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

Naz Shah Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Dr Opher]

Yes, I totally accept that. The Mental Capacity Act is set so that we assume capacity and look for evidence of lack of capacity. The great danger with the amendment is that it would change a whole raft of very well used provisions. As Professor Whitty said, the Act is used up and down the country every day; I have used it myself many times, and taught it as well. If we change the emphasis from the presumption of capacity to the presumption of incapacity, which is what my hon. Friend is suggesting, that is a major change in the Act.

[Naz Shah (Bradford West) (Lab)]

Given what my hon. Friend has just said—that he accepts the premise of my hon. Friend the Member for Bexleyheath and Crayford that the doctor would have to assist—can he help me to understand where that leaves the issue of autonomy if a doctor is, as he has agreed, allowed to assist in the decision?

[Dr Opher]

The way the doctor assists, if making a mental capacity assessment, is to try to tease out the four concepts. Does the patient understand what they are being asked to agree to? Sometimes mental capacity assessments are very straightforward and last five minutes; sometimes they last an hour. I have done one that lasted about 90 minutes because it was really important to tease out whether the patient genuinely understood what they were doing. That is the sort of assistance I am talking about. It is not about trying to persuade them to make a decision that I think is the right decision; it is just making sure that they understand it, can remember it and so on.

[Naz Shah]

How does my hon. Friend respond to not one, not two, but multiple witnesses, including the Royal College of Psychiatrists, saying, absolutely contrary to what he is saying, that the Mental Capacity Act is not the right bar and that the bar is too low?

[Dr Opher]

Well, that was disputed by other psychiatrists. We are asking questions about whether the Mental Capacity Act is safe and correct for the Bill. This whole Committee is about making the Bill safe. None of us would dispute that. However, I think that if we accept the amendment, the Bill will become less safe because the amendment would change a massive piece of legislation and therefore have a number of repercussions that we do not understand.

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[Dr Opher]

I understand what the amendment is trying to do; my argument is that it will not achieve that because it will muddy the waters of a mental capacity assessment, which will make how we do it less safe. I would also like to return to Professor Whitty’s comments and to say that in the majority of cases mental capacity is very clear. It does not actually take very long to assess whether someone has mental capacity.

[Naz Shah]

Will the hon. Gentleman give way?

[The Chair]

Can the hon. Gentleman be allowed to fully answer the questions that the hon. Member for East Wiltshire and the hon. Member for Richmond Park asked, before we have an intervention on another point?

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[Dr Opher]

It is really important to understand that for the majority of people mental capacity can be assessed reasonably quickly because it is very clear whether they have it or do not have it. What we are talking about, I think, is a small proportion of patients in which it is unclear whether they have mental capacity. There is scope in the Bill for those circumstances, when the patient should be referred to an enhanced level of mental capacity assessment by a psychiatrist or a psychological nurse. In that way, it makes it much safer. We do not need to redesign the Act for that small number of patients because we already have a very safe route to assess capacity.

[Naz Shah]

I thank the hon. Gentleman for giving way; he has been generous with his time. I do not know whether the hon. Gentleman has seen the evidence from Alex Ruck Keene KC on mental capacity. He sets out very clearly the myths around mental capacity, one of which is that mental capacity is well understood. He argues that it is not. How would the hon. Gentleman respond to that?

[Dr Opher]

I think that in most cases mental capacity is very well understood, and it is very clear, as I have said. I would say that, as practising clinicians, almost every GP has to do it. I would not sign up a doctor in training if they could not do it. I think it is a little bit rich to suggest that we cannot assess capacity. I agree with many of the comments that have been made about assessing capacity in more difficult cases for most doctors, and I think we do need an avenue, in those situations, to get further opinions.

[Naz Shah]

The hon. Gentleman said it would be rich for people to say that capacity cannot be assessed. That is not the case. I am not convinced about that, and I am not sure, from the evidence I have seen, that anybody is saying that anybody is not capable of assessing capacity per se. Would the hon. Gentleman agree that the argument is about assessing capacity for this Bill in particular? That has not been tested. The Royal College of Psychiatrists is very clear, as are many other experts, including legal experts, that the Bill has not been tested for that purpose. Therefore, the Mental Capacity Act does not meet the purpose for the Bill.

[The Chair]

Order. I will give people the opportunity to explore this issue but, as I have said, interventions are not mini speeches.

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[Naz Shah]

I will pick up on some of the points to which my hon. Friend the Member for Stroud referred, given his expertise. We heard from three senior psychiatrists during the evidence sessions, who were very clear; I have already mentioned much of their evidence. The Royal College of Psychiatrists’ written evidence states:

“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of for AD/AS prior to the passing of legislation and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.”

