PARLIAMENTARY DEBATE
Terminally Ill Adults (End of Life) Bill (Eighth sitting) - 11 February 2025 (Commons/Public Bill Committees)
Debate Detail
Chair(s) Peter Dowd, Clive Efford, Sir Roger Gale, Carolyn Harris, † Esther McVey
Members† Abbott, Jack (Ipswich) (Lab/Co-op)
† Atkinson, Lewis (Sunderland Central) (Lab)
† Campbell, Juliet (Broxtowe) (Lab)
† Charalambous, Bambos (Southgate and Wood Green) (Lab)
† Francis, Daniel (Bexleyheath and Crayford) (Lab)
† Gordon, Tom (Harrogate and Knaresborough) (LD)
† Green, Sarah (Chesham and Amersham) (LD)
† Hopkins, Rachel (Luton South and South Bedfordshire) (Lab)
† Joseph, Sojan (Ashford) (Lab)
† Kinnock, Stephen (Minister for Care)
† Kruger, Danny (East Wiltshire) (Con)
† Leadbeater, Kim (Spen Valley) (Lab)
† Malthouse, Kit (North West Hampshire) (Con)
† Olney, Sarah (Richmond Park) (LD)
† Opher, Dr Simon (Stroud) (Lab)
† Paul, Rebecca (Reigate) (Con)
† Richards, Jake (Rother Valley) (Lab)
† Sackman, Sarah (Minister of State, Ministry of Justice)
† Saville Roberts, Liz (Dwyfor Meirionnydd) (PC)
† Shah, Naz (Bradford West) (Lab)
† Shastri-Hurst, Dr Neil (Solihull West and Shirley) (Con)
† Tidball, Dr Marie (Penistone and Stocksbridge) (Lab)
† Woodcock, Sean (Banbury) (Lab)
ClerksLynn Gardner, Lucinda Maer, Jonathan Whiffing, Committee Clerks
† attended the Committee
Public Bill CommitteeTuesday 11 February 2025
(Morning)
[Esther McVey in the Chair]
Terminally Ill Adults (End of Life) Bill
I remind the Committee that a Member who has put their name to the lead amendment in a group is called first or, in the case of a stand part debate, the Member in charge, Kim Leadbeater, will be called to speak first. Other Members are then free to indicate that they wish to speak in the debate by bobbing. At the end of the debate on a group of amendments and new clauses and schedules, I shall call the Member who moved the lead amendment or new clause again. Before they sit down, they will need to indicate whether they wish to withdraw the amendment or the new clause, or to seek a decision. If any Member wishes to press any other amendment—including any of the grouped new clauses and schedules—to a vote, they need to let me know. I shall use my discretion to decide whether to allow a separate stand part debate on individual clauses and schedules following the debate on relevant amendments.
I hope that explanation is helpful. If any Member wishes to make a declaration of interest, they can do so now.
I find it difficult to believe that any member of the Committee has been able to read all the evidence submitted since last Tuesday. For instance, the written evidence submitted by the chief executive of my local hospice, which she blind-copied me into on 20 January, was available for members of this Committee to read on 7 February, 17 days after she submitted it. That suggests that, as well as Members struggling to keep up, the Clerks are struggling to keep up. Given the sheer volume of evidence, we will not be able to consider it fully before line-by-line scrutiny.
I therefore seek your advice, Ms McVey, on how we can reasonably expected to begin line-by-line scrutiny when in the last week we have been presented with more than 400 documents, in addition to new amendments.
Nevertheless, further to the points made by hon. Members, last night we heard through the media that a very substantial change to the Bill will be introduced. We have not yet seen those amendments proposed by the hon. Member for Spen Valley, but we look forward to doing so. This goes to the same point: we are being asked to start line-by-line scrutiny today of a Bill with a huge amount of evidence that we have not yet been able to digest. Furthermore, substantial changes to the Bill that we voted on at Second Reading are being tabled. I appreciate that the process allows amendments to be tabled at any time through the course of the Bill as long as the clause is still ahead. Nevertheless, I value your guidance on whether it might be appropriate to seek an Adjournment so that we can consider the additional evidence, but also allow the hon. Member for Spen Valley to table her amendments, which change the whole scope of the Bill as voted on at Second Reading.
It is worth also pointing out to Members that the Bill Committee is not the end of the process, and written evidence that will arrive throughout will be pertinent on Report, when the whole House will have that information available. Then members of the Committee can lead the debate and reflect on information or written evidence that has emerged even after Committee stage, once the completed Bill from that process is seen. It is perfectly possible for this to evolve as we get to Report and Third Reading in the light of evidence that arrives. That is the normal process through which all legislation goes.
Clause 1
Assisted dying
This amendment provides that only persons in England or Wales may be provided with assistance in accordance with the Bill.
Amendment 179, in clause 1, page 1, line 13, after “provided” insert “in England or Wales”.
This amendment limits the assistance that may be provided in accordance with the Bill to assistance in England or Wales.
Amendment 180, in clause 1, page 1, line 20, at end insert—
“(3) The steps to be taken under sections 5, 7, 8 and 13 must be taken—
(a) when the terminally ill person is in England or Wales, and
(b) in the case of the steps under sections 7 and 8, by persons in England or Wales.”
This amendment provides that steps under clauses 5, 7, 8 and 13 must be taken by and in respect of persons in England or Wales.
Amendment 182, in clause 4, page 2, line 21, after “person” insert “in England or Wales”.
