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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.

 

This afternoon, the Committee which is examining the Terminally Ill Adults Bill, heard evidence from palliative care, and legal and international experts.

Our summary of the morning session is available here, but here is our summary of the afternoon session:

Session 1:

• Dr Rachel Clark, Palliative Care doctor 
• Dr Sam Ahmedzai, Emeritus Professor at the University of Sheffield
• James Sanderson, CEO of Sue Ryder, 
• Dr Sarah Cox, President of Association of Palliative Medicine

This session saw a range of reviews looking at the state of palliative care in the UK and whether individuals can make an informed decision about assisted dying if there’s not currently uniform equality of access. 

Dr Sam Ahmedzai said:

“British people have had that option for many years since Switzerland offered it. It’s clear, it’s selecting our people who are better off, and more functionally capable. They can do that, so it discriminates against disabled people who go long before they need to. They need to because they mostly want to go on their own without dragging relatives along so it’s doubly damaging for families because they have to say goodbye long before they have to do that.”

Dr Rachel Clark told MPs:

“If there is one thing that I would say to the Committee about making the bill as robust and strong and safe as possible. Please consider seriously the matter of education and training from day one of medical school and onwards. Death is at the periphery of a medical school curriculum, you might get a week of palliative care in five years”

James Sanderson said:

“Increasingly hospices are reading beyond the walls of the hospice into the community, people want to die at home, supporting people at home enables us to go out into the community.”

Dr Sarah Cox said:

“I accept there will be people even with a very good palliative care system who will still choose assisted dying. We currently don’t have the palliative care system that we need and that’s what concerns me.” 

Session 2: 

• Sir Max Hill KC,
• Alex Ruck Keene KC (Hon),
• Sir Nicholas Mostyn

Sir Max Hill told MPs that in his experience of working as Director of Public Prosecutions, he oversaw a number of cases to do with people travelling to Dignitas. He told MPs

“In each of the 27 cases I considered the deceased individual was already dead and that is when the scrutiny started. A major advantage of this Bill is that would be reversed and scrutiny would be before death.”

Sir Nicholas Mostyn told MPs that he may still have to go to Dignitas, even if the Bill passes. He told MPs:

“I fear that I am one of the people who has to go to Dignitas, and frankly I can afford to do that, because this bill is never going to provide an assisted death for me. 

I’m not going to be graphic about what the advanced stages of Parkinson’s are like, but the medical members amongst you will be able to describe what is likely, not definitely, but likely to await me. It is either going to be a poor death here, or to go somewhere like Dignitas. I would be very surprised, if my children drove me to Calais, and then drove me onto Zurich, I would be very surprised if any prosecution ensued…” 

A large part of the session focused on the legal aspects of the Bill, including if it could be challenged in the courts.

Alex Ruck Keene KC said: 

“We get into this enormous argument about “is it inevitably discriminatory?”, and courts today have been very clear we are not going to get into it, it’s for parliament to decide whether or not to make assisted dying legal.”

“Once it has been made legal for some but not others, there’s a difference in treatment. Whether it is discriminatory, and contrary to an article in the ECHR, depends on whether that difference is justified.

Parliament needs to be very very clear why, if you’re going to limit this, why it could be explained to somebody that you are not eligible and that it is a difference in treatment but it is perfectly justified.”

The session also went into depth about the current clause in the Bill that mandates the patient seek approval from the High Court. Committee members pressed the experts on whether other potential systems were workable, such as panels and tribunals. 

Session 3:

• Dr Ryan Spielvogal (Senior Medical Director for Aid in Dying Services, Sutter Health, USA),
• Dr Jessica Kaan (Medical Director, End of Life Washington)

On concerns about coercion, Dr Ryan Spielvogal, Senior Medical Director for Aid in Dying Services in California, told MPs:

“I’ll tell you in practice it just doesn’t happen. So I’ve seen assisted dying laws go into practice across numerous states. I have helped many many people through this process, I have never seen a case of even suspected coercion.

