Return of assisted dying bill with co-sponsor Marie Tidball MP

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Jun 172026
 
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Statement for Press – return of assisted dying bill co-sponsorship by Marie Tidball MP

From Disabled People Against Cuts

FOR IMMEDIATE RELEASE

17.06.26

Lauren Edwards, MP for Rochester and Strood, has announced her intention to uphold Parliamentary democracy through returning the Terminally Ill Adults (End of Life) private member’s bill to Parliament, claiming the House of Lords blocked the will of the Commons in failing to pass the bill earlier this year.

Disabled People Against Cuts [DPAC] joins Deaf and Disabled People’s Organisations [DDPOs] across the UK in fearing this move.

She has stated her plan not to allow the Commons to amend the bill this time around.

The bill’s previous passage through the Commons was beset with multiple breaches of democratic principle, none of which she has any plans to address.

These breaches prevented Deaf and Disabled people including those with terminal illness and our representative organisations from having our concerns heard over the content and quality of the bill as well as the process by which it was passing until it reached the House of Lords.

Our concerns were not motivated by an opposition to the principle of assisted dying nor by any lack of ability to understand the bill nor by mistaken beliefs that the bill would impact us, as supporters of the bill regularly claimed.

There are many ways in which the bill would impact Deaf and Disabled people – not least because many of us are Disabled by terminal conditions and also because Deaf and Disabled people die from terminal conditions too – in fact we are statistically more likely to die earlier and from preventable illness.

Legislation dealing with terminal illness therefore has an arguably even greater significance to us than to non-Disabled people.

We are extremely anxious – indeed distressed – at the prospect of another attempt to legalise assisted suicide via Private Member’s Bill and in particular via the same seriously flawed attempt at legislation as before.

We are not at all reassured by co-sponsorship of the bill with Marie Tidball MP, herself an openly Disabled member of Parliament.

We see this as nothing short of a cynical attempt to gas light DDPOs and terminally ill people with concerns about legislation.

This is the same role played by Tidball in the passage of the previous bill when her involvement in the Commons’ public bill committee served to block amendments that would have provided greater safeguards.

Opposition to the bill in the House of Lords was primarily motivated by the fact that the bill itself is not fit for purpose. In its current form it will undoubtedly serve to remove choice and control from terminally ill people and shorten the lengths of time that they are able to live from the point of diagnosis.

Terminally ill people cited by bill proponents and featured in the media who voice support for legalisation only ever comment on the principle of assisted dying and never on the specific concerns with the content of the bill which DDPOs and professional bodies have raised.

Using their voices to discredit the voices of DDPOs and concerned individual terminally ill people is another example of the gas lighting we have endured.

If Lauren Edwards MP had a genuine concern for democracy and had even the vaguest interest in Parliamentarians appropriately fulfilling their responsibilities as legislators and duties of scrutiny, she would not be attempting to bring in such a monumental legislative change via a process that is unfit for this purpose, she would instead be looking to legislate for provision of a Royal Commission into the issue.

 

For more information contact:

Disabled People Against Cuts – mail@dpac.uk.net

Ellen Clifford – 07505 144371

 

END

 

Notes for Editor

  1. Disabled People Against Cuts is a UK-wide grassroots campaign group set up to oppose the brutal and disproportionate impact of austerity and welfare reform on Deaf and Disabled people. The context of continuing cuts and regression of our rights is directly relevant to the level of threat which the Terminally Ill Adult (End of Life) poses to our lives.
  2. There is not a single Deaf and Disabled People’s Organisation [DDPO]across the whole of the UK who supports the TIA bill. DDPOs are organisations run and controlled by Deaf and Disabled people.
  3. Below is a list of democratic failures of previous bill which we call on Lauren Edwards MP to remedy with the new bill. Although these are not legal requirements for a private member’s bill, the magnitude of the legislative change that such a bill would require makes these essential in order to avoid breaching the human rights of Deaf and Disabled people. The role of a Disabled MP as co-sponsor is not an adequate substitute for provision of the below.
      • Timescales need to be much longer at ALL stages of the bill. For example, the first draft of the TIA bill was produced less than three weeks in advance of the second reading debate. This was not only inadequate for MPs but also prevented DDPOs and Deaf and Disabled people with terminal conditions from accessing the draft with time to lobby their constituent MPs with any concerns.
      • Bill materials including draft text of the bill itself to be available in accessible formats including easy read and BSL.
      • Impact assessments including equality impact assessment to be published at the outset including in accessible formats. EIA to be fit for purpose and actually address potential adverse impacts on all equalities groups rather than just focusing on ensuring good access to the assisted dying service. Timely publication to allow for DDPOs to raise any problems with the quality of the EIA.
      • Call for written evidence to be available in accessible formats and to be publicly announced with targeted outreach to DDPOs.
      • Targeted outreach by the bill sponsor to hear the voices of people with terminal conditions within scope of the bill who have concerns about the bill.
      • Assurance of no messaging to MPs or the media that the bill does not affect/is not relevant to Deaf and Disabled people to discourage consideration of our views and concerns.

4. Issues which the majority of terminally ill people cited by politicians and featured in media have not seemed to be aware of: Big savings to health and social care budgets associated with introduction of a new voluntary assisted dying service as included in the bill impact assessment.

  • The reasons why the vast majority of palliative care professionals are opposed to legalisation including the threat it poses to investment in palliative care services, especially within the context of inadequate investment in and ongoing cuts to palliative care services and how the combined impact will be to reduce choice for terminally ill people in a far more substantial way than legalisation will increase it.

 

  • The fact that, according to experienced palliative care consultants, only a tiny proportion of terminally ill patients need to die in pain. Stories of individuals dying in pain put forward by supporters of the bill are, in the most case, situations that could have been avoided by access to adequate palliative care early enough. Supporters of the bill openly acknowledge that legalisation will inevitably mean wrongful deaths. We would ask how many members of the public would want assisted dying rather than palliative care for a loved one if pain were not an issue when the latter would mean longer with them?

 

  • Safety issues with the drugs currently used for assisted suicide in other jurisdictions and occurrences/risk of unpleasant and/or prolonged deaths.

 

  • Resistance by bill supporters to safeguard against people with terminal conditions choosing to end their lives not because they want to but because of: financial considerations of others; inadequate social care support; coercion by overstretched carers; quality of life judgements by medical professionals [amendments on all of which were voted down].

 

  • Lack of provision for identification of changes to a terminally ill person’s life able to alter their wish to end their life prematurely, for example through access to counselling, palliative care, social care or peer support.

 

  • Legal loophole passed in the Commons regarding promotional advertising of assisted dying.

 

  • Range of vested market interests in legalisation of assisted dying.

 

  • Implications for those with anorexia who are covered via a loophole in the bill.

 

  • Significant professional opinion that the mental capacity test used in the bill is inappropriate and fails to provide sufficient protections within the context of the bill.

 

  • Concerns raised by the Equality and Human Rights Commission as well as disability groups and organisations throughout passage of the bill, none of which were adequately addressed and most of which were dismissed out of hand by supporters of the bill. In addition to DDPOs, concerns were raised by groups and organisations representing, for example, people with anorexia, people with Down’s Syndrome, Mencap, and domestic abuse survivors.

 

  • Terrible inadequacy of the bill Equality Impact Assessment not only with respect to disability issues but also with regards to potential adverse implications for women experiencing domestic abuse and people from radicalised minorities.

 

  • Unwillingness by bill supporters to learn from the experiences of people with terminal illness/Deaf and Disabled people to improve the bill, for example the statistically evidenced role of fear over reality for new diagnoses and ways to alleviate that fear without recourse to premature ending of one’s life.

 

  • Implications for Deaf and Disabled people in Scotland and Northern Ireland due to interesting legislation, for example where Westminster has power over NHS provision of expensive life-saving treatment drugs to which Disabled campaigners have to fight for access.

 

  • The fact that data and research from jurisdictions where assisted suicide or euthanasia and assisted suicide are legalised (both are distinct forms of assisted dying) is severely limited but in every one, the original eligibility criteria for legalisation has widened.

 

  • The impact of legalisation on overall suicide rates. Evidence from other jurisdictions shows that the rate of overall non-assisted suicides does not reduce when assisted suicide is legalised but instead indicates that this rate increases. This is due to the normalising impact it has on suicide within wider society and because most suicides of terminally ill people occur straight after diagnosis rather than closer to death within a timeframe that comes within scope of legislation. This is an especially important concern for legalisation within the current UK context given the ongoing and only worsening crisis in mental health services. It is also a concern voiced by the UK Suicide Prevention Tsar, Professor Louis Appleby, and again disregarded by supporters of the bill.

BRIEFING PAPER: Terminally Ill Adults (End of Life) Bill

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Jun 192025
 
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The UK Deaf and Disabled People’s Monitoring Coalition is a secular network of user-led Deaf and Disabled People’s Organisations across the United Kingdom.

This paper sets out the reasons why we are not able to support the Terminally Ill Adults (End of Life) Bill following the Report Stage.

Many of our concerns echo those voiced by the Royal College of Psychiatrists[1], Royal College of Physicians[2] and Association of Palliative Medicine[3].

We do not believe the Bill has received sufficient scrutiny for legislation that will so fundamentally impact the relationship between doctor and patient.

For the Abortion Act there were months of engagement prior to introducing the Bill, and for the Human Fertilisation and Embryology Act there was the Warnock Commission[4].

For this Bill there has been no direct consultation with marginalised groups and the speed and inaccessibility of the passage of the Bill has been a barrier to engagement.

The Equalities Impact Assessment is frighteningly lacking and there has been insufficient consideration of adverse equalities impacts in jurisdictions where it is legal.

For example, a lawsuit is being brought against California’s End of Life Option Act[5] on the grounds that it puts disabled people at greater risk of being coerced into seeking assisted suicide.

At the same time, the opinions of professionals with the most relevant expertise have been largely ignored.

Below we set out our key concerns with the Bill as it now stands, a list of the amendments we supported which would have improved safeguards but which were voted down and a list of amendments that have been held up as safeguards but which fail to allay our fears.

This paper concludes with our recommendations for MPs.

KEY CONCERNS

No guaranteed access to palliative care. The Bill places a duty on the Secretary of State to guarantee access to assisted dying but not to palliative care. Where deaths in pain do occur, the person has not accessed specialist palliative care or accessed it too late or for too short a time. One in four people who need palliative care do not get it. Palliative care provision across the country is patchy and facing cuts with hospice care under-funded[6].

No emphasis on suicide prevention. This is one key reason why the Royal College of Psychiatrists are against this Bill. Suicidal ideation and hopelessness are treatable including for people with terminal illness. There is no mandatory psychological assessment as part of the application process and people who both meet the eligibility criteria for the Bill and have mental health diagnoses are not excluded.

Inaccurate prognoses. People who are terminally ill with six-month prognoses may have many months and even years left to live[7]. According to figures from the Department for Work and Pensions, one in five benefit claimants given less than 6 months to live are still alive three years later[8]. This makes it less inevitable that people with terminal illness should want to end their lives.

Inappropriate use of Mental Capacity Act as a safeguard. The MCA was not designed for this purpose and has a presumption of capacity. It is possible to be assessed under the MCA as having capacity and yet having impaired judgement due to for example, depression, malnutrition or coercive control. Doctors will be trained in coercive control but psychiatrists and other professionals report how difficult this is to detect even with many years of experience.

Insufficient provision for keeping people alive. Changes to a person’s circumstances can change their wish to die. The place for a multi-disciplinary team assessment is at the very beginning of the process with the aim of identifying options to improve the person’s situation. Instead, the Bill has a multi-disciplinary panel at the end of the process rubber-stamping applications for assisted dying with no requirement to meet the person.  There is no requirement for a doctor to consult a specialist in the patient’s condition or for the patient to have a meeting with a palliative care specialist. Patients will be able to access assisted dying more quickly and easily than social care, mental health support or suitable housing[9].

No requirement to include family members. Evidence from jurisdictions where assisted dying is legal demonstrates how traumatic it can be for family members to lose their loved ones in this way, especially if they do not find out until after and especially if their loved one made their decision when experiencing impaired judgement. There is no right to appeal assisted dying decisions for family members.

Safety concerns about assisted dying drugs. Death by assisted suicide can be very unpleasant. The patient needs to swallow a large number of pills which the body may reject resulting in vomiting. The drugs used are the same as used for death row prisoners and have been linked to, for example, experiences of dry drowning[10]. The Bill Impact Assessment says the “safety and efficacy” of substances used for assisted dying is “currently difficult to assess”[11].

Fear that assisted dying will replace access to services for terminally ill and disabled people wanting to live. The Impact Assessment shows savings that will be made to both health and social care budgets through this Bill. This has increased concerns that the choice to live will be removed for those of us who cost more in support. One care home group finance manager messaged colleagues about savings they could realise through “aggressive promotion” of assisted dying as an option for residents. The voting down of an amendment to limit advertising of the assisted dying service alongside costs in the impact assessment for an NHS education campaign is concerning.

Insufficient attention to equalities impacts. The Equality Impact Assessment accompanying the Bill was not published until after Committee Stage and is unfit for purpose. It concentrates on equal access to the assisted dying service and omits many key risks in terms of adverse inequalities impacts, ignoring data on for example low levels of awareness and access to palliative care services by racialised minorities and those facing socio-economic disadvantage.

Increasing non-assisted suicide rate. There is no evidence that legalisation of assisted dying reduces non-assisted suicides. Research on the contrary shows a rise in the overall suicide rate even after accounting for those deaths by assisted dying[12]. This is likely due to suicide contagion. This risk needs to be understood within the current UK context of escalating levels of mental distress and already increasing suicide rates[13]. There has been no discussion of this or proposal of measures to mitigate this risk.

Too great a reliance on Henry VIII powers. A worrying amount in the Bill delegates powers to Ministers to make secondary legislation without full Parliamentary scrutiny. This is even more concerning for a Bill that will prompt the founding Act of the NHS to be opened up. Deaf and Disabled people are disproportionately reliant on the NHS and potentially at significant risk from this Bill. This aspect of the Bill is therefore of great concern to us.