It goes on to say that the capacity to end one’s life is “entirely different” from assessing for the capacity of deciding treatment.

The Bill moves us into new territory. We need a definition that meets the criteria of what we are assessing, which is to end one’s life. That has never been applied in this country. The Mental Capacity Act, as it stands, requires assessors to presume that someone has capacity until incapacity can be proven, as my hon. Friend the Member for Bexleyheath and Crayford referred to in moving amendment 322.

Dr Annabel Price, Professor Allan House and Professor Gareth Owen all expressed doubts about the use of the Mental Capacity Act to assess whether a person is in a fit state of mind to undertake assisted dying. Because there is nothing in the current medical assessment that requires careful explanation of these factors, there is a real worry that there will be no opportunity to change them. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground.

Professor Owen said:

“I have looked at mental capacity a lot in research, and there is no experience”.

The reference to the Mental Capacity Act in clause 3 puts us into an area where there is no experience of the central capacity issue under consideration. He said:

“It is very important that Parliament be clear-eyed about that.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q287.]

He further said that we are in “uncharted territory”, because the ideas in the Bill are very novel. That is the hub of the Bill: it requires assessors to assume capacity as a starting point. To make the Bill the safest in the world, that is not the yardstick that we should be applying, according to very senior psychiatrists across the country.

Alex Ruck Keene KC also provided evidence to the Committee. He set out some of the myths in a video. There are a few things in this for me. One is the article in The Telegraph, which senior psychiatrists alluded to, that suggested there was a shortage of specialist psychiatrists. We have already had a conversation about the shortage of judges, but we are now having a conversation about the shortage of psychiatrists. Should the measure remain in the Bill as it stands? I would like to understand from the Minister whether that is something that has been assessed, given that we do not have an impact assessment.

Alex Ruck Keene referred to the National Institute for Health and Care Research, which funded a number of research projects in 2022 under the umbrella topic of implementing the Mental Capacity Act in practice—the rationale being that

“The Mental Capacity Act…is designed to empower and protect people who may lack the mental capacity to make their own decisions about their support and treatment, ranging from everyday issues to more serious, life-changing decisions.”

Evidence has highlighted several aspects of the way that the assessments are being carried out that are not compliant with the Mental Capacity Act. If we already have issues with how the Act is being implemented in the everyday work of the NHS and psychiatrists, how many mistakes will be made if the Bill goes through as it is? How much potential is there for mistakes to be made when assessing the capacity of those who are most vulnerable?

The Care Quality Commission in its most recent “State of Care” report in October last year said:

“The Mental Capacity Act 2005 (MCA) directly affects the lives of millions of people. Everyone providing care to people over the age of 16 must be familiar with this vital piece of legislation, which introduced rights and protections for people who may lack mental capacity. A decade after the House of Lords report, we continue to find a lack of understanding of the MCA among providers.”

That is the most recent research, and it is telling us that we have not got this right.

The Mental Capacity Act was passed over 20 years ago in 2005, but is still not understood properly or being applied for the reasons it was supposed to be. If we have not got that right in 20 years, how can we as a Committee be assured that the legislation will be applied properly when it is applied to something that it has never been applied to before and that has not been tested? How can we say that we should be rejecting an amendment that would change that and raise the bar for people? Ultimately, this affects people who are vulnerable; I will come on to that in more detail in the next group of amendments.

That is a real concern, which is why I urge Committee members to support amendment 322 to get the safeguards right. We spent hours talking about capacity, but the amendments to clause 1 were not accepted. This amendment comes from experience, and I really appreciate the personal experience of my hon. Friend the Member for Bexleyheath and Crayford on this issue, because he speaks about the reality. We are not the experts, and we should be relying on the experts who give us their witness testimony.

[Daniel Francis]

In the evidence from Mencap and in large swathes of the written evidence, we have heard grave concerns from communities representing people with learning disabilities about how this legislation was enacted during covid, particularly with “do not resuscitate” notices. Evidence shows that people with learning disabilities were far more likely to have those placed on them. The written evidence we have suggests that that is due to a misinterpretation of the Mental Capacity Act or bias within the medical community. Can my hon. Friend comment on that?

[Naz Shah]

My hon. Friend makes a very valid point. Another issue that we have not got to yet, but that we will be looking at, is the doctors who do not want to take part in this process. We must consider whether there will be a bias; he is right to point that out. Will there be a subconscious bias towards helping people? My hon. Friend the Member for Stroud suggested earlier that doctors assist a person to reach a decision, according to the Mental Capacity Act. This is the crux of it for me: when a doctor is assisting a person in their best interests to come to a decision about treatment, for example, that is a different test from what we are testing here.

