Oral Answers to Questions
Naz Shah Excerpts(1 week, 2 days ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Wes Streeting
I am grateful to the hon. Member for all the work she has been doing on this issue. She is right: we need more integration of services, and we need to look at where we can share facilities to achieve better care for patients and better value for taxpayers.
Naz Shah (Bradford West) (Lab)
The former chair of my local trust, Bradford teaching hospitals NHS foundation trust, Dr Max Mclean, has today secured whistleblowing protection for himself in a landmark victory. Last week marked a year since a non-exec director at the trust was suspended, and a third non-exec director has put in an ET1 form to the employment tribunal. There appears to be a clear culture of targeting and witch-hunting whistleblowers at Bradford teaching hospitals trust. I appreciate the Secretary of State’s team supporting me, but given these recent developments, will he meet me?
Wes Streeting
I am grateful to my hon. Friend for raising these serious issues. There are issues of concern here, and she clearly describes a concerning situation for the local community. We need to look carefully at what is happening, and the Minister of State for Health, my hon. Friend the Member for Bristol South (Karin Smyth), would be delighted to meet her.
Terminally Ill Adults (End of Life) Bill (Twenty-fourth sitting)
Naz Shah ExcerptsTuesday 18th March 2025
(2 weeks, 2 days ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 18 March 2025 - (18 Mar 2025)
Naz Shah (Bradford West) (Lab)
As we heard from the hon. Member for Richmond Park, her amendment concerns the second period for reflection under the Bill as drafted. The second period of reflection would take place after the panel had approved a person’s application for assisted death. The Bill states that that period would be 14 days, unless
“the coordinating doctor reasonably believes that the person’s death is likely to occur before the end of the period of one month beginning with the day that declaration was made”;
in that case, the second period is shortened to 48 hours.
Some people who have a strong desire to hasten death might wish to avoid the second period for reflection. If they refused food, there would be a strong possibility that their physical condition would deteriorate, so that a doctor would indeed believe that they were likely to die within one month. That is not a hypothetical possibility. We know that there are people who do refuse food to the point where they become gravely ill with malnutrition.
The right hon. Member for North West Hampshire said something that I think is relevant here. He was asking questions of a witness before this Committee, Professor Nicola Ranger of the Royal College of Nursing, on 28 January. To quote Hansard, the right hon. Gentleman said:
“At the moment, within palliative care and palliative nursing generally, you are already dealing with patients who are electing to refuse treatment, food and water, or are supporting patients following an advance directive.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 59, Q70.]
On the same day, the right hon. Gentleman said something similar to another witness, Dr Sarah Cox:
“I want to pursue that point a little with you, Dr Cox. My understanding is that your profession is already taking these decisions, or supporting patients to take these decisions—for example, the withdrawal of ventilation for an MND patient towards the end, or if I decide to decline treatment or food and water to end my life as quickly as I can.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q91.]
In other words, it is not some remote possibility that patients who are already ill may decide to refuse food. That is one thing I hope that the right hon. Gentleman and I can agree on. We also know from the survey undertaken by a group of specialists in eating disorders that, in countries that have assisted dying laws, at least 60 people have qualified for assisted death because they suffered advanced malnutrition.
Some people who are seriously ill and who wish, in the words of a psychiatric witness, to “hasten death”, may see the 14-day period as intolerable. An alarming possibility is that they might stop eating in order to worsen their physical condition and qualify for the 48-hour period. Amendment 457 would remove that possibility. I strongly recommend that hon. Members support it.
People would qualify for a shortened period for reflection only if they
“have not voluntarily stopped eating and drinking”.
That word “voluntarily” is important. I understand the reason that the Bill’s drafters included a provision for a shorter, second period of reflection, but as with much of the rest of the Bill, I am sorry to say that I do not think that they have provided strong enough safeguards. This is a well drafted amendment that would tighten those safeguards. I urge Members to support it.
Danny Kruger
I recognise that, but that is not germane to the debate that we are having, which is about the actual cancellation. There is a question about why there would have been a cancellation. My right hon. Friend is right that there is no obligation to proceed once a patient passes a particular hurdle. Many will not, but when someone decides actively to renounce their decision, a big question should be asked: what is going on, and what further help is needed?
My right hon. Friend suggests that we do not step in and ensure that care is provided—that, in other circumstances, there is no additional obligation in relation to patients. I am afraid to say that he has, as ever, a coldly rationalistic vision of healthcare and of the sorts of patients we are dealing with. As I have said to him, these patients will be acting much as I imagine he would imagine—I think from a position of health and self-confidence—himself acting in that circumstance. In fact, we are dealing with people who have decided to renounce their decision to proceed, and so are by definition in some turmoil.
I crave the indulgence of the Committee, because I am talking at length about a set of amendments that I do not intend to oppose, and I recognise the value and necessity of the clause. However, I draw to the Committee’s attention that we are dealing not simply with a bit of paperwork, but with a human being who, having made one enormous decision—to die—is now making an enormous decision to live, and we are treating it as if it is only a bureaucratic question.
I finish with a question to the hon. Member for Spen Valley or to the Minister, to help me understand something that confuses me in the clause.
Naz Shah
I have not given this matter as much thought as the hon. Member has. My interest is very much in the issue of domestic violence. Does he agree that this could be somebody who has experienced domestic violence? Or children could be at risk. This person may then decide not to take the option, even though they wanted to, because of obligations elsewhere.
Danny Kruger
The hon. Lady is right, and her point goes to the question that runs through all of these clauses: why? As a Committee, we rejected the obligation on the doctors to ask, “Why are you doing this?” It was suggested by one hon. Member that it was nobody’s business why somebody was trying to take their own life and that if that person qualified, they should be able to summon the agents of the state to provide them with lethal drugs without any question about their motivation.
I agree with the hon. Lady. There is an equal expectation in my mind that doctors should ask the question, “Why are you changing your mind?” I would expect that. The clause could clarify what further referrals would need to be made, if they had not already been; as we have acknowledged, we would expect appropriate care to be provided by doctors anyway.
I conclude with a factual question. Clause 14(1) lets a patient cancel a first or second declaration, but subsection (4) says only that the duties of the doctor stop when a first declaration is cancelled. I would be grateful if the hon. Member for Spen Valley would explain what happens if the patient cancels a second declaration. It strikes me that there would be a need for urgency because if a patient decides to change their mind at that point, that is arguably a more dangerous situation. What would be the obligations on the doctor at that point? Should we read across from subsection (4) that their duties stop in the same way? Perhaps that could be clarified in later drafting, if necessary.
To conclude, my general point is that the issue of a cancelled declaration is about more than the paperwork. Although, of course, we respect the autonomy of a patient to make their own decision to cancel a declaration—obviously, I would insist that that right should be in the Bill—it nevertheless raises a question in my mind: why is that happening, and what should we expect the patient’s medical team, or others, to do in that circumstance?
Stephen Kinnock
I am acutely conscious that every word we say in this Committee is on the record. My hon. Friend makes a valid point in that context.
The purpose of amendment 253 is to clarify that a person acting as a proxy can both sign and revoke a declaration on behalf of a person seeking assistance under the Bill. This amendment would extend the provisions under clause 15 to a person who is acting as proxy to the person seeking assistance under the Bill, enabling the proxy to act on behalf of the person to cancel their first or second declaration if they are unable to sign their own name by reason of physical impairment, being unable to read or for any other reason. I note that the cancellation of a declaration is governed by clause 14, and the cancellation may be given orally, via writing, or
“in a manner of communication known to be used by the person”.
It does not require the signature of the person seeking assistance under the Bill, so a proxy may not be required for some people in relation to revoking a declaration, even if they have been required under clause 15.
Naz Shah
On the point made by the Bill’s promoter, my hon. Friend the Member for Spen Valley, should the issue of proxy end up before a court, what will be relied on—the conversation that we are having here and the intentions stated in Committee, or a future statutory instrument and what the Secretary of State puts in the guidance?
Stephen Kinnock
The regulations will have primacy, and will be shaped by a range of inputs, including the conversation we have just had in Committee. The process is that the Bill gets Royal Assent, then the regulations are drawn up based on a range of consultations and inputs—including the Hansard. The regulations then become the basis on which this proxy process is managed, enforced and executed.
Stephen Kinnock
The Bill, once it becomes an Act, places a legal duty on the Secretary of State to produce those regulations. The Secretary of State would be in breach of the law if he were not to enforce the conclusions of the Act.
Danny Kruger
Once again, we are in an extraordinary no man’s land between medical treatment and something else that we cannot find a word for. The hon. Gentleman is absolutely right. Of course, it is appropriate in medical treatment for a nurse or doctor to assist in the administration of a treatment. As he suggests, if the person found it difficult to raise a cup to their lips, the nurse would help them. Indeed, if they found it difficult to perform an injection, it would be expected that that would be done by the nurse or doctor anyway. But here we are setting up a strange new method of administering a so-called treatment in which the patient has to perform the physical act themselves.
It is apparent from the clause that it is very unclear what assistance actually looks like, so yes, I absolutely imagine that if the patient were struggling to raise the cup to their lips, a nurse or doctor who was present at the final act in an assisted suicide would help them to do so. Similarly, if the patient were finding it difficult to put their finger on the syringe, it would be appropriate—normally, one would expect—for the medical professional to lift the patient’s finger and put it in the right place. What happens next? Do they then apply a little pressure if the patient is finding it difficult to depress the plunger on the syringe? If the cup is at the lips, do they tip it up and let gravity take its course? These very complicated questions about where assistance ends and autonomy begins are, I am afraid to say, impossible to specify in the Act; therefore, it is apparent that we have a grey area.
I conclude with some evidence that we received from Iain Brassington, professor of applied and legal philosophy at Manchester University. He says:
“how are we to determine how the ‘final act’ of self-administration is to be differentiated from the penultimate act, in which the doctor may assist? How would helping a patient lift the cup to her lips be distinguished from helping her ingest its contents?”—
the hon. Member for Ashford referred to that. He goes on to say that
“the definition of the ‘final act’ is unclear, especially granted the wording of”
subsection (6)(c), and:
“The proposed law says that a doctor may not administer a substance with the intention of causing death, but also that a doctor may help a person self-administer. But how should we draw the boundary between helping a person self-administer, and playing a role in administration?”
I come to the penultimate point—not the final act—of my speech. There is some odd phrasing in subsection (7), and I wonder whether the hon. Member for Spen Valley or the Minister can help to parse the English. It says that
“the decision to self-administer the approved substance and the final act of doing so must be taken by the person”.
We understand about the decision being taken by the person, but the phrasing is that the final act “must be taken” by the person. I am not familiar with that construction. Does one take an act? Is that English? You perform an act—an act is not taken, it is done, by a person acting autonomously. The question of whether this is an active or a passive concept runs to the heart of my concern about the clause, and we need to think about redrafting, at least in deference to the English language.
Somewhere in this clause there is a magic moment when assistance gives way to autonomy, and the penultimate act by the doctor yields to the final act, which is supposed to be by the patient. We cannot tell when the responsibility for the action passes from one to the other. In proper medicine it does not matter because the medic works with the patient, but here it does matter. We are insisting that there is a difference between a doctor setting up a death, and the patient performing the action of suicide.
I will end by referencing the case of R v. Kennedy in 2007, a case on which Lord Bingham opined, about the culpability of someone who died from a heroin overdose. Was the person who gave him the drugs and tied the tourniquet around his arm responsible? Was it murder, or indeed assisted suicide? The judge decided that it was not, but made this point:
“It is possible to imagine factual scenarios in which two people could properly be regarded as acting together to administer an injection.”
Given that ruling, we are in a world of difficulty with the suggestion that it is legally possible for a doctor to assist a patient to ingest or otherwise self-administer. To assist someone to self-administer is tantamount to administering. I welcome suggestions from other Members, the Minister, or the hon. Member for Spen Valley about whether it is possible to provide guidance that gives greater clarity on what the clause means, or whether subsequent amendments will help to resolve the problems that I have, but I am afraid I do not think it will be possible to make an adequate distinction between assisted suicide on the one hand—in which full responsibility, not just for the decision but for the performance, rests with the patient—and euthanasia on the other. I do not think there is an adequate logical difference, and the practical difference we are attempting to enshrine here will be very quickly obscured.
Naz Shah
I thank the hon. Member for East Wiltshire for his amendment, and for speaking in the powerful, sensitive way that he did. I also thank my hon. Friends the Members for Spen Valley and for Banbury, who made interventions.
I did not intend to speak to this amendment, but having heard the hon. Member for East Wiltshire speak so powerfully and sensitively, it is important for me to share a few things. My hon. Friend the Member for Spen Valley has said a couple of times that the difference between people who commit suicide and those who will take this route is that the patients have been given less than six months to live, and that was not a choice. I was a Samaritan for years, because I had two failed suicide attempts in my early years, and since then I have battled with mental health demons all my life because of my experiences. To suggest that there is a difference between someone who gets a terminal illness and wants to take this act and people who want to commit suicide, and to suggest that they are doing it out of choice, is wrong. I felt really emotional when that exchange was happening. The reason why I think it is wrong is that, at the time that I wanted to commit suicide, I did not feel that I had a choice. I could not see a way out.
When I was on those Samaritans phonelines, speaking to people who rang in to unpick their feelings about what was driving them to feel suicidal in that moment, it was not because they want to die, but because they were in circumstances that drove them to feel that they had no option but to commit suicide. In some instances, it takes an amount of courage and bravery to even contemplate that option. To diminish that, which I feel is what has, intentionally or unintentionally, happened on occasion, is really wrong, because I have been there, and it was not easy and it was not because I wanted to die.
Kim Leadbeater
My hon. Friend makes a powerful point. I certainly have not heard anyone try to diminish the experience of suicidal people. We probably all have our own stories of loved ones who we have either lost to suicide—I know that I do—or who had very severe mental health issues. The point I would make is that the families I have met who have lost loved ones through assisted dying or a harrowing terminal-illness death have said that they desperately wanted to live. That is the distinction I would make, but I appreciate that my hon. Friend is absolutely right that people with suicidal tendencies and ideation also want to live—they just do not feel they have a choice. It is a very delicate debate to have, but please be assured of my sensitivities to it.
Naz Shah
I am genuinely grateful for my hon. Friend’s intervention, because I do not want the Committee—or our constituents—to feel that there is an equivalence. There is not. People who are in that space, who ring the Samaritans helpline to speak to them, all desperately want to live a brilliant life. That is what brings us here: each and every one of us wants to make this place the best it can be, so that our country is the best it can be and all our communities, people and constituents—all members of society—thrive. It is a sensitive debate, but let us be careful not to draw a parallel where there is not one. It was important for me to put that on the record.
I will support the amendment tabled by the hon. Member for East Wiltshire because we have already voted down an amendment requiring doctors to simply ask the question why. This speaks to the point that my hon. Friend the Member for Banbury raised: I know, through my experience at the Samaritans, as somebody who has attempted suicide and as somebody who has gone on to chair a charity that leads mental health interventions, how difficult it is for a patient has gone through the process of having had that conversation with their family, who might not necessarily agree, and having convinced them that they are going to take this option because they want autonomy, and fear losing it.
I cannot imagine what it must be like for those people, at that moment, saying their final goodbyes, and the level of potential pressure they face right at the last minute, having spoken to everybody and put their family members, and indeed themselves, through the process. Would they not feel internal pressure on themselves to go through with it? Would they really have the option, and not feel, in a sense, obliged to say, “Yes”? Do we really not want to ask that question?
When we debated the amendment requiring doctors to ask the question why, my hon. Friend the Member for Stroud said that doctors would ask it anyway, but that argument would not work in this instance because doctors would not do this anyway. They would not say, “I am about to give you something—have you changed your mind?”, because by that point they are in a process. The drug, in whatever form it takes, is in the process of being, or will have been, handed over to the person who wants to take that option, so it is not the same. I genuinely hope that the Committee will support the amendment, because it is our last option to make this intervention.
Terminally Ill Adults (End of Life) Bill (Twenty-fifth sitting)
Naz Shah ExcerptsTuesday 18th March 2025
(2 weeks, 2 days ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 18 March 2025 - (18 Mar 2025)
Tom Gordon
It is an honour to serve under your chairmanship, Sir Roger. I speak in support of this group of amendments, which address the issue of fairness and accessibility in the Bill. The amendments seek to ensure that those who are physically unable to self-administer the approved substance due to their condition are not excluded from the choice of an assisted death.
The principle at stake here is equity: making sure that this opportunity would be available to not only those with the physical ability to self-administer but all eligible individuals, regardless of their condition. The Motor Neurone Disease Association made it clear in its written evidence that conditions like motor neurone disease can be cruel, devastating and progressive, locking people inside their own failing bodies. More than 80% of people with MND lose the ability to speak. Many lose all limb function, leaving them unable to lift even a glass of water, let alone self-administer medication.
There is a common theme here that relates to a point I made in an earlier sitting, when we debated the period of time for eligibility. For these individuals, the Bill in its current form creates a barrier. It states that the final act of ingesting or administering an approved substance must be taken by the person themselves. For someone with advanced MND, that may simply not physically be possible. The MND Association’s evidence highlights that in other jurisdictions, such as Queensland in Australia, allowances have been made for people unable to swallow or self-administer. If we fail to include such provision here, we risk excluding some of the most vulnerable people or, even worse, creating a perverse incentive for them to seek an assisted death earlier, possibly abroad, when they may still have physical function.
These amendments are not about lowering safeguards in any way, shape or form. As we know, the Bill has robust safeguards, which these amendments would maintain. It would only be applicable in instances where doctors deem it necessary, and it would not be open to more than those with conditions restricting their ability to self-administer. If the Bill is about compassion, then we must ensure that that compassion extends to everyone; if it is about choice, then we should not deny that choice to those with severe physical limitations; and if it is about justice, then we should not allow injustice to be written into the law.
Naz Shah (Bradford West) (Lab)
I rise to oppose amendments 350 to 352, tabled by my hon. Friend the Member for Gedling (Michael Payne). They would allow the co-ordinating doctor to provide additional assistance to administer the substance in the presence of an independent witness, in some circumstances. Those circumstances would be when, as amendment 350 says, the doctor determines that the person is
“permanently and irreversibly unable to self-administer”
the lethal substance because of an inability to swallow or the loss of use of the limbs. The amendments do not spell out what the additional assistance would be, but I think it is reasonable to believe that it refers to the doctor injecting the lethal substance into a person’s circulatory system.
My hon. Friend’s amendments comes from genuine concern about the situation that some people may well find themselves in. Some people who might otherwise qualify for assisted dying under the Bill might be unable to swallow or inject the lethal drugs. We should all respect the feeling that lies behind the amendments, but we should reject them. If we pass them, we will have accepted that doctors can help people who have qualified for assisted dying to prepare to inject themselves with lethal drugs or swallow them. The Bill does not say that doctors can do that. I do not know whether the House would have voted for the Bill on Second Reading if it had, but that is beside the point—it was not part of the Bill. If we were ever to consider taking such a radical step, we should only do so after hearing as much evidence as possible on why and how this might be necessary. I urge the Committee to oppose the amendment.
Danny Kruger
It is a pleasure to follow the hon. Lady; I very much agree with her points. I also pay tribute to the hon. Member for Harrogate and Knaresborough, who spoke with his now customary intellectual clarity and moral constituency. He believes in autonomy, and he is doing what he can to resolve the essential contradiction in the Bill, which is designed to enable people to end their lives at their own discretion. He recognises that some of the safeguards in the Bill, which of course I do support, nevertheless represent barriers to what we are now suggesting is a human right, and that that human right will be restricted to a limited number of people, according to the Bill.
It is my view that the pressure, momentum or inherent direction of travel that the Bill sets us on will necessarily result in these sorts of amendments to the legislation in due course, whether in the form of subsequent amendments passed through legislation, the guidance that is issued, or indeed the practice of doctors. As I tried to explain in my comments on the previous group, my concern is that the Bill allows for quite a wide degree of discretion, naturally and necessarily enough, in the form of doctors interpreting their ability to assist in ways that respect the autonomy of patients, but are, in fact, a step beyond what the Bill—quite rightly, in my view—seeks to allow.
Naz Shah
Following the intervention of my hon. Friend the Member for Spen Valley, I have just looked at some of the evidence, and it does not cite any papers. In effect, the evidence says the effect can be seen in three documentaries. Nor does it explain why Dr Zivot’s concerns are scientifically accurate. Does the hon. Gentleman want to speak to that?
Danny Kruger
There is great anxiety about the validity of much of the evidence in this space. I have great respect for the work of Dr Zivot, because nothing else gets us close to understanding the actual effect of these drugs, once somebody has died.
Danny Kruger
My strong suspicion is that this is because the evidence is not being accurately collected or reported. With Dignitas and in all these jurisdictions, as the hon. Lady has acknowledged, there are significant failures of data and record keeping. Obviously, it is very much in Dignitas’s interest not to collect and certainly not to publicise evidence of things going wrong. However, that clearly happens in jurisdictions where data is properly collected.
Jack Abbott
Absolutely, I know. I am sure the Committee supports him as well.
I would also point the hon. Gentleman to proposed new subsection (13), which my amendment 532 would introduce, saying what “specific actions” can legally be taken, for example, if
“there is a greatly prolonged time to death”,
the person has been “rendered unconscious” or
“the person is otherwise undergoing complications.”
That quite clearly states that we expect the Secretary of State, through this amendment, to take specific co-ordination actions on that. Under proposed new subsection (12) alone, the Secretary of State would have to make provision on that, which could lead to what the hon. Gentleman is alluding to. However, what I propose in proposed new subsection is very clear: that we would expect specific actions from the Secretary of State in that area.
Naz Shah
My hon. Friend is making an important speech. He talked about percentages earlier. Is he aware of a study in the Netherlands that concluded that 21 people—18% of the cases in the study—were assisted with lethal injection? In five of those cases, that was because the person could not swallow, but in the rest, they were unable to complete.
Jack Abbott
I have used the statistic of 10%; we might find additional statistics from different jurisdictions that put that figure slightly higher or slightly lower. The point I am trying to make is that this is a relatively uncommon occurrence; none the less, this is an area of the Bill that we can make stronger with additional provisions.
I will make some progress on amendment 532. I have made the basis of my point and want to get on to amendment 533. As I have said, amendment 532 seeks to provide clarity on what doctors can do if the procedure fails or is failing by stipulating that the Secretary of State must specify in regulations what actions the co-ordinating doctor can legally take if there is a prolonged time to death; if the person has been rendered unconscious or unfit to make a second attempt at self-administration, but has not died; or if the person is undergoing complications following the initial attempt.
While there is existing GMC guidance, if no further guidance comes forward in the coming years, we risk placing some doctors in an incredibly difficult position. We always say that we should abide by good practice and the experience of many doctors, but additional cover is no bad thing. We need to say what doctors are legally permitted to do in the event of a patient undergoing severe complications. Leaving aside the doctors, that presents a risk to the patient, who may suffer needlessly and intolerably because the co-ordinating doctor does not know what they are legally allowed to do and is thus seeking to avoid legal ramifications of actions. We do not want them to take steps to respond to those complications or support the patient to die in a painful manner.
I will speak briefly to my amendment 533, which is about where assisted dying can take place. The Committee has already touched on that, and I do not want the Bill to be too prescriptive, which is why I have not stipulated exactly where the locations should be. However, this question was raised a number of times in the submitted written evidence. It is incredibly important that we address this question to ensure that assisted dying takes place at a certain location and does not have a detrimental effect on that location or community, and that the implementation of assisted dying does not exacerbate existing healthcare inequalities or deepen the mistrust of the healthcare system that exists among some ethnic minority communities in particular.
We have a duty to ensure that anyone seeking an assisted death under the Bill feels that it is safe to do so, is able to experience the positives of assisted dying and is not traumatised or retraumatised by the process. That is not possible if assisted dying takes place in settings in which people feel unsafe, which they feel unable to control or in which they have no agency. The amendment seeks to ensure that the question of where assisted dying can take place is properly addressed and that the possible impacts of assisted dying taking place at any particular location are fully considered. Only then can we address and mitigate its possible detrimental impacts.
That is a particularly important point because the criterion in the Bill that the doctor must remain with the patient until they have died realistically precludes assisted dying taking place at home, as there may be a prolonged time to death. As my hon. Friend the Member for Spen Valley said, 86% of patients in Western Australia died within the hour, but 14% took longer than that. To use another comparison, in Oregon, 87.7% of those who died via an assisted death in 2023 did so at home. If we are essentially precluding assisted dying from taking place at home because of the stipulation that a doctor has to be in attendance, we must answer the question of where it can take place.
In written evidence, Sue Ryder and the National Care Forum cited concerns about the impact on the wellbeing of staff and the other residents of hospices and accommodation-based services, should assisted dying take place within those communities. Dr Jamilla Hussain, in arguing that the question of where assisted dying could take place needed to be addressed, stated that her consultations with
“ethnic minority groups across Bradford highlighted the risk that AD could significantly deepen mistrust in healthcare services, including but not limited to palliative care.”
She argued that that needed to be considered when determining where assisted dying would take place, and because of that it would be preferable to avoid
“healthcare settings that these communities rely on, such as hospitals and hospices.”
Again, amendment 533 does not seek to specify where assisted dying should take place—I think further work is possibly needed over the coming months and years before this policy is potentially implemented—or to prohibit any particular location, I must add. The rationale behind the amendment is to ensure that through extensive consultation with relevant parties, the possible impacts of assisted dying taking place at any particular location are fully and comprehensively considered, and thereby any potential harm is addressed and mitigated against.
Jack Abbott
I appreciate that point. Throughout this process we have spoken about the absolute need to ensure that very good palliative care options are being presented to everybody along this pathway. I do not think you can separate care homes and hospices from the Bill, but I fully appreciate and sympathise with what the hon. Gentleman is saying. As I have said, there may be some hospices that are simply not appropriate for this, so although amendment 533 does not seek to put that on the face of the Bill in terms of precluding any particular areas of our healthcare system, it would require the Secretary of State, through consultation, to make sure that the legislation is used properly, and make suitable recommendations.
Naz Shah
I rise to speak to amendment 436, tabled my hon. Friend the Member for York Central. The amendment concerns what would happen after a patient has suffered complications while going through the administration of lethal drugs. Let me stress that we know that people suffer complications when they are undergoing assisted deaths. Unfortunately, one thing we do not know is how common those complications are. Another thing we lack is data that would allow researchers to investigate whether certain drugs, perhaps in combination with certain medical conditions, were more likely to cause complications.
