Terminally Ill Adults (End of Life) Bill (Twelfth sitting) Debate
Full Debate: Read Full DebateDanny Kruger
Main Page: Danny Kruger (Conservative - East Wiltshire)Department Debates - View all Danny Kruger's debates with the Ministry of Justice
(1 day, 18 hours ago)
Public Bill CommitteesAmendment 281 would ensure that the patient receives advice on palliative care options from a specialist in the field. Medicine is fast-paced, with innovative and new medicines becoming available in quick succession. Although those in the profession try to keep abreast of developments, it is hard to maintain the depth of knowledge necessary in all specialties. A co-ordinating doctor may or may not have specialist knowledge in palliative medicine. Some courses may provide the opportunity to learn more, but others only touch on palliative medicine—covering it in less than a day of a five-year medical degree. Specialists who are leading in this field of medicine, innovating advances and working to palliate a patient’s symptoms at the end of life will have far greater knowledge of the specialism. Even in this wider debate, many who work in a different field of medicine or in general practice have simply got their facts wrong when speaking about palliative medicine—not through intent but because they have drawn on their own, perhaps out-of-date, experience or simply do not have the competencies to understand all that palliative care can provide.
Pain and symptom control techniques are advancing; in our debates on this Bill, people have articulated instances of poor care rather than what clinical experts are able to achieve. It is therefore essential that a patient has a consultation with an expert in the field of palliative medicine, who can alleviate a patient’s fear, support them with a plan for the end of their life, and discuss how pain and symptoms can be managed. Hearing an alternative approach to the end of life can be life-affirming, help people discuss their fears and concerns about dying, and provide a patient with what they are seeking physically, psychologically, emotionally, socially and perhaps spiritually. Specialists in palliative medicine are trained to home in on the challenges that people naturally have on receiving a diagnosis of terminal illness and are skilled at supporting a patient to explore what end of life could look like for them.
If the Committee does not pass this amendment, it would be placing itself above palliative care specialists when talking about such matters. It would undermine the need for such a specialty in medicine, like a GP who may not know the breadth of palliative medicine options for their patients. The Committee must not assume that it knows those options. Rather, it should enable those with a specialist understanding of palliative medicine to deploy their skills in this process by working through palliative care options with patients before the consideration of a path that will end with an assisted suicide.
Amendment 299 is consequential on amendment 298, which would ensure that a person has a consultation or consultations with a palliative care specialist. Amendment 298 would further embed this into the practice of managing the end-of-life process to provide the patient real choice over their options at the end of life, as what can be achieved through the practice of high-quality palliative care is often significantly different from people’s perceptions—even those of clinicians. Palliative care, like so many fields of medicine, continues to advance in its application and in the steps that can be made available to palliate a person’s pain and symptoms. When pain is difficult to control using oral or intravenous pharmacology, other interventions, such as a nerve block, can result in the absence of pain. A specialist is required to provide such a procedure, but for most people who are in receipt of palliative care, this option is rarely made available. Palliative care is about not just pain and symptom control, but the holistic journey of a patient at the end of life.
The hon. Member mentions the principle that palliative care is a holistic service. Does she agree that, given that the Bill’s advocates—including the promoter, the hon. Lady for Spen Valley—emphasise the need for a holistic range of opportunities for end-of-life care, palliative care needs to be central to that? Rather than suggesting that there is an either/or between palliative care and assisted dying, the advocates of the Bill have often stressed the importance of having both options. Does the hon. Member for Bradford West agree that it is strange that the Bill does not require palliative care consultation as part of the range of services that are offered to patients when they are having their consultation?
I completely agree, which is why the amendment tabled by my hon. Friend the Member for York Central (Rachael Maskell) is very important. I urge the Committee to accept it, as it would ensure the provision of a palliative care consultation. As my hon. Friend the Member for Spen Valley has always said, it is about having a holistic approach—we need to get back to that.
In the evidence sessions, we heard that palliative care social workers can play a pivotal role in supporting patients. Those from other professions—psychological services, chaplaincy services, physiotherapists, occupational therapists and speech therapists—along with specialist nurses and medics can all contribute to the care of a patient at the end of life. In discussions with palliative care specialists who listened to the debate on 29 November, they were perplexed by the symptoms that were graphically described in the case studies, and cited poor care as the reason for them. Many such symptoms can be controlled, and they were shocked that such examples of poor care were presented as a reason for assisted death, rather than for making good quality palliative care available to all patients.
We further heard evidence, especially from Dr Jamilla Hussain, that access to palliative care is inequitable. We know that those from minoritised communities and from low socioeconomic backgrounds have poorer access to good palliative care, and that people can have poor access depending on where they live, and on the day of the week or the hour of the day. Through this amendment, we want to ensure that everyone who is seeking an assisted death, or who has it suggested to them, as this Bill allows, is able to access a consultation or consultations with a palliative care specialist, who can dispel the myths while supporting them with their end-of-life plan.