This amendment limits subsection (3) to cases where the person is in England or Wales.
Amendment 193, in clause 7, page 4, line 8, at end insert—
“(ca) is in England and Wales,”.
This amendment, which is consequential on Amendment 178, provides that the coordinating doctor must ascertain whether, in their opinion, the person who made the first declaration is in England and Wales.
We are discussing assisted dying for terminally ill adults who have a clear, settled and informed wish to end their own life, and who have not been subjected to coercion or pressure from anybody else to do so. These are very serious matters and deserve serious consideration, which is why I was determined that this Bill should have an unprecedented level of scrutiny. We have heard from a range of over 50 witnesses with differing views on the Bill and have received written evidence from many, many more.
I am grateful to everyone who has contributed in such a thoughtful and constructive way. It has been widely remarked—and I wholeheartedly agree—that the Second Reading debate on 29 November last year, when the House approved the principle of the Bill by a majority of 55, showed Parliament at its best. I hope and believe that this Committee, as it goes through the Bill line by line, will do so in the same considered, respectful and measured manner.
I hope and believe that the Committee will take the same considered, respectful approach that we have taken previously. We have been asked by the House to look at where the Bill can be improved and to amend it, so that Parliament can be presented with a piece of legislation that is robust and workable in order to meet the objectives it is designed to achieve. Most—if not all—the amendments tabled in my name, have been drafted with the help of parliamentary counsel and officials in both the Department of Health and Social Care and the Ministry of Justice. The Government are committed to making the Bill workable and operable, while maintaining a position of neutrality.
I am grateful for the tremendous hard work that has gone into this to make a well-drafted Bill even better. I know the Ministers on the Committee, although remaining neutral, will be here to explain, where necessary, why some drafting amendments were needed to meet their duty to the statute book. There is an old adage that says too many cooks spoil the broth. That may not exactly be parliamentary language, but we will have to bear it in mind as we go along. Over 300 amendments have been tabled—most of them with the intention of improving and strengthening the Bill. I thank all MPs, whether members of the Committee or not, for the time and effort they have put in.
We have a responsibility to maintain the integrity and coherence of the Bill as a whole, so it is evident that we will not be able to accept all amendments. Indeed, we may find ourselves rejecting amendments that sound entirely reasonable in themselves and that undoubtedly come from a good place, but that are perhaps better addressed elsewhere in the drafting. Others might have unintended consequences or create a degree of ambiguity or uncertainty that could undermine the legal authority of the legislation. That might be very good for the pockets of lawyers, but it does not make for good law.
Amendments 178 to 180, 182 and 193 simply clarify that only persons in England and Wales may be provided with assistance in accordance with the Act, and only medical practitioners in England and Wales can carry out the required roles at each stage of the process. Hopefully, this is a nice straightforward one to get us started.
To that end, we have been working closely with the hon. Member for Spen Valley and, where changes have been mutually agreed on by herself and the Government, we will offer a technical, factual explanation for the amendments. Therefore, I will not be offering up a Government view on the merits of any proposed changes put forward by other Members, but I will make brief remarks on an amendment’s legal and practical impact to assist Members in undertaking line-by-line scrutiny.
The amendments that we are now debating have been tabled by my hon. Friend the Member for Spen Valley in consultation with the Government. They relate to the location of the person seeking assistance under the Bill and are designed to ensure that the service can only be accessed by an individual present in England and Wales, with a view to preventing medical tourism.
I will take the amendments in turn. Amendments 178 and 193 would ensure that only a terminally ill person in England or Wales may be provided with assistance in accordance with the Bill. Further to that, a requirement is placed on the co-ordinating doctor to ascertain whether, in their opinion, the person who made the first declaration is in England and Wales as part of their first assessment. Amendment 179 would limit the assistance that may be provided in accordance with the Bill to assistance in England or Wales only. Amendment 180 would require the steps taken under clauses 5, 7, 8 and 13 that relate to both declarations and both doctors’ assessments to be taken by persons in England or Wales.
Amendment 182 would limit the provision of clause 4(3), where a person indicates to a registered medical practitioner their wish to seek assistance to end their own life, to cases where the person is physically present in England or Wales. It would prevent people who are outside of England or Wales from accessing assistance in accordance with the Act—for example, by online consultations from abroad.
As I said earlier, the Government will continue to remain neutral on the substantive policy questions relevant to how the law in this area could be changed. That is, as I have made clear, a matter for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to Members in considering the Bill and the amendments tabled by my hon. Friend the Member for Spen Valley.
Amendment 178 agreed to.
This replaces the concept of capacity based on the Mental Capacity Act and replaces it with a new concept of ability which is defined in NC1.
Amendment 36, in clause 7, page 4, line 7, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 37, in clause 8, page 4, line 34, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 38, in clause 9, page 6, line 27, leave out “capacity” and insert “ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 202, in clause 9, page 6, line 31, leave out “capability” and insert “capacity”.
This amendment corrects a typographical error.
Amendment 39, in clause 9, page 6, line 31, leave out “capability” and insert “ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 40, in clause 12, page 8, line 2, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 41, in clause 13, page 9, line 31, leave out “capacity” and insert “ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 42, in clause 18, page 12, line 23, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 43, in clause 30, page 18, line 16, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 44, in clause 40, page 23, line 26, leave out from “capacity” and insert “ability”.
This amendment is consequential on Amendment 34 and NC1.
