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

Marie Tidball Excerpts

Tuesday 11th February 2025 Public Bill Committees

[Naz Shah (Bradford West) (Lab)]

I rise to speak in support of the amendment tabled by the hon. Member for Richmond Park.

The key word here is “capacity”. There has been much debate around the Mental Capacity Act. I will go back to the oral evidence we heard, as well as the written evidence and submissions in relation to the amendments and the clause. The psychiatrists who have advised are against it. I appreciate and recognise the contributions from my hon. Friends the Members for Penistone and Stocksbridge and for Bexleyheath and Crayford, who spoke eloquently about the word “ability” from his experience. I recognise that we have not had the opportunity to test the concept of ability.

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

I appreciate my hon. Friend bringing up that point. It is important to note that all Commonwealth jurisdictions that have assisted dying use the concept of mental capacity. We are basing the utility of the Mental Capacity Act not only on 20 years of the courts and medics dealing with it, but on the learning of other jurisdictions that have put assisted dying in place. The concept of ability, however, has no basis in law.

[Naz Shah]

I absolutely concur that we are testing in regard to other jurisdictions. In Oregon, there is not just the assessment of capacity but a referral to a counsellor.

We have had lots of evidence when it comes to capacity, and I will go back to some of the key points. The Royal College of Psychiatrists stated explicitly that the Mental Capacity Act is

“not sufficient for the purposes of this Bill.”

Explaining why, the Royal College of Psychiatrists said that assessing the capacity to end one’s life is “entirely different” from assessing for the capacity to decide treatment.

Three psychiatrists who gave evidence to the Committee —Professor Allan House, Dr Annabel Price and Professor Gareth Owen—all expressed doubts about the use of the Mental Capacity Act to assess whether a person was in a fit state of mind to undertake assisted dying. When Professor Allan House was asked why some people might choose assisted dying, he said they are vulnerable. When asked what he meant by that, he said:

“They are not people asserting autonomy and pleasure in their ability to make a choice; they are people describing to you things that are negative influences on their life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 161, Q202.]

Professor Gareth Owen said:

“I have looked at mental capacity a lot in research, and there is no experience of the decision to end one’s own life. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground. The reference to the Mental Capacity Act in clause 3 puts you into an area where there is no experience of the central capacity question under consideration. 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.]

[Dr Tidball]

On the hon. Lady’s point about being clear-eyed, it is important that we look closely at the drafting of the Bill and the utility of the Mental Capacity Act. There are eight occasions on which a person who might seek assistance can formally consider their decision making, and the Mental Capacity Act would come into play at each of those stages. A person with a terminal illness who wishes to seek assistance does not make a one-off decision; they make the decision eight times during the process, so we have a wide variety of opportunities to ensure that their consent is ongoing.

[Naz Shah]

I recognise that there are eight occasions, but when we debate later clauses I will talk about coercion and manipulation. Those also apply to the issue of capacity, and the Bill refers to them on numerous occasions.

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

Marie Tidball Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Sarah Olney]

I have a suspicion that the hon. Gentleman may have made that point already in one of his many interventions. Withdrawing treatment is not the same as someone making an informed wish to have their death assisted. That is why we need to be very careful about considering whether the Mental Capacity Act is appropriate for that kind of decision. That Act is being used in a way it was not designed for. To use this definition of “capacity” is to accept the premise that this is just like any other treatment option and not qualitatively different, and fails to recognise the complexity and gravity of the decision.

The Bill also fails to consider that there may be a risk of assessor bias—that sometimes it may well be that a doctor who makes an assessment may well have their own views about the suitability of assisted dying as an option for that particular patient. They may be in favour of it, or they may be against it. If that were to sway them towards making an assessment against capacity, that could have lots of serious implications for the patient.

I have proposed amendment 34 because I think it is the best way forward at this stage, given the variety of evidence we have had and the real difficulty for us in this room of making an appropriate determination of the extent to which the Mental Capacity Act’s use may be modified for this purpose, or of coming up with something entirely new. I think the best way forward is to give the power to the Government—to the Secretary of State—to define the term “ability” in relation to this legislation at a later date.

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

With respect to the hon. Member for Richmond Park, I do not support her amendments, which seek to replace the references in the Bill to the Mental Capacity Act with the concept of “ability”. First, medical practitioners already know, regularly use and well understand the Mental Capacity Act 2005. As a result, as Professor Chris Whitty said in evidence, where practitioners conduct such an assessment of an individual separately, they are usually in agreement in their decisions about the outcome in relation to that individual. That was also mentioned by my hon. Friend the Member for Stroud.

Secondly, the term “ability”, unlike mental capacity, is not an existing concept in law that we can draw upon in the context of complex medical decision making about consent to medical treatment. I therefore do not accept that it is a low bar.

[Sarah Olney]

Will the hon. Lady give way?

--- Later in debate ---

[Dr Tidball]

No, I will make some progress.

To replace the established concept of mental capacity with “ability” would create more problems than it seeks to solve, and is not underpinned by a clear statutory basis. Furthermore, the language the hon. Lady uses in her new clause 1 only echoes the wording of the second leg of the two-stage test in the MCA, in its language of fully understanding, using and weighing the relevant information. It does not, however, have the scaffolding and clarity of the five principles set out in the Mental Capacity Act, and it is a pale imitation of the second stage of the test of capacity, which is already in section 3 of the MCA.

Thirdly, the use and application of the Mental Capacity Act has been applied and litigated upon in our court system over the last 20 years, further nuancing its application in complex medical decision making and explicating, for example, the five principles in the MCA and the subsequent two-stage test for capacity. Contrary to what colleagues on the Opposition Benches have said already, it is used in cases where treatment is withdrawn. It is important to understand that in those circumstances, such withdrawal is not seen as an omission; it is seen as a deliberate act. It is therefore analogous to the usage in the Bill as proposed.

Fourthly, I have deep concerns that the use of the term “ability” and the concept expounded in new clause 1 imports an ableist approach, which I do not welcome, as someone who has worked in disability rights and policy for more than a decade and a half.

To return to my first argument, about the familiarity and usage of the Mental Capacity Act by medical practitioners, clinicians and the wider social care profession for two decades, many family members will be familiar with the term and used to using it as part of the wider care of people with learning disabilities, autism and mental health problems. The boundaries of those who are familiar with the concept go well beyond the walls of only medical practitioners.

In oral evidence, chief medical officer Professor Chris Whitty stated that the Mental Capacity Act

“is used up and down the country by doctors and nurses every day; they know it and they understand it. Although…it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, ‘Does this person have capacity?’, in almost all cases you will get six or seven identical answers, because people are used to using it.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.]

To unleash the tiger of an unknown and untested concept of ability into a Bill that would benefit better from the well understood, measured and principled approach of the Mental Capacity Act 2005 does not best serve the patients that I know the hon. Member for Richmond Park seeks so carefully to protect. It is therefore worth laying out the paradigm that underpins the MCA and the principles it legislates for, and why it is so important to retain this at the heart of the Bill.

The presumption of capacity in the Mental Capacity Act exists because it is considered a fundamental principle of respecting individual autonomy, meaning that every adult is assumed to have the ability to make their own decisions unless there is clear evidence proving otherwise. This protects against unnecessary interference in people’s lives and ensures that they are treated with dignity and respect, even if they may have a disability or medical condition that could potentially impact their decision-making abilities.

I want also to reflect on the robust language in clause 2(3), which states:

“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of—

(a) a mental disorder, within the meaning of the Mental Health Act 1983;

(b) a disability, within the meaning of section 6 of the Equality Act 2010.”

That provision, the tightly drawn limit on the need for the person’s terminal illness to leave them with only six months to live, and the third stage of the test—using the Mental Capacity Act to understand their decision making—mean that we have a strong set of safeguards.

[Danny Kruger]

Will the hon. Lady give way?

[Dr Tidball]

I will give way to the hon. Member for Richmond Park, who asked first.

[Sarah Olney]

The hon. Lady has moved on considerably from the point that I was going to make, so I took it that she was not going to take interventions. Although I would have liked the opportunity to respond to some of her points, I have kept my counsel. Since she has now given way, I want to make something of a point of order. The hon. Lady mentioned that she thought my use of the word “ability” was ableist, and I want to put on the record that I had absolutely no intention of it being interpreted in that way. I meant no offence, and I hope that the word would not have been considered in such a light. If that caused any offence, I apologise. I hope that the general meaning of the word “ability” is well understood in this context.

[Dr Tidball]

I am grateful to the hon. Lady for making that statement. That is not the assumption. As I will say later, the term “ableism” is very much grounded in a deficit model of disability, which assumes that somebody is not capable of doing something themselves—for instance, making important decisions—whereas the Mental Capacity Act starts from a different perspective: it presumes that the person will have the ability to do something until proven otherwise. That is why I feel that the concept of ability does not align well with what is needed in understanding and providing autonomy to people making very difficult decisions at the end of their lives.

[Danny Kruger]

The hon. Lady accurately quoted clause 2(3) about a person not being considered to be terminally ill “by reason only” of having a mental disorder or a disability. That word “only” is very important, as she acknowledged. Does she recognise that that explicitly allows for somebody whose judgment might be impaired by a mental disorder still to be eligible for an assisted death, because they would still be judged to have capacity under the terms of the Mental Capacity Act? That term “only” is in fact not a safeguard; it is an access to an assisted death for somebody with impaired judgment.

--- Later in debate ---

[Dr Tidball]

I appreciate the hon. Member’s intervention, but I do not agree. Taken together, the parameters around the six-month limit, clause 2(3) and the requirement for a mental capacity test cumulatively create a safeguard in the Bill.

Importantly, the MCA’s two-stage capacity test is already underpinned by robust safeguards, which address exactly the issue the hon. Gentleman raised. Stage one asks whether there is a disturbance or impairment in the person’s brain or mind, and stage two asks whether the disturbance or impairment is severe enough that the person cannot make a specific decision. That two-stage test already deals with the issue he raised. The references to the Mental Capacity Act in the relevant clauses of the Bill ensure, crucially, that we import that test too.

Elements of the language in the new concept of ability proposed by the hon. Member for Richmond Park appear to attempt to echo the second stage of the Mental Capacity Act test, as just described. That has four elements: understanding information about the decision to be made, retaining that information in the mind, using or weighing that information as part of the decision-making process, and communicating the decision by talking, using sign language or any other means. It is important to say that those core elements are built on the scaffolding of the five principles of the MCA, working in a progressive way.

Opposition Members talked about the unwise decision, but the principles in the Mental Capacity Act work collectively and cumulatively together. That is only one step, then, which is followed by the fact that decisions must be taken in the person’s best interest, and there is well-worn and well-trodden understanding of how we ascertain that. It is important that those things all work together. The issue is already addressed under the MCA; if we do away with the MCA, we lose not only the scaffolding of the five principles, but the important safeguards of the two-stage test.

[Naz Shah]

My hon. Friend made reference to that already being done, but where is the evidence that the capacity stage she talked about is actually happening? We had evidence from the Royal College of Psychiatrists and, as she said, Professor Chris Whitty. Where is the evidence that it is being done well, as things stand?

[Dr Tidball]

I do not have a list of the case law in front of me—I am sure it will be possible for that to be found for my hon. Friend—but it is done regularly. The Mental Capacity Act is used regularly in decisions about the withdrawal of life-support treatment. That is the case, and she is welcome to search for the case law.

[Sarah Olney]

The hon. Lady talks about the four tests and parts of the Mental Capacity Act; the point I was making was that we want to retain elements of the Act, although using it in its entirety is problematic in this context. The four functional tests about whether someone is capable of making a decision absolutely should be retained—as she said, that is well tested, it works well and people understand in a court of law exactly how to apply it—but some of the other elements of the Mental Capacity Act are problematic. That is why I seek to redraft “capacity” to “ability”—I accept that that might be a problematic word, but I hope the hon. Lady will take on board my earlier comments—and that is what is important. The hon. Lady is saying we should not take out those bits of the Mental Capacity Act that are valuable and important, and I agree.

[Dr Tidball]

I am pleased to hear the hon. Lady’s agreement. As someone who has worked in this space for a long time, I say that if she does not want to have the impact in law of putting in place a concept that would be ableist and take a deficit model of disability, we need those five principles that are already embedded in the Mental Capacity Act. We also need the stringent two-stage test, the second stage of which has the four elements that I set out. Only then can we be certain that we are approaching the paradigm of this complex and important decision making as one where we understand the autonomy and best interests of groups of people we all wish to best protect.

[Sojan Joseph]

Will my hon. Friend give way?

[Dr Tidball]

I will make some progress.

The concept set out by the hon. Member for Richmond Park is the bare bones of what is needed in the complex decision making required across various stages of the Bill. In such decision making, the MCA has a wide and well-used toolkit to determine capacity. That leads to my third point. The Mental Capacity Act has been applied and litigated in our court system over the past 20 years. The chief medical officer, Professor Sir Chris Whitty, said in his evidence that the Act

“has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.]

He continued later:

“If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 36, Q14.]