I completely agree. It is imperative that those options—pain options and care options, including with the family—are explored in detail. The last time that I spent time in a hospice was when my brother-in-law was dying of cancer, and I remember that, as a family, we were very much involved in those conversations. Having such expertise empowers not just the patient but the family. Losing somebody who has a life-threatening condition is a difficult time for families and loved ones. When the wraparound model of palliative care, with specialist nurses and doctors, is good, it can be amazing. I have heard plenty of stories about when it is good. Last week, I mentioned a friend of mine who lost her husband last year, and she said that the palliative care nurses and doctors could not do enough. That gives the family confidence to explore the options. In that instance, that person would have benefited from this Bill—she encouraged me to support it.
As Dr Jamilla said, some people would absolutely benefit from the Bill, and they cannot be dismissed, but how do we legislate to cover people who do not have equal access to palliative care or to healthcare? There is discrimination. The covid experience that we went through recently showed the impact of inequalities. Disabled people, people with mental health conditions, elderly people, and people from black and minority ethnic communities, say that they were DNR-ed—subject to “do not resuscitate” orders. There is already a lack of trust in services, so we need to strengthen palliative care.
There is a fear among these communities that they will be pushed towards assisted dying. A consultation with participants from Pakistani, Roma, Nigerian, black Caribbean and Indian backgrounds revealed overwhelming mistrust, which is deeply rooted in the experience of discrimination and the disproportionate impact of covid-19. As one participant put it,
“They are doing this to save money…to kill us off.”
To get confidence among communities back, we need specialists people can rely on. That is what the amendment speaks to, and I hope that the Committee will support it.
I rise to briefly speak in support of amendment 281, moved by the hon. Lady and tabled by the hon. Member for York Central (Rachael Maskell).
At the moment that somebody seeks assisted death through a consultation with a doctor, they stand at a fork in the road: they can either proceed towards the assisted death about which they are inquiring, or turn towards other treatment options. On Second Reading, almost every Member on both sides of this debate stated that we need more palliative care, and everybody emphasised the value of providing good palliative care to all who need it. The amendments in this group would simply give force and power to the clear call of the House of Commons for a strong, realistic palliative care option as an alternative to assisted death, and I would be astonished if members of this Committee chose to vote them down. They give clear expression to the will of the House: that palliative care should be offered, and that it should be apparent that a patient has clearly understood their palliative care options.
I implore members of the Committee to consider what they would be communicating if they rejected the amendments. They would be saying that this is not a fork in the road, but a one-way street: there is only one way that someone is likely to go, and that is onwards to an assisted death. If that is the will of the Committee, it should vote the amendment down. If it thinks, as so many people said on Second Reading, that there should be real choice, and that palliative care should be explained and properly available, then I implore the Committee to support the amendment.
I thank my hon. Friend the Member for Bradford West and the hon. Member for East Wiltshire for their speeches. I also thank my hon. Friend the Member for York Central (Rachael Maskell), who is a fantastic campaigner for excellent palliative care, for tabling the amendment.
I cannot disagree with almost everything that has been said: people need to be given real choice, and they certainly need to be given the choice of palliative care. As the hon. Member for East Wiltshire said, people need to be offered palliative care. That is absolutely crucial to the Bill. However, the amendment would make it a requirement that a patient has met someone in palliative care. What would happen to a patient’s autonomy if they did not wish to see a palliative care doctor? Would they be excluded from the process? It is incredibly important that people have real choices with respect to palliative care in this process.
I note to the Committee the fact that clause 4(4) states:
“If a registered medical practitioner conducts…a preliminary discussion”
with a person, they have to also discuss with that person
“any available palliative, hospice or other care, including symptom management and psychological support.”
That is in the Bill. It needs to be offered.
I have had patients who have not wished to see a palliative care consultant. It is their autonomy to make that choice. I do not think that it is a wise choice—I think almost every doctor would try to push them towards palliative care—but we must not exclude those patients from accessing an assisted death if that is what they want. That does not mean that people should face a fork in the road, as the hon. Member for East Wiltshire just mentioned. This is not an either/or: sometimes people can receive excellent palliative care and still request an assisted death, as my hon. Friend the Member for Spen Valley said.
I absolutely agree with many of the things you have been saying. I totally agree that we need better palliative care—although, actually, we have pretty good palliative care. In 2017, palliative care in this country was the best in the world, and we need to rebuild back to that again. But having a requirement that someone has to have seen a palliative care consultant will weaken the Bill. I urge the Committee to reject the amendment.
