(2 weeks ago)
Public Bill CommitteesI will speak to amendment (b) to new schedule 2, but before I do, I will address some of what my hon. Friend the Member for Sunderland Central just talked about. To clarify something for the record, Glyn Berry, co-chair of the Association of Palliative Care Social Workers, of which there are 200 members—there are 200 social workers for palliative care in the country as it stands—has not given an endorsement, and has categorically said that the association does not support the panel structure, as it fails to support what the Bill is intended to do on assisted dying. I am happy to send my hon. Friend the reference for that.
The right hon. Member for North West Hampshire referred to panels in particular. I tried to intervene and ask him about this directly, but I will mention it now and I will be happy to give way should he wish me to. He told the Hansard Society that he was not supporting palliative care specialists at an earlier stage, simply because the issue of palliative care would be addressed in the structure of the panels, but that has not happened. I just wanted to put those concerns on the record before I moved on to my substantive speech.
Amendment (b) to new schedule 2, tabled by my hon. Friend the Member for Derby North (Catherine Atkinson), would amend the new schedule, tabled by my hon. Friend the Member for Spen Valley, to ensure that the Official Solicitor will nominate a person to represent the applicant before the panel. As it stands, the new schedule does not require the commissioner to give guidance about the practice and procedure of panels. However, if guidance is given, the panels, under paragraph 8(2),
“must have regard to any such guidance in the exercise of their functions.”
Amendment (b) would remove the relevant sub-paragraphs and replace them with the following:
“(1) The Commissioner must give guidance about the practice and procedure of panels.
(2) Such guidance must prescribe a procedure which in relation to each application appoints a person nominated by the Official Solicitor to act as advocate to the panel.
(3) Panels must have regard to such guidance in the exercise of their functions.”
What effect would this have?
I refer hon. Members to the written evidence submitted by Ruth Hughes, a senior barrister due to be appointed King’s counsel on 24 March. The written evidence number is 161. Ms Hughes notes that she has
“17 years’ experience of specialising in mental incapacity and the law in relation to vulnerable adults”
and that she has
“advised the Ministry of Justice on capacity related issues.”
She describes herself as
“one of the most experienced barristers specialising in the property and affairs of persons who lack mental capacity in the country.”
In this context, it is particularly noteworthy that Ms Hughes has frequently appeared in court instructed by the Office of the Official Solicitor and the Office of the Public Guardian. She says:
“In my professional experience, financial abuse of the vulnerable and those who lack mental capacity, or are approaching the borderline, is depressingly common.”
Ms Hughes is not someone who opposes the Bill at all costs; she seeks to strengthen its safeguards for those at risk of coercion. She states in her evidence that
“whilst I do not oppose the Bill, I am highly concerned that the safeguards proposed are insufficient to protect vulnerable people from exploitation for financial gain. I suggest it would be profoundly disturbing and wrong for Parliament to enact legislation which put vulnerable people at risk of being killed for financial gain without creating adequate safeguards to protect them.”
Those are very strong words from someone who I suspect is not in the habit of crying wolf. If we hear that kind of warning from a senior lawyer with Ms Hughes’s specialised knowledge of protecting at-risk adults, we should certainly listen.
Ms Hughes was a strong supporter of the use in the Bill as drafted of a High Court judge as the authority who would decide on assisted dying applications. She wrote:
“I suggest that the judicial safeguard is fundamentally important.”
She recommended, however, that the Bill should be amended to include five additional safeguards. I am pleased to say that my hon. Friend the Member for Spen Valley has accepted one of the five proposed protections: the requirement to hear from the person who wishes to die. Ms Hughes’s fifth recommendation bears directly on the amendment we are discussing. She says that the Bill should be amended to include an advocate who would
“ensure that the evidence in support of a claim is appropriately tested.”