PROPOSED SAFEGUARDING CONCERNS THAT WERE VOTED DOWN

To close the anorexia loophole. The Bill gives eligibility to people where the physical condition that meets the criteria is either the result of a mental health condition or of Voluntary Stopping Eating and Drinking. This is a huge concern within the context of a mental health system unable to cope with demand where young women with severe and enduring eating disorders are routinely labelled as “hopeless cases” and transferred onto palliative instead of receiving the support they need to live. In other jurisdictions Voluntary Stopping Eating and Drinking (VSED) is used by people who don’t otherwise meet the eligibility criteria to gain access to assisted dying[14][15].

To exclude from eligibility people with who are homeless and prisoners. Disabled people are over-represented among both, as are self-harm and suicidal ideation. Homelessness and conditions in prisons are growing problems. These amendments would have protected against people choosing assisted dying because of adverse external factors rather than the “clear, settled and informed wish to die” that is part of the eligibility criteria within the Bill.

Doctors to ensure that there are no remediable suicide risk factors before proceeding to the initial discussion about assisted dying and for psychosocial assessments to be conducted at the start of the process. These amendments would have provided a safeguard against people with impaired judgement seeking assisted dying due to a mental health condition and/or suicidal ideation.

To exclude from eligibility those seeking assisted dying for the benefit of others. This could include financial concerns. This amendment would have been an important safeguard against coercion.

To exclude from eligibility those seeking assisted dying because they feel like a burden. This is particularly relevant within the context of inadequate social care support services so that family members and friends experience greater strain. Around one half of those seeking assisted dying in Oregon consistently cite being a burden as a primary reason compared to one third concerned about pain[16].

To replace use of the Mental Capacity Act to assess capacity to make a “clear, settled and informed wish to die” with a new ability test to assess ability to make a clear, settled and informed wish to die free from impaired judgement.

For doctors not to be able to raise assisted dying with patients unless they mention it first. This is a major concern for disabled people due to the prevalence of negative medical attitudes towards disabled people’s quality of life and the risk of medical coercion. This risk is evidenced by experiences during COVID when Do Not Resuscitate orders were unlawfully placed on the medical notes of disabled people without their consent[17] as well as a weight of evidence concerning discrimination and medical negligence within the health system. An amendment not to permit doctors to raise assisted dying with children was voted down at Committee Stage but accepted at Report Stage.

To prevent doctors from raising assisted dying as an option with people with learning disabilities and people who are autistic. Instead, Clause 20 provides access to independent advocates for people in this situation.

Inclusion of a 28-day period between a terminal diagnosis and the start of the assisted suicide process. This is important because fear and depression are common responses to terminal diagnoses. Practitioners in other jurisdictions told the Committee at oral evidence how giving patients the option of assisted dying when first diagnosed calms their fears and that many never end up taking the drugs because their fears over pain never materialise. As proven by the lived experience of our members, the same can be achieved by better support accompanying diagnosis, including, crucially, peer support.

AMENDMENTS THAT FAIL TO ALLAY CONCERNS

Training for doctors in coercive control.

According to professional opinions shared with the Committee, it is very difficult even for those with many years of experience to detect coercive control.

Much stronger safeguards would have involved making psychological assessments mandatory as part of the application process and excluding from eligibility those feeling a burden and those acting for the benefit of others.

Provision of independent advocates for “qualifying persons” including “those with learning disabilities, mental disorders, autism or other ‘substantial difficulties’ in understanding processes or information”.

The focus of this clause is on access to information rather than protection from coercion. As a safeguard it is limited in that those willing to act as independent advocates will likely be in favour of assisted dying and may therefore have a bias towards ensuring access to the service that clouds their alertness from detecting coercion.

It is unclear from where the independent advocates for this role will be sourced.

New multi-disciplinary panel including a psychiatrist and social worker.

This will replace the role of the High Court Judge in rubber stamping approvals at the end of the application process and with no requirement to meet the person or involve their family.

The proper place for this panel is at the beginning of the process.

Multi-disciplinary team involvement is good practice when needing to identify holistic solutions for improving a person’s situation.

The role of the multi-disciplinary panel as prescribed by the bill represents a mis-use of MDT involvement. It will not enable the psychiatrist or social worker to utilise their expertise.

Professionals willing to be on these panels will likely be in favour of assisted dying and may therefore have a bias that limits their ability to detect coercion.

It is also unclear how these panels will be resourced given shortages within both psychiatry and social work.

RECOMMENDATION

We urge MPs to vote against this Bill at third reading. A Private Members Bill is not the way to legislate on such a complex issue and one that puts large groups of the most disadvantaged members of society at significant risk for the benefit of a small minority. A Royal Commission where objective scrutiny can take place and that hears equally from all sides of the debate is needed. Due to insufficient transparency in jurisdictions where assisted dying is legal there is a dearth of evidence. Attempts to remedy this and to plug research gaps must also happen.

[1] https://www.rcpsych.ac.uk/news-and-features/latest-news/detail/2025/05/13/the-rcpsych-cannot-support-the-terminally-ill-adults-(end-of-life)-bill-for-england-and-wales-in-its-current-form

[2] https://www.rcp.ac.uk/policy-and-campaigns/policy-documents/rcp-position-statement-on-the-terminally-ill-adults-end-of-life-bill-9th-may-2025/

[3] https://apmonline.org/wp-content/uploads/APM-Position-Statement-on-Assisted-Dying-October-2024-v2.pdf

[4] https://www.hfea.gov.uk/media/2608/warnock-report-of-the-committee-of-inquiry-into-human-fertilisation-and-embryology-1984.pdf

[5] https://californiahealthline.org/news/article/california-physician-assisted-death-disability-rights-lawsuit/

[6] https://www.mariecurie.org.uk/globalassets/media/documents/policy/marie-curie-parliamentary-briefing-better-end-of-life-2024.pdf

[7] https://www.mariecurie.org.uk/media/press-releases/doctors-frequently-inaccurate-when-predicting-survival-for-terminal-illnesses/144959

[8] https://www.telegraph.co.uk/news/2025/01/21/assisted-dying-row-terminally-ill-patients-live-longer/

[9] https://www.independent.co.uk/news/world/americas/canada-euthansia-maid-gofundme-homeless-b2228890.html

[10] https://www.bmj.com/content/372/bmj.n147/rr-0

[11] https://pmc.ncbi.nlm.nih.gov/articles/PMC9270985/

[12] https://www.bmj.com/content/377/bmj.o1014/rr-7

[13] https://www.samaritans.org/scotland/about-samaritans/research-policy/suicide-facts-and-figures/latest-suicide-data/

[14] https://www.newstatesman.com/comment/2025/06/the-loophole-in-the-assisted-dying-bill-that-no-one-wants-to-talk-about

[15] https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2024.1431771/full

[16] https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year19.pdf

[17] https://www.bbc.co.uk/news/articles/cd98vpxgp7ko

Assisted Dying Bill: DDPOs welcome last minute U-turn but criticise inadequate scrutiny process

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Jan 282025
 
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The Committee overseeing evidence gathering on the Terminally Ill Adults (End of Life) Bill has given in to pressure to include a Deaf and Disabled People’s Organisation (DDPO) on their list of witnesses giving oral evidence this week.

The UK Deaf and Disabled People’s Monitoring Coalition welcomes the decision to include Disability Rights UK (DR UK), but believes the move has come too late in a process that has been inaccessible and dismissive of Deaf and Disabled people’s concerns.

Ellen Clifford, UK Coalition co-ordinator said, “It’s good news that the Committee will be able to hear the perspective from organisations run and controlled by Deaf and Disabled people. Our organisations have expertise in a number of the very complex and difficult issues at the heart of this bill.

“These are key issues that MPs need to understand before they can be expected to vote in an informed way, for example the lack of any clear line between terminal illness and disability, the difficulties that even very
experienced professionals have in detecting coercion, issues about capacity and so on.

“It is vital that the Committee does not look at legalisation of assisted dying as an abstract question but fully considers the range of evidence that could be at their disposal about the workability of the bill and its implications.

“We are disappointed with the Committee’s decision not to hear from any organisations with frontline experience of working with victims of domestic abuse given the importance of ensuring the bill has rigorous safeguards.”

Disability Rights UK is a DDPO that advocates for 350 organisations and is an active
member of the Coalition.

Kamran Mallick, Chief Executive of DR UK, said: “It’s welcome that the Committee has revised its decision and now included DDPOs within the list of witnesses giving oral evidence over the next few days.

“No DDPO in the UK is in favour of Assisted Suicide. That isn’t some dogmatic, entrenched position. Disability Rights UK only recently changed our position from neutral to against. This is on the basis of Deaf and Disabled
people’s lived experiences backed up by robust evidence and expertise in disability issues.”

One such example is that of Kevin Caulfield who in his early thirties was diagnosed with a ‘terminal’ HIV-related neurological condition with a prognosis of less than 6 months to live. He was in a desperate situation both physically and mentally.

He freely admits he was so desperate he may well have jumped at the opportunity of ‘assisted dying’, meeting all the criteria of the proposed Bill, but 27 years later he is still here.

Sharing his story, Kevin Caulfield said, “At the time I was desperate and may well have jumped at the chance of the choice of “assisted suicide”. But it would have been a very loaded choice, not a choice at all in my opinion.

“Why? Because I was scared, I felt I had no control, losing functions by the day or enough relevant support. Assisted dying would have given me a focus when what I needed was more time with loved ones and frank conversations
about how to deal better with multiple symptoms.

“That’s why it’s so critical to listen to and take seriously Disabled people with relevant experience. Morally that is the right thing to but that takes time and resources to really involve us in accessible ways.

“Anyone with a terminal diagnosis is a Disabled person in law and yet we are not as Disabled people being treated with equity in this rapid process. It’s important that Parliament does really engage with Disabled Peoples
Organisations otherwise they risk getting this very wrong.”

The Call for Evidence doesn’t give clear information and many Deaf and Disabled people’s organisations, let alone individuals potentially impacted by the bill, have missed it entirely

The process and progression of the bill is not subject to the Equality Act 2010 in the same way as a public bill introduced by the government would be. It is therefore exempt from duties to make sure Deaf and Disabled people have the same opportunities to engage with it as non-disabled people. Without the same chance to
receive information and views from us as from non-disabled people, this limits the ability of the bill Committee to thoroughly interrogate the potential risks and safety of the proposed legislation.

Tracey Lazard, CEO of Inclusion London said, “We are relieved that a DDPO will now be heard from by MPs on the Committee. However, our concerns about lack of engagement are much wider than just oral evidence. The bill is travelling through Parliament at a speed that is completely inaccessible to Deaf and Disabled people. Private Member’s Bills are not subject to the same Equality Act requirements that apply to government bills such as a duty to make reasonable adjustments to allow Deaf and Disabled people the same chance to engage as other groups.

“To our dismay the cards appear powerfully stacked against Deaf and Disabled people having the opportunity to share our expertise with MPs as they scrutinise such an important bill.

“This is unacceptable – given the relevance of this Bill to our community the committee must in the name of fairness ensure it follows the principles and practice of the Equality Act and proceed in a way that gives Deaf and Disabled people a genuine opportunity to have our voice heard on this critical issue.”

The call for evidence for written submissions to the Committee went out at the start of January but it has not been provided in accessible formats and there was no clear information about the deadlines for submitting evidence to the Committee in time for amendments to be made.

The lack of targeted outreach and resistance to including a DDPO representative has made it unjustifiably difficult for disabled people to inform the Committee of their concerns and fears about the Bill.

The Bill affects Deaf and Disabled people
Deaf and Disabled people in the UK are disproportionately affected by inequality. This includes a greater likelihood of living in poverty. We are also disadvantaged which poorer life chances as a result of increasingly restricted access to social care support, mental health services and timely medical care.

The options and support for Deaf and Disabled people to live our lives well are extremely limited, meaning that we do not have equal chances if we become terminally ill.

Arguments that the Bill is not about Deaf and Disabled people shows an alarming lack of understanding of what disability is and of the potential equalities impacts for Deaf and Disabled people who have terminal or progressive conditions and for those of us who become terminally ill.

Paula Peters, spokesperson for Disabled People Against Cuts said, “We needour voices to be heard about what life is like for disabled people, especially after a decade and a half of austerity. Anyone who is disabled who becomes
terminally ill or those with progressive conditions are experiencing that within a context of cuts to all the vital services we rely on to survive.

“In 2016 the United Nations found the UK government guilty of grave and systematic violations of disabled people’s rights. Since then, things have got much worse. According to the new government’s plans things are set to get
much worse still. You can’t give disabled people an equal choice to die until you give us more of an equal choice to live. There are more than 16.1 million of us across the UK so the equalities impacts on should not be an insignificant
consideration.”

More detail on how the Bill affects disabled people can be found here:
https://dpac.uk.net/2024/11/why-the-terminally-ill-adults-end-of-life-bill-does-affect-
disabled-people/

Editors’ notes:
Deaf and Disabled People’s Organisations (DDPOs) consist of disabled people including those with terminal illness and people with progressive conditions that will become terminal. DDPOs have expertise in disability and the issues that go to the heart of the Bill, including medical coercion, mental capacity and where the line is drawn between disability and terminal illness. Under the Equality Act 2010, people with terminal illness are counted as disabled.

The UK DDPO CRDP Monitoring Coalition co-ordinates written and oral evidence from UK DDPOs for examinations and inquiries by the UN Committee on the Rights of Disabled People. The Coalition includes: Alliance for Inclusive Education, All Wales People First, Black Triangle campaign; Disability Rights UK, Disability Wales,
Disabled People Against Cuts, DPAC Northern Ireland, Inclusion London, Inclusion Scotland, Liberation, Reclaiming Our Futures Alliance.

