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

Sojan Joseph Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[Sojan Joseph (Ashford) (Lab)]

I want to talk about amendment (b). The right hon. Member for North West Hampshire said that all members of the Royal College of Psychiatrists are already members of the General Medical Council. But not everyone on the General Medical Council is doing the same job. Psychiatrists are experts whose day-to-day job is to manage people’s mental state, and deal with people with suicidal thoughts and depression. They are the experts.

I do not think that all members of the Royal College of Psychiatrists are for or against the Bill, so it would be reasonable to listen to those people who are experts in assessing people’s mental state and whether they are having suicidal thoughts—that is part of their job. I strongly support that part of the provision.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I want to touch on a few bits of language that have been used so far that just worry me slightly. When we talk about the value that experts can add to this process, it is not necessarily helpful for someone to try to say that some experts would be better than others in that regard. The phrase “best person” was used in one particular instance and there were comments about whether or not experts would add balance.

The list that has been collated has taken the lead sponsoring Member of the Bill a number of weeks and months to produce. Everyone had the opportunity to feed into that process over a period of time. And on balance, it is a list that captures a wide spread of views and different organisations.

During this sitting a number of points of order have been made to correct the record. In the spirit of the Second Reading debate on the Bill in the House of Commons, we need to try to make sure that we are mindful of any comment we make, so that we do not seem to try to say things that are not necessarily accurate.

The point that was made earlier about eight witnesses coming from foreign jurisdictions is important. My understanding of this whole process is that it is not about our trying to decide whether the Bill should go ahead or not; it is about trying to understand what would be workable. So, hearing from people in places that have already implemented assisted dying is far more useful than hearing from people in countries that have not done so. We have also heard from Members about which of those countries are more comparable to us.

It does not necessarily help us if someone takes us round in circles and talks about the point rather than trying to get on with the work. I fear that that is where we are at with these amendments. If we are now trying to rejig who will give evidence and at what time, that stops us from doing the important job of scrutinising the legislation and hearing from the expert witnesses that we want to call.

These amendments are not minor changes. Regarding the list that has already been collated, I know that it has taken a lot of time to establish when the witnesses on it are free and available to give evidence. I am not sure that those witnesses referred to in the amendment have the same level of availability in their diaries. So, on balance, we should proceed as the lead Member has been putting it, and putting it so well.

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

Sojan Joseph Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Dr Opher]

Q I am interested in the opt-out whereby ethically, doctors can opt out of taking the decision for patients. Would they then need to steer someone towards another doctor, or can they just simply refuse to do it?

Professor Whitty: Duncan may wish to comment for nurses. For doctors, we should be very mindful of the fact that for some doctors, as for some citizens, this is a point of very strong principle indeed, therefore there will be a gradation of people feeling that they can personally be involved in it. I suspect that if they themselves did not feel able to do it—because of conscience or choice, or because they did not feel that they had the necessary skills—the great majority would have no problem referring on, but it might be an issue for some people.

Personally, my view is that we should be able to have the range, provided that people are aware in general that, if one person cannot provide it and then does not wish to discuss it, there are alternative routes. But that really is a matter for Parliament and if Parliament says, “No, actually, that is unfair on the patient, because then the patient is having to go through an extra step,” that is an alternative and perfectly reasonable principle. Parliament is going to have to balance those two principles; that is not for me as a doctor. I just think that that range of opinion needs to be thought through when people are coming to that final parliamentary decision.

Duncan Burton: If I could add to that, again, I think that bit about the wider workforce and how we would support them is really important. We have situations like this already. We have advice professionally around things such as abortions and working in embryo services and fertility, for example, so we need to make sure that the safeguards for our staff are really clear. As Chris has said, our staff will have a range of views and opinions on this, as will the wider public. So the work you do in creating this Bill is really important in terms of the advice that we give to people about signposting and having those conversations. Actually, our clinicians are having conversations every single day about the choices that people have at the end of their lives.

[Sojan Joseph (Ashford) (Lab)]

Q Sir Chris Whitty, you said that not all mental capacity assessments are safe. Do you think that hopelessness and low mood can affect someone’s capacity and that a sudden diagnosis of terminal illness can lead to some of those states—depression, low mood and hopelessness? Do you think that all doctors are capable of identifying those states?

Professor Whitty: I would hope that most doctors are capable of identifying that someone has some degree—or a large degree—of mental health distress, or mental health illness, if you wish. What not all doctors will feel comfortable doing is actually deciding whether that is sufficient to interfere with someone’s ability to make a decision with full capacity. That is where help from colleagues from psychiatry, and mental health more widely, is going to be useful.

But that should be good medical practice, in my view, under all circumstances. This Bill takes it to a high level of need because of the seriousness of the decisions being taken, but that is part of medical practice. Duncan will have discussed with senior nurses, when he when he was operating clinically, “Should we actually get an opinion from a mental health colleague”—either a community psychiatric nurse, if it is that kind of question, a psychiatrist or others—“to make that assessment?”

That is really the question, but I certainly would not want to be in a situation where the fact that someone with a terminal diagnosis will have some degree of low mood in itself just rules them out from any kind of medical intervention—this, or any other. That should not be the case. They have to have access to whatever the state and the medical profession are able to provide—again, obviously, depending on what Parliament decides on this particular Bill.

[Sojan Joseph]

Q My next question is for Duncan. Nurses who work in stressful environments, such as people working in mental health wards, are expected to get clinical supervision. Do you think that the nurses who are going to work in these areas—if this Bill passes—would require that specialist clinical supervision? And do you think the NHS will have the capacity to provide clinical supervision for the nurses working in those areas?

Duncan Burton: I think you are absolutely right—anybody working in stressful environments. If the Bill is passed, we will need to make sure that we have sufficient psychological support for nurses and doctors working in these services, as we do now for many of our nurses and other professionals working in these kinds of situations. People working in end of life, or cancer nurses, for example, often have psychological support to help them deal with some very difficult conversations with patients.

We would need to look at that and make sure that sufficient support was in place for anybody working in these situations. We would also need to be mindful about the wider workforce, given the issues from such a debate as this and how the decisions to signpost people on to services might create—for some people—moral injury. We do need to think about the support in place for those people.

[Jake Richards (Rother Valley) (Lab)]

Q You have touched on this, but perhaps we could have some further clarity. Certain amendments have been suggested that are essentially more prescriptive about what factors need to be taken into account and what steps clinicians would have to take when considering capacity in this context, as well as to inform consent and inform about the options available. Of course this is a matter for Parliament, but would you err on the side of trusting clinicians’ professional judgment within the legal framework, as it is—in terms of the Mental Capacity Act and the guidance on informed consent—or would you deem it suitable for further prescriptive steps to be put into primary legislation in this context?

Professor Whitty: It is entirely a matter for Parliament, at one level, but I can give a view. It goes back to the point that Naz Shah and others made earlier: the situations that people find themselves in are extraordinarily different—culturally, where they are in their lives, where their families are and a whole variety of other issues. Only the clinicians dealing with that person will really know all the different factors at play. If there is a good therapeutic relationship, and you would certainly hope there was, they should understand a whole variety of things that are very difficult for people sitting around this table to predict, however wise you are—although I am sure you are extraordinarily wise, to be clear. That was not my point. My point is that this is very difficult and I could not, at this point, write down a law that would be helpful to someone dealing with a whole range of different scenarios in which they are going to have to have an end-of-life discussion.

My own view, for what it is worth, is that I would do fewer things rather than more. That is partly because simplicity is the key to really good safeguards, in my experience. If the safeguards are really clear and simple, everybody understands them—if you ask six people, “What does this mean?”, those six will give you the same answer. The more complicated you make things, the more room there is for ambiguity and uncertainty—because different things are playing in—and the more difficult it is for the patient, their family and the medical and nursing professionals assisting them, to navigate the system.

Without in any sense wishing to curtail what Parliament might wish to do, I would make a plea for simplicity wherever possible and for accepting the extraordinary variety of people’s lives, which may have unpredictable consequences in terms of the way the end of their lives plays out.

--- Later in debate ---

[The Chair]

I am mindful of time, so this will probably be the last question.

[Sojan Joseph]

Q What is your view on the accuracy of the prognoses that we make in this country? If somebody is told that they may live for three years instead of six months, it will make a difference to their decision making. Does the GMC or the BMA have any data or studies on the accuracy of prognosis?

Mark Swindells: We do not hold data. I have seen the coverage of the Bill and the uncertainty. I think we would agree with a lot of what the chief medical officer said to you about the stepped decision that a doctor will make, depending on the importance of the situation. We try to capture that in our end-of-life care guidance. We also agree with the point about a doctor giving a central estimate. In the guidance we talk about, for example, issues with taking a second opinion where there is a greater degree of uncertainty, and the importance of doctors keeping up with the latest clinical knowledge on the efficacy of different treatment courses to come to that determination. We would agree that there is inevitably a degree of uncertainty in the central ground that the chief medical officer was talking about.

[The Chair]

As we still have a little time, I will call Kit Malthouse.

--- Later in debate ---

[Kim Leadbeater]

Yes. It sounds as though you are saying that your professionals are trained to have those conversations, which is very reassuring. Glyn, do you want to add anything?

Glyn Berry: Just to say that I absolutely agree with Professor Ranger. My experience of working with palliative nurses, and nurses in general, is long, and I have historically had exceptionally positive experiences and continue to do so. I think that we learn from each other, and it is really important that we can have those conversations with the person and ask questions that they might never have been asked before, such as, “What is it that you want?”

