Jack Abbott
MP for Ipswich · Labour (Co-op) · United Kingdom
“T6. I recently visited Northgate high school in Ipswich with the Children’s Commissioner. As ever, the pupils were thoughtful and articulate about what they needed for the future, but the subject of digital and AI came up a lot. They said that they need greater access to public services and skilling up for future employment.”
“As the Minister says, conversion therapy is dangerous, widely discredited and frankly barbaric, and it is about time we got rid of it. Suffolk Pride’s fringe festival starts next month with Pride Blooms. I ask the Minister to make a powerful statement today, and to say that this terrible practice will end under the Labour Government.”
“I thank the Minister for her detailed speech. I look forward to working with her over the coming months and years on these important issues. I thank everybody who has contributed and shared not just the experiences of their constituents—as awful and harrowing as they often are—but some deeply personal stories.”
“Women learn from a young age to hide their pain away because they must be overreacting and to feign headaches and stomach pains, migraines and food poisoning. More than 1 million women mask period pain sick days every year, because they feel unable to tell their boss the true reason.”
“Despite years of chest pain and breathing difficulties, she was refused referrals to a thoracic specialist and ended up seeking a private opinion. She lives in daily pelvic and chest pain, constantly deals with breathlessness and spends many days bedbound—thankfully not today, Monica.”
“I thank my hon. Friend and could not agree more. For women with endometriosis who may have already waited years for a GP even to mention the word, and who have already been utterly failed by institutionalised and deeply structural medical misogyny, this is a complete dereliction of duty. The human cost of inaction is devastating.”
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“My hon. Friend makes the case that some people will not be given the full range of medical options available to them. Presumably, though, the amendment would limit that even further, because they will not be able to understand assisted dying fully unless they have raised it themselves. We are actually restricting the full range of medical options for those people.”
“My hon. Friend makes a powerful point, but I would gently point out, as has been said already this afternoon, that the conversations between doctor and patient will not be that straightforward. A range of options will be presented to the patients. I do not think it would be a case of “Here is the option of assisted dying. This is your only option.” There will be a huge range of options on the table, as is right and proper.”
“I have been very open and have said that in principle I am supportive of assisted dying, but that I could not support it because the Bill was not strong enough in its current state. I do not think that the amendments tabled so far will strengthen the Bill; in fact, they might leave a lot of open ends, despite the very good intentions behind a lot of them.”
“I say gently to the hon. Member that—particularly on the previous clause—I have been very sympathetic to several of the amendments. Candidly, however, with due respect to all the hon. Members across the House who submitted this, I do not think that they have been particularly well written. I think that they leave quite a lot of ambiguity in a lot of areas. We had a discussion in the week before the recess, on a number of areas, about the word “only”. I heard it suggested earlier that the principle is about the spirit in which things are taken. The reality is that I am very sympathetic to a lot of what is proposed, but a number of the amendments leave quite a lot of open ends. That has been a particular issue.”
“Most of the discussion on amendment 181 has centred on the word “only”. Just to get clarification on this point, would someone with an eating disorder who was later diagnosed with a terminal illness still be able to access an assisted death, if that were required under the amendment?”
“Just to be absolutely clear for everyone in the room, and in case I was not specific enough, if that terminal illness is a result of the eating disorder, rather than, say, of that person also being diagnosed with a terminal illness such as cancer, would they be covered under amendment 181?”
“Just as a point of clarification, I remember asking one of the witnesses at our oral evidence sessions about this very issue—Sir Nicholas Mostyn, an esteemed judge who has written and spoken about the issue extensively. We asked his views about neurodegenerative diseases and extending the time to 12 months, so it was something that we were aware of and discussed as a Committee. In fairness to the hon. Member for Harrogate and Knaresborough, it has not come completely out of the blue.”
“A line has to be drawn in the sand somewhere. Will the hon. Member define what an adequate timeline would look like for him to be satisfied?”
“As I say, I am sympathetic to what the amendment is trying to do, but I feel that the way it is written would inadvertently include a huge amount of people who are doing it for their own motivations, but clearly the reality of life is that we consider other people as well.”
“To move away from the theoretical, like my hon. Friend the Member for Rother Valley I am sympathetic to what this amendment is trying to do. To give a practical example, let us say that I have been given a terminal diagnosis and say to the doctor, “I personally do not want to go through pain and agony over the next few months, but I am also thinking about my family—I do not want them to suffer alongside me.” I would therefore fall under the definition in this amendment—the hon. Member for Bradford West is shaking her head, but the reality is that I would—because I would also be acting for the benefit of others; I have cited that alongside my own physical pain as a potential reason that I want to do this.”