I am grateful for the hon. Member’s intervention, which leads on to the point I was going to make. We are getting bogged down in nomenclature about what speciality is involved when this is actually about training. It is about whether the individual having the conversation has the requisite skills to have a meaningful conversation. Clauses 5(3)(a) and 8(6)(a) stipulate that the co-ordinating doctor or independent doctor
“has such training, qualifications and experience as the Secretary of State may specify by regulations”.
That is the key part. This is about ensuring that people having incredibly sensitive, challenging and difficult conversations with patients about choices available to them at the end of life have the requisite skills and knowledge to do so. That may not be applicable to each and every general practitioner, but those having those conversations should have that knowledge.
My hon. Friend is making a thoughtful speech, but I am concerned that he suggests that the skills required are simply the skills of conversation. The skills required are the skills to understand the patient’s condition and lay out very clearly to them their prognosis and the treatment options available to them.
With all respect to my hon. Friend’s father and other GPs, I cannot accept that every GP is fully qualified to understand the dying trajectory of the patient before them—perhaps my hon. Friend will confirm his belief that that is so. If that is true, what is the point of the palliative care profession? We have GPs already and are now introducing psychiatrists and social workers into the mix; I do not understand why on earth it should be regarded as unnecessary to include professionals in palliative care—the key skill that we all recognise as so important in this space. Why not?
I fear that my hon. Friend may be oversimplifying what I was saying. Perhaps I was not clear enough, so I will elucidate. I was certainly not suggesting that the required skills were merely those of being able to have a consultation and a conversation. I was talking about having the skills to have the information that needs to be imparted and the knowledge that underpins that and being able to articulate that within a consultation. It is a much wider picture than just having the communication skills—it is having the knowledge that underpins that. I am saying that that is not necessarily the domain only of someone who works in palliative care. There are a number of specialists who work within this field—it is a multidisciplinary field—and they all bring their expertise. The issue is about ensuring that anybody having these conversations has the knowledge base to conduct them properly.
It is a pleasure to serve under your chairship, Mr Efford. I will address the amendments in two different ways. I will start by looking at the technical issues around amendment 281, and then I will look at why I believe, as other colleagues have said, that the amendments are not necessary given what already exists both in the Bill and in terms of good practice in our health service.
First, I worry that amendment 281 will not have the effect that my hon. Friend the Member for York Central (Rachael Maskell) intends. Clause 1(2), to which the amendment relates, provides an overview of the other clauses in the Bill, and therefore cross-refers to sections 5 to 22. Clause 1(2) does not impose duties on persons in and of itself. The duties are set out in the later clauses to which it refers. Adding an additional subsection to clause 1, as proposed by the amendment, would not result in a requirement that the person must meet a palliative care specialist. That is a technical detail to reflect on.
In addition, the term “palliative care specialist” is not a defined term. Palliative medicine is a designated speciality of the General Medical Council, and a doctor can apply to be entered on to the GMC specialist register for the speciality provided that they have the specialist medical qualification, training or experience. However, the current wording of the amendment means that it is not clear whether it is seeking to require the person concerned to meet with one of those specialist doctors, or whether a meeting with another medical professional specialising in palliative care—for example, a specialist palliative care nurse—would suffice. There is no equivalent specialist register for specialist palliative care nurses. It is a technical issue, but an important one.
I also point out that my hon. Friend the Member for York Central has put an incorrect explanatory note with the amendment, which refers to terminal illness. That might just be an error, but I wanted to point that out.
Coming on to the broader grouping of the provisions: as has been said by colleagues, the amendments are tabled with really good intentions by someone who cares passionately about the palliative care sector. But they are not necessary given the process that is already set out by the Bill. Both doctors already have to discuss all treatment options, and must make a referral if they have any doubt about the diagnosis. It is very clear from clauses 4 and 9 that both the co-ordinating doctor and the independent doctor must discuss all treatment options with the patient, so they will have all the options laid out before them. That is really important because we have to think about what happens in reality. This initial discussion, in many cases, may actually take place with a palliative care doctor, and in many cases it will be highly likely, given the nature of the conditions we are talking about, that the patient may already be receiving treatment or advice from a palliative care team.
We seem to have created a narrative where this conversation is happening in isolation. Actually, as other colleagues have alluded to, we have a patient-centred approach in our healthcare. This person does not just suddenly arrive and have this one random conversation. I am sure medical colleagues will correct me if I am wrong, but if a doctor is dealing with a condition of which they have very limited knowledge, one of the first things they would do would be to refer to a specialist.
