Daniel Francis MP: speeches

Speeches

• 11 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Twenty First sitting) · Hansard source

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  I just want to confirm that either side has the right of appeal in Spain.

• 11 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Twenty First sitting) · Hansard source

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  I beg to ask leave to withdraw the amendment. Amendment, by leave , withdrawn. Amendment proposed: 410, in clause 12, page 8, line 27, leave out subsection (6). —(Juliet Campbell.) The amendment would remove the ability of the court to hear from and question any person other than the person who made the application for the declaration and the assessing doctors. Question put, That the amendment be made.

• 11 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Twenty First sitting) · Hansard source

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  Will my hon. Friend give way on that point?

• 11 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Twenty First sitting) · Hansard source

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  I am not entirely persuaded. I think there is currently a mixture of cases, and there will potentially be a mixture of cases in future. I hear what the right hon. Member says, but my primary concern is about the way things are. As I say, I am minded not to support the amendments on balance, but I am concerned that we could end up hearing stories about someone’s loved one of 50 years, or their child with a learning disability, having had an assisted death—and the first they knew about it was when it was too late.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Eighteenth sitting) · Hansard source

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  I would welcome that as a positive step forward—I think there is probably still some work to do in that regard. My hon. Friend and I will have conversations on the wording of that future amendment, but at the moment we are discussing the amendments that stand before us. Any future amendments that may be tabled are not for us currently to consider.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Eighteenth sitting) · Hansard source

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  I rise to speak to the amendments in my name—namely, new clause 12 and amendments 336, 337 and 335. Yesterday, we spoke about the evidence we received from the British Medical Association. I accept that there is some crossover between my amendments and the amendments of the Bill’s promoter, my hon. Friend the Member for Spen Valley, on training. The British Medical Association stated, with regard to my amendments: “We strongly urge MPs to support these amendments which would define the ‘training’ explicitly in the Bill as specialised training to provide assisted dying, undertaken by those who opt in…We have been vocal that the Bill should be based on an opt-in model…during the Committee’s oral evidence sessions. Reinforcing this, we believe NC12 and Amendments 335-337 would make two important aspects of this provision in the Bill clearer: 1. That providing assisted dying is not, and would not in the future, be expected of all doctors—the Bill’s current all-encompassing reference simply to ‘training’ does not preclude this training being prescribed as standard general medical training via the regulations, in which case it would apply to all doctors and make the opt-in redundant. Specifying that it is ‘specialised’ training on the face of the Bill, and making clear that there is no obligation on doctors to undergo the training, would safeguard the opt-in model in the Bill’s first principles. 2. That only those who undergo specialised, tailored training on assisted dying could provide the service – during the oral evidence sessions, there has been much discussion about the importance of specialised training for those who opt in to carry out the service. Specialised training for those providing the service is essential for doctors and provides additional protection and safeguards for patients—it should be explicitly referenced in the Bill.” We heard in our oral evidence sessions from others, including Dr Ahmedzai, on the need for training. He said: “I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 69, Q82.] I now turn to two amendments in my name: amendment 340 and amendment (a) to amendment 186. Both amendments relate to training for those with learning disabilities and autism. We had a similar discussion on a previous clause, and I know that further amendments are likely to be tabled on the matter, but as I said yesterday, they are not currently on the amendment paper. I heard and welcome what my hon. Friend the Member for Luton South and South Bedfordshire has said about amendment 20. Putting that training in the Bill is hugely important, and I believe the same is true in relation to training for those with learning disabilities and autism, as set out in to amendments 340 and amendment (a) to amendment 186, particularly given my concerns and those of others about whether we end up with clause 3 relating to the Mental Capacity Act 2005.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Eighteenth sitting) · Hansard source

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  I hear that, and I think my hon. Friend and I are on the same page on many of these matters. I think there were some drafting issues when I discussed amendments with Mencap at an earlier stage. I commend to the Committee the six amendments in my name in this group: new clause 12 and amendments 336, 337, 335, 340 and amendment (a) to amendment 186.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) · Hansard source

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  I beg to move amendment 347, in clause 7, page 4, line 4, leave out from “to” to the second “the” in line 5 and insert— “ensure that steps have been taken to confirm that”. This amendment would remove the emphasis on the role of the coordinating doctor in making these assessments.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) · Hansard source

