Terminally Ill Adults (End of Life) Bill

Caroline Johnson Excerpts

Friday 13th June 2025 Commons Chamber

[Patricia Ferguson]

My hon. Friend makes a valid point. The point of my amendment, as I will come on to, is that we need to ensure as much scrutiny as possible in this regard.

From what I have outlined, this is clearly an exceptionally important post, which carries great responsibility and significant power; indeed, it seems the postholder will require the judgment of Solomon to be able to fulfil their role. It is therefore surprising that, as the Bill stands, there is no requirement for pre-appointment scrutiny by the relevant Select Committee, despite the profile of the post and the controversy it will inevitably attract.

Considering that such pre-appointment scrutiny is required for the chair of the Competition and Markets Authority, the chair of the BBC, the chair of the Charity Commission, the Information Commissioner, the chair of the Care Quality Commission, the health service commissioner for England, the chair of the Judicial Appointments Commission and the chair of the UK Statistics Authority, the omission of such scrutiny in this case is clearly a serious oversight, which my amendment seeks to remedy by ensuring that the correct Select Committee has the power of scrutiny.

In my view, we need to guard the rights and privileges of Parliament jealously. We must ensure that Parliament is involved in the scrutiny of this legislation going forward as much as we possibly can. The Bill itself requires this to be as rigorous and transparent as is possible. No matter what side of the debate we are on, it is important to ensure that the Bill is as strong and as good as it possibly can be; we owe it to the people who send us here—the people who have been writing to us in such great numbers. My amendment seeks to strengthen the Bill in respect of the voluntary assisted dying commissioner.

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

I refer right hon. and hon. Members to my entry on the Register of Members’ Financial Interests—I am an NHS consultant paediatrician.

The debate so far has focused primarily on ethical considerations, legal frameworks and who will be eligible—the who, the when and the why—but I want to focus my remarks on the how. As a doctor, I know that various drugs in different combinations can be fatal; in other words, there is more than one way to kill people. Which would be the best drug, if that is what we wished to do? Which would be the most comfortable, and how do we know?

Some forms of assisted dying use neuromuscular blockades, which, in common parlance, means that they paralyse the body. Imagine a situation where someone in a lot of pain is given such a drug; from the outside they would look relaxed and peaceful as their muscles relaxed, but inside they would be in a lot of pain, and unable to express that to anybody else. Do we want people to be comfortable and to know that they are comfortable, or only to appear comfortable to us? Clearly, we want them to be comfortable inside as well. We therefore need to have drugs that are properly understood and regulated for this purpose.

Assisted dying is often portrayed as safe, peaceful and controlled, but the reality in comparable countries where it has been legalised so far is more complicated. Technical difficulties frequently arise, leading to complications causing greater suffering, requiring intervention and potentially leading to a prolonged and painful death.

A report in The BMJ by Dr Suzy Lishman, former president of the Royal College of Pathologists—who, I should say, works at the same trust as me—showed that there is a lack of reliable data on the effectiveness and safety of the drugs used, largely due to inconsistent reporting in jurisdictions where such dying is legal. In Belgium it is estimated that only 52% of euthanasia cases are reported to the Federal Commission for the Control and Evaluation of Euthanasia.

During a Select Committee visit in the last Parliament to Oregon to discuss assisted dying, which I and two other hon. Members from the Labour Benches went on, we heard about the complications being unknown in 71% of cases. No healthcare professional was present when the drugs were given so we could not really know, and we did not even know if the drugs had been taken in some cases. Where we did, we found a history of seizures, vomiting and prolonged deaths. On having been given the drugs, patients in nine cases in Oregon in 2023 had reawakened later. How they felt in the intervening time is difficult for us to know.

In Washington, a 2018 report found that 31% of patients took more than 90 minutes to die. I also remind hon. Members that an absence of evidence that things are not going well is not evidence of an absence of things going wrong.

[Anna Dixon]

I thank the hon. Lady for so eloquently describing some of the variation in the use of drugs in the case of assisted dying. In normal practice we have a yellow card scheme, which allows for any adverse events from ingestion of prescribed medication to be reported. Is it her understanding that, under the current proposals, that would not happen for assisted dying? Is she also aware of a review that shows a great variation in the range and dosages of drugs used?

