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

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Department: Ministry of Justice

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

Juliet Campbell Excerpts
Tom Gordon Portrait Tom Gordon
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That was a really comprehensive answer. I think the key point that you touched on is the multidisciplinary approach.

Juliet Campbell Portrait Juliet Campbell (Broxtowe) (Lab)
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Q Thank you both very much for being here today. Throughout this whole discussion, for many months, there has been a lot of talk about palliative care and pain management, which can lead patients to come to a decision or to consider assisted dying as an option. If a doctor has suggested to a patient that assisted dying is an option, or a patient has said that they are considering assisted dying, do you think that they should be referred to another clinician? Or do you think that there should be an independent organisation—a non-clinical setting—where a patient can go to have further discussions before taking the assisted dying route?

Professor Ranger: I think there is something really important about having a big difference in the beginning with regard to palliative care and assisted dying, and pain management. It is essential that those two things are slightly separated, because it would be heartbreaking to think that pain management was the primary reason that someone wanted to be assisted to die. We should be able to control and support someone’s symptoms and pain.

I think the primary thing with regard to being referred to another organisation is autonomy. I absolutely agree with what was said earlier: you would want anyone who is considering assisted dying to be slightly separated out of their normal clinical pathway, so it is not part of mainstream care for someone in a hospital or an organisation. There is something really important about separating that out, both in the discussions around the decision making and in any care involved in assisting them to die. I think those two things do need to be separated.

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

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

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

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

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

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

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Department: Ministry of Justice

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

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Juliet Campbell Portrait Juliet Campbell (Broxtowe) (Lab)
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Q I have a question for James Sanderson and one for Dr Clarke. They are quite similar, but I will refer to things you have said. James, you said:

“Sadly, only half the people who need palliative care receive it.”

In your opinion, who are the people who receive palliative, and who does do not?

My question to Dr Clarke is similar. You have talked about the population being

“carved up into two groups…those who deserve to live and those are expendable”.

Could you expand on that quote and the two groups you referred to, as well as the impact that has on their treatment and care?

James Sanderson: You draw a really important point about not just the provision and totality of palliative care across the country but the inequity of access. Unfortunately, we find that the diversity of people who are accessing care in hospices across the country is less than those who are dying in hospital—43% of people currently die in hospital.

One of the things we really need to do is move to a new ecosystem of palliative care that looks at supporting people in different settings. We need specialist provision in hospices to support people with significant needs, but increasingly hospices are reaching out beyond their walls into the community, and 80% of Sue Ryder’s work is in people’s own homes. People tell us that they want to die at home, so supporting people in their own homes enables us to access more diverse communities and get to people in their own setting.

Increasingly, one of the things we feel is necessary is the provision of support inside hospital. Alongside wards, we would bring support to that 43% of people who are currently dying in hospital, to ensure there is equality of access in all places, both in in-patient settings and in the community. You draw a really important point that we have to look at the totality of provision and ensure that, when someone is offered palliative care—the Bill talks about that provision being available—there is universal access, in terms of the type of palliative care available and the access for everybody in society.

Dr Clarke: My comment refers to the fact that there is an immense gulf between the theory of the NHS being a cradle-to-grave service—or a service that cares for us at the end of life as it does at the start—and the reality. The reality that I see every day at work in my hospital is patients coming into the emergency department from the community sometimes in utter, abject misery, in agony, with a lack of dignity. They have been forgotten completely. They are not getting healthcare or social care, and no one cares about them.

Even in the hospital, patients who have a terminal diagnosis are sometimes cast out into the corners of the hospital. There are hospitals, and mine is one currently, where we do not even have a 24/7 palliative care service face to face. Every night in my hospital, and every weekend from Friday to Monday, you cannot see a palliative care nurse or doctor, despite the fact that for a number of years that has been an NHS standard. That is an absolute disgrace and it shows how little people who are dying are truly cared for in a civilised society.

It does not necessarily have anything to do with assisted dying, except that if we do not address that simultaneously, some of those people will “choose” to end their life, because we as a society do not care about them enough to give them the care that might make life worth living. Surely that is a travesty for Britain.

Neil Shastri-Hurst Portrait Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
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Q I have a question for Dr Clarke and Dr Cox about the registration of deaths, which is dealt with in clause 29. Do you feel that the provisions set out in the clause are sufficient? If not, what further bolstering would provide the oversight needed to ensure that the processes and procedures are followed correctly?

Dr Cox: My understanding of the plan is that in the Bill—forgive me, but I am sketchy on this—the aim is for the registration to be as a natural death. It would not be referred to the coroner, and “assisted dying” would appear on the death certificate.

I am also a medical examiner. My concern is that, as a medical examiner, I am obliged by law to scrutinise all deaths to ensure that a referral to the coroner is not required and to identify any learnings. What concerns me in that role is whether enough recording is happening around decision making and the process to do my job properly. With my medical examiner hat on, do I know what happened? I do not see anything written down in the Bill about the records that are to be kept. What happened when the patient took the substance? What happened afterwards? Were any actions taken in the meantime? That is not so much something I have thought about a lot with my palliative care consultant hat on, but as a medical examiner it concerns me.

Dr Clarke: For the sake of time, I do not have anything to add. I completely agree with that.

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

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Department: Department of Health and Social Care

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

Juliet Campbell Excerpts
Rachel Hopkins Portrait Rachel Hopkins
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You have given clarity. Thank you.

