Terminally Ill Adults (End of Life) Bill (Fourteenth sitting)
Naz Shah ExcerptsWednesday 26th February 2025
(1 week, 6 days ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 26 February 2025 - (26 Feb 2025)
Dr Opher
Yes, I totally accept that. The Mental Capacity Act is set so that we assume capacity and look for evidence of lack of capacity. The great danger with the amendment is that it would change a whole raft of very well used provisions. As Professor Whitty said, the Act is used up and down the country every day; I have used it myself many times, and taught it as well. If we change the emphasis from the presumption of capacity to the presumption of incapacity, which is what my hon. Friend is suggesting, that is a major change in the Act.
Naz Shah (Bradford West) (Lab)
Given what my hon. Friend has just said—that he accepts the premise of my hon. Friend the Member for Bexleyheath and Crayford that the doctor would have to assist—can he help me to understand where that leaves the issue of autonomy if a doctor is, as he has agreed, allowed to assist in the decision?
Dr Opher
The way the doctor assists, if making a mental capacity assessment, is to try to tease out the four concepts. Does the patient understand what they are being asked to agree to? Sometimes mental capacity assessments are very straightforward and last five minutes; sometimes they last an hour. I have done one that lasted about 90 minutes because it was really important to tease out whether the patient genuinely understood what they were doing. That is the sort of assistance I am talking about. It is not about trying to persuade them to make a decision that I think is the right decision; it is just making sure that they understand it, can remember it and so on.
Dr Opher
Well, that was disputed by other psychiatrists. We are asking questions about whether the Mental Capacity Act is safe and correct for the Bill. This whole Committee is about making the Bill safe. None of us would dispute that. However, I think that if we accept the amendment, the Bill will become less safe because the amendment would change a massive piece of legislation and therefore have a number of repercussions that we do not understand.
Dr Opher
I understand what the amendment is trying to do; my argument is that it will not achieve that because it will muddy the waters of a mental capacity assessment, which will make how we do it less safe. I would also like to return to Professor Whitty’s comments and to say that in the majority of cases mental capacity is very clear. It does not actually take very long to assess whether someone has mental capacity.
The Chair
Can the hon. Gentleman be allowed to fully answer the questions that the hon. Member for East Wiltshire and the hon. Member for Richmond Park asked, before we have an intervention on another point?
Dr Opher
It is really important to understand that for the majority of people mental capacity can be assessed reasonably quickly because it is very clear whether they have it or do not have it. What we are talking about, I think, is a small proportion of patients in which it is unclear whether they have mental capacity. There is scope in the Bill for those circumstances, when the patient should be referred to an enhanced level of mental capacity assessment by a psychiatrist or a psychological nurse. In that way, it makes it much safer. We do not need to redesign the Act for that small number of patients because we already have a very safe route to assess capacity.
Naz Shah
I thank the hon. Gentleman for giving way; he has been generous with his time. I do not know whether the hon. Gentleman has seen the evidence from Alex Ruck Keene KC on mental capacity. He sets out very clearly the myths around mental capacity, one of which is that mental capacity is well understood. He argues that it is not. How would the hon. Gentleman respond to that?
Dr Opher
I think that in most cases mental capacity is very well understood, and it is very clear, as I have said. I would say that, as practising clinicians, almost every GP has to do it. I would not sign up a doctor in training if they could not do it. I think it is a little bit rich to suggest that we cannot assess capacity. I agree with many of the comments that have been made about assessing capacity in more difficult cases for most doctors, and I think we do need an avenue, in those situations, to get further opinions.
Naz Shah
The hon. Gentleman said it would be rich for people to say that capacity cannot be assessed. That is not the case. I am not convinced about that, and I am not sure, from the evidence I have seen, that anybody is saying that anybody is not capable of assessing capacity per se. Would the hon. Gentleman agree that the argument is about assessing capacity for this Bill in particular? That has not been tested. The Royal College of Psychiatrists is very clear, as are many other experts, including legal experts, that the Bill has not been tested for that purpose. Therefore, the Mental Capacity Act does not meet the purpose for the Bill.
The Chair
Order. I will give people the opportunity to explore this issue but, as I have said, interventions are not mini speeches.
Naz Shah
I will pick up on some of the points to which my hon. Friend the Member for Stroud referred, given his expertise. We heard from three senior psychiatrists during the evidence sessions, who were very clear; I have already mentioned much of their evidence. The Royal College of Psychiatrists’ written evidence states:
“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of for AD/AS prior to the passing of legislation and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.”
It goes on to say that the capacity to end one’s life is “entirely different” from assessing for the capacity of deciding treatment.
The Bill moves us into new territory. We need a definition that meets the criteria of what we are assessing, which is to end one’s life. That has never been applied in this country. The Mental Capacity Act, as it stands, requires assessors to presume that someone has capacity until incapacity can be proven, as my hon. Friend the Member for Bexleyheath and Crayford referred to in moving amendment 322.
Dr Annabel Price, Professor Allan House and Professor Gareth Owen all expressed doubts about the use of the Mental Capacity Act to assess whether a person is in a fit state of mind to undertake assisted dying. Because there is nothing in the current medical assessment that requires careful explanation of these factors, there is a real worry that there will be no opportunity to change them. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground.
Professor Owen said:
“I have looked at mental capacity a lot in research, and there is no experience”.
The reference to the Mental Capacity Act in clause 3 puts us into an area where there is no experience of the central capacity issue under consideration. He said:
“It is very important that Parliament be clear-eyed about that.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q287.]
He further said that we are in “uncharted territory”, because the ideas in the Bill are very novel. That is the hub of the Bill: it requires assessors to assume capacity as a starting point. To make the Bill the safest in the world, that is not the yardstick that we should be applying, according to very senior psychiatrists across the country.
Alex Ruck Keene KC also provided evidence to the Committee. He set out some of the myths in a video. There are a few things in this for me. One is the article in The Telegraph, which senior psychiatrists alluded to, that suggested there was a shortage of specialist psychiatrists. We have already had a conversation about the shortage of judges, but we are now having a conversation about the shortage of psychiatrists. Should the measure remain in the Bill as it stands? I would like to understand from the Minister whether that is something that has been assessed, given that we do not have an impact assessment.
Alex Ruck Keene referred to the National Institute for Health and Care Research, which funded a number of research projects in 2022 under the umbrella topic of implementing the Mental Capacity Act in practice—the rationale being that
“The Mental Capacity Act…is designed to empower and protect people who may lack the mental capacity to make their own decisions about their support and treatment, ranging from everyday issues to more serious, life-changing decisions.”
Evidence has highlighted several aspects of the way that the assessments are being carried out that are not compliant with the Mental Capacity Act. If we already have issues with how the Act is being implemented in the everyday work of the NHS and psychiatrists, how many mistakes will be made if the Bill goes through as it is? How much potential is there for mistakes to be made when assessing the capacity of those who are most vulnerable?
The Care Quality Commission in its most recent “State of Care” report in October last year said:
“The Mental Capacity Act 2005 (MCA) directly affects the lives of millions of people. Everyone providing care to people over the age of 16 must be familiar with this vital piece of legislation, which introduced rights and protections for people who may lack mental capacity. A decade after the House of Lords report, we continue to find a lack of understanding of the MCA among providers.”
That is the most recent research, and it is telling us that we have not got this right.
The Mental Capacity Act was passed over 20 years ago in 2005, but is still not understood properly or being applied for the reasons it was supposed to be. If we have not got that right in 20 years, how can we as a Committee be assured that the legislation will be applied properly when it is applied to something that it has never been applied to before and that has not been tested? How can we say that we should be rejecting an amendment that would change that and raise the bar for people? Ultimately, this affects people who are vulnerable; I will come on to that in more detail in the next group of amendments.
That is a real concern, which is why I urge Committee members to support amendment 322 to get the safeguards right. We spent hours talking about capacity, but the amendments to clause 1 were not accepted. This amendment comes from experience, and I really appreciate the personal experience of my hon. Friend the Member for Bexleyheath and Crayford on this issue, because he speaks about the reality. We are not the experts, and we should be relying on the experts who give us their witness testimony.
Daniel Francis
In the evidence from Mencap and in large swathes of the written evidence, we have heard grave concerns from communities representing people with learning disabilities about how this legislation was enacted during covid, particularly with “do not resuscitate” notices. Evidence shows that people with learning disabilities were far more likely to have those placed on them. The written evidence we have suggests that that is due to a misinterpretation of the Mental Capacity Act or bias within the medical community. Can my hon. Friend comment on that?
Naz Shah
My hon. Friend makes a very valid point. Another issue that we have not got to yet, but that we will be looking at, is the doctors who do not want to take part in this process. We must consider whether there will be a bias; he is right to point that out. Will there be a subconscious bias towards helping people? My hon. Friend the Member for Stroud suggested earlier that doctors assist a person to reach a decision, according to the Mental Capacity Act. This is the crux of it for me: when a doctor is assisting a person in their best interests to come to a decision about treatment, for example, that is a different test from what we are testing here.
Lewis Atkinson (Sunderland Central) (Lab)
I share the concerns of my hon. Friend the Member for Bexleyheath and Crayford about the use of DNRs—what happened during covid to people, particularly those with disabilities, was a disgrace. Does my hon. Friend the Member for Bradford West accept that this is an entirely different situation, however, in that people must actively seek it, be tested multiple times, and express a wish for it? The situation with DNRs involved medical professionals making decisions on behalf of a patient without their input.
Naz Shah
Apologies. My hon. Friend is right that those were different situations, but I remind him of the evidence that we heard from Dr Jamilla, for example. I am glad that he reminded me of this point, because although what happened in covid was done under different circumstances—I agree that what happened with DNRs was a “disgrace”, in his words—that is where the trust in NHS providers was lost. That leads me on to my next point: where there is no trust, there is vulnerability, and that vulnerability, in turn, affects capacity.
That brings me to what Alex Ruck Keene said about vulnerability. If people feel—as they did during covid-19—that they have been DNR-ed and that, as some have said, “They’re going to kill us off!”, then the vulnerability directly impacts on their capacity. I accept that, as my hon. Friend says, these are different situations, but the argument is strong and speaks to supporting this amendment.
There is a myth that mental capacity is well understood, but we have gone through that—there are a lot of myths about mental capacity. The reason that mental capacity is always difficult to assess, according to Alex Ruck Keene, is because 85% of capacity determinations by those who actually understand the law are relatively straightforward—that concurs with the point of my hon. Friend the Member for Stroud—with difficulty arising usually because of not having enough time or not listening to the person. Some research was conducted into the experience of liaison psychiatrists through an interview study across three jurisdictions, which concluded that there are four key sources of difficulty in capacity assessment, spanning both clinical and ethical domains.
Those four sources included, first, a difficulty determining whether the decision is the patient’s own or driven by illness. That is important because we are talking about people who are terminally ill, so their decision-making processes may be impacted because of that, or because there is a vulnerability—either could be possible. The 15% of mental capacity determinations that are difficult include for such people. There may also be, secondly, a difficulty in applying ethical principles or, thirdly, a difficulty in avoiding personal bias. Again, that speaks to the point of my hon. Friend the Member for Bexleyheath and Crayford—if doctors are already signed up to this Bill and believe in it, will they have a personal bias? A lot of doctors and psychiatrists—according to the last article I read—are saying that they do not agree with it.
Danny Kruger
The hon. Lady is absolutely right. It is an interesting irony of the Bill that it is presented as the free choice of individuals, but actually it imposes all sorts of obligations and repercussions on other people—the very term “assisted” conveys that. Many other people will be affected by the decision to take an assisted death. She is right that it would be very helpful for the doctors to be confident that they have done their job properly because they have a clear list of communications they are expected to make.
My understanding is that doctors are indemnified against legal challenge in consequence of decisions they make around this; that is an interesting point and one that I am uncomfortable with, but we will come to that later in the Bill. Leaving lawsuits out of it, from the point of view of the doctor’s professional conduct and their peace of mind, it would be very helpful for them to have it clearly specified what information they are required to convey.
I am grateful for Members’ interventions, and I appreciate the good faith and good sense that has been spoken, but I have not yet heard any reason for objecting to this amendment, other than the possible question of its being otiose and not necessary. That is not a sufficient reason to object to an amendment. We should not be objecting simply on drafting grounds. There can be tidying-up exercises later if there is repetition. I have not heard objections to the content of the amendment, and I would very much welcome Members’ support.
Danny Kruger
Exactly. A few more words of clarification should not be regarded as burdening the Bill or creating bureaucratic obstacles for doctors and patients; the amendment actually specifies more explicitly what is going on. It is almost akin to the debate we had on amendment 181 and those dangerous words “for the avoidance of doubt”; that is essentially what this amendment does, but it goes further, because it imposes clearer obligations on doctors to do their job properly.
Jake Richards (Rother Valley) (Lab)
Much has been covered today, and the issue of capacity was debated at length when the Committee considered clause 1, but I do have some observations.
I am sympathetic to the assertion that there should be changes to presumption and burden. Those are things that I have considered and spoken about with the promoter of the Bill and, outside the Committee, with experts who gave evidence to the Committee. I have spoken about them publicly as well; I am very sympathetic.
At the heart of this, we have two options. We could change the burden and presumption in the Mental Capacity Act 2005 for the purposes of assisted dying, rewriting 20 years of case law and medical practice. There is certainly some value to that, but that would be a radical departure from current medical practice, and there are other concerns. The alternative is to put in place rigorous processes and training around the Mental Capacity Act to ensure that it is implemented properly. After some reflection, I err on the side of the latter option, for a number of reasons.
First, I accept that there is debate among psychiatrists about this issue. We heard evidence from some who deem the Act not to be suitable for this new realm—I accept that we are entering new grounds, and I will come back to that point—but many psychiatrists and lawyers working in this area would deem it uncomfortable and unnecessary to depart from the Act.
Secondly, there is an oddity in changing presumption. There is an oddity in someone having to prove that they have capacity to fulfil their own desire. That oddity is one of the reasons that the Act is drafted as it is. It is partly—there are two sides to this coin—to ensure that there is no discrimination, partly to comply with the Human Rights Act 1998 and human rights more generally, and partly to ensure that we do not end up in a medical situation that is patrician, whereby medical doctors take an intrusive view of capacity rather than meeting the individual as they are.
Thirdly, the Bill, when amended—I will come on to the amendments that give me some comfort—will offer more safeguards than the Mental Capacity Act. Amendment 5 to clause 9(3) would ensure a further level of assessment. My hon. Friend the Member for Spen Valley has indicated that she will support that important amendment, as have all members of the Committee. If there is any doubt, there will be a further assessment by a psychiatrist. That goes some way to reassuring me that it is not necessary to rip up the burden or change the presumption in this area.
I want to make an observation about burden of proof, presumption and the nature of the assessment. Professor Whitty clarified his evidence. It is right that the burden and the presumption do not change, but of course the nature of the assessment rightly changes according to the circumstances. Every assessment of capacity is somewhat different, which is why amendment 50 is too prescriptive, in my view.
Of course, we can consider incredibly serious cases involving deprivation of liberty or the ability to conduct litigation. I have worked with parents whose children are being removed and looked at whether they have the capacity to make decisions about how they present their case. It is very dangerous to compare the severity and the profound nature of different circumstances, but let us not pretend that the Mental Capacity Act is not used to assess the most complex issues of capacity every day.
I am very sympathetic to amendment 50. I have met the hon. Member for Runnymede and Weybridge, who tabled it, and the hon. Member for Solihull West and Shirley to discuss it, but I stress that such a prescriptive provision is not appropriate for primary legislation when we are entering new ground. I accept, as hon. Members with different views have said, that we are entering new territory and that this is difficult. I accept that psychiatrists and medical practitioners will have to think long and hard about the nature of the capacity assessments, especially under clause 9(3), when that is activated. That work will have to be done. It has been set out in primary legislation through some of the training clauses, which have already been referred to.
There is no doubt that there will be a lot of work and consideration, but I do not deem it appropriate to have a clause drafted by one psychiatrist, albeit an undoubtedly esteemed and experienced one: the hon. Member for Runnymede and Weybridge, who tabled the amendment. Rather, the work needs to be done as the Bill is implemented over a two-year period. It needs to be done as part of a full consultation with psychiatrists, once the Bill has been passed, and that should be set out in guidance. That is what would usually happen with deprivation of liberty. I do not think it appropriate for primary legislation to set out the factors for a capacity assessment.
Jake Richards
We need to be careful when we say that the Mental Capacity Act is misunderstood, full stop. Let us be clear—
Jake Richards
I am grateful, Mr Dowd.
The evidence that we have received is that this is a test. These are assessments that happen every day across the country. Now, there are more complex assessments, and there will without doubt be areas in which the assessment is not done as rigorously as it should be done, but that is why I am assured by the safeguards in the Bill that if there is any doubt—any doubt—as to capacity at first instance, there will be a full and thorough assessment by a psychiatrist.
Let us think that through for a minute. Any competent psychiatrist trained in this area will no doubt have a sense of what the Mental Capacity Act says and of the normal test for capacity. Someone who is seeking assistance to die from a doctor who has doubts as to their capacity will have been referred. To my mind, it is unfathomable that that assessment, at that stage, would not be rigorous and would not satisfy every Member that it had been done to the correct extent practicable.
Jake Richards
We are debating lots of different things now, rather than just clause 3. There is an issue as to whether in those cases the individuals were found to have capacity, but we are talking about the process by which someone is found to have capacity, rather than what happens thereafter. We have had that debate, and I am happy to have it, but we are talking now about the process by which people are found to have capacity.
This is the problem with interventions: I have lost my train of thought. This is why people do not take them.
Jake Richards
Yes, there are safeguards and mechanisms in the Bill to ensure that and to protect from a culture that would incentivise this practice.
Jake Richards
No, I am not going to, actually. I am taking my rights.
My final point concerns section 1(4) of the Mental Capacity Act and the discarding of the principle about whether a decision is deemed to be unwise. This is an issue we have already debated, but it is really important. Introducing a best interests test is, to my mind, impossible without ending up with a law that discriminates against certain groups. Essentially, it is impossible to do fairly.
I remain to be convinced. If there were an amendment that could do what I think the hon. Member for East Wiltshire wants, I would support it. If there were an amendment that could look into someone’s mind and make sure that they are doing this for reasons that society would deem fit, I would support it, but I think that that is impossible. What the Bill aims to do is assess a person’s capacity and ensure that they are making this decision voluntarily. It also aims to protect them from the influence of third parties and outside sources. That is the only way, if this principle is to be adhered to.
Finally, I will be voting against the amendments, but I will finish where I started. I have genuinely thought long and hard, in particular about the presumption. I have spoken to experts who disagree with me, but in my mind it comes down to whether we rip things up and start again or whether we add rigorous safeguards, practices and processes, which may be a bit more boring but will actually be more effective at protecting any patients who go down this road.
Sojan Joseph (Ashford) (Lab)
I rise to speak in support of the amendments. Having worked as a mental health nurse for 22 years, I completed mental capacity training many times in my career, and I carried out capacity assessments as part of my day-to-day job. I think that the capacity assessment proposed in the Bill is not safe enough. That was one of the main reasons I voted against the Bill on Second Reading. I have spoken to many people who oppose the Bill, and one of their concerns is about the capacity assessment.
We have talked about capacity assessments every day in this Committee. It is one of the key issues that we will need to resolve to strengthen the Bill if it goes through. One of the Royal College of Psychiatrists’ concerns is that capacity decisions are
“opinions with a margin of error and are time specific. A person’s capacity can change”.
I will talk about my experience with those margins of error.
A person’s capacity can be influenced by various factors, including their life circumstances, the medication they are taking or severe pain. Suicidal thoughts due to their mental state or depression can also influence their capacity. I have worked in acute mental health units. Every day, we carried out capacity assessments, including before we let someone out of the ward, whether they were admitted under the Mental Health Act or were receiving treatment as a voluntary patient. If somebody wanted to leave the ward, before the member of staff opened the door, they had to assess that person’s capacity. Sometimes a person might have said, “I am going to kill myself,” and the nurse would have had to decide whether or not they had capacity before opening the door.
My hon. Friend the Member for Bradford West has talked about unconscious bias. The initial capacity assessment when a person comes to a hospital is very important. If a doctor has assessed at the beginning that the person has capacity, the following assessment can be influenced by that initial assessment. I totally agree with my hon. Friend’s argument about unconscious bias in capacity assessments. As Members have mentioned, the Bill proposes many occasions in the process when capacity will be assessed, but I am still not confident that each capacity assessment will not be influenced by the initial assessment. The amendments would strengthen that area of concern.
Naz Shah
My hon. Friend is making a very important speech. Members have alluded to the provision in the Bill that the patient would be present and would potentially have an option to be reassessed. We have heard evidence from various experts on capacity, particularly on the issues of coercion and vulnerability, and doctors have told us that it takes years to build rapport with people. At the second stage, the doctor has to be somebody independent who nobody has met, so how would they be able to tease out whether that person has capacity and whether those other influences are affecting them? Does my hon. Friend share that concern?
Sojan Joseph
I agree that when an independent doctor comes to assess a patient’s capacity and sees them for the very first time, they are more likely to be influenced by the assessment made at the beginning by the doctor who has known them for many days, weeks or months. I agree with my hon. Friend’s argument.
Terminally Ill Adults (End of Life) Bill (Twelfth sitting)
Naz Shah ExcerptsTuesday 25th February 2025
(2 weeks ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 25 February 2025 - (25 Feb 2025)
The Chair
Electronic devices should be turned off or switched to silent. The only cups that I should see are those filled with the water provided in the room—no tea or coffee. Let us continue our line-by-line consideration of the Bill.
Clause 1
Assisted dying
Naz Shah (Bradford West) (Lab)
I beg to move amendment 281, in clause 1, page 1, line 20, at end insert—
“(c) has met with a palliative care specialist for the purposes of being informed about the medical and care support options.”
This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
The Chair
With this it will be convenient to discuss the following:
Amendment 299, in clause 7, page 4, line 17, after “(g)” insert
“and the condition in subsection (4) has been met”.
This amendment is consequential on Amendment 298.
Amendment 298, in clause 7, page 4, line 26, at end insert—
“(4) The coordinating doctor may not take the steps set out in subsection (3) unless they receive confirmation from a palliative care specialist that the person has had a consultation with that specialist about the palliative care options available to them.”
This will require the coordinating doctor to be of the opinion that the person has had a consultation with a specialist in palliative medicine.
Amendment 304, in clause 9, page 5, line 41, leave out “any available” and insert
“the person’s experience of specialist”.
This amendment would require the assessing doctor to discuss the person’s experience of specialist palliative, hospice or other care.
Amendment 311, in clause 12, page 8, line 14, at end insert
“and
(i) the person has had a consultation with a consultant who is a specialist in palliative medicine.”
This amendment would require that a person has had a consultation with a specialist in palliative medicine before the High Court could issue a declaration.
Naz Shah
Amendment 281 would ensure that the patient receives advice on palliative care options from a specialist in the field. Medicine is fast-paced, with innovative and new medicines becoming available in quick succession. Although those in the profession try to keep abreast of developments, it is hard to maintain the depth of knowledge necessary in all specialties. A co-ordinating doctor may or may not have specialist knowledge in palliative medicine. Some courses may provide the opportunity to learn more, but others only touch on palliative medicine—covering it in less than a day of a five-year medical degree. Specialists who are leading in this field of medicine, innovating advances and working to palliate a patient’s symptoms at the end of life will have far greater knowledge of the specialism. Even in this wider debate, many who work in a different field of medicine or in general practice have simply got their facts wrong when speaking about palliative medicine—not through intent but because they have drawn on their own, perhaps out-of-date, experience or simply do not have the competencies to understand all that palliative care can provide.
Pain and symptom control techniques are advancing; in our debates on this Bill, people have articulated instances of poor care rather than what clinical experts are able to achieve. It is therefore essential that a patient has a consultation with an expert in the field of palliative medicine, who can alleviate a patient’s fear, support them with a plan for the end of their life, and discuss how pain and symptoms can be managed. Hearing an alternative approach to the end of life can be life-affirming, help people discuss their fears and concerns about dying, and provide a patient with what they are seeking physically, psychologically, emotionally, socially and perhaps spiritually. Specialists in palliative medicine are trained to home in on the challenges that people naturally have on receiving a diagnosis of terminal illness and are skilled at supporting a patient to explore what end of life could look like for them.
