PARLIAMENTARY DEBATE
Terminally Ill Adults (End of Life) Bill (Fifteenth sitting) - 26 February 2025 (Commons/Public Bill Committees)
Debate Detail
Chair(s) Peter Dowd, Clive Efford, Sir Roger Gale, † Carolyn Harris, Esther McVey
Members† Abbott, Jack (Ipswich) (Lab/Co-op)
† Atkinson, Lewis (Sunderland Central) (Lab)
† Campbell, Juliet (Broxtowe) (Lab)
† Charalambous, Bambos (Southgate and Wood Green) (Lab)
† Francis, Daniel (Bexleyheath and Crayford) (Lab)
† Gordon, Tom (Harrogate and Knaresborough) (LD)
† Green, Sarah (Chesham and Amersham) (LD)
† Hopkins, Rachel (Luton South and South Bedfordshire) (Lab)
† Joseph, Sojan (Ashford) (Lab)
† Kinnock, Stephen (Minister for Care)
† Kruger, Danny (East Wiltshire) (Con)
† Leadbeater, Kim (Spen Valley) (Lab)
† Malthouse, Kit (North West Hampshire) (Con)
† Olney, Sarah (Richmond Park) (LD)
† Opher, Dr Simon (Stroud) (Lab)
† Paul, Rebecca (Reigate) (Con)
† Richards, Jake (Rother Valley) (Lab)
† Sackman, Sarah (Minister of State, Ministry of Justice)
† Saville Roberts, Liz (Dwyfor Meirionnydd) (PC)
† Shah, Naz (Bradford West) (Lab)
† Shastri-Hurst, Dr Neil (Solihull West and Shirley) (Con)
† Tidball, Dr Marie (Penistone and Stocksbridge) (Lab)
† Woodcock, Sean (Banbury) (Lab)
ClerksLynn Gardner, Lucinda Maer, Jonathan Whiffing, Committee Clerks
† attended the Committee
Public Bill CommitteeWednesday 26 February 2025
(Afternoon)
[Carolyn Harris in the Chair]
Terminally Ill Adults (End of Life) BillAmendment proposed (this day): 322, in clause 3, page 2, line 13, at end insert
Question again proposed, That the amendment be made.
Amendment 49, in clause 3, page 2, line 13, at end insert—
“(2) The burden of proof for an assessment of a person’s capacity is the balance of probabilities as required under section 2(4) of that Act.
(3) For the purposes of any such assessment, the principles set out in subsections (2) to (4) of section 1 (The principles) of that Act apply.”.
This amendment would set out the burden of proof for capacity assessments as being the same as the Mental Capacity Act 2005 and apply the principles from subsections (2) to (4) of section 1 of the Mental Capacity Act 2005.
Amendment 50, in clause 3, page 2, line 13, at end insert—
“(2) An assessment of a person’s capacity under this Act must include, but is not limited to, an assessment that the person understands—
(a) the options for care and treatment of the terminal illness, including—
(i) the extent of prognostic certainty of their illness or condition, and
(ii) the likely effects on day-to-day functioning, symptom management, and pathway to and experience of death of—
(A) relevant and available care and treatment including palliative care, hospice or other care,
(B) withdrawal or absence of care and treatment, and
(C) requesting assistance in ending their own life under the terms of this Act.
(b) a decision to proceed under this Act does not prevent or make unavailable any care and treatment provision that would normally be provided.
(c) the person’s decision to proceed under this Act must be theirs alone and not bound or directed by the views or decisions of others.
(d) the person is able to change their mind at any stage of the process for requesting assistance to end their own life under the provisions of this Act, regardless of previous decisions.
(e) a decision to proceed under this Act will lead to the provision of a substance that is reasonably expected to end someone’s life following administration and is reasonably expected to be irreversible.
(f) relevant legal consequences from proceeding with a request for assistance to end their own life, including life insurance and categorisation of death certification.”
This amendment would set out certain non-exhaustive requirements for a finding that a person has capacity.