I do not see sufficient clarity in the hon. Lady’s concept as set out in the amendment.

At a later evidence session, Yogi Amin, a solicitor and partner at Irwin Mitchell, augmented Sir Chris Whitty’s argument by saying:

“I wholly recommend and support the idea…to defer to the Mental Capacity Act for capacity assessments. I have been working in this area for over 20 years, before and after the Mental Capacity Act came in, and I have done cases all the way up to the Supreme Court, as well as day-to-day different cases around the country. It is well understood how capacity assessments are done, and it is ingrained into the practice of practitioners generally and of legal practitioners in the courts.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 140, Q176.]

He continued:

“It is a well settled and understood approach to the law, and producing a new one would throw up a whole new conundrum, where people would be questioning how to approach it, etc. It is not broken—it works well.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 141, Q177.]

Finally, for further clarity, I will vote against the amendment because of the ableist assumption in both language and concept. Ableist language assumes that disabled people are inferior to non-disabled people and perpetuates deficit discourses about such groups. I believe that this does not take the approach that we see in the paradigm of the Mental Capacity Act, which puts disabled people’s choices, autonomy and control over their choices at the heart of this legislation.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

I thank the hon. Member for Richmond Park for tabling the amendments. Fundamentally, I do not agree with them, but I am grateful for her good intentions. I understand the concerns that she has raised, and she makes an eloquent argument, but I fundamentally disagree.

In my view, the amendments would only lead to abandoning the well-established principles codified within the Mental Capacity Act. They would introduce a degree of woolliness and legal uncertainty by introducing of a new term that is, as yet, undefined. That would make the operability of the Bill so much harder and would move us away from the Mental Capacity Act, which has a heritage of some 20 years and is already well established in the use of advance directives around organ transplantation, the withdrawal of treatment and the decision to undergo major operations that can have life-changing or life-limiting consequences.

--- Later in debate ---

[Danny Kruger]

That is absolutely right. I do not think best interests can apply in this case. That is why the Mental Capacity Act is being abused. As the hon. Member for Penistone and Stocksbridge said, it is supposed to be cumulative. We are supposed to consider all aspects of the Mental Capacity Act, and best interests should be part of a consideration—but how on earth does one make a best interests decision about somebody deciding to commit suicide? The hon. Gentleman is right that best interests are excluded in the Bill, so the Mental Capacity Act is not being used, except for this most basic, low-level bar to cross, which is the capacity decision.

[Dr Tidball]

For clarity, I agree with my hon. Friend the Member for Sunderland Central on what would strengthen the Bill. The exceptions only apply where the right and proper Mental Capacity Act process has been gone through and the person doing that assessment has arrived at the point that that person does not have capacity. It is only in that very narrow set of circumstances where they have determined that the person before them does not have capacity to make the decision at hand that they then go to the second look at whether making such a decision would be in the individual’s best interest. The specific exclusions listed in the MCA only apply in that stage.

What my hon. Friend the Member for Sunderland Central is suggesting is that we table an amendment that would add to the list of specific exclusions; that would further strengthen the two stages. First, there would be the full Mental Capacity Act tests that may determine that the person does not have capacity. Such an amendment would give us belt and braces in circumstances where the person does not have capacity. Under the Bill currently, the person would fall out of scope and not be able to seek assistance if it had been determined that they did not have capacity. A belt-and-braces approach would make sure that there is no circumstance in which it could be determined by a medical practitioner or any other that it was in their best interests to follow this course of action.

Under the Bill as currently drafted, those people who have not got capacity as a result of the Mental Capacity Act would not be able to have access to the provisions in the Bill. My hon. Friend the Member for Sunderland Central suggests that we augment that even further so that there can be no doubt that, where it has been determined that the person does not have capacity, following the Mental Capacity Act, we should also add a very clear exception—

[The Chair]

Order.

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

Marie Tidball Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Naz Shah (Bradford West) (Lab)]

I rise to speak in support of the amendment tabled by the hon. Member for Richmond Park.

The key word here is “capacity”. There has been much debate around the Mental Capacity Act. I will go back to the oral evidence we heard, as well as the written evidence and submissions in relation to the amendments and the clause. The psychiatrists who have advised are against it. I appreciate and recognise the contributions from my hon. Friends the Members for Penistone and Stocksbridge and for Bexleyheath and Crayford, who spoke eloquently about the word “ability” from his experience. I recognise that we have not had the opportunity to test the concept of ability.

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

I appreciate my hon. Friend bringing up that point. It is important to note that all Commonwealth jurisdictions that have assisted dying use the concept of mental capacity. We are basing the utility of the Mental Capacity Act not only on 20 years of the courts and medics dealing with it, but on the learning of other jurisdictions that have put assisted dying in place. The concept of ability, however, has no basis in law.

[Naz Shah]

I absolutely concur that we are testing in regard to other jurisdictions. In Oregon, there is not just the assessment of capacity but a referral to a counsellor.

We have had lots of evidence when it comes to capacity, and I will go back to some of the key points. The Royal College of Psychiatrists stated explicitly that the Mental Capacity Act is

“not sufficient for the purposes of this Bill.”

Explaining why, the Royal College of Psychiatrists said that assessing the capacity to end one’s life is “entirely different” from assessing for the capacity to decide treatment.

Three psychiatrists who gave evidence to the Committee —Professor Allan House, Dr Annabel Price and Professor Gareth Owen—all expressed doubts about the use of the Mental Capacity Act to assess whether a person was in a fit state of mind to undertake assisted dying. When Professor Allan House was asked why some people might choose assisted dying, he said they are vulnerable. When asked what he meant by that, he said:

“They are not people asserting autonomy and pleasure in their ability to make a choice; they are people describing to you things that are negative influences on their life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 161, Q202.]

Professor Gareth Owen said:

“I have looked at mental capacity a lot in research, and there is no experience of the decision to end one’s own life. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground. The reference to the Mental Capacity Act in clause 3 puts you into an area where there is no experience of the central capacity question under consideration. 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.]

[Dr Tidball]

On the hon. Lady’s point about being clear-eyed, it is important that we look closely at the drafting of the Bill and the utility of the Mental Capacity Act. There are eight occasions on which a person who might seek assistance can formally consider their decision making, and the Mental Capacity Act would come into play at each of those stages. A person with a terminal illness who wishes to seek assistance does not make a one-off decision; they make the decision eight times during the process, so we have a wide variety of opportunities to ensure that their consent is ongoing.

[Naz Shah]

I recognise that there are eight occasions, but when we debate later clauses I will talk about coercion and manipulation. Those also apply to the issue of capacity, and the Bill refers to them on numerous occasions.

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

Marie Tidball Excerpts

Thursday 30th January 2025 Public Bill Committees

[The Chair]

We must stick to the timing of the sittings resolution, as decided by the Committee. We have a long list of people who want to ask questions, so it will be one question with one answer; if Members could indicate who they would like to answer, that would be helpful.

Before we proceed, Dr Tidball has a declaration of interest to make.

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

I just want to make sure that it is on the record that I have been taught by Professor Hoyano; indeed, well before I was elected, she was a colleague at work.

--- Later in debate ---

[Kit Malthouse]

Q My question is to Dr Richards. Obviously health service medics are dealing with end-of-life situations at the moment—they are withdrawing treatment or declining to give treatment if they think it is futile. In those circumstances there are a set of safeguards. How do those safeguards compare with the safeguards in the Bill? From your research, do you think there is any adjustment required to the safeguards we have at the moment?

Dr Richards: Assisted dying is quite categorically different from the end-of-life scenarios you are talking about there, so you would expect a very different set of safeguards. It is a misunderstanding to think that assisted dying is of a piece with other life-ending decisions. It is really something quite different and requires a different framework.

[Dr Tidball]

Q My question is to Dr Richards, although if Claire Williams has anything to add, it would be really helpful. We have heard evidence from overseas about the value of doctors being able to have holistic discussions about end-of-life choices under an assisted dying law. What research is there on patient experiences in those jurisdictions, in particular the evidence around quantifying the experience of dignity and respect in end-of-life choice making where assisted dying is available?

Dr Richards: Quantifying dignity or respect—

[Dr Tidball]

Or real-life examples?

Dr Richards: So the question is: what is the evidence on trying to find out about this interactional space where you are asking about people’s motivations? Is that right?

[Dr Tidball]

Q There are two elements to my question. The first element is talking through the available evidence on how those holistic processes work in countries that have assisted dying. Secondly, we have heard a lot about choice from witnesses across the last two days, but a lot of the consideration about choice is about enabling patients to arrive at greater dignity and respect in their death, so it would be useful if you could reflect on any evidence around that.

Dr Richards: By holistic processes, I assume you mean the multidisciplinary team conversations that we talked about in the previous session.

[Dr Tidball]

Yes.

Dr Richards: Maybe Nancy knows the evidence on that. Talking about gaps in research, I am an anthropologist, so I am interested in the discourse and the conversations that are happening, and I think there is a lack of evidence about that. We have a lot of evidence where it is tick boxes, for example, about motivations and procedure being following. We have less qualitative, in-depth, interactional evidence about that kind of holistic decision making.

Professor Preston: We have done some research where we interviewed doctors and healthcare workers who have had those conversations. The majority decide against it, but they are still having those conversations. We also heard the experience of the bereaved family, and what it was like to have those conversations. On the whole, the conversation is predominantly about palliative care—“Can we do something different? How can we meet and assess your needs?”

In some cases, the doctors in palliative care, particularly in Switzerland, certainly would never suggest assisted dying, but if the patient asks for it, they equally do not advise them how to get an assisted death. In some cases they said they sort of consciously blocked the conversation, so that the person timed out and could not have it. The emphasis is perhaps the other way in places like the Netherlands and Belgium, where it has been around longer and is much more integrated into other services, such as care homes and palliative care, as part of a holistic assessment.

I remember visiting a team in the Netherlands, and when they got a new patient they said, “We assess them for their preferences about whether they want to die, about resuscitation, about advance care planning and about euthanasia.” My jaw dropped; I was British—this was illegal. They do it in such a natural way. They said, “We need to plan that for them, because we need to understand what is right for them.” They are not suggesting it—they are just trying to take it on board. I would say that the predominance of the conversation is about palliative care, but if the patient wants the assisted death, they either might assist—which is rare—or suggest how they go to a right-to-die association. But more likely they will still tell them how palliative care can help.

[Naz Shah]

Q Professor Preston, in your written evidence to the Committee, you said that Parliament should:

“Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.”

What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that?

Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.

--- Later in debate ---

[Sarah Olney]

Q Dr Price, I am really glad that we are able to have the Royal College of Psychiatrists in front of us today; thank you for making the time. I want to ask you about paragraph 11 of your written evidence, which states that it is the royal college’s view that the Mental Capacity Act

“is not sufficient for the purposes of this Bill.”

Could you expand a little on that and, if you feel able, make some recommendations as to what you think could be sufficient?

Dr Price: Thank you. In answering this, I will also refer back to Professor Gareth Owen’s oral submission, thinking about the purpose that the Mental Capacity Act was drawn up for and the fact that decisions about the ending of life were not one of the originally designed functions of it. We would need to think carefully about how that would then translate into a decision that was specifically about the capacity to end one’s life.

We also need to think about how that would work in practice. When we are thinking about capacity assessments, it is usually related to a treatment or a choice about a treatment or about somebody’s life—for example, changing residence. Psychiatrists and doctors and actually lots of professionals are very used to those sorts of decisions and have gathered a lot of knowledge, expertise and experience around it. This particular decision is something that in this country we do not have knowledge, expertise and experience in, and we therefore need to think about how that would look in practice.

As for advice to the Committee about what that might look like, I think that we need to gather what evidence we have—it is actually very thin—from other jurisdictions that think about capacity as part of this process. I am thinking about my PhD: I visited Oregon and talked to practitioners who were directly involved in these sorts of assessments. They described the process, but they are not using the Mental Capacity Act as their framework. They described a very interpersonal process, which relied on a relationship with the patient, and the better a patient was known, the more a gut feeling-type assessment was used. We need to think here about whether that would be a sufficient conversation to have.

One of the things that I have thought quite a lot about is how we can really understand the workings of a mental capacity assessment, and one of the best ways we can do that is to see who is not permitted to access assisted suicide because of a lack of capacity and what that assessment showed. We do not have data because the assessments for people who were not permitted to do it are not published; we cannot read them, so if this becomes legislation, one of the suggestions that I would have—it is supported by the Royal College of Psychiatrists—is to, with patients’ consent, record capacity assessments to see whether they meet the standard that is necessary. I think it is important to set out the standard necessary and the components needed to be confident about a mental capacity assessment. That will help with standards, but will also help with training, because this is new territory for psychiatry, for medicine, and to be able to think about consistency and reliability, training needs to actually see a transparency in capacity assessments.

