Voices against 'assisted dying'
We were among a number of newspapers and websites to publish the testimony of the late Christopher Jones, whose experience of despair when terminally ill caused him to reflect towards the end of his life on the valuable protection given him by the law; his widow Jenny shared her perspective in the Guardian alongside Dr Ian Basnet, who is tetraplegic. Similarly, we shared Matthew Schellhorn's account of caring for his terminally ill mother and his gladness at not having had to discuss the substance of Lord Falconer's Bill with her.
Disabled people, especially under the auspices of Not Dead Yet UK, have been at the forefront in recent weeks. The Times (£) interviewed 'Britain's best-known disabled actress', Liz Carr, who said 'some on my own medical team have underestimated my life expectancy. It is very common for someone with a disability to be told they are not likely to live until a certain age — and for them to carry on living.' Disabled blogger 'Spoonydoc' noted that few people acknowledge the inconsistency between supporting 'assisted dying' because of the experiences of people like Tony Nicklinson - who would not have qualified - and at the same time claiming that the Bill is closely defined and not open to extension. Hannah, who has inflammatory bowel disease, pursued a point also made by Spoonydoc: it is often wrongly assumed that those who oppose a change in the law have insufficient awareness or experience of these issues and would change their minds if they had.
In an engaging exchange, MND sufferer Pam and her friend Sian considered that a 'choice' like 'assisted dying' would put people in a 'constant position of having to say no. What we need is support for living, not support for dying', while Penny Pepper, writing in the Guardian, challenged readers by asking them to consider how their reaction to her suicide bid at 19 changes when they know that she had suffered from a chronic illness since childhood. Colin Harte, who for many years acted as carer to his friend Alison Davis, spoke to ITV (1m13) on a similar theme, picking up on the weakness of prognoses and people's ability to find purpose, value and hope in life - endangered by Lord Falconer's Bill.
Paralympian and crossbench Peer Tanni Grey-Thompson featured across the media, including the BBC (video), New Statesman and Telegraph. She noted that despite her many successes, 'people come up to me and say "I wouldn't want to live if I was like you".'
Composer and fellow Peer Andrew Lloyd-Webber discussed the point at which his mother had expressed a will to die - convinced that she had become a burden - five years before eventually dying of cancer, and his own battle with depression during which he 'actually got the forms for Dignitas. With hindsight, it was stupid and ridiculous, but I couldn't think what to do.' Fellow member of the Lords and senior palliative care physician Ilora Finlay spoke about her and her mother's experience, similar to Lloyd-Webber's and doubtless to countless others around the country - her mother, four years before her death from breast cancer, considered herself to be a burden but with love and support, she rediscovered her own value and enjoyed 'among the best [years] of her long life'.
Caring for thousands of patients over a career will give healthcare professionals a unique insight into the reality of dying, but many will also have personal experience of serious health issues. As GP Dr Mark Houghton told the Yorkshire Post, 'I am in the strange position of being a doctor who has known what it's like to be made miserable - suicidal even - by chronic pain.' Baroness Hollins, past president of the British Medical Association and the Royal College of Psychiatrists, spoke in the course of a tour de force for the Daily Mail of a friend with motor neurone disease who confided to her shortly before death of how precious his final months had been - having said six months before that he would gladly take a legally prescribed drug.
Lady Hollins was writing in part as a counterpoint to former Archbishop of Canterbury Lord Carey's recently declared support for a change in the law, and his views were soon shown to be out of step with those of serving faith leaders. The Bishop of Worcester, John Inge, wrote movingly in the Guardian about his wife's battle with cancer which caused her death at the age of only 51, and explained why he was glad that the 'choice' of assisted suicide had not been available.
The chief rebuttal to Lord Carey came from current Archbishop of Canterbury Justin Welby, whose unambiguous denunciation in the Times (£) of legislation which would cause a 'sword of Damocles' to hang over seriously ill patients was in part informed by the deaths of both a friend and his own child. Archbishop Welby was one of 24 faith leaders to sign what was described asan 'unprecedented' message to Peers calling for the Bill's rejection.
Another signatory, Chief Rabbi Ephraim Mirvis, wrote in the Telegraph that while he appreciates 'the honest and empathetic intentions that have led Lord Falconer to propose, and others to support, the Assisted Dying Bill... Jews are particularly sensitive to the moral dangers of euphemism. We have seen prejudice cloaked in principle, bias masquerading as high-mindedness...'
Such concerns bring us full circle, back to those of disabled people who have been so prominent in speaking out against this Bill. Disabled inclusion activist Simon Stevens wrote in theHuffington Post that the Lords' handling of this issue and the weight they give to such proposals' flaws 'is a test to see how serious the country is in relation to the full inclusion of disabled people as equal citizens'. We agree, and we hope that people will continue to speak out in the months to come.