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

Juliet Campbell Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Dr Shastri-Hurst]

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 (Broxtowe) (Lab)]

Will the hon. Gentleman give way?

[Dr Shastri-Hurst]

Go on—I am feeling generous.

[Juliet Campbell]

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.

[Dr Shastri-Hurst]

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 (Tenth sitting)

Juliet Campbell Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Jake Richards]

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 (Broxtowe) (Lab)]

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]

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]

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]

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 ---

[Dr Opher]

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.

[Juliet Campbell]

rose—

[Naz Shah]

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]

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]

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]

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]

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]

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]

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 (Ninth sitting)

Juliet Campbell Excerpts

Tuesday 11th February 2025 Public Bill Committees

[Kim Leadbeater]

On that point, it is not an either/or. It is not just about passing legislation that improves choice and gives autonomy and dignity to dying people, and indeed fixes the current failings of the law as it stands, as we have discussed in great detail. It is about providing safeguards that make sure that is done safely, securely and robustly, and that address the issues and concerns we are discussing. It is not an either/or and it is important to make that distinction.

[Juliet Campbell (Broxtowe) (Lab)]

rose—

[Danny Kruger]

I am happy to give way to the hon. Lady.

[Danny Kruger]

If the hon. Lady would like to intervene on me, I would be happy to give way.

[Juliet Campbell]

To go back to the amendment, we were talking about the Mental Capacity Act. The use of that Act must be drawn into question, because it was never intended as legislation for assisted dying. Much of what has been said in favour of using the MCA relates to it being tried and tested, and people understanding it, and the idea that to use anything else would make life complicated for professionals who use it as part of their day-to-day activities when assessing capacity.

On the surface, those reasons seem reasonable, and it is an easy option. However, if the MCA does not meet the threshold of meeting the needs of everyone, convenience should not be the deciding factor. Convenience cannot be considered as a sufficient reason to use the MCA as a fundamental element of the Bill. The assisted dying Bill in itself is enough reason to have an alternative measure to determine an individual’s eligibility to be considered for assisted dying.

[The Chair]

Order. I am going to have to draw the hon. Lady to order. An intervention is an intervention. I accept that we have slightly more flexibility in Committee than we do on the Floor of the House, but the hon Lady, and indeed all hon. Members, have to understand that speeches are speeches and interventions are interventions. That said, it is the job of the Chair to make absolutely certain that every Member has the right and the opportunity to speak. If the hon. Lady wishes to make a speech, that is entirely within her right: all she has to do is indicate to the Chair that she would like to be called and she will get called.

--- Later in debate ---

[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.

[Juliet Campbell]

I thank the Committee for allowing me to reiterate the importance of a stand-alone approach. The use of the Mental Capacity Act must be questioned, as the Act was never intended to legislate for assisted dying. Much of what has been said in favour of using the Mental Capacity Act has been about it being tried and tested, so people understand it and to use anything else would make life complicated for professionals who use it as part of their day-to-day activities in assessing capacity.

On the surface, those reasons do seem reasonable and make the Mental Capacity Act an easy option. If, however, the Act does not pass the threshold of meeting everyone’s needs, convenience should not be the deciding factor. Convenience cannot be considered a sufficient reason to use the Mental Capacity Act, as it is a fundamental element of the Bill. The Bill is in itself enough reason to have an alternative or stand-alone approach to determine an individual’s eligibility to be considered for an assisted death.

Capacity is a complicated issue and cannot be oversimplified for convenience. The MCA may be fit for its current purpose, but it is not fit for the purpose of the assisted dying Bill. I have spent more than 20 years working on the equalities agenda, and one of the things that I have learned—this has been a consistent shortfall—is that we try to address new challenges with old solutions, rather than trying to meet the needs of the people we intend to serve. That is the reason why I will be supporting the amendment.

[The Minister for Care (Stephen Kinnock)]

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

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

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

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

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

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

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

--- Later in debate ---

[Danny Kruger]

The hon. Gentleman is absolutely right. Once again, it is a shame that we are feeling our way in the absence of that assessment. Nevertheless, I think we all have experience and we can draw on the evidence. The hon. Member for Bradford West made a very powerful point, and she was absolutely right. I spoke earlier about the evidence on suicide among the male prison population; I have experience of working with women in prison as well. There is a genuine danger of chronic, almost epidemic, self-harm among the female prison population. Likewise—this is a fact that we need to bear in mind throughout the debate—suicide is itself contagious. That is why it is so important to discuss it in a responsible way. The option—I use the term advisedly—of assisted suicide is itself dangerous in the context of a prison population in which these ideas are contagious.