The reason that we do not know those things is because of the many gaps in the data collected in places that have assisted dying laws. It has been mentioned before, but very much bears mentioning again, that the Australian states’ reports on assisted dying do not publish data on complications suffered by patients who self-administer drugs, and that is the overwhelming majority of assisted deaths in Australia.
Western Australia’s most recent report does tell us how frequently there were complications in the cases that involved practitioner administration of lethal drugs—4.3% of those deaths were affected. I understand that the Bill does not allow practitioner administration, but that is not the relevant point. What is relevant is that first, the Australian data shows that some people given lethal drugs suffer complications, and secondly, those complications were ones that we would not wish on someone in their last minutes or hours of life. For example, five out of 198 practitioner administration deaths involved “other complications”, which included people coughing and/or reporting a burning throat after they were helped to swallow drugs,
“hiccups with gastric reflux, involuntary muscular contractions, and delayed loss of consciousness.”
Western Australia could be much better than other states on average in avoiding complications, or it could be worse. I am afraid that we really do not have the robust data that would allow us to make those comparisons. I repeat: the Australian state does not publish data on complications affecting the majority of assisted dying cases. They do not because they cannot, since no one is mandated to stay with the patient and observe their condition. We do not know, therefore, how common those complications are.
Record-keeping in other jurisdictions is also concerning. This House’s Health and Social Care Committee examined the records kept by the state health department in Oregon while inquiring into assisted dying. They found that Oregon authorities kept very poor records into how many patients suffered complications and what those were.
Amendment 436, tabled by my hon. Friend the Member for York Central, would take a very different approach. Under this amendment, the doctor attending the person having an assisted death would have to make “a detailed record” if the person suffered complications. They would then have to declare that the person had suffered complications, on the final statement concerning that case. Finally, they would have to make a report, to both the chief medical officer for either England or Wales and the voluntary assisted dying commissioner.
Dr Opher
I am interested to hear what the Government say about the wording around that amendment and whether it is safe. I would defer to the Minister on that.
Amendment 430 from my hon. Friend the Member for Bexleyheath and Crayford, about a code of practice that must address complications and failures, is quite a strong amendment and I am willing to support it. If as doctors we have a code of practice about how we handle this type of thing, the amendment would potentially help, and perhaps answer some of the questions from my hon. Friend the Member for Banbury.
I do not believe that amendment 255 from my hon. Friend the Member for Filton and Bradley Stoke is necessary. I believe it should be dealt with under clause 21.
I believe that the very well put amendments 532 and 533 from my hon. Friend the Member for Ipswich could be covered by amendment 430.
Stephen Kinnock
Amendment 435 would require the co-ordinating doctor to escalate the care of an individual to the appropriate emergency medical services if the assisted dying procedure has failed. Requiring the co-ordinating doctor to make a referral may engage article 8 of the European convention on human rights—the right to family and private life—if the person has indicated that they do not wish to be referred to emergency services or do not wish to be resuscitated. In a situation where the procedure has failed, doctors would, as in their normal duties, support a person in line with their professional obligations and their understanding of the person’s wishes. This could include the involvement of the emergency services, but it would be unusual to specify a particular approach in legislation.
As currently drafted, clause 18(9) provides that:
“The coordinating doctor must remain with the person”
once the approved substance has been provided, until either
“the person has self-administered the approved substance and…the person has died, or…it is determined by the coordinating doctor that the procedure has failed”,
or, alternatively, until
“the person has decided not to self-administer the approved substance.”
Amendment 429 would remove the clarification currently provided for in clause 18(10) that the co-ordinating doctor does not have to be
“in the same room as the person”
once the approved substance has been provided. However, clause 18(9) requires the doctor only to
“remain with the person”.
It may still be possible that the co-ordinating doctor could remain with the person but in a different room if they decide that is more appropriate.
Amendment 436 would increase reporting obligations on the co-ordinating doctor in cases where complications have occurred. It is not clear in the amendment what would be considered a complication and therefore trigger the reporting requirement. It is also not clear what details should be set out in the person’s medical records or in the report to the chief medical officer and voluntary assisted dying commissioner.
Naz Shah
I am struggling with this. When amendments were tabled last week, there was a concise direction from the Minister that he understood the intention of the amendments. Could that approach not be applied to these amendments—that there is an understanding of the intention, and they can be tidied up in the wash-up process to make them tight? Could that not happen?
Stephen Kinnock
My job and that of my hon. and learned friend the Justice Minister is to defend the integrity and coherence of the statute. The concern that we have with the word “complication” is that it is a wide-ranging term and concept, and its inclusion could potentially undermine the integrity of the legal coherence of the Bill and how it could be interpreted in terms of its implementation. I am simply flagging the risk that if the Committee chooses to accept the amendment, there could be a muddying of the waters in terms of its meaning in law.
Stephen Kinnock
I think what I am saying is that the word “complication” contains a multitude of potential interpretations and meanings. The work that would need to be done by the Government to unpack it and understand what it means certainly could be done if the amendment passes, but the Government are saying that, as it stands, it is not clear. The drafting of the amendment is so ambiguous that it causes the Government concerns about its inclusion.
Stephen Kinnock
With all due respect, I think it is more the responsibility of those who draft and table amendments to draft and table them in a way that leaves no room or as little room as possible for ambiguity. I think my hon. Friend would be better off addressing her question about the potential complications to somebody with clinical expertise, who could list off a series of potential physical manifestations. I am not qualified to do that. I do not have a clinical background so I am not able to answer her question.
Amendment 464 would impose a duty on the co-ordinating doctor not to do anything with the intention of causing the person’s death and to seek to revive the person if it appears to them that the procedure is failing. It is unclear what “appears to be failing” would mean, and what criteria would need to be met for the co-ordinating doctor to consider the procedure to be failing. It would be unusual for primary legislation to seek to mandate a clinical course of action in the way proposed by the amendment. In addition, the amendment could potentially create conflict for the co-ordinating doctor if the person has a “do not attempt cardiopulmonary resuscitation” order or a legally effective advance decision is in place, as the doctor would have to resuscitate them even if they had stated wishes to the contrary. That could give rise to engagement of article 8 of the European convention on human rights on respect for private and family life.
Amendment 532 would introduce a new duty on the Secretary of State to make regulations setting out what the co-ordinating doctor is legally permitted to do if they determine that the procedure under clause 18(2) has failed. Under the amendment, the regulations would also include specific actions that the co-ordinating doctor can legally take if there is a greatly prolonged death; if the person is unconscious and unable to make a second attempt at self-administration; or if the person has other complications. If specific actions that the co-ordinating doctor can legally take are set out, there is a risk that, when complications arise, they would be unable to take actions that are not listed. That may lead to uncertainty and restrict what the doctor can do, using their professional judgment, to respond to particular circumstances. It is unusual to set out a particular clinical approach in primary legislation.
Amendment 533 places a duty on the Secretary of State to make regulations specifying where the provision of assistance under the Bill may take place. It sets out a requirement on the Secretary of State to
“consult such persons as the Secretary of State considers appropriate”
prior to making such regulations, including certain specified groups.
I turn to amendment 430, which would broaden the Secretary of State’s power to issue codes of practice under clause 30 of the Bill. It would explicitly enable the Secretary of State to issue a code of practice in connection with
“responding to unexpected complications that arise in relation to the administration of the approved substance under section 18, including when the procedure fails”.
Naz Shah
I respectfully point out that the Minister says that it is not for him to make interpretations and that he has not got the clinical expertise. I genuinely appreciate that, but I am also trying to understand why he accepts provisions that are not clear in the Bill. Why is he okay with those but not with the amendments?
Stephen Kinnock
My hon. Friend will have noted that a number of amendments have been drafted in collaboration with the Bill’s promoter, my hon. Friend the Member for Spen Valley. I think that demonstrates that when the Government have seen a lacuna, a lack of clarity or ambiguities in the Bill, officials, along with the Justice Minister, my hon. and learned Friend the Member for Finchley and Golders Green, and I, have worked with my hon. Friend to table amendments to tighten up the Bill. We are doing that in areas where we feel that ambiguity exists. However, when we feel that the Bill, as drafted, does not give rise to such concerns, our position on the amendments is according to our position vis-à-vis the current wording of the Bill.
Stephen Kinnock
Of course, if we can find ways to improve the Bill, we should—that is what this Bill Committee is for. But the input from my officials and parliamentary counsel legal advice have raised red flags about the amendments because of how they are drafted and the ambiguity that they give rise to. Clearly, it is up to the Committee to decide whether it wants to include the amendments or whether those issues could be looked at later—either on Report or when the Bill is going through the other place.
Naz Shah
We cannot have things both ways. I have re-read amendment 436 and I am not convinced that the issue is the drafting. It is very clear:
“If complications occur as a result of the provision of assistance the coordinating doctor must…make a detailed record of the complications…make a declaration…and…make a report”.
I am struggling to differentiate between having a conversation about it and it actually happening—it is still a complication, so why the resistance? Can the Minister agree that the Government will look at this and, perhaps in the wash-up, tidy it up—if that is the issue, and they agree in that instance?
Stephen Kinnock
Fundamentally, the role of the promoter of the Bill is to decide whether the Bill, as passed through this Committee, meets the policy intent that she wishes to achieve. Our job as Ministers is to work with her to deliver that objective. If the promoter of the Bill comes to the view that any of the amendments should be considered and added to the Bill, we will of course work with her to enable them to be delivered. My job at the moment is simply to say that there are concerns about these amendments due to the issue of ambiguity.
Naz Shah
I rise to speak to amendment 499, tabled by my hon. Friend the Member for Spen Valley. Let me outline what the amendment does and why I believe that it provides an inadequate safeguard. Under clause 19, the co-ordinating doctor may authorise another doctor to provide assistance—meaning that they will help the patient to take the lethal drugs. For clarity, I will refer throughout my speech to this other doctor who may step in to provide lethal drugs as the second doctor.
Under clause 18(4), the co-ordinating doctor must be satisfied of three conditions before they proceed to assist the person to take lethal drugs. Those three conditions are that the person has a clear, settled and informed desire to end their life, has capacity under the Mental Capacity Act 2005, and is not subject to coercion. Implicitly, the co-ordinating doctor can therefore end the procedure if they are not satisfied that those conditions apply. Under clause 19(3), the second doctor has the same duty as the co-ordinating doctor to be satisfied of those conditions before the assisted dying procedure can go ahead.
Amendment 499 would impose a new duty on the second doctor: if they suspected coercion, lack of capacity or lack of clear, settled and informed desire, they would have to inform the co-ordinating doctor. I suggest that the amendment does not take things far enough. It is a very serious matter if any doctor, be it the co-ordinating doctor or the second doctor, suspects coercion, lack of capacity or lack of desire. That means that a very serious mistake may well have been made, and that mistake could lead to someone having an assisted death who should not have qualified for it.
There should be several more safeguards in this part of the Bill. First, let us consider a situation where there was no previous suspicion that a patient had been coerced but where the doctor now suspects that they may have been. There should be a proper system of notification for such cases. It is true that doctors have a duty of care for patients, but it is also true that, given our overstressed, underfunded social care, health and policing systems, difficult cases sometimes fall through the cracks. The Bill should have a clear system for an authority to check back with the social care authorities and a person’s GP to make sure that steps are being taken to protect them from potential coercion. Secondly, the report that the second doctor makes in those circumstances should go to not only the co-ordinating doctor, but the voluntary assisted dying commissioner. Thirdly, when that happens, the commissioner should investigate the incident.
To repeat: if a doctor originally assessed a patient as qualifying for an assisted death, but a second doctor could not support that assessment, that is a serious incident that could lead to the assisted death of someone who should not have qualified for it. That does not mean that the co-ordinating doctor was necessarily at fault—not at all. The co-ordinating doctor will have been taking very difficult decisions under considerable stress. However, it does mean that the proper authorities should investigate the initial assessment, whether it was wrong and, if so, why it was wrong.
We see something similar with the Air Accidents Investigation Branch, which investigates not only accidents, but near misses that could have caused serious accidents. It does not assume fault when it investigates near misses. Often, it finds that there has been no human error. However, it has a statutory duty to investigate serious near misses. That is because the law passed by this House recognises that we need to understand why they happened in order to prevent fatal accidents from ever happening in the future.
For that reason, I do not think that my hon. Friend’s amendment is sufficient to fix the problems with this part of the Bill. I hope we can think about how better to address those problems, but I cannot support the amendment.
Rebecca Paul
I rise to speak in support of amendment 408, in the name of the hon. Member for Broxtowe. I also support amendments 499 and 210, in the name of the hon. Member for Spen Valley, and amendment 22, in the name of the hon. Member for Lowestoft (Jess Asato).
Clause 19 states that
“the coordinating doctor may authorise, in writing, a named registered medical practitioner to carry out the coordinating doctor’s functions under section 18…A registered medical practitioner may be authorised under subsection (1) only if…the person to whom the assistance is being provided has consented, in writing, to the authorisation of that practitioner”.
I support amendment 408, which adds that the person must also have been consulted.
I am sure the Committee recognises that, even where someone has basic training and the experience specified, delegating care at the end of life is something that must be done with great care, given the vulnerability of patients. If a co-ordinating doctor has guided someone through this profound and significant process, there are some intrinsic risks that come with delegating the administration of the final approved substance to someone else. I concede that there will be situations where a substitute may be required, but it will not be the doctor that the patient has trusted, confided in and relied on.
A new doctor will of course do the final checks for capacity and consent, but they do not necessarily have any specific detailed knowledge of the patient and may be unable to pick up less obvious cues that someone who knows the patient may be better able to. That gap matters, and history shows that it can lead to problems. The risks of delegation are well documented. If we take the Mid Staffordshire NHS foundation trust scandal in 2005 to 2009, detailed in the Francis report, consultants often delegated tasks to junior staff or nurses without adequate supervision, which contributed to poor care and an estimated 400 to 1,200 excess deaths. Patients suffered from neglect, untreated infections, dehydration and medication errors. That was partly because delegated staff lacked the training or authority to act decisively, and consultants failed to monitor effectively.
In surgical contexts, delegation can also falter. A 2006 Daily Mail report highlighted NHS payouts exceeding £1 million for wrong-site surgeries, where consultants delegated preparatory or operative tasks to trainees or assistants, who then misidentified sites—for example, operating on the wrong leg or tooth. Those errors often stemmed from inadequate briefing or supervision, pointing to a systemic delegation risk. We have to be really aware of this.
Those examples suggest that when consultants delegate, whether to junior doctors or other practitioners, including their peers, things can go wrong if communication breaks down, or if the replacement lacks equivalent expertise or is simply not aware of some of the detailed information. In order to manage some of the risks better, patients must be consulted about who takes over their care, and not just asked to consent after the co-ordinating doctor has decided what will happen.
Rebecca Paul
I would like to think that that would naturally happen, and we have had lots of conversations where we have said, “In reality, of course this conversation would happen.” But I always like to be belt and braces, and I would like to have these things covered in the Bill. If Committee members are confident that these things would happen anyway, I am not sure there would be any detriment to accepting this amendment.
I want to finish with a question for the Ministers. I have been worried—perhaps unnecessarily—about the lack of photographic identification in this process, and I can see a situation where allowing another doctor to provide assistance could create a risk. Although it might be less of a risk in someone’s home, because it would probably be clear who the person is, I am worried about a doctor in a hospital or clinic being substituted in at the final hour with no photographic verification of the person. At the point where they assist the patient to take the approved substance, how can the doctor be sure that it is the appropriate person if they have not had any involvement with the patient before? I accept, given some of the deep sighs I can hear, that that may be a rare occurrence, but it is worth thinking about. The simple inclusion of a photographic ID check would address some of that risk. I will not go over old ground, but I have been worrying about that.
Naz Shah
I rise to support amendment 22, in the name of my hon. Friend the Member for Lowestoft. Before I carry on, I am happy to give my hon. Friend the Member for Spen Valley the opportunity to say whether she will accept the amendment, because my hon. Friend the Member for Lowestoft has had a hat-trick of amendments being accepted around training on coercion.
Kim Leadbeater
I am very happy to accept amendment 22 from my hon. Friend the Member for Lowestoft, as it follows the theme of the previous amendments.
Naz Shah
I am grateful for my hon. Friend’s intervention, which will make my speech much shorter—I have repeated it at least three times on all the other amendments. While I welcome the amendment, I hope we can work towards something that strengthens the Bill even further.
Under the amendment, regulations would be made governing the doctors who could fill the role in the clause. Those doctors would have to undergo mandatory training in respect of domestic abuse, including coercive control and financial abuse. Giving doctors that training would not remove the danger that they will overlook evidence of abuse and coercion, but it should decrease it. The doctors we are talking about will spend less time talking to the person seeking assisted death than either the co-ordinating or the independent doctors. None the less, they will spend some time with that person, so I thank my hon. Friend the Member for Batley and Spen—sorry, Spen Valley; I keep going back to Batley and Spen, but we campaigned hard to get her elected there.
Stephen Kinnock
There are some amendments in this grouping—namely, amendments 210 and 49—that we worked on with my hon. Friend the Member for Spen Valley, and I will come to them later in my remarks.
If amendment 408 is passed, the person to whom assistance is being provided would have to be consulted before they consent in writing to another medical practitioner being authorised to carry out the co-ordinating doctor’s functions. All registered medical practitioners must uphold the standards set out in the General Medical Council’s “Good medical practice”, which requires registered medical practitioners to support patients to make informed decisions prior to consenting. Therefore, the proposed amendment may have relatively minimal impact.
Turning to amendment 210, clause 19(2)(b) sets out that a registered medical practitioner may be authorised to carry out the co-ordinating doctor’s functions only where they have
“completed such training, and gained such qualifications and experience, as the Secretary of State may specify by regulations.”
The purpose of the amendment is to provide that the required training, qualifications or experience are to be determined by a person or organisation specified in the regulations. An example of such a specified organisation might be the General Medical Council. Allowing for that to be specified in regulations rather than on the face of the Bill ensures flexibility.
Amendment 499 provides that where a registered medical practitioner who is authorised to carry out the functions of the co-ordinating doctor is not satisfied that all matters have been met, they must notify the co-ordinating doctor immediately.
If amendment 22 is made, regulations made by the Secretary of State on the necessary training, qualifications and experience of the named registered medical practitioner who is authorised by the co-ordinating doctor to carry out the co-ordinating doctor’s functions under clause 18 would need to include mandatory training relating to domestic abuse, including coercive control and financial abuse. The Committee has already made equivalent changes to requirements on training for the co-ordinating and independent doctors, so this amendment would bring the clause into line, should the co-ordinating doctor change, for the purposes of clause 18. Should this amendment be accepted, it would require setting up training mechanisms to equip registered medical practitioners with the knowledge and skills needed to identify domestic abuse, including coercive control and financial abuse.
On clause 19—sorry, I was going to refer to clause 19 stand part. That is the end of my observations.
Rebecca Paul
My hon. Friend the Member for East Wiltshire eloquently covered most of the things I would have said.
We have probably not spoken enough to date about the impact on pharmacists, but we are getting to the point in the Bill where it is really important that we take on board the written evidence and feedback that we are hearing from them. The Royal Pharmaceutical Society said:
“In dispensing a prescription, a pharmacist assumes a proportion of the responsibility for that prescription and therefore must be assured that all legal requirements are in place and that it is entirely appropriate for the patient. The link to the clinical assessment of eligibility criteria is essential and therefore the prescriber should always be one of the assessors. In addition to the usual practice of checking that the prescription fulfils the necessary legal requirement, pharmacists must have full access to the patient’s diagnosis and assisted dying care plan.”
That raises a few valid and interesting points that we need to take on board to ensure that pharmacists can do their jobs in line with the regulations and laws they are subject to, which are ultimately there to maintain patient safety.
I support amendment 466, tabled by my hon. Friend the Member for East Wiltshire, which would ensure that the Secretary of State must be of the opinion that there is scientific consensus that the drug is effective without causing pain. I am of the view that the Secretary of State is probably the right place for that responsibility to sit. One reason for that, which my hon. Friend spoke about, is that I am not sure that the MHRA is the right regulating body for that. I am no expert on this, and I am open to hearing the debate, but the MHRA’s remit covers medicines and healthcare products, so there is a question about whether legally the responsibility falls to it. If it does not, do we set up another body, or do we adjust its remit so that it is covered? I have reservations about doing anything that would merge assisted dying into normal healthcare, but I have laid that out many times over the weeks, so I will not go over that.
My understanding is that, on top of all the things my hon. Friend set out, the MHRA’s role is to give marketing authorisation for the promotion and advertising of medicine. Once that has been given, reams of regulations and compliance must be done, including in respect of the labelling of medicine. I believe it would have to be put on packaging that a medicine could be used for assisted dying. We need to get clarity on that from experts in the field, so that we fully understand it. If that is the case, how do we feel about making it clear that said medicines, potentially out in the market, could be used for assisted dying? I suggest there could be some significant downsides to such clear labelling. That is something for us all to think about. I wanted to raise those important points.
Naz Shah
I rise to speak in support of amendment 465, tabled by the hon. Member for East Wiltshire. It is a pleasure to follow the hon. Member for Reigate, who has made some powerful contributions. As we have heard, the amendment states that a drug may be approved under the Bill only if it has been approved by the Medicines and Healthcare products Regulatory Agency for that purpose.
Danny Kruger
The hon. Lady puts her finger on the tension—my hon. Friend the Member for Reigate and I expressed it as well—about whether it is appropriate to give the health regulator responsibility for regulating a product that is about not health, but death. Does the hon. Lady agree that no other agency would be appropriate, given the skills she has set out? The purpose of these lethal drugs is to kill the patient; nevertheless, it is appropriate that we consider them in terms of not only that objective but their potential side effects. The purpose is not one of healthcare, but the product is very close to a healthcare intervention. Therefore, despite all our anxieties, it feels appropriate for the healthcare regulator to oversee this.
Naz Shah
I absolutely agree and share those concerns. This is important. I appreciate that we have had this debate for many days now. Is this a healthcare intervention? Is it a treatment? What words should we apply? In this instance, when it comes to drugs, there are potential side effects. We have seen that they do not work everywhere and that they create complications. We have just debated whether a doctor should be in the room, outside the room or round the corner, as well as whether they should be visible or able to see what is going on. Ultimately, this is about the drugs. Having looked at the issue, I genuinely cannot imagine anything but the MHRA in this role. Are we really going to set up something completely new, outside our health service, that regulates drugs, their side effects and the potential implications?
Dr Opher
The matter of unlicensed drugs sounds very alarming, but we cannot regulate a drug through the MHRA if it unlicensed, and we would be looking for therapeutic effect, which would not apply in this case. More importantly, many other regulatory bodies, like the pharmacy framework and the General Pharmaceutical Council—
Naz Shah
My hon. Friend clearly speaks with expertise. There are other regulators, but the reason why I support amendment 465 is that the MHRA is an institution that we trust and that has the expertise. My understanding—my hon. Friend might be able to tell me differently—is that, of the regulators, the MHRA is the body that does the ultimate rubber-stamping and gives our country confidence in the national health service.
Danny Kruger
The hon. Lady is right that there is no other agency that is appropriate. The difficulty is that the MHRA is itself highly conflicted—we will come in due course to discuss the role of the profit motive in this mooted procedure—and the big problem is that it is overwhelmingly funded by the pharmaceutical companies. We have to ensure that there is no hint of corruption in the system, but I agree with the hon. Lady that the only way to do this is through that agency, but perhaps after reform.
Stephen Kinnock
It is a pleasure to serve under your chairship, Mr Dowd.
The Government’s assessment of amendment 465 is that it would significantly impact the legal and operational delivery of the Bill. The Government anticipate that all substances used for assisted dying will have existing licences from the Medicines and Healthcare products Regulatory Agency for other indications, but the amendment would require the approved substances to be licensed by the MHRA specifically for the purpose of assisted dying. That would require additional powers or provisions to ensure consistency with the current legal framework. The Bill does not currently provide for that, so the amendment would create significant issues for the Bill’s operability.
Amendment 466 would require there to be scientific consensus regarding the efficacy of the substances to be used in assisted dying under the Bill. The availability of scientific evidence related to the substances used for assisted dying is limited and varied across international jurisdictions. Although expert advice from clinicians and scientists will be fundamental to agreeing a list of approved substances for this purpose, in any area of medicine it would be challenging to achieve consensus on the medicines or substances to be used. The amendment may therefore open up the regulation-making process to legal challenge on the basis that there is not unanimity, and that might extend the implementation process. In addition, there may be variations in product availability and in clinical practice among countries, and that may require different substances or combinations of substances to be used.
Secondly, the amendment would narrow the scope of the duty, focusing on the drug’s efficacy in eliminating pain as a priority impact over other factors that may be considered. Our assessment is that the experience of pain is subjective. The amendment may limit the ability of a doctor to make an appropriate clinical decision on which approved substances to prescribe for their patient. The decision on an appropriate approved substance would be a clinical decision between the doctor and the person seeking assisted dying, having regard to the needs of the relevant person, including that person’s experience of pain.
Danny Kruger
I am sorry; I mis-spoke. I should have said that we have ruled out clarifying the expectations of what doctors should do in the event of an assisted death, and whether or not that is specified by the patient.
Earlier today, the Committee again ruled out specifying what the obligations on doctors are if complications arise, whatever the patient has discussed earlier. With this amendment, we now seem to be ruling out gathering any information about what happened, which is surely vital not just for safeguarding but to develop good practice in the operation of the Bill, a point that the hon. Member for Ashford made earlier. There is too much silence in the Bill, between the taking of the substance and death, on what happens if there are complications, what is permitted and, now, what is recorded. Amendment 439, in the name of the hon. Member for York Central, attempts to address that point. I hope that the Committee will accept it.
Naz Shah
I rise to speak to amendment 439, tabled by my hon. Friend the Member for York Central, which would amend clause 21 such that the relevant body would provide the chief medical officer and the commissioner with the full set of documents relating to a person who had undergone assisted dying. The relevant body would be the co-ordinating doctor if that person were a practitioner with the person’s GP practice. If the co-ordinating doctor did not meet that condition, the person’s GP practice would have the responsibility of sending those documents.
Those documents would be the person’s full medical records, court records and all documentation relating to assessments and procedures relating to the person’s assisted death. I note that “court record” refers to the Bill before we agreed to the amendments and new clauses that replace the High Court procedure with a panel system. We should be able to slightly tweak the wording to reflect that when we tidy up the Bill. That is what the amendment does. Let me say a little about why it does so and how it would make the Bill stronger.