Ms Hughes made that recommendation when my hon. Friend was still advocating for a High Court judge, rather than a panel, as the arbiter, but I do not see that the change from court to panel has in any way weakened the argument she made for an independent advocate. Explaining why she wants to increase safeguards, she says that in the Bill as drafted
“there is likely to be significantly less scrutiny of a decision by the Court in relation to assisted dying than there is for example currently in relation to a decision of the Court of Protection to withdraw life-sustaining treatment from a person, or even a decision as to where a person lacking capacity should live or with whom they should have contact.”
Ms Hughes said that one problem was that
“importantly, there is no person appointed to assist the Court to consider and test the evidence before it. Our Court system is inherently adversarial. Generally, two or more parties to a dispute will present evidence and argument to the Court and the Court will make findings of fact on the evidence and come to decisions on the law in accordance with those arguments. The Court is not hidebound, but equally it is not set up to obtain evidence itself. A scheme which does not provide for an independent party to consider the evidence and present arguments against an application will be unlikely to be robust and will not be well designed to identify, for example, a lack of capacity or the existence of coercion or pressure.”
This part of Ms Hughes’s evidence seems to be particularly important:
“Doctors, for example, may not be well placed to identify coercion, pressure or control. In my experience they are often missed by solicitors taking instructions for the making of gifts or wills. The best solution, perhaps the only good solution, to this problem would be to require the Official Solicitor to act as advocate to the Court in cases brought under the proposed legislation.”
It would be helpful if we explained the term “advocate to the court.” The Ministry of Justice published the following explanation of what an advocate to the court is and what they do, based on a 2001 memorandum agreement between the Attorney General and the Lord Chief Justice. The Ministry said:
“A court may properly seek the assistance of an Advocate to the Court when there is a danger of an important and difficult point of law being decided without the court hearing relevant argument. In those circumstances the Attorney General may decide to appoint an Advocate to the Court…It is important to bear in mind that an Advocate to the Court represents no one. Their function is to give to the court such assistance as they are able on the relevant law and its application to the facts of the case.”
We should all see the advantage of being able, through the Official Solicitor, to give the panel the assistance of specialist lawyers. We should particularly see the advantage of the Official Solicitor being able to appoint barristers who are experienced in cases where capacity was in doubt or where people were possibly being coerced.
The Ministry of Justice explanation goes on to say:
“An Advocate to the Court will not normally be instructed to lead evidence, cross-examine witnesses, or investigate the facts.”
The word “normally” is important in this context. The advocate will perhaps not carry out these functions when acting to advise assisted dying panels, but we should note that the Ministry’s guidance does not state that they will never carry out such functions. As we have remarked more than once, we are in unmarked territory here.
I will end by quoting some more of Ms Hughes’s evidence, because it is clearly written by an expert in their field. She says:
“In my experience it is not uncommon where a vulnerable person is controlled or is lacking capacity for the person to be apparently expressing wishes in a clear and forceful manner. This can easily be mistaken for a person acting freely and with capacity.”
That statement is a powerful counterpoint to some of the confident claims we heard from witnesses about it being relatively easy for doctors to detect coercion. Some of the witnesses from Australia and California were particularly noteworthy in that regard.
Ms Hughes goes on:
“In short, the risks of the Bill are real and substantial. The challenge for Parliament is how to mitigate them. The current drafting is inadequate.”
That is evidence we should not ignore. It comes from a distinguished lawyer who is not an opponent of the Bill but who fears that, as drafted, it will not protect the vulnerable. She has offered us what seems to be a workable solution to the problem that concerns her: create a mechanism to involve the Official Solicitor. Amendment (b) to new schedule 2, tabled by my hon. Friend the Member for Derby North, would allow us to put that into practice. I hope that all Committee members can support the amendment and increase the protection that the Bill offers to vulnerable people at risk of coercion.
It is a pleasure to have you here this afternoon, Ms McVey. I did not intend to make a contribution, but given the number of contributions that have been made, I wanted to respond to them. It has been a really interesting and important sitting.
