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

Debate between Jack Abbott and Naz Shah

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Naz Shah]

I thank the hon. Member. What he said is really helpful.

I want to come back to the issue of opioids. As someone who suffers from chronic pain, my understanding is that I have a choice over whether I take opioids or other medication. So when people are allergic to opioids, they can potentially access other medication for pain relief.

[Jack Abbott]

A lot of the focus in the last few minutes has been about a care home having already made it clear that it does not support the process of assisted dying and the fact that anyone entering it would therefore know that. However, there is a clear scenario where some care homes might change their position over time. Someone may be in a care home for many years, but then the care home might change its position and say, “Actually, now we do not support assisted dying.” In that scenario, people would actually have gone into that setting thinking that it supported assisted dying.

Although I am sympathetic to the issue of place being made clear, it has real ramifications. Again, I do not think it is as black and white as saying, “This care home already had a set position.” Some care homes or other settings might change their position over time, even when residents are in situ for a long time. That is the big problem with this particular clause: the situation is not as straightforward as some Members have perhaps suggested today.

[Naz Shah]

My hon. Friend makes a very valid point: it is not straightforward. That is why people are tabling amendments and having this discussion—to iron this issue out and make sure we nail it, to make the process as safe as possible.

There are laws in our country that protect people’s religious views—for example, we have the Equality Act 2010—and those laws are there for a reason. Speaking to all the amendments, I would not want to see hospices not being funded because they take a certain position. Also, from an employer’s perspective—I appreciate the scenario that has been mentioned, and I will come back to it—they may be recruiting in accordance with their values. We are all in politics, and we all sign up to a particular view of politics. When we recruit our staff, we put on the application form, or other information, that we would like applicants to believe in our value system. That is not discriminating against somebody who has a different value system. That would be my response.

--- Later in debate ---

[Jack Abbott]

I appreciate that, but as my hon. Friend has said a number of times over the last few weeks, some of these things unfortunately do happen. As I am sure we all do, I have had casework involving people with guide dogs saying that they have been refused certain services, including taxis, even though that is a civil offence because they have a guide dog with them. We have said a number of times that there are flaws in every single system. I appreciate that we want to adopt a good-will attitude, and I am sure the vast majority of settings across the country will operate on that basis, but we know that, in certain circumstances, that is not always the case. That is why, if we put anything in the Bill, it needs to have real clarity and not unintended consequences.

[Naz Shah]

My hon. Friend is absolutely right that we need to clarify this.

To sum up, this comes back to some of the questions I have for the Minister, and I wonder whether he can answer some of them. I say that especially because the Committee has had lots of debates on amendments tabled by the Government via my hon. Friend the Member for Spen Valley giving the Secretary of State statutory duties. Perhaps the Secretary of State will be able to clarify this issue and make it watertight using regulations.

Have we had an assessment of what the impact would be on the provision of healthcare if assisted death were permitted in either a hospice or care home, and is the Minister happy to share that assessment with the Committee? For example, if palliative care specialists are saying, “X amount of people would no longer want to be involved, so there is a real risk of an exodus of specialists from hospices,” we need to know whether there has been an assessment of that. Perhaps the Government can help us to understand that real concern from palliative care specialists.

Given that the Minister mentioned his visit to a hospice this week, has he had any discussions with Care England care homes about allowing this process to happen in care homes themselves? How have the concerns of clinical staff about allowing an assisted death in their healthcare facility been assessed, and have those concerns been put to him? How many staff have indicated that they would need to leave the NHS, care providers or hospices if an assisted death were mandated on their premises?

Coming back to beliefs, there is also the element of charitable bodies. Have we spoken to the Charity Commission about the impact on those bodies if they were pressured by the Bill into changing their charitable aims? Would they be protected from providing assisted death because of their charitable aims?

For me, this debate has raised more questions than answers, and there is much more discussion to be had. I am happy to listen to the hon. Member for East Wiltshire, as I can then intervene and probe further.

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship this morning, Ms McVey, even though it is a little later than originally planned.