New clause 1—Ability to make decision—
“The person is to be considered as having the ability to make a decision to request assistance to end their life if they can fully understand, use and weigh the relevant information in accordance with regulations made by the Secretary of State under affirmative resolution.”
This new clause defines the concept of ability which is intended to replace the concept of capacity. This new clause is intended to replace clause 3.
Amendment 45, to schedule 2, page 26, line 36, leave out “capacity” and insert “the ability to make a decision”.
Amendment 46, to schedule 3, page 28, line 1, leave out “capacity” and insert “the ability to make a decision”.
Amendment 47, to schedule 5, page 30, line 14, leave out “capacity” and insert “the ability to make a decision”.
“has the capacity to make a decision to end their own life”
as is stated in clause 1(1)(a). I believe that the word “capacity” in this context is potentially difficult to define. I note that in clause 3, all reference to mental capacity is assumed to refer to the Mental Capacity Act 2005, but I do not believe that that is sufficient for the purposes of the Bill. We heard plenty of voices to support my point of view during the oral evidence, so I want to reflect on that.
I think there are four separate concerns about using the Mental Capacity Act 2005 to judge capacity. The Royal College of Psychiatrists submitted its original written evidence in January, which we have all had sight of, and it said:
“Under the Bill as introduced, a person with a co-occurring mental disorder that is impacting their wish to end their own life would not necessarily be deemed ineligible; only those whose mental disorder was deemed to impair their capacity to make a decision to end their own life would be excluded.”
That means that an individual could have a terminal illness and also separately have a mental illness, such as depression; that would affect their ability to make a decision as to whether that terminal illness was sufficient for them to ask for assistance with dying.
If they are only partially able to do so, they will still be considered to have capacity under the Mental Capacity Act, so it is not a safeguard to protect a terminally ill person who happens to be suicidal due to depression. That is not just a hypothetical issue; in a 2015 Court of Protection case, a woman with a personality disorder refused lifesaving dialysis treatment, and the doctors felt that her personality disorder affected her decision, but the court held that she none the less had the capacity to make that decision, even though it would result in her death. Under the Bill, a patient in the same position could opt for assisted dying and the Mental Capacity Act would not protect them. I am not sure that is acceptable to Members of this House when they are considering the Bill.
New clause 1 would replace the notion of capacity with a test of ability. The definition is based on the functional test in section 3 of the Mental Capacity Act, but would require that the person was able to
The addition of “fully” means that, in the case of impaired ability, the person would not be considered to pass the test. This means that a terminally ill patient with a co-occurring mental health condition that affects their judgment would not be eligible for assisted dying
During oral evidence, the hon. Member for Spen Valley said that the intended beneficiaries of the law
However, as drafted, the Bill offers little protection to a terminally ill person who happens to be suicidal. In my view, it should protect them, and I strongly suspect that is something that the vast majority of colleagues who supported the Bill on Second Reading think is already in the Bill. The Mental Capacity Act also includes the presumption of capacity, which is really important, and it says:
It must therefore be proven that somebody lacks capacity.
It was interesting to reflect on the oral and written evidence we received on this issue. Professor Sir Chris Whitty, the chief medical officer, stated in his oral evidence:
“Issues…around mental capacity…are dealt with every day…every doctor and nurse above a certain level of seniority should be able to do that normally. It may require some slight adjustment.”
He acknowledged that
“the more serious the decision, the greater the level of capacity that someone needs to have.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q13.]
However, the Royal College of Psychiatrists said that
“an assessment of a person’s mental capacity to decide to end their own life is an entirely different and more complex determination requiring a higher level of understanding.”
I was unable to put my question to Alex Ruck Keene KC during the oral evidence session, but he kindly agreed to give further evidence in writing in response to a letter I sent to him later that day. That exchange of letters has been published as written evidence. It was his position that, in actual fact, Professor Sir Chris Whitty misinterpreted the Mental Capacity Act when he gave evidence. There is no such requirement in the Mental Capacity Act that states that the more serious the decision, the greater the level of capacity that someone needs to have. Mr Ruck Keene’s view is that that was the common law prior to the Mental Capacity Act coming into force, whereas in actual fact the Mental Capacity Act does not require that the more serious the decision, the more capacity someone needs to be judged to have.
The hon. Member for Stroud, who is a GP, says that it is always obvious to him when there are issues about capacity. I assume he might think the same about coercion. I wonder if the hon. Lady is aware that one in six older people are subject to abuse—elder abuse. Does she think that the hon. Member for Stroud always spots the one in six of his older patients who are subject to abuse?
When assessing people’s ability to make the decision, we want to take into account their ability to understand, retain, use and weigh information, and to communicate the decision. That will still be at the heart of an assessment of whether an individual is making the decision for the right reasons. A whole range of things might affect a person’s ability to make the decision. I have mentioned many times mental disorders such as depression, which is more common in people nearing the end of their life. Delirium, which is common in people with advanced illnesses, needs to be assessed. There is the complexity of people who have a physical terminal illness alongside a mental disorder; I think particularly of people suffering from an eating disorder, which is primarily a mental health condition but clearly has physical health implications. If the mental health condition is not treated or is resistant to treatment, the physical manifestation of the eating disorder can quickly become a terminal illness. That is a really important point that we need to reflect on.