As is covered in clause 9(3)(a), if the doctor has any
“doubt as to whether the person being assessed is terminally ill,”
they must
“refer the person for assessment by a registered medical practitioner who holds qualifications in or has experience of the diagnosis and management of the illness, disease or condition in question;”
Clause 9(2)(a) also states that both doctors must assess the patient’s
“medical records and make such other enquiries as the assessing doctor considers appropriate;”
They can speak to anyone they want to, and they would in reality—of course that is what they would do. They would not sit there and think, “Oh, I don’t know enough about this condition so I will just keep going.” They would refer to specialists.
It is also really important to acknowledge what goes on at the moment. I was looking at some research last night: NHS England also has comprehensive guidance on personalised palliative and end-of-life care through a comprehensive personalised care model. None of this stops with the introduction of assisted dying as a choice for people. It would continue to happen. Patients are already getting that really good level of care.
The hon. Lady is making a very good speech about how things should work and how things do work, in many cases, when the NHS does its job brilliantly. First, I want to correct the hon. Lady: subsequent amendments do impose the duty that is consequent to these amendments to clause 1, so it would be an obligation. Surely that is the point to make: what if the doctors are not as brilliant as she suggests? What if there is not an expectation that they should definitely seek expertise that they do not have themselves? To the point made by my hon. Friend the Member for Reigate, what if this service is provided outside the NHS by an independent charity or private provider set up explicitly to facilitate people’s assisted death requests, and has no intention of referring people to palliative care if they do not ask for it themselves? Would she be content for a private provider to refer somebody for an assisted death without a palliative care referral?
I do worry about the lack of faith in our professionals. We have medical practitioners on the Committee and we have heard stories of the very good practice that happens, so it concerns me that we are so cynical about our system. Ultimately, we have to put faith in our professionals to do their job and to take that patient-centred approach, as I firmly believe they do. Dr Sarah Cox from the Association for Palliative Medicine said in her evidence to the Committee:
“In clinical practice, we make all these decisions in multi-professional teams…shared decisions are much better quality, much more robust and much safer.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q90.]
I absolutely agree with her, and that would continue to be the case.
I have a few concerns about what we have just heard in relation to the amendment. One of them is in relation to Dr Cox’s evidence. What Dr Cox actually said was:
“The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions”. ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q91.]
To pick up on that point about Dr Cox, I think it is critical that the hon. Member for Spen Valley cited Dr Cox in support of the hon. Lady’s contention that the Bill is adequate. Dr Cox, in her evidence, was saying that there is a problem with the Bill because it does not require the multidisciplinary consultation that we all think needs to happen. Dr Cox was suggesting that the Bill should be amended in order to ensure that the NHS does its job properly, and that multidisciplinary consultations are held. Her evidence was not in support of the Bill as it stands.
I point out that this is an opportunity to discuss clause stand part, not to cover the ground of amendments that have already been debated.
I will be quick, Mr Efford. I appreciate that we have been exhaustively over the detail of the amendments. I deeply regret that none of the amendments that were tabled to introduce stronger safeguards has been accepted. I want to take this opportunity to explain briefly what the Committee has done by rejecting those amendments and what we will be doing by agreeing to the clause without the amendments. I will not seek to divide the Committee on the clause, because I recognise that it enables the whole Bill to proceed, as the House wished on Second Reading, so I recognise that the principle of the Bill is represented in the clause. We wanted to tighten it, but have failed to do so.
I say gently to the hon. Member that—particularly on the previous clause—I have been very sympathetic to several of the amendments. Candidly, however, with due respect to all the hon. Members across the House who submitted this, I do not think that they have been particularly well written. I think that they leave quite a lot of ambiguity in a lot of areas. We had a discussion in the week before the recess, on a number of areas, about the word “only”. I heard it suggested earlier that the principle is about the spirit in which things are taken.
The reality is that I am very sympathetic to a lot of what is proposed, but a number of the amendments leave quite a lot of open ends. That has been a particular issue. I have been very open and have said that in principle I am supportive of assisted dying, but that I could not support it because the Bill was not strong enough in its current state. I do not think that the amendments tabled so far will strengthen the Bill; in fact, they might leave a lot of open ends, despite the very good intentions behind a lot of them.
I am grateful to the hon. Gentleman for explaining why, having opposed the Bill on Second Reading, he now seems to be supporting it. I wish I had heard, during our debates in the past two weeks, his specific objections to the amendments. If he felt, as he says, that the Bill is not strong enough, we would have welcomed his own amendments to strengthen the Bill in a form of words that he would find adequate. Perhaps that is what we will hear from him.
I did articulate a number of times where I felt that some of the amendments were not tight enough in those areas.
The hon. Gentleman has been on his feet; I appreciate that and am very grateful for his contribution to the debates that we have had.