Juliet Campbell Portrait Juliet Campbell (Broxtowe) (Lab)
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Q My question is for Professor Shakespeare and Dr Griffiths. Clause 4 of the Bill offers the opportunity for clinicians to instigate the discussion on assisted dying. Could you both tell me your view on that, please?

Professor Shakespeare: It is natural and right that somebody should discuss their wishes with a doctor who supports and treats them. I do not think there is a problem there. Marie’s suggestion that there should be a wider body to look at this is very relevant. At the moment, doctors refer women for abortions, and that does not stop them also supporting pregnant women. I do not think that women would distrust their doctor because they are sometimes involved, at some point, with an abortion decision. That is quite obvious. As my colleague Yogi Amin said, the Bill covers what the terminal illness is, and why we should support people to voluntarily exercise their choices. Lots of doctors will not be in favour of this, but they will be clinically professional and they will discuss with the person. I do not have a concern about that. You are more likely to be kept alive against your will than you are to end your life under this Act.

Dr Griffiths: My first point is that, for me, the Bill raises concerns because it relies on doctors’ interpretations of prognosis. If a doctor assumes that you have six months left to live, and is therefore going to start having a conversation with you about the possibility of assisted suicide, that draws into question how we allow assumptions to be made about whether an individual has six months left to live. That is particularly the case given that we have evidence that shows that, with certain interventions or mishaps surrounding prognosis, individuals can live for months, years and decades longer. The idea of bringing in the conversation from the point of view of the medical practitioner could, arguably, accelerate one’s death—if you take into account that their idea of prognosis might be flawed.

It also, I think, raises problems, because we know that many individuals with health conditions and impairments—irrespective of whether we want to create this false line between disabled people and people with terminal illness—do not have access to advocacy or representation in these kinds of processes. Having a conversation where there is extreme credibility and validity that rests on the medical practitioner could exacerbate issues around coercion.

We could take a moment of reflection. When we were going through the pandemic, the Parliamentary and Health Service Ombudsman highlighted how medical practitioners could think about “do not attempt resuscitation” orders and how they were utilised in the disabled people’s community. That has parallels with the issue we have here, where medical practitioners will be making assumptions about whether conversations or applications should be made.

Yogi Amin: Can I just raise one point on representation? I point Members to paragraph 10 in my written submission, which tries to make the important point that if we are involving courts, individuals need access to justice. They need access to advice, and that means legal aid. I point in that paragraph to the provision of non-means-tested legal aid, just like in the case of parents of children and the withdrawal of life-sustaining treatment. Those current rules are in place for parents, and a similar arrangement could be put in place for individuals who are brought before the court in this matter.

Liz Saville Roberts Portrait Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
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Q I have a question for Mr Amin. England and Wales is a single jurisdiction, but health is devolved and we have been discussing an amendment to clause 12 in relation to the court of a multidisciplinary arrangement, as opposed to the High Court. What are the implications for the Committee to understand in how this plays out, with health being devolved but the jurisdiction being single?

Yogi Amin: If the legal panel is not a High Court judge, but it is a multidisciplinary panel, then it just draws upon the people in the local areas. The Court of Protection operates in England and Wales and the judges apply the law the same way. That is what the panel would do in this case. Are you more concerned about the make-up of the panel or how they apply it?

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

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Department: Ministry of Justice

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

Juliet Campbell Excerpts
Liz Saville Roberts Portrait Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
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Q There was one thing I wanted to ask about, but it led me to another question, which is to Dr Naomi Richards. It seems that much of what we are discussing assumes that being patient-centric is intrinsic and runs day to day through medical culture. Is that actually the case in your experience? If not, is there something within the culture that needs to change to become more patient-centric in order to enable autonomy?

Dr Richards: I think you probably know the answer is that it is not patient-centric. In Marie Curie’s “Better End of Life Report 2024”, which was a representational survey with bereaved relatives, a third of people did not think that their relative even knew that they were dying. We still have a long way to go in communicating to people that they are in a terminal phase, so that they can find whatever residual value is in that period of time for themselves and their family. So, no, definitely not, but that is what we are striving for. I am sure that that is what all healthcare professionals are striving for.

In terms of assisted dying, it would be so explicit. It is categorically different from other kinds of conversations that are much more open-ended, like goals of care conversations at end of life. This is really quite specific, to the extent that you can actually give doctors a form of words to use, because their request for this procedure needs to be so categorical and there needs to be no ambiguity around that.

In a way, this conversation about assisted dying is actually different because it is very up front, it has to be very categorical and it has to be documented. In that sense, it is extremely patient-centric, and there would be no using euphemisms, which happens in end-of-life care, when what doctors think they have told their patients they do not hear. They have heard something else, because euphemisms change according to—well, you do not even have to go so far as to talk about different communities or cultural groups; they change from one person to another. I think this would require quite specific language. It would bring things into a much less ambiguous kind of territory.

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

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

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

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

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

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

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

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

Professor Preston: I can take that if you want.

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

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Department: Ministry of Justice

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

Juliet Campbell Excerpts
Jake Richards Portrait Jake Richards
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My reading of the Bill—we are dealing with clause 1, but we will get to clause 24—is that clause 24(3) says:

“In the Suicide Act 1961, after section 2A (acts capable of encouraging or assisting suicide) insert”,

followed by the provisions in new section 2AA.