My hon. Friend the Member for Ipswich is right. I see the panel as a genuine attempt to respond to the evidence we heard in the witness sessions and improve the process. I take that absolutely as read, particularly in respect of the evidence from Rachel Clarke, whose view was that coercion is happening and that we should take the NHS as it is, not as we would like it to be. I see the attempt at introducing a panel as a response to that.
The right hon. Member for North West Hampshire is absolutely right to state that if there is a moral imperative to do something, Parliament should look at passing it and then the public services should figure out how they implement it afterwards. He is right in that. There is obviously a question about whether there is that moral imperative, but he is right to point that out.
Although I take the panel as a sincere attempt to strengthen the Bill, I feel that, as put before us, it is not strong enough. That is why I spoke yesterday to amendment (d) to new clause 21, tabled by my hon. Friend the Member for Derby North, which would ensure that the process was done properly and robustly. Nobody wants to see people dragged in front of a court when they are unwell, but there is the matter of safeguarding, and we do have a concern over coercion. It is integral to ensure we have public trust, so I urge the Bill’s proponents to consider those concerns again.
Having thought about it, that would be my preference. I am in a difficult position in that there is a lot to be said for the panel, and it would improve the process in many ways, but I cannot get around the fact that the judicial aspect was put strongly before Parliament, and ensuring that we would have those safeguards provided reassurance to Members. When I have been out on the doorstep talking to people who are in favour of the Bill—people who wanted me to vote in favour of it—they have said to me that they think the proposal is safe because it includes two doctors and judicial oversight. That does come up, which is why I think we need to keep judicial oversight in the Bill. I do, though, I recognise the very genuine attempt by my hon. Friend the Member for Spen Valley to introduce the panel to improve on some aspects and address the concerns expressed in the witness testimony.
If I may, Ms McVey, I will speak to the issue of the judicial oversight of the panel and the whole of new clause 21. I would like to understand something, and perhaps the Minister or my hon. Friend the Member for Spen Valley could help me. We have been talking a lot about judicial oversight. My concern is that even if we had judicial oversight, there is no liability if something goes wrong. We would have had judicial oversight, but now we have panel oversight—non-judicial oversight—of the decision. Even then, what if somebody went down the assisted dying route and an issue was raised afterwards? What recourse would anybody—family members and so on—have to hold anybody liable if they did something wrong, including, potentially, the commissioner?
(3 weeks, 1 day ago)
Public Bill CommitteesI 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.
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.
(1 month ago)
Public Bill CommitteesThe crux for me is that at Second Reading, when the Bill was voted on, many Members cited that one of the central planks to that debate at the time was the six-month prognosis. The amendment would increase that to 12 months. As I have said, my concerns are that we are only three months on from that conversation and we are already trying to expand the Bill, which is why I would not support the amendment. I have said quite a bit on amendment 234, so I will leave it.
I will now speak to amendment 48, which I tabled. Under the current wording of the Bill, a person is terminally ill if their death
“can reasonably be expected within 6 months.”
My amendment would change that so that for a person to be considered terminally ill their death would have to be
“expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”.
One of the risks that confronts the Bill is that of misdiagnosis. That is not some remote possibility. Let me go into detail. As hon. Members know from the evidence brought before the Committee, prognosis is not a precise science. Even with physical illnesses, determining life expectancy is highly unreliable. Government data from the Department for Work and Pensions reveals that one in five people given six months to live are still alive after three years. A study spanning 16 years found that doctors wrongly predict how long terminally ill patients will survive in half of cases. Out of 6,495 patients who were predicted to die within six to 12 months, more than half—3,516, to be precise—lived longer than expected. If the Government themselves cannot accurately determine terminal illness for benefits, how can we rely on such predictions to justify ending lives?
Studies cited in written evidence submitted to the Committee have found that clinicians are routinely inconsistent and inaccurate in their prognostic assessments, often underestimating survival. Professor Katherine Sleeman, a palliative care specialist, underlined that point in her evidence to the Committee. Doctors face considerable difficulty in prognosing whether somebody is in the last six months of their life. Professor Sleeman cites studies based on large samples of patients for whom doctors prognosed life expectancy. The studies found that 47% of the patients whom they predicted to have six months to live in fact lived for longer than that—in some cases considerably longer.
