PARLIAMENTARY DEBATE
Terminally Ill Adults (End of Life) Bill (Twenty-fifth sitting) - 18 March 2025 (Commons/Public Bill Committees)
Debate Detail
Chair(s) † Peter Dowd, Clive Efford, † Sir Roger Gale, Carolyn Harris, Esther McVey
Members† Abbott, Jack (Ipswich) (Lab/Co-op)
† Atkinson, Lewis (Sunderland Central) (Lab)
Campbell, Juliet (Broxtowe) (Lab)
† Charalambous, Bambos (Southgate and Wood Green) (Lab)
† Francis, Daniel (Bexleyheath and Crayford) (Lab)
† Gordon, Tom (Harrogate and Knaresborough) (LD)
† Green, Sarah (Chesham and Amersham) (LD)
† Hopkins, Rachel (Luton South and South Bedfordshire) (Lab)
† Joseph, Sojan (Ashford) (Lab)
† Kinnock, Stephen (Minister for Care)
† Kruger, Danny (East Wiltshire) (Con)
† Leadbeater, Kim (Spen Valley) (Lab)
† Malthouse, Kit (North West Hampshire) (Con)
† Olney, Sarah (Richmond Park) (LD)
† Opher, Dr Simon (Stroud) (Lab)
† Paul, Rebecca (Reigate) (Con)
† Richards, Jake (Rother Valley) (Lab)
† Sackman, Sarah (Minister of State, Ministry of Justice)
† Saville Roberts, Liz (Dwyfor Meirionnydd) (PC)
† Shah, Naz (Bradford West) (Lab)
† Shastri-Hurst, Dr Neil (Solihull West and Shirley) (Con)
† Tidball, Dr Marie (Penistone and Stocksbridge) (Lab)
† Woodcock, Sean (Banbury) (Lab)
ClerksLynn Gardner, Lucinda Maer, Jonathan Whiffing, Committee Clerks
† attended the Committee
Public Bill CommitteeTuesday 18 March 2025
(Afternoon)
[Sir Roger Gale in the Chair]
Terminally Ill Adults (End of Life) Bill
Clause 18
Provision of assistance
Amendment proposed (this day): 462, in clause 18, page 12, line 20, at end insert—
“(3A) When providing a substance under subsection (3) the coordinating doctor must explain to the person that they do not have to go ahead and self administer the substance and they may still cancel their declaration.”—(Danny Kruger.)
Question again proposed, That the amendment be made.
Amendment 463, in clause 18, page 12, line 34, leave out paragraph (c).
Amendment 497, in clause 18, page 13, line 9, leave out “decides” and insert
“informs the coordinating doctor that they have decided”.
This amendment provides that the duty to remove the approved substance arises on the coordinating doctor being informed that the person has decided not to self-administer the substance.
Amendment 498, in clause 18, page 13, line 10, leave out
“that the substance is not”
and insert
“to believe that the substance will not be”.
This amendment clarifies the circumstances in which the coordinating doctor is under a duty to remove the approved substance from the person.
I have set out why I feel that although amendment 463 arises from good intentions, it would not achieve what is intended. There is a real risk that the constraints that adopting the amendment would create would lead to the regrettable unintended consequence of individuals being forced to have an assisted death at an earlier stage than they would otherwise have wished.
I can deal with amendments 497 and 498 in short order. They would tighten up the Bill by providing greater clarity around the circumstances in which the substance would be removed from the presence of the individual who had previously indicated a wish to have an assisted death. Amendment 497 specifies that the individual would need to set out to the co-ordinating doctor that they no longer desired to go through with the process. In my view, that is eminently sensible. Amendment 498 elaborates on the Bill to provide greater clarity to those who will be operating it. It will make it a much more workable piece of legislation. I support both amendments.
Amendment 462 would amend clause 18 to require the co-ordinating doctor to explain to the person that they do not have to proceed and self-administer the approved substance, and that they may still cancel their declaration. Although it is not specified, it is presumed that the amendment refers to the second declaration that the person will have made. The Committee may wish to note that there is already a requirement in clause 18(4)(b) that,
“at the time the approved substance is provided”,
the co-ordinating doctor must be satisfied that the person
“has a clear, settled and informed wish to end their own life”.
The purpose of amendment 463 is to limit what the co-ordinating doctor is permitted to do in relation to providing the person with an approved substance under clause 18. As the clause stands, subsection (6) sets out the activities that the co-ordinating doctor is permitted to carry out in respect of an approved substance provided to the person under subsection (2). It states that the co-ordinating doctor may
“(a) prepare that substance for self-administration by that person,
(b) prepare a medical device which will enable that person to self-administer the substance, and
(c) assist that person to ingest or otherwise self-administer the substance.”
Additionally, subsection (7) provides that
“the decision to self-administer the approved substance and the final act of doing so must be taken by the person to whom the substance has been provided.”
Amendment 463 would remove subsection (6)(c), which would result in the co-ordinating doctor being unable to assist the person
“to ingest or otherwise self-administer”
the approved substance. The co-ordinating doctor would still be permitted to prepare that substance for self-administration and to prepare a medical device to enable the person to self-administer the substance. This could mean that a co-ordinating doctor may not be able to provide assistance such as helping the person to sit up to help with swallowing, or explaining how the medical device for self-administering the substance works. This could result in practical difficulties in self-administration of the substance and/or place the co-ordinating doctor in a difficult position.
“assist that person to ingest or otherwise self-administer the substance.”
I would interpret that slightly differently from the Minister. It talks about ingesting, which suggests the substance entering the body, so I would not suggest that sitting someone up would qualify. That in itself shows that perhaps there is some ambiguity here. The Minister has set out something that I had not read into the Bill. Will he comment further on that?
“assist that person to ingest”
means something else. I am really concerned that it could be interpreted differently from how the Minister has laid it out. I want to place that on the record and raise that issue, which I believe the hon. Member was also raising.
Amendment 497, on which the Government have worked jointly with my hon. Friend, would amend clause 18(11), which states:
“Where the person decides not to self-administer the approved substance, or there is any other reason that the substance is not used, the coordinating doctor must remove it immediately from that person.”
Under the clause as it is currently drafted, there could be difficulties in relation to the duties of the co-ordinating doctor where the co-ordinating doctor does not know what the person has decided. Amendment 497 seeks to resolve that ambiguity by clarifying that the duty on the co-ordinating doctor to remove the approved substance applies where the person
“informs the coordinating doctor that they have decided”
not to self-administer the approved substance.
I turn to amendment 498. At present, clause 18(11) provides that the co-ordinating doctor has the duty to immediately remove the approved substance where the person decides not to self-administer the approved substance, or there is any other reason that the substance is not used. The amendment clarifies that the duty to remove the substance arises when the co-ordinating doctor believes that the substance will not be used. I hope that those observations have been helpful to the Committee.
I am happy to support amendment 462, tabled by the hon. Member for East Wiltshire, about which we had a conversation this morning. I only make the observation that there is already a requirement in clause 18(4)(b) that, at the time the approved substance is provided, the co-ordinating doctor must be satisfied that the person has
“a clear, settled and informed wish to end their own life”.
Nevertheless, I am happy to support the amendment, because the hon. Member made a very valuable point this morning.
I cannot support amendment 463, however. The Bill states that the patient must self-administer the drugs. Clause 18(7) states that “the final act” of self-administering the substance
“must be taken by the person to whom the substance has been provided.”
That is very clear. The hon. Member for Solihull West and Shirley, with his medical background and expertise, has been clear and helpful on this point: it is a question of passive versus active. We have to be clear that the patient must have an active role in self-administration.
Amendment 462 agreed to.
Amendment made: 496, in clause 18, page 12, line 28, after “professionals” insert “, and such other persons,”.—(Kim Leadbeater.)
This amendment provides that the coordinating doctor may be accompanied by such persons (other than health professionals) as the doctor considers necessary.
Amendment proposed: 463, in clause 18, page 12, line 34, leave out paragraph (c)—(Danny Kruger.)
Question put, That the amendment be made.
“(d) subject to subsection (6A), provide additional assistance to administer the substance in the presence of an independent witness.
(6A) The coordinating doctor may provide the additional assistance under subsection (6)(d) when—
(a) the coordinating doctor is satisfied that the person is permanently and irreversibly unable to self-administer the substance due to—
(i) significant risk of choking as a result of dysphagia, or
(ii) the loss of use of the limbs; and
(b) the person has authorised that the additional assistance be provided.”
This amendment would define the eligibility criteria for those who are permanently and irreversibly unable to self-administer the substance and are therefore eligible for additional assistance to administer the substance.
Amendment 351, in clause 18, page 12, line 35, after “substance” insert
“or to authorise additional assistance to be provided”.
This amendment would ensure the decision to administer the approved substance remains with the person but would allow those who are unable to self-administer the substance to receive further assistance.
Amendment 352, in clause 18, page 12, line 40, at end insert
“, unless the criteria in subsection (6A) are met.”
This amendment would authorise the coordinating doctor to provide additional support with administration for those who are unable to self-administer the substance.
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.
“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.
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.
I pay tribute to the hon. Gentleman, because he has correctly identified a group of patients for whom the drafted Bill may present obstacles to the fulfilment of their wish for an assisted death. My belief is that the ability to assist will probably cover almost anybody who wants it and has found a doctor who wants to help them, but the hon. Gentleman is right that there are some groups for whom that might be more of a challenge than others. I think the answer we are going to get—it is one made by hon. Members in the debate already—is that technology will fix it, and I fear it will, because I think we are going to find ourselves in a world in which it is perfectly possible for the administration of death to be enabled through some kind of technological device, which somebody with the most limited physical mobility will nevertheless be able to activate.
I fear the insistence that we have on self-administration. Although we can all acknowledge, as referenced in the previous debate, the conceptual difference between administration and self-administration, we do have this idea that we are individuals cut off from each other and that there is an essential gap between us and other people. At the very end of life, though—in the moments that we are considering and legislating for—that distinction is void, because we are intimately connected with other people, as per the clauses that we are debating. I fear that we are going to find ourselves in a world in which a laptop will be set up and even a movement as small as the blink of an eyelid by the patient will be enough to trigger what will be called “self-administration” of the fatal dose.
I oppose this group of amendments, moved by the hon. Member for Harrogate and Knaresborough, because I do not believe in assisted suicide. I do not understand why other supporters of the Bill are not following the hon. Gentleman’s lead, and acknowledging that if we believe in autonomy and assisted suicide, of course we should enable patients to have the final act performed upon them, rather than insisting on this arbitrary distinction that it is possible to insist on self-administration in all cases.
We need to think about the conversation that doctors will be required to have with patients who are expressing that wish. If the Bill is widely drawn, as it would be if we were to accept these amendments, there is more opportunity for a doctor to feel compelled to assent to a request.
“a medical device which will enable that person to self-administer the substance”.
That subsection, in effect, negates the scenario that is put forward in amendment 350 around dysphagia or the loss of a limb. It would permit, for example, the use of a nasogastric tube or a percutaneous endoscopic gastrostomy feeding tube to be used for the administration of the substance in the case of dysphagia. In the case of the functional loss of limbs, as was discussed in the debate on the previous group, a range of assisted technologies are available that would remove the barriers that that would present.
Beyond the necessity, or lack of necessity, of these amendments, I fear that they create legal uncertainty, which is clearly undesirable and, in this instance, could have a serious and significant unintended consequence through the amendments’ interaction with clause 24. Subsection (3) of that clause inserts proposed new section 2AA of the Suicide Act 1961, which is an exemption to that Act in respect of the assistance provided under this Bill. In effect, proposed new section 2AA disapplies sections 2(1) and 2A(1) of the Suicide Act where the provision of assistance is done in accordance with the Bill. Those sections specifically relate to an act
“capable of encouraging or assisting the suicide or attempted suicide of another person”.
Introducing the concept of additional assistance, as these amendments would, creates a legal uncertainty. The word “additional” creates a further concept that is beyond assistance but is, thus far, ill defined. Would it go as far as, for example, the clinician taking full control of administering the substance? It is entirely unclear. It would therefore place the clinician in an invidious position as to what it would mean for them to provide additional assistance in such circumstances. As I read the interplay between the Suicide Act and the proposed legislation, the clinician would not then be exempt by virtue of clause 24(3), leaving them open to prosecution under the Act.
For the reasons I have set out, I consider that the amendments create unnecessary and highly undesirable legal confusion, so I shall not support them.
“does not authorise the coordinating doctor to administer an approved substance to another person with the intention of causing that person’s death.”
Amendment 350 seeks to enable the co-ordinating doctor, in the presence of an independent witness, to provide “additional assistance” to the person to administer the approved substance. Such assistance can be provided only where the person has authorised it, and where the person is
“permanently and irreversibly unable to self-administer the substance”
due to a significant risk of choking due to difficulty swallowing—dysphagia—or loss of the use of their limbs. The term “additional assistance” is not defined in these amendments.
Amendment 351 is consequential to amendment 350 and would require any decision to authorise additional assistance for the self-administration of the substance to be made by the person to whom the substance has been provided. Amendment 352 would create an exception to the condition in clause 18(8), and would have the effect of permitting the co-ordinating doctor to administer an approved substance to another person with the intention of causing that person’s death where the criteria introduced in amendment 350 are met—that is, where the co-ordinating doctor is satisfied that the person is permanently and irreversibly unable to self-administer the substance, and that the person has authorised that the additional assistance be provided.
Our assessment is that the amendments would enable the co-ordinating doctor to administer the approved substance to the person, rather than merely assisting the person, in the limited circumstances provided for in clause 18(6), to self-administer. That would be a significant change to one of the fundamental principles of the promoter’s Bill—that the final act of administering the approved substance must be taken by the person themselves, and not by a co-ordinating doctor. That is a policy matter and a decision for the Committee.