[Dr Tidball]

Q This is a question for Dan Scorer. I have worked with a learning disability charity, My Life My Choice. I have done a lot of work with that charity on self-advocacy in the context of healthcare, so I am really keen to hear from you. We know there are excellent initiatives that focus on supporting people with learning disabilities to engage with advanced care planning, so that their preferences at the end of life can be respected. I just wondered whether you could share some lessons learned, particularly in relation to giving people with learning disabilities a voice and an opportunity to talk about what matters to them at the end of life, and say, as part of that, what we could incorporate into the regulations that are being developed as part of the Bill.

Dan Scorer: There are two key concerns I will touch on. One was covered just at the end of the last session, with the question about preliminary discussions, and that is certainly a key area that we have concern about, about how that initial conversation is initiated and structured. For us, that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion.

For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about “do not resuscitate” or “do not treat” decisions, and they were not being properly prepared for or supported in those discussions. Indeed, in one of our own care services, we had someone we support who was called up by a GP and asked whether she would want the kiss of life. The GP was trying to explain it to her excessively and she said, “No, of course not. I would not want to be kissed by someone I do not know.” Potentially, a “do not attempt CPR” notice was put in place. That example just shows the importance of preparing and supporting people for such discussions, so we want to see a right to advocacy included within the Bill to support people considering their end-of-life options.

Also, building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now. That is a huge issue that has been addressed, for example, through the Oliver McGowan mandatory training on learning disability and autism, which is rolling out across the NHS and social care services at the moment. However, in addition to the MCA, we also need to make sure that clinicians fully understand the Equality Act and the NHS accessible information standard about rights to information and support for disabled patients.

On clause 5, on training, we want to see much more specificity about the level of training that clinicians would have around the Mental Capacity Act and to make sure that they are fully aware of their responsibilities to make reasonable adjustments for patients, and to support them with understanding their choices around end-of-life care, which could include assisted dying.

[Sojan Joseph]

Q I want to come to you, Michael. The Royal College of Psychiatrists has given a written statement, which says:

“Mental disorders, such as depression, are more common in people nearing the end of their life. Delirium is more common… Hopelessness is a common symptom of depression…And people’s capacity and consent can be affected when they are going through this condition.”

In the last few days, we have heard much evidence that expressed concern about capacity assessment and that said, as Dan mentioned, there should be an advocacy service available. Rather than having the current model of two doctors and the court, if we have a panel with experts on it who can consider psychosocial assessment and capacity, would that make the Bill stronger, with more safeguarding being introduced to it?

Dr Mulholland: Sorry—can I check whether that was a question for me at the Royal College of GPs or a question for the Royal College of Psychiatrists, because I think that statement was in their evidence?

--- Later in debate ---

[Naz Shah]

Q Under clause 4(2), doctors would be allowed to raise the issue of assisted dying with a patient, unprompted. Dr Rachel Clarke gave evidence to this Committee that, in some circumstances,

“The very act of raising assisted dying in that way will make that vulnerable patient think, ‘God, is this doctor telling me that my life is not worth living any more?’”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 75, Q93.]

We heard from Dr Jamilla Hussain yesterday. She talked about mistrust of the NHS, particularly post-covid, where people had DNRs attached to them—disabled people and people of ethnic minority backgrounds in particular. Dan, are you concerned about the potential impact on people with learning disabilities?

Dan Scorer: Yes. One of the first things that I said earlier was about how the initiation of that first conversation is potentially an extremely risky and dangerous moment for people with a learning disability who are terminally ill. Your question is absolutely spot on, from the point of view that it could be highly suggestive and push people on a course that they may not want to go down. That is why I am suggesting that that initial conversation has to be incredibly well supported and structured.

There should, in our view, be an advocate who is supporting the person and preparing them for that discussion. Under the principles of the Mental Capacity Act 2005, the person should have accessible information in advance of that discussion so that they are fully informed about all their rights in terms of treatment options at end of life. That discussion with a clinician should not be taking place until the person has been able to consider that information and have support from an advocate, so when the conversation does happen the person is fully informed and has had time to think about what their wishes might be. That would reduce the risk, which is absolutely there, that people could take the initiation of that discussion as a statement, “This is what you should do.” We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.

[Dr Tidball]

Q Dan, I am really keen that we ensure that if the Bill passes, the voices of disabled people are continually involved in understanding its impact, particularly on the issue that you have just raised. Earlier, we heard evidence about implementation taskforces that are used in other jurisdictions. I am considering tabling an amendment on an advisory council. How might we ensure that the voices of people with learning disabilities can be included in such a body?

Dan Scorer: There are a couple of things that I would like to say in response. One is about clause 31, on guidance from chief medical officers. Immediately, I would say that people with a learning disability should be involved in the development of that guidance from chief medical officers. That guidance will be key to many of the issues that we have discussed.

Clause 35 is about the review of the Act. The lived experience of people is absolutely vital to that. The Bill says that it will be five years until we have that review. Our view is that that is far too long. If the Bill becomes law and if there are really serious issues and discrimination taking place against people, we will want to know that a lot earlier than in five years’ time, and we will want action to be taken. Our suggestion is that review should be earlier. We would want to see strong representation from patient groups across that, as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.

[Lewis Atkinson]

Q It is late, and I am far from being an expert on Welsh devolution, but I want to ask Professor Lewis a question, not least because we have not come to him for a little while.

Although it is not my area, I absolutely note the concerns and the discussion about respecting the democratic will of the Senedd in these matters. Would you suggest any potential avenues in the Bill to incorporate an element of positive affirmation by the Senedd, or its consent? What do you suggest we look at?

Professor Lewis: Formally, there is a need in any event for a legislative consent motion in relation to the specific bits I mentioned earlier, I have suggested one potential avenue, which is that the Senedd and Welsh Government take on responsibility for whether and when the Act commences in Wales. Another option might be to do a thorough “think once, think twice, think Wales” review to see to what extent other functions of the Secretary of State might be better exercised in Wales by the Welsh Ministers. That is a non-exhaustive list, but I hope it helps.

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

Marie Tidball Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Rachel Hopkins (Luton South and South Bedfordshire) (Lab)]

Q My question, directed at Chloe, is about the practical application of access to doctors for patients, as suggested in the proposed legislation, and how doctors have those conversations with patients—particularly, when it comes to geriatricians, older patients. We heard from somebody yesterday who said that there were concerns around how older people were treated, and the potential risk of elder abuse. I would be interested in the practical application of those conversations, in your experience.

Dr Furst: First up, a patient has to specifically ask me about voluntary assisted dying. They have got to use words that really imply that that is what they want. I will often ask any relatives to leave so that I can have a conversation just with them, to try and reduce the risk of coercion, and then invite the family back.

One of the practical things that I often ask the patient is when they started thinking about this. Is it something that they have always considered should be a right, or is it more of a new-found belief given their current suffering? I want to understand what their current suffering is. I ask specifically whether they feel a burden on their family and friends. It is an hour-plus long conversation to really understand them and their suffering.

Again, I make sure they understand all the other treatment options available to them and what good palliative care looks like. I will often be prescribing other medications as part of that good palliative care—opiates and anxiolytics. As a geriatrician, I am also making sure that their mood is also addressed, and that this is not a reactive depression. I am really doing a holistic and comprehensive geriatric assessment as part of that voluntary assisted dying assessment as well.

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

Q This question is for Dr Furst and Professor Blake. Many of us on the Committee are committed to the need to protect disabled people and to ensuring that the Bill has as many safeguards in as possible. We heard evidence yesterday that anorexia may qualify under assisted dying laws in other jurisdictions. Have there been any cases of people with anorexia accessing assisted dying in Australia, and in your view do the respective laws across Australia allow for that? Secondly, are there any lessons that we can learn on building in safeguards in relation to those with learning disabilities?

Dr Furst: All around Australia, mental health as the primary terminal illness is excluded, so anorexia by definition is excluded. I have had a patient come to me with anorexia as their terminal illness requesting voluntary assisted dying. It is a relatively easy assessment because they do not meet the standard criteria, and I was able to explain to them that they were not eligible. But it opens the opportunity to have good, in-depth conversations with them about what they are going through.

I cannot talk to the learning disabilities question, other than to say that every time a patient comes to me the assessment is directed to the patient. I saw a patient today with motor neurone disease who is on continuous bi-level positive airway pressure and is using Eyegaze. The assessment and conversations I have with her are based around what she can do for me. I have had patients who have been able to put a thumb up and down, and I have had trachy patients. I cannot necessarily talk about learning disabilities, but as a holistic practitioner you are trying to make sure that the patient in front of you understands everything and is given the full opportunity to express their wishes.

Professor Blake: I would just say—

[The Chair]

Order. I can only take one answer. I am sorry, Meredith, but we have not got time. It is one answer to one question.

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

Marie Tidball Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

We must stick to the timing of the sittings resolution, as decided by the Committee. We have a long list of people who want to ask questions, so it will be one question with one answer; if Members could indicate who they would like to answer, that would be helpful.

Before we proceed, Dr Tidball has a declaration of interest to make.

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

I just want to make sure that it is on the record that I have been taught by Professor Hoyano; indeed, well before I was elected, she was a colleague at work.

--- Later in debate ---

[Kit Malthouse]

Q My question is to Dr Richards. Obviously health service medics are dealing with end-of-life situations at the moment—they are withdrawing treatment or declining to give treatment if they think it is futile. In those circumstances there are a set of safeguards. How do those safeguards compare with the safeguards in the Bill? From your research, do you think there is any adjustment required to the safeguards we have at the moment?

Dr Richards: Assisted dying is quite categorically different from the end-of-life scenarios you are talking about there, so you would expect a very different set of safeguards. It is a misunderstanding to think that assisted dying is of a piece with other life-ending decisions. It is really something quite different and requires a different framework.

[Dr Tidball]

Q My question is to Dr Richards, although if Claire Williams has anything to add, it would be really helpful. We have heard evidence from overseas about the value of doctors being able to have holistic discussions about end-of-life choices under an assisted dying law. What research is there on patient experiences in those jurisdictions, in particular the evidence around quantifying the experience of dignity and respect in end-of-life choice making where assisted dying is available?

Dr Richards: Quantifying dignity or respect—

[Dr Tidball]

Or real-life examples?

Dr Richards: So the question is: what is the evidence on trying to find out about this interactional space where you are asking about people’s motivations? Is that right?

[Dr Tidball]

Q There are two elements to my question. The first element is talking through the available evidence on how those holistic processes work in countries that have assisted dying. Secondly, we have heard a lot about choice from witnesses across the last two days, but a lot of the consideration about choice is about enabling patients to arrive at greater dignity and respect in their death, so it would be useful if you could reflect on any evidence around that.

Dr Richards: By holistic processes, I assume you mean the multidisciplinary team conversations that we talked about in the previous session.

[Dr Tidball]

Yes.

Dr Richards: Maybe Nancy knows the evidence on that. Talking about gaps in research, I am an anthropologist, so I am interested in the discourse and the conversations that are happening, and I think there is a lack of evidence about that. We have a lot of evidence where it is tick boxes, for example, about motivations and procedure being following. We have less qualitative, in-depth, interactional evidence about that kind of holistic decision making.

Professor Preston: We have done some research where we interviewed doctors and healthcare workers who have had those conversations. The majority decide against it, but they are still having those conversations. We also heard the experience of the bereaved family, and what it was like to have those conversations. On the whole, the conversation is predominantly about palliative care—“Can we do something different? How can we meet and assess your needs?”

In some cases, the doctors in palliative care, particularly in Switzerland, certainly would never suggest assisted dying, but if the patient asks for it, they equally do not advise them how to get an assisted death. In some cases they said they sort of consciously blocked the conversation, so that the person timed out and could not have it. The emphasis is perhaps the other way in places like the Netherlands and Belgium, where it has been around longer and is much more integrated into other services, such as care homes and palliative care, as part of a holistic assessment.

I remember visiting a team in the Netherlands, and when they got a new patient they said, “We assess them for their preferences about whether they want to die, about resuscitation, about advance care planning and about euthanasia.” My jaw dropped; I was British—this was illegal. They do it in such a natural way. They said, “We need to plan that for them, because we need to understand what is right for them.” They are not suggesting it—they are just trying to take it on board. I would say that the predominance of the conversation is about palliative care, but if the patient wants the assisted death, they either might assist—which is rare—or suggest how they go to a right-to-die association. But more likely they will still tell them how palliative care can help.

[Naz Shah]

Q Professor Preston, in your written evidence to the Committee, you said that Parliament should:

“Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.”

What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that?

Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.

--- Later in debate ---

[Sarah Olney]

Q Dr Price, I am really glad that we are able to have the Royal College of Psychiatrists in front of us today; thank you for making the time. I want to ask you about paragraph 11 of your written evidence, which states that it is the royal college’s view that the Mental Capacity Act

“is not sufficient for the purposes of this Bill.”

Could you expand a little on that and, if you feel able, make some recommendations as to what you think could be sufficient?

Dr Price: Thank you. In answering this, I will also refer back to Professor Gareth Owen’s oral submission, thinking about the purpose that the Mental Capacity Act was drawn up for and the fact that decisions about the ending of life were not one of the originally designed functions of it. We would need to think carefully about how that would then translate into a decision that was specifically about the capacity to end one’s life.