My right hon. Friend the Member for North West Hampshire talks about the need to assess each case on its own merits, individually. I recognise that, and in principle of course that is what we should be doing. Nevertheless, that assumes that the safeguards in the Bill are adequate to the challenge of dealing with people in such particularly vulnerable circumstances. I am concerned that they are not adequate anyway. I believe very strongly that they are not appropriate to people in these circumstances and that therefore it is appropriate to have what he calls a blanket ban.

As I said in an intervention earlier, we have to treat particular classes of people in the same way. We do that all the time, with respect specifically to the prison population. The fact is that we have to draw the line somewhere. We are drawing the line in all sorts of places in this Bill—around the age limit and around diagnosis and prognosis. I think it would be very appropriate, given the extreme vulnerability of these populations, to draw it around them and protect them from the vulnerabilities and dangers that I think all Members recognise might apply in certain circumstances. They will apply in heightened likelihood to these populations.

I do not propose to press these amendments to a vote, but I am grateful to hon. Members for the points that they have made, and I hope that the concerns have been noted. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 179, in clause 1, page 1, line 13, after “provided” insert “in England or Wales”.—(Kim Leadbeater.)

This amendment limits the assistance that may be provided in accordance with the Bill to assistance in England or Wales.

[Juliet Campbell]

I beg to move amendment 109, in clause 1, page 1, line 17, after first “and” insert “demonstrably”.

This amendment reflects the changes in Amendments 110 to 112 that change the requirement from having to establish that a person who wishes to end their own life under the Act has clear, settled and informed wish, to a clear, settled and demonstrably informed wish.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 110, in clause 7, page 4, line 13, after “and” insert “demonstrably”.

This amendment requires the coordinating doctor to ascertain whether, in their opinion, the person has a “demonstrably” informed wish to end their own life.

Amendment 111, in clause 8, page 4, line 36, after “and” insert “demonstrably”.

This amendment requires the independent doctor to ascertain whether, in their opinion, the person has a “demonstrably” informed wish to end their own life.

Amendment 112, in clause 9, page 6, line 13, at end insert—

“(da) be satisfied that, in their opinion, the person has demonstrated their understanding of the matters in subsections (2)(b) to (2)(d).”

This amendment requires the assessing doctor to be satisfied that, in their opinion, the person has demonstrated their understanding of the matters that have to be discussed and the information provided under subsections (2)(b) to (2)(d).

[Juliet Campbell]

The amendment would strengthen the Bill by establishing a benchmark for the level of understanding of assisted dying and its process that the person needs to demonstrate to start the process. That will help to ensure that the person requesting assisted dying understands what they are asking for, so that doctors and other professionals can be assured that those who are engaged in the process have come to their own informed choice. Being informed conceptually is meaningless; it adds nothing to the Bill unless we can establish that the person can demonstrate to healthcare professionals and others that they understand assisted dying and the process.

--- Later in debate ---

[Danny Kruger]

The hon. Gentleman is a great stickler for doing things in the right order. I am grateful to him for calling us to order on that point again. I dare say that he is absolutely right. All these issues are rather interwoven through the Bill.

I will finish on a point about the role of the Court of Appeal. A rejected application—although not an approved application, I am sorry to say—can be appealed under clause 12. For the Court of Appeal’s review to be substantive, it must surely be able to review the evidence as fully as possible on what happened throughout the terminally ill person’s application.

[Juliet Campbell]

I still think that it is important to add “demonstrably”. The word should be included; I do not see that it would create any additional confusion. The right hon. Member for North West Hampshire said that he had tabled some amendments later on in the Bill. However, that is later on. Putting in “demonstrably” here would strengthen his proposal.

[Naz Shah]

Does my hon. Friend share my frustration that when the Minister says, “This is the Government’s position,” he says so in the absence of an equality assessment or impact assessment? I appreciate that the Government have outlined that the process is different, but in the absence of those assessments, where do we find the weight to support those positions?

[Juliet Campbell]

I absolutely agree. The word “demonstrably” could produce that weight. It could add to every other part of the Bill that a person must be able to demonstrate to health and social care professionals that they understand what assisted dying is and understand the process that will be gone through. The person needs to be able to demonstrate to other professionals that they understand. A written report by a health or social care professional is not enough; the person themselves will have to demonstrate that they have a full and clear understanding.

[The Chair]

Does the hon. Lady wish to press the amendment to a Division? It is her call.

[Juliet Campbell]

I will not push it to a vote, Sir Roger. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

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

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

Juliet Campbell Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

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 (Broxtowe) (Lab)]

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

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

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

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

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

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

[Daniel Francis]

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

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

Professor Preston: I can take that if you want.

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

Juliet Campbell Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Tom Gordon]

That was a really comprehensive answer. I think the key point that you touched on is the multidisciplinary approach.

[Juliet Campbell (Broxtowe) (Lab)]

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]

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.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

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)

Juliet Campbell Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Juliet Campbell (Broxtowe) (Lab)]

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.

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

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.