Juliet Campbell Portrait Juliet Campbell (Broxtowe) (Lab)
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I have a question for the promoter of the Bill, my hon. Friend the Member for Spen Valley. We are having a lengthy conversation about coercion and pressure, and whether those two words are a catch-all for things that can be much more subtle and nuanced. That is the point of the amendment, and it is the point that I will make when I speak to the amendment I have tabled. Clause 26 suddenly introduces new language, with the word “dishonesty”, which brings in another type of coercion and pressure. Could we rethink the wording of clause 1(2)(b), which refers to a person who

“has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured”?

The words “coerced” and “pressured” are insufficient to cover the safeguards that we are asking for. They are not a catch-all. We are asking for something much more nuanced, and for other words to be added, just as the word “dishonesty” appears in clause 26.

Jake Richards Portrait Jake Richards
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I did not draft the legislation, but my understanding is that the reason why the word “dishonesty” appears in clause 26—I do not know whether the Minister wants to comment on this—is that when there is a criminal offence, there needs to be a mens rea. The person who has committed the offence needs to have been intentional or reckless in doing so. As I say, I was a criminal barrister only very briefly; I am sure my law tutors are shaking their heads.

--- Later in debate ---
Jake Richards Portrait Jake Richards
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On the first point, in fairness, the hon. Member for Reigate was talking about a clause that we are going to consider and the link between two different criminal offences in the 1961 Act and clause 26 of the Bill.

On the second point, the Bill—to coin a political phrase—needs to be fit for the future. The language used in legislation over the last decade when we are considering coercion—I use that word automatically because that is the language we use now—is much more appropriate than “encouragement”, which is slightly archaic, to be honest. Perhaps we need to look at the Suicide Act as well—although not in this parliamentary term; that is for the second term. [Laughter.] I have nothing further to add.

Juliet Campbell Portrait Juliet Campbell
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I rise to speak to amendments 113 to 115 and 118 to 121, which would require steps to be taken to establish that a person seeking assistance has not been manipulated by another person.

The amendments would require the co-ordinating doctor to ascertain whether, in their opinion, the person has been manipulated, and would account for additional ways that a person can be influenced by another person into choosing an assisted death. Pressure and coercion may leave an individual feeling that they have no choice but to take that path; however, manipulation can make the person think that they made the choice themselves. Coercion is an overt and clear means of controlling someone, whereas manipulation is a hidden, psychological and deceptive means of control.

--- Later in debate ---
Simon Opher Portrait Dr Opher
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We are all in this together. We all want the safest Bill possible, so we should defer to the legal side to form the safest language. I am not a specialist on this legal subject but we all want the same thing and we are arguing about words on which we perhaps just need to take advice, to make the safest possible Bill.

Naz Shah Portrait Naz Shah
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In response to the intervention of my hon. Friend, we are here to make the Bill as safe as possible, but this is a new thing. When the Bill returns to the House, I have to make a decision on whether to support a new Bill that is of such huge magnitude to our communities and the whole country. This Committee is the only process available to us, and words matter.

I support the amendment tabled by my hon. Friend the Member for Broxtowe. The concept of manipulation, as she set out, is very important. I come back to the issue of abuse, particularly in respect of women. I have never heard the phrase “Fifty Shades of Manipulation”—that is an interesting one—but this happens every day, across society. I encourage people to talk about these words. We, as parliamentarians, benefit from that: we are better people for understanding other experiences, because different people bring different experiences to this conversation. I have certainly learned a lot, and it strengthens the House itself when we speak from positions that we have debated. That is the whole purpose of us being here. I am not concerned by talking about adding language—I hope my hon. Friend the Member for Broxtowe shares my view—because that is point of us being here in the first place.

Juliet Campbell Portrait Juliet Campbell
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To reply to my hon. Friend the Member for Stroud, I understand that the writers, promoter and sponsors of the Bill want it to be as simple as possible. The thought is that if we make it as simple as possible, there is less room for confusion and misinterpretation, but there are times when we can make things so simple that we allow far too much interpretation. Words such as those that the hon. Member for Reigate wants to be put into the Bill are really important. Manipulation is really important. Coercion and pressure are not measures of every type of controlling behaviour that happens to individuals.

Kim Leadbeater Portrait Kim Leadbeater
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I am very supportive of the sentiment behind my hon. Friend’s amendments, and she is making some really good points. Again, the question is about the simplicity of the language that goes in the Bill. The CPS guidelines on coercion and coercive control includes behaviour that is

“highly manipulative such as: ‘love bombing’ where the suspect will intermittently do what appears to be loving acts, seeking to present these as interrupting or negating the course of conduct”,

so there is language in there about manipulation. I hope that provides some reassurance that manipulation is seen to be part of the broader concepts of coercion and coercive control in the eyes of the law.

Juliet Campbell Portrait Juliet Campbell
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I thank my hon. Friend for looking that up so swiftly. I still think that those additional words need to be included in the Bill. “Coercion” and “pressure” are used as a catch-all for manipulation, but the Bill does not allow people who are using it in their everyday life—doctors, clinicians, nurses and social workers—to understand that.

