions – from medical intervention to adequate housing.
We have responded to many of the questions in the call for evidence in further detail, but we want to put on the record our disappointment in the imbalance of the questions. The majority of questions seek to source opinion that supports assisted dying in law rather than explores the efficacy and danger of such a law being introduce. We hope the committee consider seriously the concerns raised in this submission and others strongly opposed to legalising assisted dying.
1.1. In a recent study, the United Kingdom’s end of life care ranked number one out of 81 countries (Finkelstein et al, 2021). This is an achievement this country can be proud of and an opportunity for the government to build upon. But with projections indicating a rise in age of population (ONS (2019) estimates that one in four people in the UK will be aged 65 years or over by 2050), the demand and pressures on the palliative care system are only going to increase. The committee must encourage the government to make palliative and end of life care a national objective and longer-term policy priority.
1.2. Section 21(1)(h) of the Health and Care Act 2022 sets out a legal duty on Integrated Care Boards to ensure those with palliative and end of life care needs could access good quality and personalised palliative care and support. This, along with NHS England producing statutory guidance for integrated care boards in how to implement this duty (NHS England, 2022) are steps in the right direction. However, in reality access to such care is restricted by funding and dependent on where the person lives.
1.3. Unlike other healthcare services, only about a third of funding for palliative care services is provided by the NHS, making fundraising and donations vital to palliative care provisions (UK Parliament Post, 2022). Those within the palliative care sector have heavily criticised this system. Hospice UK's Interim Chief Executive stated: “in its current form, the system is inefficient and wouldn’t be tolerated in other areas, such as maternity services” (Hospice UK, 2022). For palliative care to meet the needs of the population across ages, there must be further funding.
1.4. There is a particular need to improve palliative care for those living in socially deprived areas. Research conducted by palliative care provider Marie Curie shows that inequalities relating to place of death were exposed during the Covid-19 pandemic, with the number of people dying at home increasing the least amongst people in the most deprived groups (Marie Curie, 2022). Additionally, the Institute for Public Policy Research (2021) found that although people in the most deprived parts of the country spend more time in hospitals, they are getting £400 less healthcare investment per person in their last year of life. The postcode lottery access to palliative care must end.
1.5. Palliative care must become a standardised practice in patient care in England and Wales. As discussed later, evidence from other countries shows that people often opt for assisted dying because they are scared of being a burden to their family or because there are limited health care provisions – this cannot be allowed to be the case in the UK. The British people must be better informed of what palliative care is and the support available to them, and increased support must be given to their families and loved ones as they near the end of their life.
2.1. We recommend the committee read “Comparison of official reporting on assisted suicide and euthanasia across jurisdictions” research paper included in BMJ Supportive & Palliative Care journal and consider inviting one of the authors to give oral evidence to this inquiry. The study examined official data from 16 different jurisdictions where assisted dying is legal. It found data inconsistent and that ‘comparing the practice of assisted suicide and euthanasia across jurisdictions challenging’ (BMJ Support & Palliative Care, 2022, p1).
2.2. In 2016, Canada’s medical assistance in dying (MAiD) became law. Three years on, the ‘reasonably foreseeable death’ requirement was removed, extending assisted dying to patients with no terminal illness. Canada’s assisted dying law is often held up as a gold standard by keen supporters, but the impact it has on vulnerable people is worrying and should be given consideration. Take, for example, the tragic case of Alan Nichols, a British Columbian man who suffered from depression. Against family wishes, Alan received medical assistance to die despite having no terminal illness and having never accessed support for his mental health issues (CTV News, 2019).
2.3. Assisted deaths in Canada are outnumbering those in Belgium and the Netherlands, whose assisted dying legislation came into effect in 2002 and 2001 respectively. The Lancet medical journal recently published an article expressing concerns over the excess use of physician assisted dying in Canada. Citing Trudo Lemmens, a leading health law specialist based at the University of Toronto, the article stated: “what was originally conceived as an exceptional practice in medicine has quickly become normalized”. It was highlighted that Canada’s “permissiveness”, following the legal change that scrapped the foreseeable death requirement in March 2021, led to a 34% spike in the number of Canadians who died with the assistance of a physician in the remaining 9 months of 2021 (The Lancet, 2022, p801).
2.4. There is evidence that people are seeking assisted suicide not only to release them from pain, but to deal with social issues that come with disability or illness, such as poverty or housing concerns. For example, Jonis is a Canadian woman that suffers with multiple physical disabilities, has cancer and supports a daughter with disability. She is considering MAiD because she is struggling to financially support herself and her family (Global News, 2022).
2.5. Inequalities faced by disabled people are driving them towards assisted suicide. Marie-Claude Landry, the Chief Commissioner of the Canadian Human Rights Commission (2022), has stated: “For many people with disabilities, systemic inequality results in inadequate access to services, which means that their fundamental rights continue to be denied and their dignity diminished… In many instances, people with disabilities see ending their life as the only option. We must do more to fight for those who continue to be denied the fundamental human rights to which we are all entitled”. Tim Stainton, director of the Canadian Institute for Inclusion and Citizenship at the University of British Columbia, described Canada’s law as “probably the biggest existential threat to disabled people since the Nazis’ program in Germany in the 1930s” (AP News, 2022).