Amendment 480 is intended to extend the category of those protected from being obligated to participate in the provision of assisted dying under clause 23 from registered medical practitioners, registered nurses and registered pharmacists or pharmacy technicians to all individuals. The amendment also seeks to clarify what an individual can refuse to do under clause 23(1), by setting out a non-exhaustive list of activities under the Bill that an individual would not be obligated to participate in. The amendment also specifies that the ability not to participate in the provision of assisted dying does not override any duty to signpost someone to information about assisted dying; to perform clerical, secretarial or ancillary acts; or to perform life-saving acts or grave injury-saving acts.

The amendment would introduce significant legal uncertainty and may mean that a person who had opted in to providing services under the Bill could refuse to continue to do so or could use clause 23 as a justification not to perform their duties as described in the Bill. For example, they may use the amendment as justification for not checking eligibility criteria, discussing prognosis or palliative care options, or performing other requirements under the Bill.

Amendment 480 may also conflict with other provisions. It states:

“no individual is under any duty…to be involved, directly or indirectly, in the provision of assistance”,

in accordance with the Bill. That may, for example, mean that although doctors are required under the Bill to notify a cancellation, they would be allowed to refuse to do things under the Bill, even if they have opted in to providing assisted dying services. It is not clear which provision would take precedence, which could allow the doctor to decline to notify a cancellation, by arguing that they are relying on clause 23(1).

Amendment 483 is intended to extend

“the range of activities which medical practitioners and other healthcare providers are not under an obligation to provide to include activities closely related to the provision of assistance”

under clause 23(1).

Amendment 484 is intended to expand the protection from being subject to a detriment by an employer at clause 23(2), to include where a registered medical practitioner or health professional refuses to participate in activity closely related to the provision of assistance. The term,

“activity closely related to the provision of assistance”,

is not defined, and that could create uncertainty as to what types of activity it is intended to cover.

The Bill does not, as currently drafted, specify where the provision of assistance may or may not take place. Amendment 441 would prevent there being any obligation on a care home or hospice regulated by the Care Quality Commission or Care Inspectorate Wales to permit the provision of assistance to be carried out on their premises. The effect of the amendment may be to limit the places where assistance could be provided. It may thereby reduce access to an assisted death for those residing within a care home or hospice, if a care home or hospice did not wish to allow an assisted death to be provided on its premises. The amendment could preclude some people from accessing services under the Bill if they were near the end of life and leaving their usual place of residence was therefore impeded. It may result in inconsistent treatment for patients when seeking to access an assisted death. That could potentially engage a person’s rights under article 8 of the ECHR—the right to respect for private and family life.

Amendment 481 has two parts. The first aims to ensure that employees cannot participate in the assisted dying process in the course of their employment if their employer has chosen not to participate in assisted dying. The effect of the amendment could be to limit the places where assistance would be provided, and it may result in inconsistent treatment for patients when seeking to access an assisted death. That could engage a person’s rights under article 8 of the ECHR—the right to respect for private and family life.

The explanatory notes suggest that the second part of the amendment seeks to ensure that employers require employees to provide or not provide assisted dying under schedule 9 of the Equality Act 2010. That schedule enables an employer to specify that having a protected characteristic is a requirement of a job when having that characteristic is crucial to the post and a proportionate means of achieving a legitimate aim. The ability to specify occupational requirements is conferred by schedule 9 of the Equality Act, and reference to it in this amendment would not have any additional effect.

The purpose of new clause 22 is to provide that the owners or occupiers of a premises would not be obligated to permit the self-administration of an approved substance on their premises. This right to refuse would not extend to a person who has an interest in the land but who is not occupying or operating on those premises, such as a landlord. It is unclear if the term “premises” would apply to a residential property, care home or hospice. As a result, the amendment may mean that someone who is terminally ill and is residing in, for example, a care home or a hospice could be required to leave that care home or hospice in order to receive assistance under the Bill if the care home or hospice owner did not wish to allow assisted dying on their premises. That could engage a person’s rights under article 8 of the ECHR—the right to respect for private and family life.