The key aim is to ensure proper public oversight of any assisted dying scheme. The Bill creates the role of the voluntary assisted dying commissioner, who will look at and report on the workings of the system, appoint panel members and be the final court of appeal, so to speak. Those are far too many powers to give to one person, but if we are giving the commissioner a duty to report on how the system works, they should have the best possible information. It is only right that the information also be sent to the chief medical officer for England or for Wales, as appropriate; they are both very senior public officials and experienced doctors.
My hon. Friend the Member for Spen Valley has tabled amendment 382, which, to quote the explanatory statement,
“provides for monitoring, investigation and reporting functions under Clause 34 to be carried out by the Voluntary Assisted Dying Commissioner (instead of the Chief Medical Officers for England and for Wales).”
I will have more to say on that amendment when we come to it, but removing the chief medical officer from the monitoring, investigation and reporting functions is not a good idea.
What use could the commissioner and the chief medical officers make of the data provided under amendment 439? Let me give some practical examples. If there were reported instances of a person experiencing discomfort or pain as a result of taking the medication, that would be of interest to the CMO and the assisted dying commissioner. It could trigger a further exploration of the titration of medication used in the procedure. As another example, let us think about what could happen if a family raised concerns about a person receiving assisted dying despite lacking capacity or being coerced. The CMO and assisted dying commissioner could use the information provided to investigate those allegations.
The amendment will ensure that the assisted dying commissioner and the chief medical officer receive detailed qualitative as well as quantitative data on people who have received assisted deaths. It is an important step towards making sure that the assisted dying scheme receives proper, well-informed scrutiny. In turn, that scrutiny will make it less likely that the scheme will allow abuses or ignore serious problems. I urge hon. Members to support the amendment.
Rebecca Paul
I will be very brief. I rise to ask a few questions about clause 21 as a whole. Following our debates on various amendments, I am aware that family and those close to the patient could not be involved in the process, although potentially for understandable reasons. I appreciate that we are not here to deal with the whole operational piece, but we should think about it. For example, what happens with notifying next of kin after death, bearing in mind that “next of kin” has a different meaning after death? That is when we start to get into legal considerations, such as who the executor is—and this could be the first time that they are hearing about it. What would be the process for that, given that the person has potentially died on their own at home with the doctor?
What is the process for handling the next stage? Is there anything that we need to include in the Bill to make it a clearer, simpler and easier process? Who will the medical certificate of cause of death be given to for registration of the death? While all that is going on, what will happen to the body? At that point, we may not have family members to take care of that. Those are some questions arising from clause 21 that are worth reflecting on.
Terminally Ill Adults (End of Life) Bill (Twentieth sitting)
Naz Shah ExcerptsTuesday 11th March 2025
(3 weeks, 2 days ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 11 March 2025 - (11 Mar 2025)
Kim Leadbeater (Spen Valley) (Lab)
I have nothing to add on this group of amendments. I am confident that the Bill as drafted already includes significant periods of reflection. Bearing in mind that we are putting dying people through a very lengthy process already, I remain confident that the periods of reflection are adequate as set out in the Bill.
Naz Shah (Bradford West) (Lab)
I have a couple of additional comments. We talked last week about the reflection periods. I referred to the fact that when even someone buys something from a shop, they have 28 days to return it; when they are deciding on whether to have an assisted death, there is a great deal more at stake. During that debate, someone asked, “What if someone had a prognosis of just one month?”, but clause 13 has an option for a fast-track process in that situation—the person would be able to access the service in 48 hours.
I beg to differ with my hon. Friend the Member for Spen Valley, the Bill’s promoter, who said that we have enough reflection periods in the Bill. Yes, there are reflection periods, but they come after the panel’s decision. The reality is that the NHS is under so much duress, with patients waiting weeks to see their GP for anything other than urgent treatment, that getting an appointment with another GP in seven days is unlikely; it is unlikely to happen given how uncommon that is at the moment. It is right that doctors are able to triage their patients to prioritise those who require medical intervention to keep them well, to prevent hospital admission, or to stop them deteriorating or even dying.
The Government are trying to protect the NHS, and the best way of achieving that is to ensure that medical interventions are provided at the earliest opportunity before a patient deteriorates. In some cases, a medical appointment may need to take priority over an appointment for an assisted death. If someone who is dying has longer—even just a further week—in which to reflect, it removes the pressure from GPs and consultants, and enables them to prioritise properly their patients. It does not build up false expectation in patients that they have a right to a rapid consultation process. Likewise, we know that it can currently take a few weeks for patients to see another consultant, if not months or even over a year. It is therefore more helpful for the patient to have a more realistic period of reflection before moving to the next stage of their assessment.
Issues of such intensity as someone planning to take their own life should not be rushed. We know from all the work that has been undertaken on suicide that other interventions and conversations can help with reflection and reconsideration. It is important that people are given this opportunity. In their first raising the matter with a doctor, the doctor would have provided a lot of information about alternatives to the patient, such as what treatment options would be available. Perhaps they would have had a discussion with a palliative medicine consultant to review their options. There needs to be time for a patient to really reflect on all this new information. If the patient does want to explore assisted dying, there will also be all the conversations about drugs and their impact, which we will come to when we discuss later clauses.
Amendment 317 to clause 13 seeks to increase the reflection period from 14 days to 28 days. I gently suggest that we should have the reflection period before the decision, whether it be by the judge or a panel, to give people the right amount of time to consider; currently, the reflection period is afterwards. This is such a monumental decision that people should be able to contemplate all other options available. As it is, the process is rushed, and a patient could be caught up in the moment of concentrating on getting through the stages. I appreciate that others have suggested that once we have got past that stage, with the paperwork and all those things out of the way, then there is time to reflect. During the process, however, the patient has not had time to consider the options in making their decision. I am not convinced that there is enough reflection during, as opposed to after, the process.
Amendment 314 seeks to increase the reflection period from 48 hours to seven days for patients who have been given a month to live. In that case, seven days is quite adequate time to reflect on the information they have received to make informed choices. If this is about autonomy, which my hon. Friend the Member for Spen Valley has talked about many a time, it is important for people to have choices. To have that autonomy is surely to have the options in front of us and be able to consider them in detail.
In considering whether to sit on this Bill Committee, I slept on the decision. I can usually make instantaneous decisions, but knowing the amount of work, knowing that I was new to the subject, and knowing the things that I knew then—not the things that I know now—it was a big decision for me. I was even thinking about how I would manage the workload. We are talking about something that is not at all comparable. We are talking about somebody who will be taking a decision to potentially exercise the right—if the Bill becomes law—to an assisted death. That is really important for me.
I beg to ask leave to withdraw the amendment.
Amendment, by leave, withdrawn.
Amendments made: 195, in clause 8, page 4, line 40, leave out “statement” and insert “report”.
This amendment is consequential on Amendment 420.
Amendment 421, in clause 8, page 5, line 4, leave out subsection (5) and insert—
“(5) After carrying out the second assessment, the independent doctor must—
(a) make a report about the assessment (which must meet the requirements of regulations under subsection (5A)), and
(b) give a copy of the report to—
(i) the person who was assessed,
(ii) the coordinating doctor,
(iii) if neither the independent doctor nor the coordinating doctor is a practitioner with the person’s GP practice, a registered medical practitioner with that practice, and
(iv) any other person specified in regulations made by the Secretary of State.
(5A) The Secretary of State must by regulations make provision about the content and form of the report.
(5B) The regulations must provide that the report must—
(a) contain a statement indicating whether the independent doctor is satisfied as to all of the matters mentioned in subsection (2)(a) to (e);
subsection (2)(a)
(b) contain an explanation of why the independent doctor is, or (as the case may be) is not, so satisfied;
(c) contain a statement indicating whether the independent doctor is satisfied as to the following—
(i) that a record of the preliminary discussion has been included in the person’s medical records;
(ii) that the person signed the first declaration;
(iii) that the making of the first declaration has been recorded in the person’s medical records;
(iv) that the first declaration has not been cancelled;
(d) be signed and dated by the independent doctor.”—(Kim Leadbeater.)
This amendment provides that the independent doctor must make a report about the second assessment, and makes provision about the report.
Danny Kruger
I beg to move amendment 348, in clause 8, page 5, line 10, at end insert—
“(c) inform the person’s usual or treating doctor and, where relevant, the doctor who referred the person to the independent doctor, of the outcome of the assessment.”
This amendment would ensure that the independent doctor communicates the outcome of their assessment to the referring doctor as well as the usual or treating doctor.
Danny Kruger
The hon. Lady is absolutely right. We will address in later debates the point that insufficient attention will be given to the reasons why an application has been refused. If an application has been refused on the grounds of coercion, a future doctor will not necessarily know that that was the reason. As the hon. Lady says, in cases of coercive control there is a very real danger that if a person has been unduly influenced to seek an assisted death and the doctor declines their application, possibly because they detected coercive control, the patient can then be coerced, or influenced, into starting again with a new doctor. There is nothing to stop that in the Bill. We have a real problem, and I hope the Committee will consider the amendments.
Sojan Joseph (Ashford) (Lab)
I support amendments 422, 468 and 423, which I think would strengthen and safeguard the Bill. However, as someone who worked in mental health for many years, I have grave concerns about amendment 201, which would restrict access to medical records. Health professionals work in environments with great confidentiality of records; I have no concern about health professionals or doctors having access to health records. Some Committee members have talked about doctors not needing to know whether a person had tonsillitis, but most medical records or GP summaries will note whether someone has had tonsillitis, along with details about vaccinations and infections. I do not think that those records will necessarily be relevant or that a doctor would look in detail at what medication they have had in that respect.
What is relevant, however, are records for people who have a mental health disorder or are vulnerable. For example, people with serious mental illnesses such as chronic treatment-resistant schizophrenia may be on treatments such as clozapine that, if stopped, will have an impact on their mental health. The treatment that they may undergo during terminal illness may have an interaction, and medication that they have been using for many years to treat their mental health condition may have to be stopped. Doctors need to know why the person wanted to choose that route, and whether it will have an impact on their mental health.
Restricting access to important medical records by the doctor who makes the decision will have an impact on very vulnerable people. As we have discussed before, people may be homeless or may not have any family members, and it will all have an impact on why they decide to seek the assisted dying route. People may feel that they are a burden to society and the system. If there is any documentation from six months or a year ago, it will be relevant for the doctor. Removing access to medical records for doctors will have an impact on people with mental disorders, intellectual disabilities and neurodevelopmental conditions, so I oppose amendment 201, although I support the other amendments.
Naz Shah
I will try to keep my remarks brief. I first speak to amendment 468, tabled by the hon. Member for Reigate, on the asking of the question why someone wants to have an assisted death. When I originally came to this debate, Dermot, a humanist who was also my election agent—a lovely guy—came to me and said, “Now that this Bill is going through Parliament, will you support it”? I said, “Explain it to me.” He never once mentioned the word “autonomy”. If I remember correctly, what he talked about was suffering, pain and horrible deaths, which many hon. Members have referred to. We have heard lots of examples during this Bill Committee.
My hon. Friend the Member for Luton South and South Bedfordshire said that the decision was none of a doctor’s business and that the issue was about autonomy. However, if a woman was being coerced into an assisted death, the idea that it was none of the doctor’s business would not quite wash with me. We talk about autonomy, but if someone does not have autonomy in their lives—if they are in an abusive relationship, are a victim of coercion or have a vulnerability—they might not have the choice.
When we ask a question, it is often about something else. I have experienced this myself. I am very passionate; when I am talking about things, somebody might just stop me and say, “Naz—what’s this actually about?” That is all it takes to make me stop, take a step back and a breather, and think for a deeper minute about whether the issue could actually be about something else. We do not always stop to think.
Dr Opher
The amendment is good practice; I do not in any way deny that. The hon. Member for Reigate is obviously coming from a really good place. However, the amendment is almost like specifying that when someone goes to see a doctor, the doctor has to say, “How can I help? What is wrong?” It is just unnecessary; that is my only feeling about it. If someone came in and said, “I would like to request an assisted death”, the doctor would not just say, “Okay”—they would ask how the patient was feeling. It is normal medical practice to ask what is going on in someone’s mind, so that does not need to be specified in the Bill.
Naz Shah
I thank my hon. Friend for his intervention. There is a medical model and a social model of intervention. If I walk into a GP surgery with a really bad headache, I am prescribed paracetamol. If the headache gets worse, I am prescribed something stronger—maybe co-codamol or codeine. Doctors are really busy. We have had to add another 40,000 appointments just for people to get through systems, so we know how hard it is to get a GP appointment.
If the person who turns up at the GP’s with a headache is usually quite healthy, the doctor might not take a minute to ask about what has actually happened. If I say, “I have a headache because I am banging my head against the wall—I have that much stress”, that is a whole different conversation. Having that conversation with the patient—probing a little more—is, for me, very important from a holistic point of view.
Rachel Hopkins
I want to check that my hon. Friend was not implying that I had not thought deeply—for more than a minute–in the course of making my comments earlier.
Rachel Hopkins
I am grateful to my hon. Friend for reiterating those points. Does she accept that it is a patient’s right to say, “It’s none of your business” in the course of the conversation?
Naz Shah
I absolutely accept that it is the patient’s right to say, “It’s none of your business”, with the really clear caveat that they could well be a vulnerable patient. They might say that it was none of the doctor’s business, and that doctor might then not be able to explore the other things going on with that patient. That is why, for me, this does not wash.
The point that I am trying to make is that, in the course of a normal consultation, it is presumed that every doctor will know their patient and be able to have these conversations. In most cases, they probably will because we have amazing doctors; I have amazing relationships with my doctors. But does that mean that the doctors will ask that one question: “Why?” That is the crux of the whole Bill.
Rebecca Paul
The right to say, “It’s none of your business” might be fine when no one else is involved, but if someone seeks an assisted death, that involves multiple members of NHS staff. There is an impact on all those people, who need to be comfortable with what they are doing. Maybe the person needs to accept that they do need to provide some information so that the medical staff feel comfortable about the question of eligibility.
Naz Shah
That opens up a whole different debate for me. Some clinicians will not sign up to this process and some will. That is a whole different debate, but I take the point that there has to be a reason.
We talk about the option for referral to palliative care. I have previously moved amendments that would have meant a referral, without the option; however, when considering that option, a doctor needs to understand that if a patient says, “I do not have to explain myself—full stop”, or, “I do not want to talk about palliative care”, that should raise alarm bells. If a doctor says, “You’ve got this terminal illness. These are the options—let me spell them out for you. You have the option of referral to palliative care and the option of these drugs, so why do you want to kill yourself?”, and the patient turns around and says, “It’s none of your business”—
Rachel Hopkins
The Bill already sets out a number of things that a doctor has to assure themselves of, with regard to coercion and capacity. They would do that having had a significant amount of training to establish, in the round, after consulting others, that one way or another the legal requirements have been met. The “Why?” question appears to me to bring in a judgmental element—
Rachel Hopkins
Indeed: subjective, as the right hon. Gentleman said. That is the point that I am trying to get at. There is an objective assessment, which is wholly appropriate, but a subjective assessment would lead down a different route and muddy the objective assessment.
Naz Shah
I absolutely see where my hon. Friend is coming from and appreciate her concern, but we will have to agree to disagree as we have a difference of opinion. A subjective assessment might reveal that something else is going on for that patient.
I hate to put myself in this position, but imagine I have just received a diagnosis and I am going to die within six months. I could have a whole load of anger about that happening to me and I could say, “I don’t want this. I don’t want to talk about it. It’s none of your business. I’m angry—this is what I want.” At that point, does the doctor stop? In most cases, my hon. Friend the Member for Luton South and South Bedfordshire is absolutely right, but in some cases she might not be. I might want to shut the conversation down because I am angry or because other things are going on in my head and I do not want to explain. Amendment 468 would allow the doctor, from a compassionate point of view, to have another conversation with the patient.
Jake Richards
Does my hon. Friend agree that she is making a powerful case against amendment 468? A multitude of conversations and different circumstances will need to be taken into account; it is wholly inappropriate to have a mandated question in primary legislation. We should go back to clause 1, which I think the Bill is actually about. It states that the person must have
“a clear, settled and informed wish to end their own life”.
Does my hon. Friend agree that that is what is at the heart of the Bill, rather than decisions about what is in the person’s best interests?
Naz Shah
I respectfully disagree. I am making the case that there is a conversation to be had. Yes, there is informed choice but is my hon. Friend suggesting that the question should not be asked at all? I take the point that with an informed choice there would have been an exploratory conversation, but sometimes just calling something out, or stating the obvious, makes a huge difference.
Rebecca Paul
I wish to clarify that the amendment is about not an additional assessment but merely a simple question. Like many who have spoken, I hope that most good doctors would ask the question anyway and take the answer. It may inform them or it may not but sometimes, as the hon. Member for Bradford West has just discussed so powerfully, it is helpful to remind medical staff, who are under lots of time pressure, that sometimes it is worth stepping back and asking why.
Jack Abbott
I appreciate that my hon. Friend has given way a number of times, but I gently suggest that we already know the crux of the Bill and what we are debating. The “why” is that people with a terminal diagnosis, with six months to live, would like a course of action to end their lives in a pain-free way and to have the autonomy to do so.
We are in danger of over-legislating for a range of different permutations that could potentially happen in conversations. I agree that these kinds of questions are absolutely crucial, but it may satisfy my hon. Friend that amendment 21, to which we agreed a few moments ago, requires medical practitioners to take training on
“domestic abuse, including coercive control and financial abuse”.
That sort of protection and safeguard has already been agreed to.
We will rely on highly specialised individuals to pick up on these issues. They may want to explore, through further questioning, why people are making these decisions but we cannot legislate for all the different sorts of conversations, and all the emotions that may be going through people’s minds. If someone comes back and says, as my hon. Friend put it, “Well, it’s none of your business,” or whatever the answer may be, we will rely on the specialised professionals to pick up on danger signs. However, that would not necessarily lead them in every single conversation to have a suspicion of the patient’s motives. Life and conversation do not work like that and we cannot legislate in that way.
Naz Shah
I absolutely agree that life does not work like that. Life is very complicated and that is why I want the conversation to happen. My hon. Friend referred to amendment 21, which we have just agreed to. I spoke extensively about why that is a brilliant amendment that moves us towards much more safeguarding, but I also think that it does not go far enough for women, marginalised communities and people from ethnic minority backgrounds. I genuinely do not feel that amendment 468 is about over-legislating. It is just stating an obvious fact: sometimes, even in normal life, we go around the houses to get to a conversation and get to the right point. That is what I want to get to.
Jack Abbott
To follow up on the example my hon. Friend gave earlier, if—to be glib—someone said, “None of your business”, she would want the doctor to keep probing. At what point does that end? If someone genuinely does not want to have that conversation and says, “I want to end my life because I have a terminal diagnosis. I live in fear of the pain that could await me and I don’t really want to go into much detail,” where does that end? Where does that conversation continue to?
Danny Kruger
I completely agree with the hon. Lady’s point. The conversation goes on in the way the doctor would want it to, but they have at least asked the question. Is it not very simple? The Bill already requires doctors to look for signs of external coercion. As we have acknowledged, there is no way to determine internal coercion—the influence people have on themselves. There is no way in the Bill at the moment to identify whether somebody feels that they want an assisted death because they fear that they are a burden to others. This question is the only opportunity we have to tease out that answer: does she agree?
Naz Shah
The hon. Member for East Wiltshire makes an important point. Where are the opportunities? When doctors are doing the assessment.
The other issue that speaks to me is the question of internalised bias. We will have professionals with subconscious bias or affirmed bias. They will be clinicians who have chosen or agreed to take part in the process; fundamentally, the majority of clinicians will not take part in this process because of their beliefs. It changes the relationship between doctor and patient from a societal perspective.
I know that a number of times I have been stopped during a process and asked a different question, and at times that opportunity for reflection—even without the pressure of knowing I have only six months to live—is of benefit to me. I am sure that others would benefit from it, too, particularly because the decision is so momentous. For that reason, I will certainly support amendment 468.
I thank my hon. Friend the Member for Spen Valley for tabling amendment 201. I have mixed views on it. I appreciate what my hon. Friend the Member for Luton South and South Bedfordshire said about medical records, especially when it comes to women and their past, but I also appreciated what my hon. Friend the Member for Ashford said about his experience from a mental health perspective.
I am still thinking about the amendment and I am not sure whether I will support it or not, but further thought needs to be given to the subject. There are the issues of mental health and women’s rights, but another issue applies, too. If someone has experienced trauma in childhood but that trauma has come out much more recently, even though it does not necessarily affect the decision at hand—whether to choose an assisted death—is there some kind of historical post-traumatic stress disorder that would then need to be explored? I do not have the answer, but I look forward to hearing the comments of my hon. Friend the Member for Spen Valley on that point. I would value hearing whether she has thought about that and what her understanding of it is.
Stephen Kinnock
As I have mentioned before, the Government have worked closely with my hon. Friend the Member for Spen Valley on some mutually agreed amendments, including amendments 201, 422 and 433. The amendments that the Government support aim to ensure the legal robustness and operability of the legislation, should it pass, and I will offer a technical explanation for them.
Amendment 201 will clarify the wording in clause 9 on the doctor’s assessment. It provides that the duty on an assessing doctor to examine a person’s medical records applies only to records that appear relevant to the doctor. The effect of the amendment is to make clear as part of the assessment process that the assessing doctor is required only to review medical records that are considered by the doctor to be relevant to the person’s request to seek an assisted death.
Amendment 422 would add an additional requirement on an assessing doctor to make inquiries of professionals who are providing or who have recently provided health or social care to the person and make such other inquiries as the assessing doctor considers appropriate. This applies to—
Terminally Ill Adults (End of Life) Bill (Eighteenth sitting)
Naz Shah ExcerptsWednesday 5th March 2025
(4 weeks, 1 day ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 5 March 2025 - (5 Mar 2025)
The Chair
Will hon. Members please ensure that all electronic devices are turned off or switched to silent mode? Tea and coffee are not allowed in the Committee Room. We are continuing line-by-line consideration of the Terminally Ill Adults (End of Life) Bill. I remind Members that the most valuable of all talents is never using two words when one will do. I take that from Thomas Jefferson.
Clause 5
Initial request for assistance: first declaration
Naz Shah (Bradford West) (Lab)
I beg to move amendment 290, in clause 5, page 3, line 13, at end insert
“who is not a physician associate or doctor in any training grade or in postgraduate training or a locum tenens post and—”.
This amendment would exclude physician associates and doctors in training from acting as a coordinating doctor.
The Chair
With this it will be convenient to discuss the following:
Amendment 185, in clause 5, page 3, line 14, leave out from “who” to end of line 15 and insert
“meets the requirements specified in regulations under subsection (3A)”.
This amendment and Amendment 186 impose a duty on the Secretary of State to make regulations about the training, qualifications and experience required in order to act as the coordinating doctor.
Amendment 335, in clause 5, page 3, line 14, after “such” insert “specialised”.
This amendment is linked with NC12.
Amendment 52, in clause 5, page 3, line 15, leave out from “State” to end and insert
“must specify by regulations, including experience of managing terminal illnesses,”.
This amendment would require the coordinating doctor to have experience of managing terminal illness.
Amendment 359, in clause 5, page 3, line 18, at end insert—
“(ba) who has conducted the preliminary discussion in accordance with section 4,”.
This amendment requires that the coordinating doctor has conducted a preliminary discussion prior to witnessing the signing of the first declaration.
Amendment 186, in clause 5, page 3, line 23, at end insert—
“(3A) The Secretary of State must by regulations make provision about the training, qualifications and experience that a registered medical practitioner must have in order to act as the coordinating doctor.
(3B) The regulations must include training about—
(a) assessing capacity;
(b) assessing whether a person has been coerced or pressured by any other person.
(3C) Subject to that, the regulations may in particular provide that the required training, qualifications or experience is to be determined by a person specified in the regulations.”
See the statement for Amendment 185.
Amendment (a) to amendment 186, after
“(b) assessing whether a person has been coerced or pressured by any other person.”
insert
“(c) specific and up-to-date training on reasonable adjustments and safeguards for autistic people and people with a learning disability.”
Amendment 340, in clause 5, page 3, line 23, at end insert—
“(3A) The Secretary of State must make regulations under subsection 3(a) specifying specific and up to date training on reasonable adjustments and safeguards for autistic people and people with a learning disability.”
Amendment 427, in clause 5, page 3, line 23, at end insert—
“(3A) In Wales, all reasonable steps must be taken to ensure the practitioner under subsection (3) has fluent proficiency in the Welsh language if services or functions in the Act are to be provided to an individual in Welsh.”
Amendment 20, in clause 5, page 3, line 25, at end insert—
“(4A) Regulations under subsection (3)(a) must specify that training in respect of domestic abuse, including coercive control and financial abuse is mandatory.”
This amendment would require the registered medical practitioner acting as the coordinating doctor to have undertaken training on domestic abuse, including coercive control and financial abuse.
Amendment 336, in clause 8, page 5, line 13, after “such” insert “specialised”.
This amendment is linked with NC12.
Amendment 337, in clause 19, page 13, line 20, after “such” insert “specialised”.
This amendment is linked with NC12.
New clause 12—Obligations related to training—
“(1) No registered medical practitioner or other health professional is under any duty to opt in to undertake specialised training wholly or largely relating to the provision of assisted dying in accordance with this Act.
(2) No medical practitioner or other health professional who has carried out training as may be specified by the Secretary of State under—
(a) section 5(3)(a),
(b) section 8(6)(a), or
(c) section 19(2)(b),
is under any duty to participate in the provision of assisted dying under the terms of this Act.”
This new clause would set out that a registered medical practitioner or other health professional is not under any duty to undertake training in relation to the provision of assisted dying. And anyone who undertakes such training is not under a duty to provide assisted dying under the Act.
Naz Shah
Amendment 290 was tabled by my hon. Friend the Member for York Central (Rachael Maskell). Clarity is needed on who a medical practitioner is. With the regulation of physician associates, there was much unease from the British Medical Association and others on the role and function of the new profession. Although I do not want to debate the merit of this today, it is clear that involvement in the assisted dying process requires someone of significant experience to support a patient while undertaking complex assessments and co-ordinating their care between specialists and others.
