Terminally Ill Adults (End of Life) Bill (Twelfth sitting)

Naz Shah Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[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.

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[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.

[Naz Shah]

Will the hon. Member give way?

[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.

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[Naz Shah]

rose—

[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—

[The Chair]

Order. This is supposed to be a short intervention.

[Naz Shah]

Sorry, Mr Efford. How can a GP guarantee that all those options have been covered, even in that initial discussion?

[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.

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[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.

[Naz Shah]

The hon. Member mentioned earlier the idea that this is happening in isolation, but it is her Bill that is saying that it will just be two doctors, not a team of medical professionals.

[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.

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The Government remain neutral on the substantive policy questions related to how the law in this area could change. However, I hope those observations on the purpose and effect of the amendments are helpful to Members of the Committee in their consideration.

[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.

[Naz Shah]

I thank the hon. Gentleman for his intervention.

[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.

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[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

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[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]

I rise to speak to amendments 10, 181 and 283. I will start with amendment 10, which is very significant: it would make a small but crucial change to clause 2.

[The Chair]

Order. I think you are speaking to the wrong amendment.

[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.

--- Later in debate ---

[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.

[Naz Shah]

I thank my hon. Friend for clarifying that—that is really helpful. But where does the amendment leave us in terms of disabled people? I am just trying to understand.

[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.

--- Later in debate ---

[Naz Shah]

I appreciate that cancer does come under disability, and that people with cancer can identify as a disabled person, but my initial thought is that that weakens the Bill.

[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.

[Naz Shah]

I wonder whether my hon. Friend the Member for Spen Valley has considered whether she would tighten the clause. Have any options been explored, and what have the Government said about her removal of the Equality Act—

[The Chair]

Order.

Terminally Ill Adults (End of Life) Bill (Tenth sitting)

Naz Shah Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[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.

--- Later in debate ---

[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”.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

[Naz Shah]

I thank the hon. Member for her powerful intervention. She is right: that was the article I mentioned. Reading about such stories does have a profound impact.

[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.

[Naz Shah]

No, I was talking about another hon. Member, not the Minister. We already have laws to protect people from domestic violence, but that does not mean that they necessarily access them.

[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.

[Naz Shah]

I am trying to understand the expertise my hon. Friend is speaking from. Was he a criminal barrister?

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[Juliet Campbell]

rose—

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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 (Eleventh sitting)

Naz Shah Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Danny Kruger]

I am not sure that we are going to satisfy each other on this point. A lot of the evidence that we have heard conclusively asserts that there is a widespread problem of families applying—and I do use these terms fairly interchangeably—undue influence, encouragement and manipulation. Pressure and coercion form a subset of those terms. They are at the sharp end—the more obvious forms of encouragement and manipulation. Those terms exist in law, and this certainly exists in society, as we have heard from Members and witnesses. It feels to me entirely appropriate and consistent with the principles of the Bill that we are trying to ensure that the new law will only be available to people who are acting entirely autonomously, without having been in any way—however subtly—the victims of any sort of undue influence. That is the purpose of these amendments.

[Naz Shah (Bradford West) (Lab)]

Earlier, the hon. Member gave some examples of subtle encouragement or undue influence. If an elderly person has only one living relative, and they could benefit from their will, the encouragement could be so subtle. They could say to their dad or mum, “This an option available for you,” and not necessarily encourage or talk about palliative care. I know that is a conversation we will come to when we discuss later amendments, but this particular point is about people being driven in a certain direction, and that is so subtle.

As a mother to my children, I encourage them to do certain things, because I want to have that control over their behaviour because they are children. It is a normal thing to do. But when it comes to life or death, as a responsible parent it is my job to get them to think like I do or how I want to shape them. I think it is that subtle. Does the hon. Member agree that it is so subtle that sometimes we have to put it into the letter of the law to make sure it is there consciously, as opposed to expecting people subconsciously to understand the words “under coercion”?

[Danny Kruger]

I emphasise that the basis of the Bill, despite what many campaigners might want, is not one of total autonomy. The Bill requires us to have some responsibility towards the applicant, and not simply to say “Do you want it? You can have it.” There are already provisions in the Bill that put an obligation on the assessing doctors and then the judge not so much to conclude that it is in the person’s best interests—I am afraid it does not have that stipulation—but it does seek to insist that they make their own decision.

As the hon. Lady said, many people make a decision and might not even be fully aware themselves that they are the subject of undue influence. They may be being deceived by their loved ones. Their loved ones might be deceiving themselves about the pressure they are putting on them, but let us just talk about a genuine intent to persuade, which does happen. In answer to the question, “Have you been coerced or pressured?”, the patient may say, “No, of course not.” But if they are asked, “Have you been encouraged?”, they might say, “Actually, yes, I have.” That should raise a very significant red flag, and it is absolutely appropriate and sufficient at that point to say, “I’m sorry, but I don’t conclude that this is an autonomous decision.”

To conclude, I refer back to the debate we have been having since the news broke two days ago that there will be an amendment to scrap the judicial stage that is currently in the Bill. If there were a High Court judge sitting at the end of this process, as we were promised and as was understood by the House when it voted on Second Reading—if there were a judge sitting over each individual case, rather than sitting at the head of a national assisted dying commission, and if there were a judge sitting in court reviewing the case properly—there might arguably be no need for the amendment on undue influence.

It is possible, as the Minister explained, that coercion would sufficiently capture the more insidious undue influence and encouragement we are concerned about. It is possible that we could strengthen the definition of coercion through guidance, or through further definition in the Bill. But if we are going to have a panel, and not a court or a judicial process at all, it is even more necessary that we insist on added protection.

--- Later in debate ---

As with the other amendments in the group, there is a risk in introducing additional or overlapping terminology —the right hon. Member for North West Hampshire referred to “embroidering” the legislation with terms such as “unduly influenced” or “manipulated”. As a general principle, and in order to preserve the integrity of the statute book, where a term is not given a statutory definition, it will be understood that Parliament intended the term to have its ordinary meaning. Indeed, that is how the courts will interpret it.

[Naz Shah]

Many of us on the Committee are first-timers. My understanding is that in a normal Government process we would have gone out to consultation. We are talking about coercion and undue influence, and undue influence in particular is not something that does not appear on the statute books in other legislation, as the Minister may recall I said earlier. We would normally go out and consult and speak to charities, particularly domestic violence charities.

As many Members have said throughout the last few days and this morning, we know that terminology changes. We did not previously have the vocabulary of coercion and the words that we have today. When was the last time, for any Bill—apart from in respect of Domestic Violence Act 2021 under the previous Government—that we actually went out to consult people? Given that there is no impact assessment, which we are so desperately missing and which is a huge chunk of this issue, I want to understand how we can be sure, and how the Government can come here and be absolutely sure, that this will work, given that this is a whole new concept.

This is not domestic violence, with which we have some familiarity. We had one Select Committee inquiry in 2015, and my understanding is that it did not produce anything conclusive either to support or not to support the concept of assisted dying. We have not had the debates to tease this out. Other Members may be much more familiar with these concepts, but will the Minister comment on that?

[Sarah Sackman]

To bring it back to the specific debate about the amendments, the terms “coercive” or “coerce” and “pressure” appear in the criminal law and have broad definitions. That is how they have been interpreted by the courts. Others have referred to section 76 of the Serious Crime Act 2015, which created an offence of controlling or coercive behaviour. In that context and the relevant Bill, Parliament chose not to make a specific legislative definition, but the way in which it has been interpreted, in accordance with its natural meaning, has vindicated the proposition that a broad meaning is given to those terms. For example, that offence could include coercive behaviour such as repeatedly putting somebody down, telling them they are worthless, seeking to control their daily routines or isolating them from friends and family to put pressure on them. As my hon. Friend says, we understand those sorts of behaviours in a much broader way in a changing society.

--- Later in debate ---

[Sarah Sackman]

On the hon. Gentleman’s first point, there is no suggestion that we should somehow accept any weaker form of provision in this Bill to protect other parts of the law. Having said that, he would well expect me, as a Government Minister, to be concerned with the integrity of our statute book as a whole.

It is because the Government take a holistic view of how the criminal law and other areas of our law operate and define these concepts, and how they are read across the piece, that we make our contention in respect of these particular provisions, because the terms “coercion” and “pressure” are given their natural meaning and are expansive. In the Government’s settled view, they would be inclusive of the types of behaviour that are described in the amendments before us—namely manipulation, undue pressure and the sort of encouragement that I think, when he keeps coming back to it, the hon. Gentleman is referring to, which is not encouragement in a benign way as might exist between two perfectly supportive family members in a normal conversation, but the sort of encouragement that is intended to lead to coercive ends.

The hon. Gentleman says that pressure is a subset of encouragement; the Government’s view is that coercion and pressure would cover off the other behaviours that are described in the amendments. It is not necessary to include those additional concepts, because it risks sowing confusion that somehow they are not included in the concepts of coercion and pressure.

[Naz Shah]

I want to understand the Minister’s point about multiple words. We have the Digital Markets, Competition and Consumers Act 2024, referring to both coercion and pressure, and undue influence is also included. Those three terms are used in the same Act. Undue influence is also included in multiple additional statutes—over 10, including the Anatomy Act 1984, which is about people leaving their body to medicine for the purposes of tests and so on. Is the Minister saying that those are bad Acts, because they could confuse people? That is the test we are applying.

[Sarah Sackman]

I am certainly not saying that those are bad Acts, and I do not want anyone to quote me as saying that. We could in theory sit here and come up with a whole set of terms that would be descriptive of types of pressure and coercion. We have come up with a number of those, including “undue influence”, “manipulation” and “unduly pressured”. There are other types of behaviour that we might seek to describe. Indeed, if one refers to the Crown Prosecution Service’s guidance in respect of the offence in section 76 of the Serious Crime Act 2015, there are a whole load of descriptors of different types of behaviour. We could name and enumerate all those different types of behaviours, but, in the Government’s view, that is not the best way to create legislation that is workable.

It is the Government’s settled view that the words “coercion” and “pressure” cover off the types of behaviour that Members suggesting these amendments would wish to include. The risk is that such amendments create more confusion and shed more heat than light, if you like. Indeed, there is then the risk that the definition of coercion is narrower than it in fact is under our law as it is understood in our courts and in the body of common law and case law, which has been developed in construing those sorts of terms.