2.6. From March 2023, the criteria for MAiD will expanded to include those with mental illness. This will mean that even more of the most vulnerable in Canada who are living with physical disability, in poverty or experiencing poor mental health are eligible for assisted dying. Canada’s assisted dying laws are not to be admired or replicated, they discriminate against and lead to the unnecessary death of vulnerable people.
2.7. A case that came to light in British Columbia last year was that of 61 year old Donna Duncan. Donna ended her life through medically assisted suicide in October 2021. Canadian police are now investigating the case after her adult daughters reported that she should never have received medical help to die. While MAiD was listed as Donna’s cause of death, the underlying reason was stated to be Central Sensitivity Syndrome, believed to have developed following a car accident. However, her daughters claim that she was never officially diagnosed with this condition, that she avoided medical intervention (including in the form of pain relief), and that she was suffering from undiagnosed depression as a result of the car accident. Donna’s daughters are campaigning around tightening of MAiD laws in Canada, stating: “There [are] too many gray areas that are allowing doctors to end people's lives instead of treating them” (CTV, 2022).
2.8. In the Netherlands general practitioners are reconsidering the efficacy of patients with advanced dementia being eligible for medical assisted dying. Some have suggested that an Advance Euthanasia Directive (AED) is enough to allow the ending of the life of a dementia patient, even after they lack capacity to confirm their decision. However, 42.2 percent of participants in a study carried out with GPs did not agree that an AED can replace an oral request if communication with the concerned patient has become impossible. A further 37.4 percent of respondents said that an AED was ‘maybe’ adequate, with only 18 percent expressing support for use of AEDs (Schuurmans et al, 2021).
2.9. In cases relating to dementia or other such degenerative diseases, assisted suicide is seen as a preferred option because of “caregiver burden”. It is problematic that people are making decisions on whether to end their life over fear that they will be a burden to their loved ones. Through greater access to high quality health and palliative care, as well as more resources that assist families in handling finances, etc., of a loved one with dementia, that feeling of burden can be mitigated while sparing the expense of a life.
3.1. Medically assisted dying is at odds with healthcare professionals training to safeguard, protect and preserve life. In 2019 the World Medical Association “reiterated its strong opposition to euthanasia and physician-assisted suicide” (World Medical Association, 2019). As recently as 2021, 1700 UK healthcare professionals sent an open letter to then health secretary, Sajid Javid, voicing their opposition to the legalisation of assisted suicide (Christian Medical Fellowship, 2021). Physician-assisted suicide would fundamentally change the relationship between patient and health practitioner.
3.2. Trust between patient and medical professional is essential for public confidence in the health service quality and expertise of practitioners. Take for example, the most recent public outrage to the ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) scandal for those with learning disabilities and in care homes during the pandemic (Guardian, 2021). The Care Quality Commission in its interim report concluded, “some care residents were wrongly subjected to decisions, leading to potentially avoidable deaths” (The British Medical Journal, 2020). A similar risk is created when assisted suicide is legalised.
4.1. There should be no ability to end life on the grounds of mental health, no “safeguards” will be strong enough to prevent unnecessary deaths.
5.1. There are no protections that can be put in place that would be strong enough to protect people from deciding to end their own life based on subpar reasons such as being a burden to their family.
6.1. We believe legalising assisted dying in England and Wales will lead to unintended consequences, particularly for those with learning and physical disabilities, elderly and suffering with mental distress.
7.1. We believe legalising assisted dying in England and Wales will lead to unintended consequences, particularly for those with learning and physical disabilities, the elderly and those suffering with mental distress.
8.1. The government should introduce policies, legislation and funding that promote and strengthen Article 2 of the Human Rights Act (Right to Life). Greater funding and expansion of palliative services and end of life care across the UK should be the government’s focus and policy commitment longer term.
8.2. The priority of this government and successive governments should be to implement in full the ‘Inclusive Britain’ report, particularly recommendation 11. Recommendation 11 seeks to understand and reduce health inequalities in life expectancy, maternal health outcomes amongst ethnic minority women and other health concerns that have arisen since the pandemic. Establishing the Office for Health Disparities is a positive step and with further research and development will better inform policymakers in how best to reduce health inequalities and poverty, which are contributing reasons to individuals requesting assisted dying.
8.3. The government should also seek to implement the recommendations in the All-Party Parliamentary Group for Terminal Illness’ “No place like home?”. The report found that the benefit system was inadequate in providing financial stability and often those at the end of their life were living in poor housing and suffering with fuel poverty (APPG for Terminal Illness, 2021).
8.4. Finally, the government must show political will and implement the national suicide prevention strategy, particularly area three “reduce access to the means of suicide”. Introducing an assisted dying/suicide law significantly undermines this strategy.
Jan 2023