Terminally Ill Adults (End of Life) Bill (Twenty-seventh sitting)

Debate between Marie Tidball and Sarah Olney

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Sarah Olney]

I want to make a couple of further points in response to some of the those raised by Members. First, I have looked at amendment 500, which the hon. Member for Spen Valley directed me to, and I thank the hon. Member for Reigate for showing it to me—her record keeping is much better than mine. I was going to say that amendment 500 does not cover a lot of the areas that I have raised, but the hon. Member for Spen Valley has just referred me to amendment 455.

However, it is important to say that amendment 455 refers only to “protected characteristics” under the Equality Act 2010. I specified particular characteristics in amendment 273 in response to some of the evidence that we received. In particular, I included the person’s age in response to evidence that we received from Together for Short Lives, which represents children’s hospices including Shooting Star in Richmond. It had specific concerns about the issue of assisted death being raised with young people under 18, and that is why I specified that. I also included gender and ethnicity, which I mentioned earlier, and that came through very strongly in a lot of the oral evidence that we received.

To address the point made by the hon. Member for Sunderland Central, I did not hear sexuality being raised as a risk factor at any point. Obviously, members of the LGBTQ+ community experience a great deal of discrimination, but I have not heard it raised as a specific risk factor for assisted dying, which is why it is not on the list. I have included the person’s postcode because I do not know a better way of assessing whether someone is from a low-income background. I particularly draw the attention of hon. Member for Spen Valley to that characteristic, because it is obviously not protected under the Equality Act, so I remain really concerned.

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

For the avoidance of doubt, socioeconomic status would have been a protected characteristic under the Equality Act, were it not for the previous Conservative Government.

[Sarah Olney]

I thank the hon. Lady for that useful intervention. As I say, socioeconomic status is not currently a protected characteristic under the Equality Act.

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

Debate between Marie Tidball and Sarah Olney

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Dr Tidball]

It is a pleasure to serve under your chairship, Mrs Harris. I will be supporting amendments 319 and 320 tabled by my hon. Friend the Member for Bexleyheath and Crayford. I am a great admirer of my hon. Friend’s work in championing people with learning disabilities, and his mission to give them a strong voice in this Bill. It is an area very close to my heart, having spent over a decade and a half working with people with learning disabilities and the advocacy organisations that support them.

I will, however, not be supporting my hon. Friend’s amendment 339, merely because I am drafting something to strengthen those measures even further. My amendments will go beyond amendment 339 and amend the code of practice so that seeking advocacy and access to an appropriate adult applies across the pathway to those seeking assistance, not merely in relation to the content of clause 4, as in that amendment.

I want to ensure that access to an independent advocate or appropriate adult is expanded to cover those with autism, a learning disability or a mental disorder, which is not currently covered by amendment 339. That will enable those people to engage with any of the provisions under this Bill through the support that they would receive from an independent advocate or appropriate adult.

As I say, I am also seeking to strengthen access to such advocacy across the pathway, through seeking assistance at each stage. I have huge respect for my hon. Friend, but I want to make sure that we specifically include the language of “mental disorder”, to make sure that that particular group of people with mental health problems is able to access independent advocates, as well as those with learning disabilities and autism.

I am also looking at whether we need a consequential amendment or new clause that would make the Secretary of State put in place provisions for regulations as to the appointment of persons as independent advocates in order to ensure that those seeking assistance under the legislation who have a learning disability, autism or a mental disorder can have proper access to such advocates. That would strengthen the resource provision and access for that group.

I have worked closely with Mencap on the amendments that I am drawing up and will continue to do so, and I would welcome input from my hon. Friend the Member for Bexleyheath and Crayford. Although I support his intent in principle, I will be tabling amendments to cover a broader group of individuals to access such appropriate adults and independent advocates, so that they can seek and access advocacy across the pathway and period of seeking assistance. My amendments would put access to appropriate adults and independent mental health advocates on a much firmer footing in the Bill.

