Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateLizzi Collinge
Main Page: Lizzi Collinge (Labour - Morecambe and Lunesdale)Department Debates - View all Lizzi Collinge's debates with the Department of Health and Social Care
(2 days, 23 hours ago)
Commons ChamberI rise to speak to amendment (a) to new clause 15, tabled in my name, which I hope hon. Members will support. Although it may seem technical, it is in fact a simple amendment with a significant impact. It will ensure that there is genuine protection against abuse, proper detection of coercion, and effective scrutiny of how the law works in practice. Simply put, it will ensure that deaths from assisted dying under the Bill will still fall within the coroner’s duty to investigate deaths under section 1 of the Coroners and Justice Act 2009. I will explain why that is important.
Like many hon. Members, I have been deeply concerned from the outset about how the Bill is drafted, its workability, and its impact on the NHS and on the lives of vulnerable people up and down the country. To be clear, my view is that one unintended death as a result of the Bill becoming law is one too many. I humbly ask hon. Members who are still considering their position, or who are minded to support the Bill, to consider this point about my amendment carefully: what is an acceptable error rate?
Based on the figures in the Government’s impact assessment, which I think underestimates the impact, even a 1% error rate would see a minimum of 13 wrongful deaths in year 1, with 45 per year by year 10. A 5% error rate would see 65 deaths in year 1 and 227 in year 10. A 10% error rate would see 131 deaths in year 1 and 455 in year 10. As I say, I think those are low-ball estimates, but they are nevertheless chilling. If this law is passed, it will be exceptionally difficult to say whether there have been errors or instances of abuse; or, at the very least, any errors picked up will be but a fraction of the true picture, as tragically those who would testify to the fact will already be dead. My amendment (a) to new clause 15 directly addresses that issue.
In England and Wales, a coroner will investigate a death when certain legal conditions are met. This duty is primarily governed by section 1 of the Coroners and Justice Act 2009. Judge Thomas Teague KC, who served until 2024 as the chief coroner of England and Wales, notes:
“any death arising as a consequence of the ingestion or administration of a lethal substance constitutes an unnatural death which the local coroner is under a statutory duty to investigate”.
Clearly, assisted dying meets that definition, and it is right that such deaths be afforded the best possible posthumous judicial scrutiny.
Does the hon. Lady not feel that the provisions in the Bill already have safeguards? Also, and most importantly, does she not feel that putting a family through a coronial process when the death is expected is unfair, unjust and completely beyond the bounds of what coroners are meant to do?
On the first point, I do not believe that the Bill is strong enough as it stands. On the second point, we are already dealing with the fact that families are not even guaranteed knowledge of their loved one having an assisted death, so I do not think the hon. Lady’s point is entirely to be considered.
As it stands, the Bill would disapply the duty of the coroner to investigate in the case of an assisted death that has been carried out in accordance with the Bill’s provisions. New clause 15, specifically, would amend the Coroners and Justice Act to clarify that assisted death does not constitute “unnatural death” for the purposes of the Act. I think it takes an extraordinary leap of imagination not to conceive of deliberately self-administering lethal drugs as anything but an unnatural death.
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.
I totally agree. We know that Esther Rantzen and Jonathan Dimbleby want the Bill to be implemented, but our role is to be voices for the voiceless, so I totally agree with her.
As opposed to the vague, ever-changing qualifying criteria that are held up as safeguards, at least these amendments would put ethnic minority people on the board: new clause 6 says that if they are on the ward, they should be on the board as well. The Bill seems to have neglected them altogether, so the new clause would provide real protections.
We know that in a cost of living crisis, assisted dying could be quite attractive. BAME communities have lower disposable household incomes than standard households, and during a cost of living and housing crisis, it is possible to imagine relatives wanting to speed up granny or grandad’s probate—or naani maa or dadima, even—to get a foot on the ladder.
No, because I will not get any more time.
Given the cost of care, people could convince themselves that elderly relatives would be better off out of the way, in order to get the younger generation on the ladder.
We know from the experience of other places that once assisted dying is allowed, the scope broadens—depressed 12-year-olds in Holland can get it—and the incentive to fix palliative care will lessen. Why now, with the state of the NHS? What of Suicide Prevention Week? Yes, we know that public opinion is in favour of assisted dying, but public opinion also supports bringing back hanging.
My hon. Friend is absolutely right. On a constitutional basis alone, amendment (a) to amendment 77 is necessary, and I hope that hon. Members will feel they can support it.
Moving on to factors beyond the constitution, I am concerned that there is a dangerous absence of an adequate regulatory framework for lethal drugs under the Bill. At present, clause 25 gives the Secretary of State powers to approve lethal drugs, while clause 34 mandates the Secretary of State to make provision for prescribing, dispensing, transportation, storage, handling, disposal and record keeping, as well as enforcement and civil penalties. However, the fundamental issue of how these approved substances are actually approved remains alarmingly weak. The Bill defines “approved substances” simply as
“a drug or other substance specified”
by the Secretary of State in regulations. There is no explicit requirement for those substances to undergo specific, rigorous testing for their use in assisted dying.