Professor Ranger is absolutely right in terms of autonomy and the person having control, because once that diagnosis is given, it can be a downward spiral for a person and they feel that they lose control. Patients and families talk about that—about having no control over what is happening. In effect, that is true in terms of what is happening in the disease or illness trajectory, but it is so important to remind a person that they are still the person that they were before that diagnosis, that they will continue to be that person, and that they still have a voice. In both our roles professionally, and alongside other clinicians, that is what we seek to do all the time. That is why a multidisciplinary team approach is so important.

Ultimately, we could find that, once you have asked all the appropriate questions and you have put potential safeguards in place following conversations, a person may not choose that particular point to end their life—as you mentioned, Kim—and may continue to live to the end of their natural life.

[Sojan Joseph]

Q When the RCN Scotland director gave evidence to the Scottish Parliament during the discussion of the Assisted Dying for Terminally Ill Adults (Scotland) Bill, he expressed the RCN’s concern that there were not sufficient safeguards in place to protect nurses and nursing practice around assisted dying in Scotland. Are you satisfied that the Bill we have before us in England and Wales addresses those concerns, or would you like to see amendments to ensure that the mental health and wellbeing of nurses involved in the process are protected, should the Bill become law?

Professor Ranger: Yes, we would want to see more support and protection for nurses. Of course, in the exploring of assisted dying legislation in Scotland, the second clinical decision maker is a nurse—so it a doctor and a nurse, whereas in England and Wales we are looking at two medically qualified practitioners. We absolutely want to make sure that the skills and support is there for nursing staff, and the ability—as I heard our medical colleagues saying—to not be involved in assisted dying absolutely has to be supported. It cannot be an expectation of the role; it has to be something you choose to proactively take part in as a conscious decision. It cannot ever be just an expectation of a nurse. We are absolutely adamant about that. The Bill cannot just support the needs of medical staff—nursing absolutely has to be included within that, both in skills and support.

[Kit Malthouse]

Q Professor, I want to test a little further the notion of a separate organisation that you mentioned. I can understand a separate discipline emerging, acquired by training, which is what happens in palliative care at the moment. We heard from previous witnesses that simplicity in safeguards is key, and in particular from the CMO that we have to avoid the last 6 months of someone’s life being a bureaucratic nightmare. At the moment, within palliative care and palliative nursing generally, you are already dealing with patients who are electing to refuse treatment, food and water, or are supporting patients following an advance directive. If you are supporting people in those circumstances as they move towards their death, do you think that it could be absorbed within the current functions, rather than having a separate organisation?

Professor Ranger: It is difficult. If I am honest, we have probably not explored that enough within our thinking as a college. We know what we would not want to see, which is a situation where there is an expectation that it becomes part of a pathway. It has got to be something you actively seek and opt into. I think how that is administered probably requires more thought, if I am honest, but I would not want to see it becoming an expectation of a pathway, because then the pressure on the individual may change. That is something we need to safeguard against.

I am worried that we should not make it so bureaucratic for the individual that it becomes impossible to have their autonomy respected, but how that happens is something that needs further exploration. We would fully support making it as clear and unbureaucratic for the person as humanly possible. But we would not want to see it as a sort of pathway within our current setting, because there could then be a sense that this is something that is externally influenced rather than being something that someone actively seeks for their autonomy.

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

Sojan Joseph Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[The Chair]

I will move on to Sojan Joseph, but perhaps you can pick this up. We have eight people wanting to ask questions and half an hour, tops.

[Sojan Joseph (Ashford) (Lab)]

Q Alex, thanks for the written evidence and your experience in capacity assessment. We heard from the previous panel, especially from the practising Dr Clarke, how complex it is. She was explaining how she does not think everyone has enough training in capacity assessment, and it is so complex in NHS healthcare areas. You made an observation about multidisciplinary involvement, rather than just two doctors. Do you think having more than two people involved in the decision making can strengthen the Bill?

Alex Ruck Keene: I think for many reasons it can. On the pure capacity side, this is, at one level, an existential question. This is not a healthcare decision but an existential decision. The more people we have who are able to bring their different perspectives—the social work perspective on the person’s social circumstances or the medical perspective on their medical condition—the better, so that we have as many eyes on the person and insights into the person as possible.

It is about trying to make sure that the decision goes back to whether we are really satisfied that the criteria set out at the beginning of the Bill are met. I personally think we should have MDTs, for instance, as you would have in a Mental Health Act detention, so that we have more than one pair of eyes on it from more than one discipline.

[Jack Abbott]

Q Sir Nicholas, I am going to paraphrase a little bit, but you said people with Parkinson’s will never get a terminal diagnosis, so this Bill is no use to you at all—I think you used stronger language than that when you made your original statement.

Sir Nicholas Mostyn: I was sort of taken by surprise when she asked the me the question in the pub, and I would not have phrased it like that in court 50.

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

Sojan Joseph Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Can I be explicit on the palliative care point? We have heard concerns from some in palliative care provision that there is anxiety that if we introduce this in the UK, there is a risk of deterioration in or failure to improve palliative care. Can you address that directly in the light of your experience?

Dr Mewett: I will say one thing briefly. Palliative Care Australia, which is our peak body, commissioned a report a few years back that studied the introduction of voluntary assisted dying legislation throughout the jurisdictions of the world. It concluded—this is a body that was not pro-VAD—that there was no adverse impact on palliative care services; indeed, it was often the contrary. Palliative care services were actually strengthened and enhanced because of the emphasis now being placed on more choices at the end of life. So I think that is an absolute furphy, as we say in Australia—you might say a red herring.

Palliative care services are not in any detriment. In fact, I would go on to say that this idea that palliative care doctors will leave in their droves if such legislation is introduced is just false. We respect conscientious objection in this space, and we have learned to live with each other and respect that people are entitled to set their own ethical limits.

[Sojan Joseph (Ashford) (Lab)]

Q Are you aware of any reported incidents of the misuse of medication that has been administered? As you explained earlier, patients can take the medication to their home.

Dr McLaren: We were made aware of one situation in Queensland last year. The eligible patient was given the medication, but they ended up in hospital and died from their disease. Their husband then went home, took the voluntary assisted dying medication and died. That was obviously a tragedy and no one wants that to occur, so I do not want to be flippant in talking about it, and I hope my comments are taken in the way they are intended.

We know that spousal suicides occur when people die, and we have had one case across Australia compared with thousands of successful cases of voluntary assisted dying conduct. No other cases have been evidenced, so the rate of that is incredibly low. The voluntary assisted dying team in Queensland, on the same day that they became aware of that case, put in steps to ensure that it would not happen again, which I believe included the required return of the medication.

We also have to balance the autonomy of having the medication available to patients at 2 in the morning, when they have an exacerbation of their pain and say that enough is enough, instead of waiting for business hours when the doctors are available to come and sit with them. It is a very delicate balance and there will always be that risk. I think the balance is struck well and the safety can be upheld by still providing the patients access to their own medication.

[The Chair]

I am going to take one final comment from Dr Mewett, as we are practically out of time. I am sorry that there is one Member who has not been called.

Dr Mewett: To be absolutely clear, spousal suicide occurs with leftover palliative care drugs, and we had two cases of that in Victoria prior to voluntary assisted dying. It is hardly surprising that that may occur in a very rare number of cases.

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

Sojan Joseph Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

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

[Sojan Joseph (Ashford) (Lab)]

Q Dr Furst, can I ask a follow-up about anorexia? I know that anorexia is not classified as a terminal illness, but long-term starvation can lead to severe physical health conditions, and patients may end up in palliative care. Do you have any experience of those cases in Australia?

Dr Furst: We have experience of those cases in palliative care, but I would still say that they are not eligible for voluntary assisted dying. None of us would feel comfortable, because the condition has to be irreversible. Capacity-wise, you would have to make sure that they had capacity, and I would question whether someone that is anorexic truly has capacity around their illness.

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Mr Greenwich, we are minded that as well as passing really good legislation we want to get public confidence behind this. We have heard a level of concern from disabled people’s representative bodies about the inadvertent implications of this law for disabled people. Were those concerns shared when you took your legislation through, and how it has gone since the implementation of the legislation?

Alex Greenwich: In New South Wales, and across Australia, having a disability or complex mental health issue like anorexia does not make you eligible at all for voluntary assisted dying. The legislation we are dealing with and you are dealing with is not for people with a disability or anorexia nervosa, and not for people who feel they are a burden. It is for people with a terminal illness who may want the choice of a death that is better than what the illness would otherwise provide.

We worked closely with disability groups in New South Wales. Their main concern was that they would be treated equally in terms of access to the law if a person with a disability had a terminal illness. The key point is that this legislation is a safeguard to those concerns. To the point about people who are starving themselves, that is happening today in the UK because people do not have access to voluntary assisted dying. They are starving themselves to death rather than accessing a regulated scheme where they can discuss all their options and choices.

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

Sojan Joseph Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Professor Hoyano, the Bill would establish offences relating to coercion, pressure and so on. In the processes set out, there are a number of checkpoints, for want of a better term, at which a person seeking assisted dying may talk to doctors or others. What are your observations on how the criminal construct of offences is linked to the different opportunities for an individual seeking assisted dying to have conversations? In your view, is it likely to lead to the identification of those offences? How does that contrast with some of the considerations at the moment, where people are withdrawing treatment in a life or death situation, for example?

Professor Hoyano: 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. I point particularly to the withdrawal of medical treatment at the request of the patient, even if that will inevitably lead to death. 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 and are acting without coercion from external sources. Doctors have to make those assessments all the time.

