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

Daniel Francis Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Stephen Kinnock]

I thank my hon. Friend for that intervention. Fundamentally, the balance of judgment of risk is based on whether, if we add additional words, phrases and amendments to a piece of legislation, it would have the result of decreasing the risk we are trying to address, or of increasing that risk. The Government’s view is that the Mental Capacity Act is a robust foundation for the decisions and processes set out in the Bill. Hon. Members are, of course, absolutely welcome to say that they do not believe that the Mental Capacity Act does what it should be doing and that that is why they have tabled amendments. However, the Government’s view is that the proposed changes would increase the risk of somehow creating a parallel framework to the Mental Capacity Act, rather than keeping it as the foundation. The system is very familiar with it and knows how it works, and that is the best way to minimise the risks that I think all hon. Members are keen to minimise to the greatest extent possible.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

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?

[Stephen Kinnock]

What we are saying is that we have the Mental Capacity Act as the legal basis for the questions we are addressing in the Bill. Cleary, on top of that regulations will be brought forward by the Secretary of State to ensure that medical practitioners have adequate training and that capacity-building takes place, so that the system is able to deal with the question before it, and therefore the judgment of the medical practitioner is trusted. I think, in the situation my hon. Friend just outlined, that that would be the same case.

Again, this is the process that every Government go through in pretty much every single aspect of policy that they deal with. They have a legislative basis; they bring forward regulations; they deliver training and they build capacity; and the system works on that basis. We then need to ensure that we have a system that is flexible, robust and resilient enough to deliver and to address whatever challenges it faces.

[Daniel Francis]

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.

[Stephen Kinnock]

I see the point that my hon. Friend is making, but the amendments, as the Government understand them, would risk creating a parallel legal framework and increasing levels of uncertainty, and the more that we increase levels of uncertainty, the greater the risk of the system not working properly. Clearly, the situation that he describes is based on particular measures that have been brought forward, but what we are talking about is a legal framework, not a code of practice, in the legislation.

Amendment 398 would remove the existing presumption of capacity in the Mental Capacity Act, thus requiring a capacity assessment in every case. The amendment would also establish a different test for assessing capacity with regards to the decision to seek assisted dying. Establishing a lack of capacity would not be based on an inability to make a decision because of an impairment of, or disturbance in, the functioning of the mind or brain, as in the Mental Capacity Act. Rather, this would allow for the consideration of other factors, such as immaturity. It would also apply a higher standard of proof than the Mental Capacity Act requires for other decisions, including for serious medical treatment, by requiring assessors to establish capacity “beyond reasonable doubt”. This may raise questions about the nature and extent of the evidence required.

In summary, the amendment would introduce a new framework for assessing mental capacity specific to assisted dying. This may create operational challenges for practitioners and healthcare professionals who are well experienced in applying the Mental Capacity Act.

--- Later in debate ---

[Kim Leadbeater]

It is a pleasure to see you in the Chair, Mrs Harris. I welcome another good debate on capacity, following our thorough deliberations a couple of weeks ago. In that debate, I made my views on the Mental Capacity Act quite clear. Although I have listened intently to colleagues’ contributions today, it remains my view that this well-established piece of legislation is the right vehicle for assessing capacity for the purposes of the Bill. I therefore commend the clause to the Committee.

[Daniel Francis]

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.

--- Later in debate ---

[Dr Shastri-Hurst]

My hon. Friend summarises a much more complicated conversation; I think he distils it down to an over-simplistic representation of how the conversation would go. A patient says, “I hadn’t envisaged that I may die while vomiting up faeces. What could we do?” The clinician would go through a variety of options that would be available in that scenario, but that would include, potentially, having a discussion about assisted death, as that would be one way of avoiding that situation coming across the hills.

This is the issue I have particular concern about. In the scenario where that conversation arises, a patient has very clearly indicated that they want to know all the options available for how they would manage their death, and the doctor feels that is a cue, quite understandably and, in my view, rightly, to have a wider conversation that involves assisted death, along with other options, because he or she believes that the patient has indicated that that is what they wish. If we say that a doctor cannot have that conversation in any circumstances, we open up the clinician to the accusation, perhaps from a relative, who says, “Hang on a minute, doctor. My relative didn’t raise that with you. You raised it with them.”

These are very subtle and carefully balanced conversations. I understand where the amendment comes from, but without trusting in the judgment of clinicians, who know their patients well, we are setting them up to fail. We are setting the system up to be more clandestine. We are going to prevent what are very genuine and important conversations from taking place, because people are too scared of the operational framework that would be imposed on them. In those circumstances, we would put forward a Bill that does not function as intended. For those reasons, I will not support amendments 8 and 124.

[Daniel Francis]

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.

[Naz Shah]

It is an honour to follow my hon. Friend the Member for Bexleyheath and Crayford. I rise to speak to amendment 8, which stands in the name of my hon. Friend the Member for Blackpool South (Chris Webb), and amendment 276, in my own name. I note that the hon. Member for Solihull West and Shirley spoke to amendments 8 and 124, which overlap and complement each other, although they are slightly different.

Before I get to the crux of why the Committee should support amendment 8, it may be helpful to spell out what it would do. Currently, clause 4(1) reads:

“No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this Act with a person.”

The amendment would change that to:

“No registered medical practitioner shall raise the subject of the provision of assistance in accordance with this Act with a person who has not indicated to that or another registered medical practitioner that they wish to seek assistance to end their own life.”

In a nutshell, that would mean that a doctor could not be the first person to raise assisted dying with a patient. The patient would have to raise it first, either with the doctor who had the initial discussion or with another doctor who referred the patient onward.

I urge Members to support the amendment, because it would provide another safeguard for vulnerable people. Many people affected by the Bill will be isolated; many will be poorly informed on medical matters and reluctant to ask questions of doctors.