We are still on clause 1, and we have spoken a little about the interplay between clause 1 and later clauses, particularly clause 26, which engages the criminal offence as drafted in the Bill. I want to stress that while the procedural clauses 1, 7, 8 and 12 may use the same language as the criminal offences in clause 26, they are conceptually distinct, as others have noted. Although it is right that a court could be expected to construe legislation as a whole, case law in relation to one provision will not necessarily flow through directly to a later provision.

It may be helpful to illustrate that with the word “encouragement”, which has been raised. As we know, it is an offence to encourage or assist a person to commit suicide. As the hon. Member for Reigate pointed out earlier, it will continue to be so if the Bill is passed, outside of the specific exemption in the Bill. It is generally also an offence to encourage or assist a person to commit any other offence under the Serious Crime Act 2007. Specifically, it is an offence to do an act capable of encouraging or assisting suicide or another offence. The term “encouraged” is not defined in either statute. While it is true to say that section 2A(3) of the Suicide Act—which was added in 2009—clarified that doing an act that is capable of encouraging suicide includes a reference to a person doing so

“by threatening another person or otherwise putting pressure on another person”,

that was intended to be illustrative of the meaning of “encouraged” in that context; it does not serve as a general definition.

Within the Bill, it is important to keep in mind the difference between the procedural requirements—which is what we are discussing in this group—and the criminal offence requirements. Adding words to one provision because they are found in a criminal offence elsewhere risks, in the Government’s view, unintended consequences. Adding “encouragement” to the procedural clauses is perhaps an example of this.

--- Later in debate ---

Division 5

Question accordingly negatived.

Ayes: 8

---

Labour: 5
Conservative: 2
Liberal Democrat: 1

Noes: 15

---

Labour: 10
Liberal Democrat: 2
Conservative: 2
Plaid Cymru: 1

[Naz Shah]

I beg to move amendment 94, in clause 1, page 1, line 20, at end insert

“, and

(c) is acting for their own sake rather than for the benefit of others.”

This amendment requires that a person requesting assistance must be acting for their own sake, not the benefit of others. This amendment reflects the proposed changes in Amendments 95 to 104.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 235, in clause 1, page 1, line 20, at end insert

“, and

(c) is acting for the primary purpose of avoiding physical pain.”

This amendment, along with Amendments 236 to 245, seeks to ensure that the primary motivation of the patient is to avoid physical pain.

Amendment 95, in clause 7, page 4, line 15, at end insert

“, and

(h) is acting for their own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 236, in clause 7, page 4, line 15, at end insert

“, and

(h) is acting for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

Amendment 96, in clause 8, page 4, line 38, at end insert

“, and

(f) is acting for their own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 237, in clause 8, page 4, line 38, at end insert

“, and

(f) is acting for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

Amendment 97, in clause 12, page 8, line 14, at end insert

“, and

(i) is acting for their own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 238, in clause 12, page 8, line 14, at end insert

“, and

(i) is acting for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

Amendment 98, in clause 13, page 9, line 34, at end insert

“, and

(e) is acting for their own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 239, in clause 13, page 9, line 34, at end insert

“, and

(e) is acting for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

Amendment 99, in clause 18, page 12, line 26, at end insert

“, and

(d) is acting for their own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 240, in clause 18, page 12, line 26, at end insert

“, and

(d) is acting for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

Amendment 100, in schedule 1, page 25, line 22, at end insert—

“3A I am doing so for my own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 241, in schedule 1, page 25, line 22, at end insert—

“3A I wish to be provided with assistance to end my own life for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

Amendment 101, in schedule 2, page 27, line 12, at end insert

“, and

(c) the patient is acting for their own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 242, in schedule 2, page 27, line 12, at end insert

“, and

(c) is acting for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

Amendment 102, in schedule 3, page 28, line 10, at end insert

“, and

(c) the patient is acting for their own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 243, in schedule 3, page 28, line 10, at end insert

“, and

(c) is acting for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

Amendment 103, in schedule 4, page 29, line 5, at end insert—

“7A I am doing so for my own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 244, in schedule 4, page 29, line 5, at end insert—

“7A I make this second declaration for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

Amendment 104, in schedule 5, page 30, line 22, at end insert

“, and

(d) the patient is acting for their own sake rather than for the benefit of others.”

This amendment is consequential on Amendment 94.

Amendment 245, in schedule 5, page 30, line 22, at end insert

“, and

(d) the patient is acting for the primary purpose of avoiding physical pain.”

This amendment is consequential on Amendment 235.

[Naz Shah]

I rise to speak to support the amendment in the name of the right hon. Member for Braintree (Mr Cleverly), because I believe there is a need to include it in the Bill to ensure real protections against coercion.

Before I get to the substantive nub of the conversation, I want to understand something that I have just experienced. Again, the Chair might want to guide me and I am happy to take guidance. I am trying to understand this because we are all relatively new to the process, as is the Minister who responded earlier, the hon. and learned Member for Finchley and Golders Green. It appeared to me that the Government had a position on the amendments that were tabled. I recognise that my hon. Friend the Member for Rother Valley has set out that that is how debates happen, but actually, that is not my experience of how amendments are tabled in this House. We have notice of amendments. They are not tabled on the day, apart from manuscript amendments. They are tabled before the House rises, which gives us enough time to respond to those amendments, take advice on them and so on.

[The Chair]

Order. That is not in scope of the Bill. Please stick to the amendment.

[Naz Shah]

But in sticking to the amendment—

[The Chair]

Order. I am not having a conversation. Stick to the amendment. It is out of scope; I have been informed by the Clerk.

[Naz Shah]

Thank you, Mrs Harris. Sticking to the amendment, can I ask whether the Government will have already taken a position on it before I get to the end of my speech? Can they not share that before I make my speech? Is that within the scope of the conversation?

[The Chair]

I would suggest that you contact the Minister directly and ask the question, and perhaps she can give you a written response.

[Naz Shah]

Can I not ask for it now while we are in the debate?

[The Chair]

We are debating this amendment, and we are sticking to this amendment. You moved an amendment —can you please continue to speak to that amendment?

[Naz Shah]

I am happy to debate, Mrs Harris, but I am trying to understand because this is new to me. If I speak to the amendment and the Minister already has a position, I would value knowing that position, because otherwise it feels pointless for me to debate it.

[The Chair]

I have already said that you can talk about the amendment and not anything else. Could you speak to the amendment, or we will move on to the next speaker?

[Naz Shah]

Okay, I am happy to turn back to the amendment.

This issue is far too serious for us to overlook. I do not believe that many people, including medical professionals, are properly trained to recognise coercion or undue influence. To illustrate, I will refer back to my own experiences, like I did yesterday. I have had many unfortunate experiences in my life, but they have certainly prepared me for this space. I was forced into a marriage at the age of 15. I was 12 when I went to Pakistan, and although I was not physically bound or coerced in an overtly aggressive way, I was coerced none the less. I made the decision not for my own sake but for the benefit of others. At the time, I did not think for myself but for the benefit of my extended family members. It was clearly not my choice, and I understand that now. The power of influence from people we often trust and rely on in our everyday lives, especially when seeking their advice, can often lead to life-changing consequences. In the case of the Bill, it would be life-ending consequences.

In my forced marriage, and in those of others, because they do happen up and down the country, we can look back and realise what led us to make decisions that were neither in our best interests nor of our own choosing. Although my marriage occurred when I was under age, many people are coerced into forced marriages even in their late 20s and 30s for the benefit of others. The burden of holding family relations together, making other people happy and seeking approval can push a person into a forced marriage—something they never wanted. In my case, it was about keeping relationships between siblings and extended family intact, and the pressure fell on me, as a 15-year-old child. But me being 15 then is beside the point; the fact is that this happens today.

--- Later in debate ---

[Sean Woodcock]

On the point of people feeling that they are a burden, one moment that stood out in the oral evidence was that, although the Western Australian Government’s own statistics show that 35% of people opting for assisted dying cited being a burden as their reason for doing so, the practitioners who offer assisted dying to people were not aware of this fact. I had to clarify it for them. Is that part of my hon. Friend’s motivation for supporting the amendment?

[Naz Shah]

It is very much in support of that, and I want to tease out what my hon. Friend just said, which is important. One conversation we are having is about being a burden—my hon. Friend referred to the evidence that we heard—but another side to that is that when people feel like a burden, somebody benefits from that. That benefit is what the amendment teases out. That is what I want to understand.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I completely understand where the hon. Lady is coming from, but this is the conflict between someone feeling like a burden because of their own personal choice and autonomy, and how those might impact other people in their surroundings. Does she accept that among the reasons that many people might want to access an assisted death is that they do not want to lose that autonomy? That is not necessarily anything to do with feeling like a burden on other people; it is about their own choice.

--- Later in debate ---

[Naz Shah]

The hon. Member makes a valid point: it could be an absolutely autonomous decision. In an ideal world, that is what we would like to get to, but we are not in an ideal world.

[Sean Woodcock]

I am grateful to my hon. Friend for giving way again, and I am sorry to interrupt her when her speech is in full flow. My response to the hon. Member for Harrogate and Knaresborough, which links to my previous point about Western Australia, is that we have been told throughout this process that clinicians can spot the signs of coercion and whether people feel that they are being manipulated. However, in Western Australia, the people administering assisted dying—who we are trusting, in this Bill, to be able to spot those things—were not aware that 35% of people in the state cited “being a burden” as their reason for going for assisted dying. That is my concern. Does my hon. Friend have a response to that?

[Naz Shah]

My hon. Friend makes a very important point—because if we visit this issue afterwards, that person is dead.

[Dr Opher]

I do believe that what was actually said in evidence was that one of the reasons was that the person felt a burden, but there were other reasons. From the Californian doctors, we heard that feeling a burden is not in itself a reason to approve an assisted dying request.

[Naz Shah]

My hon. Friend is right, but the point I am trying to come back to is to do with those people who feel a burden; wherever they feel a burden, somebody is benefiting from that, because we are taking the burden away—there is ultimately a benefit to somebody.

We have talked a lot about people feeling a burden in terms of potential coercion, potential financial issues and all those things, but we have not discussed this in detail. It is important that we do so if we are to make this Bill, as my hon. Friend the Member for Spen Valley intends, the safest Bill in the world. It is incumbent on us to look at both sides. Just like in the earlier debate about whether we choose assisted dying or choose to take out the plug, ultimately the end is the same—it is death—but they are two different things. The amendment tabled by the right hon. Member for Braintree is very much about the question of who is benefiting from the person taking that decision.

