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

Neil Shastri-Hurst Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Dr Tidball]

I will make some progress.

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.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

I thank the hon. Member for Richmond Park for tabling the amendments. Fundamentally, I do not agree with them, but I am grateful for her good intentions. I understand the concerns that she has raised, and she makes an eloquent argument, but I fundamentally disagree.

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.

[Danny Kruger]

My hon. Friend says that the term “ability” is not yet defined, but it is set out quite clearly in new clause 1, tabled by the hon. Member for Richmond Park. It simply says:

“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?

[Dr Shastri-Hurst]

My hon. Friend makes incisive points clearly and concisely, as always, but I cannot agree. This is a short clause that is dealing with a hugely complicated issue that is presently codified within the Mental Capacity Act, which runs to some 183 pages. I do not think that it is as simple as saying that the new clause deals with the issue.

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.

[Sean Woodcock]

The Royal College of Psychiatrists highlights that a person’s capacity can change and is decision-specific. It therefore says that the Mental Capacity Act is not suitable for the Bill. What is the hon. Member’s response?

--- Later in debate ---

[Dr Shastri-Hurst]

The hon. Member is absolutely right that capacity can change. It is an evolving piece: someone’s capacity at one point in time will not necessarily be the same as their capacity on a future or a previous date. However, the whole purpose of the Bill is to put a series of mechanisms in place that assess capacity to ensure a robust decision-making process.

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.

[Kit Malthouse]

I have to confess that I am a little confused by the evidence to which my hon. Friend refers. Can he confirm that it is perfectly possible for me to be diagnosed with a terminal disease and make an advance directive, which may apply in three months’ time, that in those circumstances I would decline treatment and would wish to die at that point? The Mental Capacity Act is used to assess me in making that advance directive, having had my terminal diagnosis. If it is good for that decision, I struggle to understand why it would not be good for a similar decision to end my life in similar circumstances.

[Dr Shastri-Hurst]

As always, my right hon. Friend makes a very good point. The Mental Capacity Act allows for advance directives on a whole variety of choices, including withdrawal of treatment, decisions on care or financial elements, and decisions on having treatment as opposed to not having treatment. It creates that ability and it is deemed robust enough for those purposes. It must therefore follow that it is robust enough for the purposes of the Bill.

[Sarah Olney]

I just want to probe the hon. Member on the capacity to make a future directive. Is he saying that, under the terms of the Bill as drafted and its reference to the Mental Capacity Act, it would be possible to say, “I may not be eligible now—I may not even be suffering from a terminal illness—but at some future point, because I have capacity today to make this decision, I should like to choose assisted dying”? Would that decision then be honoured at that future date, without any further intervention or assessment?

[Dr Shastri-Hurst]

The hon. Member makes an interesting point, which I had already considered; in fact, I have tabled a new clause that would address it. It is not grouped with the amendments now before the Committee, but I will touch on it, if I may.

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.

[Danny Kruger]

Is my hon. Friend suggesting—I think his new clause makes it clear, and I think my right hon. Friend the Member for North West Hampshire is making the same point—that it is inappropriate for an advance directive to authorise an assisted death? The Mental Capacity Act authorises somebody to decline treatment at a future point, so my hon. Friend is acknowledging that there is a difference between the principle of declining treatment and the principle of requesting an assisted death. Given his new clause, I do not imagine that my hon. Friend thinks that we should have advance directives that authorise an assisted death. If he acknowledges that, he must recognise that there is a distinction between declining treatment and requesting an assisted death.

[Dr Shastri-Hurst]

My hon. Friend makes a valid point. I have concerns about public confidence in the Bill without that additional safeguard, as this is such a consequential decision, but of course any advance directive would be predicated on having gone through those two stages first before capacity is lost. I feel that on this occasion additional tightening is necessary so that the public can be confident that a robust process has been gone through.

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.

[Kim Leadbeater]

I am sorry that it has taken me a while to find the relevant provision of the Bill. The discussion on the advance directive is a really interesting one, and I am glad that we are having it. Is the hon. Member reassured that clause 18(4) is very clear that on the day that assistance is provided to a patient, a doctor has to assess once again their capacity to make the decision to end their own life, check again that there is a clear, settled and informed wish to end their own life, and indeed check everything again on the day, including capacity? I believe that that will negate the issue around the advance directive.

[Dr Shastri-Hurst]

The hon. Member makes a reasonable point. I agree with her on many issues, but on this issue I have some reservations. Clause 18(4) says:

“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.

[Naz Shah]

rose—

[Naz Shah]

I am just trying to understand what the hon. Member is communicating. Under the Bill, if somebody has anorexia, diabetes or kidney failure and has the capacity to make that decision because they meet the criteria for the capacity to refuse treatment, will that mean that they can decide to sign up to this option?

[Dr Shastri-Hurst]

The Bill is very clear in determining that it is for those who have a progressive illness, disease or medical condition that cannot be reversed by treatment. On my reading of the Bill, it excludes that category of individuals who choose not to engage with treatment that in ordinary circumstances would prevent the progression or deterioration of their condition. I therefore do not see it as analogous with the hon. Member’s scenario of someone who could have a long life expectancy if they had taken their treatment, but who chooses not to. That is not captured within the Bill, in my interpretation.

