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

Debate between Jack Abbott and Stephen Kinnock

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[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.

[Jack Abbott]

Another example raised by the hon. Member for East Wiltshire was about hospitals under certain trusts—because of the word “premises”. In the Government’s view, would hospitals and other such facilities beyond hospices and care homes also be included within this new clause?

[Stephen Kinnock]

As I was saying, the scope of the term “premises” is unclear. Is it residential property, care home, hospice or indeed hospital? That is one of the challenges with the drafting of the amendment: the scope and definition of the term is not clear.

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

Debate between Jack Abbott and Stephen Kinnock

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Stephen Kinnock]

It is a well-made case; I am still reflecting on it, because of the somewhat complex nature of my role on this Committee, but I am inclined to support the hon. Member’s amendment.

Amendment 11 also seeks to amend clause 2(3). Our assessment of the effect of this amendment is that a person who has a mental disorder and/or a disability may not qualify under the Bill as terminally ill, even if they have an inevitably progressive illness and can be reasonably expected to die within six months. There might be concerns from the point of view of the European convention on human rights and the Equality Act if the amendment were passed as currently drafted, because its effect would be to exclude people from the provisions of the Bill if they had a disability or a mental disorder. That may not be the intention of the hon. Members who tabled the amendment.

I turn to amendment 181. In executing our duty to ensure that the legislation, if passed, is legally robust and workable, the Government have advised my hon. Friend the Member for Spen Valley in relation to the amendment. It clarifies that a person who seeks assistance to end their own life based only on a mental disorder or a disability, or both, would not be considered terminally ill for the purposes of the Bill. Such a person would therefore not be eligible to be provided with assistance to end their own life under the Bill. Someone who has a disability or a mental disorder, or both, and who also already meets all the criteria for terminal illness set out in the Bill would not be excluded by the amendment, as drafted. The amendment therefore brings important legal clarity to the Bill.

Amendment 283 sets out that a person who has one or more comorbidities, alongside a mental disorder within the meaning of the Mental Health Act 1983, would not be considered terminally ill by virtue of those comorbidities alone. The reality of modern healthcare is that many patients, not least those towards the end of life, will be dealing with several conditions or comorbidities. The term “comorbidity” in a clinical context can sometimes be used to distinguish the main problem that someone has experienced experiencing from additional but less serious problems, but it can also be used by those specialising in one or more other aspects of a patient’s care to distinguish their area of focus from other issues.

In the context of the Bill, the essential test is whether any morbidity, comorbidity or otherwise, meets the requirements in the Bill. Although it is unlikely that a terminal morbidity would be thought of as a comorbidity, it is not inconceivable that it might be, for the reasons that I have set out. The phrasing of the amendment, notably the term “alongside”, potentially increases that possibility. The effect might be that a condition that would otherwise be considered terminal would instead be considered a comorbidity alongside a mental disorder. The amendment would prevent a person with a mental disorder who would, but for the amendment, have been considered terminally ill from accessing assisted dying services under the Bill.

As I have said, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. However, to ensure that the legislation works as intended, we have advised the sponsor in relation to amendment 181, to further clarify the Bill such that only having a disability and/or mental disorder does not make a person terminally ill and eligible for assistance in accordance with the Bill.

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

Most of the discussion on amendment 181 has centred on the word “only”. Just to get clarification on this point, would someone with an eating disorder who was later diagnosed with a terminal illness still be able to access an assisted death, if that were required under the amendment?

[Stephen Kinnock]

My answer to that question is yes. My understanding is that so long as the terminally ill, six-month criteria are met, that person would qualify for assistance under the Bill.

[Jack Abbott]

Just to be absolutely clear for everyone in the room, and in case I was not specific enough, if that terminal illness is a result of the eating disorder, rather than, say, of that person also being diagnosed with a terminal illness such as cancer, would they be covered under amendment 181?

[Stephen Kinnock]

My understanding is that amendment 181 is clear that the qualification for accessing assisted dying has to be based on the definitions in the main body of the Bill. If passed by the Committee, the amendment will make it clear that an eating disorder does not qualify for access to that service. There has to be another, clear definition that does qualify under the terms set out in the main body of the Bill.

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

Debate between Jack Abbott and Stephen Kinnock

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Jack Abbott]

Q I will keep my question quite short. Is there anything about the law in either of your jurisdictions where you think there could be improvement, and that we can learn from in drafting our legislation here?

