Dan Scorer, Professor Lewis, Dr Mulholland and Dr Price gave evidence.

We will now hear oral evidence from Professor Emyr Lewis, emeritus professor at the department of law and criminology at Aberystwyth University; Dr Michael Mulholland, honorary secretary at the Royal College of General Practitioners; Dr Annabel Price, from the Royal College of Psychiatrists; and Dan Scorer, head of policy, public affairs, information and advice at Mencap. Could you please introduce yourselves, so that we know who you are before you start giving evidence?

Dan Scorer:

Hi. I am Dan Scorer from Mencap, the learning disability charity. We work across England, Wales and Northern Ireland. We support 4,000 people with a learning disability with their care and support needs, as well as providing information and advice services across the three countries. We also campaign for better support for people with a learning disability, and their families, across health, social care, employment, social security and cost of living.

Dr Mulholland:

Hi. I am Michael Mulholland. I am a GP in Buckinghamshire and the honorary secretary of the Royal College of General Practitioners, the professional membership body for general practitioners. We have 54,000 members across the UK.

Our current position as a college is that we oppose a change in the law regarding terminally ill adults; that was ratified by our council in 2020 when we last had a survey of the membership. Seeing that there were changes in the legislative landscape across the UK in 2023, our council asked for a group to be convened to look at where our college should be going. We created a committee that looked at that and created a list of principles, which I will be referring to in any evidence I give today. In our council, we are currently undergoing a review of what our position should be. We have a membership survey that is live at present, and we will be bringing that to our council in March this year to decide the college’s position.

Professor Lewis:

Hello, I am Emyr Lewis. I am a lawyer from Aberystwyth University, and I am here to talk about the legal and constitutional aspects relating to Wales that arise from the Bill.

Dr Price:

Good afternoon. My name is Dr Annabel Price. I am here representing the Royal College of Psychiatrists, a professional medical body responsible for supporting psychiatrists through their careers, from training through to retirement, and I represent 21,000 members.

I am an old-age liaison psychiatrist, working in a general hospital setting. I also provide psychiatry input to my local hospice, and I teach palliative care at the University of Cambridge. I have a research background in mental health at the end of life, and particularly mental capacity for terminally ill adults requesting assisted dying.

Thank you. Liz Saville Roberts, Danny Kruger has kindly forfeited a question in order for you to have two, so I will call you first.

Q Thank you very much to Mr Kruger, and to you, Chair.

Professor Lewis, I am glad to say that the Committee appreciates that scrutiny is necessary for Wales-related aspects of this private Member’s Bill. What are the risks of insufficient scrutiny?

Professor Lewis:

Because this is a private Member’s Bill, it will not have gone through the process, which a Government Bill would have done, of having discussion between Governments as to how this might be sorted out. That impacts on Wales. So it is really important to have a session that focuses, albeit briefly, on Wales. I am grateful to the Committee.

This is an England and Wales Bill because certain criminal offences are matters on which the Senedd in Cardiff cannot legislate, and that includes offences that relate to suicide. However, apart from that, the impact of the Bill on devolved matters, if it became law, would be substantial—on the health service in Wales, on social services in Wales and on Welsh society generally. It is important that you take account of that. Indeed, certain aspects of the Bill seem to me to require a legislative consent motion to respect the Sewel convention.

Q Could you expand somewhat on which aspects those are?

Professor Lewis:

As I am sure you are aware, the Parliament here in London can legislate about anything at all—absolutely anything. However, where the power to legislate is given to the devolved legislatures, the Sewel convention states—in the Government of Wales Act, in section 176, I think—that the Parliament in London will

“not normally legislate with regard to devolved matters”.

That is what is said. Therefore, there are certain aspects of this Bill—I will give you brief detail on that—that, in my opinion, relate to devolved matters. The first is clause 32. This is a very broad clause that would give the Secretary of State very broad powers for the implementation of the Bill within the NHS, including within the NHS in Wales. It seems to me unarguable that that is a matter both on which the Welsh Government ought to be consulted and which would require legislative consent from the Senedd.

