The Terminally Ill Adults (End of Life) Bill: A Dangerous Erosion of Transparency and Scrutiny

The recent conduct of the committee looking at the assisted dying bill raises serious concerns over privacy, transparency, and the risks of ignoring international expertise and ethical safeguards

CONSCIENTIOUS CURRENCY

The debate surrounding the Terminally Ill Adults (End of Life) Bill, often referred to as the Assisted Dying Bill, has sparked significant controversy – you can read my first article on this subject, shown below, if you are new to it. Some argue that this bill should more accurately be called the Euthansia Bill, as it involves the legalisation of euthanasia, a far more drastic measure than assisted dying – which we actually already have in the form of palliative care.


The Illusion of Freedom: How Assisted Dying Frames Choice and Despair

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8 December 2024
The Illusion of Freedom: How Assisted Dying Frames Choice and Despair

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The Assisted Dying bill has passed its second reading. For some, this is a moment of profound joy—Esther Rantzen, for instance, was “thrilled”—but for others, it is nothing less than heartbreaking. It is worth reflecting on the irony here: the same Esther Rantzen who once feared death during the “COVID pandemic” so deeply that she proposed the unvaccina…

The Terminally Ill Adults (End of Life) Bill is currently at the committee stage in the UK Parliament. This stage is supposed to involve a detailed examination of the bill, where it is scrutinised line-by-line, with full public transparency. During this stage, the committee hears evidence from various witnesses and considers any proposed amendments. The committee has already agreed on its sitting dates and will start considering the provisions of the bill clause-by-clause from early February. The goal is to conclude the committee stage by mid-April, allowing the bill to move to the report stage in the House of Commons.

On 20th January 2025, Kim Leadbeater, sponsor of the bill, proposed a motion to hold parts of the committee’s sittings in private. Specifically, she argued that it would be inappropriate to discuss which expert witnesses would be called in a public forum, as it could “compromise their privacy.” In other words, she wants the discussion about what experts should help to scrutinise such a bill of profound importance, and how the decision to engage the same was dealt with, to be conducted behind closed doors. As highlighted in our Telegram post on 22nd January, private sittings mean “the public must leave, nothing is broadcast, and there is no transcript of minutes.” This approach undermines the very transparency that is essential to public trust for this bill.

The committee’s actions as regards ‘privacy’ highlights the dangers of withholding critical information from the public regarding new laws being proposed. In this case, the committee’s conduct, thankfully, led to arguments put forth by MPs, those in clinical practice, (see below), and the public at large, all concerned that a lack of openness from the commitee threatens to undermine a fair and thorough examination of this bill. Simply put, without full and open scrutiny, there is a risk that this bill could pass into law without properly addressing all of the profund ethical, medical, and legal complexities connected to this issue.

Perhaps the most alarming move by Leadbeater and her committee came on 21st January 2025, when the latter voted 14 to 8 against hearing oral evidence from the Royal College of Psychiatrists (RCPsych). This decision was particularly troubling given RCPsych’s long-standing concerns about the risks of coercion and the adequacy of consent in assisted dying cases. Whilst I am not typically a supporter of RCPsych or psychiatrists in general, their concerns about the bill’s potential dangers deserve attention:

  1. RCPsych questions whether it is possible to reliably assess a person’s capacity to decide to end their own life. They emphasise the complexity of determining whether a person can make such a profound decision, especially when mental health issues are involved. I have already explained many times how capacity is assessed in this country, but it is worth repeating that capacity is defined in accordance with the Mental Capacity Act 2005 (MCA). Whether (or not) a person has capacity is a legal determination made at a specific point in time for a particular intervention – the time and function specific test. Given that it is another person that assesses someone for mental capacity, these assessments can vary wildly from assessor to assessor and hence can operate with wide margins of error. Further, a person’s capacity can fluctuate over the course of a given day or can vary greatly depending on their stress levels. There may also be other physical factors that affect capacity as well as medications that interfere with the same.
  2. The College is concerned about whether consent can serve as an adequate safeguard against coercion. They worry that vulnerable individuals might be pressured, either directly or indirectly, into choosing assisted dying. On their website they clearly state, (and I agree with their comments), that: “The Bill focuses on external coercion. That is, for example, coercion from family members with personal or financial motivations to hasten death. While this type of coercion may not always be clear, internal and societal pressures that may reach the threshold of coercion can be even more difficult to detect. This Bill does not address these more subtle forms of coercion such as where a person may internalise a feeling of being a burden to others. How might such internalised pressure be identified or responded to in this context? At what level would implicit or internal pressures amount to coercion? At what point would supporting a person to have capacity to make a decision to request assistance to die constitute coercion?”
  3. RCPsych highlights the potential implications for individuals with mental disorders, intellectual disabilities, and neurodevelopmental conditions. These groups often face barriers to accessing palliative care and may be more susceptible to coercion.
  4. The College is concerned that the introduction of assisted dying legislation could undermine suicide prevention efforts. They argue that it is crucial to consider how such laws might affect broader public health initiatives aimed at preventing suicide.
  5. RCPsych believes that the details of how to protect vulnerable individuals should not be left to professional codes of practice, but should be explicitly addressed in the legislation itself.

