Terminally Ill Adults (End of Life) Bill

John Hayes Excerpts

Friday 16th May 2025 Commons Chamber

[Sir John Hayes (South Holland and The Deepings) (Con)]

That is why new clause 16, tabled by my hon. Friend, is so important. In other jurisdictions that have passed such laws, up to a third of people report that they have taken this step because they feel they are a burden on others. That is the truth of it—it is not always about pain—and that is the kind of autonomy that leads to disaster.

--- Later in debate ---

[Tom Rutland (East Worthing and Shoreham) (Lab)]

I rise to speak in support of new clause 10, which is about choice. In fact, the Bill is about choice: choice at the end of life and choice to have a dignified death. It is about a choice that is currently being denied to many in untreatable, excruciating pain at the end of their lives—a choice that the majority in this country would want for themselves.

New clause 10 is in that same spirit. It would offer practitioners a choice, by ensuring that there was no obligation on any person to provide assistance to a terminally ill adult seeking an assisted death. That includes those such as my constituent Aimee’s grandmother, who repeatedly asked her, “When will it end?” from the bed in her hospice, where, despite the best efforts of staff, they were medically unable to treat her constant pain and legally unable to make good on her wish to, in her own words, be helped to go.

The Bill allows doctors to choose not to participate in the assisted dying process if they so wish. The new clause would improve it by extending that provision to all registered medical practitioners, health professionals, social care professionals, pharmacists and pharmacy technicians. It would also make it clear that no person is under any duty to act as a witness or a proxy in the process. It would further amend the Employment Rights Act 1996 to ensure that no one could be subjected to detriment by their employer for providing assistance to those seeking an assisted death or for choosing not to do so. That is a good thing: it respects people’s choices.

Some will not want to aid someone seeking an assisted death because of religious or other principled objections, but some, like my constituent Karen, will want to. Karen wrote to me setting out her father-in-law’s terminal diagnosis of a brain tumour, his fear of losing control of mental and bodily functions as his condition progressed and his hope that the Bill would pass in time for him to benefit from it.

Karen is not simply a relative of a terminally ill person; she spent years working in palliative care, watching people lose their independence and dignity as a result of their terminal illness, with patients asking her how they could end the suffering for both themselves and their families. She was heartbroken to witness their distress and pain over days, weeks or even months, knowing that nothing could be done for them. In their painful final stretches, some felt suicidal and some felt a burden. For that reason, I must oppose new clause 16, which would rule ineligible for assisted dying anyone who is substantially motivated by a number of factors, including feeling a burden, or suicidal ideation.

[Sir John Hayes]

I am surprised by the hon. Gentleman’s objections to new clause 16, given that we have been assured throughout that the Bill would apply only to people who were terminally ill with six months to live. Is he really saying, therefore, that he does not want a new clause that would rule out from assisted death people who feel that they would be a burden on others, people with a mental disorder and people with a disability? His argument for choice is exactly the argument that in other jurisdictions has led to the expansion of assisted death to just those kinds of people.

[Tom Rutland]

I am grateful to the right hon. Gentleman for that intervention, because it allows me to continue making an argument that will address those points. First, substantial motivation is vague, undefined and legally imprecise. This new clause is a blunt instrument and an attempt to shut the door on entire groups of people accessing an assisted death. How would one establish what a substantially motivating factor in any individual case is? No motivation exists in a vacuum, and feeling a burden can co-exist with physical deterioration and untreatable pain. Secondly, if suicidal ideation is to think about dying by taking one’s own life, would that not encompass everyone considering assisted dying?

