Assisted Dying Countdown

10 questions* to answer before voting for assisted dying: 1

Committee MPs suggested that feeling like “a burden” could be a “legitimate” reason to ask for an assisted dying but rejected an amendment to rule this out. How common do you think it is for terminally ill people to feel like a burden?

2

If a terminally ill person asks for assisted dying only because they are depressed, the request must be approved. Why would the committee reject an amendment that doctors must check for remediable suicide risk factors?

3

The committee amended the meaning of the NHS’s founding principles to incorporate assisted dying into the NHS. Was this wise despite the BMA’s view that “assisted dying is not a ‘treatment option’ in the conventional sense”?

4

The government said it is open to for-profit private providers as long as it’s free at the point of use. Are you comfortable with Serco or Capita providing this service?

5

Doctors are allowed to raise the subject when the patient hasn’t mentioned it (the committee rejected an amendment to rule this out). Do you have any worries that this will lead vulnerable patients towards assisted dying who otherwise wouldn’t have considered it?

6

Kim repeatedly cites the lawyers’ letter in support of the panel. Do you know why, of the 25 KCs who previously signed a letter supporting her bill with the High Court safeguard, only 11 signed the letter supporting it with the new panels?

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10

Prof Jane Monckton-Smith OBE, a leading authority on coercive control, says: “Unless we do take this incredibly seriously, this bill is going to be the worst thing potentially that we have ever done to domestic abuse victims.” Are you confident the committee has done enough to safeguard domestic abuse victims?

Proponents say the assessors will pick up any coercion. 50% of coercive control cases are dropped for lack of evidence, and only around 5 per cent of recorded coercive control crimes result in a charge. How will the MPs make the doctors’ and panels’ checks on coercion any better than those of the police?

Prof Mark Taubert says those receiving assisted dying drugs have a “substantial risk” of “distressing deaths”, and the anesthesiologist Dr Joel Zivot of Emory University claims: “Assisted suicide is not painless or peaceful or dignified. In fact, in the majority of cases, it is a very painful death.” Why did the committee reject amendments to ensure that the drugs must be approved by the Medicines and Healthcare products Regulatory Agency (MHRA); that the Health Secretary must conclude they do not cause pain; and that applicants must be told about potential complications?

The committee rejected amendments allowing family to know about and contribute to the assessment process. How do you feel about the fact that the first a family might know of a loved one’s assisted dying application is when they are asked to come and pick up the body? *from an original list of 25 by Senior Editor First Things, Dan Hitchens.

9 numbers on assisted dying 85%

of those who initially say they support assisted dying when questioned drop their support in part or in whole when presented with new information. Source

1 in 4 people in the UK who currently do not get the end-of-life care and support they need. Source

5.7 days

the longest time recorded in Oregon between ingesting prescribed lethal drugs and death. Source

35%

only a minority of psychiatrists are confident that consent can act as an adequate safeguard. Source

43%

of palliative care doctors would leave their profession is assisted dying became legal. Source

5 years

how long it took Canada to expand eligibility from only deaths “reasonably foreseeable” to also include those with serious and incurable illnesses.

42%

of assisted dying recipients in Oregon cited “feeling like a burden” as a reason for their decision in 2024. Source

13%

the rise in non-assisted suicide rates for women in countries with legalised assisted dying, noted in the US. Source

1 in 20

the rate of complications in death procedure in Oregon 2024. Source

8 quotes from experts to know about Doctor-patient relationship

“Allowing doctors to suggest assisted dying risks undue influence. Many patients will interpret such suggestions as endorsements, or even futility, undermining trust in healthcare relationships.”

Dr. Matthew Doré, Honorary Secretary of the Association of Palliative Medicine

Health-based discrimination

“We have documented many examples where people… have experienced direct discrimination from healthcare professionals, including one individual who was told by their GP ‘have you got any idea how much you cost the NHS?’” Pathfinders Neuromuscular Alliance

Dangerous ‘details later’ approach

“[The bill] lacks essential details and instead delegates powers to the Health Secretary to make rules and regulations themselves after the Bill becomes law.” ... “Good laws do not follow a ‘details later’ approach. For an issue as serious as assisted dying, MPs must know exactly what they are voting on.”

Liberty

Older people perpetually at risk

“[We are] not confident that effective safeguards can be developed to protect older people from harm”.

British Geriatric Society

Mental Capacity Act not appropriate for this magnitude

“While we are of the view that a person’s capacity to decide treatment [under the Mental Capacity Act 2005] can be reliably assessed, an assessment of a person’s mental capacity to decide to end their own life is an entirely different determination.”

Royal Society of Psychiatrists

Anti-suicide consensus is lost

“If we concede that taking your own life in some circumstances should be not only allowed but assisted, suicide prevention more broadly is undermined.”

Prof Louis Appleby, Government adviser on suicide prevention.

Human dignity undermined

“Hospice UK believes that it would be a profound moral and practical failure for any person in the UK to request an assisted death in the future, because of a real or imagined fear that they would not be able to access pain relief or other essential care.”

