Terminally Ill Adults (End of Life) Bill (Twenty-eighth sitting)

Daniel Francis Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

The second principle is equally critical: NHS funding must not be diverted to external organisations that profit from, or are sustained by, the business of ending lives. Every pound spent on healthcare is a pound fought for by taxpayers, by clinicians and by patients. To direct that money into the coffers of private providers, whose incentives might lean towards efficiency over compassion, risks betraying the NHS’s founding ethos. We cannot allow a system where the end of life becomes a revenue stream and where the decision to die is shaped, however subtly, by a balance sheet rather than a patient’s free will.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

My hon. Friend the Member for Luton South and South Bedfordshire referred to IVF. My wife and I have been through IVF, and what exists is exactly what the hon. Member for Richmond Park described. There is an annual show at Olympia where it has been commercialised and it is put to people, “Why not go down this route? Why not go down that route?” Does the hon. Member agree that that is really not a route we want to go down?

[Sarah Olney]

I am grateful to the hon. Gentleman for that point, because it provides a comparison. We are talking about there potentially being a market for end-of-life services. I do not think that is the way we should be going.

--- Later in debate ---

[Liz Saville Roberts]

I appreciate the hon. Lady’s comments. I think there is a lesson to be learned. I understand that the legislation is unprecedented in coming through the private Member’s Bill route. After this, we will have to think about how we deal with such legislation because we are feeling our way. I appreciate the opportunity to work with the co-operation of colleagues on something for which there is no road map, but I fear, although I also appreciate, that we are making the road map as we go.

[Daniel Francis]

It is a pleasure to serve under your chairship, Ms McVey. I genuinely did not intend to speak today, but the debate, particularly the speech by the hon. Member for Richmond Park and the intervention from my hon. Friend the Member for Luton South and South Bedfordshire, has brought me to my feet.

It was 13 or 14 years ago that my wife and I embarked on the IVF road. It never worked—our children came naturally in the end—but I know the pain and despair of that process. Although I do not call into question the efficacy of any doctor, some companies, looking to their profit margins, will always prey on people.

We have had discussions today about the regulations to be made under new clause 36, but we need some clarity on Report. I referred to the annual fertility show at the Kensington Olympia; I have checked, and it is still held. I visited it about 13 years ago. Frankly, it is complete marketisation. People who are already on their knees and really depressed are left feeling that companies are simply trying to make a profit out of them. People can already book their tickets for the event in May and navigate a path through it: there are expert-led seminars, real stories, whereby people connect with others who have been through the process, wellbeing workshops and more than 70 exhibitors. Of course, they are all paying a fee to be there, and they all aim to have made a profit by the end.

Our first set of IVF treatment was free on the NHS. We paid £7,000 for our second, which was again through the NHS. We went through several visits to NHS and private providers to assess whether we were willing to pay a top-up for a slightly better service. I really did not intend to speak this morning, but I wonder whether, in the final part of the process that we are considering, there would be the sort of upsetting process that has taken root in the fertility industry in this country. We need more clarity on that by Report.

[Naz Shah]

I stopped myself intervening on my hon. Friend the Member for Sunderland Central; I had lots of questions, and he has confused me even more. He referred to the provision in clause 8(6)(d) about the doctors being different. If I am right, healthcare providers such as Aspire or Ramsay Health Care could be commissioned to deliver the services. If so, does that mean, as the hon. Member for East Wiltshire suggested, that we will need two separate doctors or providers because the co-ordinating doctor and the second doctor cannot be linked? That confuses me even further. After what we have heard this morning, it strikes me that we do not have any proposed model and the measure has not been thought through. It speaks to the idea that this is not right. We are spending hours and hours going through hypotheticals and possibilities—this could happen, that could happen—but there is nothing actually before us.

Terminally Ill Adults (End of Life) Bill (Twenty-second sitting)

Daniel Francis Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Naz Shah]

She beats my record for sure. I assure the Committee that my comments on new clause 17(a) will be brief in comparison with my previous speech.

Yesterday, my hon. Friend the Member for Ipswich and I disagreed on a point of detail. In fact, he was right and I was wrong. As he said, a provision in paragraph 4 of new schedule 1 allows the Secretary of State to dismiss a bad commissioner if the circumstances merit it. Although I still maintain my position that too much power is being given to a single person, I thank my hon. Friend both for pointing that out and for the courteous way in which he did so.

The hon. Member for Reigate has spoken very eloquently in defence of her amendment. Just to recap, new clause 17, tabled by my hon. Friend the Member for Spen Valley, would allow a person seeking an assisted death to appeal to the commissioner if a panel refuses their request. However, it would not allow any other person to lodge such an appeal.

By contrast, new clause 17(a) would allow several other parties to lodge such an appeal, including the two doctors who took part in the process, the applicant’s next of kin or relatives, or anyone who took part in the proceedings before the panel or who gave evidence to the panel. I acknowledge that there are genuine arguments against accepting new clause 17(a), and I have listened to them in detail and given them sincere thought. The family members who might appeal against a decision could perhaps have little or no contact with the person on whose behalf they say they are appealing; I note that the hon. Member for Harrogate and Knaresborough made a very honest and personal intervention on that subject yesterday, and I accept that that is a real possibility. As we all know, families are complicated.

There is also a likelihood that allowing more people to appeal against a panel’s decision, both for and against an assisted death, could mean that the commissioner will need considerably more resources. Otherwise. it is very likely that appeals will not be heard within a reasonable period.

Those are genuine arguments, but there are equally strong counterarguments. If the Bill passes, we simply do not know how many coercive or abusive people will seek to drive others towards assisted death. My hon. Friend the Member for Spen Valley spoke about coercion being a criminal offence, but the last figures I have seen show that only 4% of cases result in a conviction. However, it is worth noting that many people with experience in this area are very concerned about the possibility.

We also do not know how many people will opt for an assisted death because their palliative or social care needs are not being met. Again, as I referred to extensively in previous speeches, many people with first-hand experience of this field are extremely concerned about that.

We also do not know how many people will opt for an assisted death partly because they do not want to be a burden on their loved ones. We do not know how many of those loved ones would, in fact, be ready to care for the person who feels like a burden, nor do we know what safeguards, if any, will prove effective against any of those dangers.

One thing we do know is that relatives or carers of someone seeking an assisted death may be able to bring those dangers to light. A family member, a GP or even a paid carer may have seen someone come under coercive control. As new clause 17 stands, they might feel that the panel had made a terrible mistake in ignoring the evidence of that. The hon. Member for Reigate’s amendment (a) to the new clause would give those people the chance to bring their evidence before the commissioner.

I have to say that, as it stands, new clause 17 seems to make some fairly odd assumptions. It would allow an appeal if the applicant’s request for an assisted death were turned down, which means that my hon. Friend the Member for Spen Valley acknowledges that the panels may on occasion get things wrong. But the right of appeal is only one way, which seems extremely odd. It surely cannot be the case that the panels might get things wrong when they turn down a request for assisted dying, but are always right when they accept them.

There surely needs to be an amendment that allows people with knowledge of the situation to appeal if they think the panel has made a mistake in allowing an assisted death. Amendment (a) to new clause 17 would also reduce some of the dangers that we first faced. On that basis, I urge the Committee to support the amendment.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is a pleasure to serve under your chairship, Sir Roger. I will be speaking to new clauses 14 to 17 and 21, new schedules 1 and 2, and amendments 371 to 373, 377, 378, 381, 388, 390 and 391—although I assure you I will not speak for as long as the hon. Member for Reigate did.

Yesterday, my hon. Friend the Member for Spen Valley referred to the Law Society’s neutral position on the new clauses and new schedules. I will not read out all four pages of its most recent submission on the matter, but, although it is neutral, it does continue to have concerns and queries about the new provisions. I will just read out the headlines.

The Law Society remains concerned about the role of the review, whether it would be accessible and workable for people seeking assistance, and the resourcing required. It seeks clarification on the nature of the functions to be exercised by the commissioner and by panels. It still seeks clarity on how panels will deal with cases and asks us to consider where lawyers may need to play a role and the availability of legal aid. We touched on that matter this morning. I accept that the Law Society’s position was used in evidence on the other side of the argument yesterday and that it is neutral, but I could have read all four pages of its response if I had really wanted. That is its position.

I will oppose some of the new clauses and raise concerns about others, including some of the amendments to new clauses tabled by my hon. Friend the Member for Spen Valley. As we have heard, the new clauses and amendments would replace the High Court judge mechanism in the original draft of the Bill with a three-person panel. As we said yesterday, that fundamentally changes the Bill from what the House voted for on Second Reading last November.

The panel will consist of a consultant psychiatrist, social worker and legal member who would chair it. I concur with those who have said that it would help if those individuals were involved earlier in the process. Several concerns have been raised about the High Court judge mechanism in the evidence that we have received. Although I accept that the new panel mechanism would address some of those, it would also leave some untouched and in some cases it could make the position worse.

During oral evidence, we asked witnesses whether and how the High Court judge system would work. Some said that they did not believe that it would. I credit my hon. Friend the Member for Spen Valley for listening to those points, but our problem and predicament now is that we were not able to seek oral evidence on the panel arrangement now before us, and that a large amount of the written evidence had already been submitted beforehand. I will come to this again later, but if we had gone through the normal process of a Government Bill—I accept that this is not a Government Bill—we would not be in this position now.