We also need to think about how that would work in practice. When we are thinking about capacity assessments, it is usually related to a treatment or a choice about a treatment or about somebody’s life—for example, changing residence. Psychiatrists and doctors and actually lots of professionals are very used to those sorts of decisions and have gathered a lot of knowledge, expertise and experience around it. This particular decision is something that in this country we do not have knowledge, expertise and experience in, and we therefore need to think about how that would look in practice.

As for advice to the Committee about what that might look like, I think that we need to gather what evidence we have—it is actually very thin—from other jurisdictions that think about capacity as part of this process. I am thinking about my PhD: I visited Oregon and talked to practitioners who were directly involved in these sorts of assessments. They described the process, but they are not using the Mental Capacity Act as their framework. They described a very interpersonal process, which relied on a relationship with the patient, and the better a patient was known, the more a gut feeling-type assessment was used. We need to think here about whether that would be a sufficient conversation to have.

One of the things that I have thought quite a lot about is how we can really understand the workings of a mental capacity assessment, and one of the best ways we can do that is to see who is not permitted to access assisted suicide because of a lack of capacity and what that assessment showed. We do not have data because the assessments for people who were not permitted to do it are not published; we cannot read them, so if this becomes legislation, one of the suggestions that I would have—it is supported by the Royal College of Psychiatrists—is to, with patients’ consent, record capacity assessments to see whether they meet the standard that is necessary. I think it is important to set out the standard necessary and the components needed to be confident about a mental capacity assessment. That will help with standards, but will also help with training, because this is new territory for psychiatry, for medicine, and to be able to think about consistency and reliability, training needs to actually see a transparency in capacity assessments.

[Dr Tidball]

Q This is a question for Dan Scorer. I have worked with a learning disability charity, My Life My Choice. I have done a lot of work with that charity on self-advocacy in the context of healthcare, so I am really keen to hear from you. We know there are excellent initiatives that focus on supporting people with learning disabilities to engage with advanced care planning, so that their preferences at the end of life can be respected. I just wondered whether you could share some lessons learned, particularly in relation to giving people with learning disabilities a voice and an opportunity to talk about what matters to them at the end of life, and say, as part of that, what we could incorporate into the regulations that are being developed as part of the Bill.

Dan Scorer: There are two key concerns I will touch on. One was covered just at the end of the last session, with the question about preliminary discussions, and that is certainly a key area that we have concern about, about how that initial conversation is initiated and structured. For us, that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion.

For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about “do not resuscitate” or “do not treat” decisions, and they were not being properly prepared for or supported in those discussions. Indeed, in one of our own care services, we had someone we support who was called up by a GP and asked whether she would want the kiss of life. The GP was trying to explain it to her excessively and she said, “No, of course not. I would not want to be kissed by someone I do not know.” Potentially, a “do not attempt CPR” notice was put in place. That example just shows the importance of preparing and supporting people for such discussions, so we want to see a right to advocacy included within the Bill to support people considering their end-of-life options.

Also, building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now. That is a huge issue that has been addressed, for example, through the Oliver McGowan mandatory training on learning disability and autism, which is rolling out across the NHS and social care services at the moment. However, in addition to the MCA, we also need to make sure that clinicians fully understand the Equality Act and the NHS accessible information standard about rights to information and support for disabled patients.

On clause 5, on training, we want to see much more specificity about the level of training that clinicians would have around the Mental Capacity Act and to make sure that they are fully aware of their responsibilities to make reasonable adjustments for patients, and to support them with understanding their choices around end-of-life care, which could include assisted dying.

[Sojan Joseph]

Q I want to come to you, Michael. The Royal College of Psychiatrists has given a written statement, which says:

“Mental disorders, such as depression, are more common in people nearing the end of their life. Delirium is more common… Hopelessness is a common symptom of depression…And people’s capacity and consent can be affected when they are going through this condition.”

In the last few days, we have heard much evidence that expressed concern about capacity assessment and that said, as Dan mentioned, there should be an advocacy service available. Rather than having the current model of two doctors and the court, if we have a panel with experts on it who can consider psychosocial assessment and capacity, would that make the Bill stronger, with more safeguarding being introduced to it?

Dr Mulholland: Sorry—can I check whether that was a question for me at the Royal College of GPs or a question for the Royal College of Psychiatrists, because I think that statement was in their evidence?

--- Later in debate ---

[Naz Shah]

Q Under clause 4(2), doctors would be allowed to raise the issue of assisted dying with a patient, unprompted. Dr Rachel Clarke gave evidence to this Committee that, in some circumstances,

“The very act of raising assisted dying in that way will make that vulnerable patient think, ‘God, is this doctor telling me that my life is not worth living any more?’”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 75, Q93.]

We heard from Dr Jamilla Hussain yesterday. She talked about mistrust of the NHS, particularly post-covid, where people had DNRs attached to them—disabled people and people of ethnic minority backgrounds in particular. Dan, are you concerned about the potential impact on people with learning disabilities?

Dan Scorer: Yes. One of the first things that I said earlier was about how the initiation of that first conversation is potentially an extremely risky and dangerous moment for people with a learning disability who are terminally ill. Your question is absolutely spot on, from the point of view that it could be highly suggestive and push people on a course that they may not want to go down. That is why I am suggesting that that initial conversation has to be incredibly well supported and structured.

There should, in our view, be an advocate who is supporting the person and preparing them for that discussion. Under the principles of the Mental Capacity Act 2005, the person should have accessible information in advance of that discussion so that they are fully informed about all their rights in terms of treatment options at end of life. That discussion with a clinician should not be taking place until the person has been able to consider that information and have support from an advocate, so when the conversation does happen the person is fully informed and has had time to think about what their wishes might be. That would reduce the risk, which is absolutely there, that people could take the initiation of that discussion as a statement, “This is what you should do.” We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.

[Dr Tidball]

Q Dan, I am really keen that we ensure that if the Bill passes, the voices of disabled people are continually involved in understanding its impact, particularly on the issue that you have just raised. Earlier, we heard evidence about implementation taskforces that are used in other jurisdictions. I am considering tabling an amendment on an advisory council. How might we ensure that the voices of people with learning disabilities can be included in such a body?

Dan Scorer: There are a couple of things that I would like to say in response. One is about clause 31, on guidance from chief medical officers. Immediately, I would say that people with a learning disability should be involved in the development of that guidance from chief medical officers. That guidance will be key to many of the issues that we have discussed.

Clause 35 is about the review of the Act. The lived experience of people is absolutely vital to that. The Bill says that it will be five years until we have that review. Our view is that that is far too long. If the Bill becomes law and if there are really serious issues and discrimination taking place against people, we will want to know that a lot earlier than in five years’ time, and we will want action to be taken. Our suggestion is that review should be earlier. We would want to see strong representation from patient groups across that, as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.

[Lewis Atkinson]

Q It is late, and I am far from being an expert on Welsh devolution, but I want to ask Professor Lewis a question, not least because we have not come to him for a little while.

Although it is not my area, I absolutely note the concerns and the discussion about respecting the democratic will of the Senedd in these matters. Would you suggest any potential avenues in the Bill to incorporate an element of positive affirmation by the Senedd, or its consent? What do you suggest we look at?

Professor Lewis: Formally, there is a need in any event for a legislative consent motion in relation to the specific bits I mentioned earlier, I have suggested one potential avenue, which is that the Senedd and Welsh Government take on responsibility for whether and when the Act commences in Wales. Another option might be to do a thorough “think once, think twice, think Wales” review to see to what extent other functions of the Secretary of State might be better exercised in Wales by the Welsh Ministers. That is a non-exhaustive list, but I hope it helps.

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

Marie Tidball Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Sarah Sackman]

Q Lord Sumption and Dr Graham, you will have seen that clauses 26 and 27 include criminal offences. Do you have any views on the operability of those criminal offences?

Dr Graham: My only contribution here can be that similar offences in other jurisdictions have been held to be perfectly compatible with European human rights law.

Lord Sumption: I have no problem about the criminal-isation of people who abuse or distort the system, which is what those two clauses envisage.

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

Q Dr Graham, thank you for your written evidence, which was very helpful and stated your view that the strength of the clauses in the Bill make it compatible with the European convention on human rights in relation to article 2 on the right to life and article 14 on freedom from discrimination. Can you explain why you hold that view? What has been the view of the European Court of Human Rights in relation to assisted dying laws in other signatory states?

Dr Graham: There are two main challenges to this legislation, and to legislation like it, in relation to the European convention. As you say, one relates to article 2 and one relates to article 14. The article 2 challenge can be dismissed fairly quickly, because we have authority from the European Court saying that

“the right to life enshrined under Article 2 could not be interpreted as per se prohibiting the conditional decriminalisation of euthanasia.”

As a matter of precedent, that is fairly clear.

The trickier argument comes with article 14, which is the anti-discrimination right. There is an argument that goes something like this—I hope that those who hold this view think I am giving it a good airing. By allowing some groups to access assisted suicide, but not other groups—in this Bill, allowing terminally ill adults who meet the criteria in the Bill but not non-terminally ill adults who do not meet those criteria—you are treating two different groups in different ways, and that is discriminatory. There is an argument that, because of that, the courts would find that the Bill is unlawful and needs to be expanded—that groups outside of the terminally ill that meet the criteria of the Bill need to be given access to assisted suicide. I think that argument does not work for a few reasons, chief among which is that in our jurisdiction treating different groups differently is not unlawful. Treating different groups differently without good justification is unlawful.

The question of justification, while it is for judges and the courts, is a question on which judges have deferred heavily to Parliament, especially in areas that involve difficult social, ethical or moral issues. If I may be forgiven for reading from a court’s judgment one more time, in the case of SC the Supreme Court said:

“The ordinary approach…gives appropriate weight to…the primary decision-maker”—

the primary decision maker being Parliament—

“a degree of weight which will normally be substantial in…matters raising sensitive moral or ethical issues.”

We can all agree that this Bill involves sensitive moral or ethical issues.

My point is that when it comes to justification, courts are very deferential to Parliament. Courts think that Parliament should be deciding whether treating two groups in different ways is justified or not. That is why, in my view, there is no real truck to the argument that article 14—the anti-discrimination right—will be operative and cause the Bill to be declared incompatible with the convention in any way. I hope that is an adequate summary of my view.

[Dr Tidball]

Q My next question is to Fazilet Hadi and Baroness Falkner. First, I am passionate about ensuring that the Bill creates the opportunity to hear the voices of disabled people in monitoring the impact of its implementation, should it be passed by Parliament, and the treatment of disabled people in the NHS as a result. What structure or mechanism could work to facilitate that? Secondly, would that be applicable to all protected characteristics under the Equality Act, or do disabled people have a specific status that needs special treatment?

Fazilet Hadi: We have a principle in the disabled people’s movement: “Nothing about us without us”. I suppose a simple answer to that question is that whether it is the discussions on this Bill and the voice of disabled people in shaping it, or in monitoring, disabled people must always be at the table. As you all probably know, Disability Rights UK and other disabled people’s organisations oppose the Bill, and I hope I get a chance to say why later.

Should the Bill go through, it would be good to see a monitoring mechanism. I cannot say what that should be, but it would be good to see disabled people shape it. Some 45% of older people are disabled people, so disabled people are going to be very affected by the Bill. It is often our experience that we are the last people who are spoken to; maybe that is what is behind the question. We should of course be at the table now in respect of whatever mechanisms, and in the shaping of any implementation, should the Bill be passed. But as I said, we are opposed.

Baroness Falkner: Can I touch on clause 26 and the earlier question, as well as article 2 rights? Parliament should appreciate that coercion or pressure is not necessarily something that is applied directly by other individuals. The UN published an open letter in advance of the Canadian legislation that pointed out that people with disabilities, older people, and especially older people with disabilities, may feel subtly pressured to end their lives prematurely due to additional barriers, as well as the lack of appropriate services and support. Article 2 goes to the heart of appropriate services and support, as well as the general right to life. It is important that all practical social conditions, support, care and services are in place so that people with serious or terminal illness can decide how and when to end their life freely and without coercion.

On coercionary pressure, we have heard recently about social care provisions. Social care is an integral part of this story, because the data shows that it is older disabled people—disabled across a spectrum including mental health, dementia and so on—who are likely to be in care or to require social services. If we are not going to get the result of those reforms until 2028, we are told, with potentially no legislation in place for another couple of years after that—say, 2030 or 2031—then all of you in Parliament need to think about whether this is putting the cart before the horse. In deciding on these provisions, which are integrally linked to the other aspects of disability and access to care—I hope we will come on to the variable treatment of palliative care later—you need to think about whether this is the right order of things. I will leave it at that and pick up other related points later.

[Dr Tidball]

Q With respect, my question was about whether you think that, should the Bill go through Parliament, there should be some kind of body, possibly an advisory council, that disabled people in particular should be involved with. Your other point speaks to some evidence that we heard yesterday and earlier about the anchoring, where there is assisted dying in the legal system, of the quality and level of provision of palliative care. I would be grateful if you could speak to the point of my original question, which was about the need for some kind of advisory body that includes disabled people, should the Bill pass.

