Terminally Ill Adults (End of Life) Bill (Fifteenth sitting)

Marie Tidball Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Stephen Kinnock]

It is the Government’s view that, even though the Bill is introducing something new, introducing new and potentially parallel legal frameworks would not improve its clarity or workability. In essence, the Government’s view is that we bring forward legislation; if that legislation passes, we bring forward regulations; and we then bring forward training and capacity-building to ensure that we ultimately have a system that is operational.

The Government do not accept the argument that bringing forward a new parallel framework of legislation at the first step would improve the workability and operationalisation of the Bill. My role as Minister on this Committee is to talk about the fact that the Bill needs to be workable, operational and legally watertight. The Government’s general view is that if we have a legislative base that, in our view, works—namely, the Mental Capacity Act 2005—we should not add more complexity into it.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

To build on the points the hon. Members for Reigate and for East Wiltshire were trying to make, does the Minister agree that a reasonable person on the street would believe that the act of disconnecting a respirator was a positive act? Currently, the Mental Capacity Act is applied to that act in relation to decision making; that is therefore analogous to the process for which it will be used in relation to this Bill.

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[The Chair]

I call Marie Tidball.

[Dr Tidball]

I am sorry, Mrs Harris, but I may have risen too soon. I want to speak to amendment 339, but I would first like to hear from my hon. Friend the Member for Bexleyheath and Crayford, who tabled it.

[Danny Kruger]

I rise to speak to new clause 6, in the name of my hon. Friend the Member for Solihull West and Shirley; to amendment 368, in the name of my right hon. Friend the Member for East Hampshire; to amendment 270, in the name of my right hon. Friend the Member for South West Wiltshire (Dr Murrison); and to amendment 278, in the name of the hon. Member for Wells and Mendip Hills. I will canter through them as quickly as I can.

My concern about new clause 6, which specifies that an advance directive would be inapplicable in the case of assisted dying, is that, as we discussed briefly at a previous sitting, advance directives are currently about the refusal of treatment. That is what they exist to do. Under the new clause, as in the Mental Capacity Act 2005, the effect of an advance decision would be that

“the specified treatment is not to be carried out or continued”.

However, under clause 18, the doctor must be satisfied at the time that the lethal substance is provided that the patient has capacity. I do not think that the new clause is necessary; it is otiose or even nonsensical, because the Bill already assumes that the patient has capacity at the very end. [Interruption.] The hon. Member for Spen Valley agrees with that point. I invite my hon. Friend the Member for Solihull West and Shirley to consider whether he wants to press new clause 6 at all.

On amendment 368, which relates to people with Down’s syndrome, I hear what my right hon. Friend the Member for North West Hampshire says. I strongly agree with him; I will make a couple of points and then respond to his suggestion.

I look forward to the points from the hon. Member for Spen Valley. I do not say this in a carping spirit, but it is relevant that the National Down Syndrome Policy Group opened its submission with a series of complaints about the process. The group feels that the consultation process has been rushed: we have not had the usual 12 to 16-week public consultation. It talks about limited professional and affected population engagement in the course of the drafting of the Bill, and a lack of accessible consultation materials; I mention that not to revisit the debate that we had about the process, but because it is a bad start. In the group’s mind, it is a harbinger of how the Bill might operate, and I understand why it thinks that.

The fact is that in our society we have persistent and entrenched discrimination against people with learning disabilities, particularly people with Down’s syndrome. There is a fundamental assumption that is too widely shared that the lives of people with Down’s are worth less than others’. One sees that, I am afraid to say, in the prevalence of prenatal screening and termination of Down’s babies. Yet we know from research that the lives of people with Down’s are as fulfilling, joyful, positive and constructive as everybody else’s. The most marvellous fact is that 99% of people with Down’s syndrome say that they are happy with their life, which I am sure is more than on this Committee and probably more than in the general population.

As a society, we serially misunderstand and degrade the value of people with Down’s syndrome. They are victims of the system, particularly in healthcare. People with intellectual disabilities died at rates three to four times higher than the general population during the covid crisis, often with inappropriately applied “do not resuscitate” orders put on them. The representation from the National Down Syndrome Policy Group was signed by 50 organisations, all representing people with Down’s syndrome, so it is pretty widespread.

Expert advice is that it is very difficult to spot coercion when dealing with people with Down’s syndrome. It is very difficult to ensure that one is getting informed consent. A point that has been made, in particular by the Down’s Syndrome Research Foundation, is that a discussion with someone with Down’s can often feel to them as if a suggestion is being made. That is particularly relevant to the whole question of a doctor’s suggestion, which we will come on to—well, we are on it now. Certainly the whole matter of how a person with Down’s syndrome receives information needs to be taken into account in any work that is done.

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[Danny Kruger]

I think my hon. Friend is suggesting that a doctor should suggest assisted dying as an option in every case, because if he is suggesting that a reasonable patient would want to know this towards the end of their life, he is saying that every dying patient should be told, “What about assisted dying?” That is a very concerning suggestion. The question is: how would a doctor decide when or when not to make this suggestion?