As a group, the 23 of us are now debating these schedules and clauses before Report, but we have not had any oral evidence on what is before us, and I would argue that we have also had a lack of written evidence. The panel system has complications, and it will be of life-and-death importance. We should have been able to ask witnesses whether a system would work, and how, but we have not been able to do that.

--- Later in debate ---

[Danny Kruger]

Before the hon. Gentleman moves on, I want to reiterate the value of his point. This is an enormous change to the Bill and totally transforms it, but we did not have the opportunity to hear evidence on it. Is he also aware that many of the distinguished people who gave evidence against the traditional stage, which has now been scrapped, have not endorsed the proposal to change it? In fact, some of them are equally opposed to the new proposal. We have not had confirmation that this is the right system, and we did not get the opportunity to hear proper evidence on it.

[Daniel Francis]

Yes, I am aware of some of those submissions from those individuals. I will come to this, but clearly even some people who were in support of making changes did not recommend the ones that we have now incorporated.

First, I would argue that people giving evidence to the panels should be doing so under oath. In my 20 long years as a local councillor, I gave evidence under oath to an investigation by a health and safety executive into the demolition of a building. I would say that the demolition of a building and this matter are very different, and therefore I query why this evidence is not being given under oath.

[Lewis Atkinson]

My hon. Friend is making a thoughtful speech. Has he had the chance to consider the situation with mental health tribunals that I mentioned yesterday, which usually do not take evidence under oath? Clearly, they make very serious decisions regarding sectionings and deprivations of liberty without invoking oath-taking powers.

[Daniel Francis]

I accept what my hon. Friend says, but there are differences of opinion. I accept that that is a very serious matter, but I would argue that a matter of life and death is more serious, and there are processes that we know. As I said, I gave evidence under oath about the demolition of a building and whether someone had followed the correct health and safety regulations, yet we would not be doing so in this case.

[Naz Shah]

My understanding is that, at the mental health tribunal, a person would be entitled to legal representation, which would be an officer of the court or a lawyer, so the bar is very different. Does my hon. Friend agree that actually this is like comparing an apple to a pear?

[Daniel Francis]

Indeed, these are complex matters and these comparisons are made. We have heard a lot about Spain, which I will briefly refer to later, but Spain has a very different legal process from us.

Returning to my comments, currently an individual would not have to give evidence under oath. As I said, the matters discussed by a panel are as important as they can be. In my opinion, people should be giving evidence to the same standards that they do so in a civil or criminal court.

My second concern relates to the procedures for investigating any doubts that the panels may have, and we have heard about that. The panel must hear from at least one doctor and from the applicant under this new set of proposals. They must read the two doctors’ statements and the applicant’s declaration, and then they can decide to ask questions of the applicant and/or one or both of the doctors. The panel can also hear from and ask questions of any other person. How is the panel going to know which people to talk to? Will the panel be asking the right questions of applicants? Applicants will have different circumstances in different cases. Will those professionals also be skilled investigators? I accept the evidence we had on the skills those people have and bring, but it is not clear to me whether they will be acting in a quasi-judicial way. We have heard that it will not be an adversarial system. Although I can see the problems with creating an adversarial system for the panel, there are systems in other countries where that is allowed, and a different appeal system also exists elsewhere.

On the third point, which is about the standard of proof, if the panel finds matters that worries it, but does not find actual evidence of coercion, then it is not clear to me what it does. The panel could find that a patient qualifies for assisted dying on the balance of probabilities, and then approve that request. Three members of the panel could decide that a patient is, on the balance of probabilities, free to make the decision. People have heard my concerns about capacity, and whether the process for determining that is correct. We talked yesterday about how decisions are made in new schedule 2, and particularly subsection 5. There are differing views on the Committee about subsection 5(2), which talks about a “majority vote”, and how that may align with subsection 5(3).

My fourth concern is that there is no provision made in the new schedule or amendments for how the panels will deal with people with learning disabilities. There may be a further amendment to come on that matter. I accept that we agreed to an amendment regarding training for individuals, but I have concerns about how learning disabilities could be judged by the panel. I referred yesterday to how people with learning disabilities could go through this process with no support from friends and family, and then be presented before a panel. Under the Mental Capacity Act 2005 and its code of practice, would the panel have to assist the person in making a decision? That is what, in my mind, the Mental Capacity Act states: that if someone requires help to make that decision, individuals with the power should help them to do so.

There are wide differences in how professionals talk to, listen to and interpret people with learning disabilities. I know that first hand, on a day-to-day basis. The Bill should set out best practice in this field from the start, so that we do not see discrepancies between how panels undertake their work with learning disabilities. I do not think I need to spell out how a bad decision in this field could lead someone choosing assisted death to a place where others may not want to take them.

The fifth area relates to appeals, and that they can only go one way. A person whose application for assisted death is rejected can appeal to the voluntary assisted dying commissioner. The commissioner can then either uphold the decision or allow the person to have an assisted death. We have discussed what happens if a person who knows that that person applying for assisted death has grounds for concern about the case. We have discussed the legal means of people wishing to seek a judicial review, which causes me grave concern. Under the Bill as written, the person known to the person seeking assisted death cannot appeal against a decision. I heard the debate this morning on the amendments tabled by the hon. Member for Reigate. The Bill says that the panel can choose to hear from any person who has a relevant connection, but there appears to be no mechanism for someone to apply to register any concerns with the panel.

In the oral evidence we received we heard concerns from Sir Nicholas Mostyn and Alex Ruck Keene that both sides should have the right of appeal. We heard that from a legal background, from supporters—I hear that Alex Ruck Keene was referred to as an objector, but I think he would say he is neutral in the process. People who have differing views about the process said to us in their oral evidence that both sides should have the right to appeal.

[Naz Shah]

My hon. Friend is making very important points. Is he aware that Professor Mark Elliott, one of the UK’s leading professors of public law and a former chair of the Cambridge law faculty, has spoken about the

“asymmetrical nature of appeals under the Bill,”

and said:

“At best, suggestions that judicial review is an adequate substitute for families who wish to challenge decisions indicate a fundamental misapprehension about the nature of JR.”

On the suggestion that injunctions might work, is my hon. Friend aware that between January 2017 and 2021, the administrative court has issued only one injunction?

[Daniel Francis]

I thank my hon. Friend for that statistic, which I was not aware of. It relates back to concerns that I have had through the process, particularly on learning disabilities and how a family member finds out during the process what processes would be open to them. In my opinion, it is unclear how the proposed panel fits into our legal system. Again, there are all kinds of quasi-judicial panels that do fit into our legal system, and they have an appeal process, of course. They would normally see two parties in a case. I hear what has been said this morning about Spain. It was put to us in oral evidence from a supporter of the Bill that we should look at that part of the Spanish model about having both sides of the process, although I accept that Spain has a very different legal system from the United Kingdom.

[Kim Leadbeater]

I am interested in exploring the characterisation of the two sides referred to, because this is not about two sides. This is about an individual patient with a terminal illness. I am just interested in how we can explore that a little further.

[Daniel Francis]

I hear that. As my hon. Friend knows, yesterday when there was an amendment on individual autonomy, I voted the same way that she did. But I will put the scenarios that I put in that debate yesterday when I came to my decision. The scenario that I have always considered is: what if the person with a learning disability in their 40s or 50s says, “I want to make the decision to relieve the burden on my parent in their 70s or 80s”, and the parent in their 70s or 80s is not involved in the process, but finds out about the process and there is no way they can intervene in the process? I hear what was said about JR, but there is no way, as is laid out in the Bill, that they can then intervene in the process and say, “There has been a mental capacity assessment, but we think that, given there is a borderline level of capacity, there may have been a position where a doctor has had to, under the Act, assist that decision to be made.” What would be the legal process for the parents in that case? These are the scenarios. As Members know, I am not somebody who opposes the principles of the legislation, but these are the scenarios that have brought me to this place.

[Kim Leadbeater]

The quick answer is that there would be an injunction. I hope my hon. Friend will also be reassured that the panel is coming towards the end of this very long process. In the situation he describes, the patient would have gone through all the other stages with the doctor. I imagine in that situation, in a psychiatric referral, the doctor would have said, “Would you consider speaking to your next of kin?” There are a lot of other stages prior to getting to this point, which I hope provides some reassurance.

[Daniel Francis]

I hear that. As my hon. Friend knows, I supported amendment 6, as she did, and other amendments that strengthen the Bill in that way. I accept the right to autonomy. The hon. Member for Harrogate and Knaresborough gave the example of an appeal in Spain, but I do not think the fact that a religious group was funding the appeal in one case is an excuse for taking that right away, because there will be other people in Spain who have genuine concerns and want to go through the appeal process.

[Sarah Olney (Richmond Park) (LD)]

To pick up on what the hon. Member for Spen Valley said, the multidisciplinary panel comes at the very end of the process. She has talked about the different stages, but they all occur in isolation. There is a doctor, then there is another doctor, and then there might be a psychiatric referral. We heard clearly in oral evidence about the value of the multidisciplinary panel referring to each other and taking evidence collectively. The strength of it would be that it occurred at the beginning of the process. I wonder whether the hon. Member will reflect on that.

[Daniel Francis]

I think that is the case. As the hon. Member said yesterday, people from those professional fields—in their written evidence, particularly—asked to be included in the process, but I do not think they were asking to be included at the end of the process; I think they were asking to be included earlier.