The feelings of hopelessness that may come alongside a diagnosis of terminal illness may affect a person’s ability to weigh information. Anxiety can amplify their fears of future suffering, and types and doses of medication can affect capacity. All sorts of people can suffer vulnerabilities from external factors such as the lack of realistic alternatives like palliative care services; overt or implicit coercion; personal losses including bereavement; poor housing; financial hardship; and loneliness and social isolation. Understanding and responding to those vulnerabilities is at the centre of suicide prevention, but absent from the Bill.
We have to remember that the Bill would apply to people who are said to be within months of death but may not be, to those who may die within months but otherwise have a very good quality of life, and to people whose trajectories to death vary greatly. In his written evidence, Professor Allan House states that
“careful inquiry is justified because a statement about wanting to end one’s life cannot be simply taken as the result of a straightforward rational decision to choose one type of end of life care over others. Simply checking mental capacity and asking about coercion is not adequate.”
“is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of”
for decisions relating to assisted dying or assisted suicide—
“and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.”
I believe that what the Royal College of Psychiatrists means by “novel context” is that no legislation of this type has been framed before and we do not have any precedent to guide us in terms of what an appropriate determination of capacity might be.
The Bill also fails to consider that there may be a risk of assessor bias—that sometimes it may well be that a doctor who makes an assessment may well have their own views about the suitability of assisted dying as an option for that particular patient. They may be in favour of it, or they may be against it. If that were to sway them towards making an assessment against capacity, that could have lots of serious implications for the patient.
I have proposed amendment 34 because I think it is the best way forward at this stage, given the variety of evidence we have had and the real difficulty for us in this room of making an appropriate determination of the extent to which the Mental Capacity Act’s use may be modified for this purpose, or of coming up with something entirely new. I think the best way forward is to give the power to the Government—to the Secretary of State—to define the term “ability” in relation to this legislation at a later date.
Secondly, the term “ability”, unlike mental capacity, is not an existing concept in law that we can draw upon in the context of complex medical decision making about consent to medical treatment. I therefore do not accept that it is a low bar.
To replace the established concept of mental capacity with “ability” would create more problems than it seeks to solve, and is not underpinned by a clear statutory basis. Furthermore, the language the hon. Lady uses in her new clause 1 only echoes the wording of the second leg of the two-stage test in the MCA, in its language of fully understanding, using and weighing the relevant information. It does not, however, have the scaffolding and clarity of the five principles set out in the Mental Capacity Act, and it is a pale imitation of the second stage of the test of capacity, which is already in section 3 of the MCA.
Thirdly, the use and application of the Mental Capacity Act has been applied and litigated upon in our court system over the last 20 years, further nuancing its application in complex medical decision making and explicating, for example, the five principles in the MCA and the subsequent two-stage test for capacity. Contrary to what colleagues on the Opposition Benches have said already, it is used in cases where treatment is withdrawn. It is important to understand that in those circumstances, such withdrawal is not seen as an omission; it is seen as a deliberate act. It is therefore analogous to the usage in the Bill as proposed.
Fourthly, I have deep concerns that the use of the term “ability” and the concept expounded in new clause 1 imports an ableist approach, which I do not welcome, as someone who has worked in disability rights and policy for more than a decade and a half.
To return to my first argument, about the familiarity and usage of the Mental Capacity Act by medical practitioners, clinicians and the wider social care profession for two decades, many family members will be familiar with the term and used to using it as part of the wider care of people with learning disabilities, autism and mental health problems. The boundaries of those who are familiar with the concept go well beyond the walls of only medical practitioners.
In oral evidence, chief medical officer Professor Chris Whitty stated that the Mental Capacity Act
“is used up and down the country by doctors and nurses every day; they know it and they understand it. Although…it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, ‘Does this person have capacity?’, in almost all cases you will get six or seven identical answers, because people are used to using it.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.]
To unleash the tiger of an unknown and untested concept of ability into a Bill that would benefit better from the well understood, measured and principled approach of the Mental Capacity Act 2005 does not best serve the patients that I know the hon. Member for Richmond Park seeks so carefully to protect. It is therefore worth laying out the paradigm that underpins the MCA and the principles it legislates for, and why it is so important to retain this at the heart of the Bill.
The presumption of capacity in the Mental Capacity Act exists because it is considered a fundamental principle of respecting individual autonomy, meaning that every adult is assumed to have the ability to make their own decisions unless there is clear evidence proving otherwise. This protects against unnecessary interference in people’s lives and ensures that they are treated with dignity and respect, even if they may have a disability or medical condition that could potentially impact their decision-making abilities.
I want also to reflect on the robust language in clause 2(3), which states:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health Act 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
That provision, the tightly drawn limit on the need for the person’s terminal illness to leave them with only six months to live, and the third stage of the test—using the Mental Capacity Act to understand their decision making—mean that we have a strong set of safeguards.
Importantly, the MCA’s two-stage capacity test is already underpinned by robust safeguards, which address exactly the issue the hon. Gentleman raised. Stage one asks whether there is a disturbance or impairment in the person’s brain or mind, and stage two asks whether the disturbance or impairment is severe enough that the person cannot make a specific decision. That two-stage test already deals with the issue he raised. The references to the Mental Capacity Act in the relevant clauses of the Bill ensure, crucially, that we import that test too.
Elements of the language in the new concept of ability proposed by the hon. Member for Richmond Park appear to attempt to echo the second stage of the Mental Capacity Act test, as just described. That has four elements: understanding information about the decision to be made, retaining that information in the mind, using or weighing that information as part of the decision-making process, and communicating the decision by talking, using sign language or any other means. It is important to say that those core elements are built on the scaffolding of the five principles of the MCA, working in a progressive way.