Amendment 398, in clause 3, page 2, line 13, at end insert—
“(2) The following provisions of the Mental Capacity Act 2005 shall not apply to this Act—
(a) sections 1(2) to (4)
(b) sections 2(2) and (4).
(3) Section 2(1) of the Mental Capacity Act 2005 shall apply to this Act as if it read as follows—
‘For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter.’
(4) A person shall be considered not to have the capacity to make a decision to end their own life unless it is proven beyond reasonable doubt that they do have that capacity.”
This amendment disapplies several principles of the Mental Capacity Act: the presumption of capacity, the duty to help someone reach capacity, the irrelevance of an unwise decision, the application of the balance of probabilities, and the diagnostic test. It retains the functional test of capacity and requires that capacity be proven beyond reasonable doubt.
Clause stand part.
“I would suggest that anybody who pretends that those assessments are easy and routinely done well in the NHS has not got enough experience of observing that happening. I teach capacity assessments to doctors and medical students, and it is often the case that they are very poorly conducted.”—[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]
That is my experience as well.
We also talked about the second doctors. In the NHS, especially in the mental health sector, my experience is that many of the doctors are not in substantive roles—many locum doctors work in many areas. With my experience, I am not confident that trainings are being taken up by many of the people working in the NHS. I do not think that any of the trusts would be able to evidence that they have an 100% completion rate for their mandatory training. Especially for locum doctors, there is no monitoring system by the trusts. I am therefore not confident that this training would be robust enough to support some of the claims.
My larger issue is around the independent doctors. Again, I will use some examples of how the Mental Health Act 1983 has been carried out in its current format. Those cases always use a section 12-approved doctor, who is a second doctor and they may not have had any kind of contact with the patients. We may or may not end up in that sort of similar situation. That is the point I was making earlier.
As the Royal College of Psychiatrists mentioned, capacity can change and decisions are opinions with margins of error. I mentioned my experience working in mental health wards earlier, and the hon. Member for East Wiltshire talked about the capacity assessments carried out when patients are standing by or threatening to jump off a bridge. I am not comparing these situations or saying that they are similar, but we have to make decisions based on capacity. In my experience of discharging people from hospital in a mental health unit, when somebody is threatening, “I’m going to kill myself if you discharge me”, the multi-disciplinary team—the doctors and the nurses—have to make a decision on whether to discharge the patient based on their capacity at that time.
Capacity is assessed based on whether someone is able to understand information—can they retain, use and weigh information, and can they communicate their decision? We cannot compare that with the situation of somebody asking for assisted dying. I want to make it clear that the capacity assessment is the key. I would love to support this amendment. As I said earlier, this issue was one reason I voted against the Bill on Second Reading, but passing this amendment might change my position and I would love to support it.
Some proposed amendments are featured in the Bill, either directly or implicitly, but I do not see how amendment 50 would overcomplicate or lead to ambiguity. It is a quite direct and, dare I say, common-sense ask that we should all support. I take the point made by the right hon. Member for North West Hampshire on proposed new subsection (2)(f) of clause 3, as inserted by amendment 50, though I confess I did not read it in the same way that he did. I read it as saying that anyone looking to go down this route should be made aware of the legal consequences. That is a sensible suggestion.
I do not expect a doctor would be going into people’s bank accounts or deeply understanding their legal affairs, but due consideration, advice and information should be imparted to the person who is applying. That is how I read it; I did not think it would be a hugely intrusive, in-depth study into a person’s personal finances.
In my view, there is nothing in amendment 50 that specifically says, “This would be an intrusive look at someone’s personal finances.” The measure—on the advice that would have to be given—is a proportionate one. Yes, it could be reasonably argued that proposed new subsection (2)(c) to clause 3, as set out in amendment 50, has already been covered under things that we have discussed extensively, such as coercive control and pressure. Equally, I do not think that any of the language in the amendment would necessarily overrule any other issues or make them more ambiguous. From that point of view, I will be supporting the amendment. I do not think there is anything in it that would override or lead to complications with any other part of the Bill, but it does put in black and white on the face of the Bill some of the very basic processes that should be happening.