[Danny Kruger]

The hon. Gentleman has explained clearly in personal terms why it is important to involve the family, and I concur with the hon. Member for Richmond Park. I want to take the hon. Gentleman back to the rather abstract question of whether there are two sides to these cases. In contradiction to the hon. Member for Spen Valley, I think there are two sides to these cases, as she herself recognises whenever she says that this is a finely balanced judgment. The fact is that a decision can go either way, and it is very important that the decision makers are considering two sides. It is not just the immediate stated wish of the applicant that is the only consideration, as the Bill acknowledges. Does the hon. Gentleman agree that it is important to have the widest possible input into the decision, so that both options—to proceed or not—can be properly considered?

[Daniel Francis]

I hear what the hon. Member says. My concern has always been the scenario that I described. If this legislation is passed and we push it forward, one death that occurs where somebody has concerns about the process would be one too many. I said that clearly when we debated clause 3, and that remains my principal concern. It is not necessarily about two sides, but in cases where there are concerns, we need to do everything we can to ensure that that does not happen.

I have a query about the resourcing of the panel. Part of the reason why we ended up here was the queries about the resourcing of the judicial role in the process. We would need to find skilled professionals, especially consultant psychiatrists and social workers, to sit on the panel. If we look at the per capita rates in the Australian and American states that have assisted dying, we can estimate that the number of cases of assisted dying each year in England and Wales would be in the low thousands. Any consultant psychiatrist or senior social worker who sits on these panels will have to spend hours on each case. We do not yet know how many hours it would be on average, but for complicated cases, it could be many hours. What analysis has been undertaken of the capacity of consultant psychiatrists and senior social workers? Their professional bodies are beginning to look at that, but again, we were not able to ask them that during oral evidence, and because the written evidence was submitted so heavily in advance of these amendments and new clauses being tabled, we do not have that information in front of us.

We hear about the resourcing of our NHS mental health services and the fact that we do not have enough psychiatrists, so I query whether we have enough senior social workers. A senior social worker visits my house every year, but I have never seen the same social worker twice, because of the turnover issues, capacity issues and the lack of staff.

What will the Government do to ensure that the panels fulfil their responsibilities? We would be dealing with applicants who have very little time left, and being able to properly staff the panels must be a priority. We must not take psychiatrists and social workers away from their other work, while ensuring that people seeking an assisted death do not wait a long time. That is another matter on which we would have benefited from oral evidence from expert witnesses. We would also have benefited from the normal consultation that there would have been on a Government Bill, because we would have been looking at that matter for several months.

In summary, I accept that this set of new clauses and amendments is an effort to fix problems with the Bill, but problems remain, and there are probably some new ones as well. I will therefore not support a number of the provisions.

[Jack Abbott (Ipswich) (Lab/Co-op)]

It is a pleasure to serve under your chairship, Sir Roger. I rise to speak to several new clauses and to amendment (e) to new clause 21.

There were many comments yesterday about the fact that a number of Members across the House had cited the judicial stage as an important reason why they supported the Bill. I challenge the notion that they voted for it exclusively for that reason, but I recognise the strength of feeling. To be frank, I was not one of them. I was not persuaded, not least because of a number of points made yesterday by my hon. Friend the Member for Rother Valley, that the judicial stage would be anything other than a rubber-stamping exercise. I am certainly not going to go into “good judge, bad judge”. I hugely respect the legal profession, of which there are many representatives present.

The legal profession has a huge range of expertise and experience, but it could not be expected to cover in depth the psychiatric and social care aspects of the process, about which we have being raising concerns for weeks. For that reason, and especially given that we are retaining legal experience on the panel alongside social workers and psychiatrists—a triple-threat approach, as it were—I fail to see how anyone could reasonably argue that this approach is weaker. In my eyes, it is much stronger.

Of course, some people will always say that it does not go far enough; we have heard that several times. As has been acknowledged, we will never convince everybody that an amendment is safe or good enough. An uncomfortable truth that is rarely recognised but is worth mentioning—I am sure that I will shortly be misrepresented on social media for saying it—is that no safeguard that we could put in any Bill, on any subject, will 100% ensure that there will never be any mistakes.

We have to do our level best to ensure that the probability is reduced to an absolute minimum. However, when someone goes into surgery, there may always be complications that cannot be foreseen, and we know that there have been awful miscarriages of justice; as a new Government, we have spoken about them, from the Post Office scandal to infected blood. We also have to rely on the fact that we are entrusting experienced, trained professionals with carrying out this work. Not only more often than not, but in nearly every situation, bar the awful cases of which we are all aware, they do their work to the best of their ability, and we have to be absolutely honest about that.

We should not look at the new clauses in isolation. They are part of a package. A number of amendments have been agreed to, about coercion and about ensuring that medical professionals are trained to the right standard. Like my hon. Friend, I hope we will see further amendments on special educational needs and learning disabilities. Those things are really important, so it is worth recognising that in addition to the new clauses, which in my view ensure a much stronger approach to the final judgment, we have agreed to a number of other amendments.

I want to pick up the issue of whether the process should be adversarial or inquisitive. I am sure that hon. Friends who have served at the Bar will tell me if I am wrong, but in my view an adversarial process is one of competition: it pits someone trying to prosecute an argument against someone trying to defend it. In contrast, an inquisitive approach is about asserting the truth. In my view, people who are not only going through agonising pain but making agonising decisions about what to do with the remaining days of their life should not be on trial. We should approach them from a position not of suspicion, but of support. Of course, that is caveated by all the things we have talked about, particularly on things like coercion. If there is any idea that a person has been coerced into the decision, of course we should investigate that, but the process should not be adversarial.

The connecting element is that we should ensure that we get the balance right between safeguards and safety. We should not add so many barriers and layers that a person can never access the process because it is too cumbersome. I do not want people to spend the remaining days of their life sitting in endless meetings, consultations and an adversarial court process, or whatever it might be. But we absolutely have to have all the right safeguards: as we have said, if there is any suspicion that someone may have been coerced or does not have mental capacity, of course we should go down the relevant routes to ensure that that is not the case.

Part of the reason why people will make the decision is that they want the autonomy to go out on their own terms, plan their remaining months and enjoy experiences with their family. We must ensure that those precious days are spent with their family, not in endless meeting rooms, so we absolutely have to get the balance right. As has been acknowledged, the diagnosis is a really important part of it. We regularly talk about the six-month point in the diagnosis, but we know when many people receive their diagnosis, their final days will be much shorter, so in the main people do not have time to go through a lengthy, difficult process.

Terminally Ill Adults (End of Life) Bill (Twenty-third sitting)

Daniel Francis Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Kit Malthouse]

The hon. Lady puts it exactly right. These are two separate questions, and we should not conflate them. Certainly, we should not allow the House of Commons to be constrained by those capacity constraints from doing what it thinks is the right thing. We should do the right thing, and then put pressure on the Government to provide the facilities that we think are required.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

On that point, in our oral evidence we were not able to hear from witnesses about the changes to the clauses, because we did not understand what the repercussions would be at this stage.

--- Later in debate ---

[Sarah Sackman]

That might be something that other hon. Members wish to take away with them, whatever the policy intent may have been. In fairness, I do not think that the question of whether there is a requirement to give a positive indication of a decision either way is on the face of the Bill. However, I think that clearly the intention behind paragraph 5(3) of new schedule 2 is that there is unanimity in relation to the grant of an eligibility certificate.

[Daniel Francis]

I was once on a planning committee in which one member of the committee voted in favour and all the other members abstained, so the recommendation went through one to zero. Technically, given the way in which new schedule 2 reads to me, that could happen, because one member could vote in favour and two could abstain, and that would therefore be considered unanimous. Will the Minister comment on that?

[Sarah Sackman]

We are discussing how to construe the provision in paragraph 5 of new schedule 2. I should reiterate that, obviously, it is the promoter’s intent to have—hon. Members may call it what they will—the safeguard of unanimity behind that provision. If there is any feeling that the drafting does not fully reflect that intent, it can be tightened up. However, under of the Bill, there is clearly an intent to have unanimity in respect of the final decision about certification.

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

Daniel Francis Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[The Chair]

Will everyone ensure that all electronic devices are turned off or switched to silent mode? Tea and coffee are not allowed in the Committee Room. We will continue line-by-line consideration of the Bill. I gently ask people to abide by my exhortations yesterday.

Clause 3

Capacity

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I beg to move amendment 322, in clause 3, page 2, line 13, at end insert—

“except that—

(a) for the purposes of an assessment of capacity under this Act, a person must be assumed not to have capacity unless it is established they do have capacity, and

(b) section 1(3) of the Mental Capacity Act 2005 shall not apply.”

This amendment reverses the burden of proof in the Mental Capacity Act, so that those assessing a person’s capacity would not be able to assume that the person has capacity without evidence.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 49, in clause 3, page 2, line 13, at end insert—

“(2) The burden of proof for an assessment of a person’s capacity is the balance of probabilities as required under section 2(4) of that Act.

(3) For the purposes of any such assessment, the principles set out in subsections (2) to (4) of section 1 (The principles) of that Act apply.”

This amendment would set out the burden of proof for capacity assessments as being the same as the Mental Capacity Act 2005 and apply the principles from subsections (2) to (4) of section 1 of the Mental Capacity Act 2005.

Amendment 50, in clause 3, page 2, line 13, at end insert—

“(2) An assessment of a person’s capacity under this Act must include, but is not limited to, an assessment that the person understands—

(a) the options for care and treatment of the terminal illness, including—

(i) the extent of prognostic certainty of their illness or condition, and

(ii) the likely effects on day-to-day functioning, symptom management, and pathway to and experience of death of—

(A) relevant and available care and treatment including palliative care, hospice or other care,

(B) withdrawal or absence of care and treatment, and

(C) requesting assistance in ending their own life under the terms of this Act.

