Terminally Ill Adults (End of Life) Bill (Twenty-sixth sitting) Debate
Full Debate: Read Full DebateNaz Shah
Main Page: Naz Shah (Labour - Bradford West)Department Debates - View all Naz Shah's debates with the Ministry of Justice
(2 days ago)
Public Bill CommitteesIn considering the offer of any health or care-related activity, the appropriateness and suitability of the place is always in people’s mind, and clearly that varies. As I mentioned yesterday, we already have a licensing regime under which the CQC specifically licenses places for particular activity. I think my hon. Friend is right, but this is a normal part of decision making in the provision of health services and I do not think we should try to constrain it in primary legislation. However, as I started by saying, I recognise that we must enshrine the rights of individual conscientious objectors, which I think the hon. Member for East Wiltshire is trying to do with amendment 480, and I hope that we can do that, through some route, with the Bill.
I rise to speak to amendments 441 and 484, tabled by my hon. Friend the Member for York Central (Rachael Maskell), and in support of new clause 23, tabled by the hon. Member for Reigate.
Amendment 441 would amend clause 23 so that there would be
“no obligation on any care home or hospice regulated by the Care Quality Commission or the Care Inspectorate Wales to permit the provision of assistance under this Act on their premises.”
I think it is clear that “assistance” in this context means the act of administering lethal drugs. That is the sense in which the word is used in clause 18, for example.
Amendment 484 would tighten that restriction somewhat by providing that there is no obligation on any hospice to permit
“any activity closely related to the provision of assistance under this Act”.
New clause 23 would also apply to all regulated care homes and hospices in England and Wales. It would provide that none of those organisations can
“be subject to any detriment by a public authority as a result of not—
(a) providing assistance in accordance with this Act, or
(b) permitting such assistance to take place on their premises.”
The new clause would also provide that no public authority can make its funding for a regulated care home or hospice dependent on the care home or hospice agreeing to provide assisted dying or to allow assisted dying to take place on its premises.
All the amendments have the same goal: to ensure that the Bill does not harm this country’s hospices. We have heard from many witnesses how much hospices do in providing palliative and end-of-life care. Caring for people who are close to the end of life is difficult and vital work. The people who do that on our behalf include some of the very best in our society. We should all hold ourselves responsible for not making the task of hospices more difficult. The idea that the Bill might do that has been raised with us by people working in this country’s hospices.
Hospice UK takes a neutral position on whether assisted dying should be legal in England and Wales, but it has set out clear positions on how the Bill should and should not affect hospices. On funding, its written evidence TIAB 36 states:
“If assisted dying is legalised and becomes part of the health service, steps should also be taken to ensure there is no financial detriment to any hospice, whatever their positioning on the practice.”
I agree strongly with that argument, for several reasons. The hospice sector in this country receives a mixture of public funds and private or charitable money, including donations and the proceeds of charity shops and fundraising events. Like the rest of the population, the people who work in and run hospices have a mixture of views on assisted dying. Many have strong objections on various grounds. If public funds were made dependent on hospices agreeing to assisted dying taking place, we would see several things happen, all of them bad.
In evidence to the Committee on 28 January, Dr Sarah Cox, a consultant in palliative care and president of the Association for Palliative Medicine, said:
“I am also concerned about our palliative care workforce, which we know is already in crisis. Eighty-three per cent. of our members told the Royal College of Physicians in 2023 that they had staffing gaps, and more than 50% were unable to take leave because of those staffing gaps. Forty-three per cent. said that if assisted dying were implemented within their organisation, they would have to leave. This has a massive impact on palliative care, in terms of its potential to develop both our funding and our workforce, who are really concerned about this.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 70, Q83.]
In evidence to the Committee on 29 January, Toby Porter, chief executive officer of Hospice UK, said:
“If hospices were involved in assisted dying, there is a theoretical risk that that would just reinforce an inaccurate perception about hospice and palliative care: the myth that you are helped along your way by doctors in hospices and hospitals. That is one risk.