Naz Shah Portrait Naz Shah
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I thank my hon. Friend for being so generous with her time. To come back to the CPS’s terminology, does she agree that, in an ideal situation, the Bill would be so safe that we would not need to look at that CPS definition? The Bill would be so tightly defined that nobody could be prosecuted for coercing somebody into taking the option of assisted death.

Juliet Campbell Portrait Juliet Campbell
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I absolutely agree that we do not want people not to understand what the Bill allows them to do or not do. We spoke earlier about making the Bill simple enough for professionals to understand so that they know how to deal with particular instances, but it is not here to make life easy for professionals; it is here to ensure that anyone who is vulnerable—anyone who has six months to live, or for whatever other reason—is protected.

A continuous theme of our debates and all our conversations is that we must make safeguarding as tight as possible so that people are protected. I believe it is not too much to ask to include those additional words to ensure that the wording is as tight as possible and protects the people who need our protection every single day.

Danny Kruger Portrait Danny Kruger
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It is a pleasure to follow the hon. Lady. May I say how much I agree with what she has been saying and the purpose of her amendments, which I will be supporting if we get the chance, as I will the amendments in the name of my hon. Friend the Member for Reigate?

I do not want to repeat what I said yesterday, but my general point is that we make decisions in a context. We are directly influenced by the people around us. I want to highlight the very powerful phrase that my hon. Friend used. She said that love can shroud decision making, and the influence and pressure that is applied to us can be shrouded in love.

Professor House, who gave evidence to us, talked about the enmeshment of people’s decision making with the influence of their loved ones and people around them. The fact is—hon. Members have made this point—that power dynamics in families are complicated, and where there is an imbalance of power, there is risk. The Bill implicitly acknowledges that through the safeguards that it attempts to create, but I do not think they are strong enough.

I know that my right hon. Friend the Member for North West Hampshire is concerned that strengthening the Bill in this way will create an opposite risk, which is that a family member who was behaving perfectly properly could somehow be dragged into a prosecution, or that the application would be denied on the basis of a reasonable conversation that had taken place between loved ones—“My darling, do you think I should do this?” It is a lovely fictional conversation, a sweet exchange between a loving couple, but saying to somebody that you agree with the decision they have made and that you would support it, or that you are content with it or understand it, is not the same as undue influence—it is not even the same as encouragement. It is similar to the debate we will be having in due course about the role of the doctor making an overt suggestion of an assisted death, rather than consenting to a suggestion that has been made by the patient.

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

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

Juliet Campbell Excerpts
Neil Shastri-Hurst Portrait Dr Shastri-Hurst
- Hansard - - - Excerpts

I will try to make some progress. I want to move on to the other point I want to address, which is around bogging down the whole process with layer upon layer of bureaucracy. We are talking about a relatively small group of patients who are in the last six months of life and are then battling against the system that is meant to be helping them. If we put in layer upon layer and hurdle upon hurdle, it will become a much more difficult system for people to navigate. That does not mean that it would be a less robust system, but it would be a more difficult system. We are trying to make life easier, not harder, for those patients. This comes back to the central point that Professor Whitty made in his evidence about overcomplicating Bills: we overcomplicate Bills out of good intentions, but rarely make the safeguards more robust—in truth, we make them less safe.

Juliet Campbell Portrait Juliet Campbell (Broxtowe) (Lab)
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Will the hon. Gentleman give way?

Neil Shastri-Hurst Portrait Dr Shastri-Hurst
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Go on—I am feeling generous.

Juliet Campbell Portrait Juliet Campbell
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I want to go back to the point about making the Bill more complicated by putting layer upon layer on it. My hon. Friend the Member for Bradford West spoke about health inequalities and how not everyone is given the same advice to the same level. If we were to introduce a palliative care specialist we would guarantee that everybody was given the same advice and information. We could therefore help reduce the health inequalities and inequalities of access to information that we know exist in our healthcare system.

Neil Shastri-Hurst Portrait Dr Shastri-Hurst
- Hansard - - - Excerpts

The hon. Member makes a valid point. The reality is that, regardless of specialty title, there will be individuals who are better placed to have certain conversations and discuss certain issues than others. I look back at my own clinical practice: some colleagues would have had a better bedside manner than others, for example. I do not think this comes down to the name of the specialty; it comes down to the underpinning skills and knowledge. That is the point I am trying to make.

We can get bogged down by saying, “Everybody has to see a palliative care specialist”. Of course, that is open to people: if they wish to have a referral to a palliative care specialist, they can see one. However, as the hon. Member for Stroud said, some people may not want that. We cannot be removing the autonomy of patients when their decision-making process is that they choose not to engage with that. They may want to speak to their GP because they have had a relationship with them over 30 or 40 years and have the patient-doctor relationship that is so important when dealing with these important discussions. Perhaps they would feel less comfortable having that discussion with a clinician they had just met for the very first time.

Terminally Ill Adults (End of Life) Bill (Thirteenth sitting) Debate

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

Juliet Campbell Excerpts
Danny Kruger Portrait Danny Kruger
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I am grateful, Mr Dowd. I recognise the force of what the hon. Member for Penistone and Stocksbridge is saying. To be clear, the amendments that I am supporting would not deny disabled people any of the other rights that are being awarded in the Bill. She is absolutely right that a disabled person with a terminal illness would qualify just as much as someone who was not disabled. That is absolutely right.

