Baby Loss
Sean Woodcock Excerpts(10 months ago)
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Sean Woodcock (Banbury) (Lab)
It is a real privilege to have the opportunity to speak in this debate, particularly after so many powerful and profound speeches and interventions from Members across the House. I want to share the testimony of a constituent who has endured an experience that affects many families, yet receives very little attention: hypoxic-ischemic encephalopathy, or HIE. Her son survived a HIE event during his birth. HIE is a brain injury caused by a lack of oxygen or blood flow, which can lead to developmental delays, intellectual and physical disabilities and—tragically—in one in five cases, death. Some of these complications can remain hidden until school age.
My constituent had never heard of HIE at the time, nor had I prior to her contacting me, but it is an all-too-common condition that affects three to four births out of every 1,000. In her son’s case, it resulted in mild cerebral palsy. She was supported by a wonderful charity called Peeps, which highlights that families affected by HIE often feel that they do not belong in a baby loss space. Many of those families experience birth trauma, PTSD and complicated grief. While charities such as Peeps offer support to anybody affected, NHS mental health support can often be restricted to just the mother. This leaves fathers and partners—who are also deeply affected—to cope alone. Support must and should be for the whole family.
Peeps also emphasises the significant gaps in long-term support, especially for families whose children survive but face lifelong, severe disabilities. They are left to navigate complex needs for years after the initial intensive care ends. The trauma is compounded for families whose event may have been avoidable. A study in Finland between 2005 and 2024 suggested that a fifth of all such cases could have been prevented, or at least could have benefited from preventive measures. This compounds the trauma of affected families and underscores the importance of absolute honesty and systemic learning in our NHS services.
Additionally, HIE is not always recorded consistently in NHS systems or statistics, making it harder to advocate for policy change and obscuring potential disparities in outcomes, which we know exist for stillbirths and neonatal deaths. We must listen to brave parents such as my constituent and fantastic charities such as Peeps and ensure that HIE is no longer misunderstood or unheard of in conversations about baby loss. We owe these families recognition, compassionate care, and a commitment to address the lack of consistent data that makes it so hard for them to advocate for change.
Madam Deputy Speaker (Caroline Nokes)
Order. That brings us to the Front-Bench contributions, which will perhaps be in the region of eight minutes each.
Hospitals
Sean Woodcock Excerpts(1 year, 3 months ago)
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Layla Moran (Oxford West and Abingdon) (LD)
Lord Darzi’s independent investigation clearly set out the impact that “capital starvation” has had on the NHS in recent years, and the importance of capital spending to fixing the health service. The report highlighted substantial shortfalls in capital investment, combined with a tendency to raid capital budgets to cover in-year spending deficits, so I welcome today’s Liberal Democrat motion, which allows Parliament to highlight how important these issues are to the public. This is the second Liberal Democrat Opposition day, and it is the second time we have debated health and social care. It is because it is a priority for the country that it is a priority for us.
The Health and Social Care Committee has taken a keen interest in the new hospital programme. We have challenged the Government to maintain their capital spending and not fall into the traps of the past, when capital spending was redirected to fund day-to-day spending, so I was pleased to receive confirmation from the Department, and now from the Dispatch Box, that the Chancellor’s changes to the fiscal rules will stop future raids on the capital budget, or CDEL, to fund the day-to-day spending budget, or RDEL. That is hugely welcome. However, although the protection of capital budgets is reassuring, I remain concerned about the lack of transparency around how the funding is allocated by the Treasury.
The charge levelled at the Government is that funding is being funnelled into acute care to tackle waiting lists, at the expense of funding primary care, infrastructure and care in the community. Clearly, on current commitments, we will not see capital funding that is sufficient to meet anything close to the unfunded promises made by the Tories in 2020. Nevertheless, the principle of investing in our hospital infrastructure is good; money will be saved in the long run on maintenance and emergency repairs, as well as providing a better quality of care.
In the policy paper on the plan for implementing the new hospital programme, the Government stated that funding will reach only £3 billion in the early 2030s due to
“other key priorities in health spending, such as funding to enable the Secretary of State’s 3 shifts”.
That is good, but we need transparency around how decisions were made and which projects were chosen. In January, the Secretary of State provided the criteria by which the schemes were scored and funding was allocated, such as site constraints and maturity of planning permission, but it is disappointing that, as I understand it—I am willing to be corrected—the review was conducted without the involvement of the trust teams responsible for delivering the rebuilding programmes. As of last month, no trust with a new hospital programme scheme has been provided with the full details of how it scored specifically against the criteria.
The Health and Social Care Committee has asked how the Department is prioritising schemes and has not received a clear answer, so my question is very simple: in the interests of transparency, will the Secretary of State publish, for every single new hospital programme scheme that was subject to last year’s review, the details and findings of the Department’s assessment of them against each of the criteria that were published alongside his statement in the House of Commons on 20 January 2025? It is the very least that the schemes that felt deprioritised deserve, and we are hearing many examples of those from Members of different parties. I choose to believe that this outcome is inadvertent but, frankly, it just looks a bit shady. We have seen it happen before with the levelling-up money under the previous Government. The Public Accounts Committee, on which I know many Members have served, as have I, has a motto: sunlight is the best disinfectant. If the Government will not publish the detailed assessment, the Minister needs to explain why.
My local area, like so many others, has been affected by this issue. Last year I visited the John Radcliffe hospital, which serves much of Oxfordshire, and I saw at first hand how its capacity to deliver care is being severely constrained by the size and condition of the physical estate. We went to visit the old site of the neonatal intensive care unit, which had to be moved because the staff were worried about the ceiling literally coming down on sick children and on incubators. It was atrocious.
The John Radcliffe hospital wants to be world-leading. It is a specialist tertiary care hospital, which means it is able to perform very specialist surgery, and it wants a new building to do that in. When it put to the Government a bid for £28 million, it was rejected. Instead, it has gone out to seek private financing, and it will now cost the trust £46 million to deliver the exact same building. Would it not have made sense for the Government to allow the trust to borrow from the Government to build it, and then to pay the money back from its own reserves over time? Think what it could have done with that £18 million.
Sean Woodcock (Banbury) (Lab)
I know the John Radcliffe hospital, which serves some of my constituents. The hon. Lady has made a powerful case about the amount of money that has potentially been lost through this process. Would she, however, reflect on the role played by her party, particularly the right hon. Member for Kingston and Surbiton (Ed Davey), and the amount of money wasted on the disastrous top-down reorganisation of the NHS under the coalition Government?
Layla Moran
I have to say that that was quite a segue. We are focusing on the capital estate. We all know that there were problems with the Lansley reform. In fact, I welcome the fact that it is being unravelled, and I was pretty vocal about it at the time.
The savings the John Radcliffe could have realised might have been spent on hospital at home services and other ways to divert people away from coming into A&E in the first place.
Across the wider Oxford university hospitals NHS foundation trust, £100 million of backlog is deemed as high or significant risk. Pausing or delaying plans to rebuild hospitals is a false economy, and hospitals around the country, including the John Radcliffe, are overspending on maintenance as a result. That is not limited to our hospitals; we are also seeing it in GP practices, many of which date from well before 1948. I will declare an interest in that my own surgery—the Summertown health centre—is one of those practices. It is doing incredibly well, despite working out of a very old Victorian building. It is desperate for a new site, and it was deemed one of the top priorities for the ICB. I note that the Minister mentioned a figure of £102 million, but, frankly, that does not touch the sides.
As in the case of the John Radcliffe, the Summertown health centre is now going out to seek private finance, which it will find a way to pay back slowly over time. The Exchequer would not even have to lay out this money in advance, and even with inflation, the amount it would get back is less than what the health centre has to pay to do this with private finance. I ask the Government to think about this innovatively. It is not the same as the PFI. It is the Government using their own borrowing rules to allow investment in vital public services, and it makes no sense that they cannot do it.
When it comes to mental health services, we have the incredible Warneford hospital in Oxfordshire, and Warneford Park in Oxford will provide a new cutting-edge mental health hospital surrounded by a research and innovation hub. Groundbreaking research is planned on understanding brain health and discovering new drug therapies and new forms of treatment. This is a great vision, but it will cost £500 million. We do have private benefactors, including local businesses, willing to feed into it, but where is the funding pot for mental health trusts? They were excluded from the new hospital programme, and it is not at all clear where that kind of money may be found.