I suggest that it is perhaps a convenient fallacy to say that pulling the plug on a respirator or stopping artificial nutrition and hydration is a negative act, whereas giving a patient a syringe to end their own life is a positive act. I realise that with the Tony Bland case it was convenient to say that, but there is no doubt that most people on the street would say that pulling the plug on a respirator is a positive act, and yet doctors and nurses are required to do that every day in the NHS, because that is the patient’s autonomy. If there is any question about either coercion or capacity, the Court of Protection steps in and has the jurisdiction to make those decisions.

The Court of Protection should, I believe, be the court that is supervising this, not the High Court. Three levels of judges sit in the Court of Protection; I suggest that a High Court judge be specified, which would mean a statutory amendment to extend the jurisdiction of the Court of Protection. The Court of Protection makes decisions every day on whether a patient has the mental capacity to make decisions about their own medical treatment. It is accustomed to doing that, and one aspect of that analysis is whether the patient is being coerced externally.

Generally speaking, when a patient says, “I don’t want to be on a respirator any longer; I know I’m going to die,” we do not ask questions. As I understand it, it is not part of the protocol to say, “Are you doing this because you are worried about being a burden on the NHS?”, because their personal autonomy is the overriding principle governing medical decision making in relation to the patient. I hope that that answers your question.

[Sojan Joseph (Ashford) (Lab)]

Q Professor Owen, written evidence from the Royal College of Psychiatrists states that 65% of psychiatrists

“are not confident that consent can act as an adequate safeguard”.

On mental capacity, it says:

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

What is your view?

Professor Owen: That is important evidence, because it comes from a body of practitioners who are very used to doing mental capacity assessments. I think that the vast majority of that sample were consultant psychiatrists, so the pool, as it were, was one of considerable experience. 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.

It is true that psychiatrists—liaison psychiatrists particularly; I have had experience with this myself, clinically and in relation to Court of Protection matters—will be involved with assessing capacity to make decisions to refuse life-sustaining treatment. Those decisions can be quite vexed and can go to the court, and the court can struggle with them.

An important question for the Committee is the distinction—or the similarity and difference, but I think that there are key differences—between the decision to refuse a treatment that is life-sustaining, of which the Court of Protection does have experience, and the decision to decide to end one’s own life. They are conceptually different decisions. I can outline some of the similarities and the differences now, but it might be helpful to take submissions specifically on that question, because it is very important and I think that there is some confusion about it. If you would find it helpful, the complex life and death decisions group could write a statement to elaborate on some of the issues. In summary, I think that that evidence from the Royal College of Psychiatrists is significant, in terms of the confidence.

[Sarah Green (Chesham and Amersham) (LD)]

Q Dr Ward, I am keen to hear about your work on the Bill in the Scottish Parliament and about how best practice in other jurisdictions has informed the legislation that is currently going through Holyrood. How has it influenced and informed that draft?

Dr Ward: I was the adviser on the previous Bill in Scotland as well, under Margo MacDonald MSP and Patrick Harvie MSP. That was in session 4 of our Parliament; we then did not have a Bill in session 5, which is when we set up things like the cross-party working group on end-of-life choices and I did the PhD. Luckily, we saw a domino effect internationally in session 5; there were various jurisdictions legislating for it. When we came to draft this legislation in 2021, in session 6 of the Parliament, we had decades of data that we had not had when Margo made her first attempt back in 2010.

With the Assisted Dying for Terminally Ill Adults (Scotland) Bill, we have been working with international experts since 2021, and we have had various consultation processes. It is currently with the Health Committee of the Scottish Parliament. We set up a medical advisory group, chaired by Dr Sandesh Gulhane MSP: a group of almost a dozen practitioners in palliative care, mental health experts, geriatricians and other interested stakeholders. It produced a report for us on the medicinal aspects of the Bill.

That has been a four-year process. I understand that concerns have been voiced in this Committee that things have proceeded at pace, but I would argue that you are not pioneers. There is 20 or 30 years’ worth of data, which we have drawn on in Scotland, and there is four years’ worth of work in Scotland that this Committee and this Parliament could look to.

I would also make the point that the data is peer-reviewed and evidence-based. You really have to trust your international colleagues. The data is from Government bodies, from Health Departments, from independent academic peer-reviewed work and from independent review boards. We are now looking at fact rather than at falsehoods or concerns, as we were back in 2010.

--- Later in debate ---

[Dr Tidball]

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

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

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

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

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

[Sojan Joseph]

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

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

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

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

[Sojan Joseph]

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.

[The Chair]

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.

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

Sojan Joseph Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[The Chair]

I am pleased that people feel they are free to make those points. It is for the Committee to decide how fast to move through the Bill.

[Sojan Joseph (Ashford) (Lab)]

Further to those points of order, Ms McVey. I also assume that we are expecting more written evidence to come through. We Committee members are here for the whole day. I hear you say, Ms McVey, that this is normal practice, but considering the importance of the Bill, I assume there will be a lot more written evidence by the end of today. It would be good to consider how Committee members are able to go through that written evidence before we come back here tomorrow morning.

[The Chair]

As I expressed before, it is for the Committee to decide. Should Members feel they have not had enough time, it is for the Committee to raise a point on that. Should people wish to have an adjourn, they could move that and the Committee would vote on it.

--- Later in debate ---

[Dr Tidball]

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

[Sojan Joseph]

Will my hon. Friend give way?

[Dr Tidball]

I will make some progress.

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

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

He continued later:

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

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

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

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

He continued:

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

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

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

Sojan Joseph Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Naz Shah]

It is a pleasure to follow the hon. Lady. Just to put it out there, to begin with on amendment 23, the Court of Appeal, in the case of “Re T (Adult: Refusal of Medical Treatment)”, held that undue influence was relevant to medical decisions and said that doctors must check for it. Undue influence is about power imbalance, rather than outright coercion.

That brings me nicely on to the points we discussed in some detail yesterday. The right hon. Member for North West Hampshire talked about having a conversation with his family, with his wife and children and so on. I will give another example. Say there is a woman who has been the victim of domestic violence—we know this happens; we know two women a week are killed in this country, to this day—and she is subtly encouraged: “Sweetheart, you’ve got a diagnosis and the option is to have this.” There is a fine line, and the fine line conversation has been mentioned quite often as well, but I would rather stay on the side of caution with that fine line conversation when it comes to domestic abuse, coercion and the power imbalance in a relationship.

Let me come back to that woman or elderly person whose loved ones have the conversation—and they indeed have the conversation; it happens every day. Ask any victim of domestic violence. On average, it takes a woman 40 attempts to leave an abusive partner—that is the fact—because we do not even recognise it.

I know somebody who recently left an abusive partner—that took three years of encouragement because she did not recognise that what was happening to her was about power and control. It is when power is juxtaposed with vulnerability that there is the potential for abuse. That happens—it happens every single day. Victims of domestic abuse are not just younger people; according to Age Concern, over 375,000 older people are at risk of domestic abuse.

The abuse of people is a cancer in our society, and that very subtle power imbalance is where the fine line is crossed. Given that the Court of Appeal has ruled and is already saying that medics have to look out for undue influence, I would argue that amendment 23 actually strengthens the Bill. My hon. Friend the Member for Spen Valley has repeatedly insisted that this Bill needs to be the tightest in the world. How does the amendment not complement her view? How does it not strengthen the Bill, to protect victims?

[Sojan Joseph (Ashford) (Lab)]

My hon. Friend mentioned domestic violence and vulnerable people. Do we not also need to think about the many people in hospital beds and nursing homes who may not have any relatives? They might get influenced or encouraged to choose this route by professionals because of the pressure on the NHS and hospices. Amendment 23 would strengthen the Bill in that respect as well.

[Naz Shah]

I would like to hope that that would never happen; I have a huge love of the NHS and of the people I know in it who make decisions every day, particularly given all the cuts—even more so, post covid. But there is that risk; I would like to hope that it is very small.

When it comes to mental health, the debate is similar to the one about capacity: it is the same conversation about whether something is fit for purpose. Just because something already exists does not mean that it will necessarily suit what we are doing here.

On International Women’s Day, the Minister for Safeguarding and Violence against Women and Girls, my hon. Friend the Member for Birmingham Yardley (Jess Phillips), eloquently reads out a list of victims of domestic violence who have been murdered. There are two a week—I make no apologies for keeping coming back to this. Only yesterday, there was an article about women’s charities that support victims of domestic abuse citing their concerns. The amendment speaks to those concerns. How could it not be supportive?

I am not convinced by the idea that the amendment would introduce an element of jeopardy. People make decisions with their families every day. We sit and have conversations. I speak from a position of privilege—as we all do in this place, frankly. We speak from positions of privilege about how we could have these conversations with our families. But we know that inequalities exist and that some people do not have those privileges. We know that society is unequal. We know that domestic abuse, elder abuse and mental health issues exist.

In my constituency, it takes 14 months just to get a child and adolescent mental health services referral for a young person; I appreciate that we are not talking about young people. My point is that there is a real backlog in the NHS—in terms of waiting times and pain medication, for example. Palliative care is not equal, as I said yesterday. I am genuinely asking Committee members: which bit of the amendment can we not support?

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

Sojan Joseph Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

I absolutely agree. Nobody in this Committee, from what I have heard over the weeks of evidence that we have taken, is suggesting in any way that we are dismissive of people who actually need an assisted death and would benefit from the Bill. As I have said previously, and as Dr Jamilla said very clearly, there are some patients who clinically would benefit from an intervention such as an assisted death. I came on to this Bill Committee to ensure we have the best legislation and safeguards in place. The Bill currently does not ensure that people are aware of the options. This amendment would ensure that people have considered all options and can make an informed choice. If there is no requirement to speak to a specialist, I am afraid the Bill would do a disservice to those who might want to use it to seek an assisted death by not presenting them with those options.