I would argue that there is a danger in using the standard of prognosis currently in the Bill. The current research into doctors’ prognoses indicates that almost half of their estimates that a patient has six months to live are incorrect. We do not want people to choose assisted dying on the basis that they have only six months to live when a very high proportion of them will in fact live longer if they are not given assistance to die by taking a lethal drug or drugs.
My amendment would hold doctors to a higher standard of certainty. Under that measure, they would be explicitly held to prognosing that death would occur with “reasonable certainty” within six months, and that that would be true even if the patient underwent all recommended treatment.
I think we all accept that prognosis is quite difficult, but one reason why I think this is fundamentally important is that a member of my constituency Labour party was given a prognosis of 12 months in 2012. Last year, they were out delivering leaflets for me in the general election. That is why it is so important that we make sure we get this right. I am sure that my hon. Friend has examples of her own. Is that what is guiding her to press this amendment?
It is absolutely what is guiding me. I am sure we all know people who were told that they had six months to live and have lived a lot longer. We have heard stories of people who were told that they had six months to live and lived beyond 20 years more. We have heard lots of tragic cases, for example in the world of Dr Jamilla Hussain, that would really benefit from the Bill’s being available to them. But equally, there are other families whose loved ones have survived—and not just survived, but thrived for years and years. In fact, a close friend of mine, who happens to be a constituent of my hon. Friend the Member for Spen Valley, was diagnosed not to live very long. It was an emotional time for her daughters. Eighteen and a half years later, she is still alive, well and thriving.
(1 month, 2 weeks ago)
Public Bill CommitteesI have to respectfully disagree with the right hon. Member that this is a settled position. I also challenge, on the record, what the Minister said. I struggle to understand how the Minister and the Government can say that this is a settled position without having gone to consultation on the Bill and without having an impact assessment. That does not satisfy me. My role when I agreed to be on the Committee was to come in to scrutinise and help strengthen the legislation. In doing so, these are the things that I am pointing out, because the safeguards are not strong enough for me.
I come back to the Court of Appeal. This would be a medical intervention, albeit to end somebody’s life. It would be administering a lethal drug to end somebody’s life, and it would be done by medics. Medics are involved in every stage. If there is case law that has already established that doctors have to look at undue influence in medical decisions, then I say to every single person on the Committee: what are we resisting? When the Court of Appeal has already said so, why is the Committee debating keeping this language out because it makes things complicated?
Let us go back to the words of Dr Jamilla Hussain, who gave evidence to the Committee. She is a clinician, and she absolutely accepts that there are some people who would really benefit from this law. As a clinician, she wants to get there. Indeed, I spoke to Professor John Wright, and he said, “Naz, absolutely—this is where we need to be.”
My hon. Friend is making a very powerful argument. She is absolutely right to focus on protecting the vulnerable people who this law might apply to. She has touched on medics. I also want to mention the state and its role in what we are talking about. For example, I am opposed to capital punishment, and I link this discussion to that because we are talking about the state providing an individual with a method by which they can end their own life, such as by handing them a pill. I am concerned that, if we are not taking these safeguards seriously, we are abandoning vulnerable people by allowing the state to aid and abet the misuse of the Bill against them. Does my hon. Friend share my concerns?
I share my hon. Friend’s concerns about the Bill not being tightened and fit for purpose. We cannot afford for those people to slip through the net. One woman’s death is one too many. One older person’s death is one too many. That is the bar we have to set.
I come back to the words of Dr Jamilla: she said, “Yes, absolutely.” Every single Committee member, and anyone familiar with this debate, found it heartbreaking to listen to those who came in to give testimony about how members of their families died. Those stories will stay with us forever, and rightly so. That is why, in principle, I am supportive of where we need to get to with the Bill. However, as Dr Jamilla said, we cannot get there by ignoring this big lot of people with vulnerabilities and inequalities, who would absolutely need this legislation. We need to fix the inequalities first.