Sean Woodcock (Banbury) (Lab)
For years, my constituents in Banbury have lived with the consequences of a health system that has been allowed to fall apart bit by bit, service by service. Our mental health services, especially for children and adolescents, are severely under-resourced. Families are waiting far too long for help, even in the most serious cases. Our maternity unit in Banbury was downgraded under the Conservatives, so those having complex or emergency births have to travel to Oxford or Warwick, with all the risk that that brings, especially when delays are caused by our inadequate transport infrastructure. There is no overnight surgery or day-care surgery available locally, and patients fall through the cracks because of poorly co-ordinated services between Oxfordshire, Warwickshire and Northamptonshire.
Under the Conservatives, and with the support of the Liberal Democrats in coalition, money was diverted away from vital health services into a disastrous and unnecessary reorganisation of our national health service. The result is what we are seeing now: fragmented care, overstretched services and communities like Banbury being left behind. My constituents are not going to be pleased by Governments making promises that they cannot keep and when they have no realistic plan or funds to deliver them.
Helen Morgan
Multiple Government Members have made that point, but surely they can see that promising to build a hospital in a decade’s time when they may not be in power is a meaningless promise.
Sean Woodcock
I suggest that our decade of national renewal will ensure that the hospitals that we have promised will be delivered. I am confident about that because things are changing. The new hospital programme has been put back on a firm footing, with every project backed by real funding and a realistic plan, which is equally important.
Crucially, this Government are not stopping there. Labour’s 10-year health plan is about improving how the whole system works with patients. That means better co-ordination between GPs, hospitals, mental health services and social care, and ensuring that wherever people live, even if that is on the border between counties, which is an issue close to the hearts of people in my constituents, they are not passed from one part of the system to another without support. It also means doing more locally, with more care available close to home, so fewer people have to travel longer distances to get basic treatment, and earlier invention, so that problems are picked up before they become emergencies.
We have already seen progress. We have cut waiting lists by over 200,000, delivered over 3 million extra appointments, recruited more GPs and invested £26 million in mental health crisis centres to alleviate the pressures on A&E services. Some £2 billion will be spent on technology and digital improvements to increase productivity and ensure patients are seen faster. We are starting to turn things around and doing so in a way that puts patients first, without making undeliverable, unrealistic promises that damage trust in politics and the power of politics under our democratic system. For too long, people in Banbury have been left wondering if their NHS would be there when they needed it. After 14 years, they can see that help is finally on the way. With this Labour Government, things are changing practically and with purpose.
Terminally Ill Adults (End of Life) Bill (Twenty-fourth sitting)
Sean Woodcock ExcerptsTuesday 18th March 2025
(1 year, 5 months ago)
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Danny Kruger
I am grateful to the hon. Lady. I hear what she has said; we have had this conversation before. I am afraid that I do insist on my right to use the English language accurately. What is proposed in the Bill is a carve-out of the Suicide Act, so I regret to say to the hon. Lady that I will continue to describe it in terms that are appropriate to it. I hope I do so with absolute sympathy and respect for the many families who have suffered from the trauma of seeing their loved ones die badly—loved ones who would have wished for an assisted death under the terms of the Bill. I am very glad to hear that the hon. Lady supports my amendment. I do not think it would be any sort of imposition on families for the doctors to let the patient know at the last moment that they have the opportunity to turn back.
Sean Woodcock (Banbury) (Lab)
The hon. Gentleman is making a really powerful speech, and I am minded to support the amendment on the basis that there will be a small but significant group of people who, having gone through the whole process, will feel they have been a burden on the people who have gone to all the effort, through every stage, to get to the end, so if they have doubts at the end, they may be reluctant to change their mind. It will be a very small group, but I do think it is significant. I see it as the re-establishment of autonomy for the patient, which we all believe in; does the hon. Gentleman agree?
Danny Kruger
That is absolutely right. We have to think about the no doubt quite turbulent emotions that people will have as they approach the end of their life, and to reiterate their genuine autonomy. They are not on a conveyor belt that they cannot get off until the very last moment—until they have passed through this gateway. The amendment seeks to remind them and, indeed, their families of that. I am afraid we do hear terrible stories of people who have arranged their assisted death: often family members have flown in from abroad, doctors have been summoned and so on, and then they feel they have to proceed because, as the hon. Gentleman says, they feel a burden as it is and do not want to be an annoyance at the end by making everybody wait. I am afraid that is indeed the reason for the amendment. I am pleased to hear that it sounds like it will be accepted, and I am grateful to Members who will support it.
Amendment 463 is the other, more substantial, amendment in my name in this group. It would leave out paragraph (c) of clause 18(6), which says that the doctor can assist the patient
“to ingest or otherwise self-administer the substance.”
Here we are in a lot of difficulty and a grey area. Let me try to unpack the reasons for objecting to paragraph (c). The hon. Member for Spen Valley argued in an interview that there is a “very clear line” between the Bill and euthanasia, which is someone else doing the deed. She said that the act
“has to be the decision of the individual, and it has to be the act of the individual”,
which
“creates that extra level of safeguards and protections”.
I agree with her—it is right that we introduce the additional safeguard of insisting that the patient performs the final act themselves.
I recognise that there is a distinction between euthanasia and assisted suicide, and I support the hon. Lady’s attempt to insist on that distinction in the law. It is another safeguard. But the fact is that there is a blurred line between the two, and I can also understand why many people object to the exclusion of euthanasia—of the fatal act being administered by other people. A doctor from Canada said it was inherently ableist to require the patient to self-administer, and I think that is unarguable. If that is the case, the logical provision would be to enable euthanasia, if one believes in the autonomy of the patient.
I am afraid my strong belief is that the reason why euthanasia has not been proposed in the Bill or by the campaign, which has been led by an organisation that used to call itself the Voluntary Euthanasia Society, is because the campaign has concluded that such a Bill would not pass Parliament and believes—I think correctly—that Members of Parliament and members of the public would object to euthanasia. But the logic of the Bill and of the campaign is actually for euthanasia, if one believes genuinely in autonomy, in equal rights and in not discriminating against people who are physically unable to perform the act themselves.
Despite my efforts, hon. Members have not been able to conceptualise the difference between withdrawing a medical treatment that affects a particular medical condition on the one hand, and administering drugs that annihilate the person on the other. There is a meaningful and important difference between those two things. One is a person declining to use a shield, and the other is the person using a sword against themselves. I think there is a difference there, and I regret that colleagues do not see it.
Where I do not see a difference, however, is between a person injecting themselves and asking someone else to inject them. There are two versions of the death of Saul in the Bible. I think this is the only reference to the Bible that I will make in this whole debate, and I make it partly to show that there is an inconsistency in the Bible—there is not a single Biblical view of these matters. In one account of the death of Saul, having been defeated by the Philistines, he asks his servant to run him through with his sword, but his servant refuses, so he falls on his own sword and kills himself. In the other version, he gets a passing soldier to run him through—to kill him.
To me it does not matter: the inconsistency in the story is interesting historically, but conceptually, logically and morally I do not see the difference. Whether you fall on your own sword or ask someone else to do it to you, it is still a sword, you are still actioning it and you are still responsible, if we recognise that the individual has autonomy. But there is a practical difference. We are talking about assistance to die and the role of another person who supports your decision and helps you to fulfil it, but that results in an obscuring of the practical difference. In practice, as we see in clause 18(6), the assistant comes very close to euthanasia. The role of the assistant, in my view, is closer to that of the soldier who kills Saul than of the servant who refused to do it.
Terminally Ill Adults (End of Life) Bill (Twenty-fifth sitting)
Sean Woodcock Excerpts(1 year, 5 months ago)
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The Chair
Good afternoon, ladies and gentlemen. Given the fluidity of matters on the Floor of the House today, my personal view, although it is only my view, is that I should not suspend the sitting at 5 o’clock. Hon. Members may leave the room at any time for a comfort break, but as there is likely to be an interruption and as the Committee may not want to sit too late, my view is that we should bash on, or rather that you should bash on. Mr Dowd will take the Chair at 5 o’clock, so I shall be able to escape. You have your own escape routes.
The Chair
Yes, there may be an escape committee.
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.)
Danny Kruger
Yes. We discussed this briefly this morning. There is an important consideration about the effect on medical staff involved in the administration of assisted suicide, and we have to make sure that those who do not want to participate are properly insulated from any sort of obligation, which I know is the intention of the Bill’s promoter, the hon. Member for Spen Valley. Nevertheless, I am concerned about the knock-on effect of participation in assisted suicide spreading across a practice. I agree with my hon. Friend that we have to be mindful of the impact on doctors. The more we widen the scope—as logic compels us to do, as the hon. Member for Harrogate and Knaresborough suggests—the more it is about not just discretion, but an obligation on doctors to approve.