Opposition Members talked about the unwise decision, but the principles in the Mental Capacity Act work collectively and cumulatively together. That is only one step, then, which is followed by the fact that decisions must be taken in the person’s best interest, and there is well-worn and well-trodden understanding of how we ascertain that. It is important that those things all work together. The issue is already addressed under the MCA; if we do away with the MCA, we lose not only the scaffolding of the five principles, but the important safeguards of the two-stage test.
The concept set out by the hon. Member for Richmond Park is the bare bones of what is needed in the complex decision making required across various stages of the Bill. In such decision making, the MCA has a wide and well-used toolkit to determine capacity. That leads to my third point. The Mental Capacity Act has been applied and litigated in our court system over the past 20 years. The chief medical officer, Professor Sir Chris Whitty, said in his evidence that the Act
“has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.]
He continued later:
“If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 36, Q14.]
I do not see sufficient clarity in the hon. Lady’s concept as set out in the amendment.
At a later evidence session, Yogi Amin, a solicitor and partner at Irwin Mitchell, augmented Sir Chris Whitty’s argument by saying:
“I wholly recommend and support the idea…to defer to the Mental Capacity Act for capacity assessments. I have been working in this area for over 20 years, before and after the Mental Capacity Act came in, and I have done cases all the way up to the Supreme Court, as well as day-to-day different cases around the country. It is well understood how capacity assessments are done, and it is ingrained into the practice of practitioners generally and of legal practitioners in the courts.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 140, Q176.]
He continued:
“It is a well settled and understood approach to the law, and producing a new one would throw up a whole new conundrum, where people would be questioning how to approach it, etc. It is not broken—it works well.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 141, Q177.]
Finally, for further clarity, I will vote against the amendment because of the ableist assumption in both language and concept. Ableist language assumes that disabled people are inferior to non-disabled people and perpetuates deficit discourses about such groups. I believe that this does not take the approach that we see in the paradigm of the Mental Capacity Act, which puts disabled people’s choices, autonomy and control over their choices at the heart of this legislation.
In my view, the amendments would only lead to abandoning the well-established principles codified within the Mental Capacity Act. They would introduce a degree of woolliness and legal uncertainty by introducing of a new term that is, as yet, undefined. That would make the operability of the Bill so much harder and would move us away from the Mental Capacity Act, which has a heritage of some 20 years and is already well established in the use of advance directives around organ transplantation, the withdrawal of treatment and the decision to undergo major operations that can have life-changing or life-limiting consequences.
“The person is to be considered as having the ability to make a decision to request assistance to end their life if they can fully understand, use and weigh the relevant information”.
It uses the language of the Mental Capacity Act on understanding and weighing information. The key distinction is that it does not allow for impaired judgment; it requires somebody fully to understand the information in front of them. It is very straightforward, and I do not think that it would be difficult to apply. Does my hon. Friend recognise that the terms are pretty clearly laid out?
There is also the two-stage test, which determines both the functional ability to make the decision and whether that decision is impaired in any way. It would be an oversimplification to suggest that the provision as drafted would deal with those issues in a satisfactory way that would provide confidence not only—although most importantly—to those who are making a decision around an assisted death, but to the medical practitioners who are part of the process and the courts, which will have to grapple with the issues that will inevitably arise from a new definition.
I should also mention that the Mental Capacity Act allows the capability of individuals to make an advance directive. Where they have capacity at a point in time to make a decision for a future date, capacity can be inferred at that future date for that decision. That is acknowledged within the 2005 Act.
There is an argument that, if an individual with an advance directive has gone through the two-stage test in the Bill and then loses capacity, the advance directive should hold weight. My new clause 6 would deal with that point. Sections 27 to 29 of the Mental Capacity Act deal with exclusions from advance directives, including issues around voting rights, marriage rights and Mental Health Act implications. There may be a mechanism, for example, to exclude an advance directive that deals with assisted death, either through the Bill or through an amendment to the Mental Capacity Act. But I do not disagree with the hon. Lady; she raises an interesting point.
The MCA is a tried and tested piece of legislation used by practitioners up and down the country. The hon. Member for Stroud uses it every day in his practice; I have to say that I did not, but I was not consenting patients for surgery every day. Every time I did so, however, I had those conversations. Capacity lies on a spectrum: if I am doing major abdominal surgery, the level of capacity required to make a decision will be much greater than if I am removing a small bump or lump on an arm.
As well as having been tried and tested by medical practitioners, the MCA has been tested in the courts, as the hon. Member for Penistone and Stocksbridge said. It has been right up to the highest court in this land, it has been robustly tested and it has been found to be good legislation. The risk we now face is that it will be replaced not only with a new legal concept, but with an entirely different process for assessing capacity in this setting. Although there may be good intentions to improve the system, that will only add to the folly of it and overcomplicate the issue.
“The coordinating doctor must be satisfied, at the time the approved substance is provided, that the person to whom it is provided…has capacity…has a clear, settled and informed wish to end their own life”.
Of course, under the wording of section 26(1) of the Mental Capacity Act, that decision can be made at an earlier time and deemed to have currency, once capacity has been lost, for its enactment at a later date. I think that there could be a minor tightening of the wording or reassurances from Government to address that, but it is an important point to raise and air.