I simply want to make the point that what the House voted for on Second Reading was the principle of assisted dying. What many members of the public who support the Bill think they are getting is a Bill that is safe—a Bill that is restricted explicitly to people at the very end of their life, who face extreme pain and suffering as they die; who are fully informed of what they are doing; who face no questions of external or indeed internal coercion; who have the absolute ability to understand what they are doing. Those are the things that people want to see in the Bill; those are the things that we have sought to effect through the amendments that we have tabled, and which the Committee has rejected.
Very explicitly, as a result of the rejection of these, I believe, very plainly written amendments, the fact is that under this Bill you can be depressed and suicidal and still regarded as having capacity to have an assisted death. You can be very marginalised—you can be a prisoner, you can be homeless—and still be regarded as eligible. You can have been influenced or encouraged by others and still be eligible. You can do it because you feel a burden. You do not need to be in any kind of pain. You do not need to be in the tiny proportion of cases that palliative care cannot help. As the hon. Member for Spen Valley accepted in the previous sitting, you can seek an assisted death for the sole reason of saving your family money, and you would be granted an assisted death on those grounds. The fact is that in rejecting these amendments, the Committee has decided and has demonstrated that the Bill is much wider than the campaigners portray.
I want to end with this point. I think there are two ways of approaching assisted dying—two essential framings of a Bill to legalise it. One is an autonomy Bill, which simply says that if people seek help to commit suicide, within certain broad parameters they should be able to do so, and there is no question of other people interfering with that choice; if they sign the requisite paperwork, they should be able to have an assisted death. The alternative is what we might call a safeguarding Bill—one where eligibility for the procedure is strictly limited and there are very strong, robust safeguards in place to protect the most vulnerable people.
The hon. Lady, and Members speaking in support of the Bill, have repeatedly emphasised that this is a safeguarding Bill. They want this Bill to be built around safeguards for the vulnerable. They respect the arguments that we make about the dangers that an open-ended assisted dying Bill would create. But the fact is that, as we have seen in the course of the debates on this clause, this is not a safeguarding Bill; it is an autonomy Bill. It is one that allows people to proceed to an assisted death because they want one, if they meet certain very loosely drawn criteria.
The reality is that this Bill is both. Of course it is about personal autonomy, choice and dignity for people who are coming towards the end of their life, but it has to be safeguarded as well. It is both. If I may say so, I think that the hon. Member makes quite an unfair characterisation of the robust, powerful debate that has taken place in Committee during the time that we have spent together. I think it has been extremely well informed. People have listened intently to other points of view and opinions, and it does the Committee a disservice to suggest otherwise.
We are all being very courteous, and it is absolutely right that we should be. I have absolute respect for the good faith of every Member here, but let us not use cotton wool in these debates. I am sorry to say that I do not accept that the Committee has listened—well, it might have listened closely, but it has not accepted a single amendment, including amendment 281, which would have put into law the principle in which the hon. Member for Bradford West believes, which is that palliative care should be an option. Why was that not accepted? The Committee has decided that it will proceed with the Bill as it is.
The fact is that the Bill will give maximum autotomy, within very broad parameters, to patients, many of whom will be very vulnerable. It is an autonomy Bill masquerading as a safeguarding Bill. When we attempt to strengthen the safeguards, they are described as bureaucratic hurdles. If the Bill becomes law, I worry about what will happen to the very limited safeguards that do exist. What we see elsewhere will happen, which is that the safeguards that do exist are treated as bureaucratic hurdles. They are in fact treated, and explicitly described, as we heard from the Australian witnesses, as barriers to a human right. What were safeguards become discrimination. I am afraid that that is the road we are going down.
The point about autonomy is often made. As I say, I think that this Bill actually has autonomy at its heart. The hon. Member for Spen Valley is right to make that point. That is really what is going on here. She wants people to be able to request help to commit suicide—to end their lives. The fact is that for the most vulnerable people, creating this option, especially when we have now switched off the obligation to seek a palliative care pathway and directed people straight down the road towards an assisted death—
I am sorry if it offends Members, but the fact is that the Bill in its present form, with the amendments rejected, will place no obligation on doctors to refer people to palliative care or to seek a palliative care consultation. Many will do so, of course—many good doctors will do exactly that—but they will not be obliged to. If we are imagining that every doctor will be as brilliant as the best doctors, I am afraid that I will have to talk about the Liverpool care pathway and the many tragic scandals that we are constantly dealing with. It is simply not the case that the option of a palliative care consultation equates to the absolute expectation that it will happen.
We have debated that issue; I apologise.
My concern is that the Bill, which is masquerading as a safeguarding Bill but is actually an autonomy Bill, will end in less autonomy for the most vulnerable patients, who will find themselves on this conveyor belt, internally pressured and encouraged to seek an assisted death when it is not in their interests. I invite the Committee to reflect on what we have done, but as I have said, I do not propose to divide the Committee on clause 1 stand part.