I will go back to Montgomery and make this point as clearly as I can. The Bill accepts that assisted dying is not an ordinary medical treatment, which is why I pressed the Minister on this question. Clause 4(1) disapplies the Montgomery case law, which requires, as part of informed consent, that the patient be informed of all appropriate options. Having conceded that assisted dying is not an ordinary medical treatment, the objection to a prohibition on doctors raising it makes little sense.

It is true that having such a prohibition would be unlike any other medical treatment, but the Bill has already crossed the Rubicon of saying that assisted dying is different from all other medical treatments, because in clause 4(1) it says that doctors are not obliged to offer it. It is either the case that they must offer it or they must not. There is no grey area. If they do not have to suggest it in any case, that implies that assisted dying is unnecessary in all cases and there no cases where it should be used. I would like to hear from any Member who has an answer to this: in what circumstances might it be appropriate for a doctor to suggest assisted dying?

[Dr Tidball]

Does the hon. Member therefore disagree with the British Medical Association, whose evidence to the Committee has said specifically:

“We support the Bill’s balanced position such that there is no prohibition on raising assisted dying with eligible patients where, in their professional judgement, the doctor considers this to be appropriate—but there is also no duty to raise it”.

The implication is that the Bill gets that balance correct.

[Danny Kruger]

I am grateful to the hon. Member for highlighting that. I disagree with the BMA—I think that its idea of balance is actually an incoherence in the Bill. I note that the BMA elsewhere has suggested that assisted dying should not be regarded as a normal healthcare option or treatment. It is itself a victim of the confusion that is reflected in the Bill about whether or not this is healthcare. As I said, the disapplication of Montgomery in clause 4(1) suggests that it is not actually healthcare treatment and should not be managed in the same way as everything else.

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[Naz Shah]

My hon. Friend no doubt speaks from his experience of being a mental health nurse. I think there is space for that, and there are amendments that we will come on to when we talk about later parts of the Bill that deal with those initial conversations. I will be happy to address that issue then. I also welcome any more support that he can offer on those conversations based on his expertise.

As I was saying, in practical terms, we have evidence that in many cases, although not all, that desire will fall once a patient has had time to think through their diagnosis and once they have had good medical care for their illness or condition, and, in some cases, psychiatric support—a holistic package, perhaps even with social work intervention. Surely all Members would agree that we should give seriously ill people, who have just had such a shocking diagnosis and prognosis, time to think and to receive good medical care before they start the process of applying for assisted death. That surely applies to those of us who voted for the Bill on Second Reading every bit as much as those of us who voted against.

I will put it as plainly as I can: there is a significant risk from the Bill that people will be shocked by their initial diagnosis and prognosis, and, in that shocked state, will be more likely to apply for assisted dying. There is also evidence, however, that if they were to pause between the diagnosis and applying for assisted dying, they would be much less likely to have an increased desire to hasten death. This amendment would not be a perfect protection for people suffering from the shock of their initial diagnosis and prognosis, but it would be a clear safeguard that would protect many of them.

I want to make it clear that I was probably 60% against and 40% in favour of the Bill on Second Reading; I want to see a stronger Bill, with protections for the vulnerable. There is a significant group of vulnerable people who this Bill would put at increased risk—those who might take a decision to apply for assisted dying that, if they had had time to consider it and to receive medical and social care, many would not have taken. I ask hon. Members to support my amendment.

[Dr Tidball]

It is a pleasure to serve under your chairship, Mrs Harris. I will be supporting amendments 319 and 320 tabled by my hon. Friend the Member for Bexleyheath and Crayford. I am a great admirer of my hon. Friend’s work in championing people with learning disabilities, and his mission to give them a strong voice in this Bill. It is an area very close to my heart, having spent over a decade and a half working with people with learning disabilities and the advocacy organisations that support them.

I will, however, not be supporting my hon. Friend’s amendment 339, merely because I am drafting something to strengthen those measures even further. My amendments will go beyond amendment 339 and amend the code of practice so that seeking advocacy and access to an appropriate adult applies across the pathway to those seeking assistance, not merely in relation to the content of clause 4, as in that amendment.

I want to ensure that access to an independent advocate or appropriate adult is expanded to cover those with autism, a learning disability or a mental disorder, which is not currently covered by amendment 339. That will enable those people to engage with any of the provisions under this Bill through the support that they would receive from an independent advocate or appropriate adult.

As I say, I am also seeking to strengthen access to such advocacy across the pathway, through seeking assistance at each stage. I have huge respect for my hon. Friend, but I want to make sure that we specifically include the language of “mental disorder”, to make sure that that particular group of people with mental health problems is able to access independent advocates, as well as those with learning disabilities and autism.

I am also looking at whether we need a consequential amendment or new clause that would make the Secretary of State put in place provisions for regulations as to the appointment of persons as independent advocates in order to ensure that those seeking assistance under the legislation who have a learning disability, autism or a mental disorder can have proper access to such advocates. That would strengthen the resource provision and access for that group.

