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

Daniel Francis Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[The Chair]

Will everyone ensure that all electronic devices are switched off or to silent mode? We now begin line-by-line consideration of the Terminally Ill Adults (End of Life) Bill. The selection list for today’s sitting is available in the room and on the parliamentary website. It shows how the clauses, schedules and selected amendments have been grouped together for debate.

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.

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

On a point of order, Ms McVey. Yesterday, members of the Committee received notification that, in the last week, we have received a further 242 pieces of written evidence and 159 pieces of correspondence. Last week, I had read every word of the original 110 pieces of written evidence and 56 pieces of correspondence, as well as studying all the amendments and tabling amendments of my own. As I said, however, more than 400 pieces of evidence and correspondence have been uploaded during the past week, with no deadline by which further such evidence needs to be submitted. Given the large number of evidence submissions every day, Members may well struggle to keep abreast of it and be able to say that they have read every piece of correspondence before the tweaking of the Bill.

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.

[The Chair]

I thank the Member for making that point of order. It is normal practice for evidence to come in, and for it to be submitted as it comes in. However, due to the large amount of evidence and its substance, and to the importance of the Bill and this line-by-line scrutiny, I will seek the advice of the Clerk and will come back to him.

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It must therefore be proven that somebody lacks capacity.

[Daniel Francis]

The Mental Capacity Act is written to enable people to carry out day-to-day scenarios, such as buying a coffee or doing their banking, so that they are not challenged in every transaction in their life. It is therefore a very low bar to be deemed to have capacity. Does the hon. Member believe that it was written for this kind of scenario?

[Sarah Olney]

That is an absolutely relevant point. The Mental Capacity Act was not drafted in anticipation of it ever being used for this kind of scenario. Therefore, it is really incumbent upon us to weigh very carefully whether the Mental Capacity Act is the right way of assessing people’s ability to make this decision. As I was saying, it includes the presumption of capacity, and for a decision to end one’s life, an assumption of capacity to make that decision is a low bar, and we have lots of evidence.

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[Dr Shastri-Hurst]

I will make some progress, if I may, because I think I have indulged your patience for far too long, Ms McVey.

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.

[Daniel Francis]

My hon. Friend the Member for Penistone and Stocksbridge knows I am an ally on many of these issues, but I will humbly disagree with her on some matters. I am not a lawyer or a doctor, but like many people here I speak from lived experience. I speak as the parent of a learning-disabled child, so I see the kinds of decisions that have to be made day to day, and the kinds of arguments and conversations that have to be had with people who presume that my child has more or less capacity than she has. Believe me, that is a constant, daily battle for me and my wife.

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.

[Kim Leadbeater]

I do not particularly have a question to ask my hon. Friend, but I want to pay tribute to him for engaging so positively with the scrutiny of the Bill and for the very personal experience he has shared with the Committee. I reassure him that I will do everything I can to work with him, as I have so far through this process, because his fears are real, and I hear them. We have a job to do through the Bill to solve the problems that exist for people who are dying, but we do not want to create other problems. I am happy to continue to work with him to ensure that we address as much of that as we can through the Committee.

[Daniel Francis]

I thank the Member in charge for her comments. That is the conversation we had when she invited me to join the Committee, and we will continue to have conversations as amendments come forward.

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—

[Jack Abbott]

We have spoken a lot today about further safeguards and provisions, beyond the Mental Capacity Act. However, I note that my hon. Friend has tabled amendment 339, which states that if a

“person has a learning disability or is autistic”

they

“must be provided with accessible information and given sufficient time to consider it”

and that, additionally, there must be a “supporter” or “advocate” with them. If that amendment was passed, would that satisfy some of my hon. Friend’s concerns about the Act?

[Daniel Francis]

I am hearing that that amendment will need some rewording, but it would address some of my concerns. I am working with Mencap, and further amendments will be tabled to later clauses of the Bill. I understand that one of our colleagues has also tabled amendments, which I welcome. However, I would still have concerns about the interpretation—and there are different interpretations—of the current code of practice when it comes to the involvement of carers and loved ones. Those concerns brought me to the place I came to on Second Reading. I did not seek to be the person standing here; indeed, a year ago, not only did I not believe that I would be a Member of Parliament, but I did not believe that I would be on this side of this argument. It is this particular point that has driven me to this position.

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.

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[Kim Leadbeater]

My hon. Friend cites some interesting observations from the oral evidence, and I welcome his doing so. I draw his attention to my amendments 186 and 198, which look at the training. This is something I feel passionately about. If the Bill were to pass, having gold standard training would be vital, as I said during that sitting. I will do whatever I can to embed that in the Bill, and I will certainly consider what that will look like in the instances that we are discussing.

[Daniel Francis]

I welcome that commitment and look forward to that discussion in due course.

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.]

[Danny Kruger]

I note the point about training, and of course we would all welcome the strongest possible training. As the hon. Gentleman implies, nobody has yet used the Mental Capacity Act to assess somebody for an assisted death; it would be completely uncharted territory for the whole system, including anybody providing training. How does he imagine that training might be designed to allow for the Mental Capacity Act to be applied in this case, when it would be completely novel?

[Daniel Francis]

As I say, I am not an expert on this matter from a legal or medical background, but those are the concerns that have driven me to the place that I am in.

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.

[Danny Kruger]

It is a great pleasure to follow the hon. Member for Bexleyheath and Crayford, and I pay tribute to his powerful speech. I wish more people on our side of the debate and on the Committee had medical backgrounds, but I am glad that we have someone who has such direct personal experience of supporting people with learning disabilities. I am grateful to the hon. Gentleman for everything he said and I entirely agree with it.

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.