[Sarah Olney (Richmond Park) (LD)]

I wish to speak briefly to amendment 270, in the name of the right hon. Member for South West Wiltshire, to which I have put my name. It is about the really important issue of assessing suicidal intent as part of the assessment as to whether somebody has capacity to seek an assisted death. It is a really important point. The Bill expressly sets out that the person seeking an assisted death should have

“a clear, settled and informed wish to end their own life,”.

Amendment 270 seeks to establish that the wish cannot be clear or settled if there is any doubt about whether the person has a suicidal intention instead of seeking an assisted death on the basis that they have a terminal illness. In its current form, the Bill does not require a structured assessment of whether a patient is experiencing remediable suicidal risk factors, such as treatable depression, external pressures or suicidal ideation, before assisted dying is discussed.

In the oral evidence, Dr Mulholland said that most people with depression, anxiety and other mental health problems “would have capacity” under the Mental Capacity Act because it would be presumed. It is not necessarily an obstruction to people being referred for anything. It is an important point that someone can have depression and that it can lead them to have suicidal thoughts, but under the Mental Capacity Act they would still be assessed as having capacity to decide that they wanted an assisted death.

What is really important is that we have, over some years in this country, developed a suicide prevention strategy. I am sure that every Member in this room has had constituents approach them, as I certainly have, about family members who have committed suicide, where they were able to identify factors that made that suicide preventable. That is why it is so important that the suicide prevention strategy has been developed and continues to be developed, and why leading figures associated with that strategy—and with suicide prevention more widely—are concerned that a Bill for assisted dying may undermine suicide prevention strategies. We should take every care to prevent that in this Bill.

The current UK suicide prevention strategy cites early intervention as a priority to implement tangible actions aiming to reduce the risk factors of suicide. In line with that strategy, amendment 270 provides early intervention that aims to identify the symptoms of suicidality in a patient before the initial discussion about assisted dying can take place. At the bare minimum, someone who is severely suicidal will not be allowed to enter into conversations about receiving an assisted death.

It is important to reflect that suicidal ideation is not the same as a settled wish to die. Evidence shows that when mental health issues are treated, many patients no longer seek to end their life by suicide. Dr Price, in the oral evidence, said that 20% of terminally ill patients experienced depression, which is strongly associated with the wish to hasten death. When depression is identified and treated, the wish to die often diminishes. It is so important to distinguish and make provision for those people who are experiencing a wish to die as suicidal ideation, as opposed to the

“clear, settled and informed wish”

specified in the Bill.

Research from the Office for National Statistics, King’s College London and the University of Manchester suggests that people diagnosed with a physical terminal illness are at an elevated risk of death by suicide, because of an increase in the psychological distress that can lead to severe depression in many patients, but data from the study shows that it is a more pronounced risk of suicide in the first six months after diagnosis or first treatment and, on average, suicide rates in the first year after a terminal diagnosis were 21.6%. Of course, it is important to reflect on the fact that a diagnosis of a terminal illness can take place some years in advance of the actual prognosis that the person’s death may occur. We are looking at a group of people who are within six months of their death as far as can be established by what is, as we know, uncertain prognosis—yet the incidence of suicide among those with a terminal illness is much more weighted towards those who have just received a diagnosis. These, of course, are not the same group of people; there may well be overlap, but they are definitively not the same.

Evidence on the gov.uk website suggests that

“over half of men aged 40 to 54 who died by suicide had a physical health condition.”

We know that having a physical health condition or any kind of terminal illness has an impact, and that evidence demonstrates the impact that poor physical health has on mental wellbeing. We know that thereDr Louis Appleby, a psychiatrist who leads the national suicide prevention strategy for England and directs the national confidential inquiry into suicide, has expressed concerns that the Bill fundamentally undermines the basis of the suicide prevention strategy. Identifying and diagnosing capacity and mental disorders are easy to put down in writing, but in practice it is much harder for professionals to make a correct judgment straightaway. Where we do not want someone to die, we intervene by offering mental health support, crisis services and what we hope is a comprehensive suicide prevention strategy, but for those who qualify under this Bill, instead of that suite of support, we allow them to progress straight into discussion to end their life.