According to what we have heard this morning, if someone has the mental capacity to use the MCA to withdraw treatment for a condition, that will lead to a diagnosis of terminal illness. It could kill someone. If I refused to take insulin, and I was diabetic, I would have the mental capacity to say, “Actually, I’m not going to take this treatment, so can I make a decision?” I am just trying to check the hon. Gentleman’s understanding.
The question of what is and is not a terminal illness is quite contested; it is not clearcut. As the hon. Member for Bradford West says, it is quite possible that diabetes could be a terminal illness if someone refuses treatment for it. I am not entirely clear why the hon. Member for Solihull West and Shirley is saying that it is clear from the legislation what is and is not a terminal illness. As we heard in oral evidence, it is not clear.
“may, if they have doubt as to…capacity…refer the person for assessment”
of their capacity by a psychiatrist. Does that reassure the hon. Member that there is a further layer of safeguards in this area?
I am cautious about introducing this new test. I may not have persuaded everyone, but I have set out my reasons. We risk making the system overcomplicated. We would move away from the well-established mechanism under the Mental Capacity Act and into tiger country, with untried and untested systems that the courts have not considered, which will inevitably lead to challenge. There is no need to do that, because we already have robust mechanisms in place and doing so will merely lead to ambiguity and potential complications.
This is not me reaching this conclusion in isolation. Of course, there will always be voices on different sides of the debate, and we can frame the evidence we have heard to favour one set of arguments over another. However, I am significantly persuaded by the chief medical officer, given his wide experience as not just a clinician but a public policymaker. In his evidence to the Committee on 28 January, he said:
“It is not clear to me what problem people are trying to solve by doing that,”
—he means moving away from the Mental Capacity Act—
“given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q14.]
It is that foundation that we are building on, and it is central to how these things operate in practice.
Although I understand the position of the hon. Member for Richmond Park, and I have a degree of sympathy with those who support the amendments, I invite them to reflect, in the time we have left for this debate, on whether the amendments achieve their stated aim. Do they make the Bill better or do they make it more complicated and convoluted? I say that they make it more convoluted and that, despite the best of intentions, they should not be supported.
My daughter has 12 words and a severe sight impairment, which makes it very difficult for her to make some of her decisions, as well as other complexities—predominantly her cerebral palsy, which caused a brain injury at birth. Therefore, in my own way, although I am not a lawyer or a doctor, I have become a bit of an expert on some of the capacity issues that people encounter day by day. This morning, as I do most mornings, I read to her the three choices for her breakfast. I give her a bit of time to think about them and then I repeat them. We get yes or no to those three choices, and that is the choice she makes. Because of her severe sight impairment, when I put those three options in front of her, I have to lift them up in front of my face so that she can see them; if I put them much lower down, she would not be able to see them and make a choice. She would be able to make the choice through pointing if it was within a certain range.
I have doctors calling my wife and me all the time, asking to have a conversation with my daughter, despite their having read the notes saying that she is an 11-year-old with 12 words and a severe sight impairment. I therefore query—I will refer to some of the oral evidence in a moment—how well some aspects of the Mental Capacity Act are currently being carried out. Equally, I deal with people who suggest that she has a greater level of capacity than she does.
I accept—I have had this conversation with the hon. Member for Spen Valley on a number of occasions—that this legislation would not be applicable to my daughter. However, we heard in evidence from Mencap that the vast majority of people with learning disabilities in this country are not in the same position. They are living their day-to-day lives, living in supported accommodation and making the kinds of decision we have discussed in this debate, such as buying coffee and going to the bank.
As a result of my 20 years as a councillor, and in the last 11 years since our children were born, I have become involved with a number of local disability charities, and I know the decisions that people make when their child is at that transition age. They are trying to understand the complexity of taking a power of attorney for a child, as well as other decision-making issues. I spend a lot of time with parents who do not put those measures in place, because they do not understand the complexity in terms of age. We could therefore have a young adult relying on doctors who do not know them and on a judge—I have not seen an amendment on that issue, so I am still talking about a judge—to make a decision about capacity.
My concern is about some aspects of the Mental Capacity Act, which was not written for these scenarios, and the hon. Member for Richmond Park talked in particular about the statutory principles in it. I am not an expert on these issues, and my hon. Friend the Member for Stroud behind me is more of an expert on some of them. However, there is no obligation in the code of practice under the Act to consult carers involved in a person’s life. The code says:
“if it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.
Therefore, given the way the Act and the code of practice are worded, there is no obligation in the scenarios I am discussing.
There is another issue I was going to raise before I took that intervention. Mencap does considerable hard work. At my local branch, there are many people whose parents are in their 70s and 80s and have cared for their child all their life. I am not being rude, but their child, who is in their 40s or 50s, does feel like a burden to their parents. They know the obligation their parents have to care for them for their whole life. I ask Members to consider what the Mental Capacity Act says: those adults are at a level of capacity to make decisions, but they have been supported in those decisions all their lives and do not—
“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?
I will talk a little about evidence. The Law Society has a neutral position on the Bill, but it has said that, before the provisions become law, a comprehensive consultation should be undertaken to allow resident experts to share views on the appropriate definition of capacity for the purposes of the Bill. That is the position of the Law Society.
Dr Rachel Clarke told us:
Dr Sarah Cox said:
Professor House, when referring to
said that
Baroness Falkner said:
Dr Hussain said:
Dr Hussain went on to say:
“Ultimately, I do not think the Mental Capacity Act and safeguarding training are fit for purpose.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.]