Let us be honest: as legislators, we know that we will not fix every ill in society, otherwise we would not need a police force. We would not need laws if everybody behaved as they should and supported each other. However, it is incumbent upon us, as legislators in this place, to try our best.
Nobody came to this Bill Committee thinking it was going to be a walk in the park. We certainly did not know that we were going to get evidence throughout it, and plenty of challenges are popping up. We came to this Committee—I came new to the subject—because it is of such importance. I sat in the Chamber for five hours on Second Reading, bobbing, but I did not get the chance to speak—and that happened to another 100 colleagues, who also did not get to speak. However, those who made contributions—whether they were for the Bill, concerned about the Bill or were clearly not going to support the Bill—did so because they feel very strongly about it. That is our responsibility.
I come back to amendment 23, which was tabled by the hon. Member for Reigate: we should really consider adding it to the Bill, because that would strengthen it. The amendment does not dilute the Bill, and it does not add another hurdle given that the Court of Appeal has already said that there is a responsibility to look for undue influence. I do not understand the resistance to the amendment, which I will support.
(1 month, 2 weeks ago)
Public Bill CommitteesI completely agree.
Professor Owen also said:
“I have had over 20 years of research interest in mental capacity. When I look at the issues relating to mental capacity with the Bill…the other important point to understand is that they are very novel. We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q286.]
Like my hon. Friend the Member for Bexleyheath and Crayford, I am certainly not a doctor, although I have experience in the NHS, but I do know that we do not have psychiatric experts or experts on capacity in this Committee.
Earlier, the hon. Member for Solihull West and Shirley made a point about public confidence in the Bill. In oral evidence, the representatives from the Royal College of Psychiatrists—we nearly did not hear from them; we had a vote about whether we would, and they were added later—made it clear that they have severe doubts about applying the Mental Capacity Act to the Bill. Does my hon. Friend share those concerns?
I absolutely share those concerns, which is why I pressed the issue to a vote. As I have explained to my hon. Friend the Member for Spen Valley, I am grateful that the Royal College of Psychiatrists gave evidence. It said that the Mental Capacity Act
“is not sufficient for the purposes of this Bill”.
In oral evidence, Professor Jamilla Hussain, an expert in palliative care and health inequalities, highlighted an inequity in assessment using the Mental Capacity Act. She said that she does not think that
“the Mental Capacity Act and safeguarding training are fit for purpose. For something like assisted dying, we need a higher bar—we need to reduce the variability in practice.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.]
My hon. Friend the Member for Penistone and Stocksbridge mentioned the process in the Bill being repeated eight times, but I want to bring us back to the issue of capacity in relation to coercion. The Royal College of Psychiatrists said:
“In any assessment of capacity, we must also consider whether a person is making the request because they consider that they are a burden or because they do not consider that they have access to effective treatments or good-quality palliative care. At a population level, palliative care, social care and mental health service provision may impact the demand”
for an assisted dying service. Although I appreciate that we will debate this in greater detail later, on clauses relating to coercion, it relates to the issue of capacity. In her evidence to the Committee, Chelsea Roff, a specialist in eating disorders, said:
“One thing I would like to highlight in our study is that all 60 people who died”
by assisted dying after suffering from anorexia, who were mostly young women,
“were found to have mental capacity to make the decision to end their life, so I worry that mental capacity will not be an effective safeguard to prevent people with eating disorders from qualifying under the Bill.
I also note that Oregon and California, where I am from and where we have found cases, have an additional safeguard to mental capacity. That is, if there are any indications that the person might have a mental disorder, that person must be referred for a mental health assessment.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 141, Q177.]
My hon. Friend the Member for Stroud, in his rebuttal to my hon. Friend the Member for Bradford West, described assisted dying as “medical care”. Personally, I do not regard assisted dying as medical care. Does my hon. Friend agree?