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  I agree with my hon. Friend about the number of amendments in this vein, but clearly the amendments suggested by my hon. Friend the Member for Hackney South and Shoreditch bring us into line with existing regulations. In her evidence, Dr Cox said: “If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.] It is likely, therefore, that those diagnosed with a terminal illness will experience mental distress that could affect their capacity to make a decision about an assisted death. In her written evidence, Dr Virginia Goncalves, a retired clinical psychiatrist with over 30 years of experience in the NHS, writes: “In my consultant psychiatrist role, I have encountered many desperate and suicidal patients wanting to end their lives after struggling with longstanding mental distress, who could have easily sought the option of assisted suicide if it had been available to them! But however depressed and hopeless they felt, with a compassionate and hope filled approach from their care givers and the correct medical and psychological treatment, the vast majority recovered enough to be able to have a ‘life worth living’. In so many cases, these patients have thanked me later for not giving up on them! Not once have I heard anyone say ‘you should have let me die when I wanted to do it’.” A meeting with a psychiatrist or other psychological specialist will protect people who may otherwise not have chosen assisted dying. I emphasise again that we already ensure that patients who will donate an organ have this assessment, so why not those seeking an assisted death? We must protect vulnerable terminally ill people from being coerced into assisted death, and psychiatrists and other specialists are best placed to spot that. That is why the assessment is included for living organ donation.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) · Hansard source

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  I agree. An assessment by a specialist would protect patients and give another opportunity to spot coercion—something that we all want to safeguard against. I welcome the acceptance of amendment 20, tabled by my hon. Friend the Member for Lowestoft (Jess Asato), ensuring that doctors will be better trained to spot these issues, but that is only the start. We need the same in-depth assessment that living organ donors would get. Patients must fully understand the decision they are taking, and doctors must be convinced that they are capable of making it. For organ donation, the NHS recommends that potential donors meet a mental health professional at an early stage, particularly in cases where people have a history of mental illness. As we have already noted, those diagnosed with terminal illnesses are likely to also have mental health issues. Dr Sarah Cox, in her oral evidence, cited a study by Professor Louis Appleby, the Government’s suicide prevention adviser. Dr Cox said: “If we look at the evidence of suicide, we know that it is increased in people with serious illnesses.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) · Hansard source

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  I will not come back on anything but, obviously, I will press some of these amendments in due course. I beg to ask leave to withdraw the amendment. Amendment, by leave, withdrawn. Amendment proposed : 294, in clause 7, page 4, line 5, after “doctor” insert “based on provided evidence that”.— (Daniel Francis.) This amendment would require that the doctor bases their assessment on provided evidence. Question put, That the amendment be made.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) · Hansard source

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  I will not press amendment 347 to a vote, but I will speak to it, and to this group of amendments. First, I shall turn to amendments 14 to 19, tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), which would require a co-ordinating doctor to refer the patient to an independent psychiatrist, or someone else qualified, as decided by the Secretary of State. That practitioner would then produce a report that the co-ordinating doctor must take into account when assessing whether the person has capacity, has a clear, settled and informed wish to end their life, and has not been coerced or pressured. These amendments would replicate the existing practice of assessment for living organ donors. If we use a psychiatrist’s assessment for those who are donating an organ—a serious decision—how much more serious is this decision to end one’s life, and how much more necessary is the psychiatric assessment? It feels illogical to offer psychiatric assessments to patients who may donate organs, but not to those who may end their life. The wording of these amendments mirrors the regulations that have been applied through the Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006. For organ donation, there is a separate body—the Human Tissue Authority—which oversees the network of assessors. These amendments do not suggest a separate body for assessors in the context of assisted dying, instead suggesting that the assessor should be a registered psychiatrist or someone qualified, as decided by the Secretary of State. This ensures control over who can be an assessor while also being flexible. My hon. Friend the Member for Spen Valley, the Bill’s promoter, said in oral evidence that she had looked at the model of assessment for capacity and coercion that is used for living organ donation, so I will be interested, when we get to that point of the debate, to know why the Bill does not model its assessments on those that are already done for organ donation. These amendments would strengthen the Bill by ensuring that patients are properly assessed as having capacity to make such a huge decision and would help to spot coercion. As it stands, the Bill has no mention of the doctors giving assessments having psychiatric specialisms. These amendments would ensure that a specialist meets the patient, which is vital. We have heard already how difficult it can be to spot coercion, especially repeat coercion.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) · Hansard source