(b) a decision to proceed under this Act does not prevent or make unavailable any care and treatment provision that would normally be provided.

(c) the person’s decision to proceed under this Act must be theirs alone and not bound or directed by the views or decisions of others.

(d) the person is able to change their mind at any stage of the process for requesting assistance to end their own life under the provisions of this Act, regardless of previous decisions.

(e) a decision to proceed under this Act will lead to the provision of a substance that is reasonably expected to end someone’s life following administration and is reasonably expected to be irreversible.

(f) relevant legal consequences from proceeding with a request for assistance to end their own life, including life insurance and categorisation of death certification.”

This amendment would set out certain non-exhaustive requirements for a finding that a person has capacity.

Amendment 398, in clause 3, page 2, line 13, at end insert—

“(2) The following provisions of the Mental Capacity Act 2005 shall not apply to this Act—

(a) sections 1(2) to (4)

(b) sections 2(2) and (4).

(3) Section 2(1) of the Mental Capacity Act 2005 shall apply to this Act as if it read as follows—

‘For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter.’

(4) A person shall be considered not to have the capacity to make a decision to end their own life unless it is proven beyond reasonable doubt that they do have that capacity.”

This amendment disapplies several principles of the Mental Capacity Act: the presumption of capacity, the duty to help someone reach capacity, the irrelevance of an unwise decision, the application of the balance of probabilities, and the diagnostic test. It retains the functional test of capacity and requires that capacity be proven beyond reasonable doubt.

Clause stand part.

[Daniel Francis]

It is a pleasure to serve under your chairmanship, Mr Dowd. I accept that we had a long debate on issues relating to mental capacity in respect of the amendments tabled by the hon. Member for Richmond Park, but we heard in oral evidence significant representations and concerns regarding how the Mental Capacity Act 2005 would work in connection with assisted dying. The purpose of the amendment is to reverse the burden of proof in relation to capacity.

In general—rightly, as I have said previously—a person is assumed to have capacity unless it is shown that they do not. As we have heard, that is a deliberately low bar in order to preserve the basic human right to participate in society and to ensure that normal daily life does not require us all to prove that we have capacity every time we make a decision. The downside of that assumption, however, is that in situations of limited or unreliable evidence, or a very borderline case, the person has to be assumed to have capacity. It is surely clear that that could put many people into real danger if such an approach were taken with assisted dying.

We should not be afraid to say that a person who is terminally ill is potentially vulnerable. Depression and stress are common and understandable responses to a terminal diagnosis and, whether we like it or not, some people in our society will prey on the fragile for their own gain. Our job is to confront the risk of someone being given access to an assisted death not because that is their considered wish, but because no conclusive evidence is available to the doctors at the time of the assessment, or because someone is controlling or coercing that person and able to persuade them in favour of an assisted death that they do not truly want by hiding any signs of their impaired capacity until it is too late.

On previous amendments, I have spoken from my personal perspective. As parents of a child with a learning disability, our greatest concern is what will happen to our child after we have gone. That is the principal thing—the sole thing, I think—that keeps my wife and me up in the night: what will be that determination for our daughter one day? I hope that her twin will remain with her, and that her twin will be the person who makes those decisions for her, but that may of course not be the case. I know that we may have to entrust the state or others to make those determinations for her in due course.

Every parent of a child with a learning disability considers that determination every day. I know that it weighs on their minds not only in connection with this clause; the decisions about their child will also weigh on their minds when we get to clause 4. I am not talking about my daughter’s case, because she does not have enough capacity, but for those people who do have enough capacity—we know from the evidence that the majority of people with a learning disability do have enough capacity—the decisions that may be made for them in due course will weigh on their minds.

In those circumstances, I suggest it is appropriate and reasonable that the assisted dying process maintains the other principles of the Mental Capacity Act, but reverses the presumption in favour of capacity in order to keep people safe. We have heard that doctors are familiar with the Act, including in cases where people sometimes do and sometimes do not have capacity. On that basis, it is not a great leap for them to look for evidence that a person does have capacity, rather than the opposite. That is a normal exercise of their judgment. It is a compassionate and common-sense approach.

I remind Members of what I have said previously about the position of the Law Society: the issue of what capacity should mean, and how to assess it, is central to the Bill. The Law Society considers that the Bill should be clearer in its approach to capacity for the purposes of ending a terminally ill person’s life. Although expert opinion may reasonably differ on whether to use the Mental Capacity Act approach or to introduce a stand-alone definition, the utmost clarity is required if the Bill’s safeguards are to be robust and effective. The Law Society’s recommendation is that before the clause becomes law, a comprehensive consultation should be undertaken to allow relevant experts to share views on the appropriate definition of capacity for the purpose of the Bill.

I will not quote everything again—I have quoted it all previously—but we have heard oral evidence on this matter, including concerns about how the Mental Capacity Act may be interpreted, from Professor House, through Baroness Falkner, Fazilet Hadi, Dr Hussain, Chelsea Roff, Professor Owen and Dr Price, to Dan Scorer of Mencap. My amendment is a compassionate and common-sense approach that would provide reassurance to members of the public. I invite the Committee to support it.

Amendment 398, tabled by the hon. Member for Reigate, goes further than my amendment, and beyond its scope, but I have some sympathy with it. I will repeat some of what I have said previously, in that I remind the Committee of the statutory principles of the Mental Capacity Act:

“A person must be assumed to have capacity unless it is established that he lacks capacity…A person is not to be treated as unable to make a decision unless all practicable steps”—

that remains a grave concern of mine—

“to help him to do so have been taken without success”,

and a person

“is not to be treated as unable to make a decision merely because he makes an unwise decision.”

I remain happy to stand corrected, as I have continued to ask for clarification on this matter, but my point that doctors or other professionals would have to take all practical steps to help them to make a decision related to assisted death has not been challenged. The matter was clearly considered to some degree previously, given that clause 62 of the Mental Capacity Act 2005 states:

“For the avoidance of doubt, it is hereby declared that nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961…(assisting suicide).”

I also challenge whether the Bill’s authors have considered all the scenarios outlined in chapter 3 of the Mental Capacity Act code of practice, entitled “How should people be helped to make their own decisions?”, and particularly those relating to the involvement of family members and carers. Similarly, in chapter 4, “How does the Act define a person’s capacity to make a decision and how should capacity be assessed?”, the code states at paragraph 4.50:

“For certain kinds of complex decisions (for example, making a will), there are specific legal tests…in addition to the two-stage test for capacity.”

Those tests are laid out, but they do not include this scenario.

As I did yesterday, I refer to the Equality and Human Rights Commission paper provided to Members in advance of Second Reading:

“A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity in the context of a decision of this nature and gravity. It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005. Sensitive consideration must be given, in particular, to the interaction between mental capacity, mental health issues, learning disabilities and conditions such as autism. Clause 30 of the bill states that the Secretary of State ‘may’ issue codes of practice…However, it does not oblige them to do so.”

For those reasons, I remain concerned about continuing to use the full definition under the Mental Capacity Act 2005. I therefore commend the amendment to the Committee.

[Dr Simon Opher (Stroud) (Lab)]

I thank my hon. Friend the Member for Bexleyheath and Crayford for his sensitive and well presented amendment. I have a couple of things to say about it.

My hon. Friend says that the Mental Capacity Act is a low bar, but in the Act it is important that when we assess people for mental capacity we look at the gravity and complexity of the situation, and therefore take more consideration of deeper understanding of the issues if the gravity of the decision is very enhanced. There is scope within the Mental Capacity Act to take in these types of assisted dying assessments.

[Daniel Francis]

I hear that. There are different decisions, whether it is buying a coffee or seeking an assisted death. Would my hon. Friend concur that, for some individuals in those scenarios who may be by themselves because of the circumstances of their lives and about whose capacity there may be doubt, the doctor must presume in the first instance that they have capacity, and that the doctor must assist them in making a decision?

[Dr Opher]

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

--- Later in debate ---

[Naz Shah]

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

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

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

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

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

Professor Owen said:

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

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

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

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

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

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

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

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

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

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

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

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

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

[Daniel Francis]

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

[Naz Shah]

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

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

Daniel Francis Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

One of my concerns is that although the Government position in relation to the Bill, as they have said, is neutrality, the Government, in my opinion, have taken a position without an impact assessment, which might suggest that there is some ambiguity. Would the Minister therefore support redrafting potential amendments to include that? If it did specify a doctor or nurse, would the Government then, in their tidying-up, be prepared to accept that amendment?

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

Referring back to Dr Cox, she said:

“We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 78, Q101.]

Does my hon. Friend agree that we need an inequality impact assessment to understand the current position and to get that right, in line with the Bill?

[Naz Shah]

My hon. Friend is absolutely right. Without the impact assessment, how do we know what we are dealing with? That would be a normal way of progressing a Bill and dealing with amendments such as these. It feels as though we have just talked about something when the Government have already had a position on it, or have supported a particular position on an amendment.

To conclude, I will press the amendment to a vote, simply because it is important that we explore every option. We are already specifying what doctors have to do. I maintain again that there are 100,000 people in this country who do not access palliative care as it is. Palliative care is crucial when we are talking about end of life and people who have had a diagnosis of less than six months to live.