If the Committee does not pass this amendment, it would be placing itself above palliative care specialists when talking about such matters. It would undermine the need for such a specialty in medicine, like a GP who may not know the breadth of palliative medicine options for their patients. The Committee must not assume that it knows those options. Rather, it should enable those with a specialist understanding of palliative medicine to deploy their skills in this process by working through palliative care options with patients before the consideration of a path that will end with an assisted suicide.
Amendment 299 is consequential on amendment 298, which would ensure that a person has a consultation or consultations with a palliative care specialist. Amendment 298 would further embed this into the practice of managing the end-of-life process to provide the patient real choice over their options at the end of life, as what can be achieved through the practice of high-quality palliative care is often significantly different from people’s perceptions—even those of clinicians. Palliative care, like so many fields of medicine, continues to advance in its application and in the steps that can be made available to palliate a person’s pain and symptoms. When pain is difficult to control using oral or intravenous pharmacology, other interventions, such as a nerve block, can result in the absence of pain. A specialist is required to provide such a procedure, but for most people who are in receipt of palliative care, this option is rarely made available. Palliative care is about not just pain and symptom control, but the holistic journey of a patient at the end of life.
Danny Kruger (East Wiltshire) (Con)
The hon. Member mentions the principle that palliative care is a holistic service. Does she agree that, given that the Bill’s advocates—including the promoter, the hon. Lady for Spen Valley—emphasise the need for a holistic range of opportunities for end-of-life care, palliative care needs to be central to that? Rather than suggesting that there is an either/or between palliative care and assisted dying, the advocates of the Bill have often stressed the importance of having both options. Does the hon. Member for Bradford West agree that it is strange that the Bill does not require palliative care consultation as part of the range of services that are offered to patients when they are having their consultation?
Naz Shah
I completely agree, which is why the amendment tabled by my hon. Friend the Member for York Central (Rachael Maskell) is very important. I urge the Committee to accept it, as it would ensure the provision of a palliative care consultation. As my hon. Friend the Member for Spen Valley has always said, it is about having a holistic approach—we need to get back to that.
In the evidence sessions, we heard that palliative care social workers can play a pivotal role in supporting patients. Those from other professions—psychological services, chaplaincy services, physiotherapists, occupational therapists and speech therapists—along with specialist nurses and medics can all contribute to the care of a patient at the end of life. In discussions with palliative care specialists who listened to the debate on 29 November, they were perplexed by the symptoms that were graphically described in the case studies, and cited poor care as the reason for them. Many such symptoms can be controlled, and they were shocked that such examples of poor care were presented as a reason for assisted death, rather than for making good quality palliative care available to all patients.
We further heard evidence, especially from Dr Jamilla Hussain, that access to palliative care is inequitable. We know that those from minoritised communities and from low socioeconomic backgrounds have poorer access to good palliative care, and that people can have poor access depending on where they live, and on the day of the week or the hour of the day. Through this amendment, we want to ensure that everyone who is seeking an assisted death, or who has it suggested to them, as this Bill allows, is able to access a consultation or consultations with a palliative care specialist, who can dispel the myths while supporting them with their end-of-life plan.
Kim Leadbeater (Spen Valley) (Lab)
My hon. Friend talked about the stories that we heard on Second Reading. Does she acknowledge, as Dr Sarah Cox from the Association for Palliative Medicine said, that there are cases where palliative care cannot meet a patient’s needs? We have a lady in the Public Gallery this morning whose mother had a horrible death, having had ovarian cancer and mouth cancer; she had to have her tongue removed, so she could not eat and drink, and she essentially starved to death. We have to be careful not to dismiss those cases, because they are real stories of real human beings, and we have to acknowledge the limitations of palliative care.
Naz Shah
I absolutely agree. Nobody in this Committee, from what I have heard over the weeks of evidence that we have taken, is suggesting in any way that we are dismissive of people who actually need an assisted death and would benefit from the Bill. As I have said previously, and as Dr Jamilla said very clearly, there are some patients who clinically would benefit from an intervention such as an assisted death. I came on to this Bill Committee to ensure we have the best legislation and safeguards in place. The Bill currently does not ensure that people are aware of the options. This amendment would ensure that people have considered all options and can make an informed choice. If there is no requirement to speak to a specialist, I am afraid the Bill would do a disservice to those who might want to use it to seek an assisted death by not presenting them with those options.
In evidence from the representative of the Royal College of Psychiatrists, we heard an example of somebody who was in lots of pain and decided to seek an assisted death, but changed their mind once they understood that their pain could be alleviated. That is what this amendment is about. I urge the Committee to vote for it, because it is fundamental that we enable people to make an informed choice and to understand the services and options available to them.
Sojan Joseph (Ashford) (Lab)
Does my hon. Friend think that giving everyone access to palliative care would resolve some of the concerns about coercion and consent?
Naz Shah
My hon. Friend comes from a mental health background, and I appreciate his expertise. We have talked a great deal about coercion—we have debated it for hours and hours—and I agree palliative care specialists, who deal with such issues as their day job, can provide that intervention and support the patient by establishing a much stronger relationship with them. I added my name to this amendment because I feel very strongly that palliative care must be a central part of the Bill if it is to provide patients a real choice at end of life. There should not be an assumption, as there is in the Bill as drafted, that assisted death is the predominant option once a person embarks on this pathway.
Let me return to the matter of minoritised voices. Dr Jamilla submitted written evidence, and spoke passionately, about the options available to people from black and minority ethnic communities. She said that they feel very much ignored. As I have said previously, palliative care is not fit for purpose because there is postcode lottery: provision depends on where a person lives, whether they have a hospice nearby, what the hospital options are and so on. There is a fear among ethnic minority communities of being pushed towards assisted death.
Sarah Olney (Richmond Park) (LD)
Does the hon. Lady agree that the purpose of this amendment is to ensure the Bill delivers for the people for whom it is intended, such as the person the hon. Member for Spen Valley spoke about? It would put in place protections for the people for whom there is a choice, and that where those choices exits, they are laid out in full and properly examined before a final decision is made.
Naz Shah
I completely agree. It is imperative that those options—pain options and care options, including with the family—are explored in detail. The last time that I spent time in a hospice was when my brother-in-law was dying of cancer, and I remember that, as a family, we were very much involved in those conversations. Having such expertise empowers not just the patient but the family. Losing somebody who has a life-threatening condition is a difficult time for families and loved ones. When the wraparound model of palliative care, with specialist nurses and doctors, is good, it can be amazing. I have heard plenty of stories about when it is good. Last week, I mentioned a friend of mine who lost her husband last year, and she said that the palliative care nurses and doctors could not do enough. That gives the family confidence to explore the options. In that instance, that person would have benefited from this Bill—she encouraged me to support it.
As Dr Jamilla said, some people would absolutely benefit from the Bill, and they cannot be dismissed, but how do we legislate to cover people who do not have equal access to palliative care or to healthcare? There is discrimination. The covid experience that we went through recently showed the impact of inequalities. Disabled people, people with mental health conditions, elderly people, and people from black and minority ethnic communities, say that they were DNR-ed—subject to “do not resuscitate” orders. There is already a lack of trust in services, so we need to strengthen palliative care.
There is a fear among these communities that they will be pushed towards assisted dying. A consultation with participants from Pakistani, Roma, Nigerian, black Caribbean and Indian backgrounds revealed overwhelming mistrust, which is deeply rooted in the experience of discrimination and the disproportionate impact of covid-19. As one participant put it,
“They are doing this to save money…to kill us off.”
To get confidence among communities back, we need specialists people can rely on. That is what the amendment speaks to, and I hope that the Committee will support it.
Danny Kruger
I rise to briefly speak in support of amendment 281, moved by the hon. Lady and tabled by the hon. Member for York Central (Rachael Maskell).
At the moment that somebody seeks assisted death through a consultation with a doctor, they stand at a fork in the road: they can either proceed towards the assisted death about which they are inquiring, or turn towards other treatment options. On Second Reading, almost every Member on both sides of this debate stated that we need more palliative care, and everybody emphasised the value of providing good palliative care to all who need it. The amendments in this group would simply give force and power to the clear call of the House of Commons for a strong, realistic palliative care option as an alternative to assisted death, and I would be astonished if members of this Committee chose to vote them down. They give clear expression to the will of the House: that palliative care should be offered, and that it should be apparent that a patient has clearly understood their palliative care options.
I implore members of the Committee to consider what they would be communicating if they rejected the amendments. They would be saying that this is not a fork in the road, but a one-way street: there is only one way that someone is likely to go, and that is onwards to an assisted death. If that is the will of the Committee, it should vote the amendment down. If it thinks, as so many people said on Second Reading, that there should be real choice, and that palliative care should be explained and properly available, then I implore the Committee to support the amendment.
Naz Shah
Professor Sleeman’s evidence to me around palliative care says:
“‘Essential’ services are not provided: A good example is that our study of community services that are provided to people with advanced illness found that just 1 in 3 areas consistently provides a 24/7 palliative care telephone advice line—even though this has been a NICE recommendation since 2011…Another example is that the most recent NACEL audit (National audit) found just 60% of hospitals provide a 7 day face to face palliative care service— even though this is also a NICE recommendation, and was a recommendation in the One Chance to Get it Right report (that came out of the Neuberger review—around 2015.)”
I appreciate the hon. Gentleman’s important point, but does he agree that not every GP is able to keep abreast of all the palliative care advances being made, which palliative care consultants would know about?
Dr Shastri-Hurst
I am grateful for the hon. Member’s intervention, which leads on to the point I was going to make. We are getting bogged down in nomenclature about what speciality is involved when this is actually about training. It is about whether the individual having the conversation has the requisite skills to have a meaningful conversation. Clauses 5(3)(a) and 8(6)(a) stipulate that the co-ordinating doctor or independent doctor
“has such training, qualifications and experience as the Secretary of State may specify by regulations”.
That is the key part. This is about ensuring that people having incredibly sensitive, challenging and difficult conversations with patients about choices available to them at the end of life have the requisite skills and knowledge to do so. That may not be applicable to each and every general practitioner, but those having those conversations should have that knowledge.
Dr Shastri-Hurst
I fear that my hon. Friend may be oversimplifying what I was saying. Perhaps I was not clear enough, so I will elucidate. I was certainly not suggesting that the required skills were merely those of being able to have a consultation and a conversation. I was talking about having the skills to have the information that needs to be imparted and the knowledge that underpins that and being able to articulate that within a consultation. It is a much wider picture than just having the communication skills—it is having the knowledge that underpins that. I am saying that that is not necessarily the domain only of someone who works in palliative care. There are a number of specialists who work within this field—it is a multidisciplinary field—and they all bring their expertise. The issue is about ensuring that anybody having these conversations has the knowledge base to conduct them properly.
Dr Shastri-Hurst
I will try to make some progress. I want to move on to the other point I want to address, which is around bogging down the whole process with layer upon layer of bureaucracy. We are talking about a relatively small group of patients who are in the last six months of life and are then battling against the system that is meant to be helping them. If we put in layer upon layer and hurdle upon hurdle, it will become a much more difficult system for people to navigate. That does not mean that it would be a less robust system, but it would be a more difficult system. We are trying to make life easier, not harder, for those patients. This comes back to the central point that Professor Whitty made in his evidence about overcomplicating Bills: we overcomplicate Bills out of good intentions, but rarely make the safeguards more robust—in truth, we make them less safe.
Dr Shastri-Hurst
I will give way because the hon. Lady has been very patient.
Naz Shah
I am grateful to the hon. Gentleman, who is being generous with his time. I want to bring in something that is very real for me at the moment. As a result of a hit and run, I have nerve pain for which I receive steroid treatment. I had treatment a couple of weeks ago and suffer from pain at the moment. My doctor is not a specialist in nerve pain; he has to refer me to a musculoskeletal service and I have been waiting for over a year for surgery.
I mention that because we already have care pathways for specialisms such as nerve pain. My hon. Friend the Member for Spen Valley referred earlier to somebody who had cancer and it was a horrible experience. I would like to have thought that in that instance they would have been offered tube feeding. However, to go back to the point, the GP does not necessarily have the skillset. My GP, and there are lots of them in that practice—it is a brilliant practice at Kensington Street—has to refer me on. That is the point of the Bill. The amendment speaks to developing an established care pathway. If we are to pass this legislation into law, we must ensure that there is a care pathway to explore palliative care.
At the moment clause 4(4), which my hon. Friend the Member for Stroud referred to earlier, says this has to be explored in the wider term. However, what that looks like is not a specialty. For some people with cancer and palliative care needs and six months to live, their trajectories could be—
Dr Shastri-Hurst
I am grateful to the hon. Lady for her intervention. She makes a number of points. First, may I say that I am sorry about her own health issues? I think she hit the nail on the head when she said that the GP may not be able to offer that service. For instance, take shoulder injections. Some GPs can do a shoulder injection with steroids; some will refer to the hospital for it. My father was a GP who could do them, but others would have referred to me when I was an orthopaedic surgeon and I would have done them in clinic.
This will not be right for every single general practitioner; the issue is about having a cohort of general practitioners who have the skill and ability, and about having a flexible system that works for patients. It all circles back to the training point. The individuals who do this have to have the requisite skills. That, of course, will be set down in regulation.
The other point that the hon. Member for Bradford West made is that clause 4(4)(c) says that any clinician having that discussion must be able to explain
“any available palliative, hospice or other care.”
It therefore follows that if the clinician is unable to do that because of a lack of skill or knowledge, they should refer on to somebody who can do it. That is the fundamental principle of having informed consent and discussion with patients. If a clinician cannot provide that information, they ask for somebody who can. That was not uncommon in my practice: if I had something that was outside of my area of knowledge or specialist interest, I would refer it to a colleague. That is how those conversations take place.
The Bill as it stands allows that flexibility for patients without confining them. But it gives them the very welcome option of a palliative care referral; that is entirely open to them—it is not closed off from them. Of course, they will be fed into the palliative care route anyway, following the trigger of their terminal diagnosis. They will be going on the journey, and having further conversations around their end of life care. Those are the points that I wish to make.
Kim Leadbeater
I do worry about the lack of faith in our professionals. We have medical practitioners on the Committee and we have heard stories of the very good practice that happens, so it concerns me that we are so cynical about our system. Ultimately, we have to put faith in our professionals to do their job and to take that patient-centred approach, as I firmly believe they do. Dr Sarah Cox from the Association for Palliative Medicine said in her evidence to the Committee:
“In clinical practice, we make all these decisions in multi-professional teams…shared decisions are much better quality, much more robust and much safer.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q90.]
I absolutely agree with her, and that would continue to be the case.
Kim Leadbeater
But it does not say that at all. It actually says that they have to refer, and that they have to consult with other people. That is part of the process. That is exactly what happens now. Professor Aneez Esmail, who is the emeritus professor of general practice at the University of Manchester and who has been a practising GP for over 30 years, told us in his evidence to the Committee:
“In terms of holistic care, currently when I look after dying people I never do it on my own; I am with district nurses, Macmillan nurses, or on call to a palliative care consultant. There is already a team of people looking after dying people…palliative care…works very well and it works in a multidisciplinary way. I think that this legislation will allow a much more open discussion and proper monitoring. It will improve training, guidance and everything else. People say that it will enhance palliative care, and that is what I think will happen.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 171, Q219.]
Indeed, as was referred to by the hon. Member for Solihull West and Shirley, if we consider the training included in the Bill, which doctors will undergo as part of the introduction of assisted dying, evidence from other jurisdictions shows that these are very detailed conversations where health professionals work together in the same way as they do at the moment in end of life care and decision making. As I have said repeatedly, the training is fundamental. I agree absolutely with Dr Rachel Clarke, who told us:
“If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]
I agree 100% and I have embedded that in the Bill.
Naz Shah
I have a few concerns about what we have just heard in relation to the amendment. One of them is in relation to Dr Cox’s evidence. What Dr Cox actually said was:
“The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions”. ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q91.]
Danny Kruger
To pick up on that point about Dr Cox, I think it is critical that the hon. Member for Spen Valley cited Dr Cox in support of the hon. Lady’s contention that the Bill is adequate. Dr Cox, in her evidence, was saying that there is a problem with the Bill because it does not require the multidisciplinary consultation that we all think needs to happen. Dr Cox was suggesting that the Bill should be amended in order to ensure that the NHS does its job properly, and that multidisciplinary consultations are held. Her evidence was not in support of the Bill as it stands.
Kim Leadbeater
On the point made by the hon. Member for East Wiltshire, the Bill does not replace what already happens, and what Dr Cox was saying was that those conversations are already happening in a multidisciplinary way. We do not take that away.
Naz Shah
One of my concerns is that although the Government position in relation to the Bill, as they have said, is neutrality, the Government, in my opinion, have taken a position without an impact assessment, which might suggest that there is some ambiguity. Would the Minister therefore support redrafting potential amendments to include that? If it did specify a doctor or nurse, would the Government then, in their tidying-up, be prepared to accept that amendment?
Daniel Francis (Bexleyheath and Crayford) (Lab)
Referring back to Dr Cox, she said:
“We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 78, Q101.]
Does my hon. Friend agree that we need an inequality impact assessment to understand the current position and to get that right, in line with the Bill?
Naz Shah
My hon. Friend is absolutely right. Without the impact assessment, how do we know what we are dealing with? That would be a normal way of progressing a Bill and dealing with amendments such as these. It feels as though we have just talked about something when the Government have already had a position on it, or have supported a particular position on an amendment.
To conclude, I will press the amendment to a vote, simply because it is important that we explore every option. We are already specifying what doctors have to do. I maintain again that there are 100,000 people in this country who do not access palliative care as it is. Palliative care is crucial when we are talking about end of life and people who have had a diagnosis of less than six months to live.
We will talk about illness and diagnosis in the next round of amendments, but on this amendment, I do not think that ensuring that somebody has at least explored that option is, as the hon. Member for Solihull West and Shirley repeated at least three or four times, “bogged down”. For me, it is not bogging down when we are talking about providing assisted death. The Bill is the biggest legislation on a conscience vote since 1967 in this House, and I do not care how long it takes. I feel very strongly that if we are to deliver a Bill that my hon. Friend the Member for Spen Valley said has the tightest safeguards in the world, then this debate has to happen. These conversations must happen and be explored not just for us here as parliamentarians, but in order for us to go away and say that we have done the best we can.
Question put, That the amendment be made.
Rebecca Paul
I thank the hon. Lady for raising that point. I think that what has been looked at is the number of unassisted suicides. The hon. Lady makes the good point that obviously we need to look at all the different factors that could be part of that, but I am just making the point that when we look at territories that have introduced assisted dying, we find that at the point at which it is introduced, we generally see, in most territories, an increase in unassisted suicide. I do not think that we should rush to disregard that. We need to recognise that in helping a small group of people at the end of their life, which undoubtedly this Bill will do, there will be a price to be paid. That price will be paid by our young people and other vulnerable groups.
I will not vote in favour of clause 1—I do not think that there will be a Division on it anyway—but I will not oppose it either, for the reasons that my hon. Friend the Member for East Wiltshire set out. I understand that it is the key clause in order for us to progress and continue the debate, which is what Parliament wishes us to do, but I hope that the Committee will be more receptive to improving the safeguards as we progress through the Bill. The amendments really were tabled in good faith. We did our best to write them in a clear way, but obviously the private Member’s Bill process makes that more difficult. This is not a Government Bill, but we are all doing the best we can to table amendments that would improve the safety of the Bill.
Naz Shah
I just have some concluding remarks. None of the amendments was voted for. I feel that in the clause 1 stand part debate, huge opportunities have been missed. I have talked a lot, throughout the debates, about the issues of people from ethnic minority communities. Opportunities were missed to safeguard disabled people and people from ethnic minority backgrounds.
My hon. Friend the Member for Ipswich made a point about amendments being clear, and about ambiguity. The truth is that if the amendments were supported in principle, they could have been tidied up by Government. There are some good amendments that could have been clarified by the Government. In principle, they were good options. I struggle with the whole narrative throughout the debate on clause 1: “Yes, we accept the principle, but we are not going to do it because it is ambiguous or the wording is incorrect.” There is lots of wording that we will debate throughout the rest of the Bill that is not quite clear, and that is the whole point of going through this exercise. Going forward, I encourage us, as the hon. Member for Reigate did before me, to do as we have been doing, with sincerity, in trying to make this Bill the best in the world it can be, as my hon. Friend the Member for Spen Valley intends.
Stephen Kinnock
I will make some brief remarks on the legal and practical effect of clause 1, as amended, to assist hon. Members in making their own assessment. Clause 1 sets out the eligibility criteria that a person must meet in order to request to be provided with lawful assistance to end their own life under the provisions of this Bill. A person must be terminally ill; this term is defined in more detail in clause 2.
Clause 1(1) sets out a further four requirements, which require that a person must also have the necessary capacity to make the decision, which is to be read in accordance with the Mental Capacity Act 2005; be aged 18 or over; be ordinarily resident in England and Wales and have been resident for at least 12 months; and be registered as a patient with a GP practice in England or Wales. This clause provides that, in particular, clauses 5 to 22 of the Bill require steps to be taken to establish that the person has a clear, settled and informed wish to end their own life and has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person in making that decision.
The clause, as amended by the insertion of new subsection (3), will ensure that the service can be accessed only by an individual ordinarily resident in England and Wales. That amendment, amendment 180, has been drafted to give effect to the policy intent of my hon. Friend the Member for Spen Valley for this legislation: that it is to apply only to those in England or Wales and is not to be accessed via medical tourism.
As I have said, the Government remain neutral on the substantive policy questions relevant to how the law in this area would be changed. The clause is a matter for the Committee and Parliament to consider, but the Government’s assessment is that the clause, as amended, is workable, effective and enforceable.
Question put and agreed to.
Clause 1, as amended, ordered to stand part of the Bill.
Clause 2
Terminal illness
Rebecca Paul
I rise to speak to amendment 11, which stands in the name of my hon. Friend the Member for South Northamptonshire. This is one of the areas of the Bill where we all agree on what we are trying to achieve, so it comes down to making sure that the drafting does exactly what we all intend in order to protect people.
The definition of “terminal illness” in the Bill has two components. The first is that the person has an inevitably progressive and irreversible condition; the second is that their prognosis is less than six months. An issue raised in our evidence sessions is that there is a risk that a person with a mental disorder or disability will meet that definition if they are suffering physical symptoms that mean that they satisfy both parts of the test; a possible example could be a young woman suffering with severe malnutrition as a consequence of anorexia. With respect to the point that the hon. Member for Stroud made, I agree that anorexia on its own would not qualify, but the issue arises when there is a physical manifestation from that disorder such as severe malnutrition or even diabetes, which can co-occur, as we heard in the evidence sessions.
It is clear that that is not the intention of the hon. Member for Spen Valley or anyone on the Committee, as evidenced by the inclusion of subsection (3). I thank the hon. Member for making that point; it is much welcomed. However, in oral evidence, Chelsea Roff said that
“we have case law in the UK where people with anorexia are being found to be terminal. We have to take that reality into account.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 153, Q194.]
Before I get into amendment 11, which aims to address the issue, it is important to understand what clause 2(3) is trying to do. It reads as follows:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both”
of a mental disorder or a disability; it refers to the relevant bits of law. As my hon. Friend the Member for East Wiltshire has set out, the words “for the avoidance of doubt” make it clear that this is a clarifying subsection that does not make any change to the rest of clause 2. It appears to be clarifying that mental disorders and disabilities alone will never qualify someone for assisted dying—I think we all concur with that—unless they also have a physical condition that meets the terminal illness test, namely that it is inevitably progressive and irreversible and that the person has a prognosis of less than six months.
This is where the problem lies. If someone has a physical condition arising from their mental illness, such as severe malnutrition resulting from anorexia, and if the physical condition meets the definition of a terminal illness, they will qualify. As the Royal College of Psychiatrists said in its position statement:
“The wording of the Bill could also be interpreted to include those whose sole underlying medical condition is a mental disorder. While anorexia nervosa, for example, does not itself meet the criteria for terminal illness as it is not an ‘inevitably progressive illness, disease or medical condition which cannot be reversed by treatment,’ its physical effects (for example, malnutrition) in severe cases could be deemed by some as a terminal physical illness, even though eating disorders are treatable conditions and recovery is possible even after decades of illness.”
