A good death
Caroline Humphries reports on a developing concern – towards a Quaker view on assisted dying
…being sentenced to a form of torture… forced to live longer than they want, when they haven’t got the quality of life This was one reflection from a Friend recently in a discussion on assisted dying. The subject of death and dying is of growing importance to Friends, as the impact of an ageing population is increasingly felt.
Quentin Fowler shared his concern about assisted dying at a Special Interest Group at Britain Yearly Meeting, which was held in late May at Friends House in London. He and Judy Kessler described their consultation with Friends across Leeds Area Meeting. They are now seeking to gather wider views and test whether this should be an issue for national Quaker discernment.
The concern arose in response to the BBC drama A Short Stay in Switzerland. It is based on the true story of Anne Turner, a doctor who discovered she had an illness that was likely to lead to a drawn-out, painful death and sought an assisted suicide in Zurich. Friends were challenged to consider: should we be able to die at home, at the time of our own choosing and in the company of friends and family, without fear of prosecution?
The concern was accepted by Leeds Area Meeting in autumn 2010, and a working party was set up. It heard people’s experiences of family and friends dying, preparations that Friends had made for their own deaths and actions people take out of desperation to bring about a speedier death. It looked at the legal and regulatory framework in other countries – Belgium, the Netherlands and Luxembourg (the ‘Benelux’ countries), which allow voluntary euthanasia; Switzerland, which allows assisted suicide; and the states of Washington, Oregon and Montana in the USA, which allow self-administration of life-ending medication.
On 12 May 2012 the group organised a conference in Leeds on Death and Dying that was attended by one hundred people. Speakers included Jan Bernheim, professor of End of Life Care Research in Brussels, and professor Emily Jackson, a member of the British Medical Association Medical Ethics Committee. Quentin was subsequently involved with a theatre group that put on performances of the play Whose Life is it Anyway towards the end of 2012.
This year the group has organised six Threshing Meetings, at five Local Meetings, to explore the Quaker view of a good death. These aimed to hear the full breadth of views, through worship sharing, and understand the reasons behind those views. The group is working through the responses to the consultation. They are now keen to get the issue of assisted dying onto the agenda for Britain Yearly Meeting. Quaker Life Central Committee has already expressed an interest in considering it.
Consultation
The rest of the Special Interest Group was given over to hearing responses from Friends in the audience. A wide variety of views emerged.
Friends pointed to the Unitarian resolution passed in April 2013, which states that:
1. Any individual who faces an intolerable existence because of a debilitating and/or incurable physical condition should have the right to seek support for the termination of their life in a painless and dignified manner; and
2. Legislation should respect their choice and allow them compassionate assistance in achieving such a death without fear of the prosecution of anyone involved.
Friends talked movingly about family, friends and loved ones whose quality of life has been impaired through severe ill health or terminal illness, who ‘would rather die’. One relative felt unable to take his own life because ‘if I botch it, life will be even worse’. A retired paediatrician talked about the difficulties she and colleagues faced from pro-life staff who would oppose withdrawing life support to children even when hope was gone. She urged greater protections for GPs who help patients die at home.
A Friend spoke of her experience with ME and how this has worsened over time. While it isn’t unbearable at present, she would want to have the option for the future. She invited Friends to consider whether making assisted dying available to those with terminal illness would go far enough. On the other hand, if this change to the law was secured it might build an opportunity to push for further changes later.
Others raised dissenting voices. One Friend urged us to focus on improving palliative and end of life care services before turning our attention to lobbying for assisted dying – to meet the needs of the majority before those of the few. The middle classes have better access to hospice care and this was recognised as inequitable. Only around thirty-five per cent of hospice funding comes from the NHS, with the remainder being raised locally. Quaker action in these areas may be helpful too.
Safeguards
One Friend raised the criticism that ‘people might bump off their old relatives… to get their money sooner rather than later’. Another Friend explained that she was a member of a Disability Forum who are very worried ‘because, especially, people with mental health issues find it very difficult to take on board that they won’t just be shoved out of the way’.
Friends acknowledged that any legalisation on assisted dying would have to be regulated. It would be critical to have robust safeguards in place to ensure it was ‘the will of the person concerned’. The principle of consent is key, which makes it difficult to extend to people with mental health conditions such as dementia or Alzheimer’s.
Evidence from the Benelux countries shows that there has been no increase in the requests for euthanasia since the law came into force, with requests staying stable at around two per cent of people diagnosed with a terminal illness. Quentin also noted that countries that had legalised assisted dying had also taken steps to strengthen their end of life care services and are now recognised as offering some of the best hospice facilities worldwide.
Friends from Leeds submitted evidence to the independent Commission on Assisted Dying chaired by Charles Falconer, the Labour peer. This proposed a legal framework in 2012 that would permit people diagnosed with less than a year to live to seek an assisted suicide if they met strict eligibility criteria. A Bill based on these proposals is currently before the House of Lords.
A Quaker perspective
Friends discussed how assisted dying fits with our perspective as Quakers. One Friend felt that it goes against our Peace Testimony. Would a Quaker focus on this issue give ‘the wrong signal in a time when vulnerable people are under attack’? Another Friend asked ‘where is God in this’? Our discernment should be led by love rather than fear. A Friend challenged us to question whether we want the option of assisted dying ‘because I fear the person I might become’? The end of our lives may bring opportunities for growth through accepting disability and death. Are we imposing ‘our will instead of God’s will’?
Conversely, is life ‘a loan or a gift’? A Friend talked about how choosing to die can be the last empowering action a person in pain can take, and assisting them can be ‘the greatest act of love’ that can be given.
Friends reflected that it is helpful to challenge the taboo so that people talk about death and dying and explore the issues. Bedford Friends have held a meeting about aging and are planning another about dying. The issues are explored by the Quaker Concern Around Dying and Death group. Northumbria Area Meeting is hosting a talk. Leeds Quakers recommended the process they have been through and urged more dialogue. Judy Kessler emphasised that the important thing is ‘the building of community by talking about things that are so vital to us’. She also urged Friends of all beliefs to make their views known during the passage of the Falconer Bill through parliament.