Hospice UK

Misconceptions?

“We would therefore caution that we do not know what best practice is, and that the current situation, although effective, may be leaving some patients aware and in potential distress...We cannot simply assume that they are going gently, because they appear so based on the rather blunt tool of an external observer assessment for signs of distress or discomfort.”

Dr. Benjamin Thomas and Dr. Greg Barclay, Palliative Care specialists from New South Wales, Australia.

79% of written evidence submitted to the committee was opposed to assisted dying (296 submissions), vs only 11% being in favour (40 submissions). This stands in stark contrast to experts being invited to give oral evidence appearing overwhelmingly in favour. Many more voices are concerned about this bill than the process has thus far attempted to indicate.

7 stories to know In this debate, we’ve heard heartbreaking accounts and seen coverage from high profile celebrities who want to change the law. The lesser-known voices are what we are bringing forward again today.

7 stories of people who would have missed out on so much had assisted dying been legal historically and their days prematurely ended. People like Heidi, Alison, and Roger, give us invaluable insight into the very real, unintended consequences of that change in the law.

It’s a challenging and inspiring must read, and it’s one click away: https://issuu.com/care/docs/leadbeater_bill_leaflet

6 takeaways from the impact assessment 1

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4

There are no details of how the service would work because these are going to be set through secondary legislation (page 8) and could involve registered health and care providers in the private sector (non-NHS) delivering VAD services (para 381, page 108).

There will be a shifting of resources within the health and care system but there is no analysis of the impact of doing so (para 388, page 109; also para 105, page 40 and para 223, page 69). The BMA has said “If a service for assisted dying is established, it is vital that it receives adequate and new funding without causing detriment to any existing NHS care.”

It does not address resolving the unmet need for palliative care. Hospice UK has said “Given the existing financial pressures experienced by many palliative care providers… it would feel unconscionable for funding for an assisted death to be fully met by the state, while other core and specialist palliative care services remained paid for by an ad hoc and increasingly inadequate combination of charitable gifts, hospice shops and statutory funding.”

Concerns about a person feeling a burden are highlighted by the statement that “one of the reported benefits of VAD services to unpaid carers is the reduction in time spent providing care for the terminally ill adult who chooses to end their own life. Evidence suggests that providing unpaid care, particularly at higher intensities, is associated with negative physical and mental health outcomes and employment impacts.” (para 98, page 37).

5

Most healthcare policies are evaluated in terms of Quality-Adjusted Life Years (QALYs), but “QALYS are not designed to quantify the health impacts of choosing to end life” so are not used in the IA (para 50-51, page 18 and para 92, page 36).

6

The costs are uncertain “given there are significant aspects of the Bill that have not been possible to quantify at this stage” (page 3).

Whilst the costs may be uncertain, we know that it will ultimately be cheaper to pursue assisted dying, than to provide care in an ageing society. Previously, we shared a quote with you from Pathfinders Neuromuscular Alliance where a disabled individual being looked after in a hospital was told by a doctor ‘have you got any idea how much you cost the NHS?’.

In reading the assessment, it was painful to see people as little more than numbers on a spreadsheet, and chilling to see their lives - and deaths - represented as savings.

5 takeaways from the equalities assessment It admits risks to the most vulnerable, but simply assumes the safeguards will offer sufficient protection, without any critical analysis of their efficacy. In so doing, it takes a Canadian approach by majoring on reducing “barriers” to access instead of preventing harms, and the potential underrepresentation of vulnerable people, rather than being concerned with their over-representation.

Echoes the fears of disability campaigners: “Evidence suggests that disabled people may be more susceptible to feeling as though they are a burden on those around them. Pressure is not necessarily felt or applied by other people—disabled people may feel subtle pressure due to attitudinal barriers or a lack of alternative appropriate services and support (for example, when accessing palliative care).” (page 8) Low-income patients left vulnerable: The assessment identifies that “Poverty is an important factor in health inequalities” (page 17), and that “The Equality and Human Rights Commission notes that regional variation in palliative care could be a reason for some patients to consider assisted dying” (page 18). Yet, the assessment offers zero critical engagement with this very significant reality.

In an unlikely and macabre admission, “a pregnant person who also meets the eligibility criteria in the bill, would not be explicitly excluded from seeking assistance to end their own life” (page 15) Nothing about wider suicide prevention. No reference was made to the impact of this bill on broader suicide rates, which is a shocking omission when one considers the inputs from the government’s chief advisor on suicide prevention, Professor Louis Appleby, that this bill will put the suicide prevention consensus at risk.

Concern for domestic violence victims: The report recognises that those with a disability and women can be subject to higher rates of domestic abuse (pages 8 and 12) but that “Evidence suggests that healthcare professionals lack ‘training and education’ regarding domestic abuse and may be ‘unwilling to engage in conversations about domestic abuse’” (page 12).