Baroness Falkner: Had there been a Public Bill consultation on the Bill, you would have heard from the different players that need to be consulted. We do not have an opinion on the kind of advisory body, because we would find it difficult to see where it would fit in with the provisions of this particular Bill, but a public consultation in advance of the Bill being written would have been the way to deal with that.

[Danny Kruger]

Q Dr Graham, on the points about article 14, I very much appreciate and welcome your belief in parliamentary sovereignty, and the suggestion that the courts should listen to Parliament—most of us agree with you on that—but it is a big hope. They do have the opportunity, and have demonstrated their power, to object to statute on the basis of the ECHR. As you said, they could allow assisted dying, and indeed discrimination within an assisted dying law, if there was some justification for it.

You are presumably aware of Lord Neuberger’s judgment in the Nicklinson case. He said that there was

“significantly more justification in assisting people to die”

who have long-term chronic conditions and are going to suffer for years than for people who are on the verge of death. I also point out Lord Bingham’s judgment in the Pretty case, which suggested there would be discrimination against people who are unable to perform the final act themselves. Surely, then, there is a very strong case to be made under the ECHR that the Bill would be discriminatory. I would value your response on that, and maybe from Lord Sumption too, if he wants to come in.

My second question is to you both, on article 2. If it were to be allowed, the safeguards that would be required —I shall quote from the Mortier case, which you know well—would be that

“medical professionals are complying with the free, informed, explicit and unambiguous decision of their patients”

without pressure and abuse. Do you therefore accept that this comes down not just to the safeguards in theory, but to how they actually operate in practice? We have heard very serious concerns on that front. Are you confident that the courts would allow this? That is, of course, assuming this is an NHS service, because it could be that they decide it should not be.

Dr Graham: The takeaway message from cases like Nicklinson and others, both at the domestic level and the European level, is that this is a decision for politicians and a decision for Parliament—you mentioned the sovereignty of Parliament—regardless of what Lord Bingham and Lord Neuberger might think personally about or, I suppose, obiter about the relationship between discrimination law and the provisions that were looked at in those cases. For the reasons that I set out earlier, on the justification question, judges in our jurisdiction are heavily deferential towards the decision of our elected Parliament. In any future challenge, and there probably will be a challenge—we do not know, but there is nothing to stop someone from bringing one—the courts will adopt the same line of thinking.

I agree with you completely that the theory and the practice must both be taken into account when assessing whether there are adequate safeguards for the purpose of article 2. All I want to note is that in the Mortier case, which you mentioned—in which the Belgian legislation and its compatibility with article 2 were challenged before the Strasbourg Court—the Court found that there were sufficient safeguards in that legislation. That is despite the fact that if we put the Belgian legislation that the Court was looking at and this piece of legislation side by side, this legislation contains, at least in theory, more and stronger safeguards.

The Belgian legislation did not have a waiting period; did not require judicial approval; was not restricted to a terminal illness; and was not restricted to adults only. Yet the European Court said that there were sufficient safeguards for the purposes of article 2. At least from a precedent-based perspective, I think there is a strong argument for saying yes, the Bill complies with both article 14 and with article 2.

Lord Sumption: I have read Dr Graham’s evidence, and obviously have listened to him this afternoon. I agree with it in its entirety. Dr Graham points out the additional layer of safeguarding in the form of clause 12, but I do not understand him to be suggesting that without clause 12 the Act, if the Bill became an Act, would be defective on human rights grounds.

I also agree with Dr Graham on the question of the likely approach of the courts. The courts would be dealing with legislation that reflected a balance between two very powerful but contradictory moral instincts, both of them fundamental to our legal and social culture. That is not a context in which the courts are going to feel that they ought to be putting their own oar in.

I would also point out that, since the Nicklinson case, there have been a number of decisions of the Supreme Court—two in particular: the Shamima Begum case and the Child Poverty Action Group case on the two-child limit—in which the Supreme Court has expressly said that in issues of this kind, the courts should not devise policies of their own, independent of policies that can be discerned in parliamentary legislation. It is therefore even less likely now that the courts would intervene on human rights grounds than it was at the time of Nicklinson.

--- Later in debate ---

[Tom Gordon]

Q I would like to direct my question to Dr Neerkin. We have heard from lots of different jurisdictions where assisted dying is commonplace now. In those areas, the actual uptake is very small. That is in places where they have a lot less in the way of safeguards than we do in this Bill. Can you comment on the fact that we are talking about a very small group of people for whom palliative care would not be enough anyway? This option might give those people peace of mind and enable them to have a good period of life while they have it, and then choose to leave on their terms.

The point I am trying to get to is, we keep talking about big populations and groups, but in your professional experience, how wide or narrow does the Bill need to be? Do the safeguards in it not already restrict it to a very small group of people whose needs would not necessarily be met by palliative care?

Dr Neerkin: I agree. People who request assisted dying are a tiny proportion—we see that in other jurisdictions. Of those that request it, the number that go through with it is even smaller. As I said earlier, people want to live—people do not want to die. But what people do not want to have is a prolonged death where they are suffering—they want control. In my experience, the number of those that actually really wish for it, ask for it, and would potentially go through with it, is small.

[Dr Tidball]

Q This is a question for Dr Neerkin. That was extremely helpful. We know that Tōtara hospice in New Zealand—one of the largest hospices there—has said that it does not think that assisted dying and palliative care are counter to each other, and that a system can work where they are running side by side. Can you touch on, first, any evidence we have from countries that have adopted assisted dying that demonstrates that marginalised groups are seeking it much more regularly than those with more economic resources; and, secondly, choice and the ability for assisted dying to give greater dignity to individuals seeking that choice?

Dr Neerkin: Some of that question, at least the first part, would have been better posed to the people from Australia and America this morning, who probably have more details on it. I have looked extensively at the data from Oregon, and there is not a skew towards the elderly, the disabled, people of different minorities or people in poverty. I do not think there is a skew. You actually tend to find that people are younger and from wealthier and more educated backgrounds. Looking at it from that side of things, they are probably more knowledgeable in that background. Could you repeat the second part of your question?

[Dr Tidball]

Q The second part of my question was this. You talked very eloquently, as did Professor Tom Shakespeare this morning, about the Bill enabling choice for those who want it, particularly those who believe it would give them a more dignified death, but could you expand on how it provides that element of dignity?

Dr Neerkin: Part of it is about choice and control, which I mentioned before. People are very vulnerable. We have heard a lot about vulnerability, but not many people have defined what vulnerability in a dying person is. I think for a lot of people it is about that total loss of control and loss of self and who they are—that they are just another number. For them, it is about trying to regain some of that control and autonomy and being able to voice for themselves what they want. That is what I tend to see that people want back at the end of life.

[The Chair]

This will be the last question for today.

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

Marie Tidball Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Sean Woodcock (Banbury) (Lab)]

Q Coercion is one of the main issues that people who are concerned about the Bill raise in opposition to it. That would include myself. We had many distinguished witnesses this morning, and the view was that coercion is “rare” in healthcare generally. It was almost given across that we did not need to worry about it, because staff are so well trained in safeguarding and so on, and they have such a level of experience. What are the views of the panel on that? Is coercion something that we should really not be so concerned about?

Dr Clarke: Based on my clinical experience, I would push back on that in the strongest terms. I am the kind of doctor who believes there is nothing to be gained from sugar coating reality. We have to be absolutely honest with patients and the public about shortcomings, failings and areas where my profession and the rest of the NHS are getting things wrong.

It is my clinical experience that not only are the majority of doctors not necessarily trained in spotting coercion explicitly, but they are often not trained explicitly in having so-called advance care planning conversations with patients around the topic of death and dying, and how a patient would like the end of their life to proceed. It is almost impossible for me to overstate how much avoidable suffering occurs right now in the NHS not because of a lack of resources for palliative care—although that is an enormous problem—but because of a lack of confidence, skill and expertise among the medical profession writ large with these very difficult conversations.

We are all familiar with the idea of death and dying being a taboo in society. People are scared of it, and they hesitate to bring it up with their friends and family. In my experience, many medical students and doctors also suffer from that anxiety. They are scared, and they find it a taboo subject. What that means is that sometimes coercion occurs because the doctor—the consultant responsible for this person’s care—will not even bring up the fact that they think the patient is dying, because it is an uncomfortable conversation. Conversely, I have worked with senior hospital consultants in the NHS who have deliberately prevented our team from accessing their patients, because they believe that the hospital palliative care team wants to kill the patients, and that if I go and see the patient, I will give them a lethal dose of drugs.

These are the kinds of extraordinary misunderstandings and failures to prioritise patient autonomy that are happening now. That is even before we get started on conversations around whether someone would like to consider assisted dying, so it is a huge problem.

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

Q My question is for Dr Ahmedzai. The Select Committee inquiry into assisted dying received evidence that there were not any indications of palliative or end-of-life care deteriorating in quality or provision following the introduction of assisted dying. Indeed, the introduction of it has been linked with an improvement in palliative care in several jurisdictions. I have two questions, if I may. What more could the Bill do to strengthen the available choice at the end of life and the regulation of these choices as set out in the codes of practice? If you could answer that one first, I will come back to my second question.

Dr Ahmedzai: I have visited many of the jurisdictions around the world—such as Oregon, where I met the original judge who brought in the law, as well as the doctors, nurses and patients involved—and it was clear to me that if patients had not accessed palliative care, they were pointed towards it. Obviously, you cannot force anybody to go and have palliative care, but they were certainly informed about it.

In the Netherlands, I commend a system for doctors called SCEN—support and consultation on euthanasia in the Netherlands. These are trained doctors working for the equivalent of the BMA, I believe, who, as Dr Clarke has referred to, are going and supporting doctors who are not familiar with things. They often come from a background of palliative care and pain medicine, so they are making options available that other doctors in the process, for instance, have not brought up. In Australia, there is clear evidence that palliative care is becoming more available.

The European Association for Palliative Care produced a report more than 10 years ago in which it examined all the countries in Europe at the time, and it found there was evidence that palliative care was improving in scope and availability alongside the forms of assisted dying that were happening there. I am reassured that bringing in some form of assisted dying, particularly the form proposed here, would be a boost to palliative care.

One of the things I would like to see is that anybody who is involved in the process is constantly asking the patient, “What about palliative care? Have you actually accessed it?” Right now, if they have not raised their hand and asked for assisted dying, no one has that conversation with them. They are in a vacuum and a bubble, and not receiving palliative care, whereas this provision would possibly make it more available.

[Dr Tidball]

I have two follow-up questions on that basis.

[The Chair]

Order. I do not want to squash any discussion, but I ask Members and the panel to bear in mind that we have until 3.15 pm for this session. I will be as lenient as I can with questions.

[Dr Tidball]

Q On the basis of your 39 years of experience and the Select Committee evidence that I mentioned earlier, do you acknowledge that improvements on both assisted dying and palliative care can run in parallel and do not need to be mutually exclusive?

Dr Ahmedzai: In the interests of brevity, yes.

[Dr Tidball]

Q You talked about the role of medical practitioners discussing this issue, which is of course in clause 4(2) of the Bill. Paragraph 4.2 in your own evidence was very helpful in discussing that, as it makes it clear that it is

“entirely consistent with current medical practice and with compassionate care”

to raise assisted dying. You also said that raising the topic did not have adverse effects. How could clause 4 be strengthened to ensure that patients are presented with a range of treatment options at the end of life and relay any concerns that others have raised about suggestibility where this is mentioned in isolation?

Dr Ahmedzai: That is a complicated question. The first point is that right now, as Dr Clarke pointed out, it is scary to patients to be told that they may actually be receiving palliative care. When it has been mentioned—by an oncologist, for example—many patients say, “I do not want that. Don’t let them come anywhere near me or anywhere near my relatives.” It is not unusual that people may have an adverse reaction to just hearing about the service, but here the difference is that the person has actually asked for it.

I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies. It used to be thought that if you mentioned suicide to somebody, it would give them the idea, but of course it does not; it saves them, because they say, “Thank you. Yes, I was having those thoughts.” Bringing up assisted dying is never going to be harmful to the person, even if they had not thought of it. They will just say, “Well, it is not for me.”

[Dr Tidball]

That is very helpful; thank you.

[Rebecca Paul (Reigate) (Con)]

Q My question is to Dr Sarah Cox. What do you think will be the impact on palliative care of introducing assisted dying?

Dr Cox: Professor Ahmedzai has talked about the evidence, which was written up to 10 years ago. There is actually more recent evidence, looking at the last 10 years, where European countries and American states have been assessed in terms of the development of palliative care services. That more recent evidence shows that although palliative care services have improved in those countries where assisted dying has been implemented, they have improved three times more in countries where assisted dying has not been implemented. The evidence from that study shows that the implementation of assisted dying is impeding the development of palliative care services.