In evidence from the representative of the Royal College of Psychiatrists, we heard an example of somebody who was in lots of pain and decided to seek an assisted death, but changed their mind once they understood that their pain could be alleviated. That is what this amendment is about. I urge the Committee to vote for it, because it is fundamental that we enable people to make an informed choice and to understand the services and options available to them.

[Sojan Joseph (Ashford) (Lab)]

Does my hon. Friend think that giving everyone access to palliative care would resolve some of the concerns about coercion and consent?

[Naz Shah]

My hon. Friend comes from a mental health background, and I appreciate his expertise. We have talked a great deal about coercion—we have debated it for hours and hours—and I agree palliative care specialists, who deal with such issues as their day job, can provide that intervention and support the patient by establishing a much stronger relationship with them. I added my name to this amendment because I feel very strongly that palliative care must be a central part of the Bill if it is to provide patients a real choice at end of life. There should not be an assumption, as there is in the Bill as drafted, that assisted death is the predominant option once a person embarks on this pathway.

Let me return to the matter of minoritised voices. Dr Jamilla submitted written evidence, and spoke passionately, about the options available to people from black and minority ethnic communities. She said that they feel very much ignored. As I have said previously, palliative care is not fit for purpose because there is postcode lottery: provision depends on where a person lives, whether they have a hospice nearby, what the hospital options are and so on. There is a fear among ethnic minority communities of being pushed towards assisted death.

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

Sojan Joseph Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Jake Richards]

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

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

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

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

[Sojan Joseph (Ashford) (Lab)]

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

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

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

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

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

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

[Naz Shah]

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

[Sojan Joseph]

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

[Kim Leadbeater]

To be clear, the word “independent” means independent of the other doctor, not independent of the patient. The independent doctor could well know the patient. I hope that that clarifies that point.

[Sojan Joseph]

But it could be the other way around. The Bill does not clarify that the second doctor would know the patient at all.

[Kim Leadbeater]

It is not guaranteed.

[Sojan Joseph]

It is not guaranteed. I am grateful for that intervention.

We have talked about training for all registered professionals who will be involved in the capacity assessments. As someone who has carried out that training many times, I draw the attention of the Committee to Dr Rachel—

[The Chair]

Order.

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

Sojan Joseph Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Lewis Atkinson]

No, I am going to make some progress because I am conscious of the time, and we want to get through these provisions.

I want to speak in favour of amendments 108 and 183. Those two amendments, taken together with amendment 275, create additional safeguards and assurances on the points made by colleagues on Second Reading that this is not cannot be raised in isolation—as my hon. Friend the Member for Spen Valley has made clear should not be the case—and that referral should always be offered to specialists in palliative and wider care.

As others have said, those patients will almost undoubtedly be in touch with a variety of different multidisciplinary healthcare teams. The suggestion that there must be a further referral to another multidisciplinary team under the Bill, regardless of which teams an individual is seeing, is therefore not appropriate. I also refer Members to amendment 6 to clause 9, which states that a referral to a psychiatrist “must” be made. My hon. Friend the Member for Spen Valley has indicated that she is in favour of that amendment. That reinforces the fact that there will be a multidisciplinary approach, including psychiatric input, where there is any doubt before the third-tier stage of the panel.

For those reasons, I do not feel the other amendments—285, 343 and so on—are necessary. By accepting amendments 275, 108 and 183, we will be able to strengthen the Bill in the way that was set out to the House, and as we heard in oral and written evidence.

[Sojan Joseph (Ashford) (Lab)]

I rise in support of the amendments, especially amendments 342 and 425. We have discussed various aspects of the Bill, especially capacity, coercion and medical practices, under many previous amendments. As somebody who worked as a mental health nurse for many years, and who worked as part of a multidisciplinary team, I think that amendments 342 and 425 are some of the most important.

Amendment 342 talks about the preliminary conversation with the medical practitioner with whom the patient makes contact. Do we not think that the doctor who knows most about that patient is the best person to have that preliminary discussion? They will have the most information about them. When the patient, who has gone through so much difficulty, goes to their doctor or to a GP who knows them well and says, “I would like to choose the assisted dying pathway,” would that doctor then say, “I do not want to discuss this. Somebody else will.”?

[Kim Leadbeater]

Is my hon. Friend not concerned about the concept of conscientious objection? The BMA strongly opposes amendment 342, because it does not think doctors should be obligated to have that initial conversation if they do not want to.

[Sojan Joseph]

There are other people who support this concept, and they are the people who will be having the conversation—we have both sides of the argument. I believe that the best person to have that preliminary discussion would be the doctor who knows about that patient the most—about their circumstances, prognosis, family situation and pain. We talk about compassionate care, but where is the compassion in here? I am not saying that another doctor would deny that—but I am talking about compassion. Someone going through the most difficult time in their life would have the confidence to talk to the person who knows the most about them, which is why I fully support that the initial discussion should happen with them. I am not saying that they should say yes or no, but they should be talking about the care provisions and options available to the patient. Amendment 342 is one of the most important amendments we will debate.

I will move on to amendment 425. When I tabled amendment 1, my thinking was that a psychiatrist should be involved in these discussions, but I think amendment 425 will safeguard most of the concerns we have discussed in previous sittings. Amendment 425 talks about a “multidisciplinary team” and having a psychiatrist involved as well. Written evidence was sent to us on 29 January by the Royal College of General Practitioners, which recommended that a separate pathway that

“covered every stage of the process would ensure healthcare professionals of multiple disciplines…who wanted to do so could still opt in to provide assisted dying, but this would be arranged through a different pathway.”

The hon. Member for Sunderland Central spoke earlier about how patients may be going through many multidisciplinary teams already, but it could be that none of those multidisciplinary teams have talked with them about assisted dying. They could have been pharmacists or nurses talking about the patient’s care—not assisted dying. We are talking about setting up a multidisciplinary team with a mental health nurse, doctor and social worker who can look in detail at evidence of the patient’s capacity, whether they are choosing it because they feel they are a burden, and whether there is any coercion. I think that is a safeguard for most of the concerns we have discussed in previous sessions. I would love to see a psychiatrist involved, because psychiatrists deal with some of the most challenging patients, including those with suicidal thoughts, on a day-to-day basis. They are the most experienced people to carry out a capacity assessment and, if they are a part of the multidisciplinary team, it will safeguard the Bill.

I strongly support amendment 425 and I urge Members to consider it. It will reassure many people who are concerned about some of the discussions. I know it also talks about giving power to the Secretary of State to formalise who should be part of the multidisciplinary team, which would be a discussion for later. I thank the Committee for giving me the opportunity to speak in support of the amendment.

[Naz Shah]

I rise to speak to amendments 285 and 286, tabled by my hon. Friend the Member for York Central. On amendment 285, we have to understand that, in medicine, clinicians only retain the areas of expertise in which they have clear confidence. I am grateful to my hon. Friend the Member for Stroud, who made very powerful points that, if anything, actually support this amendment. This is why we have developed a health system with so many specialities. Although generalists have incredible knowledge, they cannot confess to the depth of understanding that someone who dedicates their career to a speciality has. Therefore, the amendment seeks to draw on such knowledge rather than assume that a GP, for example, specialises in all fields of medicine.

Clause 4(4) would require a generalist to work alongside a specialist to secure the understanding of a patient’s diagnosis and prognosis. Once again, I recognise that my hon. Friend the Member for Stroud suggested that that already happens and does not need to be tied up in law. However, I feel the amendment gives us more protections if we are to make the Bill safe. It would then enable specialist clinical advice to be provided in the conversation about treatment options.

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

Sojan Joseph Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Liz Saville Roberts]

I rise to speak to amendment 413, which would require a medical practitioner in Wales who conducts a preliminary discussion under subsection (4) to discuss with the person their preferred language of Welsh or English. Amendments 414, 415, 416 and 417, tabled by the hon. Member for Ipswich, relate to adjustments for language and literacy barriers. I will speak to those amendments, but it is not my intention to divide the Committee on them. Although I am supportive of the drive behind the amendments from the hon. Member for Ipswich, they refer to a situation very different from that of Welsh and English, because the use of Welsh and English has particular statutory implications.

This is the first time I have risen to speak about how we need to tease out the Bill’s implications in the context of reserved and devolved powers, where justice and criminal law are reserved, while health and social care are devolved. Amendment 413 concerns the need, in my belief, to place in the Bill the requirement to determine whether a person wishes to use either Welsh or English in their initial discussions with registered medical practitioners. I firmly believe that this needs to be written into the legislation. Later amendments I have tabled to clauses 5 and 8, and new clause 18 and new schedule 2, also relate to the use of Welsh.

[Sojan Joseph (Ashford) (Lab)]

I fully support the amendments, but they say that the practitioner conducting the preliminary discussion should use an interpreter. Should the interpreter not also be available for all the interactions that follow on from the preliminary discussion?

--- Later in debate ---

[Sojan Joseph]

Does the hon. Member think that, if we bring in an agency from outside the NHS—from the private sector—this will become like a business?

