Devon family condemn ‘cruel’ assisted dying ban after mother’s traumatic death from motor neurone disease last year
The family of terminally ill Devon woman Jane Parker, who campaigned for a change in the law on assisted dying before her death from motor neurone disease last year, is urging Parliamentarians to support the Assisted Dying Bill due to be debated in the House of Lords next week.
Jane’s husband Adrian and daughters Hazel, Emma and Clover are speaking out about the suffering Jane experienced in the weeks and days before her death in December 2020, condemning the UK’s blanket ban on assisted dying which they believe denied her the choice and control she wanted at the end of her life.
The family’s plea for a change in the law will be broadcast in an interview with Adrian and Hazel on BBC Spotlight tonight (Monday 11th October 2021), less than two weeks before the Assisted Dying Bill receives its Second Reading in the House of Lords (Friday 22 October 2021). The Bill, proposed by Dignity in Dying Chair Baroness Meacher, would legalise assisted dying as a choice for terminally ill, mentally competent adults in their final months of life – a change supported by 84% of the British public.
Two independent doctors and a High Court judge must be satisfied that an individual making a request is over 18, terminally ill with six months or less to live and fully mentally competent, and that they are making a clear, settled decision of their own volition. A prescription for life-ending medication would then be granted, which the individual could take at a time and place of their choosing.
Adrian, 70 , Jane’s husband of 43 years, from Kingsbridge said:
“As a retired medical professional, Jane was acutely aware of what lay ahead of her; she knew that she would effectively be tortured to death and did not want to go through that, nor have us witness it. The cruel ban on assisted dying in this country denied her the right to go on her own terms.”
“Jane was forced to pursue an assisted death at Dignitas, but the pandemic and the speed of her deterioration made travel to Switzerland impossible. She was also fearful of putting us at risk of prosecution for helping or accompanying her. Jane wanted to die here in Devon, in our beloved home that has been in her family for three generations, not in an anonymous hotel room in a foreign country.”
Hazel, 40, said:
“She had excellent care from district nurses, the GP and a palliative care consultant, and as a family we rallied around Mummy to support her as best we could. But as her illness progressed, Mummy had little control – she lost her ability to speak, then her ability to swallow meaning she needed a feeding tube, and latterly she struggled to breathe. I wish she had been allowed the option to die peacefully when she felt her quality of life was no longer adequate, but instead she was forced to endure a distressing end, suffering in the very ways she’d feared.”
Emma, 42, said:
“If assisted dying had been legal in this country, it would have provided Mum a significant degree of reassurance from the time of her diagnosis. She would have been able to get on with living, safe in the knowledge that she could take control if things became unbearable for her towards the end.”
Clover, 37, said:
“We want to continue Mum’s legacy, to call for a change in the law on assisted dying so that other terminally ill people need not suffer as she did. The law at the moment puts people in a barbaric, desperate situation; people who haven’t lived through it cannot possibly claim that it’s working. We appeal to Parliamentarians to listen to families like ours with an open mind, and to ask themselves if they are willing to stand by a law that is causing so much suffering.”
Richard Scheffer, former palliative care consultant and leader of Dignity in Dying’s Devon group, said:
“I have seen palliative care enable many peaceful deaths, but I am also keenly aware of its limits. It is not a panacea, and if we truly want to provide the best possible care for people at the end of life, we must also offer true choice and control, following in the footsteps of states across the US, Australia and the whole of New Zealand.
“Momentum for change is building right across the British Isles, with a bill in the House of Lords to be debated next week, a consultation on a bill underway in Scotland, and Jersey due to debate legislation in the coming weeks. If you agree that we need safe, compassionate assisted dying laws for the UK, please join our Devon group and help us make this a reality.”
*ENDS*
For more information or interview requests, please contact Ellie Ball at ellie.ball@dignityindying.org.uk or 07725 433 025.
Notes to Editor
Dignity in Dying
Dignity in Dying campaigns for greater choice, control and access to services at the end of life. It campaigns within the law to change the law, to allow assisted dying as an option for terminally ill, mentally competent adults with six months or less to live.
Assisted dying is prohibited in England and Wales under the Suicide Act (1961), and in Northern Ireland under the Criminal Justice Act (1966) which states that anyone who “encourages or assists a suicide” is liable to up to 14 years in prison. There is no specific crime of assisting a suicide in Scotland, but it is possible that helping a person to die could lead to prosecution for culpable homicide.
Healthcare professionals
The British Medical Association (BMA) last month (Tuesday 14 September 2021) voted to drop its official opposition to a change in the law on assisted dying in favour of neutrality, following a debate at its Annual Representative Meeting.
The largest ever poll of British doctors on assisted dying, conducted by the BMA in February 2020, results of which were released in October 2020, found overwhelming support for a change to the BMA’s current stance of opposition to an assisted dying law (61%), and that half of doctors personally support a change in the law (50%).