[Dr Shastri-Hurst]

The hon. Lady spoke movingly about her own experiences, which clearly fell into the category of benefiting others, with no benefit for herself. Can she elucidate how she envisages this amendment working in the following scenario? Let us say that in some years to come, this law is enacted and I have a terminal illness—I have six months or less to live—and I do not want to face intolerable pain and suffering in those last moments of life, but I also do not want my son or my wife to watch me suffer. They benefit from that decision, because they do not see me suffering, but I am also doing it for my own sake. How does the amendment fit into that scenario?

[Naz Shah]

The hon. Member makes an important point. That is precisely why we need to have a conversation to ascertain that autonomy, which is what this comes back to—the whole purpose of this Bill is to give people autonomy. It is important that when benefit is being derived, it is not because they are a burden. We need to ascertain that that has been explored and was not about that, but that it is an informed choice and an autonomous decision. That comes back to the conversation around coercion, manipulation or whatever word we want to use; we voted down provisions on the term “undue influence”, but those are the words that apply.

In my understanding, this amendment is about having a conversation to probe what measures will be in place to ascertain what that person is actually saying. I would not wish that experience on the hon. Member, but he could be in that situation, and make that informed choice and be able to demonstrate that—again, we discussed the amendment from my hon. Friend the Member for Broxtowe on the word “demonstrably”. I am very keen to have those conversations, and that is the purpose of this amendment.

[Rachel Hopkins (Luton South and South Bedfordshire) (Lab)]

The point about conversations is really important. I wonder how many conversations my hon. Friend has had with terminally ill people, their family members and children, because I have had quite a few, like the example given by the hon. Member for Solihull West and Shirley, over a number of years now. It is so important to recognise that it is about the individual’s autonomy, but we cannot take away the fact that their loved ones may also derive a benefit in a way that the hon. Gentleman elucidated. Can my hon. Friend see how so many of us here want clarity, but do not want to put at risk an individual’s autonomy with a very subjective decision?

[Naz Shah]

I am sure my hon. Friend did not mean to suggest it in that way, but I feel slightly taken aback by the questioning of whether I understand the importance of this. I remind hon. Members that nobody in this room has had a forced marriage apart from me. That does not mean to say that they do not have empathy when I share my experience. To suggest—

[Rachel Hopkins]

Will my hon. Friend give way?

[Naz Shah]

Let me finish. Perhaps my hon. Friend did not mean to question whether I understand and appreciate it, but it suggests to me, does anybody? Yes, we heard witnesses. We heard evidence. I have heard about it in my own friendship circles. I had a young intern with me not so long ago who had cancer. We talked about this, when I decided to come on to this Bill Committee. A dear friend of mine lost her husband and asked me to support this Bill because of his experiences. I speak to doctors regularly. I have had one parent who died of cancer; the other survived cancer. I have had recent deaths; my own father was in a hospice, and others were in a hospice. To be really clear, I do not think the importance of autonomy is lost on any Member on this Committee or in the House. It is because of that importance that I agreed to take part in this Committee.

[Rachel Hopkins]

I hope that my hon. Friend will accept that I was not questioning her ability to understand the importance of the matter. I wanted only to place on record the importance of having those conversations and to ask whether she recognised that. I am really pleased that she has had so many conversations. That is why so many of us are here and want to see the change in the law, but we do not want to tie it so tightly that it would reduce the autonomy of an individual.

[Naz Shah]

I am grateful that we have been able to have this conversation as we have done. I share my hon. Friend’s concern. Equally, I am also concerned that we may now not have a judge’s oversight on this. There is potentially an amendment seeking to replace that with a panel of experts, which we will not get to debate until we have seen it.

Returning to amendment 94, tabled by the right hon. Member for Braintree, I have already talked about Professor Allan House’s contribution. The importance of the issue is not lost on the House. This includes people who do not want to take up their children’s time. As the hon. Member for Solihull West and Shirley suggested, there is that conversation to be had with families, no doubt. We speak from the privileged position of being able to have those conversations. In an ideal world, we would all be equal, but we are not.

[Daniel Francis]

The one thing that covid taught me was what my hon. Friend is alluding to. Hon. Members heard yesterday a bit about my family situation. I have a child who will never walk, will always be in nappies, will always need to be fed, and will always need to be dressed. During that period, no carer was allowed in the house, and as people know, my wife was also having chemotherapy —thankfully, she successfully recovered. As the carer, who everyone is reliant on, I saw that power imbalance. Everybody in my house was reliant on me during those three months—no one was allowed in the house, my wife was having chemo and my daughter needed round-the-clock care, so to speak. That is the position, which is why I understand this wording. That is the imbalance, whereby somebody could realise that this change in the law now gives them the power to release the burden of their loved one, not for any other reason—that they want their suffering to end—but because they want their loved one to have their life back. I do not know whether my hon. Friend has any comments on that.

[Naz Shah]

I thank my hon. Friend for his valuable intervention. He speaks from his personal experience, and this place and this debate are richer for having those experiences shared. It comes back to the comment made by the hon. Member for Solihull West and Shirley; this is about where there is autonomy. This is about people who make that informed choice without coercion, loss of autonomy, undue influence or encouragement. We are talking about those people; we are not talking about those who do not fall into that category.

Those of us in this House know of inequalities that exist in our communities for disabled people, women, or people with mental health illnesses. We already know that; this is about safeguarding and making sure that we are exploring the reasons why, to safeguard those who do arrive at those conclusions—at that decision of autonomy—so that, should this Bill be passed and become law in two years, we as a Committee will know that we have tried our hardest and our best to support my hon. Friend the Member for Spen Valley to make it the safest Bill in the world.

[Jake Richards]

I am very sympathetic to the amendment, which aims to tackle a mischief that we are all worried about, but there are two fundamental problems. The first, which builds on the intervention from the hon. Member for Solihull West and Shirley, is this issue of deciphering if an action is for your own sake or the sake of others. It is a philosophical question: is there ever really a selfless act? Even if we take an act that may be deemed to be for someone else, it may be because we want that person to receive some pleasure, joy or relief, so in my mind there is a danger that this could become a tautology.

Secondly—I hope that you might be able to comment on this—is there not a danger that we are then putting it on doctors and others in this process to undertake an assessment of welfare? When you are deciding whether something is for an individual’s sake, you are making some determination, are you not, as to what is in their best interests? That directly conflicts with the principles of the Bill, which is all about autonomy and an individual’s choice, rather than others saying what you should and should not do.

[Jake Richards]

Forgive me, Mrs Harris. I apologise profusely.

[Naz Shah]

If we are talking about welfare, I would have thought that this Bill would have included welfare checks, which are absolutely crucial. My definition of welfare encompasses the whole being, with the person at the centre. In this case, welfare would mean putting somebody with a terminal diagnosis at the centre of what service provision looks like, be it for assisted dying or a care pathway through palliative care.

[Jake Richards]

rose—

[Naz Shah]

I am happy to give way if my hon. Friend wants to elaborate.

[The Chair]

Order. Before the hon. Gentleman starts, can I ask for short interventions, please, not speeches?

[Jake Richards]

What I meant by a welfare decision is a paternalistic view, whereby medical practitioners and others say what is in the best interests of an individual, rather than the individual themselves.

[Naz Shah]

I appreciate the clarification and the explanation. I do not feel that having doctors doing this is a contradiction of this Bill at all, because if we go by the letter of the Bill and how it is set out, when a doctor offers those choices, whether it is assisted dying or palliative care, they are giving a choice of welfare options to their patients. That is my understanding, and I am not sure that this is contradicts with the Bill in any way, shape or form.

I have answered my hon. Friend’s first question; can he remind me of his second?

[Jake Richards]

My question was building on the intervention made by the hon. Member for Solihull West and Shirley. It was about whether there can ever be a selfless act.

[Naz Shah]

If we make philosophical and idealistic arguments, we will not be able to legislate on anything. Philosophically, there are people in this House who wear red, blue, green or the colours of smaller parties. We are all different in our positions philosophically. For me, this process is about legislating as well as we can to put safeguards in place that are as strong as possible. I cannot get into that debate because it would not apply to the legal aspect.

[Jack Abbott (Ipswich) (Lab/Co-op)]

To move away from the theoretical, like my hon. Friend the Member for Rother Valley I am sympathetic to what this amendment is trying to do. To give a practical example, let us say that I have been given a terminal diagnosis and say to the doctor, “I personally do not want to go through pain and agony over the next few months, but I am also thinking about my family—I do not want them to suffer alongside me.” I would therefore fall under the definition in this amendment—the hon. Member for Bradford West is shaking her head, but the reality is that I would—because I would also be acting for the benefit of others; I have cited that alongside my own physical pain as a potential reason that I want to do this. As I say, I am sympathetic to what the amendment is trying to do, but I feel that the way it is written would inadvertently include a huge amount of people who are doing it for their own motivations, but clearly the reality of life is that we consider other people as well.

[Naz Shah]

The hon. Member makes a valid point that it would ultimately benefit others. It would—that is a given—but that was not my reading of the way the amendment is drafted. My reading was that “only for your own benefit” means that someone is not being driven by the benefit of others, financial or otherwise. From the point of view of autonomy, if someone chooses to make that decision, of course others will benefit. I take the point that there appears to be a contradiction, but that is not my understanding of how the amendment is written and it is not what I am talking about.

[Jack Abbott]

My hon. Friend mentions the word “only”, but that word does not appear in this amendment. That is the issue: we are opening this up. The amendment says:

“acting for their own sake rather than for the benefit of others.”

In my example, I cited the benefit of others as potential reason that I might seek this.

[Naz Shah]

The hon. Member makes valid point. Maybe the Government would be able to mop this up if this amendment was accepted. That can happen—it is not beyond the scope of Government or the Ministers present.

[Sean Woodcock]

I am grateful for this debate, particularly as lots of people who, on Second Reading, were happy to pass the Bill through to Committee wanted the debate to happen. We should all welcome that, as I know the promoter of the Bill, the hon. Member for Spen Valley, does. I am grateful that we are here.