In some jurisdictions, we have heard that clinicians have extensive clinical experience, whereas they do not in others. Therefore, being able to determine the level of experience and competencies of the medical practitioner is important to ensure that the patient is receiving care from someone who has significant practice expertise. A doctor in training, whether as a specialist or general practitioner, although making very specific clinical decisions, should not be deemed as having the experience, competencies or breath of experience for the purposes of this process. An associate practitioner should also not be deemed to reach these thresholds. Amendment 290 would therefore show the public that the person who would act as the co-ordinating doctor held such experience, and that there was no doubt in their standing to register for such a role. The public can already be confused on the exact status of the clinician they are under or indeed the profession itself. Including this safeguard would ensure that the patient’s interests are upheld.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
It is a pleasure to serve under your chairship, Mr Dowd.
I rise to speak in support of amendment 185, in the name of the hon. Member for Spen Valley, the Bill’s promoter, regarding training requirements that need to be made by regulation. It would place a duty on the Secretary of State to make regulations about training qualifications and experience required in order to act as a co-ordinating doctor. Similarly, amendment 186 says that the regulations should specifically include training relating to the assessment of capacity and assessing whether a person is being coerced or pressured by any other person. Proposed new subsection (3C), introduced by amendment 186, would make provision that
“the required training, qualifications or experience is to be determined by a person specified in the regulations.”
In making those regulations, reflection of expertise is vital. We heard from many experts who gave us evidence about the importance of training, development and mentorship, which we would expect to see covered in the regulations. Placing those requirements in regulations would mean that they could be developed through consultation with experts and stakeholders, after gaining a wide range of feedback. It would also future-proof the requirement of any training to be developed and strengthened through future experience.
As part of the safeguards in the Bill, the key principles around assessing capacity and potential coercion are really important. I am therefore minded to press the hon. Member for Spen Valley also to support amendment 20, in the name of my hon. Friend the Member for Lowestoft (Jess Asato), which states:
“Regulations under subsection (3)(a) must specify that training in respect of domestic abuse, including coercive control and financial abuse is mandatory.”
That would provide further clarity, and would further strengthen training on assessing coercion in all senses of the word as part of the safeguards, which many Members, even in the earlier debates, have said that it is so important that they see. I agree, and I hope that the promoter of the Bill will support amendment 20.
Naz Shah
I rise to speak to amendment 20, which was tabled by my hon. Friend the Member for Lowestoft (Jess Asato).
The key point for me is that doctors are not specialists in coercive control, but this amendment would give them training to spot abusive and coercive relationships, which are difficult to detect. Domestic abuse and coercive control have a disproportionate effect on women and disabled people, and if doctors just rely on their experience to detect coercive control and abuse, they are more likely to miss cases. Some doctors will be more experienced or more perceptive than others. This amendment is not a perfect safeguard, but it will improve the chances of doctors stopping people being coerced.
The amendment would ensure that co-ordinating doctors must have undertaken training on domestic abuse, including coercive control and financial abuse. It is a significant and distinct amendment. In particular, it addresses the issue of repeated coercive control, which so far has been overlooked in the Bill. I believe that amendments seeking to improve safeguards against coercion that do not address the issue of repeated coercive behaviour are inadequate in protecting vulnerable people, particularly women.
It is regrettable that in our witness sessions we did not hear from any experts on repeat coercive control. Such testimony would have been valuable, helping the Committee to understand why this specific environment puts people at risk with regard to the Bill.
We have already spoken a great deal about coercion in this Committee and other Members have referred to that. We have raised concerns about someone coercing another person into the process of assisted dying in a one-off incident. However, we have not yet discussed the very real issue of repeated coercive control and what it means to live in that environment, nor the implications that the Bill may have for people in those situations.
Dr Hannah Denno submitted written evidence to this Committee. She wrote:
“As a doctor I am not trained to detect coercion, and I do not believe that the Bill pays sufficient attention to the detection of those who are under pressure from themselves or others to end their lives. The Bill describes two independent medical assessments, both can be carried out by doctors who have never previously met or cared for the patient.”
Kim Leadbeater (Spen Valley) (Lab)
I just want to provide some reassurance to my hon. Friend the Member for Bradford West. I have met my hon. Friend the Member for Lowestoft and today I will support amendment 20, which she has tabled. I hope that provides some reassurance to my hon. Friend the Member for Bradford West.
Naz Shah
I am grateful to my hon. Friend for that intervention and I am really grateful that she is supporting the amendment. However, the reason I am making this speech is that I do not think the amendment goes far enough in terms of providing safeguards within the Bill. So, I will make some progress with my speech and then I will address some of the issues that are not addressed in this particular amendment, and set out how we can go further, as well as highlighting some of my concerns.
I return to what Dr Denno wrote in the evidence that she submitted. She wrote that she was:
“not trained to detect coercion”.
And she also wrote that
“Social workers are better placed to screen for coercion but are not mentioned in the Bill.”
Since that submission, my hon. Friend the Member for Spen Valley has tabled an amendment that would mandate a social worker to sit on a panel to consider each application for assisted death. However, I am afraid that I must repeat several points about these panels, points that have already been made frequently. These panels are under no obligation to interview the applicant for assisted death in person. Panel members may do so if they have any concerns, but they may not. That makes it harder for panel members to detect possible coercion.
There is also an absence of any mechanism for people who know assisted dying applicants to report any concerns they have that that person is being coerced into this form of action. The panels are not used in that way, which is the way that multidisciplinary panels are used in the NHS to decide on the pathway for a patient. Instead, the panels introduced by my hon. Friend’s amendment would wait until the two doctors have submitted their statements on the applicant and then the panel members would scrutinise those statements. If they spot problems with the way that the doctors have determined that the patient is not being coerced, then, yes, they would call the patient in for more scrutiny. However, they will first have to come to that conclusion without seeing the patient. That is not a very robust safeguard.
Kim Leadbeater
I am in the process of tabling an amendment that would change the panel to that effect, so that it would speak to the patient. Hopefully, that provides some more reassurance for my hon. Friend. I am sure that we are working very effectively through the Committee process to achieve what we all want to see.
Naz Shah
I am pleased to hear that my hon. Friend will table further amendments, but I have not seen that amendment, so I cannot speak to it.
I would slightly beg to differ with my hon. Friend in terms of making progress in the way that I would like to have seen. I would just gently remind her that I am not convinced that we are. I think we are making good progress, but I also voted against one clause stand part and had lots of concerns about another one, so we will agree to disagree on that one.
The non-governmental organisation The Other Half observes in its written evidence to this Committee—TIAB 104—that the Bill makes no provision to identify family members who may benefit financially from the death of a patient, and, therefore, the Bill is unable to protect the vulnerable. That is something that I have said before in this Committee.
This amendment makes training in respect of financial abuse mandatory. It is vital that a medical practitioner is trained on how to identify coercion—we can all agree on that—but coercion is different from domestic abuse. Coercion may be relatively obvious to spot, but, in contrast, coercive and controlling behaviour is much less obvious. It can be subtle. It can be hidden, and unexpected to an outsider. It requires much more sensitive questioning and a degree of a doctor-patient relationship to identify. Multiple people have raised that a patient-doctor relationship is important for spotting that, and, currently, there is nothing in the Bill to say that the two independent doctors have to have met the patient before.
That subtle coercion could have happened over years. We have repeatedly heard from people giving evidence that it is really hard to spot, and the reason it is hard to spot is because it is a matter of trust for a patient to be able to tell somebody—for a victim of coercive control to be able to express that. Even recognising that there is subtle coercion going on is hard for victims of that coercion to understand.
If there is domestic violence—again, I say in this Committee that I first campaigned on domestic abuse in the mid-1990s, and I am not convinced that the stats have changed much. I will refer to some more later on, as I make progress, but it takes women, on average, 40 times to leave an abusive partner—40 times—and it took me a long time to leave my abusive forced marriage when I was very young. The coercion that happens is so subtle and, again, when it is repeated coercion, it is hard to even recognise it as a victim, let alone for a professional to be able to see it. Even when a professional may pick up on it, it is acknowledgment from the victim—that they recognise what is happening—that is important, and that often is not the case.
Again, multiple people have raised that the doctor-patient relationship is important, and there is nothing currently in the Bill to ensure that there is a long-standing relationship between the doctor and the patient. Therefore, it is unreasonable to assume that someone in an abusive relationship, or who experiences coercive and controlling behaviour on top of their terminal illness, would be willing and able to disclose that to a stranger, even if that stranger is a doctor.
On top of that, research suggests that a significant proportion of medical staff in the UK do not feel that they have had adequate training to spot domestic abuse. Research by YouGov and the charity SafeLives in 2018-19 found that half of UK healthcare professionals are untrained to spot domestic abuse.
I understand the current difficulty in ensuring that doctors have a prior relationship with patients; it may not be practically possible. In many cases, where patients will know their doctors, or even know them well, it is even more vital that both doctors have been thoroughly trained in spotting coercive-control behaviour.
Like the other Labour MPs on the Committee, I was elected on a manifesto pledge to halve violence against women and girls within the next 10 years. We must not forget that as we scrutinise this legislation; I want my colleagues and I to remain committed to that in this Bill.
This Bill will have particularly grave consequences for women, since we know that domestic abuse disproportionately affects them. The crime survey for England and Wales estimated that 2.3 million people aged 16 years and over experienced domestic abuse in the year ending March 2024. Of those, 1.6 million were women and 712,000 were men. In the same year, there were only 51,183 domestic abuse-related prosecutions—a very small number compared with the number of people who experienced domestic abuse. That is in addition to the abuse of our elderly, on which Age Concern submitted evidence. Those figures demonstrate that we already frequently struggle with bringing domestic abuse cases to prosecution stage. They show that even the dedicated members of our caring professions have trouble detecting domestic abuse. If something is hard, we need to train our doctors to do it.
Our society already diminishes the status of elderly, infirm women and I have concerns that the Bill will further entrench that. We need to be aware of and ensure that we address the problem of mercy killings in the Bill. That issue is distinctly gendered and the Bill as currently worded will have a distinctly gendered impact if we do not address it. In 2024, The Other Half carried out a review of more than 100 UK cases of so-called mercy killings. It found that
“‘mercy killings’ are not the wanted, ‘hastened’ deaths that need assisted dying.”
Instead, the review found that:
“They are overwhelmingly violent domestic homicides of women, by men: and show that our society is still poor at detecting and responding to domestic abuse.”
Some groups are more vulnerable to domestic abuse than others. A higher proportion of people aged 16 and over with a disability—a group that we know is vulnerable in relation to the Bill—experienced domestic abuse in the last year than those without a disability.
The law and Parliament have, unfortunately, taken a very long time to even start adequately responding to these problems. Coercive control was first recognised as a distinct offence in English law only in the Serious Crime Act 2015. As written, the Bill would not mandate training to the doctors whose role it would be to consider assisted dying cases. Of course, no training can be perfect, but to allow the Bill to go forward without ensuring that doctors have training in this complex matter would be negligent. It would mean that we were failing to even try to carry out our responsibilities to protect people, especially women, in abusive and coercive relationships.
I appreciate that my hon. Friend the Member for Spen Valley has said that she will accept the amendment, but it does not go far enough. The question is: how do we prevent abusers making use of the Bill if it becomes law? The amendment gives us one way of mitigating that risk to a degree. We already have issues recognising domestic abuse. The amendment cannot perfectly solve that problem, but it would take steps to do so.
We must safeguard vulnerable people who live subject to coercive and controlling behaviour on a daily basis from opting for assisted dying as a result of that environment. Thorough and specific training on spotting that is vital for doctors. I am grateful that my hon. Friend, in accepting the amendment, will ensure that some of that training will be forthcoming. Even one abused person being driven by their abuser to use assisted dying is one too many. I am confident that all hon. Members would agree with me on that deeply important point.
In the last few days, I have been looking at suicide, and one of the issues that has come up is that last year, for the first time in our history, suicide by victims of domestic violence overtook deaths from what we would term intimate partner homicide. In the last two weeks, there have been further reports highlighting that the number of women driven to suicide because of the experience of domestic violence has risen. Tomorrow, my hon. Friend the Member for Birmingham Yardley (Jess Phillips) will read the name of every woman who has been killed in the last year, as she does every year. Two of those women were my constituents, and many more kill themselves to get away from their abusers.
The Chair
Order. I understand where the hon. Member is coming from, but I think she is very close to moving outside the scope of the amendment, so can I ask her to bear that in mind? As I have said, this is a very sensitive issue and I am giving people latitude, but that cannot go too far. I do not want to interrupt Members, but I will if they do not stick to the confines of the amendment.
Naz Shah
I am grateful, Mr Dowd. I will bring my remarks back to the issue in the amendment, which is related to training. I will also bring them back to the issue of interpreters.
In November 2023, the Imkaan group issued a report, “Life or Death?” It literally is a matter of life and death. The report talked about the use of interpreters, training and minoritised women. Imkaan said that
“The availability and use of quality interpreting services can be critical to women’s access to safety and protection”
and that the current position on police use of interpreters breaches the Equality Act and amounts to indirect discrimination. It also breaches the commitments under the Istanbul convention. I appreciate that that issue is about police training, but surely the principles are exactly the same. We have a service—the police and domestic violence services—which supports victims of coercive control and of domestic violence. Unfortunately they come into contact with it, as our NHS and our medics do, way too often for my liking.
The Chair
Order. The issue of interpreters is not within this group. I am just trying to look for that and it is not in this group, so I am afraid the hon. Lady is out of scope of the clause. It is in a later group, so perhaps she could pick it up then.
Naz Shah
I thank you, Mr Dowd. My apologies. I have made a mistake, but I was referencing the comments of the right hon. Member for Dwyfor Meirionnydd about the use of languages, which is the subject of one of the amendments; that is my understanding. But again, I am happy to be guided by you, Mr Dowd.
To come back to the issue of training and domestic violence, in Committee, we heard evidence from Dr Jamilla Hussain about minoritised women. Again, from the data collection of ethnic minority groups, training is right at the top of the agenda, whether it be training of doctors or specialists.
Language is important when it comes to training as well. When people are training or trained to look at coercive control and to spot that coercive control, there is often an interpreter between them and the victim who is being assessed. They may be an ethnic minority woman or a man from an ethnic minority background whose first language is not English, so that training would need to include cultural sensitivities in relation to spotting coercion and control, and to repeated coercion in particular.
These are subjects that are already taboo for people to discuss. We know the issue of domestic violence is hard to spot. We have repeated that time and again, as have others. We talk about training, but that has to go further when it comes to victims or people seeking assisted dying who are from ethnic minority backgrounds and who have different cultural understandings. I talked about yesterday that. The hon. Member for Reigate also talked about the issue: the understanding of assisted dying among ethnic minority communities is very different if there is a language barrier.
I would like to ask the promoter of the Bill, my hon. Friend the Member for Spen Valley, whether her amendment will go further in addressing some of the inequalities and intricacies that are presented when we are dealing with women from ethnic minority communities or elderly people from ethnic minority communities. I would be happy to sit down and talk her through those issues, so that I can support the development of her amendment to address the concerns I have raised today.
Danny Kruger
The hon. Lady talked earlier about the tragedy of victims of coercive control who commit suicide. Does she consider that the amendments we are looking at will help to address that challenge? What specific support does she think victims of coercive control would need to prevent them from taking that terrible step?
Naz Shah
The hon. Member asks a very important question. When I am talking about reflective services for black and minority ethnic communities, which is something I have delivered training on and worked on in a previous role, I often use the example of my mother, who was a victim of domestic violence. Had she been arrested by a woman instead of a man, her experience might have been different. Had she had a solicitor who was a woman, not a man, her experience might have been different. Had she had judges who were women, not men, her experience might have been different. Let us now add another layer to that. Had the police officer been a woman from the background she was from, they might have understood it.
The same analogy potentially applies to patients who are asking about going down the route of assisted dying, because it is helpful if somebody comes from the same cultural background. If a female victim of domestic violence or coercive control meets a specialist doctor who looks very similar to the hon. Member for East Wiltshire—a white, middle-class male—and he does not have that cultural understanding, he will then rely upon training, and he will no doubt rely upon an interpreter to translate.
That is the kind of thing I am trying to tease out, and these are the kinds of protections I want to see in the Bill. If we want a Rolls-Royce service, and if this is to be the best Bill in the world, it cannot ignore the most vulnerable in society. If the patient is a disabled woman, it is whammy upon whammy and layers upon layers of intersectionality that the Bill does not address. That is why I want to see the Bill strengthened.
I want to talk about the training that doctors get and the training in palliative care. We heard from Dr Jamilla Hussain, who was very clear about the fear among minoritised communities because of what happened during the covid pandemic, with “do not resuscitate” orders and their whole experience. Some people potentially died who could have been saved because they did not have the trust in NHS services to access them.
In this instance, it is important that we have a first doctor. That first doctor might have no relationship with the patient because their regular doctor does not want to engage in the process. Let us take the example of a patient in Bradford West who has had a diagnosis of terminal illness. They might well have a doctor or consultant who has been dealing with them for six months or even a year, to the point where they have reached the terminal stage. They might have a relationship with that doctor, who might have spoken their language and might be from a particular faith background but who does not want to engage in the assisted dying process. According to the Bill, that doctor would then have to refer that patient on to somebody who is prepared to have that conversation, but that person might not have that training or those language skills, and they might not—
The Chair
Order. The hon. Lady needs to keep her remarks to amendment 20. I have looked at other amendments to which this is relevant, including amendment 186, but that has been starred. I exhort the hon. Lady to focus on the particular issues covered by amendment 20.
Naz Shah
Thank you, Mr Dowd. My understanding is that this all relates to amendment 20, and I am happy to clarify why. Ultimately, this is about the professional’s intervention with a patient, and the amendment is about training people adequately to assess coercive control and domestic violence. I am trying to demonstrate—I accept that I might not be doing it well enough—that there is a pathway and a catalogue of things that relate back to the person who is being assessed. I am trying to explain to the Committee in detail, because I feel very strongly about it, what that care pathway might look like for somebody, and why the amendment, although I welcome it, does not safeguard the most vulnerable in society. I am happy to be guided if that is not what I am doing, but that is certainly what I am attempting to do. May I carry on, Mr Dowd?
The Chair
The hon. Lady should take this in the spirit in which it is intended. Dipping in and out of issues throughout the course of a speech is okay, but I am afraid that dipping in and out of issues that are not relevant is not, and we are getting to the stage where the information she is imparting is not necessarily relevant, in significant elements, to the amendments that we are dealing with.
The Chair
Order. My ruling from the Chair cannot be challenged. I exhort the hon. Lady to stick to the amendments before us. If she does not, I will have no other option but to intervene and move the debate on.
Naz Shah
Thank you, Mr Dowd.
I come back to the issue of potential coercive control, which is what amendment 20 addresses. As I have outlined, there are patients who could be in that position. Given the examples that I have put before the Committee, I argue that the amendment, although it is brilliant in getting us to a better place than where we started out with the Bill—I am pleased that my hon. Friend the Member for Spen Valley has indicated that she is happy to discuss strengthening the safeguards—does not go far enough, for the very reasons that I have outlined, and no doubt will outline further when speaking to other amendments.
The Minister for Care (Stephen Kinnock)
It is a pleasure to serve under your chairship, Mr Dowd. As I have said, the Government remain neutral and my role is not to offer a Government view on the merits of the amendments, but to provide a factual explanation of their technical and practical effect to assist the Committee in its scrutiny.
The Government remain committed to ensuring the legal robustness and workability of all legislation, so I have worked closely with my hon. Friend the Member for Spen Valley on some amendments. Where changes have been mutually agreed by my hon. Friend and the Government, I will offer a technical, factual explanation and rationale for the amendments. Those include amendments 185 and 186 in this group. The Government remain neutral on the Bill and do not have a position on assisted dying.
This group relates to the necessary training, qualifications and experience of the co-ordinating doctor. As drafted, clause 5 gives the Secretary of State the power to specify the training, qualifications and experience required for a registered medical practitioner to act as a co-ordinating doctor, but there is no legal duty for the Secretary of State to do so. Amendments in this group either seek to change that power to a legal duty, or would introduce specific training, qualifications and experiential requirements for a registered medical practitioner to act as a co-ordinating doctor.
Amendments 185 and 186 tabled by my hon. Friend the Member for Spen Valley would introduce a duty on the Secretary of State to make regulations regarding the necessary training, qualifications and experience of the co-ordinating doctor. Giving the Secretary of State a duty rather than merely a power would ensure certainty as to the training, qualifications and experience that the registered medical practitioner must have in order to act as a co-ordinating doctor. The Secretary of State’s duty in this respect would include making provision in regulations about training for co-ordinating doctors relating to assessing capacity and assessing whether a person has been coerced or pressured by another person. Amendment 186 would also enable the Secretary of State, subject to the specific training requirements already mentioned, to delegate the determination of the training, qualifications and experience needed for a co-ordinating doctor to a person specified in the regulations. That would allow that determination to be delegated to a body or bodies with appropriate expertise, in line with other aspects of training for healthcare professionals.
Dr Opher
Exactly. That is what worries me. I acknowledge what the hon. Member for East Wiltshire said about pharmaceutical sponsorship, but I do not think that has anything to do with what we are talking about here. What we are talking about is specifying what doctors are doing as part of their daily job, for which they are trained. It would not be fair to publish those figures and put those doctors at risk.
Naz Shah
I appreciate what my hon. Friend is saying, because I have mixed views on this. I would like to understand what would be appropriate. My concern is that there will be a difference, because doctors normally have these set-ups for treatment options but, in this instance, the service is not a treatment, so to speak. I genuinely want to understand: in his eyes, what would a good service that provided scrutiny and accountability look like?
Dr Opher
There are examples. Appraising other doctors, for instance, is specified as a job that doctors are trained for, and it is paid at a set rate agreed with the Department of Health and Social Care. There are many instances where this occurs. I totally agree that the fee a doctor attracts for the service should be clearly specified and in the public domain, but I do not agree that a single doctor should be identified as having seen, say, 10 patients who have requested assisted death. I think that is unnecessary, will not lead to increased patient safety and will make it less safe for the medical practitioners too.
Stephen Kinnock
The challenge in the hon. Gentleman’s amendment is the term “total turnover.” A GP would have to extrapolate from the service provided to a whole range of other costs that may apply—for example, the share of the overhead they pay into their primary care network, the share of admin costs or the rent on their building. The definition of total turnover is the entire cost and entire revenue from the tariffs. As officials have made clear, this additional level of complexity would be an onerous task, although not necessarily impossible.
Total turnover is one side of this issue; the other, much more salient point is the quantum leap between having transparency on a particular tariff and pointing at a specific doctor and saying, “You over there—you did this much work on that much tariff, and that’s how much money you made for it.” There is a big difference between the two.
Naz Shah
I also do not like the idea of doctors being identified in such a way, as they have with abortion clinics, but I am trying to understand how we will protect these services. If it is an NHS provision and specialty, with doctors in certain practices signing up to provide services for assisted dying and becoming either the primary or the secondary doctor, by definition those will be the practices to which people will refer. That will become common knowledge, just as it is for musculoskeletal or podiatry services, for example. In this instance, there would be an assisted death service, and there would clearly be practices that do not provide it. How would we then protect the doctors? How will the Government respond to all these concerns?
Terminally Ill Adults (End of Life) Bill (Nineteeth sitting)
Naz Shah ExcerptsWednesday 5th March 2025
(4 weeks, 1 day ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 5 March 2025 - (5 Mar 2025)
Kim Leadbeater
Amendment 419 provides that the co-ordinating doctor may witness the first declaration only if satisfied that a preliminary discussion of the kind mentioned in clause 4 has taken place and that a written record of it has been made. The co-ordinating doctor must have made or seen a written record of the preliminary discussion. Amendment 189 adjusts the wording so as not to suggest that a first declaration has been made before it is witnessed to clarify that proof of identity must be provided before the declaration is signed and witnessed.
Amendment 190 provides that the required two forms of proof of identity must be provided before the person signs the first declaration. Amendment 191 provides that the co-ordinating doctor may witness the first declaration only if satisfied that the requirements of clause 6(2) are met; that is to say, that the patient has provided two forms of identity to the co-ordinating doctor. This is a relatively straightforward set of amendments to tidy up the requirements around proof of identity.
Naz Shah (Bradford West) (Lab)
I rise to speak to amendments 291, 292 and 293, which were tabled by my hon. Friend the Member for York Central (Rachael Maskell). I do not intend to press them to a vote; they are probing amendments. They all relate to the amendments tabled by my hon. Friend the Member for Spen Valley about the identification required of applicants for assisted dying. They do not change those requirements; they take a more logical and businesslike approach to proving that those requirements are met.
Amendment 291 would change the current requirements on identification and require applicants for assisted dying to produce a piece of photo ID and proof of residence in the UK for the previous year. As currently written, clause 6(2) states:
“The person must, at the same time as that declaration is made, provide two forms of proof of identity to the coordinating doctor and the witness mentioned in section 5(2)(c)(ii).”
Subsection (3) states:
“The Secretary of State may, by regulations, make provision about the forms of proof of identity that are acceptable for the purposes of subsection (2).”
Surely that is not tight enough.
In particular, the Bill as written does not specify that either form of proof of identity should be photo ID. That may be a major omission. For much less significant decisions, the law of England and Wales requires at least one form of photographic ID. For example, there is currently a requirement to have photo identity to work on the parliamentary estate, vote, or have a bus pass or railcard. None of those is as important as applying for an assisted death.
I remind hon. Members that assisted death is a process that would end in a person being issued with and then taking a mixture of lethal drugs. In a hospital setting where drugs are dispensed, rigorous processes are undertaken to verify the patient. Drug errors are not uncommon. The previous Health and Social Care Committee’s report into pharmacy witnessed how clinical practice was being improved to reduce drug errors. Given that a lethal dose is dispensed as part of this process, the identification mechanisms are weak and should be addressed in this preliminary stage through the provisions set out in this amendment. It is possible that the wrong person could be prescribed the medication. That would be an extreme case, but we are talking about creating a wholly new power that would relate to life and death. We are talking about making assisted dying available to people who are, in many cases, extremely distressed. People in extreme circumstances will sometimes do extreme things. We should expect some extreme cases and seek to guard against them.
Amendment 291 would provide such a safeguard. The Bill says that to qualify for assisted dying, applicants must have been resident in the UK for at least a year, but it does not ask them to provide any proof of that residence. In such a serious matter, we surely cannot simply accept someone’s word that they live in the UK. Making that a requirement without a test to establish it de-values the importance of the criteria for qualifying.