However, should the amendments be accepted, further amendments may be needed to ensure that this provision is fully legally coherent and workable in several areas. First, amendment 350 does not define who qualifies as an independent witness—for example, whether this would have to be a health professional or whether it could be a family member. Secondly, it does not address whether anyone would be disqualified from being an independent witness, as provided for through clause 36, which is entitled “Disqualification from being witness or proxy”.
Finally, as drafted, amendment 350 does not detail how authorisation of the additional assistance must be obtained and/or recorded in order to be valid. It also does not require that any details about the independent witness be recorded. This could lead to difficulties in complying with and/or evidencing that the requirements to provide the additional assistance have been met. By extension, there will be a lack of clarity over when and how the criminal provisions are to apply. I hope that those observations were helpful.
While I am hugely sympathetic to the argument, that is a line that I do not believe the Bill should cross. I concur with the comments of my hon. Friend the Member for Bradford West about Second Reading and what the House voted for, and with those of the hon. Member for Reigate about medical profession levels, which we discussed this morning. I also agree with the Minister’s comments about the concept of an independent witness, and with the comments from the hon. Member for Solihull West and Shirley about the concept of additional assistance. On that basis, I will not be supporting the amendments.
Amendment, by leave, withdrawn.
“(9A) Where the procedure has failed, the coordinating doctor must escalate the care of the person by making the appropriate referral to emergency medical services.”
This amendment would require the doctor to escalate the care of the person in cases in which the procedure fails.
Amendment 429, in clause 18, page 13, line 7, leave out subsection (10).
Amendment 436, in clause 18, page 13, line 8, after “provided” insert—
“(10A) If complications occur as a result of the provision of assistance the coordinating doctor must—
(a) make a detailed record of the complications in the patient’s medical records,
(b) make a declaration on the final statement issued under section 21, and
(c) make a report to the relevant Chief Medical Officer and the Voluntary Assisted Dying Commissioner.”
This amendment would require the coordinating doctor to record any complications in the patient’s medical records, to make a declaration on the final statement issued under section 21, and make a report to the relevant Chief Medical Officer and the Voluntary Assisted Dying Commissioner.
Amendment 464, in clause 18, page 13, line 8, at end insert—
“(10A) If the person loses consciousness and it appears to the coordinating doctor that the procedure is failing, the coordinating doctor—
(a) must not do anything with the intention of causing the person’s death, and
(b) must seek to revive the person.”
Amendment 532, in clause 18, page 13, line 12, at end insert—
“(12) The Secretary of State must by regulations make provision about what the coordinating doctor is legally permitted to do if it is determined by the coordinating doctor that the procedure has failed.
(13) The regulations under subsection (12) must include what specific actions can legally be taken by the coordinating doctor if—
(a) there is a greatly prolonged time to death,
(b) the person has been rendered unconscious, or rendered unfit to make a second attempt at self-administration, but has not died, or
(c) the person is otherwise undergoing complications.”
Amendment 533, in clause 18, page 13, line 12, at end insert—
“(12) For the purposes of subsections (2) to (11), the Secretary of State must, by regulations, specify where the provision of assistance under this Act may take place.
(13) Before making regulations under subsection (12), the Secretary of State must consult such persons as the Secretary of State considers appropriate.
(14) The persons to be consulted under subsection (12A) may include—
(a) persons requesting or considering requesting assistance to end their own lives, and
(b) professionals working in palliative and end-of-life care, including hospice staff, and
(c) persons from disadvantaged and marginalised communities, and
(d) registered medical professionals and other healthcare professionals.”
Amendment 430, in clause 30, page 18, line 30, at end insert—
“(da) responding to unexpected complications that arise in relation to the administration of the approved substance under section 18, including when the procedure fails;”
Amendment 255, in schedule 6, page 32, line 13, at end insert—
This would add the means of administration to the final statement set out in Schedule 6.
On amendments 532 and 533, tabled by the hon. Member for Ipswich, I again support in principle the requirement—although there is a little too much regulation by the Secretary of State, in my view—that we be clear about where the act should take place and make provision about what the co-ordinating doctor is legally permitted to do if they determine that the procedure has failed. That is the point I really want to discuss; the amendments tabled by the hon. Member for York Central (Rachael Maskell), and the amendment that I tabled, would impose an obligation on the co-ordinating doctor to provide assistance if the procedure fails.
Let me take a moment to explain to the Committee how important it is that we recognise the genuine risk of that eventuality in the case of assisted suicide being performed. There is significant evidence—even given the lack of adequate data collection and the paucity of record keeping, with over half of assisted deaths not properly recorded at all in many places—that in places such as Oregon, which is one of the worst offenders when it comes to data collection, there are significant rates of complication. These can be difficulty with ingesting the drugs, regurgitation and seizures. As I said, 72% of deaths do not record whether complications have occurred, but among the quarter that do, there are significant rates of complication.
Sometimes death can take days, and there can be a long time of unconsciousness. The Committee has heard from me and others in previous debates about the extent to which there is real concern about the actual experience of the administration of assisted death. But it is striking how ill-defined the current Bill is on the point about complications, compared to jurisdictions where such laws are in operation. In other countries, there is clear guidance in law for what should be done. In the Netherlands, euthanasia is recommended when assisted suicide seems to be failing; in Canada, doctors are likewise given licence to administer the death themselves if it fails. The Committee has decided not to proceed down that road. Nevertheless, the question arises as to what on earth patients should do.
To the point that we are talking about a small or non-existent population group—those we might have to worry will experience complications after the administration of fatal drugs—I refer back to a previous debate, when the hon. Member for Stroud, referring to me, said:
“The hon. Gentleman is bringing up lots of rather horrible stories about assisted death. That is why, in Australia, Switzerland and Holland, they have decided, instead of using the regime that he is talking about, to use pentobarbital…One of the reasons why Dignitas uses it is that it is so effective and it does not have those effects.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 11 March 2025; c. 925.]
Having looked into the issue and consulted other medics, I am afraid that the fact is that the safety of pentobarbital is highly contested. It has been debated in litigation in the United States because of its use as a death penalty drug. The executioners who used it said that the deaths were peaceful and akin to falling asleep, but lawyers for inmates on death row have said that
“pentobarbital caused flash pulmonary edema, in which fluid rushes through quickly disintegrating membranes into lungs and airways, causing pain akin to being suffocated or drowned.”
That is evidence from professionals who have examined the effect of pentobarbital on deceased people.
The anesthesiologist Joel Zivot of Emory University hospital in the United States testified to the Canadian Senate on the subject of assisted suicide drugs. He said that when he researched the autopsies of those executed by lethal injection, he stumbled on an alarming discovery:
“When I looked at the autopsies, to my surprise, I found that, in most of the cases, the individuals who had been executed by pentobarbital had fluid congested in their lungs. The lungs of these individuals were twice the normal weight, full of water. Now, the only way that this could have happened would have been as a direct consequence of the pentobarbital that was injected into these individuals.”
What is the relevance of that for assisted dying?
“no cases of failure at Dignitas using this medication”?
Nevertheless, I want to try to explain why I am suggesting that we have a problem with the drugs that are used in assisted dying and that it has been suggested we use here. Let me continue the quote from Dr Zivot:
“When one watches an execution, it’s not clear that this is happening”—
meaning that it looks like a peaceful, painless death. He continues:
“There is not much to see. Executions, like, I imagine, medical assistance in dying, are a rather bloodless event; not much can be seen outwardly. But the autopsies revealed a very disturbing and surprising finding.”
He makes the point that that is particularly disturbing, given that assisted dying often uses a paralysing drug, which induces the impression of peace and calm in the patient, when in fact something else might be going on below the surface.
To conclude my quote from Dr Zivot, he says:
“To claim that this is a death that is peaceful, well, it can be nothing else because now a person is unable to move in any way, but whether or not they have any conscious experience of what is happening is unknown…it should be clear to the Canadian public that the kind of death that they will experience…will be something other than the way it is represented. It could be exceedingly painful and more akin to drowning.”
I cannot judge whether Dr Zivot is right, but we should be very wary of any claims that there is a simple answer to the question surrounding lethal drugs. To the point made by the hon. Lady, and I think by the hon. Member for Stroud, there is no evidence in the many reports from Dignitas, which has a regime very similar to the one we are imagining here—I will certainly look at the evidence mentioned made by the hon. Lady—that contradicts the concerns raised by Dr Zivot.
To the hon. Gentleman’s point about making it clear to clinicians what drugs they are permitted to use, we also need to have a proper regime of clearing and approving those drugs. In earlier clauses, we debated the imperative on the NHS, the Medicines and Healthcare products Regulatory Agency and the Department of Health to properly authorise the specifics of what drugs will be used. It is not clear at the moment what those would be, and I very much agree that we need to be clearer on that.
I finish with a reference to an earlier debate, in which it was suggested, on the basis of the Australian example, that there is no evidence of complications. The hon. Member for Stroud talked about horrible stories from the United States and Canada. He also referred to Australia, where there is apparently no evidence of problems. In fact, I understand that of the six states, only Western Australia records complications, and it does so in relation only to practitioner administration—when the doctor administers the drug—which we do not propose to do here. It does not record complications in relation to self-administration, which is what the Bill proposes. In Western Australia, complications have been reported in 4.3% of cases involving practitioner administration. Again, we are dealing with the great mystery and enigma of how death happens with assisted suicide, and it is certainly unclear what we should do about it.
I am afraid that goes for the whole field. There is a great mystery in this space, and the Bill does not clarify it, I am afraid to say.
I defer to the hon. Member’s knowledge, but my understanding from the scientific evidence I have read, and that medics have given to me, is that the extent to which people executed by lethal injection, by pentobarbital, have their lungs fill with fluid is peculiar—it is remarkable. They effectively drown beneath their peaceful exterior.
I intend to press amendment 464 to a vote, and I intend to support other amendments in this group. Although I support the aspiration of amendment 532 to make provision for what to do in the event of a procedure’s failure, I think it gives too much leeway to the Secretary of State, so I will oppose that amendment. I think the amendments that the hon. Member for York Central and I have tabled are preferable.
To make the obvious case for those amendments, and as I said in a previous debate, there are three choices in the event of failure. The first is to ignore the plain signs of distress, of things going wrong and of the patient suffering, which is clearly a failure of the doctor’s duty of care. The second is to expedite the death, which we have decided would be illegal under the Bill. Therefore, the only option is to revive the patient and escalate treatment, rather than actively or passively facilitate their death.
I hope Members will agree that, on the rare occasions when assisted suicide goes wrong, it is right that the patient is immediately revived and taken to hospital, or for the doctor to take whatever action is necessary. I am interested to understand why those amendments should not be supported.
“must remain with the person”
and subsection (10) says:
“For the purposes of subsection (9), the coordinating doctor need not be in the same room as the person”.
We also discussed how that works in other jurisdictions. My amendment 429 would deal with that conflict. If the Bill were to become law, that conflict could be queried.
We also need to consider the possibility of complications. Clearly, if there are complications and the doctor is not in the same room, they would not necessarily be aware of those complications. I accept that, in some normal circumstances, doctors and medical professionals are not present in the room at the time of death; at other times, they are present. The amendment would mean that if something were to go wrong and someone was having a painful reaction to the drugs, the doctor would be there to see and help.
I do not understand what the Bill means when it says the doctor does not have to be in the same room. How far away would the doctor have to be? One subsection says the doctor has to remain with the person, and the following subsection says they do not have to be in the same room. If the Bill were to pass, we would be asking doctors to do something that is unprecedented. If the person were to suffer complications such as seizures or vomiting, or if they were exhibiting signs of distress, it appears that the doctor should be present. Members may think this could encroach on a patient’s privacy, but I think there is a discrepancy between the two subsections.
On amendment 430, I am conscious that my hon. Friend the Member for Ipswich has tabled a similar amendment. The intention of my amendment is to ensure there are regulations in responding to any unexpected complications that arise in relation to the administration of the approved substance, including when the procedure fails. I am conscious that if a doctor intervenes, they could end up in breach of the Suicide Act 1961. I therefore left the wording in that vein, as I understand that we will receive more information in due course.
Again, we received oral evidence from a number of people that what a doctor is meant to do in the event of unexpected complications is a matter of concern from both a legal and a medical perspective. We know from the evidence received from other jurisdictions that—I accept in a small minority of cases—there can be complications or the death can take much longer than expected. We also received evidence that, on rare occasions, death can take days.
Amendment 430 would show we have thought about those circumstances and provided for them by giving doctors a code of practice to refer to, rather than being left in the dark if a difficult situation arises at the time of death. We must not find ourselves in a circumstance in which doctors and patients are unprepared. It is important for us to think through, provide for and safeguard against all possible scenarios, however rare they might be. Of course, we would not want them to happen, but in some circumstances they might, and we would not want there to be a legal hole. Accepting the amendment would mean the Secretary of State has the opportunity to provide a code of practice for such circumstances. I hope hon. Members will be able to support the amendments in my name.
I do not understand how subsection (9) can require the doctor to remain with the person until they have self-administered and died, or until they have decided not to self-administer, while subsection (10) states that the doctor need not be in the same room. The Bill becomes even less coherent when we consider subsection (11), which requires the doctor to remove the substance immediately if the person decides not to self-administer—how can the doctor do so if they are not in the same room? Amendment 429 would make the scheme more coherent and I support it for that reason.
I accept that there are downsides to having the doctor present, especially before the administration, as people have a normal desire for privacy, but that needs to be balanced against the risk of someone else taking the substance or something going wrong in the process of self-administration. In Australia, there is no requirement for the doctor to be present, which has led to some cases of abuse. I understand why the Bill’s promoter has chosen not to go down the Australian route, but the position arrived at in subsection (10) lacks coherence and is unclear.