The other thing we are really concerned about is the impact on funding. It is unclear how this is going to be funded. It looks as if it is going to be within healthcare, and if so, there will inevitably be competition with other aspects of healthcare, including palliative care, for those limited resources. There are finite numbers of doctors, nurses and side rooms in hospitals. If palliative care and assisted dying were funded from the same pot, I think there would be a massive detrimental effect on palliative care because we would be in competition for a limited resource.

I am also concerned about our palliative care workforce, which we know is already in crisis. Eighty-three per cent. of our members told the Royal College of Physicians in 2023 that they had staffing gaps, and more than 50% were unable to take leave because of those staffing gaps. Forty-three per cent. said that if assisted dying were implemented within their organisation, they would have to leave. This has a massive impact on palliative care, in terms of its potential to develop both our funding and our workforce, who are really concerned about this.

--- Later in debate ---

[Naz Shah]

Q Following up on that, in the cases in which you authorised prosecution for murder or manslaughter, were issues of coercion ever involved? What were the bold points—the top lines—of those prosecutions?

Sir Max Hill: That small handful of cases involved an elderly couple where either he—it was usually a he—or she had chosen to bring to an end the life of their lifelong partner and, once that act had been carried out, claimed that it was an assisted suicide in circumstances where the surviving partner was merely carrying out the wish of the person now dead. There are a handful of cases in which that is clearly wrong and should not be accepted and where murder should be the offence brought before the court.

The point, though, is that throughout the time that I served as DPP—and, indeed, the time served by all my predecessors—we did not have the coercion offences created by the Bill, which I suggest would be a significant advance, and nor did we have a legal system in which the investigation was taking place before the death. It was the other way around. In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill, if I can put it that way, is that that will be reversed, and scrutiny will be before death. In the case of coercion, where it fits the new potential clauses, prosecutions can—and, I am sure, will—be brought.

[Dr Tidball]

Q It is extremely helpful to understand the opportunity for scrutiny before death. Building on that point, are there any safeguards around those practices that are not currently included in the Bill but should be, particularly around detecting coercion and exploring alternative care options? I also have one follow-up question, if I may.

Sir Max Hill: I think that coercion and the coercion clauses in the Bill should be read alongside the capacity clauses. What we are looking for, as required by clause 1(1) and clause 1(2), is a clear, settled and informed wish, voluntarily made without coercion or pressure. Those aspects were taken, at least in part, from the Crown Prosecution Service guidance on 1961 Act cases. Capacity involves understanding information, retaining it, using it and communicating it. If those hallmarks are not there, you may be in a situation where you should be considering coercion. I think you read the two together.

To answer your question directly, the criminal liability clauses—clause 24, and the new offences in clauses 26 and 27—are robust. As a matter for your scrutiny, they are aspects that we do not have in the law at present. There is, of course, the addition of clause 36, under which you cannot be a witness or a proxy to the procedure that is enshrined in the Bill if you are too close to the terminally ill person. That is another hallmark of the Bill that will hedge against coercion.

[Dr Tidball]

Q I want to follow up, because this is really important in strengthening the Bill. Based on your prosecutorial experience, what key elements should be present in the definitions of coercion, pressure and dishonesty? I also have a bit of a technical question, if I may. Do you think they would be better placed in clause 26 or in clause 40, under interpretation? I am asking what more you can say on the key elements of coercion, pressure and dishonesty, and I am asking about their placement in the Bill to make them as accessible as possible to medical practitioners and patients who will want to rely on it.

Sir Max Hill: My inclination is that clause 26, which is part of the full body of the Bill, is the right place for this. As with the interpretation clause, clause 40, and as with the way we interpret statute as a matter of course, there are aspects of other statutory offences or Acts of Parliament that help us when we are seeking to determine what coercion is. The creation of the offence of coercion and control, now very commonly used in domestic abuse investigations and prosecutions, has brought us into this territory. It is not beyond the wit of anybody who seeks to use and interpret this Bill to also look for other parts of statute that deal with coercion.

I make the same point about capacity. What is in the Bill is very slender, one might say, because clause 3 simply invites the reader to look across to the Mental Capacity Act 2005. But that Act is very clear on what mental capacity is and how it is defined. I think what I am saying is that it is a drafting point, and I am not a parliamentary draftsman, but I do not have a problem with the definitions of dishonesty, coercion and pressure being in clause 26, where they are. It is not the only place one would look, though; there are other sources.

[Dr Tidball]

Q You have helpfully acknowledged the link that we need to make on coercion to strengthen this, but on the other two elements—dishonesty and pressure—is there anything else that we need to look to in order to make this more robust?

Sir Max Hill: “Dishonesty” is a term of art in common use, but it is also a term of statute. Anyone investigating or, still more, prosecuting would understand what dishonesty means. I accept that there is a wider point—not so much for interpretation but for understanding—that this Committee may want to consider, of how much of that existing definition needs to be imported into the Bill. As with mental capacity, I would suggest that, beyond perhaps the odd footnote, it is not necessary for you as a Committee to define again what dishonesty means, because we have it elsewhere.

Alex Ruck Keene: On pressure, I think the Committee would be really assisted by having a look at the learning of the High Court judges exercising their jurisdiction under the inherent jurisdiction in relation to people who are said to be vulnerable. They have developed an awful lot of tools, where they are trying to look at people in complicated situations—potentially, but not necessarily, with impairments—who are caught up in what one person brilliantly described as being caught in a spider’s web. Those are the sorts of sets of tools used when judges are trying to work out what is going on, and whether it is the side of the line we consider to be acceptable or the side of the line we consider unacceptable—because “pressure” is doing a lot of work there.

[Jake Richards (Rother Valley) (Lab)]

Q Thank you all for your written evidence. Sir Nicholas, in your helpful written evidence, you adopt Sir James Munby’s criticism of the current proposal for judicial oversight, and you instead recommend what you call a “Spanish-style specialist panel”. Could you set out for the Committee what you see as the benefit of that approach compared to what might be described as the stark judicial oversight of the High Court judge?

Sir Nicholas Mostyn: One per cent would be 6,000 deaths a year. If each took two hours to process in the High Court—you have to read it and hear the evidence; one of them has to be oral and you have to write a judgment—that is 12,000 hours. Each High Court judge does 1,000 hours in court—outside court, they do lots—so you are talking about nearly three quarters of the entire family division doing nothing but this. It is impossible, in my opinion, for this to be done by the High Court. It should be done in the Spanish way by a panel that is set up. In Spain, the chairperson of the regulator sets up a panel for each case—a doctor and a lawyer. They have to agree and they check that everything has been done lawfully. They do not make any value judgment about whether it is in the person’s best interest. They check that it has all been lawfully.

Interestingly, in 2023, 10% extra denials were done by the panel. I do not know whether that was because they were concerned about voluntariness or whether they were concerned about suffering—because the criterion is suffering there—but an extra 10% was done by the panel, so the panel was not just rubber-stamping. They denied an extra 10%. I believe that an ad hoc system like that, with a doctor and a lawyer doing a check, would be the best way of doing it. The High Court—trust me, I’ve just come from there—has not got the capacity to deal with 6,000 cases of this nature.

--- Later in debate ---

[Jake Richards]

Forgive me, Mr Dowd. I meant that, in terms of the assisted dying process in the Bill, there is no automated mechanism for family members, or indeed any third parties, apart from the doctors, to have notice of this intention. Is there a concern, regarding this appeal point, that perhaps interested parties would not know?

Sir Max Hill: I would suggest that the key to this is in clause 12(5), and that is why I have recommended just striking out the words “High Court” and putting in the word “panel”, and then reading the whole of clause 12 as amended, with those situations in which there are steps that “must” be taken—and there are many—and those in which there are steps that “may” be taken.

In clause 12(5), following that logic, we would imagine that a panel, just as the High Court,

“may hear from and question, in person, the person who made the application”

but

“must hear from…the coordinating doctor”.

The appellate mechanism, which I agree there needs to be, will be looking sharply at the operation of that subsection. In other words, when the panel made its decision to refuse, on what basis did it make that decision and from whom had it heard? We can well imagine situations in which a co-ordinating doctor, having taken his or her own steps to ascertain the views of the nearest and dearest, would satisfy the panel as to what the views of the family are. The reverse of that is that there is no indication here that, having gone all the way through the panel, the family would have been made aware or considered at all. I think that that will be a rare scenario, but I am not a medical professional. I think you can cover that, perhaps with some changes here or there on what you impose on the panel as a mandatory duty and what you leave by way of discretion, subject to the rules of procedure that the panel would then adopt.

[Dr Tidball]

Q I have a question for Sir Max Hill and Alex Ruck Keene. Your insight on clause 12 has been helpful. What procedures would you recommend be adopted for testing and, if need be, challenging the evidence as part of an evidentiary process linked to the panel that you set out?

Alex Ruck Keene: This is, for the moment, predicated on the fact that we are still in the High Court, as opposed to slightly making up policy on the fly about a panel. Assuming it is the High Court, it seems to me the Court has to be discharging a properly inquisitorial jurisdiction, which means it has to be armed with the tools to do that, which includes arming it with the tools to call for its own evidence. It also seems to me that the High Court would have to be armed with its own ability to not just receive evidence from one side and have someone testing it. That then brings you to the only player in town who could possibly do that, which would be the Official Solicitor as advocate to the Court.

I do not want to emphasise too much the question of resources, because if Parliament thinks this is sufficiently important, the resources will be voted through. But it is vitally important to note that the Official Solicitor is completely overloaded, and we would be asking the Official Solicitor to act as advocate to the Court in every single one of these cases. You could not have it be optional; you cannot say that it is some and not others. If it is going to be inquisitorial, the High Court has to have the ability to say, “This is one-sided; someone needs to tease it out,” so the Official Solicitor would have to be funded to be advocate to the Court and, if necessary, instruct lawyers in every single case.

Sir Max Hill: The model that I was espousing would not necessarily involve the Official Solicitor at all. It would make no draw on the administration of the Court or any officer of the Court, still less full-time judges. It would allow the appointment of recently retired judges, as we have in a number of scenarios—surveillance commissioners, for example—and a fresh administration. With that, as with the High Court model at the moment, there is the primary set of provisions, which Parliament must impose, and it is important that that is sufficient for what Alex called an inquisitorial function. Those are in part mandatory—those things that the panel must be satisfied about, which are set out in clause 12(3). Then there are those that are discretionary, which are set out in clause 12(5).

What sits between the two is very important. That is currently expressed as “Rules of Court”, but it would be the rules of the panel, or the commission that appoints the panels. In a court scenario, we are all familiar with criminal procedure rules and civil procedure rules; that is the secondary stage that is reached once the primary legislation has been fixed. That, too, would apply to the commission or panel process, but I do not necessarily think that it would involve using existing, paid judicial resources at all.

[The Chair]

Unless there are any more pressing questions—

--- Later in debate ---

[Naz Shah]

I beg to move an amendment to motion (a), at end insert—

“Richard Robinson, CEO of Hourglass, Cherry Henry-Leach of STADA, Standing Together Against Domestic Abuse ”.

I completely agree with my hon. Friend the Member for Spen Valley and I am grateful to her for adding Professor Jane Monckton-Smith to the witness list. I also absolutely agree that the evidence we receive is really valuable.

This is an amendment tabled yesterday by the Mother of the House, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott) yesterday, to which I have added my name.

The reason for the amendment is that Hourglass focuses on domestic abuse of older people and it has particularly noted that the majority of such victims are female. Hourglass estimates that one in six elderly people are victims of coercion in the UK. This raises serious concerns that such people could be pushed into ending their lives if the Bill is enacted. Hourglass has not published a public opinion on the Bill.

Standing Together Against Domestic Abuse has said that

“We must echo concerns raised by the VAWG sector”—

the violence against women and girls sector—

“and disability activists about the bill’s current safeguards. There is insufficient clarity on what constitutes coercion and limited reflection on carer capacity to support someone terminally ill. Without robust measures, there is a real risk that assisted dying could be exploited as a tool for coercion or even femicide.

Statistics show that over 88% of unlawful ‘mercy killings’ are perpetrated by men towards women, often involving violent means. These troubling realities demand urgent consideration in shaping this legislation.

We also highlight the health sector’s role in identifying domestic abuse. With 80% of victim-survivors having their first or only point of contact in healthcare, it is critical that health professionals are equipped to identify and respond to abuse.

We call on the Government to ensure the proposed bill includes stringent safeguards and that healthcare systems are equipped to recognise and prevent the potential misuse of assisted dying. Femicide is already a crisis in the UK, and no law should inadvertently contribute to its escalation.”

All my adult life, I have had experience of dealing with domestic abuse and coercion, and I draw on that experience to speak to these amendments. Although Professor Jane Monckton-Smith is an expert, she is an academic. These two organisations work with people who have been victims of abuse.

In addition, we had an official meeting with the Clerk to discuss the proposals for Committee sittings. It was said at that meeting that we would only have witnesses who would give evidence, particularly in person, that would contribute to the deliverability and the workability of the Bill. Since then, we have had families added to the list of witnesses. That adds weight to the argument that we should have witnesses who are providing a service to victims directly.