[Dr Johnson]

I think one of the key problems with this form of intervention, compared with others, is that we cannot ask the patients afterwards how that felt. We cannot get their feedback, because they are dead. If we are going to give them things such as neuromuscular blockers or sedatives, we may not be able to tell what they feel. There are physiological ways in which we can monitor patients and get some idea—perhaps in their heart rate or blood pressure—but we will not be doing that. That is, therefore, one of the reasons for my tabling the amendments, to ensure that the drugs are properly regulated by the MHRA, so that we know that they have been properly tested on the purpose for which they are to be used.

[Sadik Al-Hassan]

Will the hon. Lady give way?

[Lizzi Collinge]

Will the hon. Lady give way?

[Dr Johnson]

I do not have much time and I do not want Madam Deputy Speaker’s cough to return. [Laughter.]

If one examines the litany of drugs involved in other jurisdictions where assisted dying is legal, it makes for troubling reading. It is often an ad hoc cocktail of lethal substances, including sedatives, analgesics, cardiotoxic agents, neuromuscular blockers and antiemetics. There is no internationally agreed drug regime. Jurisdictions such as Oregon, Canada and the Netherlands use varying combinations of barbiturates, sedatives, opioids and antiemetics. In 2020, the official Oregon report stated that, compared with single barbiturates,

“All drug combinations have shown longer median times until death”.

As the Bill currently stands, doctors will have to consider prescribing untested drugs or drug combinations, which could potentially breach the General Medical Council prescribing guidance that a doctor must be satisfied that the drug serves the patient’s needs. To address some of those concerns, I have tabled several amendments.

Amendments 96 and 97 ensure that no drug can be approved under the Act unless there is a scientific consensus that it is effective and does not cause undue pain or side effects, and that it has been specifically licensed for that purpose by the MHRA. I cannot really understand why anyone would disagree with that.

Amendment 98 clarifies that the Secretary of State is not compelled to approve any drug if, after consultation, it is concluded that no substance is appropriate or safe enough to meet the standard.

Amendment 99, alongside amendment 100, mandates that before any regulations are laid before Parliament, a comprehensive report must be provided. That report must include time to death, possible complications including pain, and any likely side effect of the proposed substances. Again, I cannot see why that would be controversial, because surely we all want everybody to be fully informed and make fully informed decisions, and that is part of making an informed decision.

Amendment (b) to new clause 13 requires any medical devices for self-administration be approved by the MHRA and that the Secretary of State consult the MHRA before making any regulations. That is a basic safeguard that we would expect in any medical intervention, and it should be a non-negotiable condition here.

Finally, amendment 42 removes a time limit and therefore the pressure on the Secretary of State. I understand other people’s concerns about that. There is often a narrative that it will lead to patients being able to die at a time and in a place of their choosing. However, the regulations in the Bill require the doctor to stay with the patient from the moment the drug is given until they are dead. We have heard that that could take quite a long time. Do we really have enough doctors to do this at people’s homes at a time of their choosing? At the moment, I do not think we do, and I do not see how, in a short period of time, that will be achievable either.

[Mr Alex Barros-Curtis (Cardiff West) (Lab)]

I stand in support of new clauses 20 and 21, along with amendments 89 and 90 and 92 to 95, all of which are in the name of my hon. Friend the Member for Spen Valley (Kim Leadbeater). Colleagues need not fear—I will not speak to all of them.

I am a proud Welsh MP, and a lot of the debate today has centred on differences or confusion about the distinction on devolution on aspects of the Bill. Focusing on new clause 21 and consequential amendment 90, I pay tribute to my hon. Friend the Member for Spen Valley and to the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts) for their work together on this issue to ensure that people in Wales can access the assisted dying process in the Welsh language, if that is their preference.

In the last few months, I have met with many constituents about this Bill, including medical professionals and palliative care consultants. One of their overarching concerns is a fear that the language barrier may inadvertently impact on the ability of a relevant person in Wales properly to access and understand the assisted dying process. I am grateful to those constituents, including Dr Siwan Seaman and Professor Mark Taubert.

Accordingly, new clause 21 and amendment 90 are important. They seek to replace clause 47 and provide Welsh versions of the forms for the first or second declaration, the report about the first or second assessment of a person, and the final statement. Further, they stipulate that where a relevant person informs the voluntary assisted dying commissioner that they wish to communicate in Welsh, the commissioner must take all reasonable steps to ensure that that wish is respected and that communications by the relevant assisted dying review panel are in Welsh. These are important amendments, as they are about accessibility and respect, ensuring that language is never a barrier to compassionate end-of-life care. They uphold the principle of linguistic equality, which is well-established in public services in Wales, and I trust that that should not be controversial to colleagues when they come to vote later on.