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  Absolutely. This amendment, of course, is widely supported by Committee members for that very reason. As I was saying, we already use that assessment for organ donation, and Members supporting this amendment believe that should be the case for those that are seeking an assisted death. I now move on to amendment 284, in the name of my hon. Friend the Member for York Central. This amendment would change clause 9(3). Currently, that subsection lays out, and I will quote the language of the Bill, that the assessing doctor, “(b) may, if they have doubt as to the capacity of the person being assessed, refer the person for assessment by a registered medical practitioner who is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council or who otherwise holds qualifications in or has experience of the assessment of capability;” This amendment would change the word “may” to “must”. In other words, the assessing doctor would have a duty to refer the person being assessed to a consultant psychiatrist if they had any doubt about that person’s capacity. I argue that this is a change that we both should make, and can easily make. If a doctor has doubts about the capacity of an applicant, it is good practice for them to refer that person to a doctor or a specialist in that field.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) · Hansard source

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  It is a pleasure to serve under your chairship, Mrs Harris. It would be remiss of me not to comment briefly on new clause 8, given that throughout this process I have consistently raised issues around evidence given by the Equality and Human Rights Commission, and given that new clause 8 states that before making a recommendation the Secretary of State must consult the commission. I remind hon. Members that the commission has told us that it strongly recommends that “at the earliest opportunity, Parliament is provided with further information and assurance about the bill’s compatibility with equality and human rights.” It went on to say that its concerns were that the Bill “may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability.” It has also stated: “A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity…It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005.” I welcome new clause 8, which is in the name of my hon. Friend the Member for Spen Valley, as it would ensure that the Equality and Human Rights Commission is consulted. We await its comments, which hopefully we will have before Report, on whether the concerns that it raised, both in writing before Second Reading and in their oral evidence, have been allayed. However, I welcome this initial commitment, and we will see where that brings us on Report.

• 5 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) · Hansard source

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  As my hon. Friend will know, my name is down as a supporter of amendment 6. I will get to that in due course. At the moment, I am speaking to amendment 284. I hear what my hon. Friend says—I am talking about the merits of amendment 284, but will get to amendment 6 in my closing comments. On amendment 284, if a doctor has doubts about the capacity of an applicant, it is good practice to refer that person to a doctor with specialist expertise in that field. That would be true if the doctor was assessing the capacity of a patient to take any important decision, and is surely especially true when we are talking about a decision of this importance. I accept that people will have different views on amendment 6, when we get to it, from those they hold on amendment 284. Amendment 284 would put a duty on doctors to do something that is good practice. Most doctors in most circumstances would do it anyway, but in some cases, some may not. My hon. Friend the Member for York Central, who tabled this amendment, believes that we should write this law as tightly as possible so that doctors have that duty. Amendment 294, which was tabled by my hon. Friend the Member for York Central, would require the doctor to base their assessment on provided evidence. Again, that is something that most doctors would do anyway in the extremely serious circumstances of a person’s applying for assisted death. Many laws that we consider in this House relate to things that we are familiar with and understand well; but as my hon. Friend the Member for Bradford West said last week, some laws, such as this one, concern new matters. They are about things to which we need to give due consideration, as we are doing in scrutinising the Bill, because we need to understand the issues that arise. Those laws can introduce powers that could be dangerous if not properly safeguarded. This Bill, as has been accepted, needs strong safeguards. The aim of my hon. Friend the Member for York Central in tabling this amendment was to spell out that a doctor’s assessment of someone seeking assisted dying should be based on evidence. That would make it much less likely that any doctor would not pay sufficient attention to evidence they were presented with. Lastly, as my hon. Friend the Member for Spen Valley knows, I am a long-standing of supporter amendment 6—I was in that base going into Second Reading. Alongside my concerns about clause 3, which she has heard at length, this matter was a key concern of mine going into Second Reading. I was therefore an early supporter of this amendment to change the wording around the referral from “may” to “must”. That was discussed on Second Reading. I do not want to speak for my hon. Friend, but I think she shares similar views to mine on the matter and suspect that the matter may be supported when we get to that debate.

