By Catherine Pepinster
A bill to legalise assisted dying in England and Wales will change the relationship between doctors and their patients, and fail to fully protect medical professionals, according to experts in medicine, ethics and disability. It will also mean that society will change from an emphasis on “remove the suffering” to “remove the sufferer”, says the palliative care consultant Dr Matthew Doré.
With days to go before MPs vote on a private member’s bill on assisted dying, hundreds of people — including doctors and others working in medicine and nursing — gathered at the Church of the Immaculate Conception in Farm Street, Mayfair, to hear experts discuss the bill and warn of its flaws.
They were warned that although the Terminally Ill Adults (End of Life) Bill, introduced by Labour MP Kim Leadbeater, says doctors and other medical practitioners will not be required to provide assisted dying if it goes against their conscience, there are concerns that pharmacists, who might be asked to provide the medication, and nurses might be implicated.
Dr David Albert Jones, professor in bioethics at St Mary’s University, Twickenham, warned that hospices and other care facilities run by institutions such as faith organisations that object to assisted dying, may have problems if even one member of staff expresses support for it.
And Baroness Grey-Thompson, the former Paralympian, said disabled people were deeply fearful of the bill, even though it had been drawn up to allow assisted dying only for those who have a terminal illness.
“We have been told that this bill will not be widened and amended but our job [in parliament] is amending legislation. It can be widened later,” she said.
And she warned that even if the bill fell when the House of Commons voted on it on Friday, the issue would come up again. “Whatever happens on Friday, it won’t go away. It will change our relationship with society.”
The bill, published on 14 November, would enable someone expected to die from a terminal illness within six months, to be helped to die, so long as they are over 18, were of sound mind, registered with a GP and had lived in England and Wales for at least 12 months. The terminally ill patient would need to make two separate declarations, witnessed and signed, about their wish to die, be supported by two doctors and a High Court judge would need to give final approval.
While the bill is a free vote, several government ministers have expressed their views on the bill this weekend.
The Observer reported a letter from the justice secretary, Shabana Mahmood, to her constituents, opposing the bill, saying “the state should never offer death as a service”. In reply, Lord Falconer, who has tabled several bills for assisted dying in the Lords, referred to her Muslim faith and said cabinet ministers should not impose their religious beliefs on others.
In a round of TV interviews yesterday, Ms Leadbeater said she had no doubts about the bill and safeguards would be “the most robust in the world”. Liz Kendall, the work and pensions secretary, backed the bill and said it would give people “power, choice and control” over their own deaths.
Another intervention this weekend was an open letter, published in The Observer, against the bill from a group of 29 faith leaders, including the Bishop of London, Dame Sarah Mullally; the Roman Catholic Cardinal Archbishop of Westminster, Vincent Nichols; the Chief Rabbi, Ephraim Mirvis; Sayed Abdul Saheb Al-Khoei, secretary general of Al-Khoei Foundation; Qari Asim, imam and chair of the Mosques and Imams Advisory Board; and Anil Bhanot, managing trustee of the Hindu Council UK.
They said legalised assisted dying, rather than promoting compassion, would lead to people feeling pressured to die. A change in the law would turn into “a duty to die”, they wrote.
The letter said they were “deeply concerned about the impact the bill would have on the most vulnerable, opening up the possibility of life-threatening abuse and coercion”, and that in places such as Oregon and Canada, which have introduced assisted dying, “promised safeguards have not always protect the vulnerable and marginalised. Even when surrounded by loving families and friends, people towards the end of their life can still feel like a burden. Investment in palliative care is the policy of a truly compassionate society.”
Further opposition raised yesterday was from Sir James Munby, a former head of the High Court family division who told The Sunday Times that judges should have no place deciding who should die or not and that Ms Leadbeater’s bill was “defective”.
Two opinion polls this weekend suggest a majority of the public is in favour of the bill. A YouGov poll found almost three-quarters of the public believe in the principle that assisted dying should be legal, with 13 per cent opposed, while another poll for the think tank More in Common showed 65 per cent in favour, 13 per cent opposed, and 22 per cent were undecided.
However, Dr Doré told the audience at the Farm Street gathering that surveys conducted by the British Medical Association and the Royal College of Physicians show that “doctors closest to the dying are opposed to this”.
“Most people trying to do this come from a good place,” said Dr Doré, who is honorary secretary of the Association of Palliative Care Medicine for Great Britain and Ireland, but he said they were wrong about pain.
One of the bill’s key supporters, Lord Falconer, a former Labour minister, has said people can endure terrible pain when they are dying and can suffer horribly in their final illness because the doctor cannot provide help to end the agony.
But Dr Doré challenged this argument: “Dying is not painful,” he said. “In the vast majority of cases it is not about being in agony. Pain is actually one of the easiest things to control,” he said, comparing it to helping people cope psychologically and spiritually when they first learn they have a terminal illness.
“I have never really seen that kind of pain and I have seen an awful lot of dying people. The bad deaths I have seen are of people who do not want to die — people with children — and they would not be asking for assisted dying.”
Dr Julian Hughes, former professor of philosophy and old age psychiatry, and co-editor of the recently published The Reality of Assisted Dying, said he, too, had not seen uncontrollable pain in his medical career, yet relatives often mentioned pain as a problem several months after a patient had died.
“What we need is pain clinics to work more closely with palliative care,” he said, while Dr Doré urged the government to put more funds into palliative care. “Palliative care is not fully funded by the NHS,” he said. The health secretary, Wes Streeting, said last month that part of his reason for planning to vote against the assisted dying bill was because end-of-life care was not good enough to give people an informed choice.
The lack of good palliative care was also a main reason why former the prime minister, Gordon Brown, also spoke out against the assisted dying bill over the weekend.
He wrote about the death of his daughter Jennifer, who died after 11 days. He said: “She died in our arms. But those days we spent with her remain among the most precious days of my and Sarah’s lives. The experience of sitting with a fatally ill baby girl did not convince me of the case for assisted dying; it convinced me of the value and imperative of good end-of-life care.”
But, he said, as things stood, care and on-hand personal assistance was still in short supply for terminally ill people and end-of-life care was the biggest postcode lottery of all.
“Would it not be better,” he asked, “to focus all our energies on improving all-round hospice care to reach everyone in need of end-of-life support?”