“My hon. Friend mentions the word “only”, but that word does not appear in this amendment. That is the issue: we are opening this up. The amendment says: “acting for their own sake rather than for the benefit of others.” In my example, I cited the benefit of others as potential reason that I might seek this.”
“What I am getting at is that there are a huge number of scales and considerations to factor in with depression, but does the Act allow us to look at those when it comes to depression?”
“I am grateful to the hon. Member; he has given way a number of times, and I am sure he wants to make some progress. To return to the scope of the debate—I am sure you will be delighted to hear that, Ms McVey—part of the rationale cited for making this change from “capacity” to “ability” is depression, and given what we are talking about, there is a very real possibility that someone will become depressed after diagnosis. In the hon. Member’s experience, are patients with a clinical diagnosis of depression currently deemed capable under the Mental Capacity Act of making potentially life-changing decisions about treatment or whatever it might be? Are there any scenarios in which he would offer or remove certain treatment because of their depressed state?”
“We have spoken a lot today about further safeguards and provisions, beyond the Mental Capacity Act. However, I note that my hon. Friend has tabled amendment 339, which states that if a “person has a learning disability or is autistic” they “must be provided with accessible information and given sufficient time to consider it” and that, additionally, there must be a “supporter” or “advocate” with them. If that amendment was passed, would that satisfy some of my hon. Friend’s concerns about the Act?”
“It is not your argument, Sir Roger; it is my hon. Friend’s argument. I apologise. To follow the basic premise of my hon. Friend’s argument, she is saying that the Mental Capacity Act is not tried and tested for what we are discussing. However, by definition, neither is this amendment; if anything, it is even worse, because words such as “ability”, which we are discussing here, have absolutely no basis, as was admitted by the hon. Member for East Wiltshire. On that basic premise, my hon. Friend will not agree with any amendment that is tabled today, because none of them is tried and tested. Is that correct?”
“My hon. Friend said that the Mental Capacity Act is not tried and tested, and I was challenging the premise that we should apply a concept that is not tried and tested in this or any other country. She is saying, “I can’t support the Mental Capacity Act in its current form because it is not tried and tested,” but, following that argument, she would presumably not support this amendment or any others because what they propose is also not tried and tested.”
“As a clinician, personally, I think that 12 months for neurodegenerative conditions is really helpful, because—as you have heard—if you are looking at prognosis and trajectories, with things like cancer, a patient will be going along and then often have quite a steep and rapid decline. That six-month prognosis is quite noticeable, but for patients with conditions like motor neurone disease, their decline can be slow and very distressing to them. Also, when trying to balance the prognosis along with getting them through the process, 12 months is really helpful, so if there was any chance, I would be strongly advocating for that.”
“Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses. The Queensland Parliament took a different approach to address that particular feedback. Dr Furst: From South Australia’s perspective, we are similar to New South Wales; we have less than six months for all conditions bar neurodegenerative conditions, which is less than 12 months.”
“In New South Wales, that was six months for a terminal illness, or 12 months if that terminal illness was a neurodegenerative disorder. We had learned from the other schemes in Australia that that was going to be important because of the decline that occurs in neurodegenerative disorders like motor neurone disease, for example. It was because of that that we went down that path. Professor Blake: I should add that in Queensland, there is no such distinction in life expectation between other diseases and neurodegenerative diseases.”
“Q My question is to you, Mr Greenwich. I understand that in New South Wales—and please do correct me if I am wrong—similarly to the Bill we are proposing, you adopted legalised assisted dying for those who are terminally ill and will die within six months, but you also added an additional criterion, which was within 12 months for a neurodegenerative disease such as motor neurone disease. That element is not proposed in our Bill, but we have heard from other witnesses over previous days about that issue. What reflections might you have regarding that, and why did you add that element into the Bill beyond the six months that we are proposing here? Alex Greenwich: Thank you very much for your question. At the outset, I will just stress that every jurisdiction should legislate the form of voluntary assisted dying that is appropriate to them.”
“If you step back and think about what the Bill is really about, at its simplest, it is about the decisional right to end one’s own life in terminal illness. Associated with that is the concept of mental capacity. I have had over 20 years of research interest in mental capacity. When I look at the issues relating to mental capacity with the Bill, they are complex, but the other important point to understand is that they are very novel. We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill.”