Under our current law, assisting someone to commit suicide is a criminal act. Clause 1 of this Bill is where we cross the Rubicon, moving away from well-established principles into a new era in which the state is empowered to help individuals to die.
This monumental decision is one for Parliament in the coming months. However, what we must do on this Committee is bolster the safeguards so that the Bill is truly as safe as it can be. Our priority must always be the vulnerable: those who could be coerced into something that is not in their best interests, and those with no one to advocate for them or protect them, who could end upbeing pushed into a process because that is the easiest and cheapest option for everyone. This law must work for everyone, not just the privileged few.
That is why I am so disappointed that at the end of nearly three days of debate, there has been not one improvement to the safeguards—not one. We asked for amendments to exclude people with impaired judgment and the depressed and suicidal; this Committee said no. We asked to protect those who are unduly influenced or encouraged by others to seek assisted dying—
I will make some brief remarks on the legal and practical effect of clause 1, as amended, to assist hon. Members in making their own assessment. Clause 1 sets out the eligibility criteria that a person must meet in order to request to be provided with lawful assistance to end their own life under the provisions of this Bill. A person must be terminally ill; this term is defined in more detail in clause 2.
Clause 1(1) sets out a further four requirements, which require that a person must also have the necessary capacity to make the decision, which is to be read in accordance with the Mental Capacity Act 2005; be aged 18 or over; be ordinarily resident in England and Wales and have been resident for at least 12 months; and be registered as a patient with a GP practice in England or Wales. This clause provides that, in particular, clauses 5 to 22 of the Bill require steps to be taken to establish that the person has a clear, settled and informed wish to end their own life and has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person in making that decision.
The clause, as amended by the insertion of new subsection (3), will ensure that the service can be accessed only by an individual ordinarily resident in England and Wales. That amendment, amendment 180, has been drafted to give effect to the policy intent of my hon. Friend the Member for Spen Valley for this legislation: that it is to apply only to those in England or Wales and is not to be accessed via medical tourism.
As I have said, the Government remain neutral on the substantive policy questions relevant to how the law in this area would be changed. The clause is a matter for the Committee and Parliament to consider, but the Government’s assessment is that the clause, as amended, is workable, effective and enforceable.
Question put and agreed to.
Clause 1, as amended, ordered to stand part of the Bill.
Clause 2
Terminal illness
I beg to move amendment 399, in clause 2, page 1, line 22, leave out “, disease or medical condition” and insert “or disease”.
This amendment ensures that a terminal illness under the Bill can only be an illness or a disease and not a medical condition.
With this it will be convenient to discuss the following:
Amendment 400, in clause 2, page 2, line 1, leave out “, disease or medical condition” and insert “or disease”.
This amendment is consequential on Amendment 399.
Amendment 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”.
This amendment is consequential on Amendment 399.
Amendment 11, in clause 2, page 2, line 7, leave out from beginning to first “of” in line 8 and insert—
“(3) A person is not to be considered to be terminally ill by reason”.
This amendment amends clause 2 to say that a person cannot be considered terminally ill by reason of having mental illness or a disability.
Amendment 181, in clause 2, page 2, line 8, leave out from “ill” to end of line 10 and insert—
“only because they are a person with a disability or mental disorder (or both).
Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if (disregarding this subsection) the person meets the conditions in paragraphs (a) and (b) of subsection (1).”
This amendment clarifies that the purpose of subsection (3) is to emphasise that only having a disability or mental order does not make a person “terminally ill” and therefore eligible for assistance.
Amendment 283, in clause 2, page 2, line 10, at end insert—
“or one or more comorbidities alongside a mental disorder within the meaning of the Mental Health Act 1983”.
This amendment would set out that a person who has a co-morbidity with one or both of a mental disorder or a disability is not considered terminally ill by virtue of those comorbidities alone.
I said in the last debate that this is either a safeguarding Bill or an autonomy Bill. [Interruption.] Or that it is both, but the claim has been that it is a safeguarding Bill and that there are very strong safeguards. If so, and if we are going to stress the safeguards, as I think we should, that means being very clear about who is eligible. It means having proper, meaningful guardrails showing who is inside and who is outside the scope of the Bill. I suggest that the Bill’s guardrails are not strong, safe or impermeable; they are broken fences. We need to mend those fences in this Committee in order to make the Bill safe.
This group of amendments includes a set in my name that would restrict eligibility to people with terminal diseases or illnesses, and another set that would build stronger safeguards explicitly for disabled people and people with mental disorders. The purpose of the two sets of amendments is the same, but they approach the challenge from opposite ends. I will speak first to the amendments in my name.