To remedy the issue, amendment 11 would remove the words “For the avoidance of doubt”, to make this a legally effective clause, rather than just a clarifying one. That means that it is providing an additional safeguard to those with mental disorders and/or disabilities. It would also remove the word “only”, to ensure that a physical condition resulting from a mental disorder or a disability will not make a person eligible for assisted dying. The amendment is further bolstered by amendment 283, tabled by the hon. Member for York Central, which would make it clear that comorbidities arising from a mental disorder do not qualify a patient for an assisted death.
I thank the hon. Member for Spen Valley for tabling amendment 181 to try to address the issue, but I do not believe that would quite solve the problem, which is quite a tricky one. “For the avoidance of doubt” would still be there, as would “only”. The sentence beginning with “Nothing in this subsection” makes it crystal clear that if a condition meets the six-month condition and the rest of the definition, it will be considered a terminal illness. There is therefore no exclusion for physical symptoms manifesting from mental illness or disability, which I think is what we are all trying to get to.
In my view, the only amendment that would address the issue is amendment 11, tabled by my hon. Friend the Member for South Northamptonshire. It would remove both “For the avoidance of doubt” and “only”, and would therefore better ensure that a physical condition resulting from mental illness or a disability does not make a person eligible for assisted dying.
Naz Shah
Sorry, I mean amendment 11. Thank you, Mr Efford.
I think it will be helpful to spell out what the Bill currently says, and what it would say if amendment 11 were adopted. I will also set why the amendment would provide a much stronger safeguard than amendment 181, which was tabled by my hon. Friend the Member for Spen Valley.
Clause 2(3) states:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only”
—I stress the word “only”—
“of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
If amendment 11 is agreed to, clause 2(3) will read:
“A person is not to be considered to be terminally ill by reason of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
That may seem a very small change, but it is an extremely important one.
The Bill, as presented to Parliament on Second Reading, would allow someone to qualify for assisted dying if they had a mental health condition such as anorexia nervosa and a physical condition such as malnutrition. To put it with absolute bluntness, that means that somebody with anorexia nervosa could stop eating until they suffered so badly from malnutrition that two doctors prognose that the patient is likely to die within six months. That person, under the Bill, would then qualify for assisted dying.
Kim Leadbeater
This is a really important discussion and I am so glad that we are having it—some brilliant points have been made. As someone who has worked with people with anorexia, I am very aware of the sensitivities of the condition and the issues around it. Would my hon. Friend agree that, as part of this discussion, we have to consider the capacity assessment of people with eating disorders? It is a very serious mental health condition; it would require a lot for somebody with anorexia to pass the capacity threshold for making a decision of this magnitude. It is certainly the sort of instance where I would be very surprised if a doctor did not refer to an eating disorder specialist. Does my hon. Friend agree that we have to look at the condition and how the patient should be cared for holistically?
The Chair
Order. I remind hon. Members that there are a set of amendments in the next group about anorexia. Let us not go too far down this road.
Naz Shah
I absolutely agree with my hon. Friend that there need to be specialists—we will come to that debate later. Let me bring our debate back to the amendment we are discussing. I understand that the Bill is drafted so that people who suffer mental disorders, such as anorexia nervosa, cannot qualify for assisted death—when my hon. Friend the Member for Spen Valley sets that out, I have absolutely no reason to doubt it—but that is not enough to safeguard people with such disorders. As we know, people with anorexia can and have stopped eating until they suffer advanced malnutrition, which is a physical disorder. In some cases, that malnutrition becomes so advanced that doctors will prognose death within six months.
If we wish to protect people with anorexia and other eating disorders, we must rewrite the Bill. We must ensure that people who have those disorders, and who also have a physical disorder, cannot qualify for assisted dying. I must underline that this is not a hypothetical point or some clever objection that has been dreamed up without reference to the real world. It has actually happened—not once, but dozens of times in countries that have assisted dying.
Kim Leadbeater
My hon. Friend is making a powerful point. Does she agree that the reporting and data around assisted dying are fundamental? That is why it is important that, if the law is to change in this country, we get that absolutely right. What we propose in the Bill is closest to the laws in Australia, and in my understanding there have been no assisted deaths of people with anorexia in Australia. However, my hon. Friend makes a valid point about the accuracy of reporting; we do not know whether those examples were people with anorexia who happened to have cancer as well. We just do not know, and that is not good enough.
Naz Shah
I absolutely agree that if the Bill is to get through Parliament, it has to have those mechanisms and safeguards in place, but I am sure we will come to those later. If we do not know with any reasonable degree of accuracy how many cases there have been worldwide, we cannot say where the majority of such cases have occurred. When we are told that there have been zero assisted deaths of people with anorexia in Australia, I would err on the side of caution—another witness said that there were zero deaths involving coercion.
I understand that my hon. Friend’s amendment 181 also attempts to change clause 2, but the change would still allow people to qualify for an assisted death if they had a mental disorder alongside a physical disorder. I have no doubt that this stems from a compassionate desire not to exclude—for example, someone who has mild depression and a major physical illness—but its effect is to create a major risk for people suffering from both a mental health disorder that affects their eating and a physical disorder caused by not eating. To avoid that risk, the Bill must be much more tightly worded than it was when presented to the House on Second Reading, and it must be much more tightly worded than amendment 181 would make it.
We must make it much harder in the Bill for people to qualify for assisted death by way of having malnutrition caused by an eating disorder. It is a complex problem, and I believe no one amendment will solve it completely. I have submitted two amendments with the aim of making a contribution. Amendment 11 would also make a significant contribution to solving the problem, and I urge all Members to support it.
I turn to amendment 181, tabled by my hon. Friend the Member for Spen Valley. Although the Acts mentioned in clause 2 define mental illness and disability as being taken from the clear medical model, it is not clear if she is further suggesting that a new definition should be used—for instance, the social model. Someone could have a significant impairment under a social model of disability, and for the purposes of the Bill, not consider themselves to be a disabled person. Therefore, they could qualify for an assisted death, thus rendering the provision of no worth.
It is therefore unclear what my hon. Friend is similarly proposing with regard to mental illness. Amendment 11 is needed to provide assurance that if someone does have a mental illness, then it is tightly defined and would preclude them from being able to access an assisted suicide, in case the reason they are seeking it is the mental illness and not the terminal diagnosis. I will speak further on that later.
If amendment 181 was agreed to, the clause would read that a person is not to be considered terminally ill
“only because they are a person with a disability”.
There are two obvious problems with the amendment. First, the amendment removes references to the Equality Act 2010 and the Mental Health Act, which previously defined who did and did not have a disability or a mental health disorder, but having removed those definitions, it does not then define disability or mental disorder in the Bill. What definition will medical practitioners, and indeed applicants, use to determine who does or does not have a disability or mental disorder?
Kim Leadbeater
In terms of the removal of references to the Equality Act, I was not aware when the Bill was initially drafted that cancer is actually classed as a disability. Given the fact that in some countries 70% of assisted deaths are for cancer patients, it would seem ridiculous to exclude cancer patients from having the option of assisted death. I hope that goes some way towards explaining that point.
Kim Leadbeater
The concepts of a mental disorder and a disability are well understood, and those terms are well used. In the eyes of the law, we would not need to provide a definition of those in the Bill, but the removal of the reference that would include people with cancer is an important thing to do.
Danny Kruger
The fact that cancer is included in the Equality Act definition does expose a concern about the Bill. It suggests that there is a real connection there, which is of concern. I think the solution is to accept the amendment 11 and ensure that disabled people and those with mental health conditions would not be eligible for assisted dying, and then to introduce a further amendment—either now, as a manuscript amendment, or later—to exclude cancer from the definition. That is a tidying-up exercise that could be done in light of the point that the hon. Member for Spen Valley made about the reference in the Equality Act. The most important thing is that we tighten the clause to protect disabled people.
Terminally Ill Adults (End of Life) Bill (Tenth sitting)
Naz Shah ExcerptsWednesday 12th February 2025
(3 weeks, 6 days ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 12 February 2025 - (12 Feb 2025)
Rebecca Paul
Just to clarify, I am not questioning that they were not telling their truth. I completely believe that, from their perspective, they honestly believe they have never seen a case of coercion. Maybe I am more of a glass-half-empty kind of girl than some other people, but I question whether that is really the case. In my 45 years on this planet, I have learned enough about humankind to know that these things do happen, but different people will take different views when it comes to detecting them.
Naz Shah (Bradford West) (Lab)
The hon. Lady has made some important points. I repeat something I said yesterday in response to another Member: the word “coercion” and the idea of encouragement were not even in the vocabulary in this place until very recently—only 10 years ago. I do not want to dismiss people’s expertise, but for me it is quite a leap of faith—I wonder whether she shares that idea—to believe that in that jurisdiction, zero people were coerced, when every other jurisdiction records people being coerced and people saying they feel a burden.
Rebecca Paul
My hon. Friend is very knowledgeable about these things and is well qualified on the legal side. I value his contributions on this matter. The reason I want to include “unduly influence” is because it deals with those more subtle forms of coercion. Arguably, it could be included in “coerced or pressured”, but by including “unduly influence” in the Bill it becomes more explicit that a clinician has to be looking for it. In the absence of the language, clinicians will not be required to look for those more subtle forms of influence.
The provision is something that is included in the assisted dying laws of other jurisdictions. We have the opportunity here to learn and benefit from jurisdictions that have already implemented it. We heard various witnesses give us very useful evidence during the sessions. For example, California includes “undue influence” in the law. We should recognise that there is value in including it here. It is a well-established legal term that is used in myriad situations, so it is relevant that we include it.
Naz Shah
May I take the hon. Member back to the point of clause 24, and the issue of suicide and the terminology there? Perhaps the Minister could respond as well, although I am not sure how that would work in this Committee. What I think we are doing in clause 24 is to decriminalise encouraging suicide. That is my understanding. So can we have some clarity? Are we trying to decriminalise encouraging suicide? That is what clause 24 says, so in that case it would be absolutely right to talk about the word “encouragement”.
Rebecca Paul
It is helpful to understand the Government’s position. If the amendment is not made, I hope that the Minister is right, but one thing that I have learned in my time is that different judges will have different views on these things. Personally, I would prefer to see this provision in the Bill, as it would absolutely ensure that the protection is in place. We all know that decisions in the courts can sometimes go a different way from what we expect.
Naz Shah
I have a concern about what the Minister says. As one psychiatrist put it, the Bill is very novel and untested. The MCA has not been tested. Now the Government say that this will work, without consultation or any impact assessment. I struggle to understand that. Does the hon. Lady share my concern that this does not feel right?
Rebecca Paul
It is reassuring to hear that I am not the only one worried about this, so I thank the hon. Lady for that.
Naz Shah
Does the hon. Lady share my concern? My understanding is that, in normal parliamentary business, if the Government announce any changes to the law in the press first, they are usually rebuked by Mr Speaker in the Chamber. I appreciate that this is a private Member’s Bill, but a Guardian piece yesterday outlined how we will now scrap the involvement of a High Court judge and have a panel instead, with an amendment to be tabled to that effect. I am happy for my hon. Friend the Member for Spen Valley to clarify how the system is going to change.
Once we have debated the amendments on undue influence and coercion, we have debated them. We cannot then come back to them, because of the nature of private Members’ Bills. Does the hon. Lady share my concern that, as we said yesterday, the horse has bolted? We are having to go over things and we might not be able to revisit this issue, which is why it is even more important to have probing conversations on the record so that, if nothing else, we can refer to them on Third Reading, for which we have only five hours.
Rebecca Paul
I completely agree with the hon. Lady. We should not make the mistake of assuming that certain amendments will be accepted. Until there is a Division, we do not know what the Bill is going to look like. It is incredibly difficult to table amendments early on when we do not know whether other fundamental things are going to change. That is why it is important that we are really thorough and improve the safeguards as much as we can, clause by clause. I do not want to get to the end of this process without our having accepted any of the improved safeguards, only for the Bill to be turned on its head at the end when there is a Division on something fundamental. As the hon. Lady rightly says, we do not get the opportunity to come back and review the decisions we have made on the back of that.
Rebecca Paul
I thank the right hon. Lady for that really helpful intervention. That is exactly the kind of advice that is extremely useful to us new MPs undertaking this process. I will have to make the decision on that question in a matter of minutes, and it is very difficult, but I will do my best to make the right decision.
New clause 5 seeks to define encouragement for the purposes of the Bill and includes some exclusions. We have already talked about some of the challenges with exactly what encouragement means, and clearly there are certain acts that we do not want to be captured by it. The aim of the clause is just to ensure that it is only intentional, targeted and effective encouragement that is covered. I am very open to working with the Government to ensure that the drafting reflects the intent; it may well be that some other things go in there to address some of the concerns raised by my right hon. Friend the Member for North West Hampshire around support being given by families. No one wants to see that included in this definition—I think we all agree on that.
In summary, I hope hon. Members will view these amendments, incorporating undue influence and encouragement into clause 1, favourably, in order to bolster the safeguards in this Bill. It is vital that subtler forms of influence are addressed, to protect patients and to ensure that it is not just the obvious signs of coercion that are looked for. I also welcome amendment 113, tabled by the hon. Member for Broxtowe, which is very much in the same spirit as amendments 23 and 82 and would insert the word “manipulated”. I hope we will debate it because, if accepted, it would certainly improve the safeguards in the Bill.
Naz Shah
It is a pleasure to follow the hon. Lady. Just to put it out there, to begin with on amendment 23, the Court of Appeal, in the case of “Re T (Adult: Refusal of Medical Treatment)”, held that undue influence was relevant to medical decisions and said that doctors must check for it. Undue influence is about power imbalance, rather than outright coercion.
That brings me nicely on to the points we discussed in some detail yesterday. The right hon. Member for North West Hampshire talked about having a conversation with his family, with his wife and children and so on. I will give another example. Say there is a woman who has been the victim of domestic violence—we know this happens; we know two women a week are killed in this country, to this day—and she is subtly encouraged: “Sweetheart, you’ve got a diagnosis and the option is to have this.” There is a fine line, and the fine line conversation has been mentioned quite often as well, but I would rather stay on the side of caution with that fine line conversation when it comes to domestic abuse, coercion and the power imbalance in a relationship.
Let me come back to that woman or elderly person whose loved ones have the conversation—and they indeed have the conversation; it happens every day. Ask any victim of domestic violence. On average, it takes a woman 40 attempts to leave an abusive partner—that is the fact—because we do not even recognise it.
I know somebody who recently left an abusive partner—that took three years of encouragement because she did not recognise that what was happening to her was about power and control. It is when power is juxtaposed with vulnerability that there is the potential for abuse. That happens—it happens every single day. Victims of domestic abuse are not just younger people; according to Age Concern, over 375,000 older people are at risk of domestic abuse.
The abuse of people is a cancer in our society, and that very subtle power imbalance is where the fine line is crossed. Given that the Court of Appeal has ruled and is already saying that medics have to look out for undue influence, I would argue that amendment 23 actually strengthens the Bill. My hon. Friend the Member for Spen Valley has repeatedly insisted that this Bill needs to be the tightest in the world. How does the amendment not complement her view? How does it not strengthen the Bill, to protect victims?
Sojan Joseph (Ashford) (Lab)
My hon. Friend mentioned domestic violence and vulnerable people. Do we not also need to think about the many people in hospital beds and nursing homes who may not have any relatives? They might get influenced or encouraged to choose this route by professionals because of the pressure on the NHS and hospices. Amendment 23 would strengthen the Bill in that respect as well.
Naz Shah
I would like to hope that that would never happen; I have a huge love of the NHS and of the people I know in it who make decisions every day, particularly given all the cuts—even more so, post covid. But there is that risk; I would like to hope that it is very small.
When it comes to mental health, the debate is similar to the one about capacity: it is the same conversation about whether something is fit for purpose. Just because something already exists does not mean that it will necessarily suit what we are doing here.
On International Women’s Day, the Minister for Safeguarding and Violence against Women and Girls, my hon. Friend the Member for Birmingham Yardley (Jess Phillips), eloquently reads out a list of victims of domestic violence who have been murdered. There are two a week—I make no apologies for keeping coming back to this. Only yesterday, there was an article about women’s charities that support victims of domestic abuse citing their concerns. The amendment speaks to those concerns. How could it not be supportive?
I am not convinced by the idea that the amendment would introduce an element of jeopardy. People make decisions with their families every day. We sit and have conversations. I speak from a position of privilege—as we all do in this place, frankly. We speak from positions of privilege about how we could have these conversations with our families. But we know that inequalities exist and that some people do not have those privileges. We know that society is unequal. We know that domestic abuse, elder abuse and mental health issues exist.
In my constituency, it takes 14 months just to get a child and adolescent mental health services referral for a young person; I appreciate that we are not talking about young people. My point is that there is a real backlog in the NHS—in terms of waiting times and pain medication, for example. Palliative care is not equal, as I said yesterday. I am genuinely asking Committee members: which bit of the amendment can we not support?
Sarah Olney
The hon. Lady is making a powerful speech. She referred to an article she read yesterday about domestic violence in relation to the Bill; it may have been the article by Sarah Ditum in the New Statesman, which I also read yesterday. It cited two cases in which people had been on trial for murder and had pleaded mercy killing, or said that they had carried out the killing of their spouse or partner on the basis that that person was suffering greatly at the end of their life. In both cases, when the evidence was examined, the men were found guilty of murder, because it was very clear that that was what had actually happened.
The article had a profound impact on me, because it demonstrated the risk that we are running: that people will be able to use the Bill in instances of domestic violence. We have to take that very seriously and consider the implications.
Kim Leadbeater
My hon. Friend is making some powerful and important points about, sadly, a lot of the ills in society, which we all deal with.
Let us take the example of a woman who has a terminal illness and is coerced and pressured by a loved one to end her own life. At the moment, we have no idea whether that has happened, because there is no legal framework around that dreadful situation. The Bill would create a legal framework, so that conversations would be had with that woman prior to that point and, hopefully, that point would never come. She would speak to two doctors, potentially a psychiatrist, and other experts to ensure that that did not happen. At the moment, there is no legal framework around that. The Bill also includes a criminal offence of coercion, for which someone could go to prison for 14 years. At the moment, that just is not there.
Naz Shah
I thank my hon. Friend, but I feel that the point is being missed. It is true that there is no framework, but for somebody to get to this point in the first instance they need to have a terminal illness. There is a framework around domestic violence, and domestic violence laws exist for everybody. Frameworks already exist for women fleeing domestic violence, and there is no shortage of attempts to try to get those legal frameworks right across society. That is why we had the Domestic Abuse Act 2021, why we have committed to halving violence against women and girls, and why the Prime Minister made a personal commitment in that regard—and rightly so.
There has already been a test case in which a judge said that medics have an obligation in this context. An hon. Member referred yesterday to assisted dying being a treatment, although I disagree, and we had that conversation later.
The Minister for Care (Stephen Kinnock)
That was a misunderstanding; I was talking about “treatment” as a legal term.
Daniel Francis
From what I understand from the promoter of the Bill, the argument is that we should put these measures in place to protect from coercion people who have less than six months to live, but we would not put those protections in place for people who have nine or 12 months to live. If we are putting the measures in place for someone with six months to live, why are we not doing so for someone with nine or 12 months to live?
Naz Shah
My hon. Friend makes a valid point. There has already been a test case, and the Court of Appeal has ruled that undue influence is relevant to medical decisions and that doctors must look at it. If that is already a ruling, I struggle to understand the resistance to adding the words “undue influence” to a Bill that, in the promoter’s own words, should be the safest in the world. A judge has already ruled on it. We already know that we are not going to get to a judge. I struggle to understand this.
Kit Malthouse
As the Minister pointed out, the concepts that the hon. Lady is trying to embed in the Bill are already covered by what is a settled legal interpretation and a framework that, over the last 10 years, has become used to dealing with those issues. Do not forget that families who are going through such situations will be advised and will examine the legislation quite carefully. I am nervous about injecting yet another level of consideration for them that might mean that conversations are interpreted—by them, but not necessarily in a legal sense—in a way that is not beneficial to the patient.
I understand the group that the hon. Lady is seeking to protect—that is what we are all trying to do. But what about the majority of people in such circumstances, who might say, for example, “Darling, I am thinking about taking an assisted death because of my horrible disease. If you were me, what would you do?” If I then say, “Well, painful though it is for me, I would do exactly the same thing,” how would families interpret that?
I also want to respond to the hon. Member for Bexleyheath and Crayford. He made a strong point, but I am not sure he is exactly right. I think that if at nine months I have a disease that is progressing, and somebody in my family says to me, “When it comes to it, Kit, you have absolutely got to take an assisted death. We really want you to,” and then when I get into the six-month period I do, and I tell the doctor, my interpretation is that would be covered under the Bill.
I think what the Minister was eloquently trying to establish was that we have to be careful about the clarity of the legal language, and not make it embroidered in a way that makes interpretation by laypeople as well as by lawyers more difficult and complicated. I will come on to this in the next grouping, but we must not use language in a way that skews behaviour, or that makes what should be healthy and fulsome discussions within families guarded and nervous.
Naz Shah
I 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.”
Sean Woodcock
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?
Naz Shah
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.
Jake Richards (Rother Valley) (Lab)
This debate has been very interesting and has reminded me of my life before being elected. When I was a barrister in court, I was often junior counsel and, by the time I stood up, all the best points had been taken. I feel a bit like that this morning.
I have some observations, the first of which is on what is in the Bill currently. My central submission is that the Bill does more than enough in this area, and that simplicity is what is required, especially when dealing with very complex and difficult subjects, which coercion is. There are two sides to the coin of coercion: one is about acts by third parties, such as family members or society at large, and the other is the individual making the decision.
Clause 1 is clear that, as part of the assessment made by the doctor, judge or panel, the person must have
“a clear, settled and informed wish to end their own life”
voluntarily. That precisely echoes words from the Crown Prosecution Service guidance on whether to prosecute that is currently in operation. That guidance has been in use for some time, and it seems perfectly rational and logical to continue that.
The focus of the assessment should be on the individual and whether they make the choice freely. Clause 1 makes that clear, and I presume purposefully echoes the language from the CPS guidance. It then says it must be established that the person has
“made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person into making it.”
That must of course be read with clause 26, which introduces a new offence:
“A person who, by dishonesty, coercion or pressure, induces another person to make a first or second declaration, or not to cancel such a declaration, commits an offence.”
That carries a sentence of up to 14 years in prison.
Jake Richards
I am very happy to share my CV afterwards. I practised as a barrister mainly in family law and Court of Protection law, but back in the day I also practised criminal law as a very junior barrister in the magistrates courts up and down the land.
I do not want to delve into the criminal element too much, because we are on clause 1, but it appears to me that the criminal offence set out in clause 26 is far stronger than the Suicide Act 1961, which talks of an act of encouragement. That is not included in clause 26, which talks about inducement—a much more holistic and wider concept than that of an Act probably drafted back in the late 1950s. In my submission, that brings the law far more up to date with modern concepts of coercion and pressure.
Jake Richards
I did not draft the legislation, but my understanding is that the reason why the word “dishonesty” appears in clause 26—I do not know whether the Minister wants to comment on this—is that when there is a criminal offence, there needs to be a mens rea. The person who has committed the offence needs to have been intentional or reckless in doing so. As I say, I was a criminal barrister only very briefly; I am sure my law tutors are shaking their heads.
Naz Shah
The principle of statutory interpretation means that by mentioning one thing, we exclude others, so it is my understanding that having the terms coercion and pressure in the Bill excludes undue influence. Will my hon. Friend, who has clearly gone through this in detail, also comment on the fact that section 2A of the Suicide Act says that encouragement includes pressure?
Jake Richards
With respect, I think my hon. Friend is wrong: it is certainly not an exhaustive list of factors to be taken into account. The courts—this is why we have a common law system—interpret the language used in legislation.
Naz Shah
To build on that, I referred to the Court of the Appeal earlier, but when it comes to someone giving their organs, I think from the age of 12 or 13—I will try to find the reference—the words “undue influence” are used in the legislation. It comes back to the crux of my argument; I would like to understand why my hon. Friend is so concerned, from a legal perspective, about putting in the words “undue influence”, when they already appear in legislation.
Jake Richards
The issue I have is that if we open the door to all different types of terminology, it will never end. The law is best served when it is clear, simple and straightforward.
