MPs from the Labour Party, Conservatives, Liberal Democrats, and Green Party have come together to back a new amendment to the Terminally Ill Adults (End of Life) Bill to allow those with neurodegenerative illnesses to access assisted dying when they have twelve months or fewer to live, rather than six, as currently stipulated in the Bill.
The amendment would align England and Wales’s assisted dying law with that found in most of Australia and would be particularly important for people with Motor Neurone Disease (MND), Huntington’s, and Multiple System Atrophy (MSA), as well as some people with Parkinson’s. Under the Bill as introduced, some people with these conditions who meet the eligibility criteria of terminal illness would be excluded as the six-month limit is frequently past the point at which they need an assisted death – and sometimes it is past the point they can even be granted one.
The amendment is being brought by Tom Gordon MP (Lib Dems), Rachel Hopkins MP (Labour), Alicia Kearns MP (Conservative), Siân Berry MP (Green), Lizzi Collinge MP (Labour), Anna Sabine MP (Lib Dems), Neil Duncan-Jordan MP (Labour), Cat Eccles (Labour), and Vikki Slade MP (Lib Dems), with more expected to come on board over the coming days. It is likely to be debated on Tuesday 11 February. Humanists UK and My Death, My Decision have welcomed the move.
Proposing the amendment, Tom Gordon MP, who is on the Bill Committee, said:
‘This Bill is about ensuring people facing painful deaths from terminal conditions can have the choice of how they die. For those with neurodegenerative conditions, in their last six months, it may be too late for them to engage in the bureaucracy of applying. The amendment I have put forward, supported by colleagues across the house, will ensure more people with neurodegenerative conditions will be able to access an assisted death if that is their choice.’
Rachel Hopkins MP, who is also on the Bill Committee, said:
‘Having listened carefully to comments made by witnesses at evidence sessions from other jurisdictions, I can see why this amendment is needed. Our assisted dying law should be a compassionate one, and where that means people with different terminal conditions need a different approach, I support that.’
Lizzi Collinge MP said:
‘I support this amendment to allow the Bill Committee to discuss eligibility for adults with neurodegenerative conditions such as MND. As the legislation stands, patients with MND risk losing their mental capacity before they reach their final six months of life and so wouldn’t be able to access an assisted death.
‘The amendment would only extend the six-month prognosis limit for a limited number of patients with conditions where they need it, ensuring equal access to an assisted death for all terminally ill people.’
Siân Berry MP said:
‘When we debated this Bill at the second reading I raised that other jurisdictions already allow for a separate time limit for terminally ill people with a number of well-known, specific neurological diseases, in which the period of terrible suffering can be much longer than six months. I believe it is important to listen to people who might be left out and made to suffer unnecessarily, if this good legislation passes in its current form. This is about choice and eligibility not the many safeguards built into the Bill, which is why I am supporting this proposal for discussion today.’
Andrew Copson, Chief Executive of Humanists UK, said:
‘As currently drafted, the Bill will bring no relief for the majority of those who travel to Switzerland each year and it desperately needs amendment. We are glad that MPs have listened to evidence put forward by Australian clinicians as well as medical and condition experts. This evidence is clear that the time limit currently in the Bill is not workable for those with neurodegenerative conditions and it needs to change.
‘Humanists UK has campaigned for a compassionate assisted dying law for over 100 years. We wholeheartedly support this Bill and we hope that MPs across the House listen to the powerful evidence that outlines why dignity and compassion are so important. No-one should be forced to suffer.’
Claire Macdonald, Director of My Death, My Decision, said:
‘MPs have heard evidence in the Terminally Ill Adults Bill Committee sessions from doctors in Australia and New Zealand why it would be sensible to permit a 12-month eligibility limit for people with neurodegenerative conditions like Motor Neurone Disease and Parkinson’s. We have a great opportunity in England and Wales to learn from doctors how assisted dying is working in their countries. My Death, My Decision really welcomes the amendment being put forward by these MPs – it is both evidence-based and compassionate.’