I will move away from the philosophical debate and return to what I said before lunch: this is about not just the role of the individual—though that is clearly important—but what we see as the role of the state and what we are comfortable with the state allowing. I see this amendment as very much linked to that. Does my hon. Friend the Member for Bradford West think there is something in that—about whether the state is happy for people to cite the benefit of others as a reason for opting for assisted dying?

[Naz Shah]

I thank my hon. Friend for his intervention. That is not something I had spoken to the right hon. Member for Braintree about. Thinking about it, his point is valid: there is always an overlap in terms of whether this is the state interfering or not interfering. In this instance, it is about the state and legislation protecting the individual and ensuring that an autonomous decision, which is what we are trying to get to, was reached, without any coercion, undue influence or subtle manipulation—whatever word we choose to use in these proceedings—and not for the benefit of others.

Too many arguments that I hear in support of the Bill seem to assume that all those who seek assisted dying will do so as a matter of autonomy—as a free choice. Honestly, it would be much easier to support the Bill if that were true, and I sincerely wish it were, because we would not have the issues we have been talking about all today and yesterday. However, we must pay heed to those who do not live their lives in that way. We in this House have a duty to protect those who feel like a burden to those close to them—or who are made to feel like a burden, whichever route that may take, and we have had plenty of conversations about that.

The amendment tabled by the right hon. Member for Braintree would permit doctors to halt an application for assisted dying if they had good reason to believe that an applicant was not acting for their own benefit.

[Sojan Joseph (Ashford) (Lab)]

Would inserting the line in the amendment not also give us another opportunity to assess the patient’s capacity? Under the Mental Capacity Act 2005, a person should be able to “understand” and “weigh” the information, so does having this line not also help us to assess a person’s capacity?

[Naz Shah]

I agree with my hon. Friend’s point. We are not dealing with capacity in this amendment, but I agree that every one of these extra checks and balances would also support the exploration of capacity and would definitely strengthen those conversations with any patient.

The amendment tabled by the right hon. Member for Braintree would not be a perfect safeguard. As we know in this House and across society, nothing, including legislation, is absolutely foolproof. There will be people where, despite the best efforts of the NHS, despite having palliative care and despite having people in these positions, things will be missed. Unfortunately, that happens.

Before I make my closing remarks, I want to come back to where I started—forced marriage. We heard from Dr Jamilla about inequalities and how to spot coercion. There is an added layer to all of this when it comes to women, and also when it comes to people from ethnic minority backgrounds, who already have an inherent distrust, which was magnified during covid.

When it comes to domestic violence, we also know it is harder to spot the coercion, because of the conditioning and the cultural conditioning. My personal conditioning was very different, and it took me until my 30s—years into my adulthood—to recognise it and call it out, despite being an active campaigner against domestic abuse and having access to amazing campaigners in the UK. Going back to Dr Jamilla, some of the conversation she has been having around this issue is about people having that distrust. Coming back to the amendment, we must be able to point out—to draw out—that “benefit of others”. It is harder to spot, so there have to be safeguards.

This amendment, and all the amendments we have talked about today, would benefit the Bill; they would strengthen it. They would in no way, as the Government have suggested, weaken or confuse it or the people applying it.

[Tom Gordon]

Can the hon. Member elaborate on what the amendment would add that previous amendments we have debated would not?

[Naz Shah]

The issue for us in the conversation on this amendment is that we have talked about coercion, undue pressure, undue influence, encouragement and all that, but we have not talked about the benefit to others. It is simply a different conversation; it is about understanding that a person has been coerced and so on, but also for what reason. What is the benefit to others? That is my understanding of the amendment, and that is why I am speaking to and supporting it.

Unfortunately, the Bill as it stands does not have all the necessary safeguards for all those who see themselves as burdens to others, and that is why I support the amendment.

[Kit Malthouse]

I have listened very carefully to the hon. Member, who represents the fine town of Bradford, and to her personal experiences, which have coloured her view. I understand that of which she speaks, and she might be interested to know that I was the author of the first ever violence against women and girls strategy in the country when I was at City Hall. I dealt closely with harmful cultural practices in that strategy, so I do understand the difficulties she elaborated with detecting and combating the influences to which she referred. However, I am going to disappoint her, because I am going to explain why I believe that the amendments make that more difficult and run the risk of making the Bill less safe.

I should mention first, though, that she said that we are dealing with notions of autonomy and trying to achieve a position where people seeking an assisted death do so as a matter of free choice, and she is exactly right: that is what we are all about and trying to achieve. However, as I hope I can illustrate, the amendments may make that more difficult on three levels.

We have talked a lot over the last few hours about precision and novel terms in legality. My first issue with the amendments is the lack of that precision. For example, what does “physical pain” mean? Is it all pain? Is it something as minor as a headache? Is it perceived or actual pain? Is it fear? Does fear become a physical pain, or is it a mental pain?

In the closing stages of bowel cancer, for example, a number of things may happen and a number of things may cause somebody to die. They can have a perforated bowel caused largely by a blockage, as I am sure my hon. Friend the Member for Solihull West and Shirley would say. That would be incredibly painful and lead to peritonitis and organ failure, which eventually leads to death. However, there is a situation where a blockage in the bowel causes a person to vomit effectively semi-digested food and faeces. Is that painful? I do not know whether that is a classification of physical pain. It is certainly uncomfortable and unpleasant, but is it actually painful? I find that the definition of “physical pain”, undefined as it is, and which may be a matter of degree, injects complexity for doctors and lawyers in their assessment of the motivation of a person seeking assisted dying.

Similarly, I do not really know what “benefit” means in the amendments dealing with that. Does it mean financial benefit? Does it mean emotional benefit? Is it perceived or real benefit? Does the doctor have to assess whether a third party is actually getting benefit? Let us assume that it is emotional benefit and that I say—I think it is perfectly legitimate, as my hon. Friend said, for me to say this—“I do not wish my child to witness, know or even learn that the way I died was from the fungating tumours in my neck bursting and,” as we heard on Second Reading, “me drowning in my own bodily fluids. I do not want to get to that stage, and I do not want to burden my child with that.” Do I have to say to the child, who is perhaps an adult child, “How do you feel about it? Are you going to benefit from this or not?” They will respond, “Absolutely not. I want my dad to live as long as possible,” or, “I want my dad to have what he wants to have.”

It is very difficult in these circumstances—do not forget that this will be crawled over by lawyers and doctors—to understand what is actually meant by “benefit”. These are new words—novel concepts—that are being introduced into the law. I did look to see whether there were similar circumstances elsewhere in legislation, and I could not find any. To me, they inject an element of complexity into what we hoped would be, as we discussed earlier, a settled and comprehensible legal framework, in which doctors have previously operated, and should operate into the future. As I say, my first objection is that the amendments inject novel concepts that are largely undefined and that may be actual or perceived, both by the person who is being assessed and by those who are presumably to be in receipt of the benefit.

I am afraid there is also—I am not sure, particularly on the amendments tabled by my right hon. Friend the Member for Braintree—a question in my mind about where my “sake”, whatever that word means, collides with someone else’s “benefit”. As the hon. Member for Ipswich said, if it makes me happy—if part of my dying is me taking satisfaction in the fact that I am not burdening my children with the emotional trauma of watching me die in horrible circumstances—is that for my sake or for their benefit?

[Naz Shah]

The right hon. Gentleman is making a powerful speech. In response to the comment by my hon. Friend the Member for Ipswich, people can have, and will have, an incidental benefit when somebody with autonomy makes a decision. The Government could table tidying-up amendments to clarify that and make this amendment stronger, if it gives an extra safeguard for those who are seeking assisted dying, should the Bill become law.

[Kit Malthouse]

I understand what the hon. Lady is saying, but I am afraid that the amendments do not say that. Even if they did, there would be some difficulty, because you are asking for a further level of complexity in what should be, we hope, a decision made between doctor and patient, in private and confidential circumstances where sensitivity is needed and where we are asking medics to tease out motivations from individuals. I hate to use a pejorative word like “woolly”, but I find the lack of precision in the language troubling. I think it will create yet more complexity and jeopardy for doctors and lawyers.

--- Later in debate ---

[Naz Shah]

That speaks to my earlier point, where I was seeking clarification. I find that I feel very uncomfortable with this process, where the Government are very clearly taking a position, without having an impact assessment in place, on whether the previous amendments and the ones I am talking about would confuse the courts or create uncertainty. Perhaps the Minister can provide clarification, but my interpretation is that the Government are taking a view, not just sharing the position of the Government.

[Stephen Kinnock]

I thank my hon. Friend for that intervention. I will just take us back to the first principles. This is not a Government Bill; it is the Bill of my hon. Friend the Member for Spen Valley, who came top of the ballot for private Members’ Bills. She chose to bring forward this piece of legislation. The Government had absolutely no role whatsoever in drafting the legislation. The Prime Minister then made it clear that the Government will remain neutral in their position on the Bill. However, it is the constitutional duty of the Government to ensure that every Bill that passes through Parliament and secures Royal Assent is workable, deliverable, viable and coherent in terms of the statute.

How does that play into this Bill Committee? Members of the Committee who are not Ministers are here to debate the philosophical, moral, ethical and, in some cases, legal and perhaps clinical aspects of the Bill. Members of the Committee who are Ministers—namely myself and the Justice Minister, my hon. and learned Friend the Member for Finchley and Golders Green—are here to provide observations on the Bill with regard to its legal, practical, technical and operational impact, to ensure that we are doing our constitutional duty to deliver the objectives I just outlined to my hon. Friend the Member for Bradford West.

The answer to the question from my hon. Friend is that when my hon. and learned Friend the Justice Minister and I speak, we focus our remarks exclusively on the legal, practical, technical and operational considerations of the Bill. I assume that the Committee finds it useful to know what the Government’s position is on those matters. We do not opine on the philosophical, ethical or moral considerations that are at the heart of the Bill.

[Naz Shah]

I thank the Minister greatly for his explanation. I am trying to separate the two points. I appreciate the role of both Ministers in providing the Committee with that guidance, as many of us are new to the process. What I am trying to understand, with respect to the amendment from the right hon. Member for Braintree, which I just talked about, is that the Government have asserted a view that the language included would create uncertainty.

[The Chair]

Order. The hon. Member has asked a question and had a response. This Committee is not debating the Government’s stance. It is debating the Bill.