We will talk about illness and diagnosis in the next round of amendments, but on this amendment, I do not think that ensuring that somebody has at least explored that option is, as the hon. Member for Solihull West and Shirley repeated at least three or four times, “bogged down”. For me, it is not bogging down when we are talking about providing assisted death. The Bill is the biggest legislation on a conscience vote since 1967 in this House, and I do not care how long it takes. I feel very strongly that if we are to deliver a Bill that my hon. Friend the Member for Spen Valley said has the tightest safeguards in the world, then this debate has to happen. These conversations must happen and be explored not just for us here as parliamentarians, but in order for us to go away and say that we have done the best we can.

Question put, That the amendment be made.

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

Daniel Francis Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

I am sorry, but I am going to give way to the hon. Member for Bexleyheath and Crayford, if he still wishes to intervene, as I am aware that he has been waiting.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I want to bring us back to the points raised by the right hon. Member for North West Hampshire. I may have misread this, but I understand that, under the current law and under the law as it would stand if this legislation were introduced, it would remain an offence to encourage somebody to commit suicide with a 12-month diagnosis—perhaps someone with motor neurone disease or Parkinson’s disease, who may still be a loved one. I do not understand the counter-argument about not using the word “encouraged”: it would remain a criminal offence, unless I am mistaken, to encourage someone to take that decision if they had a diagnosis of longer than six months left to live.

[Rebecca Paul]

That is exactly right. As I have mentioned, I am not bringing in the concept of encouragement; it is already in the law and currently an offence. I am putting forward this logical amendment in order for the Bill to deal with that. If we do not do that, we have not circled the wagons.

--- Later in debate ---

[Naz Shah]

No, I was talking about another hon. Member, not the Minister. We already have laws to protect people from domestic violence, but that does not mean that they necessarily access them.

[Daniel Francis]

From what I understand from the promoter of the Bill, the argument is that we should put these measures in place to protect from coercion people who have less than six months to live, but we would not put those protections in place for people who have nine or 12 months to live. If we are putting the measures in place for someone with six months to live, why are we not doing so for someone with nine or 12 months to live?

[Naz Shah]

My hon. Friend makes a valid point. There has already been a test case, and the Court of Appeal has ruled that undue influence is relevant to medical decisions and that doctors must look at it. If that is already a ruling, I struggle to understand the resistance to adding the words “undue influence” to a Bill that, in the promoter’s own words, should be the safest in the world. A judge has already ruled on it. We already know that we are not going to get to a judge. I struggle to understand this.

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

Daniel Francis Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[The Chair]

Will everyone ensure that all electronic devices are switched off or to silent mode? We now begin line-by-line consideration of the Terminally Ill Adults (End of Life) Bill. The selection list for today’s sitting is available in the room and on the parliamentary website. It shows how the clauses, schedules and selected amendments have been grouped together for debate.

I remind the Committee that a Member who has put their name to the lead amendment in a group is called first or, in the case of a stand part debate, the Member in charge, Kim Leadbeater, will be called to speak first. Other Members are then free to indicate that they wish to speak in the debate by bobbing. At the end of the debate on a group of amendments and new clauses and schedules, I shall call the Member who moved the lead amendment or new clause again. Before they sit down, they will need to indicate whether they wish to withdraw the amendment or the new clause, or to seek a decision. If any Member wishes to press any other amendment—including any of the grouped new clauses and schedules—to a vote, they need to let me know. I shall use my discretion to decide whether to allow a separate stand part debate on individual clauses and schedules following the debate on relevant amendments.

I hope that explanation is helpful. If any Member wishes to make a declaration of interest, they can do so now.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

On a point of order, Ms McVey. Yesterday, members of the Committee received notification that, in the last week, we have received a further 242 pieces of written evidence and 159 pieces of correspondence. Last week, I had read every word of the original 110 pieces of written evidence and 56 pieces of correspondence, as well as studying all the amendments and tabling amendments of my own. As I said, however, more than 400 pieces of evidence and correspondence have been uploaded during the past week, with no deadline by which further such evidence needs to be submitted. Given the large number of evidence submissions every day, Members may well struggle to keep abreast of it and be able to say that they have read every piece of correspondence before the tweaking of the Bill.

I find it difficult to believe that any member of the Committee has been able to read all the evidence submitted since last Tuesday. For instance, the written evidence submitted by the chief executive of my local hospice, which she blind-copied me into on 20 January, was available for members of this Committee to read on 7 February, 17 days after she submitted it. That suggests that, as well as Members struggling to keep up, the Clerks are struggling to keep up. Given the sheer volume of evidence, we will not be able to consider it fully before line-by-line scrutiny.

I therefore seek your advice, Ms McVey, on how we can reasonably expected to begin line-by-line scrutiny when in the last week we have been presented with more than 400 documents, in addition to new amendments.

[The Chair]

I thank the Member for making that point of order. It is normal practice for evidence to come in, and for it to be submitted as it comes in. However, due to the large amount of evidence and its substance, and to the importance of the Bill and this line-by-line scrutiny, I will seek the advice of the Clerk and will come back to him.

--- Later in debate ---

It must therefore be proven that somebody lacks capacity.

[Daniel Francis]

The Mental Capacity Act is written to enable people to carry out day-to-day scenarios, such as buying a coffee or doing their banking, so that they are not challenged in every transaction in their life. It is therefore a very low bar to be deemed to have capacity. Does the hon. Member believe that it was written for this kind of scenario?

[Sarah Olney]

That is an absolutely relevant point. The Mental Capacity Act was not drafted in anticipation of it ever being used for this kind of scenario. Therefore, it is really incumbent upon us to weigh very carefully whether the Mental Capacity Act is the right way of assessing people’s ability to make this decision. As I was saying, it includes the presumption of capacity, and for a decision to end one’s life, an assumption of capacity to make that decision is a low bar, and we have lots of evidence.

--- Later in debate ---

[Dr Shastri-Hurst]

I will make some progress, if I may, because I think I have indulged your patience for far too long, Ms McVey.

I am cautious about introducing this new test. I may not have persuaded everyone, but I have set out my reasons. We risk making the system overcomplicated. We would move away from the well-established mechanism under the Mental Capacity Act and into tiger country, with untried and untested systems that the courts have not considered, which will inevitably lead to challenge. There is no need to do that, because we already have robust mechanisms in place and doing so will merely lead to ambiguity and potential complications.

This is not me reaching this conclusion in isolation. Of course, there will always be voices on different sides of the debate, and we can frame the evidence we have heard to favour one set of arguments over another. However, I am significantly persuaded by the chief medical officer, given his wide experience as not just a clinician but a public policymaker. In his evidence to the Committee on 28 January, he said:

“It is not clear to me what problem people are trying to solve by doing that,”

—he means moving away from the Mental Capacity Act—

“given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q14.]

It is that foundation that we are building on, and it is central to how these things operate in practice.

Although I understand the position of the hon. Member for Richmond Park, and I have a degree of sympathy with those who support the amendments, I invite them to reflect, in the time we have left for this debate, on whether the amendments achieve their stated aim. Do they make the Bill better or do they make it more complicated and convoluted? I say that they make it more convoluted and that, despite the best of intentions, they should not be supported.

[Daniel Francis]

My hon. Friend the Member for Penistone and Stocksbridge knows I am an ally on many of these issues, but I will humbly disagree with her on some matters. I am not a lawyer or a doctor, but like many people here I speak from lived experience. I speak as the parent of a learning-disabled child, so I see the kinds of decisions that have to be made day to day, and the kinds of arguments and conversations that have to be had with people who presume that my child has more or less capacity than she has. Believe me, that is a constant, daily battle for me and my wife.

My daughter has 12 words and a severe sight impairment, which makes it very difficult for her to make some of her decisions, as well as other complexities—predominantly her cerebral palsy, which caused a brain injury at birth. Therefore, in my own way, although I am not a lawyer or a doctor, I have become a bit of an expert on some of the capacity issues that people encounter day by day. This morning, as I do most mornings, I read to her the three choices for her breakfast. I give her a bit of time to think about them and then I repeat them. We get yes or no to those three choices, and that is the choice she makes. Because of her severe sight impairment, when I put those three options in front of her, I have to lift them up in front of my face so that she can see them; if I put them much lower down, she would not be able to see them and make a choice. She would be able to make the choice through pointing if it was within a certain range.

I have doctors calling my wife and me all the time, asking to have a conversation with my daughter, despite their having read the notes saying that she is an 11-year-old with 12 words and a severe sight impairment. I therefore query—I will refer to some of the oral evidence in a moment—how well some aspects of the Mental Capacity Act are currently being carried out. Equally, I deal with people who suggest that she has a greater level of capacity than she does.

I accept—I have had this conversation with the hon. Member for Spen Valley on a number of occasions—that this legislation would not be applicable to my daughter. However, we heard in evidence from Mencap that the vast majority of people with learning disabilities in this country are not in the same position. They are living their day-to-day lives, living in supported accommodation and making the kinds of decision we have discussed in this debate, such as buying coffee and going to the bank.

As a result of my 20 years as a councillor, and in the last 11 years since our children were born, I have become involved with a number of local disability charities, and I know the decisions that people make when their child is at that transition age. They are trying to understand the complexity of taking a power of attorney for a child, as well as other decision-making issues. I spend a lot of time with parents who do not put those measures in place, because they do not understand the complexity in terms of age. We could therefore have a young adult relying on doctors who do not know them and on a judge—I have not seen an amendment on that issue, so I am still talking about a judge—to make a decision about capacity.