DPAC briefing on the Bill: https://dpac.uk.net/2024/11/choice-at-the-end-of-life-bill-briefing-from-uk-ddpo-crdp-monitoring-coalition-2/

#AssistUsToLive

END

Why Mental Health is Relevant to the Terminally Ill Adults (End of Life) Bill

 News  1 Response »
Nov 282024
 
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  • People with terminal illness and people living with mental distress are not mutually exclusive groups. We die too

We also die earlier, largely due to preventable physical illnesses.[1] People living with “Severe Mental Illness” face one of the greatest health equality gaps in England. Our life expectancy is 15–20 years shorter than that for the general population. We are also more likely than non-Disabled people to be socially isolated and to live in poverty. Research has shown that financial reasons for seeking assisted suicide are climbing among patients in Oregon.[2] Current government plans are specifically targeting those living with severe mental distress for dramatic disability benefit cuts.[3] There is evidence from jurisdictions where euthanasia and assisted suicide [EAS] are legal of people exaggerating their physical symptoms to access EAS when motivated by factors such as depression, loneliness and homelessness.[4]

 

  • Introducing a system for assisted suicide will divert resources at a crucial time

Our mental health services are part of a broken NHS. They desperately need extra investment in order to meet both existing need and escalating demand.[5] Introducing physician assisted suicide will require investment. We are concerned that this will divert resources from priority areas and delay fixing a mental health system where avoidable patient deaths are now systemic.

 

  • Non-assisted suicide rates are higher in jurisdictions where physician assisted suicide is legal

In Oregon, the suicide rate has increased by nearly one-third (32%) since the legalisation of assisted suicide.[6] The impact on non-assisted suicide rates are even more concerning when we consider the context of rising demand for mental health services that far out-strips capacity. Much more needs to be done in this country to tackle suicide prevention. For example, wider understanding about the links between peri-menopause and suicidal ideation/increased suicidal ideation.[7]

 

  • Mental distress is overlooked in both the proposed bill and in evidence from other jurisdictions

The proposed UK bill does not require persons undergo a mental health evaluation to assess for co-occurring depression or suicidality, leaving individuals with untreated or undiagnosed mental distress.  In Canada, only 6.7% of persons who died by EAS in 2021 were referred for psychiatric assessment prior to their request being granted.[8] In Oregon referrals for psychiatric assessments have decreased considerably from happening in over 31% of cases in the first year, 1998 to just over 1% of cases by 2022.[9] With three-quarters of those seeking assisted suicide reporting loneliness and 60% experiencing clinical depression, it is evident that mental health factors are being overlooked.

  • Disabled women including those living with mental distress are at higher risk of coercion.

Provisions in the bill are not adequate to safeguard against situations where patients with terminal illness are coerced to end their lives. It is very difficult for even well-trained professionals to spot coercive control. Disabled people are nearly three times as likely to experience domestic violence as non-Disabled people.[10] Groups of women with characteristics linked to certain mental health diagnoses are particularly susceptible to targeting by partners who exert coercive control.

 

  • The current wording of the bill allows for broad interpretation of “terminal illness,” and people with eating disorders could be deemed eligible.

Evidence shows that assisted dying laws have led to preventable deaths of young people with eating disorders in multiple countries.[11] At least 60 individuals with eating disorders have died through assisted death, including in jurisdictions where eligibility is restricted to terminal conditions. One-third were women under 30. The proposed UK bill aims to restrict eligibility to terminal illness, but its wording mirrors Oregon’s law, which allows any conditions expected to cause death within six months if untreated to qualify. In Oregon, this has allowed non-terminal conditions like diabetes to be considered terminal if the patient elects to forego life-extending treatments such as dialysis. This has led to deaths in cases of anorexia, arthritis, and hernias.

 

  • There is no guarantee that, once passed, legislation will not be extended to other groups of people through legal challenges.

Respected, senior human rights lawyers and experts have warned that this is a very real possibility.  It would be highly irresponsible to rule out. Many of those personally affected who are lobbying for legalisation will not be covered by the current bill and will push for a widening of its scope to include those “incurably suffering” which can be interpreted to include those living with mental distress. Mental health categories are not static and universally accepted. They can be amended to fit definitions of terminal illness as we have seen with anorexia.

 

  • Evidence from other jurisdictions shows physician assisted suicide and euthanasia [EAS] disproportionately impacts women.

A recent systematic review found that 100% of persons with eating disorders who died through assisted death were women.[12] Women also account for the majority (69–77%) of those who request and receive euthanasia for mental distress. In the Netherlands, 76% of individuals diagnosed with a personality disorder who die by euthanasia are women, many with histories of suicide attempts (47%), self-harm (27%), and trauma (36%). Alarmingly, 28% had never received psychotherapy. Given the current challenges in mental health services in England and Wales, extending legislation to cover mental distress would likely lead to a similar pattern.

[1] https://www.england.nhs.uk/long-read/improving-the-physical-health-of-people-living-with-severe-mental-illness/

[2] spcare.bmj.com/content/early/2024/04/05/spcare-2023-004292

[3] https://www.resolutionfoundation.org/publications/cutbacks-ahead/

[4] theguardian.com/news/2019/jan/18/deathon-demand-has-euthanasia-gone-too-farnetherlands-assisted-dying ; https://www.documentcloud.org/documents/25238359-canada-euthanasia-3

[5] https://www.inclusionlondon.org.uk/wp-content/uploads/2023/08/UK-DDPO-CRDP-Special-Inquiry-Shadow-Report-final.docx

[6] https://usafacts.org/answers/how-many-people-die-by-suicide/state/oregon/

[7] https://www.theguardian.com/society/2023/jan/12/not-just-hot-flushes-how-menopause-can-destroy-mental-health

[8] https://www.cambridge.org/core/journals/palliative-and-supportive-care/article/realities-of-medical-assistance-in-dying-in-canada/3105E6A45E04DFA8602D54DF91A2F568

[9] https://blogs.bmj.com/medical-ethics/2023/10/27/twenty-five-years-of-the-oregon-model-of-assisted-suicide-the-data-are-not-reassuring/

[10] communitycare.co.uk/2021/02/25/disabled-people-nearly-three-times-likely-experience-domestic-abuse-non-disabled-study-finds/

[11] static1.squarespace.com/static/58e4b708f5e2312cc949b8b4/t/66e828dde88bf757b8f0acc3/1726490860329/Assisted+Suicide+in+Eating+Disorders+Report+-+US+Version.pdf

[12] cambridge.org/core/journals/thebritish-journal-of-psychiatry/article/psychiatriceuthanasia-suicide-and-the-role-of-gender/936B360C6B2AEF2CA5360357ED8CF020

Why the Terminally Ill Adults (End of Life) bill does affect Disabled people

 News  1 Response »
Nov 282024
 
DPAC Logo with text underneath "Disabled People Against Cuts" and then web address dpac.uk.net
  • People with terminal conditions are by Disabled by definition.

 

  • Disabled people make up nearly one in four of the population and we die too. We are more likely to live in pain, to die early and to die from preventable illnesses.

 

  • Disabled people are disproportionately reliant on public services including the NHS, social care support and mental health support services – services that are broken and which we urgently need fixed. The cost and disruption of establishing an assisted suicide service will further delay improvements in these services. Delays will cost our lives. We are also concerned that terminally ill Disabled people will apply for assistance to end their lives early due to a lack of adequate support to live.

 

  • Disabled people are more likely to live in poverty and deprivation. 300 people die in poverty every single day in the UK. We are concerned that terminally ill Disabled people will apply for assistance to end their lives early by reason of poverty.

 

  • The most common reasons behind assisted suicide in Oregon are not pain – pain is only cited in around one third of cases – but lack of autonomy, not being able to enjoy the same activities and feeling a burden. These are all reasons linked to disability.

 

  • Non-terminally ill people with suicidal ideation are eligible for mental health support and treatment. We are concerned that assisted suicide will replace treatment for suicidal ideation among those who are terminally ill.

 

  • The wording of the bill is open to inclusion of people with anorexia as occurs now in US States where assisted suicide is legalised. We already have a working definition of terminal anorexia within our mental health services here.

 

  • Legalisation does not decrease non-assisted suicides. It does not even decrease non-assisted suicides of those with terminal illness. Data from jurisdictions where AS is legal suggest that legalisation increases non-assisted suicides. At a time when mental distress rates are rocketing, and when disability benefits cuts are being targeted specifically on claimants with suicidal ideation, we are concerned about the impact of normalising suicide within our society.

 

  • Disabled people are at risk of medical coercion not to continue with our lives linked to quality of life judgements. We have extensive lived experience of this through pressure to agree to DNRs (by no means limited to during the pandemic) and the Liverpool Care Pathway. The unequal value placed on our lives results in unequal access to healthcare services including life saving treatment. We are concerned that doctors will suggest assisted suicide as an option to Disabled people with terminal illness based on quality of life judgements and that this will be experienced as a form of coercion whether intended or otherwise.

 

  • Disabled people are more likely to experience coercive control. We are three times more likely to experience domestic abuse. Disabled people who are terminally ill are more at risk from inadequate safeguards in the bill.

 

  • Once passed, the legislation will be open to expansion to cover Disabled people and those deemed to be “incurably suffering”. The courts previously ruled that they would not legalise AS before a Parliamentary decision to do so. Once legalised, a discrimination case could lead to a ruling that the law is incompatible with the European Convention on Human Rights. It would be a government decision – not a Parliamentary one – to amend the law to remove this incompatibility. Evidence from other jurisdictions shows Disabled people seeking assisted suicide without access to adequate support and treatment and for socio-economic reasons.

Urgent call to action – help the last push to block the assisted suicide bill

 News  No Responses »
Nov 272024
 
DPAC Logo with text underneath "Disabled People Against Cuts" and then web address dpac.uk.net

On Friday 29 November MPs will vote on whether they agree in principle with the Terminally Ill Adults (End of Life) bill.

If it passes, this will mean Parliament having voted in favour of the principle of the State supporting people to take their own lives.

Disabled people are experts in the issues at the heart of this bill: pain, death, health services and disablism.

We have studied other jurisdictions where AS is legal.

Many of us have studied the proposed bill in depth.

Yet we keep getting told this bill doesn’t affect us.

We know this untrue.

We also seem to have a lot of information about this bill and what it means that many MPs are either choosing to disregard or haven’t had time and space to find out.

The difficulty is getting our views, our knowledge and our expertise to them when they are so overwhelmed with information, meetings and events on the subject and when they are hearing so many contradictory messages in the media.

It seems the vote is going to come down to the wire.

Which means that every single vote will count.

The most useful thing we can do at this stage is to try and get through to our own MPs, especially if they are as yet undecided on their position, and to try and get the ear of any MPs we have links with. If one MP listens and finds our information convincing they will pass this on within their MP networks. Information shared among trusted allies and friends seems to be what is making the most difference to them.

The situation is far from ideal and not a kind of campaigning that sits comfortably for DPAC but we have no choice.

We didn’t choose to be in this position and the stakes are too high not to get involved.

So, ahead of the vote on Friday, please, please, please contact your MP if you haven’t already. Even if you already have, there may be new information you want to share with them. Even if they are in Scotland or Northern Ireland, the passage of legislation in England and Wales will influence the situation across the whole of the UK.

MPs are less likely to be influenced by blanket letters but feel free to use information from our briefing documents available on our website.

Also be very clear in the subject line what the email is about and your position.

On Friday itself we are supporting Not Dead Yet UK’s vigil outside Parliament for the duration of the debate from 9.30 – 2.30pm. Some people will be arriving earlier from 8am. Please wrap up warm if you are planning to join us. DPAC will cover reasonably travel and accommodation for our members. Email mail@dpac.uk.net to find out more.

If you are unable to attend in person join the discussion on social media. Hashtag #AssistUsToLive. There are around 100MPs down to speak within the five hours allowed for this debate.

For those at home and needing peer support after the debate – whatever the outcome of the vote – we have members looking into setting up a meeting. Details of that to come.

This has been a long campaign with hugely triggering content for Disabled people. Thanks to all the amazing campaigners who have given so much time and energy, including at times when the odds against us seemed overpowering.

Most importantly please take time and remember to look after yourselves and each other.

If the law passes on Friday, rest assured, we will keep fighting.

Love and solidarity to all.

 

#AssistUsToLive Campaign Vigil – Join us 29th November 

 Assisted Dying Bill  No Responses »
Nov 242024
 
DPAC Logo with text underneath "Disabled People Against Cuts" and then web address dpac.uk.net
DPAC encourages members and supporters to join us from 8am-3pm on 29th November 2024 at College Green, Westminster, SW1P 3SE. DPAC will be joining Not Dead Yet UK as we make clear our opposition to the Assisted Suicide Bill (Terminally Ill Adults End of Life Bill) as it goes to a vote at it’s second reading on 29th November 2024.
While some activists will join for the very early start at 8am, we recognise this isn’t going to be accessible for everyone so we would encourage you to join when you can, for as much or as little time as you can between 8am-3pm. We are aiming to have a decent turn out for 8am so that the morning media rounds see that there is a steady opposition to the bill on the day. Not Dead Yet UK, who we are working alongside in this campaign, will have red and white t shirts and hats if you’re trying to spot us.
We also recognise that not everyone can join or contribute to every campaign. This campaign has a particular focus on contacting MPs as this issue is going directly to a vote on the 29th November. If you are able to email your constituency email to explain why you oppose the bill (click this link for more information on why this is a dangerous bill https://dpac.uk.net/2024/11/choice-at-the-end-of-life-bill-briefing-from-uk-ddpo-crdp-monitoring-coalition-2/ ) that is one of the most effective ways you can support this campaign.
A private members bill gets 5 hours of debate in the House of Commons. You can follow the debate live on Parliament TV from 9:30am on Friday 29th November here: https://www.parliamentlive.tv/Commons.
We recommend people wrap up warm. There may be some opportunities to go inside Parliament throughout the day while the bill is being debated. The Methodist Central Hall in Westminster usually has its cafe open in the basement which can be a good place to rest and warm up as well. We encourage everyone to do what is right for them – attending vigils in winter won’t be possible for everyone.
Westminster underground is the nearest accessible station – accessible from platform to street level by lift
Buses 3, 11, 12, 24, 53, 87, 88, 148, 159, 211, 453 all stop nearby at Parliament Square London

Mental Health and the Terminally Ill Adults (End of Life) bill

 Assisted Dying Bill  No Responses »
Nov 192024
 
DPAC Logo with text underneath "Disabled People Against Cuts" and then web address dpac.uk.net

Please contact your MP by email or on twitter and ask them to attend the meeting on Mental Health and Assisted Suicide happening 6.30 – 8.30pm in Committee Room 17 in Parliament. This meeting is being run by DPAC, the UK DDPO CRDP Monitoring Coalition and Eat Breathe Thrive. It is a closed meeting so that MPs can feel safe to ask questions and discuss the sensitive issues they are being forced to consider due to this Private Members Bill. 