It is really important that we have had a debate today about how the discussion should be initiated and the appropriate way to do that, but what is important about amendment 270 is that it takes into account the specific factor of suicidal ideation. It would mean that whatever the outcome of the decision about how the conversation should be initiated, the possibility that the person wishes to commit suicide is nevertheless taken into account.

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

Debate between Marie Tidball and Sarah Olney

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Sarah Olney]

I have a suspicion that the hon. Gentleman may have made that point already in one of his many interventions. Withdrawing treatment is not the same as someone making an informed wish to have their death assisted. That is why we need to be very careful about considering whether the Mental Capacity Act is appropriate for that kind of decision. That Act is being used in a way it was not designed for. To use this definition of “capacity” is to accept the premise that this is just like any other treatment option and not qualitatively different, and fails to recognise the complexity and gravity of the decision.

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.

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

With respect to the hon. Member for Richmond Park, I do not support her amendments, which seek to replace the references in the Bill to the Mental Capacity Act with the concept of “ability”. First, medical practitioners already know, regularly use and well understand the Mental Capacity Act 2005. As a result, as Professor Chris Whitty said in evidence, where practitioners conduct such an assessment of an individual separately, they are usually in agreement in their decisions about the outcome in relation to that individual. That was also mentioned by my hon. Friend the Member for Stroud.

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.

[Sarah Olney]

Will the hon. Lady give way?

--- Later in debate ---

[Dr Tidball]

I will give way to the hon. Member for Richmond Park, who asked first.

[Sarah Olney]

The hon. Lady has moved on considerably from the point that I was going to make, so I took it that she was not going to take interventions. Although I would have liked the opportunity to respond to some of her points, I have kept my counsel. Since she has now given way, I want to make something of a point of order. The hon. Lady mentioned that she thought my use of the word “ability” was ableist, and I want to put on the record that I had absolutely no intention of it being interpreted in that way. I meant no offence, and I hope that the word would not have been considered in such a light. If that caused any offence, I apologise. I hope that the general meaning of the word “ability” is well understood in this context.

[Dr Tidball]

I am grateful to the hon. Lady for making that statement. That is not the assumption. As I will say later, the term “ableism” is very much grounded in a deficit model of disability, which assumes that somebody is not capable of doing something themselves—for instance, making important decisions—whereas the Mental Capacity Act starts from a different perspective: it presumes that the person will have the ability to do something until proven otherwise. That is why I feel that the concept of ability does not align well with what is needed in understanding and providing autonomy to people making very difficult decisions at the end of their lives.

--- Later in debate ---

[Dr Tidball]

I do not have a list of the case law in front of me—I am sure it will be possible for that to be found for my hon. Friend—but it is done regularly. The Mental Capacity Act is used regularly in decisions about the withdrawal of life-support treatment. That is the case, and she is welcome to search for the case law.

[Sarah Olney]

The hon. Lady talks about the four tests and parts of the Mental Capacity Act; the point I was making was that we want to retain elements of the Act, although using it in its entirety is problematic in this context. The four functional tests about whether someone is capable of making a decision absolutely should be retained—as she said, that is well tested, it works well and people understand in a court of law exactly how to apply it—but some of the other elements of the Mental Capacity Act are problematic. That is why I seek to redraft “capacity” to “ability”—I accept that that might be a problematic word, but I hope the hon. Lady will take on board my earlier comments—and that is what is important. The hon. Lady is saying we should not take out those bits of the Mental Capacity Act that are valuable and important, and I agree.

[Dr Tidball]

I am pleased to hear the hon. Lady’s agreement. As someone who has worked in this space for a long time, I say that if she does not want to have the impact in law of putting in place a concept that would be ableist and take a deficit model of disability, we need those five principles that are already embedded in the Mental Capacity Act. We also need the stringent two-stage test, the second stage of which has the four elements that I set out. Only then can we be certain that we are approaching the paradigm of this complex and important decision making as one where we understand the autonomy and best interests of groups of people we all wish to best protect.