Amendment 292 would change clause 6(3), which currently reads,
“The Secretary of State may, by regulations, make provision about the forms of proof of identity that are acceptable for the purposes of subsection (2).”
The amendment would change that “may” to a “must”, as the former treats the identification process with reduced seriousness. If the word “may” stays in legislation, there is no obligation to have rigour in the identification process. As drafted, the Bill is more open for abuse.
Amendment 293 seeks to place the regulations concerning identification under the affirmative procedure, which the hon. Member for East Wiltshire mentioned earlier. Assisted dying is so important that no regulations made under it should be drawn using the negative procedure. As Members will know, if a statutory instrument is made under the affirmative procedure, it must be approved by Parliament within a certain timeframe, which is usually 28 or 40 days. If that does not happen, the change to the law made by the statutory instrument will not take place. In the Bill as drafted, these regulations are covered by the negative procedure, which means that if and when the Secretary of State decides to change them, they could go through on the nod unless Members raised an objection. A statutory instrument laid through the negative procedure becomes law on the day the Minister signs it and automatically remains law unless a motion rejecting it is passed by either House within 40 sitting days.
Placing all changes to regulations under the affirmative procedure would ensure that we have scrutiny by Parliament. We should all approve this. Our responsibility for this legislation will not end when and if it becomes an Act of Parliament. These amendments speak to tighter safeguards and parliamentary scrutiny for all new regulations made by the Secretary of State in relation to identity and residence. All hon. Members should support them.
Danny Kruger
I will quickly echo the points well made by the hon. Member for Bradford West in support of the amendments in the name of the hon. Member for York Central. It is important to specify the form of identity that will be presented. The person presenting themselves for an assisted death needs to be who they say they are. At the moment, the power to specify the forms of proof of identity has no minimum requirements. As written, it does not require the Secretary of State to specify what is acceptable.
Two specific aspects we have to pay particular care to are age and residency. The process must be accessible only to over-18s. I am concerned that we rejected amendments yesterday that would have prevented people under 18 having the conversation. In light of that, it is even more important that we make it clear that people who access assisted death must be adults. We need to ensure that the forms of identity are specified and that Parliament can satisfy itself that they are robust.
Danny Kruger
We cannot have it both ways. We cannot give doctors and clinicians autonomy, which the Committee has repeatedly seen as a ground to reject all sorts of obligations that I and others have proposed to ensure that doctors do the job in a specific way, and then suggest the opposite in this instance. I recognise what the hon. Gentleman says, and he may be right that that is inappropriate.
Danny Kruger
The hon. Lady is absolutely right. We should not forget that doctors are indemnified against any civil claims under the Bill. Nevertheless, they will want to protect themselves against the accusation that they inappropriately prioritised one case over another. That is the purpose of the amendment, and I urge the Committee to support it.
I will finish with this point. I am ashamed to say it, because my party was responsible for the NHS for the 14 years until last year, but the fact is, as Labour Members said frequently when they were in opposition, that there are enormous resource constraints on the frontline in the NHS. I do not think that is inappropriate to consider, when we create a new service, how it might have an impact on existing treatments in the NHS. Leaving aside all the ethical questions, including on coercion and capacity and our concerns in that respect, what will this mean for hard-pressed GPs and clinicians of all sorts on the frontline? What protections can we offer them when they make difficult decisions about whether to support an assisted death application?
Kim Leadbeater
That has been a very useful discussion. I have nothing to add.
Daniel Francis
I beg to move amendment 347, in clause 7, page 4, line 4, leave out from “to” to the second “the” in line 5 and insert—
“ensure that steps have been taken to confirm that”.
This amendment would remove the emphasis on the role of the coordinating doctor in making these assessments.
Daniel Francis
I agree with my hon. Friend about the number of amendments in this vein, but clearly the amendments suggested by my hon. Friend the Member for Hackney South and Shoreditch bring us into line with existing regulations. In her evidence, Dr Cox said:
“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]
It is likely, therefore, that those diagnosed with a terminal illness will experience mental distress that could affect their capacity to make a decision about an assisted death. In her written evidence, Dr Virginia Goncalves, a retired clinical psychiatrist with over 30 years of experience in the NHS, writes:
“In my consultant psychiatrist role, I have encountered many desperate and suicidal patients wanting to end their lives after struggling with longstanding mental distress, who could have easily sought the option of assisted suicide if it had been available to them! But however depressed and hopeless they felt, with a compassionate and hope filled approach from their care givers and the correct medical and psychological treatment, the vast majority recovered enough to be able to have a ‘life worth living’. In so many cases, these patients have thanked me later for not giving up on them! Not once have I heard anyone say ‘you should have let me die when I wanted to do it’.”
A meeting with a psychiatrist or other psychological specialist will protect people who may otherwise not have chosen assisted dying. I emphasise again that we already ensure that patients who will donate an organ have this assessment, so why not those seeking an assisted death? We must protect vulnerable terminally ill people from being coerced into assisted death, and psychiatrists and other specialists are best placed to spot that. That is why the assessment is included for living organ donation.
Daniel Francis
Absolutely. This amendment, of course, is widely supported by Committee members for that very reason. As I was saying, we already use that assessment for organ donation, and Members supporting this amendment believe that should be the case for those that are seeking an assisted death.
I now move on to amendment 284, in the name of my hon. Friend the Member for York Central. This amendment would change clause 9(3). Currently, that subsection lays out, and I will quote the language of the Bill, that the assessing doctor,
“(b) may, if they have doubt as to the capacity of the person being assessed, refer the person for assessment by a registered medical practitioner who is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council or who otherwise holds qualifications in or has experience of the assessment of capability;”
This amendment would change the word “may” to “must”. In other words, the assessing doctor would have a duty to refer the person being assessed to a consultant psychiatrist if they had any doubt about that person’s capacity. I argue that this is a change that we both should make, and can easily make. If a doctor has doubts about the capacity of an applicant, it is good practice for them to refer that person to a doctor or a specialist in that field.
Dr Opher
I agree with all of this. I think psychological assessment is incredibly important in all patients, and I personally specialise in it from a primary care basis. But we are suggesting here that the two other doctors have no ability to do any sort of psychological assessment, and that is simply not true.
Dr Opher
I apologise to my hon. Friend; I will continue for a little bit. We use secondary care and psychiatrists when we have a doubt about our decisions. If we have a doubt, then it is entirely appropriate to use psychiatrists in that instance, and we must do so. That is why I approve of amendment 6.
Dr Opher
I completely agree with the right hon. Gentleman. By amending clause 12 to include social workers, who specialise in spotting coercion, there would be a psychological component in that panel. I emphasise that the first two doctors are trained in psychological assessment—they have to be to become a doctor, and we must respect their knowledge and decision making. Psychiatrists will be incredibly useful in difficult cases of capacity, but using them in every case would not be using them in the best capacity.
Naz Shah
My hon. Friend is being generous with his time. I do not question the capability of those doctors, but how does that square with the concerns of the Royal College of Psychiatrists that if a doctor has never met the person before, they cannot make an assessment on coercion? That might impact on capacity.
Terminally Ill Adults (End of Life) Bill (Sixteenth sitting)
Naz Shah ExcerptsTuesday 4th March 2025
(4 weeks, 2 days ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 4 March 2025 - (4 Mar 2025)
Dr Simon Opher (Stroud) (Lab)
I will briefly go through my impressions of the amendments. A lot of amendments in this group call to mind one of the difficulties that we are having in Committee, which is about the role of professional integrity against what we should be putting down in law. One problem is that, if we state something in law and a professional does not do it, then they are acting in an illegal way—and that introduces a different concept into a medical consultation. We must be very careful about introducing to a medical consultation a load of requirements in law, therefore reducing the freedom of that consultation whereby the doctor and patient can decide on what is best for the patient.
Amendment 342 is in the name of my hon. Friend the Member for Shipley. I reiterate that all the amendments have been tabled in good faith, and I absolutely respect them. The amendment would mean that the initial doctor—who is likely to be a GP—to whom the person comes and wants to speak to about assisted dying “must” conduct a preliminary discussion, rather than
“may (but is not required to)”.
The problem there is that some doctors will be conscientious objectors to assisted dying and we have to protect their integrity. We must not force them to do something that is against their will.
I note that amendment 341, which we will come to later, is about the obligation to give information to the patient if they ask for assisted dying. That is an appropriate amendment, but forcing a doctor who does not agree with assisted dying to discuss it is not fair on the medical practitioner. That is not what the Bill is about. In many other places, there is freedom for the medical doctor to avoid getting involved in discussions if they do not wish to. That is an incredibly important part of, and concept in, this Bill. Without that, I think the medical profession would not accept the Bill. That is very important.
Amendment 285 is about needing to consult a specialist in the relevant illness. I think we need to understand the process of what will happen under the Bill. Let us take an example of a patient under an oncologist—a cancer specialist. The oncologist will almost certainly say at some point during the consultation with the patient, “I think that there is no further treatment that is going to prolong your life, and you are likely to have six months or less to live.” That will be done by a specialist. I do not know general practitioners who would confidently predict a prognosis of six months or less; it would come from a specialist. Indeed, cancer care in this country, until the palliative phase, is generally run by specialists and hospitals. GPs are not generally involved, apart from to support the patient. However, if the oncologist feels that the patient has less than six months to live, they would probably come to see the doctor under this legislation, and the initial discussion will then take place. They will already have a steer as to the likely prognosis.
Naz Shah (Bradford West) (Lab)
I am trying to understand. My hon. Friend is saying that the oncologist is a specialist, but that they might not be the first doctor to have the first discussion; he said that they might not want to be a part of this process. I would like to understand that a bit more.
Dr Opher
As far as I see, under the Bill there is an initial discussion when a patient who is requesting assisted dying goes to see a medical practitioner. It does not specify what type of practitioner, which is good because it means they can ask either the oncologist or the general practitioner. That initial discussion is with a doctor, and then the doctor will refer for the first declaration, or they may do the first declaration themselves. That is how the Bill is set out, but the general practitioner will have had specialist opinions on the patient. They would not just say, “Well, maybe you’ve got less than six months to live—I don’t really know, but let’s have a guess.” This will be based on informed information from a specialist.
Dr Opher
Again, I bring my hon. Friend back to the fact that this is a Bill in law, and what we have to guide us as doctors is the General Medical Council, which sets standards for doctors. That is how we do it. If we are hemmed in by legal matters, we can break the law without being aware of it, if we are not careful. If too many legal parameters are set around medical consultations, the patient will get less good care because the doctor will not be free to offer it. I can see that my hon. Friend does not agree with that, but it is the case.
Lewis Atkinson
I will be brief, as I am conscious that the Committee needs to make progress. I will speak briefly to amendment 275 in my name, which, as others have said, amends the current reference of “any available” to “all appropriate”. Listen—people at the end of their life deserve the best. They deserve to know about and have the option to access all appropriate care. In my experience of the NHS, that is exactly what clinical teams ensure patients get. But we need to guard against any suggestion that the information given should be somehow filtered around availability, which I know is not the intention of my hon. Friend the Member for Spen Valley.
In my experience, views on availability are often incorrect anyway, so ensuring that “all appropriate” options are offered in information is the best thing to do. If nothing else, it creates a level of societal pressure to ensure that all appropriate care is available, which I hope we can all support.
Lewis Atkinson
No, I am going to make some progress because I am conscious of the time, and we want to get through these provisions.
I want to speak in favour of amendments 108 and 183. Those two amendments, taken together with amendment 275, create additional safeguards and assurances on the points made by colleagues on Second Reading that this is not cannot be raised in isolation—as my hon. Friend the Member for Spen Valley has made clear should not be the case—and that referral should always be offered to specialists in palliative and wider care.
As others have said, those patients will almost undoubtedly be in touch with a variety of different multidisciplinary healthcare teams. The suggestion that there must be a further referral to another multidisciplinary team under the Bill, regardless of which teams an individual is seeing, is therefore not appropriate. I also refer Members to amendment 6 to clause 9, which states that a referral to a psychiatrist “must” be made. My hon. Friend the Member for Spen Valley has indicated that she is in favour of that amendment. That reinforces the fact that there will be a multidisciplinary approach, including psychiatric input, where there is any doubt before the third-tier stage of the panel.
For those reasons, I do not feel the other amendments—285, 343 and so on—are necessary. By accepting amendments 275, 108 and 183, we will be able to strengthen the Bill in the way that was set out to the House, and as we heard in oral and written evidence.
Sojan Joseph
There are other people who support this concept, and they are the people who will be having the conversation—we have both sides of the argument. I believe that the best person to have that preliminary discussion would be the doctor who knows about that patient the most—about their circumstances, prognosis, family situation and pain. We talk about compassionate care, but where is the compassion in here? I am not saying that another doctor would deny that—but I am talking about compassion. Someone going through the most difficult time in their life would have the confidence to talk to the person who knows the most about them, which is why I fully support that the initial discussion should happen with them. I am not saying that they should say yes or no, but they should be talking about the care provisions and options available to the patient. Amendment 342 is one of the most important amendments we will debate.
I will move on to amendment 425. When I tabled amendment 1, my thinking was that a psychiatrist should be involved in these discussions, but I think amendment 425 will safeguard most of the concerns we have discussed in previous sittings. Amendment 425 talks about a “multidisciplinary team” and having a psychiatrist involved as well. Written evidence was sent to us on 29 January by the Royal College of General Practitioners, which recommended that a separate pathway that
“covered every stage of the process would ensure healthcare professionals of multiple disciplines…who wanted to do so could still opt in to provide assisted dying, but this would be arranged through a different pathway.”
The hon. Member for Sunderland Central spoke earlier about how patients may be going through many multidisciplinary teams already, but it could be that none of those multidisciplinary teams have talked with them about assisted dying. They could have been pharmacists or nurses talking about the patient’s care—not assisted dying. We are talking about setting up a multidisciplinary team with a mental health nurse, doctor and social worker who can look in detail at evidence of the patient’s capacity, whether they are choosing it because they feel they are a burden, and whether there is any coercion. I think that is a safeguard for most of the concerns we have discussed in previous sessions. I would love to see a psychiatrist involved, because psychiatrists deal with some of the most challenging patients, including those with suicidal thoughts, on a day-to-day basis. They are the most experienced people to carry out a capacity assessment and, if they are a part of the multidisciplinary team, it will safeguard the Bill.
I strongly support amendment 425 and I urge Members to consider it. It will reassure many people who are concerned about some of the discussions. I know it also talks about giving power to the Secretary of State to formalise who should be part of the multidisciplinary team, which would be a discussion for later. I thank the Committee for giving me the opportunity to speak in support of the amendment.
Naz Shah
I rise to speak to amendments 285 and 286, tabled by my hon. Friend the Member for York Central. On amendment 285, we have to understand that, in medicine, clinicians only retain the areas of expertise in which they have clear confidence. I am grateful to my hon. Friend the Member for Stroud, who made very powerful points that, if anything, actually support this amendment. This is why we have developed a health system with so many specialities. Although generalists have incredible knowledge, they cannot confess to the depth of understanding that someone who dedicates their career to a speciality has. Therefore, the amendment seeks to draw on such knowledge rather than assume that a GP, for example, specialises in all fields of medicine.
Clause 4(4) would require a generalist to work alongside a specialist to secure the understanding of a patient’s diagnosis and prognosis. Once again, I recognise that my hon. Friend the Member for Stroud suggested that that already happens and does not need to be tied up in law. However, I feel the amendment gives us more protections if we are to make the Bill safe. It would then enable specialist clinical advice to be provided in the conversation about treatment options.
Danny Kruger
I am afraid the situation is even worse, because the fact is that under the Bill they will not be liable for mistakes made in pursuit of the scheme set out in the Bill. They will be exempt. They are indemnified against civil liabilities for malpractice in the course of their job. It is only guidance, and GMC guidance specifies that breaking the guidance is not itself necessarily considered a serious matter. The provisions are not strong enough at all.
Naz Shah
The hon. Member makes a valid point. That brings us to a very important question: do we wait for something to have happened? In this instance, people will have died.
If we were considering kidneys, for example, and the issue of consent, it would require somebody independent. It needs a specialist. We come back to the point about specialisms: whether they relate to diagnosis, coercion, the care pathway, palliative care or the drugs that bring a person’s life to an end, which we will discuss later, these are specialisms. I know that later my hon. Friend the Member for Spen Valley will speak to her amendment about the panel, which is intended to require expertise. That is what amendment 285 speaks to, and I hope hon. Members will support it.
Amendment 286 would set out the requirements for the co-ordinating doctor and ensure that the standards are upheld throughout the process of assessment, so that the patient and clinician have the highest levels of advice available. Even though the co-ordinating doctor might already have sought the advice of specialists as part of their assessment, the purpose of having an independent doctor is to assess the patient without preconceptions influenced by the co-ordinating doctor’s decision-making process. It is therefore important for the clinician to have access to the same level of advice to inform their clinical decision making.
In medical practice, should a second opinion be sought, the person providing that second opinion might consult a range of sources to establish an opinion. This measure would therefore be in line with normal medical practice. I hope that hon. Members will support the amendments.
Dr Tidball
I will make progress.
Clause 4 creates no duty to raise assisted dying, a point supported by the BMA. Keeping things secret is not helpful for the patient making such difficult decisions about how best to live their death with dignity and respect.
Dr Tidball
I will make progress.
In reply to a question from me about those who are seeking assistance, Dr Jane Neerkin, a consultant physician in palliative medicine, said:
“For them, it is about trying to regain some of that control and autonomy and being able to voice for themselves what they want. That is what I tend to see that people want back at the end of life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 201, Q263.]
Importantly, amendments 183 and 275 would strengthen clause 4 to ensure that we avoid a situation that gives those with the most social capital more choice, while leaving those who might otherwise be unaware of all other options available to them without that choice. If the Bill is passed by Parliament without them, it will exacerbate health inequalities rather than abating them.
Together, the amendments expound and elaborate on the need for discussion of all appropriate palliative and other end-of-life options available to someone with a six-month terminal illness. I commend them to the Committee.
Stephen Kinnock
The amendments would make changes to the discussion between the medical practitioner and the patient. They are largely focused on clause 4, on the initial discussions, but several are thematically linked or related to later clauses.
Amendment 342 would impose a requirement on the registered medical practitioner to conduct a preliminary discussion with a person where that person has indicated that they wish to seek assistance to end their own life. As it stands, the Bill allows registered medical practitioners to opt out should they not wish to hold that conversation with someone, although they have an obligation under clause 4(5) to refer an individual to another medical practitioner for that discussion.
The amendment would remove that discretion and thus remove the opportunity for a medical professional to opt out of having the preliminary discussion. That may conflict with the principle set out in clause 23 that no registered medical practitioner or other healthcare professional is under any duty to participate in the provision of assistance. Our analysis suggests that in removing discretion as to participation, the amendment could interfere with an individual’s rights under article 9 of the European convention on human rights, on the freedom of thought, belief and religion, and article 14, on the prohibition of discrimination.
Amendment 285 would require the registered medical practitioner who conducts a preliminary discussion with a person on the subject of an assisted death to discuss with them, in consultation with a specialist, the person’s diagnosis and prognosis, any treatments available and their likely effects, and any available palliative, hospice or other care. The amendment would therefore require additional registered medical practitioners or other specialists to be consulted as part of the preliminary discussion under clause 4(4). The additional time required for consultation with specialists would be likely to lengthen the period over which a preliminary discussion can take place.
I also note that clause 9, “Doctors’ assessments: further provision”, will already require the assessing doctor to make such other inquiries as they consider appropriate in relation to the first and second assessments.
Naz Shah
The Minister’s point speaks to what my hon. Friend the Member for Stroud and I have spoken about in relation to the amendment, so I wonder which bit he supports. The Minister says that there will be extra time, but my hon. Friend pointed out that doctors do this routinely, so the objection is only that it will be on the face of the Bill. I just want to understand the Minister’s position on that.
Stephen Kinnock
If I understood the point that my hon. Friend the Member for Stroud was making, I think it was that the basic provisions in place enable doctors to carry out their work based on their experience and expertise, whereas the amendment would require additional registered medical practitioners or other specialists, so that would be in addition to what my hon. Friend was talking about.
I turn to amendment 343. As the Bill stands, a registered medical practitioner undertaking a preliminary discussion with a patient is required to discuss the person’s diagnosis and prognosis. The amendment would require a registered medical practitioner also to discuss any relevant probabilities and uncertainties of a person’s diagnosis and prognosis. It would put an additional legal requirement on what needs to be discussed during the preliminary discussion with the patient. In considering whether the amendment is required, the Committee may wish to note that all doctors acting in accordance with the General Medical Council’s “Good medical practice” are expected to discuss uncertainties about diagnosis and prognosis, and potential risks and uncertainties about treatment.
Under clause 4, the registered medical practitioner conducting the preliminary discussion must discuss any treatment available to the patient and the likely effect. Amendment 344 would require the registered medical practitioner conducting the initial discussion to discuss, as part of the conversation on the treatments available, the risks and benefits of such treatment, potential side effects and the impact of the treatment on the person’s quality and length of life. As with amendment 343, the Committee may wish to note, when considering whether the amendment is required, that all doctors acting in accordance with “Good medical practice” are expected to discuss the risks, benefits, uncertainties and the likelihood of success of treatment with a patient.
Amendment 275 would change the wording of clause 4(4)(c) to “all appropriate palliative hospice and other care”. That would require a registered medical practitioner who conducts a preliminary discussion with a person on the provision of an assisted death to explain and discuss palliative and hospice care on the basis of appropriateness for the individual, not on the basis of the care that is available. Clause 4(4) sets out that a registered medical practitioner who conducts the preliminary discussion on assisted dying must, as part of that discussion, explain and discuss the person’s diagnosis and prognosis, any treatment available and the likely effect—
Terminally Ill Adults (End of Life) Bill (Seventeenth sitting)
Naz Shah ExcerptsTuesday 4th March 2025
(4 weeks, 2 days ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 4 March 2025 - (4 Mar 2025)
Daniel Francis (Bexleyheath and Crayford) (Lab)
I echo the points that have been made about the importance of the initial conversations, particularly for those who do not have English as their first language. I made a commitment to my hon. Friend the Member for Ipswich that in his absence I would press amendments 414 and 415 to a Division, as he requested.
I support the general principles of the amendments relating to those who are seeking or who need interpretation to explain aspects of assisted dying to them. I support the merit of that principle and the intention behind amendments 414 and 415.
Naz Shah (Bradford West) (Lab)
Like the right hon. Member for Dwyfor Meirionnydd and the hon. Member for Reigate, I will not press the amendments to a vote, but I certainly want to speak to them. I do not think that they go far enough. Let us put ourselves in the position of people of colour: if the English language is seen as superior to or more powerful than Welsh, that means an extra layer of intervention that I do not think the amendments quite capture. We have not even talked about British Sign Language in our discussion of languages, but it is also really important.
I am a qualified interpreter from Urdu to English—in health, funnily enough—and I can tell the Committee that in Urdu there is not even a word for depression. The word for depression does not exist. In a previous life I chaired the largest mental health charity outside London for ethnic minority communities, and I am a former NHS commissioner, so when we talk about health inequalities and patient intervention, I understand acutely the nuances involved in translating from one language to another.
In the first instance, there is a language that someone does not understand. In the second instance, particularly for minority communities who speak languages from the south Asian subcontinent such as Punjabi, Urdu or Hindi, the words do not exist to translate the Bill literally or to talk about assisted death. That speaks to the point that the hon. Member for Reigate made about understanding what it means. I have the same stats that she cited, which show that people do not understand what assisted death is.
I would really value a response from the Minister and from my hon. Friend the Member for Spen Valley to these questions about the nuances of having such a difficult conversation. These are really brave conversations, both on the doctor’s side and on the patient’s. Take a woman from an ethnic minority background whose first language is not English and whose doctor is unable to translate their conversation with her. Would that conversation be disempowering? Would it be empowering? Would we be doing a disservice to that person, with the best will in the world from the doctor? I really would like to understand what consideration is being given to making this accessible, if it is to be a service and a piece of legislation that is open equally to all.
I have mentioned this point a few times and have raised it with the Minister, and I appreciate that the Minister has responded, but this is where my frustration—for want of a better word—comes from about not having an impact assessment in the first place. If we had had an impact assessment, the Government would have looked at these things. Even with small Bills, we go out to consultation for weeks and weeks. With this Bill, we have not spoken to anybody during Committee stage about the nuances of the provisions on languages and what they will mean for patients. Although I support the essence of what the amendments are attempting to achieve, they fall short of providing the necessary protections. I do not know how the Government will address that.
Sean Woodcock
I am grateful for that intervention, which goes to the heart of my next question: why would we record and document later conversations, but not the initial one? That conversation could be one in which coercion takes place and without a record of it happening, patients and doctors are at risk. We have acknowledged that patients can be influenced by their doctors, whether consciously or unconsciously. We also noted how certain groups lack trust in the healthcare system. Dr Jamilla Hussain, in her written evidence, TIAB252, explained that the various inequalities faced by certain communities
“contribute to mistrust in health and social care services”
and that
“minority patients frequently express fear of having their lives shortened by healthcare providers, especially at the end-of-life with medication such as morphine and midazolam.”
In situations where patients are uncertain or lack trust in medical professionals, a record of the initial conversation is important to protect everyone involved. As Professor House stated, documenting the process and making records is common medical practice, so why would we differ here? We must protect patients and doctors, and making clear records at every stage of the process contributes to that.
Naz Shah
I rise to speak to amendments 288 and 295 tabled by my hon. Friend the Member for York Central (Rachael Maskell), both of which would improve the quality of records kept about people applying for assisted dying. Their aim is to make parliamentary and public scrutiny of the system easier and better. Amendment 288 would insert a new subsection at the end of clause 4, on page 2, line 36, reading:
“All efforts to dissuade the person from ending their own life must be recorded in the clinical records and subsequently made available to the medical examiner.”
That recognises that a doctor may follow existing guidelines and seek to dissuade the person from ending their life. It would ensure that such efforts are recorded to improve understanding of the Bill and its interaction with suicide prevention. As Professor Allan House noted in his written evidence, the National Institute for Health and Care Excellence guidelines apply
“in other areas where it is important to explore thoughts about life not being worth living”.
After an episode of self-harm or instances of suicidal thoughts, the medical professionals will explore
“current and recent personal and social circumstances, recent adversities, psychological state beyond merely assessing mental capacity and the presence of severe mental illness.”