I appreciate that many of the points in amendment 50 are already happening or feature directly or implicitly in the Bill. However, I do not think there is any harm in the amendment; in fact, given the nature of what we are talking about and the fact that this legislation is unprecedented in this country, we should be very clear and direct. I do not think it will lead to confusion for our medical profession. These are straightforward and common-sense asks. On that basis, I will be supporting this amendment.
We will go down a very difficult route if we set out the regulation in primary legislation for every individual area of medical practice in this country. We do not have an equivalent version for how doctors should talk to their cancer patient and what information they should provide. We do not have the equivalent in various other sensitive acts, such as the Abortion Act 1967, the Human Fertilisation and Embryology Act 2008 and so on. The reason is that we rely, as set out in statute, on regulation through the General Medical Council.
I want to read into the record some of the existing General Medical Council guidance for doctors on giving information to patients. Of course, this covers any doctor-patient interaction, and it would apply in this case as well:
“The information you give patients
10. You must give patients the information they want or need to make a decision.
This will usually include:
a. diagnosis and prognosis
b. uncertainties about the diagnosis or prognosis, including options for further investigation…
c. options for treating or managing the condition, including the option to take no action
d. the nature of each option, what would be involved, and the desired outcome
e. the potential benefits, risks of harm, uncertainties about and likelihood of success for each option, including the option to take no action.”
That is already set out by the General Medical Council.
This set of amendments seeks to change the way in which capacity is determined. As drafted, the Bill requires that a terminally ill person must have capacity to make a decision to end their own life before they meet the conditions for accessing assisted dying. Capacity in the Bill is determined in accordance with the Mental Capacity Act 2005, which presumes capacity unless it is established to the contrary. Amendment 322 would reverse the presumption of capacity and, in effect, establish a presumption of incapacity.
It may be helpful to the Committee if I set out the Government’s understanding of both the Mental Capacity Act and the implications for the Bill. Section 1 of the Act sets out several guiding principles, including that a person must be assumed to have capacity unless it is established that they lack capacity. Section 3 sets out a description of the factors that demonstrate that a person is unable to make a decision for themselves: that the person is unable to understand the information relevant to the decision; unable to retain that information; unable to use or weigh that information as part of the process of making the decision; or unable to communicate their decision. This inability must be because of an impairment or disturbance of the functioning of their mind or brain.
Turning to the Bill, at each stage of the process an assessment of capacity would be required. This assessment of capacity, in accordance with the Mental Capacity Act, is separate to the considerations of whether a person holds a clear, settled and informed wish to end their own life, which is also required by the Bill.
Amendment 322 would disapply section 1(3) of the Mental Capacity Act, which is the principle that a person would not be treated as lacking capacity unless all practicable steps had been taken to help them to make a decision. This could create challenges for practitioners who have experience using the Mental Capacity Act, as they would need to apply a new approach.
Amendment 49 seeks to apply a consistent approach to the burden of proof when assessing a terminally ill person’s capacity for assisted dying. The Mental Capacity Act has two evidential tests. In court proceedings to determine capacity, the balance of probabilities test applies. When care or treatment is given to someone on the basis that they lack capacity, there is protection from liability if there is a reasonable belief that the person lacks capacity and the intervention is in the person’s best interest. The amendment would diverge from this evidential approach. It would also have implications for the workforce. Requiring doctors who have experience in applying the reasonable belief test to instead apply a balance of probabilities test for assessing capacity would likely make the current established approach more complex and potentially less safe.
Amendment 50 seeks to specify certain matters that the person must be assessed as being able to understand in order for a determination to be made that they have capacity. Under the Mental Capacity Act, when a capacity assessment is carried out, the assessor must determine the salient information that the person needs to understand, retain and use or weigh based on the circumstances of the case. The amendment would diverge from this approach, both by specifying in statute the information to be understood and by including the requirement only to understand the information, not to retain, use or weigh it. The Committee may wish to consider whether that would in some respects weaken the test.