People are just not that good as actors. We get the family out of the room, we dig deep into their concerns and their justifications and reasoning behind their choices. It is often extremely crystal clear. They are focused on their quality of life, they are focused on their suffering.

‘I don’t ever get the sense from them, the family, or doctors, or anyone are coercing them into a decision. If anything, I’ve seen it many times the other way around. The patient is ready to let go but the family is not ready to let go, and they put various degrees of roadblocks to the patient accessing it.”

Dr Jessica Kaan, Medical Director of End of Life Washington, reinforced these claims. She told MPs:

“I would echo those comments. We are trained to assess capacity in big ways and small ways, throughout our medical training. 

‘Virtually all of the time it is the opposite way around, where the family are trying to coerce or convince someone not to make this choice… I have also never come across a case where I felt a patient was being coerced into this decision by a family member.”

Claire Macdonald, Director of My Death, My Decision says:

“It was very reassuring to hear from the American doctors who work extensively on assisted dying that the work they do is rewarding – and that they have no concerns over coercion. They also stressed that doctors should freely be able to discuss assisted dying with patients and their families”.

What’s Next:

This was the second oral evidence session of the day. These evidence sessions will continue throughout Wednesday and Thursday, then followed by line-by-line scrutiny of the Bill, where a committee of MPs will look at the details and suggest changes. 

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 reaching 330 votes to 275. 

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.

 

 

Today, the Committee which is examining the Terminally Ill Adults Bill, heard evidence from a range of experts.

Here’s our summary of the session:

Session 1:

• Sir Chris Whitty, Chief Medical Officer
• Duncan Burton, Chief Nursing Officer

Sir Chris Whitty, the Chief Medical Officer for England, told the Committee examining assisted dying legislation that “It’s important that the wishes of the patient must be respected, we must think about the wishes of someone in the last six months of their life and their family”.

“The central people here is a person, an average citizen in the last 6 months of their life. What we don’t want is a system that is very difficult for them to navigate so they spend the entire last 6 months of their life, if this bill is passed and they choose to take account of it, essentially stuck in a bureaucratic thicket.

We do need to keep this simple. My view is that the best safeguards are simple safeguards. Overcomplicating actually usually makes a safeguard less certain.”

Whitty highlighted that many of the issues that clinicians will face in this Bill would already be standard training and guidance practices. He said: “It’s a normal part of medical practice to consider issues of consent and mental capacity, and that can include refusing treatment”

Duncan Burton, the Chief Nursing Officer, told the committee: “All of our nursing staff, clinical staff have safeguarding training, that already looks at things like financial coercion or other forms of abuse so that training is already in place and is extensive across social care.”

Chris Whitty told committee members to stick with the Mental Capacity Act when it comes to checking capacity for assisted dying, explaining that it is a normal part of medical practice to consider issues of consent and mental capacity.

Session 2: 

• Dr Andrew Green, Chair, BMA Medical Ethics Committee
• Mark Swindells, Assistant Director at the General Medical Council

Dr Andrew Green, Chair was asked if doctors should be prohibited from talking about assisted dying to their patients. He replied: “Please do not pass legislation that makes it harder for doctors to understand their patients.”

He also raised that the training and experience of a doctor was more important than explicitly outlining in the law how many years of practice they must have. 

The Committee spoke at length about conscientious objection, allowing doctors to opt out of participating in assisted dying. Committee members and experts pointed to abortion legislation, which has some similarities. Mark Swindells told the committee: “In the case of conscientious objection, it’s important to take the patient’s perspective that they aren’t left with nowhere to go.”

Session 3:

• Glyn Berry Co-Chair at Association of Palliative Care Social Workers
• Professor Nicola Ranger, Royal College of Nursing, Chief Executive and General Secretary.