What does it mean to remain with the person without being in the same room? Does it mean being in the corridor just outside the room, but with the door open? What if it is closed? What if, as a result of the door being closed, the doctor is no longer within earshot? I am not the only one who is confused, as so are the doctors who will have to apply the legislation. For example, Dr Janet Menage, a retired GP, told us in written evidence—TIAB 182—that the provisions
“are mutually exclusive: doctor ‘must remain with the patient’ but ‘not in the same room’…This makes no sense. In any case, if the attending doctor is not in the same room there could potentially be an intervention by another person to the patient’s detriment. Or the patient may wish to cancel the suicide at the last moment and be unsupported in voicing that decision.”
With or without subsection (10), I would like to know whether the Minister has made an assessment of the workforce impact of such a requirement for the doctor to be present. As Dr Rebecca Jones told us:
“As the death may take many hours, I’m uncertain of the practicalities of this”.
As Dr Rebecca Jones told us in written evidence:
“As the death may take many hours, I’m uncertain of the practicalities of”
doctors remaining with the patient
“for many doctors…have competing demands on their time.”
In written evidence, Dr Chris Ainsworth asked how this will work in cases where death takes several days, as has happened in Oregon, while Dr Trevor Stammers wrote:
“If the doctor is required to be present until the patient’s death, this may require hours of practitioners’ time to fulfil and is unlikely to be adhered to in many cases if the dying process is protracted.”
Dr Rachel Fisher said in her written evidence that for Australian doctors, who are not required to be present at the final act, each assisted death requires around 60 hours of professional time. For British doctors, we will need to add the time it takes for the self-administration to result in death. Dr Fisher also raised the real impact on doctors, writing,
“imagine the practicalities of those who must deliver it. The GP, motivated by a deep desire to preserve life and relieve suffering arrives at the home of the patient with a cocktail of powerful drugs. What if the patient has symptoms? Who will collect their child from nursery or school if the patient takes a long time to die? How will they know when to decide the death was unsuccessful? Will there be counselling for GPs observing and feeling complicit in a potentially drawn out and symptomatic death?”
Finally, Dr Paul Shaw asked in his written evidence:
“How will this service be funded? What support will be required from the NHS when things go wrong or death takes longer than expected? Will this be a 0900-1700hrs service? What will be the out of hours arrangements?”
A lot of the written evidence touches on the practicalities of a doctor being required to remain with the patient until they die. Amendment 429, in the name of the hon. Member for Bexleyheath and Crayford, seeks to clarify whether “being with the patient” requires the doctor to be physically present in the room.
I totally understand the concerns about the Bill being overly prescriptive about the regulations that could be passed down to the doctors making such decisions. However, it is important that we enable the Secretary of State to provide guidance, in addition to GMC regulations, on what the co-ordinating doctor must do if the procedure has failed. At the moment, the Bill simply states:
“The coordinating doctor must remain with the person until”
that time. However, I appreciate that amendment 429, if passed, would cover that issue.
Clause 9 states:
“The assessing doctor must…discuss with the person their wishes in the event of complications arising in connection with the self-administration of an approved substance under section 18”.
However, the Bill as drafted is not clear about what a doctor is legally permitted to do in the event of such complications. That is particularly important, as the Bill expressly states that the final act of administration must be taken by the person themselves. Therefore, the Bill as it stands stipulates that the doctor must discuss the patient’s wishes in the event of complications without stipulating what actions the doctor can take in such an event and thus what the patient’s options actually are.
There is a gap in the Bill and a lack of clarity on that critical issue, which has been raised frequently in both written and, to an extent, oral evidence. Dr Alexandra Mullock argued that, as
“the Bill would only permit”
a doctor only to assist in the patient’s self-administering a substance,
“administering drugs to end the life of a patient who might be unconscious (but not dying) is not permitted.”
She also raised the possibility that a patient might regain consciousness, but
“be too ill to make a second attempt”
at self-administration. What should a doctor do if that occurs? Unless the Secretary of State clarifies what a doctor can do in that situation—my amendment would not do that; it would merely give the Secretary of State direction to do so—the co-ordinating director could be placed in a difficult position.
Professor Alex Ruck Keene argued that the Bill as it stands could lead to the potential for medical professionals to be “required to stand by”, yet without being able to take steps to respond to complications so as to ensure that the process is completed. I fully appreciate that all doctors would use their good training, common sense and years of extensive practice to make a best-case judgment, and we would always support them in that, but the Bill has the unintended consequence of not giving doctors true cover in that area.
Dr Mullock also asked what should occur if the patient survives a procedure, “but is badly affected”. What treatment should be provided? Should the patient be moved to hospital? Should the patient be sedated or made comfortable until a natural death occurs, or should the doctor be able to take steps for the patient to die following the initial failed attempt? We need answers to those questions. Amendment 532 does not seek to answer them, but it would stipulate that the Secretary of State must do so at a certain point.
I do not think it is possible to legislate for every single eventuality. I do not believe that whether to revive or not revive will be so black and white; it will completely depend on the scenario at that particular moment in time. Therefore, further work would need to be done over the coming months and years before the final introduction of the Bill. I believe that it is important to allow the time for that work to happen alongside the existing guidance as it stands.
I do not seek in my amendment to stipulate exactly what every single permutation might be—indeed, that could run to many pages and beyond. The amendment seeks to empower the Secretary of State and the Department to make sure that those eventualities, and the concerns that the hon. Member for East Wiltshire has raised, are covered by regulations over time.
In my view, the failure to provide a clear answer to these questions is an oversight. Data from Oregon shows that it is unfortunately not totally uncommon for patients to suffer complications following the administration of a lethal substance. In 2023, of the 102 patients for whom we have data on whether they suffered complications—out of a total of 367 patients who died by assisted death in Oregon in that year—10 suffered complications. That is just under 10% of the patients we have data for.
Of those 10, eight had difficulty ingesting the substance or regurgitated it. One suffered a seizure, and for one we have no data of what complications occurred. If I may say so to the hon. Member for East Wiltshire, that goes back to the variances that I referred to. It is not as simple as whether to resuscitate or otherwise. There are a number of different factors. Although that is a relatively small sample size, it shows the diversity of the challenges ahead.
In Oregon, information about complications is reported only when a physician or another healthcare provider is present at the time of death, which means that we evidently have less data on this issue than is desirable. However, despite the small sample size, that data would put the complication rate at one in 10. It would not be a completely uncommon occurrence for patients to experience complications following the administration of a lethal substance, although it would be rare.
As I say, my amendment does not seek to stipulate in the Bill exactly what measures have to be taken in every single scenario. I am not suggesting for a moment that we have to legislate about what we must do in the event that, for instance, someone has difficulty ingesting the substance; I am sure that will come naturally with the GMC regulations. I fully appreciate the points made about how this will probably naturally occur, but it is important to provide a reassurance that we are looking at the long-term effects in such scenarios.
Everyone will take their own personal opinion about that, but we want to be very clear about any risks that might come about, and we have already stipulated that this will be part of the process. Everyone should be very clear about the process—what it will look like and the associated risks. Many people will look at this and still say, “This is the path for me”, but that of course will be their own judgment.
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.
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.
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.
I frankly struggle to see what objections hon. Members could have to amendment 436. If it is that doctors will be gathering that data as part of their good practice, then we are hardly adding a burden to them by including it in the Bill. If we say that doctors will in any case be putting this information on their final report, then again, putting that requirement in the Bill is hardly a great burden for anyone. If we say that doctors will in any case be reporting the data to the chief medical officer, then I am rather more sceptical, but again, if they were doing that as a matter of routine then there is hardly any problem with requiring them to do it as a matter of law.
If England and Wales are to have assisted dying, it should not be conducted as it is in other jurisdictions. The states that currently have it gather patchy and incomplete evidence on the complications that people suffer. Let me repeat that those complications include pain, vomiting and lengthy deaths. We want to avoid people suffering those, and one way that we can do that is to gather data on how often it occurs. The amendment would do exactly that, and I hope all members of the Committee can support it.
What those of us in terminal care do is react to what is happening with the patient. For example, if they start to be sick, we would give them an anti-emetic; if they start to become very agitated we would then give them midazolam. What I am saying is that this is normal medical care. We have to be very careful not to stipulate in the Bill what is actually normal medical care.
I understand that what we are proposing is a new option that has not been there before, and we know that there are complications. But in a terminal situation, there would be no occurrence where we would call an emergency ambulance and take them to hospital, for example.
One of the key things the hon. Gentleman said is that the doctor administers the drug. This is self-administered, first of all, so that is a very clear line. However, also, in a case of terminal care—this is what I am trying to get across to the Committee—we know the patient is dying, and therefore if they are becoming worse we simply do things to make them comfortable, and we do not try to revive them, because they are dying. It is important that we realise that this is a very different medical situation from normal care, and that it actually needs very different skills as a doctor. Here, a doctor is not trying to prolong life, but trying to make a death as comfortable as possible.
That is why I support the Bill—because I think it will enhance a comfortable death. I wanted to make it clear that that is normal practice now in terminal care: we do not revive a patient with a terminal diagnosis who is in terminal care, but we make them comfortable.
On amendment 436, all medical practitioners are required under their code of practice to record any event they come across. I feel there should be better data and I agree with the hon. Member for East Wiltshire that we need to collect data. We are actually very good at doing that in the NHS. Under clauses 21 and 22 there are provisions for the Secretary of State to collect data on complications. I am therefore not sure that particular amendment tabled by my hon. Friend the Member for York Central is necessary. I think I have covered amendment 464, from the hon. Member for East Wiltshire.
On amendment 429, about the doctor being in the same room, I totally understand the anxieties presented by my hon. Friend the Member for Bexleyheath and Crayford, but I feel that whether the doctor is there should be the choice of the family and the patient. There may be some confusion about this, but to me, what the Bill implies—I am interested to hear the Government’s opinion—is that the doctor should deliver the medicine to the patient, check that the patient is willing to take the medicine as per amendment 462 from the hon. Member for East Wiltshire, give the medicine to the patient, and then ask the family whether they want them to be there or in the next room. They need to be available, but do they need to be in the same room? I think that should be the choice of the family.
“need not be in the same room”.
I do not want to get into measuring metres, but where exactly is that place? Is it in the same room or is it in the same building? If it is in the same building, you cannot possibly be with the person until they die. Does my hon. Friend have comments 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.
Let me conclude by saying that I know that the amendments all come from a good place, and that this is an anxious time, but terminal care is an anxious time for doctors, for patients, for everyone, because we do not know exactly what is going to happen. The Bill allows someone a way of dying, when they have a terminal illness, that has a bit more exactitude than normal practice.
When it comes to the location and, actually, a lot of the elements, I fear we are trying to over-specify practical matters. As in so many cases, this is not about capacity, coercion, assessment and so on; it is about the practicalities of death, and it is right that we allow the healthcare team for dying people and their families to operate with the professional skill with which they currently operate.
On amendment 429, on the doctor being in the same room, I can think of many instances in healthcare in which a healthcare professional is in an adjoining room, potentially even with a door open so there is a line of sight, and that is entirely appropriate. I think of observations, for example, in various settings. That provision is absolutely necessary and allows an appropriateness of proximity without intrusion. I am sure the doctor will be in the room at the point at which the substance is taken, but if someone then goes into unconsciousness fairly quickly, as would happen in the vast majority of cases, and then takes half an hour or so to die, it is entirely unnecessary for a doctor to be standing there in the same room, towering over the family, when they could be near at hand. I just do not think we need to specify that in the Bill.
I have some sympathy with amendments 532 and 533, tabled by my hon. Friend the Member for Ipswich, on the Secretary of State setting out regulations, but I fear the hon. Member for East Wiltshire did an excellent job of persuading me that they should not be accepted, because when a “must” is included in that way, we get into saying, “The Secretary of State must tell a doctor exactly what they must do in every situation.” The legal parameters are clearly set out in the Bill as drafted. There is no administration by a doctor on a person’s behalf; it must all be self-done. Additionally, we have not yet mentioned the existing provisions in clause 9(2)(c), which requires, at the point of assessment, a conversation between the assessing doctor and the patient about their wishes in the event of complications or any sort of delay.
The surgeon would say, “If this procedure fails, would you wish me to attempt resuscitation? Would you wish to be put on a support system?” The hon. Gentleman misunderstands current practice on consultation with patients, in advance of procedures, about their wishes, which is where there is significant established evidence.
On amendment 533, tabled by my hon. Friend the Member for Ipswich, I suspect that, in dealing with a later clause, we will have a conversation about issues around hospices and care homes, but again I find the requirements under the amendment unduly onerous. As my hon. Friend the Member for Stroud and others have said, often people’s preferred place of death is at home. Are we really saying that the Secretary of State would specify addresses or the nature of places where these procedures should take place?
In reality, healthcare procedures do not happen ubiquitously: they happen in appropriate places with appropriate cultural sensitivity. We do not specify in primary legislation for that to happen. Health professionals, and those involved in the management and commissioning of health services, currently have ample opportunities to co-ordinate and consider such matters.
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.
The hon. Lady is right that the Government’s responsibility is to take on whatever passes through Parliament and implement it to the best of our ability. My job in this Committee is to raise concerns about risks of amendments that could potentially muddy the waters more than other amendments, or more than the Bill as it currently stands. It is a balanced judgment about whether we are better off with the Bill as it currently stands, whether the amendment would improve the Bill, or whether it could lead to concerns about the integrity of the statute if it were included.
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”.
“discuss with the person their wishes in the event of complications”.
Is that unclear? If not, what is the difficulty with specifying “complications” in clause 30?
One is a conversation that can be explored between the clinician and the patient in advance, in a managed environment; the dialogue can take place in a considered manner. The second situation is one in which there is a particular physical manifestation and it is up to the clinician to take a rapid position and to decide, according to all the elements that they usually use, such as the GMC’s “Good medical practice”, other codes of practice and their own professional judgment.
I am afraid that I do not understand the Minister’s distinction. Either it is possible to set in advance the sorts of responses that would be appropriate in the event of complications—the word “complications” is already in the Bill, so is clearly acceptable—or it is not. In the event of complications arising when the patient has not given clear instructions in advance, surely it is appropriate for the doctor to be able to rely on guidance, whether that is in the Bill or set out by the Secretary of State subsequently.