Template letter as below.

Chelsea Roff, founder of Eat Breathe Thrive says:

“A recent study found that anorexia nervosa has been classified as a terminal illness for assisted death in states like Oregon, Colorado, and California. Among 60 documented cases, a third described the deaths of young women in their teens or twenties. All were female. Many patients had high rates of depression (89%), suicidal thoughts (58%), and previous suicide attempts (37%), raising concerns about whether mental distress played a role in their requests to die.

There has also been a rise in cases where patients were prescribed lethal medication due to severe malnutrition. Colorado’s latest report includes 12 cases where “severe protein-calorie malnutrition” was listed as a terminal condition. It is unclear if these patients had anorexia, but malnutrition is not typically seen as a terminal illness, which raises important questions about how these laws are being applied.

Nearly all medical complications of eating disorders (with the exception of osteoporosis) are reversible with refeeding and weight restoration. In some of the cases we reviewed, patients who were described as terminal had never even received a full course of inpatient treatment nor fully restored their body weight. Anorexia nervosa is not a terminal illness, yet this has not prevented physicians in other countries from treating it as such, and citing the physical complications of a mental illness as terminal, contrary to a large body of scientific evidence.”

 

Dear MP,

As Parliament prepares for the second reading of the Terminally Ill Adults (End of Life) Bill on 29 November, there is an urgent need to consider its very real potential impact on individuals with mental health conditions, including eating disorders and those living with suicidal ideation and self-injury.

While debates on assisted dying often focus on matters of principle, the realities of implementing safeguards within the NHS are less frequently discussed.

This briefing will examine how broad definitions of ‘terminal illness’ could make young women with treatable eating disorders eligible for assisted dying, the difficulty of distinguishing voluntary requests from suicidal ideation, and the disproportionate risks faced by individuals living with suicidal ideation and self-injury.

We invite you to join us for a special briefing on these issues, sponsored by James Frith MP and co-organised by Ellen Clifford of UK Coalition of Deaf and Disabled People’s Organisations [DDPOs]* and Chelsea Roff of Eat Breathe Thrive*.

The briefing will take place on Tuesday, 19th November, 6:30-8:30pm, in Committee Room 17, House of Commons.

Speakers to include: Dr Annabel Price, Royal College of Psychiatrists; Professor Lars Mehlum, Founding director of the National Centre for Suicide Research and Prevention at the Institute of Clinical Medicine; Dr Agnes Ayton, Consultant Psychiatrist; Dr Ali Ibrahim, eating Disorder Consultant; Chelsea Roff. Eating Disorder Researcher and advocate; James Downs, Researcher and Eating Disorder Campaigner; Ellen Clifford, Disabled Activist and author. More to be announced.

Briefings and presentation hand-outs will be available on the day and sent electronically after the event to attendees. Please let us know of any access requirements.

We look forward to seeing you on Tuesday. Please RSVP to: chelsea@eatbreathethrive.org

 

*Eat Breathe Thrive is a nonprofit organization that works to prevent and help people recover from eating disorders through yoga.

* UK DDPO Convention on the Rights of Disabled People [CRDP] Monitoring Coalition is a network of used led organisations established to monitor implementation of the CRDP and lobby government on shared priorities for Deaf and Disabled people across the UK.

 

Terminally Ill Adults (End of Life) Bill – briefing from UK DDPO CRDP Monitoring Coalition

 Assisted Dying Bill  1 Response »
Nov 162024
 
DPAC Logo with text underneath "Disabled People Against Cuts" and then web address dpac.uk.net

We are a secular, human rights network of organisations run and controlled by Deaf and Disabled people (DDPOs) from across the UK.[1] We monitor and campaign for implementation of the UN Convention on the Rights of Disabled People, promoting the interests of 16.1 million Disabled people.[2]   This includes those who are terminally ill and who live with progressive, life-threatening conditions.

The debate around legalisation of assisted suicide[3] (AS) requires profound sensitivity and compassion. On both sides of the argument are lived experience of pain, suffering and distress.

The implications of this Private Members’ Bill (PMB) are far-reaching with serious potential consequences.  There is no straightforward way to legalise AS and the issues involved are complex. There are no clear lines, only blurred boundaries.

This is why no DDPO in the UK is in favour of legalisation. Additionally, all medical bodies remain opposed or neutral on the subjects. Doctors working in specialities such as oncology, geriatrics and palliative care, those where they are most likely to work with dying people, are the most opposed.[4]

We urge Parliamentarians to rigorously engage with all perspectives and the evidence base on which they rest.

Our key concerns are as follows:

  • LIMITING ELIGIBILITY AND SAFEGUARDING
  • Need to consider in detail lessons from other jurisdictions where AS is legal.
  • Pressures to extend eligibility. This has happened in ALL jurisdictions where it has been legalised so far. Legal experts warn the same will happen here. Pressure is already being exerted to within Westminster and by the main campaigning organisations in favour.
  • Risk of abuse and need to consider whether AS can ever be safely legislated for.

 

NEED FOR PROPER SCRUTINY

  • Legalisation entails a fundamental shift in society but a PMB gives little scope for scrutiny.
  • Need for extensive pre-legislative work by an independent commission.
  • Inadequacy of the health and social care select committee inquiry as a basis for legislation.
  • Need to question unconscious assumptions about quality of life.

 

FIX THE FOUNDATIONS FIRST

  • Palliative care is in crisis. Choice at the end of life must include the choice to die at home and to die naturally in as little pain as current medical knowledge can provide for.
  • Services (NHS, social care, mental health) to support those who live in pain and distress are broken. Assisted suicide must not become a replacement for public services.

For more detail on the above see the following pages / go to: https://dpac.uk.net/2024/10/choice-at-the-end-of-life-bill-briefing-from-uk-ddpo-crdp-monitoring-coalition/

 

1)         LIMITNG ELIGIBILITY AND SAFEGUARDING

These two issues are of fundamental importance to the question of legalisation. There are no easy answers to either.

Any legislation must robustly safeguard against abuse. The risks are too big to disregard.

Those who are well-intentioned often under-estimate the capacity of others to take advantage of those whose situations make them vulnerable. Harsh reality is evidenced by the fact that Disabled people are statistically more likely to be victims of crime and abuse than non-Disabled people. We are three times more likely to be the victims of domestic abuse.[5]  

Consideration of adequate safeguarding must be informed by a full understanding of the factors involved in abuse and exploitation of those at the end of life, of the complex dynamic between carers and those needing support and of established difficulties not only spotting but also addressing abuse.

Examples of abuse from other jurisdictions where AS is legal must be carefully explored including reports of coercion pushing individuals to end their lives against their wishes[6] and the situation in Canada where AS has been linked to human rights concerns.[7]

Widening of the original eligibility has occurred in ALL jurisdictions where AS has been legalised.

Eligibility is a complex issue to begin with. It is not possible for doctors to give an accurate prognosis of how much longer a person has left to life. This makes it difficult to limit eligibility to those with only a set time left to live naturally and makes legislation vulnerable to extension.

In Oregon, the list of diagnoses covered by the definition of terminal illness under AS legislation has grown and now includes, for example, anorexia,[8] and diabetes.[9]

In 2021, the Canadian Parliament voted to extend their Medical Assistance in Dying (MAiD) programme to people with mental health conditions.[10] The introduction of this expansion has been paused until 2027.[11] Meanwhile, from 30 October, the Canadian province of Quebec started allowing people with incurable diseases or in the early stages of dementia to make advance directives specifying conditions under which they could receive medical assistance in dying without giving further consent.[12]

In four out of eight of the jurisdictions where AS is legal, young people living with mental distress who might otherwise have lived decades have been granted euthanasia. One study found that the majority of people labelled with personality disorders who have been granted EAS (euthanasia or assisted suicide) had not received any relevant evidence-based treatment.[13]

With wider eligibility, one of the areas of greatest concern involves questions of mental capacity, coercion and abuse of advance directives.

KC Alex Ruck Keene, who is a legal expert in mental health and mental capacity law and who represented Noel Conway, a man with Motor Neurone Disease who took his legal challenge fighting for the right for assisted suicide to the Supreme Court, says the idea that capacity is straightforward is “hopelessly naïve” and stresses that Parliament has to be aware that working it through is not immediately straightforward.[14]

In the Netherlands, there have been cases where people labelled as not having capacity have been held to advance directives made at a different time in their lives and forcibly killed against their wishes. There is one report from the Netherlands of a person being physically restrained by relatives, in order for the physician to administer the lethal dose.[15]

It is also not uncommon for patients to use physical conditions to access euthanasia or AS while motivated by reasons that are outside the eligibility criteria such as depression, loneliness[16] or homelessness.[17]

The percentage of those granted AS in Oregon who cite financial concerns as one of the reasons for their decision has been steadily rising over recent years.[18]

Inadequate pain control remains as an end of life concern for only around one third with loss of autonomy and inability to participate in enjoyable activities scoring highest.[19] Figures for those citing that they “feel a burden” remains at around one half.[20]

Autonomy and being a burden are distinctly different concepts from end-of-life pain.

They are also ones with which Disabled people are extremely familiar.

We understand that there is no inevitable connection between reliance on assistance to live and a desire to die.

If given the chance, and with the right support, people can and do adapt to circumstances they once imagined they would find intolerable.[21]

We have read reports of lobbying by MPs who support legalisation for the PMB to include those who are “incurably suffering”[22].

Many of those campaigning for the right to take their lives through assisted suicide will not qualify under Leadbeater’s bill so legal challenges on the grounds of discrimination will inevitably follow any passage of the bill into legislation.

A dozen human rights barristers and legal scholars have warned that the Leadbeater bill could breach the European Court of Human Rights by denying some groups access to AS while granting it to others.[23]

We urge Parliamentarians to seriously consider whether AS can be safely legislated for in any form; and, not to allow any legislation to pass that is both without adequate safeguards against abuse and against future widening of eligibility beyond the original intention.

 

2)         NEED FOR PROPER SCRUTINY

The question of AS legalisation requires time for extensive study, evidence-based discussion and heavy scrutiny.

Legislation will turn an abstract idea into a reality with enormous implications, impacting the lives and deaths of millions of individuals as well as touching the lives of all those who care what happens to them.

Anecdotally, we know of family members of those who have chosen to have their lives ended through the MAiD programme in Canada left bereft that they never had a chance to try to change their lived ones’ minds.[24]

“…none of her immediate family knew that Ms. [Wilma] Hertgers had been approved for medical assistance in dying, let alone set a date. Not her 88-year-old mother, whom she called twice a day. Not her older brother, who lived one town over. And not Mr. Hertgers, 61, [her other brother] who had only that Friday, after driving the four hours to Chilliwack, B.C., shared a pot of tea at Wilma’s kitchen table.”[25]

It will change the essential nature of the role of the physician.

At the same time, it represents a fundamental shift in society from one where State intervention in the lives of its citizens is concerned with saving and extending life to one where it also provides for assistance to end one’s life.

KC Alex Ruck Keene has warned:

“That’s the thing I think is very difficult in this space to think about. Because you have individual stories which are very, very powerful, and we’ve got lots of other individual stories out there in the public domain at the moment. But the law can’t operate for individuals. The law has to operate for everybody.”[27]

Parliament will only be able to do this ONCE.

Any gaps or oversights will have profound consequences.

Professor of Health Care Ethics, Theo Boer, who was originally in favour of AS legalisation when it was passed in the Netherlands and is now a strong critic, has warned:

“We [in the Netherlands] have put in motion something that we have now discovered has more consequences than we ever imagined.”[28]

It is welcome that the second reading of this bill is scheduled for later than anticipated on 29 November 2024. However, the timeframe for adequate consideration of the many complex facets of this question is still inappropriately tight.

The Government has made it clear that it will not take any steps towards legalisation and this will only happen through Parliament, should its members choose to.

It remains the case that the more limited Parliamentary scrutiny given to PMBs makes this an unsuitable mechanism for enacting legislation on this issue.

It feels extremely unfair for new Parliamentarians to be asked to vote on an issue of this magnitude while they are still finding their feet.

A law of this nature requires extensive pre-legislative work by an independent, properly resourced commission.

The inquiry undertaken by the health and social care select committee in 2023 does not provide an adequate basis for legislation and does not negate this need.[29]

The committee’s aim was to publish a report to serve as a basis for discussion and debate in future Parliaments, and not to inform the drafting of actual legislation.

The conclusion to the report states:

“The debate on AD/AS is not new, and our report is not intended to provide a resolution to it.”[30]

Those with decision making-powers on this question must have the chance to reflect on unconscious assumptions about quality of life and what makes a life worth living that may influence their ideas on the subject.

There are people in the same situations, living with the same levels of pain, distress, physical limitations and/or degenerative conditions as those campaigning for legalisation who are opposed to it.

It is important to understand the different perspectives.

Nicki Myers, a Disabled woman who lives in Cambridge, said:

“I’ve been a Disabled person for my entire life but I was diagnosed with a terminal condition in 2017. I have almost died so many times and then I’ve rallied. I did not expect to still be alive now. I’ve been able to support my children and grandchildren, paint portraits from my bed, spend time with friends. My view on assisted suicide has never wavered, despite some very difficult times. In the UK, we do not have sufficient health and social care support or adequate palliative care or hospice services for legalisation to be safe. I have been reassured by the doctor at my hospice about my last days. Everyone should be able to access services to give them a good death.”