I have worked closely with Mencap on the amendments that I am drawing up and will continue to do so, and I would welcome input from my hon. Friend the Member for Bexleyheath and Crayford. Although I support his intent in principle, I will be tabling amendments to cover a broader group of individuals to access such appropriate adults and independent advocates, so that they can seek and access advocacy across the pathway and period of seeking assistance. My amendments would put access to appropriate adults and independent mental health advocates on a much firmer footing in the Bill.

[Sarah Olney (Richmond Park) (LD)]

I wish to speak briefly to amendment 270, in the name of the right hon. Member for South West Wiltshire, to which I have put my name. It is about the really important issue of assessing suicidal intent as part of the assessment as to whether somebody has capacity to seek an assisted death. It is a really important point. The Bill expressly sets out that the person seeking an assisted death should have

“a clear, settled and informed wish to end their own life,”.

Amendment 270 seeks to establish that the wish cannot be clear or settled if there is any doubt about whether the person has a suicidal intention instead of seeking an assisted death on the basis that they have a terminal illness. In its current form, the Bill does not require a structured assessment of whether a patient is experiencing remediable suicidal risk factors, such as treatable depression, external pressures or suicidal ideation, before assisted dying is discussed.

In the oral evidence, Dr Mulholland said that most people with depression, anxiety and other mental health problems “would have capacity” under the Mental Capacity Act because it would be presumed. It is not necessarily an obstruction to people being referred for anything. It is an important point that someone can have depression and that it can lead them to have suicidal thoughts, but under the Mental Capacity Act they would still be assessed as having capacity to decide that they wanted an assisted death.

What is really important is that we have, over some years in this country, developed a suicide prevention strategy. I am sure that every Member in this room has had constituents approach them, as I certainly have, about family members who have committed suicide, where they were able to identify factors that made that suicide preventable. That is why it is so important that the suicide prevention strategy has been developed and continues to be developed, and why leading figures associated with that strategy—and with suicide prevention more widely—are concerned that a Bill for assisted dying may undermine suicide prevention strategies. We should take every care to prevent that in this Bill.

The current UK suicide prevention strategy cites early intervention as a priority to implement tangible actions aiming to reduce the risk factors of suicide. In line with that strategy, amendment 270 provides early intervention that aims to identify the symptoms of suicidality in a patient before the initial discussion about assisted dying can take place. At the bare minimum, someone who is severely suicidal will not be allowed to enter into conversations about receiving an assisted death.

It is important to reflect that suicidal ideation is not the same as a settled wish to die. Evidence shows that when mental health issues are treated, many patients no longer seek to end their life by suicide. Dr Price, in the oral evidence, said that 20% of terminally ill patients experienced depression, which is strongly associated with the wish to hasten death. When depression is identified and treated, the wish to die often diminishes. It is so important to distinguish and make provision for those people who are experiencing a wish to die as suicidal ideation, as opposed to the

“clear, settled and informed wish”

specified in the Bill.

Research from the Office for National Statistics, King’s College London and the University of Manchester suggests that people diagnosed with a physical terminal illness are at an elevated risk of death by suicide, because of an increase in the psychological distress that can lead to severe depression in many patients, but data from the study shows that it is a more pronounced risk of suicide in the first six months after diagnosis or first treatment and, on average, suicide rates in the first year after a terminal diagnosis were 21.6%. Of course, it is important to reflect on the fact that a diagnosis of a terminal illness can take place some years in advance of the actual prognosis that the person’s death may occur. We are looking at a group of people who are within six months of their death as far as can be established by what is, as we know, uncertain prognosis—yet the incidence of suicide among those with a terminal illness is much more weighted towards those who have just received a diagnosis. These, of course, are not the same group of people; there may well be overlap, but they are definitively not the same.

Evidence on the gov.uk website suggests that

“over half of men aged 40 to 54 who died by suicide had a physical health condition.”

We know that having a physical health condition or any kind of terminal illness has an impact, and that evidence demonstrates the impact that poor physical health has on mental wellbeing. We know that thereDr Louis Appleby, a psychiatrist who leads the national suicide prevention strategy for England and directs the national confidential inquiry into suicide, has expressed concerns that the Bill fundamentally undermines the basis of the suicide prevention strategy. Identifying and diagnosing capacity and mental disorders are easy to put down in writing, but in practice it is much harder for professionals to make a correct judgment straightaway. Where we do not want someone to die, we intervene by offering mental health support, crisis services and what we hope is a comprehensive suicide prevention strategy, but for those who qualify under this Bill, instead of that suite of support, we allow them to progress straight into discussion to end their life.

It is really important that we have had a debate today about how the discussion should be initiated and the appropriate way to do that, but what is important about amendment 270 is that it takes into account the specific factor of suicidal ideation. It would mean that whatever the outcome of the decision about how the conversation should be initiated, the possibility that the person wishes to commit suicide is nevertheless taken into account.