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.
Sean Woodcock
The hon. Member for Harrogate and Knaresborough is clearly trying to right what he believes to be an inherent injustice in the Bill, but is the hon. Member for East Wiltshire concerned, as I am, that if the amendment were to pass, it would take the debate from a place of being about assisted dying towards what many people would term euthanasia? That is not something that the House in any way endorsed by voting for the Bill on Second Reading.
Danny Kruger
I am absolutely certain that if the amendment had been in the original Bill, the Bill would not have passed Second Reading, because it would have validated the argument that many of us made that the implication of assisted suicide is euthanasia. The distinction between them, while valid in the abstract, does not apply in practice, and that distinction will be quickly overridden in time. I agree with the hon. Gentleman.
Sarah Olney (Richmond Park) (LD)
It is a pleasure to serve under your chairmanship, Sir Roger. I support amendment 429, tabled by the hon. Member for Bexleyheath and Crayford.
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”.
Sean Woodcock
The hon. Lady is making an important point about the lack of coherence that amendment 429 is trying to sort out. Throughout these weeks of debate in Committee, we have heard about the importance of clarity for practitioners. This provision introduces severe doubt as to exactly what a practitioner is meant to do. I understand that we do not want to say, “You have to do this and this, and in this order”, and that amendments have been rejected on that basis, but this clause opens a massive loophole in the law and practice, which concerns me. Does the hon. Lady share my concern?
Sarah Olney
The hon. Gentleman is absolutely right. It is fundamental that, with this legislation, we provide very clear guidance to the medical practitioners who will be engaged in assisting patients with this matter. This is not only for their peace of mind that what they are doing is acceptable under the law, and accords with what Parliament has decided, but for the protection of patients. It is incumbent on us to be really clear about what we mean, and I do not believe we are as the Bill is currently drafted.
Dr Opher
I am glad to serve under your chairmanship, Sir Roger. First, I will briefly address the whole area that we are talking about. GPs who are involved in terminal care will go and see a patient as they are slowly dying; we do not know at any point what will happen, and almost anything can happen. I have sat with people who may at any point have a massive pulmonary haemorrhage and drown, for example, or they may just quietly go to sleep—or they may start vomiting.
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.
Sean Woodcock
My hon. Friend speaks with a lot of knowledge, and every time he contributes I learn something about the medical profession. My challenge to him is that while he is right that at the end of someone’s life GPs and doctors are used to looking after somebody, and there are lots of different complications from medical treatment, in the situation we are talking about the treatment—if we can call it that—is to end their life. That is a distinct difference. Something has gone wrong if their life has not ended suddenly or peacefully, as they were hoping. That means that they might die hours or days later, potentially in agony, or they will linger on, potentially also in agony. The amendment is to try and clarify what then happens, because I would suggest that this is very different from a normal medical procedure.
Dr Opher
I thank my hon. Friend for his sensitive and clear worry. But it is important to note that we would not in any circumstances try to do something that would finish someone’s life after they had been given their self-take medicine, because that is against the law. In the Bill we have made a clear distinction between the doctor—a euthanasian, if you like—taking the life, and the patient taking medicine that finishes life. What we need to do is simply support the patient. If, as my hon. Friend suggests, they are in pain we would give them a morphine drip, which is in common use in terminal care. I absolutely respect what he says, but the same treatment principles would be in place as in terminal care.
Sean Woodcock
I rise to speak to amendment 440, which stands in the name of my hon. Friend the Member for York Central. It concerns what the doctor must do when they are supervising an assisted dying procedure. It would add a requirement for the medical records to include
“(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.
Terminally Ill Adults (End of Life) Bill (Twenty First sitting)
Sean Woodcock ExcerptsTuesday 11th March 2025
(1 year, 5 months ago)
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Sean Woodcock (Banbury) (Lab)
I rise to speak in support of amendment 362, tabled by the hon. Member for East Wiltshire, which requires the registered medical practitioner to explain and discuss the nature and the risk of the lethal drugs. There is a bit of a theme to the amendments I have tabled so far: they have almost all been about giving the patient more information. The promoter of the Bill, my hon. Friend the Member for Spen Valley, is quite right in focusing on the importance of the patient’s autonomy. I absolutely believe in and value that autonomy—I am sure everybody across the Committee does so too—but true autonomy is linked to having access to good quality and accurate information. It can severely impact someone’s autonomy if they do not. This Bill states that the person must have an informed wish to end their own life. I believe that this must explicitly include an understanding of the nature of, and the risks of, the lethal drugs involved in assisted dying.
This Bill’s passage through this place has led to lots of conversations and a greater awareness of the issue of death across the country. Morbid as that is, it is a really good, healthy thing that people are talking about end of life—something which we will all encounter—and that is welcome. The debate on assisted dying has made many people concerned about the nature of death and the choice that they might face at the end of their life. Inevitably, for some, the impression has been given that an assisted death uniformly provides a pain-free alternative. I accept that that is absolutely what the promoter of the Bill, and those in support of it, are aiming for—that is not in question—but we have heard from the hon. Member for East Wiltshire about issues with that, and that there have been exceptions in places where such laws have been put in place. I also point to the evidence of James Haslam, a consultant in anaesthesia and intensive care medicine, who put in his written evidence to the Committee that assisted dying
“does not guarantee a painless, peaceful and dignified death.”
The key word there is “guarantee” because, unfortunately, some people who ingest the prescribed lethal drugs do experience distress and complications. In the Netherlands, a high dose of barbiturates is used for all administrations of lethal drugs, and in two thirds of cases—the majority—the person dies within 90 minutes, but a third of cases do take longer and can take up to 30 hours. Complications include difficulty swallowing the whole prescribed dose, vomiting, and in some cases re-emergence from coma. I do not accept that this is an incidental concern. Vomiting affects up to 10% of assisted deaths by oral administration in the Netherlands. There is no easy way to research the efficacy of these drugs on humans given their lethal effects, and as a result there is no regulatory authority in the world that has approved these drugs to be used for this purpose. The data that we have shows that these complications take place in all jurisdictions that have assisted dying. As the hon. Member for East Wiltshire has already mentioned with respect to Oregon, between 2012 and 2022, 11% of the time there were complications.
These complications raise important ethical and medical questions for the doctor and for the terminally ill person. Of course, by the time complications occur, it is too late to discuss or reconsider the person’s options. That is why it is essential that the registered medical practitioner has already explained and discussed with the person the risk and nature of the lethal drugs. Choice is about not simply having options available, but understanding them. That goes to the point I made at the beginning: autonomy is absolutely linked to the quality of the information that someone has been given in order to make that autonomous choice. That requires the registered medical practitioner to explain the full risk and the nature of the possible complications from the lethal drugs.
The General Medical Council sets out five points of guidance for doctors on how they should hold a dialogue with their patients about reaching a decision. Three of the five GMC points are already covered by the Bill, but two are excluded: uncertainties about the diagnosis or prognosis, including options for further investigation; and the potential benefits, risks of harm, uncertainties about and likelihood of success of each option, including the option to take no action.
I can see no good reason why we would not want doctors to be entirely honest with patients who are considering assisted dying, even to the point of saying that the vast majority of people will not have any complications, but there is a chance. Personally, I see no issue with that, or why there should be. Doctors should give their patients that information; not only is that good practice—as we heard from my hon. Friend the Member for Stroud and the hon. Member for Solihull West and Shirley—but, as the GMC guidance makes it clear, they should do so because we should not give people with serious illnesses a false picture of what assisted death means. I link back to the emphasis on the word “guarantee”, as per the written evidence I quoted.
Amendment 362 would affirm the commitment of the Bill’s promoter, my hon. Friend the Member for Spen Valley, to upholding medical standards. It would clarify the full responsibilities of the registered medical practitioner under the General Medical Council guidelines. Perhaps more importantly, it would put the terminally ill person in a better position to understand fully the options available and the associated risks.
In Committee, we have heard frequently that the Bill is about expanding choice and autonomy at the end of life. To act autonomously, terminally ill people need— I emphasise this again—to understand what they are facing as best they can, with the best and most accurate information available to them as early as possible. That is why I support amendment 362, and I urge the Committee to do so, too.