The purpose of the amendment is to ensure that people whose illness is a direct consequence of a mental disorder in particular would not be eligible. The reference to disability is because of the confusion, which I expect the hon. Member for Spen Valley recognises in current law and guidance, about where the distinction between disability and terminal illness lies. That is our concern. The purpose of the amendment is to ensure that people would not be deemed as eligible for an assisted death in consequence of disability or mental illness. I know that is what the hon. Lady is trying to do with the amendment, and with the clause that it amends, so we are on the same page. Our concern is that, by including the words “For the avoidance of doubt” and the word “only”, we will be leaving quite a large loophole, through which, I am afraid to say, some vulnerable people might fall.

I look forward to the Division on the amendments. We have not been able to discuss them all in close detail, but I am grateful to Members for the debate that we have had.

Amendment 399 agreed to.

Juliet Campbell Portrait Juliet Campbell (Broxtowe) (Lab)
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I beg to move amendment 123, in clause 2, page 1, line 23, leave out “an inevitably” and insert “a typically”.

This amendment changes the definition of what it is to be terminally ill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment.

None Portrait The Chair
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With this it will be convenient to discuss the following:

Amendment 9, in clause 2, page 1, line 24, after “reversed” insert

“or the progress controlled or substantially slowed”.

This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.

Amendment 48, in clause 2, page 2, line 2, leave out

“can reasonably be expected within 6 months”

and insert

“is expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”.

Amendment 282, in clause 2, page 2, line 2, leave out

“reasonably be expected within 6 months”

and insert

“be expected with reasonable certainty within one month, even if the person were to undergo all recommended treatment.”

This amendment would restrict the scope of assisted dying to people who, with reasonable certainty, would die within one month, even if they were to undergo all recommended treatment.

Amendment 51, in clause 2, page 2, line 2, leave out from “expected” to end.

This amendment would remove the six-month time requirement for a person to be eligible to request assistance under the Act.

Amendment 234, in clause 2, page 2, line 2, leave out “within 6 months” and insert—

“(i) in the case of a neurodegenerative illness, disease, or medical condition, within 12 months; or

(ii) in the case of any other illness, disease, or medical condition, within 6 months.”

This amendment changes the definition of a terminal illness for the purposes of the Act to include neurodegenerative illnesses, diseases or medical conditions where a person’s death in consequence of such an illness can reasonably be expected within 12 months.

Amendment 10, in clause 2, page 2, line 6, at end insert

“, providing the treatment does not alter the overall prognosis of the condition.”

This amendment, which is linked to Amendment 9, would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.

Amendment 402, in clause 2, page 2, line 6, at end insert—

“(2) A person who would not otherwise meet the requirements of subsection (1), shall not be considered to meet those requirements as a result of stopping eating or drinking.”

This amendment means that someone who is not terminally ill within the meaning of subsection (1) cannot bring themselves within that definition by stopping eating or drinking or both.

Juliet Campbell Portrait Juliet Campbell
- Hansard - -

The amendment would change the definition of what it is to be terminally ill, from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment.

The limits of medicine, and where they manifest in our healthcare system, have been repeatedly discussed and have come up in oral and written evidence. The Bill’s supporters have frequently used the argument that our current medical care is limited to highlight the benefits of assisted dying, by stating that even with the best care available, not everyone can be prevented from experiencing significant suffering as their life comes to an end. However, such an understanding of the limits of medicine is not consistently applied in the Bill. The truth, as is repeatedly corroborated in the written evidence, is that in many cases we simply cannot reasonably know how long a person could survive.

Witnesses have explained that predicting whether someone is inevitably terminal is often not a certainty. Even when a disease is considered advanced or at the end stage, there are variables—such as an individual’s response to a treatment, access to care, new clinical trials, medical intervention, or a person’s overall resistance —that can influence the outcome. When practising medicine, doctors often use terms like prognosis, life expectancy, or expectation, rather than definitive statements on the degree of someone’s terminal prognosis. The variables in prognosis make the amendment necessary.

The term “typically” better acknowledges the limitations of the knowledge of medical practitioners. In written evidence, Dr Chris Paxton, a retired GP of 38 years, says:

“No doctor can accurately predict if a terminally ill patient has six months or more to live. I have seen many patients being told they have only months to live, continuing living many years after their ‘terminal’ diagnosis.”

The concept of a condition being “typically” terminal acknowledges that although a disease usually leads to death, there may be exceptions where individuals survive longer than expected, or even achieve remission.

The process of assisted dying must maintain honesty and transparency with patients who are seeking assisted death. A declaration of certainty is implied by using the word “inevitably”. In her written evidence, Dr Ariel Dempsey, who is currently studying end of life care, says:

“Physician prognostic estimates are variable, optimistic/pessimistic, uncertain, and more often than not, inaccurate. For example, a prognosis of 6 months is required for hospice eligibility in the U.S., yet it is not uncommon for hospice patients to live beyond six months, even without life-prolonging treatment.”

For individuals seeking assisted death, the use of the word “inevitably” can lead to an over-reliance and overconfidence in the judgment of their doctors. If someone believes without question that they will inevitably die within six months, an assisted death may seem like an obvious and minimally life-limiting choice. The problem is that a claim that someone’s death is imminent and inevitable within six months simply may not be true.

Not only does the use of the word “inevitable” risk embedding dishonesty in our law, but it risks doctors who agree to engage in assisted dying and end of life care becoming overburdened with the responsibility of proclaiming an individual’s prognosis. Having considered the circumstances that surround a person’s illness, a doctor can only give a prognosis that is typical and give a typical indication of their life expectancy.