When asked by Dr Marie Tidball MP: “You would believe that your members would be able to pick up & identify issues like coercion?”, Professor Nicola Ranger said: “I do. They’re professional and I believe they would.”. She told the committee:

“Recognising abuse is the responsibility of every nurse now… It’s a good and simple process. You don’t have to investigate yourself, you have to refer to be investigated. Our job is to be vigilant.”

Professor Nicola said the role of a nurse is to listen and advocate for the patient: 

“It’s really listening to what people have to say, having a way to ensure that what an individual wants is something you listen to. I absolutely agree with all the points around safeguards, about all of those things. The whole point of assisted dying is not to be paternalistic, but to respect autonomy, whatever safeguards we ever put in with that we have to be really careful not to ignore that right to autonomy, which is primarily what we are trying to do with this bill.”

Glyn Berry advocated a multi-disciplinary approach: 

 “Our expertise and strength is being able to ask difficult questions, and really dig into people’s thoughts, feelings and opinions and giving them the opportunity to say things they would have never said in their whole lifetime”

Claire Macdonald, Director of My Death, My Decision says:

“From the evidence given today, it’s clear that the Terminally Ill Adults Bill is workable with current legislation like the Mental Capacity Act and that there’s already extensive guidance and training around safeguarding issues.

It’s also vital that the system takes into account that the person going through it has only a few months to live and should not face “a bureaucratic thicket” as the Chief Medical Officer put it.  We must keep things simple.

We are glad that MPs are listening closely to the evidence and the experts, and we hope this Bill will pass its subsequent stages through further respectful and essential debate.”

What’s Next:

This was the first oral evidence session, which will take place over three days and examine nearly 50 witnesses. The sessions will be followed by line-by-line scrutiny of the Bill, where a committee of MPs will look at the details and suggest changes. 

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 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.

MPs have voted in favour of assisted dying by 55 votes. This is a historic step and finally puts parliament in line with public opinion. After years of campaigning, My Death, My Decision welcomes this long overdue result and looks forward to supporting the Bill through its next stages.

The result of the vote at the 2nd Reading of the Terminally Ill Adults (End of Life) Bill was:

330 in favour, 

275 against, 

45 abstentions. 

213 more MPs voted in favour compared to the last meaningful vote in 2015, where 117 voted for, 329 against. This number no doubt reflects the continued bravery of countless individuals who have spoken up about this issue over recent weeks, months and years.,

Trevor Moore, Chair of My Death, My Decision says:

“Thousands of people will be heartened by this result. Every day, 20 people in the UK are suffering unbearable pain at the end of their lives despite receiving the best possible care. For them, the choices are stark and harrowing: travel to Switzerland, and end their life by suicide, stop eating or drinking, or face an agonising natural death. These people deserve better. They deserve the dignity of choice at the end of their lives, and we are relieved to see MPs acknowledge this. 

We are glad that MPs listened to the public and the evidence, and we hope this Bill will pass its subsequent stages through further respectful and essential debate.”

Justian Hansen will forever be affected by the memories of his mother’s agonising death from cancer in 2021, at the age of 82. Witnessing her final weeks has solidified Justian’s support for the legalisation of assisted dying. Justian said:

“I would not wish anyone to hold the memory of my mothers’s final week. There was no saving her – no last-second miracle cure – nothing but a slow agonising pain-filled death by starvation. She was fully capable and able and when she could endure no more, she said: ‘Tonight- that’s enough, this pain is too much, let me go.’ I would give anything to have her here today, but I would give everything to have given her what she wanted.”

“I am so relieved to see that politicians have done the right thing today. My dear mother deserved so much more than begging to die. I know it is too late for her, but it isn’t too late for others and this is another step towards dying people being shown compassion. Today is a good day.”

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. This vote is only one step in the passage of this legislation, and the Bill will now go to a Committee Stage 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.