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

Debate between Marie Tidball and Sarah Olney

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Sarah Olney]

Q Dr Price, I am really glad that we are able to have the Royal College of Psychiatrists in front of us today; thank you for making the time. I want to ask you about paragraph 11 of your written evidence, which states that it is the royal college’s view that the Mental Capacity Act

“is not sufficient for the purposes of this Bill.”

Could you expand a little on that and, if you feel able, make some recommendations as to what you think could be sufficient?

Dr Price: Thank you. In answering this, I will also 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.

We also need to think about how that would work in practice. When we are thinking about capacity assessments, it is usually related to a treatment or a choice about a treatment or about somebody’s life—for example, changing residence. Psychiatrists and doctors and actually lots of professionals are very used to those sorts of decisions and have gathered a lot of knowledge, expertise and experience around it. This particular decision is something that in this country we do not have knowledge, expertise and experience in, and we therefore need to think about how that would look in practice.

As for advice to the Committee about what that might look like, I think that we need to gather what evidence we have—it is actually very thin—from other jurisdictions that think about capacity as part of this process. I am thinking about my PhD: I visited Oregon and talked to practitioners who were directly involved in these sorts of assessments. They described the process, but they are not using the Mental Capacity Act as their framework. They described a very interpersonal process, which relied on a relationship with the patient, and the better a patient was known, the more a gut feeling-type assessment was used. We need to think here about whether that would be a sufficient conversation to have.

One of the things that I have thought quite a lot about is how we can really understand the workings of a mental capacity assessment, and one of the best ways we can do that is to see who is not permitted to access assisted suicide because of a lack of capacity and what that assessment showed. We do not have data because the assessments for people who were not permitted to do it are not published; we cannot read them, so if this becomes legislation, one of the suggestions that I would have—it is supported by the Royal College of Psychiatrists—is to, with patients’ consent, record capacity assessments to see whether they meet the standard that is necessary. I think it is important to set out the standard necessary and the components needed to be confident about a mental capacity assessment. That will help with standards, but will also help with training, because this is new territory for psychiatry, for medicine, and to be able to think about consistency and reliability, training needs to actually see a transparency in capacity assessments.

[Dr Tidball]

Q This is a question for Dan Scorer. I have worked with a learning disability charity, My Life My Choice. I have done a lot of work with that charity on self-advocacy in the context of healthcare, so I am really keen to hear from you. We know there are excellent initiatives that focus on supporting people with learning disabilities to engage with advanced care planning, so that their preferences at the end of life can be respected. I just wondered whether you could share some lessons learned, particularly in relation to giving people with learning disabilities a voice and an opportunity to talk about what matters to them at the end of life, and say, as part of that, what we could incorporate into the regulations that are being developed as part of the Bill.

Dan Scorer: There are two key concerns I will touch on. One was covered just at the end of the last session, with the question about preliminary discussions, and that is certainly a key area that we have concern about, about how that initial conversation is initiated and structured. For us, 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. Indeed, in one of our own care services, we had someone we support who was called up by a GP and asked whether she would want the kiss of life. The GP was trying to explain it to her excessively and she said, “No, of course not. I would not want to be kissed by someone I do not know.” Potentially, a “do not attempt CPR” notice was put in place. That example just shows the importance of preparing and supporting people for such discussions, so we want to see a right to advocacy included within the Bill to support people considering their end-of-life options.

Also, 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. That is a huge issue that has been addressed, for example, through the Oliver McGowan mandatory training on learning disability and autism, which is rolling out across the NHS and social care services at the moment. However, in addition to the MCA, we also need to make sure that clinicians fully understand the Equality Act and the NHS accessible information standard about rights to information and support for disabled patients.

On clause 5, on training, we want to see much more specificity about the level of training that clinicians would have around the Mental Capacity Act and to make sure that they are fully aware of their responsibilities to make reasonable adjustments for patients, and to support them with understanding their choices around end-of-life care, which could include assisted dying.