Naz Shah
In response to the intervention of my hon. Friend, we are here to make the Bill as safe as possible, but this is a new thing. When the Bill returns to the House, I have to make a decision on whether to support a new Bill that is of such huge magnitude to our communities and the whole country. This Committee is the only process available to us, and words matter.
I support the amendment tabled by my hon. Friend the Member for Broxtowe. The concept of manipulation, as she set out, is very important. I come back to the issue of abuse, particularly in respect of women. I have never heard the phrase “Fifty Shades of Manipulation”—that is an interesting one—but this happens every day, across society. I encourage people to talk about these words. We, as parliamentarians, benefit from that: we are better people for understanding other experiences, because different people bring different experiences to this conversation. I have certainly learned a lot, and it strengthens the House itself when we speak from positions that we have debated. That is the whole purpose of us being here. I am not concerned by talking about adding language—I hope my hon. Friend the Member for Broxtowe shares my view—because that is point of us being here in the first place.
Juliet Campbell
To reply to my hon. Friend the Member for Stroud, I understand that the writers, promoter and sponsors of the Bill want it to be as simple as possible. The thought is that if we make it as simple as possible, there is less room for confusion and misinterpretation, but there are times when we can make things so simple that we allow far too much interpretation. Words such as those that the hon. Member for Reigate wants to be put into the Bill are really important. Manipulation is really important. Coercion and pressure are not measures of every type of controlling behaviour that happens to individuals.
Juliet Campbell
I thank my hon. Friend for looking that up so swiftly. I still think that those additional words need to be included in the Bill. “Coercion” and “pressure” are used as a catch-all for manipulation, but the Bill does not allow people who are using it in their everyday life—doctors, clinicians, nurses and social workers—to understand that.
Naz Shah
I thank my hon. Friend for being so generous with her time. To come back to the CPS’s terminology, does she agree that, in an ideal situation, the Bill would be so safe that we would not need to look at that CPS definition? The Bill would be so tightly defined that nobody could be prosecuted for coercing somebody into taking the option of assisted death.
Juliet Campbell
I absolutely agree that we do not want people not to understand what the Bill allows them to do or not do. We spoke earlier about making the Bill simple enough for professionals to understand so that they know how to deal with particular instances, but it is not here to make life easy for professionals; it is here to ensure that anyone who is vulnerable—anyone who has six months to live, or for whatever other reason—is protected.
A continuous theme of our debates and all our conversations is that we must make safeguarding as tight as possible so that people are protected. I believe it is not too much to ask to include those additional words to ensure that the wording is as tight as possible and protects the people who need our protection every single day.
Danny Kruger
The risk of gaming—of patients playing the game, and doctors seeking out words to say or not say—is an issue throughout the Bill. That is a general problem with the Bill; thankfully, it is not just a free-for-all. However, in the scenario that my right hon. Friend suggests, that is exactly my concern: if the patient says that their spouse agrees with them or encourages them, that should be a red flag. Under the current Bill, it is not clear that it would be. There is no obligation on the doctor to record that there has been undue influence or to push back, because at the moment, the doctor is looking only for evidence of coercion. As I will come to later, that bar is too low to use, so if the doctor hears those words, I would like him or her to start asking questions, to push back, and to satisfy himself or herself that there has been no overt encouragement or undue influence. That is the point of what we are trying to do.
Naz Shah
To come back to an earlier point—I want to make these points, simply because it is really important that we get them on the record—my hon. Friend the Member for Rother Valley talked about undue influence and encouragement perhaps being archaic terminology. However, just last year, the Digital Markets, Competition and Consumers Act 2024 cited undue influence, as did the Anatomy Act 1984. Acts passed by Parliament in the last few years have used that terminology, so does the hon. Member for East Wiltshire share my concern about the resistance to having those words added to this Bill?
Danny Kruger
The hon. Member is absolutely right—undue influence does exist in law, including in laws that have been passed very recently. I recognise that the hon. Member for Rother Valley is not impressed by laws that are more than 10 years old, but I hope he might be satisfied that a law passed last year is sufficiently up to date and modern for him to regard as morally valid. Undue influence is an existing term, and we should apply it in this case.
Danny Kruger
I am sure that the hon. Lady will acknowledge that those investigations will still happen, because not everybody who commits suicide will be subject to the Bill; not everybody who is terminally ill and wants to take their life with the assistance of their loved ones will be caught under it. I am sure she acknowledges that it is therefore still appropriate to have safeguards against assisted suicide outside the law—in fact, the Bill strengthens those safeguards. Those will still continue. I also regard it as appropriate and necessary to have a law against assisted suicide, for all the reasons that we have been discussing.
The hon. Lady is right that it is appropriate for Parliament or the authorities in general to ensure that cases such as those we have discussed, and that have been powerfully testified to us, are handled sensitively. In an overwhelming number of cases, the police do handle them well and sensitively. It might be that we need to improve the guidance around prosecution, and that is an important question. I certainly do not want the families of people who have taken their own lives to be harassed and chased through the courts, and I think we would all agree on that. In that respect, the guidance for the CPS and the police will always evolve.
Naz Shah
The hon. Member may recall that we heard from the former head of the CPS in the oral evidence sessions, and I asked him whether the Bill would address concerns about such prosecutions. I absolutely agree with my hon. Friend the Member for Spen Valley that we want to address that. However, this Bill is not the route to address those issues unless they fall into that six-month bracket.
Danny Kruger
I think that is right. I do not accept the claim that this Bill is somehow a response to the problem of abuse, coercion or the pressure to end life in families. Tragically, in jurisdictions that have an assisted dying law, the number of unassisted suicides—suicides that happen outside of the law—go up, because no law can catch all the people who might want to take their own lives. Thankfully, there is no blanket support for any assisted suicide; all the jurisdictions have some restrictions.
More significantly, if the state said that some people’s lives are not worth living and that it is an acceptable choice for them to end their own life—which is not what the current law says; we have legalised suicide, not actually endorsed it—by passing a law that endorsed the choice of some people to take their own life, we would be sending a signal that we agree that some people’s lives are not worth living. The social consequence of that is clear in the evidence from other jurisdictions: suicide in the general population goes up as a result of an assisted dying law.
Terminally Ill Adults (End of Life) Bill (Ninth sitting)
Naz Shah Excerpts(1 month ago)
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The Chair
It might be helpful for the Committee to know that I was bequeathed a list by Ms McVey. I understand that those wishing to speak are the hon. Member for Bradford West, the Minister, and the promoter of the Bill, the hon. Member for Spen Valley. I shall then call the hon. Member for Richmond Park, who tabled the amendment, to wind up the debate.
If anybody else wishes to speak, please indicate in the normal fashion by rising. I will call the hon. Member for Broxtowe if she wishes to speak, but I need to know whether she wants to. If she stands up at the right time, that will be fine. Please be aware that once I have called the mover of the amendment to wind up, there will be no further debate on the subject. That really will be the end of the debate.
Naz Shah (Bradford West) (Lab)
I rise to speak in support of the amendment tabled by the hon. Member for Richmond Park.
The key word here is “capacity”. There has been much debate around the Mental Capacity Act. I will go back to the oral evidence we heard, as well as the written evidence and submissions in relation to the amendments and the clause. The psychiatrists who have advised are against it. I appreciate and recognise the contributions from my hon. Friends the Members for Penistone and Stocksbridge and for Bexleyheath and Crayford, who spoke eloquently about the word “ability” from his experience. I recognise that we have not had the opportunity to test the concept of ability.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
I appreciate my hon. Friend bringing up that point. It is important to note that all Commonwealth jurisdictions that have assisted dying use the concept of mental capacity. We are basing the utility of the Mental Capacity Act not only on 20 years of the courts and medics dealing with it, but on the learning of other jurisdictions that have put assisted dying in place. The concept of ability, however, has no basis in law.
Naz Shah
I absolutely concur that we are testing in regard to other jurisdictions. In Oregon, there is not just the assessment of capacity but a referral to a counsellor.
We have had lots of evidence when it comes to capacity, and I will go back to some of the key points. The Royal College of Psychiatrists stated explicitly that the Mental Capacity Act is
“not sufficient for the purposes of this Bill.”
Explaining why, the Royal College of Psychiatrists said that assessing the capacity to end one’s life is “entirely different” from assessing for the capacity to decide treatment.
Three psychiatrists who gave evidence to the Committee —Professor Allan House, Dr Annabel Price and Professor Gareth Owen—all expressed doubts about the use of the Mental Capacity Act to assess whether a person was in a fit state of mind to undertake assisted dying. When Professor Allan House was asked why some people might choose assisted dying, he said they are vulnerable. When asked what he meant by that, he said:
“They are not people asserting autonomy and pleasure in their ability to make a choice; they are people describing to you things that are negative influences on their life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 161, Q202.]
Professor Gareth Owen said:
“I have looked at mental capacity a lot in research, and there is no experience of the decision to end one’s own life. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground. The reference to the Mental Capacity Act in clause 3 puts you into an area where there is no experience of the central capacity question under consideration. It is very important that Parliament be clear-eyed about that.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q287.]
Dr Tidball
On the hon. Lady’s point about being clear-eyed, it is important that we look closely at the drafting of the Bill and the utility of the Mental Capacity Act. There are eight occasions on which a person who might seek assistance can formally consider their decision making, and the Mental Capacity Act would come into play at each of those stages. A person with a terminal illness who wishes to seek assistance does not make a one-off decision; they make the decision eight times during the process, so we have a wide variety of opportunities to ensure that their consent is ongoing.
Rebecca Paul (Reigate) (Con)
A very good point has been made about looking at the Mental Capacity Act at different times during the process. However, it does not matter how many times a bad process is applied; if the process is insufficient and does not have a high enough safeguard, it will never give the right answer. We need to ensure that we have the right test. It is absolutely right that we apply it multiple times, but does the hon. Lady agree that we need to consider the quality of what we are applying in the first place?
Naz Shah
I 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.
Sean Woodcock (Banbury) (Lab)
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?
Naz Shah
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.]
Tom Gordon (Harrogate and Knaresborough) (LD)
I completely agree with the point the hon. Lady is making about mental capacity applying to eating disorders, but would that not be better debated in relation to defining an eating disorder as a terminal illness, rather than in regard to mental capacity?
Naz Shah
I will be speaking to the issue in relation to terminal illness, because it relates to my amendment in another grouping. The reason I am making this point now is that it also impacts on capacity. When we are assessing capacity—again, this talks to the point—the truth is that nobody in this Bill Committee or otherwise can tell me that the Mental Capacity Act has been applied to the question, “Would you like assisted dying?”
Dr Simon Opher (Stroud) (Lab)
First, it is impossible to argue that, because we have never been able to have assisted dying in this country, so it is a spurious argument. However, I do not quite understand the argument here. You are suggesting—
Dr Opher
I am sorry. My hon. Friend is suggesting that a system that has been tried and tested in court and by clinicians throughout the country over the last 20 years is not preferrable to a new system that is completely untried. I thought this Committee was about making these things safe for patients, and I cannot see how the amendment makes them more safe.
Naz Shah
My hon. Friend speaks to my point and the idea that the Act has been tried and tested. When we are talking about coercion, and capacity in relation to coercion, I come back to the point that we in this House have only just, in 2015 and 2021, made legislation using the word “coercion”. It was not recognised before. On the idea that this has been tried and tested for the last 20 years, I simply beg to differ.
Coercion does come into the issue of capacity. We are looking at the Mental Capacity Act, which was introduced in 2005 and is 20 years old. These conversations were not being had in Parliament at that time; the vocabulary did not include “coercion” or “undue influence”, even at the time the Mental Capacity Act was passed by this House. Again, that speaks to my point: are we really saying that we want to test the Mental Capacity Act on something that has never been done before?
Jake Richards (Rother Valley) (Lab)
I am trying to understand my hon. Friend’s argument. In terms of a person choosing to ask their doctor to turn off their life support machine, as opposed to someone offering a person drugs to self-administer, I understand that there are differences in terms of public policy and that, for some, there are differences morally. However, in terms of capacity—the decision as to whether that person can make that choice themselves—why is it different?
Naz Shah
The hon. Member for East Wiltshire answered that question eloquently earlier. Although the outcome is the same, we are asking two different questions. The question is not about turning off and unplugging a machine; it is about whether someone will take drugs to end their life.
Jack Abbott (Ipswich) (Lab/Co-op)
To follow the basic premise of your argument—
Jack Abbott
It is not your argument, Sir Roger; it is my hon. Friend’s argument. I apologise.
To follow the basic premise of my hon. Friend’s argument, she is saying that the Mental Capacity Act is not tried and tested for what we are discussing. However, by definition, neither is this amendment; if anything, it is even worse, because words such as “ability”, which we are discussing here, have absolutely no basis, as was admitted by the hon. Member for East Wiltshire. On that basic premise, my hon. Friend will not agree with any amendment that is tabled today, because none of them is tried and tested. Is that correct?
Naz Shah
My hon. Friend is not wrong, in so far as there can be two truths. There is a truth, for me, that the Mental Capacity Act does not deliver what we need it to deliver, and that is the concern we have heard from people who have given us evidence. We have not talked about the word “ability”—as hon. Members have pointed out, it is not set out in law—so there is a conversation to be had.
As my hon. Friend the Member for Spen Valley, the promoter of the Bill, clearly stated, this is about strengthening the Bill and bringing the best Bill to Parliament to give people a choice. That is what this is about.
Danny Kruger
The hon. Member is making such an important speech, and I am very grateful to her. This is a crucial discussion. The hon. Member for Ipswich suggested that the amendment would make things worse because it would apply a new test.
Danny Kruger
I will conclude my intervention very quickly. I fear that I may have mischaracterised the hon. Member for Bradford West when I said that she is opposed to the Bill in principle; in fact, I do not think that is the case. I am not sure what the difference is between opposition in principle and opposition to the detail, but I recognise that she is certainly not opposed to the Bill in principle, so I apologise to her.
Does the hon. Lady agree that the Bill would take a great leap in the dark by legalising assisted dying? At the moment, that leap lands on the uneven ground of the Mental Capacity Act. Does she agree that, if we want to do this properly, we should prepare a solid, cushioned, safe landing space that is appropriate for the Bill, rather than the inappropriate mess that the Mental Capacity Act would induce?
Naz Shah
I am grateful to the hon. Gentleman for his correction. To clarify, I do not think anybody in this House disagrees in principle with the idea of not letting people suffer. I am very much about principle, and I came to this Committee very much in that spirit. When I was asked to join this Committee, I had to sleep on it, and I now realise why.
I am grateful for the interventions from my hon. Friends the Members for Rother Valley and for Ipswich. There are a couple of things that are important for us to understand. The Mental Capacity Act has not been tried in any of the other jurisdictions across the world on which we are basing this law, so we cannot make a comparison.
On the issue of whether it is either/or—whether it is the Mental Capacity Act or the word “ability”—the Secretary of State has the power to change that. If we are to be true to the spirit in which we have come to this debate to make the Bill as safe as possible, given that so many psychiatrists and experts have said that they are not convinced that the Mental Capacity Act is fit for purpose in this regard, surely it is incumbent on us to make that case.
Jack Abbott
My hon. Friend said that the Mental Capacity Act is not tried and tested, and I was challenging the premise that we should apply a concept that is not tried and tested in this or any other country. She is saying, “I can’t support the Mental Capacity Act in its current form because it is not tried and tested,” but, following that argument, she would presumably not support this amendment or any others because what they propose is also not tried and tested.
Naz Shah
This amendment is an attempt to have that conversation and to strengthen the concepts that we are debating. That is the whole point of the Committee. As my hon. Friend the Member for Spen Valley said, there is no point in having witnesses if we do not listen to what they say. This is what the witnesses said.
My hon. Friend the Member for Ipswich makes a valid point. He asks whether I would, by that definition, support this amendment. I support it because it has led to a debate that we have had all morning, and that we are carrying on into the afternoon. As it is, the Bill does not give me confidence, whether it is due to the use of the Mental Capacity Act or the definition of “ability”. I feel that it needs to go much further, perhaps through the Secretary of State tabling another amendment at a later point.
Sojan Joseph (Ashford) (Lab)
We heard many pieces of oral evidence from expert psychiatrists, including from the Royal College of Psychiatrists, saying that the Mental Capacity Act is not fit for the Bill. Even if we use the Act, many conditions such as depression or delirium —or the effects of some medication—can impact on people’s decision making. It is worrying when someone like Dr Rachel Clarke, who has extensive experience in the Mental Capacity Act and has been training medical students and nurses, says of those mental capacity assessments that
“it is often the case that they are…poorly conducted.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]
Would my hon. Friend agree that rather than use the Mental Capacity Act, the “ability” amendment tabled by the hon. Member for Richmond Park would be more suitable and make the Bill safer?
Naz Shah
I know that my hon. Friend comes from a mental health background and has worked as a professional in this area. I absolutely agree that we need to strengthen the Bill, which is why I will support the amendment. I feel that we must strengthen it because the Secretary of State can make some interventions.
Kit Malthouse
I want to clarify what the Royal College of Psychiatrists actually said, because I realise that the hon. Member is relying a lot on that evidence. In an exchange with me in their oral evidence, the doctor from the royal college said that if I were to equate the decision to refuse treatment with the decision to request a hastening of my death in extremis as qualitatively the same, and of the same seriousness and outcome, then the Mental Capacity Act may well be appropriate for the decision. The difference was information. We would be relying on the notion of informed consent, and therefore on the information that the person was being given about the consequences of that decision.
We will be debating later in Committee the information that is given to a person to form that decision, but I do not think it is quite the case that the psychiatrist said that it could not be or was not fit for purpose. Actually, they said that it may well be sufficient if we equate those two decisions—and many of us do.
Naz Shah
I know the right hon. Member speaks with a huge amount of experience. I am very new to the subject, but I know that the evidence from the psychiatrist was very certain—not “may well be”. The language that they used, which I referred to earlier, was very clear that it is not a good standard. They said:
“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.]
and there is an inequity in assessment using the Mental Capacity Act. There were other categorical statements made—there was no “maybe” in there. For me, a “maybe” does not cut it at this level; the test should be much higher in order to take the option of assisted death.
Kit Malthouse
If the hon. Lady goes to column 277 of Hansard from that oral evidence session, Dr Price said:
“You are equating a refusal of treatment, in capacity terms, to hastening death by assisted dying. If those two things are equated, in terms of the gravity and the quality of the decision, the Mental Capacity Act may well be sufficient, but there are differences. There are differences in the information that the person would need and what they would need to understand.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 277, Q361.]
It is clear what Dr Price said. To be honest, the question was partly prompted as we had become a little confused, because the whole practice of psychiatry in the UK is founded on the Act at the moment. She seemed to be implying that somehow the entire practice of psychiatry in the UK was on unstable ground—and I do not think anybody is claiming that.
Naz Shah
I think that the hon. Member’s intervention responds to some of the points of the right hon. Member for North West Hampshire.
We have heard a lot about the equivalence of endings versus decisions. The example given earlier, of somebody pulling the plug because they did not want treatment any more, happens in very few cases. From my experience of working in the NHS and with disabled people, when people are at the end of life, their cases sometimes do end up in court in front of a judge. That may be because there is a difference of opinion—be it medical, between the family, to do with capacity, or whatever the issue is. We are removing that. My understanding is that the promoter of the Bill is removing the need for the judge and is proposing a panel, which is what I read in The Guardian earlier.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
I wonder whether the hon. Lady can help me with an area of her argument that I am conflicted by. I have heard the points made by my hon. Friend the Member for East Wiltshire, drawing the distinction between those who refuse treatment for a condition that is then terminal and those actively seeking assistance in ending their life. There is a third group who choose to refuse food and nutrition. That is not a treatment in the conventional sense, to combat a disease process, that is normal sustenance that would keep someone alive. Given that the MCA applies to that decision and someone’s ability to refuse on that basis, how does that interplay with the amendment as proposed?
Kim Leadbeater
In respect of those numbers, it is important to be really clear that the vast majority of those circumstances were in the Netherlands and in other jurisdictions that have a much broader set of eligibility criteria than the Bill. We are talking about a very small number of cases in jurisdictions with a similar set of criteria to ours. It is important to make that point.
Naz Shah
My understanding, which comes from Chelsea Roff, was that that happened specifically in places such as Oregon and California, but I am happy to revisit that. Coming back to the point, we must ensure that people with an eating disorder such as anorexia or a mental health condition will be excluded from the Bill. That will be my second amendment. I do not know if that answers the question.
Dr Shastri-Hurst
It may well have been the way that I phrased it, but the point I was seeking to make was that the Mental Capacity Act, as it currently operates, can be used for those patients who choose to refuse food and water. My view would be that that is a distinct group of people who are refusing active treatment. Given the hon. Lady’s distinction between those who refuse treatment in the conventional sense and those who are seeking assisted dying and her view that for the latter group the MCA is not the appropriate mechanism, is she saying that for that group of individuals who refuse food and water—effectively choosing to end their life through starvation—the MCA is not an appropriate mechanism to assess their capacity?
Kim Leadbeater
I do not think that the hon. Member for Solihull West and Shirley is saying that this is about people with eating disorders or anorexia; he is asking about people who are terminally ill who stop eating and drinking. They do that as a course of action to essentially end their own lives. It does happen on a fairly regular basis. We have had testimonies from families who have watched loved ones essentially starve themselves to death. It is different from having an eating disorder or being anorexic.
Rebecca Paul
I think that one of the points being made is the difference between something that is active and something that is passive—for example, someone who chooses not to take that next level of chemotherapy because they have had enough, they have gone through a lot of it or it was painful, and chooses, in the example the hon. Member for Spen Valley just gave, not to eat and drink. That is one case, but it is very different from someone choosing to end their own life, which requires active participation and involves other people too. That would be the key difference, which I wonder if the Member for Bradford West agrees with.
Naz Shah
I do agree. I also want to push back on the idea that it happens fairly regularly. I would welcome my hon. Friend the Member for Spen Valley giving us the evidence of where it says that, because that is not my recollection of the evidence we have gone through so far. I appreciate that we have not gone through all of it; there might be more that we have not seen.
Sojan Joseph
On a point of clarification, under the Mental Capacity Act, if somebody decided to stop eating and drinking, we would let them do it until they became unconscious, and then their best interests would come into effect. We would take them into treatment if there were a risk to their life. Would my hon. Friend agree that that needs to be clarified?
Naz Shah
This whole conversation has taught me that we are not on top of the Mental Capacity Act or the conversation about ability, which is why it is so important to have these conversations, even if it is just to try to get to the nub of the issue. Amendments that I will speak to later will clarify my position, but from the evidence I have heard, I will be supporting the amendment tabled by the hon. Member for Richmond Park. That is because the test needs to be much higher than the Mental Capacity Act on its own when it concerns the issue of choosing assisted dying. For that reason, I will support the amendment.
Juliet Campbell
I thank the Committee for allowing me to reiterate the importance of a stand-alone approach. The use of the Mental Capacity Act must be questioned, as the Act was never intended to legislate for assisted dying. Much of what has been said in favour of using the Mental Capacity Act has been about it being tried and tested, so people understand it and to use anything else would make life complicated for professionals who use it as part of their day-to-day activities in assessing capacity.
On the surface, those reasons do seem reasonable and make the Mental Capacity Act an easy option. If, however, the Act does not pass the threshold of meeting everyone’s needs, convenience should not be the deciding factor. Convenience cannot be considered a sufficient reason to use the Mental Capacity Act, as it is a fundamental element of the Bill. The Bill is in itself enough reason to have an alternative or stand-alone approach to determine an individual’s eligibility to be considered for an assisted death.
Capacity is a complicated issue and cannot be oversimplified for convenience. The MCA may be fit for its current purpose, but it is not fit for the purpose of the assisted dying Bill. I have spent more than 20 years working on the equalities agenda, and one of the things that I have learned—this has been a consistent shortfall—is that we try to address new challenges with old solutions, rather than trying to meet the needs of the people we intend to serve. That is the reason why I will be supporting the amendment.
Stephen Kinnock
The fundamental position of the Government is that the Mental Capacity Act as it stands is a known quantity. It provides the legal base for a whole range of measures and interventions, and the Government’s view is that it would be an adequate legal base to operationalise the Bill should it receive Royal Assent. Our position on it goes no further than that; it is simply a matter of fact that there is a piece of legislation that is a known quantity.