A representative from DIGNITAS has told MPs that assisted dying at the Swiss centre is “safe, peaceful and compassionate” for the people who end their lives there. Silvan Luley, a representative of ‘DIGNITAS – to live with dignity, die with dignity’, spoke to politicians at a closed-room briefing organised by My Death, My Decision.

Speaking about the process of assisted dying, Silvan explained the end-of-life medication used at DIGNITAS is similar to medication used for anaesthetics. The patient falls asleep within seconds or minutes of taking the medication, and often dies within the hour and the process is peaceful.

Silvan said:

“The ‘horror stories’ you may have read in the press recently, with people taking hundreds of pills or people choking, is complete and utter nonsense.”

Clare Turner,  a mum of two from Devon who has stage 4 breast cancer, rescheduled her chemotherapy treatments to talk to MPs. Clare said:

“I want to avoid pain, indignity and suffering, but I’m also aspirational because I want a good death. I want to die being grateful for the miracle of my life. I have an oak tree that sweeps over my garden. I lie under it and watch the owls and the stars. It provides shade for picnics with friends. It’s where I want to die; under the shade of my oak tree. I want to die feeling grateful for the miracle that is life.

I feel a lot of this conversation is fear-based, and that fear leads to so much what-iffery.“

Dr. Martin Scurr, GP, former Medical Director of St John’s Hospice and Daily Mail medical columnist, recounted two stories from his medical past about doctors assisting their patients to have an assisted death. One story involved a Catholic priest asking a doctor to help an elderly nun with a terminal illness to die peacefully. Scurr said that modern medical governance is so strict that this could not happen any more.

He said: 

“Not giving people control at the end of their lives is maleficent and therefore goes against one of the four pillars of medicine. With palliative sedation, the patient is parked in a semi-delirious sleep state, maybe they’re not suffering but you’ve taken away their control.

What about ‘First do no harm’? By not allowing assisted dying you are doing harm!”

Professor Emily Jackson, Professor of Law at the LSE, specialising in medical law, told MPs that the so-called ‘slippery slope’ does not exist. This is a matter for parliament to decide and it’s parliament’s job to legislate. Commenting on the debate so far, 

Emily said:

“The hypothetical suffering of an imaginary person seems to get so much more oxygen and attention than the people who are suffering right now.

‘In the UK, patients with capacity can already make decisions that will result in their death. Patients have the right to refuse life-prolonging treatment. In this circumstance, we already have mechanisms for doctors to decide if patients are under coercion. Why can’t we apply these mechanisms and these judgements in the assisted dying situation? We also already have excellent laws and systems in other situations where coercion needs to be identified. An example would be the protection of reproductive rights.”

Trevor Moore, Chair of My Death, My Decision said:

“We are grateful to the excellent speakers at the briefing, using their considerable professional experience to debunk the misinformation put out by opponents, many of whom disagree with assisted dying for their own personal reasons, but fabricate negative stories as a smokescreen.

Our key message to MPs is that if they reject the Leadbeater Bill they will force many to suffer unnecessarily, because we know that palliative care cannot help many thousands of suffering people. Beyond that, they have choices that are harrowing not only for them, but also for their loved ones. Can you look those people in the eye and tell them you don’t support a compassionate choice that will allow them a calm and dignified death?”

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.

The Isle of Man moved one step closer to a compassionate assisted dying law today, as Dr Alex Allinson’s Assisted Dying Bill passed the clauses stage. My Death, My Decision welcomes this historic move but is disappointed that the Bill won’t give the incurably suffering, who are not necessarily terminally ill, this end-of-life choice.

The House of Keys, the lower house of Tynwald, Isle of Man’s parliament, made several amendments to the Bill published in May.

• People who have been given 12 months left to live by a doctor will be eligible, rather than six months 
• Patients must be a resident of the Isle of Man for a minimum of five years, rather than one year. 
• Attempts to severely limit access for eligible patients and to remove the choice from healthcare entirely were defeated. 
• Doctors will not be allowed to administer assisted dying, patients will have to take medication themselves.