Amendment 50 might create two legally distinct frameworks for decision making that doctors would be expected to use. Again, this may introduce additional complexity for those undertaking these assessments.
The Government do not accept the argument that bringing forward a new parallel framework of legislation at the first step would improve the workability and operationalisation of the Bill. My role as Minister on this Committee is to talk about the fact that the Bill needs to be workable, operational and legally watertight. The Government’s general view is that if we have a legislative base that, in our view, works—namely, the Mental Capacity Act 2005—we should not add more complexity into it.
Again, this is the process that every Government go through in pretty much every single aspect of policy that they deal with. They have a legislative basis; they bring forward regulations; they deliver training and they build capacity; and the system works on that basis. We then need to ensure that we have a system that is flexible, robust and resilient enough to deliver and to address whatever challenges it faces.
“For certain kinds of complex decisions (for example, making a will)”—
and the others I have just mentioned—
“there are specific legal tests…in addition to the two-stage test for capacity.”
It already exists within our law; for other tests, there is an additional test.
Amendment 398 would remove the existing presumption of capacity in the Mental Capacity Act, thus requiring a capacity assessment in every case. The amendment would also establish a different test for assessing capacity with regards to the decision to seek assisted dying. Establishing a lack of capacity would not be based on an inability to make a decision because of an impairment of, or disturbance in, the functioning of the mind or brain, as in the Mental Capacity Act. Rather, this would allow for the consideration of other factors, such as immaturity. It would also apply a higher standard of proof than the Mental Capacity Act requires for other decisions, including for serious medical treatment, by requiring assessors to establish capacity “beyond reasonable doubt”. This may raise questions about the nature and extent of the evidence required.
In summary, the amendment would introduce a new framework for assessing mental capacity specific to assisted dying. This may create operational challenges for practitioners and healthcare professionals who are well experienced in applying the Mental Capacity Act.
An amendment was tabled by the hon. Member for Richmond Park that would have replaced clause 3 altogether, and that would have been understood as a parallel system—which would be appropriate because we are discussing a new order of intervention, which I will not call a medical treatment—but we are not doing that. We are accepting the Mental Capacity Act. It is not a parallel process: it is one that builds on the foundation of the Mental Capacity Act in a way that already happens in other respects, as the Minister has described. It is a question of putting it in legislation or into a code of practice. I recognise his arguments, but will he please acknowledge that we are proposing to build on the Mental Capacity Act and enhance it in legislation to make it safer?
The Government’s analysis of this group of amendments is that, to varying degrees, they would not add clarity; they would add more complexity, partly because they would either create a parallel legal framework or put new elements into the mix that would create operational challenges for practitioners. That is the Government’s fundamental analysis, but it is a finely balanced judgment and I absolutely accept the hon. Member’s argument.
Clause 3 sets out that any assessment as to whether a person has the capacity to make a decision to end their own life is to be determined in accordance with the Mental Capacity Act 2005, sections 1 to 3 of which establish the principles and criteria for assessing a person’s capacity to make decisions. Section 2 of that Act establishes that a person lacks capacity if they are unable to make the decision in question, owing to an impairment or disturbance in the functioning of the mind or brain. Section 3 states that a person is unable to make a decision if they are unable to
“understand the information relevant to the decision…retain that information…use or weigh that information”
as part of the decision-making process, or communicate their decision.
As the Committee will be aware, the Mental Capacity Act has for some time provided a robust framework for important and difficult decisions, and it is familiar to clinicians. I hope that my remarks have been helpful to the Committee in considering the Bill and the amendments.
Over the past few weeks, hon. Members will have heard, long and hard, about where I come from on the clause stand part issue. This has been one of my greatest difficulties. It drove me to oppose the Bill on Second Reading, and I continue to have grave concerns that the Mental Capacity Act 2005 was not written for this scenario. I draw Members’ attention to my exchange with my hon. Friend the Member for Stroud this morning when, on decision making in the Mental Capacity Act, it was accepted that it has to be presumed that somebody has capacity, and in those scenarios a doctor must assist in the decision-making part of the process.