Quite simply, I want to remove the words “medical condition” from the definition of terminal illness. The reason for that is straightforward: some medical conditions are likely to also amount to a disability. As Fazilet Hadi, the head of policy at Disability Rights UK, told the Committee in evidence, there is a “huge overlap” between disability and terminal illness. The distinction between the two is notoriously blurred, and there is a reason why no disability rights organisation backs this Bill: it is here in this innocuous phrase “medical condition”. Removing that phrase will provide an additional degree of protection for some disabled people, which I think is a good enough reason to do it.
There is another group of people whom we do not hear from much in these discussions, but about whom we should perhaps be most concerned, because there are so many of them—they are almost all of us. I am talking about the frail. Frailty is an important word in this debate. I refer hon. Members to the briefing submitted in recent days by the British Geriatrics Society; it is a powerful document that highlights an essential challenge for this Bill. What is frailty? Is it a disability? Is it a terminal illness? Is it both? Is it neither? It can be noted on a death certificate as a cause of death and, even if it is not listed as a cause of death—this is a crucial point—it is the most common dying trajectory for people in the UK. More people are frail as they approach the end of life than are not.
I am interested to know where the hon. Member has got the idea that someone is going to scrap the six-month prognosis from.
Well, if the hon. Lady will say that she will never, at any stage, support a proposal to extend it beyond six months, I will be very glad to hear it. My concern is that we already have amendments tabled to do exactly that, which we will be debating shortly. I hope they will be rejected, but my confident expectation, on the basis of other countries, including the Australians who gave evidence to this Committee, is that the six-month safeguard will soon be seen as a barrier to a human right, because there is indeed no logical basis for such an arbitrary date.
The people who currently deal with the six-month prognosis, in the context of benefits and pensions, campaign that it is arbitrary and unworkable—rightly, I think—so I am afraid that I confidently expect the six-month barrier to be challenged in due course. If the hon. Lady is prepared to say that she would never do that, however, I would be very reassured.
Would the hon. Member agree that the purpose of the Committee is to look at the Bill before us? That is why we are here. I understand his concerns, his reservations and his nervousness about what might happen in future, and that is an important conversation to have, but the purpose of the Committee is to look at the Bill as it stands today; that should be the focus of our deliberations.
Yes, but I simply state on the record that I believe that this is not the end, but the beginning of a wider Bill that would follow if we passed this one. I am encouraged by what the hon. Lady says, or implies: that she does not want to go further than this Bill.
My plea to the Committee is straightforward. Let us confine eligibility to the people who the campaigners talk about: those with diseases or illnesses that are genuinely terminal. We can do more to strengthen that definition with later amendments, but, first, we have to remove the gaping hole in the fence that is this term “medical condition”. Let us remove that term.
Marie Curie’s definition of a terminal illness is
“an illness or condition which cannot be cured and is likely to lead to someone’s death”.
It is obviously one of the best-known end of life charities, so how does the hon. Member reconcile the differences he has with its professional expertise?
I am very happy to use the word “condition”—we all use it quite casually, including me—but we are concerned about legislation here. As I explained, if we include the term “medical condition”, courts could interpret that as a development—an addition—to the existing law on terminal illness, which refers only to illness and disease. The courts would be right to conclude that Parliament meant more than illness or disease, which is why it is important to be explicit about what we are talking about: illness or disease.
I think we should remove that term, but if other Members do not, I would like to understand why. The hon. Members for Harrogate and Knaresborough or for Spen Valley might have some suggestions, but I would be grateful if somebody could clarify, explicitly, what is meant by “medical condition” that is not caught by the terms “illness” or “disease”. What are the meanings of the three terms, and why do we have to have “medical condition”? It might well be that there are conditions that would not be captured by “illness” or “disease” that would be appropriate.
On that point, I will quote directly from Chris Whitty’s evidence to the Committee:
“there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting, so they are highly frail; it is therefore not the one disease that is the cause, but the constellation that is clearly leading them on a path inexorably to…death”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]
From my perspective, it is about that “constellation” where death is clearly going to happen as a result of a combination of different conditions, illnesses or diseases. That it is where that is very clear, and, because of the six-month eligibility in the Bill, we have that nailed down. That is the importance of including the term, because it is not one disease that leads to death; it is the constellation of diseases and illnesses that will inexorably lead to death.
I am grateful to the hon. Gentleman. I thought that might be the case too, and I was wondering about that, but I am very concerned about some of the evidence that Professor Whitty gave. I regret that the hon. Member for Spen Valley has removed the role of the chief medical officer from the process that she is designing by introducing the new commissioner, but I will not be sorry to see that particular chief medical officer excluded from the process. He has made significant mistakes; he had to write to the Committee to explain that he had misrepresented the Mental Capacity Act, and, on his evidence, the Committee voted to reject certain amendments.