--- Later in debate ---

[Dr Tidball]

My decision to support the Bill on Second Reading was one of the hardest I have ever had to make. It required me to go into the very depths of myself and draw on my experience as a child in excruciating pain, as well as the extensive poignant experiences shared with me by my constituents. As I said then, my support was conditional on specific changes being made to the Bill in Committee. I am pleased to say that all those changes have been made. As a member of the Committee, I can tell the House that it was the most extraordinary cross-party deliberative process I have ever witnessed in my 20 years of analysing legislation as an academic and policy researcher working in disability law and policy. In Committee, I worked to strengthen the voices of disabled people, and their protection under the Bill. I moved motions to introduce clause 20 on independent advocates and clause 44, which would create a disability advisory board. These provisions are augmented today by amendments 75 and 91, tabled by my hon. Friend the Member for Spen Valley (Kim Leadbeater).

Clause 20 would establish the role of independent advocate. They would advocate for qualifying persons who engage with the Bill, so that those persons can effectively understand their options around end of life care. This would empower disabled people to be treated with the dignity and respect that we deserve. These independent advocates would be required to undertake specialist training, and would be available regardless of whether the individual is ultimately found to be eligible to request an assisted death.

[Sir John Hayes]

Will the hon. Lady give way?

[Dr Tidball]

I will make progress, out of respect for all those on both sides of the House who wish to make a speech.

The clause flowed directly from evidence that we heard from oral witnesses, including leading disability scholars and disability policy experts. In conjunction with amendment 75, which is before us today, those with autism, along with a learning disability or a mental disorder as defined under the Mental Health Act 1983, would all qualify for the services of an independent advocate. Amendment 75, which defines a learning disability, would also apply to clause 7, which provides for specific, up-to-date training for registered practitioners on reasonable adjustments and safeguards for autistic people and people with a learning disability.

In Committee, I was grateful for the support of my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) and, to my delight, the hon. Member for East Wiltshire (Danny Kruger) for these independent advocates, and for the Committee’s unanimous support for clause 44, which would set up the disability advisory board. That advisory board entrenches the voices of disabled people in the Bill, embedding a long-term and iterative structure for it to report on the Bill’s implementation and its impact on disabled people to the Secretary of State. Crucially, the board must consist of disabled people and representatives of disabled people’s organisations.

To build on those clauses, amendment 91 expands the duty to collect additional information about whether, immediately before death, the person seeking assistance had a disability as defined in section 6 of the Equality Act 2010, other than the disability amounting to terminal illness as defined in the Bill. So often, control is taken away from disabled people in all sorts of circumstances. I passionately believe in inclusive healthcare for disabled people. Together, all those measures will create a solid foundation to enable disabled people to have a strong voice when advocating for themselves about their choices on end-of-life care and, importantly, a seat at the table in shaping the monitoring of the Bill and providing continued scrutiny and accountability.

To conclude, there were many moments in Committee when I reflected on how I would want to live a good death, but the most poignant was when Julie Thienpont described the death of her terminally ill husband, Guy, who sought an assisted death in Spain:

“Guy had always been a bit of an old cowboy, and he always said that he wanted to die with his boots on. I am proud to say that that is what he did. At the end, we were holding hands, and I said to him, ‘Don’t be afraid.’ He said, ‘I’m not afraid,’ and he winked at me just before he closed his eyes.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 258, Q334.]

May we all have the opportunity to choose a good death, wearing our cowboy boots with the love of our life by our side.

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

I rise to speak to amendments 26, 45 and 46, which stand in my name and the names of other Members. I am grateful for their support.

On amendment 26, hospice care is not a formulation of care, but a clinical setting where palliative care is delivered, so I trust that the House will accept my amendment in the interests of accuracy.

On amendment 45 and consequential amendment 46, the literature points to complex clinical decision making—which the subject of the Bill is—being safer if it happens in the context of multidisciplinary teams, as was advocated for by the professional bodies at the very start of the process. Such a context screens out unconscious bias and provides for clinical accountability with robust interdependency. It demands a deliberative process and it safeguards clinicians and patients with more secure outcomes. I have talked extensively to the professional bodies and clinicians, and I have read the academic evidence. In drawing on best practice, this amendment would provide such safeguards and ensure that the patient is at the heart of the process.