The second is a cluster of clauses that impose specific functions on Welsh Ministers and on the chief medical officer for Wales. They are clauses 31, 33 and 34. Once more, from a formal perspective, they seem to require a legislative consent motion, so it seems to me that some thought needs to be given as to how that might happen in the context of a private Member’s Bill.

Q To follow up on what you just said about legislative consent, in October of last year, the Senedd voted against Julie Morgan’s assisted dying motion. In your opinion, what implications does that have for the Bill and its progress?

Professor Lewis:

A motion was put forward by Julie Morgan that was supported by three or four Members of the Senedd, which was broadly in support not of this specific Bill, but of the purpose of this Bill, and it was defeated, as you say, after a full debate on the Floor of the Senedd. Formally, legally and constitutionally, that is of no consequence, because it was not a legislative consent motion, and of course, as I said earlier, this Parliament is able to do what it likes. It could totally disregard that. Whether that would be a prudent or an appropriate thing to do, or even what one might describe as a constitutionally appropriate thing to do, is another matter.

I think it reinforces the point that there is a significance in making sure that scrutiny of the Bill has a Welsh focus. You might consider, for example, making different provision in Wales. How do you respect what was a democratic vote in the Senedd in Cardiff? Well, you might consider having different commencement provisions—I am not advocating this, it is just an example of what you might do. Commencement of the Bill in Wales might happen in a different way, on the assumption it was passed. You might put that in the hands of Welsh Ministers and the Senedd, just as an example.

Q To be clear, I am here as a Government Minister on this Committee, and the Government are entirely neutral on the Bill, so we do not take a position on the substance of the issues you have raised. Clearly, the draft Bill is intended to apply in both England and Wales, as you say, and your note is extremely helpful in highlighting some of those issues that will need to be worked out. As a Government, we will work closely with the Welsh Government to assess the legalities and practicalities of any potential changes to the law.

You have highlighted in particular the distinctions between health law, which is a devolved matter, and the law on suicide, which currently is not devolved. On the first page of your written evidence, you draw out clauses 32, 31, 33 and 34 in particular as issues that we should focus on in ironing out those legalities. Is there anything else you want to add to that that you think that we as a Government should focus on in our work consulting with the Senedd?

Professor Lewis:

I think it is important that both Governments understand how the implementation of what will be a pretty radical change in the law will happen on the ground within the health service and among those who are responsible for delivering social services. I am thinking of issues such as adult safeguarding, which in Wales has its own specific law and is slightly different from the arrangements in England. There are those kinds of nuances between the two territories, and I think it would be prudent to focus on them.

I also think it is wise to bear in mind that Wales has certain statutory bodies whose interests might extend to the Bill. For example, there is the Older People’s Commissioner for Wales, in particular; there is the Future Generations Commissioner for Wales as well. I think it is important that there is some forum, some scope, for those people also to be involved in how this is shaped.

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

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

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

Dr Price:

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

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

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

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

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

Dan Scorer:

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

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

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

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

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

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

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

Dr Mulholland:

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

The evidence is from the Royal College of Psychiatrists, but anybody can answer the question.

Dr Mulholland:

As GPs, we feel that we need a stand-alone service to take people through this process for assisted dying. We do not feel that the GP is in a place to make an assessment of capacity for this process. That is beyond anything that any of us have ever trained in or understood, and it will need people who are trained in assessing capacity at that point. As GPs, we are very used to assessing whether somebody has the capacity to take a course of antibiotics or to be referred for something that we understand, but this is an issue that will require a much deeper level—the Royal College of Psychiatrists has probably thought more on that level about the next steps.

Dr Price:

Yes; to refer back to the written evidence, if we think about people with palliative care needs towards the end of life—so the people who would qualify under this Bill—around 20% will have diagnosable depression, around 10% will have a wish to hasten death, and around 4% will have a more persistent wish to hasten death. Those wishes may not be expressed unless they are assessed for. One of the things that I would do in my clinical practice would be to look for treatable mental disorder in people who express a wish to hasten death.