Naz Shah (Bradford West) (Lab)
I rise to speak in support of amendments 305 and 306, in the name of my hon. Friend the Member for York Central.
Under amendment 305, a doctor would have to explain what effects the medicines would have as well as death. I appreciate the points made by the hon. Member for Solihull West and Shirley, and what other Members have said about effects and side effects. I would first say: we do not know the side effects. There is no research into any of the drugs being used for the purpose that we are looking at—for assisted suicide, euthanasia or whatever whichever jurisdiction calls it. We therefore cannot give a clear view of what the side effects are; they are largely unknown, as I understand it.
In addition, there are different drugs. My hon. Friend the Member for Stroud mentioned one drug, pentobarbital, which has caused huge concern. I did not know about the issue in Australia, but I know the evidence from death row in America, after Texas started using pento-barbital; there have been huge concerns and lawsuits there. I am happy to be referred to other evidence. In some cases, the effect of the drug has been described as akin to suffocating or even as being waterboarded or drowning.
Concerns have been expressed about the use of such drugs in other jurisdictions. I agree with the hon. Member for East Wiltshire that we should be looking at all such jurisdictions, because this is something new for us. If we are to learn from other jurisdictions where assisted dying has happened and it has been okay for people, whether that is Australia or others, it is equally right that we hear from those jurisdictions where things have not gone right or to plan. That is important.
Clause 9(2)(b) states:
“The assessing doctor must…explain to and discuss with the person being assessed”,
among other things,
“the nature of the substance that might be provided to assist the person to end their own life (including how it will bring about death)”.
Amendment 305 would instead require that the assessing doctor explain to and discuss with the person being assessed the nature of the substance that might be provided to assist the person to end their life, including how it will bring about death and any other effects it would have in addition to death. That is really important.
There are several relevant things that patients should know if they are to be able to make an informed choice. First, they should have as clear an idea as possible what the experience of taking the lethal drug is like. In some countries where people undergo assisted dying, they swallow a cocktail of drugs. Patients whose assisted dying process did not succeed have said that the drugs are bitter tasting. If this is to be the method used in assisted death in this country, applicants should be aware of that, because some people do not take tablets—they just will not do it. If other methods are to be used, doctors should inform patients of what the experience will be like to the best of their knowledge.
The second thing assisted death applicants should know is that they may suffer complications. We know from countries and states that have assisted dying that some patients undergo complications during the process. It has been said before, but I will repeat the point, because it is really important: there can be complications. People may vomit or undergo seizures. One assisted dying recipient took 137 hours to die. That is five days and 17 hours.
We do not know the full number of patients who have died very lengthy deaths in Oregon, because the lethal drugs are self-administered, usually with no doctor present, but just because there is no report saying that things have gone wrong, it does not mean that everything has gone right. Oregon also found that at least nine patients failed to die from lethal drugs. We do not know whether that is the total number—again, because the assisted dying applicants in Oregon self-administer drugs. We can say with certainty that complications exist, although, unfortunately, gaps in the data mean that we do not know how common they are.
Amendment 306 would change the duties of a doctor present during the assisted dying process. Currently, clause 9(2)(c) states that the co-ordinating doctor must discuss with the person
“their wishes in the event of complications arising in connection with the self-administration of an approved substance”.
If the amendment were accepted, the clause would state that the co-ordinating doctor must discuss with the person their wishes in the event of complications arising in connection with the self-administration of an approved substance
“including the escalation of medication intervention”.
This is a point of great importance, both for the person seeking assisted dying and the doctor, who would have to be present for the process. It would mean that the applicant and the doctor would have to think through what they wanted to happen if the applicant did develop complications. Should the doctor at a certain point act to revive an applicant—for example, if the person seemed to be suffering extreme pain as a result of a lethal drug? Alternatively, should the doctor remain as an observer and, if it were clinically possible, someone to administer further pain-relieving drugs? Not doing anything is clearly not an option. Both courses of action might seem harrowing to the person seeking assisted dying, but it is something that they should clearly discuss with the doctor, because these situations could really happen.
There are clearly no easy answers to these questions, but if applicants are to take an informed choice over assisted dying and if we want to provide autonomy, they must know that these questions exist and they must discuss them with their doctors. We have talked a lot about autonomy for people with serious illness. Those people will not have autonomy unless they are informed in accurate detail about the possible outcomes of assisted dying, and these amendments would ensure that.
Ultimately, if someone takes a drug to end their life, they will either die or not die and be left in a compromised state. Are they then escalated to A&E, because leaving them in that state is not an option for any doctor—or does the doctor proceed to administer more drugs? What does the doctor do?
Naz Shah
I thank my hon. Friend for pointing that out, and I will look at it, but that was not my understanding.
There are multiple reasons to oppose new clause 21. With it, the Bill will reduce the impartiality that would have been provided by having a High Court judge rule on applications. It will increase the risk that a large number of decisions are taken by people who are enthusiastic proponents of assisted dying, which will reduce patient safety. It will also create a powerful new commissioner, who will appoint panel members and will then rule on whether they have made the right decision. That same commissioner will also be able to decide whether to overturn a panel’s decision to reject an assisted death application. That is a huge amount of power to put in one person’s hands and we should not do so. I urge hon. Members to reject the new clause.
Sean Woodcock
May I say what a privilege it is to have you in the Chair, Mrs Harris? [Laughter.] Clearly, I know how to win and lose an audience.
I rise to speak to amendment (d) to new clause 21, which has been tabled by my hon. Friend the Member for Derby North. I will start by saying how glad I am that the promoter of the Bill, my hon. Friend the Member for Spen Valley, has recognised some of the concerns regarding the multidisciplinary panel, and I welcome the improvements that she has made in the new clause.
I am pleased that the panel “must” now hear from the person to whom the referral relates, whereas previously it was the case that the panel “may” hear from them. That is a partial concession, but an important one. It will allow the commissioner to have greater scrutiny over the application and better assess the person’s eligibility for assisted dying.
Amendment (d) is a technical amendment. We have discussed a number of such amendments before in this Committee, many of which have fallen for reasons that I understand, even if I do not agree with them, including on the basis that doctors are already having these conversations and we do not want to police them. The panel stage is brand new; given that and given the level of public scrutiny of the Bill, I make no apology for supporting putting something into primary legislation to say what is expected of this process. It is very important that we make sure from the off that we get things right.
I am deeply concerned about some of the potential oversights in the panel model. The purpose of the panel is to provide meaningful scrutiny of a person’s application. The panel draws on a wider range of experts to assess the complex aspects of the application, such as assessing for coercion and capacity. However, the panel’s ability to fulfil this scrutinising role is in many ways quite limited.
Amendment (d), which was tabled by my hon. Friend the Member for Derby North, would address the significant oversights in new clause 21. It would introduce a far more comprehensive set of requirements for the panel in its review. Those changes are not barriers to access; rather, the amendment would ensure that the panel has a far wider range of information—a theme to which I referred earlier—on which to review the application for an assisted death. Fundamentally, the amendment would give the panel more tools to conduct meaningful scrutiny.
However, let me list what the panel is not required to do under new clause 21. It does not have to hear from one of the two registered medical practitioners. It will hear from the other registered medical practitioner, perhaps via audio link, but it does not have to question them. Likewise, it will hear from the person, perhaps via audio link, but it does not have to question them. The person may have a proxy to sign their declarations, but the panel does not have to hear from or question the proxy. The panel does not have to hear from or question any other person. Let us be clear who that includes: the panel could assess the person’s application without any information from the person’s relatives, family members, friends, social workers or care workers.
New clause 21 states only that the panel
“may ask any person appearing to it to have relevant knowledge or experience to report to it on such matters relating to the person to whom the referral relates as it considers appropriate.”
Subsection (4) makes it clear that, whereas paragraphs (a) to (c) require the panel to hear by live audio from the person seeking assisted dying, the evidence that the panel chooses to take from anybody else could be in written form.
Let me draw out with an example what that might mean in practice. A person is diagnosed with a terminal illness—in this case, heart failure arising from coronary heart disease. Both doctors approve the person’s application for assisted dying, on the balance of probability. The person has a physical disability and asks a proxy—a neighbour, say—to sign off the application. The first doctor speaks to the panel via video link restating the schedule forms and providing no new information. The panel then hears from the person, also via video link. It cannot see the person, but after hearing their statement it decides that it is satisfied that the conditions are met and approves the person’s assisted death.