In line with this suicide prevention strategy, a doctor may feel the need to explore those psychosocial factors and seek to dissuade the person from ending their life. We know that suicidal thoughts and depression are particularly common among terminally ill people. Dr Annabel Price, a member of the faculty of liaison psychiatry at the Royal College of Psychiatrists, gave oral evidence that among people who need palliative care at the end of their life,
“20% will have diagnosable depression, around 10% will have a wish to hasten death, and around 4% will have a more persistent wish to hasten death.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 270, Q351.]
She went on to say:
“Those who had a wish to hasten death were 18 times more likely to also feel suicidal”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275-276, Q359.]
Terminally ill people are therefore at particular risk, and it is vital that the Bill does not diminish wider suicide prevention strategies. The amendment would record instances where the medical practitioner may try to dissuade the person from ending their life. Some doctors may take the view of Professor Allan House, who said in his written evidence,
“a statement about wanting to end one's life cannot be simply taken as the result of a straightforward rational decision to choose one type of end of life care over others.”
Furthermore, this amendment would also address some of the concerns about unconscious bias. Recording efforts to dissuade the person from ending their life would show when doctors assume a person should have an assisted death where others should not. Fazilet Hadi of Disability Rights UK spoke about this in her oral evidence:
“We often find that doctors, because they cannot treat or cure us, do devalue our lives. We have had disabled people who have actually had it suggested to them or their families that their lives are expendable, when actually those people have got a lot of years to give.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 180, Q234.]
Providing records of a doctor’s efforts to dissuade the person from ending their life will address some of these concerns. It will ensure that there can be a more meaningful review of the impact of the Bill on different groups, so that the right to die does not become a duty to die.
In conclusion, amendment 288 would strengthen the safeguards in the Bill by ensuring transparency and accountability in doctor-patient discussions by requiring the documentation of efforts to dissuade individuals from ending their lives. We would lessen the impact of the Bill on wider suicide prevention strategies and provide evidence for meaningful review at a later date.
Amendment 295, also tabled by my hon. Friend the Member for York Central, is about enabling public and parliamentary scrutiny of the assisted dying system. It will ensure that, if the Bill passes, there are good records of all applications for assisted dying and that they are readily available to the medical examiner. Some Members will know exactly what the medical examiner does, but I note for the record that it is a newly created public office, in operation since 2024. The task of the medical examiner is to examine any deaths within the context of healthcare, whether NHS or private, that are not being examined by a coroner.
In light of the magnitude of the decision being made, it is important for records to reflect that. It is equally important that those who will depend on the evidence can access the same evidence on which the co-ordinating doctor made their determinations. Therefore, it is essential that the basis of the decision making is accurately recorded, along with the evidence from other practitioners. For instance, if a palliative care specialist, a clinical consultant and a psychiatrist or psychologist have been consulted, evidence of what they did and said must be readily available, and it is essential that that sits with the record of the co-ordinating doctor. The information must be gathered for the medical examiner to be able to come to their determination with all the evidence before them. It is also vital for the reporting mechanisms to be deployed for the process by which the chief medical officer compiles their report. That is ultimately what Parliament will be able to scrutinise.
Both these amendments would greatly improve the quality of records kept on assisted dying. If I recall correctly, the role of the medical examiner was brought into legislation following Shipman, to tidy up and tighten the records we keep—because clearly we had lessons to learn from them. Also, we have heard in evidence that some other jurisdictions keep good medical records, especially when that speaks to people who are potentially coerced. In one jurisdiction, we had somebody who said that they had never felt a burden, but there were many more who said that they had felt a burden.
There is no doubt that these services will continuously need improving. If we keep these records and understand that these conversations have been had then, ultimately, should this Bill become law, these records would form part of the data collection that we could rely on as parliamentarians and for those service improvements. The amendment speaks not just to the Bill itself, but to ensuring that it continues to do what it is intended to do going forward.
These amendments improve equality in assisted dying. That, in turn, will make it far easier for us in Parliament, for our constituents and for the media to find out what is happening with any assisted dying system. In this country, we believe in open justice and open Government. Assisted dying is much too important to be allowed to operate without strong scrutiny by the press, the public and ourselves in Parliament. I therefore urge hon. Members to vote for both these amendments.
Stephen Kinnock
This series of amendments relates to the various discussions and assessments that registered medical practitioners, co-ordinating doctors and independent doctors will have with individuals seeking assistance to end their life in accordance with the Bill. In particular, they seek to amend the requirement for recording information about those discussions. As I have done throughout, I will limit my remarks to comments on legal and practical impacts of amendments. In executing our duty to ensure that the legislation, if passed, is legally robust and workable, the Government have worked with the hon. Member for Spen Valley on amendments to the Bill, including new clause 19 in this group.
Amendment 345 would require the registered medical practitioner, following a preliminary discussion with a person, to record and document in that patient’s medical records the discussion and any information provided to the patient, and it would require them to provide a copy to the patient.
Amendment 288 adds an additional requirement on the registered medical practitioner who conducts an initial discussion with the person on the subject of an assisted death to record all efforts to dissuade a person from ending their own life in the person’s medical records, and subsequently to make those records available to the medical examiner. As drafted, it is not clear whether the wording “all efforts” is intended to include efforts made by the registered medical practitioner alone, or to include efforts made by others that could be reported to the registered medical practitioner. Further clarity would be needed to establish the practical implications of the amendment. The amendment does not require this information to be recorded at a specific time. I would also note that, operationally, medical examiners are not involved in scrutinising all deaths. Some deaths are investigated by coroners. Clause 29 will consider inquests and death certifications in relation to assisted death.
Amendment 297 requires a full written transcript to be produced for any consultations that occur as part of the first assessment undertaken by the co-ordinating doctor. That would potentially add some operability challenges and, if passed, we would want to explore those further. For example, there could be situations in which the person seeking assistance does not want there to be a written transcript. Further clarity is also required on whether the amendment intends to capture only consultations between the co-ordinating doctor and the patient, or whether it also intends to capture conversations with relevant persons other than the person seeking an assisted death.
I turn now to amendment 295. As the Bill stands, if, having carried out the first assessment, the co-ordinating doctor is satisfied that the person being assessed has met all requirements in clause 7(2), the co-ordinating doctor must:
“(a)make a statement to that effect in the form set out in Schedule 2, and sign and date it,
(b) provide the person who was assessed with a copy of the statement, and
(c) refer that person, as soon as practicable, to another registered medical practitioner who…is able and willing to carry out the second assessment”.
Amendment 295 seeks to add an additional requirement for the co-ordinating doctor to
“collate all evidence provided regarding the condition of the patient in a document to be provided to the Medical Examiner and the…Chief Medical Officer after the person has received assistance to die”
in accordance with the Bill. The aim of the amendment is to ensure that the documentation will be available when required by the medical examiner.
Naz Shah
The Minister referred to a patient not wanting to keep a written record. How does that fare if there is a potential issue of negligence later on? Is that not a requirement of every NHS service that we provide? For example, in the case of a kidney donation where an independent assessor was needed, the details would have to be kept. I am just a bit confused. I wonder if the Minister might comment on that.
Stephen Kinnock
The challenge we found with amendment 297 is that it is not entirely clear what would happen if the person were to say expressly that they did not want a written record. That eventuality is not baked into the Bill as it is currently drafted, so I think it would require a lot of thinking through—again, we are back to the law of unintended consequences—about the impact the amendment would have in certain circumstances if, for example, someone were to say expressly that they did not want a written record. That is the question: the impact of the amendment is not clear.
Naz Shah
If that is an issue, then it is my understanding, being new to Bill Committees, that it is not because the provision is poorly drafted, but because the outcome is not clear. Can the Government not clarify that on Report or Third Reading? I have heard nothing from the Government, even where they are supportive of amendments, about going away and looking at them. There is none of that conversation coming from the Government. Perhaps the Minister will comment on that.
Stephen Kinnock
As my hon. Friend knows, there will be an impact assessment on the Bill once it has cleared Committee. The Government’s impact assessment would be based on the Bill as it cleared Committee, so it would include the amendment we are discussing, if it were to pass. As things stand, I cannot tell her what the impact of the amendment would be in the event that it passed, because that has not been thought through from all the different angles, including if someone were to expressly say that they did not want a written transcript.
I turn to amendment 300, which would require a full written transcript of the second assessment as a record of the conversation. This goes further than the requirement that the Bill currently places on the independent doctor, which is to make a statement in the form in schedule 3. As with amendment 297, further clarity is required on whether the amendment is intended only to cover consultations with the patient, or whether conversations with other individuals should also be transcribed.
Amendment 302 would require the independent doctor to provide details of the way in which the second assessment was conducted alongside a written transcript of any consultation to the relevant chief medical officer and the person’s GP.
Naz Shah
The Minister is being very generous with his time. I want to understand the idea that someone might say that they do not want a written transcript, when everybody in our country who uses the NHS has a written medical record. Why, in this instance, are the Government of the view that we should stray from normal practice?
Stephen Kinnock
I think it reflects the fact that, as the Committee has agreed, we are in uncharted territory on a whole range of issues here. I think it is best to think through the implications of every amendment. If it passes, every clause of the Bill will have to be assessed for its potential impact. I have other questions about amendment 297 in my notes. Does it intend to capture only the consultations between the co-ordinating doctor and the patient, or does it intend also to capture conversations with relevant persons other than the person seeking an assisted death? That is not clear from the amendment. What I am saying is that it poses more questions than it answers.
Naz Shah
The Minister is being generous with his time. I am even more confused now. Originally, the Minister suggested that a patient might not want a transcript, but in response to the question from my hon. Friend the Member for Spen Valley, he mentioned that under new clause 19 people will have access to their written records. That appears to be a contradiction. I just want to nail this down. What will it be? If a patient does not want a written record, we would not have a written record to access, so that contradicts the Minister’s response. I want to understand exactly what the Minister is suggesting.
Stephen Kinnock
The Government have worked with my hon. Friend the Member for Spen Valley on new clause 19. The Government’s view is that if the Committee accepts it, then that new clause will provide the level of robustness and resilience that the system requires. The Government are not convinced that, on its own, the amendment that my hon. Friend the Member for Bradford West is talking about would provide the level of robustness and resilience we would be looking for. As things stand, the choice has been made to work with my hon. Friend the Member for Spen Valley on new clause 19, and we are satisfied that that would provide us with the operational integrity we need.
Amendment 302 would require the independent doctor to provide details of the way in which the second assessment was conducted, alongside a written transcript of any consultation to the relevant chief medical officer and the person’s GP. The independent doctor would be required to maintain a copy of that record to provide to the relevant medical examiner.
As I have mentioned, in executing our duty to ensure that the Bill, if passed, is legally robust and workable, the Government have worked with my hon. Friend the Member for Spen Valley on new clause 19. The new clause would require a practitioner to include a record of a preliminary discussion having taken place under clause 4. The record of the preliminary discussion must be included in the person’s medical records. Where the medical practitioner is a member of the person’s GP practice, they must make such a record in the person’s medical records as soon as practicable. Where the medical practitioner is not a member of the person’s GP practice, they must, as soon as practicable, provide a written record of the preliminary discussion to a medical practitioner at the person’s GP practice, who will then be required by the new clause to include it in the person’s medical records as soon as practicable.
The Committee may wish to note that amendment 424 would add a definition of “preliminary discussion” to the Bill that would make it clear what discussion medical practitioners would be required by law to record.
That concludes my remarks on this group. I thank the Committee for its attention.
Lewis Atkinson (Sunderland Central) (Lab)
I will be brief. I am pleased to hear my hon. Friend the Member for Spen Valley confirm that she is minded to support amendment 341. It is incumbent on all of us, but perhaps particularly those in favour of the Bill, to place on record our appreciation and recognition of the fact that many people who work in our health services have strongly held religious beliefs, or beliefs of conscience—however they are motivated. As is the case for a range of other procedures and medical interventions, the law has to allow them scope to continue to practise. They make a valuable contribution to our health service and national life, and we should not do anything to impinge on that.
There is already strong guidance from the General Medical Council about personal belief, and that applies, as the hon. Member for Reigate mentioned, to the Abortion Act, as well as to the Human Fertilisation and Embryology Act 1990, the Female Genital Mutilation Act 2003 and other procedures. It is not for any of us to second-guess someone’s conscience.
Lewis Atkinson
I do not disagree with my hon. Friend. I gently say that the GMC guidance specifically references that Act, so that is what I was referring to.
I am pleased to see amendment 341, which I believe would bring the legislation into line with that GMC guidance, ensuring that removing the duty to refer would absolutely not be a licence for people to be left without access to care. The GMC is very clear, as the hon. Member for Reigate said, that people must be given sufficient information and be empowered to seek the options and information that they need. Therefore, I am pleased to support the amendment.
Daniel Francis
It is a pleasure to serve under your chairmanship, Mr Dowd. I note that my hon. Friend the Member for Spen Valley has said that she is minded to accept amendment 341. I will, however, still briefly speak to amendment 338 and new clause 13, which stand in my name.
The British Medical Association has said that it strongly urges MPs to support the amendments, which would remove the referral requirement in relation to preliminary discussions and establish an official body to provide factual information to patients about the range of options available to them. As the hon. Member for East Wiltshire mentioned, Dr Green, in his oral evidence, said:
“The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q37.]
He went on to say:
“I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q40.]
He also said:
“The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q41.]
The BMA’s position is that the proposal is analogous to doctors’ professional legal obligations regarding abortion, and consistent with the Bill’s inclusion in clause 23 of a right to refuse, for any reason, to carry out activities directly related to assisted dying. It has said:
“In tandem, we believe creating an official body to provide individual information and advice to patients, to which doctors could direct (rather than refer) patients, would ensure that the doctor’s views are respected, whilst also—crucially—ensuring that patients can easily access the information and support they need. Currently, whilst the Bill acknowledges the need for accurate, impartial information and advice for patients, it gives no indication of how this might be delivered—generic published information would not be sufficient. Patients would need individual advice, guidance, and support so that they can make informed decisions, and an independent information service could meet this need.”
As the hon. Member for Reigate mentioned, a member of the Royal College of General Practitioners also said:
“The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 279, Q365.]
He went on to say:
“Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q354.]
Therefore, I commend amendment 338 and new clause 13 to the Committee.
Naz Shah
It is a pleasure to follow my hon. Friend the Member for Bexleyheath and Crayford. I rise to speak to amendment 287, tabled by my hon. Friend the Member for York Central. Clause 4(5) currently says:
“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner whom the first practitioner believes is willing and able to conduct that discussion.”
If this amendment was to be adopted, it would read:
“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner who is qualified to undertake such a preliminary discussion, and set out palliative medicine options to provide the patient with appropriate end of life care, including referring them to a palliative medicine expert.”
Put simply, the amendment would mean that if a doctor met with a patient with a severe illness who might die within six months, but the doctor was themselves unwilling to have an initial discussion on assisted dying, they would still have to refer the patient on to a doctor who was willing to have that discussion. The patient’s decision to explore assisted dying would not be obstructed; the main change would be that that doctor would now have to discuss palliative care options with the patient. That is surely a measure that would increase the patient’s welfare.
Let us think about the kind of patient who can apply for assisted dying. They must have a diagnosis of a serious illness and a prognosis that they are likely to die within six months. The Bill’s supporters have said many times that they are worried about any changes that will reduce the autonomy of people seeking assisted death. This amendment quite obviously does not in any way reduce people’s autonomy, nor does it in any way place an unreasonable burden upon doctors. If a patient has a diagnosis of a serious illness, and if they have themselves asked for a conversation on assisted dying, then it surely must be good practice for that doctor to discuss palliative care options.
It is also only good practice that one of those options would be for the doctor, if the patient wishes, to refer the patient to a palliative medicine specialist who is more able to talk about such options. That means that the amendment would not place any undue burden on either the doctor or the patient. The doctor ought to be offering such advice on palliative care. The patient may or may not decide to take the doctor’s advice on palliative care, but they have had it, and the patient may well benefit from having had advice on palliative care.
Given the conversations we had this morning, I can foretell one objection to this amendment: that since good doctors will do this anyway, it is unnecessary to have a provision on the face of the Bill to ensure it. This seems to me a very weak objection. Let us be honest, the doctors that we have in this country are of extremely high quality. They are dedicated, skilled and compassionate men and women. We are lucky to have them, but we cannot say that every doctor participating in all the processes that they currently undertake always follow best practice.
Similarly, we simply cannot say that in any assisted dying process doctors will always automatically follow best practice. People make mistakes. That includes people who are highly trained and extremely compassionate. I would be astonished if we could find a doctor who said they had always got everything right. As lawmakers, we have to guard against the fact that even some of our most admired professionals can and sometimes will make mistakes. One way that we will guard against that is to set out duties that they have to follow. This amendment does just that.
I hope that we will not hear the objection that we have heard to a great many good amendments: that it will somehow make the Bill more dangerous by adding complications. The amendment simply adds a small step, by placing a duty on a doctor to give palliative care advice to a patient with a diagnosis of serious illness. Surely the Bill cannot be so lacking in robustness that such a small change would make it dangerous.
In summary, the amendment is a sensible change. It would in no way block the ability of adults who meet the conditions set out by this Bill to explore assisted dying, nor would it place any burden at all upon doctors. It would simply place upon them a duty to follow what we can all surely agree is best practice, and it would greatly improve the early access to palliative care advice for patients with a diagnosis of serious illness. That would improve those patients’ chances of receiving good palliative care. I therefore urge hon. Members to support the amendment.
Kit Malthouse
I understand that, but amendment 126 also refers to a register of appropriate medical practitioners being maintained. Of course, new clause 7 would similarly create such a list. We are debating all three proposals, so I wanted to explain why I oppose them, as indeed the BMA does.
As has been outlined in previous speeches, the Bill creates an opt-in model effectively, whereby people who want to be the co-ordinating doctor or indeed the second doctor have to opt in and be trained, and therefore become accredited, so by definition they would be approved for that service.
However, the Bill does not envisage that the initial conversation is necessarily with the co-ordinating doctor. There might well be other medical personnel or practitioners—we have talked a lot about semantics in this debate—who are presented with the situation where a desperate person, somebody who has been given some extremely bad news, wants to talk about their situation and what their options might be. We hope and believe that training will spread throughout the NHS to those who want it. Nevertheless, we have to leave open the option that someone may not be accredited and that they may need to pass on someone, by whatever means the Bill determines, to a doctor who is accredited, who can act as the co-ordinating doctor, who has had the appropriate training and opted in, and I am afraid the register would not allow for that.
The second thing that concerns me slightly, and which we need to avoid for the benefit of both the patient and the system, is any kind of “doctor shopping”—the notion that there is a list of doctors that I can shop around and choose from. I worry slightly about that.
My hope is that these types of conversations, which are necessarily private and sensitive, will take place in an environment of embrace and familiarity between doctor and patient. We have talked a bit about whether doctors have to refer or provide information—obviously, we have just accepted an amendment that seeks to set out how that will work. What I would oppose, for two reasons, is the creation of a list that people can move up and down on, and pick somebody they like the look of, or who they think might be handy for them. First, I am not sure that it would be entirely reputable; secondly, we have to remember who we are dealing with here. These are dying people who may not have long left to live—we are talking about six months as a minimum, but actually they might have only two or three months to go. We need to create a sense that this is something that will be provided to them in an environment that is familiar. They will not have to spend their time finding a doctor on a list, and their phone number, then ringing up their office and saying, “This is what I want to do. Can I make an appointment?” There is a privacy aspect to it.
My third objection is, to be honest, about privacy—not just that of the patient, but that of the doctor. The hon. Lady will know that unfortunately—I do not know whether she thinks it is unfortunate, but I do—there are some people who object so strongly, for example, to abortion that they are willing to go and protest outside clinics that provide that service. This House has legislated to balance the rights of those who want to avail themselves of that service and those who want to protest. That has been a source of conflict.
I am afraid that a public list of doctors who provide this service would raise questions about the privacy of doctors, about patient privacy and about access to that service. I am concerned about it from that point of view.
Kit Malthouse
We do not necessarily have specific registers. People are members of professional bodies, and within those professional bodies, people become accredited because of their training. As the Minister referred to earlier, there is no such thing as a list of palliative care specialists; it is not defined in that way. Creating a list in this way would present problems for the privacy of doctor and patient as they go about what I hope we all acknowledge is a very sensitive and private process at the very end of someone’s life. I will conclude at that point and say that, unfortunately, with great respect to the hon. Member for Broxtowe, I oppose these amendments.
Naz Shah
I rise briefly to put on the record my disappointment. In our debates today on various amendments, we have discussed how some patients could see doctors’ language as a suggestion rather than an option. I make no apologies for the fact that I said that this could be the next Horizon scandal or the next infected blood scandal. I struggle with that.
A chap called Nick Wallis, who exposed the Horizon scandal, said something pertinent that I want to put on the record. He said that the difference is that there will not be anybody else left to campaign—
The Chair
Order. I am genuinely trying to provide as much latitude as possible, but the Question before the Committee is whether the clause stands part of the Bill.
The Chair
I apologise to the Member, who was within his rights to speak to amendments 403 and 404.
Naz Shah
I rise to speak to my amendment 277, which would add a new subsection to clause 5. Like my amendment 276, it would alter the time that must elapse between a person receiving a diagnosis of severe illness and their discussion of assisted dying with a medical practitioner. To put the most important point first, the amendment aims to prevent people opting for assisted dying while they are suffering from the initial shock of having a serious illness diagnosed, by imposing a pause. There would have to be 28 days between when a person receives a diagnosis and prognosis of the illness that might end their life within six months, and when they could have their second consultation with a doctor about assisted dying.
The right hon. Member for North West Hampshire asked me whether I was aware of pancreatic cancer. A dear friend of mine, who was known as the “king of curry” in Bradford, told me only in June—the day I launched my election campaign, funnily enough—that he had been diagnosed with terminal cancer. In October, he was gone. I am overly familiar with pancreatic cancer and how fast he went down from being a healthy individual. He is greatly missed in Bradford.
The Committee has already rejected amendment 276. I ask all Members to think again and in particular to consider the evidence given to us by several distinguished doctors, including senior psychiatrists. What those doctors said to us, in both written and spoken evidence, was that immediately after someone receives a diagnosis of serious illness they often experience a major increase in depression and a desire to hasten death. For some patients, that desire to hasten death is what psychiatrists call an increase in suicidality; that is, the patient wants to actively do something to end their own life. For other patients, they do not have an active desire to carry out a physical act to end their life, but they do wish that their life would end sooner.
We can all empathise with people who have just received such a shocking diagnosis and prognosis. They have been told that they are likely to die soon. They may also either have been given information that makes them think their remaining months of life will be degrading and painful, or they may assume that they will be. That might well be how many of us would think if we had such devastating news. But the psychiatrists who gave evidence also said that depression and a desire for death are often not permanent conditions for people who have received such a diagnosis. When a patient gets treatment for their physical symptoms plus social care, and if necessary psychological treatment, the desire to hasten death will often fall.
Let me refer to the evidence of Dr Annabel Price, vice chair of the Royal College of Psychiatrists Liaison Faculty. I appreciate, Mr Dowd, that I am repeating some things I have mentioned previously, but when I spoke previously with reference to this evidence it was to other amendments. Hence, I am having to repeat it for the purpose of this amendment in particular. She said:
“There is a lot of research evidence around depression in people with palliative care needs and people nearing the end of life. We know that depression is common, and across a number of studies it is at around 20%—much more common than in the general population. We know that depression is strongly associated with a wish to hasten death, and that if depression is found and treated in that group of patients, there will be significant change in the wish to hasten death.”
She said that there were a number of factors besides depression that were associated with the wish to hasten death. In those who had received a diagnosis of serious illness, she told us:
“they include difficult symptom experience, poor functional status—needing a lot of help with things—and being socially isolated. Those are really key ones. They also include a sense of loss of dignity and feeling like a burden on others.”
For patients who have all those factors, she said:
“These things can all come together to make life feel very unbearable.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275, Q359.]
Perhaps the most important part of Dr Price’s evidence was when she said what good medical and social care could do for people who felt their lives were unbearable. She said:
“The evidence that we have from research—this is in populations who would fulfil the criteria in terms of terminal illness—is that the prevalence of depression is around 20%. That is across a number of populations. It is associated with a wish to hasten death. Depression might impact upon that person’s decision making; I am not saying that it absolutely would, but it might. Also, treatment might change their view. We know that there is a strong association, for example, between pain and a wish to hasten death.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 281, Q369.]
Kit Malthouse
On a point of order, Mr Dowd. I am very sorry, but I just want your guidance. The hon. Lady is giving a speech which I am afraid we have covered before. We have had extensive debates on the impact of terminal diagnosis on people’s mental health and depression. I just want your guidance on what the Committee should do to resist the temptation to repeat debates that we have already had extensively, while we are considering these amendments.
The Chair
I thank the right hon. Gentleman for that point of order. I reiterate the point I have made on a number of occasions. I do not want to interrupt Members when they are making a point, because we are in a very sensitive situation—of that there is no doubt. I exhort Members, when they are discussing these things, to bear in mind those factors and those issues.
Naz Shah
Thank you, Mr Dowd. Before I carry on, may I just add to that? I did refer to that and I appreciate the right hon. Gentleman’s point of order, but these things speak to this particular amendment on 28 days. While they speak to many other debates, the Committee will have no doubt that there are many issues in which one piece of evidence crosses over many amendments. I assure the Committee that my intention is just to draw attention to the evidence that is related to the particular amendment that I am speaking to. I appreciate there that there is huge repetition—for want of a better word—but I feel that it is necessary, unless advised otherwise. I would be happy to take your guidance, Mr Dowd.
Terminally Ill Adults (End of Life) Bill (Thirteenth sitting)
Naz Shah ExcerptsTuesday 25th February 2025
(1 month, 1 week ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 25 February 2025 - (25 Feb 2025)
Naz Shah (Bradford West) (Lab)
Before we adjourned, I was talking about the two obvious problems with amendment 181. The first is that it would remove references to the Equality Act 2010 and the Mental Health Act 1983, which previously defined who did or did not have a disability or mental disorder. The amendment would remove those definitions, and the Bill would not define disability or mental disorder. What definition would medical practitioners, and indeed applicants, use to determine who does and does not have a disability or mental health disorder?
I appreciate that, as my hon. Friend the Member for Spen Valley explained, that was done on the basis of advice she took to remove the references to the Equality Act because people with cancer could also declare themselves to be disabled people. However, that leaves a real opening, which weakens the clause even further. I cannot understand why we would remove one clear definition but not provide a replacement. That is a serious concern.
