Terminally Ill Adults (End of Life) Bill

Rachael Maskell Excerpts

2nd reading
Friday 29th November 2024 Commons Chamber

[Rachael Maskell (York Central) (Lab/Co-op)]

This is hard, Madam Deputy Speaker. With compassion, we search for ways to best alleviate pain and suffering and ensure that those we love die in peace. Initiated by the Bill, focus has rapidly turned to caring for the dying and optimising every moment of the life that we want to hold on to; it breaks us knowing that at some point we have to let go. That was the mission of Dame Cicely Saunders, founder of the hospice movement.

Thankfully, most die in peace, but tragically not all. Funding for palliative care has regressed against rising demand in an ageing society with growing comorbidities. Hospices are paring back services. Research by the Anscombe Bioethics Centre in Oxford highlights how jurisdictions with assisted dying fall down the rankings on palliative care, while promised funding never materialises. When more than 100,000 people, predominantly in poverty, from minoritised communities or based on postcode, fail to access any palliative care despite needing it, or when those who access care do so from frequently overstretched services, unable to make timely or optimised interventions, or when, for most, care starts far too late, tragic testimonies follow, as we have heard in recent days.

We all know that the NHS is under significant duress, and just cannot do what it should. Social care is fragmented and costly, and palliative care is significantly underfunded and inequitable. This is a mess. Following Lord Darzi’s devastating report, we must give my right hon. Friend the Health Secretary the opportunity to reset health and care. I believe that that is what we on these Benches were elected to do.

With just 17 days since publication, this Bill has consumed us and that will only intensify if it proceeds. Instead, our focus should be on getting palliation right and then seeing what is really needed. We cannot do both as there is simply not the capacity. More than 70% of the public say that they want a commission on palliative and end-of-life care before we consider assisted dying. Other polls agree. Plans for a commission are well advanced.

[Sir Roger Gale (Herne Bay and Sandwich) (Con)]

I agree with the hon. Lady entirely: the way forward should be through better palliative care and not through assisted suicide. The Bill does not address the needs of children. Would she recognise that we also need better palliative care for children as well as adults?

[Rachael Maskell]

I completely agree with the right hon. Gentleman, who makes a pertinent point. After all, we would never write a prescription before making a diagnosis, yet this Bill does that. It is simply prescribing the wrong medicine. Extraordinarily, there is no critical analysis, not even an impact assessment, when such significant matters of life and death are at stake and when our broken health and justice system would be stretched even further.

My constituent was just 46 when she received a terminal diagnosis. She did not have long; the cancer was advancing and the prognosis would have qualified her for an assisted death. Had it been law, she would have consented. Now 54 and in remission, she pleads that the Bill should not pass. Palliative care consultants say that it is nearly impossible to prognosticate at six months; just 46% get it right. Experts say that the arbitrary six-month threshold is insecure. We must recognise its prematurity. Clause 2(2) says that someone for whom treatment only relieves symptoms but does not cure them would qualify for an assisted death if they were within the criteria. We understand someone declining chemotherapy, but the provision extends to any condition where a cocktail of drugs is sustaining life. The person involved may be only 18. That would not need a change in the law; it is written in the Bill.

My greatest concern is coercion. We live in a coercive society; the UK spends £40 billion on advertising and ever more powerful algorithms drive us to content online. We recognise coercion in relationships or elder abuse, but the Bill fails to safeguard against it when someone is dying and there is malign intent. People often recognise coercion only after years have passed, yet within a month someone could be dead. Malign coercion cases may be few, but as a clinician working at the fringes of life, I heard my patients frequently say, “I don’t want to be a burden,” or “I’d rather the money went to the grandchildren than on my care,” or “Somebody is more deserving than me.”

Intrinsic coercion is very real, not least where the law has changed—rapidly becoming an expectation, verbalised as a duty to die. In fact, not wanting to be a burden is cited as a major reason to opt for an assisted death, alongside loss of dignity, loneliness, and needing personal care, yet every day, disabled people live in this reality. We fight in this House to take away stigma and give dignity, equality and worth. That is why disabled people fear the Bill: it devalues them in a society where they fight to live.

We should understand why Disability Rights UK opposes and why Liberty opposes: to push back against the Bill is the cause of the progressive and the libertarian, not just the domain of the conservative. Under this Bill, a doctor may raise an assisted death with their patient—clause 4(2). Given the trust we place in doctors, not least when people are vulnerable, this is so significantly coercive. Let us suppose there is unconscious bias, which is well known in healthcare. Before people question that assertion, let me cite the industrial application of the Liverpool care pathway, and then, five and a half years after its ban, the covid “Do not actively resuscitate” letters. The evidence shows that disabled and ethnic minority people experience bias in healthcare. Those who stand for equality will recognise the safeguarding failures in the Bill. While not wanting to encourage suicidal ideation, rates are 6% higher in jurisdictions where there is assisted suicide.

On the process, two doctors—possibly unknown to the patient—ask a set of questions. It can take days to establish capacity in the courts, but it only needs a consultation. That is the same for assessing coercion and prognosis. Doctors are proponents of assisted dying. Risk increases in closed environments. At least the Isle of Man is considering a parole board-style approach; this Bill does not. The documentation of the decision fails in its rigour, not even seeking evidence for the decision. It is passed to a judge.