The panel has not spoken to the second doctor and has not put any questions to the second doctor or to the person applying for an assisted death. Incredibly, the panel has not spoken to the proxy, who may just be someone of good standing in the community. Nor has it spoken to the person’s relatives, to anyone standing to benefit from the person’s death or to anyone in the person’s care. Any one of those people could have concerns that the person is being coerced into an assisted death. They may even have evidence of coercive behaviour. However, at no point is the panel required to consider speaking to any of those people.
Time and again, the Committee has heard from experts that coercion and controlling behaviour can be extremely difficult to detect. Often, the person will not reveal that they are suffering from that form of coercion, yet it is often those who are closest to the sufferer—a close relative, a member of the family or a social worker—who pick up the signals. Any of them could be looking out for the person’s welfare and noticing them becoming more isolated and emotionally manipulated by another. At no point, however, does the panel have to consider hearing from that person. If this Bill is going to do everything to safeguard against the risk of coercion, as everybody on this Committee believes it should, that should change.
The panel must consider listening to the people closest to the person. Amendment (d) to new clause 21, in the name of my hon. Friend the Member for Derby North, would address those flaws by giving the panel a higher standard of scrutiny. The panel would have to hear from and question both doctors. It would have to question the person, not simply hear from them. If the person has a proxy, as under clause 15, the panel would have to hear from and question that proxy. Crucially, the panel would have to consider hearing from and questioning persons properly interested, and any other person who has provided treatment or care for the person being assessed in relation to that person’s terminal illness. It would also be able to hear from and question any other person whom new clause 21 states can be asked to report to the panel.
The changes in the amendment would significantly improve the scrutiny provided by the multidisciplinary panel. It would provider a broader range and greater detail of evidence for the panel to base its review on. Ultimately, it would make the multidisciplinary review far more meaningful. Why is this greater scrutiny necessary? This is about protecting the vulnerable people who are easily forgotten. The amendment seeks to provide the strongest possible protection for them. This robust and comprehensive scrutiny is necessary to have a better chance of preventing the worst abuses.
I foresee one possible criticism from some hon. Members, which is that the amendment would slow down the decision-making process for people who are at no risk of coercion. That may well be true, but if the amendment is accepted, the panel would have to question both doctors, not just hear from one, and it would have to determine whether to hear from and question other people. In straightforward cases, in which the panel discovers no initial evidence that disquiets it, a small amount of time might be added to the hearing; in cases in which the panel finds evidence that means it may need to dig deeper, there could be a greater delay to the decision.
Personally, I do not see how we can avoid that. If we are serious about having safeguards to protect the most vulnerable, we should and must accept it. The process of vetting applications will take more time on average, and a lot more time in some cases, but the alternative is a simpler and faster system in which it will be much harder for the panel to detect coercion and other disqualifying factors. In that case, the chances will be higher that some coercive or abusive people will find it possible to push people towards an assisted death. Such a system is what we see in new clause 21, as drafted. We face an inescapable trade-off. We cannot lift protection for those who are most vulnerable to coercion because it would make the process easier for people who do not face that risk. I urge hon. Members seriously to consider supporting the amendment.
Sarah Green
I rise to speak to two aspects of this group of amendments. The first is the inclusion of social workers. When we first started receiving written evidence, I found the submissions from social workers the most compelling. I agreed with them that their profession has a key role to play in the process. I am pleased that they will feature on the panel: I believe that that will strengthen the safeguards in the Bill.
My second point relates to amendment (a) to new schedule 2, in the name of the right hon. Member for Dwyfor Meirionnydd. I was fortunate to grow up in a Welsh-speaking part of rural north Wales. I am a Welsh speaker, and Welsh is the first language of some of my friends, my neighbours and my family members. It is the language that they dream in, the language they count in and the language that they are most comfortable using, so when it comes to end-of-life conversations it is important that they can use the language in which they are most proficient and fluent.
Should an individual choose to access an assisted death through the medium of Welsh, they should be able to do so without the use of an interpreter. Crucially for the panel, that means that where an individual has chosen that route, the panel will need Welsh proficiency. Welsh speakers have had the right to ask for services in Welsh for years now, so assisted dying should be no different. That is why services in Welsh need to be on the face of the Bill. I wholeheartedly support the amendment and will vote for it if the right hon. Member chooses to press it.
Terminally Ill Adults (End of Life) Bill (Nineteeth sitting)
Sean Woodcock Excerpts(1 year, 5 months ago)
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Daniel Francis
I will not press amendment 347 to a vote, but I will speak to it, and to this group of amendments.
First, I shall turn to amendments 14 to 19, tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), which would require a co-ordinating doctor to refer the patient to an independent psychiatrist, or someone else qualified, as decided by the Secretary of State. That practitioner would then produce a report that the co-ordinating doctor must take into account when assessing whether the person has capacity, has a clear, settled and informed wish to end their life, and has not been coerced or pressured.
These amendments would replicate the existing practice of assessment for living organ donors. If we use a psychiatrist’s assessment for those who are donating an organ—a serious decision—how much more serious is this decision to end one’s life, and how much more necessary is the psychiatric assessment? It feels illogical to offer psychiatric assessments to patients who may donate organs, but not to those who may end their life. The wording of these amendments mirrors the regulations that have been applied through the Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006.
For organ donation, there is a separate body—the Human Tissue Authority—which oversees the network of assessors. These amendments do not suggest a separate body for assessors in the context of assisted dying, instead suggesting that the assessor should be a registered psychiatrist or someone qualified, as decided by the Secretary of State. This ensures control over who can be an assessor while also being flexible.
My hon. Friend the Member for Spen Valley, the Bill’s promoter, said in oral evidence that she had looked at the model of assessment for capacity and coercion that is used for living organ donation, so I will be interested, when we get to that point of the debate, to know why the Bill does not model its assessments on those that are already done for organ donation.
These amendments would strengthen the Bill by ensuring that patients are properly assessed as having capacity to make such a huge decision and would help to spot coercion. As it stands, the Bill has no mention of the doctors giving assessments having psychiatric specialisms. These amendments would ensure that a specialist meets the patient, which is vital. We have heard already how difficult it can be to spot coercion, especially repeat coercion.
Sean Woodcock (Banbury) (Lab)
Given that this is a significantly more serious decision than organ donation, these amendments would seem a very appropriate change to consider.
Daniel Francis
I agree. An assessment by a specialist would protect patients and give another opportunity to spot coercion—something that we all want to safeguard against.
I welcome the acceptance of amendment 20, tabled by my hon. Friend the Member for Lowestoft (Jess Asato), ensuring that doctors will be better trained to spot these issues, but that is only the start. We need the same in-depth assessment that living organ donors would get. Patients must fully understand the decision they are taking, and doctors must be convinced that they are capable of making it.
For organ donation, the NHS recommends that potential donors meet a mental health professional at an early stage, particularly in cases where people have a history of mental illness. As we have already noted, those diagnosed with terminal illnesses are likely to also have mental health issues. Dr Sarah Cox, in her oral evidence, cited a study by Professor Louis Appleby, the Government’s suicide prevention adviser. Dr Cox said:
“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]
Terminally Ill Adults (End of Life) Bill (Nineteeth sitting)
Sean Woodcock ExcerptsWednesday 5th March 2025
(1 year, 5 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 5 March 2025 - (5 Mar 2025)
Daniel Francis
I will not press amendment 347 to a vote, but I will speak to it, and to this group of amendments.
First, I shall turn to amendments 14 to 19, tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), which would require a co-ordinating doctor to refer the patient to an independent psychiatrist, or someone else qualified, as decided by the Secretary of State. That practitioner would then produce a report that the co-ordinating doctor must take into account when assessing whether the person has capacity, has a clear, settled and informed wish to end their life, and has not been coerced or pressured.
These amendments would replicate the existing practice of assessment for living organ donors. If we use a psychiatrist’s assessment for those who are donating an organ—a serious decision—how much more serious is this decision to end one’s life, and how much more necessary is the psychiatric assessment? It feels illogical to offer psychiatric assessments to patients who may donate organs, but not to those who may end their life. The wording of these amendments mirrors the regulations that have been applied through the Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006.
For organ donation, there is a separate body—the Human Tissue Authority—which oversees the network of assessors. These amendments do not suggest a separate body for assessors in the context of assisted dying, instead suggesting that the assessor should be a registered psychiatrist or someone qualified, as decided by the Secretary of State. This ensures control over who can be an assessor while also being flexible.