However, there is a bigger problem with the clause as it would be changed by my hon. Friend’s amendment. In referring to someone who could not be disqualified from assisted dying, the clause would still use the word “only”—again, I emphasise the word “only”. That leaves the door open for individuals with mental health disorders or disabled people to qualify for an assisted death based on the physical consequences of their condition. If the goal is to prevent people with mental illness or disabled people from qualifying, this amendment fails to do that. It weakens, rather than strengthens, the Bill’s safeguards.
As we heard in oral evidence, there are now 60 documented cases of individuals with eating disorders who have died by assisted death internationally.
Lewis Atkinson (Sunderland Central) (Lab)
Does my hon. Friend accept that nearly all those cases were in jurisdictions whose schemes bear no resemblance to the one proposed in the Bill?
Naz Shah
I accept that the majority of those 60 cases are in such jurisdictions, but to me it does not matter whether it is the majority or one—one death is too many, as I am sure my hon. Friend will agree. In Oregon, the evidence was that it was two, but it is also important to reflect on the fact that Oregon does not record these things. There is no record of the people who had anorexia—by and large, it is women—and who felt that they fit the criteria for assisted death, or that they were on a trajectory to fit it, because they had decided not to eat. So we cannot exactly rely on the two cases that have been found—and those were found only because of the research that was carried out. That does not quite satisfy the question.
Sarah Olney (Richmond Park) (LD)
Does the hon. Lady agree that it really does not matter what happens in other jurisdictions? The question is, does this legislation prevent people who are currently suffering from anorexia from seeking an assisted death or not?
Naz Shah
I completely agree with the hon. Member.
Coming back to the physicians who justified eligibility by citing the physical complications of anorexia, not just the mental disorder itself, we know that in all 60 of the cases that have been cited, the person did not have a terminal illness other than the one that was caused by anorexia, because that then fit the definition. Under the Bill, the same could happen here. I say in response to the hon. Member for Richmond Park that eating disorders or substance use disorders could still qualify if a doctor determines that the resulting physical deterioration meets the criteria for terminal illness. I will speak to anorexia in much more detail when we debate a further amendment that I have tabled.
Amendment 181 would also remove references to the Equality Act and the Mental Health Act, and the Bill would not define disability or mental disorder. That raises serious concerns, so I will not support the amendment. I encourage Committee members to strengthen the Bill in this regard and not weaken it. The Acts define mental illness and disability as taking a clear medical model, and again it is not clear whether my hon. Friend the Member for Spen Valley is further suggesting that a new definition should be used—but I am going over ground that I have already been over.
Daniel Francis (Bexleyheath and Crayford) (Lab)
The amendments before us have left me in a significant quandary, as some Members are aware. I am concerned that while their proposers are genuinely seeking to improve the Bill, legal loopholes may remain.
Prior to Second Reading, the Equality and Human Rights Commission produced a briefing note on the Bill. It included a section relating specifically to discrimination and equality considerations, which stated:
“It may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability. Parliament should note that the exclusion of disability as a standalone criterion for accessing assisted dying does not mean that the rights of, and protections for, disabled people do not need to be considered in relation to this bill.”
I note that amendment 181, tabled by my hon. Friend the Member for Spen Valley, seeks to clarify these matters, but I remain concerned that, with its reference to
“only because they are a person with a disability”,
it would retain the ambiguity that she is seeking to remove. I understand the legal advice that she has received on this matter. My view is that although the amendment would remove the reference to the Equality Act, that Act still sets out that disability is one of the specified protected characteristics. Paragraph A9 of the Government’s guidance on the Equality Act reads:
“The Act states that a person who has cancer, HIV infection or multiple sclerosis (MS) is a disabled person. This means that the person is protected by the Act effectively from the point of diagnosis.”
I remain concerned about this point. I have previously raised my concerns about the language used on Second Reading and, if I had spoken then, I would have raised this point. We have heard throughout the Bill’s passage that being a disabled person does not make someone eligible for assisted dying, but I have just diagnosed three disabilities in the Equality Act that may or may not be eligible under this Bill.
Naz Shah
My hon. Friend is making her points very clearly. The last words of amendment 181 are:
“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).”
Does that not demonstrate that the amendment does not change the test for terminal illness?
Kim Leadbeater
My apologies; I am speaking to amendments 399, 400 and 401. I will be happy to come back to that point at the appropriate time, but I first want to finish my comments on those amendments.
As I have said, the hon. Member for East Wiltshire has done a good job this morning of improving the clarity of the issue. That shows that the Committee is doing its job and working effectively. I am therefore open to supporting those amendments.
Rebecca Paul
I am sharing the content of written evidence. People working in this arena—medical professionals and clinicians—have taken the time to submit written evidence, which suggests that they see a risk, so this is something that we need to think about. The hon. Gentleman could be right when he asks why someone would seek assisted death in that situation, but it is more about if someone technically qualifies. Obviously, we are still yet to get through the Bill, and there is lots for us to debate, but we want to ensure that people are not put on that pathway if they are not actually terminally ill and their condition can be managed. People could be in a low place, and we need to provide support. This comes back to my point about the balance of best interests. It is really difficult to set the right level, but we need to think about best interests and protect people at their lowest point.
In Oregon, conditions such as anorexia, diabetes, arthritis and hernias have qualified for assisted death, not because they are inherently fatal but because treatment was refused or was unaffordable. We also need to think about situations such as supply chain issues with certain treatments. Situations that we do not want to happen could arise, and we need to think about what that means for this Bill.
Some lawyers and doctors in the US have advised patients on how to bypass the terminal illness criteria by refusing food and water until they become terminal—we have talked about that quite a lot today. There is some evidence of that happening. Cody Sontag, an Oregon woman with early-stage dementia, had few symptoms and was not eligible for assisted death, but after she refused food and water for a few days, her doctor ruled that she met the six-month prognosis requirement.
It is important that we carefully consider young women suffering with eating disorders, but I appreciate we have spoken about that group a lot today, so I will be brief. In Chelsea Roff’s evidence, she set out that at least 60 people around the world have been euthanised or assisted in suicide where anorexia nervosa has been listed by name as a terminal condition. In 100% of the cases, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. Roff said,
“I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions…they had decades of life ahead of them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 139, Q175.]
UK courts have already ruled that treatment can be withdrawn from young women with anorexia, acknowledging that the likely result will be their death, after doctors framed their condition as terminal or untreatable. These examples powerfully demonstrate why it is vital these amendments are accepted, so that these conditions do not lead to a person qualifying for assisted death, if they can be managed sufficiently with treatment. In oral evidence, Dr Miro Griffiths asked us,
“What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 142-143, Q179.]
In written evidence, Pathfinders Neuromuscular Alliance warned that for those with conditions like muscular dystrophy, access to treatment is essential. It said,
“It would not be unreasonable therefore to suggest an individual with neuromuscular respiratory failure could die within six months—and yet they might also live 20 to 30 additional years in this state.”
In written evidence, a group of leading physicians and researchers, including experts from John Hopkins University and the Royal College of Psychiatrists said,
“The Bill’s definition of terminal may not adequately distinguish between a condition that is inevitably fatal and one that only becomes terminal without adequate care.”
They added,
“Under this Bill, patients with incurable but treatable conditions could become terminal if they are unable to access timely treatment or choose to forego life-sustaining care.”
It is therefore vital that the definition of terminal illness is tightened to avoid unintended consequences. These amendments would ensure that the Bill applies only to those who are generally at the end of life, without prospect of recovery. I urge the Committee to give consideration to accepting them.
Naz Shah
First, I will speak to amendments 9 and 10, then to amendment 234, and then to my own amendments 48 and 402. I hope it is in order to note that the hon. Member for South Northamptonshire (Sarah Bool), as the hon. Member for Reigate already mentioned, is a type 1 diabetes sufferer. Amendments 9 and 10 both concern matters of which she has a personal understanding.
Amendment 9 would mean that an illness, disease or medical condition, the progress of which can be managed or controlled by treatment, would not be characterised as a terminal illness. The amendment provides that instead of saying that the illness cannot be “reversed” by treatment, the Bill should say that its progress cannot be “controlled or substantially slowed”. The amendment is clearly a most important one. It seeks to prevent illnesses that can, in fact, be treated effectively from being classified as terminal illnesses.
The amendment would work to mitigate two very serious risks posed by the Bill. First, it would make it more difficult for someone who, for whatever reason, wished for an assisted death to qualify for that process by failing to follow a reasonable course of treatment. I do not say that the amendment would make it impossible for anyone not to do so, but it is an important safeguard. It would also provide a safeguard against the expansion of those conditions that would qualify people for assisted death.
My hon. Friend the Member for Spen Valley and members of the Committee have repeatedly praised the Oregon law, but we surely do not want to follow that example in every way, since we know that in Oregon, sufferers of anorexia have been able to access assisted dying. Again, I do not say that the amendment would make it impossible to expand the list of conditions, but it would make it harder. My hon. Friend has said repeatedly that she wants the Bill to have the strongest safeguards of any assisted dying law in the world, so I hope that she will join me in voting for amendment 9.
Naz Shah
I agree very strongly with the sentiments expressed by my hon. Friends the Members for Spen Valley and for Penistone and Stocksbridge, and I hope that the Committee can later return to the state of palliative care in this country.
I underline that the matter of the six-month prognosis was not some minor detail on Second Reading; rather, it was a central plank of the arguments made by those who said that we should pass the Bill because its safeguards were the toughest of any assisted dying law in the world. It is less than three months since my hon. Friends spoke those words, and yet we are already discussing an amendment that would remove the six-month prognosis.
Kim Leadbeater
We need to be fair to the hon. Member for Harrogate and Knaresborough, who has said that he will not press the amendment to a Division. Indeed, it would not be something that I would support if he did do so, for the reasons that my hon. Friend has stated. I also think that we need to give him credit for ensuring that the voices of people with neurodegenerative conditions, such as MND, Parkinson’s and Huntingdon’s, are heard. They are an important part of this debate, whatever our views might be on the tightness that is needed in the Bill.
Naz Shah
I thank my hon. Friend, and my hon. Friend the Member for Penistone and Stocksbridge, for making it clear that they would not vote for the amendment. I also thank the hon. Member for Harrogate and Knaresborough for bringing forward an amendment that discusses those issues. However, whether it is withdrawn or not, it is an amendment that we are debating and talking to.
The hon. Member for Harrogate and Knaresborough, who tabled the amendment, no doubt feels very strongly that the conditions of patients with neurodegenerative diseases make a case for relaxing the six-month prognosis to 12. There may well be a good case for doing so, but we can only consider the case for extending the prognosis to 12 months because of the challenges created by neurodegenerative diseases if we have first considered that extremely complex subject.
We cannot say that the Committee has studied the difficult subject of neurodegenerative diseases and how they would affect the administration of the Bill. We have not heard from witnesses on the subject, and we have not been able to ask them questions. We did solicit evidence on whether neurodegenerative diseases would affect the ability to self-administer lethal drugs, but we have not had time to study the written evidence.
I appreciate that the hon. Member for Harrogate and Knaresborough is not going to press the amendment to a Division, which leaves some of what I wrote earlier obsolete. I appreciate the hon. Member’s efforts. We are sent here by our constituents to represent them to the best of our ability. I certainly try to do that, and I know my hon. Friend the Member for Spen Valley always tries to do that—I have no doubt that the hon. Member for Harrogate and Knaresborough and all others are trying to do that. We vow to represent our constituents, and had the amendment gone to a Division I would not have been able to support it, simply because we cannot make those difficult decisions without being properly informed. We cannot make up our minds to change the Bill because of a complex set of diseases.
Jack Abbott
Just as a point of clarification, I remember asking one of the witnesses at our oral evidence sessions about this very issue—Sir Nicholas Mostyn, an esteemed judge who has written and spoken about the issue extensively. We asked his views about neurodegenerative diseases and extending the time to 12 months, so it was something that we were aware of and discussed as a Committee. In fairness to the hon. Member for Harrogate and Knaresborough, it has not come completely out of the blue.
Naz Shah
I agree that we did hear that, but we did not hear from experts in the Bill, and at that point it was not discussed. While I acknowledge my hon. Friend’s point that we did speak to Sir Nicholas Mostyn, we did not have further evidence, and this measure was not in the Bill when we took evidence from those witnesses.
Tom Gordon
I find this a little bit baffling, because we had a comprehensive list of witnesses that we were able to circulate in advance. The format in which those oral evidence sessions were held was really helpful and informative. We were able to ask questions, and as the hon. Member for Ipswich mentioned, we were interacting with people and families. We heard from Pat, who gave oral evidence about his sister who had to go to Dignitas. Again, it was not just a small figure; a number of people brought this issue up. Could the hon. Member reflect on that?
Naz Shah
The crux for me is that at Second Reading, when the Bill was voted on, many Members cited that one of the central planks to that debate at the time was the six-month prognosis. The amendment would increase that to 12 months. As I have said, my concerns are that we are only three months on from that conversation and we are already trying to expand the Bill, which is why I would not support the amendment. I have said quite a bit on amendment 234, so I will leave it.
I will now speak to amendment 48, which I tabled. Under the current wording of the Bill, a person is terminally ill if their death
“can reasonably be expected within 6 months.”
My amendment would change that so that for a person to be considered terminally ill their death would have to be
“expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”.
One of the risks that confronts the Bill is that of misdiagnosis. That is not some remote possibility. Let me go into detail. As hon. Members know from the evidence brought before the Committee, prognosis is not a precise science. Even with physical illnesses, determining life expectancy is highly unreliable. Government data from the Department for Work and Pensions reveals that one in five people given six months to live are still alive after three years. A study spanning 16 years found that doctors wrongly predict how long terminally ill patients will survive in half of cases. Out of 6,495 patients who were predicted to die within six to 12 months, more than half—3,516, to be precise—lived longer than expected. If the Government themselves cannot accurately determine terminal illness for benefits, how can we rely on such predictions to justify ending lives?
Studies cited in written evidence submitted to the Committee have found that clinicians are routinely inconsistent and inaccurate in their prognostic assessments, often underestimating survival. Professor Katherine Sleeman, a palliative care specialist, underlined that point in her evidence to the Committee. Doctors face considerable difficulty in prognosing whether somebody is in the last six months of their life. Professor Sleeman cites studies based on large samples of patients for whom doctors prognosed life expectancy. The studies found that 47% of the patients whom they predicted to have six months to live in fact lived for longer than that—in some cases considerably longer.
I would argue that there is a danger in using the standard of prognosis currently in the Bill. The current research into doctors’ prognoses indicates that almost half of their estimates that a patient has six months to live are incorrect. We do not want people to choose assisted dying on the basis that they have only six months to live when a very high proportion of them will in fact live longer if they are not given assistance to die by taking a lethal drug or drugs.
My amendment would hold doctors to a higher standard of certainty. Under that measure, they would be explicitly held to prognosing that death would occur with “reasonable certainty” within six months, and that that would be true even if the patient underwent all recommended treatment.
Sean Woodcock (Banbury) (Lab)
I think we all accept that prognosis is quite difficult, but one reason why I think this is fundamentally important is that a member of my constituency Labour party was given a prognosis of 12 months in 2012. Last year, they were out delivering leaflets for me in the general election. That is why it is so important that we make sure we get this right. I am sure that my hon. Friend has examples of her own. Is that what is guiding her to press this amendment?
Naz Shah
It is absolutely what is guiding me. I am sure we all know people who were told that they had six months to live and have lived a lot longer. We have heard stories of people who were told that they had six months to live and lived beyond 20 years more. We have heard lots of tragic cases, for example in the world of Dr Jamilla Hussain, that would really benefit from the Bill’s being available to them. But equally, there are other families whose loved ones have survived—and not just survived, but thrived for years and years. In fact, a close friend of mine, who happens to be a constituent of my hon. Friend the Member for Spen Valley, was diagnosed not to live very long. It was an emotional time for her daughters. Eighteen and a half years later, she is still alive, well and thriving.
Naz Shah
I thank my hon. Friend for his intervention. Actually, there is nothing in the Bill that suggests that. We can only imagine and try to empathise as much as we possibly can with any person who has been given a diagnosis of six months to live. In that six-month process, they might not wait; as my hon. Friend, who is a doctor himself, has said, this is about autonomy. They might not wait until they get to a position where there is a lot of suffering; they might not wait to see those six months out. They might decide they do not want to take that risk, when actually they might have lived another 15 years, another year or another two years. That is the point of this amendment.
Kim Leadbeater
My hon. Friend is making a powerful speech and it is good to have this debate. May I ask her opinion on two things? One is that, as my hon. Friend the Member for Stroud has alluded to, the research around the world shows that between 30% and 40% of people who sign up for assisted death never actually do it, because they do get better or because the treatment makes their condition manageable—or because they have a death in a different way. What are her thoughts on that? The other thing to point out is the number of people who we know, sadly, are taking their own lives because they are terminally ill at the moment. I go back to the point that I make quite regularly: no one is monitoring that—
The Chair
Order. As I said before, these are interventions seeking clarification. They are not mini-speeches.
Kim Leadbeater
Just to clarify, my understanding is that it is between 600 and 700 people who take their own lives; it is suicide.
Naz Shah
If we take that number, then that 30% or 40% who do not take that decision is maybe a few hundred people. However, the truth from Professor Sleeman’s evidence is that we are talking about thousands of people who are misdiagnosed every single year. She was talking about 3,516 who lived longer than expected. Yes, I recognise and value my hon. Friend’s comment that 30% or 40% of people do not take up assisted dying, but—perhaps I will talk about this when I move on to the next amendment—there is also a risk. If we go back to the Bill promoter’s intention to make the wording tighter, then surely this is a safeguard that she would support, just to ensure that we are making it as tight as we possibly can.
Jake Richards (Rother Valley) (Lab)
Can my hon. Friend clarify for me what she means by “reasonable certainty”, and how that differs from the clause as drafted? Can she also explain why, in her amendments, normal language around the burden of proof, such as “on the balance of probabilities” or “beyond reasonable doubt” is not used?
Naz Shah
First, this is not an issue for a tribunal, where it would be on the balance of probabilities; it is not an issue for a court of law or a criminal court, where we would be using proof beyond reasonable doubt. What I am trying to demonstrate is that doctors, in those diagnoses where they do get it right, have much more certainty. It might be that people have six months to live because they have different types of cancer. I am certainly not a clinician or an oncologist, but I know from the evidence we have had and from speaking to people that some people’s diseases—the specialists know better—have a trajectory of plateauing out and then dropping right at the end and some have a jagged kind of decline. Some of those diseases can be predicted with much more clarity than others. On the surface of it, in September, it might be the case for somebody that that is within the time—as for one lady who was told that she would not have more than six months to live. She is the founder of the Music of Black Origin awards and I was with her last week. She was absolutely fighting; she was not supposed to make it to that day. It is for the medics to decide—it is not for me to decide—but I would like medics to have much more certainty than they currently do, so that we would not have 47% of cases being misdiagnosed. That is what I am trying to get to, but I thank my hon. Friend for his intervention.
I argue that there is still a danger of using the standard prognosis that is currently in the Bill. The current research into doctors’ prognoses indicates that about half of their estimates are incorrect. My amendment would hold doctors to a higher standard of certainty. Under the measure, they would be explicitly held to a prognosis that death would occur with reasonable certainty within six months, and that that would have to be true even if the patient underwent all recommended treatment.
To go back to my hon. Friend’s intervention, this amendment is about raising the bar for how our medics make decisions. I submit that it would be a stronger test than the one currently included in the Bill. My hon. Friend the Member for Spen Valley has frequently stated that she wishes to create a Bill with the toughest safeguards in the world. I keep coming back to that, because the whole purpose of speaking to all these amendments is to put in opportunities to try to strengthen the Bill. By their nature, all these amendments reflect hon. Members’ concerns. This amendment would tighten the prognostic standard required of doctors and would therefore contribute towards tightening the Bill’s safeguards. I hope that hon. Members support it.
Finally, I turn to amendment 402. I will repeat a lot about anorexia, but it is an important amendment. I have tabled it for a simple but extremely important purpose: to prevent people from qualifying for assisted dying by stopping eating and drinking to the degree that they develop severe malnutrition, such that a doctor would give them a prognosis of six months to live. It specifically aims to protect people with severe eating disorders, including anorexia nervosa, and would also protect people with a severe wish, as one of the psychiatrists who testified before the Committee put it, to “hasten death”. I hope that my hon. Friend the Member for Spen Valley, and all other Committee members, will support this amendment.
Let us make no mistake: the Bill, as currently drafted, has a horrible loophole that all of us should seek to close. We know that anorexia sufferers and other people with eating disorders can and do stop eating to the point where they are dying of malnutrition. We should not allow such people to qualify for assisted death. Unfortunately, that is not a hypothetical danger; it is happening.
We know from the evidence that the Committee has received that that has happened in other countries. A group of eight experts on eating disorders submitted written evidence TIAB54 to the Committee some weeks ago. The experts included Chelsea Roff, who has been referred to many times in this Committee, and who gave clear testimony before the Committee, as well as seven medical doctors from hospitals in the UK, the US and Canada.
I hope that all Committee members have read the evidence, but I would understand if they had not, because we have had nearly 400 pieces of evidence to go through and very little time to read it. It seems to me, however, that if we are trying to write the best possible Bill, with the strongest possible safeguards, we have to pay the written evidence of experts the attention that it deserves. In their written evidence, that group of experts said:
“Patients with severe eating disorders frequently experience profound psychological distress and may express a desire to die. While this may appear to reflect a clear and informed wish, it is often a symptom of their psychiatric condition, which is remediable with appropriate treatment.”
The experts found that at least 60 patients with eating disorders received assisted death in several jurisdictions worldwide, including the US, Canada, the Netherlands and Belgium. I stress the phrase “at least 60” because we cannot be entirely sure that that is the full total. It is sadly the case that some jurisdictions are much more painstaking and transparent in the data they publish on assisted death than others.
In itself, it is tragic that people died in that way, but two things surely make the fact even worse. There are certainly men with eating disorders, but this is a problem that disproportionately affects women and girls. We know that the incidence of anorexia nervosa is much higher among women than among men in every age group. That is tragic. In every case we know of where a person with an eating disorder received an assisted death, that person has been a woman. I say it again: we cannot allow the Bill, as currently written, to stand. The Labour Government was elected with a mandate to reduce violence against women and girls. We surely cannot pursue that goal while at the same time increasing the vulnerability of women and girls who have eating disorders. There is nothing in the Bill as it currently stands that would stop doctors signing off on assisted death for someone who had starved themselves into malnutrition.
The courts in England and Wales have already begun accepting that some people with anorexia have reached a terminal stage. In the Court of Protection case, The NHS Trust v. L & Others, which took place in 2012, a 29-year-old with severe anorexia was described in the ruling as follows:
“The prospects of her recovery overall approach zero…given that it is extremely unlikely that Ms L will recover from her anorexia…in best interests to move to palliative care if L…in terminal stage of her illness.”
The right hon. Member for North West Hampshire raised the Court of Protection. There are 10 cases where the Court of Protection has made rulings. Of them, only one case, in 2012, ruled that the young lady could be force-fed.
Kit Malthouse
My understanding is that it is the other way around. In all but one case, force-feeding was decided by the courts. In the case the hon. Lady is referring to, L, the court did wrestle over that particular issue and realised that, such was the advanced stage of the patient’s condition and the complexities of force-feeding, it could not quite bring itself to authorise it. My understanding is that in all bar one case force-feeding has been authorised.
Naz Shah
Actually, it was the other way around and I am happy to provide a reference to the right hon. Gentleman. Nine cases found lack of capacity, but still not in the best interest. One of the girls was 19 years old. The judge found that they lacked capacity to make decisions about their treatment. The question of whether they had the capacity to decide to end their life is completely different and not something we have asked judges to rule on before. The judge’s ruling clearly implied the capacity to refuse force-feeding even if it resulted in their death. I am happy to provide the references for that. It was against their best interest to force-feed them. Tragically, in nine of the 10 cases the judges accepted that that would inevitably lead to the deaths of those young girls.
My hon. Friend the Member for Spen Valley has repeatedly stressed that her Bill is modelled on the Death with Dignity law in Oregon.
The Chair
Order. With the greatest respect to Members, this is not a dialogue; this is a debate. This is not chit-chat. It is a very serious issue and interventions of that nature are not helpful.
The Chair
That is ultimately a matter of opinion. If the hon. Lady wishes to ask the hon. Member for Bradford West a question and get clarity from her, that is fine, but this is becoming a dialogue. People cannot hear what is being said. I want the Committee to be run in an appropriate fashion. We have rules of debate in the House and I am trying to apply them. Otherwise, there lies perdition and chaos.
Naz Shah
I am happy to withdraw that comment, given the welcome intervention of my hon. Friend the Member for Spen Valley. When intervening on me in a previous sitting of the Committee, she stressed that most of the assisted deaths of people with eating disorders took place in the Netherlands and Belgium. The survey that Ms Roff and her colleagues carried out did find that the Netherlands and Belgium had more assisted deaths of people with eating disorders than Oregon, but it also found that Oregon itself had more than one such case. California and Colorado have also accepted people with eating disorders as subjects for assisted death. I remind hon. Members that, as I noted earlier, Oregon has a considerably smaller population than England and Wales. In 2023, the last year for which we have full data, Oregon had a population of just 4.25 million. By contrast, England and Wales had a population of 60.85 million—more than 14 times higher.
Perhaps it is the case that Oregon has had two assisted deaths for anorexia sufferers, as one witness told the Committee. In England and Wales, we have 14 times the population of Oregon. If it became legal for sufferers of advanced-stage anorexia to take their lives by assisted dying, we would almost certainly have more cases than Oregon.
Dr Opher
Does my hon. Friend not believe that an eating disorder is reversible? Under the Bill’s provisions, if someone has a condition that can be reversed by treatment, they would not be appropriate for assisted dying. Is she saying that eating disorders are not reversible?
Naz Shah
Absolutely not. That is not the point that I am making. Eating disorders are reversible, but it has been found that where this kind of legislation has been enacted, across the globe, somebody who has anorexia and decides not to eat then falls within the scope of assisted dying because it becomes a terminal illness.