Sir James Munby, former family division president, describes,

“a scheme which does not provide for an open and transparent process but, on the contrary, permits a secret process which can give us no confidence that it will enable the court to identify and prevent possible abuses.”

In decrying how the Bill changes the role of the judge to one of certifying compliance, he states,

“the Leadbeater Bill falls lamentably short of providing adequate safeguards,”

describing the suspension of any appeal as an “extraordinary” omission, not least if the patient’s concerned relative or physician cannot take their case. That is backed by Thomas Teague KC, former chief coroner, who said the safeguards “will not hold” and that they

“amount to nothing more than arbitrary restrictions, with no rational foundation.”

Lord Sumption, former Supreme Court judge, highlights that once the law facilitates assisted suicide, it could be deemed discriminatory to deny others—disabled people—the same right. Barristers say they will take cases. They expect the law to change.

[Lewis Atkinson]

Will my hon. Friend give way?

[Rachael Maskell]

I will press on.

Much would rely on regulations using the negative procedure, and some the affirmative. Even if not prepared within two years, clause 42(3) says the Act would be fully implemented. The Bill changes the role of the chief medical officer without any analysis, as is the case for doctors. During the 14-month Health and Social Care Committee inquiry, we heard how the clinician-patient relationship changed with assisted suicide. Record keeping and data collation is inadequate, as we found in Oregon.

Clause 18(9) highlights that the procedure may fail. The Bill is silent on how to manage such cases, but it should be explicit. We must acknowledge that it is not always peaceful. We learned in Oregon that some have seizures or vomit as the body rejects the toxic medication.

The Bill falls woefully short on safeguarding patients, too. It is too flawed to amend. It is a wrong and rushed answer to a complex problem. Today, we must be beyond reasonable doubt of error if voting for the Bill. Remember, the vote is not on the principle of assisted dying or on choice, but the principles detailed within the clauses of the Bill. Polling overwhelmingly says that if Members are in any doubt, the public expect them to vote against the Bill today. We can focus on optimising palliative and end of life medicine to build consensus and to discern what further steps need taking. For death, as with life, is too precious to get this wrong.

[Madam Deputy Speaker (Caroline Nokes)]

I call the Chair of the Health and Social Care Committee.

Terminally Ill Adults (End of Life) Bill

Rachael Maskell Excerpts

Report stage
Friday 13th June 2025 Commons Chamber

[Dame Caroline Dinenage (Gosport) (Con)]

I intend to speak only briefly. We have to be really honest about where we are, and the current situation under the legal status quo is not working. It is failing terminally ill people who want choice, compassion and control at the end of their lives.

Right now, those with the means are travelling abroad to die, often alone, away from their loved ones, without medical support, and when they can physically make it rather than at a time of their choosing. Those without the means face suffering they do not want, or try to take matters into their own hands here in the UK unsafely and illegally. It is not humane, it is not fair and it is not sustainable.

I spent two years as a Minister in the Department of Health, with palliative care and end-of-life care as part of my portfolio, so this matter came across my desk on a regular basis. I have had a lot of time to think about it. It is not easy to find an answer and a solution, but we owe it to people to try to do that. That is why I support the Bill: it brings the issue out of the shadows and into a framework of regulation with safety and dignity.

[Rachael Maskell (York Central) (Lab/Co-op)]

I do not know whether the hon. Member has yet had time to read the report from the independent commission on palliative and end-of-life care, which goes into how pain and symptoms can be palliated. Ultimately, the problem at the moment is poor care and poor provision of specialist commissioned palliative care services. Will she read that report to understand the difference that palliative medicine can make for all the examples of poor care we have heard about in these debates?

[Dame Caroline Dinenage]

I certainly will read that report. The hon. Member makes an excellent point. Palliative care is really important and needs to be improved. In many cases it makes such a difference, but it is not the solution for everybody. There are the most heartbreaking cases—I have met people in these situations in my constituency—where that form of palliative care would not have made the difference. That is why I support the Bill, and that begins with new clause 13.

--- Later in debate ---

[Richard Tice]

I will not, because so many hon. Members wish to speak.

In this country we are lucky enough to have some of the finest palliative care in the world, and it is a noble aspiration to want to improve that—to be the best in the world. Nevertheless, many of us will have seen loved ones, family members and friends, suffer huge pain even given the finest palliative care. The trauma that that leaves for those left behind can be painful and enduring, which is why we are where we are.

[Rachael Maskell]

On that point, will the hon. Member give way?

[Richard Tice]

No, that would be unfair as so many wish to speak.

In considering the Bill, I think, yes, let us improve palliative care, but let us remember that choice, when faced with certain unimaginable pain, is the right thing to provide. That is why I will be supporting the Bill.

--- Later in debate ---

[Madam Deputy Speaker (Judith Cummins)]

Members need to be aware that I will start the Front-Bench speeches at 1.30 pm. I call the final Back-Bench speaker, Rachael Maskell.

[Rachael Maskell]

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.

[Lizzi Collinge]

Will my hon. Friend give way?

[Rachael Maskell]

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.