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

Debate between Jack Abbott and Naz Shah

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Jack Abbott]

Absolutely, I know. I am sure the Committee supports him as well.

I would also point the hon. Gentleman to proposed new subsection (13), which my amendment 532 would introduce, saying what “specific actions” can legally be taken, for example, if

“there is a greatly prolonged time to death”,

the person has been “rendered unconscious” or

“the person is otherwise undergoing complications.”

That quite clearly states that we expect the Secretary of State, through this amendment, to take specific co-ordination actions on that. Under proposed new subsection (12) alone, the Secretary of State would have to make provision on that, which could lead to what the hon. Gentleman is alluding to. However, what I propose in proposed new subsection is very clear: that we would expect specific actions from the Secretary of State in that area.

[Naz Shah]

My hon. Friend is making an important speech. He talked about percentages earlier. Is he aware of a study in the Netherlands that concluded that 21 people—18% of the cases in the study—were assisted with lethal injection? In five of those cases, that was because the person could not swallow, but in the rest, they were unable to complete.

[Jack Abbott]

I have used the statistic of 10%; we might find additional statistics from different jurisdictions that put that figure slightly higher or slightly lower. The point I am trying to make is that this is a relatively uncommon occurrence; none the less, this is an area of the Bill that we can make stronger with additional provisions.

I will make some progress on amendment 532. I have made the basis of my point and want to get on to amendment 533. As I have said, amendment 532 seeks to provide clarity on what doctors can do if the procedure fails or is failing by stipulating that the Secretary of State must specify in regulations what actions the co-ordinating doctor can legally take if there is a prolonged time to death; if the person has been rendered unconscious or unfit to make a second attempt at self-administration, but has not died; or if the person is undergoing complications following the initial attempt.

While there is existing GMC guidance, if no further guidance comes forward in the coming years, we risk placing some doctors in an incredibly difficult position. We always say that we should abide by good practice and the experience of many doctors, but additional cover is no bad thing. We need to say what doctors are legally permitted to do in the event of a patient undergoing severe complications. Leaving aside the doctors, that presents a risk to the patient, who may suffer needlessly and intolerably because the co-ordinating doctor does not know what they are legally allowed to do and is thus seeking to avoid legal ramifications of actions. We do not want them to take steps to respond to those complications or support the patient to die in a painful manner.

I will speak briefly to my amendment 533, which is about where assisted dying can take place. The Committee has already touched on that, and I do not want the Bill to be too prescriptive, which is why I have not stipulated exactly where the locations should be. However, this question was raised a number of times in the submitted written evidence. It is incredibly important that we address this question to ensure that assisted dying takes place at a certain location and does not have a detrimental effect on that location or community, and that the implementation of assisted dying does not exacerbate existing healthcare inequalities or deepen the mistrust of the healthcare system that exists among some ethnic minority communities in particular.

We have a duty to ensure that anyone seeking an assisted death under the Bill feels that it is safe to do so, is able to experience the positives of assisted dying and is not traumatised or retraumatised by the process. That is not possible if assisted dying takes place in settings in which people feel unsafe, which they feel unable to control or in which they have no agency. The amendment seeks to ensure that the question of where assisted dying can take place is properly addressed and that the possible impacts of assisted dying taking place at any particular location are fully considered. Only then can we address and mitigate its possible detrimental impacts.

That is a particularly important point because the criterion in the Bill that the doctor must remain with the patient until they have died realistically precludes assisted dying taking place at home, as there may be a prolonged time to death. As my hon. Friend the Member for Spen Valley said, 86% of patients in Western Australia died within the hour, but 14% took longer than that. To use another comparison, in Oregon, 87.7% of those who died via an assisted death in 2023 did so at home. If we are essentially precluding assisted dying from taking place at home because of the stipulation that a doctor has to be in attendance, we must answer the question of where it can take place.

In written evidence, Sue Ryder and the National Care Forum cited concerns about the impact on the wellbeing of staff and the other residents of hospices and accommodation-based services, should assisted dying take place within those communities. Dr Jamilla Hussain, in arguing that the question of where assisted dying could take place needed to be addressed, stated that her consultations with

“ethnic minority groups across Bradford highlighted the risk that AD could significantly deepen mistrust in healthcare services, including but not limited to palliative care.”