Members will know from the evidence given to the Bill Committee that the initial assessment is the most important part of the process, and clinicians and professional bodies do not understand why psychiatrists and social workers are being placed in a quasi-judicial role, rather than being used for their clinical and social expertise. The process makes the wrong assumptions. Without the amendments, there is a predication towards an assisted death, rather than the Bill recognising the insecure position that someone with a terminal illness finds themselves in and the safeguards that are required. There are many reasons for suicidality, and they should be explored.

In clinical practice, should someone determine that they want to end their life for whatever reason, a clinician would seek to ensure that the right professionals were involved in the care of the person, with exploration, diagnosis and, where necessary, therapeutic and pharmacological interventions.

[Sir John Hayes]

Will the hon. Lady give way?

[Rachael Maskell]

I will not. Dr Lade Smith, the president of the Royal College of Psychiatrists, could not have been clearer, and academic research says the same: when someone is in receipt of a terminal diagnosis, there is frequently an episode of depressive disorder. Dr Price said in evidence:

“Those who had a wish to hasten death were 18 times more likely to also feel suicidal”.––[Official Report, Terminally Ill Adults (End of Life) Bill Public Bill Committee, 30 January 2025; c. 275, Q359.]

They say that mental disorders are treatable. The spike in suicidal ideation and action is highest in the first few months following terminal diagnosis and then dissipates with time or intervention. Again, that is evidenced. People change their mind and no longer want to die.

As with other aspects of the Bill, poor care, poor pain management and poor symptom control—or the fear thereof—are reasons why people seek to end their life. That can be palliated. Colleagues must recognise the paucity of mental health provision given to somebody when they receive a terminal diagnosis. Often there is no psychological aftercare. People are failed, but that should not be a reason to die.

I ask for a panel, which would include a social worker, to assess the psychological needs of a patient. They are experts in detecting coercion, whether intrinsic or extrinsic, and understanding people at their most vulnerable with a fusion of complex emotions, anxiety and fear. Solutions can be found by them. There would also be a psychiatrist. Depression, anxiety and fear are natural responses to trauma, but they can be treated with the right interventions, if detected at the point that somebody expresses a wish to die, and a person can have a wish to live. The travesty of getting it wrong is unconscionable.

There would be a palliative care consultant who is registered on the GMC’s specialist register. They would understand the actions that could alleviate someone’s suffering. Evidence to the Bill Committee from Sue Ryder showed how poor provision led to someone considering an assisted death. Likewise, the president of the Association for Palliative Medicine, Dr Sarah Cox, said:

“We know that effective palliative care can change a terminally ill person’s point of view from wanting to die to wanting to live.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 70, Q84.]

That is evidence. It is a point I have heard from all leaders on the Commission on Palliative and End-of-Life Care. These are the specialists who know how to palliate the physical, psychological, social and spiritual problems of a patient, and they have techniques that many people have not had access to, because of poor provision.

The palliative care commission reported on Tuesday and I urge hon. Members to read its evidence-rich report, which draws on best practice. We reported that excellence in end-of-life provision is achievable, but that too many people are not getting access to it. Without that, I fear that the Bill only leads the patient down one route—to die. This is not a choice at all, but a path to an assisted death.

--- Later in debate ---

[Sir Jeremy Wright]

I understand the hon. Lady’s point and I have seen her amendments on the subject, which are very sensible. We need to think about the way in which the panel process will actually unfold. If we believe that this is an important safeguard, as, I think, is a common view, we need to do everything we can to make sure that it is an effective one. Like the hon. Lady’s amendments, my amendment 47 seeks to remedy the problem by ensuring that the assisted dying commissioner notifies anyone they think may have relevant evidence to give so that they can give it. That evidence may, of course, not change the panel’s decision, but in some of the most troubling cases it will, and the opportunity for the panel to consider that evidence, when the stakes are so high, must surely be provided for.