We urge Parliamentarians to ensure they have adequate time and information to give due scrutiny to legislation of such a profound nature.

 

3)          FIX THE FOUNDATIONS FIRST

AS must not become a way of plugging gaps left by broken services.

The UK must not follow in Canada’s foot-steps where human rights experts continue to express “alarm about the significant human rights concerns” presented by inadequate safeguards and the proposed expansion of MAiD.[31]

The Canadian Human Rights Commission is particularly concerned about reports that Disabled people are applying for and being granted MAiD because:

              “ they cannot access the basic supports and services they need to live with dignity.”[32]

They have stated that:

“MAiD cannot be a default for Canada’s failure to fulfill its human rights obligations”[33]

This is a situation that could very easily happen here under current conditions.

Dr Bob Gill, a family doctor for over 20 years, said:

“I strongly oppose the concept of assisted dying because there is a great risk that the patient’s decision is shaped by many external factors including the sense of guilt and anticipation of suffering…  Our fight should be for better funding and access social services, restoration of benefit payments and high-quality public service.”

More than 3,400 NHS staff have warned against putting an added burden on the ‘broken’ NHS by legalising assisted suicide.[34]

In the letter, 2,038 doctors, 905 nurses, and 462 other healthcare workers expressed their concerns, saying:

“The thought of assisted suicide being introduced and managed safely at such a time is remarkably out of touch with the gravity of the current mental health crisis and pressures on staff.”[35]

The letter added that the:

“Any change would threaten society’s ability to safeguard vulnerable patients from abuse; it would undermine the trust the public places in physicians; and it would send a clear message to our frail, elderly and disabled patients about the value that society places on them as people.”[36]

Palliative care is in crisis and increasingly unable to meet the needs of those requiring support to die with dignity and with as little pain as possible.

The Association for Palliative Medicine opposes any change in the law that could lead to the supply or administration of lethal medications to deliberately end a person’s life.[37]

84% of respondents to a survey carried out by the British Medical Association who work in palliative care said they would not be willing to actively participate in the process of prescribing life-ending drugs.[38]

A survey carried out by King’s College London found that over 100,000 people in the UK die each year needing palliative care but do not receive it, and inequalities in accessing care, including among people from ethnic minority groups, are common.”

Professor Katherine Sleeman, from the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care at King’s College London said:

“The shocking gap in the public’s understanding of palliative and end of life care also needs to be addressed… It is essential that we address the disparities that create additional barriers for people to access the care that they need.” [39]

Palliative care has long been chronically under-funded with hospices relying on charity for the majority of their income.

According to data published by Hospice UK in September 2023, England’s adults’ hospices experienced a real-terms cut in their Government funding of £47m in the preceding two years.[40] None received any uplift in line with inflation over that period.[41]

Toby Porter, CEO of Hospice UK said:

“On average, only one third of adult hospice income comes from the state, leaving hospices to rely on charitable donations to pay for the majority of their vital work. With the cost of living crisis affecting everyone, many hospices are increasingly concerned that their local communities will not be able to continue to give as generously.”[42]

Many palliative care professionals fear that AS legalisation will lead to further reductions in funding justified on the basis that money will be saved through elimination of support costs for those opting to end their lives early.

This will mean increased denial of palliative care services to those who want and need them.

Anecdotally, we know of State funded palliative care services making frontline redundancies due to funding cuts. Staff working in the community fear they will be the first to go, removing patients’ choice to die at home.

Choice at the end of life is only meaningful if it includes the choice to access palliative care support right up until a natural end.

It also requires adequate support to continue living where there is no immediate terminal prognosis.

Sadly, the situation in the UK is far removed from this.

The Prime Minister has described the NHS as broken.[43] Social care and mental health services are in the same desperate state.[44] [45] There is also a housing crisis[46] and figures show that poverty rose dramatically among Disabled people even before the cost-of-living crisis.[47]

In 2016, an unprecedented special inquiry by the United Nations Committee on the Rights of Disabled People found the UK government guilty of grave and systematic rights violations. Two of the three areas on which the inquiry focused were support to live in the community, and income and adequate social protection.

Disabled people have direct and often very distressing lived experience of the impact of inadequate service levels, staff shortages and long waiting lists not just on our own lives but also on those of loved ones left to take the strain.

Nathan Lee Davies, a Disabled man with Friedreich’s Ataxia, a progressive genetic condition of the nervous system said:

“The median age of death for someone with my condition is 35. I am 47. None of us know what is around the corner and this is why I passionately oppose assisted suicide.

“We all have a role to play in society. The main problem now is that people with impairments are overlooked and denied the services we need to express our creativity and be part of our communities. I have written three books and produced art works and there is more I passionately want to do.

“But I am currently tied up in a battle with my Local Authority who would rather tie me up in red tape. I haven’t seen a social worker in the past year and a half. I have a continual nightmare recruiting suitable Personal Assistants. Without support I am unable to eat, drink, use the toilet or wash, I can’t write or reply to emails from friends. I should be enjoying the final years of my limited life but instead I am trapped inside my bungalow.”

Disabled people in the UK are in urgent need of adequate support to meet our most basic needs.

In jurisdictions where eligibility has widened beyond terminal illness, our peers are choosing to end their lives not because of pain but because they are not able to access support to participate and contribute to society.

There are also anecdotal reports of Disabled people being inappropriately offered, pressured or made to feel guilty by professionals because they are choosing to carry on living and not opting to kill themselves.[48]

We urge Parliamentarians to be on the side of real and meaningful choice – not only over the deaths of individuals who live with pain and distress but also over the right of millions of Disabled and older people to live.

 

For more information contact: mail@dpac.uk.net

 

Additional resources

Documentary

Better Off Dead? A documentary on assisted suicide, authored by actor and disability rights activist Liz Carr.

Journal articles and research

Assisted death in eating disorders: a systematic review of cases and clinical rationales – https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2024.1431771/full

Assisted dying: Quebec allows advance directives, defying federal ban – https://www.bmj.com/content/386/bmj.q2029

Euthanasia and assisted suicide in patients with personality disorders: a review of current practice and challenges – https://bpded.biomedcentral.com/articles/10.1186/s40479-020-00131-9

Oregon Death with Dignity Act access: 25 year analysis – https://spcare.bmj.com/content/early/2024/04/05/spcare-2023-004292

Psychiatric euthanasia, suicide and the role of gender – https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/psychiatric-euthanasia-suicide-and-the-role-of-gender/936B360C6B2AEF2CA5360357ED8CF020

Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined – https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-022-00599-6

The Dangers of Physician Assisted Suicide in Eating Disorders – https://static1.squarespace.com/static/58e4b708f5e2312cc949b8b4/t/66e828dde88bf757b8f0acc3/1726490860329/Assisted+Suicide+in+Eating+Disorders+Report+-+US+Version.pdf

Lived Experience

Canada – https://living-with-dignity.ca/remembering-lives-lived/

Media articles and press releases

Assisted dying/assisted suicide: Too many “complicating factors” to be safely implemented, says British public in new poll

https://www.bbc.co.uk/news/world-us-canada-68120380

https://www.chrc-ccdp.gc.ca/en/resources/ending-ones-life-must-be-a-true-and-informed-choice

https://www.dailymail.co.uk/news/article-14067911/Doubts-Assisted-Dying-Bill-grow-doctors-nurses-warn-added-pressures-broken-NHS-campaigners-insist-people-hope.html

https://www.hospiceuk.org/latest-from-hospice-uk/hospice-funding-falls-short-ps47m

https://www.independent.co.uk/news/world/americas/canada-euthansia-maid-gofundme-homeless-b2228890.html

https://www.kcl.ac.uk/news/65-of-adults-are-worried-about-access-to-palliative-care

https://www.politicshome.com/thehouse/article/alex-ruck-keene-kc-assisted-dying-parliamentarians-radically-unsupported

https://www.telegraph.co.uk/politics/2024/10/05/widen-access-to-assisted-dying-say-labour-mps/

https://www.telegraph.co.uk/politics/2024/11/09/assisted-dying-echr-discrimination-human-rights/

https://www.theguardian.com/news/2019/jan/18/death-on-demand-has-euthanasia-gone-too-far-netherlands-assisted-dying

https://www.theguardian.com/society/2023/jul/13/anorexia-right-to-die-terminal-mental-health

https://www.theguardian.com/world/2024/feb/25/canada-assisted-dying-laws-in-spotlight-as-expansion-paused-again

Position statements and briefings

Association for Palliative Medicine [APM] – https://apmonline.org/wp-content/uploads/APM-Position-Statement-on-Assisted-Dying-October-2024-v2.pdf

BMA – https://www.bma.org.uk/advice-and-support/ethics/end-of-life/physician-assisted-dying/physician-assisted-dying-survey

Joint Statement Against Assisted Suicide For Eating Disorders – https://www.eatbreathethrive.org/joint-statement-assisted-suicide

Reports

Report from the health and social care select committee inquiry into assisted suicide: https://publications.parliament.uk/pa/cm5804/cmselect/cmhealth/321/report.html

Written evidence submitted to health and social care select committee inquiry:

Professor of Palliative Care, Baroness Finlay

Professor of Health Care Ethics, Theo Boer

Ministry of the Solicitor General | Office of the Chief Coroner MAiD Death Review Committee Report 2024 – 3 2024 Navigating Vulnerability in Non-Reasonably Foreseeable Natural Deaths

Website

https://notdeadyetuk.co.uk/ The website of Not Dead Yet UK, a UK-based network who are part of a global alliance of disabled people, who oppose euthanasia and assisted suicide.

 

 

 

Choice at the End of Life bill – briefing from UK DDPO CRDP Monitoring Coalition

 Assisted Dying Bill  No Responses »
Oct 162024
 
DPAC Logo with text underneath "Disabled People Against Cuts" and then web address dpac.uk.net

We are a secular, human rights network of organisations run and controlled by Deaf and Disabled people (DDPOs) from across the UK.[1] We monitor and campaign for implementation of the UN Convention on the Rights of Disabled People, promoting the interests of 16.1 million Disabled people.[2]   This includes those who are terminally ill and who live with progressive, life-threatening conditions.

The debate around legalisation of assisted suicide[3] (AS) requires profound sensitivity and compassion. On both sides of the argument are lived experience of pain, suffering and distress.

The implications of this Private Members’ Bill (PMB) are far-reaching with serious potential consequences.  There is no straightforward way to legalise AS and the issues involved are complex. There are no clear lines, only blurred boundaries.

This is why no DDPO in the UK is in favour of legalisation. Additionally, all medical bodies remain opposed or neutral on the subjects. Doctors working in specialities such as oncology, geriatrics and palliative care, those where they are most likely to work with dying people, are the most opposed.[4]

We urge Parliamentarians to rigorously engage with all perspectives and the evidence base on which they rest.

Our key concerns are as follows:

  • LIMITING ELIGIBILITY AND SAFEGUARDING
  • Need to consider in detail lessons from other jurisdictions where AS is legal.
  • Pressures to extend eligibility. This has happened in ALL jurisdictions where it has been legalised so far. Legal experts warn the same will happen here. Pressure is already being exerted to within Westminster and by the main campaigning organisations in favour.
  • Risk of abuse and need to consider whether AS can ever be safely legislated for.

 

NEED FOR PROPER SCRUTINY

  • Legalisation entails a fundamental shift in society but a PMB gives little scope for scrutiny.
  • Need for extensive pre-legislative work by an independent commission.
  • Inadequacy of the health and social care select committee inquiry as a basis for legislation.
  • Need to question unconscious assumptions about quality of life.

 

FIX THE FOUNDATIONS FIRST

  • Palliative care is in crisis. Choice at the end of life must include the choice to die at home and to die naturally in as little pain as current medical knowledge can provide for.
  • Services (NHS, social care, mental health) to support those who live in pain and distress are broken. Assisted suicide must not become a replacement for public services.

For more detail on the above see the following pages / go to: https://dpac.uk.net/2024/10/choice-at-the-end-of-life-bill-briefing-from-uk-ddpo-crdp-monitoring-coalition/

 

1)         LIMITNG ELIGIBILITY AND SAFEGUARDING

These two issues are of fundamental importance to the question of legalisation. There are no easy answers to either.

Any legislation must robustly safeguard against abuse. The risks are too big to disregard.

Those who are well-intentioned often under-estimate the capacity of others to take advantage of those whose situations make them vulnerable. Harsh reality is evidenced by the fact that Disabled people are statistically more likely to be victims of crime and abuse than non-Disabled people. We are three times more likely to be the victims of domestic abuse.[5]  

Consideration of adequate safeguarding must be informed by a full understanding of the factors involved in abuse and exploitation of those at the end of life, of the complex dynamic between carers and those needing support and of established difficulties not only spotting but also addressing abuse.

Examples of abuse from other jurisdictions where AS is legal must be carefully explored including reports of coercion pushing individuals to end their lives against their wishes[6] and the situation in Canada where AS has been linked to human rights concerns.[7]

Widening of the original eligibility has occurred in ALL jurisdictions where AS has been legalised.

Eligibility is a complex issue to begin with. It is not possible for doctors to give an accurate prognosis of how much longer a person has left to life. This makes it difficult to limit eligibility to those with only a set time left to live naturally and makes legislation vulnerable to extension.

In Oregon, the list of diagnoses covered by the definition of terminal illness under AS legislation has grown and now includes, for example, anorexia,[8] and diabetes.[9]

In 2021, the Canadian Parliament voted to extend their Medical Assistance in Dying (MAiD) programme to people with mental health conditions.[10] The introduction of this expansion has been paused until 2027.[11] Meanwhile, from 30 October, the Canadian province of Quebec started allowing people with incurable diseases or in the early stages of dementia to make advance directives specifying conditions under which they could receive medical assistance in dying without giving further consent.[12]

In four out of eight of the jurisdictions where AS is legal, young people living with mental distress who might otherwise have lived decades have been granted euthanasia. One study found that the majority of people labelled with personality disorders who have been granted EAS (euthanasia or assisted suicide) had not received any relevant evidence-based treatment.[13]

With wider eligibility, one of the areas of greatest concern involves questions of mental capacity, coercion and abuse of advance directives.