My hon. Friend the Member for Spen Valley, the Bill’s promoter, said in oral evidence that she had looked at the model of assessment for capacity and coercion that is used for living organ donation, so I will be interested, when we get to that point of the debate, to know why the Bill does not model its assessments on those that are already done for organ donation.
These amendments would strengthen the Bill by ensuring that patients are properly assessed as having capacity to make such a huge decision and would help to spot coercion. As it stands, the Bill has no mention of the doctors giving assessments having psychiatric specialisms. These amendments would ensure that a specialist meets the patient, which is vital. We have heard already how difficult it can be to spot coercion, especially repeat coercion.
Sean Woodcock (Banbury) (Lab)
Given that this is a significantly more serious decision than organ donation, these amendments would seem a very appropriate change to consider.
Daniel Francis
I agree. An assessment by a specialist would protect patients and give another opportunity to spot coercion—something that we all want to safeguard against.
I welcome the acceptance of amendment 20, tabled by my hon. Friend the Member for Lowestoft (Jess Asato), ensuring that doctors will be better trained to spot these issues, but that is only the start. We need the same in-depth assessment that living organ donors would get. Patients must fully understand the decision they are taking, and doctors must be convinced that they are capable of making it.
For organ donation, the NHS recommends that potential donors meet a mental health professional at an early stage, particularly in cases where people have a history of mental illness. As we have already noted, those diagnosed with terminal illnesses are likely to also have mental health issues. Dr Sarah Cox, in her oral evidence, cited a study by Professor Louis Appleby, the Government’s suicide prevention adviser. Dr Cox said:
“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]
Danny Kruger
I am sorry for having begun speaking to the wrong amendments earlier. I was trying to speak to amendment 58—I could not read my own notes—not amendments 55 or 56.
I do not want to reheat the previous arguments about the imperative—as I believe it is—to refer to a psychiatrist. I support the suggestion of the hon. Member for Ashford and the hon. Member for Runnymede and Weybridge (Dr Spencer) that the independent doctor should have relevant qualifications in psychiatry and experience in assessing mental capacity through their professional qualifications. The importance of having a holistic multidisciplinary team has been well argued and subsequent amendments to the Bill have attempted to delivered that.
I want to emphasise that if we adopted the amendment tabled by the hon. Member for Ashford, we would be acknowledging the reality that assisted dying is not like other medical decisions. By explicitly including psychiatrically trained clinicians, we would be giving special regard to the mental state of patients making an existential decision, not just a treatment decision. That is particularly appropriate for patients who are not expecting to significantly suffer bodily due to their terminal illness.
We have heard many stories of people who have died in painful or undignified ways, but that does not reflect the experience of the majority of those with a terminal illness—90% of cases, according to some studies—who are able to receive adequate or complete pain relief. For people who do not have an obvious motivation to have an assisted death, such as avoiding extreme pain, an investigation by a psychiatrist of their mental state would surely help to safeguard against those with depression or other ameliorable mental conditions that impair capacity accessing an assisted death.
I want to emphasise the evidence that we received from Professor Gareth Owen, who in 2021 conducted a large-scale survey of medical professionals in England and Wales. That found that non-psychiatric doctors—general practitioners and other doctors not trained in psychiatry—were less confident than other professionals in assessing capacity. It also found that 6.9%—less than 7% —of non-psychiatric doctors rated themselves as assessing capacity very well, which I think is significant. To place all the responsibility for assessing capacity and coercion, which are difficult to assess and contain complexities that psychiatrists are best placed to appreciate, in the hands of doctors who do not have specialist expertise is to be content with coercion being missed and capacity being poorly assessed. If we want to ensure that these tests are done well, the only way to do that is to involve psychiatrists, as the hon. Member for Ashford said.
Sean Woodcock
I will speak briefly on amendment 21, although I will commend my hon. Friend the Member for Ashford for his contribution to the debate. He speaks with clear expertise and experience, and a real love for his profession, and we all benefit greatly from his insights.
Over the last few weeks, I have found myself voting the opposite way from the promoter of the Bill on a number of occasions, but I am not opposed to assisted dying in principle. My issue is more about whether we can ever make it safe enough; the difference between us is marginal. One thing that has been apparent throughout these debates is her passion for improving the training for those involved in palliative care, and in the wider NHS and social care generally.
That is why I want to speak to amendment 21. In the witness testimony, particularly from Rachel Clarke, there was a lot of concern about whether coercion and people being put under pressure to go for assisted dying would be picked up, and whether the NHS was geared up for that. I think that this amendment, tabled by my hon. Friend the Member for Lowestoft, goes some way to addressing that.
I do not think training is a silver bullet, hence my votes over previous weeks, but it would make a massive difference. That is true not only for the implementation of the Bill; it would have wider benefits for the NHS, social care and palliative care more generally. Even though those are not necessarily in scope of the Bill, I suggest that they are good things, which is why Committee members should get behind amendment 21.
Jake Richards
I want to speak to amendment 57. I do not intend to press it to a vote, but I will explore whether and how the Bill could be improved in terms of the relationship between the two doctors. There is a tension here. On one hand, we want to keep the two doctors separate, because the second one can then assess the person with a fresh perspective. We have had a debate about where there is a relationship between the doctors, which could cause problems as well. On the other hand, the evidence that we heard from some witnesses who gave evidence to the Committee was that decisions or assessments taken together can be more efficient and safer.
We may come back to this issue when we consider clause 9—next week, I presume, looking at the clock—but I wanted to raise it now. I have had conversations with the promoter of the Bill about it, but we also need to have conversations with Ministers about the best way to regulate the relationship between the two doctors to ensure that it is safe in the way that it keeps them separate but allows them to confer.
Terminally Ill Adults (End of Life) Bill (Sixteenth sitting)
Sean Woodcock ExcerptsTuesday 4th March 2025
(1 year, 5 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 4 March 2025 - (4 Mar 2025)
Danny Kruger
The hon. Lady is absolutely right that that is what witnesses told us, but we need to ensure that it happens in all cases; the purpose of these amendments is to ensure that good practice is universal. In the case of assisted dying, bad practice would be terrible. Of course, good doctors seek the guidance of others and do not operate in isolation, but the Bill would allow them to do so. It is important to ensure that the system lives up to the good practice that she refers to.
Committee members will be glad to hear that I am not going to rehearse the arguments about capacity and coercion, but those concerns are why it is important to have a multidisciplinary team at an early stage. The Committee has rejected all attempts to strengthen the capacity test, but it could at least allow a psychiatrist to have an earlier role in the process of checking for capacity. We heard from multiple witnesses about the importance of doing that, and that is what National Institute for Health and Care Excellence guidance states. As the hon. Lady said, it is good practice, so as Professor House said in his evidence to us, it would not be “a terribly radical thing” to do it.
On coercion, as the social worker Jess Carrington wrote to us:
“The only people who are comprehensively trained to recognise signs of abuse, in particular, coercive control, are social workers.”
According to research by Dr David Ross, doctors suspect less than 5% of cases of elder abuse. I will not rehearse the arguments around coercion, but I hope that the Committee will note that the only way—or the best way; it will not be foolproof—to ensure that coercion is spotted is by having a social worker at the very beginning of the process.
I think that is enough from me, Mr Efford—I am sure you agree.
Sean Woodcock (Banbury) (Lab)
I rise to speak to amendments 108, 343 and 344. I am delighted that the promoter of the Bill, my hon. Friend the Member for Spen Valley, has said that she accepts amendment 108, which was tabled by my hon. Friend the Member for East Thanet. It would require a doctor who was having an initial conversation with a person about assisted dying to “offer” to refer them to a palliative medical specialist. That would give the patient a chance to discuss end of life matters in depth with somebody who has the necessary expertise.
We have spent much time in previous sittings on palliative care options, and there was some understandable concern about removing autonomy from those looking for assisted dying. I hope that amendment 108 strips away that concern, because it is about offering, not mandating, more information. When we are talking about autonomy, I think that all Committee members would agree that anybody making an autonomous choice could only benefit from more information, rather than suffer as a result of it.
The Bill says that when a doctor has an initial conversation with a person about assisted dying, they should explain and discuss
“any available palliative, hospice or other care, including symptom management and psychological support.”
The amendment aims to ensure that the patient has access to the best available information to make a decision about what they do next. It would act as a safeguard to prevent people from choosing assisted dying because they did not have a chance to have a thorough and accurate discussion about the care options available to them.