I am concerned about what Professor Whitty said, but if the reason for including “medical condition” is to reflect the fact that there might be multiple diseases or illnesses that, together, mean that somebody is terminally ill, that is what should be stated in the Bill. It could very well include “a combination of illnesses or diseases that amount to terminal illness”. My concern is about this new concept of a medical condition, which, as I have said, implies something different from a disease or illness.
The Bill would say “the person’s death in consequence of illness or disease”—if we remove “medical condition” —so that would be the qualification or eligibility. If there is a number of illnesses or diseases that amount to a fatal prognosis, that would be captured in the clause, even once we have excluded medical condition, because the singular “illness” or “disease” would, as I understand it from our guidance on statutory interpretation, include the plural. If it is about there being a number of illnesses or diseases that add up to a fatality, the Bill as I propose to amend it would be adequate to the scenario that the hon. Member for Sunderland Central described and that Professor Whitty accounted for. The question is, what is additional illness or disease, or illnesses or diseases, that are captured by the term “medical condition”?
Let me give a quick example. Amyotrophic lateral sclerosis is described as a condition rather than a disease or an illness. ALS is not dissimilar to motor neurone disease, but nevertheless people regard themselves as having a condition rather than a disease.
Again, I am interested in that, because I would be surprised if that condition were not adequately captured by the term “illness” or “disease”. If not, we should seek further clarification, because we need to be very specific. Illness or disease has been adequate; it is adequate in the current law on terminal illness for eligibility for benefits and pensions. I await clarification on what is added by the term “medical condition”, because my concern is that it opens the door to frailty. Going back to Chris Whitty’s evidence, I am concerned at his suggestion that frailty should be an eligible condition for an assisted death.
I will wrap up shortly so that hon. Members have time to speak to other amendments, but I will quickly refer to amendment 181 tabled by the hon. Member for Spen Valley and amendment 11 tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool), which attempt to do the same thing as my amendments. They seek to protect disabled or mentally ill people, but they do so explicitly by disapplying the provisions of the Bill for those groups, or they attempt to do so. Only amendment 11 actually does, while amendment 181 fails to do so, in my view.
Let us look at subsection (3), which attempts to protect disabled people and those with mental disorders, but which, on closer inspection, is ineffective or even meaningless. In statutory interpretation, the first phrase,
“For the avoidance of doubt.”
indicates that the subsection does not add anything to the Bill except clarity. It is intended not to change the law that is being enacted by the Bill, but to clarify the meaning of the Bill. My point is that it does not add anything—in fact, it signals that the clause can be disregarded. It is like an explanatory note and not actually relevant to the Bill. Its effect therefore negates the point that it tries to make. In including it, the hon. Lady protests too much and exposes the weakness that the clause fails to overcome. It invites a court to disregard the protection it pretends to offer by stating that that protection has no force except what is elsewhere in the Bill.
I agree with the hon. Member to some degree in terms of the legal drafting. I have been advised that the expression “for the avoidance of doubt” is not generally used in a Bill if the Bill is already clear, which this is—I have been reassured by parliamentary counsel about that—but I was keen, having met disabled people and disability rights activists, to have it very clearly in the Bill that by virtue of having a disability, a mental health condition or a mental disorder, someone would not be in scope of the Bill. It was a very clear drafting decision and I stand by that decision; I think it is the right thing to do so that we are clear who is not covered by the Bill.
I am grateful to the hon. Lady; it is helpful to understand her thinking. Her amendment is an attempt to further clarify her purpose, which is to communicate that we cannot have an assisted death only because of a mental disorder or a disability. I know that other colleagues will speak to that point more explicitly.
My point is that
“For the avoidance of doubt”
is a massive signal to the courts that the subsection is meaningless. The advice was right that it is not usual to include that phrase, as it signals that nothing is being added. My concern is that it does not add anything, and the inclusion of the word “only” further demonstrates the hollowness of the protection that it purports to offer. The fact is that someone will still be able to get an assisted death because of a physical illness that derives from a mental disorder or disability. That is my concern with the later parts of the clause, but I will leave other Members to make that point.
The fact that cancer is included in the Equality Act definition does expose a concern about the Bill. It suggests that there is a real connection there, which is of concern. I think the solution is to accept the amendment 11 and ensure that disabled people and those with mental health conditions would not be eligible for assisted dying, and then to introduce a further amendment—either now, as a manuscript amendment, or later—to exclude cancer from the definition. That is a tidying-up exercise that could be done in light of the point that the hon. Member for Spen Valley made about the reference in the Equality Act. The most important thing is that we tighten the clause to protect disabled people.