KC Alex Ruck Keene, who is a legal expert in mental health and mental capacity law and who represented Noel Conway, a man with Motor Neurone Disease who took his legal challenge fighting for the right for assisted suicide to the Supreme Court, says the idea that capacity is straightforward is “hopelessly naïve” and stresses that Parliament has to be aware that working it through is not immediately straightforward.[14]

In the Netherlands, there have been cases where people labelled as not having capacity have been held to advance directives made at a different time in their lives and forcibly killed against their wishes. There is one report from the Netherlands of a person being physically restrained by relatives, in order for the physician to administer the lethal dose.[15]

It is also not uncommon for patients to use physical conditions to access euthanasia or AS while motivated by reasons that are outside the eligibility criteria such as depression, loneliness[16] or homelessness.[17]

The percentage of those granted AS in Oregon who cite financial concerns as one of the reasons for their decision has been steadily rising over recent years.[18]

Inadequate pain control remains as an end of life concern for only around one third with loss of autonomy and inability to participate in enjoyable activities scoring highest.[19] Figures for those citing that they “feel a burden” remains at around one half.[20]

Autonomy and being a burden are distinctly different concepts from end-of-life pain.

They are also ones with which Disabled people are extremely familiar.

We understand that there is no inevitable connection between reliance on assistance to live and a desire to die.

If given the chance, and with the right support, people can and do adapt to circumstances they once imagined they would find intolerable.[21]

Scope for wider eligibility is given by the title “Choice at the End of Life”, which does not limit the legislation to just one group of people, unlike the PMB it superseded (Lord Falconer’s Assisted Dying for Terminally Ill Adults bill).

This aligns with reports of lobbying for the PMB to include those who are “incurably suffering”[22] and would significantly broaden eligibility beyond Kim Leadbeater’s original intention of legalising only for those with terminal illness.

Many of those campaigning for the right to take their lives through assisted suicide will not qualify under Leadbeater’s bill so legal challenges on the grounds of discrimination will inevitably follow any passage of the bill into legislation.

A dozen human rights barristers and legal scholars have warned that the Leadbeater bill could breach the European Court of Human Rights by denying some groups access to AS while granting it to others.[23]

We urge Parliamentarians to seriously consider whether AS can be safely legislated for in any form; and, not to allow any legislation to pass that is both without adequate safeguards against abuse and against future widening of eligibility beyond the original intention.

 

2)         NEED FOR PROPER SCRUTINY

The question of AS legalisation requires time for extensive study, evidence-based discussion and heavy scrutiny.

Legislation will turn an abstract idea into a reality with enormous implications, impacting the lives and deaths of millions of individuals as well as touching the lives of all those who care what happens to them.

Anecdotally, we know of family members of those who have chosen to have their lives ended through the MAiD programme in Canada left bereft that they never had a chance to try to change their lived ones’ minds.[24]

“…none of her immediate family knew that Ms. [Wilma] Hertgers had been approved for medical assistance in dying, let alone set a date. Not her 88-year-old mother, whom she called twice a day. Not her older brother, who lived one town over. And not Mr. Hertgers, 61, [her other brother] who had only that Friday, after driving the four hours to Chilliwack, B.C., shared a pot of tea at Wilma’s kitchen table.”[25]

It will change the essential nature of the role of the physician.

At the same time, it represents a fundamental shift in society from one where State intervention in the lives of its citizens is concerned with saving and extending life to one where it also provides for assistance to end one’s life.

KC Alex Ruck Keene has warned:

“That’s the thing I think is very difficult in this space to think about. Because you have individual stories which are very, very powerful, and we’ve got lots of other individual stories out there in the public domain at the moment. But the law can’t operate for individuals. The law has to operate for everybody.”[27]

Parliament will only be able to do this ONCE.

Any gaps or oversights will have profound consequences.

Professor of Health Care Ethics, Theo Boer, who was originally in favour of AS legalisation when it was passed in the Netherlands and is now a strong critic, has warned:

“We [in the Netherlands] have put in motion something that we have now discovered has more consequences than we ever imagined.”[28]

It is welcome that the second reading of this bill is scheduled for later than anticipated on 29 November 2024. However, the timeframe for adequate consideration of the many complex facets of this question is still inappropriately tight.

The Government has made it clear that it will not take any steps towards legalisation and this will only happen through Parliament, should its members choose to.

It remains the case that the more limited Parliamentary scrutiny given to PMBs makes this an unsuitable mechanism for enacting legislation on this issue.

It feels extremely unfair for new Parliamentarians to be asked to vote on an issue of this magnitude while they are still finding their feet.

A law of this nature requires extensive pre-legislative work by an independent, properly resourced commission.

The inquiry undertaken by the health and social care select committee in 2023 does not provide an adequate basis for legislation and does not negate this need.[29]

The committee’s aim was to publish a report to serve as a basis for discussion and debate in future Parliaments, and not to inform the drafting of actual legislation.

The conclusion to the report states:

“The debate on AD/AS is not new, and our report is not intended to provide a resolution to it.”[30]

Those with decision making-powers on this question must have the chance to reflect on unconscious assumptions about quality of life and what makes a life worth living that may influence their ideas on the subject.

There are people in the same situations, living with the same levels of pain, distress, physical limitations and/or degenerative conditions as those campaigning for legalisation who are opposed to it.

It is important to understand the different perspectives.

Nicki Myers, a Disabled woman who lives in Cambridge, said:

“I’ve been a Disabled person for my entire life but I was diagnosed with a terminal condition in 2017. I have almost died so many times and then I’ve rallied. I did not expect to still be alive now. I’ve been able to support my children and grandchildren, paint portraits from my bed, spend time with friends. My view on assisted suicide has never wavered, despite some very difficult times. In the UK, we do not have sufficient health and social care support or adequate palliative care or hospice services for legalisation to be safe. I have been reassured by the doctor at my hospice about my last days. Everyone should be able to access services to give them a good death.”

We urge Parliamentarians to ensure they have adequate time and information to give due scrutiny to legislation of such a profound nature.

 

3)          FIX THE FOUNDATIONS FIRST

AS must not become a way of plugging gaps left by broken services.

The UK must not follow in Canada’s foot-steps where human rights experts continue to express “alarm about the significant human rights concerns” presented by inadequate safeguards and the proposed expansion of MAiD.[31]

The Canadian Human Rights Commission is particularly concerned about reports that Disabled people are applying for and being granted MAiD because:

              “ they cannot access the basic supports and services they need to live with dignity.”[32]

They have stated that:

“MAiD cannot be a default for Canada’s failure to fulfill its human rights obligations”[33]

This is a situation that could very easily happen here under current conditions.

Dr Bob Gill, a family doctor for over 20 years, said:

“I strongly oppose the concept of assisted dying because there is a great risk that the patient’s decision is shaped by many external factors including the sense of guilt and anticipation of suffering…  Our fight should be for better funding and access social services, restoration of benefit payments and high-quality public service.”

More than 3,400 NHS staff have warned against putting an added burden on the ‘broken’ NHS by legalising assisted suicide.[34]

In the letter, 2,038 doctors, 905 nurses, and 462 other healthcare workers expressed their concerns, saying:

“The thought of assisted suicide being introduced and managed safely at such a time is remarkably out of touch with the gravity of the current mental health crisis and pressures on staff.”[35]

The letter added that the:

“Any change would threaten society’s ability to safeguard vulnerable patients from abuse; it would undermine the trust the public places in physicians; and it would send a clear message to our frail, elderly and disabled patients about the value that society places on them as people.”[36]

Palliative care is in crisis and increasingly unable to meet the needs of those requiring support to die with dignity and with as little pain as possible.

The Association for Palliative Medicine opposes any change in the law that could lead to the supply or administration of lethal medications to deliberately end a person’s life.[37]

84% of respondents to a survey carried out by the British Medical Association who work in palliative care said they would not be willing to actively participate in the process of prescribing life-ending drugs.[38]

A survey carried out by King’s College London found that over 100,000 people in the UK die each year needing palliative care but do not receive it, and inequalities in accessing care, including among people from ethnic minority groups, are common.”

Professor Katherine Sleeman, from the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care at King’s College London said:

“The shocking gap in the public’s understanding of palliative and end of life care also needs to be addressed… It is essential that we address the disparities that create additional barriers for people to access the care that they need.” [39]

Palliative care has long been chronically under-funded with hospices relying on charity for the majority of their income.

According to data published by Hospice UK in September 2023, England’s adults’ hospices experienced a real-terms cut in their Government funding of £47m in the preceding two years.[40] None received any uplift in line with inflation over that period.[41]

Toby Porter, CEO of Hospice UK said:

“On average, only one third of adult hospice income comes from the state, leaving hospices to rely on charitable donations to pay for the majority of their vital work. With the cost of living crisis affecting everyone, many hospices are increasingly concerned that their local communities will not be able to continue to give as generously.”[42]

Many palliative care professionals fear that AS legalisation will lead to further reductions in funding justified on the basis that money will be saved through elimination of support costs for those opting to end their lives early.

This will mean increased denial of palliative care services to those who want and need them.

Anecdotally, we know of State funded palliative care services making frontline redundancies due to funding cuts. Staff working in the community fear they will be the first to go, removing patients’ choice to die at home.

Choice at the end of life is only meaningful if it includes the choice to access palliative care support right up until a natural end.

It also requires adequate support to continue living where there is no immediate terminal prognosis.

Sadly, the situation in the UK is far removed from this.

The Prime Minister has described the NHS as broken.[43] Social care and mental health services are in the same desperate state.[44] [45] There is also a housing crisis[46] and figures show that poverty rose dramatically among Disabled people even before the cost-of-living crisis.[47]

In 2016, an unprecedented special inquiry by the United Nations Committee on the Rights of Disabled People found the UK government guilty of grave and systematic rights violations. Two of the three areas on which the inquiry focused were support to live in the community, and income and adequate social protection.

Disabled people have direct and often very distressing lived experience of the impact of inadequate service levels, staff shortages and long waiting lists not just on our own lives but also on those of loved ones left to take the strain.

Nathan Lee Davies, a Disabled man with Friedreich’s Ataxia, a progressive genetic condition of the nervous system said:

“The median age of death for someone with my condition is 35. I am 47. None of us know what is around the corner and this is why I passionately oppose assisted suicide.

“We all have a role to play in society. The main problem now is that people with impairments are overlooked and denied the services we need to express our creativity and be part of our communities. I have written three books and produced art works and there is more I passionately want to do.

“But I am currently tied up in a battle with my Local Authority who would rather tie me up in red tape. I haven’t seen a social worker in the past year and a half. I have a continual nightmare recruiting suitable Personal Assistants. Without support I am unable to eat, drink, use the toilet or wash, I can’t write or reply to emails from friends. I should be enjoying the final years of my limited life but instead I am trapped inside my bungalow.”

Disabled people in the UK are in urgent need of adequate support to meet our most basic needs.

In jurisdictions where eligibility has widened beyond terminal illness, our peers are choosing to end their lives not because of pain but because they are not able to access support to participate and contribute to society.

There are also anecdotal reports of Disabled people being inappropriately offered, pressured or made to feel guilty by professionals because they are choosing to carry on living and not opting to kill themselves.[48]

We urge Parliamentarians to be on the side of real and meaningful choice – not only over the deaths of individuals who live with pain and distress but also over the right of millions of Disabled and older people to live.

 

For more information contact: mail@dpac.uk.net

 

Additional resources

Documentary

Better Off Dead? A documentary on assisted suicide, authored by actor and disability rights activist Liz Carr.

Journal articles and research

Assisted death in eating disorders: a systematic review of cases and clinical rationales – https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2024.1431771/full

Assisted dying: Quebec allows advance directives, defying federal ban – https://www.bmj.com/content/386/bmj.q2029

Euthanasia and assisted suicide in patients with personality disorders: a review of current practice and challenges – https://bpded.biomedcentral.com/articles/10.1186/s40479-020-00131-9

Oregon Death with Dignity Act access: 25 year analysis – https://spcare.bmj.com/content/early/2024/04/05/spcare-2023-004292

Psychiatric euthanasia, suicide and the role of gender – https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/psychiatric-euthanasia-suicide-and-the-role-of-gender/936B360C6B2AEF2CA5360357ED8CF020

Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined – https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-022-00599-6

The Dangers of Physician Assisted Suicide in Eating Disorders – https://static1.squarespace.com/static/58e4b708f5e2312cc949b8b4/t/66e828dde88bf757b8f0acc3/1726490860329/Assisted+Suicide+in+Eating+Disorders+Report+-+US+Version.pdf

Lived Experience

Canada – https://living-with-dignity.ca/remembering-lives-lived/

Media articles and press releases

Assisted dying/assisted suicide: Too many “complicating factors” to be safely implemented, says British public in new poll

https://www.bbc.co.uk/news/world-us-canada-68120380

https://www.chrc-ccdp.gc.ca/en/resources/ending-ones-life-must-be-a-true-and-informed-choice

https://www.dailymail.co.uk/news/article-14067911/Doubts-Assisted-Dying-Bill-grow-doctors-nurses-warn-added-pressures-broken-NHS-campaigners-insist-people-hope.html

https://www.hospiceuk.org/latest-from-hospice-uk/hospice-funding-falls-short-ps47m

https://www.independent.co.uk/news/world/americas/canada-euthansia-maid-gofundme-homeless-b2228890.html

https://www.kcl.ac.uk/news/65-of-adults-are-worried-about-access-to-palliative-care

https://www.politicshome.com/thehouse/article/alex-ruck-keene-kc-assisted-dying-parliamentarians-radically-unsupported

https://www.telegraph.co.uk/politics/2024/10/05/widen-access-to-assisted-dying-say-labour-mps/

https://www.telegraph.co.uk/politics/2024/11/09/assisted-dying-echr-discrimination-human-rights/

https://www.theguardian.com/news/2019/jan/18/death-on-demand-has-euthanasia-gone-too-far-netherlands-assisted-dying

https://www.theguardian.com/society/2023/jul/13/anorexia-right-to-die-terminal-mental-health

https://www.theguardian.com/world/2024/feb/25/canada-assisted-dying-laws-in-spotlight-as-expansion-paused-again

Position statements and briefings

Association for Palliative Medicine [APM] – https://apmonline.org/wp-content/uploads/APM-Position-Statement-on-Assisted-Dying-October-2024-v2.pdf

BMA – https://www.bma.org.uk/advice-and-support/ethics/end-of-life/physician-assisted-dying/physician-assisted-dying-survey

Joint Statement Against Assisted Suicide For Eating Disorders – https://www.eatbreathethrive.org/joint-statement-assisted-suicide

Reports

Report from the health and social care select committee inquiry into assisted suicide: https://publications.parliament.uk/pa/cm5804/cmselect/cmhealth/321/report.html

Written evidence submitted to health and social care select committee inquiry:

Professor of Palliative Care, Baroness Finlay

Professor of Health Care Ethics, Theo Boer

Ministry of the Solicitor General | Office of the Chief Coroner MAiD Death Review Committee Report 2024 – 3 2024 Navigating Vulnerability in Non-Reasonably Foreseeable Natural Deaths

Website

https://notdeadyetuk.co.uk/ The website of Not Dead Yet UK, a UK-based network who are part of a global alliance of disabled people, who oppose euthanasia and assisted suicide.