4 essential safeguards that remain missing •

Burden – You can access an assisted death under this bill because you feel like a burden on others. If we’re anything like Oregon (whom supporters of the bill regularly cite) - then we can expect 42% of patients to cite this as a reason. In response to this issue, one committee MP asserted that it would be “policing the conversation”, “insensitive”, and “none of your business” to seek to understand why somebody might opt for an assisted death.

•

Prognosis – Doctors do not need to meet any standard of proof that the patient has less than 6 months to live. Studies show that 6-month prognosis accuracy can be as low as 23%. Heidi Loughlin was told she had 12 months to live when diagnosed with breast-cancer... that was in 2015, and she continues to enjoy life today.

•

Coercion – The new panels are only required to find a lack of coercion on “balance of probabilities”, rather than “beyond reasonable doubt” (which is the normal legal standard). What’s more, the committee voted against an amendment which would require doctors to check whether or not someone is being “encouraged” to end their life, which was an amendment endorsed by the former Attorney General, Victoria Prentis (col 431).

•

Mental Capacity – There remain high levels of doubt over whether or not the Mental Capacity Act 2005 is fit for the purposes of the bill by professionals in the field. Furthermore, there is no requirement to check for remediable suicide risk factors in the patient, nor does the patient need to meet with a mental health specialist.

This is no ordinary legislation. We are talking about life and death - the stakes are simply too high.

Decisions made are fatal and final, and vulnerable people will assuredly end up getting through any safety net.

3 assurances worth reconsidering Are you considering voting for a change in the law and the constitution of the NHS? If so, is that because you believe that the bill represents a safe, compassionate, and regulated new reality that bill supporters describe?

As you deliberate, please consider the following 3 assurances made about the proposed change that ultimately won’t withstand the test of time:

“Where assisted dying is legal the evidence shows the law is safe and effective.”

It actually creates new risks and increases danger.

•

Evidence from other jurisdictions indicates a risk of increases in non-assisted suicides, particularly amongst women.

•

Women’s Aid state that the bill “lacks effective safeguarding of domestic abuse survivors and fear that survivors may be coerced by their perpetrator into ending their own life”

•

The Impact Assessment says “the safety and efficacy of those substances used for assisted dying is currently difficult to assess.” (para 111). Another article said at death we “…may be leaving some patients aware and in potential distress.”

“Law change would also introduce protection and oversight where none currently exists.”

Law change would in fact remove protections from vulnerable individuals who currently do not need to justify the care they receive from the state, family and friends, but who are likely to feel pressure to choose assistance if this becomes law.

“Not one jurisdiction that has passed laws on the basis of terminal illness has expanded its scope.”

The Health Committee in Scotland reviewing the similar bill there said, “there may be a risk of the Bill being subject to human rights or other court challenges and that this could result in eligibility for assisted dying being extended over time.” (para 123) Indeed, we find that: •

Canada took 5 years to expand their law from death being ‘reasonably foreseeable’ to include nonterminal illness, and in 2027 is scheduled to expand again to mental health illness.

•

The Netherlands law, in 2023 was expanded to include children of all ages. There are currently attempts to extend their law to anyone over 74 who considers their life “complete”.

•

In Oregon, conditions that have been accepted as falling within the definition of terminal illness have included: anorexia, arthritis, complications from a fall, hernia, and medical care complications.

Not all change is good change.

2 must-read headlines 2 significant headlines arrived overnight 2 days before Friday’s debate., here’s what they said:

The RCPsych cannot support the Terminally Ill Adults (End of Life) Bill for England and Wales in its current form “With too many unanswered questions about the safeguarding of people with mental illness, the College has concluded that it cannot support the Bill in its current form.”

The Royal College of Psychiatrists listed NINE reasons underpinning their conclusion, including that the Mental Capacity Act 2005 does not provide a framework for assessing decisions about ending one’s own life (meaning, it is unfit for the purposes of the bill).

GPs split over assisted dying plans, BBC research suggests “More than 1,000 GPs replied, with about 500 telling us they were against an assisted dying law and about 400 saying they were in favour.”

Leading the BBC’s news page this morning was evidence of considerable concerns from GPs. The main reasons for doubt amongst opposed GPs were concerns over patients feeling like a burden (9 in 10), and coercion (8 in 10).

Also in the press, you may have seen last night that the Commission on Palliative and End of Life Care released Volume 1 of their findings for England, which stated that: Access to palliative care is a postcode lottery and requires “urgent action” (page 12).

Numerous reforms are needed to funding, delivery, training, and much more. “A better and fairer long-term funding model is required nationally.” (page 43)

1 final ask The last 10 days we’ve sent insights to help determine if this bill is safe for your constituents.

From expert witnesses to the Impact & Equalities Assessments, the essentials are all here.

Some amendments on Friday may suggest greater protections but one major issue stands apart can ‘feeling a burden’ ever been legislated away?

If you have the smallest doubt or concern, please don’t see this bill carried forward.