It is also worth noting that RCPsych conducted a survey of their members in England, Wales, Northern Ireland and the Crown Dependencies. Respondents were asked whether they consider assisted dying to be a medical treatment option. Over half (57.0%) of respondents thought it was not, while 32.2% thought it was. Over half (54.5%) of respondents also said they did not believe that such a ‘service’ should be provided by the NHS.

Kim Leadbeater was heavily criticised for her late motion for committee privacy and many people were rightly profoundly disturbed that oral evidence from the Royal College of Psychiatrists was not going to be heard, particularly as psychiatrists that work in the geriatric field could well be called upon to undertake capacity assessments for ‘candidates’ for euthanasia in the future. Social media was ablaze with criticism from campaign groups, some MP’s, and the public at large. Even some committee members publicly argued that there was a clear public interest in making open decisions about expert witnesses and argued that the public should understand why certain witnesses were chosen and others were not.

In a final blow to any transparency and proper scrutiny of the bill, the committee also decided **not to hear from Canadian experts** on their experience with assisted dying because ‘they feel that the UK context and healthcare system are significantly different from Canada’s’. What a ridiculously weak and non-sensical argument! Whilst there are indeed differences between the UK and Canada’s healthcare systems, the core principles and challenges of assisted dying legislation are still comparable – for example, issues related to consent, coercion, and the impact on vulnerable populations are universal concerns that can be informed by international experiences. The failure to engage with international best, (and indeed worst), practices therefore further exacerbates the perception that this bill is being rushed through with minimal consideration for its long-term consequences.

Philip Murray, law lecturer had this to say about the whole stinking debacle:

Adrain Hilton posted this:

Henry Hill chimed in with this:

Sergei Gonzalez, psychiatrist, stated:

Care Not Killing were furious and posted:

Danny Kruger MP posted:

Thinking Slow had this to say, (and I highly recommend the article mentioned in the post which you can find here):

Thankully the decision not to take evidence from the Royal College of Psychiatrists has now been reversed. But this is only because of significant criticism of, and backlash against, their initial exclusion. Can you imagine what would have happened if those of us in the public with an eye on this had not created such uproar? So, yes, whilst this reversal could be seen as a positive step towards ensuring that relevant expert opinions are considered, I do hope that people will remember that the committee very much tried to shut down any input from the Royal College of Psychiatrists, who do actually want to properly debate the very serious ethical, medical, and legal concerns connected to this bill.

In my opinion, the developments of the last few days do nothing to inspire confidence in this committee and only add fuel to the fire that this bill becoming law is a fait accomplit. The committee’s reluctance to allow full transparency, particularly regarding comparisons with other countries’ experiences with assisted dying laws, is shocking. And the argument for privacy is completely at odds with the need for full openness in the legislative process, especially for a bill that deals with such weighty matters as life and death.

As already noted, various MP’s have spoken out against the lack of transparency from the committee, stressing that the absence of open debate will only fuel mistrust among the public. Committe member Danny Kruger has pointed out that “privacy concerns should not be used as a smokescreen to prevent the public from having access to the facts and arguments that will shape this pivotal decision.” Kruger’s concerns are echoed by others, who have, along with him, also raised alarms over the committee’s refusal to hear from external experts, particularly those from Canada, whose experience with assisted dying is much more developed than the UK’s. Kruger has emphasised that “Canada’s experience provides invaluable insights into the potential consequences of assisted dying laws—both positive and negative. To ignore that experience is to invite unnecessary risks.”