[Kim Leadbeater]

I do not particularly have a question to ask my hon. Friend, but I want to pay tribute to him for engaging so positively with the scrutiny of the Bill and for the very personal experience he has shared with the Committee. I reassure him that I will do everything I can to work with him, as I have so far through this process, because his fears are real, and I hear them. We have a job to do through the Bill to solve the problems that exist for people who are dying, but we do not want to create other problems. I am happy to continue to work with him to ensure that we address as much of that as we can through the Committee.

[Daniel Francis]

I thank the Member in charge for her comments. That is the conversation we had when she invited me to join the Committee, and we will continue to have conversations as amendments come forward.

My concern is about some aspects of the Mental Capacity Act, which was not written for these scenarios, and the hon. Member for Richmond Park talked in particular about the statutory principles in it. I am not an expert on these issues, and my hon. Friend the Member for Stroud behind me is more of an expert on some of them. However, there is no obligation in the code of practice under the Act to consult carers involved in a person’s life. The code says:

“if it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.

Therefore, given the way the Act and the code of practice are worded, there is no obligation in the scenarios I am discussing.

There is another issue I was going to raise before I took that intervention. Mencap does considerable hard work. At my local branch, there are many people whose parents are in their 70s and 80s and have cared for their child all their life. I am not being rude, but their child, who is in their 40s or 50s, does feel like a burden to their parents. They know the obligation their parents have to care for them for their whole life. I ask Members to consider what the Mental Capacity Act says: those adults are at a level of capacity to make decisions, but they have been supported in those decisions all their lives and do not—

[Jack Abbott]

We have spoken a lot today about further safeguards and provisions, beyond the Mental Capacity Act. However, I note that my hon. Friend has tabled amendment 339, which states that if a

“person has a learning disability or is autistic”

they

“must be provided with accessible information and given sufficient time to consider it”

and that, additionally, there must be a “supporter” or “advocate” with them. If that amendment was passed, would that satisfy some of my hon. Friend’s concerns about the Act?

[Daniel Francis]

I am hearing that that amendment will need some rewording, but it would address some of my concerns. I am working with Mencap, and further amendments will be tabled to later clauses of the Bill. I understand that one of our colleagues has also tabled amendments, which I welcome. However, I would still have concerns about the interpretation—and there are different interpretations—of the current code of practice when it comes to the involvement of carers and loved ones. Those concerns brought me to the place I came to on Second Reading. I did not seek to be the person standing here; indeed, a year ago, not only did I not believe that I would be a Member of Parliament, but I did not believe that I would be on this side of this argument. It is this particular point that has driven me to this position.

I will talk a little about evidence. The Law Society has a neutral position on the Bill, but it has said that, before the provisions become law, a comprehensive consultation should be undertaken to allow resident experts to share views on the appropriate definition of capacity for the purposes of the Bill. That is the position of the Law Society.

--- Later in debate ---

[Kim Leadbeater]

My hon. Friend cites some interesting observations from the oral evidence, and I welcome his doing so. I draw his attention to my amendments 186 and 198, which look at the training. This is something I feel passionately about. If the Bill were to pass, having gold standard training would be vital, as I said during that sitting. I will do whatever I can to embed that in the Bill, and I will certainly consider what that will look like in the instances that we are discussing.

[Daniel Francis]

I welcome that commitment and look forward to that discussion in due course.

Dr Hussain went on to say:

“Ultimately, I do not think the Mental Capacity Act and safeguarding training are fit for purpose.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.]

Professor Owen said:

“That conveys questionable confidence in the consent processes, of which mental capacity is part, in relation to the decision to end one’s life. It is significant evidence about the confidence that is out there among experienced practitioners.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 228, Q290.]

Dr Price said:

“I…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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 268, Q349.]

[Danny Kruger]

I note the point about training, and of course we would all welcome the strongest possible training. As the hon. Gentleman implies, nobody has yet used the Mental Capacity Act to assess somebody for an assisted death; it would be completely uncharted territory for the whole system, including anybody providing training. How does he imagine that training might be designed to allow for the Mental Capacity Act to be applied in this case, when it would be completely novel?

[Daniel Francis]

As I say, I am not an expert on this matter from a legal or medical background, but those are the concerns that have driven me to the place that I am in.

Dan Scorer, from Mencap—as my hon. Friend the Member for Spen Valley knows, I was adamant that Mencap would give evidence to us—said:

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 269, Q350.]

He clearly cited what many people know occurred during covid, with “do not resuscitate” orders and decisions being made on people’s behalf. That is what has driven me to this place, and that is why I will support the amendment. I also have further amendments on this issue later on down the line.

I completely understand what my hon. Friend the Member for Spen Valley said about training in relation to these decisions and scenarios. At the end of life, people should have autonomy and choice, but if that comes at the price of one person, in a borderline capacity decision that is made on their behalf, it will be one death too many.

[Danny Kruger]

It is a great pleasure to follow the hon. Member for Bexleyheath and Crayford, and I pay tribute to his powerful speech. I wish more people on our side of the debate and on the Committee had medical backgrounds, but I am glad that we have someone who has such direct personal experience of supporting people with learning disabilities. I am grateful to the hon. Gentleman for everything he said and I entirely agree with it.

I want to speak in support of new clause 1, tabled by the hon. Member for Richmond Park, to replace the use of the Mental Capacity Act with a new ability test. This goes to the heart of the Bill: it is absolutely crucial. Clause 3, which her new clause would replace, is in a sense the essence of the Bill. It is the shortest clause, but perhaps the most important one, because it determines the means by which somebody will be assessed to be capable of making this decision. It is a very important protection—and, at its simplest, this is a very confusing and complicated area. I will no doubt confuse myself in the course of my speech, but I have a simple observation to make, which the hon. Lady also made very well. We are dealing with the issue of impaired judgment; currently, under the Mental Capacity Act, it will be possible, through the terms of this Bill, for somebody whose judgment is impaired by virtue of a mental disability or mental illness to successfully apply for an assisted death. I do not think that is what the public want and I do not think it is what the House of Commons voted for. I think it is a misunderstanding of the principle of the Bill, which did win support on Second Reading.

The simple fact is that somebody’s judgment can be impaired under the Mental Capacity Act, but they could still have capacity. We have repeatedly heard points made about how the Mental Capacity Act applies in the normal conduct of life for disabled people—for people with mental disabilities. For instance, people can be anorexic, depressed or suicidal, and of course they can still consent to all sorts of decisions that affect their life, including medical treatments. A person can consent to have surgery on a broken leg while depressed; there is no difficulty whatever with that and of course that is appropriate. That is rightly the basis on which we currently judge capacity.

New clause 1 would build on the terms of the Mental Capacity Act. It would add to the principles of autonomy and of people being able to understand, use and weigh the relevant information. As I said in an intervention, the key point is that using this new test of ability would ensure that the person was fully able to do those things—fully able to understand, use and weigh the relevant information. In the case of impaired ability, they would not be considered to pass the test.

We hear a lot that this is the toughest Bill in the world, with the highest safeguards. It is worth pointing out that in Oregon, which this Bill is largely inspired by, there is an impaired judgment test. There is a capacity test similar to that in the Mental Capacity Act, but people are also required to demonstrate that there is no impaired judgment, and that is exactly what the hon. Lady is seeking to achieve. Her new clause would build on the terms of the Mental Capacity Act with these key principles about understanding information, but would ensure that it was a full understanding, with no impairment. It would strengthen the Bill without complicating it. In fact, it would significantly simplify it, because at the moment—this is the substantial issue with the application of the Mental Capacity Act—a huge complication is involved when we go into the forest of the MCA and try to apply it in these terms. When we try to navigate our way through the MCA in pursuit of an assisted dying application, there is a whole series of complications.

I will cite some of the evidence that we received. The Royal College of Psychiatrists, which we heard from, stated in its written evidence:

“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill.”

We also had evidence from King’s College London’s Complex Life and Death Decisions group, which is a group of world-leading professionals working on issues relating to the end of life. They say that use of the MCA for assisted suicide would be “an entirely novel test”. I note that the hon. Member for Penistone and Stocksbridge—and I think my hon. Friend the Member for Solihull West and Shirley—made the point that an “ability” test would be a novel term. I acknowledge that the term “ability” is not currently set out or recognised in law in the same way that capacity is, but as I said, it is clearly defined in new clause 1, as tabled by the hon. Member for Richmond Park. Of course it is going to be novel—we are talking about something that is entirely novel. Assisted suicide is a new measure that is being introduced, so of course we have to have a new measure by which we define who is appropriate.

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

Daniel Francis Excerpts

Tuesday 11th February 2025 Public Bill Committees

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Sir Roger. As was noted earlier, the Government remain neutral. My role here is not to offer a Government view on the merits of the amendments but to provide a factual explanation of their technical and practical effect, to assist the Committee in its scrutiny. This group of amendments focuses on the concept of mental capacity. As drafted, the Bill, in clause 3, states that

“references to a person having capacity are to be read in accordance with the Mental Capacity Act 2005”,

with sections 1 to 3 of that Act establishing the principles and criteria for assessing a person’s capacity to make decisions. New clause 1, which would replace clause 3, and amendments 34 to 47, would collectively introduce the concept of an individual having the ability to make the decision to request assistance to end their life. A person’s ability would be determined by whether they could

“fully understand, use and weigh the relevant information in accordance with regulations made by the Secretary of State”.