There needs to be clarity about what to do because, to repeat the point, this is not normal medicine—a fatal drug has been introduced into the body. That is not a normal medical situation in which a doctor just uses their clinical judgment; the only appropriate clinical judgment in such circumstances is to attempt to save the patient’s life, because that is what doctors are supposed to do. But we are telling them that they have been allowed to help a patient to die artificially. In that circumstance, what are they supposed to do when that is clearly not working?
“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?
I would like to know whose responsibility it is to ensure that doctors are not left in that position, which could come about either because the Bill as drafted is not clear or the amendments do not make the appropriate clarification. The hon. Member for Spen Valley has done a marvellous job, but in terms of policy intention the Bill does not cover this aspect. The Minister is saying that it is his job only to ensure that the amendments are appropriate. I am still very concerned that there is a big gap here and that we are potentially leaving doctors in the very difficult position of not knowing whether or not carrying out the patient’s intentions would leave them in the position of breaking the law. I would like to know whose responsibility it is to ensure that doctors are not left in that situation.
In these circumstances, it is the view of the Government that we should continue to rely on the skill, judgment and expertise of medical practitioners, underpinned by the various codes of practice—the GMC, or good medical practice, being probably the most obvious one. There is an understandable desire to use primary legislation to address issues of this kind, but it is important to point out that that could prove to be counterproductive and that we could end up with a Bill that becomes less workable and therefore potentially less safe—what one might call the law of unintended consequences.
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.
Amendment 430 would broaden the Secretary of State’s power to issue codes of practice under clause 30. 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.
I understand that amendment 255 is no longer relevant as it relates to schedule 6, which is going to be changed—I think that is right—so, in that sense, the amendment is null and void. I hope that those observations were helpful.
We have had a thorough discussion of the range of amendments that look at how we deal with complications. My view is that amendment 430 would do what needs to be done. We need the Bill to show that this has been considered, and the logical place for that would be clause 30, on codes of practice. I am happy to support that amendment when the time comes to vote on it.
Amendment 532, tabled by my hon. Friend the Member for Ipswich, comes from a good place as is meant to be a way of trying to help the doctor, but I worry, as medical colleagues have commented during our deliberations, that it could create more of a problem for the doctor in that it would remove flexibility and the use of their clinical judgment and expertise. It always worries me when we are considering putting that level of detail in the Bill.
We have had a really interesting discussion about amendment 533, and we will probably come further down the line to discuss where patients should have the choice to have an assisted death. I am not entirely sure how the amendment would work, which is why I am not minded to support it.
I am slightly concerned about the terminology and am not sure what the definition of “disadvantaged and marginalised communities” would be for the purposes of the amendment. I refer my hon. Friend the Member for Ipswich to new clause 8—the duty to consult—bearing in mind that there will be a long period of consultation before the Bill, if it passes, is enacted.
The Minister referred to amendment 255, which I think will fall as it refers to a schedule that has been removed from the Bill.
Amendment, by leave, withdrawn.
Question put, That the amendment be made.
Amendment proposed: 436, in clause 18, page 13, line 8, after “provided” insert—
Question put, That the amendment be made.
Amendment proposed: 464, in clause 18, page 13, line 8, at end insert—
Question put, That the amendment be made.
Amendments made: 497, in clause 18, page 13, line 9, leave out “decides” and insert
Amendment 498, in clause 18, page 13, line 10, leave out
and insert
Amendment proposed: 532, in clause 18, page 13, line 12, at end insert—
Question put, That the amendment be made.
Amendment proposed: 533, in clause 18, page 13, line 12, at end insert—
Question put, That the amendment be made.
Question put, That the clause, as amended, stand part of the Bill.
Clause 19
Authorising another doctor to provide assistance
The amendment ensures the person has been consulted before they have given consent for another medical practitioner to be authorised to provide assistance.
Amendment 210, in clause 19, page 13, line 22, at end insert—
“(2A) Regulations under subsection (2)(b) may in particular provide that the required training, qualifications or experience is to be determined by a person specified in the regulations.”.
This amendment enables regulations under subsection (2)(b) to provide that the required training, qualifications or experience is to be determined by a person specified in the regulations.
Amendment 499, in clause 19, page 13, line 25, at end insert—
“(3A) Where a registered medical practitioner who is authorised under subsection (1) is not satisfied of all of the matters mentioned in section 18(4), they must notify the coordinating doctor immediately.”
This amendment provides that where a practitioner authorised under clause 19(1) is not satisfied of all of the matters mentioned in clause 18(4), they must immediately notify the coordinating doctor.
Amendment 22, in clause 19, page 13, line 32, at end insert—
“(5A) Regulations under subsection (2)(b) must specify that training in respect of domestic abuse, including coercive control and financial abuse is mandatory.”
This amendment would require that, in the event of the coordinating doctor authorising another registered medical practitioner to provide assistance under the Act, that other registered medical practitioner must also have undertaken training on domestic abuse, including coercive control and financial abuse.
Clause stand part.
On the other hand, the patient might be placed under undue pressure to say yes so as not to inconvenience the doctor, and then find that they will go through their final moments, including the final check for capacity in the absence of coercion, with a complete stranger. We need to confront the fact that there may be unscrupulous private clinics where the highly paid co-ordinating doctor the patient meets at first is swapped for someone else.
In those scenarios, amendment 408 and the requirement that the patient be consulted could be a protection for the patient, because consultation goes beyond mere consent, implying a deeper involvement in the decision-making process. In cases of illness or unavailability, the co-ordinating doctor might need to act swiftly to delegate. Simply obtaining written consent could feel transactional, like ticking a box, and leave the patient uninformed about why the change is happening or who the new doctor is. Consultation would mean discussing the reasons for the switch, introducing the replacement’s credentials, addressing any concerns and ensuring the patient feels heard.
In terms of geographical constraints, a patient might face a sudden shift in their care team due to relocation. Consent alone might suffice legally, but consulting them and explaining why a local doctor is needed and how that affects their care plan respects their agency, especially in a process as personal as an end-of-life decision. With workload or scheduling conflicts, delegation might prioritise efficiency. Asking for consent could be a formality, but consulting the patient about their comfort with the new doctor, or even offering options where feasible, would ensure that their preferences shape the outcome, making it not just about the doctor’s convenience.
In cases requiring specialist input, the patient might not grasp why a new practitioner is involved. Consultation detailing the replacement’s expertise and how it benefits their care turns consent into an informed partnership and not a rubber stamp. Even in cases of ethical discomfort, where a doctor steps back, consultation could reassure the patient that the change reflects the practitioner’s limits and is not a judgment on their choice, fostering trust in the replacement.
The Bill’s requirement for written consent is a start, but mandating consultation could ensure that patients are active participants in this critical transition, not passive recipients. Should their voice not carry more weight than a signature?
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.
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.
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.
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.
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.
On amendment 408 in the name of my hon. Friend the Member for Broxtowe, who sadly is not with us today, it could be argued—and I take on board the comments by the hon. Member for Solihull West and Shirley—that it is unnecessary because it would be common practice by practitioners to consult. However, I also take on board the fact that the word “consultation” does some heavy lifting, and I think that is an important point, so I am happy to support amendment 408.
I have mentioned already in response to my hon. Friend the Member for Bradford West that I am happy to support amendment 22, for the reasons I have given previously in relation to similar amendments.
Amendment 408 agreed to.
Amendments made: 210, in clause 19, page 13, line 22, at end insert—
“(2A) Regulations under subsection (2)(b) may in particular provide that the required training, qualifications or experience is to be determined by a person specified in the regulations.”
This amendment enables regulations under subsection (2)(b) to provide that the required training, qualifications or experience is to be determined by a person specified in the regulations.
Amendment 499, in clause 19, page 13, line 25, at end insert—
“(3A) Where a registered medical practitioner who is authorised under subsection (1) is not satisfied of all of the matters mentioned in section 18(4), they must notify the coordinating doctor immediately.”
This amendment provides that where a practitioner authorised under clause 19(1) is not satisfied of all of the matters mentioned in clause 18(4), they must immediately notify the coordinating doctor.
Amendment 211, in clause 19, page 13, line 31, leave out subsection (5).—(Kim Leadbeater.)
See the statement for Amendment 187.
Amendment made: 22, in clause 19, page 13, line 32, at end insert—
“(5A) Regulations under subsection (2)(b) must specify that training in respect of domestic abuse, including coercive control and financial abuse is mandatory.”—(Naz Shah.)
This amendment would require that, in the event of the coordinating doctor authorising another registered medical practitioner to provide assistance under the Act, that other registered medical practitioner must also have undertaken training on domestic abuse, including coercive control and financial abuse.
Amendment made: 212, in clause 19, page 13, line 33, leave out subsection (6).—(Kim Leadbeater.)
See the statement for Amendment 188.
Clause 19, as amended, ordered to stand part of the Bill.
Clause 20
Meaning of “approved substance”
“two or more drugs or other substances with different techniques of administration”.
The amendment requires that the Secretary of State specifies two or more drugs or other substances, which have different techniques of administration.
Amendment 465, in clause 20, page 13, line 36, at end insert—
“(1A) A drug may only be approved under this Act if it has been approved by the Medicines and Healthcare products Regulatory Agency for that purpose.”
Amendment 466, in clause 20, page 13, line 36, at end insert—
“(1A) A drug may only be approved under this Act if the Secretary of State is reasonably of the opinion that there is a scientific consensus that this drug or combination of drugs, is effective at ending someone’s life without causing pain.”
Amendment 437, in clause 20, page 13, line 38, at end insert—
“(2A) The doses and types of lethal drugs specified in any regulations made under subsection (1) must be licensed by the Medicines and Healthcare products Regulatory Agency.”
This amendment would require that any drugs and doses to bring an end to someone’s life under the Act be licensed by the Medicines and Healthcare Products Regulatory Agency.
Amendment 438, in clause 20, page 13, line 38, at end insert—
“(2A) The doses and types of lethal drugs to bring about the person’s death must be recommended by either the National Institute of Clinical Excellence or the All Wales Medicines Strategy Group in Wales’ guidelines as appropriate prior to licensing.”
This amendment will require the doses and types of lethal drugs must be recommended by either the National Institute of Clinical Excellence or the All Wales Medicines Strategy Group in Wales as appropriate.
Amendment 467, in clause 20, page 13, line 38, at end insert—
“(2A) Regulations under subsection (1) are subject to the affirmative procedure and when tabling the draft of the statutory instrument the Secretary of State must at the same time lay before both Houses of Parliament a report setting out all relevant information on the likely time to death, complications and likely side effect.”
Amendment 482, in clause 20, page 13, line 39, leave out “negative” and insert “affirmative”.
Clause stand part.
My amendment 465 states:
“A drug may only be approved under this Act if it has been approved by the Medicines and Healthcare products Regulatory Agency”.
Amendment 437 in the name of the hon. Member for York Central would achieve a similar objective. My amendment 466 would require that the drugs
“may only be approved under this Act if the Secretary of State is reasonably of the opinion that there is a scientific consensus that this drug or combination of drugs, is effective at ending someone’s life without causing pain.”
I also support amendment 482 in the name of the hon. Member for York Central, which would move the approval of the regulations to the affirmative procedure.
Those who support this Bill argue that death through the administration of lethal drugs offers dignity and the avoidance of suffering. If that is to be the case, the drugs used must be effectively regulated and life must be ended effectively and without pain. The amendments I have mentioned specify the role of the Medicines and Healthcare products Regulatory Agency; in my view, to leave this entirely in the hands of the Secretary of State, as clause 20 does, is quite an extraordinary step. It feels remarkable that the Bill as drafted leaves this enormous question to the Secretary of State.
[Peter Dowd in the Chair]
Good afternoon, Mr Dowd; it is a pleasure to serve under your chairmanship.
Throughout the Bill, important questions are left to regulations made subsequently by the Secretary of State. I think that is inappropriate here. When patients are prescribed medicines, in most cases the medicine will be licensed by the MHRA for use for the treatment of the particular condition. Patients can be assured that the medicine has been evaluated by the MHRA to ensure that it meets safety and efficacy standards. The MHRA reviews clinical trial data, inspects manufacturing facilities, monitors post-market safety and conducts independent quality testing so that there is regulation of medicine.
I have two concerns with my own amendments here; they might have occurred to other hon. Members, too, if they are paying attention. First, I do not accept that the procedure we are debating here is in fact healthcare. The question then arises, “Why are you proposing that the healthcare regulator would oversee the administration of the drugs?” My response to that is, “Well, somebody’s got to do it.” In fact, we are talking about substances that might be used in a medical setting, that would be appropriate in other medical settings, and that will have an effect on the body comparable to that for which they are licensed for medicine. Obviously, the intention is the direct opposite: they are licensed for genuine medicine and healthcare in order to preserve life and treat symptoms, but the intention here is to eliminate life without reference to symptoms.
Nevertheless, the only appropriate authority in our country is the MHRA—unless we were to conceive of another new body that would have that specific responsibility. However, that body would have the same obligations that the MHRA does to ensure that the substance is safe, paradoxically, in the sense of not causing unwanted side effects or distress to the patient.
The second objection—there is no reason why hon. Members present would know about it, but I have spoken in the main Chamber before about my concerns about the MHRA—is that, while I have just cited all the work that the MHRA is supposed to do in the regulation of medicines and healthcare products, I am afraid it does not do that job well. I do not want to give the Committee the impression that I think we have a perfect regulator; I think we have a very imperfect regulator in all sorts of ways.
In fact, the hon. Member for Stroud and I have participated in debates on the regulation of antidepressants and addiction-forming prescribed drugs, an important debate in which he and I are on the same side. There is genuine concern about the way the health regulator operates—we will not get into covid vaccines and other things at this moment; we have enough on our plate.