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Juliet Campbell Portrait Juliet Campbell
- Hansard - -

I have almost finished, so I will carry on.

If we give doctors the essentially impossible task of proving that death will inevitability occur in six months, there is a risk of an individual being advised to stop treatment, to accelerate them artificially into a serious or terminal state or speed it up to ensure their eligibility. As medical intervention is so key in the prognosis of a seriously ill patient, it makes no sense to me to use language that is not consistent with real-life medical experiences or reasonably within the scope of medical diagnosis.

Tom Gordon Portrait Tom Gordon (Harrogate and Knaresborough) (LD)
- Hansard - - - Excerpts

It is an honour to serve under your chairmanship, Mr Dowd. I speak in support of amendment 234, which is tabled in my name and seeks to ensure that people suffering from neurodegenerative conditions are not excluded from the dignity and autonomy that the Bill seeks to provide. The amendment would extend the eligibility period for those with neurodegenerative conditions from six months to 12 months—a simple yet crucial change that could alleviate needless suffering and ensure fairness in our approach to end of life care.

The intention of the amendment is to change the law to match that in five of the six Australian states. The wording mirrors that found in those jurisdictions. Conditions that would be affected by the change include motor neurone disease, Huntington’s disease, multiple system atrophy, progressive supranuclear palsy, Parkinson’s and many others. Although Alzheimer’s is a neuro-degenerative condition, those with Alzheimer’s would not be eligible for an assisted death should the amendment pass because they would not have the mental capacity.

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Kim Leadbeater Portrait Kim Leadbeater
- Hansard - - - Excerpts

Colleagues will be pleased to know that, despite my copious notes, I do not intend to speak for very long, because I believe we have had a very thorough and robust debate on these issues. The Minister makes a valuable point on amendment 402, which I do not think anyone else raised. Coincidentally, it relates to the person in the Public Gallery this morning, whose mum had a horrible form of cancer and had to have her tongue removed. She would have stopped eating or drinking, but it was not a choice; it was an inevitable result of her condition. She would have been excluded from having an assisted death, which I am sure is not the intention of my hon. Friend the Member for Bradford West.

We have had an excellent debate and covered a lot of ground. I do not intend to add anything more on this group of amendments. I will only say that if we get a move on, we might be able to get through clause 2 before we close at 5 o’clock.

Juliet Campbell Portrait Juliet Campbell
- Hansard - -

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 9, in clause 2, page 1, line 24, after “reversed” insert

“or the progress controlled or substantially slowed”.—(Rebecca Paul.)

This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.

Question put, That the amendment be made.

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

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Department: Department of Health and Social Care

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

Juliet Campbell Excerpts
Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

I agree with my hon. Friend on that point. As I stated at the start of my comments, officials have worked with her on new clause 19, which I think goes a long way to clearing up many of the points that have been raised, including hers.

None Portrait The Chair
- Hansard -

Order. The Minister is in the middle of responding to a particular question. Will Members wait until he has done so before standing up to ask a question on a question, please?

Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

Thank you, Mr Dowd. I have answered the question from my hon. Friend the Member for Spen Valley and am happy to take another intervention.

Juliet Campbell Portrait Juliet Campbell
- Hansard - -

Throughout the debate, we have spoken consistently about things that happen normally within medical practice, but the amendment we are discussing would move us away from ordinary practice. Could the Minister explain why we would do that?

Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

As I have set out, officials have looked at amendment 297 and raised a couple of flags or questions about it. One is what we have discussed about the transcript. The other is that it is not clear whether other people should be included in the consultation. I do not think it is so much about departing from common practice as about the questions that the amendment raises. As always, the Government are neutral. The Government trust that if the Committee, in its wisdom, sees fit to pass the amendment, it will be workable, but as things stand it raises a number of questions. That is all I am flagging.

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Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 341, in clause 4, page 2, line 33, leave out from “subsection (3)” to the end of line 36 and insert

“is not required to refer the person to another medical practitioner but must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”—(Rebecca Paul.)

This amendment would provide that a registered medical practitioner who is unable or unwilling to have the preliminary discussion with a person must provide information to the person about where they can have that discussion, but that this need not take the form of a referral.

Juliet Campbell Portrait Juliet Campbell
- Hansard - -

I beg to move amendment 125, in clause 4, page 2, line 35, leave out from start of line to end of line 36 and insert

“who is on the Register of Assisted Dying Medical Practitioners.”

This amendment provides that only a medical practitioner who is on the Register of Assisted Dying Medical Practitioners as provided for in NC7 would have a person referred to them.

None Portrait The Chair
- Hansard -

With this it will be convenient to discuss the following:

Amendment 126, in clause 23, page 15, line 5, at end insert—

“(1A) Medical practitioners who wish to provide assistance under this Act must “opt-in” to the Register of Assisted Dying Medical Practitioners under clause (Register of Assisted Dying Medical Practitioners).”

This amendment provides that any medical practitioner who wishes to provide assistance under the Act must have opted in to the Register of Medical practitioners.

New clause 7—Register of Assisted Dying Medical Practitioners

“(1) The Secretary of State must, by regulation, establish a Register of Assisted Dying Medical Practitioners.