She argued that that needed to be considered when determining where assisted dying would take place, and because of that it would be preferable to avoid

“healthcare settings that these communities rely on, such as hospitals and hospices.”

Again, amendment 533 does not seek to specify where assisted dying should take place—I think further work is possibly needed over the coming months and years before this policy is potentially implemented—or to prohibit any particular location, I must add. The rationale behind the amendment is to ensure that through extensive consultation with relevant parties, the possible impacts of assisted dying taking place at any particular location are fully and comprehensively considered, and thereby any potential harm is addressed and mitigated against.

--- Later in debate ---

[Jack Abbott]

I appreciate that point. Throughout this process we have spoken about the absolute need to ensure that very good palliative care options are being presented to everybody along this pathway. I do not think you can separate care homes and hospices from the Bill, but I fully appreciate and sympathise with what the hon. Gentleman is saying. As I have said, there may be some hospices that are simply not appropriate for this, so although amendment 533 does not seek to put that on the face of the Bill in terms of precluding any particular areas of our healthcare system, it would require the Secretary of State, through consultation, to make sure that the legislation is used properly, and make suitable recommendations.

[Naz Shah]

I rise to speak to amendment 436, tabled my hon. Friend the Member for York Central. The amendment concerns what would happen after a patient has suffered complications while going through the administration of lethal drugs. Let me stress that we know that people suffer complications when they are undergoing assisted deaths. Unfortunately, one thing we do not know is how common those complications are. Another thing we lack is data that would allow researchers to investigate whether certain drugs, perhaps in combination with certain medical conditions, were more likely to cause complications.

The reason that we do not know those things is because of the many gaps in the data collected in places that have assisted dying laws. It has been mentioned before, but very much bears mentioning again, that the Australian states’ reports on assisted dying do not publish data on complications suffered by patients who self-administer drugs, and that is the overwhelming majority of assisted deaths in Australia.

Western Australia’s most recent report does tell us how frequently there were complications in the cases that involved practitioner administration of lethal drugs—4.3% of those deaths were affected. I understand that the Bill does not allow practitioner administration, but that is not the relevant point. What is relevant is that first, the Australian data shows that some people given lethal drugs suffer complications, and secondly, those complications were ones that we would not wish on someone in their last minutes or hours of life. For example, five out of 198 practitioner administration deaths involved “other complications”, which included people coughing and/or reporting a burning throat after they were helped to swallow drugs,

“hiccups with gastric reflux, involuntary muscular contractions, and delayed loss of consciousness.”

Western Australia could be much better than other states on average in avoiding complications, or it could be worse. I am afraid that we really do not have the robust data that would allow us to make those comparisons. I repeat: the Australian state does not publish data on complications affecting the majority of assisted dying cases. They do not because they cannot, since no one is mandated to stay with the patient and observe their condition. We do not know, therefore, how common those complications are.

Record-keeping in other jurisdictions is also concerning. This House’s Health and Social Care Committee examined the records kept by the state health department in Oregon while inquiring into assisted dying. They found that Oregon authorities kept very poor records into how many patients suffered complications and what those were.

Amendment 436, tabled by my hon. Friend the Member for York Central, would take a very different approach. Under this amendment, the doctor attending the person having an assisted death would have to make “a detailed record” if the person suffered complications. They would then have to declare that the person had suffered complications, on the final statement concerning that case. Finally, they would have to make a report, to both the chief medical officer for either England or Wales and the voluntary assisted dying commissioner.

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

Debate between Jack Abbott and Naz Shah

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Naz Shah]

I agree. Sometimes it will be the simple thing of asking the question as a human being—among all the conversations that are happening, just stopping and asking why.

[Jack Abbott]

I appreciate that my hon. Friend has given way a number of times, but I gently suggest that we already know the crux of the Bill and what we are debating. The “why” is that people with a terminal diagnosis, with six months to live, would like a course of action to end their lives in a pain-free way and to have the autonomy to do so.