My great concern—I am sure we will continue this debate when we come to clause 4—has been around people with learning disabilities, and that is where I have ended up in this place. I have said this before and I am sure I will say it again in my contributions: people may think that I have a vested interest, but actually my daughter will never have the capacity to make these kinds of decisions. I am here in this Committee because hundreds of thousands of people in this country are involved in family decisions where a child or a loved one does have enough capacity. The Mental Capacity Act was rightly written to allow them to live independently, buy a coffee and do their banking, but I do not believe it was written for this scenario, so I will support the amendments.
I presume that the amendments may well be rejected. I look forward to discussing, in due course, the amendments tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), because they bring us into a scenario that does exist in the medical field, in respect of discussions with the doctor. As things stand, I will support the amendments. Unfortunately, I will oppose clause stand part simply because I continue to believe, as I did on Second Reading, that the Mental Capacity Act 2005 was not written for this scenario.
Question put, That the amendment be made.
Question put, That the amendment be made.
Amendment proposed: 398, in clause 3, page 2, line 13, at end insert—
Question put, That the amendment be made.
Question put, That the clause stand part of the Bill.
Clause 3 ordered to stand part of the Bill.
“(1A) No registered medical practitioner may raise the subject of the provision of assistance in accordance with this Act with a person if that person has made an advanced decision which has been recorded in their medical records that they will not in future wish to seek assistance under this Act.
(1B) The provisions in subsection (1A) do not prevent a person indicating to a registered medical practitioner that they wish to change their previous decision and seek assistance under the Act if they have the capacity to do so.
(2) Other than the condition in subsection (1A),”.
This amendment would prevent a doctor from raising assisted dying with a patient if that patient had previously recorded an advanced decision that they would not in future wish to seek assistance under the Act.
Amendment 8, in clause 4, page 2, line 16, leave out from “practitioner” to end of line 20 and insert
“shall raise the subject of the provision of assistance in accordance with this Act with a person who has not indicated to that or another registered medical practitioner that they wish to seek assistance to end their own life”.
Amendment 124, in clause 4, page 2, line 16, leave out from “practitioner” to end of line 20 and insert
“shall discuss assisted dying with a person unless that matter is first raised by that person.”
The amendment prevents a registered medical practitioner from discussing the provision of assistance under the Act unless that matter is first raised by that person.
Amendment 319, in clause 4, page 2, line 20, after “person” insert
“who has attained the age of 18”.
Amendment 339, in clause 4, page 2, line 20, after “person,” insert
“, unless that person has a learning disability or is autistic, in which case—
(a) the person must be provided with accessible information and given sufficient time to consider it; and
(b) at least one of a—
(i) supporter, or
(ii) independent advocate;
must be present for the discussion.”
This amendment would require that, if the person is autistic or has a learning disability, they must be given accessible information and sufficient time to consider it. Additionally there must be at least either a supporter or independent advocate.
Amendment 368, in clause 4, page 2, line 20, after “person” insert
“, unless that person has Down syndrome, in which case the registered medical practitioner must be acting in accordance with any statutory guidance issued by the Secretary of State under the Down Syndrome Act 2022 to meet the needs of adults with Down syndrome.”
Amendment 320, in clause 4, page 2, line 21, after “person” insert
“who has attained the age of 18”.
Amendment 270, in clause 4, page 2, line 25, at end insert—
“(3A) Before conducting a preliminary discussion under subsection (2) the registered medical practitioner must ensure that the person has no remediable suicide risk factors which pose a significant risk to their life.”
This amendment requires that the doctor ensures that there are no remediable suicide risk factors before proceeding to the initial discussion about assisted dying.
Amendment 276, in clause 4, page 2, line 32, at end insert—
“(4A) A medical practitioner must not conduct a preliminary discussion with a person under subsection (3) until a period of 28 days has elapsed, beginning with the day the person had received a diagnosis of the terminal illness.”