That is intended to replace the term “capacity”, used in the Mental Capacity Act 2005, which provides a very specific definition of what it means to lack capacity in relation to a particular decision. A lack of capacity under this framework means that a person must be unable to understand, use and weigh information relevant to the decision, and that that must be directly caused by

“an impairment of, or a disturbance in the functioning of, the mind or brain.”

The “ability” proposal, as drafted, deals only with the use and weight of information.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

To go back to the point I made this morning—I am happy to stand corrected, but nobody has disputed it—two issues continue to concern me in relation to the Mental Capacity Act and the code of conduct. The first is that the doctor would have a choice, under chapter 5 of the guidance, as to whether it is practical and appropriate to consult other people—with regard to learning disability, for instance.

Also, we have not discussed principle 2 in chapter 2, which says that the doctor has to do everything practicable to try to help the person to make the decision for themselves, before concluding that they do not have the capacity to do so. The principal concern for some Members remains those issues in relation to the Mental Capacity Act, which have not been considered for this scenario. I would like the Minister to address them and the fact that that Act, which was written 20 years ago, was not written for this scenario.

[Stephen Kinnock]

The fundamental position of the Government is that the Mental Capacity Act as it stands is a known quantity. It provides the legal base for a whole range of measures and interventions, and the Government’s view is that it would be an adequate legal base to operationalise the Bill should it receive Royal Assent. Our position on it goes no further than that; it is simply a matter of fact that there is a piece of legislation that is a known quantity.

--- Later in debate ---

[Kim Leadbeater]

I do. I take my hon. Friend’s comments on board and I will come to address them. As other colleagues have established, it would seem nonsensical to try to introduce a brand new legislative framework rather than use an existing piece of legislation that has stood the test of time. Indeed, Professor Laura Hoyano, emeritus professor of law at the University of Oxford, who has worked in civil liberties, human rights and domestic abuse, said:

“It is interesting that a number of Members of Parliament who are practising physicians pointed out in the debate that they have to evaluate freedom of decision making and absence of coercion in many different medical contexts.”

She talked about the withdrawal of medical treatment, as others have this afternoon, and went on:

“It is considered to be a fundamental human right that lies at the heart of medical law that a patient has personal autonomy to decide what to do with their body and whether or not to accept medical treatment, provided that they have the capacity to do so...Doctors have to make those assessments all the time.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 227, Q289.]

In the light of that evidence, it would seem unnecessary to create a whole new legal framework around the new concept of ability.

However, although I think the Mental Capacity Act is the correct legal framework to use, I strongly agree with palliative care doctor Rachel Clarke when it comes to additional training on assessing capacity for the purposes of this Bill, which relates to the point made by my hon. Friend the Member for Banbury. She strongly encouraged us to give serious consideration to this matter, saying:

“If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training from day one of medical school onwards.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]

The CMO also suggested that training on capacity, as has been discussed, may require some slight adjustment. He said:

“There is an absolute expectation within the Act, for example, that the more serious the decision, the greater the level of capacity that someone needs to have...That training should be generic, but may need some adaption.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30-31, Q3.]

I agree. As I have said, I think one of the best things about the Bill is the opportunity it gives us to develop gold-standard training around end-of-life care, end-of-life conversations and choice for terminally ill people. That should include training in assessing capacity specifically for the purposes of the Bill, for a decision that is clearly of such a high level of consequence and seriousness.

[Daniel Francis]

I absolutely accept what my hon. Friend says about training. I know we have separately discussed places in the Bill where we could replace the word “may” for “must” to make the safeguards stronger. However, I come back to the same points as I made to the Minister. The Mental Capacity Act code of practice, which I presume is what we will be relying on, says:

“If it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.

However, it does not say “must”, and for adults with learning disabilities particularly, that remains a principal concern. Chapter 2 of the code of practice says:

“It is important to do everything practical...to help a person make a decision for themselves before concluding that they lack capacity to do so.”

I know this is not my hon. Friend’s intention, but that is the wording that would lead a doctor to have to help somebody make this decision. My question is: how will we overcome that issue?

[Kim Leadbeater]

That is a point worth making, and something we will look at through the amendments that my hon. Friend has proposed. I am very happy to look at those, as I have already said, but the idea of creating a whole new concept of ability seems wholly unnecessary in the context of a piece of legislation that has stood the test of time for over 20 years.

I come back to training. Although the full details of the training programme that would accompany the Bill cannot be put on the face of the Bill, I have discussed the issue at length with officials in the Department of Health and I have included amendments to that effect. Amendments 186 and 198 specifically state that training must include assessing capacity and assessing whether a person has been coerced or pressured by any other person. Further comprehensive training will be included in regulations set out by the Secretary of State, and the chief medical officer is confident that that is the correct way to proceed.

Furthermore, as has been referred to, there are multiple opportunities within the process to assess capacity by a range of professionals. I have also tabled new clause 8, which would create a duty for the Secretary of State to consult before making regulations relating to training. Within that, there would be a duty to consult not only the Equality and Human Rights Commission, which is important, but persons with expertise in matters relating to whether persons have capacity and whether persons have been coerced.

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

Daniel Francis Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

Colleagues, before we continue, let me say that we have 13 questions and less than 30 minutes, so the question and the answer need to be no more than two minutes.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

Q I want to ask about capacity. Chloe, I think you said patients are sometimes given the drug some time before they die, so I want to understand where capacity assessments are taken and at what stage during the process.

Dr Furst: Capacity assessments are taken every time a doctor sees the patient. In my state, that would be at first assessment—first request—then a consulting doctor would come and do another hour-long assessment of the patient and assesses capacity at that stage, and then I would come back as the co-ordinating doctor for a second or third assessment of the patient, and assess capacity. They would then be given their drug, if it is self-administered. We assume and hope that they retain capacity, and we strongly advise patients and families that, should they lose capacity, they will have voided their permit and they cannot take the drug, but there is less oversight of that. However, we know that the majority—over 80%—of these patients are connected with palliative care, so we often have community teams going in and seeing them, and we are still touching base with them, maybe more peripherally, and checking capacity as we are having conversations or as we are coming and doing home visits from a palliative care perspective. If it were deemed that the patient is quite delirious, the permit would be voided and we would remove the substance from the house. If it is practitioner administration, we are also, obviously, testing capacity right at the moment that we are administering the substance.

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

Q I will direct this question initially to Mr Greenwich. The issue of coercion has been a significant concern to many in the debate. In line with the New South Wales legislation, the Bill as proposed does not provide a definition of coercion, either explicitly or by reference to other legislation. Have you found that to pose a difficulty in your jurisdiction?

Alex Greenwich: In New South Wales, our legislation deals with and goes through coercion in quite some detail, with pathways to assess it. It deals specifically, for example, with a situation in which someone is under coercion from a person who is a beneficiary of their will; obviously, the person seeking voluntary assisted dying then becomes ineligible. In the space of coercion, that is a key part of the training for a doctor who will be a consulting or co-ordinating practitioner. We have made it a criminal offence in New South Wales, and indeed our board will report on it and on whether eligibility for access to voluntary assisted dying has been denied to someone. Our most recent report indicates that it has.

The overwhelming experience is that having voluntary assisted dying in place is itself a safeguard from coercion for people with a terminal illness. If someone wants to end their life quickly, voluntary assisted dying through a regulated process is not the option that they are going to take. Someone engaging in voluntary assisted dying will be assessed against coercion and against decision-making capacity, and will have to make sure it is an enduring decision.

When we talk about coercion, and the concern that people may currently have in the UK about people with a terminal illness feeling in any way coerced, the experience in New South Wales and elsewhere in Australia is that voluntary assisted dying has provided a safeguard in that regard. Our legislation, the training and the reporting is very clear on that.

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

Daniel Francis Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Jack Abbott (Ipswich) (Lab/Co-op)]

Q286 Professor Owen, you have talked extensively about the complexity of the Bill. I think it fair to say that our previous witnesses this week believe that the simplest safeguards are the safest. I stress that the simplest does not necessarily mean the weakest; it means a straightforward plan. Do you agree with the points that the chief medical officer and others have made about simplicity? Where do you stand on that, and on the broader point about complexity?

Professor Owen: I am somewhat reminded of the old adage that for every complex problem there is a simple solution that is false. We are dealing with complexity here—I think we have to accept that—but complex law or poor law will not provide good safeguards. If you step back and think about what the Bill is really about, at its simplest, it is about the decisional right to end one’s own life in terminal illness.

Associated with that is the concept of mental capacity. I have had over 20 years of research interest in mental capacity. When I look at the issues relating to mental capacity with the Bill, they are complex, but the other important point to understand is that they are very novel. We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

Q To elaborate on that point, Professor Owen, the Mental Capacity Act 2005 sets out the principles that a person must be assumed to have capacity, that a person cannot be treated as lacking capacity unless all practicable steps have been taken to support them and that a person cannot be treated as lacking capacity merely because their decision is unwise. Is it those issues that are causing you concern about capacity, or is it something else?

Professor Owen: It is a bit more fundamental than that, actually. If you look at how mental capacity features in the Bill, the test or the concept that clause 1 rightly invites us to consider—rightly, I think—is the capacity to decide to end one’s own life. The Mental Capacity Act comes in at clause 3.

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. I can talk about the Mental Capacity Act in detail if you like, but that is the main point that I want to make.