[Lewis Atkinson (Sunderland Central) (Lab)]

I share the concerns of my hon. Friend the Member for Bexleyheath and Crayford about the use of DNRs—what happened during covid to people, particularly those with disabilities, was a disgrace. Does my hon. Friend the Member for Bradford West accept that this is an entirely different situation, however, in that people must actively seek it, be tested multiple times, and express a wish for it? The situation with DNRs involved medical professionals making decisions on behalf of a patient without their input.

[Naz Shah]

I thank my hon. Friend for his intervention. I will be speaking to that in the next group of amendments, so I do not want to go through it in detail now, but I absolutely accept that that was a disgraceful situation—

[The Chair]

Order. Can Members please address the Chair?

[Naz Shah]

Apologies. My hon. Friend is right that those were different situations, but I remind him of the evidence that we heard from Dr Jamilla, for example. I am glad that he reminded me of this point, because although what happened in covid was done under different circumstances—I agree that what happened with DNRs was a “disgrace”, in his words—that is where the trust in NHS providers was lost. That leads me on to my next point: where there is no trust, there is vulnerability, and that vulnerability, in turn, affects capacity.

That brings me to what Alex Ruck Keene said about vulnerability. If people feel—as they did during covid-19—that they have been DNR-ed and that, as some have said, “They’re going to kill us off!”, then the vulnerability directly impacts on their capacity. I accept that, as my hon. Friend says, these are different situations, but the argument is strong and speaks to supporting this amendment.

There is a myth that mental capacity is well understood, but we have gone through that—there are a lot of myths about mental capacity. The reason that mental capacity is always difficult to assess, according to Alex Ruck Keene, is because 85% of capacity determinations by those who actually understand the law are relatively straightforward—that concurs with the point of my hon. Friend the Member for Stroud—with difficulty arising usually because of not having enough time or not listening to the person. Some research was conducted into the experience of liaison psychiatrists through an interview study across three jurisdictions, which concluded that there are four key sources of difficulty in capacity assessment, spanning both clinical and ethical domains.

Those four sources included, first, a difficulty determining whether the decision is the patient’s own or driven by illness. That is important because we are talking about people who are terminally ill, so their decision-making processes may be impacted because of that, or because there is a vulnerability—either could be possible. The 15% of mental capacity determinations that are difficult include for such people. There may also be, secondly, a difficulty in applying ethical principles or, thirdly, a difficulty in avoiding personal bias. Again, that speaks to the point of my hon. Friend the Member for Bexleyheath and Crayford—if doctors are already signed up to this Bill and believe in it, will they have a personal bias? A lot of doctors and psychiatrists—according to the last article I read—are saying that they do not agree with it.

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[Danny Kruger]

The hon. Lady is absolutely right. It is an interesting irony of the Bill that it is presented as the free choice of individuals, but actually it imposes all sorts of obligations and repercussions on other people—the very term “assisted” conveys that. Many other people will be affected by the decision to take an assisted death. She is right that it would be very helpful for the doctors to be confident that they have done their job properly because they have a clear list of communications they are expected to make.

My understanding is that doctors are indemnified against legal challenge in consequence of decisions they make around this; that is an interesting point and one that I am uncomfortable with, but we will come to that later in the Bill. Leaving lawsuits out of it, from the point of view of the doctor’s professional conduct and their peace of mind, it would be very helpful for them to have it clearly specified what information they are required to convey.

I am grateful for Members’ interventions, and I appreciate the good faith and good sense that has been spoken, but I have not yet heard any reason for objecting to this amendment, other than the possible question of its being otiose and not necessary. That is not a sufficient reason to object to an amendment. We should not be objecting simply on drafting grounds. There can be tidying-up exercises later if there is repetition. I have not heard objections to the content of the amendment, and I would very much welcome Members’ support.

[Naz Shah]

Does the hon. Member agree that the amendment ultimately aims to provide clarity, and that clarity ultimately leads to safety?

[Danny Kruger]

Exactly. A few more words of clarification should not be regarded as burdening the Bill or creating bureaucratic obstacles for doctors and patients; the amendment actually specifies more explicitly what is going on. It is almost akin to the debate we had on amendment 181 and those dangerous words “for the avoidance of doubt”; that is essentially what this amendment does, but it goes further, because it imposes clearer obligations on doctors to do their job properly.

[Jake Richards (Rother Valley) (Lab)]

Much has been covered today, and the issue of capacity was debated at length when the Committee considered clause 1, but I do have some observations.