I do not do that alone. You asked about a panel. When I am thinking about the needs of people who are nearing the end of life, and I work with people nearing the end of life most weeks of my working life, I work in a multidisciplinary team. My own small team comprises doctors, nurses and occupational therapists, but I work closely with social workers, the safeguarding lead, chaplains and all my medical and surgical colleagues to make good decisions about my patients in a biological, psychological and social way. Not all difficulties that are psychological can be fixed with a psychiatric intervention.

We would advocate as a college, and I would suggest as a clinician, that good decisions about our patients’ needs are made in a multidisciplinary way. That should be considered in the model of how to meet people’s needs in whatever way they present, but particularly for people who have difficulties and are suffering in a way that makes them feel that they do not want to continue living.

In the interests of time, to allow everybody to ask their question, will Members indicate which of the panel members they would like to answer so that only one gives an answer? That allows everybody to get in.

Q We have had a lot of conversations and taken a lot of evidence over the last few days about a gag clause to prohibit medical professionals raising assisted dying as part of the options at end of life. We have heard from different states and jurisdictions on whether or not that is something that they had. Broadly speaking, the consensus was that it did not seem to work. Dr Mulholland or Dr Price, I wondered if you had any comment on that.

Dr Mulholland:

That is something we have been thinking about carefully at the RCGP. Part of our normal discussion will often open it up for patients to lead discussions around their end of life. We see there could be potential restrictions for that clinical consultation with a gag order. We very much follow the opinion I heard from Dr Green from the British Medical Association earlier in the week. We go along with that.

We are very protective of our relationship as GPs, and want to give patients the options that they might want to choose for themselves. We are not usually pushing anyone to any decision, but supporting them through their end-of-life journey. We would want to protect that in whatever way, so we therefore feel that a service we can signpost to would be the most appropriate thing as the next step.

Dr Price:

As a psychiatrist and as a representative of the psychiatric profession, it is noted in the Bill that mental disorder is a specific exclusion. It is very unlikely that a psychiatrist would suggest or bring up assisted dying in a conversation.

I think a concern allied to that is people with mental disorder who request assisted dying from their psychiatrist. It may be clear to all that they do not meet eligibility criteria for that, but it is not absolutely clear in the Bill, as it is written, to what extent a psychiatrist would have to comply with a wish for that person to progress to that first assessment. There is quite a lot involved in getting to that first official assessment, such as making a declaration and providing identification. A psychiatrist might therefore have to be involved to quite an extent in supporting that person to get there if that is their right and their wish, even though it may be clear to all that they do not meet eligibility criteria if that is the primary reason for their asking to end their life.

Q My question is also for you, Dr Price. The Royal College of Psychiatrists has been really clear in its statement that we as parliamentarians have to consider the outstanding questions about a person’s capacity to decide to end their own life, and whether it can be reliably assessed, and you particularly cite the implications for those with mental disorders, intellectual disabilities and neurodevelopmental conditions. Do you believe that anyone requesting assisted dying should be assessed automatically by a psychiatrist, or that certain criteria should have to be met for a psychiatric assessment to be undertaken?

Dr Price:

If I take you to thinking about what an assessment of capacity would normally look like, if we think about clinical practice, a psychiatrist would normally get involved in an assessment of capacity if the decision maker was unclear about whether that person could make a decision. The psychiatrist’s role in that capacity assessment would be to look for the presence of mental disorder, and at whether mental disorder was likely to be impacting on that person’s decision making. They would advise the decision maker, and the decision maker would then have the clinical role of thinking about that information and assessing capacity with that in mind.

Psychiatrists sometimes assess capacity and make the determination, but it is usually about psychiatric intervention and issues that are within their area of clinical expertise, such as care and treatment, capacity assessment around the Mental Health Act 1983 and whether somebody is able to consent to their treatment. In the Bill, I am not absolutely clear whether the psychiatrist is considered to be a primary decision maker on whether somebody should be eligible based on capacity, or whether their role is to advise the decision maker, who would be the primary doctor or one of two doctors.