“Q 286 Professor Owen, you have talked extensively about the complexity of the Bill. I think it fair to say that our previous witnesses this week believe that the simplest safeguards are the safest. I stress that the simplest does not necessarily mean the weakest; it means a straightforward plan. Do you agree with the points that the chief medical officer and others have made about simplicity? Where do you stand on that, and on the broader point about complexity? Professor Owen: I am somewhat reminded of the old adage that for every complex problem there is a simple solution that is false. We are dealing with complexity here—I think we have to accept that—but complex law or poor law will not provide good safeguards.”
“Then they seek help from healthcare professionals, and that is where they get a varied response depending on who they access. It is a bit of a lottery, because it only a minority of doctors will be willing to do this. That is where the challenge comes in.”
“Equally, when it comes to assisted dying, we have done interviews with bereaved families and healthcare workers in the United States, the Netherlands and Switzerland, and also with British families who access assisted dying through Dignitas. We hear from the family members that it is something they have really thought about for a long time. It might come to a crunch point where they know they are potentially going to lose capacity, they are potentially going to lose the abilities that are important to them—although for someone else, losing them may not be an issue. That is when people start to seek help. They usually first seek help from one or two family members. There is often secrecy around that, because you do not want everyone talking about it. It is quite exhausting to talk about. It is a decision you have made.”
“Q Professor Preston, you have extensive research into palliative and end-of-life care. It would be really helpful for the Committee if you could describe some of the underlying motivations about why people come to the decisions they do when choosing end-of-life care, and how you feel assisted dying would sit as an available option for those making those decisions, if it was available. Professor Preston: The decision to go into palliative care is often made more by a clinical team, recommending that there be changes in the goals of care and what we are to aiming do. There are two big European studies looking at that at the moment, in chronic obstructive pulmonary disease and cancer. It is about trying to get triggers so that those changes in care can happen, because people cannot make decisions unless they are informed and they are aware.”
“If they are seen as an expert support to the primary decision maker, that decision maker would need to decide whether a psychiatrist was needed in every case. We know from Oregon over the years that psychiatrists were involved very frequently at the beginning of the process, and now they are involved by request in around 3% of completed assisted dying cases. We do not have data on what the involvement is across all requests.”
“Psychiatrists sometimes assess capacity and make the determination, but it is usually about psychiatric intervention and issues that are within their area of clinical expertise, such as care and treatment, capacity assessment around the Mental Health Act 1983 and whether somebody is able to consent to their treatment. In the Bill, I am not absolutely clear whether the psychiatrist is considered to be a primary decision maker on whether somebody should be eligible based on capacity, or whether their role is to advise the decision maker, who would be the primary doctor or one of two doctors. Should a psychiatrist be involved in every case? If there is a view that psychiatric disorders should be assessed for, and ideally diagnosed or ruled out, in every case, a psychiatrist might have a role.”
“Dr Price: If I take you to thinking about what an assessment of capacity would normally look like, if we think about clinical practice, a psychiatrist would normally get involved in an assessment of capacity if the decision maker was unclear about whether that person could make a decision. The psychiatrist’s role in that capacity assessment would be to look for the presence of mental disorder, and at whether mental disorder was likely to be impacting on that person’s decision making. They would advise the decision maker, and the decision maker would then have the clinical role of thinking about that information and assessing capacity with that in mind.”
“Q My question is also for you, Dr Price. The Royal College of Psychiatrists has been really clear in its statement that we as parliamentarians have to consider the outstanding questions about a person’s capacity to decide to end their own life, and whether it can be reliably assessed, and you particularly cite the implications for those with mental disorders, intellectual disabilities and neurodevelopmental conditions. Do you believe that anyone requesting assisted dying should be assessed automatically by a psychiatrist, or that certain criteria should have to be met for a psychiatric assessment to be undertaken?”
“I do not know why we are waiting five years after the Bill becomes an Act for an assessment of the adequacy of palliative care. We do not have such an assessment at the moment, and we absolutely need one. That is why we have recommended an additional clause that requires an assessment of the availability of palliative care, and a long-term funding strategy to enable that to be put in place. There are substantive things that could be done to the Bill to improve it in that regard.”
“I agree that we need to improve the situation regarding the number of people living in poverty, the state of palliative care and everything else, but what sort of change specifically do you think the Bill might make? Sam Royston: In the context of the Bill, I am a bit disappointed. From what I can see, there are two mentions of palliative care. One is a requirement in the initial discussion for a doctor to tell somebody what palliative care is available—not whether there should be any available palliative care, but whether it is available. That could be, “No, there is nothing available, I am afraid.” I think that is inadequate. The second reference is to having an assessment of the availability of palliative care after five years.”