[Naz Shah]

Can I come back to the amendment?

[The Chair]

I am not going to take any more interventions. I will move on to Kim Leadbeater unless the Minister has not finished.

[Kim Leadbeater]

Returning to the amendments before us, I will try to keep my comments brief, as we have had a thorough debate this afternoon. On amendments 95 to 104, I have spoken to the right hon. Member for Braintree and I know that these amendments seek to stimulate discussion, and I am very pleased that they have done that this afternoon. I also know that they come from a good place.

I have already discussed the additional safeguards around training that would be added to the Bill through new clause 8, which states that the Secretary of State must consult

“persons appearing to…have expertise in matters relating to whether persons have been coerced”.

That would consolidate the existing measures in the Bill and, I hope, relate to the concerns expressed in the amendment to some degree.

More broadly, the reasons that someone might choose an assisted death may well include sparing those they love the pain of seeing them suffer, as we have heard this afternoon. That is certainly something that members of my family and people I have spoken to say would matter to them. That should not prevent the provision of assistance. It is surely for that person to decide.

During oral evidence, we heard powerful testimony from Liz Reed about her brother Rob, who had an assisted death in Queensland, Australia. Rob was 39 years old and had a young family when he was diagnosed with stage 4 terminal lung cancer. He was fit, young and healthy, and did not smoke. As well as taking back control at the end of his life, one of his main reasons for choosing an assisted death was so that his young family could remember him as the man and the dad he was. He was not afraid of death, but he was afraid of dying in an undignified and painful way; he was afraid of not getting to say goodbye to his wife and children, or them having to find him after his having had a massive heart attack. Surely we should not decide that that is not acceptable and understandable. It is a perfectly understandable reason for choosing an assisted death.

Liz told us that Rob

“was able to change his mind, which he did, in terms of dates and when it would happen. His views and the views of his family were also taken into account and, through the process, he was treated like a person with autonomy whose choices were being respected.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 254, Q328.]

If relatives were implicitly or explicitly coercing or pressuring someone, that would of course be very different—and that is covered by the Bill—but to prevent someone from wanting to consider their loved ones in their final weeks and months of life does not seem at all reasonable to me.

I have talked about training, which is important and feeds into the debate about the assessment of coercion and pressure—here, I refer again to my new clause 8. As we heard during the oral evidence, who is involved in that training is important. We heard from the Association of Palliative Care Social Workers. Its position statement on assisted dying states:

“As social workers we bring a distinctive perspective and skill set. Our focus is on helping people to get practical needs met; to enable them and their families cope with the impact of serious illness and dying and to plan ahead”.

[Naz Shah]

My understanding is that the judges’ views on capacity relate to the fact that there are only 200 qualified palliative care social workers in the country.

[Kim Leadbeater]

This point is about training, and so about hearing from the right people when it comes to the training of professionals. It is important that we ensure that the Secretary of State must consult such people, and I anticipate that organisations such as the Association of Palliative Care Social Workers would be consulted. The statement continues:

“as well as protecting people from abuse, neglect and coercion at a time…when they are most vulnerable…Our expertise includes building trusting relationships, comprehensive knowledge of safeguarding”.

By looking at the training process, people’s motivations for seeking an assisted death would hopefully be considered.

--- Later in debate ---

[Naz Shah]

My hon. Friend has referred a few times now to us not having this framework. We do not have this framework because we do not have this law. Maybe she can help me to understand or correct me if I am wrong, but this framework does not exist because we do not have this law. For this law to exist, we have to have the framework. I am inferring from her a suggestion that she is somehow intervening for people who might be being coerced in a hospital setting or at the end of life in any case, but that is not the case.

[Kim Leadbeater]

I am not quite sure I understand the point. My point is that there is no law that is checking people’s motivations for ending their lives when they are terminally ill, and that is what this law would do.

I will make some progress, and come to amendments 235 to 245. As we have heard from witnesses, choice at the end of life is not just about physical pain, be it current or potential. It can also be about psychological suffering and mental torment as a result of being terminally ill —and it is of course about taking back control, bodily autonomy, dignity and choice. What about patients who are in severe mental torment and fear as a result of their condition, and terminally ill people who want the autonomy and dignity of taking back control at the end of their lives? Who are we to ask them to prove their level of physical pain or desire to avoid physical pain, and to deny them the choice in their final few weeks or months?

--- Later in debate ---

[The Chair]

I call Naz Shah to wind up. It would be helpful if the hon. Member would indicate whether she wishes to push amendment 94 to a vote.

[Naz Shah]

Yes, Mrs Harris, I do want to push the amendment to a vote.

In summary, the reference to “coerced or pressured” in clause 1 relates only to coercion or pressure by another person and does not cover internalised pressure. In written evidence, the Royal College of Psychiatrists said:

“The Bill focuses on external coercion. That is, for example, coercion from family members with personal or financial motivations to hasten death. While this type of coercion may not always be clear, internal and societal pressures that may reach the threshold of coercion can be even more difficult to detect.”

I am not going to rehash that. I appreciate where we are at with this conversation. The royal college says that the Bill does not address

“more subtle forms of coercion, such as where a person may internalise a feeling of being a burden to others. How might such internalised pressure be identified or responded to in this context?”

It is that important question that we are left with. It continues:

“At what level would implicit or internal pressures amount to coercion? At what point would supporting a person to have capacity to make a decision to request assistance to die constitute coercion?”

That coercion may be used for the benefit of others.

That brings me back to the crux of this amendment: it is about the benefit of others. There is nothing to suggest that there would not be an incidental benefit for people; there can absolutely be an incidental benefit. For the avoidance of doubt, this amendment is not about that. We have had votes on adding language to the Bill, which I voted for. We have heard the Government responses, which I struggle with. Ultimately, I want to push this amendment to a vote because I feel that we need to strengthen the Bill. As it is, there are loopholes, and one loophole is one loophole too many.

Question put, That the amendment be made.

Terminally Ill Adults (End of Life) Bill (Ninth sitting)

Naz Shah Excerpts

Tuesday 11th February 2025 Public Bill Committees

[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.

[Naz Shah]

I recognise that there are eight occasions, but when we debate later clauses I will talk about coercion and manipulation. Those also apply to the issue of capacity, and the Bill refers to them on numerous occasions.

[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.

--- Later in debate ---

[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.

[Danny Kruger]

rose—

[Naz Shah]

I will take this intervention and then address both points.

--- Later in debate ---

[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?

[Naz Shah]

I have tabled an amendment to a later clause that talks specifically to that. The word “only” needs to be removed. We have seen this in Oregon, which I will come to later. We heard in the oral evidence that 60 women assessed to have capacity died because they had anorexia.

[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.

--- Later in debate ---

[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?

[Naz Shah]

I thank the hon. Member for his intervention, but we are not here legislating on anorexia; we are here legislating on the option of assisted death. I am trying to understand where he is going with that argument. It genuinely does not make sense to me.

[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.

[Naz Shah]

My understanding, when it concerns eating disorders and anorexia—let me get this right: are hon. Members trying to equate new clause 1 with that condition?

[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.

--- Later in debate ---

[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?

--- Later in debate ---

[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.

[Naz Shah]

At what stage will we know how the amendments that my hon. Friend proposes have an impact on clause 1? If we make amendments later in the Bill, how will that have an impact on the amendments that we have discussed this morning, in particular in relation to capacity?

[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.

--- Later in debate ---

There may be people out there who think that prisoners do not deserve it. That would be the flipside of the argument. I understand my hon. Friend is not making it; he wants to protect them because they are vulnerable. To me, however, that seems like a cruel and unusual punishment for people who are already serving time in prison, to whom we should not deny the same health-related services that everybody else receives. I will therefore oppose 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.

[Dr Opher]

I have a simple question: is it not illegal to deprive people in prison and homeless people of the same care that the rest of the population receives?

[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.

--- Later in debate ---

[Kim Leadbeater]

rose—

[Naz Shah]

I give way to the hon. Gentleman first.

[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.

[Naz Shah]

I give way to my hon. Friend.

[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.

[Naz Shah]

Absolutely—we will come back to that conversation.

[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?

[Naz Shah]

I do not have any comparable situations; this is uncharted territory.

[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.

[Naz Shah]

The hon. Gentleman clearly has more recent experience of prisons than I have—thankfully. In closing, I will be supporting his amendments to protect people who are vulnerable in prison and people who are homeless.

[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.

--- Later in debate ---

[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.

[Naz Shah]

I note that the Minister used the word “treatment” twice, but we are not talking about a treatment; we are talking about assisted death. I think someone mentioned earlier that it is a treatment, but it is not a treatment, is it? I would welcome his clarification on that.

--- Later in debate ---

[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 Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

[Naz Shah]

rose—

[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 (Ninth sitting)

Naz Shah Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[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.

[Naz Shah]

I recognise that there are eight occasions, but when we debate later clauses I will talk about coercion and manipulation. Those also apply to the issue of capacity, and the Bill refers to them on numerous occasions.

[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.

--- Later in debate ---

[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.

[Danny Kruger]

rose—

[Naz Shah]

I will take this intervention and then address both points.

--- Later in debate ---

[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?

[Naz Shah]

I have tabled an amendment to a later clause that talks specifically to that. The word “only” needs to be removed. We have seen this in Oregon, which I will come to later. We heard in the oral evidence that 60 women assessed to have capacity died because they had anorexia.

[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.

--- Later in debate ---

[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?

[Naz Shah]

I thank the hon. Member for his intervention, but we are not here legislating on anorexia; we are here legislating on the option of assisted death. I am trying to understand where he is going with that argument. It genuinely does not make sense to me.

[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.

[Naz Shah]

My understanding, when it concerns eating disorders and anorexia—let me get this right: are hon. Members trying to equate new clause 1 with that condition?

[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.

--- Later in debate ---

[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?

--- Later in debate ---

[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.

[Naz Shah]

At what stage will we know how the amendments that my hon. Friend proposes have an impact on clause 1? If we make amendments later in the Bill, how will that have an impact on the amendments that we have discussed this morning, in particular in relation to capacity?

[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.

--- Later in debate ---

There may be people out there who think that prisoners do not deserve it. That would be the flipside of the argument. I understand my hon. Friend is not making it; he wants to protect them because they are vulnerable. To me, however, that seems like a cruel and unusual punishment for people who are already serving time in prison, to whom we should not deny the same health-related services that everybody else receives. I will therefore oppose 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.