More briefly, the second risk relates to the duty of care. What do you need for hospice and palliative care services? You need adequate resourcing, which means staff and finances. In terms of staff, the real fragility in the hospice and palliative care sector is a shortage of clinical staff—that is shared nationally with the NHS and other healthcare providers.”
Mr Porter also mentioned the evidence of Dr Cox. He told us:
“You will know from Sarah Cox’s evidence that the majority of palliative care consultants hold views against assisted dying, many of them very strongly. If the consultants felt, for example, that they could not keep their distance from assisted dying in a 12-bed hospice unit in the way they could in an 800-bed hospital, you could very easily see that if this was not done properly and the consultants deserted the hospice sector, you could no longer offer the specialist care that is so important to the Minister, the NHS and every health and social care provider.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 196, Q256.]
Many people would be entirely willing to enter a care home or hospice if they thought they might receive assisted dying there, but others already fear that they might be pressured into taking assisted dying if they enter palliative care. They may be wrong to fear that, but they do. We heard evidence on that point from Dr Jamilla Hussain, who gave evidence to the Committee on 29 January:
“I work predominantly with an ethnically diverse population. I have gone into those communities and I have spoken to them about this Bill. What they say overwhelmingly to me is, ‘We’re scared. We’re really fearful that this is going to result in a disproportionate impact on our community. We have seen that through covid and we’re so scared. We already don’t access your services. We’re really worried that we won’t want to access them any more, and we won’t want to access the hospitals.’”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 187, Q245.]
That fear will only grow if we use public funds to oblige hospices to permit assisted dying on their premises. Hospices should be able to say clearly to their patients that they do not allow assisted dying to take place on their premises. The dedicated professionals who work in hospices and who deeply object to people being helped to die with lethal drugs must also be protected. They should be free from having to work on premises where something they might disagree with happens.
I anticipate that some hon. Members may argue that amendment 484 draws its restrictions too tightly. They might argue that it would mean that a doctor working on a hospice’s premises or making a visit to a patient in a hospice could not have the preliminary discussion about assisted death with that person. However, I want to be clear that these measures relate to the provision of assistance under this Bill. “Provision of assistance” is the phrase used throughout the Bill to refer not to the preliminary discussion, nor to the interviews with doctors, nor to the panel process, but to that part of the process at which the person takes lethal drugs with a doctor present.
This is obviously a difficult and sensitive area, but does the hon. Lady think, for example, that a women’s refuge run by a Catholic foundation should be allowed to evict a woman who wants or has an abortion?
I absolutely do not think that, because her abortion rights are set out in law. However, I also think that when that woman is going into a refuge, that refuge will make it clear that she may choose not to. It is about empowering both sides.
I am grateful for the right hon. Member’s intervention, but let us follow that argument. Let us say that somebody wants to pursue assisted death, and they want to go into a place, but they are informed that that organisation does not want to provide or has not signed up to providing an assisted death. It comes back to the issue that my hon. Friend the Member for Sunderland Central rightly raised, which is that people do not deliberately go out looking to offend people. If we were in that space—I cannot imagine being there, but I am trying to understand it—would we want to access that service, because its religious belief differs from assisted dying as a principle?
Just so I am clear, if a young woman is escaping domestic abuse and goes to a domestic violence space close to her home so that her children can carry on going to school, but finds out once she is there that she is pregnant by the abuser, does my hon. Friend think that that is acceptable?
That the domestic violence protection centre or home can refuse to let that lady stay there because she has latterly discovered that she is pregnant as a result of the abuse and wants to seek an abortion.
I am glad to hear my hon. Friend’s answer. I ask that question because I can imagine an analogous situation of a woman suffering from breast cancer who is allergic to opioids but does not know that when she enters the care home. If her cancer reaches a stage of terminality but she cannot pursue palliative options because of her allergy to opioids, assisted dying would be the only option for her to die with dignity and not in great discomfort. Under my hon. Friend’s scenario, that woman would not be able to pursue an assisted death in that care home.
To clarify, in my very clear example—it is a real-life example that reflects the experiences of someone who attended this Committee yesterday—the person has a terminal condition and enters a care home that makes her comfortable and is near her family, but discovers while the hospice or care home is trying to find methods to palliate that she is allergic to opioids and therefore her condition cannot be palliated. In the hon. Lady’s scenario, she would not be able to choose assisted death because that care home has a blanket policy against it. That would discriminate against that young woman, who has an allergy to opioids that means that she cannot be palliated.