Nevertheless, despite the problems with the MHRA and the fact that I do not want to give the impression that I am concluding that assisted suicide is in fact healthcare, somebody has to do this. We cannot allow a situation in which the patient takes an overdose of a drug with no controls to ensure that the drug meets quality standards and does the job that it is meant to do. A tablet that is licensed for prescription or sale would need to have a minimum level of purity of the active substance, and to be free from other substances and contaminants that might cause unpleasant side effects or reactions. Without regulation, there is a risk that the drug may fail to work as intended or may induce unwanted side effects, such as those that we are all concerned about.
The question is: what safety standards should apply to an approved substance used for the purpose of assisted dying? A drug used to bring about death is not curing or preventing disease, or alleviating symptoms to improve death.
As I have stated, I do not accept that we are talking about healthcare here; nevertheless, we are using products that are comparable to health products. The MHRA would need to significantly adapt its work in order to identify the most effective drug to cause what we currently perceive as harm—namely, the death of a patient. I recognise that that would be a significant change of remit and work for the MHRA, but we need to do it. One of the reasons that we need regulation of approved substances is to help ensure that falsified versions of the drug—drugs that do not have a licence for use in assisted dying—cannot enter the market. Such drugs may not be effective and could cause distress to those ending their lives and their families. I would be grateful if the Minister could clarify whether, in his view, clause 20 is sufficient to establish the necessary regulatory regime, or whether further legislation will be needed.
We had evidence from Greg Lawton, and other pharmacists, who wrote to the Committee to suggest that the approved substances would not legally come within the definition of a “medicinal product”, so medicines law, the protections associated with medicines and the MHRA licensing process might not apply. If that is the case, what do we do about it? We need a new licensing regime to ensure that the MHRA is able to properly regulate the substances, or, potentially, another regulatory agency would need to be established to do the job.
The Committee needs to make sure that there is a process that applies to approved substances used for assisted dying. It is not necessarily the case that a product licensed for treating a medical condition could not be used to bring about death—it is not the case that we cannot use any drug that is currently used for genuine health treatment—but it would not be being used as a medicine, so medicines law may not apply to its use for that purpose. There is an ambiguity, and I would be grateful for clarity on it.
The amendments that I am supporting would ensure that the MHRA had approved the drug for the specific purpose of ending someone’s life, and that there was scientific consensus that the drug would be effective for that purpose. The MHRA, in the marketing authorisation for the approved substance, would define the dosage of the drug required to bring about death. It would also ensure that specific considerations and warnings were placed in the product licence.
For example, some patients have allergies to certain drugs. If they decide to end their own life, that should be brought about as a result of the effect of the drug, not an unintended allergic reaction to it. Some patients would not be able to take drugs orally and might need to have the drug administered through a tube into the stomach, so different formulations would need to be available. Some drugs may need to be administered by injection. Patients may be unable to do the injection themselves, as we have discussed. Even if the patient is physically capable, injection techniques require proper training, and that needs to be considered when licensing drugs for assisted dying if the patient is responsible for self-administration.
There will be further considerations when deciding what drugs can be used. Patients will have a right to know what to expect. If they take the drug orally, how long will they have to wait before they die? Will they lose consciousness first? If so, how long will that take? Could there be some side effects or reactions after taking the drug, such as seizures or choking, that the family or carers will have to deal with? Can the drug be taken at home—that relates to the point that the hon. Member for Ashford made—or must it be used in a clinical setting? We have suggested that it could be used at home, so questions about transportation arise. Is a combination of drugs required? If so, in what order should they be taken? What happens if the patient passes out before taking the entire concoction of drugs? Has the drug formulation been optimised for the purpose of assisted dying, so that it reaches maximum blood levels as quickly as possible?
All these sorts of questions are appropriate for medical regulators. The MHRA could ensure that the patient information leaflet, and the warnings associated with it, given with the drug when it is prescribed prompt doctors to think about what drugs are most suitable for the patient and to provide information to the patient about what to expect.
Parliament must have oversight. It must bear responsibility for the kinds of deaths that it approves. Both Houses of Parliament should approve the statutory instrument. To inform that decision, the Secretary of State should provide all relevant information on the likely time to death, and on complications and side effects. When the state is creating a regime that will end lives, there must be maximum transparency and accountability, yet the Bill provides that this will be done by a negative statutory instrument. In other words, Parliament will get a say on the regulations only if the Leader of the Opposition prays against them—that is the process for a negative SI. That is the only circumstance under which the Government would make time for a debate and a vote on a negative SI. Given that this is an issue of conscience, I find it inconceivable that the Leader of the Opposition would want to take a position on it and so pray against it to trigger a proper debate. I think it is highly likely that Parliament would never get a say on this crucial issue because of the use of the negative procedure.
That situation has been recognised repeatedly as being unacceptable. When Lord Falconer introduced his Assisted Dying Bill to the House of Lords in 2014, it too provided for a negative SI power on this matter. The highly respected House of Lords Delegated Powers and Regulatory Reform Committee—we do not have an equivalent Committee in the Commons, but it sits over Parliament—said that it did not consider either the power or the procedure in the Falconer Bill to be appropriate, yet that is the procedure that we are being presented with here.
In 2021, when Baroness Meacher introduced her Assisted Dying Bill to the House of Lords, the Delegated Powers and Regulatory Reform Committee again issued a report, in which it said:
“In the interests of clarity and transparency on such important issues of public policy, the matters that are in due course to be dealt with under clause 4(7) by negative regulations should in our view be spelled out in detail on the face of the Bill from the outset. Accordingly, the Bill should contain a definitive list of medicines, and details of the manner and conditions under which such medicines are to be dispensed, stored, transported, used and destroyed. The power to amend such matters should be a matter for regulations subject to the affirmative procedure.”
We then come to Lord Falconer’s 2024 Assisted Dying for Terminally Ill Adults Bill, which he withdrew following the introduction of this Bill by the hon. Member for Spen Valley. That Bill in part took on that feedback from the Lords Committee. Although it did not provide a list of medicines, it did at least provide that the power to specify the drugs would be through the affirmative procedure.
The Hansard Society, which is non-partisan and neutral on assisted dying, has issued a critical report on this power. It says:
“MPs may wish to enquire why Kim Leadbeater has chosen not to adopt the scrutiny procedure set out in the 2024 bill, but has preferred that proposed in the 2014 and 2021 incarnations of the bill, despite the advice to the contrary of the Delegated Powers Committee.”
I would be grateful to learn from the hon. Lady why she has chosen this procedure.
It might be objected that the list that I am requesting might need to be modified quickly and that the affirmative procedure—having a parliamentary vote—would be an obstacle to doing that. The Hansard Society anticipated that objection. It said that
“this could be addressed by making provision for the use of the ‘made affirmative’ procedure in urgent cases where the Secretary of State wishes to remove a substance from the approved list and is of the opinion that it is necessary to do so immediately in order to prevent adverse medical events or failed assisted deaths. This would mean Ministers could act expeditiously but Parliament would have to debate and approve – albeit retrospectively – the change in the list. Whilst not perfect it would provide more opportunity for oversight than that offered by the negative scrutiny procedure.”
It seems to me that there is no justification for this vital matter to be regulated under the negative procedure. Too much power and responsibility is being given to Ministers subsequent to the passage of the Bill— if that is what happens. My amendment 467 would ensure that Parliament has a meaningful say, through the affirmative procedure, and that a report is published as part of that process setting out the expected efficacy of the drugs that will be used. I hope that the Committee will support it.
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.
I refer the Committee to the written evidence that we received from a group of 17 experts in the field, headed by Máire Stapleton, a member of the British Pharmacological Society. The evidence number is TIAB 255. The pharmacological experts say:
The experts say that the preliminary review of evidence on drugs used for assisted dying identified
They say this is a “low evidence zone” and argue that a comprehensive review is required before the Bill is finalised. My hon. Friend the Minister for Care has repeatedly said that the Government will publish an impact assessment for the Bill once Committee stage is over; will he tell us whether the Government are carrying out a comprehensive review of the evidence on drugs used for assisted dying? If the Government do not currently plan to do so, will he please assure the Committee that this will change and a review of assisted dying drugs will take place? I look forward to hearing his response.
As well as data on complications, we need data on efficacy—that is, whether the lethal drugs will work to end life within a reasonably short period of time. The data on that is also limited. I am not the only hon. Member to have noted that there is very limited data on drug complications and efficacy from Australia. That is because the majority of assisted deaths in all the Australian states are the result of self-administration. Since no doctor has to be present for the majority of assisted deaths in Australia, we simply do not know how many people suffer complications or how long they take to die.
As other Members have noted, Western Australia does publish data on the complications suffered by people who were assisted by healthcare professionals. The Western Australia official annual report 2023-24 said that 4.3% of those people suffered complications during death. The same report explicitly said that the Government there have no data on the complication rate for the majority of people who self-administer drugs.
The pharmacological experts I referred to presented some evidence on complications and efficacy from other countries. They say:
Their source was the state of Oregon data summary for the Dying with Dignity Act. The experts also cited an academic study of assisted dying in the Netherlands that was published in 2016:
Let me sum up the problems with using drugs to bring about assisted dying. We know that these drugs will cause pain and distress to some people who take them. We know that they will cause a quick death for other people, but a longer one for some people and an even longer one for others, but we do not have the evidence to be able to say which combinations of drugs are better than others. Nor do we have the evidence to be able to say what the probability of having a reasonably swift and painless death is.
If we made the MHRA the regulator for lethal drugs, that would not solve those very difficult problems, but it would make them easier to address. The MHRA would examine evidence from other countries before any assisted dying scheme began. It would be able to build an evidence base as England and Wales implemented this law. That information would allow us to do several things. It could inform patients about the risks of complications and prolonged death from using assisted dying drugs, which would give people the information they deserve if they are to make an informed choice. That information could and should be used to research how to reduce the chance of complications and prolonged deaths. It should also be used to inform the decisions that the House makes if we have to amend this law or approve regulations under the positive procedure.
This country has one of the best reputations in the world for high standards of drug regulation. That reputation is something we all benefit from. It increases the quality of treatment for patients in the NHS, and it is one of the reasons why we are one of the world’s leading centres for pharmaceutical research. That is not something we should risk throwing away. We must avoid a situation where assisted dying becomes a second-rate service that accepts lower standards than exist for medical treatment. That would be a very dangerous road to go down.
The MHRA is undoubtedly the best qualified agency in this country to undertake such a task. We could create another quango to specifically monitor the efficacy of and complications around lethal drugs, but that organisation would be starting from scratch, and it would almost certainly have to recruit its staff from the MHRA. We could give the task of monitoring drug efficacy and complications to the newly created commissioner, but I have warned before that we are giving the commissioner—one person—too much power to mark their own homework and, again, the commissioner would have to recruit experts in pharmacology, whereas the MHRA already has some of the best in the world.
We should be using the world-class pharmaceutical regulator we already have to oversee the drugs that will be used for assisted dying, and I urge all Committee members to support the amendment, which is a very important safeguard.
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.
A further impact of the amendment may be to require that the approved substances are licensed by the MHRA specifically for the purpose of assisted dying. This would require additional powers or provisions to ensure consistency with the current legal framework. These are not provided for in the Bill as it is currently drafted.
I turn to amendment 438. The National Institute for Health and Care Excellence in England and the All Wales Medicines Strategy Group in Wales play a key role in providing evidence-based best practice guidance for the NHS, including on whether medicines should be routinely funded by the NHS. NICE’s recommendations are typically based on clinical and cost effectiveness considerations. It typically makes recommendations only on medicines that have already been proven safe and efficacious. The amendment requires treatments to be recommended as best practice by these bodies as a condition of receiving a marketing authorisation or other approval. This would alter the usual order for licensing and might pre-empt the decision of the regulators.
Amendment 467 would change the regulation-making procedure for specifying approved substances from the negative procedure to the affirmative procedure, meaning that the provision would require a higher level of scrutiny in Parliament before becoming law. This would increase the timeline for legal and operational delivery of the approved list of substances and might impact the two-year commencement period set out in clause 42. Our assessment of the requirement for a report containing all relevant information to be laid at the time of laying the regulations is that it may raise legal and operational difficulties, as there is a lack of specificity about what the report should entail.
Amendment 482 would mean that regulations specifying one or more drugs or other substances as approved substances would be subject to the affirmative procedure instead of the negative procedure. The affirmative procedure would require approval by both Houses of Parliament, which may extend the timeline to make or change regulations and could extend the overall timeline for delivery. I hope that those observations have been helpful to the Committee.
Amendment, by leave, withdrawn.
Amendment proposed: 465, in clause 20, page 13, line 36, at end insert—
“(1A) A drug may only be approved under this Act if it has been approved by the Medicines and Healthcare products Regulatory Agency for that purpose.”—(Danny Kruger.)
Question put, That the amendment be made.
Question put, That the amendment be made.
Amendment proposed: 467, in clause 20, page 13, line 38, at end insert—
Question put, That the amendment be made.
Amendment made: 213, in clause 20, page 13, line 39, leave out subsection (3).—(Kim Leadbeater.)
Clause 20, as amended, ordered to stand part of the Bill.
Amendment made: 214, in clause 21, page 14, line 9, leave out “Schedule 6” and insert
“(3A) The coordinating doctor must, as soon as practicable, give a copy of the final statement to the Commissioner.”
This amendment requires the coordinating doctor to give the Commissioner a copy of a final statement.
Amendment 500, in clause 21, page 14, line 10, at end insert—
“(3A) Regulations under subsection (3)(a) must provide that a final statement contains the following information—
(a) the person’s full name and last permanent address;
(b) the person’s NHS number;
(c) the name and address of the person’s GP practice (at the time of death);
(d) the coordinating doctor’s full name and work address;
(e) the date of each of the following—
(i) the first declaration;
(ii) the report about the first assessment of the person;
(iii) the report about the second assessment of the person;
(iv) the certificate of eligibility;
(v) the second declaration;
(vi) the statement under section 13(5);
(f) details of the illness or disease which caused the person to be terminally ill (within the meaning of this Act);
(g) the approved substance provided;
(h) the date and time of death;
(i) the time between use of the approved substance and death.”