[Danny Kruger]

The hon. Gentleman is absolutely right. The opportunity is there in the Bill for private businesses to be established to deliver assisted dying services. Indeed, it would be quite a lucrative money-making enterprise. Estimates have been given of between 5,000 and 17,000 assisted deaths per year, depending on how they are arrived at. If the charges employed by Dignitas—which is in a sense the model being proposed here—are anything to go by, it could be in the region of £5,000 to £10,000 per patient. Even a small proportion of that would be significant—a multimillion-pound business would be possible under the Bill. Advertising would also probably be possible; we saw TfL suggest that the Dignity in Dying adverts in the tube before Second Reading were compliant. There is no prohibition in the Bill on advertising or on people making money from it.

However, the Bill also specifies that this would be a state-protected service, so if it were to be a private enterprise, it would have all sorts of state protections that would not normally apply to private providers of anything. Under clause 25, the providers would be exempt from any civil liability for providing assistance under the Bill. Under clause 29, a death would be exempt from investigation under the Coroners and Justice Act 2009. Clause 30 says that a failure to comply with any code of practice

“does not of itself render a person liable to…criminal or civil proceedings”.

The only monitoring that would be done would be undertaken by the voluntary assisted dying commissioner, who is not an independent figure, but the person responsible for setting up the panels that approve the deaths.

--- Later in debate ---

[Sojan Joseph]

I rise to speak in support of the amendment. The documentation in our healthcare system is a very important matter. It helps us to share good practice and to learn from mistakes. Whether in secondary care, primary care or nursing homes, the quality and the safety of our patient care is monitored by the Care Quality Commission, which uses clinical documentation to carry out its process of monitoring that quality and safety. It is important that any conversation had with patients by the doctor, or by any medical professional or multidisciplinary team, is documented clearly. That will help to safeguard our patients.

--- Later in debate ---

[Sarah Olney]

I will not take up a huge amount of time, because a lot of what I wanted to say has been said in previous sittings, but I return to the issue of people who may request an assisted death who may also be suffering from a mental health condition. Amendment 271 was tabled by the right hon. Member for South West Wiltshire (Dr Murrison), and specifically concerns people who have received their terminal illness diagnosis less than six months ago and whose prognosis is less than 6 months in the future. The amendment specifically addresses the fact that the risk of suicide for people who are suffering from a terminal illness increases when the diagnosis has been made less than six months before.

Professor Louis Appleby is a key academic in the area of suicide prevention and advises the Government on it. Research by him and Professor Sleeman found:

“Diagnosis of severe conditions was associated with an increased risk of dying by suicide”.

In particular, they found:

“The increase in risk was more pronounced in the first six months after diagnosis or first treatment.”

They concluded that:

“A diagnosis of severe physical illness is associated with higher suicide risk. The interaction of physical and mental illness emphasises the importance of collaborative physical and mental health care in these patients.”

We talked at length in an earlier sitting about the risk that bringing in an assisted dying law would undermine suicide prevention strategies and efforts to address the issue of suicide. It is important that we return to this issue, and that we look seriously at the amendment in the name of the right hon. Member for South West Wiltshire, because it addresses the specific concern around those people who have had their diagnosis of terminal illness for less than six months and are therefore at a heightened risk of suicide.

NICE guidelines say that if someone is at risk of self-harm or suicide, a clinician must ensure that a psychosocial assessment has been carried out either by a mental health specialist or by a trained person in primary care. That should cover the person’s living arrangements, relationships, social support network, mental health disorders, risk factors, safeguarding concerns and so on. Professor Allan House told the Committee in oral evidence that this should be part of the assessment for assisted dying. He said the current assessment only answers the question:

“‘Is this person able to make decisions?’…it does not cover the psychological and social assessment.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 165, Q210.]

We have discussed at length the lack of the psychosocial assessment in relation to everybody who makes a request for an assisted death, but the amendment seeks to identify those who are at heightened risk of suicide—those who have received their diagnosis of terminal illness within the last six months—and specifically requires psychosocial assessments for those people.

Depression is common among those with terminal illness. Dr Price from the Royal College of Psychiatrists told the Committee that among

“people nearing the end of life…depression 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”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275, Q359.]

and that that wish is significantly alleviated if depression is treated, which is an extremely important point for the Committee to consider.

The Pathfinders Neuromuscular Alliance, which is a user-led charity for those with muscle-weakening conditions such as muscular dystrophy, have stated in written evidence:

“Pathfinders members have outlined how important it is to ensure psychological assessments are part of the process in order to ensure that the individual is in a position to make an informed decision. One member outlined:

‘I’ve been there, I’ve wanted to die, and I’ve been in the position where I would take that option if it was given to me, but looking back I can see I was depressed and now I’m so glad that I didn’t take that option.’”

Currently, the Bill does not require anyone to explore any psychosocial factors in respect of someone’s situation. Although the person can be referred to a psychiatrist under clause 9(3), that only covers a capacity assessment. Again, it only answers the question of whether the person is able to make decisions, and addresses none of the other relevant factors. In Oregon, there is more room to explore those factors—the doctor may refer a patient for counselling if the patient may be suffering from a psychiatric or psychological disorder or depression, causing impaired judgment.

On addressing the risk of social pressure and internalised feelings of burden, the British Geriatrics Society warned in its written evidence:

“There is an established link between frailty and feeling a burden to others, meaning many older people with treatable clinical frailty may choose an assisted death to avoid burdening their family, which we view as unacceptable.”

The Committee has already discussed at length the issue of older people or people with a terminal illness wishing to choose an assisted death motivated by the wish to save their family money. Dr Jerram, Dr Wagland and Dr Davis found that attitudes towards assisted dying changed over time. Patients closest to death were least likely to want assisted dying, suggesting that fear of suffering was the driving cause and that it may lessen as end of life care improves.

Psychosocial care is fundamental to good end-of-life care. Committee members and witnesses from other jurisdictions have said that palliative care and assisted dying can complement each other, and that assessment should be part of the picture. Glyn Berry told the Committee about the importance of

“the psychosocial aspect of palliative and end-of-life care”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 53, Q58.]

In its written evidence, the British Association of Social Workers said that

“good health care is not just about clinical interventions”,

but also about

“the wider social context in which a person lives their life…This is particularly pertinent with assisted dying.”

That needs to come before the first declaration, because once somebody has signed that declaration, they are already on a pathway. The amendment would provide an opportunity for people’s needs to be met at the first opportunity.

In conclusion, I emphasise the importance of a psychosocial intervention, which was stressed by a number of witnesses giving oral evidence to the Committee. We have discussed this issue at length. Earlier amendments have been voted down, but I stress the particular importance of the amendment 271 for that group of people who are in the first months of their diagnosis of a terminal illness and the raised level of risk of suicide that they present.

[Sojan Joseph]

As the hon. Member for Richmond Park says, we have repeatedly debated people’s mental health and how, once somebody has had a diagnosis of a terminal illness, it can have an impact on their decision making. Amendment 425, which we discussed earlier, is about having access to a multidisciplinary team. That team could have on it a social worker or a psychiatrist who would make a comprehensive assessment, which would cover amendment 271.

The amendment is an opportunity for the Committee to look into this issue, to make the Bill stronger, and to bring in safeguards for vulnerable people who may feel suicidal, and may feel a burden to society or to the healthcare system, and may choose this way. Those people who are vulnerable would have a psychosocial and mental health assessment, which would make the Bill stronger and safer.

[Lewis Atkinson]

I rise to speak against the amendment; there are significant issues with it both in practice and in principle. In terms of practice, I draw Members’ attention to the fact that the amendment does not mention a psychosocial assessment; it mentions mandating “a psychosocial intervention”. As defined by the World Health Organisation, a psychosocial intervention can be as brief as five minutes. I know that it is a brief intervention: I used to manage services delivering psychosocial interventions. Nowhere in the amendment is the type of psychosocial intervention or its purpose specified. If Members hope that the amendment will lead to a psychosocial assessment—

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

Sojan Joseph Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Stephen Kinnock]

Yes, I believe so. Photographic ID would be the standard to which we would aspire. I do not know whether there was anything else under her question? I think the answer is yes.

[Sojan Joseph (Ashford) (Lab)]

Could the Minister clarify whether the requirement for one year of residency in the UK means that a foreign citizen studying at a university here would be able to consider assisted dying?

[Stephen Kinnock]

I thank my hon. Friend for that intervention. We have the term “ordinarily resident” in the UK in clause 1. Obviously if the Committee sees fit to accept the amendment it would change to “resident”, which is a looser term. This matter would also be one for the Home Office, as the custodian of our rules and regulations on immigration, but my sense would be that if we stick with “ordinarily resident” then someone who is not ordinarily resident in the United Kingdom would not qualify for assisted dying.

As the Bill currently stands, the Secretary of State has the power but not the obligation to set these requirements in regulations. This amendment would remove this discretion and require the Secretary of State to specify what forms of ID must be provided.

Amendment 293 ensures that regulations on acceptable forms of proof of identify must be approved by both Houses of Parliament before coming into force, by requiring these regulations to follow the affirmative rather than the negative procedure. As I said earlier, the Government’s position is neutral, but I hope my observations—

--- Later in debate ---

[Rebecca Paul]

Different situations will give a different result. It is a complex situation. We could have a patient who, if they did not have an assisted death, would be on a palliative care pathway, which might not involve as much time from their GP—the assessing doctor, in that instance. If they moved on to the assisted dying pathway, however, the assessment process would need to start, and it has to happen quickly for all the reasons that I have set out.

The Bill relies on doctors being highly conscientious and hard-working, but it also risks taking them for granted if it makes no allowance for the present realities that they face in our healthcare system. This amendment tries to reflect and recognise that.