I thank my hon. Friend for her intervention, which gives me a lot to think about. That is why I said that I genuinely do not have the answers. I want to have this discussion so that I can make the choice whether to support the amendments. I want to explore this issue further, because it is really important.
The conversation has moved on a little, but I was just going to make the point that the amendments that I tabled focus very much on the rights of the employer with respect to what they expect from their staff. I wonder whether it would be helpful to explore that a bit more.
There is much to get into, and I will try to respond a bit more when I speak again. I do not want to revisit the whole question of palliative care but, on the scenario set out by the hon. Member for Penistone and Stocksbridge, the strong advice that I have received from palliative care professionals is that it is not accurate to say that somebody’s pain cannot be palliated. It might well be that there is a difficulty with particular opioids, but there are other palliative care options available to everybody. No palliative care doctor ever says that there is nothing they can do.
Well, we have been over the whole question of palliative care and alternatives to assisted suicide; nevertheless, I wanted to challenge that scenario.
On the suggestion that there is a comparison with an abortion service no one is suggesting that a woman who goes into a refuge, discovers she is pregnant and wants to have a termination is somehow obliged to have it on the premises of the refuge, which does not believe in abortion. That is not a scenario that could happen, because that is not how abortion operates. What we are suggesting is that somebody who arrives in a care home or hospice that does not want to facilitate assisted suicide would not be able to receive such assistance there. There is no objection to their believing in or desiring an assisted suicide; the point is to protect the institution.
I recognise the difficulty with the specific case the hon. Member for Penistone and Stocksbridge raised. Nevertheless, the alternative is to have blanket permission for any resident of any care home or hospice to insist that they can receive an assisted death in that home or hospice, despite what the rest of that community and the management might want. Indeed, the patient might have signed a contract specifying that they will not seek an assisted death in that home or hospice. There is much more to discuss, but I hope that that is helpful for the hon. Lady.
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.
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.
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.
I just want to nail this point about employers and recruitment. We have said that no organisation will be obliged to provide these services, in exactly the same way as with abortion. The example I would give is this: a provider of women’s services says, “We are not providing abortion. But, in addition, we are going to ask staff members we are recruiting if they believe it is ever legal for abortion to take place.” That is exactly the same test of belief, although on a different medical procedure, that my hon. Friend is proposing in this instance.
That is not what I am saying. I am saying very clearly that when we recruit people to any job, we ask them to have the values that we have as an organisation. I appreciate my hon. Friend’s intervention, but what he says is certainly not the point I am trying to make, and I cannot imagine anybody—even for religious reasons, and even if they have changed their position—genuinely treating somebody in that way. We just do not do that.
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.
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.
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.
The hon. Lady is absolutely right to acknowledge the wonderful workforce working in end of life care, but there is a range of views within that workforce and there is the individual opt-out. No one has to be involved in this process if they do not want to be. That is clear in the Bill as it stands. I hope that, working together, we can make that even clearer if needed.
Under the Bill, doctors and health professionals already have the ability to opt out for any reason, wherever they work.
It is a good point. My understanding—the Minister might correct me—is that pharmacists currently are within the definition of health professionals, but if they are not, that is an important point, which would be covered by making the change to ensure that no one is under any duty. However, I will definitely check that.
Mr Porter also said:
“hospices evolved out of the community. They exist because communities wanted better deaths. In the end, it is the job of institutions to evolve to fit the values and laws of society as they evolve, rather than vice versa.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 202, Q264.]
The polling on assisted dying shows significant public support for a change in the law, which is one of the main reasons we are here discussing the issue today. The latest figures from the British social attitudes survey, published just this week by the National Centre for Social Research, show that support at 79%, which is unchanged or slightly up on a decade ago. Although I cannot support these amendments, this is an important debate. I think we have conducted ourselves extremely well over the past 24 hours. I think it is important that we continue the debate respectfully and sensitively.