This amendment would mean a doctor could not conduct a preliminary assessment until 28 days from the day the person received a diagnosis of the terminal illness.
New clause 6—Advance decision of no effect—
“An advance decision, made pursuant to sections 24 to 26 of the Mental Capacity Act 2005, which stipulates that the maker of the decision, having become incapacitated, wishes to be provided with assistance to end their own life in accordance with this Act, shall be null and void and of no legal effect.”
The new clause prohibits an individual from making an advanced directive for voluntary assisted death in the eventuality he or she were to become incapacitated at a future date.
A person’s ability to record their wishes now, as opposed to at some future crisis point, might allay a number of concerns, in particular for those who are fearful of coercion. Being able to say, “This is not for me”, and knowing that it will not be raised with them, might offer some people a degree of reassurance, so I think that the amendment has some merit. It also allows for such an advance decision to be reversed—it allows for people to change their mind.
What is not clear to me is how enforceable this provision would be, or what legal status such an advance decision would have. I have great sympathy with the aim of the amendment, so I am keen to hear from the Minister on the point. It may be that an alternative amendment that achieves a similar aim can be tabled to a later clause, if amendment 278, as drafted, is not workable.
The Down Syndrome Act was an important private Member’s Bill that sought to recognise the status of people with Down’s syndrome in society and to sensitise institutions to their welfare and wellbeing. Essentially, it provides that guidance should be issued by the Government to various institutions across the health service and civil society generally, that would be used to accommodate the needs of and be sensitive to dealing with people with Down’s syndrome, particularly as they reach adulthood.
Although I am sympathetic to the amendment’s aims, there are a number of issues with it. I think its objectives could be, and frankly should be, addressed in other ways. Essentially, my reading of the Down Syndrome Act is that it is aimed at institutions such as health trusts and local authorities, not at individual practitioners. Unfortunately, under that Act, which asked the Government to issue guidance on Down’s syndrome, no guidance has been issued. We have a rather good legislation website in this House that tells us whether a Bill has had an impact or had any effect. If we look up the Act on it, the website tells us that there has been no effect yet. Certainly no guidance has been issued.
I am concerned about the interplay between the Down Syndrome Act and this Bill. However, there are opportunities where we can recognise the particular needs of those with Down’s syndrome, who will often be life-limited because of their condition. That needs to be taken into account. Amendment 394, which refers to advocates, will be important from that point of view, and new clause 8, which will hopefully be agreed to—I will certainly be supporting it—includes a duty to consult in regulation. I invite the Minister to make a commitment in his winding-up speech that groups representing those with Down’s syndrome would be part of the consultation package. I am sure that that is perfectly doable.
Clause 30, which deals with codes of practice that the Government will issue, and clause 31, which mandates the chief medical officer to produce guidance for medics and some of the training that will be required, should include modules on dealing with individuals with Down’s syndrome. I do not know whether anyone is intending to press amendment 368, and I do think that there are problems with it, but my undertaking is to go away and talk to my right hon. Friend the Member for East Hampshire about what could be done, perhaps at a later stage.
My concern about new clause 6, which specifies that an advance directive would be inapplicable in the case of assisted dying, is that, as we discussed briefly at a previous sitting, advance directives are currently about the refusal of treatment. That is what they exist to do. Under the new clause, as in the Mental Capacity Act 2005, the effect of an advance decision would be that
“the specified treatment is not to be carried out or continued”.
However, under clause 18, the doctor must be satisfied at the time that the lethal substance is provided that the patient has capacity. I do not think that the new clause is necessary; it is otiose or even nonsensical, because the Bill already assumes that the patient has capacity at the very end. [Interruption.] The hon. Member for Spen Valley agrees with that point. I invite my hon. Friend the Member for Solihull West and Shirley to consider whether he wants to press new clause 6 at all.
On amendment 368, which relates to people with Down’s syndrome, I hear what my right hon. Friend the Member for North West Hampshire says. I strongly agree with him; I will make a couple of points and then respond to his suggestion.
