Subject: Oral Evidence Sessions: Day 2 Session 1 Australia and Disability
This morning was the second day of oral evidence, where the Committee which is examining the Terminally Ill Adults Bill, questioned experts from Australia and experts in disability.
Make sure to read our summary of yesterday’s morning session and afternoon session.
The first session included three experts from Australia:
- Dr Cam McLaren, a Medical Oncologist from southeast Melbourne, an early adopter of Assisted Dying when it became legal in Victoria
- Dr Greg Mewett, a Specialist Palliative Care Physician from Victoria
- Dr Clare Fellingham, Deputy Director of Medical Services, Royal Perth Hospital
All three experts told the Committee how the Australian states have safe, compassionate and working assisted dying laws. Dr Mewett told the committee:
“I see [assisted dying] as an end-of-life choice amongst a number of end-of-life choices people may or may not make…. They require excellent palliative care up until the point they die. Despite the best palliative care in the world, there are still patients who suffer uncontrollably and intolerably and it’s that small minority of patients who should have a legal option to take control of that stage where it’s irreparable”
Dr Clare Fellingham, Deputy Director of Medical Services, Royal Perth Hospital, highlighted how the Terminally Ill Adults Bill is very similar to the Australian legislation and there are many similarities between the countries and their healthcare systems. She told MPs:
“You have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry-pick the very best bits of what is working well in those jurisdictions to create the very best, most robust but also most patient-centred legislation you can.”
Dr Cam McLaren recommended to MPs that they should increase the eligibility criteria for an assisted death from six months to twelve, and remove unnecessary waiting periods. He told MPs:
“I always say to people, we do not know they have six months left to live until they have six weeks left to live. And we as oncologists know that in the matter of one CT scan, we can change a person’s prognosis from 18 months to three months and all of a sudden they see their life ending and then they begin an application that takes a month to apply.”
“My recommendation has always been to increase the prognostic eligibility criteria from 6 to 12 months, and to reduce the waiting periods that patients will place on themselves regardless of the legislative requirements”
Dr Greg Mewett supported this point, saying:
“We all know patients with all sorts of diseases can lose their cognitive abilities. We don’t see that as logical or reasonable. One of the things we are considering is recommending that the prognosis is changed to 12 months for all, which is in fact what Queensland legislation for, that a 12 month prognosis is reasonable for a range of reasons.”
Session 2:
The second session saw a range of experts with different specialities around disability.
- Professor Tom Shakespeare CBE FBA (London School of Hygiene and Tropical Medicine),
- Dr Miro Griffiths (University of Leeds),
- Yogi Amin, National Head of Public Law and Human Rights, Irwin Mitchell
- Chelsea Roff (Eat Breathe Thrive)
Citing his quality research with disabled people, Professor Tom Shakespeare, told the Committee:
“I’m here to say that most disabled people support the Bill. There are some very vocal people who oppose it and they have every right to do so.
This Bill is restricted to terminal illness which is a very good thing. This is relevant to people who are dying already, it defines terminal illness very clearly. Mental illness cannot be the sole criterion so that would rule out people with eating disorders.
I would like to see better palliative care, more hospices, and more options for terminally ill people. This should be a tool in the toolbox for people who have terminal illness. They may not select it but knowing it’s there will give them a sort of insurance, knowing if they are facing death they have a way out that’s a quicker, better death if they choose that.”
Citing his 20 years of human rights work, Yogi Amin told the committee:
“Professionals, doctors who are meeting individuals, understand what it means to identify safeguarding triggers and where referrals are required. That makes it quite strong in this particular Act.
The wording you have got in the Act I’m comfortable with. I say that as someone who has worked in the area for many years and lawyers will go into courts and pick over words but I think the way it’s drafted it is understood that there is voluntariness as drafted within the Bill.
And coercion, I don’t think additional words are necessary to describe what is required here. A doctor trying to understand that and then a court interpreting it, its pretty clear.”
Dr Miro Griffiths opposes the Bill. He disagreed with many of the safeguards and urged the committee to make it tighter. Raising issues with prognosis, Dr Griffiths said:
“[The Bill] relies on a doctor’s interpretation of prognosis, as the doctor assumes you have six months left to live the doctor may then raise assisted suicide, particularly when we have evidence of certain interventions of mishaps when it comes to prognosis when the individual can live for months or years.”
Chelsea Roff raised concerns about ensuring people with conditions like anorexia will not be able to access assisted dying. Roff made an impassioned plea to ensure those with reversible conditions like anorexia should not be included:
“You really have to get this right because those [vulnerable] people are depending on you.”
Kim Leadbeater MP confirmed this will not be the case, but asked for suggestions of amendments that could be made to provide further reassurance. Amin backed up the claim, saying:
“It will be clear. Anorexia, I don’t consider it to be coming into a terminal illness unless it is right at the end of life, and that doesn’t fit within the parameters of this act. And then you’ve got the Mental Health Act.”
Claire Macdonald, Director of My Death, My Decision says:
“MPs must listen to the international evidence, that is overwhelmingly in support of compassionate assisted dying laws. In every jurisdiction that has an assisted dying law, the public supports it disabled people support it,, it’s safe and it’s working.
We must use this golden opportunity to learn from international experience to make laws more compassionate. People who are dying and people who are suffering want that choice and dignity”
Introduced by the Labour MP Kim Leadbeater MBE, the Bill will allow adults who are terminally ill with six months or fewer left to live to ask for help to end their own lives. In November, MPs voted on the principle of this legislation, passing the second reading 330 votes to 275. The Bill is currently in the Committee Stage, where it will remain for several months of scrutiny before a final vote in the House of Commons next year.
The Bill applies to England and Wales only. A private member’s bill in Scotland by Liam McArthur MSP has been introduced in the Scottish Parliament.
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.