Professor Owen said:
“That conveys questionable confidence in the consent processes, of which mental capacity is part, in relation to the decision to end one’s life. It is significant evidence about the confidence that is out there among experienced practitioners.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 228, Q290.]
Dr Price said:
“I…refer back to Professor Gareth Owen’s oral submission, thinking about the purpose that the Mental Capacity Act was drawn up for and the fact that decisions about the ending of life were not one of the originally designed functions of it. We would need to think carefully about how that would then translate into a decision that was specifically about the capacity to end one’s life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 268, Q349.]
Dan Scorer, from Mencap—as my hon. Friend the Member for Spen Valley knows, I was adamant that Mencap would give evidence to us—said:
“building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 269, Q350.]
He clearly cited what many people know occurred during covid, with “do not resuscitate” orders and decisions being made on people’s behalf. That is what has driven me to this place, and that is why I will support the amendment. I also have further amendments on this issue later on down the line.
I completely understand what my hon. Friend the Member for Spen Valley said about training in relation to these decisions and scenarios. At the end of life, people should have autonomy and choice, but if that comes at the price of one person, in a borderline capacity decision that is made on their behalf, it will be one death too many.
I want to speak in support of new clause 1, tabled by the hon. Member for Richmond Park, to replace the use of the Mental Capacity Act with a new ability test. This goes to the heart of the Bill: it is absolutely crucial. Clause 3, which her new clause would replace, is in a sense the essence of the Bill. It is the shortest clause, but perhaps the most important one, because it determines the means by which somebody will be assessed to be capable of making this decision. It is a very important protection—and, at its simplest, this is a very confusing and complicated area. I will no doubt confuse myself in the course of my speech, but I have a simple observation to make, which the hon. Lady also made very well. We are dealing with the issue of impaired judgment; currently, under the Mental Capacity Act, it will be possible, through the terms of this Bill, for somebody whose judgment is impaired by virtue of a mental disability or mental illness to successfully apply for an assisted death. I do not think that is what the public want and I do not think it is what the House of Commons voted for. I think it is a misunderstanding of the principle of the Bill, which did win support on Second Reading.
The simple fact is that somebody’s judgment can be impaired under the Mental Capacity Act, but they could still have capacity. We have repeatedly heard points made about how the Mental Capacity Act applies in the normal conduct of life for disabled people—for people with mental disabilities. For instance, people can be anorexic, depressed or suicidal, and of course they can still consent to all sorts of decisions that affect their life, including medical treatments. A person can consent to have surgery on a broken leg while depressed; there is no difficulty whatever with that and of course that is appropriate. That is rightly the basis on which we currently judge capacity.
New clause 1 would build on the terms of the Mental Capacity Act. It would add to the principles of autonomy and of people being able to understand, use and weigh the relevant information. As I said in an intervention, the key point is that using this new test of ability would ensure that the person was fully able to do those things—fully able to understand, use and weigh the relevant information. In the case of impaired ability, they would not be considered to pass the test.
We hear a lot that this is the toughest Bill in the world, with the highest safeguards. It is worth pointing out that in Oregon, which this Bill is largely inspired by, there is an impaired judgment test. There is a capacity test similar to that in the Mental Capacity Act, but people are also required to demonstrate that there is no impaired judgment, and that is exactly what the hon. Lady is seeking to achieve. Her new clause would build on the terms of the Mental Capacity Act with these key principles about understanding information, but would ensure that it was a full understanding, with no impairment. It would strengthen the Bill without complicating it. In fact, it would significantly simplify it, because at the moment—this is the substantial issue with the application of the Mental Capacity Act—a huge complication is involved when we go into the forest of the MCA and try to apply it in these terms. When we try to navigate our way through the MCA in pursuit of an assisted dying application, there is a whole series of complications.
I will cite some of the evidence that we received. The Royal College of Psychiatrists, which we heard from, stated in its written evidence:
“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill.”
We also had evidence from King’s College London’s Complex Life and Death Decisions group, which is a group of world-leading professionals working on issues relating to the end of life. They say that use of the MCA for assisted suicide would be “an entirely novel test”. I note that the hon. Member for Penistone and Stocksbridge—and I think my hon. Friend the Member for Solihull West and Shirley—made the point that an “ability” test would be a novel term. I acknowledge that the term “ability” is not currently set out or recognised in law in the same way that capacity is, but as I said, it is clearly defined in new clause 1, as tabled by the hon. Member for Richmond Park. Of course it is going to be novel—we are talking about something that is entirely novel. Assisted suicide is a new measure that is being introduced, so of course we have to have a new measure by which we define who is appropriate.
“For the purposes of section 2, a person is unable to make a decision for himself if he is unable—
to understand the information relevant to the decision,
to retain that information,
to use or weigh that information as part of the process of making the decision”.
It is not a novel concept—that wording is virtually the same as in new clause 1. I do not see why we need to have the new clause or the new definition, as it is already present in the Mental Capacity Act.
The key difference is the word “fully”. The case law around the MCA allows for somebody to be deemed capacitous even though their judgment might be impaired. What is proposed in the new clause is the closing of that lacuna, so that it would not be possible for someone to get an assisted death if their judgment was impaired. That is the key difference.
It is also important to exclude the MCA because of the thicket of complications that it would entail. We have heard about the importance of simplification. A much simpler and better way to do the entirely novel thing that we are proposing, which is to authorise assisted suicide by the state, is to have a new definition.