Canada has had a legal framework for medically assisted death (MAiD) since 2016, and it has been implemented in several provinces, providing a valuable case study for lawmakers considering similar legislation. One of many concerns raised by critics of assisted dying in Canada is that the safeguards designed to protect vulnerable individuals are not effective. Various investigative reports in Canada from CBC and other’s have revealed that some patients eligible for MAiD have not received adequate assessments to determine their capacity to make informed decisions, and that poverty, not pain, is actually the driving force behind their ‘decisions’ to die. These reports raise questions about whether vulnerable individuals, particularly those with mental health conditions, might be at risk of coercion or making decisions under duress.

The UK committee’s refusal to hear from experts on the Canadian system is perhaps the most serious of the transparency issues we currently face in this matter. It is almost like the committee do not want the UK public to know how and why it has gone so very wrong in Canada. Why? Because I am damn sure that if the public did know all the awful Canadian stories, they would very much be against the further progress of this bill.

The profound implications of assisted dying are complex and multifaceted, and the committee’s reluctance to hear from various experts, including international ones, raises concerns about whether these implications are going to be adequately addressed, or instead, purposefully ignored. The call for privacy from the committee – which is nothing other than the absence of transparency – in some of their deliberations, also indicates that the important ethical, moral, and legal issues arising from this bill are not going to be given the public attention that they deserve. And I would remind all those reading this article that the bill as on the table contains a Henry VIII clause allowing for executive amendments in the future without any further scrutiny of such amendments at all.

Just a few of the ethical and other questions surrounding this issue that should be debated openly and publicly, and which the general public need to be made aware of, include:

  1. Autonomy vs. Vulnerability: The principle of autonomy—the right of individuals to make decisions about their own lives—is central to the argument in favour of assisted dying. However, not all patients are able to make fully informed decisions, particularly those who are suffering from depression, chronic pain, or other mental health conditions.
  2. Slippery Slope: Legalising assisted dying could pave the way for broader eligibility criteria over time, leading to the normalisation of euthanasia for individuals who are not terminally ill. This concern has been raised in countries like Belgium and the Netherlands, where laws have been expanded to include people suffering from conditions like chronic pain or psychiatric disorders.
  3. Protection of Vulnerable Populations: Vulnerable populations, such as those with disabilities, may be at risk of being coerced into choosing assisted death, particularly in the context of societal pressures or inadequate healthcare systems.
  4. Assisted dying can, and does, go wrong: The UK public need to understand what has happened in Canada and other countries where this practice has been legalised for some time, and there needs to be full and frank disclosure and discussion about how Canada, in particular, has got to where it has on this issue.

As this debate rages on, it is of fundamental importance for the committee to urgently reassess its approach to privacy and transparency. A bill of this magnitude requires full examination, both in terms of its ethical, moral, and legal implications, as well as its potential impact on society. If the committee is serious about effective scrutiny, it must embrace transparency, invite diverse perspectives, and make a concerted effort to consider all the potential ramifications—including all the negative ones – otherwise the committee will be seen as nothing other than an exercise in gerrymandering, or in more common parlance ‘a complete stich up’. Then again should we expect anything else from the woman who said this:

The committee should also review official figures from one of the government’s own departments – the DWP – as published in this Telegraph article which states: “Terminally ill patients given six months to live often survive for three years, official figures have revealed, fuelling fresh concern over assisted dying becoming legal. The disclosure, made under freedom of information laws, prompted palliative care medics to warn lives will be “tragically cut short” if Kim Leadbeater’s assisted dying bill becomes law”.

Perhaps at the end of the day, the truth about what is really going on is as simple, and dystopian, as what is heard from Kit Malthouse – saying the quiet part out loud – when he seemingly states that current palliative support for the terminally ill is ‘costing the taxpayer too much money’ – so I guess we should just let people be euthanised by the NHS then! That being the case, we should all wake up and smell the coffee and start making plans to do our level best to stop the passage of this dangerous bill that could very well have catastrophic consequences in the future. Let’s start valuing life and caring and supporting those that need it the most. Not consigning them to death by lethal injection and praising the tax savings arising therefrom!


Other Relevant Articles and Resources:

  1. The Slippery Slope of Assisted Dying: Lessons from Belgium and the Netherlands
  2. The Ethical Dilemmas of Assisted Suicide and Euthanasia
  3. Madeline Grant – Kim Leadbetter has stacked the deck in assisted dying

Other Social Media Posts:

This article (The Terminally Ill Adults (End of Life) Bill: A Dangerous Erosion of Transparency and Scrutiny) was created and published by Conscientious Currency and is republished here under “Fair Use”

Featured image:www.kcl.ac.uk

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