[Dr Opher]

I have a simple question: is it not illegal to deprive people in prison and homeless people of the same care that the rest of the population receives?

[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.

--- Later in debate ---

[Kim Leadbeater]

rose—

[Naz Shah]

I give way to the hon. Gentleman first.

[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.

[Naz Shah]

I give way to my hon. Friend.

[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.

[Naz Shah]

Absolutely—we will come back to that conversation.

[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?

[Naz Shah]

I do not have any comparable situations; this is uncharted territory.

[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.

[Naz Shah]

The hon. Gentleman clearly has more recent experience of prisons than I have—thankfully. In closing, I will be supporting his amendments to protect people who are vulnerable in prison and people who are homeless.

[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.

--- Later in debate ---

[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.

[Naz Shah]

I note that the Minister used the word “treatment” twice, but we are not talking about a treatment; we are talking about assisted death. I think someone mentioned earlier that it is a treatment, but it is not a treatment, is it? I would welcome his clarification on that.

--- Later in debate ---

[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 (Seventh sitting)

Naz Shah Excerpts

Thursday 30th January 2025 Public Bill Committees

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q Dr Ward, I think the point about a holistic and evidence-based approach is critical. In the work that you did in the Scottish example you gave, how was the terminal illness definition arrived at? How are you capturing those people who are vulnerable and want to have an assisted death, but might end up limited in their scope and ability to access it?

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, yesterday Professor Allan House gave evidence and talked about capacity and coercion, and I want to pick up on some of the concerns. In all four of the jurisdictions that collect data on the issue—Oregon, Canada, Western Australia and Washington—between 35% and 59% of people cite being a burden as a reason for assisted dying. What do you think is the level of confidence of psychiatrists to assess capacity and consent reliably? What would your concerns be, if any?

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 and Professor Hoyano, we heard yesterday evidence about the interplay between assisted dying, the Equality Act 2010 and the European convention on human rights. Should amendments be made to the Bill to deal with those issues? What are your thoughts about the interaction between those pieces of legislation and the Bill?

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.

--- Later in debate ---

[The Chair]

I call Naz Shah to ask the final question.

[Naz Shah]

Q Professor Owen, to follow up on the interaction that Mr Atkinson talked about, where are the gaps in research right now?

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.

--- Later in debate ---

[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 Professor Preston, in your written evidence to the Committee, you said that Parliament should:

“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, you mentioned multidisciplinary teams and decision making. We have heard in a couple of other evidence sessions from palliative care social workers, nurse practitioners and the Royal College of Nursing about the multidisciplinary approach in care. What are your thoughts on the ultimate approval as set out in the Bill being a doctor, another doctor and then a legal okay at the end? Would a more multidisciplinary approach to approval have stronger outcomes or better safeguards?

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.

--- Later in debate ---

[Dr Opher]

I think that my question has been covered by my hon. Friend the Member for Bexleyheath and Crayford. I just wanted to be sure that we were secure if the doctor was not in the room, but that has been answered.

[Naz Shah]

Q My question is to Dr Richards. I will get to where I need to get to, so bear with me. You talk about this being a very explicit conversation, but I would argue that that is not entirely true. We are talking about a set of doctors who will have opted in to have that conversation; not all doctors will do that. We have also had evidence from people suggesting that doctors and lots of other people would leave hospice care if assisted death was provided on the NHS. Yesterday, we had care providers telling us that if people engaged in providing voluntary assisted death, they would leave those hospices. So it is not quite as explicit as what you are suggesting, is it?

Dr Richards: It would have to be. Those examples that you have just given would not mean that it was not an explicit conversation.

[Naz Shah]

But it is not, because—

[The Chair]

Order. One question, one answer. I call Danny Kruger.

--- Later in debate ---

[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, you were talking about elderly people in particular. We have heard evidence, particularly yesterday, about young women under 40 where terminal illness was deemed legislatively applicable to anorexia. It appears that that is quite a phenomenon. When we talk about the explicit conversation that you are suggesting, I would argue that it is not necessarily clear cut. Do you agree that there would be a risk there when it comes to people with anorexia?

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.

[The Chair]

Thank you.

--- Later in debate ---

[Danny Kruger]

Q This is a question for Mr Malone. May I say how greatly I sympathise with what you have been through? I am very sorry to be fighting against you in this matter. I really can imagine how that feels. Thank you for what you said. I just want to ask about your sister’s experience. On the eligibility question, is it your belief that she would have qualified for an assisted death under the Bill, with the six-month terminal illness criterion? To follow up on that, do you think we should expand the scope to include people with motor neurone disease who might not fall within the six months?

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 Thank you very much for coming today and sharing your stories. I have two questions. Julie, you said that you had family liaison and counselling. How long did that go on for? This Bill does not have that requirement, so do you think it is something that we should put in it?

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 Thank you very much for sharing such personal experiences. Liz, you talked about your brother, and going over, and how peaceful it was for you. We have heard lots of witnesses talking about people who have felt like a burden. I am glad that was not the case with your brother’s death. Would you support adding more safeguards to the Bill to make sure that we protect those who are at risk from coercion and who might not have capacity?

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.

--- Later in debate ---

[Dr Shastri-Hurst]

Q My question is directed to Dr Mulholland. Thank you to the Royal College of General Practitioners for the helpful written evidence. I want to pick up on something in it, which is summarised in paragraph 6 but gone into in more detail in paragraph 7, and that is around the refusal of practitioners to engage in the assisted dying process. I note the wording that has been used by the Royal College, which is that GPs and any other healthcare professionals can refuse “on any ground”. That is distinct from the Abortion Act 1967, which in section 4(1) sets out that it can be a conscientious objection. Can you explain why you have decided to take what appears to be a broader expansion of that definition, and why you have chosen that particular wording?

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 My question is to Dr Price. We heard yesterday from Professor House and this afternoon from Professor Owen, who were talking about capacity and coercion. They also talked about how different people’s life experiences impact their ability and their state of mind, and the lack of research or evidence in that area—the courts are grappling with those issues at the moment. Is there any evidence about the effect on patients’ mental health when they have a diagnosis of a terminal or serious physical illness?

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 My question is for Dr Price as well, please. We heard in the week from the chief medical officer earlier, who said that he was “relieved” that this Act based capacity on the Mental Capacity Act, noting that it already provides that

“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.

--- Later in debate ---

[The Chair]

There are three people left who want to ask questions, so can I beg for brevity?

[Naz Shah]

Q Under clause 4(2), doctors would be allowed to raise the issue of assisted dying with a patient, unprompted. Dr Rachel Clarke gave evidence to this Committee that, in some circumstances,

“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, I am really keen that we ensure that if the Bill passes, the voices of disabled people are continually involved in understanding its impact, particularly on the issue that you have just raised. Earlier, we heard evidence about implementation taskforces that are used in other jurisdictions. I am considering tabling an amendment on an advisory council. How might we ensure that the voices of people with learning disabilities can be included in such a body?

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 It is late, and I am far from being an expert on Welsh devolution, but I want to ask Professor Lewis a question, not least because we have not come to him for a little while.

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, you talked in your earlier evidence about depression. One Committee member suggested that 20% of people were on antidepressants; actually, the factual position is that 10% to 11% of the adults in this country are on antidepressant medication, according to the latest statistics. To be clear, are you saying that people who are depressed are more likely to ask for or go down the road of assisted dying?

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 Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Dr Opher]

Q Just to confirm—you have not had any failures of treatment, as far as you are aware?

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 To follow up on that, there is no requirement that the doctor is present when the person self-administers the substance that leads to assisted dying. Am I correct? If that is the case, why does the law not make it necessary for the doctor to remain present until death, because at that point, the doctor would pick up any complications, would they not?

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 We have had lots of witnesses testifying about gaps in palliative care and end-of-life care provision here in the UK. What is the current state of palliative care and end-of-life care provision in Western Australia, please?

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 On that point about palliative care, I will direct my question to Dr Furst. What has been the response from palliative care professionals to the introduction of assisted dying in Australia? We have heard evidence from people working in the sector in the UK, but I am keen to hear about your experience in Australia. I understand that Palliative Care Australia’s national workforce survey explicitly looked at this, so I am keen to hear what its findings were.

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 (Seventh sitting)

Naz Shah Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q Dr Ward, I think the point about a holistic and evidence-based approach is critical. In the work that you did in the Scottish example you gave, how was the terminal illness definition arrived at? How are you capturing those people who are vulnerable and want to have an assisted death, but might end up limited in their scope and ability to access it?

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, yesterday Professor Allan House gave evidence and talked about capacity and coercion, and I want to pick up on some of the concerns. In all four of the jurisdictions that collect data on the issue—Oregon, Canada, Western Australia and Washington—between 35% and 59% of people cite being a burden as a reason for assisted dying. What do you think is the level of confidence of psychiatrists to assess capacity and consent reliably? What would your concerns be, if any?

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 and Professor Hoyano, we heard yesterday evidence about the interplay between assisted dying, the Equality Act 2010 and the European convention on human rights. Should amendments be made to the Bill to deal with those issues? What are your thoughts about the interaction between those pieces of legislation and the Bill?

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.

--- Later in debate ---

[The Chair]

I call Naz Shah to ask the final question.

[Naz Shah]

Q Professor Owen, to follow up on the interaction that Mr Atkinson talked about, where are the gaps in research right now?

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.

--- Later in debate ---

[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 Professor Preston, in your written evidence to the Committee, you said that Parliament should:

“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, you mentioned multidisciplinary teams and decision making. We have heard in a couple of other evidence sessions from palliative care social workers, nurse practitioners and the Royal College of Nursing about the multidisciplinary approach in care. What are your thoughts on the ultimate approval as set out in the Bill being a doctor, another doctor and then a legal okay at the end? Would a more multidisciplinary approach to approval have stronger outcomes or better safeguards?

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.

--- Later in debate ---

[Dr Opher]

I think that my question has been covered by my hon. Friend the Member for Bexleyheath and Crayford. I just wanted to be sure that we were secure if the doctor was not in the room, but that has been answered.