I am arguing that the MCA is a complicating factor in the process that is being proposed for the Bill; it makes things much more difficult and complicated. The point has already been made—the hon. Member for Richmond Park put it very well—that, in the case for the MCA, a lot of weight is being put on the evidence from Sir Chris Whitty, suggesting that the MCA works very well. I point out that Sir Chris made a significant mistake in his evidence, when he said that
“the more serious the decision, the greater the level of capacity that someone needs to have.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]
There is no such requirement in the Mental Capacity Act. Of course, we would hope that doctors would take a serious decision more seriously than a trivial one, but there is no such requirement. I cite Alex Ruck Keene KC, who wrote to the hon. Member for Richmond Park after his evidence session; with the greatest of respect to Chris Whitty, the fact that he got that wrong does not inspire confidence in his comments that the Mental Capacity Act is well understood by doctors throughout the country. I very much echo that. We have had so much evidence on how the Mental Capacity Act does not work well in practice that I think it was regrettable for the chief medical to have made the Panglossian observation that every doctor interprets it in exactly the same way and it works perfectly everywhere.
The Mental Capacity Act does not detect coercion. We will discuss coercion more in subsequent debates, but that Act is certainly not the safeguard against it. Professor House made some comments to us about Down’s syndrome and about diagnostic overshadowing. That is a very important concept. I am afraid to say that it is frequently the case, regarding people with severe disabilities, that capacity—or, indeed, incapacity—is not correctly observed because the medical professional will not see beyond the more presenting of their conditions. Observing capacity in someone who does have disabilities is often mistaken; it is harder than it is regarding other people.
I will quickly observe the point made by witnesses about what is called fluctuating capacity, which is inherent in certain conditions, particularly dementia. The point about a decision for an assisted death is that, once someone has made it, they cannot unmake it. By the way, that is a key distinction between requesting an assisted death and declining treatment: one can always go back on a decision to decline treatment, but not on a decision to have an assisted death. Capacity fluctuates, particularly with dementia.
Professor Owen made an important point to us regarding capacity. He said:
“You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability.”
He talked about
“pressure within a family, let us say, which is often not malign in its intentions, but it exists.”
and about situations
“where there is an impairment and also an interpersonal pressure”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 234, Q297.]
Although we are not talking at this point explicitly about coercion and family pressure, the issues around capacity and coercion are nevertheless intertwined, and it is often very difficult for doctors to determine what is really going on. Again, the challenges around capacity are intense.
The point has been made by hon. Members that under clause 9(3)(b), if the second doctor in the process is in doubt about capacity, they “may” refer the person to a psychiatrist, but the clause in fact refers to “a registered medical practitioner” who “has experience of” the assessment of capacity—so not a psychiatrist, but just someone who has experience, whatever that means, of the assessment of capacity. It is not totally obvious what that means. Amendment 365 has been tabled overnight by the hon. Member for Bath (Wera Hobhouse) which would mean that both the first and second doctor, and indeed the court, if we are allowed to have a court process, “must”—not “may”— refer the person to a psychiatrist. That is not just if they are concerned about capacity, by the way. The court, or whoever it is, must conclude that there is no
“impairment of judgment arising from a mental disorder or other condition”.
I very much welcome that amendment and I hope that we will pass that in due course.
The point that I want to make is that we are in the foothills of understanding the effects of depression, cognitive impairment and social pressure on the decision to end life. That is a point made strongly by a series of witnesses to us in both oral and written evidence: we are still very much in the early stages of understanding how capacity interacts with mental illness, disability and coercion. Then, into the mists of vagueness, we are proposing to insert this single clunking, clumsy question: “Is there evidence of incapacity?” I strongly suggest that the abuse of the Mental Capacity Act that we are seeing here is not a way of simplifying the process of ensuring that there are a small number of strong safeguards; it is a great complication of the process and introduces more complexity, as we see from the many additional things that clinicians should consider. That is in direct contradiction to the principle of the Mental Capacity Act, which simply asks the question: “Is there capacity?”
The point has been made that there is more to the Mental Capacity Act than simply the question of capacity. There are concepts of best interests and supporting decision making. As the hon. Member for Penistone and Stocksbridge suggested, it is a cumulative process. The Mental Capacity Act entails not only the question of capacity but the consideration of best interests and whether we are supporting the decision making of an individual. I am not sure how those terms apply in a situation of assisted dying. It is not similar or comparable to the sorts of decisions that the MCA is intended to apply to.
What my hon. Friend the Member for Sunderland Central is suggesting is that we table an amendment that would add to the list of specific exclusions; that would further strengthen the two stages. First, there would be the full Mental Capacity Act tests that may determine that the person does not have capacity. Such an amendment would give us belt and braces in circumstances where the person does not have capacity. Under the Bill currently, the person would fall out of scope and not be able to seek assistance if it had been determined that they did not have capacity. A belt-and-braces approach would make sure that there is no circumstance in which it could be determined by a medical practitioner or any other that it was in their best interests to follow this course of action.
Under the Bill as currently drafted, those people who have not got capacity as a result of the Mental Capacity Act would not be able to have access to the provisions in the Bill. My hon. Friend the Member for Sunderland Central suggests that we augment that even further so that there can be no doubt that, where it has been determined that the person does not have capacity, following the Mental Capacity Act, we should also add a very clear exception—
Adjourned till this day at Two o’clock.
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