Should a psychiatrist be involved in every case? If there is a view that psychiatric disorders should be assessed for, and ideally diagnosed or ruled out, in every case, a psychiatrist might have a role. If they are seen as an expert support to the primary decision maker, that decision maker would need to decide whether a psychiatrist was needed in every case. We know from Oregon over the years that psychiatrists were involved very frequently at the beginning of the process, and now they are involved by request in around 3% of completed assisted dying cases. We do not have data on what the involvement is across all requests.

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.

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.

Q I take that on board fully, so thank you for those helpful comments. In terms of capacity assessment, point 12 in the feedback and the written evidence from the Royal College of Psychiatrists mentions having multiple opportunities to assess capacity. To provide reassurance on that, those are in the Bill—I think there are four or five opportunities to assess capacity.

My question relates to point 15 in your written evidence, around the Human Tissue Authority. This is a model I looked at in terms of the decision making on coercion and capacity around people involved in organ donation. Can you tell me a little about that, and whether you think that there are parallels? It is a very serious decision, so we are in that territory. This is about what that looks like and what the role of psychiatrists is. We have talked a little about this already, but if we were to take this multidisciplinary approach, which I think is really powerful, what should the role of psychiatrists be?

Dr Price:

On the role of an oversight group, one of the risks with individual practitioners doing these sorts of assessments is that they may do it once or twice in their career. What we know is likely to happen is that a smaller number of practitioners will do lots of assessments and build up individual expertise. However, it might be that a particular practitioner does this only for a patient who they know, or only a few times. Therefore, in terms of building up through repetition the sort of expertise that somebody such as me might have in the mental healthcare of an older person—thousands of patients over a couple of decades—an external group that understands the standards and the process should be able to scrutinise things at the time.

There are a number of bodies that do that not just for organ donation, but across lots of different services. We have them for liaison psychiatry, and they might have them for electroconvulsive therapy services, for example. They are not extraordinary or unusual, but they ensure that there is some consistency and reliability and that the assessments are of a standard. Scrutinising assessments after somebody has completed the process is useful for everybody who comes afterwards; it may not ensure that the quality was there for that individual. That would be the rationale for that sort of approach. Forgive me, but would you ask me the second part of your question again?

Q I think you have answered it, but it was whether there was any specific detail about the Human Tissue Authority, how it operates and what that looks like.

Dr Price:

I do not have lots of individual experience with that group, because I do not work within a specific service. But it is an example of a model that is in operation, and hopefully I have described the sorts of characteristics and why they are there.

Q My question is directed to Dr Mulholland. Thank you to the Royal College of General Practitioners for the helpful written evidence. I want to pick up on something in it, which is summarised in paragraph 6 but gone into in more detail in paragraph 7, and that is around the refusal of practitioners to engage in the assisted dying process. I note the wording that has been used by the Royal College, which is that GPs and any other healthcare professionals can refuse “on any ground”. That is distinct from the Abortion Act 1967, which in section 4(1) sets out that it can be a conscientious objection. Can you explain why you have decided to take what appears to be a broader expansion of that definition, and why you have chosen that particular wording?

Dr Mulholland:

We are aware that we have a range of views in RCGP across general practitioners. Some of them have very strong views for or against based on moral grounds, and some of those are based on religious grounds—traditional conscientious objection grounds. But others do not want to take part in assisted dying just because they do not want to; they do not feel it is part of what being a GP is, or part of what they trained for.

In discussion with colleagues today, someone shared with me that for 35 years they have spent their time trying to extend the life of patients—that has been our role—and to help them towards the end of life. It is a philosophical change if they start to think about whether the patient’s life should end earlier. There are some colleagues who may decide that for those reasons, they do not want to take part in this. There will be others who very definitely do. We have that range, so we feel that a doctor or a health professional should have the right not to take part on any ground, and that should be protected—they should not feel the obligation to do something that they do not feel is within their wishes.