As a Welsh MP, I am pleased to see the inclusion of amendments 92, 93, 94 and 95. While they may appear to be small amendments, they are important. As my hon. Friend the Member for Spen Valley said, they fully respect the devolution settlement by ensuring that Welsh Ministers have all necessary powers on devolved aspects of the Bill—health—while retaining the powers of UK Ministers over aspects that are not devolved. I think that was slightly misunderstood earlier by some in this debate.

Taken together, the amendments provide clarity and legal certainty and offer reassurance to patients, clinicians and Government agencies in Wales. That principle should be uncontroversial. I know from my own discussions with the Welsh Government and the Welsh Health Minister that he is extremely grateful for the interactions he has had with my hon. Friend the Member for Spen Valley, and he is confident this measure is workable from the Welsh perspective.

New clause 5 seeks to mandate that the Secretary of State must, within six months, publish a report setting out the impact of this legislation on the civil procedure rules and probate proceedings. During the debate and the streams of evidence we have heard, I do not recall a suggestion that this Bill is likely to result in any serious changes to those specifically referenced matters. On the contrary, England’s CMO, Professor Sir Chris Whitty, warned against creating a “bureaucratic thicket”, saying that the best safeguards are the simplest ones. Let us keep that at the centre of our minds when we consider this legislation and avoid inserting amendments that are no doubt well-intentioned but would create such a thicket.

I conclude by sharing one story from a constituent of mine who was focused very much on safeguards, which has been the debate on all these amendments and new clauses.

--- Later in debate ---

[Stephen Kinnock]

I can confirm that it is absolutely the policy intent of the sponsor for that to be a backstop. The Government are working on that basis to ensure that it is a backstop and not a target.

Amendment 42 seeks to remove the four-year backstop. Although that is a matter for Members to decide, we note that if both that amendment and amendment 94, tabled by my hon. Friend the Member for Spen Valley, were accepted, nobody would have the power to commence reserve provisions in Wales. That would create major workability concerns for the service in Wales.

[Dr Johnson]

The advocates of the Bill talk about the point of choice and autonomy in the decision about when and where a person will die. Can the Minister confirm whether we have enough doctors to provide a service for people to die at home at the time of their choosing?

[Stephen Kinnock]

I refer the hon. Lady to the impact assessment, which is of course not a forecast but a set of scenarios. In it, detail is given on expected numbers and the capacity of the system to deal with the service.

Amendments 13 and 82 to 85 relate to the appointment of the voluntary assisted dying commissioner and panel members. The amendments would put the process for the appointments out of kilter with standard practice for public or non-judicial appointments and could significantly limit the pool of individuals available. Amendment 86 would give the panel the same powers, privileges and authority as the High Court, which are significant in scope and are set out across different court rules and legislation. It is unclear how those would apply to panels in practice. They may be unworkable given that the panel is not designed to be a court.

New clause 4 and amendment 28 would put various responsibilities on the chief medical officers for England and Wales. Imposing duties in primary legislation on an individual civil servant may cause difficulties in the future if the role does not exist or if the title changes. It is usual practice for duties in primary legislation to be conferred on the Secretary of State, who may decide to delegate to the chief medical officer.

I would like to briefly respond to a number of questions directly asked of the Government. The hon. Member for South Antrim (Robin Swann) asked about medicines regulation in Northern Ireland. The amendments will not affect the application of EU law; they will instead ensure coherence between the different legislative frameworks. The sponsor will lead engagement with the devolved Governments, supported by officials.

The hon. Member for Richmond Park (Sarah Olney) asked about the equality impact assessment. The EQIA considers the nine protected characteristics alongside socioeconomic background, geography and mental health. The hon. Member for West Worcestershire (Dame Harriett Baldwin) asked about the Suicide Act and advertising. I can confirm that encouraging or facilitating suicide will remain a crime under the Suicide Act. On advertising, new clause 14, if passed, would oblige the Secretary of State to make regulations prohibiting certain forms of advertising that promote voluntary assisted dying services. The exemptions to that, which may be provided under subsection (2), will not cut across the criminal offences elsewhere in the Bill or in the Suicide Act.

I hope that those observations were helpful to Members in their consideration of the technical workability of the amendments that we have debated today.