[Dr Tidball]

I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.

I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.

[Kit Malthouse]

I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.

Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.

[Naz Shah]

There is nothing in my amendment that suggests Professor Monckton-Smith is not capable in her expertise. I am asking for other expertise to be brought to the table. Yes, there is the argument that people can submit written evidence—but so could every witness we have heard from today, and that we will hear from tomorrow and the day after. If that is the yardstick, is this just a tokenistic exercise? I would argue that for women in particular, who are the victims of domestic abuse—

[Dr Tidball]

I note that Laura Hoyano, who is giving evidence on Thursday, is a domestic abuse barrister. She has also been involved in inquiries on child sexual abuse, and has a great range of experience in that area. She will bring that to the table as a practising barrister working closely on such cases.

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

Marie Tidball Excerpts

Tuesday 28th January 2025 Public Bill Committees

[Sean Woodcock (Banbury) (Lab)]

Q Coercion is one of the main issues that people who are concerned about the Bill raise in opposition to it. That would include myself. We had many distinguished witnesses this morning, and the view was that coercion is “rare” in healthcare generally. It was almost given across that we did not need to worry about it, because staff are so well trained in safeguarding and so on, and they have such a level of experience. What are the views of the panel on that? Is coercion something that we should really not be so concerned about?

Dr Clarke: Based on my clinical experience, I would push back on that in the strongest terms. I am the kind of doctor who believes there is nothing to be gained from sugar coating reality. We have to be absolutely honest with patients and the public about shortcomings, failings and areas where my profession and the rest of the NHS are getting things wrong.

It is my clinical experience that not only are the majority of doctors not necessarily trained in spotting coercion explicitly, but they are often not trained explicitly in having so-called advance care planning conversations with patients around the topic of death and dying, and how a patient would like the end of their life to proceed. It is almost impossible for me to overstate how much avoidable suffering occurs right now in the NHS not because of a lack of resources for palliative care—although that is an enormous problem—but because of a lack of confidence, skill and expertise among the medical profession writ large with these very difficult conversations.

We are all familiar with the idea of death and dying being a taboo in society. People are scared of it, and they hesitate to bring it up with their friends and family. In my experience, many medical students and doctors also suffer from that anxiety. They are scared, and they find it a taboo subject. What that means is that sometimes coercion occurs because the doctor—the consultant responsible for this person’s care—will not even bring up the fact that they think the patient is dying, because it is an uncomfortable conversation. Conversely, I have worked with senior hospital consultants in the NHS who have deliberately prevented our team from accessing their patients, because they believe that the hospital palliative care team wants to kill the patients, and that if I go and see the patient, I will give them a lethal dose of drugs.

These are the kinds of extraordinary misunderstandings and failures to prioritise patient autonomy that are happening now. That is even before we get started on conversations around whether someone would like to consider assisted dying, so it is a huge problem.

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

Q My question is for Dr Ahmedzai. The Select Committee inquiry into assisted dying received evidence that there were not any indications of palliative or end-of-life care deteriorating in quality or provision following the introduction of assisted dying. Indeed, the introduction of it has been linked with an improvement in palliative care in several jurisdictions. I have two questions, if I may. What more could the Bill do to strengthen the available choice at the end of life and the regulation of these choices as set out in the codes of practice? If you could answer that one first, I will come back to my second question.

Dr Ahmedzai: I have visited many of the jurisdictions around the world—such as Oregon, where I met the original judge who brought in the law, as well as the doctors, nurses and patients involved—and it was clear to me that if patients had not accessed palliative care, they were pointed towards it. Obviously, you cannot force anybody to go and have palliative care, but they were certainly informed about it.

In the Netherlands, I commend a system for doctors called SCEN—support and consultation on euthanasia in the Netherlands. These are trained doctors working for the equivalent of the BMA, I believe, who, as Dr Clarke has referred to, are going and supporting doctors who are not familiar with things. They often come from a background of palliative care and pain medicine, so they are making options available that other doctors in the process, for instance, have not brought up. In Australia, there is clear evidence that palliative care is becoming more available.

The European Association for Palliative Care produced a report more than 10 years ago in which it examined all the countries in Europe at the time, and it found there was evidence that palliative care was improving in scope and availability alongside the forms of assisted dying that were happening there. I am reassured that bringing in some form of assisted dying, particularly the form proposed here, would be a boost to palliative care.

One of the things I would like to see is that anybody who is involved in the process is constantly asking the patient, “What about palliative care? Have you actually accessed it?” Right now, if they have not raised their hand and asked for assisted dying, no one has that conversation with them. They are in a vacuum and a bubble, and not receiving palliative care, whereas this provision would possibly make it more available.

[Dr Tidball]

I have two follow-up questions on that basis.

[The Chair]

Order. I do not want to squash any discussion, but I ask Members and the panel to bear in mind that we have until 3.15 pm for this session. I will be as lenient as I can with questions.

[Dr Tidball]

Q On the basis of your 39 years of experience and the Select Committee evidence that I mentioned earlier, do you acknowledge that improvements on both assisted dying and palliative care can run in parallel and do not need to be mutually exclusive?

Dr Ahmedzai: In the interests of brevity, yes.

[Dr Tidball]

Q You talked about the role of medical practitioners discussing this issue, which is of course in clause 4(2) of the Bill. Paragraph 4.2 in your own evidence was very helpful in discussing that, as it makes it clear that it is

“entirely consistent with current medical practice and with compassionate care”

to raise assisted dying. You also said that raising the topic did not have adverse effects. How could clause 4 be strengthened to ensure that patients are presented with a range of treatment options at the end of life and relay any concerns that others have raised about suggestibility where this is mentioned in isolation?

Dr Ahmedzai: That is a complicated question. The first point is that right now, as Dr Clarke pointed out, it is scary to patients to be told that they may actually be receiving palliative care. When it has been mentioned—by an oncologist, for example—many patients say, “I do not want that. Don’t let them come anywhere near me or anywhere near my relatives.” It is not unusual that people may have an adverse reaction to just hearing about the service, but here the difference is that the person has actually asked for it.

I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies. It used to be thought that if you mentioned suicide to somebody, it would give them the idea, but of course it does not; it saves them, because they say, “Thank you. Yes, I was having those thoughts.” Bringing up assisted dying is never going to be harmful to the person, even if they had not thought of it. They will just say, “Well, it is not for me.”

[Dr Tidball]

That is very helpful; thank you.

[Rebecca Paul (Reigate) (Con)]

Q My question is to Dr Sarah Cox. What do you think will be the impact on palliative care of introducing assisted dying?

Dr Cox: Professor Ahmedzai has talked about the evidence, which was written up to 10 years ago. There is actually more recent evidence, looking at the last 10 years, where European countries and American states have been assessed in terms of the development of palliative care services. That more recent evidence shows that although palliative care services have improved in those countries where assisted dying has been implemented, they have improved three times more in countries where assisted dying has not been implemented. The evidence from that study shows that the implementation of assisted dying is impeding the development of palliative care services.

The other thing we are really concerned about is the impact on funding. It is unclear how this is going to be funded. It looks as if it is going to be within healthcare, and if so, there will inevitably be competition with other aspects of healthcare, including palliative care, for those limited resources. There are finite numbers of doctors, nurses and side rooms in hospitals. If palliative care and assisted dying were funded from the same pot, I think there would be a massive detrimental effect on palliative care because we would be in competition for a limited resource.

I am also concerned about our palliative care workforce, which we know is already in crisis. Eighty-three per cent. of our members told the Royal College of Physicians in 2023 that they had staffing gaps, and more than 50% were unable to take leave because of those staffing gaps. Forty-three per cent. said that if assisted dying were implemented within their organisation, they would have to leave. This has a massive impact on palliative care, in terms of its potential to develop both our funding and our workforce, who are really concerned about this.

--- Later in debate ---

[Naz Shah]

Q Following up on that, in the cases in which you authorised prosecution for murder or manslaughter, were issues of coercion ever involved? What were the bold points—the top lines—of those prosecutions?

Sir Max Hill: That small handful of cases involved an elderly couple where either he—it was usually a he—or she had chosen to bring to an end the life of their lifelong partner and, once that act had been carried out, claimed that it was an assisted suicide in circumstances where the surviving partner was merely carrying out the wish of the person now dead. There are a handful of cases in which that is clearly wrong and should not be accepted and where murder should be the offence brought before the court.

The point, though, is that throughout the time that I served as DPP—and, indeed, the time served by all my predecessors—we did not have the coercion offences created by the Bill, which I suggest would be a significant advance, and nor did we have a legal system in which the investigation was taking place before the death. It was the other way around. In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill, if I can put it that way, is that that will be reversed, and scrutiny will be before death. In the case of coercion, where it fits the new potential clauses, prosecutions can—and, I am sure, will—be brought.

[Dr Tidball]

Q It is extremely helpful to understand the opportunity for scrutiny before death. Building on that point, are there any safeguards around those practices that are not currently included in the Bill but should be, particularly around detecting coercion and exploring alternative care options? I also have one follow-up question, if I may.

Sir Max Hill: I think that coercion and the coercion clauses in the Bill should be read alongside the capacity clauses. What we are looking for, as required by clause 1(1) and clause 1(2), is a clear, settled and informed wish, voluntarily made without coercion or pressure. Those aspects were taken, at least in part, from the Crown Prosecution Service guidance on 1961 Act cases. Capacity involves understanding information, retaining it, using it and communicating it. If those hallmarks are not there, you may be in a situation where you should be considering coercion. I think you read the two together.

To answer your question directly, the criminal liability clauses—clause 24, and the new offences in clauses 26 and 27—are robust. As a matter for your scrutiny, they are aspects that we do not have in the law at present. There is, of course, the addition of clause 36, under which you cannot be a witness or a proxy to the procedure that is enshrined in the Bill if you are too close to the terminally ill person. That is another hallmark of the Bill that will hedge against coercion.

[Dr Tidball]

Q I want to follow up, because this is really important in strengthening the Bill. Based on your prosecutorial experience, what key elements should be present in the definitions of coercion, pressure and dishonesty? I also have a bit of a technical question, if I may. Do you think they would be better placed in clause 26 or in clause 40, under interpretation? I am asking what more you can say on the key elements of coercion, pressure and dishonesty, and I am asking about their placement in the Bill to make them as accessible as possible to medical practitioners and patients who will want to rely on it.

Sir Max Hill: My inclination is that clause 26, which is part of the full body of the Bill, is the right place for this. As with the interpretation clause, clause 40, and as with the way we interpret statute as a matter of course, there are aspects of other statutory offences or Acts of Parliament that help us when we are seeking to determine what coercion is. The creation of the offence of coercion and control, now very commonly used in domestic abuse investigations and prosecutions, has brought us into this territory. It is not beyond the wit of anybody who seeks to use and interpret this Bill to also look for other parts of statute that deal with coercion.

I make the same point about capacity. What is in the Bill is very slender, one might say, because clause 3 simply invites the reader to look across to the Mental Capacity Act 2005. But that Act is very clear on what mental capacity is and how it is defined. I think what I am saying is that it is a drafting point, and I am not a parliamentary draftsman, but I do not have a problem with the definitions of dishonesty, coercion and pressure being in clause 26, where they are. It is not the only place one would look, though; there are other sources.

[Dr Tidball]

Q You have helpfully acknowledged the link that we need to make on coercion to strengthen this, but on the other two elements—dishonesty and pressure—is there anything else that we need to look to in order to make this more robust?

Sir Max Hill: “Dishonesty” is a term of art in common use, but it is also a term of statute. Anyone investigating or, still more, prosecuting would understand what dishonesty means. I accept that there is a wider point—not so much for interpretation but for understanding—that this Committee may want to consider, of how much of that existing definition needs to be imported into the Bill. As with mental capacity, I would suggest that, beyond perhaps the odd footnote, it is not necessary for you as a Committee to define again what dishonesty means, because we have it elsewhere.

Alex Ruck Keene: On pressure, I think the Committee would be really assisted by having a look at the learning of the High Court judges exercising their jurisdiction under the inherent jurisdiction in relation to people who are said to be vulnerable. They have developed an awful lot of tools, where they are trying to look at people in complicated situations—potentially, but not necessarily, with impairments—who are caught up in what one person brilliantly described as being caught in a spider’s web. Those are the sorts of sets of tools used when judges are trying to work out what is going on, and whether it is the side of the line we consider to be acceptable or the side of the line we consider unacceptable—because “pressure” is doing a lot of work there.

[Jake Richards (Rother Valley) (Lab)]

Q Thank you all for your written evidence. Sir Nicholas, in your helpful written evidence, you adopt Sir James Munby’s criticism of the current proposal for judicial oversight, and you instead recommend what you call a “Spanish-style specialist panel”. Could you set out for the Committee what you see as the benefit of that approach compared to what might be described as the stark judicial oversight of the High Court judge?