Naz Shah
The Minister makes an important point. I just want to understand something. He speaks on behalf of the Government and says that the Mental Capacity Act is an adequate legal base as it stands. Perhaps the issue is just that I am new to the process—I am happy to be guided, Sir Roger—but we have not had an impact assessment. Normally, Bills do have impact assessments beforehand and the Government go out to consult; they have a consultation process. None of that has happened because the Bill is a private Member’s Bill. I am just trying to understand: is what has been said still true? How do the Government come to that conclusion without all those robust mechanisms that would normally go before a Government Bill?
Kim Leadbeater
That is a point worth making, and something we will look at through the amendments that my hon. Friend has proposed. I am very happy to look at those, as I have already said, but the idea of creating a whole new concept of ability seems wholly unnecessary in the context of a piece of legislation that has stood the test of time for over 20 years.
I come back to training. Although the full details of the training programme that would accompany the Bill cannot be put on the face of the Bill, I have discussed the issue at length with officials in the Department of Health and I have included amendments to that effect. Amendments 186 and 198 specifically state that training must include assessing capacity and assessing whether a person has been coerced or pressured by any other person. Further comprehensive training will be included in regulations set out by the Secretary of State, and the chief medical officer is confident that that is the correct way to proceed.
Furthermore, as has been referred to, there are multiple opportunities within the process to assess capacity by a range of professionals. I have also tabled new clause 8, which would create a duty for the Secretary of State to consult before making regulations relating to training. Within that, there would be a duty to consult not only the Equality and Human Rights Commission, which is important, but persons with expertise in matters relating to whether persons have capacity and whether persons have been coerced.
Naz Shah
To go back to the point about multiple opportunities and capacity, my understanding from this morning’s Guardian is that an amendment has been tabled—it was mentioned earlier; I do not know whether others have had sight of it, but I certainly have not—on potentially having a panel instead of a judge. My hon. Friend the Member for Bexleyheath and Crayford has just asked a question, and my hon. Friend the Member for Spen Valley responded by saying that she would come back to it, but my concern is that we are looking at the clause now, and once we have discussed it there will be no going back to it. I am trying to understand at what stage in the process she will come back and fix it. If we are going to address it under clause 9, clause 8 or wherever, how will that impact on clause 1? How will it address the issues that we are debating right now?
Kim Leadbeater
At the moment, we are addressing the fitness for purpose of the Mental Capacity Act, but there are other amendments that will take on board some of my hon. Friend’s points, particularly about people with learning disabilities. I am very happy to look at that. I am working to table an amendment before the recess, to give the Committee an opportunity to look at it in great detail. My hon. Friend the Member for Bradford West is right that that would provide another opportunity for assessment of capacity with the involvement of psychiatrists and social workers, who have said that that is their expertise and what they excel in, and who feel that they have a valuable role to play in the process.
Kim Leadbeater
Clause 1 is very specifically about the Mental Capacity Act, on which we should get a chance to vote this afternoon. Other amendments can be tabled ahead of Report, but the fitness for purpose of the Mental Capacity Act is a concept on which we will get a chance to vote this afternoon. Other things can be added to the Bill that would enhance other aspects, but the point that we have discussed this afternoon is about the fitness for purpose of the Act. There are different views on the Committee, which is understandable. I believe that using the well-established legal framework of the Mental Capacity Act, introducing gold-standard training and consulting experts in assessing capacity will mean that there is no need to develop a whole new framework around the concept of ability, particularly on the points made by my hon. Friend the Member for Penistone and Stocksbridge. I therefore do not support the amendments.
Naz Shah
I support the amendment for a number of reasons. I have a huge amount of experience of dealing with women, domestic violence and prisons. The first time I came to this House was to lobby the then Labour Home Secretary to reduce my mother’s tariff, because she served 14 years in prison. When my mother was in prison, I was left homeless, so I have experience of that as well. I have experience of, while I was homeless, attempting suicide on two occasions, and I ended up having my stomach pumped. I therefore speak with a reasonable amount of experience in dealing with this.
From a domestic violence point of view, which is why my mother killed an abusive partner, and having been a victim of domestic abuse, I also understand the vulnerabilities concerning women in particular—less so men, although I know the hon. Member for East Wiltshire has done a lot of work on that in his adult life. The majority of women who end up in prison—we have seen this from review of the courts, time and again—are victims of abuse, whether sexual, domestic or another kind. The majority of our women prisoners are in that position.
The suicide rate among the population in England and Wales is 11.4 per 100,000, but for prisoners, that goes up to 108 per 100,000, which is nearly 10 times as high. We also know from research that one third of female prisoners in England and Wales self-harm. We know from the Home Affairs Committee report in the last Parliament on health in the English prison system that standards of health deteriorated in recent years due to budget reduction, loss of prison officers, staff shortages and overcrowding. We know that the Government have had to bring forward early releases, because the prison system is not fit for purpose after the cutbacks of the last 14 years.
All this speaks to me of vulnerability. I hear the points that both the right hon. Member for North West Hampshire and the hon. Member for East Wiltshire have made that, in an ideal world, people should absolutely have equal access to healthcare, but the problem is that we are not in an ideal world. From my perspective, we have a prison system that has had to have emergency interventions since the Labour party came into government, because it is not fit for purpose.
From a healthcare perspective, going back to what Dr Jamilla said and the numerous bits of evidence we heard about health inequalities, I know from a place such as Bradford West that people from ethnic minority backgrounds have less trust in healthcare services. I know that we do not have equity in healthcare services. As a former NHS commissioner, I know that those health inequalities impact on quality of life and that it is a postcode lottery. I am thinking about New Hall women’s prison in Wakefield and Armley prison, which is near Bradford. I am not familiar with London prisons, but I imagine the vulnerability of the women at New Hall. This comes back to the conversation about capacity: by some definition, they might have capacity.
However, we also heard from eminent psychiatrists that when someone has a diagnosis, it impacts on their mental health. In this instance, we are talking about six months, which the right hon. Member for North West Hampshire referred to a number of times. In that six months, access to visitors might not come for another few weeks. A person might not even have a member of their family next to them when they get that diagnosis. They could well be innocent; they could well have been a victim of domestic violence and ended up in prison because they killed an abusive partner after years of abuse.
They could be in a number of situations, but the one thing I concur with is the amount of vulnerability here, in particular for women, which speaks to the issues of capacity and coercion. It speaks to all the things that we are debating here, which is why I support this amendment: it would protect those who are vulnerable. If there was a diagnosis, prison systems would kick in. If someone was given less than six months to live, they would invoke compassionate grounds to leave the prison system, but I would be really uncomfortable seeing anybody in prison being given the option without that comfort.
I cannot imagine being in the position of, say, my mum. I cannot imagine—I would not dare imagine; I do not think I could handle it—the idea of being taken away from my family and being incarcerated, rightfully or wrongfully, guilty or not guilty. I would be in a place, a system and an institution where, depending on which category of prison I was in, the institutional wraparound and the interventions are very different. It depends on the stage of the sentence that somebody is in. If they are in at stage 1 at a category A prison, there are much stricter rules and regulations. Imagine a person being faced with all that and finding out that they have six months to live. As the right hon. Member for North West Hampshire said, there is no guarantee that it is six months—more than 40% of those diagnoses do not turn out to be correct, and they could live longer. What would the impact be on that person? Could they make that decision? From a capacity point of view, I am not sure that that would exist.
Kit Malthouse
The hon. Lady is feeling towards the point I was trying to make, perhaps slightly incoherently. The point is that in my view, whether or not those people have access to this service, it should be based on an assessment of them as themselves, including their mental capacity, particular characteristics and their settled will, just as it would be for everyone else under the Bill. The fact that they are, at that point, a prisoner impacts on the context in which their capacity is assessed, which must be the critical factor. Having a blanket ban on all prisoners, capable or otherwise, seems cruel, if I am honest.
We know that prisons have to assess capacity in difficult circumstances. There are prisoners who decide to decline food and water and starve themselves to death. They are assessed as having capacity, if that is not the case, and in certain circumstances they are force fed, if it is seen that they do not have the capacity to take that decision themselves. In fact, the reason why prisons have created hospices within prisons is to deal with exactly such end of life decisions.
If we are doing it for non-assisted dying, why would we deny people the choice and autonomy, having been assessed as capable of making the decision, to do it in prison? Worse than that, if we are going to release them on compassionate grounds, why would we give them a shorter period to access the service than anybody else?
Naz Shah
I appreciate where the right hon. Member is coming from—I sincerely do. It comes back to the heart of the issue around capacity. We heard from the psychiatrist—her name escapes me, but she was on the right-hand side—that, where there is an increase of vulnerability, if somebody is told they would get pain relief, they would choose an alternative path. Those were similar words, and I will find the reference.
My point is that we do not have equal healthcare access in prison. We provide prisoners with healthcare, but it is in no way equitable. The health inequalities that exist outside prison are bad enough. Palliative care is not fit for purpose in our country—it is a postcode lottery. Depending on which prison someone goes to, that will determine what kind of access they have to palliative care. It is not a level playing field.
Naz Shah
It would be if we were making treatment equitable, but if we apply the test of legality, and this is about pain—we have already seen the amendments tabled by the hon. Member for Harrogate and Knaresborough, which would widen the scope from six months to 12 months—where do we draw the line in terms of equity and legality? The Bill is open to a lot of legal challenges, and if we want to go down that route, there would be plenty of them.
Tom Gordon
There is a fundamental difference between trying to ensure that people have equal access to assisted dying and prohibiting a specific group or category. Does the hon. Member understand that?
Naz Shah
I understand that perfectly well. On the idea of not giving people assisted dying, as the Bill stands, the category also includes people who decide to stop eating or taking insulin and people who decide not to go on dialysis. It includes a whole host of illnesses. If we are talking about the legal challenges, which my hon. Friend the Member for Stroud started with, the legal challenges for the Bill are vast as it stands.
Danny Kruger
On the point of legality, of course a law could be challenged under the European convention on human rights, but Parliament is sovereign. If Parliament decides to exclude a particular category, we in this place have to take this enormous responsibility—we make the law in this country.
Kim Leadbeater
My hon. Friend has listed certain categories of people, and we will come on to the definition of terminal illness. I am confident that, given the definition of terminal illness in the Bill, some of the groups of people she has talked about will not be included in its scope.
Naz Shah
Where does it specify that? I know we are going to debate that subject later, but right now there is nothing that gives me assurance that those people will be excluded. Unless there is an amendment that my hon. Friend the Member for Spen Valley will support, the Bill, as drafted, would still apply to somebody if they decided not to carry on with treatment, or if they decided they did not want to take their insulin or other medication and that would lead to their death. I am happy to give way to my hon. Friend so that she can explain how she is going to deal with that.
Kim Leadbeater
I will. Let me read from the Bill. The definition of “terminal illness” under the Bill is that
“the person has an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.
The conditions that my hon. Friend is describing can be reversed by treatment and are not inevitably progressive. We will come to that debate in due course, but that definition is crucial.
Naz Shah
I beg to differ on the wording that my hon. Friend just used. It actually makes my point. As it stands, if I were an insulin-dependent diabetic—and I have been so on three occasions, with my children— I could say that if I stopped taking that insulin, I would become terminally ill. In the Bill as it stands, and as it is drafted, I would meet the criteria.
Kim Leadbeater
My hon. Friend would not meet the criteria. She might be describing a condition that cannot be reversed, but it is the “inevitably progressive” part that we are talking about. Because it can be treated, it is not an
“inevitably progressive illness, disease or medical condition”.
The Chair
Order. A debate about the definition of “terminal illness” will come later in the Bill, and it might help us all if we were to swiftly move forward to that point.
Sean Woodcock
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?
Naz Shah
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.
Dr Shastri-Hurst
Will the hon. Lady help me to understand her position? Is it a fundamental disagreement with any prisoner having access to assisted dying, or is it a fundamental issue with completing the final act, as set out in clause 18, while being a prisoner? For example, the hon. Lady touched on early release on compassionate grounds. Under those circumstances, there may be a prisoner who has been given a six-month diagnosis, and their early release may not be until the last couple of weeks of their life. Should they be deprived of going through the process and the assessment, albeit not enacting the final act until they have been released?
Naz Shah
Yes, I think there should be a deprivation of that final act, because there are vulnerabilities with that prisoner while they are inside a prison. What they need is not an option of assisted death at that point. That speaks to the amendment that I tabled, which is about making sure that we do not have the conversation in the first four weeks in any case, because a diagnosis of terminal illness affects people’s mental capacity and mental health. We know that: we have heard it from the psychiatrists. It is common sense; it does not take a genius to work it out.
We know that people in prison have additional vulnerabilities. We are having a debate about the issue of capacity, which we have clearly not agreed on. A person-centred care package needs to be about supporting the person, removing vulnerabilities, giving autonomy, and offering choices around accessing palliative care and medication, so that they are in a much stronger position to make an informed choice.
Kit Malthouse
I am grateful to the hon. Lady for allowing me to intervene again. Can she not see that by supporting the hon. Gentleman’s amendment she is basically defining all prisoners as de facto vulnerable? It is not the case. Although many are vulnerable, both my hon. Friend the Member for East Wiltshire and I have met a lot of criminals and prisoners in our time, and quite a lot of them are smart, capable people who made a stupid decision. They are not vulnerable; they deeply regret what they did and go on to live perfectly functional lives.
We should be applying to prisoners exactly the same criteria of assessment—around capacity, vulnerability and settled will—at the time they are diagnosed with a terminal disease as we do to everybody else, because if we are not going to differentiate among prisoners, in many ways we are dehumanising the entire population. We are saying, “You are all vulnerable—no question—and we are excluding you completely on that basis.” As the hon. Member for Harrogate and Knaresborough said, that is in many ways a fundamental denial of a basic human right.
Naz Shah
The idea that it is the fundamental denial of a human right is not quite correct. We are talking about the denial of a provision in a Bill that has not come into law. It is a potential legal position; it is not necessarily a human right yet. If the Bill comes into force, at that point it becomes an option that could be denied. There are many prisoners. Prison serves many purposes, one of which is to reform. There will be many prisoners who go in there and get a degree in criminality because they are surrounded by other prisoners. There are people who make choices.
In the first four weeks we should not have the conversation around assisted death in any case. I have tabled an amendment to that effect and will speak to it when we come to it. In the meantime, a person has an added layer of pressure if they are in prison. It does not mean that everybody is necessarily vulnerable from a starting position. I agree that there may be prisoners who are not vulnerable, but there is an added pressure if somebody is homeless or in prison, not having family or security, that would no doubt compound their mental health. Whether that is a slight or a large impact is for somebody else to assess, but as it is I support the amendment.
Tom Gordon
I can understand where the hon. Lady is coming from, but I wonder whether she has any specific examples of groups such as people who are homeless or prisoners having other rights denied to them. That is what I am struggling with, although I can understand her point about people being vulnerable. The only other example that strikes me is that people who are incarcerated are unable to vote. I cannot think of any other instance where people would have any particular right removed from them. Does the hon. Lady have any other examples or comparable situations she can share to help us?
Danny Kruger
Prisoners are denied their liberty, not just their vote. They are treated as a single class of people who the state has specific responsibilities for, because it essentially owns them for the time that they are incarcerated. Prisoners have particular protections, but they are also denied a whole range of human rights and opportunities that the rest of society can have. It is not inappropriate to treat prisoners as a distinct class of people to whom the state has a specific responsibility.
Sojan Joseph
I want to contribute to this discussion based on my experience as a mental health nurse. I worked in mental health services for 22 years, including managing a medium secure forensic unit. I have worked with many homeless people and people who were detained under the Mental Health Act by the criminal justice system in those medium secure units and who had been involved in criminal activities.
With my experience, I can categorically say that that group of people is very vulnerable. As the hon. Member for East Wiltshire said, self-harming and suicidal tendencies are very high among that group. As part of the risk assessments that we carry out in the mental health system, one of the questions is whether they are homeless. That question is asked to identify that vulnerability.
These amendments bring up the importance of a psychosocial assessment, which was highlighted in many pieces of our oral evidence. If we are looking to bring more safeguards into this Bill, that is something we should consider to safeguard this group of people.
I want to make one more point about what the right hon. Member for North West Hampshire said: not all homeless people are homeless in the same way; some people choose to sleep rough. I am not clear whether, if somebody is sleeping rough and is diagnosed with a terminal illness, we are looking to bring them back into an NHS bed to assist them to die. I do not know whether there is a provision to identify how we would manage those sorts of situations.
Stephen Kinnock
The amendments relate to the criteria that individuals would need to meet to request assistance to die under the Bill. All the amendments seek to amend the eligibility criteria in some manner. To reiterate, the Government have no view on the policy questions pertaining to the amendments, and my role here is to offer observations on the legal and practical impact of amendments tabled. The legal impact of these amendments will be the main focus of my remarks.
Amendment 353 seeks to make prisoners ineligible for assisted dying services even if they meet the definition of having a terminal illness. Amendments 354 and 355 are consequential amendments that would make it a requirement for the co-ordinating doctor in the first assessment and the court process to ascertain whether a person seeking assistance to end their own life is a prisoner.
Aside from the right to liberty, article 5 of the European convention on human rights requires that prisoners should have the same rights as those who are not prisoners. The rights engaged by the amendment are article 8 on the right to respect for private and family life and article 14 on the protection from discrimination. Making prisoners ineligible for assisted dying would, on the face of it, lead to a difference in treatment between prisoners and non-prisoners that would need to be objectively and reasonably justified. The justification test requires that the treatment in question is a proportionate means of achieving a legitimate aim.
Juliet Campbell
I still think that it is important to add “demonstrably”. The word should be included; I do not see that it would create any additional confusion. The right hon. Member for North West Hampshire said that he had tabled some amendments later on in the Bill. However, that is later on. Putting in “demonstrably” here would strengthen his proposal.
Naz Shah
Does my hon. Friend share my frustration that when the Minister says, “This is the Government’s position,” he says so in the absence of an equality assessment or impact assessment? I appreciate that the Government have outlined that the process is different, but in the absence of those assessments, where do we find the weight to support those positions?
Juliet Campbell
I absolutely agree. The word “demonstrably” could produce that weight. It could add to every other part of the Bill that a person must be able to demonstrate to health and social care professionals that they understand what assisted dying is and understand the process that will be gone through. The person needs to be able to demonstrate to other professionals that they understand. A written report by a health or social care professional is not enough; the person themselves will have to demonstrate that they have a full and clear understanding.
Terminally Ill Adults (End of Life) Bill (Eighth sitting)
Naz Shah ExcerptsTuesday 11th February 2025
(1 month ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 11 February 2025 - (11 Feb 2025)
The Chair
I thank the Member for making that point of order. It is normal practice for evidence to come in, and for it to be submitted as it comes in. However, due to the large amount of evidence and its substance, and to the importance of the Bill and this line-by-line scrutiny, I will seek the advice of the Clerk and will come back to him.
Naz Shah (Bradford West) (Lab)
Further to that point of order, Ms McVey. My concern is about written evidence that has been submitted but not yet read—I have certainly not been through the last batch of evidence that we have had. How do we proceed when, for example, we might have gone through clauses 1 and 2, or even up to clause 4 or 5, and we receive evidence related to those clauses? We will have already discussed them in Committee. We have been told we will only get five hours on Report, while on Second Reading more than 100 MPs, including me, were unable to speak. The evidence could inform amendments. I am struggling to understand how this will be workable. I would value your advice.
The Chair
I am pleased that people feel they are free to make those points. It is for the Committee to decide how fast to move through the Bill.
Sarah Olney
I heard Sir Chris Whitty in particular say that it would be preferable to have a more straightforward Bill that did not have too many bureaucratic hurdles for people to overcome. That was why he was keen for the Mental Capacity Act to be retained. However, I tabled the amendment precisely because, when people are thinking about whether assisted dying is an appropriate decision for them, I do not think that it is safe for them to be judged merely on the basis of their capacity. It is by no means my intention to increase bureaucracy; I am merely proposing that the Act is not sufficient in this case.
Naz Shah
Three psychiatrists gave evidence to the Committee in person: Professor Allan House, Dr Annabel Price, of the Royal College of Psychiatrists, and Professor Gareth Owen. All expressed doubts about the use of the Mental Capacity Act to assess whether a person was in a fit state of mind to undertake assisted dying. Does the hon. Lady agree that we should place great weight on the opinion of psychiatrists when assessing whether the Act should be used to assess applicants for assisted dying? It is a horse before the cart scenario, because the Act was not made for this context; when it was passed, we were not talking about the ability to choose to die.
Sarah Olney
I agree exactly with the hon. Lady’s point. The Act was not designed for this purpose, and it is essential that we carefully scrutinise whether it should be used in this way.
Dr Tidball
I appreciate the hon. Member’s intervention, but I do not agree. Taken together, the parameters around the six-month limit, clause 2(3) and the requirement for a mental capacity test cumulatively create a safeguard in the Bill.
Importantly, the MCA’s two-stage capacity test is already underpinned by robust safeguards, which address exactly the issue the hon. Gentleman raised. Stage one asks whether there is a disturbance or impairment in the person’s brain or mind, and stage two asks whether the disturbance or impairment is severe enough that the person cannot make a specific decision. That two-stage test already deals with the issue he raised. The references to the Mental Capacity Act in the relevant clauses of the Bill ensure, crucially, that we import that test too.
Elements of the language in the new concept of ability proposed by the hon. Member for Richmond Park appear to attempt to echo the second stage of the Mental Capacity Act test, as just described. That has four elements: understanding information about the decision to be made, retaining that information in the mind, using or weighing that information as part of the decision-making process, and communicating the decision by talking, using sign language or any other means. It is important to say that those core elements are built on the scaffolding of the five principles of the MCA, working in a progressive way.
Opposition Members talked about the unwise decision, but the principles in the Mental Capacity Act work collectively and cumulatively together. That is only one step, then, which is followed by the fact that decisions must be taken in the person’s best interest, and there is well-worn and well-trodden understanding of how we ascertain that. It is important that those things all work together. The issue is already addressed under the MCA; if we do away with the MCA, we lose not only the scaffolding of the five principles, but the important safeguards of the two-stage test.
Naz Shah
My hon. Friend made reference to that already being done, but where is the evidence that the capacity stage she talked about is actually happening? We had evidence from the Royal College of Psychiatrists and, as she said, Professor Chris Whitty. Where is the evidence that it is being done well, as things stand?
Dr Tidball
I do not have a list of the case law in front of me—I am sure it will be possible for that to be found for my hon. Friend—but it is done regularly. The Mental Capacity Act is used regularly in decisions about the withdrawal of life-support treatment. That is the case, and she is welcome to search for the case law.
Dr Shastri-Hurst
The hon. Member makes a reasonable point. I agree with her on many issues, but on this issue I have some reservations. Clause 18(4) says:
“The coordinating doctor must be satisfied, at the time the approved substance is provided, that the person to whom it is provided…has capacity…has a clear, settled and informed wish to end their own life”.
Of course, under the wording of section 26(1) of the Mental Capacity Act, that decision can be made at an earlier time and deemed to have currency, once capacity has been lost, for its enactment at a later date. I think that there could be a minor tightening of the wording or reassurances from Government to address that, but it is an important point to raise and air.
The Chair
Order. Before we proceed any further, I remind hon. Members that we are discussing capacity and ability.
Naz Shah
I am just trying to understand what the hon. Member is communicating. Under the Bill, if somebody has anorexia, diabetes or kidney failure and has the capacity to make that decision because they meet the criteria for the capacity to refuse treatment, will that mean that they can decide to sign up to this option?
Dr Shastri-Hurst
The Bill is very clear in determining that it is for those who have a progressive illness, disease or medical condition that cannot be reversed by treatment. On my reading of the Bill, it excludes that category of individuals who choose not to engage with treatment that in ordinary circumstances would prevent the progression or deterioration of their condition. I therefore do not see it as analogous with the hon. Member’s scenario of someone who could have a long life expectancy if they had taken their treatment, but who chooses not to. That is not captured within the Bill, in my interpretation.
Naz Shah
I am struggling with this, because it is clear from the evidence from our witnesses that that is the case where somebody has anorexia, for example, and they make that choice. As has been referred to plenty of times in the context of the Bill, the Mental Capacity Act has been used, and is sufficiently used, for people to withdraw treatment. Personally, I think that that is a pretty false equivalence, because when a person’s life support machine is turned off, the decision is made not by the person receiving lifesaving treatment, but by their loved ones.