I accept that what I am proposing is an infringement of the privacy of the person wishing to die—it is a fetter on their ability to choose to die without informing their family or friends as they may wish—but the Bill is all about balancing the rights of a person to die as they wish with, on the other hand, our duty to protect the vulnerable from abuse. That is exactly why the stages through which a person must go in order to be assisted to die are in this Bill, including obtaining the grant of a certificate from a panel. To be of value, as I say, that must surely add new protections to the other stages.

[Sir John Hayes]

We were assured that one of the key safeguards in the Bill’s original incarnation was a legal test. That process—had it been retained, of course—would have enabled the collection of evidence in the very way that my right hon. and learned Friend is describing. It is partly because the safeguards have been weakened that we have the dilemma that his amendments seek to deal with.

[Sir Jeremy Wright]

I understand my right hon. Friend’s point, but I am not sure I entirely agree with him. I think some of the procedural problems I am describing would have existed even with the previous iteration of the Bill, but certainly they are there in its current iteration. At this Report stage, I am seeking to fix the problem that arises from the difficulty for the three qualified individuals who will constitute these panels to express a considered judgment. If we are to have added value in the panel stage of this process, we surely have to enable the panel to make good judgments. Good judgments come from the capacity to assess all the relevant evidence. The Bill, as it stands, makes it very hard for the panel to have access to all that evidence in every case, but perhaps especially in those cases where the additional safeguard is most needed.

--- Later in debate ---

[Damian Hinds (East Hampshire) (Con)]

For reasons of timeliness, I will speak only to amendment 101, which relates to adults with Down syndrome or a learning disability, although the amendment is directly relevant to new clause 1, as the right hon. Member for Hackney North and Stoke Newington (Ms Abbott) spoke about. Amendment 101 would disallow medical practitioners from initiating a conversation about assisted dying with a person who has Down syndrome or a learning disability. I speak primarily from my experience, along with others, on the all-party parliamentary group on Down syndrome and what we have heard from members of that community: people with Down syndrome and their families, and professionals specialising in the condition.

Many strong and deeply heartfelt arguments have been put by colleagues, and indeed to all of us by constituents in favour of the Bill, including by families in the most difficult circumstances to imagine—actually, they are sometimes unimaginable circumstances. Nobody could question the conclusions they have come to individually as a result of their circumstances. Equally deeply held and heartfelt points are made to us by people from the other perspective, also informed by their sometimes unimaginable own or family circumstances.

Of the arguments put against the Bill, I am particularly drawn to those around coercion. However, it is important to remember that coercion is not entirely a black-and-white matter. At the sharpest end, there are cases where an individual will directly bring pressure to bear on another for their own ends, but there are many gradations below that, and pressure can be felt differently by different people. It may be felt especially by people who worry they are a burden on their family, on caregivers, on the national health service, or indeed more broadly on society. Once assisted dying is an available option, over and above the question of pressure from others, I worry about the effect of pressure from oneself.

The Bill stipulates in clause 36 that the Secretary of State will issue a code of practice to ensure that the practitioner establishes that there is a “clear and settled intention” for the person to end their own life, including assessing that that person has

“capacity to make such a decision”.

That will have material challenges of its own. However, with regard to amendment 101, I am talking about the initiation, suggesting or raising of the matter specifically with an individual who has a learning disability or Down syndrome.

[Sir John Hayes]

The critical point about my right hon. Friend’s amendment, and indeed about new clause 16, is that they would put that on the face of the Bill. He is right to say that codes of practice and statutory guidance can be of value, but it seems to me that what is on the face of the Bill will be of fundamental importance, particularly in respect of coercion.

[Damian Hinds]

My right hon. Friend is right, of course. When we in this House are told that there will be secondary legislation, guidance or a code of practice, we can only ever take that on trust, and this subject is of such moment that what is on the face of the Bill is that much more important. Given the scale of the decisions that people could make as a result of this legislation, it is right that an additional layer of caution should be applied by legislators.