[Naz Shah]

Q My question is to Dr Richards. I will get to where I need to get to, so bear with me. You talk about this being a very explicit conversation, but I would argue that that is not entirely true. We are talking about a set of doctors who will have opted in to have that conversation; not all doctors will do that. We have also had evidence from people suggesting that doctors and lots of other people would leave hospice care if assisted death was provided on the NHS. Yesterday, we had care providers telling us that if people engaged in providing voluntary assisted death, they would leave those hospices. So it is not quite as explicit as what you are suggesting, is it?

Dr Richards: It would have to be. Those examples that you have just given would not mean that it was not an explicit conversation.

[Naz Shah]

But it is not, because—

[The Chair]

Order. One question, one answer. I call Danny Kruger.

--- Later in debate ---

[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, you were talking about elderly people in particular. We have heard evidence, particularly yesterday, about young women under 40 where terminal illness was deemed legislatively applicable to anorexia. It appears that that is quite a phenomenon. When we talk about the explicit conversation that you are suggesting, I would argue that it is not necessarily clear cut. Do you agree that there would be a risk there when it comes to people with anorexia?

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.

[The Chair]

Thank you.

--- Later in debate ---

[Danny Kruger]

Q This is a question for Mr Malone. May I say how greatly I sympathise with what you have been through? I am very sorry to be fighting against you in this matter. I really can imagine how that feels. Thank you for what you said. I just want to ask about your sister’s experience. On the eligibility question, is it your belief that she would have qualified for an assisted death under the Bill, with the six-month terminal illness criterion? To follow up on that, do you think we should expand the scope to include people with motor neurone disease who might not fall within the six months?

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 Thank you very much for coming today and sharing your stories. I have two questions. Julie, you said that you had family liaison and counselling. How long did that go on for? This Bill does not have that requirement, so do you think it is something that we should put in it?

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 Thank you very much for sharing such personal experiences. Liz, you talked about your brother, and going over, and how peaceful it was for you. We have heard lots of witnesses talking about people who have felt like a burden. I am glad that was not the case with your brother’s death. Would you support adding more safeguards to the Bill to make sure that we protect those who are at risk from coercion and who might not have capacity?

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.

--- Later in debate ---

[Dr Shastri-Hurst]

Q My question is directed to Dr Mulholland. Thank you to the Royal College of General Practitioners for the helpful written evidence. I want to pick up on something in it, which is summarised in paragraph 6 but gone into in more detail in paragraph 7, and that is around the refusal of practitioners to engage in the assisted dying process. I note the wording that has been used by the Royal College, which is that GPs and any other healthcare professionals can refuse “on any ground”. That is distinct from the Abortion Act 1967, which in section 4(1) sets out that it can be a conscientious objection. Can you explain why you have decided to take what appears to be a broader expansion of that definition, and why you have chosen that particular wording?

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 My question is to Dr Price. We heard yesterday from Professor House and this afternoon from Professor Owen, who were talking about capacity and coercion. They also talked about how different people’s life experiences impact their ability and their state of mind, and the lack of research or evidence in that area—the courts are grappling with those issues at the moment. Is there any evidence about the effect on patients’ mental health when they have a diagnosis of a terminal or serious physical illness?

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 My question is for Dr Price as well, please. We heard in the week from the chief medical officer earlier, who said that he was “relieved” that this Act based capacity on the Mental Capacity Act, noting that it already provides that

“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.

--- Later in debate ---

[The Chair]

There are three people left who want to ask questions, so can I beg for brevity?

[Naz Shah]

Q Under clause 4(2), doctors would be allowed to raise the issue of assisted dying with a patient, unprompted. Dr Rachel Clarke gave evidence to this Committee that, in some circumstances,

“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, I am really keen that we ensure that if the Bill passes, the voices of disabled people are continually involved in understanding its impact, particularly on the issue that you have just raised. Earlier, we heard evidence about implementation taskforces that are used in other jurisdictions. I am considering tabling an amendment on an advisory council. How might we ensure that the voices of people with learning disabilities can be included in such a body?

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 It is late, and I am far from being an expert on Welsh devolution, but I want to ask Professor Lewis a question, not least because we have not come to him for a little while.

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, you talked in your earlier evidence about depression. One Committee member suggested that 20% of people were on antidepressants; actually, the factual position is that 10% to 11% of the adults in this country are on antidepressant medication, according to the latest statistics. To be clear, are you saying that people who are depressed are more likely to ask for or go down the road of assisted dying?

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 (Fifth sitting)

Naz Shah Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Sarah Olney]

Q There is no evidence that it reduces it, so it continues at the same rate: it does not increase, and it does not reduce. Is that what you are saying?

Professor House: Well, it increases, but there are so many factors. I will give you one example. Oregon has been widely cited as a model for this sort of thing, although people have been a bit more uncertain in recent times. At the time that Lord Falconer introduced his Bill in the Lords in 2014, Oregon was cited as a place where levels had stayed much the same—not of suicide, but of people receiving assisted dying. In the decade since then, the number of people going through the assisted dying programme has gone up 500%, and the number of suicides has gone up 20%.

[Naz Shah (Bradford West) (Lab)]

Q Professor House, you have said that people applying for assisted dying may be in a state of vulnerability. What is vulnerability and how can the Bill be amended to make sure that vulnerable people do not inappropriately choose assisted dying?

Professor House: Vulnerability is not just an inherent characteristic of individuals. It is the presence of these external factors, circumstances, and internal factors, state of mind, that influence and bias somebody’s thinking about whether their life is worth continuing with and whether they want to end their life. Its importance is that exploring those factors and considering what can be done to ameliorate them can lead to a change of mind. If we do not explore those factors and we do not attempt to ameliorate them, we are losing an opportunity to change the mind of people who may rethink their desire to end their life.

Why I think of it as a vulnerability, rather than just as factors that influence a rational decision, which feels rather like how it is considered in the Bill, is that the emotional tone of the discussion that you have with people about all those factors is negative. 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. The worry is that because there is nothing in the current medical assessment that requires a careful exploration of these factors, there is really no opportunity to change them.

[Naz Shah]

Q Richard, thank you for coming in at such short notice. It is very much appreciated. Do you have concerns about whether the safeguards in the Bill adequately protect against coercion and vulnerability as Professor House has just described?

Richard Robinson: Yes, we have concerns. I understand there is a potential amendment around ensuring that training and extra safeguarding elements are added to the Bill. We would be very supportive of that. As I have already said, while we have concerns, we also need to weigh that up around the notion that older people deserve the same kind of independence and autonomy as any other demographic. Therefore, the notion of vulnerability only extends to a proportion of those people who are older. Not all older people are vulnerable; it is important to say that.

I have already said in an answer to another question that we are very concerned that the knowledge of even the notion of the abuse or coercion of older people is not widespread across the UK. If anything, that is getting worse rather than better, so this Bill really shines a light on a microcosm of society. We could be working together more adequately to ensure that older people are better represented, from an abuse and a coercion perspective, to ensure that any decision making is done within a safeguarding context. We are some way away from that at the moment.

[Naz Shah]

Q Finally, to Dr Mullock, you have said that in all jurisdictions that have legalised assisted dying, the only meaningful gatekeeping is done by medical professionals. We only have retrospective monitoring that is primarily reliant on honest reporting, particularly discovering whether, or how frequently, coercion or flawed assessment has led to inappropriate assisted dying, and therefore challenging it, so it is impossible to know how many people have been sacrificed with lawful AD regimes. We have witnesses who have said there is no evidence of coercion, especially in examples in Australia and some US states where some assisted dying schemes have been implemented. When they say that, do you think they are being accurate?

Dr Mullock: I am sure they are being accurate in terms of the data before them. The problem is that it is difficult to know and, as Richard Robinson has pointed out, this is a hidden problem. In terms of the Bill that we are discussing, one possible weakness here is that it identifies, only very obviously, problematic conduct in terms of coercion or pressure exerted by another person, and actually the kind of undue influence that might occur might be very subtle. More needs to be done to recognise that and the subtle encouragement that might take place, where a relative might frame their support for the person seeking to die in terms of, “This will be better for you,” and, “Have you considered this?” That is not necessarily an example of clear abuse, so when the person seeking to die then consults the doctor, they are not going to characterise what has happened to them as coercion or abuse. More needs to be done to discuss with the person whether or not they have been encouraged by the people around them.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q This is a question to Professor House. I know you are opposed to the Bill, but if it were to pass, what role do you see for psychiatrists in a multidisciplinary approach?

Professor House: It is a difficult question, isn’t it? I have already said that there is an element of assessment that is needed here—that is not currently acknowledged very much in the Bill—of somebody’s psychological state. I say “psychological state”, which has these elements to it, one of which is the presence of diagnosable mental disorder—the top of the list of importance is depression, which is well known, particularly in the elderly, not to be that easy. Older people do not express distress necessarily as openly and obviously as younger people do. There is an element of the psychological bit of assessment, which you could call psychiatric assessment, that attempts to identify and diagnose mental disorders, particularly depressive disorders. That is particularly difficult in the elderly because they are sometimes what is called “masked”. There is then the element, which is mentioned in the Bill, of the difficulty at times of judging somebody’s mental capacity. The trouble with the ideas of incapacity and coercion, both of which float around a lot, is that they suggest a very high threshold. There is this middle ground, which we have just been hearing about, with a degree of impairment of judgment, or bias in judgment because of what is going on. Those are the sorts of areas where you would want a mental health professional and probably a psychiatrist, but a psychiatrist with a particular interest in this sort of area.

--- Later in debate ---

[The Chair]

I am sorry—just bear with me. Seven people wish to ask questions, and we have just half an hour. If you do answer, can it be very succinct if possible?

Fazilet Hadi: Thank you. I just wanted to support the Baroness, and also say that we believe the Bill will pose a challenge to protected characteristics, particularly of disabled people—and indeed other groups, because disabled people are LGBTQ+ and are black and minority ethnic. The equality journey for disabled people is relatively recent in this country. The Disability Discrimination Act was only passed in 1995, and the Equality Act was only 15 years ago. We are a country that is unequal—that has internalised ableism against disabled people—so I do think the Bill will have a serious and profound negative impact against the valuing of disabled people’s lives.

[Naz Shah]

Q I have one question following up with Baroness Falkner; then I will come to you, Fazilet, if I may. The Equality and Human Rights Commission’s briefing says that

“to ensure that assisted dying is compatible with Article 2 and Article 3 rights…high-quality palliative care should be available to all who need it.”