According to what we have heard this morning, if someone has the mental capacity to use the MCA to withdraw treatment for a condition, that will lead to a diagnosis of terminal illness. It could kill someone. If I refused to take insulin, and I was diabetic, I would have the mental capacity to say, “Actually, I’m not going to take this treatment, so can I make a decision?” I am just trying to check the hon. Gentleman’s understanding.
Dr Shastri-Hurst
With the greatest respect to the hon. Member, I think that she is conflating two issues. Someone can stop treatment under the MCA; over time, that will lead progressively to death, with some conditions—she gave the example of being a diabetic without insulin—but that would not be a terminal illness in reference to this Bill. The Bill is very clear that it is about an inevitable and progressive illness, disease, or medical condition that cannot be reversed by treatment. Diabetes, treated with insulin, is not a progressive condition that becomes a terminal diagnosis; it is terminal only by virtue of somebody refusing treatment, which therefore would not be captured within the Bill.
Terminally Ill Adults (End of Life) Bill (Seventh sitting)
Naz Shah ExcerptsThursday 30th January 2025
(1 month, 1 week ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 30 January 2025 - (30 Jan 2025)
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Dr Ward: Look: assisted dying is the same as any other healthcare choice. It is always going to be limited. We are not going to reach everyone that we absolutely would want to. There are people who want to have this option and this choice who will not qualify under a terminal illness definition, but we have to draw the line somewhere. We looked at international evidence from Commonwealth countries that are very closely linked to Scotland and the UK. We drew the line with the definition that the person has an advanced progressive illness from which they are unable to recover and that will cause their premature death. For us, that demands the support of Members of Parliament in Scotland and the support of the public.
I really stress the fact that each jurisdiction has to legislate according to its own constitutional, societal, legal and cultural considerations, which is what we have done in Scotland. That is the definition that is working for us now. Previously, there were more liberal attempts that did not gain the support of the House. We believe that we have arrived at a situation that is very similar to the definition of terminal illness here in Westminster, and that is both safe and compassionate but also draws the line so that people who should not be able to access this do not.
Naz Shah (Bradford West) (Lab)
Q
Professor Owen: This is an essential question. I work clinically in the over-65 age group, where there is a lot of terminal illness, some of it in the last six months. You have to understand the population. The population is typically over 65 and frail. There can be a terminal illness, very typically with comorbidity. That comorbidity is often mental health comorbidity. Depression is at rates of 20% or thereabouts. Delirium and cognitive impairment is very common and often not picked up. There is patchy safeguarding, patchy access to social care and, as I know you have been hearing, patchy access to palliative care.
That is the ordinary person in the NHS. I know people who select into assisted dying are not necessarily that mean person, so to speak, but that is just a picture of what it looks like for me when I go to work. That is where one starts. Now think about burden. Well, this is a group that do feel very burdened. You might think some of that is excessive; some of it maybe is natural, given the life stage. So it is a mixed picture.
When it comes to pressure and coercion, I know you have been grappling with this a lot as a Committee, and I know there have been some amendments that address this. We have talked about clause 26 particularly in relation to this. Of course, when it comes back to the training question, you can take evidence on the state of safeguarding and how people are really able to assess coercive control, domestic violence and so on.
I would like to draw attention to something else that I am not sure has come so much to the attention of the Committee, which is not the offences or the criminal side of this; it is the common or garden capacity assessment side of it. This relates really to clause 1. It is the issue of how you deal with interpersonal pressures on somebody in a situation where there may be a mental health problem and there may not even be a diagnosis. You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability. But it is there and it is interacting with a form of pressure within a family, let us say, which is often not malign in its intentions, but it exists. It is a very overvalued relationship, for example, with a strong sense of loyalty to somebody, or an enmeshment, for example.
What you have are situations where there is an impairment and also an interpersonal pressure. They interact and they amplify each other. That can have an important consequence in terms of the functional ability of mental capacity. Outside of the assisted dying context, when you look at that in the Court of Protection, which has been struggling with quite a lot of cases like this, that phenomenon of interaction that I am talking about between interpersonal pressure and impairment is recognised. It struggles with it. I have been involved in some research to try to structure the understanding of it, but it is not at the point where it is a kind of training manual that you can lift down from the shelf and roll out across the workforce. It is much more in a kind of research and development phase.
So it is important to draw attention to pressure not necessarily as malign in its intention, but which nevertheless operates in these situations and can have a subtle impact on the functional test of decision-making capacity. To bring us back to what the decision-making capacity is that we are talking about, it is the decision to end one’s own life.
Bambos Charalambous (Southgate and Wood Green) (Lab)
Q
Dr Ward: I heard the session yesterday and would agree with the comments that were made there, particularly around proportionality. Article 2 is an absolute right —the right to life—whereas article 8 is a qualified right. Again, it is about that balancing act. The courts have been very clear that we need to protect vulnerable people, and I feel strongly that the Bill straddles that very well by giving choice but in a very limited set of circumstances.
On the Equality Act, there have been some claims made—this happened in Scotland—that the definition of disability in the Equality Act would cover people who are terminally ill. That that is not my reading of it, and that position is widely shared by the people advising us in Scotland on the legal capacity. That is all I have to say.
Professor Hoyano: I would only point out to the Committee that the common law entrenched the human rights of the patient a long time before the Human Rights Act 1998. We must remember that we do not just have to look at the European convention and Strasbourg. The common law has been very active in entrenching fundamental principles of the rights of the patient, particularly their autonomy in decision making regarding their own body, since long before the HRA.
Naz Shah
Q
Professor Owen: There are a lot of gaps. Take that point as I intend it—I do not say it as a downer on this project; I say it because it is true. There are just a lot of gaps. We are going into uncharted territory, so you might think it would be good to have more of a map before we start. This is one area where there are evidentiary gaps. It is not clear how those sorts of interactions should be assessed, what sorts of threshold should be set or what kind of training should be available. There has been a lot of talk about training; training is all very well and good, but you need to know what the point and purpose of the training is. The training has to be valid before you can roll it out. There are lots of gaps here.
That relates to the question of mental capacity assessment. It is often said, “Why are we worried about mental capacity? We have so much experience of doing it in health and social care contexts; we have the Mental Capacity Act, the Court of Protection and all this experience.” We do, and that extremely important work has been done since the parliamentary discussions you had about the Mental Capacity Act all those years ago. In some areas, it is being done reasonably well: in relation to treatment and care residents’ decisions, one can talk about a body of professionals who understand the concepts, can do the assessments and can achieve, at least when trained, good levels of agreement, so you can get the system to work.
But in areas of decision making where the decision itself is unsettled or conceptually much more profound or novel—I would suggest that the decision to end one’s own life has those characteristics—you cannot expect there to be such levels of reliability. That can be shown empirically in other areas where the decision making is unsettled. The question of how well capacity assessment works is actually matter-specific. That should not surprise us, because the whole concept of mental capacity is that it is matter-specific. That is the whole functional idea of mental capacity. The matter here is of the decision making to end one’s own life.
The Chair
That brings us to the end of the allocated time for the Committee to ask questions. I thank the witnesses on behalf of the Committee for their evidence.
Examination of Witnesses
Professor Preston, Dr Richards and Claire Williams gave evidence.
Dr Tidball
Yes.
Dr Richards: Maybe Nancy knows the evidence on that. Talking about gaps in research, I am an anthropologist, so I am interested in the discourse and the conversations that are happening, and I think there is a lack of evidence about that. We have a lot of evidence where it is tick boxes, for example, about motivations and procedure being following. We have less qualitative, in-depth, interactional evidence about that kind of holistic decision making.
Professor Preston: We have done some research where we interviewed doctors and healthcare workers who have had those conversations. The majority decide against it, but they are still having those conversations. We also heard the experience of the bereaved family, and what it was like to have those conversations. On the whole, the conversation is predominantly about palliative care—“Can we do something different? How can we meet and assess your needs?”
In some cases, the doctors in palliative care, particularly in Switzerland, certainly would never suggest assisted dying, but if the patient asks for it, they equally do not advise them how to get an assisted death. In some cases they said they sort of consciously blocked the conversation, so that the person timed out and could not have it. The emphasis is perhaps the other way in places like the Netherlands and Belgium, where it has been around longer and is much more integrated into other services, such as care homes and palliative care, as part of a holistic assessment.
I remember visiting a team in the Netherlands, and when they got a new patient they said, “We assess them for their preferences about whether they want to die, about resuscitation, about advance care planning and about euthanasia.” My jaw dropped; I was British—this was illegal. They do it in such a natural way. They said, “We need to plan that for them, because we need to understand what is right for them.” They are not suggesting it—they are just trying to take it on board. I would say that the predominance of the conversation is about palliative care, but if the patient wants the assisted death, they either might assist—which is rare—or suggest how they go to a right-to-die association. But more likely they will still tell them how palliative care can help.
Naz Shah
Q
“Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.”
What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that?
Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
Q
Claire Williams: I absolutely agree that a panel/committee approach would have better safeguarding for patients, because the decision is being made collectively with legal expertise and with other healthcare professionals—that might be palliative—or ethicists like myself. It is having that collective view, ensuring that everybody is happy and that that is exactly what the patient wants. I believe it should be a committee/panel-based approach for the final decision. As I said before, expecting a High Court judge—just one individual—to make that decision alone is hugely burdensome and not an approach that we should be taking.
Naz Shah
Q
Dr Richards: It would have to be. Those examples that you have just given would not mean that it was not an explicit conversation.
The Chair
Before we move to the next panel, is there anyone else who has pressing questions, or would you prefer to have a five-minute comfort break?
Naz Shah
Q
Dr Richards: I do not really understand why the case of terminal anorexia would be different to any other case in terms of the conversation. It would be necessary to have a very explicit conversation with somebody requesting assisted death; it does not matter what their illness is.
On the issue of anorexia, the numbers are really tiny. In the Oregon model, which is what is in the Bill, you are talking about one or two people in the history of assisted dying. It is a very minor issue to get focused on. I have seen so much about this in the press and being discussed here. If you are very concerned about terminal anorexia, I am sure you could do some tinkering with the Bill so that people would not be eligible for assisted dying, but in terms of the empirical data in jurisdictions that have legalised the Oregon model, which is what this is, there are one or two cases.
This should not be given a huge amount of time, because it is a distraction from the fact that really we are talking about a new mode of dying, which is a cultural response. Just as palliative care is a cultural response to suffering at the end of life, so is assisted dying. It is a different track; it is offering something different. Different types of people will want to go for that. It is a response to the protracted dying trajectory that we see now, which is new. In the history of human dying, we have never taken so long to die before. There has never been so much medical intervention at the end of life, and assisted dying is a cultural response to that. To get fixated on the two people with terminal anorexia who have accessed assisted dying in the States is a bit of a red herring.
Danny Kruger
Q
Pat Malone: She would not qualify, because there was no telling how long she would live as a live brain in a dead body, as she said. It could have been months or even years, so she would not qualify in any case under this Bill. However, you have moved mountains to get to this point, so the last thing in the world I want to do is pile more requirements on the Bill. I would like to see some stuff stripped out of it, actually, to make it easier, but I am not going to ask for that because we desperately need to get away from the status quo. This Bill gets us away from the status quo.
Naz Shah
Q
Julie Thienpont: Maybe I said “counselling”, but it was not a session of counselling. It was somebody asking my opinion to check that I was 100% behind Guy. His son also did that by proxy—via us—because he was in a different part of Spain. They wanted to ensure that he had talked it over with family members. It was not hastened along, because he had been given a short life span, so it did not take terribly long. He had to wait about three weeks before the initial ball started rolling, and then two weeks later a family doctor and nurses from the hospital came round for form filling, reading through, translating and signatures, and again another two weeks after that. Each time, I believe it went before a panel. We did not, but the paperwork had to go before a panel. They were left in no uncertain terms that that was the way he wanted to end his life.
It was a very peaceful, serene and beautiful death, as opposed to what it would have been like. He was able to speak to his relatives in Australia, his brothers in Belgium and other family members, and I was able to hold his hand. Guy had always been a bit of an old cowboy, and he always said that he wanted to die with his boots on. I am proud to say that that is what he did. At the end, we were holding hands, and I said to him, “Don’t be afraid.” He said, “I’m not afraid,” and he winked at me just before he closed his eyes.
On the process, perhaps I should have said that it was intravenous, so he had a drip in each arm. It was quite a quick process—maybe 10 to 15 minutes, which I thought was quite quick—but we had had lots of time that morning, you know. It was a beautiful end—the wink especially. I am left with very good memories of such a peaceful death, which was going to happen regardless. He was at peace with it, so that helped me.
Naz Shah
Q
Liz Reed: I understand the big focus on coercion. It is very similar in Australia. The difference between the Queensland Bill, specifically, and the Bill proposed here is that, in the Queensland Bill, coercion is punishable both ways: you can be punished for trying to coerce someone into an assisted death but also for trying to change their mind the other way. Those safeguards are in place because you hear anecdotally from practitioners that, broadly, people are being coerced out of this.
In our experience, the day before my brother died our mum said to him, “Are you sure?” She was not trying to coerce him, but was she trying to make him go on longer? Absolutely. That is her son, and that is completely natural and normal. She did not want to see him die. His response was, “This isn’t living.”
Naz Shah
Thank you very much.
Pat Malone: As far as my brother and sister were concerned, there was no check for coercion. There needs to be, as in the Bill, but there are many more safeguards in the Bill than there are now. The people who are contemplating suicide now have no safeguards at all.
Dr Shastri-Hurst
Q
Dr Mulholland: We are aware that we have a range of views in RCGP across general practitioners. Some of them have very strong views for or against based on moral grounds, and some of those are based on religious grounds—traditional conscientious objection grounds. But others do not want to take part in assisted dying just because they do not want to; they do not feel it is part of what being a GP is, or part of what they trained for.
In discussion with colleagues today, someone shared with me that for 35 years they have spent their time trying to extend the life of patients—that has been our role—and to help them towards the end of life. It is a philosophical change if they start to think about whether the patient’s life should end earlier. There are some colleagues who may decide that for those reasons, they do not want to take part in this. There will be others who very definitely do. We have that range, so we feel that a doctor or a health professional should have the right not to take part on any ground, and that should be protected—they should not feel the obligation to do something that they do not feel is within their wishes.
Naz Shah
Q
Dr Price: There is a lot of research evidence around depression in people with palliative care needs and people nearing the end of life. We know that depression is common, and across a number of studies it is at around 20%—much more common than in the general population. We know that depression is strongly associated with a wish to hasten death, and that if depression is found and treated in that group of patients, there will be significant change in the wish to hasten death.
There are a number of associations other than depression with a wish to hasten death, and they include difficult symptom experience, poor functional status—needing a lot of help with things—and being socially isolated. Those are really key ones. They also include a sense of loss of dignity and feeling like a burden on others. These things can all come together to make life feel very unbearable. We know that there is also an overlap between a wish to hasten death, which is a response to suffering, and feeling that one is better off dead, ending one’s own life or harming oneself. I was involved in a study where we asked people both the wording of “a wish to hasten death” and the suicide question from the PHQ9, which is a depression screening tool. Those who had a wish to hasten death were 18 times more likely to also feel suicidal, according to the psychiatric definition, than people who did not have a wish to hasten death. There is a strong association.
Lewis Atkinson
Q
“the more serious the decision, the greater the level of capacity”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]
and that it is used in tens, if not hundreds, of life and death cases in the NHS every week. The example he gave was someone refusing blood products that they would need to continue their life. In the light of that, I suppose I am a bit confused about your evidence saying that the MCA is not suitable for life or death decisions of this type. Do you think the MCA is not fit for purpose for those current life or death decisions that are being made, or is there something about the life or death decisions that would be made in an assisted dying context that makes that different?
Dr Price: The assumption that the Mental Capacity Act can translate neatly into this specific decision without a really clear sense of what that would look like in clinical practice is something that needs more careful thought.
I was involved in research in this area, and one of the things that I did was to scrutinise the concept of capacity as discussed in a number of forums—for example, the Commission on Assisted Dying, discussions in the House of Lords, and also interviews with doctors in England and Wales and in Oregon. There is a broad sense of what capacity is. For some, it is a very tight, cognitive definition that would mean that in practice, in assisted dying, most people would be found to be capacitous. Those who advocate a much broader sense of what capacity is—these can be contained within the framework of the Mental Capacity Act—would advocate a much broader sense of what that is, thinking about values and the person’s life experience and making more judgments, really, about that person’s life in a general sense.
What I do not think we have really pinned down is what concept of capacity is operating in the thoughts behind this Bill. Is it enough to say that we will essentially refer to the Mental Capacity Act, or do we need to be more specific about what is capacity for this decision? Is it sufficient to say, “We will refer out”, or do we need it on the face of the Bill so that anybody assessing capacity for this decision knows exactly what they should be doing and exactly how they should be having that conversation? Even though you may be operating within a legal framework, I think that the actual conversation —the actual content—will vary across practitioners. Is that good enough? Is that sufficient? Is that a good enough standard? When I do a capacity assessment, I have in mind that it may be appealed against—that is somebody’s right—and it should be available for scrutiny by a court. Essentially, that is the standard we are looking for, so it needs to be clear where the standard lies.
The Chair
There are three people left who want to ask questions, so can I beg for brevity?
Naz Shah
Q
“The very act of raising assisted dying in that way will make that vulnerable patient think, ‘God, is this doctor telling me that my life is not worth living any more?’”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 75, Q93.]
We heard from Dr Jamilla Hussain yesterday. She talked about mistrust of the NHS, particularly post-covid, where people had DNRs attached to them—disabled people and people of ethnic minority backgrounds in particular. Dan, are you concerned about the potential impact on people with learning disabilities?
Dan Scorer: Yes. One of the first things that I said earlier was about how the initiation of that first conversation is potentially an extremely risky and dangerous moment for people with a learning disability who are terminally ill. Your question is absolutely spot on, from the point of view that it could be highly suggestive and push people on a course that they may not want to go down. That is why I am suggesting that that initial conversation has to be incredibly well supported and structured.
There should, in our view, be an advocate who is supporting the person and preparing them for that discussion. Under the principles of the Mental Capacity Act 2005, the person should have accessible information in advance of that discussion so that they are fully informed about all their rights in terms of treatment options at end of life. That discussion with a clinician should not be taking place until the person has been able to consider that information and have support from an advocate, so when the conversation does happen the person is fully informed and has had time to think about what their wishes might be. That would reduce the risk, which is absolutely there, that people could take the initiation of that discussion as a statement, “This is what you should do.” We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.
Dr Tidball
Q
Dan Scorer: There are a couple of things that I would like to say in response. One is about clause 31, on guidance from chief medical officers. Immediately, I would say that people with a learning disability should be involved in the development of that guidance from chief medical officers. That guidance will be key to many of the issues that we have discussed.
Clause 35 is about the review of the Act. The lived experience of people is absolutely vital to that. The Bill says that it will be five years until we have that review. Our view is that that is far too long. If the Bill becomes law and if there are really serious issues and discrimination taking place against people, we will want to know that a lot earlier than in five years’ time, and we will want action to be taken. Our suggestion is that review should be earlier. We would want to see strong representation from patient groups across that, as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.
Lewis Atkinson
Q
Although it is not my area, I absolutely note the concerns and the discussion about respecting the democratic will of the Senedd in these matters. Would you suggest any potential avenues in the Bill to incorporate an element of positive affirmation by the Senedd, or its consent? What do you suggest we look at?
Professor Lewis: Formally, there is a need in any event for a legislative consent motion in relation to the specific bits I mentioned earlier, I have suggested one potential avenue, which is that the Senedd and Welsh Government take on responsibility for whether and when the Act commences in Wales. Another option might be to do a thorough “think once, think twice, think Wales” review to see to what extent other functions of the Secretary of State might be better exercised in Wales by the Welsh Ministers. That is a non-exhaustive list, but I hope it helps.
Naz Shah
Q
Dr Price: The evidence that we have from research—this is in populations who would fulfil the criteria in terms of terminal illness—is that the prevalence of depression is around 20%. That is across a number of populations. It is associated with a wish to hasten death. Depression might impact upon that person’s decision making; I am not saying that it absolutely would, but it might. Also, treatment might change their view. We know that there is a strong association, for example, between pain and a wish to hasten death. Unresolved physical symptoms make people want to die, and when that pain is better, people no longer feel that way.
That is borne out in my clinical practice. We will get urgent referrals to see somebody who wants to die and who they are very concerned about. Then the pain is under control: we see them that day or the next day and they say, “Do you know what? The pain’s better. I don’t feel like that any more.” When we think about symptoms, we need to think carefully about what is treatable and what is remediable. That may be about psychiatric interventions, but it is often about a biological, psychological and social approach.
The Chair
May I thank the panel for giving evidence today? We really appreciate your attendance.
Terminally Ill Adults (End of Life) Bill (Sixth sitting)
Naz Shah ExcerptsThursday 30th January 2025
(1 month, 1 week ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 30 January 2025 - (30 Jan 2025)
Dr Opher
Q
Dr Furst: There have been no failures of treatment in South Australia, as far as I am aware. I am not aware of any other particular ones around the country that have been heavily broadcast to us.
Naz Shah (Bradford West) (Lab)
Q
Dr Furst: Every legislation within Australia is slightly different. For South Australia and Victoria, you are correct—well, there is pretty much no obligation all around Australia for a doctor to be present for self-administration. The reason for that is to give individuals autonomy over their death, and over the time and place of their choosing. We in South Australia do touch base with what we call the individual’s contact person to understand if there have been any complications and to check in after the death. A large number of our patients, though, will seek out support from a voluntary assisted dying nurse navigator, who is often present in the house just as a support person. We do also have a lot of feedback from them as to any complications, but the doctor often, or a nurse, will come at a later time to declare life extinct.
The reasoning was that we did not think that there would be complications and we wanted to give people autonomy. We work on a permit system in a lot of jurisdictions in Australia, so people have a permit; they get given their substance and they can take their substance at a time of their choosing. They might have the substance in their house for weeks or months, potentially. Again, there is no obligation to follow through with taking that substance, which we also think is quite important. We know that in Australia, about 30% of patients who have a permit or who are approved for voluntary assisted dying actually decide that they do not want to consume the substance, but it is about giving them that choice and autonomy, and the strength to maybe pursue other lines of therapy.
Naz Shah
Q
Dr Furst: I am in South Australia, but a recent survey by Palliative Care Australia surveyed over 900 palliative care specialists, and more than 80% of patients receiving voluntary assisted dying are actually getting combined palliative care and voluntary assisted dying. In our legislation in South Australia, there are key provisions for the monitoring of the funding to palliative care to ensure that no palliative care funding is diverted to voluntary assisted dying, but we feel very strongly that palliative care and voluntary assisted dying should go hand in hand. That is a feeling that is being seen around the country now. Palliative care physicians who are finishing off training now see voluntary assisted dying as part of their core business. It is no longer seen as something that should be provided by separate practitioners. It is really becoming quite integrated.
Professor Blake: I am coming in from Western Australia. We were the second jurisdiction in Australia to introduce voluntary assisted dying laws. Ours have been operative since July 2021, so we have had the opportunity to collect quite a lot of data. Year on year, the number of people utilising voluntary assisted dying in Western Australia is increasing. In the year 2023-24, there were 292 deaths by voluntary assisted dying, which represented 1.6% of WA deaths. I agree with Chloe and confirm her view around the palliative care side of things: 83.8% of those persons who accessed voluntary assisted dying were also accessing palliative care.
Sarah Green (Chesham and Amersham) (LD)
Q
Dr Furst: It has been a journey, certainly. Victoria started their voluntary assisted dying in 2019. I would be lying if I said that the palliative care community were completely on board with it at that point, but over the last five to six years there has been a real shift in mentality. We have seen that they can go hand in hand. Palliative care is about end-of-life choices. Voluntary assisted dying is about end-of-life choices. It is about putting the patient and the individual front and centre, and working with them. That is fundamental to palliative care. We have realised that voluntary assisted dying is a promotion of palliative care and it gives back choices.