When this issue was debated in Committee, I was disappointed to see good-faith amendments to engage, such as amendment 443, being dismissed.
No, I will not.
Amendment 443 sought to mandate that those substances be approved through the Medicines and Healthcare products Regulatory Agency and either the National Institute for Health and Care Excellence or the All Wales Medicines Strategy Group processes. I therefore strongly support amendment 96, tabled by the hon. Member for Sleaford and North Hykeham (Dr Johnson), which
“ensures that drugs can only be approved if the Secretary of State is reasonably of the opinion that there is a scientific consensus that the drug is effective at ending someone’s life without causing pain or other significant adverse side effects.”
That is a common-sense approach that should attract support from across the House.
This week, more than 1,000 doctors wrote a powerful letter to all MPs to outline their deep concerns about this Bill, calling it a
“real threat to both patients and the medical workforce”.
I strongly urge this House and colleagues to read that letter before Third Reading. The Government’s own impact assessment does not provide any comfort with regard to the use of lethal drugs under the terms of the Bill, which the doctors’ letter picks up on, saying that
“there is no requirement for…[the drugs]…to undergo rigorous testing and approval that would be required of any other prescribed medication, nor indeed for them to be regulated by the Medicines and Healthcare products Regulatory Agency”.
They go on to say that that is
“contrary to all good medical practice”.
This matters not just for regulation, but with regard to patient safety and complications. There is no requirement in the Bill to inform patients about how risks—including a prolonged death, rather than the promised peaceful and dignified death—will be managed. Complications do occur, and this is not scaremongering. In Oregon, when complications have been recorded, patients have experienced difficulty swallowing, drug regurgitation and seizures, and they have even regained consciousness. In Canada, a Canadian association has noted that patients have experienced regurgitation, burning and vomiting.
I draw Members’ attention to the written evidence submitted to the Bill Committee by a group of expert senior pharmacists and pharmacologists. In their submission, they warn that the approach of the Bill puts the cart before the horse. Specifically, they caution against proceeding without
“a comprehensive review of the evidence for efficacy and safety”,
and note that that review
“should be scrutinised by MPs before…consideration of legalising assisted suicide”.
These are not small details or incidental matters, yet, even at this late stage in the Bill’s passage through the Commons, we are still being asked to pass legislation without satisfactory answers to basic questions from experts in the field. That is simply not good enough.
I am grateful to have had the opportunity to speak, and I will close by saying simply that whatever mitigating amendments may be passed, this Bill remains morally and ethically wrong. It is flawed and should not be passed.
I rise to speak to my amendment 27. The insufficiencies of clause 25 and new clause 13, and the mechanisms for substance approval, have attracted much criticism as they defy safe process. I have therefore undertaken extensive research with leading academics, toxicologists, anaesthetists, pharmacists and others to understand the safety concerns over pharmacology, prescribing and dispensing.
Normally, the MHRA would undertake research and trials to secure safety, quality and licensing. The British National Formulary focuses on dosage and side effects, and NICE or the All Wales Medicines Strategy Group focuses on showing that drugs work and are cost-effective. That safety regime underpins the reputation of UK pharmacology. So can this House assure itself that without due process, someone will have a safe and peaceful death? Let us look at the evidence.
First, the data is poor. The Health and Social Care Committee visited Oregon. We know there are varying times for how long it takes for someone to die—up to 137 hours. The research cites nausea and vomiting in 10% of cases, seizure, oral muscular burning, regurgitation and regaining consciousness.
No time.
There is a lack of consistency of approach and data across jurisdictions on the substances used, how they are titrated and the dosages administered. While ingestion can be a factor, absorption varies according to frailty, metabolism, diagnosis, body mass index and drug reactions. Pharmacokinetics and pharmacodynamics are complex.
However, it has been my discussions with toxicologists that have been most alarming. They highlight the high risk of acute pulmonary oedema. This is backed by research showing that 84% of cases using pentobarbital on death row have flash pulmonary oedema. The drug disintegrates the membranes in the lung tissue, filling them with fluid, causing shortness of breath and a sense of drowning. As a clinician, I have supported many people on intensive therapy units with such a diagnosis. High concentrations of the drug cause an acute assault to the cardiopulmonary function. If paralysed and conscious, a patient may look peaceful but is anything but.
Such physiological distress needs research. It is unclear how the Government will identify data, process and safety. The risk to those handling toxic substances also needs to be examined, and in the light of the Government identifying that a pregnant woman could opt for an assisted death, that clearly needs examination.
There is no formulation for safe titration or dosage. If pentobarbital is to be used, as it is in Australia, the Government’s impact assessment did not examine it, so it needs revision. Also, the drug is not an approved substance for humans in the UK, licensed or unlicensed. The MHRA and NICE have a role to play. We are increasingly hearing that professional bodies are withdrawing their support from the Bill, because they know that the regimes that have been set out are just not safe, so it is our duty to examine the evidence.