Q My question is to Dr Price. We heard yesterday from Professor House and this afternoon from Professor Owen, who were talking about capacity and coercion. They also talked about how different people’s life experiences impact their ability and their state of mind, and the lack of research or evidence in that area—the courts are grappling with those issues at the moment. Is there any evidence about the effect on patients’ mental health when they have a diagnosis of a terminal or serious physical illness?

Dr Price:

There is a lot of research evidence around depression in people with palliative care needs and people nearing the end of life. We know that depression is common, and across a number of studies it is at around 20%—much more common than in the general population. We know that depression is strongly associated with a wish to hasten death, and that if depression is found and treated in that group of patients, there will be significant change in the wish to hasten death.

There are a number of associations other than depression with a wish to hasten death, and they include difficult symptom experience, poor functional status—needing a lot of help with things—and being socially isolated. Those are really key ones. They also include a sense of loss of dignity and feeling like a burden on others. These things can all come together to make life feel very unbearable. We know that there is also an overlap between a wish to hasten death, which is a response to suffering, and feeling that one is better off dead, ending one’s own life or harming oneself. I was involved in a study where we asked people both the wording of “a wish to hasten death” and the suicide question from the PHQ9, which is a depression screening tool. Those who had a wish to hasten death were 18 times more likely to also feel suicidal, according to the psychiatric definition, than people who did not have a wish to hasten death. There is a strong association.

Q My question is for Dr Price as well, please. We heard in the week from the chief medical officer earlier, who said that he was “relieved” that this Act based capacity on the Mental Capacity Act, noting that it already provides that

“the more serious the decision, the greater the level of capacity”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]

and that it is used in tens, if not hundreds, of life and death cases in the NHS every week. The example he gave was someone refusing blood products that they would need to continue their life. In the light of that, I suppose I am a bit confused about your evidence saying that the MCA is not suitable for life or death decisions of this type. Do you think the MCA is not fit for purpose for those current life or death decisions that are being made, or is there something about the life or death decisions that would be made in an assisted dying context that makes that different?

Dr Price:

The assumption that the Mental Capacity Act can translate neatly into this specific decision without a really clear sense of what that would look like in clinical practice is something that needs more careful thought.

I was involved in research in this area, and one of the things that I did was to scrutinise the concept of capacity as discussed in a number of forums—for example, the Commission on Assisted Dying, discussions in the House of Lords, and also interviews with doctors in England and Wales and in Oregon. There is a broad sense of what capacity is. For some, it is a very tight, cognitive definition that would mean that in practice, in assisted dying, most people would be found to be capacitous. Those who advocate a much broader sense of what capacity is—these can be contained within the framework of the Mental Capacity Act—would advocate a much broader sense of what that is, thinking about values and the person’s life experience and making more judgments, really, about that person’s life in a general sense.

What I do not think we have really pinned down is what concept of capacity is operating in the thoughts behind this Bill. Is it enough to say that we will essentially refer to the Mental Capacity Act, or do we need to be more specific about what is capacity for this decision? Is it sufficient to say, “We will refer out”, or do we need it on the face of the Bill so that anybody assessing capacity for this decision knows exactly what they should be doing and exactly how they should be having that conversation? Even though you may be operating within a legal framework, I think that the actual conversation —the actual content—will vary across practitioners. Is that good enough? Is that sufficient? Is that a good enough standard? When I do a capacity assessment, I have in mind that it may be appealed against—that is somebody’s right—and it should be available for scrutiny by a court. Essentially, that is the standard we are looking for, so it needs to be clear where the standard lies.

Q I also want to explore this issue of capacity a little further with Dr Price, because I share my colleague’s slight confusion.

You talked about a percentage who wish to hasten death. The people we are talking about are facing death in any event within a foreseeable period, and they may be contemplating a death that is not pleasant. Some of the characteristics you talked about are presumably to be expected and may not necessarily interfere with their ability to make rational decisions in what they believe is their own best interest. In those circumstances, I do not understand why the Mental Capacity Act would not apply. I understand that you may be coming at it from a practitioner point of view, but if I make a decision to decline treatment to hasten my own death, I am not sure I would necessarily see that as qualitatively different, from the point of view of my own capacity, from saying, “I know I am going to die in three months’ time and I would like you to assist me to die slightly earlier.” Why are the two qualitatively different, from an MCA point of view? At the moment, one would be dealt with through the MCA, but you are saying the second would not necessarily be.