This amendment provides that regulations about the form of a final statement must make the provision mentioned in paragraphs (a) to (i).
Amendment 439, in clause 21, page 14, line 20, at end insert—
“(7) The relevant body must supply—
(a) full medical records,
(b) court records, and
(c) all documentation relating to the assessments and procedures,
relating to bringing about the death of the person in accordance with this act must be made available to the Chief Medical Officer and the Assisted Dying Commissioner.
(8) For the purposes of subsection 7 the ‘relevant body’ is—
(a) the coordinating doctor, if they are a practitioner with the person’s GP Practice;
(b) in any other case, the person’s GP practice.”
This amendment would require full medical records, court records and all documentation relating to assessments and procedures to be supplied to the Chief Medical Office and Assisted Dying Commissioner.
Clause stand part.
Amendment 500 provides that regulations about the form of the final statement must make the provision mentioned in paragraphs (a) to (i) of proposed new subsection (3A). It builds on my amendment 214, which would amend subsection (3)(a) to require that the form of the final statement must be set out in
“regulations made by the Secretary of State”.
This is another way of ensuring robust and thorough reporting.
In this debate, we have acknowledged the importance of record keeping. If the intention is to maintain public confidence in the system, should there not be some provision to record whether complications happen and what complications there were? This skirting of the issue of complications is concerning. We have ruled out explicitly informing patients of the risk of complications.
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.
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.
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.
Amendment 379 would require that, where a person has been provided with assistance to end their life and has died as a result, the co-ordinating doctor must provide the voluntary assisted dying commissioner with a copy of the final statement under clause 21 as soon as practicable. That links to the commissioner’s role in monitoring the operation of the Bill, as set out in new clause 14. Amendment 500 sets out the information that must be included in the form of a final statement, which is to be set out in regulations in accordance with amendment 214.
The effect of amendment 439 would be to introduce a new requirement for the relevant body, defined as either the co-ordinating doctor or the person’s GP practice, to provide full medical records, court records and all documentation related to assessments and procedures relating to bringing about the death of the person in accordance with the Bill to the chief medical officer and the voluntary assisted dying commissioner. The amendment is broad, and it is not clear whether doctors would be able to comply with the duties fully.
For example, GPs do not normally have access to court records, and would need to request them to provide them to the chief medical officer and the commissioner. Currently, a decision to share court records is made at the discretion of the judiciary in most cases. As such, any statutory burden to disclose court records agreed by both Houses would require consultation with the independent judiciary. Depending on the type of record, there could also be data protection considerations.
Amendment 379 agreed to.
Amendment made: 500, in clause 21, page 14, line 10, at end insert—
“(3A) Regulations under subsection (3)(a) must provide that a final statement contains the following information—
(a) the person’s full name and last permanent address;
(b) the person’s NHS number;
(c) the name and address of the person’s GP practice (at the time of death);
(d) the coordinating doctor’s full name and work address;
(e) the date of each of the following—
(i) the first declaration;
(ii) the report about the first assessment of the person;
(iii) the report about the second assessment of the person;
(iv) the certificate of eligibility;
(v) the second declaration;
(vi) the statement under section 13(5);
(f) details of the illness or disease which caused the person to be terminally ill (within the meaning of this Act);
(g) the approved substance provided;
(h) the date and time of death;
(i) the time between use of the approved substance and death.”—(Kim Leadbeater.)
This amendment provides that regulations about the form of a final statement must make the provision mentioned in paragraphs (a) to (i).
Clause 21, as amended, ordered to stand part of the Bill.
Clause 22
Other matters to be recorded in medical records
“(1A) The coordinating doctor must, as soon as practicable, notify the Commissioner that this has happened.”
This amendment requires the coordinating doctor to notify the Commissioner of a matter mentioned in subsection (1).
Amendment 440, in clause 22, page 14, line 34, at end insert—
“(4) For the purposes of subsections (2) and (3)(b), the information recorded must include—
(a) any interventions made by a medical practitioner in response to the procedure failing, and
(b) the timing of those interventions.”
This amendment would specify certain information to be recorded under section 22 when the procedure fails.
Clause stand part.
“(a) any interventions made by a medical practitioner in response to the procedure failing, and
(b) the timing of those interventions.”
Should the procedure fail and the person start to suffer complications, record keeping will be vital. That is particularly true because the Bill does not provide clear guidance on what doctors should do if a person starts to suffer complications during the assisted dying process; it states that a doctor and the applicant should discuss before the procedure what the applicant’s wishes would be if they suffer complications. We have heard from the Minister that doctors should use their clinical judgment when that happens to a person undergoing assisted dying. Some doctors may commence lifesaving treatment; others may decide to wait and watch while the patient suffers complications in the hope that those complications do not last too long.
Collecting accurate records will enable the authorities, including the Secretary of State for Health and Social Care, to compile information on people suffering complications during assisted dying procedures, however few they are. That in turn would allow for several things. It might allow doctors to compile data on which drug combinations and methods are most likely to bring about complications. It could help doctors and medical authorities to write procedures for responding to patients who suffer such complications. That information could also be used to inform patients about the likelihood of suffering complications if they go ahead with assisted dying.
We have heard from several hon. Members that good record taking is essential to monitoring and safeguarding assisted dying. Unfortunately, in other jurisdictions there are significant gaps in the data on when patients have suffered complications. In Oregon, records are destroyed the year after each annual report, and physicians are not required to be present when lethal drugs are taken, so the reports of complications depend on information provided by whoever was present at the time. Complications are recorded via a form, but in 2023, 72% of complications in cases were listed as unknown.
Simply recording the fact of a procedure failing will not provide enough information for monitoring, review and improvement. We should aim to do considerably better in the data we collect on patients who suffer complications, and that is why I urge Members to support the amendment.
The doctor with the patient should write up the notes, including the times at which they reacted negatively to the procedure, the amount of medication that they consumed, any side effects and any action taken. That is good practice. In other jurisdictions there has been poor record keeping, as I mentioned, when things have not gone according to plan. We do not fully understand what happened in those instances or, more generally, the prevalence of complications in those jurisdictions. That information will be vital if further interventions are required, including emergency care.
Clause 22 deals with two situations: if the person decides not to take the substance or if the procedure fails—the phrase “Other matters to be recorded in medical records” seems a rather innocuous title for a clause that deals with such situations. In fact, I think that is the only mention of the procedure failing in the whole Bill. However, the clause, and amendment 380, simply require the co-ordinating doctor to notify the commissioner that it has happened as soon as practicable. Do we have any sense of when the doctor should judge the procedure to have failed? I would be grateful if the Minister or the promoter could offer a definition of procedural failure. What does that actually mean?
That question arises in other jurisdictions that have assisted dying laws. A 2019 paper by the Canadian Association of MAiD Assessors and Providers said:
“There is no clear cut-off for what constitutes ‘delayed time to death’ or ‘failed oral MAID’.”
At what point does a delayed time to death yield to failure? That question is not just abstract for us; it is a philosophical question in other contexts, but we are required to answer it. That paper goes on to suggest that
“clinicians should decide with patients in advance at what point they will consider inserting an IV and completing the provision”,
which is a rather euphemistic term but we know what it means. That is legal in Canada, but it would not be here, so what happens?
In written evidence, Dr Alexandra Mullock, who is a senior lecturer in medical law and co-director of the Centre for Social Ethics and Policy at the University of Manchester, pointed out:
“The Bill is silent on the precise obligations of the doctor if the procedure fails.”
Clause 18(9)(a)(ii) states that the doctor must remain with the person, but what the doctor should be permitted to do, either in relation to aiding recovery or supporting the person to die after the initial attempt has failed, is unclear. She said:
“During my work with the Nuffield Citizen’s Jury, the issue of what happens if the drugs do not end the person’s life was raised within the evidence presented to the jury, and this became a point of concern for several jurors.”
She also said:
“By not addressing this question within the Bill, it allows doctors to exercise clinical discretion, however, it is arguably legally and ethically preferable to clarify the position and address public concern by including a clause that covers this problem.”
I hope that is helpful.
I will end by referencing the hon. Member for York Central, who tabled amendment 440 and made the case very powerfully. She said that should the procedure fail, the need for record keeping is of significant importance, as with all medical record keeping. I have already said that, but we cannot have too much of the hon. Member for York Central.
I turn to amendment 440. As I have just mentioned, clause 22 provides that the co-ordinating doctor is required either to record in the person’s medical records or inform a medical practitioner registered at that person’s GP practice if the person has decided not to take the substance or the procedure has failed.
The amendment increases the requirements on the co-ordinating doctor to document in such cases any interventions made by a medical practitioner and the timing of those interventions. The requirement on the co-ordinating doctor to record interventions following a failed procedure is open-ended in time, which could lead to operational challenges. For example, the co-ordinating doctor would remain obliged to record the medical interventions made by others in response to the procedure failing, even if those interventions took place weeks or months after the event itself. I hope that those observations have been helpful to the Committee.
Amendment 380 agreed to.
Amendment proposed: 440, in clause 22, page 14, line 34, at end insert—
“(4) For the purposes of subsections (2) and (3)(b), the information recorded must include—
(a) any interventions made by a medical practitioner in response to the procedure failing, and
(b) the timing of those interventions.” —(Sean Woodcock.)
This amendment would specify certain information to be recorded under section 22 when the procedure fails.
Question put, That the amendment be made.
On resuming—
Clause 22, as amended, ordered to stand part of the Bill.
Clause 23
No obligation to provide assistance etc
“(1) No individual is under any duty (whether arising from any contract, statute or otherwise) to be involved, directly or indirectly, in the provision of assistance in accordance with this Act.
(1A) In particular, no individual is under any duty (whether arising from any contract, statute or otherwise) to—
(a) provide information about assisted dying;
(b) participate in an initial discussion;
(c) participate in the request and assessment process;
(d) supply, prescribe or administer an approved substance;
(e) be present at the time of administration of an approved substance; or
(f) dispense a prescription of an approved substance.
(1B) Nothing in subsections (1) or (1A) of this section shall affect any duty to—
(a) signpost someone to where they can obtain information about assisted dying (under section 4(5) or otherwise);
(b) perform acts of a clerical, secretarial, or ancillary nature; or
(c) perform any acts necessary to save the life of or to prevent grave injury to a person.”
This amendment would expand the provision of Clause 23(1) to all individuals and clarify the activities in which they are not obliged to participate.
Amendment 483, in clause 23, page 15, line 5, after “assistance” insert
“, or in any activity closely related to the provision of assistance,”
This amendment would widen the range of activities which medical practitioners and other healthcare providers are not under an obligation to provide to include activities closely related to the provision of assistance under the Act.
Amendment 484, in clause 23, page 15, line 8, after “Act” insert
“, or in any activity closely related to the provision of assistance under this Act,”
Amendment 441, in clause 23, page 15, line 9, at end insert—
“(3) There is no obligation on any care home or hospice regulated by the Care Quality Commission or the Care Inspectorate Wales to permit the provision of assistance under this Act on their premises.”
This amendment prevents there being any obligation on a care home or hospice which is regulated in England or Wales to permit the provision of assistance under the Act on their premises.
Amendment 481, in clause 23, page 15, line 9, at end insert—
“(3) Nothing in subsection (2)—
(a) prevents an employer who has chosen not to participate in the provision of assistance in accordance with this Act from prohibiting their employees from providing such assistance in the course of their employment with that employer, or
(b) prevents an employer from specifying occupational requirements in relation to the provision of assistance in accordance with this Act in accordance with Schedule 9 of the Equality Act when hiring employees.”
This amendment ensures that employees cannot provide assisted dying against the wishes of their employers and that employers can still rely, in appropriate cases, on the occupational requirements of the Equality Act to either require employees to provide or not to provide assisted dying.
New clause 22—No obligation for occupiers and operators of premises—
“(1) Any individual, business, organisation, or association who occupies or operates premises has the right to refuse to permit the self-administration of an approved substance on their premises.
(2) Nothing in subsection (1) confers any right on anyone with an interest in the land but who is not occupying or operating those premises.”
This new clause would mean that the owners or occupiers of premises — but not landlords not currently in occupation — are not obliged to permit the self-administration of approved substances on their premises.
New clause 23—No detriment for care home or hospice not providing assistance—
“(1) No regulated care home or hospice shall be subject to any detriment by a public authority as a result of not—
(a) providing assistance in accordance with this Act, or
(b) permitting such assistance to take place on their premises.
(2) No funding given by a public authority to a regulated care home or hospice can be conditional on that care home or hospice—
(a) providing assistance in accordance with this Act, or
(b) permitting such assistance to take place on their premises.”
This new clause would mean that regulated care homes and hospices cannot be subject to any detriment for not providing or permitting assistance in accordance with this Act, and that their funding cannot be conditional on them providing or permitting such assistance.
Clause stand part.
As drafted, the conscience clause protects against any duty to
“participate in the provision of assistance in accordance with this Act.”
My concern is that, as written, and especially in the light of the amendments tabled by the hon. Member for Spen Valley to clauses 24 and 25, it is very likely to be interpreted as limited to the final act of assistance. The Committee does not need to take my word for it, because the British Medical Association said in its written evidence to us:
“we are concerned that using the word ‘assistance’ in the titles of Clauses 18 + 19 could be interpreted (by a court, for example) as narrowing the right to refuse in Clause 23(1). We would be very concerned if doctors only had the right to refuse to carry out the activities detailed in Clauses 18 + 19 which are the process of providing the approved substance for the individual to self-administer and remaining with the patient until they have died.”
It goes on to say:
“We urge the committee to review the use of the word ‘assistance’ throughout the Bill; Clauses 18 + 19 might be better titled as ‘Providing assisted dying’ and ‘Authorising another doctor to provide assisted dying’, or similar, to avoid confusion over multiple uses of (and meanings associated with) ‘assistance’ in the Bill. It is essential that the right to refuse is not (unintentionally) narrowed in any way.”