Probably some of the older palliative care clinicians have not embraced voluntary assisted dying quite as much. That is probably very generalised, but certainly new consultants and new doctors that are coming through really see this as something that they want to do. I do not think that there is any animosity any more between the practitioners that choose to work in this space and those that do not. I get huge amounts of support from other palliative care physicians that do not necessarily act as practitioners. There is no real divide. It has been embraced, to be honest. In another five years, I think there will probably be very few palliative care practitioners who do not support this, unless they are true conscientious objectors for their own reasons—I guess, probably religious reasons. Palliative Care Australia and the peak medical bodies in Australia have generally shifted to see this as part of patient choice.
Alex Greenwich: The journey to voluntary assisted dying in New South Wales, and indeed across every Australian state, has benefited palliative care access and funding. In New South Wales, 85% of people who have accessed voluntary assisted dying are receiving palliative care. As part of the process, the co-ordinating and consulting practitioners also advise them on palliative care. The doctors are trained on the latest advances in palliative care. Baked into the principles of our legislation is access to palliative care for all citizens of New South Wales. Importantly, throughout our debate, whether Members supported or opposed the reform, our entire Parliament came together to ensure palliative care received an increase in funding and any access issues were addressed. The Australian experience with voluntary assisted dying is that it benefits and strengthens the palliative care system.
Professor Blake: Can I can I add to that? The Voluntary Assisted Dying Board in WA, as in all the other jurisdictions, produces a report. The very strong sentiment of the Voluntary Assisted Dying Board, and indeed within the Western Australia community, is that voluntary assisted dying is seen as part of the end-of-life journey. The board’s report states that the statistics and experience of Western Australians
“confirms…that voluntary assisted dying is an established and enduring end of life choice”.
For that reason, there has been quite a significant awareness that practitioners should be able to bring up voluntary assisted dying with the patient as part of that suite of end-of-life choices. That has been something that the evidence has suggested is very important, because if the practitioners are feeling that they cannot raise it in that context, that is having a detrimental effect on the patients who would like information on it. That has been our experience in Western Australia.
Terminally Ill Adults (End of Life) Bill (Third sitting)
Naz Shah ExcerptsTuesday 28th January 2025
(1 month, 1 week ago)
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The Chair
Members should indicate if they wish to ask a question and who they wish to ask.
Naz Shah (Bradford West) (Lab)
Q
James Sanderson: There are clearly gaps in the provision of palliative care. However, to start with a positive, I think that the provision of palliative care in this country is exceptional. We are leaders in many ways across the world in the way in which we support people who are facing those challenges in their lives. However, our findings in relation to palliative care show that, although about 90% of the population could benefit from palliative care, only 50% of people are currently able to access it.
One of our concerns is that the provision of palliative care across the country is quite patchy at the moment. I do not think there has been a thorough assessment of the level of palliative care in place—not just the provision of palliative care specifically, but how other services, such as district nursing services, interact with palliative care. In some areas, the provision of district nursing services for general care and support for people who may be at the end of their life is very strong and in other areas it is not so strong.
At Sue Ryder, there is one thing that we are really concerned about. In our survey, 77% of respondents said that they were concerned that the lack of availability of palliative care might enable more people to consider an assisted death than otherwise would. That concern went up to 84% for those who were in favour of assisted dying. We really need to look at the provision of palliative care and the specifics in the Bill that make reference to the fact that people should be offered what is available to them. We need to have a much clearer definition of what “available” means.
Naz Shah
Q
“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.
Sean Woodcock (Banbury) (Lab)
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.
The Chair
Q
Sir Max Hill: Good afternoon. I am not sure how much by way of introduction you want, so please stop me. I was the UK independent reviewer of terrorism legislation 2017-18, and the director of public prosecutions 2018 to 2023—so I stopped 15 months ago. I am not a campaigner; I am here to bring any experience of criminal casework that I may have picked up along the way, as that was part of my diet as DPP. I have been quite close to the construction of the Bill, and I am happy to deal with any questions that I can.
Sir Nicholas Mostyn: I am Nicholas Mostyn, and I was a judge of the High Court family division, of the Court of Protection and of the administrative court until 2023, when I retired with the onset of Parkinson’s disease—which is a genuine slippery slope, unfortunately. I am now a podcaster and devoting myself to alleviating the hardships of people living with Parkinson’s.
Alex Ruck Keene: I am Alex Ruck Keene. I am a barrister in independent practice, and I need to emphasise that I am giving my evidence as a self-employed barrister, not on behalf of any organisation I am associated with. You will have seen from my written evidence that I am associated with quite a few different organisations, because my practice and career straddles both advising and appearing in court cases involving mental capacity. I teach law on the end of life as a professor of practice at King’s College London. I am also heavily involved in law reform in different ways; for instance, I was the legal adviser to the Independent Review of the Mental Health Act 1983. I also do an awful lot of training in the context of mental capacity of both healthcare and social care professionals.
Naz Shah
Q
Sir Max Hill: If the problem is anybody in future going on their own or accompanied by their loved ones to Dignitas, the answer is no—this Bill does not satisfy that. What we have learned from other jurisdictions around the world, where we see broader or multiple groups beyond the terminally ill who are entitled to use new legislation, has not been the model for this legislation, unless you and Parliament were to dramatically change it. The nuanced answer to your question is that this Bill does provide an opportunity for those in the category of being terminally ill, as defined in the Bill, to no longer have to resort, on their own or supported by loved ones, to going to Dignitas. So, yes, it can and will make a positive difference.
I should add, in answering this question, that my often-quoted personal experience is that 27 cases investigated as assisted suicide came across my own desk as the DPP —five to six cases a year. A substantial proportion of those cases did involve Dignitas, because an accompanying relative who had returned alone was then investigated, but a proportion did not involve Dignitas at all, because there had been deaths at home. Of all those 27 cases, I made the decision to prosecute in only one, which was the case of an individual who was 19 years of age encouraging another teenager to end their life. That was a correct and successful prosecution.
I will also add—because until 15 months ago I was a prosecutor, and prosecutors look to bring criminal cases whenever the law is broken—that there was an additional handful of cases in which, although I was not making the personal decision, I supported authorisation of charges for murder or manslaughter where it was clear that an individual’s life had been brought to an end not at the time of their choosing. It is perhaps important to remember that this Bill, as and when passed—that is a matter for Parliament—would not truncate the homicide jurisdiction in this country. It will still be possible to prosecute for murder in those cases when one would expect to be prosecuted for murder. I think it is important to say that, as a very recent former prosecutor.
Naz Shah
Q
Sir Max Hill: That small handful of cases involved an elderly couple where either he—it was usually a he—or she had chosen to bring to an end the life of their lifelong partner and, once that act had been carried out, claimed that it was an assisted suicide in circumstances where the surviving partner was merely carrying out the wish of the person now dead. There are a handful of cases in which that is clearly wrong and should not be accepted and where murder should be the offence brought before the court.
The point, though, is that throughout the time that I served as DPP—and, indeed, the time served by all my predecessors—we did not have the coercion offences created by the Bill, which I suggest would be a significant advance, and nor did we have a legal system in which the investigation was taking place before the death. It was the other way around. In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill, if I can put it that way, is that that will be reversed, and scrutiny will be before death. In the case of coercion, where it fits the new potential clauses, prosecutions can—and, I am sure, will—be brought.
Dr Tidball
Q
Sir Max Hill: I think that coercion and the coercion clauses in the Bill should be read alongside the capacity clauses. What we are looking for, as required by clause 1(1) and clause 1(2), is a clear, settled and informed wish, voluntarily made without coercion or pressure. Those aspects were taken, at least in part, from the Crown Prosecution Service guidance on 1961 Act cases. Capacity involves understanding information, retaining it, using it and communicating it. If those hallmarks are not there, you may be in a situation where you should be considering coercion. I think you read the two together.
To answer your question directly, the criminal liability clauses—clause 24, and the new offences in clauses 26 and 27—are robust. As a matter for your scrutiny, they are aspects that we do not have in the law at present. There is, of course, the addition of clause 36, under which you cannot be a witness or a proxy to the procedure that is enshrined in the Bill if you are too close to the terminally ill person. That is another hallmark of the Bill that will hedge against coercion.
Danny Kruger
Q
Dr Kaan: You characterised it correctly in that I think that for people who have capacity, and who are making the decision to have this as an option, a part of their reasoning is that they want to save their family from an onerous caregiving experience. I think that is their right and it is part of their value system.
Of course, if that is the only reason, we are going to be exploring that. As Dr Spielvogel has said, that is a red flag. We are going to be exploring that, and exploring whether acceptable alternatives exist and what are the resources that the person may not be aware of. That is always part of the discussion. These discussions are always broad and multifactorial. But I think it is appropriate and okay for somebody to say, “I do not want my family to experience what I myself had to experience when I was caregiving for my elderly parents with dementia.” I have heard that many, many times. I do think people who have capacity should have their autonomy respected, in terms of the values that are driving them to make this decision.
We always want to work towards improving the social support for caregiving that exists in our society. There is certainly a lack of it here in the US, and probably there in the UK as well. Hand in hand with allowing people to make an informed decision about the option of having an assisted death, you should also be a strong advocate for social support and caregiving services at the end of life, because those really are important and needed.
Naz Shah
Q
Dr Spielvogel: That is a good question. I do not know the specific status of the Bill, but I would assume that it has itself undergone an assisted death at this point. That Bill is not really being supported by any of our advocacy groups or, by and large, the physicians who perform assisted dying, because it is, as you mentioned, very broad and not aligned with how we feel standard practice is going and where we would want it to go. That Bill did not receive support from many of us.
Naz Shah
Q
Dr Spielvogel: Can you clarify what you mean about kidney disease and the six-month prognosis, and the interplay with insurance there?
Naz Shah
Q
Dr Spielvogel: That is not factually accurate. When people go on dialysis, they automatically get Medicare, which is our version of the NHS, more or less. That is a national health insurance for people who are 65 and older or who have certain kinds of diseases. When you have end-stage kidney disease and you need dialysis, you automatically get Medicare and you get dialysis for the rest of your life, however long that is. People are often on dialysis for years. It is not that you are on it for six months and then you are off.
Naz Shah
Q
Dr Spielvogel: If you have a six-month prognosis to live, regardless of the condition, that would fall under this. That would make you eligible. That has nothing to do with insurance coverage for your condition. Insurance coverage is completely separate. It is not tied to this. All that prognosis does is to allow the individual to seek this care.
Naz Shah
Q
Dr Spielvogel: No. Insurance does not run out. There is maybe a misunderstanding of how medical insurance works in the US. Medical insurance does not run out. I think we are talking about two different things.
Naz Shah
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.
Sean Woodcock
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.
Kim Leadbeater
I beg to move amendment (a), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after Mencap (Thursday 30 January, until no later than 5.00 pm), leave out “Representative of Senedd Cymru” and insert—
“Professor Emyr Lewis (Emeritus Professor, Department of Law and Criminology, University of Aberystwyth), Royal College of General Practitioners, Royal College of Psychiatrists.”
These amendments allow additional witnesses to be called to give oral evidence, including representatives from Disability Rights UK, the Royal College of General Practitioners, the Royal College of Psychiatrists, and an expert in Welsh devolution and constitutional matters.
As the sessions today have shown, hearing from expert witnesses is an extremely important part of this process, so I hope I have the support of the Committee in making these additions. On the motion to call additional witnesses tabled by my hon. Friend the Member for Bradford West, I respect the suggestion but I am confident that we have an eminently qualified witness to cover issues of coercion and domestic abuse in Professor Jane Monckton-Smith, who was suggested by my hon. Friend.
We have also heard today—and will hear from many witnesses over the next few days—from medical doctors, social workers, nurses, palliative care experts and geriatricians. That is around 50 witnesses in total. While I fully appreciate that a wide range of additional charities and organisations has valuable contributions to make, I would encourage them to submit written evidence so that the Committee has the benefit of their thoughts.
Regarding the start of the line-by-line scrutiny of the Bill, given the huge volume of evidence—both oral and written—that we have received and are still receiving, I have consulted with colleagues across the Committee and there is a consensus that having next week to absorb and evaluate the evidence, and to prepare any amendments in light of it, is extremely important. Consequently, we would begin line-by-line scrutiny on Tuesday 11 February, as per the amendment.
I hope that these amendments demonstrate the robust approach that the Committee and I are taking to our work, and I encourage colleagues to support them.
Naz Shah
I beg to move an amendment to amendment (a), at end insert—
“Richard Robinson, CEO of Hourglass, Cherry Henry-Leach of STADA, Standing Together Against Domestic Abuse ”.
I completely agree with my hon. Friend the Member for Spen Valley and I am grateful to her for adding Professor Jane Monckton-Smith to the witness list. I also absolutely agree that the evidence we receive is really valuable.
This is an amendment tabled yesterday by the Mother of the House, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott) yesterday, to which I have added my name.
The reason for the amendment is that Hourglass focuses on domestic abuse of older people and it has particularly noted that the majority of such victims are female. Hourglass estimates that one in six elderly people are victims of coercion in the UK. This raises serious concerns that such people could be pushed into ending their lives if the Bill is enacted. Hourglass has not published a public opinion on the Bill.
Standing Together Against Domestic Abuse has said that
“We must echo concerns raised by the VAWG sector”—
the violence against women and girls sector—
“and disability activists about the bill’s current safeguards. There is insufficient clarity on what constitutes coercion and limited reflection on carer capacity to support someone terminally ill. Without robust measures, there is a real risk that assisted dying could be exploited as a tool for coercion or even femicide.
Statistics show that over 88% of unlawful ‘mercy killings’ are perpetrated by men towards women, often involving violent means. These troubling realities demand urgent consideration in shaping this legislation.
We also highlight the health sector’s role in identifying domestic abuse. With 80% of victim-survivors having their first or only point of contact in healthcare, it is critical that health professionals are equipped to identify and respond to abuse.
We call on the Government to ensure the proposed bill includes stringent safeguards and that healthcare systems are equipped to recognise and prevent the potential misuse of assisted dying. Femicide is already a crisis in the UK, and no law should inadvertently contribute to its escalation.”
All my adult life, I have had experience of dealing with domestic abuse and coercion, and I draw on that experience to speak to these amendments. Although Professor Jane Monckton-Smith is an expert, she is an academic. These two organisations work with people who have been victims of abuse.
In addition, we had an official meeting with the Clerk to discuss the proposals for Committee sittings. It was said at that meeting that we would only have witnesses who would give evidence, particularly in person, that would contribute to the deliverability and the workability of the Bill. Since then, we have had families added to the list of witnesses. That adds weight to the argument that we should have witnesses who are providing a service to victims directly.
Dr Tidball
I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.
I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.
Lewis Atkinson
I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.
Naz Shah
There is nothing in my amendment that suggests Professor Monckton-Smith is not capable in her expertise. I am asking for other expertise to be brought to the table. Yes, there is the argument that people can submit written evidence—but so could every witness we have heard from today, and that we will hear from tomorrow and the day after. If that is the yardstick, is this just a tokenistic exercise? I would argue that for women in particular, who are the victims of domestic abuse—
Dr Tidball
I note that Laura Hoyano, who is giving evidence on Thursday, is a domestic abuse barrister. She has also been involved in inquiries on child sexual abuse, and has a great range of experience in that area. She will bring that to the table as a practising barrister working closely on such cases.
Naz Shah
I welcome my hon. Friend’s intervention and I recognise Laura Hoyano’s expertise. I would respectfully push back that, as a victim of domestic violence—as a person who has experienced it and campaigned on it for all my adult life—there is a difference between an academic who has studied it and people who have worked with victims, in particular elderly women. The expert is a barrister with experience of young people and children and domestic abuse, and Professor Monckton-Smith is also an academic—yes, she has been a police officer—but I would value a witness who has worked with victims of domestic abuse. That is all I have to say on it.
Question put, That the amendment be made.
Question negatived.
Main Question put and agreed to.
Amendments made: (b), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after
“Professor Aneez Esmail (University of Manchester)”
insert “Disability Rights UK”.
Amendment (c), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after
“Dr Lewis Graham (University of Cambridge),”
leave out “John Kirkpatrick” and insert “Baroness Falkner”.
Amendment (d), in paragraph (2) of the sittings motion agreed by the Committee on 21 January 2025, after “Wednesdays” insert
“starting on 11 February 2025”.—(Kim Leadbeater.)
Ordered, That further consideration be now adjourned. —(Kit Malthouse.)
5.30 pm
Adjourned till Wednesday 29 January at twenty-five minutes past Nine o’clock.
Written evidence reported to the House
TIAB 01 Ben Scott
TIAB 02 Michael Vidal
TIAB 03 Compassion in Care
TIAB 03(a) Compassion in Care (further evidence)
TIAB 04 Dr George Gillett, an NHS doctor and psychiatrist
TIAB 05 Dr Stephen Hutchison MD
TIAB 06 Dr Andrew Boorne
TIAB 07 Jess Carrington, Registered Social Worker and Best Interests Assessor
TIAB 08 Greg Lawton MPharm MRPharmS FFRPS MBCS LLM, Barrister and Pharmacist
TIAB 09 Australian Care Alliance
TIAB 10 Dr Peter Knight
TIAB 11 Dr Isky Gordon FRCR, FRCP, Emeritus Professor Paediatric Imaging, UCL, London
TIAB 12 Dr Peter O’Halloran, RN, PhD, Registered Nurse, Senior Lecturer, Queen’s University Belfast, Researcher in chronic illness, palliative and end-of-life care
TIAB 13 Rose
TIAB 14 Dr Rachel Fisher
TIAB 15 Nigel Andrew Gordon Jones, a retired Consultant General Surgeon
TIAB 16 St Gemma’s Hospice
TIAB 17 Sir Nicholas Mostyn
TIAB 18 Leah Locke
TIAB 19 Alison Taylor
TIAB 20 Dr Katharine Crossland
TIAB 21 John Forrester
TIAB 22 Don Stickland
TIAB 23 Christina Blandford-Beards
TIAB 24 Society for the Protection of Unborn Children (SPUC)
TIAB 25 Catholic Bishops’ Conference of England and Wales
TIAB 26 British Association of Social Workers
TIAB 27 Plunkett Centre for Ethics: A centre of Australian Catholic University located at St Vincent’s Hospital Sydney
TIAB 28 Dame Sarah Mullally, Bishop of London, Lead Bishop on Health and Social Care for the Church of England and former Chief Nursing Officer for England on behalf of the Bishops of the Church of England and the Archbishops’ Council
TIAB 29 Cicely Saunders International
TIAB 30 Lejeune Clinic for Children with Down Syndrome
TIAB 31 Voice for Justice UK
TIAB 32 Get on Downs - a Down Syndrome Support Group
TIAB 33 British Medical Association (BMA)
TIAB 34 Portsmouth Down Syndrome Association
TIAB 35 Better Way campaign
TIAB 36 Hospice UK
TIAB 37 Association of Catholic Nurses for England and Wales
TIAB 38 East Midlands Palliative Medicine Consultants and Specialty Doctors
TIAB 39 Marie Curie Palliative Care Research Department, University College London (UCL)
TIAB 40 Humanists UK
TIAB 41 Nuffield Council on Bioethics’ (NCOB)
TIAB 42 Marie Curie
TIAB 43 LOROS, the Leicestershire and Rutland Hospice
TIAB 44 Professor Emeritus Sam H Ahmedzai
TIAB 45 Professor Nancy Preston, Professor of the International Observatory on End of Life Care, Lancaster University; and Professor Suzanne Ost, Law School, Lancaster University
TIAB 46 Professor Alex Ruck Keene KC (Hon)
TIAB 47 Anureg Deb and Dr Lewis Graham
TIAB 48 Australian Centre for Health Law Research, Queensland University of Technology, Australia
TIAB 49 The Bios Centre
TIAB 50 The Orders of St John Care Trust
TIAB 51 Living and Dying Well
TIAB 52 Professor Katherine Sleeman, King’s College London
TIAB 53 British Islamic Medical Association (BIMA)
TIAB 54 Joint written evidence submitted by Chelsea Roff (Eat Breathe Thrive, UK), Dr Angela Guarda (Johns Hopkins University School of Medicine, US), Dr Philip Mehler (University of Colorado School of Medicine, US), Dr Patricia Westmoreland (University of Colorado, US), Dr Scott Crow (University of Minnesota, US), Dr Catherine Cook-Cottone (University at Buffalo, SUNY, US), Dr Anita Federici (York University, Canada), and Dr Agnes Ayton (Oxford Health NHS Foundation Trust, UK)
TIAB 55 Professor Allan House
TIAB 56 National Care Forum (NCF)
TIAB 57 AtaLoss
TIAB 58 Compton Care
TIAB 59 Dr Odette Spruijt, Medical Director, Launceston Specialist Palliative Care Service
TIAB 60 Rachel Pegrum, Independent Social Worker
TIAB 61 Abdul Rahman Badran
TIAB 62 Alan Thomas, Professor of Old Age Psychiatry, Director of Brains for Dementia Research, Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University
TIAB 63 Dr Julian Neal
TIAB 64 Dr Raymond Towey
TIAB 65 Multiple System Atrophy Trust
TIAB 66 Dr Adrian Tookman
TIAB 67 Royal College of Psychiatrists
TIAB 68 UK Medical Freedom Alliance
TIAB 69 Association of Anaesthetists
TIAB 70 Catholic Union of Great Britain
TIAB 71 My Death, My Decision
TIAB 72 Health Advisory and Recovery Team (HART)
TIAB 73 Kyam Maher MLC, the Attorney-General of South Australia, in his capacity as a member of the Legislative Council of South Australia
TIAB 74 Dr Calum MacKellar, Director of Research, Scottish Council on Human Bioethics
TIAB 75 Christian Medical Fellowship
TIAB 76 Christian Medical and Dental Association of Canada
TIAB 77 Christian Legal Centre
TIAB 78 Written evidence submitted on behalf of a group of anorexia nervosa sufferers and carers
TIAB 79 Dr Angelika Reichstein, Associate Professor in Law, University of East Anglia
TIAB 80 Dr David Randall
TIAB 81 Cruse Bereavement Support
TIAB 82 Compassion in Dying
TIAB 83 General Medical Council (GMC)
TIAB 84 Pathfinders Neuromuscular Alliance
TIAB 85 Royal Pharmaceutical Society
TIAB 86 Motor Neurone Disease Association
TIAB 87 Dr Simon Eyre
TIAB 88 Macdonald Amaran
TIAB 89 Patrick Pullicino
TIAB 90 Luis Espericueta, Researcher and lecturer in bioethics at the University of Granada, Spain
TIAB 91 Healthcare Professionals for Assisted Dying
TIAB 92 PSP Association (PSPA)
TIAB 93 Association for Palliative Medicine of Great Britain and Ireland (APM)
TIAB 94 Academy of Medical Royal College's
TIAB 95 Care Not Killing
TIAB 96 Dr Alexandra Mullock, Senior Lecturer in Law
TIAB 97 Rt Hon. Sir Stephen Sedley
TIAB 98 Carole O’Reilly
TIAB 99 Dr Hannah Denno
TIAB 100 Prof B Anthony Bell MD, Neurosurgeon, University of London
TIAB 101 Matthew Hoyle, Barrister
TIAB 102 Royal College of Nursing
Terminally Ill Adults (End of Life) Bill (Second sitting)
Naz Shah ExcerptsTuesday 28th January 2025
(1 month, 1 week ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 28 January 2025 - (28 Jan 2025)
The Chair
We are now sitting in public and the proceedings are being broadcast. Before we begin, I remind Members to switch electronic devices off or to silent. Tea and coffee are not allowed during sittings. Before we start hearing from the witnesses, do any Members wish to make declarations of interest in connection with the Bill? No.
We will now hear oral evidence from Professor Sir Chris Whitty, chief medical officer for England, and Duncan Barton, chief nursing officer for England, NHS England. Before calling the first Member to ask a question, I remind Members that questions should be limited to matters within the scope of the Bill. I also remind Members that time is tight, so please keep your questions to the point. We must stick to the timings in the sittings resolution that the Committee has already agreed. For this session, we have until 10.05 am. Will the witnesses please briefly introduce themselves for the record? If you are to give an opening statement, please keep it short.
Professor Whitty: I am Chris Whitty, the chief medical officer for England, and I am also representing the chief medical officer for Wales. One statement, which is on behalf of Duncan and myself, and all the CMOs, is that we are completely neutral on the principles of the Bill, which we consider are entirely for society and therefore for Parliament. Although we are answering technical questions, we will not be answering questions of principle, because we feel that is a societal question. We have made it clear to the medical profession, however, that individual doctors should be able to make whatever statements they wish. Obviously, doctors have strong views on all sides of this argument, as members of society do.