I am still having that debate in my head, and I am not convinced. I will not digress—I will come to the point—but there is a conversation about whether it is “treatment”, “assisted suicide” or “assisted death”. Those terms have been bandied about. I genuinely think that, ultimately, we have to use the word “suicide” because we are amending the Suicide Act 1961. I appreciate the context in which the promoter of the Bill puts it forward, but the truth is that it is about taking one’s life, so that is how I respond to that question.
To come back to the amendments tabled by the hon. Member for East Wiltshire, the reason why I will support them is that I have way too much experience of people in vulnerable positions, and I have a lifetime of experience of seeing what happens. I do think there are options when somebody has a diagnosis of terminal illness. The prison systems are set up to be able to give them compassionate leave and to explore other avenues. Once they are outside that system, they can access support and have their vulnerability reduced.
(1 month, 3 weeks ago)
Public Bill CommitteesQ
“I have studied the reports from, and spoken with medical and nursing clinicians from US and Australian jurisdictions and am satisfied that external coercion has never been reported or led to a prosecution.”
The state of Oregon carried out a survey of people who died under its assisted dying scheme in 2023. Its report stated that 43% of those who chose to die said they did so because they felt they were, and I quote directly from the term used in the survey, a
“Burden on family, friends/caregivers”.
Is that something you are prepared to see happen in the UK?
Dr Ahmedzai: It goes absolutely to the core of being British—we are always saying sorry, aren’t we? We apologise for everything. In everything we do, or everything we might do, we think we might be treading on toes and are always worried about being an imposition. All my professional life, I have come across patients and families in which there clearly is that feeling going on, usually with an older person or even a younger person who is drawing a lot on the emotional and physical resources of the family. It is natural that we feel a burden; it is impossible to take that out of human nature.
The issue is, does feeling that one is, or might become, a burden something that could influence a decision as major as looking for assisted dying? In that respect, I look to all those jurisdictions that have been offering assisted dying in different ways, and I have never seen a single case ever taken to the police or prosecuted. Evidence I have heard from other jurisdictions shows that, yes, it is possible—we all go through life feeling that we are a burden on someone—but it does not influence people in this particular decision. If anything, I am told that, in other jurisdictions, families are saying, “No, don’t do it.” They are exerting negative coercion—“don’t do it” coercion—but people are saying, “No. It’s my life. I’ve made my mind up.” They have mental capacity, and we respect that.
Q
Dr Clarke: Based on my clinical experience, I would push back on that in the strongest terms. I am the kind of doctor who believes there is nothing to be gained from sugar coating reality. We have to be absolutely honest with patients and the public about shortcomings, failings and areas where my profession and the rest of the NHS are getting things wrong.
It is my clinical experience that not only are the majority of doctors not necessarily trained in spotting coercion explicitly, but they are often not trained explicitly in having so-called advance care planning conversations with patients around the topic of death and dying, and how a patient would like the end of their life to proceed. It is almost impossible for me to overstate how much avoidable suffering occurs right now in the NHS not because of a lack of resources for palliative care—although that is an enormous problem—but because of a lack of confidence, skill and expertise among the medical profession writ large with these very difficult conversations.
We are all familiar with the idea of death and dying being a taboo in society. People are scared of it, and they hesitate to bring it up with their friends and family. In my experience, many medical students and doctors also suffer from that anxiety. They are scared, and they find it a taboo subject. What that means is that sometimes coercion occurs because the doctor—the consultant responsible for this person’s care—will not even bring up the fact that they think the patient is dying, because it is an uncomfortable conversation. Conversely, I have worked with senior hospital consultants in the NHS who have deliberately prevented our team from accessing their patients, because they believe that the hospital palliative care team wants to kill the patients, and that if I go and see the patient, I will give them a lethal dose of drugs.
These are the kinds of extraordinary misunderstandings and failures to prioritise patient autonomy that are happening now. That is even before we get started on conversations around whether someone would like to consider assisted dying, so it is a huge problem.