Danny Kruger
I do not want to cut off the hon. Lady in full flow, but I want to echo her points. The hon. Member for Stroud has made his point before and we have had an exchange on it. There is quite a lot of research, to which I refer him, that shows how people in the UK, being treated by the NHS, are having diagnoses of terminal anorexia. It is happening. I refer him to Professor Agnes Ayton, the campaigner Hope Virgo and the eating disorders all-party parliamentary group in this place, which is looking at that. It seems bizarre to us, because of course someone can resume eating, but the fact is that anorexia is treated as a terminal illness in parts of the NHS today.
Dr Opher
Actually, there is a lot of debate about whether terminal states of eating disorders actually exist or not, so they cannot be said to be a real thing in that way. Some people in the profession think they certainly do not exist, so I would contest the point made by the hon. Member for East Wiltshire.
Kit Malthouse
Just to clarify, what I said earlier was slightly incorrect—I misread my briefing. While the hon. Lady may be right that the court decided not to proceed with force-feeding, a number of those applications were by the individual to stop the force-feeding. While the court decided that, on balance, that was the right thing to do, in all those cases since 2012 the individual was not found to have capacity to make decisions about their own condition; the decision was made by the court for them. That means that, under the terms of the Bill, they would not qualify. Some of those cases were quite complicated. A number of them, as I read it—
The Chair
To some extent, there is an issue here of repetition. Standing Order No. 42 gives me the power to stop potential repetition. I do not want to use it—I do not want to interfere with the debate—but I am afraid we are getting to the point of repetition. If I need to invoke Standing Order No. 42, I will.
Naz Shah
I thank the right hon. Member for his intervention, but my understanding is that the judge found that those individuals lacked capacity to make decisions about their treatment; whether they had the capacity to decide to end their life is a completely different test. I apologise in advance for repeating this, but it is not something that we have tested. They had the capacity to refuse. The judge ruled that they could not be force-fed. Tragically, in nine cases, while not force-feeding those young women would lead to their death, the judge insisted that force-feeding would not be in their best interests. That is what happened in those cases.
Kit Malthouse
I stand to be corrected, but my understanding is that in the seminal case that the hon. Lady is talking about, the case of The NHS Trust vs. L, the court decided not to force-feed L because the prognosis was that force-feeding would precipitate her death.
Naz Shah
I thank the right hon. Member for his intervention. I have talked about that case, and the court concluded:
“The prospects of her recovery overall approach zero… Given that it is extremely unlikely that Ms L will recover from her anorexia it is…in her best interests to”
move to palliative care, as it was considered a terminal illness. In some ways, that makes my point for me: she was diagnosed as terminally ill. The purpose of the amendment is to close that loophole. The majority of these cases are young girls and young women. I do not want them to get to a stage where they qualify under the Bill because they have a terminal illness due to refusing food, because that can be treated. That is the point that I am trying to make.
Let us say that only one or two people with anorexia have an assisted death if the Bill becomes law without my amendment. I hope that every member of the Committee would agree that even one such death would be unacceptable. Some might say, “Oh, but we must not make the perfect the enemy of the good.” That has been said in the debate, or sentiments have been expressed that reflect that sentence.
That is a good argument to make when we are trying to persuade our teenagers to finish their homework for school and so on. It does not wash for me when we are trying to create a Bill with the strongest possible safeguards for vulnerable adults, and it is too close to the arguments made in favour of brutal actions across the globe. We say things like, “To make an omelette, you’ve got to crack a few eggs.” If we want to make the Bill the best it can be, we cannot use such arguments. Perfection is not the enemy of the good—perfection is absolutely what we should be pursuing in this Committee.
Reference was made to one of the witnesses who gave oral evidence. I remember being aghast at the idea that these two people who died in Oregon were somehow a red herring and that there had been only two. It was really disappointing, and I was extremely angry at that comment. That is not something we should be doing or the standard we should be setting. We cannot be saying that.
There is nothing good about letting people who have sadly reached an advanced state of malnutrition be given assisted dying. Surely we can agree on that. If this Bill does not include my safeguard, it will do two things. First, it will increase the dangers of anorexia. People already develop anorexia to such a degree that they perish of malnutrition. Allowing such people to apply for assisted dying will mean that more severe anorexics die. If we do not adopt my safeguard, we run the further risk that those who are not anorexic, but wish to hasten death, stop eating in order to qualify for an assisted death. Both of those would be truly malign. I would hope all Members of the Committee will accept my amendment to protect those who would otherwise be at risk of starving themselves to an assisted death.
I also want to bring to the Committee’s attention a public letter that has been released this afternoon by nearly 40 individuals who work in the field of eating disorders. They have said, on the amendment to which I am speaking:
“This amendment states that mental illness alone does not qualify as a terminal illness, but as the legal text (“Nothing in this subsection…”) makes clear it has no effect beyond restating that the condition must meet the requirements of clause 2(1). If a doctor holds that a mental illness meets the test in clause 2(1) for terminal illness, this amendment will do nothing to prevent that.”
They further say:
“Eating disorders are treatable. They are life-threatening when left untreated or poorly treated, but this risk is preventable, and deaths from eating disorders are not inevitable. As campaigners, clinicians, charities, and organisations working with those affected, we urge the committee to take these concerns seriously and ensure this bill does not put people with eating disorders at risk of premature death under the guise of assisted dying.”
On my amendment 402, they say:
“Amendment 402: Explicitly states that a person cannot be deemed terminally ill because they have stopped eating or drinking.”
On amendment 48, they say:
“Amendment 48: Clarifies that a person is only considered terminally ill if their death is reasonably certain within six months, even with all recommended treatment.”
They are supporting those amendments, 9, 10, 48, 402 and 11. On that note, I will finish.
Sarah Olney
I rise briefly to speak against amendment 234 in the name of my good and hon. Friend the Member for Harrogate and Knaresborough. I will keep it brief as I know he is not going to press to a vote.
First, the Bill that was voted on on Second Reading was a Bill for terminally ill adults in the last six months of their lives. I do not believe attempting to amend the scope of the Bill in Committee is what the House has asked us to do. I think the House voted for a Bill that was specifically for people within the last six months of their lives and that to be amending it—although I accept he is not putting it to a vote—is not in order.
Secondly, I want to reflect on Professor Sir Chris Whitty’s oral evidence to the Committee about how difficult it is to determine when somebody is within six months of the end of their life and how much more difficult it would be to determine whether someone is within the last 12 months of their life, notwithstanding that we are talking about a very specific category of people. For me, that really does give rise to the fear that we would not be able to make a specific determination on whether somebody was in the last 12 months of their life. There would be a risk that people actually have many years left to live. In the case of motor neurone disease, for example, we have seen prognoses of between two and five years, so we risk shortening people’s lives unduly. Furthermore, people might not want to make the prognosis, and therefore people who would like to have the right to end their life in their final 12 months because they have a neurodegenerative disorder might be denied that right, because it is impossible to come to such a determination.
Danny Kruger
I accept that, which is why amendment 282 is probing only. It is trying to demonstrate the point. I recognise that even the expedited process is likely to take up to a month to get through, so that would be difficult. Nevertheless, if our intention is to restrict this to people who are literally in their last days, which is frequently what we hear, I think it would be appropriate to restrict the time.
Danny Kruger
I am not. I think we have allowed six months to creep into common legal parlance because of the Social Security Contributions and Benefits Act 1992; we now recognise in law that it is possible to have certain rights and entitlements on the basis of a six-month prognosis. I presume that is the basis of it. It does feel like a reasonable period, and I understand the rationale for it, but given the difficulty of prognosis and the intense seriousness of what we are doing, I think it is inappropriate and dangerous.
Another way of achieving greater safety—less precise but perhaps more generous to people who want an assisted death—is to tighten the definition of terminal illness to mean those whom doctors think it is reasonably certain, rather than reasonably expected, will die within six months. That is the intent of amendment 48 tabled the hon. Member for Bradford West. The amendment also insists that the condition is terminal even with “all recommended treatment”, so that somebody could not make themselves eligible by refusing treatment. That is a very important point that the hon. Lady is trying to insist on.
By the way, that does not mean—and I hope people will not conclude that it does—that someone is required to have every treatment that might be possible, including invasive and unpleasant chemotherapy. The point is that it would have to be treatment recommended by the doctor: if the doctor recommends it, then it is appropriate. A doctor might be offering chemotherapy, but they would not be recommending it in all circumstances.
For the avoidance of doubt—an important phrase— I think that the hon. Lady’s amendment 402 is very important too. Just in case nutrition is not seen as treatment—perhaps it is arguable that it may not be—it is very important that we specify explicitly that declining food or drink does not qualify someone for an assisted death.
Naz Shah
Does the hon. Member agree that one point that is really important in this afternoon’s debate is that a person has a right to refuse treatment, and indeed food and water, if they have capacity, but that malnutrition is practically reversible? The argument has been made by doctors in Oregon around the voluntary stopping of eating and drinking that doctors cannot legally force a person with capacity to eat, and if they refuse food, their condition can be considered irreversible and terminal. That is the crux of the point. Does he agree with me?
Danny Kruger
I think so. The hon. Lady is absolutely right that there is this difficult loophole that somebody may have capacity and be refusing food and drink and would therefore potentially be eligible. In the Bill as it stands, we have an expedited process for people whose prognosis is only a month. There, the 14-day waiting period could be reduced to just 48 hours. If a person stopped eating and drinking, their death would almost certainly happen within a month. In other words, a person who is not terminally ill could make themselves eligible for an assisted death within 48 hours simply by refusing sustenance. It is very important that we recognise that and explicitly exclude it.
I will refer quickly to other jurisdictions where this specific situation occurs and the voluntary stopping of eating and drinking is used to qualify for legal drugs. A peer-reviewed article in the Journal of the American Geriatrics Society discusses this case—it may be the one referred to earlier. The authors noted that if anyone can access VSED—voluntary stopping of eating and drinking—then anyone can qualify for medical assistance in dying. In Colorado, 12 people qualified for assisted suicide based on a diagnosis of severe malnutrition.
The American Clinicians Academy on Medical Aid in Dying, an organisation of doctors who provide assisted suicide, acknowledges this loophole. Its guidance states that
“there is nothing in the letter of the law”
to prevent voluntary stopping of eating and drinking from being used in this way. It adds that that would
“essentially eliminate the criteria of terminal illness,”
because a person could always qualify as having terminal illness if they stopped eating and drinking. That is obviously not what the Bill’s sponsor and drafters wish. I hope they will consider accepting the amendment to close that loophole.
I will not repeat points made very eloquently by my hon. Friend the Member for Reigate, but I echo the need to ensure that the Bill is not for conditions that, although they cannot be reversed by treatment, can nevertheless be controlled or substantially slowed. I will therefore support the amendments in the name of my hon. Friend the Member for South Northamptonshire.
I pay tribute to the hon. Member for Harrogate and Knaresborough and to the people he speaks for in tabling amendment 234. I recognise absolutely that the MND Association has pointed out that the six-month rule would not work for all MND sufferers. It successfully persuaded the last Government to change the rules on benefits in recognition of that point, and its evidence to us, it has requested a clear and workable definition for assisted suicide. It was not very clear on what that would be, and there are practical problems with extending to 12 months, specifically the one we have with six months—the difficulty of prognosis, which would be twice as bad. I also refer to the evidence from Professor Sleeman, who made the point that a non-neurologist would find it particularly difficult to make an accurate 12-month prognosis for MND.
The main reason to object to the principle of the amendment—I appreciate that the hon. Gentleman is not moving it, but it is an important principle to discuss—is that it makes no sense at all to have two different prognosis periods. Of course, we can see where it will go. The fact that the amendment has been tabled and selected, that it is in scope, and that people will support it in this Committee or beyond, or outside Parliament, is evidence of where things go. We saw it very clearly in the evidence we heard from witnesses from Australia, who pointed out that there is no logical reason to have two prognoses—one for cancer and one for neuro-degenerative disorders. Their response was, “Well, let’s make it 12 months for everyone,” and of course that is the way things would go.
I finish with a tribute to the great quixotic effort of my hon. Friend the Member for Runnymede and Weybridge, who is not on the Committee. Runnymede is the home of Magna Carta; the spirit of liberalism lives on in my hon. Friend, a genuine liberal who wants to scrap the period of prognosis altogether, because he genuinely believes in absolute autonomy. I have been trying to make the Bill live up to its claim to be a Bill for safeguarding; he wants it to live up to its claim to be a Bill for autonomy. In principle—in logic—he is absolutely right. If we think that some people should have access to suicide assisted by the state, then why should person A get it and not person B? Needless to say, I disagree with him.
Naz Shah
My hon. Friend is making a powerful speech, and I agree with what he says about autonomy. As I said earlier, autonomy does not necessarily have to lead to pain, and it could be that I do not want to get to that stage. People will never know whether they could have lived longer. Does he not agree?
Lewis Atkinson
Sensible amendments have been tabled elsewhere in the Bill—not to the clause that we are debating—that would strengthen the initial conversations and ensure that people make informed decisions and have access to, and conversations about, all the forms of support, psychological or otherwise. I think that those will address my hon. Friend’s point.
In terms of the eligibility criteria, Chris Whitty was clear that there is diagnostic uncertainty in both directions. He said that
“a significant minority of people die before they actually get to the point”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q15.]
of the six-month prognosis. Because of that uncertainty, if we attempted to make the criterion much less than six months, we would end up excluding people. From all the conversations I have had, it is clear that once people have a terminal diagnosis, they want to put their affairs in order; doing so means that they can enjoy their final months with their families. We must not reduce eligibility and limit access to those whose disease unfortunately progresses more quickly than they would like and the prognosis suggests. I therefore oppose amendment 48, in the name of my hon. Friend the Member for Bradford West.
The amendment talks about “recommended treatment”. In all my years in the NHS, shared decision making has been a key principle. No one other than the person in question can make the decision about what trade-off they are willing to accept. Invasive chemotherapy may have a 20% chance of elongating my life. Am I willing to accept a 20% chance? Am I willing to accept a 30% chance? What I decide is right for me may be different from what other individuals decide, so a doctor is not in a position to say, “You should accept this because it will give you a 10% chance,” or, “It will give you a certain level of pain that I’m willing to accept.” We each have to make those decisions ourselves.
Lewis Atkinson
No, I will make some progress.
I feel that the amendment risks pressuring people to accept courses of intervention against their will, and I do not think it is consistent with the important principles of autonomy and consent. Because of the safeguards, approvals and reflection periods built into the Bill, going through the process of approval will clearly take in excess of a month. That is why amendment 282, in the name of my hon. Friend the Member for York Central, which would limit the eligibility to one month, is fundamentally not compatible with the safeguards in the Bill, as my hon. Friend the Member for Spen Valley made clear. To me, six months is absolutely the right balance. It reflects people’s wish to put their affairs in order and allows for prognostic uncertainty on the downside—someone given six months may actually only have two or three months to live—but it still allows the operation of robust safeguards and reflection periods.
I turn briefly to the other amendments. I commend my hon. Friend the Member for Broxtowe for the points she made. I share the concern that replacing “inevitably” with “typically” would risk weakening the definition of “terminal illness” and expanding access to other conditions. I fear that “typically progressive” is a weaker interpretation, so I cannot support the change, because I support a tightly drawn Bill with tightly drawn eligibility criteria. For the same reason, although I have sympathy for the amendment tabled by the hon. Member for Harrogate and Knaresborough, I think it goes beyond the scope of what the House discussed in November and the contours of the current debate.
Amendments 9 and 10 refer to disease being controlled or substantially slowed. Those are not recognised medico-legal terms. What is the definition of “substantially slowed”? Who would define it? Is it something that takes 20%, 50% or 100% longer? We talk about the risk of inserting undefined terms and of court interpretation, and I fear that introducing such an amendment would give rise to that.
The people best placed to make decisions about whether the treatment will suitably slow the progression of the disease are the dying people themselves. They are the only people who should do that—fully informed, of course, by their medical and clinical teams. Each of us, when the end is nigh—it will come to me, as it will to us all—has to make that decision ourselves, not on the basis of a recommendation mandated in law or some definition of “controlled” or “substantially slowed”. It feels that the legislature would be putting in primary legislation decisions that I should make about the treatment that I should accept, so I am not in favour of those amendments.
I finish with reference to amendment 402. Although earlier I wanted to make progress, I do not want to rule out any further interventions, if my hon. Friend the Member for Bradford West or others would like to come in. I recognise the concern, and we need to talk about people with anorexia with the respect, dignity and seriousness they deserve. I have heard it said—I think my hon. Friend said it—that there is nothing in the Bill to stop that being the case, and I fundamentally disagree for many reasons. First, as the Bill sets out, capacity is checked eight times. The Court of Protection has repeatedly found that people with anorexia do not have the capacity to make decisions about stopping eating. Although a best interest test may have been made, that is not relevant, as set out in the Bill. People have to have the capacity to request an assisted death, checked eight times. My hon. Friend the Member for Spen Valley has already set out that she is minded to accept—or will accept—amendment 6 to clause 9(3)(b), so that, if there is any doubt about capacity, a psychiatric opinion “must” be sought.
Like my hon. Friend the Member for Bradford West, I considered the written evidence saying that, in instances of a patient with anorexia, psychiatric input is absolutely necessary. Absolutely—in every case where someone has anorexia, under an amended clause 9, psychiatric opinion must be sought as to capacity. That is before we get to the further set of amendments to clause 12.
Lewis Atkinson
That is not my understanding, and I have sought some clarification, including from Professor Hoyano, who provided oral evidence to us, and I believe that that was not her understanding either.
Given the “must” in clause 9 regarding psychiatric referral to a third tier panel—which, let us remind ourselves, is not in place in any of these jurisdictions from which figures are cited around potential deaths of people with anorexia—I feel there are significant safeguards. Furthermore, we have just agreed to amendment 399 tabled by the hon. Member for East Wiltshire, clarifying the “medical condition” piece, which provides a further safeguard.
I respect the need for us to consider these matters carefully, but I urge a degree of holistic thinking when we talk about individual clauses. Some of the statements being made—that there are no protections in place—just do not fly, to me, given the Bill as a whole.
Naz Shah
I apologise to my hon. Friend the Member for Sunderland Central; I was actually incorrect. The girls did not have capacity, so he was correct. However, in the cases that went before the court, those nine girls did not have capacity yet the judge made a decision that they should not be force-fed to keep them alive, and they should be allowed to die. Perhaps the Minister could comment on how the amendment would not meet that criteria. Would it fix that loophole?
Stephen Kinnock
I thank my hon. Friend for her intervention. I am just talking about the amendment to reduce the time from six months to one month. I will come on to the issue of eating and drinking in a second.
As amendment 282 would reduce the time within which the person is expected to die from six months to one month, it would also limit the number of people with a terminal illness who would be eligible for assisted dying under this legislation. Furthermore, there may be very challenging workability issues in delivering a service within one month, given the other time-dependent safeguards elsewhere in the Bill.
Amendment 51 would remove the requirement for the patient to have a six-month prognosis to be defined as “terminally ill”. If agreed to, it would expand the pool of people eligible for lawful assistance to voluntarily end their own life beyond those with a life expectancy of six months or less. In other words, it would remove the timeframe requirement of when death can be reasonably be expected.
Amendment 234 would widen eligibility to include cases of neurodegenerative diseases, illnesses or medical conditions where a person is reasonably expected to die within 12 months. Matters such as this are for the Committee, and ultimately for Parliament, to decide, but it is clear that the effect of the amendment would be to broaden the number of people eligible for lawful assistance to voluntarily end their own life under this legislation.
Amendment 10 would provide that, if treatment exists for a person’s progressive illness, disease or medical condition that alters the overall prognosis of that person’s condition, they are not terminally ill and would not be eligible for assisted dying services.
Amendment 402 would exclude a person who would not otherwise meet the definition of “terminally ill”—namely, being diagnosed with an inevitably progressive illness with six months or less to live—if that person meets that definition as a result of stopping eating or drinking. The effect of the amendment would be to prevent a person from being defined as “terminally ill” as a result of their own actions of stopping eating or drinking, or both. The Government’s analysis suggests that this may also exclude people who are terminally ill under the definitions of the Bill and who are, for various reasons, unwilling or unable to eat or drink. For example, it may include those with conditions such as oesophageal cancers, which could result in their being unable to eat or drink.
Furthermore, it is unclear whether someone who is on intravenous fluids or being fed through a feeding tube would be considered to have stopped eating or drinking under the amendment. I think that addresses the concern expressed by my hon. Friend the Member for Bradford West, but she is welcome to intervene again if she would like to. The amendment could therefore lead to uncertainty over the person’s eligibility for assistance under the Bill.
The Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. Questions around the definition of terminal illness and who should be eligible to access voluntary assisted dying under the legislation are matters for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to the Committee in considering the Bill and the amendments tabled by various Members.
Terminally Ill Adults (End of Life) Bill (Fourth sitting)
Naz Shah ExcerptsWednesday 29th January 2025
(2 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 29 January 2025 - (29 Jan 2025)
The Chair
Do either of the other witnesses want to come in on that?
Dr McLaren: When we started this in Victoria, we saw a bit of a gap with the implementation. A lot of the education was surrounding the legalities of providing an assessment service in a way that conformed with the legislation, rather than that focused on the clinical skills and applications. I am quite proud of the role that we have had in rolling that out, in providing that peer experience, and in focusing more on some of the clinical skills that apply within a VAD context.
Naz Shah (Bradford West) (Lab)
Q
Dr Fellingham: A point of clarification: I work in Western Australia, rather than Victoria, but I can give you a view for Western Australia, which is significantly larger, so the problem you have alluded to is much more complicated. Would you like me to speak about the Western Australian context?
Naz Shah
I was talking about southern Australia, in particular. That is fine; we can move on. Thank you.
Dr McLaren: I can speak to the Victoria question, if you prefer. To answer your question, we have a state-wide service that supplies the medication across the state. Medication for pain relief is available through standard pharmacy access, so there are no barriers to accessing medication for palliative purposes in rural Australia. It is quite hard to get voluntary assisted dying medication dispensed to Mildura, which is many hours away from the single-state pharmacy, so access is more difficult for voluntary assisted dying than for palliative medication.
Naz Shah
Q
Dr Mewett: From a palliative care perspective, like Cam and Clare, I have been involved in assessing and having discussions with many, many patients who have requested assisted dying. These patients come from a whole range of socioeconomic backgrounds. In fact, if anything, they tend to come from a perhaps slightly higher, more well-educated background. There is no evidence in our jurisdiction of Victoria, where we have had five and a half years’ experience, that people who are underprivileged, less educated or vulnerable in some other way have readier access to or apply more for VAD.
The case you alluded to, like many cases that are reported from Canada, is certainly tragic in its own way, but such cases are an absolute minority compared with patients who are genuinely determined to have a choice about the way they die and when. Those are separate issues: one is a social welfare issue, and the other is a VAD issue. A patient such as that would not be found eligible, unless he was eligible under the strict criteria that apply in the state in which he lived.
Dr McLaren: As Greg touched on there, when that gentleman applied for voluntary assisted dying, that may have been one of his drivers, but it certainly would not have made him eligible. He did not access voluntary assisted dying, so the system worked. We do see higher socioeconomic status patients applying for voluntary assisted dying. That is evidenced in our Voluntary Assisted Dying Review Board reports, which show a greater proportion of people with higher levels of education. That data is freely available through the Victoria Government website.
The Chair
Dr Fellingham, you had your hand up.
Dr Fellingham: Ms Shah asked for some evidence, and I have just looked this up. Our Voluntary Assisted Dying Board reports from Western Australia are also freely available, publicly searchable documents. Each year, the board asks the patients’ reasons for accessing voluntary assisted dying. In order of commonality, the only ones over 50% are
“Loss of dignity, or concern about it…Loss of autonomy, or concern about it”,
and
“Less able to engage in activities making life enjoyable, or concern about it”.
What that reflects to me is that the type of people who seek access to assisted dying are those who tend to be, as my colleagues said, more health literate and more socioeconomically advantaged than your average healthcare consumer, and people for whom the existential reasons that upset them about their disease process are the primary drivers for seeking access to voluntary assisted dying. It is very rarely the absence of service provision or because they feel that they do not have any other choice.
Naz Shah
Q
Dr Griffiths: There is no indication of how you would place the infrastructure for support for people whose discrimination or injustice is exacerbated through an intersectional lens—for example, the cross-cutting of different experiences—and how that can be attested for within the Bill. For example, if an individual comes forward to discuss with their doctor their concerns, there is no infrastructure for how that would be acknowledged with an intersectional critique.
There is also a concern that many within disabled people’s communities from particular backgrounds, such as women, are pre-exposed to further levels of injustice that are not accounted for, and their experiences of trying to access support for certain aspects of their life are compounded by inequalities. These issues are not addressed by the Bill. In my view, if this mechanism becomes available, the issues that some individuals face in terms of injustice will play into the consciousness of their decision to go forward with this. I cannot think of any clause or amendment that would address that issue in its totality.
Naz Shah
Q
Chelsea, thank you for your evidence. Eating disorders are classified as mental disorders under the Mental Health Act. The Bill explicitly states that a person cannot be considered terminally ill only because of a mental disorder. You have also talked about the withdrawal of insulin. Could you respond to both of these? Why do you believe that eating disorders would still meet the criteria under the Bill, and likewise for the issue of stopping insulin?
Chelsea Roff: There is a false distinction being made in the Bill between a mental disorder and its somatic or physical manifestations. Mental disorders, especially eating disorders—not just anorexia—impact the body, and have life-threatening consequences. We had 20,000 acute hospitalisations for eating disorders in this country last year, and we have massive gaps in care. Those are individuals who, if they were to choose to forgo treatment or could not access treatment because they were on a wait list for a long period of time, would qualify under this Bill.
I draw your attention to the evidence I submitted with Dr Agnes Ayton from the Royal College of Psychiatrists, and Dr Angela Guarda, a leading physician from John Hopkins University. I also draw you to our own case law in the Court of Protection where we have had physicians represent eating disorders as terminal conditions, as in the end stage of their illness.
I am grateful that you have drawn the connection to diabetes, because it is not just about eating disorders. Substance use disorders would have the same effect. Outside of mental disorders, HIV/AIDS is a progressive condition that cannot be reversed by treatment. Are you okay with a 19-year-old young man who decides to discontinue treatment qualifying under this Bill? Those are the questions you have to ask. I am not, in principle, against the Bill, but you have to look at the letters on the page, because they will be interpreted after the Bill is passed. Your constituents are depending on you.
The Chair
I am sorry, but we still have more Members and questions than we have time, so I am going to come down to one question per Member.