In November, the hon. Member for Stroud said,

“I have watched with horror as our NHS has gone from being the best health service in the world…to being a service on its knees.”—[Official Report, 6 November 2024; Vol. 756, c. 358.]

If the NHS is to get off its knees, surely we cannot afford for assisted suicide to jeopardise the care of patients who already struggle to get an appointment. We must recognise that there are people out there who cannot get an appointment to see their GP, and reflect that in the Bill.

[Sojan Joseph]

I rise to speak briefly to amendment 296. We all know how the NHS operates, how the appointment system works in the NHS and how long people have to wait to see a doctor. I do not think that my hon. Friend the Member for York Central tabled the amendment with any ill thought, but just to highlight the issue. I do not think that the amendment will make the Bill any safer or stronger, or safeguard anything, but the Committee needs to acknowledge it.

I will quote the Royal College of Physicians, which represents 40,000 doctors who primarily work in hospitals, including on palliative care. The Royal College of Physicians took a neutral position on the Bill. In its written evidence, it highlighted,

“We recognise that the ultimate decision on assisted dying rests with society through Parliament, however any changes to the law will significantly affect clinical practice beyond palliative care…Should the law change, the RCP strongly argues that assisted dying must not divert resources from end of life and palliative care provision, which are not currently adequate.”

With amendment 296, my hon. Friend the Member for York Central is trying to get the Committee to acknowledge that some NHS departments work with vacancies of 50 medical professionals. A patient who has been waiting for six months should not have their appointment cancelled because the provision here is prioritised. I think that is what my hon. Friend meant with her amendment, and I commend her thought about wider NHS provision.

[Danny Kruger]

I appreciate the point that the hon. Gentleman is making, and that he will not be able to support the amendment, but does he acknowledge that its purpose is to clarify the triage process that needs to be done by doctors? It is a perfectly appropriate request to make of doctors.

[Sojan Joseph]

I agree. It highlights the point that the impact assessment will be very important here, to see from where the resources are being pulled to provide this. The Committee should acknowledge amendment 296.

[Stephen Kinnock]

These amendments introduce requirements on the timing within which the co-ordinating doctor must carry out a first assessment once the first declaration is made by a person. I will turn first to amendment 296. As currently drafted, clause 7(1) requires that the co-ordinating doctor must carry out a first assessment

“as soon as reasonably practicable”

after a person has made a first declaration. Amendment 296 would require that after the first declaration is made, the co-ordinating doctor must arrange a mutually convenient time and date for the first assessment to take place, but it removes the stipulation that the assessment must be carried out as soon as reasonably practicable. The amendment would also require the date and time agreed not to jeopardise the care of other patients. The effect of the amendment may be to lengthen the period between the first declaration and the first assessment, in some cases.

Amendments 127 to 141 seek to ensure that the assessments, declarations and statements made throughout the Bill are finalised and recorded within 10 working days of being started. The amendments achieve this by inserting the term “within 10 working days” in place of

“as soon as reasonably practicable”

in clauses 7, 8, 16, 17, 21 and 22. This would put in place a time-bound limit that the medical practitioner must adhere to when carrying out the first and second assessments, when recording information in medical records at various stages, including the High Court declaration, and when recording other matters in medical records.

Our assessment suggests that in most circumstances, although it would depend on the facts of a particular case, the requirement to do an action as soon as practicable would generally amount to a requirement to do the action sooner than in 10 working days’ time. In terms of the operational effects, having a set timeline may give greater certainty to individuals seeking assistance. However, it may limit doctors’ discretion to set the timeline based around the patient’s wishes. These are matters for the Committee to weigh up and consider.

--- Later in debate ---

[Daniel Francis]

I agree. An assessment by a specialist would protect patients and give another opportunity to spot coercion—something that we all want to safeguard against.

I welcome the acceptance of amendment 20, tabled by my hon. Friend the Member for Lowestoft (Jess Asato), ensuring that doctors will be better trained to spot these issues, but that is only the start. We need the same in-depth assessment that living organ donors would get. Patients must fully understand the decision they are taking, and doctors must be convinced that they are capable of making it.

For organ donation, the NHS recommends that potential donors meet a mental health professional at an early stage, particularly in cases where people have a history of mental illness. As we have already noted, those diagnosed with terminal illnesses are likely to also have mental health issues. Dr Sarah Cox, in her oral evidence, cited a study by Professor Louis Appleby, the Government’s suicide prevention adviser. Dr Cox said:

“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]

[Sojan Joseph]

We have discussed this issue many times. Within the Bill there is a provision for clinicians to refer to a psychiatrist if in any doubt. Does the hon. Member think that having that conversation at an earlier stage would be beneficial, rather than at a later stage?

[Daniel Francis]

I agree with my hon. Friend about the number of amendments in this vein, but clearly the amendments suggested by my hon. Friend the Member for Hackney South and Shoreditch bring us into line with existing regulations. In her evidence, Dr Cox said:

“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]

It is likely, therefore, that those diagnosed with a terminal illness will experience mental distress that could affect their capacity to make a decision about an assisted death. In her written evidence, Dr Virginia Goncalves, a retired clinical psychiatrist with over 30 years of experience in the NHS, writes:

“In my consultant psychiatrist role, I have encountered many desperate and suicidal patients wanting to end their lives after struggling with longstanding mental distress, who could have easily sought the option of assisted suicide if it had been available to them! But however depressed and hopeless they felt, with a compassionate and hope filled approach from their care givers and the correct medical and psychological treatment, the vast majority recovered enough to be able to have a ‘life worth living’. In so many cases, these patients have thanked me later for not giving up on them! Not once have I heard anyone say ‘you should have let me die when I wanted to do it’.”

A meeting with a psychiatrist or other psychological specialist will protect people who may otherwise not have chosen assisted dying. I emphasise again that we already ensure that patients who will donate an organ have this assessment, so why not those seeking an assisted death? We must protect vulnerable terminally ill people from being coerced into assisted death, and psychiatrists and other specialists are best placed to spot that. That is why the assessment is included for living organ donation.

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

Sojan Joseph Excerpts

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Sojan Joseph (Ashford) (Lab)]

I support amendments 422, 468 and 423, which I think would strengthen and safeguard the Bill. However, as someone who worked in mental health for many years, I have grave concerns about amendment 201, which would restrict access to medical records. Health professionals work in environments with great confidentiality of records; I have no concern about health professionals or doctors having access to health records. Some Committee members have talked about doctors not needing to know whether a person had tonsillitis, but most medical records or GP summaries will note whether someone has had tonsillitis, along with details about vaccinations and infections. I do not think that those records will necessarily be relevant or that a doctor would look in detail at what medication they have had in that respect.

What is relevant, however, are records for people who have a mental health disorder or are vulnerable. For example, people with serious mental illnesses such as chronic treatment-resistant schizophrenia may be on treatments such as clozapine that, if stopped, will have an impact on their mental health. The treatment that they may undergo during terminal illness may have an interaction, and medication that they have been using for many years to treat their mental health condition may have to be stopped. Doctors need to know why the person wanted to choose that route, and whether it will have an impact on their mental health.

Restricting access to important medical records by the doctor who makes the decision will have an impact on very vulnerable people. As we have discussed before, people may be homeless or may not have any family members, and it will all have an impact on why they decide to seek the assisted dying route. People may feel that they are a burden to society and the system. If there is any documentation from six months or a year ago, it will be relevant for the doctor. Removing access to medical records for doctors will have an impact on people with mental disorders, intellectual disabilities and neurodevelopmental conditions, so I oppose amendment 201, although I support the other amendments.

[Naz Shah]

I will try to keep my remarks brief. I first speak to amendment 468, tabled by the hon. Member for Reigate, on the asking of the question why someone wants to have an assisted death. When I originally came to this debate, Dermot, a humanist who was also my election agent—a lovely guy—came to me and said, “Now that this Bill is going through Parliament, will you support it”? I said, “Explain it to me.” He never once mentioned the word “autonomy”. If I remember correctly, what he talked about was suffering, pain and horrible deaths, which many hon. Members have referred to. We have heard lots of examples during this Bill Committee.

My hon. Friend the Member for Luton South and South Bedfordshire said that the decision was none of a doctor’s business and that the issue was about autonomy. However, if a woman was being coerced into an assisted death, the idea that it was none of the doctor’s business would not quite wash with me. We talk about autonomy, but if someone does not have autonomy in their lives—if they are in an abusive relationship, are a victim of coercion or have a vulnerability—they might not have the choice.

When we ask a question, it is often about something else. I have experienced this myself. I am very passionate; when I am talking about things, somebody might just stop me and say, “Naz—what’s this actually about?” That is all it takes to make me stop, take a step back and a breather, and think for a deeper minute about whether the issue could actually be about something else. We do not always stop to think.

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

Sojan Joseph Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Sojan Joseph (Ashford) (Lab)]

Record keeping is a huge issue in our healthcare system. A huge number of coroners’ reviews have identified that record keeping has been an issue. By specifying only that clinicians need record a “recordable event”, we are leaving it as the responsibility of individual clinicians to decide what a recordable event is.

It is important that a good record be available to prevent future incidents and learn good practice. Leaving it open to a clinician to decide whether something is a recordable event could lead to most issues not getting recorded. For example, if a clinician has identified that there was coercion, it will be for the clinician to decide how much documentation to do. In my view, if they have identified a coercion, that should be recorded as an incident and further investigation should be done, but the Bill leaves it up to the clinician to decide. There is no standard for record keeping across the healthcare system, so a care home’s may be different from an NHS ward’s. I think it is for the Committee to look into what “recordable event” actually means.