• 4 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Seventeenth sitting) · Hansard source

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  It is a pleasure to serve under your chairmanship, Mr Dowd. I note that my hon. Friend the Member for Spen Valley has said that she is minded to accept amendment 341. I will, however, still briefly speak to amendment 338 and new clause 13, which stand in my name. The British Medical Association has said that it strongly urges MPs to support the amendments, which would remove the referral requirement in relation to preliminary discussions and establish an official body to provide factual information to patients about the range of options available to them. As the hon. Member for East Wiltshire mentioned, Dr Green, in his oral evidence, said: “The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q37.] He went on to say: “I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q40.] He also said: “The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q41.] The BMA’s position is that the proposal is analogous to doctors’ professional legal obligations regarding abortion, and consistent with the Bill’s inclusion in clause 23 of a right to refuse, for any reason, to carry out activities directly related to assisted dying. It has said: “In tandem, we believe creating an official body to provide individual information and advice to patients, to which doctors could direct (rather than refer) patients, would ensure that the doctor’s views are respected, whilst also—crucially—ensuring that patients can easily access the information and support they need. Currently, whilst the Bill acknowledges the need for accurate, impartial information and advice for patients, it gives no indication of how this might be delivered—generic published information would not be sufficient. Patients would need individual advice, guidance, and support so that they can make informed decisions, and an independent information service could meet this need.” As the hon. Member for Reigate mentioned, a member of the Royal College of General Practitioners also said: “The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 279, Q365.] He went on to say: “Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q354.] Therefore, I commend amendment 338 and new clause 13 to the Committee.

• 4 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Seventeenth sitting) · Hansard source

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  I echo the points that have been made about the importance of the initial conversations, particularly for those who do not have English as their first language. I made a commitment to my hon. Friend the Member for Ipswich that in his absence I would press amendments 414 and 415 to a Division, as he requested. I support the general principles of the amendments relating to those who are seeking or who need interpretation to explain aspects of assisted dying to them. I support the merit of that principle and the intention behind amendments 414 and 415.

• 4 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Seventeenth sitting) · Hansard source

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  Thank you for letting me speak, Mr Dowd. I will be brief. As we reach the end of our debate on clause 4, I regret some of the decisions that we have made. I welcome the fact that in due course we will discuss amendment 418, in the name of my hon. Friend the Member for Spen Valley, which also relates to the preliminary conversation. My concern remains that it is “a” preliminary conversation, not, in my determination, “the” preliminary conversation. My amendments would have meant that “the” preliminary conversation could not be held before someone is 18. As I read amendment 418, someone could have preliminary conversations before they are 18; it is just that it will be recorded that there was a preliminary conversation after they turned 18. I regret that, as clause 4 now stands, the paperwork and initial discussion must be completed after someone is 18, but that will not necessarily apply to a preliminary conversation. Equally, I have some regrets in relation to learning disability issues. I welcome the commitment from my hon. Friend the Member for Penistone and Stocksbridge on the amendment that she aims to bring forward, but I am conscious that it is not on the amendment paper for everybody to see. Just as she committed to work with me, I will continue to work with her on bringing it forward. We have debated clause 4 long and hard, but I do believe that we have a clause that has loopholes in relation to people under 18 and to people with learning disabilities and autism. I will not press it to a Division, but I regret the fact that we have reached this place. Question put and agreed to. Clause 4, as amended, accordingly ordered to stand part of the Bill. Clause 5 Initial request for assistance: first declaration

• 26 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Fifteenth sitting) · Hansard source