“Q Sorry, Mr Royston, but I am coming back to you with a similar question. I do not think anyone on the Committee or, as Mr Porter mentioned, anyone who took part in our recent debate would disagree about the pretty awful state of palliative care at the moment. You are absolutely right to mention poverty and its impact on health and social outcomes. I am very sympathetic to the broader arguments you are making, but I want to direct us specifically to the Bill, because that is why we are here now. In your view, is the Bill problematic or otherwise, for some of the reasons you outlined? Will it fundamentally change any of the outcomes that you mentioned?”
“If people cannot choose to access palliative care, they cannot make a free choice about the care and support that they receive. They cannot make a choice about whether they can get the pain relief that they need. They cannot make a choice, often, about where they would rather die. They cannot make a choice about who they have around them at the end of life. They cannot make those choices if they do not have access to proper palliative care and the support that they need. That is why I would say that the issue of palliative care is intrinsic to the Bill. The two are fundamentally connected. You cannot have one without the other.”
“Q I sympathise totally with what you are saying about palliative care, but the principle of assisted dying is the main thrust of what we are debating. Will the principle of assisted dying, should it be introduced, fundamentally change, positively or negatively, many of the things that you have been describing? Sam Royston: I have heard on occasion this idea that we are dealing with assisted dying, and palliative care is another issue. To be honest, I am a bit tired of the “jam tomorrow” argument that says, “We will sort this out today. Palliative care is important, but we will sort that out another time.” We need to get palliative care sorted out and improved right now, as part of the Bill, because they are fundamentally connected. This Bill is about choice. It is about choice at the end of life.”
“Q I have a short final question. Is Marie Curie’s position basically that if palliative care does not improve, assisted dying should not be introduced in this country? Sam Royston: We are neutral on the question of whether assisted dying should be introduced. We are not neutral on the question of whether palliative care should be improved.”
“We are still operating in a context of resource limitation, but not resource limitation that is so prohibitive that it would make it particularly difficult to enact a law in the UK. The United Kingdom would be broadly able to follow any of the laws that exist in Australia and implement them very successfully.”
“Q Dr Fellingham, given your experience of both the British and the Australian healthcare systems, do you believe there are any fundamental differences that would affect how assisted dying is implemented in this country? If there are, how might we be able to mitigate them? Dr Fellingham: In the UK you are missing a number of the challenges that we have, such as the geographical challenges in a state as vast as Western Australia. You also have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry-pick the best bits of what is working well in those jurisdictions, and so create the very best, most robust and most patient-centred legislation you can. The healthcare systems are broadly similar. We are both first-world, developed western countries.”
“The margin of appreciation is very strong with this Parliament to make the decision. I also think, from a drafting perspective, the Bill very carefully defines the individuals—it has drawn the line. Certainly, the courts cannot do it; they cannot extend that line and they will always defer back to Parliament. If you craft the Bill as it is, I am very confident that it will be left here.”
“He was certainly asking for a process in which a decision could be made and some robust safeguards could be provided, which would end up with a court process, and that is what you have within the Bill. I also learned through that case, and others over the years, what the Human Rights Act, the European convention and parliamentary sovereignty mean here. On all three counts, the cases have always said that it is Parliament that makes the decision—so it is you who are deciding. I do not see a court overturning that. The courts in the Conway case—the High Court, the Court of Appeal and the Supreme Court—were all very clear that it is a matter for Parliament. I really do not see the European Court of Human Rights overturning it in any way at all, and that is from my long experience.”
“Q I have a question for Mr Amin. You worked on the judicial review of Noel Conway in 2018. For the benefit of the Committee and those watching, Mr Conway had terminal motor neurone disease and he looked to bring a judicial review in order to have the option of assisted death, when he was in the final six months of his life. Mr Amin, what were your experiences from that case that may inform the Committee’s learnings when looking at the Bill? Yogi Amin: Mr Conway was an extremely intelligent and brave individual who campaigned in this area. His strong view about autonomy led him to bring that case, and what he was arguing for in that case forms part of what you have here in the Bill.”