(2) A medical professional may only carry out the role of co-ordinating doctor or independent doctor under this Act may if they are listed on the Register of Assisted Dying Medical Practitioners.

(3) Initial discussions under section 4 may only take place with a registered medical practitioner if they are listed on the Register of Assisted Dying Medical Practitioners.

(4) Regulations made under subsection (1) must provide that the Register of Assisted Dying Medical Practitioners includes all registered practitioners other than those to whom the conditions in subsections (5) and (6) apply.

(5) The condition in this subsection is that only medical practitioners who have completed such training as required by the Secretary of State by regulation must be listed on the Register.

(6) The condition in this subsection is that only medical practitioners who wish to provide assistance under the Act must “opt in” to be listed on the Register.

(7) Regulations under subsection (1) and subsection (5) are subject to the affirmative procedure.

(8) Before making regulations under subsection (1) and subsection (5), the Secretary of State must consult such persons as they consider appropriate.

(9) Regulations under subsection (5) must be laid within six months of the passing of this Act.

(10) Regulations under subsection (1) must be laid within twelve months of the passing of this Act.”

This new clause requires the Secretary of State, by regulation, to create a Register of Assisted Dying Medical Practitioners. Only those who are on the register would be able to hold initial discussions or act as a co-ordinating or independent doctor, or hold initial discussions under section 4 of the Act. Only those who have had training as specified by the Secretary of State in regulations can be on the Register. Registered medical practitioners would only appear on the register if they had “opted in”.

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Juliet Campbell Portrait Juliet Campbell
- Hansard - -

I will speak to amendments 125 and 126, which are linked to new clause 7. Given the discussion we have just had, and given that amendment 341 has been made, I will not push amendment 125 to a vote. Amendment 126, however, provides that any medical practitioner who wishes to provide assistance under the Bill must have opted in to a register or a service for practitioners who are comfortable with providing care related to assisted dying. In other conversations, my hon. Friend the Member for Spen Valley has said that the opt-in model is provided within the Bill. The challenge is that it is not explicit in the Bill, and I would like to see it so.

The BMA wrote in its evidence to the Committee:

“The Bill should be based on an ‘opt-in’ model, so that only those doctors who positively choose to participate are able to do so. Doctors who opt in to provide the service should also be able to choose which parts of the service they are willing to provide (e.g. assessing eligibility and/or prescribing for eligible patients)…An opt-in model is not explicit in the Bill…We urge the Committee to make it explicit in the Bill that this is an opt-in arrangement for doctors.”

The BMA says that it wants it explicit in the Bill, and at the moment it is not. The Royal College of General Practitioners aligned with this viewpoint, stating that an explicit opt-in system is completely necessary in the Bill. It is my hope that members of the Committee will support amendment 126, which I intend to push to a vote.

Kit Malthouse Portrait Kit Malthouse
- Hansard - - - Excerpts

I am afraid that I will disappoint the hon. Lady by rising to oppose her amendments, although I understand why she has tabled them.

It was clear from the BMA’s evidence that it opposes the creation of a list of registered providers, which the hon. Lady proposes to create with these amendments. The BMA’s opposition and my opposition are based on two or three—

Juliet Campbell Portrait Juliet Campbell
- Hansard - -

Based on the fact that we agreed on amendment 341, I am prepared not to press amendment 125 to a vote. It is amendment 126 that I am proposing.

Kit Malthouse Portrait Kit Malthouse
- Hansard - - - Excerpts

I understand that, but amendment 126 also refers to a register of appropriate medical practitioners being maintained. Of course, new clause 7 would similarly create such a list. We are debating all three proposals, so I wanted to explain why I oppose them, as indeed the BMA does.

As has been outlined in previous speeches, the Bill creates an opt-in model effectively, whereby people who want to be the co-ordinating doctor or indeed the second doctor have to opt in and be trained, and therefore become accredited, so by definition they would be approved for that service.

However, the Bill does not envisage that the initial conversation is necessarily with the co-ordinating doctor. There might well be other medical personnel or practitioners—we have talked a lot about semantics in this debate—who are presented with the situation where a desperate person, somebody who has been given some extremely bad news, wants to talk about their situation and what their options might be. We hope and believe that training will spread throughout the NHS to those who want it. Nevertheless, we have to leave open the option that someone may not be accredited and that they may need to pass on someone, by whatever means the Bill determines, to a doctor who is accredited, who can act as the co-ordinating doctor, who has had the appropriate training and opted in, and I am afraid the register would not allow for that.

The second thing that concerns me slightly, and which we need to avoid for the benefit of both the patient and the system, is any kind of “doctor shopping”—the notion that there is a list of doctors that I can shop around and choose from. I worry slightly about that.

My hope is that these types of conversations, which are necessarily private and sensitive, will take place in an environment of embrace and familiarity between doctor and patient. We have talked a bit about whether doctors have to refer or provide information—obviously, we have just accepted an amendment that seeks to set out how that will work. What I would oppose, for two reasons, is the creation of a list that people can move up and down on, and pick somebody they like the look of, or who they think might be handy for them. First, I am not sure that it would be entirely reputable; secondly, we have to remember who we are dealing with here. These are dying people who may not have long left to live—we are talking about six months as a minimum, but actually they might have only two or three months to go. We need to create a sense that this is something that will be provided to them in an environment that is familiar. They will not have to spend their time finding a doctor on a list, and their phone number, then ringing up their office and saying, “This is what I want to do. Can I make an appointment?” There is a privacy aspect to it.