Q
Dr Spielvogel: No, I actually do not think that you are right. When we are talking about lifesaving interventions such as chemotherapy or dialysis, that is not correct. They are bound by law to cover all things that are medically necessary. They do not say, “You have gotten six months of chemo. We are not paying for any more.” That is not how it works.
Q
We heard from experts earlier about the paucity and lack of provision of care across the country. Certain people can get access to very good care, but too many people struggle to, particularly people of certain ethnic backgrounds, people on low income, and so on. Please correct me if I have misinterpreted your views, but from what you have said so far, it sounds as if you think that exercising the right to assisted dying because there is a paucity of appropriate care in your locality, or because you cannot afford it, is a perfectly legitimate exercise of autonomy, based on the society around you. Would that be a fair assumption of your views?
Dr Kaan: I think that is not an entirely fair representation of what I am saying. Yes, we do need respect for people’s autonomy and the reasons they may come to this choice, but I also think that from what I have heard this morning, it sounds like there is a conception that people choose assisted dying and then they do it. What I see, by and large, is that people want to have this as an option. It is an option among the other options of hospice palliative care or palliative treatments. The availability of this as an option often brings people tremendous relief from their suffering—just from the anxiety over how they might die, or what suffering might be in store.
I had a case of a woman with ALS, or amyotrophic lateral sclerosis. She was very afraid of how she might die with that condition, and she felt like she might suffocate to death. She was so focused on having the option of aid in dying because she was terrified of what might be in store for her. We were able to incorporate her into a hospice that offered comprehensive end-of-life care, including the option of aid in dying. We got her through the process, we had the medications available and she told me how much relief she felt from having it as an option, but ultimately she decided not to use it. She decided that she was getting really good care from her palliative care and hospice teams, and that her symptoms were well controlled. Although she was extremely grateful that she knew the medications were available should she decide to use them, she did not end up needing to use them or wanting to use them.
That is the reality of what is happening in a lot of cases where this is an option among other options. The availability of this option is, in and of itself, a palliative care treatment for many people. On whether or not wanting to avoid being “a burden” to a family member or to a caregiving team is a valid reason to pursue this, yes, I think that is a valid reason among many for people who have a value system that highly orders that.
Dr Spielvogel: I just wanted to add something, if I may. I have heard this argument—or rather, this concern—a few different times, and it strikes me as what is called a false dilemma logical fallacy: that there is either/or, when in reality there are many alternatives that people can choose from. Saying “If we don’t have all of these types of care, we shouldn’t offer this option” is like a hospital that does not have sufficient amounts of IV pain medications saying to a labouring woman, “Well, we don’t have enough IV pain medications, so we are not going to offer you a labour epidural, because that is a false choice.” That does not actually make sense.
Look at it from a patient’s perspective. Think about a patient who is dying from terminal cancer, is in lots and lots of pain and does not have any good options for their pain control. Imagine saying to that person, “We don’t have all of this care or this option over here available to you, so we are not going to allow you to have an assisted death”, even if they are telling you, “This is what I want. Why won’t you give this to me?”. It does not make sense to remove this as an option just because all of the options might not be available to everyone all of the time. It is a bit cruel when you think about it from a patient’s perspective.
(2 months ago)
Public Bill CommitteesJust following on from the speech of the right hon. Member for North West Hampshire, I would not read the situation as a misunderstanding by the hon. Member for East Wiltshire. I read the motion to sit in private not as an informal discussion, but as a very formal discussion. I am grateful to the lead Member for the Bill, my hon. Friend the Member for Spen Valley, who before this meeting explained to me what has now been explained here—about the issue of people’s availability, privacy and so on. But I do not suspect that we will be going into those details. If people are not available, we do not have to discuss why they are not. We do not have to discuss their personal lives. I am not sure that that is a good enough reason not to have a discussion in public. I trust colleagues across the Committee to be collegiate enough and big enough to refer to witnesses with respect. I think that is a given, considering the way in which we have conducted the Bill so far. I therefore do not support the motion to sit private.