Why the amendment is being proposed
Every UK resident who travels to Switzerland for an assisted death has a delibilitating condition meaning they need an assisted death. But most do not have six months or fewer to live and so would not fit the criteria of the current Bill. The ‘six-month’ definition of terminal illness currently exists in law only in parts of the United States and in New Zealand. But even in New Zealand, yearly reports on assisted dying indicate that being unable to confirm a six-month prognosis is the primary barrier for eligibility. There are now proposals to extend it.
Motor Neurone Disease kills six people per day in the UK. 45% of people living with MND say they’d consider assisted dying if the law changed. The MND Association highlighted in its evidence to the committee that the six-month criteria is problematic as prognosis is incredibly difficult and for many the suffering is too great to mean that they can wait that long. Some will also lose mental capacity if forced to wait.
The Multiple Systems Atrophy Trust similarly said in its evidence that the six-month criteria is problematic, stating that 85% of people living with Multiple System Atrophy support a change to the law. The amendment will also extend choice at the end of life to the almost 8,000 people living with Huntington’s in the UK, many of whom would otherwise be excluded from the Bill for similar reasons as described above.
During oral evidence, several witnesses highlighted a problem with the six-month limit, such as Sir Nicholas Mostyn.
Professor Meredith Blake, a law professor at the University of Western Australia, told the Committee:
‘Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses.’
Dr Chloe Furst, Geriatrician and Palliative Care Physician, Adelaide, told the Committee:
‘As a clinician, personally, I think that 12 months for neurodegenerative conditions is really helpful, because—as you have heard—if you are looking at prognosis and trajectories, with things like cancer, a patient will be going along and then often have quite a steep and rapid decline. That six-month prognosis is quite noticeable, but for patients with conditions like motor neurone disease, their decline can be slow and very distressing to them. Also, when trying to balance the prognosis along with getting them through the process, 12 months is really helpful, so if there was any chance, I would be strongly advocating for that.’
Text of the amendment (No 234)
Clause 2, page 2, line 2, leave out “within 6 months” and insert—
“(i) in the case of a neurodegenerative illness, disease, or medical condition, within 12 months; or
(ii) in the case of any other illness, disease, or medical condition, within 6 months.”
Member’s explanatory statement
This amendment changes the definition of a terminal illness for the purposes of the Act to include neurodegenerative illnesses, diseases or medical conditions where a person’s death in consequence of such an illness can reasonably be expected within 12 months.
The amendment does not affect the ability of those who lack mental capacity to access assisted dying under the terms of the Bill. They remain precluded from being able to access it under clause 1(a).
Notes
For further comment or information, media should contact Nathan Stilwell at nathan@humanists.uk or phone 07456200033.
Humanists UK and My Death, My Decision have people and their loved ones who would be affected by this change available for the press.
If you have been affected by the current assisted dying legislation, and want to use your story to support a change in the law, please email campaigns@humanists.uk.
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Humanists defend the right of each individual to live by their own personal values, and the freedom to make decisions about their own life so long as this does not result in harm to others. Humanists do not share the attitudes to death and dying held by some religious believers, in particular that the manner and time of death are for a deity to decide, and that interference in the course of nature is unacceptable. We firmly uphold the right to life but we recognise that this right carries with it the right of each individual to make their own judgement about whether their life should be prolonged in the face of pointless suffering.
We recognise that any assisted dying law must contain strong safeguards, but the international evidence from countries where assisted dying is legal shows that safeguards can be effective. We also believe that the choice of assisted dying should not be considered an alternative to palliative care, but should be offered together as in many other countries.
Read more about Humanists UK’s campaign to legalise assisted dying in the UK.
Humanists UK is the national charity working on behalf of non-religious people. Powered by over 130,000 members and supporters, we advance free thinking and promote humanism to create a tolerant society where rational thinking and kindness prevail. We provide ceremonies, pastoral care, education, and support services benefitting over a million people every year and our campaigns advance humanist thinking on ethical issues, human rights, and equal treatment for all.
My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.
Humanists UK and My Death, My Decision are both members of the Assisted Dying Coalition, along with Friends at the End, Humanist Society Scotland, and End of Life Choices Jersey.