[Naz Shah]

I am struggling with this, because it is clear from the evidence from our witnesses that that is the case where somebody has anorexia, for example, and they make that choice. As has been referred to plenty of times in the context of the Bill, the Mental Capacity Act has been used, and is sufficiently used, for people to withdraw treatment. Personally, I think that that is a pretty false equivalence, because when a person’s life support machine is turned off, the decision is made not by the person receiving lifesaving treatment, but by their loved ones.

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.

[Dr Shastri-Hurst]

With the greatest respect to the hon. Member, I think that she is conflating two issues. Someone can stop treatment under the MCA; over time, that will lead progressively to death, with some conditions—she gave the example of being a diabetic without insulin—but that would not be a terminal illness in reference to this Bill. The Bill is very clear that it is about an inevitable and progressive illness, disease, or medical condition that cannot be reversed by treatment. Diabetes, treated with insulin, is not a progressive condition that becomes a terminal diagnosis; it is terminal only by virtue of somebody refusing treatment, which therefore would not be captured within the Bill.

[Rebecca Paul]

I would like to understand why my hon. Friend thinks that diabetes could ever be considered reversible. It can be treated and managed, but surely we cannot turn back time.

[Dr Shastri-Hurst]

My hon. Friend makes a valid point—the Committee can see that I was an orthopaedic surgeon, not an endocrinologist. It is not necessarily a progressive condition; it is a condition that can be managed and maintained. It does not fall within the wording of the Bill. We are not talking about a condition that is inevitably progressive, and for which there is no treatment option available to pause, reverse or prevent its progression. We are talking about a relatively limited group of conditions that will inevitably lead to death when someone, for want of a less blunt phrase, has reached the end of the road in terms of their therapeutic treatment options.

[Jack Abbott (Ipswich) (Lab/Co-op)]

rose—

[Sarah Olney]

rose—

[Dr Shastri-Hurst]

I give way to the hon. Member for Richmond Park.

[Sarah Olney]

I am conscious that the hon. Member for Ipswich sought to intervene before me, but may I press the hon. Member for Solihull West and Shirley slightly on his point? When I asked Professor Sir Chris Whitty during oral evidence whether there could ever be a defined list of conditions that he would define as terminal, he was very clear that there could not be. Someone may suffer from a range of conditions. Most people who develop cancer survive, so cancer is a terminal illness, but not for everybody.

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.

[The Chair]

Order. I remind Members that the Committee will discuss terminal illnesses, and extending the list relating to terminal illnesses, under a later clause. Let us remain in scope this morning and continue the debate on the amendments before the Committee.

[Dr Shastri-Hurst]

I will keep my answer very brief by saying that I will return to hon. Lady’s point when we come to the clause on terminal illness, when perhaps I can elucidate, improve and work on my responses in a way that is conducive to understanding.

[Sarah Olney]

I look forward to it.

[Dr Shastri-Hurst]

I am aware that the hon. Member for Ipswich is waiting to intervene.

--- Later in debate ---

[Dr Shastri-Hurst]

The hon. Member is right: there is a huge spectrum of patients when dealing with these complex issues, and it would be absolute nonsense to arbitrarily say that anybody with depression is unable to make an informed decision on any issue. There are individuals who have mild depression—indeed, I suspect that most people with a terminal diagnosis would have some form of depression or reactive disorder, whether formally diagnosed or not, because of their circumstances. That does not mean that they are unable to make a rational, informed decision; we have to look at each patient individually. The Act is a tried and tested piece of legislation that doctors up and down the country use every day. Doctors over the road in St Tommy’s will be using it at this very moment, and they are adept at knowing and sensing when they need to escalate, whether by getting the opinion of a psychologist or a psychiatrist, because they have concerns about underlying issues. The Act is a robust piece of legislation, and we should be using it to enhance this Bill, not introducing further complexity, which will only put us into a quagmire of uncertainty.

[Danny Kruger]

My hon. Friend does not want uncertainty, so perhaps he could answer this question very directly: would he be content to see somebody who is depressed, and indeed suicidal, successfully apply for an assisted death?

[Dr Shastri-Hurst]

My hon. Friend puts it with his usual candour. He asked a straight question, so I will give him a straight answer: I think there is a difference between somebody who is depressed and somebody who is depressed and suicidal. I have no personal moral objections if someone who has a terminal illness, who suffers from depression and who has capacity as set out through the two-stage test in the Mental Capacity Act, ultimately wishes to end their life because of their terminal diagnosis. If they are doing it because they are suicidal as a consequence of their depression, that is a different and distinct issue. We are talking about individuals who want to end their life because of their terminal diagnosis, not because of their mental disorder.

[Jake Richards]

I keep making the point that clause 9 adds a different element to this process. It says that, when undertaking the assessment, one of the two doctors

“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?

[Dr Shastri-Hurst]

That is one of the additional safeguards in the Bill. This Bill has more in-built safeguards than any similar piece of legislation across the world. I think the hon. Gentleman makes a valid point: when a doctor has concerns about somebody’s mental state, they can escalate the case and seek further, specialist opinion.

[Kim Leadbeater]

Will the hon. Gentleman give way?

[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.