Briefing: Terminally Ill Adults (End of Life) bill

Jun 182025

UK Deaf and Disabled People’s Monitoring Coalition

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 report stage.

Many of our concerns echo those voiced by the Royal College of Psychiatrists, Royal College of Physicians and Association of Palliative Medicine.

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 was months of engagement prior to introducing the bill and for the Human Embryology and Fertilisation Act, there was the Warnock Commission.

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 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 ally 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.

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. 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 months later. 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.

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 as the same as used for death row prisoners and have been linked to, for example, experiences of dry drowning. The bill impact assessment says the “safety and efficacy” of substances used for assisted dying is “currently difficult to assess”.

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. 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. 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.

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.

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 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 been 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.

Defeating the Assisted Dying Bill: why we must

Action, All Posts, Assisted Dying Bill, Events 3 Responses »

Jul 052015

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 11^th. 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 11^th. 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 11^th 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 11^th. 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.