 

 

 

Disability activists call for support to live with dignity

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Oct 162024
 
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Disability activists are urging MPs to vote against legislation that would place disabled people under pressure to prematurely end their lives.

 

Kim Leadbeater MP’s Private Members’ Bill on assisted suicide is due for its First Reading in the House of Commons on the 16th October.

 

Deaf and Disabled People’s Organisations (DDPOs) fear that not enough time has been given to fully understand the far-reaching implications of the Bill.

 

Prime Minister Keir Starmer has allowed a free vote. Disability campaigners urge all MPs to vote against the Bill and instead focus on improving access to services, instead of assuming that an early death is the only way to provide dignity at the end of life.

 

In a briefing sent to MPs today, the ethical and human rights concerns of the legislation are outlined. These include the need for safeguarding against abuse, proper scrutiny of the Bill and fixing services, including palliative care, so that terminally ill people have a genuine choice at the end of life.

 

Evidence from around the world shows that initial good intentions to provide choice at the end of life can lead to disabled people without terminal illnesses being pushed to an early death because the support to live with dignity is not available.

 

Ellen Clifford, co-ordinator of the UK DDPO CRDP Monitoring Coalition said, “It is absolutely essential that Parliamentarians get to hear the voices of Deaf and Disabled People’s Organisations on this extremely complex and difficult subject. Parliament only gets one go at this and if they get it wrong the consequences will be very dangerous both for individual people vulnerable to abuse and society as a whole. Our support services – palliative care, the NHS, social care and mental health – are currently broken. We must not create a system like Canada where assisted suicide plugs gaps in services, or Oregon where young women with anorexia can end their lives before they find the support they need. The government must get on and fix the foundations so we all have the chance to live with dignity.”

 

Phil Friend, Not Dead Yet UK member said, “We have seen, again and again, across the world, that laws that begin with relatively strict parameters, such as terminal illness, expand and expand. While we are assured us there will be “safeguards”, in reality, these safeguards are virtually impossible to implement effectively. Even the idea that doctors can accurately predict when a person has six months left to live does not reflect reality.

 

“And in a world where there is growing awareness of coercive control, and where we know that many do not receive adequate or appropriate medical care, pain management or social care, we are creating the conditions for people to find themselves agreeing that yes, they should probably die, including to avoid feeling like a burden.

What if good care stopped us from wanting to die? Where are the proposed laws to provide everybody with compassionate and appropriate care instead?”

 

Campaigners highlight how disabled people’s lives are devalued in the UK, and fear that the legislation will exacerbate this.

 

Kamran Mallick, CEO of Disability Rights UK said, “As CEO of Disability Rights UK, I implore Parliamentarians to recognise the chilling echoes of the COVID-19 pandemic, where Disabled people were unjustly subjected to Do Not Resuscitate orders without their consent. These actions demonstrated a shocking disregard for our lives and autonomy, exposing the prevailing societal belief that Disabled lives are less valuable. Legalising assisted suicide would exacerbate these deeply concerning attitudes, normalising the idea that Disabled people are better off dead than living in a society that fails to provide adequate support.”

 

Joe Powell, Chief Executive of All Wales People First said, “All Wales People First stand in solidarity with Disabled People Against Cuts with their concerns regarding the proposed ‘assisted suicide legislation’. We are concerned that this legislation may impact on many people with learning disabilities because of misunderstandings about their quality of life. This was particularly evident during the Covid 19 pandemic when many people with learning disabilities were served, inappropriately  with do not resuscitate notices. This makes people with learning disabilities particularly vulnerable at this time.”

 

Dorothy Gould of Liberation said, “People given mental health diagnoses are already dying needlessly, because of a flawed service model and the use of disability-based detention in psychiatric institutions. If assisted suicide legislation is enacted, there is a very real risk that it will spread to us and that yet more of us will then die because we feel so hopeless about receiving the help we actually need”.

 

Disabled people fear that safeguarding against abuse is not possible and in the longer term, people who are not intended to be included in the scope of the legislation will find themselves without the support needed to live well.

 

Paula Peters from Disabled People Against Cuts said, “The proposed assisted dying bill about to be laid in Parliament causes deep concern and alarm for many disabled people.  It is impossible to put strong enough safeguards in place to prevent coercion and feeling that we have become a burden on our families and the state.  We fear that non-disabled people will be making choices about what is best for us and that our voices will be dismissed as they often are.

 

“This bill is a danger to disabled people’s human rights. Disabled people already feel devalued and we lack support to live life with dignity and have control and choice over our own lives.

 

“That there are many MPs who wish to widen the bill to include something as subjective as ‘incurable suffering’ is absolutely terrifying.  Give us dignity in life and allow us choice and control over our lives.”

 

Rhian Davies, chief executive of Disability Wales said, “Disability Wales opposes the assisted suicide private members bill. We acknowledge the lived experience of pain, suffering and distress on both sides of this debate nevertheless we are deeply concerned at the far-reaching implications of this bill both for individuals and society as a whole. Given the dire impact of austerity, Covid-19 and the cost of living crisis on disabled people including in Wales, we fear that this bill would further devalue disabled lives and undermine their very right to life.

 

“Disability Wales advocates for better support to ensure dignity and independent living, rather than offering assisted suicide as a solution to the challenges in the system that disabled people face daily.”

 

There are concerns that disabled people outside England and Wales could also be affected.

 

Michael Lorimer of Disabled People Against Cuts Northern Ireland said, “Although the Bill does not apply in Northern Ireland, the potential exists for people to travel to England and Wales. DPAC NI does not believe it is possible to ever safely legislate for assisted suicide. We do not accept that a Private Member’s Bill provides sufficient scrutiny for such a fundamental change. We call on our MPs to vote against the Bill and support the proper resourcing of services including palliative care.”

 

 

Editor’s notes:

The Deaf and Disabled People’s Organisations’ Coalition briefing on ‘Choice at the End of Life’ [ATTACHED]

 

The DDPO Coalition includes Alliance for Inclusive Education, All Wales People First, Disabled People Against Cuts, Disabled People Against Cuts Northern Ireland, Disability Rights UK, Disability Wales, Greater Manchester Coalition of Disabled People, Liberation, Omnibus Partnership.

 

Media contact: Ellen Clifford 07505144371; livingwithdignity@hotmail.com

 

END

Please fill in Parliament Survey on Assisted Suicide

 News  No Responses »
Jan 132023
 
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The Health and Social Care Committee has launched a new inquiry to examine different perspectives in the debate on assisted dying/assisted suicide.

The inquiry will explore the arguments across the debate with a focus on the healthcare aspects of assisted dying/assisted suicide. It intends to consider the role of medical professionals, access to palliative care, what protections would be needed to safeguard against coercion, and the criteria for eligibility to access assisted dying/assisted suicide services. MPs will also look at what can be learnt from international experiences.

Evidence sessions are expected to begin in the new year 2023. MPs will make their recommendations to the government on the next steps in a report following the inquiry.

We urge all of our supporters to contact their MPs to explain why the present law should be retained.

[Reposted from Not Dead Yet UK website]

 

SUBMITTING YOUR VIEWS

If you are an individual, you can let the government know your views by completing this online form. The responses will not be published but extracts from individual responses may be quoted anonymously in our report. An Easy Read version is available upon request, please email the Committee team on hsccom@parliament.uk.

If you are submitting on behalf of an organisation or as a researcher, or wish to make a detailed submission, you can submit formal written evidence through the portal.  Please make sure your written submission is no more than 3,000 words and addresses the terms of reference below.  Your submission does not have to answer every question; it can focus on as many or as few as you want.

  1. To what extent do people in England and Wales have access to good palliative care? How can palliative care be improved, and would such improvements negate some of the arguments for assisted dying/assisted suicide?
  2. What can be learnt from the evidence in countries where assisted dying/assisted suicide is legal?
  3. What are the professional and ethical considerations involved in allowing physicians to assist someone to end their life?
  4. What, if any, are the physical and mental health criteria which would make an individual eligible to access assisted dying/assisted suicide services?
  5. What protections could be put in place to protect people from coercion and how effective would these be?
  6. What information, advice and guidance would people need in order to be able to make an informed decision about whether to access assisted dying/assisted suicide services?
  7. What capabilities would a person need to be able to consent to assisted dying /assisted suicide?
  8. What should the Government’s role be in relation to the debate?

Terminology

The Parliamentary Office of Science and Technology briefing note on assisted dying defines the term as follows:

“Assisted dying refers here to the involvement of healthcare professionals in the provision of lethal drugs intended to end a patient’s life at their voluntary request, subject to eligibility criteria and safeguards. It includes healthcare professionals prescribing lethal drugs for the patient to self-administer (‘physician-assisted suicide’) and healthcare professionals administering lethal drugs (‘euthanasia’). It is an offence (in England and Wales) to assist or encourage another person’s suicide under section 2(1) of the Suicide Act 1961. Euthanasia is illegal across the UK under the Homicide Act 1957 and could be prosecuted as murder or manslaughter.”

 

ABOUT THE ISSUES

Not Dead Yet UK resources including Frequently Asked Questions and videos – Resources – Not Dead Yet UK

Article by Jamie Hale in The Guardian – We are told we are a burden. Legalising assisted suicide would further devalue our lives | Jamie Hale | The Guardian

 

Assisted Dying Bill will harm disabled rights

 Assisted Dying Bill  No Responses »
Oct 222021
 
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Copy of letter that appeared in today’s Daily Telegraph:

SIR – We are from different political backgrounds but are united in our opposition to the attempt to change the law on assisted dying.

Baroness Meacher’s Bill would disproportionately threaten disabled people, question the value of our lives and suggest that assisted suicide is an option we “should” be considering.

Rights groups have long been concerned about pressure being put on disabled people to end their lives prematurely for fear of being a personal or financial burden on loved ones.

The legal, medical and social implications of the Bill for disabled people are enormous. They need to know that doctors are obliged to do all they can to help everyone to live a good life. The current law keeps unconscious discrimination and social bias towards disabled people in check.

Supporters of the Bill neglect to mention that none of the leading disability rights groups support a change in the law. Given Covid’s disproportionate impact on disabled people – 60 per cent of deaths – it is crucial that protection is strengthened. This Bill would weaken it, with fatal unintended consequences. We urge our colleagues to oppose the Bill.

Baroness Campbell of Surbiton (Crossbench)
Baroness Grey-Thompson (Crossbench)
Lord Shinkwin (Con)
London SW1

Online Parliamentary Seminar on Legalisation of Assisted Suicide – 15 July 5pm

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Jul 142021
 
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The APPG on Dying Well promotes access to excellent palliative care and stands against the legalisation of assisted suicide in the UK. 

I am delighted to invite you to our next online meeting on the 15th July at 5pm.This is an unmissable event and first of its kind, which will be of interest to parliamentarians with a range of expertise. Especially those with interests in science and technology, medical innovation, mechanical engineering, human ethics and philosophy. 

Three presenters, all of whom are disabled, will consider Baroness Meacher’s Assisted Dying Private Members Bill from very different perspectives and viewpoints. Each presenter will test the arguments for a change in the current law and whether the proposed legislation stands up to rigorous public safety standards. 

Dr Peter Scott Morgan http://www.scott-morgan.com/blog/right-to-thrive/faqs-about-right-to-thrive/. Peter is the world’s leading robotics and AI scientist who was diagnosed with the severest form of MND ALS and given 2 years to live. 4 years later, Peter will show-case his new inventions and solutions which challenge commonly held beliefs regarding terminal Illness. Amongst them he will demonstrate a sophisticated avatar, which has given him his voice and expression back, having lost this capability a year ago when he became motionless as a result of MND. His work is gaining great traction globally as a result of his recent book, documentary and 2020 launch of the Scott Morgan Foundation: https://www.scottmorganfoundation.org/our-story.  

Dr Mario Griffiths https://en.wikipedia.org/wiki/Miro_Griffiths. Miro is a Leverhulme Research Fellow at the University of Leeds, who has published on disability policy and politics, and is invited regularly to comment on current social issues. He is a member of the Disability Advisory Committee at the Equality and Human Rights Commission, and advises the UK Department of Health and Social Care on improving disabled people’s access to health and social care provision. He is a former strategic and confidential adviser to the UK Government and European Commission. Miro has Spinal Muscular Atrophy, which is a progressive condition that causes muscle strength deterioration throughout the body. 