The BMA makes a powerful point and is clear that the conscience clause must cover not just the final act but the entire process, with the exception of the signposting duty in clause 4(5).
As Members will recall, the BMA opposed clause 4(5) as originally formulated, as it imposed a duty to refer if the original doctor did not want to participate in the assisted death procedure. The Royal Pharmaceutical Society makes a similar point in its further written evidence to us:
“We would urge the Bill Committee to make it clear that clauses on conscientious objection (23) and criminal liability (24) extend to all activities associated with assisted dying, and are not limited to a narrower interpretation of the ‘provision of assistance’. Pharmacists, other health professionals , and indeed wider staff, should not unknowingly be involved in supporting an assisted dying procedure, directly or indirectly, without their consent.”
I note that the promoter has tabled amendments to clauses 24 and 25 to make it clear that the exemption from both criminal and civil liability covers the provision of assistance under the Bill. Clause 23 also refers to assistance. Additionally, there is reference to a person “performing” any other function under the Bill. Clauses 24 and 25 cover liability, and refer to the provision of assistance and performing any other function under the Bill, but clause 23—the conscience clause—refers only to the former: the provision of assistance. That will likely be interpreted by the courts as Parliament having intended a narrow construction of clause 23. As the expert medical bodies are telling us, that is not acceptable. Health professionals and indeed anyone else must be able to opt out of any functions under the Bill.
The Royal College of Psychiatrists found that 58% of its members would not be willing to participate as a medical professional in an assisted dying service, including determinations of capacity or assessments of mental disorder, if it became law in the UK. That is well away from the provision of assistance as we understand it from the Bill.
The Royal College of Nursing told us in written evidence that the protection of the conscience clause
“should extend to indirect involvement, such as administrative tasks or referrals, to ensure all professionals are supported in line with their personal and professional values.”
There is widespread support among our medical institutions for a wide conscience clause that covers everything under the Bill and is not limited to the final act: the administration of the drugs.
The second issue is who benefits from the conscience clause. Clause 23 limits it to registered medical practitioners and other health professionals. A “health professional” is defined in clause 40 as:
“a) a registered medical practitioner;
(b) a registered nurse;
(c) a registered pharmacist or a registered pharmacy technician”.
One set of professionals is omitted from that list: social workers. Under amendments 422 and 423 to clause 9, which we passed, social care professionals have a role in the process. The British Association of Social Workers, in its written evidence, said:
“social workers have duties in relation to both mental capacity and adult safeguarding, so it is concerning that legal protection in Section 23 of the Bill is given to healthcare professionals but not to social workers. All professionals that could potentially be involved with assisted dying, such as social workers, should be able to conscientiously object to participating in work that could reasonably be argued would be contributing to an assisted death.”
I am sure that other professionals who may be called upon to give an opinion on matters pertaining to the processes in the Bill would feel the same way.
Members may be interested to know that the conscience clause in the Abortion Act 1967 simply says:
“no person shall be under any duty”
to be involved, rather than no registered medical practitioner, so there is a difference. The same goes for the conscience clauses under the Human Fertilisation and Embryology Act 2008. Baroness Meacher’s 2021 Assisted Dying Bill also referred to a person rather than a registered medical practitioner, as did Lord Falconer’s 2024 Assisted Dying for Terminally Ill Adults Bill, so I am not sure that the limitation to registered medical practitioners and health professionals can be justified. It is not the precedent from similar legislation.
My amendment addresses all those mischiefs and provides that the benefit of the conscience clause be for all individuals and not limited to health professionals. That accommodates the request of the Royal Pharmaceutical Society on the importance of protecting wider staff and the British Association of Social Workers. It also fits with the precedents that I have described in the Abortion Act and the Human Fertilisation and Embryology Act.
My amendments provide a non-exhaustive list of activities that would be protected. The list was roughly adapted from the legislation in Victoria, Australia, so I hope Members can see that I am following precedents from elsewhere. If amendment 480 is passed and the list is in need of refinement or drafting changes, I would of course be happy to work with the Government on a tidying-up amendment at a later stage. The amendment would ensure that all professionals—indeed, all individuals —are properly protected and would not become involved in assisted dying if they did not want to. None the less, it contains three exceptions, which I will briefly explain.
The first exception is to ensure consistency with clause 4(5), as amended. Members will recall that that clause imposed a duty on a doctor who did not want to have a preliminary discussion to refer the person to another doctor. We have amended the clause to now say that the doctor
“must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”
The exception makes it clear that clause 23 cannot allow one to avoid that signposting duty. A person cannot say, “I am protected by this amendment from fulfilling the obligations under clause 4 to signpost somebody to where they can get the information they require.”
The second exception concerns tasks of a clerical, secretarial or ancillary nature. The presence of that exception means that the Royal College of Nursing’s demand for clause 23 also to cover administrative tasks is not fully met. I regret that I was not able to go that far, but I will explain why. In a 1989 case, Janaway vs. Salford Health Authority, a medical secretary claimed that the conscience clause under the Abortion Act meant that she was not required to type out a letter on behalf of the doctor she was working for, referring a patient for abortion. Both the Court of Appeal and the House of Lords, albeit for different reasons, concluded that such types of secretarial tasks were not protected by the conscience clause in the Abortion Act.
That decision was applied about 10 years ago in the Supreme Court case of Greater Glasgow Health Board vs. Doogan and another, in which it was held that the conscience clause did not protect an individual from having to carry out ancillary tasks such as managing the rota of a labour ward where abortions were performed. Interestingly, I note that in the Doogan case, the Royal College of Nursing took the view that the conscience clause should be narrowly interpreted, whereas for this Bill it seems to be asking for a wider exception that covers all administrative tasks.
Given that assisted dying is far more controversial than abortion among health professionals, I can see a case for a wider conscience clause in this Bill, but to maximise the chances that my amendments are accepted I have compromised and tried to match the precedent of the Abortion Act and the case law in Janaway. That is why the second exception is as it is. Again, if the drafting is not perfect and we can make improvements through a tidying-up amendment, I would be happy to work with the Government or the hon. Member for Spen Valley.
The third and final exception is for acts necessary to save someone’s life or health. The need for that exception arises because no one is under any duty to be present when self-administration happens but, if things go wrong, emergency services or other help might be required. It is important that that help is provided; there should not be a conscience exception to it. I hope that exception is uncontroversial. Obviously, if somebody requires emergency help, we expect all medical professionals—all people— to jump to it. For the sake of clarity, there can be no exception under the amendment in those circumstances.
I sincerely hope that this amendment to the conscience clause, which reflects the requests we have had from the professionals who will have to deliver this service, will be accepted by the Committee. If it is not, I wish to indicate my support for amendment 483.
New clause 22, unlike my amendment to the conscience clause, is only about the final act. It makes it clear that the occupier or operator of a premise has the right to refuse its use for the final act of self-administration. That applies regardless of who the occupier or operator is; it is not limited to hospices, but it certainly includes them. So anybody occupying or operating premises should be able to determine that they may not be used for assisted dying services.
However, the new clause does not grant landlords or freeholders any right to insist that their property not be used. For example, the Church estates commissioners could not use it to prevent assisted dying from happening on land for which they own the freehold or land that they rent out. The same would be true of any other landlord, so if somebody lived in a rented property and wanted to die at home, this provision would not give their landlord any right to prevent that. It is instead focused on protecting the rights of those who occupy or operate premises. I hope I have explained the value of the new clause and the amendments.
I hope I have helped the hon. Gentleman to understand the circumstances in which this provision would apply.
On the hon. Member for Spen Valley’s suggestion about people who have made a particular care home their home in the last years of their lives, I would suggest that care homes that refuse assisted dying would make it very clear that they do not want to participate in it, and people who would like, or would consider that they might one day want, to have an assisted death would not choose those care homes. I recognise that this is difficult.
I am intrigued by this notion. I fully appreciate and support the idea that individuals should be able to opt out from the process and not participate, but by what means would the view of these institutions be ascertained? Would it be the view of the management? My hon. Friend said that other residents might be disturbed, so will there be a residents’ vote? How will these organisations come to a collective view? Practically, the Bill refers to individuals—it is an easy one for us that people do not have to participate; we have talked about the wider application of that and the hon. Member for Spen Valley says she is willing—but I do not understand how the collective view of the organisation would be reached.
My right hon. Friend asks how the collective will of the community would be ascertained. It would not be. I am proposing that the operator of the premises would have the right to determine whether assisted dying could take place there or not. I am suggesting that the likelihood with a care home is that the operator would, on behalf of residents and staff, say, “We’re not doing that here.” If they wanted to—if there was a pro-assisted dying care home—it would then be a question for residents and staff whether they wanted to live or work there.
I am simply attempting to insist on the right of property—or the right of occupation, I should say, because it is a question not just for the freeholder but for the occupier of the premises. In the case of a house or a business premises, that would be the tenant. Whoever operates the business or the activity of the premises should have the right to conclude that they are not going to have assisted dying in their premises.
I implore Committee members to expand their scope beyond the single individual who would be the subject of the application, and to consider the community they live in.
I am very sympathetic to the views put forward by my hon. Friend the Member for Spen Valley about people being able to conscientiously object in principle, but the way amendment 480 is written is difficult. For me, it is about the word “indirectly”. That could lead to even more ambiguity that would make it more tricky to facilitate the provision. For example, trying to list some activities but not all of them has potentially left some gaps. A gardener in a care home might be “indirectly” linked—will they be able to say that they are not going to mow the lawn? We will get ourselves in a difficult place, and I would welcome further work being done to recognise the point the hon. Member for East Wiltshire is trying to make, because of that ambiguity.
Trying to establish a point of principle in new clause 22 could lead to some difficulties. It reads:
“Any individual, business, organisation, or association who occupies or operates premises has the right to refuse to permit the self-administration of an approved substance on their premises.”
Perhaps it is about the interpretation of that and how we read it, but any individual who occupies a premises could refuse permission. Does that mean that a husband could deny a wife the opportunity to die at home when that is where she has been treated for a terminal illness, where all her help has been administered and where she would like to die? Again, it is about whether the drafting might have unintended consequences when we want to have compassion and choice for the individual at the heart of the Bill.
Similarly, could an organisation or association with shared ownership of a property—a form of tenure that many people now have—object to this route for someone who is after all in their own home, as they own part of it? There are some difficulties in the new clause, and by trying to establish one principle, it is making things more difficult and open to challenge. We are trying to make law that is good, even if we do not agree with it.
On her second point, again we have—
Some of the amendments were tabled by the hon. Member for Reigate, and I want to speak to amendment 481, which is of a similar ilk. There is no obligation on an employer to provide assistance, and we are all absolutely bought into that, so that is not a bad thing. Amendment 481 would avoid preventing
“an employer who has chosen not to participate in the provision of assistance…from prohibiting their…employees from providing such assistance in the course of their employment with that employer”.
I have some questions on that. People’s working lives are varied and often they may not have just one employer, so there is a slight ambiguity—I hope the Committee will bear with me—if employer A exercises a right to prohibit under the amendment, and someone works for employer A but also for employer B, which is okay with people participating in a legal act under this legislation. Let me provide a bit of clarity with the example of a locum doctor. If a doctor is employed by employer A, but also does some locum work for employer B, does that mean that employer A could say the doctor was not permitted to carry out legitimate employment for employer B?
Similarly, I was interested in the point regarding the genuine “occupational requirements”, and how that is written and interpreted. There are reasons for
“specifying occupational requirements in relation to the provision of assistance in accordance with this Act in accordance with Schedule 9 of the Equality Act when hiring employees”
but that occupational requirement means that an employer could discriminate on the basis of a protected characteristic, if that requirement is essential for the job and
“a proportionate means of achieving a legitimate aim”.
I am a little concerned as to the interpretation. In respect of which protected characteristic would they or would they not be recruiting? We need some legal input to clarify that, because we cannot make assumptions about people’s protected characteristics, particularly in recruitment.
I wish to speak to amendment 481 and new clause 23 in my name. I welcome clause 23, which makes it clear that no registered practitioner or other health professional is under any duty to participate in the provision of an assisted death. I believe, however, that it can be further bolstered by the amendments that my hon. Friend the Member for East Wiltshire has spoken to, including my amendment 481 and new clause 23.
The amendments concern a practical issue that would face hospices and care homes from day one of the legislation coming into force—namely, how they can continue to operate effectively with a huge diversity of views among staff members. We will all remember Sarah Cox’s oral evidence to the Committee. She cited a 2023 Royal College of Physicians survey in which 43% of Association for Palliative Medicine members said that
“if assisted dying were implemented within their organisation, they would have to leave.”
Dr Cox said that if this Bill became law, it would have
“a massive impact on palliative care, in terms of its potential to develop both our funding and our workforce, who are really concerned about this.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 70, Q83.]
In written evidence, the Association for Palliative Medicine said:
“The APM recognises the importance of organisations also being able to conscientiously object to involvement in assisted dying. This is essential for the organisation and also for healthcare professionals choosing where to work with their conscience. By not having robust conscientious objection at all levels, the Bill risks imposing harm on health or social care practitioners, violating their autonomy and risking an exodus of skilled and valuable health and social care practitioners.”
There will be many people in the sector who support and want to participate in assisted dying, but it is likely that some institutions and organisations will want to have a clear policy of not providing assisted dying. Some nurses, doctors and other professionals will want to work only in that kind of organisation. Either we carve out a space for them, or we risk losing some very dedicated people from end-of-life care.
I am trying, through amendment 481, to carve out that space. It allows an employer—a hospice, for instance—that has a blanket policy of not offering or supporting assisted dying to require their employees to adhere to their policy. My amendment clarifies that clause 23(2) does not make blanket policies impossible to enforce: a care home or hospice can prohibit its employees from participating in the provision of assisted dying. They can still believe whatever they want to believe, but it sets out clearly what is expected if they are employed in those premises.
