A disability rights campaigner, a palliative care doctor, a rabbi and an imam yesterday (Wednesday 7 July 2021) addressed the All Party Parliamentary Group on Choice at the End of Life, calling on cross-party MPs and Peers to support a change in the law on assisted dying. This comes weeks after assisted dying bills were introduced to the House of Lords and Holyrood respectively, paving the way for the first debates on prospective legislation in England, Wales and Scotland for more than five years.
The group, co-chaired by Karin Smyth, Labour MP for Bristol South and Andrew Mitchell, Conservative MP for Sutton Coldfield, also heard from Christine Jardine, Liberal Democrat MP for Edinburgh West, on the “sea-change” in views among Scottish parliamentarians and the prospect of success for the upcoming assisted dying bill led by Liam McArthur, Liberal Democrat MSP for Orkney.
there is no hierarchy of rights. Equality for disabled people cannot be addressed by denying dying people the autonomy, choice and control that they want and deserve over their lives.
Dr Stephen Duckworth OBE, a veteran disability rights campaigner who has been a wheelchair-user for 40 years, highlighted that his own strong support for greater end-of-life choice is shared by many other disabled people (86%) and referred to a study of the views of disability rights organisations on assisted dying which found that of those with a stated position, just 4% are opposed. Dr Duckworth called out a “vocal minority of disability rights activists, including in the House of Lords” who falsely claim that the opposite is true, thereby stifling open and fair debate on the issue.
He also criticised non-disabled opponents who “exploit the experiences of disabled people and the equalities and fears we endure in our daily lives”, using this “as a smokescreen for their own agenda to block progress on this issue”. He added that “there is no hierarchy of rights. Equality for disabled people cannot be addressed by denying dying people the autonomy, choice and control that they want and deserve over their lives.”
Dr Duckworth’s MP, Caroline Nokes, Conservative MP for Romsey and Southampton North, was also in attendance and commended him for persuading her on the need for an assisted dying law. Condemning the current blanket ban, she explained that “what we currently have is a system where you’re able to access assisted dying if you’re well enough to travel [to Switzerland] and if you have the fiscal resources to do so, so it is effectively means-tested access.”
Dr Bill Crawley, former GP, practice palliative care lead and experienced palliative care physician, acknowledged that while the majority of people are able to have “what might be termed ‘good’ deaths” with access to end-of-life care, his own professional experiences have shown him that a significant minority of patients still die without adequate symptom control or pain relief – a claim backed up by research by the Office for Health Economics.
choice at the end of life, to have an assuredly dignified death in skilled hands, is the only way we can be sure that patients do not have to tolerate subjectively intolerable symptoms
Dr Crawley said that he had often been asked by patients for more choice at the end of their lives, and that on many occasions he had witnessed suffering beyond the reach of the current options available. This included patients with motor neurone disease experiencing ‘air hunger’ when removing a ventilator in order to hasten death, and cancer patients being strangled by tumours wrapped around their trachea or vomiting faeces due to bowel obstructions. He added that “choice at the end of life, to have an assuredly dignified death in skilled hands, is the only way we can be sure that patients do not have to tolerate subjectively intolerable symptoms.”
On the opposition to law change felt by some palliative care doctors, Dr Crawley commented, “sadly I think their positions may be informed more by personal opinion and beliefs than the wishes of our patients and the evidence we have available to us… I have felt compelled to speak out against those who would portray the whole palliative care community as monolithically opposed to assisted dying, whilst having presumably cared for patients like I have, who would have wanted that choice.”
there is nothing sacred about suffering, nothing holy about agony
Rabbi Dr Jonathan Romain, Chair of the Religious Alliance for Dignity in Dying, spoke of his change of heart on the issue after visiting patients in hospice who experienced unbearable suffering despite high-quality care, commenting that “there is nothing sacred about suffering, nothing holy about agony… life is precious but we can still help people avoid a terrible death at the end of that precious life.” He cited the support among many other religious leaders and laypeople who back law change “because of their faith, not in spite of it”, including the former Archbishop of Canterbury Lord Carey and the Archbishop Emeritus Desmond Tutu.
Dr Taj Hargey, Imam to the Oxford Islamic Congregation and Director of the Oxford Institute for British Islam, reflected that Qur’anic teachings on suffering and ending one’s own life must be assessed in light of modern medical advances, which can often prolong the dying process. He asked, “when the quality of a person’s life has deteriorated to such an extent and reached a point of no return in terms of endless pain and gratuitous anguish, should an empowered individual not have the right to depart this life?”. Dr Hargey concluded that “from the Islamic standpoint, therefore, this voluntary ending of life in these very specific circumstances should be seen as self-selected relief; a personal liberation from intolerable agony.”
Christine Jardine MP discussed the new assisted dying bill introduced by Liam McArthur MSP, saying that “there has been something of a sea-change within the Scottish parliament” on the matter of assisted dying and that “there is a feeling that the time has come; that this is the next great liberal reform”. Ms Jardine added she was “quietly confident” about the success of the forthcoming bill in Holyrood, a consultation on which will be launched in early autumn.
Sarah Wootton, Chief Executive of Dignity in Dying, said,
“The speakers today reflect views which are shared by many in their respective fields of disability rights, palliative care and faith – that greater choice and control for dying people is urgently necessary and benefits the whole of society, and that rights for terminally ill people exist in tandem with rights for disabled people, with improving end of life care as a whole, and with respect for religious values and beliefs.
“With debates on assisted dying due in the House of Lords, Scotland and Jersey by the end of this year, it is clear that momentum for change is building here as it is around the world. Parliamentarians in all corners of the British Isles have a duty to recognise the strong support right across society, and examine the mounting evidence that demonstrates current options are simply not sufficient for dying people or their families. It is time we joined the ever-growing number of states and nations with safe, compassionate assisted dying laws.”