Philip Friend OBE Hon DSc https://philfriend.co.uk/. Phil contracted polio as a child and is a wheelchair user. He is acknowledged as one of the UK’s foremost consultant on disability matters. He has worked on disability and diversity projects in Estonia, Romania, Poland, Germany, Canada and the USA. He was awarded an OBE in 2001 for services to equal opportunities and disabled people and made an honorary Doctor of Science (Hon DSc) in 2009 in recognition of his outstanding contribution to equality and diversity from University of Hertfordshire. He is the current chair of the Research Institute for Disabled Consumers and Vice Chair of the Activity Alliance.  

Baroness Campbell of Surbiton http://baronesscampbellofsurbiton.uk/. Baroness Campbell of Surbiton is a Cross Bench Peer and Founder of Not Dead Yet UK (NDYUK) www.notdeadyetuk.org. NDYUK is the leading organization of disabled people and those with a diagnosed progressive and terminal medical conditions campaigning against a change in the law on Assisted Suicide.

To register for a place please email: danny.kruger.mp@parliament.uk

“When Assisted Death is Legal”

 All Posts, Assisted Dying Bill  4 Responses »
Jul 052015
 
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In 2012, thanks to an award from The Winston Churchill Travelling Fellowship, disabled actor and activist Liz Carr travelled to the then five countries where assisted suicide and/or euthanasia are legal ie Belgium, The Netherlands, Switzerland, Luxembourg and in the USA, Oregon and Washington State.  (Assisted suicide is now also legal in the US state of Vermont and in Canada).

 

Liz is opposed to the legalisation of assisted suicide and wanted to discover for herself how these laws work in practice and how, if at all, their existence changes the culture of a country.  She shares her discoveries in a two-part BBC World Service radio documentary entitled, “When Assisted Death is Legal” and which is available to listen to here: https://www.bbc.co.uk/programmes/p014dkq5

 

In under an hour of listening time, these programmes provide important new information and perspectives on this most difficult of topics.  For example:

 

* In Luxembourg, Jean Huss and Lydie Err, who co-sponsored the Assisted Suicide and Euthanasia Bill 2012, admitted they were disappointed in the law because they said it failed to include children and those with dementia.  When I asked why these groups were not included in their law, they said that they knew it was easier to pass the law initially for terminally ill people only and then, once passed, to increase the law’s application.

 

* In Oregon, where the law is the blueprint for the Assisted Dying Bill currently before you in the House of Lords, the 2013 statistics reveal that pain is infact not one of the main concerns of people requesting assisted suicide.  Instead, the three main reasons are loss of autonomy (93%), decreasing ability to participate in activities that make life enjoyable (88.7%) and loss of dignity (73.2%).  By comparison, inadequate pain control or concern about it was one of the least important concerns at 28.2%.

 

*  Since this documentary was produced, Washington State’s 2013 annual report has shown that 61% of all those who were supplied lethal drugs in order to commit suicide listed the feeling of being a burden on family, friends or caregivers as one of their main reasons for their request.

 

* In Switzerland, assisted suicide has been legal since the late 1800’s and one of its most stringent safeguards is that each case is investigated by the police

 

* The Netherlands are currently debating something called ‘Completed Life’ which would legalise assisted suicide for those 70+ who are tired of life

 

* In the first 10 years since the Belgium Euthanasia law was enacted, there has not been one case of abuse reported.  Is this because there have been no abuses (the BMJ reported in 2010 that only half of all euthanasia cases are properly reported) or because, as in most other countries, reporting and monitoring are self-regulatory?

 

Liz’s personal conclusion is that the risks to the safety and wellbeing of the majority should continue to outweigh the individual needs of those who want an assisted suicide.  She hopes you agree and will vote ‘no’ to the Assisted Dying Bill.

Defeating the Assisted Dying Bill: why we must

 Action, All Posts, Assisted Dying Bill, Events  3 Responses »
Jul 052015
 
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Wolverhampton South MP Rob Marris’s Assisted Dying Bill is going to be debated and voted upon in what’s known as it’s Second Reading in the House of Commons on September 11th.  This is the first time in 18 years that MPs will have had the chance to vote on an assisted suicide (AS) law.

 

We want to make sure that MPs vote ‘NO’ and kill the bill on September 11th. see also info about the lobby on 14th July

 

We need to talk to our MPs about our fears and concerns about such a bill, to find whether they’re for or against it and if the latter, we desperately need them to attend on 11th September to vote against this bill.

 

This information sheet is the legal one.  It details the current legal situation and looks at the details of these assisted dying bills.

 

The current situation

 

Those of us who oppose a change in the law, believe the current situation is adequate.  Under the 1961 Suicide Act, killing yourself is not illegal but encouraging or assisting another person’s suicide is and can lead to up to 14 years imprisonment.  The current law acts a deterrent to malicious or manipulative assistance with suicide.

 

But the Director of Public Prosecutions (DPP) also has a discretion not to prosecute if, for example, it is clear that assistance has been given reluctantly / after serious soul-searching or for ‘wholly compassionate’ reasons to ill or disabled people.  It is this discretion that has allowed the high profile assisted suicide cases to avoid prosecution.

 

There are a list of factors considered when deciding if the law has been broken but in reality, if a person has made it clear that they want to end their life by an assisted suicide for health / impairment reasons and a friend or family member aids them (as opposed to a medical professional) then whilst they may be investigated, it is unlikely that they will be prosecuted.  Infact less than 20 cases a year throughout the whole of England and Wales cross the desk of the DPP and few of them call for prosecution.  And yet apparently this law isn’t working?

 

But laws send out messages – when something is legalised, it acquires the stamp of social approval.  An assisted suicide law says, in effect, that if you are terminally ill, ending your life is an option that it is appropriate to consider.

And by putting assisted suicide into the hands of the medical profession, it’s feared it could become a treatment option.

 

Critics of the current law say that it’s unfair for families and friends to have to help an ill or disabled person to end their lives and not know in advance whether or not they’ll be investigated and charged.  We say the illegatlity of the assisted suicide acts as a deterrent and ensures it is not the easy option.

 

Supporters say that because it’s not currently legal for a Dr to assist, that people have to kill themselves with amateur means which may fail.  We say that everyone has the means to commit suicide and why should ill / disabled people be given a 100% successful method when over 90% of suicides for everyone else actually fail?

 

They say that dying people may have no choice but to take themselves off to somewhere like Dignitas before they’re ready to die but while the person is still well enough to travel – and that travelling to Dignitas is costly and difficult for those involved.  We say that rather bringing assisted suicide to the masses and make it an easy option,  that there should be improvements to end of life care for all people to ensure everyone can have a peaceful and pain free end to their life.

 

Supporters say they want the right to die.  We believe the right to die already exists for each and every one of us. What those wanting a change in the law are actually asking for is the right for someone else to kill them.

 

Instead of a discretionary power where very few assisted suicides are ever prosecuted, supporters of a change in the law want to lay down in advance, the situations when it is okay for a Dr to assist a person to end their life.  We say the law as it is enables the choice of a few whilst protecting the many.

 

What’s in the Assisted Dying Bill?

 

At the time of writing the text of the Marris bill is unknown but it’s likely that it will be very similar to the Lord Falconer Assisted Dying Bill that Not Dead Yet UK protested against in the previous Parliament. (Lord Falconer has also re-introduced his Assisted Dying Bill into the House of Lords so even if we defeat the Marris Bill in the Commons, we will still have to contend with Falconer at some point in the future!).  Firstly they’re calling it an assisted dying and not an assisted suicide bill.  They say it’s because it’s only for those who are actually dying but we say it’s to make the term more palatable, after all, the current campaigning group Dignity in Dying used to be called the Voluntary Euthanasia Society.

 

If passed, the ‘assisted dying bill’ would license doctors to supply lethal drugs to:

  • terminally ill patients with less than 6 months to live and who have,
  • a settled intent to end his or her life
  • the capacity to make such a decision and
  • are making the request voluntarily, on an informed basis and without pressure or duress

 

Two doctors are required to certify that these criteria have been met and their decision is to be referred to a judge of the High Court for confirmation.  There is no requirement for a psychological assessment to assess capacity.  The doctors do not have to be your regular doctors.  If approved, the person would be supplied with the lethal drugs to enable them to commit suicide.

A medical professional (but not necessarily a doctor) would remain with the person until they died but they cannot help them to take the drugs – to do so would cross the line between assisted suicide and euthanasia.

 

Many people who support this bill believe it is to assist those who cannot kill themselves to have the same opportunity as everyone else but in fact, if someone cannot physically ingest or do the final act themselves would not technically come under this bill.

 

The proposed law – unsafe to change

 

Critics of the bill are meant to be reassured by ‘safeguards’ to protect ‘the vulnerable’ from abuse – and ultimately murder.  So what safeguards exist to protect someone from being killed without their fully informed consent?

 

The proposals list a number of qualifying criteria for assisted suicide – such as settled intent, capacity to make the decision and freedom from pressure – but they do not translate these criteria into concrete safeguards.  Instead, they

propose that these issues should be dealt with by the Secretary of State in codes of practice AFTER Parliament has agreed to change the law.  SO MPs don’t even know the full extent of what they’d be voting for on September 11th. In effect, the issue of safeguarding has been side-stepped and Parliament is being asked to sign a blank cheque.

 

After concern about lack of safeguards was raised when the House of Lords debated the Assisted Dying Bill, Lord Falconer added a proposal that when a doctor assessing a request for assisted suicide considers that it meets the designated criteria, the decision should then be referred to a judge of the High Court for confirmation.  The bill does not, however, require the Court to undertake any investigations of its own and as such, the role envisaged for the Court is little more than that of a rubber stamp.  It is expected this will also be included in the Marris Bill.

 

Many aspects of a request for assistance with suicide go beyond a doctor’s professional competence.  It may be fair to ask a doctor to confirm that a patient is terminally ill, to offer a prognosis and to advise on possible treatments.  But most doctors are in no position to judge whether a request for assistance with suicide derives from a settled wish or whether there are any pressures operating in the background that could be influencing the request.  In today’s world of busy multi-partner GP practices and declining home visits doctors often know little of their patients beyond what they pick up in the consulting room and they do not have the time or resources to set about investigating such matters.

 

The Oregon Experience

 

The Oregon Death with Dignity Act has been the blue print for the Falconer Bill and will be no doubt for the Marris Bill too.  Here are some of the problems with the Oregon law:

 

  • Individuals seeking assisted suicide can resort to doctor shopping- visiting doctor after doctor until one agrees to write the lethal prescription.

 

  • Patients are often misdiagnosed as terminally ill with less than 6months to live when in fact they live for months and even years beyond what was originally expected.

 

  • Individuals with a new illness or disability are often faced with depression, which requires more than Oregon’s 15 day waiting period to be treated.

 

  • Many patients experience outside pressure to commit assisted suicide, which often goes unnoticed and unpunished.

 

  • Individuals are often portrayed as a burden on their families and are made to feel that their life is not as valuable.

 

  • In 2007, none of the individuals that requested assisted suicide in Oregon were referred for a mental health evaluation.

 

  • Under Oregon law, depressed or mentally ill individuals can still be considered “competent” to request assisted suicide.

 

  • Under Oregon law, doctors that fail to report or file incomplete or inaccurate reports face no penalties.

 

  • All records are sealed and all underlying data is destroyed after the annual report is published.

 

  • The 2013 Oregon statistics reveal that the three main reasons given for requesting an assisted suicide are loss of autonomy (93%), decreasing ability to participate in activities that make life enjoyable (88.7%) and loss of dignity (73.2%).  By comparison, inadequate pain control or concern about it was one of the least important concerns at 28.2%.

 

  • Assisted suicide is also legal in Washington State. The 2013 annual report has shown that 61% of all those who were supplied lethal drugs in order to commit suicide listed the feeling of being a burden on family, friends or caregivers as one of their main reasons for their request.

 

  • 64 year old Barbara Wagner was diagnosed with metastatic lung cancer. Her oncologist prescribed chemotherapy to slow cancer growth, reduce symptoms, and extend her life.  The Oregon Health Plan however would not cover the costs for her chemotherapy prescription, but sent her a letter saying they would instead pay for assisted suicide drugs.

 

 

Against Child Euthanasia in Belgium? Please Sign the Petition!

 Action, All Posts  2 Responses »
May 142014
 
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More and more terrible evidence is emerging of what is really happening under the guise of Belgium’s euthanasia law. So we are calling on the Belgian Parliament to suspend its law permitting euthanasia and to conduct a full and transparent review of the practices carried out in its name.

If you agree that Belgium should suspend the practice of euthanasia until more information is available about what is really going on please sign our petition to the Belgian Parliament.

Background information

Belgium’s euthanasia law has now been extended to children of any age. Children under the age of eight barely have a concept of death and many teenagers especially if they are in a typically ‘rebellious’ frame of mind might not have a real grasp of the consequences of their actions.

Evidence now shows that older people with dementia are being euthanized in Belgium even though there can be no question of someone with dementia giving full and informed consent to their deaths.

 

There are other illegal practices happening in Belgium such as nurses performing euthanasia – and massive failure to report by doctors carrying out euthanasia (in 47% of cases). The leading euthanasia doctor in Belgium is also the president of the commission which is supposed to regulate the practice of euthanasia. This is a clear conflict of interest. He has had a complaint against him after he euthanized a depressed mother with no other illness.

Belgium saw a five-fold increase from 235 in 2003 (the first full year) to 1,432 in 2012.

The country is increasingly known not just for the steady annual rises in deaths, but also for the increasing proportion of deaths not prompted by terminal illness, including the notable 2013 cases of deaf-blind, transgender and depressed people being euthanized.

We are calling on the Belgian Parliament to suspend its law permitting euthanasia and to conduct a full and transparent review of the practices carried out in its name.

The link to the petition run by the Euthanasia Prevention Coalition Europe is HERE 

Given that the assisted suicide Bill is soon to return for another reading at Westminster we urge all to make your feelings known about the impact of unlawful killing by any name in this country, and in others.

follow EPCE on twitter:

twitter: @epceurope