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

Neil Shastri-Hurst Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

If we are to acknowledge the trend of health inequalities, we are presented with an unquestionable quandary when it comes to regulating assisted dying. People who fall under the protected characteristics, and those from less privileged backgrounds, may be more likely to be offered assisted death instead of more involved palliative care, whether that is due to unconscious bias, stereotyping or discrimination. By removing the option of a healthcare professional first raising assisted dying with a patient, we seek to alleviate the risks that already marginalised groups would be subject to with regard to assisted dying if a healthcare professional suggested it to them first.

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

It is a pleasure to serve under your chairmanship, Mrs Harris. I wish to concentrate my remarks on new clause 6, which I tabled, but also to speak to amendments 8 and 124.

To be clear, new clause 6 is a probing amendment that was tabled to air the debate on the record. I tabled it because of the interplay between the Bill as currently drafted and section 26(1) of the Mental Capacity Act, which sets out that a

“decision has effect as if”

the individual

“had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued.”

Of course, an advance directive relates to decisions around the removal of treatment. The mischief that I was seeking to address is that there are patients who, were this law to be enacted, would continue with their palliative care treatment right to the very end, before they chose to have an assisted death. Technically, there could be a scenario where that person, from the point at which they have gone through the two-stage assessment by a doctor and it is been approved by the panel—if that is approved in subsequent amendments—loses capacity after they have set out a desire to end their life through an assisted death, but there would be the option to remove the palliative treatment options at that point. There is a conflict in respect of an advanced directive that would enable the assisted death to take place, which would involve the removal of care.

[Danny Kruger]

I am grateful to my hon. Friend for setting it out so clearly, but I would like a little more clarity because I do not fully understand. My understanding from the Bill is that at the moment of the administration of the fatal drugs—the final act, as it is called—the administering doctor has to be confident of capacity. Were a person no longer conscious at that point, the doctor would not be able to proceed.

[Dr Shastri-Hurst]

The purpose of new clause 6 is to get clarity on that issue, because of the interplay with section 26 of the Mental Capacity Act, which states that if a patient

“has made an advance decision which is...valid, and...applicable to a treatment...the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued.”

I am not suggesting for a moment that seeking an assisted death is conventional treatment in the normal sense, but there will be patients who seek an assisted death and have palliative care treatment along the way, so there could be a technical scenario whereby the palliative care treatment is withdrawn for the assisted death to take place.

There is an element of mischief in my probing new clause, but it is to air the matter in debate. In truth, intervention there are a variety of options with any withdrawal of treatment or any treatment. I wanted that on the record. I have had assurances from the hon. Member for Spen Valley that that is clearly not the Bill’s intention—in many ways, I am arguing against my own new clause. Of course, this is a distinct scenario from an advance statement—the much more proactive step of, “These are the treatments or options that I would like if I lose capacity at a future date”—which has no legal footing. An advance directive, in comparison, is very much concentrated on the withdrawal of care. I do not propose to divide the Committee on the new clause; I merely tabled it so that this could be discussed.

Let me turn to amendments 8 and 124. There has been much discussion and worthy debate on the position of Montgomery, which takes me back to my days as a pupil barrister grappling with issues of consent. I fear that we may be going down a rabbit hole in discussing Montgomery in this context. I agree with my hon. Friend the Member for East Wiltshire that an assisted death is not typical medical treatment in the normal sense of those words; it is a wider holistic medical intervention. Therefore, my understanding is that Montgomery would not apply in those circumstances.

However, some of the principles around Montgomery way well have justification. My concern about the amendments is that while it is quite right that there should be no requirement to instigate those discussions, it would be equally wrong not to allow the flexibility to have that conversation in appropriate circumstances. The reality of clinical practice is that there are consultations within consultations. A patient who comes to a surgery to see their doctor may not feel able to articulate what they truly feel. They may give subtle hints, which doctors pick up during the course of a long career—to put it in lay terms, doctors read between the lines.

There is interplay with the principles of Montgomery, which is clear that a doctor should discuss issues where a reasonable person in the patient’s position would attach significance to them or the doctor is, or should reasonably be aware, that that particular patient would attach significance to them. My hon. Friend the Member for East Wilshire asked for examples of that. There are scenarios where there are subtle hints from a patient who has been given a terminal diagnosis. They ask, “What is the implication of this terminal diagnosis? How am I going to die, doctor?” The doctor says, “There are variety of ways in which this may manifest itself” and goes through them. Some of them may be more tolerable to the patient than others.

--- Later in debate ---

[Danny Kruger]

I am grateful to my hon. Friend for setting out the scenario so clearly. To summarise, he is suggesting that if a patient with bowel cancer says to their doctor, “How am I going to die?”, the doctor would say, “Well, one possibility is that you will die very badly, vomiting faeces,” to which the patient says, “My goodness, I’d never thought of that. What can we do about it?”, to which the doctor should say, “Well, there’s always assisted dying.” I summarise and condense the conversation, but that is the conversation that my hon. Friend is envisaging, is it not?

[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.