[Daniel Francis]

The Chair may cut you off, but I am happy for you to continue if she allows it.

[The Chair]

It is one question, one answer. I call Danny Kruger.

--- Later in debate ---

[Juliet Campbell (Broxtowe) (Lab)]

Q My question is to Professor Preston. I will go back to something you said in your last answer, when we talked about how people are treated, and the differences and inequalities across society but also within our healthcare systems and how things are done. This was highlighted specifically during the pandemic. How do you think these inequalities will undermine the principles of the Bill?

Professor Preston: I think it is about having that additional consideration. When additional consideration for, perhaps, social deprivation or about people from minority groups is in the training and is at the forefront of people’s thinking, they can address it.

I will give you an example. We did a study looking at access to palliative care. I know you have heard a lot about there being a postcode lottery and things like that. One of our areas is one of the most deprived coastal communities in the country, and yet it had equal access for people across all areas of society, because they brought in people to target anyone from those socially deprived areas.

Equally, at the beginning of the first wave of the pandemic, at one of the big London hospitals, we analysed the data because we were concerned about access to palliative care services. Were people accessing it during the pandemic? We also looked by ethnicity. What we found was that not only during the pandemic, but pre-pandemic, if you were non-white, it took—I don’t know—three or five days longer to get that referral.

We had an idea that from some of the research we had done on social deprivation, people are making assumptions. It is not about people making horrible decisions, but they are making assumptions: “Oh, they will have a big family—the family will look after them. This will happen or that will happen.”

The nurse consultant, Claude Chidiac, went in and did training for the staff and said, “Don’t assume that just because people come from an Afro-Caribbean family that they have got this big family.” Within a year, when the second wave happened, the difference had gone. It can be at the forefront of training and you can make people really think about it. I would say—I think someone said it yesterday—that there is almost an inverse inequality, because I think those families and those communities will be really trying to protect people from even thinking about going for it.

[Daniel Francis]

Q My question is to Claire Williams and follows on from Dr Opher’s question. Clause 18(9) says that once the person has self-administered the approved substance, the doctor must stay with them until they have died, or until it has been determined by the co-ordinating doctor that the procedure has failed. We know from overseas that, in a very small number of cases, the procedure may take three or four days, so clearly the doctor cannot stay with them the whole time. Subsection (10) says that the doctor need not be in the same room as the person to whom the assistance is provided. I want to understand how that could be strengthened in terms of safeguarding. The clause says that the doctor must stay with them but, first, it is clearly not practical for the doctor to stay with them for a number of days, and, secondly, it goes on to say that the doctor need not be in the same room.

Claire Williams: Again, I can only apologise, as my evidence is about a committee-based, panel approach to decision making rather than what happens at that point of end of life. I do not know whether somebody else is able to come in.

Professor Preston: I can take that if you want.

[Daniel Francis]

Thank you, Professor Preston. Sorry—if you agree, Mrs Harris.

[The Chair]

I wondered who was chairing for a moment.

Professor Preston: We raised that concern about doctors staying with people for prolonged periods of time. I think it will come down to what “self-administered” means. In our written evidence, we said that, in Switzerland, that has increasingly meant setting up an intravenous drip and the patient opens the port. In that case, you are talking about different drugs and it would be much speedier. But we have data on oral ingestion from Oregon, and I think 30% of cases took an hour to die. Most of us know that in the NHS, an hour with a doctor will be pretty unlikely, even if they are in another room. Most assisted deaths across the world occur in a home or a nursing home, so you do not have doctors there—we are not talking about GPs being out for prolonged periods of time. The method of administration may change that as well.

The other thing is that doctors are not used to being with patients at the end of life—it is nurses and healthcare assistants. So you are actually bringing in a new role for them to be with someone as they die. I am not saying that they have not had that experience, but they are not the traditional healthcare workers who are at the bedside. Again, that would need to be accounted for in the training so that they are more used to being around people who are at the end of life. They will have had some experience, but it is very much in the realm of healthcare assistants and nurses.

--- Later in debate ---

[Dr Opher]

Q Conveniently, my question follows on from that. On our first day of evidence, we had Chris Whitty, the chief medical officer, saying that when you are assessing capacity, the vast majority either clearly have capacity or clearly do not, and there is a small section in the middle. Michael, would you say that a role of a GP would be to inform those definite yeses and definite noes, and then they would perhaps not have the skills for the intermediate ones? I am just suggesting that.

Dr Mulholland: As GPs, we can assess capacity. In this situation, the college’s position would be that we feel the GP should not be part of the assisted dying service, so we would see a standalone service that we can signpost our patients to. The GP role may go on to a different route afterwards, and it may be part of other things with palliative care and looking after the families. We think that some GPs may want to be involved and take that step, but we know from our membership surveys that we have had at least 40% of members in the past who would absolutely not want to have any part in that.

Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient. We could discuss that these things exist, but we would not be doing that capacity assessment. Obviously, to give patients information about what they are going to, as you know, we would assess their capacity to take that information in, retain it and do the right thing with it for them. We would be doing that level of capacity assessment, but not further on in the process, where you are assessing whether a patient is able to make a final decision. I think Chris Whitty referred to the various levels of capacity. As the decision gets more difficult and complex, you want a greater understanding with the patient that they really know the implications of what is going on, and we just would not be doing that in general practice.

[Daniel Francis]

Q My question is to Dan Scorer. In the Mental Capacity Act 2005, the definition of “capacity” means that many people with a learning disability are presumed to have capacity. We have heard comments from others on the panel, and I am trying to understand whether you feel that the existing provisions in that Act would cover those with a learning disability or whether you would need that greater advocacy, as you discussed, or something different from the Act. Do you have any comments on the fact that family members—lifelong carers, in many cases—would have no requirement, under the Bill or the Act, to be involved in the decision or to comment on their family member’s capacity?

Dan Scorer: The Mental Capacity Act starts from the principle of presuming capacity. The question would be whether, when someone who is terminally ill puts themselves forward for assisted dying, doubts start to emerge about whether they actually have the ability to make that decision in terms of whether they can understand, retain or weigh the information and communicate their intentions.

As I mentioned earlier, our concern is how those discussions around assisted dying are initiated. For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures. Having a doctor come to you and say, “What do you think about assisted dying—is that something you might want to consider?” could move them towards or into potentially accepting a course of action that they had never considered before.

That is why I was saying that it is about having advocacy support around that discussion and, as you were saying, about the role of families. Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate—that would probably be our preference—who is specifically trained to support people with a learning disability who are considering their end-of-life options.

There is a lot that could be done in addition to what is in the Bill already to potentially much better support people who are considering end-of-life options and to have other professionals who could input into multidisciplinary discussions, potentially around capacity assessment.

--- Later in debate ---

[The Chair]

May I thank the panel for giving evidence today? We really appreciate your attendance.

[Daniel Francis]

On a point of order, Mrs Harris. Yesterday, we heard evidence about the impact of the Bill on different groups with protected characteristics, including age, disability, race and sexual orientation. We heard from the EHRC, an arm’s length body of the Government, that it strongly recommends that a full impact assessment, a human rights assessment and a delegated powers memorandum be undertaken before the Committee begins line-by-line scrutiny.

We have also heard from witnesses about the impact that the Bill will have on disabled people, from Disability Rights UK and others, on black and minority ethnic people, from Dr Jamilla Hussain, from LGBT people, from Baroness Falkner, and on those from a low-income background, from Sam Royston of Marie Curie. We heard from Dr Sarah Cox and Dr Jamilla Hussain that evidence from their work shows that this Bill has a higher probability of pushing minority groups further away from seeking healthcare, while inequality pre-exists. As observed through the pandemic and from available data, minority groups do not always trust that their interests will be best represented in institutions that would enable the facilitation of someone’s death, should this Bill become law.

I therefore believe that on the basis of that advice, so as not to inadvertently widen health inequalities through Bill, it is essential to have health impact assessments. I appreciate that an equality impact assessment will be produced for Report stage, it will not be available for detailed line-by-line scrutiny. When we agreed the timetable for line-by-line scrutiny last Tuesday, we were not aware that this assessment would be produced, given it was first reported to the House during the money resolution last Wednesday. There is a risk that there will be a bigger impact on people with protected characteristics, and this will not be understood fully until the Government have produced the equality impact assessment. As things stand, that means that we will move into line-by-line scrutiny of the Bill on 11 February without a full understanding from the assessment of the impact of the Bill.

I am therefore minded to request a short Adjournment of the Committee so that, as advised, we can receive the assessments before we progress to line-by-line scrutiny. Please will you advise me, Mrs Harris, how I could secure such a motion to adjourn the Committee until we are in receipt of the evidence, as advised by the witnesses yesterday?

[Sarah Sackman]

Further to that point of order, Mrs Harris. I want to clarify the Government’s position. As the Committee knows, the Government are neutral on the Bill, but once the Committee has concluded its work and prior to Report, we are committed to publishing the ECHR memorandum, a delegated powers memorandum, the economic impact assessment that was committed to during the money resolution debate, and an assessment of the equalities impact of the Bill. In terms of the timing, it is necessary that the impacts that are assessed be of the Bill as it is brought forward. If the Bill is liable to change via amendments proposed by members of this Committee, it is important that we know what it is that we are assessing the impact of. That is why the proposed timing is to publish the impact assessment at that stage. The point is that before Members of the House come to a vote on Report and Third Reading, they will all have before them the impact assessment in respect of equalities and all those other aspects of the Bill.