My third objection is, to be honest, about privacy—not just that of the patient, but that of the doctor. The hon. Lady will know that unfortunately—I do not know whether she thinks it is unfortunate, but I do—there are some people who object so strongly, for example, to abortion that they are willing to go and protest outside clinics that provide that service. This House has legislated to balance the rights of those who want to avail themselves of that service and those who want to protest. That has been a source of conflict.

I am afraid that a public list of doctors who provide this service would raise questions about the privacy of doctors, about patient privacy and about access to that service. I am concerned about it from that point of view.

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None Portrait The Chair
- Hansard -

For clarity, amendment 125 is not being pressed to a Division, as I understand it. If the hon. Member for Broxtowe withdraws amendment 125, there will be an opportunity to vote on amendment 126 and new clause 7 later.

Juliet Campbell Portrait Juliet Campbell
- Hansard - -

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 288, in clause 4, page 2, line 36, at end insert—

“(6) All efforts to dissuade the person from ending their own life must be recorded in the clinical records and subsequently made available to the medical examiner.”—(Sean Woodcock.)

This amendment would require the coordinating doctor to record efforts to dissuade the person from taking their own life and subsequently make this available to the medical examiner.

Question put, That the amendment be made.

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

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Department: Department of Health and Social Care

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

Juliet Campbell Excerpts
Juliet Campbell Portrait Juliet Campbell (Broxtowe) (Lab)
- Hansard - -

I will speak to amendment 127, which is a probing amendment. I will not press it to a vote, but the reason I tabled it is that I felt that the phrase “as soon as reasonably practicable” was a little vague. I was taking into consideration the fact that we often talk about people who have six months to live, who are eligible for the assisted death, but sometimes people learn later on and do not have six months. If people are thinking about having an assisted death, there might be some pace at which the doctors need to work together—the co-ordinating doctor and whoever else they speak to.

I put 10 days, because I needed to put something down, and that is why I am saying amendment 127 is probing, but I do think that we need to be a little tighter with the timeframe in which we enable doctors to speak to each other, so that the patient is aware of what is happening. Also, if the patient wants to change their mind and is speaking to another doctor, they would know what timeframe they have got. The amendment is probing, and I will not press it to a vote.

Rebecca Paul Portrait Rebecca Paul
- Hansard - - - Excerpts

I think most points have been covered, so I will be brief. The point of the amendment 296 is to recognise the challenges faced by medical practitioners in the NHS. It is really well intended. I suspect that there are different ways to do this, which we could discuss, but the amendment would recognise that medical practitioners will come under a lot of pressure.

The very nature of the assisted dying process means there is pressure to move quickly—for obvious reasons. If someone is in pain and an assisted death is what they have chosen to do, they are going to want to move forward at pace. It cannot be as usual, with however long it can take in the NHS—often for a normal procedure. The point of the amendment is simply to be cognisant of the fact that other patients, too, require healthcare. This comes back to the debate we have had many times about what is healthcare and what is not. It is one of the issues that comes up when we have assisted dying amalgamated with general healthcare in the NHS.

We are hearing concerns from doctors on the frontline. In written evidence, eight doctors, six of them GPs, say that the NHS lacks both the time and the capacity to create the new role of co-ordinating doctor with its grave responsibilities. The statistics bear out their concerns. In a 2024 survey by the Royal College of General Practitioners, over 40% of UK GPs who responded said that they were “unlikely” to be practising still in five years’ time; 40% feel stressed to the point of “not coping” at least once a week; and 79% are concerned about having fewer GPs at their practice and its impact on the quality of care that their practice can deliver. The reality of the matter is that we have to recognise that the introduction of assisted dying places another pressure on our health system, and to try to address that head on.

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

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Department: Department of Health and Social Care

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

Juliet Campbell Excerpts
Simon Opher Portrait Dr Opher
- Hansard - - - Excerpts

Actually no, I will not. I will go on, if that is okay.

Amendment 459 states that the second-opinion doctor “must produce a report” outlining their reasons for reaching a different opinion, but the whole nature of this is that the doctor is independent. As we have heard, if it is suggested that someone either is or is not allowed to get an assisted death, that might affect the assessment of the independent doctor. It would not be good medical practice to have that assessment in front of the independent doctor—that would lead to poor assessments. We need a right to a second opinion and we should have a truly independent doctor.

Amendment 460, which is the last in the group, would allow a patient only one declaration in any part of their lives, even if circumstances change. Although there will be vanishingly few instances where that would be relevant, I do not feel that such a provision would make the Bill any fairer or safer.

Amendment 143, tabled by my hon. Friend the Member for Broxtowe, would allow a second and a third opinion. It is my opinion, and the opinion of many of us, that we do not want doctor shopping. We want to allow one second opinion from an independent doctor, but not more than that.

Juliet Campbell Portrait Juliet Campbell (Broxtowe) (Lab)
- Hansard - -

Amendment 143 has been withdrawn.

Simon Opher Portrait Dr Opher
- Hansard - - - Excerpts

Has it? Okay. I thank my hon. Friend.

The amendments in this group all come from a good place, and I understand where hon. Members are coming from, but I do not feel that anything in them would make the Bill any safer or fairer for patients.