I think my right hon. Friend asked me another question. I do not know if he wants to intervene in relation to public funds—
Amendment 481 is intended to answer the BMA’s request for such a carve-out. In written evidence, the BMA says of clause 23 that
“there would need to be scope for some exceptions to allow, for example, an assisted dying service to only employ people willing to actively participate in the provision of assisted dying, without falling foul of this provision.”
Presumably this freedom would apply in both directions.
My amendment allows any institution or organisation, whatever its stance, the scope to set its policy and bind its employees accordingly. This also works in favour of those institutions or organisations that want to offer assisted dying. It ensures that they can make sure that they do not employ a load of people who are against assisted dying. Would you want Danny Kruger working in one of those organisations? Sorry, Mr Dowd— I meant my hon. Friend the Member for East Wiltshire. I am just saying that it benefits both sides.
I want to make a wider point. The point we are trying to make about the amendments is that very few people will move into these organisations and live in them in the expectation that they will get a terminal disease. They will move in in their twilight years, whether it is an almshouse or a care home, for retirement purposes or other reasons—
I echo what my hon. Friend the Member for East Wiltshire said about the definition of “assistance” in clause 23. If this legislation is to genuinely respect the preferences of doctors and other professionals, it is essential that “assistance” is read as including the matters in amendment 480 covering non-medical practitioners, too. I support that amendment, and what I am going to say is based on its definition of “assistance”.
My amendment, it is important to say, works both ways. A care home or hospice can state that all employees must be willing to assist. We agreed to amendment 341, which allows individuals to opt out on conscience grounds. My amendment 481 gives institutions and organisations the same latitude. It opens the way to three kinds of institution: those that provide assisted dying as a matter of policy, those that will not provide it as a matter of policy, and those with no fixed policy, where some employees will assist and some will not. All those different approaches should be respected and supported.
The legal basis for this is found in schedule 9 to the Equality Act 2010, which allows an employer to specify a “genuine occupational requirement”. A company can require a particular protected characteristic, as long as it is a work-related requirement and the requirement is a proportionate means of achieving a legitimate aim. The Equality and Human Rights Commission gives an example: a humanist organisation that promotes humanist philosophy and principles would probably be able to apply an occupational requirement for its chief executive to be a humanist. In this case, an organisation providing end-of-life care and with a blanket policy in either direction would not be found in breach of the Equality Act’s protection of beliefs. In healthcare, there is the obvious precedent of abortion. The British Pregnancy Advisory Service, as an abortion provider, is allowed to specify that employees must support its position.
Without this amendment, we are looking at a legal and ethical minefield. If a hospice has a policy of helping with assisted dying requests and a staff member refuses to refer a patient to a doctor, can that staff member be sacked, or are they protected by clause 23? Surely we want to avoid the situation arising in the first place, by ensuring that employers can make clear their requirements on this front at the hiring stage.
Conversely, what if a hospice has a policy of not participating in assisted dying? Many hospices may want to have such a policy, to reassure their patients on this front and provide a safe space for those who need it. In written evidence, Rowcroft hospice says:
“Some patients may fear discussing pain and suffering in case assisted dying is suggested as an option.”
According to an article in Annals of Palliative Medicine, this is a major concern in Oregon. One nurse is quoted as saying:
“there’s all this advice about how to get information on Death with Dignity…already there is an attitude among many of our clients that ‘if I go into hospice, they’re going to kill me because that’s what a hospice does’”.
Likewise, a healthcare professional in Australia is cited in one study as saying:
“It’s affecting us in palliative medicine, more than we would like and more than it should because of the assumption that because we specialise in end-of-life care therefore, this is for us. And so, the general perception amongst medical practitioners, the health community and the general public is that this is our thing. And so, for a lot of us, we’re saying, no, this is not our thing.”
Clearly, some hospices will want to have an explicit policy that assisted dying is not their thing, and they should have the right to do that. But what if an employee at that kind of hospice wants to help a patient with the assisted dying process? What if, for instance, a hospice doctor volunteers to do one of the assessments? That will obviously compromise the hospice’s policy, but are they in breach of the Equality Act 2010 if they only hire doctors who share that institution’s view of assisted dying? Again, without my amendment, it is not clear what the law allows. Amendment 441, in the name of the hon. Member for York Central, has a similar aim and would further clarify the legal position for institutions, so I am glad to support that, too.
This kind of institutional opt-out is, I believe, standard practice in US states that have adopted assisted dying. California’s law includes the following provision:
“a health care entity may prohibit its employees, independent contractors, or other persons or entities, including health care providers, from participating under”
this legislation
“while on premises owned or under the management or direct control of that health care entity or while acting within the course and scope of any employment by, or contract with, the entity.”
There is also a good model in New Zealand, where the High Court has ruled that institutions can opt out. Hospice New Zealand, the organisation representing all hospice services in the country, sought a declaratory judgment because of exactly the kind of confusions that I have described. In its judgment, the High Court of New Zealand agreed that the ambiguity about institutional opt-outs was
“causing confusion amongst those involved in palliative care and more generally.”
The Court found that New Zealand’s assisted dying law
“does not require hospices or other organisations to provide assisted dying services. They are entitled to choose not to provide these services. This does not depend on a hospice or other organisation having a conscientious objection, although that may often be the reason…Hospices or other organisations that choose not to offer assisted dying services may employ or engage health practitioners on the basis that these services are not provided by the hospices or organisations”.
As a result, New Zealand hospices can set their own policy on whether to provide assisted dying. Sinéad Donnelly, professor of palliative care at the University of Otago, says that this judgment has proved very helpful to the hospice sector:
“this has proven pivotal in retaining staff at hospices, many of whom would no longer be willing to work there if the assisted dying doctor or nurse practitioners were given access to the hospice to end a patient’s life.”
Dr Siwan Seaman, a hospice doctor, says in written evidence:
“I have liaised with a Medical Director of a hospice in New Zealand…The Medical Director in New Zealand believed that without the organisation-level conscientious objection that the hospice movement in New Zealand would have been under even more strain and look very different now.”
Dr Seaman says that if we want the quality of palliative care provision across England and Wales to continue to improve,
“the bill has to be amended to allow specialist palliative care services such as hospices to be separated from assisted dying processes.”
I hope Members will agree that amendment 481 seeks to make it easier for hospices and other institutions to deliver on their policy, whatever it may be, by ensuring that they can require their employees to comply. It would also leave space for palliative care to flourish by not imposing burdens on people who work in the sector.
Let me turn to new clause 23. I have talked about one challenge for the hospice sector, but it is not the only challenge. The past few years have been a challenging time, given the rising cost of living and rising demand for hospice services. Hospices play a vital role in local communities by providing high-quality, compassionate care at the end of life, and I pay tribute to their work. They face huge financial pressures that put their essential work in jeopardy and could lead to unprecedented closures.
In oral evidence, Dr Cox said:
“The first thing to say is that palliative care is currently inadequate. Not only do we need to ensure that it does not decline, but we need to massively improve it so that this Bill offers patients a real choice. We know that effective palliative care can change a terminally ill person’s point of view from wanting to die to wanting to live.
We also know that 25% of people who die in this country do not have the palliative care they need. That is more than 100,000 people a year. Providing palliative care, which might make their lives better, reduce their suffering and even change their perspective on whether they would want assisted dying, should be our priority in reducing suffering in this group.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 70, Q84.]
I also remind the Committee of what Dr Clarke said:
“There are hospitals, and mine is one currently, where we do not even have a 24/7 palliative care service face to face. Every night in my hospital, and every weekend from Friday to Monday, you cannot see a palliative care nurse or doctor, despite the fact that for a number of years that has been an NHS standard. That is an absolute disgrace and it shows how little people who are dying are truly cared for in a civilised society.
It does not necessarily have anything to do with assisted dying, except that if we do not address that simultaneously, some of those people will “choose” to end their life, because we as a society do not care about them enough to give them the care that might make life worth living. Surely that is a travesty for Britain.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 76-77, Q94.]
I remember being quite moved when she said that.
Although we are limited in what can be done through the Bill to rectify funding for palliative care, we can ensure that it is not further impacted detrimentally by the introduction of assisted dying. New clause 23 seeks to protect hospices from further funding pressures arising specifically from the Bill, because there is a risk that public funding becomes dependent on offering assisted dying. The new clause would ensure that public authorities could not make funding conditional on the provision of assisted dying, and could not subject care homes or hospices to any other detriment merely on the grounds that they do not permit such assistance to take place on their premises.
The new clause reflects a serious concern in the hospice sector. St Gemma’s hospice in Leeds warns in written evidence:
“If compliance with assisted dying provision becomes a condition for NHS funding, institutions like St. Gemma’s may have no alternative but to cease operations entirely given its reliance on NHS funding for its financial sustainability. Such closures would have devastating consequences for the communities we serve, eliminating high-quality palliative and hospice care options for thousands of terminally ill patients annually. If patients in our catchment area could not be cared for by St Gemma’s, this would, at a minimum, reduce the degree of choice for many and put at risk the availability of palliative care across large parts of the city. Patients would be admitted to hospital or would die at home in a way that is difficult to reconcile with the palliative care ethos of choice, quality of life and quality of dying. This would increase demand on a health and care system that is already under unprecedented pressure, leading to devastating outcomes.”
That is a real possibility, as shown by the fate of the Irene Thomas hospice in British Columbia. It was known as a sanctuary for dying people who did not want to be in a setting offering assisted dying, but the province adopted a policy that required hospices to provide assisted dying if they had over 50% funded beds. After the hospice board voted not to offer assisted dying, its 1.5 million Canadian dollars of public funding was cut, its clinical staff were laid off and it was taken over by the regional health authority.
We should be honest about the possible threat to palliative care. This is a much-debated subject, so I will lay out in some detail the evidence that assisted dying may be detrimental to palliative care. It is true that the Health and Social Care Committee concluded that palliative care did not deteriorate where assisted dying was introduced, but a recent report by Professor David Jones looked at the issue more forensically and found:
“This conclusion, however, was based on the selective evidence that the Committee received from respondents, much of which was irrelevant, outdated, or speculative. In contrast, a more complete review of better and more recent evidence shows ‘clear indications in several jurisdictions of palliative and end-of-life care deteriorating in quality and provision following the introduction of AD / AS, and a negative impact on some healthcare professionals.’”
In his study, Professor Jones found that some of the evidence on which that Committee based its conclusions was highly unreliable. For instance, it was partly based on Canada committing to spend 6 billion Canadian dollars on palliative care and home care over 10 years at the time that assisted dying was legalised. The money was not ringfenced, however, so five years later, only 184 million Canadian dollars could be shown to have been allocated to palliative care. Other evidence was also out of date. For instance, Belgium’s spending on palliative care was cited, but that covered only 2002 to 2011, and that spending appears not to have been sustained.
In his lengthy analysis, Professor Jones cites a wealth of evidence for his conclusion. He examines the data and finds that, between 2012 and 2019, European countries without assisted dying increased palliative care provision more than three times more than countries with assisted dying. Between 2015 and 2022, Belgium, Canada and the United States fell out of the top quartile in the world ranking for quality of death and dying, while the United Kingdom remains in first place. Between 2015 and 2019, the number of palliative care teams in hospitals increased by 3.2% in US states with assisted dying, but by 9.4% in non-assisted dying states.
Clearly, there is a competition for resources between palliative care and assisted dying. In 2023, for instance, New South Wales cut spending plans by 249 million Australian dollars after increasing palliative care spending.
When there was an outcry, the Premier of New South Wales told the press that one reason for that cut in spending was assisted dying. His Government had to find 98 million Australian dollars to pay for the voluntary assisted dying regime, because the previous Government had introduced it without funding. In oral evidence, Dr Cox said that
“although palliative care services have improved in those countries where assisted dying has been implemented, they have improved three times more in countries where assisted dying has not been implemented. The evidence from that study shows that the implementation of assisted dying is impeding the development of palliative care services.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 70, Q83.]
This is also about competition for time and resources. One palliative care provider in Ontario has been cited as saying that
“when a patient is requesting MAID [Medical Assistance in Dying], most of the resources have been sucked up by that one case and it’s all everyone’s talking about and they’re rushing to get stuff done…everyone from admin down to the bedside nurse is focusing on MAID…And all of the high-quality palliative care that we do falls by the wayside for the other patients.”
One academic study found that
“in Ontario, some palliative care nurses were tasked with administration and co-ordination of MAiD which has been taking up an increasing proportion of their roles—to the point that nurses have left their jobs because they were not able to provide palliative care.”
In oral evidence, Dr Cox also said:
“It is unclear how this is going to be funded. It looks as if it is going to be within healthcare, and if so, there will inevitably be competition with other aspects of healthcare, including palliative care, for those limited resources. There are finite numbers of doctors, nurses and side rooms in hospitals. If palliative care and assisted dying were funded from the same pot, I think there would be a massive detrimental effect on palliative care because we would be in competition for a limited resource.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 70, Q83.]
I have outlined this at length—I thank Members for their patience—because how we vote on these amendments could have enormous consequences for the palliative care sector. At the moment, it is world-leading, but that does not mean there is not huge room for improvement or that it will not be affected by the same pressures as in other jurisdictions. Amendment 481 would institute a common-sense change that the British Medical Association has suggested. New clause 23 would protect the sector from unintended consequences and unfair funding cuts. I urge Members to support both.
Ordered, That the debate be now adjourned.—(Bambos Charalambous.)
TIAB 424 Steven Illingworth
TIAB 425 Dignitas
TIAB 426 Michael Romberg
TIAB 427 Peter Scott
TIAB 428 Institute of Our Lady of Mercy (Sisters of Mercy)
TIAB 429 Dr Amanda Harlow MBChB, specialist doctor in substance misuse
TIAB 430 Professor Emyr Lewis, Emeritus Professor, Aberystwyth University (supplementary)
Contains Parliamentary information licensed under the Open Parliament Licence v3.0.