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

Debate between Marie Tidball and Sarah Olney

Thursday 30th January 2025 Public Bill Committees

[Sarah Olney]

Q Dr Price, I am really glad that we are able to have the Royal College of Psychiatrists in front of us today; thank you for making the time. I want to ask you about paragraph 11 of your written evidence, which states that it is the royal college’s view that the Mental Capacity Act

“is not sufficient for the purposes of this Bill.”

Could you expand a little on that and, if you feel able, make some recommendations as to what you think could be sufficient?

Dr Price: Thank you. In answering this, I will also 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.

We also need to think about how that would work in practice. When we are thinking about capacity assessments, it is usually related to a treatment or a choice about a treatment or about somebody’s life—for example, changing residence. Psychiatrists and doctors and actually lots of professionals are very used to those sorts of decisions and have gathered a lot of knowledge, expertise and experience around it. This particular decision is something that in this country we do not have knowledge, expertise and experience in, and we therefore need to think about how that would look in practice.

As for advice to the Committee about what that might look like, I think that we need to gather what evidence we have—it is actually very thin—from other jurisdictions that think about capacity as part of this process. I am thinking about my PhD: I visited Oregon and talked to practitioners who were directly involved in these sorts of assessments. They described the process, but they are not using the Mental Capacity Act as their framework. They described a very interpersonal process, which relied on a relationship with the patient, and the better a patient was known, the more a gut feeling-type assessment was used. We need to think here about whether that would be a sufficient conversation to have.

One of the things that I have thought quite a lot about is how we can really understand the workings of a mental capacity assessment, and one of the best ways we can do that is to see who is not permitted to access assisted suicide because of a lack of capacity and what that assessment showed. We do not have data because the assessments for people who were not permitted to do it are not published; we cannot read them, so if this becomes legislation, one of the suggestions that I would have—it is supported by the Royal College of Psychiatrists—is to, with patients’ consent, record capacity assessments to see whether they meet the standard that is necessary. I think it is important to set out the standard necessary and the components needed to be confident about a mental capacity assessment. That will help with standards, but will also help with training, because this is new territory for psychiatry, for medicine, and to be able to think about consistency and reliability, training needs to actually see a transparency in capacity assessments.

[Dr Tidball]

Q This is a question for Dan Scorer. I have worked with a learning disability charity, My Life My Choice. I have done a lot of work with that charity on self-advocacy in the context of healthcare, so I am really keen to hear from you. We know there are excellent initiatives that focus on supporting people with learning disabilities to engage with advanced care planning, so that their preferences at the end of life can be respected. I just wondered whether you could share some lessons learned, particularly in relation to giving people with learning disabilities a voice and an opportunity to talk about what matters to them at the end of life, and say, as part of that, what we could incorporate into the regulations that are being developed as part of the Bill.

Dan Scorer: There are two key concerns I will touch on. One was covered just at the end of the last session, with the question about preliminary discussions, and that is certainly a key area that we have concern about, about how that initial conversation is initiated and structured. For us, 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. Indeed, in one of our own care services, we had someone we support who was called up by a GP and asked whether she would want the kiss of life. The GP was trying to explain it to her excessively and she said, “No, of course not. I would not want to be kissed by someone I do not know.” Potentially, a “do not attempt CPR” notice was put in place. That example just shows the importance of preparing and supporting people for such discussions, so we want to see a right to advocacy included within the Bill to support people considering their end-of-life options.

Also, 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. That is a huge issue that has been addressed, for example, through the Oliver McGowan mandatory training on learning disability and autism, which is rolling out across the NHS and social care services at the moment. However, in addition to the MCA, we also need to make sure that clinicians fully understand the Equality Act and the NHS accessible information standard about rights to information and support for disabled patients.

On clause 5, on training, we want to see much more specificity about the level of training that clinicians would have around the Mental Capacity Act and to make sure that they are fully aware of their responsibilities to make reasonable adjustments for patients, and to support them with understanding their choices around end-of-life care, which could include assisted dying.