We are in danger of over-legislating for a range of different permutations that could potentially happen in conversations. I agree that these kinds of questions are absolutely crucial, but it may satisfy my hon. Friend that amendment 21, to which we agreed a few moments ago, requires medical practitioners to take training on

“domestic abuse, including coercive control and financial abuse”.

That sort of protection and safeguard has already been agreed to.

We will rely on highly specialised individuals to pick up on these issues. They may want to explore, through further questioning, why people are making these decisions but we cannot legislate for all the different sorts of conversations, and all the emotions that may be going through people’s minds. If someone comes back and says, as my hon. Friend put it, “Well, it’s none of your business,” or whatever the answer may be, we will rely on the specialised professionals to pick up on danger signs. However, that would not necessarily lead them in every single conversation to have a suspicion of the patient’s motives. Life and conversation do not work like that and we cannot legislate in that way.

[Naz Shah]

I absolutely agree that life does not work like that. Life is very complicated and that is why I want the conversation to happen. My hon. Friend referred to amendment 21, which we have just agreed to. I spoke extensively about why that is a brilliant amendment that moves us towards much more safeguarding, but I also think that it does not go far enough for women, marginalised communities and people from ethnic minority backgrounds. I genuinely do not feel that amendment 468 is about over-legislating. It is just stating an obvious fact: sometimes, even in normal life, we go around the houses to get to a conversation and get to the right point. That is what I want to get to.

[Jack Abbott]

To follow up on the example my hon. Friend gave earlier, if—to be glib—someone said, “None of your business”, she would want the doctor to keep probing. At what point does that end? If someone genuinely does not want to have that conversation and says, “I want to end my life because I have a terminal diagnosis. I live in fear of the pain that could await me and I don’t really want to go into much detail,” where does that end? Where does that conversation continue to?

[Naz Shah]

My hon. Friend makes my case for me. If that person says, “It’s none of your business, but I have so much pain,” at that point, automatically, as we naturally do as human beings—

[Jack Abbott]

But this is a pure example.

[Naz Shah]

That example is a good example that strengthens my position.

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

Debate between Jack Abbott and Naz Shah

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

I thank my hon. Friend, and my hon. Friend the Member for Penistone and Stocksbridge, for making it clear that they would not vote for the amendment. I also thank the hon. Member for Harrogate and Knaresborough for bringing forward an amendment that discusses those issues. However, whether it is withdrawn or not, it is an amendment that we are debating and talking to.

The hon. Member for Harrogate and Knaresborough, who tabled the amendment, no doubt feels very strongly that the conditions of patients with neurodegenerative diseases make a case for relaxing the six-month prognosis to 12. There may well be a good case for doing so, but we can only consider the case for extending the prognosis to 12 months because of the challenges created by neurodegenerative diseases if we have first considered that extremely complex subject.

We cannot say that the Committee has studied the difficult subject of neurodegenerative diseases and how they would affect the administration of the Bill. We have not heard from witnesses on the subject, and we have not been able to ask them questions. We did solicit evidence on whether neurodegenerative diseases would affect the ability to self-administer lethal drugs, but we have not had time to study the written evidence.

I appreciate that the hon. Member for Harrogate and Knaresborough is not going to press the amendment to a Division, which leaves some of what I wrote earlier obsolete. I appreciate the hon. Member’s efforts. We are sent here by our constituents to represent them to the best of our ability. I certainly try to do that, and I know my hon. Friend the Member for Spen Valley always tries to do that—I have no doubt that the hon. Member for Harrogate and Knaresborough and all others are trying to do that. We vow to represent our constituents, and had the amendment gone to a Division I would not have been able to support it, simply because we cannot make those difficult decisions without being properly informed. We cannot make up our minds to change the Bill because of a complex set of diseases.

[Jack Abbott]

Just as a point of clarification, I remember asking one of the witnesses at our oral evidence sessions about this very issue—Sir Nicholas Mostyn, an esteemed judge who has written and spoken about the issue extensively. We asked his views about neurodegenerative diseases and extending the time to 12 months, so it was something that we were aware of and discussed as a Committee. In fairness to the hon. Member for Harrogate and Knaresborough, it has not come completely out of the blue.