Obviously, it is important not to generalise—every single person is an individual—but it is the case that people with Down syndrome often exhibit distinct social characteristics, including great sociability, empathy, and a strong desire to please others and seek positive social feedback, while also being particularly sensitive to criticism or perceived failure, which can compound issues around communication and comprehension. We do not need to define what can result as coercion to worry about what might happen in that context.

Amendment 101 and new clause 1 are about initiating a conversation and ensuring that there are additional safeguards, and I urge the House to apply caution that is commensurate with the gravity of the path that could be embarked upon.

--- Later in debate ---

[Neil O'Brien]

Will my hon. Friend give way?

[Sir John Hayes]

rose—

[Dr Mullan]

Not on that point.

We may wish to reflect on how we might change our approach to Bills like this one in the future, given the significant dissatisfaction that has been expressed with the manner in which it has been considered, even though it has been done in the ordinary way. But we are where we are.

As on Second Reading, this debate has been a balancing exercise. The promoter of the Bill and others have appropriately reminded us all of the very difficult and tragic experiences faced by the terminally ill and their families, but I respectfully say to the hon. Member for Spen Valley that we should be cautious in saying that opponents of the Bill are happy with the status quo, and I know that she would not have meant to suggest that.

[Dr Mullan]

My hon. Friend has added his concerns to those of others about the manner in which the debate has been conducted, but I reiterate that this has been done in the ordinary manner in terms of the Speaker’s discretion and the Standing Orders of the House.

Opponents of the Bill are concerned that it will lead to a different set of unacceptable circumstances for different people; it is not that they are happy with how things are at the moment. All MPs have talked about people they care deeply about and how to help them. Whether they referred to disabled people, young people or the terminally ill, MPs have been speaking out in support of or against amendments, out of concern and compassion.

I may be tempting fate in saying that we might find consensus on advertising restrictions, but outside of that, Members have undoubtedly expressed a variety of strong views on others’ amendments. It may be that Members vote consistently in line with whether they were originally for or against assisted dying, but other Members who are supportive of the Bill in principle are voting for restrictive amendments because they think that they are necessary. That is because this is a complex moral, legal and societal matter. I understand that Members are considering their votes with a degree of uncertainty.

There should be no shame at all in Members’ admitting that they will be daunted by the sheer number of potential changes to the Bill, not to mention the decisions from the Speaker on those we are going to vote on or the challenge of deciding how to vote on each of them, either today or on a future day.

[Sir John Hayes]

Will my hon. Friend give way?

[Dr Mullan]

No, I need to make progress. They will be daunted not least because, although we have international examples, we are considering a novel practice in this country in our particular circumstances.

Members who are generally supportive or opposed in principle may choose to abstain on a number of amendments on which they feel that they are unable to give a definitive view and are content to vote on the final outcome on Third Reading. That would be understandable. I know that Members have considered how they will vote very carefully, and that they will continue to do so, by taking into account their views and experiences, as well as those of their constituents, other Members whom they respect, and experts and campaigning organisations. We will all be directly accountable to our constituents at the next election for all our votes throughout this Parliament.

That brings me to the remarks that I said I would like to finish with on the responsibilities of the public and campaigners towards MPs as they consider our votes. As we are first and foremost public servants, the focus is quite rightly usually almost entirely on the responsibility of MPs to the public, but as with all meaningful relationships, this is, and should always be, a two-way street. I accept the very strong feelings and deeply personal experiences that are brought to bear for those people contacting their MPs, and nothing I say should be taken as diminishing the rights of campaigners to make their cases strongly and consistently, but I and others have experienced lobbying by campaigners whose passion for securing the outcome they want has led them to question the integrity, sincerity or understanding of those MPs seeking a different outcome to them.

Some high-profile campaigners have made unhelpful remarks. Although I am not religious, I was concerned to see the clumsy criticism of those whose objections to the Bill are thought to be centred in their religious beliefs, as was mentioned by the hon. Members for Vauxhall and Camberwell Green (Florence Eshalomi) and for Lowestoft (Jess Asato).