As I said, several people were concerned about autonomy, and providing people with the opportunity to meet a specialist. The written evidence from Hospice UK explains that there are currently wide misunderstandings about hospice care at societal level. It says:
“Implementation of assisted dying without care given to public awareness about palliative care is likely to worsen individuals’ ability to make decisions regarding their end of life. People will need access to information about the services and support available to them.”
That reminds the Committee that terminally ill people at the end of their life often may not know the options available to them. I am sure that every Member in the room wants to avoid that situation, and the option of a discussion with a specialist aims to ease some of that fear and provide accurate information.
In order to make palliative and hospice care a genuine choice, it is important that patients with concerns are able to speak to someone who can answer all their questions and offer accurate information. Marie Curie’s written evidence says:
“There must be clear recognition within the Terminally Ill Adults (End of Life) Bill that genuine choice at the end of life cannot exist unless dying people are able to choose to receive high quality palliative and end of life care”.
Unfortunately, we know that the state of palliative care in this country is not yet of evenly accessible quality. The amendment would not solve that problem—there is quite a lot of work to do in that regard—but it would at least improve the Bill. It would give every patient the option of a discussion about palliative medicine and would make some ground on access. We all want to ensure that those with terminal illnesses are given good support and confidence in their decision at the end of their lives. Amendment 108 would do that, and would give people the opportunity of a real, informed choice, which is why I am delighted that the Bill’s promoter, my hon. Friend the Member for Spen Valley, has agreed to it.
My hon. Friend the Member for Shipley, who tabled amendments 343 and 344, has a distinguished record in policymaking in health and social care. She served as chief analyst and director of quality and strategy at the Department of Health. Both amendments are very thoughtful, and we would do well to adopt them. It would be helpful to explain what they would do before I set out why I think that hon. Members should vote for them. Amendment 343 would change clause 4(4), on page 2, which reads:
“If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must explain to and discuss with that person—
(a) the person’s diagnosis and prognosis”.
If the amendment were made, subsection (4)(a), on line 28, would go on to read
“, including any relevant probabilities and uncertainties surrounding the person’s diagnosis and prognosis.”
Amendment 344 would change paragraph (b) on the next line, which says that the doctor must discuss with the patient
“any treatment available and the likely effect of it”.
If the amendment were made, paragraph (b) would go on to read
“, including the risks and benefits of such treatment, potential side effects, and the impact of the treatment on the person’s quality and length of life.”
Like amendment 108, amendments 343 and 344 are both intended to improve the quality of information that patients receive when they have their initial discussion about assisted dying. The first amendment addresses what many of the expert witnesses have identified as a key problem with the Bill. Clause 2 requires a doctor to have prognosed that
“the person’s death…can reasonably be expected within 6 months.”
I will not go over the various arguments that we have already had in Committee about that, but many of the very senior doctors who gave evidence to the Committee have said that it is extremely hard for medical professionals to give a prognosis with such assurance.
The Marie Curie palliative care research department at University College London also submitted written evidence, numbered TIAB 39. Those experts said:
“The Bill’s requirement for a prognosis of death within 6 months could lead to significant errors, where individuals either receive assisted dying prematurely or are denied it when desired. The variability in prognostic accuracy, especially for non-cancer illnesses, may exacerbate inequities in patient care.”
They went on to say:
“We also question how the term “reasonably” will be interpreted by doctors, and this is likely to vary between doctors, but also by the same doctor with different patients”.
The Marie Curie palliative care research department also said that predicting someone’s death “too soon” can result in early palliative care, and that such early care is
“not a harm in the same sense as might be implied in the context of assisted dying.”
Terminally Ill Adults (End of Life) Bill (Seventeenth sitting)
Sean Woodcock ExcerptsTuesday 4th March 2025
(1 year, 5 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 4 March 2025 - (4 Mar 2025)
Sean Woodcock (Banbury) (Lab)
I beg to move amendment 345, in clause 4, page 2, line 31, at end insert—
“(4A) If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must record and document the discussion and the information provided to the patient in their medical record and provide a copy to the patient.”
This amendment would add a requirement ensuring that the preliminary discussion is recorded and forms part of the patient’s medical record.
The Chair
With this it will be convenient to discuss the following:
Amendment 288, in clause 4, page 2, line 36, at end insert—
“(6) All efforts to dissuade the person from ending their own life must be recorded in the clinical records and subsequently made available to the medical examiner.”
This amendment would require the coordinating doctor to record efforts to dissuade the person from taking their own life and subsequently make this available to the medical examiner.
Amendment 297, in clause 7, page 4, line 3, at end insert—
“(1A) Any consultation as part of the assessment must have a full written transcript as its record of the conversation.”
This amendment would require all consultations for the first assessment to have a full written transcript.
Amendment 295, in clause 7, page 4, line 26, at end insert “, and
(d) collate all evidence provided regarding the condition of the patient in a document to be provided to the Medical Examiner and the relevant Chief Medical Officer after the person has received assistance to die in accordance with this Act.”
This ensures that the documentation that will be required by the Medical Examiner will be available when required.
Amendment 300, in clause 8, page 4, line 30, at end insert—
“(1A) Any consultation as part of the assessment must have a full written transcript as its record of the conversation.”
This amendment would require all consultations for the second assessment to have a full written transcript.
Amendment 302, in clause 8, page 5, line 10, at end insert “and
(c) provide details of the way the assessment was conducted and the written transcript of any consultation to the relevant Chief Medical Officer and the person’s own GP, maintaining a copy to be supplied to the relevant Medical Examiner after the person’s death.”
This amendment will ensure that medical records are in line with procedures for presentation to the Medical Examiner.
New clause 19—Recording of preliminary discussion—
“(1) This section applies where a registered medical practitioner (‘the practitioner’) conducts a preliminary discussion with a person.
(2) Where the practitioner is a practitioner with the person’s GP practice, they must, as soon as practicable, record the preliminary discussion in the person’s medical records.
(3) In any other case—
(a) the practitioner must, as soon as practicable, give a written record of the preliminary discussion to a registered medical practitioner with the person’s GP practice, and
(b) that registered medical practitioner must, as soon as practicable, include the record in the person’s medical records.”
This new clause requires a practitioner to include, in the person in question’s medical records, a record of a preliminary discussion under clause 4.
Sean Woodcock
Amendment 345 was tabled by my hon. Friend the Member for Shipley (Anna Dixon); I referred earlier to her record in this area. The amendment would ensure that medical practitioners record and document preliminary discussions with a patient about assisted dying and provide the patient with that information. I welcome the amendments from the Bill’s promoter to make records of the first and second doctor’s assessments. Those safeguard patients and the process. It is important that we have transparency and clarity on such weighty decisions.
Several people raised in their written evidence the importance of good documentation. These amendments meet those concerns. I assume that not including a record of the preliminary discussion is merely an oversight by the Bill’s promoter. The amendment seeks to do what she says she wants to do—protect patients and doctors—by making records of the discussions.
In written evidence TIAB55, Professor Allan House suggested that
“It should be required as it is in all other areas of medical practice, that specific written records are kept of this assessment and of procedures followed to end life—not just the substances used. The written record to be included in the person’s medical record so that it is available to the Medical Examiner. Records also to be available at appraisal to enable assessment of the quality of the process.”
Kim Leadbeater
I thank my hon. Friend for his comments. Will he take note of my new clause 19, which is in this group and states that the preliminary discussion has to be recorded?
Sean Woodcock
I am grateful for that intervention, which goes to the heart of my next question: why would we record and document later conversations, but not the initial one? That conversation could be one in which coercion takes place and without a record of it happening, patients and doctors are at risk. We have acknowledged that patients can be influenced by their doctors, whether consciously or unconsciously. We also noted how certain groups lack trust in the healthcare system. Dr Jamilla Hussain, in her written evidence, TIAB252, explained that the various inequalities faced by certain communities
“contribute to mistrust in health and social care services”
and that
“minority patients frequently express fear of having their lives shortened by healthcare providers, especially at the end-of-life with medication such as morphine and midazolam.”
In situations where patients are uncertain or lack trust in medical professionals, a record of the initial conversation is important to protect everyone involved. As Professor House stated, documenting the process and making records is common medical practice, so why would we differ here? We must protect patients and doctors, and making clear records at every stage of the process contributes to that.