[Stephen Kinnock]

The purpose of amendments 474 to 478 is to improve the drafting of the Bill by creating a new definition of “recordable event”. Recordable events are the events set out in clause 16(1) related to the recording of declarations and statements.

The amendments would also make consequential changes to clause 16, which refer to the occurrence of the recordable event, as per the new definition, and include reference to a report in addition to a statement or declaration. The reference to a report is consequential on the amendments already agreed by the Committee to clauses 7 and 8.

--- Later in debate ---

That is all very helpful. That is what we thought the Bill said anyway. It is not clear to me what the purpose of subsections (7) and (8) is, except that there is inherent danger in subsection (6). I am afraid that subsections (7) and (8) do not cancel that danger, because of the inherent lack of clarity—the blurring—that exists in the concept of assisting the person to ingest or otherwise self-administer.

[Sojan Joseph]

Will the hon. Gentleman clarify something? He is making a valid point, and I have been thinking about it. As a nurse who has worked in many areas, I know that a disabled person may not be able to take medication by themselves, and sometimes a nurse has to administer it with a spoon. There may be occasions on which a person’s medication comes back out and they have to do it a few times. Is that something the hon. Gentleman is concerned about—actually pushing the medication into the person?

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

Sojan Joseph Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Sir Roger. Before I speak to amendments 497 and 498, on which the Government have worked with my hon. Friend the Member for Spen Valley, let me address amendments 462 and 463.

Amendment 462 would amend clause 18 to require the co-ordinating doctor to explain to the person that they do not have to proceed and self-administer the approved substance, and that they may still cancel their declaration. Although it is not specified, it is presumed that the amendment refers to the second declaration that the person will have made. The Committee may wish to note that there is already a requirement in clause 18(4)(b) that,

“at the time the approved substance is provided”,

the co-ordinating doctor must be satisfied that the person

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

The purpose of amendment 463 is to limit what the co-ordinating doctor is permitted to do in relation to providing the person with an approved substance under clause 18. As the clause stands, subsection (6) sets out the activities that the co-ordinating doctor is permitted to carry out in respect of an approved substance provided to the person under subsection (2). It states that the co-ordinating doctor may

“(a) prepare that substance for self-administration by that person,

(b) prepare a medical device which will enable that person to self-administer the substance, and

(c) assist that person to ingest or otherwise self-administer the substance.”

Additionally, subsection (7) provides that

“the decision to self-administer the approved substance and the final act of doing so must be taken by the person to whom the substance has been provided.”

Amendment 463 would remove subsection (6)(c), which would result in the co-ordinating doctor being unable to assist the person

“to ingest or otherwise self-administer”

the approved substance. The co-ordinating doctor would still be permitted to prepare that substance for self-administration and to prepare a medical device to enable the person to self-administer the substance. This could mean that a co-ordinating doctor may not be able to provide assistance such as helping the person to sit up to help with swallowing, or explaining how the medical device for self-administering the substance works. This could result in practical difficulties in self-administration of the substance and/or place the co-ordinating doctor in a difficult position.

[Sojan Joseph (Ashford) (Lab)]

Does the Minister think that it is confusing for health professionals when we say that they can assist the patient to sit up or hold a cup of water or put the medication into their mouth? Is it not confusing for medical professionals that we are giving contradictory statements?

[Stephen Kinnock]

One of the fundamental principles of the Bill, which my hon. Friend the Member for Spen Valley has prioritised, is self-administration. It is not for me as a Minister to opine on that; it is simply there in the Bill. Once that fundamental principle is established, it is about defining what “assistance” means, compared with what “self-administration” means. As I was setting out, I think “assistance” can mean things like helping the patient to sit up; it does not mean actually administering the substance to the patient. It is about the dividing line between assistance and self-administration—hence the term “assisted dying”, I suppose, which is very different from the doctor actually administering the substance.

--- Later in debate ---

[Stephen Kinnock]

I thank my hon. Friend, who speaks with considerable clinical expertise. It is about exactly that difference between self-administration and administration. If we cleave to those two principles, that is the basis on which we will achieve the stated aim of my hon. Friend the Member for Spen Valley.

[Sojan Joseph]

Does the Minister agree that assisting a person to ingest is different from assisting a person to self-administer?

[Stephen Kinnock]

In order to ingest, there has to be self-administration. The self-administration is the precondition for ingesting the substance. That is my reading. I hope that that satisfies my hon. Friend.

--- Later in debate ---

[Danny Kruger]

I am grateful to the hon. Lady. Let me let me look that up later. I am happy to exchange data, because this is clearly something we should be trying to get right.

Nevertheless, I want to try to explain why I am suggesting that we have a problem with the drugs that are used in assisted dying and that it has been suggested we use here. Let me continue the quote from Dr Zivot:

“When one watches an execution, it’s not clear that this is happening”—

meaning that it looks like a peaceful, painless death. He continues:

“There is not much to see. Executions, like, I imagine, medical assistance in dying, are a rather bloodless event; not much can be seen outwardly. But the autopsies revealed a very disturbing and surprising finding.”

He makes the point that that is particularly disturbing, given that assisted dying often uses a paralysing drug, which induces the impression of peace and calm in the patient, when in fact something else might be going on below the surface.

To conclude my quote from Dr Zivot, he says:

“To claim that this is a death that is peaceful, well, it can be nothing else because now a person is unable to move in any way, but whether or not they have any conscious experience of what is happening is unknown…it should be clear to the Canadian public that the kind of death that they will experience…will be something other than the way it is represented. It could be exceedingly painful and more akin to drowning.”

I cannot judge whether Dr Zivot is right, but we should be very wary of any claims that there is a simple answer to the question surrounding lethal drugs. To the point made by the hon. Lady, and I think by the hon. Member for Stroud, there is no evidence in the many reports from Dignitas, which has a regime very similar to the one we are imagining here—I will certainly look at the evidence mentioned made by the hon. Lady—that contradicts the concerns raised by Dr Zivot.

[Sojan Joseph]

Does this not show that clinical documentation is very important? We debated the issue in Committee earlier, when we talked about professionals being required to complete all relevant documentation. Maybe we are missing certain data because these things are not clearly documented in other places. Should we not take from that the learning that if we go ahead with this proposal, we should have proper documentation and make it clear to the clinician what they should and should not document?

[Danny Kruger]

I entirely agree that there is great concern about the lack of evidence in countries on which we are constantly relying for evidence of why this proposal is safe. I have suggested that, from the quite limited evidence we have, that it may not be safe. The hon. Gentleman is absolutely right that if we are to proceed, we need to be extremely strict about data collection.

To the hon. Gentleman’s point about making it clear to clinicians what drugs they are permitted to use, we also need to have a proper regime of clearing and approving those drugs. In earlier clauses, we debated the imperative on the NHS, the Medicines and Healthcare products Regulatory Agency and the Department of Health to properly authorise the specifics of what drugs will be used. It is not clear at the moment what those would be, and I very much agree that we need to be clearer on that.

I finish with a reference to an earlier debate, in which it was suggested, on the basis of the Australian example, that there is no evidence of complications. The hon. Member for Stroud talked about horrible stories from the United States and Canada. He also referred to Australia, where there is apparently no evidence of problems. In fact, I understand that of the six states, only Western Australia records complications, and it does so in relation only to practitioner administration—when the doctor administers the drug—which we do not propose to do here. It does not record complications in relation to self-administration, which is what the Bill proposes. In Western Australia, complications have been reported in 4.3% of cases involving practitioner administration. Again, we are dealing with the great mystery and enigma of how death happens with assisted suicide, and it is certainly unclear what we should do about it.

--- Later in debate ---

[Sojan Joseph]

We repeatedly talk about doctors, but nurses, healthcare assistants and other professionals will definitely be involved in a hospital environment. The Bill does not talk about other professionals. Furthermore, within a hospital environment, NHS wards may be bays without individual bedrooms. Does the hon. Lady think we need to be clearer on the procedures that will happen in those areas?

[Sarah Olney]

I am grateful for the hon. Gentleman’s professional experience, which is extremely helpful. He is absolutely right. Following the point made by the hon. Member for Banbury, we cannot define the circumstances in which a patient will find themselves when this is taking place. That is why it is incumbent on us to make sure we provide very clear guidance on precisely what Parliament intends.

As Dr Rebecca Jones told us in written evidence:

“As the death may take many hours, I’m uncertain of the practicalities of”

doctors remaining with the patient

“for many doctors…have competing demands on their time.”

In written evidence, Dr Chris Ainsworth asked how this will work in cases where death takes several days, as has happened in Oregon, while Dr Trevor Stammers wrote:

“If the doctor is required to be present until the patient’s death, this may require hours of practitioners’ time to fulfil and is unlikely to be adhered to in many cases if the dying process is protracted.”

Dr Rachel Fisher said in her written evidence that for Australian doctors, who are not required to be present at the final act, each assisted death requires around 60 hours of professional time. For British doctors, we will need to add the time it takes for the self-administration to result in death. Dr Fisher also raised the real impact on doctors, writing,

“imagine the practicalities of those who must deliver it. The GP, motivated by a deep desire to preserve life and relieve suffering arrives at the home of the patient with a cocktail of powerful drugs. What if the patient has symptoms? Who will collect their child from nursery or school if the patient takes a long time to die? How will they know when to decide the death was unsuccessful? Will there be counselling for GPs observing and feeling complicit in a potentially drawn out and symptomatic death?”