Given that there is no requirement of an assessment of the availability of palliative care before the Bill is passed, how certain are you, Baroness—and how certain do you think we can be—that in passing this Bill, article 2 and 3 rights are not being breached?

Baroness Falkner: Forgive me; I should have been clearer about that. That was what I was referring to earlier. We have quite a lot of evidence. Marie Curie published a “Better End of Life” report in 2024 that talked of

“patchy and inconsistent provision of care”.

There is regional variability. The Care Quality Commission and Hospice UK have raised the issue of poorer access to palliative care for people with learning disabilities. In 2022, Marie Curie also highlighted the issue of cultural and ethnic inequalities. That is why an assessment at this point in time, before MPs have a definitive vote on the proposals, would be the right thing to do. It would also increase public confidence in the Bill. We think that public confidence in the measures being proposed would be profoundly important to people’s trusting that doctors and judges will also be mindful of their responsibilities in an adequate manner where terms are not clearly defined.

[Naz Shah]

Q Fazilet, doctors are members of a caring profession, but there are ways in which—wittingly or unwittingly—they can end up coercing disabled people; there are reports of that. Would I be right in saying that? If so, how does this happen and how common is this experience for disabled people?

Fazilet Hadi: Disabled people share their stories with us and other organisations. I am sure that doctors are a mixed bag, like all of us, but our experience of the NHS and of the medical profession is not wholly positive. We often find that doctors, because they cannot treat or cure us, do devalue our lives. We have had disabled people who have actually had it suggested to them or their families that their lives are expendable, when actually those people have got a lot of years to give.

We also know that when you acquire disability, which most people do—most people are not born with one—it is absolutely frightening. I am sure that most of you would be absolutely frightened to be blind; it is not something you are going to die of, but you will have that fear, because you are not used to it. Whenever you acquire a disability or that disability gets worse, you will have fears, and I suppose that makes what doctors say even more important.

If doctors are not on our side because they are thinking, “Should we mention the fact that they could have an assisted death?”, that poses a big cultural issue for the NHS, but also for us having confidence in the NHS. I actually find the NHS to be one of the organisations and institutions in this country that is least comfortable with disability; honestly, I could probably get better equality at my railway station. I say that because I think doctors have a very medical model—of course, we welcome that: they want to cure, they want to treat. But they do not always have the empathy to understand that some of us lead really good, fulfilled lives with the most complicated health conditions or impairments.

Treating doctors as absolutely scientific and the fount of all knowledge: I think those days are gone. On giving them the powers to steer us towards assisted dying, I should say that they are not a group always on the side of people with disabilities. I am not really picking on doctors. To be honest, society has a lot of internalised ableism, and doctors are just part of that wider society.

[Lewis Atkinson]

Q I have a question for Baroness Falkner. I want particularly to probe the socioeconomic duty. What is your assessment of that as it relates to agency and control at the end of life? My constituents in Sunderland, unfortunately, are on average notably less well off than the rest of the UK. Is it not the case that at the moment there is choice at the end of life for people who are well off and able to travel to Switzerland, but poorer people do not have that choice? What is the EHRC’s view from a socioeconomic point of view?

Baroness Falkner: For clarity, a socioeconomic duty has not been incorporated. It is the current Government’s intention to incorporate that part of the Equality Act, but it has not been incorporated so we are not looking at it through that specific prism. But you make a very valid point because inequalities in healthcare, housing and all the associated factors that play into good health and wellbeing are there, and they exist palpably—even across geographical parts, from one bit of an area to another. They play actively into it.

Ms Hadi will be able to give better testimony than I could on this but, from what one understands, GP provision and general access to healthcare are poorer where demographics are poorer than it is in the better performing parts of the country. One other factor to consider in terms of a postcode lottery is that people in wealthier parts of the country tend to be more highly represented in private healthcare than in public healthcare and use of the NHS. That also impacts their choices and the care they get.

Fazilet Hadi: On health inequality, I take your point about how some of us can afford to fly off to Switzerland and some cannot, but some of us live in boroughs where we will die 10 years earlier and some of us have learning disabilities and might die 27 years earlier. I know you are looking at clauses, but this Bill will go into the real world, and that is what is happening in the real world—people are not getting social care and not getting palliative care. They are dying earlier. More poor people will die earlier and more poor people will have fewer options, fewer choices, less nice homes and fewer facilities to support them. As Baroness Falkner said earlier, they will unfortunately have insufficient social care and palliative care. When we are looking at inequalities, we need to note that this Bill is going to be plunged into a society that has deep, entrenched health inequalities that do not play out well for people who are poorer.

--- Later in debate ---

[The Chair]

Order. I repeat that we have about 15 minutes left and four people left to ask questions, plus the previous question. Could hon. Members appoint who might answer the question? I do not want to cut off witnesses right at the end; it would be rude to do so. Who wants to take that question?

Dr Hussain: I will take that one. As I have said, in Bradford I have been going into the communities and meeting them in community groups where they already meet—it is their safe space. Over the last three to four years, we have done a series of workshops just opening it up: “What is death and dying like for you?” We have done that with the Pakistani women’s group in particular. We have recently moved on to go, “What stuff do you want to know about?” We had a series of four workshops where they could choose anything, so they talked about stuff such as religion and what services are available—none of them knew what services we had, which is shocking. But the workshop that they all voted for the most—and it was packed—was on benefits. These women are structurally so disadvantaged; they were asking about pensions and so we had benefits advisers come in. The women asked, “Please could we set this up monthly, for you to come speak to us and inform us?”, but it was a “No, we don’t have capacity.”

I have been asking for these workshops to be scaled up across Bradford. What do I get told? That it is not the hospices’ role, not the hospital’s, not the integrated care board’s. I have gone and presented my data and the feasibility with “This is how we can do it, this works really well”, but everyone says it is not their job. That is why I think the public health approach going into communities requires a completely different approach—it needs people who are seen as trustworthy and it requires us to be trustworthy, that is, we go in there, genuinely listen, and do stuff about the stuff talked about. I have done it and that is where the trust comes from.

It requires core funding, and the hospices cannot stretch to that—that is a huge issue. I have done it with a few groups, and to do that at scale in a place like Bradford—it absolutely has all the assets to do this—the funding has to happen. That is absolutely needed. We need to have that reciprocity, genuinely going in there and saying, “We’re here to hear, and we will act on that.”

Sam Royston: I agree with everything Jamilla says, as always. There are two connected issues here. One is about better whole-community conversations about death and dying, and death cafés are a fantastic example of that. I also think, incidentally, we need much better conversations about death, dying and bereavement in schools. We have worked recently with a number of other charities on getting bereavement education on the national curriculum, which I think would be a fantastic step forward. We need better whole-society conversations about death, dying and bereavement.

However, there is another conversation, which is about practical discussions about people’s preferences at the end of life—advance care planning conversations. We need to get much better at them—better at them happening and particularly better at them being acted on. We did a survey recently on why people do not have those conversations about their cares and wishes for their end-of-life preferences, and the key reason people said they did not have them was because they felt they would not be acted on. So we need to make sure that we are thinking about—and this includes ensuring access to palliative care support—how to enable those conversations, when they happen, to be acted on.

We also, incidentally—this is a bit of a technical point—need to make sure that those preferences are shared across services. There is very poor data sharing at the moment; ambulance services and the hospice needs to have that, and the GP and hospital need to know what people’s preferences are. We need to make sure that everyone involved in the care of that person is able to respond to those preferences.

[Naz Shah]

Q Thank you to all of you and for what you do. I will direct my question to Dr Jamilla—it is so lovely to hear so much about Bradford. I want to talk about what Dr Rachel Clarke said yesterday. She said that when patients had begged her to end their life, it was not because of the cancer but because they had not received proper palliative care. From your research and experience, would you say that ethnic minorities or those from socioeconomically deprived backgrounds do not always receive good palliative care? What are the dangers in this Bill for you?

Dr Hussain: The data is quite clear: ethnic minority groups do not have good access to palliative care services. We have been talking today about increasing the access to palliative care, but we need culturally competent and safe palliative care to meet the needs of those people, particularly those who are most disadvantaged. We do not just need to increase the offer; it also has to meet the needs of those who are most structurally disadvantaged. In Bradford, I have spent three years trying to collect all the data so that I can understand the inequalities. But in our specialist palliative care team we reduce the inequalities for ethnic minorities, because we see them in A&E and the hospital, and we go to where they are at. The risk for somewhere like Bradford, where we are doing okay—we have a long way to go—is that the Bill creates a fear in those communities. I have been going out and trying to build trust—being trustworthy—and they made it really clear to me by saying, “We trust you; we don’t trust the system. So if I came into hospital, even if your team was there, I would be really scared to access palliative care.” In a system that is doing okay, we are now adding this new risk. We need to mitigate against that.

The public health approach is really important, as is going into those communities. But we got a lot wrong for those communities post-covid, and the reason we got a lot wrong was that we did not have representation from those groups at the decision-making table at the most senior level. The people who were represented were consulted. We need that representation. I think we can do this, but the change we need is that at the most senior level we need representation from those communities. They need to have the power to make decisions. It is those people, who are going to be most harmed by this, who should be deciding what “safe” is. They should be the ones who decide if we have reached that safety level, otherwise we are going to see the same things that we saw in covid.

[Naz Shah]

Q Building on that, Chris Whitty and the British Medical Association said, from an ethnic minorities and reflection point of view, that the Mental Capacity Act 2005 and safeguarding training are fit for purpose. We know that we do not have a workforce that is reflective of the communities it serves and that we do not have representation at high levels, so in your clinical experience, for disadvantaged groups, do you think the training on capacity and coercion is fit for purpose?

[The Chair]

Order. I am sorry to do this but we have eight minutes left, and Members have three questions. This is the fourth question, so I ask those who answer to be as concise as they can, otherwise we will not get through the questions.

Dr Hussain: I think I have touched on that before. From my experience, there are discrepancies—it is not like six doctors always come out with the same answer. I have the utmost respect for Professor Chris Whitty; I know that we was not saying that this is the case across the board. We see those discrepancies, and with those vulnerable groups—ethnic minorities and those from poor or disadvantaged backgrounds—we have to spend even more time to get to understand it. So there are even more discrepancies for those groups. Ultimately, I do not think 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. I think that is a real challenge, but it is doable if we can get everyone on the same page.