Naz Shah
I rise to speak to amendments 288 and 295 tabled by my hon. Friend the Member for York Central (Rachael Maskell), both of which would improve the quality of records kept about people applying for assisted dying. Their aim is to make parliamentary and public scrutiny of the system easier and better. Amendment 288 would insert a new subsection at the end of clause 4, on page 2, line 36, reading:
“All efforts to dissuade the person from ending their own life must be recorded in the clinical records and subsequently made available to the medical examiner.”
That recognises that a doctor may follow existing guidelines and seek to dissuade the person from ending their life. It would ensure that such efforts are recorded to improve understanding of the Bill and its interaction with suicide prevention. As Professor Allan House noted in his written evidence, the National Institute for Health and Care Excellence guidelines apply
“in other areas where it is important to explore thoughts about life not being worth living”.
After an episode of self-harm or instances of suicidal thoughts, the medical professionals will explore
“current and recent personal and social circumstances, recent adversities, psychological state beyond merely assessing mental capacity and the presence of severe mental illness.”
In line with this suicide prevention strategy, a doctor may feel the need to explore those psychosocial factors and seek to dissuade the person from ending their life. We know that suicidal thoughts and depression are particularly common among terminally ill people. Dr Annabel Price, a member of the faculty of liaison psychiatry at the Royal College of Psychiatrists, gave oral evidence that among people who need palliative care at the end of their life,
“20% will have diagnosable depression, around 10% will have a wish to hasten death, and around 4% will have a more persistent wish to hasten death.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 270, Q351.]
She went on to say:
“Those who had a wish to hasten death were 18 times more likely to also feel suicidal”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275-276, Q359.]
Terminally ill people are therefore at particular risk, and it is vital that the Bill does not diminish wider suicide prevention strategies. The amendment would record instances where the medical practitioner may try to dissuade the person from ending their life. Some doctors may take the view of Professor Allan House, who said in his written evidence,
“a statement about wanting to end one's life cannot be simply taken as the result of a straightforward rational decision to choose one type of end of life care over others.”
Furthermore, this amendment would also address some of the concerns about unconscious bias. Recording efforts to dissuade the person from ending their life would show when doctors assume a person should have an assisted death where others should not. Fazilet Hadi of Disability Rights UK spoke about this in her oral evidence:
“We often find that doctors, because they cannot treat or cure us, do devalue our lives. We have had disabled people who have actually had it suggested to them or their families that their lives are expendable, when actually those people have got a lot of years to give.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 180, Q234.]
Providing records of a doctor’s efforts to dissuade the person from ending their life will address some of these concerns. It will ensure that there can be a more meaningful review of the impact of the Bill on different groups, so that the right to die does not become a duty to die.
In conclusion, amendment 288 would strengthen the safeguards in the Bill by ensuring transparency and accountability in doctor-patient discussions by requiring the documentation of efforts to dissuade individuals from ending their lives. We would lessen the impact of the Bill on wider suicide prevention strategies and provide evidence for meaningful review at a later date.
Amendment 295, also tabled by my hon. Friend the Member for York Central, is about enabling public and parliamentary scrutiny of the assisted dying system. It will ensure that, if the Bill passes, there are good records of all applications for assisted dying and that they are readily available to the medical examiner. Some Members will know exactly what the medical examiner does, but I note for the record that it is a newly created public office, in operation since 2024. The task of the medical examiner is to examine any deaths within the context of healthcare, whether NHS or private, that are not being examined by a coroner.
In light of the magnitude of the decision being made, it is important for records to reflect that. It is equally important that those who will depend on the evidence can access the same evidence on which the co-ordinating doctor made their determinations. Therefore, it is essential that the basis of the decision making is accurately recorded, along with the evidence from other practitioners. For instance, if a palliative care specialist, a clinical consultant and a psychiatrist or psychologist have been consulted, evidence of what they did and said must be readily available, and it is essential that that sits with the record of the co-ordinating doctor. The information must be gathered for the medical examiner to be able to come to their determination with all the evidence before them. It is also vital for the reporting mechanisms to be deployed for the process by which the chief medical officer compiles their report. That is ultimately what Parliament will be able to scrutinise.
Both these amendments would greatly improve the quality of records kept on assisted dying. If I recall correctly, the role of the medical examiner was brought into legislation following Shipman, to tidy up and tighten the records we keep—because clearly we had lessons to learn from them. Also, we have heard in evidence that some other jurisdictions keep good medical records, especially when that speaks to people who are potentially coerced. In one jurisdiction, we had somebody who said that they had never felt a burden, but there were many more who said that they had felt a burden.
There is no doubt that these services will continuously need improving. If we keep these records and understand that these conversations have been had then, ultimately, should this Bill become law, these records would form part of the data collection that we could rely on as parliamentarians and for those service improvements. The amendment speaks not just to the Bill itself, but to ensuring that it continues to do what it is intended to do going forward.
These amendments improve equality in assisted dying. That, in turn, will make it far easier for us in Parliament, for our constituents and for the media to find out what is happening with any assisted dying system. In this country, we believe in open justice and open Government. Assisted dying is much too important to be allowed to operate without strong scrutiny by the press, the public and ourselves in Parliament. I therefore urge hon. Members to vote for both these amendments.
Sean Woodcock
I would like to press amendment 345 to a vote.
Question put, That the amendment be made.
Terminally Ill Adults (End of Life) Bill (Fifteenth sitting)
Sean Woodcock ExcerptsWednesday 26th February 2025
(1 year, 5 months ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 26 February 2025 - (26 Feb 2025)
Danny Kruger
I am grateful to the hon. Lady and am sure that that will be welcomed. It does rather go back to the point that the organisations made at the outset, which is that they wish they had had more consultation earlier on, but I understand why that was not possible in all cases.
Sean Woodcock (Banbury) (Lab)
In oral evidence, Fazilet Hadi stated in answer to a direct question from me that she felt that disabled people had not been listened to properly. Will the hon. Member comment on that?
Danny Kruger
I am afraid that that seems to be the strong impression that many groups have.
I will quote quickly from a submission that we have received from someone at the National Down Syndrome Policy Group, Fionn Crombie Angus. I am not sure whether Fionn has Down’s syndrome, or is perhaps a parent, but the point is a striking one, which we have not heard enough:
“I do feel very sorry for the people who are suffering, but I think the people left behind, the relatives, will be scarred for life if they help people die. That is the main reason why I do not want the Assisted dying Bill to become law.”
That is not specifically relevant, because we are not discussing whether the whole thing should happen, but it strikes me that there, from a member of the Down’s community, we have a point that goes to the heart of our discussion on the Bill: it is not all about the individual who is seeking an assisted death. More people are involved in the decision.
I made a point in an earlier debate about relational autonomy, which is very significant. That particularly applies to this group of people, who will be making decisions in the context of their family and the people around them, including the doctor who is talking to them. That is why it is particularly important to have a wider set of expertise and advice around people with Down’s.
My concern is that Bill, as drafted, thanks to the inclusion of clause 3 and its reference to the Mental Capacity Act, will assume consent and support people with Down’s receiving this intervention. It would have been best if we had accepted the amendments tabled by my hon. Friend the Member for Reigate and the hon. Member for Bexleyheath and Crayford to reverse the burden of proof. Failing that, we need to ensure that the job is done properly. Amendment 368, tabled by my right hon. Friend the Member for East Hampshire, would address that point.
Given the real concern that we have all discussed about the application of the Mental Capacity Act, it is important to have real expertise, time and attention on behalf of Down’s people with the role of an independent advocate. In particular, that should be someone who has expertise in end-of-life decisions for people with Down’s syndrome, which will be a small group of experts, so we might have to end up widening that, I am sorry to say. We need people with proper expertise.
I think the point that my right hon. Friend the Member for North West Hampshire made about the interaction of the Bill with the Down Syndrome Act 2022 was absolutely right. My understanding is that he is right that it applies to authorities, but it strikes me that the purpose of the amendment 368 would be to insist that the provisions of the Act apply in the case of individuals as well.
My right hon. Friend may be right that there could be complications, so it would be good to hear whether the Minister agrees with him that we should take this topic away, with the hon. Member for Spen Valley, and see whether the provisions in the amendment can be introduced at a later stage of the Bill or in statutory guidance. However, I would want to hear explicitly from the Minister that he is confident that what my right hon. Friend the Member for East Hampshire was trying to do when he tabled the amendment will be reflected properly at a later stage of the Bill. On that basis, I am happy not to press the amendment to a vote unless others feel strongly that we should proceed.