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  It is a pleasure to serve under your chairship, Mrs Harris. Of the three amendments in my name, I come first to amendments 319 and 320. Clause 1 outlines that the legislation relates to a terminally ill person who “is aged 18 or over at the time the person makes a first declaration”. It does not, however, refer to the age that an individual needs to be at the time of an initial discussion in line with clause 4. The definitions in the Mental Capacity Act, which have now been agreed as part of the Bill, relate to those aged 16 and over. Given that we have now accepted that, I presume that the discussions referred to in clause 4 could be held with 16 and 17-year-olds. I appreciate that there will be different views on the matter, in relation to autonomy, but I think that even some of the strongest supporters of the Bill will be uncomfortable with those conversations being undertaken with someone as soon as that person turns 16. My amendments seek to make sure that the Bill includes the strongest possible safeguards, by ensuring that the relevant aspects of the Bill relate to those who have attained the age of 18. Surely it would make sense that if a person has to be 18 to agree to the first declaration, they also have to be 18 to have the initial discussion. I now turn to amendment 339, which stands in my name. As hon. Members know, this issue has been a great preoccupation of mine on the Committee. I know that my hon. Friend the Member for Penistone and Stocksbridge wishes to comment on the matter, and I am aware that there may be concerns about some of the wording in the amendment, but it was tabled following the oral evidence we received from Mencap and was, in the initial instance, in the wording that Mencap requested. I remind hon. Members of the evidence from Mencap. Dan Scorer talked to us about two principal concerns, initially. One was about preliminary discussions, and how the initial conversation is initiated and structured is a key area that Mencap has concerns about. He said that for Mencap “that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion…For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about ‘do not resuscitate’ or ‘do not treat’ decisions, and they were not being properly prepared for or supported in those discussions.” He went on to say that Mencap wants to see “a right to advocacy included within the Bill to support people considering their end of life options.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 269, Q350.] We then move into the domain of amendment 8—tabled by my hon. Friend the Member for Blackpool South (Chris Web)—on initial discussions. As Dan Scorer told us, Mencap’s concern is about how discussions around assisted dying are initiated: “For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures. Having a doctor come to you and say, ‘What do you think about assisted dying—is that something you might want to consider?’ could move them towards or into potentially accepting a course of action that they had never considered before.” That is why he then went on to talk about advocacy supporting that discussion, saying: “Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate”. –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q355.] In concluding, he said he felt that some of that “would reduce the risk, which is absolutely there, that people could take the initiation of that discussion as a statement, ‘This is what you should do.’”. He said Mencap’s position was: “We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280, Q366.] It is no secret that my greatest concerns relate to capacity and supporting those with learning disabilities. As well as my earlier two amendments, I will press my amendment 339; I hear that there may not be a vote on it. I also want to touch on amendment 368, in the name of the right hon. Member for East Hampshire (Damian Hinds), as it also feeds into the conversation about the initial discussions. There are swathes of written evidence from the Down’s syndrome community. The written evidence supplied by Lucienne Davies from Get On Down’s states: “There is an obvious worry about informed consent for people with learning disabilities. As a group we are fully aware that people with Down syndrome are extremely vulnerable to the intentions and suggestions of caregivers, health professionals and authority figures, informed consent is therefore a major concern in end-of-life decisions.” The Down’s Syndrome Research Foundation UK also emphasised the issues that arose during the covid-19 pandemic, when “we saw a deluge of temporary changes sweep away many safeguards and rights. During the pandemic, individuals with learning disabilities, including those with Down syndrome, had a death rate of six times higher than average. It is not known how much the actions of health professionals played into this, but there are some disturbing concerns.” The Portsmouth Down Syndrome Association has listed a whole range of concerns. It says that standard practice has not been followed with this Bill. I know that the hon. Member for East Wiltshire has mentioned some of this, but the association’s evidence says: “Typically, the government recommends a 12–16-week period for public consultations to ensure comprehensive input and discussion. This Bill has not adhered to this standard, compromising the depth and quality of the consultation process. Rushing the legislative process has led to insufficient public engagement, overlooking diverse societal values and ethical viewpoints.” The evidence goes on to lay out concerns about vulnerability to coercion, challenges in assessing capacity, ethical implications, misinterpretation of wishes and an over-emphasis on disability. The all-party parliamentary group on Down syndrome has provided us with a lengthy submission. Again, I will not go into great detail on it, but it mentions expert consultation, the legal requirements and the challenges in front of us, those medical capacity considerations, the vulnerability of individuals with learning disabilities, additional complicating factors and ethical challenges, and, again, the learning disability mortality rate. My intention is to press the three amendments in my name, amendments 319, 320 and 339. I have concerns, as many people do, about the discrepancy between the wording in clause 4 and in later clauses, in relation to the age requirement of 18. I look forward to the debate on amendment 339, which relates to learning disabilities; other amendments on the topic may well come forward in due course. We have heard very clearly the concerns from the Down’s syndrome community and from Mencap about learning disability and the role of advocates, family members and carers. It is incumbent on us to listen to that advice and ensure the strongest possible safeguards for the people who are most vulnerable in this conversation. We must ensure that those safeguards are in the Bill.

• 26 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Fifteenth sitting) · Hansard source

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  The Mental Capacity Act code of practice outlines that following a court judgment, there is a separate capacity test for making a will or a gift, entering into a contract, litigating and entering into a marriage. It outlines, in paragraph 4.50, specific legal tests on top of the mental capacity assessment. Will the Minister outline why we allow separate mental capacity tests in those cases, but not in this case?