Dr Price:

You are equating a refusal of treatment, in capacity terms, to hastening death by assisted dying. If those two things are equated, in terms of the gravity and the quality of the decision, the Mental Capacity Act may well be sufficient, but there are differences. There are differences in the information that the person would need and what they would need to understand. They would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are—all of those things.

The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment. This is an area where we need to think carefully about whether the processes of the Mental Capacity Act, as it stands, map neatly enough on to that decision to make it workable.

Q Dr Mulholland, I want to push a little on where you were saying the royal college sits on the ability of members to say that they would not want to participate in assisted dying, if it came through, and on your written evidence saying that you would like to see a separate body. Given that many GPs are already very much involved in the care of their patients and will often be doing a lot of palliative care themselves, particularly around medications, and given that the Bill is about terminally ill adults with a diagnosis of six months left to live, do you mean that all GPs would stop at that six months and it would go over to an independent body, or are you saying that those GPs who want to continue that care could do so but that those who do not want to be involved in a potential route to assisted dying would step out? I would like a little clarity on that, given the person-centred care that so many GPs do so well.

Dr Mulholland:

The shape of the service is not set out in the Bill. We would say that GPs need to have a space where they can step away from it: that is the key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment. This is an additional thing; this is not part of our core job. We think that a separate service—it may not just be GPs; there may be lots of different practitioners and health professionals involved —would sit better with that. You could then assess the capacity and assess those other parts that are so important and are in the Bill at the later stages.

The GP may have a role, but that would be very much up to the individual GP to decide. It would not be set out that they should be taking part. They would then probably be part of this additional service to which the others who are not taking part could signpost. We just want to make sure that there is that clear space.

As we have time, I call Danny Kruger.

Q Following straight on from that, do you imagine it to be an NHS-funded service if it is outside core general practice? If so, what might the implications be for resourcing, assuming that it was funded out of general NHS resources? In the practical terms of the Bill, what do you think of the provision that the co-ordinating doctor must remain present with the person until they die, bearing in mind that that might take some hours? I am interested in your view on the implications for resourcing the service.

Dr Mulholland:

Fortunately, that is not the RCGP’s bit, but I think we would be very much concerned. In our principles, we were clear that we thought that there should be no reduction in core services in general practice, nor should there be any reduction, if the Bill goes through, in funding to palliative care services, which we know are often struggling as well. This should therefore be additionally funded. Whether it occurs in the NHS is not our decision, but we would be very concerned about health inequalities creeping into any part of the health service. We are aware of the differential that occurs in lots of things—life expectancy has come out again in recent reports between different parts of the country and people who live with different levels of poverty. If the Bill comes through, we will want to make sure that there is not a differential in who is able to access it. Whether that says that it should be NHS or private I am not sure, but that needs to be considered as part of whatever comes out of this.

Q I would like to go back to the point about depression, because it is common. In the general population, 20% are on antidepressants—on SSRIs. GPs diagnose the vast majority of depressions. Dr Mulholland, what are your thoughts on whether checking for demonstrable depression should be a standard part of the assessment before you refer people into the service? The idea of getting a psychiatrist who wanted assisted dying to see every case, given how difficult it is to see a psychiatrist in the NHS at present, would really limit the service.

Dr Mulholland:

We see a lot of people with mood disorders of different types and of different severities. Many people with depression who are treated with antidepressants carry out full-functioning jobs and lives because of the treatment that they have and because their depression is not of that severity. If someone had very severe depression and we were accessing our psychiatric colleagues, that would be a different decision, and perhaps it is not something that would happen at that point. Most people with depression, anxiety and other mental health problems would have capacity, because we would presume it under the Mental Capacity Act, so it is not necessarily an obstruction to people being referred for anything.