[Naz Shah]

I agree that we did hear that, but we did not hear from experts in the Bill, and at that point it was not discussed. While I acknowledge my hon. Friend’s point that we did speak to Sir Nicholas Mostyn, we did not have further evidence, and this measure was not in the Bill when we took evidence from those witnesses.

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

Debate between Jack Abbott and Naz Shah

Tuesday 11th February 2025 Public Bill Committees

[Naz Shah]

The hon. Member for East Wiltshire answered that question eloquently earlier. Although the outcome is the same, we are asking two different questions. The question is not about turning off and unplugging a machine; it is about whether someone will take drugs to end their life.

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

To follow the basic premise of your argument—

[Jack Abbott]

It is not your argument, Sir Roger; it is my hon. Friend’s argument. I apologise.

To follow the basic premise of my hon. Friend’s argument, she is saying that the Mental Capacity Act is not tried and tested for what we are discussing. However, by definition, neither is this amendment; if anything, it is even worse, because words such as “ability”, which we are discussing here, have absolutely no basis, as was admitted by the hon. Member for East Wiltshire. On that basic premise, my hon. Friend will not agree with any amendment that is tabled today, because none of them is tried and tested. Is that correct?

[Naz Shah]

My hon. Friend is not wrong, in so far as there can be two truths. There is a truth, for me, that the Mental Capacity Act does not deliver what we need it to deliver, and that is the concern we have heard from people who have given us evidence. We have not talked about the word “ability”—as hon. Members have pointed out, it is not set out in law—so there is a conversation to be had.

As my hon. Friend the Member for Spen Valley, the promoter of the Bill, clearly stated, this is about strengthening the Bill and bringing the best Bill to Parliament to give people a choice. That is what this is about.

[Danny Kruger]

The hon. Member is making such an important speech, and I am very grateful to her. This is a crucial discussion. The hon. Member for Ipswich suggested that the amendment would make things worse because it would apply a new test.

--- Later in debate ---

[Naz Shah]

I am grateful to the hon. Gentleman for his correction. To clarify, I do not think anybody in this House disagrees in principle with the idea of not letting people suffer. I am very much about principle, and I came to this Committee very much in that spirit. When I was asked to join this Committee, I had to sleep on it, and I now realise why.

I am grateful for the interventions from my hon. Friends the Members for Rother Valley and for Ipswich. There are a couple of things that are important for us to understand. The Mental Capacity Act has not been tried in any of the other jurisdictions across the world on which we are basing this law, so we cannot make a comparison.

On the issue of whether it is either/or—whether it is the Mental Capacity Act or the word “ability”—the Secretary of State has the power to change that. If we are to be true to the spirit in which we have come to this debate to make the Bill as safe as possible, given that so many psychiatrists and experts have said that they are not convinced that the Mental Capacity Act is fit for purpose in this regard, surely it is incumbent on us to make that case.

[Jack Abbott]

My hon. Friend said that the Mental Capacity Act is not tried and tested, and I was challenging the premise that we should apply a concept that is not tried and tested in this or any other country. She is saying, “I can’t support the Mental Capacity Act in its current form because it is not tried and tested,” but, following that argument, she would presumably not support this amendment or any others because what they propose is also not tried and tested.

[Naz Shah]

This amendment is an attempt to have that conversation and to strengthen the concepts that we are debating. That is the whole point of the Committee. As my hon. Friend the Member for Spen Valley said, there is no point in having witnesses if we do not listen to what they say. This is what the witnesses said.

My hon. Friend the Member for Ipswich makes a valid point. He asks whether I would, by that definition, support this amendment. I support it because it has led to a debate that we have had all morning, and that we are carrying on into the afternoon. As it is, the Bill does not give me confidence, whether it is due to the use of the Mental Capacity Act or the definition of “ability”. I feel that it needs to go much further, perhaps through the Secretary of State tabling another amendment at a later point.