MPs are pushing for assisted deaths to be available for people suffering from Motor Neurone Disease or Parkinson’s who have a year left to live in a new amendment to the bill.
Under the current Terminally Ill Adults Bill, people must have a life expectancy of six months or less to qualify for support to end their lives.
However, campaigners say that for many people with neurodegenerative illnesses, such as Huntington’s or Multiple System Atrophy, they are too ill in their last six months of life to engage with the process of applying for an assisted death.
LibDem MP Tom Gordon, who sits on the bill scrutiny committee, has brought the amendment with the backing of MPs from across the political spectrum.
The amendment would allow terminally ill people with a “neurodegenerative illness, disease, or medical condition”, and who are expected to die within a year, to qualify. A person must have mental capacity to start the process under the terms of the bill.
Mr Gordon explained why he was pushing for the change, saying: “For those with neurodegenerative conditions, in their last six months, it may be too late for them to engage in the bureaucracy of applying”.
Labour MP Rachel Hopkins, who is also on the Bill committee, said she was keen to back to the amendment after hearing evidence from experts abroad.
A palliative care physician from Adelaide, Australia, where assisted dying is legal, told MPs that it was better to have a 12-month period. Dr Chloe Furst said: “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.”
Fellow Labour MP Lizzi Collinge said that the legislation as it stands would be too limiting for people with conditions such as Motor Neurone Disease, which causes muscle weakness over time.
She added: “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.”
Mary, who was diagnosed with Parkinson’s a year ago, said it was “fundamentally unfair” that she wouldn’t have access to an assisted death. The 70-year-old, who just wanted to use her first name, said: “I don’t know what the future holds, but Parkinson’s is a degenerative condition and I know that if I became very ill and less able to live a full, dignified life, then I would want to have the option of a facilitated death.”
She said: “A lot of people don’t even choose to use it in other countries, but it gives them certainty. I may live for another 15 years but having the option of an assisted death when I need it would make the intervening years so much more enjoyable”.
Laura Tomlinson, whose mother Kay Bennison died last year after a 12-year battle with Parkinson’s and other health complications, backed the new amendment saying that it would have given her mum more time to prepare for death.
Ms Tomlinson said: “Mum deserved dignity. She didn’t want others taking care of her hygiene. She didn’t want it, but she had no choice.”
She added: “Mum was worried more about the going rather than being gone. She was so scared of how she might die; the worry on top of everything else is just cruel.”