• 26 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Fifteenth sitting) · Hansard source

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  I will not speak for long. I spoke in great depth about my amendment and other amendments this morning. Over the past few weeks, hon. Members will have heard, long and hard, about where I come from on the clause stand part issue. This has been one of my greatest difficulties. It drove me to oppose the Bill on Second Reading, and I continue to have grave concerns that the Mental Capacity Act 2005 was not written for this scenario. I draw Members’ attention to my exchange with my hon. Friend the Member for Stroud this morning when, on decision making in the Mental Capacity Act, it was accepted that it has to be presumed that somebody has capacity, and in those scenarios a doctor must assist in the decision-making part of the process. My great concern—I am sure we will continue this debate when we come to clause 4—has been around people with learning disabilities, and that is where I have ended up in this place. I have said this before and I am sure I will say it again in my contributions: people may think that I have a vested interest, but actually my daughter will never have the capacity to make these kinds of decisions. I am here in this Committee because hundreds of thousands of people in this country are involved in family decisions where a child or a loved one does have enough capacity. The Mental Capacity Act was rightly written to allow them to live independently, buy a coffee and do their banking, but I do not believe it was written for this scenario, so I will support the amendments. I presume that the amendments may well be rejected. I look forward to discussing, in due course, the amendments tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), because they bring us into a scenario that does exist in the medical field, in respect of discussions with the doctor. As things stand, I will support the amendments. Unfortunately, I will oppose clause stand part simply because I continue to believe, as I did on Second Reading, that the Mental Capacity Act 2005 was not written for this scenario. Question put, That the amendment be made.

• 26 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Fifteenth sitting) · Hansard source

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  I will read paragraph 4.50 of the mental capacity code of practice: “For certain kinds of complex decisions (for example, making a will)”— and the others I have just mentioned— “there are specific legal tests…in addition to the two-stage test for capacity.” It already exists within our law; for other tests, there is an additional test.

• 26 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Fourteenth sitting) · Hansard source

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  In the evidence from Mencap and in large swathes of the written evidence, we have heard grave concerns from communities representing people with learning disabilities about how this legislation was enacted during covid, particularly with “do not resuscitate” notices. Evidence shows that people with learning disabilities were far more likely to have those placed on them. The written evidence we have suggests that that is due to a misinterpretation of the Mental Capacity Act or bias within the medical community. Can my hon. Friend comment on that?

• 26 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Fourteenth sitting) · Hansard source

