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 (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 (Ninth sitting)

Sojan Joseph Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Naz Shah]

This amendment is an attempt to have that conversation and to strengthen the concepts that we are debating. That is the whole point of the Committee. As my hon. Friend the Member for Spen Valley said, there is no point in having witnesses if we do not listen to what they say. This is what the witnesses said.

My hon. Friend the Member for Ipswich makes a valid point. He asks whether I would, by that definition, support this amendment. I support it because it has led to a debate that we have had all morning, and that we are carrying on into the afternoon. As it is, the Bill does not give me confidence, whether it is due to the use of the Mental Capacity Act or the definition of “ability”. I feel that it needs to go much further, perhaps through the Secretary of State tabling another amendment at a later point.

[Sojan Joseph (Ashford) (Lab)]

We heard many pieces of oral evidence from expert psychiatrists, including from the Royal College of Psychiatrists, saying that the Mental Capacity Act is not fit for the Bill. Even if we use the Act, many conditions such as depression or delirium —or the effects of some medication—can impact on people’s decision making. It is worrying when someone like Dr Rachel Clarke, who has extensive experience in the Mental Capacity Act and has been training medical students and nurses, says of those mental capacity assessments that

“it is often the case that they are…poorly conducted.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]

Would my hon. Friend agree that rather than use the Mental Capacity Act, the “ability” amendment tabled by the hon. Member for Richmond Park would be more suitable and make the Bill safer?

[Naz Shah]

I know that my hon. Friend comes from a mental health background and has worked as a professional in this area. I absolutely agree that we need to strengthen the Bill, which is why I will support the amendment. I feel that we must strengthen it because the Secretary of State can make some interventions.

--- Later in debate ---

[Sojan Joseph]

On a point of clarification, under the Mental Capacity Act, if somebody decided to stop eating and drinking, we would let them do it until they became unconscious, and then their best interests would come into effect. We would take them into treatment if there were a risk to their life. Would my hon. Friend agree that that needs to be clarified?

[Naz Shah]

This whole conversation has taught me that we are not on top of the Mental Capacity Act or the conversation about ability, which is why it is so important to have these conversations, even if it is just to try to get to the nub of the issue. Amendments that I will speak to later will clarify my position, but from the evidence I have heard, I will be supporting the amendment tabled by the hon. Member for Richmond Park. That is because the test needs to be much higher than the Mental Capacity Act on its own when it concerns the issue of choosing assisted dying. For that reason, I will support the amendment.

--- Later in debate ---

[Naz Shah]

The hon. Gentleman clearly has more recent experience of prisons than I have—thankfully. In closing, I will be supporting his amendments to protect people who are vulnerable in prison and people who are homeless.

[Sojan Joseph]

I want to contribute to this discussion based on my experience as a mental health nurse. I worked in mental health services for 22 years, including managing a medium secure forensic unit. I have worked with many homeless people and people who were detained under the Mental Health Act by the criminal justice system in those medium secure units and who had been involved in criminal activities.

With my experience, I can categorically say that that group of people is very vulnerable. As the hon. Member for East Wiltshire said, self-harming and suicidal tendencies are very high among that group. As part of the risk assessments that we carry out in the mental health system, one of the questions is whether they are homeless. That question is asked to identify that vulnerability.

These amendments bring up the importance of a psychosocial assessment, which was highlighted in many pieces of our oral evidence. If we are looking to bring more safeguards into this Bill, that is something we should consider to safeguard this group of people.

I want to make one more point about what the right hon. Member for North West Hampshire said: not all homeless people are homeless in the same way; some people choose to sleep rough. I am not clear whether, if somebody is sleeping rough and is diagnosed with a terminal illness, we are looking to bring them back into an NHS bed to assist them to die. I do not know whether there is a provision to identify how we would manage those sorts of situations.

[Kit Malthouse]

I was not necessarily saying what the hon. Member said that I said—that all homeless people are the same. However, it is the case that, for rough sleepers in particular, a number of charities, such as St Mungo’s, have had to develop on-street palliative care services for the rough sleepers who sadly do contract terminal diseases or are reaching the end of their lives. Very often, part of that service is to try to encourage them to come into some kind of institutional environment, such as a hospital, where their healthcare can be better served. It is a particular difficulty with that group, and there is a high incidence of mental health problems among the street homeless—not homeless people generally, but the street homeless—but that, in my view, would be caught by the general assessment that takes place.

In fact, the hon. Member may be interested to know that there is quite a lot of on-street mental health assessment taking place for people. People who are living on the street develop all sorts of disorders—indeed, there are often people with quite significant mental health problems on the street—and they are dealt with as closely as possible to the front end.

Therefore, it would not be beyond the capability of the state to make assessments about individuals that are appropriate to the context. I am trying to stress the point that we need to see the person as an individual, as well as within their context. With a blanket ban on particular groups, the human right that I was referring to is denied—it denies them the right to be seen as an individual and assessed as an individual, which is what we do in every other service that we provide to them.

[Sojan Joseph]

I thank the right hon. Member for that intervention. To clarify, not all patients who are diagnosed as terminally ill are necessarily bedridden. They may be capable of carrying out their day-to-day activities as normal, even though they have been diagnosed with a terminal illness and have been given a prognosis of six months. They may still be walking around. Not everybody needs palliative care, in fact.

My question was: if somebody who is a rough sleeper is diagnosed with a terminal illness and they want help with assisted dying, will we make provision to bring them back into an NHS bed to facilitate their dying? It would be great to have that clarification. I support the amendment, as I have seen many highly vulnerable people who would be more likely to choose the path to end their life if they were given the option.

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 (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 (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.

Oral Answers to Questions

Sojan Joseph Excerpts

Tuesday 5th November 2024 Commons Chamber

The Secretary of State was asked—

[Sojan Joseph (Ashford) (Lab)]

1. What steps her Department is taking to reduce the backlog of Crown court cases.

[Sir Ashley Fox (Bridgwater) (Con)]

10. What steps she is taking to reduce the backlog of Crown court cases.

[The Minister of State, Ministry of Justice (Heidi Alexander)]

We are funding 106,500 Crown court sitting days this financial year—500 days more than the previous Government originally agreed. To reduce the number of cases that end up at the Crown court, we are also extending magistrates’ sentencing powers to up to 12 months for an individual offence.

[Sojan Joseph]

It is important that victims of crime have the swift access to justice that they deserve, so I welcome the extra funding from this Government that will lead to more than 106,000 sitting days in Crown courts this financial year. That includes nearly 3,000 in the Crown courts in Kent. Does the Minister agree that dealing with the court backlog left by the Conservatives is essential to make sure that offenders are quickly brought to justice and faith is restored in the criminal justice system?

[Heidi Alexander]

I agree. This Government inherited a record and rising Crown court backlog. We walked into a criminal justice system on the brink of collapse, with our prisons overflowing and our courts buckling under the weight of demand. While we cannot fix this mess overnight, we will do everything we can to ensure swift justice for victims and to restore faith in the entire system.