I am sympathetic to the assertion that there should be changes to presumption and burden. Those are things that I have considered and spoken about with the promoter of the Bill and, outside the Committee, with experts who gave evidence to the Committee. I have spoken about them publicly as well; I am very sympathetic.

At the heart of this, we have two options. We could change the burden and presumption in the Mental Capacity Act 2005 for the purposes of assisted dying, rewriting 20 years of case law and medical practice. There is certainly some value to that, but that would be a radical departure from current medical practice, and there are other concerns. The alternative is to put in place rigorous processes and training around the Mental Capacity Act to ensure that it is implemented properly. After some reflection, I err on the side of the latter option, for a number of reasons.

First, I accept that there is debate among psychiatrists about this issue. We heard evidence from some who deem the Act not to be suitable for this new realm—I accept that we are entering new grounds, and I will come back to that point—but many psychiatrists and lawyers working in this area would deem it uncomfortable and unnecessary to depart from the Act.

Secondly, there is an oddity in changing presumption. There is an oddity in someone having to prove that they have capacity to fulfil their own desire. That oddity is one of the reasons that the Act is drafted as it is. It is partly—there are two sides to this coin—to ensure that there is no discrimination, partly to comply with the Human Rights Act 1998 and human rights more generally, and partly to ensure that we do not end up in a medical situation that is patrician, whereby medical doctors take an intrusive view of capacity rather than meeting the individual as they are.

Thirdly, the Bill, when amended—I will come on to the amendments that give me some comfort—will offer more safeguards than the Mental Capacity Act. Amendment 5 to clause 9(3) would ensure a further level of assessment. My hon. Friend the Member for Spen Valley has indicated that she will support that important amendment, as have all members of the Committee. If there is any doubt, there will be a further assessment by a psychiatrist. That goes some way to reassuring me that it is not necessary to rip up the burden or change the presumption in this area.

I want to make an observation about burden of proof, presumption and the nature of the assessment. Professor Whitty clarified his evidence. It is right that the burden and the presumption do not change, but of course the nature of the assessment rightly changes according to the circumstances. Every assessment of capacity is somewhat different, which is why amendment 50 is too prescriptive, in my view.

Of course, we can consider incredibly serious cases involving deprivation of liberty or the ability to conduct litigation. I have worked with parents whose children are being removed and looked at whether they have the capacity to make decisions about how they present their case. It is very dangerous to compare the severity and the profound nature of different circumstances, but let us not pretend that the Mental Capacity Act is not used to assess the most complex issues of capacity every day.

I am very sympathetic to amendment 50. I have met the hon. Member for Runnymede and Weybridge, who tabled it, and the hon. Member for Solihull West and Shirley to discuss it, but I stress that such a prescriptive provision is not appropriate for primary legislation when we are entering new ground. I accept, as hon. Members with different views have said, that we are entering new territory and that this is difficult. I accept that psychiatrists and medical practitioners will have to think long and hard about the nature of the capacity assessments, especially under clause 9(3), when that is activated. That work will have to be done. It has been set out in primary legislation through some of the training clauses, which have already been referred to.

There is no doubt that there will be a lot of work and consideration, but I do not deem it appropriate to have a clause drafted by one psychiatrist, albeit an undoubtedly esteemed and experienced one: the hon. Member for Runnymede and Weybridge, who tabled the amendment. Rather, the work needs to be done as the Bill is implemented over a two-year period. It needs to be done as part of a full consultation with psychiatrists, once the Bill has been passed, and that should be set out in guidance. That is what would usually happen with deprivation of liberty. I do not think it appropriate for primary legislation to set out the factors for a capacity assessment.

[Naz Shah]

My hon. Friend is saying that that will take two years. The MCA, which has been implemented over 20 years, is misunderstood. Does he not see the risk of two years? This is new territory, without change—

[Jake Richards]

We need to be careful when we say that the Mental Capacity Act is misunderstood, full stop. Let us be clear—

[Naz Shah]

Not full stop.

[Jake Richards]

Well, that was the sense—

[Jake Richards]

I am grateful, Mr Dowd.

The evidence that we have received is that this is a test. These are assessments that happen every day across the country. Now, there are more complex assessments, and there will without doubt be areas in which the assessment is not done as rigorously as it should be done, but that is why I am assured by the safeguards in the Bill that if there is any doubt—any doubt—as to capacity at first instance, there will be a full and thorough assessment by a psychiatrist.

Let us think that through for a minute. Any competent psychiatrist trained in this area will no doubt have a sense of what the Mental Capacity Act says and of the normal test for capacity. Someone who is seeking assistance to die from a doctor who has doubts as to their capacity will have been referred. To my mind, it is unfathomable that that assessment, at that stage, would not be rigorous and would not satisfy every Member that it had been done to the correct extent practicable.