Finally, Dr Paul Shaw asked in his written evidence:

“How will this service be funded? What support will be required from the NHS when things go wrong or death takes longer than expected? Will this be a 0900-1700hrs service? What will be the out of hours arrangements?”

A lot of the written evidence touches on the practicalities of a doctor being required to remain with the patient until they die. Amendment 429, in the name of the hon. Member for Bexleyheath and Crayford, seeks to clarify whether “being with the patient” requires the doctor to be physically present in the room.

--- Later in debate ---

[Sojan Joseph]

Does my hon. Friend think that 10% is a high number? Does he also think that if we informed patients about the side-effects of those medications from the beginning, the number of patients opting out would probably be higher?

--- Later in debate ---

[Dr Opher]

I almost agreed with the hon. Gentleman earlier, when he asked at one point, should we not just leave this to doctors?

One of the key things the hon. Gentleman said is that the doctor administers the drug. This is self-administered, first of all, so that is a very clear line. However, also, in a case of terminal care—this is what I am trying to get across to the Committee—we know the patient is dying, and therefore if they are becoming worse we simply do things to make them comfortable, and we do not try to revive them, because they are dying. It is important that we realise that this is a very different medical situation from normal care, and that it actually needs very different skills as a doctor. Here, a doctor is not trying to prolong life, but trying to make a death as comfortable as possible.

That is why I support the Bill—because I think it will enhance a comfortable death. I wanted to make it clear that that is normal practice now in terminal care: we do not revive a patient with a terminal diagnosis who is in terminal care, but we make them comfortable.

[Sojan Joseph]

This is a very good discussion, and with a clinician as well—maybe my hon. Friend can help here. Are we leaving the Bill to professionals to administer, who might be confused and not clear about what they should be doing? In normal current practice, when somebody has a poor prognosis and is very fragile; we use “do not resuscitate” or “do not attempt CPR” decisions. Why do we not build that into the Bill—that everyone who is going through this process should have a DNR or DNACPR in place?

[Dr Opher]

I thank my hon. Friend for his experience in a clinical setting. I would remind everybody that in the Bill we are trying to help people die in a comfortable way, and I do not feel it is the Bill’s job to define exactly how we treat nausea or abdominal obstruction and so on. What we would like to do here is ensure that a patient has a pain-free death, and a death that they are in control of.

--- Later in debate ---

[Sojan Joseph]

We had some discussion earlier about how we will potentially be assisting dying in people’s own homes—that was not previously known to us; we thought it would be always in clinical settings—so medication will be transported from where it is stored as a controlled drug, in a hospital setting, to the patient’s home. Does the hon. Gentleman think that it is important that we have clear guidance as to how we store this medication?

[Danny Kruger]

I entirely agree. The regulations need to specify not only what drugs may be approved, but, as the hon. Gentleman suggests, how they should be stored and transported. I would expect that to be part of the package of regulations under the Bill.

As I have stated, I do not accept that we are talking about healthcare here; nevertheless, we are using products that are comparable to health products. The MHRA would need to significantly adapt its work in order to identify the most effective drug to cause what we currently perceive as harm—namely, the death of a patient. I recognise that that would be a significant change of remit and work for the MHRA, but we need to do it. One of the reasons that we need regulation of approved substances is to help ensure that falsified versions of the drug—drugs that do not have a licence for use in assisted dying—cannot enter the market. Such drugs may not be effective and could cause distress to those ending their lives and their families. I would be grateful if the Minister could clarify whether, in his view, clause 20 is sufficient to establish the necessary regulatory regime, or whether further legislation will be needed.

We had evidence from Greg Lawton, and other pharmacists, who wrote to the Committee to suggest that the approved substances would not legally come within the definition of a “medicinal product”, so medicines law, the protections associated with medicines and the MHRA licensing process might not apply. If that is the case, what do we do about it? We need a new licensing regime to ensure that the MHRA is able to properly regulate the substances, or, potentially, another regulatory agency would need to be established to do the job.

The Committee needs to make sure that there is a process that applies to approved substances used for assisted dying. It is not necessarily the case that a product licensed for treating a medical condition could not be used to bring about death—it is not the case that we cannot use any drug that is currently used for genuine health treatment—but it would not be being used as a medicine, so medicines law may not apply to its use for that purpose. There is an ambiguity, and I would be grateful for clarity on it.

The amendments that I am supporting would ensure that the MHRA had approved the drug for the specific purpose of ending someone’s life, and that there was scientific consensus that the drug would be effective for that purpose. The MHRA, in the marketing authorisation for the approved substance, would define the dosage of the drug required to bring about death. It would also ensure that specific considerations and warnings were placed in the product licence.

For example, some patients have allergies to certain drugs. If they decide to end their own life, that should be brought about as a result of the effect of the drug, not an unintended allergic reaction to it. Some patients would not be able to take drugs orally and might need to have the drug administered through a tube into the stomach, so different formulations would need to be available. Some drugs may need to be administered by injection. Patients may be unable to do the injection themselves, as we have discussed. Even if the patient is physically capable, injection techniques require proper training, and that needs to be considered when licensing drugs for assisted dying if the patient is responsible for self-administration.

There will be further considerations when deciding what drugs can be used. Patients will have a right to know what to expect. If they take the drug orally, how long will they have to wait before they die? Will they lose consciousness first? If so, how long will that take? Could there be some side effects or reactions after taking the drug, such as seizures or choking, that the family or carers will have to deal with? Can the drug be taken at home—that relates to the point that the hon. Member for Ashford made—or must it be used in a clinical setting? We have suggested that it could be used at home, so questions about transportation arise. Is a combination of drugs required? If so, in what order should they be taken? What happens if the patient passes out before taking the entire concoction of drugs? Has the drug formulation been optimised for the purpose of assisted dying, so that it reaches maximum blood levels as quickly as possible?

All these sorts of questions are appropriate for medical regulators. The MHRA could ensure that the patient information leaflet, and the warnings associated with it, given with the drug when it is prescribed prompt doctors to think about what drugs are most suitable for the patient and to provide information to the patient about what to expect.

Parliament must have oversight. It must bear responsibility for the kinds of deaths that it approves. Both Houses of Parliament should approve the statutory instrument. To inform that decision, the Secretary of State should provide all relevant information on the likely time to death, and on complications and side effects. When the state is creating a regime that will end lives, there must be maximum transparency and accountability, yet the Bill provides that this will be done by a negative statutory instrument. In other words, Parliament will get a say on the regulations only if the Leader of the Opposition prays against them—that is the process for a negative SI. That is the only circumstance under which the Government would make time for a debate and a vote on a negative SI. Given that this is an issue of conscience, I find it inconceivable that the Leader of the Opposition would want to take a position on it and so pray against it to trigger a proper debate. I think it is highly likely that Parliament would never get a say on this crucial issue because of the use of the negative procedure.

That situation has been recognised repeatedly as being unacceptable. When Lord Falconer introduced his Assisted Dying Bill to the House of Lords in 2014, it too provided for a negative SI power on this matter. The highly respected House of Lords Delegated Powers and Regulatory Reform Committee—we do not have an equivalent Committee in the Commons, but it sits over Parliament—said that it did not consider either the power or the procedure in the Falconer Bill to be appropriate, yet that is the procedure that we are being presented with here.

In 2021, when Baroness Meacher introduced her Assisted Dying Bill to the House of Lords, the Delegated Powers and Regulatory Reform Committee again issued a report, in which it said:

“In the interests of clarity and transparency on such important issues of public policy, the matters that are in due course to be dealt with under clause 4(7) by negative regulations should in our view be spelled out in detail on the face of the Bill from the outset. Accordingly, the Bill should contain a definitive list of medicines, and details of the manner and conditions under which such medicines are to be dispensed, stored, transported, used and destroyed. The power to amend such matters should be a matter for regulations subject to the affirmative procedure.”

We then come to Lord Falconer’s 2024 Assisted Dying for Terminally Ill Adults Bill, which he withdrew following the introduction of this Bill by the hon. Member for Spen Valley. That Bill in part took on that feedback from the Lords Committee. Although it did not provide a list of medicines, it did at least provide that the power to specify the drugs would be through the affirmative procedure.

The Hansard Society, which is non-partisan and neutral on assisted dying, has issued a critical report on this power. It says:

“MPs may wish to enquire why Kim Leadbeater has chosen not to adopt the scrutiny procedure set out in the 2024 bill, but has preferred that proposed in the 2014 and 2021 incarnations of the bill, despite the advice to the contrary of the Delegated Powers Committee.”

I would be grateful to learn from the hon. Lady why she has chosen this procedure.

It might be objected that the list that I am requesting might need to be modified quickly and that the affirmative procedure—having a parliamentary vote—would be an obstacle to doing that. The Hansard Society anticipated that objection. It said that

“this could be addressed by making provision for the use of the ‘made affirmative’ procedure in urgent cases where the Secretary of State wishes to remove a substance from the approved list and is of the opinion that it is necessary to do so immediately in order to prevent adverse medical events or failed assisted deaths. This would mean Ministers could act expeditiously but Parliament would have to debate and approve – albeit retrospectively – the change in the list. Whilst not perfect it would provide more opportunity for oversight than that offered by the negative scrutiny procedure.”

It seems to me that there is no justification for this vital matter to be regulated under the negative procedure. Too much power and responsibility is being given to Ministers subsequent to the passage of the Bill— if that is what happens. My amendment 467 would ensure that Parliament has a meaningful say, through the affirmative procedure, and that a report is published as part of that process setting out the expected efficacy of the drugs that will be used. I hope that the Committee will support it.