In March 2019, the Royal College of Physicians (RCP) dropped its longstanding opposition to assisted dying in favour of neutrality following a member survey.
The Royal Society of Medicine, Royal College of Nursing (and Royal College of Nursing Scotland), the Royal College of Psychiatrists and the Royal Pharmaceutical Society all also hold neutral positions on assisted dying.
The Academy of Medical Royal Colleges, Association of British Neurologists, General Medical Council, General Pharmaceutical Council, Royal College of Anaesthetists, Royal College of Obstetricians and Gynaecologists, Royal College of Ophthalmologists, Royal College of Paediatrics and Child Health, Royal College of Pathologists, Royal College of Physicians of Edinburgh, Royal College of Radiologists and Royal College of Surgeons of Edinburgh have no stated position on a change in the law on assisted dying.
In September 2020, Eminent GPs Prof Aneez Esmail and Sir Sam Everington launched a legal challenge to the Royal College of GPs (RCGP) alongside the Good Law Project and Dignity in Dying over RCGP Council’s decision to maintain opposition to assisted dying despite its own survey showing a dramatic shift in GP opinion. The Association for Palliative Medicine and the Royal College of Surgeons of England also hold a stance of opposition to a change in the law on assisted dying.
Assisted Dying Bill
Baroness Meacher’s Assisted Dying Bill was selected seventh in the House of Lords private members ballot in May and received its First Reading on Wednesday 26th May 2021. It will receive its Second Reading on Friday 22 October 2021. The full text can be found here: https://bills.parliament.uk/bills/2875. It is based on a bill introduced by Lord Falconer in 2014. Rob Marris MP introduced a similar bill in 2015 which was defeated in the Commons.
The functioning of the current law on assisted dying was the subject of a Backbench Business Committee Debate in July 2019 and a Westminster Hall debate in January 2020, at which a majority of MPs speaking called for a review of present legislation.
In April 2021, the then Health Secretary announced to the All Party Parliamentary Group on Choice at the End of Life that he had requested data from the Office for National Statistics on suicides by terminally ill people and assisted deaths in Switzerland of British nationals. This followed comments Mr Hancock made in the House of Commons in November 2021 and January 2021 highlighting the Government’s role in obtaining a fuller understanding of the functioning of current assisted dying laws and stressing the importance of suicide prevention and patient safety measures.
Assisted Dying Scotland Bill
Liam McArthur, Lib Dem MSP for Orkney, lodged the ‘Assisted Dying Scotland’ Members Bill proposal with the Non-Government Bill Unit (NGBU) of the Scottish Parliament in June 2021. A Consultation on the contents of the bill launched in September 2021.
The proposal seeks to introduce the right to choose an assisted death for terminally ill, mentally competent adults in Scotland.
Jersey’s citizen’s jury on assisted dying
Since March 2021 a citizen’s jury in Jersey has met to hear expert and personal testimony on assisted dying and to consider a change in the law on the island. The jury published a full report on its recommendations in September, calling for islanders who are terminally ill and unbearably suffering to be able to request medical assistance to end their own life. Over the coming months the States of Jersey will develop policy proposals and the jury will publish a final report before a debate in the States Assembly by the end of this year.
International developments
In the US, assisted dying as an option for terminally ill, mentally competent adults in their final months of life is legal in 11 jurisdictions: Oregon (1997), Washington, Vermont, Montana, the District of Columbia, California, Colorado, Hawaii, New Jersey, Maine and New Mexico (legislation approved April 2021).
In Australia, assisted dying is a legal choice for terminally ill citizens in Victoria (June 2019), Western Australia, Tasmania and South Australia (legislation approved June 2021). A bill is currently being debated in Queensland.
New Zealand is set to implement an assisted dying law allowing this option for terminally ill, mentally competent citizens by November 2021, following a public referendum on the End of Life Choice Act in October 2020.
Spain passed a law allowing assisted dying in March 2021 to be implemented later this year.
In Ireland, assisted dying is set to be examined by a Special Oireachtas Committee, as recommended by the Justice Committee in July 2021.
Austria’s Supreme Court ruled in December 2020 that its blanket ban on assisted dying is unconstitutional and the practice will be decriminalised in limited circumstances by 2022.
Germany began considering potential assisted dying legalisation in January 2021 after its Constitutional Court struck down the ban in 2020.
Canada introduced assisted dying legislation in 2016 permitting those suffering from a grievous and irremediable medical condition.
In Colombia legislation was passed in 2015 which permits those with terminal illness or unbearable suffering to request access to life-ending medication.
Assisted dying is permitted in Switzerland, including for foreign nationals, and broader right-to-die laws are in place in Belgium, the Netherlands and Luxembourg.