Q I will stay in the same territory, if I can. The Bill includes, very clearly, an opt-in model for doctors. I took that from the BMA, which was very clear on that, and I think it is very important. My slight concern, on which I would like you to expand, is about the removal of assisted dying from the holistic approach to end-of-life care and conversations that GPs have all the time—as do other healthcare professionals, including nurses, as we have heard this week. Where this works well in other jurisdictions is where it is integrated and where we talk about palliative care, we talk about decision making and we talk about choices. I would appreciate your thoughts on that concern.

On capacity, just to reflect on the previous panel, my view is that psychiatric assessment would not be necessary in every case. We have heard from three families this afternoon; we can probably all agree that there was a clear wish from those individuals that this was the choice they wanted to make. I agree with the colleague who said that there will be a percentage of people; that is why I think referral to a psychiatrist is important in those cases. Have you any more thoughts on that, Dr Mulholland?

Dr Mulholland:

As GPs, yes, holistic care is what we do—whole-person, biopsychosocial care. If we got into an end-of-life discussion with a patient and they expressed a wish to go through a route of assisted dying, should that be legal, that might still be part of a discussion that we would have with them. It is the active part of the process. The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.

We would not want to be out of the patient’s life. It is very difficult to be out of a patient’s life, but it may be that we are not part of that particular aspect of their care. It is the same when we refer to surgeons and hospitals; they have an episode of care elsewhere. This would be another episode that someone might be undertaking for that person. We will still have the families that we are part of; we will still be caring for them as well. We do not see them leaving general practice or general practitioners, but the assisted dying part of their health journey, or death journey, would perhaps be outside some people’s experience or expertise. You would need experts and people trained in it to be doing it, and not necessarily every GP.

Dr Price:

No matter what somebody’s reason is for entering the process or what the outcome is, we are very clear that anybody should be able to access really good evidence-based care so that this should not in any way derail, deflect or make people not think about really good care. People should get really thorough assessments, have the right professionals involved in their care and have treatment where they need it and would benefit from it. All the quality that we have and all the guidelines that we work to should still be adhered to. We should still be providing all of the other good-quality care that we can. It is important not to bypass that and not to take shortcuts because they have made that decision.

There are three people left who want to ask questions, so can I beg for brevity?

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

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

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

Dan Scorer:

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

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

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

Dan Scorer:

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

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

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

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

Professor Lewis:

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

Q Dr Price, you talked in your earlier evidence about depression. One Committee member suggested that 20% of people were on antidepressants; actually, the factual position is that 10% to 11% of the adults in this country are on antidepressant medication, according to the latest statistics. To be clear, are you saying that people who are depressed are more likely to ask for or go down the road of assisted dying?

Dr Price:

The evidence that we have from research—this is in populations who would fulfil the criteria in terms of terminal illness—is that the prevalence of depression is around 20%. That is across a number of populations. It is associated with a wish to hasten death. Depression might impact upon that person’s decision making; I am not saying that it absolutely would, but it might. Also, treatment might change their view. We know that there is a strong association, for example, between pain and a wish to hasten death. Unresolved physical symptoms make people want to die, and when that pain is better, people no longer feel that way.

That is borne out in my clinical practice. We will get urgent referrals to see somebody who wants to die and who they are very concerned about. Then the pain is under control: we see them that day or the next day and they say, “Do you know what? The pain’s better. I don’t feel like that any more.” When we think about symptoms, we need to think carefully about what is treatable and what is remediable. That may be about psychiatric interventions, but it is often about a biological, psychological and social approach.

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

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?

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.

On a point of order, Mrs Harris.

I am going to proceed now. I thank the hon. Member for Bexleyheath and Crayford for notice of his point of order. I am sure that the Member in charge and the Government have heard his points. If he wishes to look at procedural options, he should consult the Clerks in the Public Bill Office.

That brings us to the end of today’s sitting. The Committee will meet at 9.25 am on Tuesday 11 February to begin line-by-line consideration.

Ordered, That further consideration be now adjourned. —(Bambos Charalambous.)

Adjourned till Tuesday 11 February at twenty-five minutes past Nine o’clock.