There were also several delaying tactics by clear opponents of the Bill. There was a vote to postpone the debate until November, for no apparent reason, 14 votes to 9.

Opponents also produced a last-minute amendment to require a referendum on assisted dying, voted down by 12 to 11. If opponents were sincere about a referendum being required, the motion could have been introduced or even suggested two years ago, when Dr Alex sought leave to introduce the assisted dying bill.

The debate’s earlier session heard an emotional plea against the referendum amendment from Sue Biggerstaff whose late husband Simon suffered a horrific death from motor neurone disease (MND). Simon’s life, as he endured paralysis from the neck down within just two months of his diagnosis, ended in avoidable pain and suffering. 

Mrs Biggerstaff told politicians: “There was a total loss of dignity. He couldn’t speak properly, couldn’t do anything… There were so many horrible, horrible things happening to him. Nobody should have to live through it. It’s just awful. Awful.”

The Bill will soon have its third reading, before moving onto the Legislative Council, the Isle of Man’s upper chamber, for further debate. It could then receive Royal Assent in 2025, followed by consideration of how the law will be implemented. Assisted dying could potentially be available to terminally ill people from 2027.

Trevor Moore, Chair of My Death, My Decision said:

“Today we have seen historic developments as the Isle of Man moves toward a compassionate option for people at the end of their life. We’ve also seen the unfortunate side of politics, with attempts to delay, confuse and distract. Politicians on the Isle of Man should be commended for seeing through this, and supporting the continued progress of Dr Alex Allinson’s Bill – reflecting the overwhelming public support.

At My Death, My Decision we believe that competent adults who are intolerably suffering from incurable conditions  – like locked-in syndrome, or for example paralysed after an accident – deserve the choice of an assisted, dignified death. A more compassionate approach to the assisted dying debate is possible”

Notes

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.

The Terminally Ill Adults (End of Life) Bill has been published and is available here: https://bills.parliament.uk/bills/3774/publications

Although narrower in scope than the law it has campaigned for, My Death, My Decision welcomes the Bill in providing politicians with the opportunity to have a proper debate of the issue. That process will start with the second reading debate in the House of Commons on 29th November. 

If MPs vote in favour it will then be subject to a lengthy process of scrutiny, first by a Commons committee and then by both Houses of Parliament, during which time it can be amended. It will become law only if both chambers support it in further separate votes next year.

Key elements of the Bill are:

• The right to ask for help to die will be limited to people who have six months or fewer left to live;
• Two independent doctors must be satisfied that the person is eligible and must, if necessary, consult a specialist in their condition and receive an assessment from an expert in mental capacity;
• The application then goes before a High Court judge who must hear from at least one of the doctors and may hear from and question the person making the application and anybody else they consider appropriate;
• No doctor will be under any obligation to participate in any part of the process;
• If all the above safeguards and protections are met and the person still wishes to proceed, the medication must be self-administered.

With its six months time criterion the Bill will follow the format adopted by all of the states in the USA and several in Australia that allow assisted dying, and so will exclude most people with conditions like Parkinson’s, Huntington’s and Multiple Sclerosis from having the option of an assisted death. Debate of these cases will no doubt arise as the Bill progresses through the different stages of scrutiny.

Trevor Moore, Chair of My Death, My Decision, said:

“This is a bittersweet moment. On the one hand, the introduction of an assisted dying Bill in the House of Commons is a significant and long-awaited step. We commend Kim Leadbeater MP for putting forward the case for change, and we wholeheartedly support efforts to end the inhumane blanket ban on assisted dying.

Many conditions such as Multiple Sclerosis, Parkinson’s and Motor Neurone Disease can make life intolerable for the sufferer well before they can be described as terminal, or the diagnosis of terminal status may come too late, when the patient has lost mental capacity. My Death, My Decision will make sure that parliamentarians consider these cases as the Bill progresses.”

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.