[Naz Shah]

I absolutely agree with my hon. Friend about that in most cases, but in nine of the 10 cases that went to court, young girls were found to have capacity, but their treatment was stopped, leading to their inevitable death. That is not excluded here.

[Jake Richards]

We are debating lots of different things now, rather than just clause 3. There is an issue as to whether in those cases the individuals were found to have capacity, but we are talking about the process by which someone is found to have capacity, rather than what happens thereafter. We have had that debate, and I am happy to have it, but we are talking now about the process by which people are found to have capacity.

This is the problem with interventions: I have lost my train of thought. This is why people do not take them.

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[Jake Richards]

Yes, there are safeguards and mechanisms in the Bill to ensure that and to protect from a culture that would incentivise this practice.

[Naz Shah]

Will my hon. Friend give way?

[Jake Richards]

No, I am not going to, actually. I am taking my rights.

My final point concerns section 1(4) of the Mental Capacity Act and the discarding of the principle about whether a decision is deemed to be unwise. This is an issue we have already debated, but it is really important. Introducing a best interests test is, to my mind, impossible without ending up with a law that discriminates against certain groups. Essentially, it is impossible to do fairly.

I remain to be convinced. If there were an amendment that could do what I think the hon. Member for East Wiltshire wants, I would support it. If there were an amendment that could look into someone’s mind and make sure that they are doing this for reasons that society would deem fit, I would support it, but I think that that is impossible. What the Bill aims to do is assess a person’s capacity and ensure that they are making this decision voluntarily. It also aims to protect them from the influence of third parties and outside sources. That is the only way, if this principle is to be adhered to.

Finally, I will be voting against the amendments, but I will finish where I started. I have genuinely thought long and hard, in particular about the presumption. I have spoken to experts who disagree with me, but in my mind it comes down to whether we rip things up and start again or whether we add rigorous safeguards, practices and processes, which may be a bit more boring but will actually be more effective at protecting any patients who go down this road.

[Sojan Joseph (Ashford) (Lab)]

I rise to speak in support of the amendments. Having worked as a mental health nurse for 22 years, I completed mental capacity training many times in my career, and I carried out capacity assessments as part of my day-to-day job. I think that the capacity assessment proposed in the Bill is not safe enough. That was one of the main reasons I voted against the Bill on Second Reading. I have spoken to many people who oppose the Bill, and one of their concerns is about the capacity assessment.

We have talked about capacity assessments every day in this Committee. It is one of the key issues that we will need to resolve to strengthen the Bill if it goes through. One of the Royal College of Psychiatrists’ concerns is that capacity decisions are

“opinions with a margin of error and are time specific. A person’s capacity can change”.

I will talk about my experience with those margins of error.

A person’s capacity can be influenced by various factors, including their life circumstances, the medication they are taking or severe pain. Suicidal thoughts due to their mental state or depression can also influence their capacity. I have worked in acute mental health units. Every day, we carried out capacity assessments, including before we let someone out of the ward, whether they were admitted under the Mental Health Act or were receiving treatment as a voluntary patient. If somebody wanted to leave the ward, before the member of staff opened the door, they had to assess that person’s capacity. Sometimes a person might have said, “I am going to kill myself,” and the nurse would have had to decide whether or not they had capacity before opening the door.

My hon. Friend the Member for Bradford West has talked about unconscious bias. The initial capacity assessment when a person comes to a hospital is very important. If a doctor has assessed at the beginning that the person has capacity, the following assessment can be influenced by that initial assessment. I totally agree with my hon. Friend’s argument about unconscious bias in capacity assessments. As Members have mentioned, the Bill proposes many occasions in the process when capacity will be assessed, but I am still not confident that each capacity assessment will not be influenced by the initial assessment. The amendments would strengthen that area of concern.

[Naz Shah]

My hon. Friend is making a very important speech. Members have alluded to the provision in the Bill that the patient would be present and would potentially have an option to be reassessed. We have heard evidence from various experts on capacity, particularly on the issues of coercion and vulnerability, and doctors have told us that it takes years to build rapport with people. At the second stage, the doctor has to be somebody independent who nobody has met, so how would they be able to tease out whether that person has capacity and whether those other influences are affecting them? Does my hon. Friend share that concern?

[Sojan Joseph]

I agree that when an independent doctor comes to assess a patient’s capacity and sees them for the very first time, they are more likely to be influenced by the assessment made at the beginning by the doctor who has known them for many days, weeks or months. I agree with my hon. Friend’s argument.