“Q4. The Ipswich northern bypass is a project of local, regional and national importance, and on which the future of our town and county hinges. However, this critical project has been gathering dust for years, repeatedly blocked by people who refuse to act in our long-term interests. The Prime Minister has set out how our Government will back the builders over the blockers, so will he now back the builders in my town and make this a project of national significance through our plan for change?”
“It changes one particular aspect in a very important way, but it seems to me that on the principle that we should be improving end-of-life discussions, which is where end-of-life care starts from, as well as supporting further the alleviation of symptoms and the provision of palliative care, there would be no disagreement from anybody in the medical or nursing professions, any other professions or the general public. That must be fundamental to how the Bill is thought about—”
“I think all medical, nursing and health professionals very strongly believe that palliative care and pain alleviation, which is not the same as palliative care but overlaps with it, and end-of-life care, which is also not the same but overlaps with it, are essential, and in some areas are not to the high standard that we would hope for. That would be a common view across the medical profession. My own view and hope is that the Bill should not make the situation either better or worse.”
“Q Thank you, Professor Whitty and Duncan, for being with us this morning. Professor Whitty, in October you and a number of chief medical officers published an advice note to doctors about a range of guidance on this issue. In it, you said that a couple of things are “unanimous” for medical professionals. I am focusing on the line where it says that “we must not undermine the provision of good end-of-life care for all including the outstanding work done by palliative care clinicians”. Do we take it, by implication, that you are fearful that this Bill could undermine good end-of-life care? In your view, how might we mitigate some of those risks in the Bill? Professor Whitty: I will give a view and then Duncan will be able, as chief nurse, to mention the parallel bit of advice that said similar things.”
“Dr Green: Obviously, it would be great if we worked in a system where doctors had all the time they needed to deal with their patients. I believe that the Bill mentions a duty to provide information from the chief medical officer, and having read the Bill, to me it seems very much like this might be in the form of a website or leaflet. We believe that it is important that patients should be able to access personalised information, and we would like to see an official information service that patients could go to, either as a self-referral or as a recommendation from their GPs or other doctors. That would give them information not just about assisted dying, but about all the other things that bother people at this stage of their life, and it would mention social services support and palliative care.”
“Q This might sound like playing devil’s advocate, and I fully appreciate that you do not want to reduce this to a tick-box exercise, as you described it. Some might argue that the risk of what you describe is that it creates a lottery, because you would be relying on doctors to use their personal judgment as to when to have that conversation. For example, if a patient and doctor do not have a particularly close or long-standing relationship, the doctor may not know what the signs are, so the patient, who may need to have that conversation, may never have it. The risk is that you would be reliant on good relationships forming over time and doctors using their intuition, so that some patients will have the conversations they need but others will not.”
“One of our other recommendations is that palliative and end-of-life care, as an aside to your question, is also brought into qualifying roles for people in training, such as doctors, nurses and allied health professionals, as well as social workers. We could see that happening in the future.”
“Our thoughts, at the moment, are that that would be for palliative care social workers, whether they are in charities, trusts or local authorities, or are independent, because that is where things sit with us at the moment and we know our roles. We like to think that it would roll out to other professionals, however, because assessing capacity is not specifically the role of the social worker; other professionals are able to, and do, complete capacity assessments. It is quite difficult to answer your question in terms of numbers at the moment. If we were talking specifically about palliative care social workers, we currently have around 200 members in our association, but there will be other people out there who are not members and we do not know who they are. It is a role that could expand.”
“If this new role came into effect, how long would that person need to be trained for to fulfil it adequately? Thirdly, do you have a sense of how many of these professionals we would need to make this a functioning system? Those are three separate questions. Glyn Berry: To answer the first question, we feel, for the reasons I outlined earlier, that the role of an approved palliative care professional would sit beside the role of clinicians, balancing clinical and social observation and assessment. In terms of the training, we, as social workers, already have continuous training opportunities to become best interests assessors, practice educators and approved mental health practitioners, so we envisage that the training would very much be along those lines. Doing those roles currently requires a course of training at university.”
“Q My question, which relates to some of the points made earlier, is for Glyn Berry. Your organisation has recommended a new role: the approved palliative care professional. To go into the detail a bit more, you make a number of recommendations on what that role would include, such as ensuring that the person has the mental capacity to make the decision. First, are you therefore saying that this new role should sit alongside the two-doctor process, which has already been outlined in terms of final decision making? If the approved palliative care professional felt, for example, that this person did not have mental capacity, should they be able to, as it were, stop the process? Secondly, what level of training would that person need in terms of time? We have, for example, been talking about a two-year process.”