Duncan Burton: Good morning. I am Duncan Burton, the chief nursing officer for England. For transparency, I will say that I am also a volunteer trustee of a hospice.
Naz Shah (Bradford West) (Lab)
Q
“But if any provision of this Act has not been fully brought into force before the end of the period of 2 years beginning with the day on which this Act is passed, that provision (so far as not already in force) comes into force at the end of that period.”
My question is: do you believe that it would be safe to implement this legislation if those provisions had not been fully put in place?
Professor Whitty: If this Bill is passed—I want to stress that; I will say it once, but assume it applies for all the answers I subsequently give—we will clearly need both: a period to make sure that there is technical guidance and legislation, via secondary legislation, because obviously the primary legislation is the Bill; and necessary training for people to be able to do this in an appropriate and dignified way, if that is what Parliament chooses.
Naz Shah
Q
Professor Whitty: That is an absolutely critical question, because it is very important that if the Bill is passed, all parts of society, of whatever ethnicity and of whatever background, have equal access to the Bill—or not, as Parliament determines. That will require adjustment in a variety of ways. Some can be done at a macro level—for example, making sure that everything is translated into the major languages spoken in the United Kingdom—but a lot of it will be to do with the individual interactions that doctors, nurses and other healthcare providers have with individual patients, which must take into account their own starting point, their own knowledge and, most importantly, their own beliefs.
Lewis Atkinson (Sunderland Central) (Lab)
Q
Professor Whitty: I will give my view, and it might be useful to get Duncan’s view on the nursing side, because nurses will often be heavily involved in these discussions.
I would divide the kind of training that is needed into two broad groups: training that is essentially normal medical practice but may need some variation, and things that are clearly specific to this Bill. Issues, for example, around mental capacity—as determined by the Mental Capacity Act 2005—are dealt with every day, in every hospital up and down the country; every doctor and nurse above a certain level of seniority should be able to do that normally. It may require some slight adjustment. There is an absolute expectation within the Act, for example, that the more serious the decision, the greater the level of capacity that someone needs to have. That is already built into the principles of the Act and the way that things are done. I would extend that to the management of end of life, which should be a normal part of medical and nursing practice—we will all die eventually, and that has always been part of medicine, and always should be. That training should be generic, but may need some adaption.
There will then be some specific things that will be necessary for people to understand the legislation, including, in some cases—if this Bill is passed—if they are to take part in the final part of prescribing drugs to patients. It is much more likely that a very large number of doctors and nurses may get involved in the very earliest stages, because someone may raise an issue with their GP, nurse or consultant, who will need to have the basic understanding for that. In my view, the more detailed later stages will require some specific training. I think there will be a gradation of doctors: those who are happy to have the general, initial conversation; those who are happy to have the structured conversation that follows; and a minority who will be happy to go on to take part in the final stages.
It is very important that the wishes of the patient are respected. That is the central point of this. We must start with what is good for someone in their last six months of life, and for their immediate family, but we must also make sure that the wishes of healthcare professionals around this area are absolutely protected, when it comes to conscience and to choice.
Duncan Burton: I am mindful that there are two groups of staff who would potentially be working in this service, if the Bill is passed, but also of the wider workforce. At 2 o’clock in the morning, when a patient wants to have a conversation with somebody about end of life, it is going to be a nurse with them, or a nurse in a care home, or a specialist nurse providing cancer care, so we have to think about the training and support that is required for them, be that around signposting or explaining where they can go to access more information. There is an important part about the entire wider workforce that we need to think about.
Clearly, for those people who are working in such a service, we need to think about the safeguarding elements, and how we make sure there is support through safeguarding training and confidentiality—particularly mindful that some patients may choose not to tell their families about this. We need to think about how we enable and support staff in managing those kinds of circumstances and navigating the legal requirements through the Bill. We need to think ahead about what we need to do in undergraduate training for doctors and nurses, and in the curriculum.
Lewis Atkinson
Q
Dr Green: I am reluctant to make a statement on that in this forum. We will go away and discuss it, and come back to you.
Naz Shah
Q
The question that worries me is, to be able to fulfil all those actions in all cases, without fear of mis-determining, the two doctors would have to be specialists in all the relevant diseases. For example, if somebody has a brain tumour, lung cancer, or a different type of cancer, would the doctor have to be an expert in that to determine that the person is terminally ill?
From the GMC’s point of view, would we find ourselves in a situation where doctors are working outside their professional competencies and expertise? From the BMA’s point of view, how do we protect doctors from finding themselves having to diagnose life expectancy for a disease they are not a specialist in, or to determine capacity when they are not a specialist in that, or to determine a lack of coercion when they potentially do not know the patient and do not have experience of that? Finally, when the next step is taken and the court has to rely on the testimony of these doctors to protect the patient, can those testimonies safely be relied on by a court and by a judge, given all those concerns?
Mark Swindells: There are quite a few points there—let me work through them backwards. We have some existing guidance for doctors when they act as a witness—for example, in a court setting or a medical legal situation—that talks in general terms about the importance of being an appropriate witness. Inherent to that is some expertise and understanding of the topic they are assisting the court on. I suppose that those sorts of principles would be ones that, if the Bill is passed in this form—I say again, the GMC does not have a view on what the delivery mechanism or the Bill should look like—are applicable points from the guidance, which would read across.
You heard from the chief medical officer his caution with regards to going with a condition-based assessment for this sort of thing. We would not have a particular view on that, but there is one thing that I want to highlight. The Bill talks about specialism in the context and seeking advice from a psychiatrist. On the specialist register held by the GMC, there are five specialisms connected with psychiatry, so some clarity—whether the Bill is intended to cover any, or a particular one, of those—would be good.
I know that it is not restricted in the “independent doctor” and “coordinating doctor” roles in the Bill either, but we are aware that when doctors pursue a specialty, in the sense that they become accredited and go on to our specialist register, that does not fix in time their individual scope of practice or expertise. Many doctors will go into slightly different fields, or focus on one particular area, so one cannot necessarily rely on the specialist register as a current indication of a doctor’s area of competence in that way. On what the precise delivery mechanism is and the point you make about whether either of those two roles of doctor have seen the person, because we have not taken a view on what the law should be, we have not taken a firm view of any process or eligibility, but I note the point.
Dr Green: If I may, I will clarify my previous answer, having had a little more thought. I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process. My internal thoughts on whether it should be on the face of the Bill, contained in guidance or contained in good medical practice was the point that I was unsure about.
Lewis Atkinson
indicated assent.
Dr Green: With regard to the specific questions, no, I do not believe that a doctor has to be a specialist in the individual disease at stake to advise a patient about prognosis. I can only refer you back to what Dr Whitty said: that in the majority of cases, it is fairly clear—this applies to capacity, too—but in some cases, it is not so clear. What is important is that the doctor has the ability to seek further advice if they need it; it is not always required.
Terminally Ill Adults (End of Life) Bill (First sitting)
Naz Shah ExcerptsTuesday 21st January 2025
(1 month, 2 weeks 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 21 January 2025 - (21 Jan 2025)
Kit Malthouse
I was going to make exactly the same point. I think my hon. Friend the Member for East Wiltshire has fundamentally misunderstood what is happening. He referred to there being a discussion through the usual channels. What the hon. Member for Spen Valley has proposed is that we have that discussion now—she said informally—because we have not had the chance to do so before, and that we then return. Then my hon. Friend is free to say whatever he likes about whatever witnesses and table his own amendments as he wishes. There is no intention to conceal anything. If I might be so bold, I think he has misunderstood the process.
Naz Shah (Bradford West) (Lab)
Just 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.
Kim Leadbeater
I beg to move, Date Time Witness Tuesday 28 January Until no later than 10.05 am Sir Chris Whitty (Chief Medical Officer for England), Duncan Burton (Chief Nursing Officer) Tuesday 28 January Until no later than 10.45 am The British Medical Association, The General Medical Council Tuesday 28 January Until no later than 11.25 am Association of Palliative Care Social Workers, Royal College of Nursing Tuesday 28 January Until no later than 3.15 pm Dr Rachel Clark, Dr Sam Ahmedzai (Emeritus Professor at the University of Sheffield), Sue Ryder, Association of Palliative Medicine Tuesday 28 January Until no later than 4.15 pm Sir Max Hill KC, Alex Ruck Keene KC (Hon), Sir Nicholas Mostyn Tuesday 28 January Until no later than 5.00 pm Dr Ryan Spielvogel (Senior Medical Director for Aid in Dying Services, Sutter Health, USA), Dr Jessica Kaan (Medical Director, End of Life Washington) Wednesday 29 January Until no later than 10.25 am Dr Greg Mewett (Specialist Palliative Care Physician, Australia), Dr Clare Fellingham (Deputy Director of Medical Services, Royal Perth Hospital, Australia), Dr Cam McLaren (Oncologise, Australia and New Zealand) Wednesday 30 January Until no later than 11.25 am Professor Tom Shakespeare CBE FBA (London School of Hygiene and Tropical Medicine), Dr Miro Griffiths (University of Leeds), Yogi Amin (Partner, Irwin Mitchell), Chelsea Roff (Eat Breathe Thrive) Wednesday 30 January Until no later than 3.00 pm Professor Jane Monckton-Smith OBE (University of Gloucestershire), Dr Alexandra Mullock (University of Manchester), Professor Allan House (University of Leeds), Professor Aneez Esmail (University of Manchester) Wednesday 29 January Until no later than 4.00 pm Dr Lewis Graham (University of Cambridge), John Kirkpatrick (EHRC), Lord Sumption Wednesday 29 January Until no later than 5.00 pm Hospice UK, Dr Jamilla Hussain (Bradford Teaching Hospitals NHS Trust and Hull York Medical School), Dr Jane Neerkin (Consultant Physician in Palliative Medicine), Marie Curie Thursday 30 January Until no later than 12.30 pm Dr Chloe Furst (Geriatrician and Palliative Care Physician, Adelaide), Alex Greenwich MP (MP for Sydney, Parliament of New South Wales), Professor Meredith Blake (University of Western Australia) Thursday 30 January Until no later than 2.00 pm Dr Amanda Ward, Professor Gareth Owen (Kings College London and South London and Maudsley NHS Trust), Professor Laura Hoyano (Professor of Law, Oxford University and Red Lion Chambers) Thursday 30 January Until no later than 3.00 pm Professor Nancy Preston (Lancaster University), Dr Naomi Richards (University of Glasgow), Claire Williams (Head of Pharmacovigilance and Regulatory Services, North West eHealth DipHE Adult Nursing, MSc Pharmacovigilance, and Chair, Greater Manchester Central Research Ethics Committee) Thursday 30 January Until no later than 4.00 pm People and families of those with relevant experience Thursday 30 January Until no later than 5.00pm Mencap, Representative of Senedd Cymru
That—
(1) the Committee shall (in addition to its first meeting at 2.00 pm on Tuesday 21 January) meet—
(a) at 9.25 am and 2.00 pm on Tuesday 28 January;
(b) at 9.25 am and 2.00 pm on Wednesday 29 January;
(c) at 11.30 am and 1.00 pm on Thursday 30 January.
(2) during further proceedings on the Terminally Ill Adults (End of Life) Bill, the Committee do meet on Tuesdays and Wednesdays while the House is sitting at 9.25 am and 2.00 pm.
(3) the Committee shall hear oral evidence in accordance with the following Table:
The motion incorporates an amendment that would involve an extra hour of oral evidence on Thursday 30 January so that we can hear from a representative of the Senedd, to ensure that we cover Welsh devolution, and—as other members of the Committee have advised—from a representative of Mencap.
The Chair
With this it will be convenient to discuss the following: “Thursday 30 January Until no later than 5.00pm Richard Robinson, CEO of Hourglass, Cherryl Henry-Leach, CEO of STADA, Sarah Mistry, CEO British Geriatrics Society”.
Manuscript amendment (c), after
“Dr Ryan Spielvogel (Senior Medical Director for Aid in Dying Services, Sutter Health, USA)”,
leave out
“Dr Jessica Kaan (Medical Director, End of Life Washington)”
and insert—
“Dr Ramona Coelho (Family Physician in Ontario Canada, founding member of Physicians Together with vulnerable Canadians)”.
Manuscript amendment (d), after
“Dr Miro Griffiths (University of Leeds)”,
leave out
“Yogi Amin (Partner, Irwin Mitchell)”
and insert—
“Ellen Clifford (Co-ordinator, UK Deaf and Disabled People’s Monitoring Coalition. Author and Visiting Research Fellow within the Centre for Applied Philosophy, Politics and Ethics at Brighton)”.
Manuscript amendment (e), after “Lord Sumption” insert “Karon Monaghan KC”.
Manuscript amendment (f), leave out
“Dr Chloe Furst (Geriatrician and Palliative Care Physician, Adelaide), Alex Greenwich MP (MP for Sydney, Parliament of New South Wales), Professor Meredith Blake (University of Western Australia)”
and insert—
“Dr John Daffy, previously head of infectious diseases at St Vincent’s Hospital in Melbourne, Dr Stephen Parnis, previous Vice-President of the Australian Medical Association, Professor Sinead Donnelly, a Consultant Palliative Medicine Professor in New Zealand”.
Manuscript amendment (g), leave out “Dr Amanda Ward” and insert
“Barbara Rich (Barrister) and Dr Philip Murray (University of Cambridge)”.
Manuscript amendment (i), at end of table, insert—
Naz Shah
On amendment (b), given the issue we are considering, I think it is important that the Royal College of Psychiatrists is involved. One thing that is very important to me is the issue of coercion, and the royal college would be able to shed light on that. One of the many reasons advanced for giving the Bill its Second Reading was that we would have further debate, and the royal college would add value to that.
On amendment (c), Dr Ramona Coelho is a physician with well-founded concerns about the operation of the law in Canada. She is a member of the Ontario Medical Assistance in Dying Death Review Committee, and she gave evidence to the Scottish Parliament Committee that considered the Assisted Dying for Terminally Ill Adults (Scotland) Bill.
On amendment (d), Ellen Clifford is co-ordinator of the UK Deaf and Disabled People’s Monitoring Coalition, and she has a key role in advocating for people with disabilities.
Danny Kruger
I want to speak in support of the proposed addition of Ellen Clifford. Last week, she won a High Court case against the previous Government for their consultation on benefits reform, so she is no friend of my party, but she is a powerful advocate on behalf of disabled people, and she represents the deaf and disabled people’s organisations that are so important in informing the Government on the implementation of policy that affects disabled people. I recognise that the hon. Lady has included some representatives of the disabled community, but I suggest that there would be particular value in hearing from Ms Clifford because of her role as the co-ordinator of the monitoring coalition of all these deaf and disabled people’s organisations across the country. She is the best person to advise the Committee on the operation of the Bill.
The Chair
I do not wish to prevent the hon. Lady from speaking to any of the other amendments, because we have grouped them all. She was doing very well. If she works through them, that will tell other Members where she is coming from.
Naz Shah
Thank you, Sir Roger.
By adding Karon Monaghan KC, an eminent equality and human rights law barrister, amendment (e) would add balance among the lawyers in the Committee. I would also like to add James Munby, or someone from His Majesty’s Courts and Tribunals Service, because we need someone who can speak to court capacity issues in relation to the Bill. Professor Katherine Sleeman is a great expert on all these matters.
I am going through the list, and I am unclear what the Australian MP would add. If we remove the other two, there are other pro-AD Australian experts who will speak instead. If we replace those three, who are experts from—
Kim Leadbeater
On a point of order, Sir Roger. My hon. Friend has just mentioned two names that are not in her amendment, and I find that slightly confusing.
The Chair
Order. First, they are not mine. Please remember that you are addressing the Chair.
Secondly, the hon. Member for Bradford West has a list of amendments that she has tabled, to add some people and remove others. Patently, she cannot refer to people who are not on that list. If she works through it name by name, I think we will get to where we need to be.
The Chair
Are we working from the same list? [Interruption.] Order. Continue to work through the list and you will get to where you need to be.
Danny Kruger
I want to make a general point in support of the hon. Lady’s suggestions.
Naz Shah
I apologise. I thank everybody for bearing with me on this one.
Amendment (e) would insert Karon Monaghan KC after Lord Sumption. I have said that I would like her added because of her expertise.
Amendment (f) would insert Dr John Daffy, previously head of infectious disease at St Vincent’s hospital in Melbourne, Dr Stephen Parnis, previous vice-president of the Australian Medical Association, and Professor Sinéad Donnelly, a consultant palliative medical professor in New York. That is what I was speaking to when I was talking about having three people from one country and not having an alternative voice. I think it is really important to have an alternative voice, and I am not sure what added value the MP for Sydney would bring to the debate when we have so many people contributing from countries that are pro and delivering, rather than from those that have concerns.
Amendment (g) would remove Dr Amanda Ward and insert Barbara Rich, barrister, and Dr Philip Murray from the University of Cambridge.
The Chair
I think you have one more. Would you also like to speak to amendment (i)? It is on the other side of the amendment paper, which we nearly all missed.
Let me assist the hon. Lady: she wishes us to insert, at the end of the table in the sittings motion, a new set of witnesses on Thursday 30 January, to give evidence until no later than 5 pm.
Kit Malthouse
I rise to speak to amendment (b) and to the other amendments tabled by the hon. Member for Bradford West. As we discussed in private, I am concerned that the promoter of the Bill, the hon. Member for Spen Valley, has been through an extensive period of trying to collate everybody’s recommendations for the Bill and reach a list that is both manageable within the timeframe and a compromise for all of us on what we would like to see.
The odd adjustment here and there is fine, but we ought to bear in mind that in any one session we need to have sufficient time for people to speak. We have to be careful not to double up because we may or may not think that a particular witness might propose a view with which we are sympathetic, when we already have people who are covering the same subject. On amendment (b), for example, all psychiatrists are regulated by the General Medical Council, as I am sure the hon. Member for Bradford West knows, so effectively the royal college is a doubling up of expertise, which is not necessarily in the interests of time. Similarly, in amendment (c), the hon. Lady is proposing a physician from Canada—
Kit Malthouse
I will just finish, if I may. Our Bill is built on a very different legal framework from Canada’s. Drawing legislative parallels between the two seems like a cul-de-sac, not least because, as the hon. Lady will know, the legal framework in Canada is dictated by the charter of rights and freedoms, effectively a constitution, which has been used there to widen the scope of the law. Canada started from a very different place as well, so I am not totally convinced.
What the hon. Member for Spen Valley has tried to do with the list is to find overseas territories that are analogous to our own and have adopted a model similar to ours. We are therefore trying to learn lessons from the process of debate and legislative procedure that they went through—either to learn from them or to learn from their mistakes. For example, knocking out the Member of Parliament from Australia would be a mistake, not least because Australia has been through a number of iterations with its law. Most of Australia has a bar on doctor initiation of the conversation. The medical profession think that that is a big negative in Australia, as I understand it, so I would like to understand why, politically and in legislation, it was felt that that was needed or helpful, and why it was imposed.
On the other amendments, the hon. Member for Bradford West is making a value judgment about comparative expertise between Amanda Ward and whoever she wants to propose instead—Philip Murray. I do not know why she is making that value judgment, but as far as I can see, the names were properly submitted in the process. The hon. Lady obviously had the chance to submit names during the process. For better or worse, as she may see fit, the hon. Member for Spen Valley has come up with a list that is a compromise. That is not to say that the hon. Member for Bradford West cannot arrange briefings with any of these experts outside the formal process, for Members to attend should they so wish, or that she cannot seek advice from them during the process of the Bill.
My primary concern about the amendments is that we are opening up a whole area of debate where we could all have gone with our suggestions. I would rather stick with the list that we have, because I fear that the hon. Member for Bradford West is doubling up and making value judgments about expertise that are not necessarily warranted.
Kim Leadbeater
I thank colleagues for their time this afternoon. It has been an extremely productive session. I am very proud of the tone of the debate: I think we have done a very good job, as we did on Second Reading, of showing this place in a good light.
I reiterate that there are a range of views in this Bill Committee, in the same way that there are a range of views across the House on this significant and deeply emotive issue. There are a range of views among the witnesses we will hear from, and I spent a huge amount of time ensuring that. Colleagues have given me more than 100 names of people they might like to hear from. I had my own list of people I would like to hear from, and many of them are not on the list of those who will give oral evidence.
I have tried to be extremely balanced, so we will hear from people with a range of views and opinions, but most importantly we will hear from people with expertise. That is the purpose of the Committee: to hear from people who can advise us on the detail of the Bill. We will go through this Bill line by line, and we need to hear from people who can help us to do that. We have some fantastic expertise on the Committee, but for many of us there are areas that we need to learn more about. It is important that the witnesses give us the information to enable us to do that, rather than—as numerous colleagues have said—once again going over the fundamental principles around assisted dying, because we did an excellent job of that on Second Reading.
At the end of our endeavours, we will produce a piece of legislation that will be re-presented to the House, and colleagues will again have the opportunity to vote on it however they see fit. There may be people in this room who vote differently from how they voted on Second Reading; there may be colleagues out there who do likewise, one way or the other.
I am very clear about this Committee’s role, which is to work on the Bill together, collegiately and collaboratively, irrespective of our different views, and re-present it to the House so that the House can continue to do its job. It is not just the Commons; the Lords will also have the opportunity to scrutinise the Bill and table amendments. I have always been open about the fact that this is about us working together. Where the Bill needs to be amended to make it more robust and alleviate people’s concerns, whether that is around coercion or capacity, that is now the Committee’s job. I stand ready to serve and to do that.
We have spent a lot of time this afternoon on this, and quite rightly so. As far as I am concerned, we are now in a position to move forward. I am very happy that we will hear from so many witnesses over several days, and I am happy that I have added more time to that so that we can hear from more witnesses, which I think is important. As colleagues have said, our job now is to get on with this really important piece of work.
Naz Shah
I thank my hon. Friend the Member for Spen Valley, the promoter of this Bill, because she has been very helpful. She has certainly added one of my key witnesses to her list, and I am grateful for that.
I want to respond to some of the points that have been made. One of the biggest issues for me is amendment (b), which would insert “Royal College of Psychiatrists”. My hon. Friend the Member for Ashford made the point that all psychiatrists come under the GMC, but not every member of the GMC is a psychiatrist. That speaks to the issue of coercion, mental health and capacity. That is the expertise that I am looking for in the line-by-line scrutiny of the Bill, and I would really like to hear from the Royal College of Psychiatrists.
I am happy to be guided by you, Sir Roger, because I am new to this process and I have not done a Bill of this nature before, but my only worry with the outside evidence and briefings is that they will not be on the record when we are looking at Hansard and seeing whether they have been taken into account. I would be happy to receive some assurance about that. Yes, we can organise lots of briefings and lots of experts, but does that not defeat the object of having this debate so robustly in the first instance?
The hon. Member for Harrogate and Knaresborough raised the issue of language, and the point about added value. I think that language is correct, because I do want to add value to this debate. I want value added, because it is important for my constituents that when I vote on the Bill on Report, I do so knowing that I have listened to all sides of the debate.
My hon. Friend the Member for Stroud asked whether this is a for-and-against argument. In particular, he said that we do not need to hear from those who are opposed, because we want to strengthen the Bill so that it can go through the House. Although I appreciate the sentiment, I put it to everyone that it is not about getting the Bill through; it is about getting the right information so we can scrutinise whether it is fit to go through the House. For that reason, it is important to hear from those who are opposed. It is naive to think that we only need to hear from people who are in support.
Naz Shah
Sorry—may I just make my point?
I need to know the other side of the argument in order to make a balanced decision. Those who are opposed to the Bill might have very valid concerns, while those who have expertise in support of the Bill might not give me the same arguments. I want to hear a balance. At the moment, I think there is a real discrepancy between the number of people who are for and against the Bill; it is not very close.
I appreciate that my hon. Friend the Member for Spen Valley, the Bill’s promoter, really wants to get this legislation through Parliament. I also value how she has taken part in the debate and been amenable to having discussions both in Committee and in our offices. I have given my reasons for tabling the amendment, and I particularly want the Committee to accept amendment (b), on the Royal College of Psychiatrists; that is my top amendment.
Question put, That the amendment be made.