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  It is a pleasure to serve under your chairmanship, Mr Dowd. I accept that we had a long debate on issues relating to mental capacity in respect of the amendments tabled by the hon. Member for Richmond Park, but we heard in oral evidence significant representations and concerns regarding how the Mental Capacity Act 2005 would work in connection with assisted dying. The purpose of the amendment is to reverse the burden of proof in relation to capacity. In general—rightly, as I have said previously—a person is assumed to have capacity unless it is shown that they do not. As we have heard, that is a deliberately low bar in order to preserve the basic human right to participate in society and to ensure that normal daily life does not require us all to prove that we have capacity every time we make a decision. The downside of that assumption, however, is that in situations of limited or unreliable evidence, or a very borderline case, the person has to be assumed to have capacity. It is surely clear that that could put many people into real danger if such an approach were taken with assisted dying. We should not be afraid to say that a person who is terminally ill is potentially vulnerable. Depression and stress are common and understandable responses to a terminal diagnosis and, whether we like it or not, some people in our society will prey on the fragile for their own gain. Our job is to confront the risk of someone being given access to an assisted death not because that is their considered wish, but because no conclusive evidence is available to the doctors at the time of the assessment, or because someone is controlling or coercing that person and able to persuade them in favour of an assisted death that they do not truly want by hiding any signs of their impaired capacity until it is too late. On previous amendments, I have spoken from my personal perspective. As parents of a child with a learning disability, our greatest concern is what will happen to our child after we have gone. That is the principal thing—the sole thing, I think—that keeps my wife and me up in the night: what will be that determination for our daughter one day? I hope that her twin will remain with her, and that her twin will be the person who makes those decisions for her, but that may of course not be the case. I know that we may have to entrust the state or others to make those determinations for her in due course. Every parent of a child with a learning disability considers that determination every day. I know that it weighs on their minds not only in connection with this clause; the decisions about their child will also weigh on their minds when we get to clause 4. I am not talking about my daughter’s case, because she does not have enough capacity, but for those people who do have enough capacity—we know from the evidence that the majority of people with a learning disability do have enough capacity—the decisions that may be made for them in due course will weigh on their minds. In those circumstances, I suggest it is appropriate and reasonable that the assisted dying process maintains the other principles of the Mental Capacity Act, but reverses the presumption in favour of capacity in order to keep people safe. We have heard that doctors are familiar with the Act, including in cases where people sometimes do and sometimes do not have capacity. On that basis, it is not a great leap for them to look for evidence that a person does have capacity, rather than the opposite. That is a normal exercise of their judgment. It is a compassionate and common-sense approach. I remind Members of what I have said previously about the position of the Law Society: the issue of what capacity should mean, and how to assess it, is central to the Bill. The Law Society considers that the Bill should be clearer in its approach to capacity for the purposes of ending a terminally ill person’s life. Although expert opinion may reasonably differ on whether to use the Mental Capacity Act approach or to introduce a stand-alone definition, the utmost clarity is required if the Bill’s safeguards are to be robust and effective. The Law Society’s recommendation is that before the clause becomes law, a comprehensive consultation should be undertaken to allow relevant experts to share views on the appropriate definition of capacity for the purpose of the Bill. I will not quote everything again—I have quoted it all previously—but we have heard oral evidence on this matter, including concerns about how the Mental Capacity Act may be interpreted, from Professor House, through Baroness Falkner, Fazilet Hadi, Dr Hussain, Chelsea Roff, Professor Owen and Dr Price, to Dan Scorer of Mencap. My amendment is a compassionate and common-sense approach that would provide reassurance to members of the public. I invite the Committee to support it. Amendment 398, tabled by the hon. Member for Reigate, goes further than my amendment, and beyond its scope, but I have some sympathy with it. I will repeat some of what I have said previously, in that I remind the Committee of the statutory principles of the Mental Capacity Act: “A person must be assumed to have capacity unless it is established that he lacks capacity…A person is not to be treated as unable to make a decision unless all practicable steps”— that remains a grave concern of mine— “to help him to do so have been taken without success”, and a person “is not to be treated as unable to make a decision merely because he makes an unwise decision.” I remain happy to stand corrected, as I have continued to ask for clarification on this matter, but my point that doctors or other professionals would have to take all practical steps to help them to make a decision related to assisted death has not been challenged. The matter was clearly considered to some degree previously, given that clause 62 of the Mental Capacity Act 2005 states: “For the avoidance of doubt, it is hereby declared that nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961…(assisting suicide).” I also challenge whether the Bill’s authors have considered all the scenarios outlined in chapter 3 of the Mental Capacity Act code of practice, entitled “How should people be helped to make their own decisions?”, and particularly those relating to the involvement of family members and carers. Similarly, in chapter 4, “How does the Act define a person’s capacity to make a decision and how should capacity be assessed?”, the code states at paragraph 4.50: “For certain kinds of complex decisions (for example, making a will), there are specific legal tests…in addition to the two-stage test for capacity.” Those tests are laid out, but they do not include this scenario. As I did yesterday, I refer to the Equality and Human Rights Commission paper provided to Members in advance of Second Reading: “A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity in the context of a decision of this nature and gravity. It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005. Sensitive consideration must be given, in particular, to the interaction between mental capacity, mental health issues, learning disabilities and conditions such as autism. Clause 30 of the bill states that the Secretary of State ‘may’ issue codes of practice…However, it does not oblige them to do so.” For those reasons, I remain concerned about continuing to use the full definition under the Mental Capacity Act 2005. I therefore commend the amendment to the Committee.

• 26 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Fourteenth sitting) · Hansard source

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  I beg to move amendment 322, in clause 3, page 2, line 13, at end insert— “except that— (a) for the purposes of an assessment of capacity under this Act, a person must be assumed not to have capacity unless it is established they do have capacity, and (b) section 1(3) of the Mental Capacity Act 2005 shall not apply.” This amendment reverses the burden of proof in the Mental Capacity Act, so that those assessing a person’s capacity would not be able to assume that the person has capacity without evidence.