Dr Kaan: The thing I have been reading about that is concerning to me is the court approval that you seem to have written into your law. I heard your discussion this morning about how that might be done and whether it is a committee or the High Court and so on. I think that that is really going to limit access to this, and that makes the process a much lengthier one.

Again, these are people at the end of their life. People are not looking, by and large, to cut off a huge amount of their life; they are looking to shorten their death, not shorten their life. By making people go through a court appeal in addition to two qualified physicians, as well as the waiting period, I think that you are going to limit access for people who desperately want this option. It seems like that might be baked into your law, but I would say that that is a concerning feature to me. I think that you are going to limit access that way.

Dr Spielvogel: Something that it turned out was not in our law, but everyone thought that it was for a few years, and it really limited our practice, was that many people were under the impression that the physician could not bring up assisted dying with the patients, and that the patients had to bring it up themselves. That turned out not to be in our law, but that idea really hampered our ability to take care of patients, so I would strongly recommend that there not be anything like that in your Bill. People cannot make informed decisions for themselves if they do not know what their options are. While this is top of mind for all of you and for the doctors—we all know that this exists—even if this Bill becomes law, the general population is still not going to realise that it is an option.

I eat, sleep and breathe this. I am a primary care physician, and when I am going through the options with patients who are newly diagnosed with a serious life-threatening illness, I say, “Okay, here’s what disease-directed treatment would look like. We can continue with your chemo. Here are some side effects and complications that you might have, and here are the benefits of that. Here’s what palliative care or hospice care would look like.” Then I say, “I don’t know if you know this, but in our state we have this other option for people nearing the end of their lives when they have intolerable suffering. You can ask me to fill a lethal prescription for you to help end your suffering sooner.”

The number of times that people look at me and say, “You can do that? That’s an option here?” is astounding. I would say that nine out of 10 of patients I have conversations with have no idea that that is even legal. If they do not know it is an option, they are never going to ask for it. For physicians to do their jobs properly and deliver care to people, and for people to actually have a choice, physicians need to be able to discuss it with their patients.

Dr Kaan: I will just piggyback on that. I cannot count the number of times I have given a presentation or a talk to communities, and people—usually family members of someone who have died, not using this law—have come up to me afterwards and said, “Thank you for what you said. My loved one was interested in having this information, or wanted to talk to their doctor about it, but their doctor never brought it up, so we weren’t sure if we should be bringing it up.” It is a huge burden to put on patients and their loved ones if they have to bring it up themselves. I would highly caution against any sort of language that requires that, because it is just not fair to them. They are already going through so much and, as Dr Spielvogel said, you cannot have an informed decision-making discussion with a patient if they do not have all the options available for discussion.

[The Minister for Care (Stephen Kinnock)]

Q I want to drill down a bit more on the question of training. Could you say a bit more about how the training works? Is it mandatory for everyone who takes a medical qualification to a certain standard? How many class hours are required? Is there an in-practice shadowing process? Is there an assessment process to verify that the person is qualified as a result of the training? I am just trying to get a better sense of the detail of the training. I will perhaps start with Dr Kaan.

Dr Kaan: That is a really important question, because this is a really important topic in the United States. Our laws are very clear that participation is voluntary, so there is no such mandatory training across medical training in general. It is always voluntary. If a physician or provider wishes to have training, they can seek it out. What is available and the standard of care differ from state to state. Certainly, in the state of Washington, where I am the medical director of the organisation that is most largely involved with this, the bulk of my job is doing training, mentoring and shadowing. There is no exam at the end of that process, but there is certainly shadowing and a feedback process.

I am also heavily involved with the Academy of Aid-in-Dying Medicine, which has been very active in creating professional training. We have a Journal of Aid-in-Dying Medicine, which is a peer-reviewed journal that puts out articles that are relevant to the topic. The Academy of Aid-in-Dying Medicine is now undertaking certification pathways, so each level of provider—social workers, chaplains, physicians and anyone else who might be involved in the aid-in-dying process—will be able to take these certifications. A more uniform education system will be available. We are just at the beginning of creating those, but it is very exciting, and we are very happy to have those out. A lot of resources are out there in the world already, in general, to train providers in how to do this well, and it would be really smart to have something in your Bill that outlines what the training should be, whether you will make it mandatory or voluntary and perhaps some sort of certification pathway.