A new amendment to the Terminally Ill Adults (End of Life) Bill aims 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.
Text of the amendment (No 234):
Clause 2, page 2, line 2, leave out “within 6 months” and insert—
-
- in the case of a neurodegenerative illness, disease, or medical condition, within 12 months; or
- 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 cannot access an assisted death under clause 1(a).
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.
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.’
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
Most UK residents who travel to Switzerland for an assisted death 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.
During oral evidence, several witnesses highlighted a problem with the six-month limit, such as Sir Nicholas Mostyn.
Notes:
Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request
For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.
Media can use the following press images and videos, as long as they are attributed to “My Death, My Decision”.
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.