Sir Nicholas Mostyn: One per cent would be 6,000 deaths a year. If each took two hours to process in the High Court—you have to read it and hear the evidence; one of them has to be oral and you have to write a judgment—that is 12,000 hours. Each High Court judge does 1,000 hours in court—outside court, they do lots—so you are talking about nearly three quarters of the entire family division doing nothing but this. It is impossible, in my opinion, for this to be done by the High Court. It should be done in the Spanish way by a panel that is set up. In Spain, the chairperson of the regulator sets up a panel for each case—a doctor and a lawyer. They have to agree and they check that everything has been done lawfully. They do not make any value judgment about whether it is in the person’s best interest. They check that it has all been lawfully.

Interestingly, in 2023, 10% extra denials were done by the panel. I do not know whether that was because they were concerned about voluntariness or whether they were concerned about suffering—because the criterion is suffering there—but an extra 10% was done by the panel, so the panel was not just rubber-stamping. They denied an extra 10%. I believe that an ad hoc system like that, with a doctor and a lawyer doing a check, would be the best way of doing it. The High Court—trust me, I’ve just come from there—has not got the capacity to deal with 6,000 cases of this nature.

--- Later in debate ---

[Jake Richards]

Forgive me, Mr Dowd. I meant that, in terms of the assisted dying process in the Bill, there is no automated mechanism for family members, or indeed any third parties, apart from the doctors, to have notice of this intention. Is there a concern, regarding this appeal point, that perhaps interested parties would not know?

Sir Max Hill: I would suggest that the key to this is in clause 12(5), and that is why I have recommended just striking out the words “High Court” and putting in the word “panel”, and then reading the whole of clause 12 as amended, with those situations in which there are steps that “must” be taken—and there are many—and those in which there are steps that “may” be taken.

In clause 12(5), following that logic, we would imagine that a panel, just as the High Court,

“may hear from and question, in person, the person who made the application”

but

“must hear from…the coordinating doctor”.

The appellate mechanism, which I agree there needs to be, will be looking sharply at the operation of that subsection. In other words, when the panel made its decision to refuse, on what basis did it make that decision and from whom had it heard? We can well imagine situations in which a co-ordinating doctor, having taken his or her own steps to ascertain the views of the nearest and dearest, would satisfy the panel as to what the views of the family are. The reverse of that is that there is no indication here that, having gone all the way through the panel, the family would have been made aware or considered at all. I think that that will be a rare scenario, but I am not a medical professional. I think you can cover that, perhaps with some changes here or there on what you impose on the panel as a mandatory duty and what you leave by way of discretion, subject to the rules of procedure that the panel would then adopt.

[Dr Tidball]

Q I have a question for Sir Max Hill and Alex Ruck Keene. Your insight on clause 12 has been helpful. What procedures would you recommend be adopted for testing and, if need be, challenging the evidence as part of an evidentiary process linked to the panel that you set out?

Alex Ruck Keene: This is, for the moment, predicated on the fact that we are still in the High Court, as opposed to slightly making up policy on the fly about a panel. Assuming it is the High Court, it seems to me the Court has to be discharging a properly inquisitorial jurisdiction, which means it has to be armed with the tools to do that, which includes arming it with the tools to call for its own evidence. It also seems to me that the High Court would have to be armed with its own ability to not just receive evidence from one side and have someone testing it. That then brings you to the only player in town who could possibly do that, which would be the Official Solicitor as advocate to the Court.

I do not want to emphasise too much the question of resources, because if Parliament thinks this is sufficiently important, the resources will be voted through. But it is vitally important to note that the Official Solicitor is completely overloaded, and we would be asking the Official Solicitor to act as advocate to the Court in every single one of these cases. You could not have it be optional; you cannot say that it is some and not others. If it is going to be inquisitorial, the High Court has to have the ability to say, “This is one-sided; someone needs to tease it out,” so the Official Solicitor would have to be funded to be advocate to the Court and, if necessary, instruct lawyers in every single case.

Sir Max Hill: The model that I was espousing would not necessarily involve the Official Solicitor at all. It would make no draw on the administration of the Court or any officer of the Court, still less full-time judges. It would allow the appointment of recently retired judges, as we have in a number of scenarios—surveillance commissioners, for example—and a fresh administration. With that, as with the High Court model at the moment, there is the primary set of provisions, which Parliament must impose, and it is important that that is sufficient for what Alex called an inquisitorial function. Those are in part mandatory—those things that the panel must be satisfied about, which are set out in clause 12(3). Then there are those that are discretionary, which are set out in clause 12(5).

What sits between the two is very important. That is currently expressed as “Rules of Court”, but it would be the rules of the panel, or the commission that appoints the panels. In a court scenario, we are all familiar with criminal procedure rules and civil procedure rules; that is the secondary stage that is reached once the primary legislation has been fixed. That, too, would apply to the commission or panel process, but I do not necessarily think that it would involve using existing, paid judicial resources at all.

[The Chair]

Unless there are any more pressing questions—

--- Later in debate ---

[Naz Shah]

I beg to move an amendment to amendment (a), at end insert—

“Richard Robinson, CEO of Hourglass, Cherry Henry-Leach of STADA, Standing Together Against Domestic Abuse ”.

I completely agree with my hon. Friend the Member for Spen Valley and I am grateful to her for adding Professor Jane Monckton-Smith to the witness list. I also absolutely agree that the evidence we receive is really valuable.

This is an amendment tabled yesterday by the Mother of the House, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott) yesterday, to which I have added my name.

The reason for the amendment is that Hourglass focuses on domestic abuse of older people and it has particularly noted that the majority of such victims are female. Hourglass estimates that one in six elderly people are victims of coercion in the UK. This raises serious concerns that such people could be pushed into ending their lives if the Bill is enacted. Hourglass has not published a public opinion on the Bill.

Standing Together Against Domestic Abuse has said that

“We must echo concerns raised by the VAWG sector”—

the violence against women and girls sector—

“and disability activists about the bill’s current safeguards. There is insufficient clarity on what constitutes coercion and limited reflection on carer capacity to support someone terminally ill. Without robust measures, there is a real risk that assisted dying could be exploited as a tool for coercion or even femicide.

Statistics show that over 88% of unlawful ‘mercy killings’ are perpetrated by men towards women, often involving violent means. These troubling realities demand urgent consideration in shaping this legislation.

We also highlight the health sector’s role in identifying domestic abuse. With 80% of victim-survivors having their first or only point of contact in healthcare, it is critical that health professionals are equipped to identify and respond to abuse.

We call on the Government to ensure the proposed bill includes stringent safeguards and that healthcare systems are equipped to recognise and prevent the potential misuse of assisted dying. Femicide is already a crisis in the UK, and no law should inadvertently contribute to its escalation.”

All my adult life, I have had experience of dealing with domestic abuse and coercion, and I draw on that experience to speak to these amendments. Although Professor Jane Monckton-Smith is an expert, she is an academic. These two organisations work with people who have been victims of abuse.

In addition, we had an official meeting with the Clerk to discuss the proposals for Committee sittings. It was said at that meeting that we would only have witnesses who would give evidence, particularly in person, that would contribute to the deliverability and the workability of the Bill. Since then, we have had families added to the list of witnesses. That adds weight to the argument that we should have witnesses who are providing a service to victims directly.

[Dr Tidball]

I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.

I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.

[Kit Malthouse]

I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.

Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.

[Naz Shah]

There is nothing in my amendment that suggests Professor Monckton-Smith is not capable in her expertise. I am asking for other expertise to be brought to the table. Yes, there is the argument that people can submit written evidence—but so could every witness we have heard from today, and that we will hear from tomorrow and the day after. If that is the yardstick, is this just a tokenistic exercise? I would argue that for women in particular, who are the victims of domestic abuse—

[Dr Tidball]

I note that Laura Hoyano, who is giving evidence on Thursday, is a domestic abuse barrister. She has also been involved in inquiries on child sexual abuse, and has a great range of experience in that area. She will bring that to the table as a practising barrister working closely on such cases.

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

Marie Tidball Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Juliet Campbell]

Q So rather than going straight to “I have made this request, or this has been suggested to me, and this is the path we are going down,” there is something that should happen in between.

Professor Ranger: Well, you would not really want any clinician to push this view on any patient. It has to come from the person themselves. That is the key thing around capacity and autonomy. I do not think that people should ever say to a patient or an individual, “Is this something you have considered?” It has to be led by the patient.

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

Q Professor Ranger, may I pick up on the points that Glyn Berry made about the different circumstances in which patients find themselves? The barriers to healthcare as a result of health inequalities, access to education and disability are well documented. How could your members help to remove the barriers for such groups in access to the provision of assisted dying?

Professor Ranger: It is vital that any of those barriers be removed and that we always maintain outstanding care at the end of someone’s life. The reality is that the majority of palliative care is given by nursing staff, whether it is in the community, in someone’s home, in a hospice or in a hospital. It is key that it be an expertise and a specialist practice in which someone has extra training and extra education. The skills of listening to patients, advocating for them and ensuring that they are pain-free at the end of their life—these are skills that nurses have now, and it is vital that our nursing members maintain them. They are often the one a patient will speak to at 3 in the morning when no one is there.

As Glyn said, it is vital that the wider team be included in the Bill. The Bill talks about the guidance and recommendations being for the chief medical officer, but I think it is absolutely vital that the chief nursing officer be a key part of the guidance and the drawing up of any care, because even in these circumstances it is nursing staff who will give the majority of the care.

[Dr Tidball]

Q To pick up on your important point about advocacy, how would your members detect coercion, undue pressure or dishonesty by family members or other supporting parties on which the patient was relying in relation to seeking assisted dying? At what point would there be a report to the police by your members?

Professor Ranger: Safeguarding is part of our professional responsibility now. Whether it is for a child, an adult or an elderly person, part of our role is to be vigilant against financial misconduct, physical abuse and mental health abuse: any of those things is a responsibility of every nurse now. It is a very good and simple process. You do not have to investigate or give a judgment; you need to refer it to be investigated. That takes the pressure off an individual clinician. Our job is to be vigilant and to refer safeguarding anywhere we think that there is any form of abuse. I think that that process would remain and could be part of how we do things now.

[Dr Tidball]

Q Just to follow up on that, because it is really important: do you think your members would have the ability to pick up on such coercion, dishonesty and pressure from other parties potentially being placed on a patient who is seeking assisted dying? What other training or support would be needed for your members?

Professor Ranger: We would want more support. I am not going to say that we always get it right. Sometimes things happen that we miss and we do not report. I cannot say that we get it right 100% of the time. When the Bill talks about education and training for medical staff, it is absolutely vital that nursing staff are included because we will need to be vigilant around anyone feeling they are a burden.

The Bill would add other skills that we want to make sure that nurses are included in. Education for medical staff is absolutely pertinent for nursing staff, so that nurses build on skills they already have. There will be a difference between the care of someone wanting assisted dying and palliative care. Those are two slightly different skills and it is really important that they are not always lumped together. Being involved in assisted dying will require a specialist skill and specialist training, and we would very much want nursing to be included within that.

[Dr Tidball]

Q But you believe that your members would be able to pick up on and identify issues such as coercion?

Professor Ranger: I do. They are professionals, and I believe they would be able to.

[Jack Abbott]

Q My question, which relates to some of the points made earlier, is for Glyn Berry. Your organisation has recommended a new role: the approved palliative care professional. To go into the detail a bit more, you make a number of recommendations on what that role would include, such as ensuring that the person has the mental capacity to make the decision. First, are you therefore saying that this new role should sit alongside the two-doctor process, which has already been outlined in terms of final decision making? If the approved palliative care professional felt, for example, that this person did not have mental capacity, should they be able to, as it were, stop the process?

Secondly, what level of training would that person need in terms of time? We have, for example, been talking about a two-year process. If this new role came into effect, how long would that person need to be trained for to fulfil it adequately? Thirdly, do you have a sense of how many of these professionals we would need to make this a functioning system? Those are three separate questions.

Glyn Berry: To answer the first question, we feel, for the reasons I outlined earlier, that the role of an approved palliative care professional would sit beside the role of clinicians, balancing clinical and social observation and assessment.

In terms of the training, we, as social workers, already have continuous training opportunities to become best interests assessors, practice educators and approved mental health practitioners, so we envisage that the training would very much be along those lines. Doing those roles currently requires a course of training at university.

Our thoughts, at the moment, are that that would be for palliative care social workers, whether they are in charities, trusts or local authorities, or are independent, because that is where things sit with us at the moment and we know our roles. We like to think that it would roll out to other professionals, however, because assessing capacity is not specifically the role of the social worker; other professionals are able to, and do, complete capacity assessments.

It is quite difficult to answer your question in terms of numbers at the moment. If we were talking specifically about palliative care social workers, we currently have around 200 members in our association, but there will be other people out there who are not members and we do not know who they are. It is a role that could expand.

One of our other recommendations is that palliative and end-of-life care, as an aside to your question, is also brought into qualifying roles for people in training, such as doctors, nurses and allied health professionals, as well as social workers. We could see that happening in the future.