I look forward to the points from the hon. Member for Spen Valley. I do not say this in a carping spirit, but it is relevant that the National Down Syndrome Policy Group opened its submission with a series of complaints about the process. The group feels that the consultation process has been rushed: we have not had the usual 12 to 16-week public consultation. It talks about limited professional and affected population engagement in the course of the drafting of the Bill, and a lack of accessible consultation materials; I mention that not to revisit the debate that we had about the process, but because it is a bad start. In the group’s mind, it is a harbinger of how the Bill might operate, and I understand why it thinks that.
The fact is that in our society we have persistent and entrenched discrimination against people with learning disabilities, particularly people with Down’s syndrome. There is a fundamental assumption that is too widely shared that the lives of people with Down’s are worth less than others’. One sees that, I am afraid to say, in the prevalence of prenatal screening and termination of Down’s babies. Yet we know from research that the lives of people with Down’s are as fulfilling, joyful, positive and constructive as everybody else’s. The most marvellous fact is that 99% of people with Down’s syndrome say that they are happy with their life, which I am sure is more than on this Committee and probably more than in the general population.
As a society, we serially misunderstand and degrade the value of people with Down’s syndrome. They are victims of the system, particularly in healthcare. People with intellectual disabilities died at rates three to four times higher than the general population during the covid crisis, often with inappropriately applied “do not resuscitate” orders put on them. The representation from the National Down Syndrome Policy Group was signed by 50 organisations, all representing people with Down’s syndrome, so it is pretty widespread.
Expert advice is that it is very difficult to spot coercion when dealing with people with Down’s syndrome. It is very difficult to ensure that one is getting informed consent. A point that has been made, in particular by the Down’s Syndrome Research Foundation, is that a discussion with someone with Down’s can often feel to them as if a suggestion is being made. That is particularly relevant to the whole question of a doctor’s suggestion, which we will come on to—well, we are on it now. Certainly the whole matter of how a person with Down’s syndrome receives information needs to be taken into account in any work that is done.
I will quote quickly from a submission that we have received from someone at the National Down Syndrome Policy Group, Fionn Crombie Angus. I am not sure whether Fionn has Down’s syndrome, or is perhaps a parent, but the point is a striking one, which we have not heard enough:
“I do feel very sorry for the people who are suffering, but I think the people left behind, the relatives, will be scarred for life if they help people die. That is the main reason why I do not want the Assisted dying Bill to become law.”
That is not specifically relevant, because we are not discussing whether the whole thing should happen, but it strikes me that there, from a member of the Down’s community, we have a point that goes to the heart of our discussion on the Bill: it is not all about the individual who is seeking an assisted death. More people are involved in the decision.
I made a point in an earlier debate about relational autonomy, which is very significant. That particularly applies to this group of people, who will be making decisions in the context of their family and the people around them, including the doctor who is talking to them. That is why it is particularly important to have a wider set of expertise and advice around people with Down’s.
My concern is that Bill, as drafted, thanks to the inclusion of clause 3 and its reference to the Mental Capacity Act, will assume consent and support people with Down’s receiving this intervention. It would have been best if we had accepted the amendments tabled by my hon. Friend the Member for Reigate and the hon. Member for Bexleyheath and Crayford to reverse the burden of proof. Failing that, we need to ensure that the job is done properly. Amendment 368, tabled by my right hon. Friend the Member for East Hampshire, would address that point.
Given the real concern that we have all discussed about the application of the Mental Capacity Act, it is important to have real expertise, time and attention on behalf of Down’s people with the role of an independent advocate. In particular, that should be someone who has expertise in end-of-life decisions for people with Down’s syndrome, which will be a small group of experts, so we might have to end up widening that, I am sorry to say. We need people with proper expertise.
I think the point that my right hon. Friend the Member for North West Hampshire made about the interaction of the Bill with the Down Syndrome Act 2022 was absolutely right. My understanding is that he is right that it applies to authorities, but it strikes me that the purpose of the amendment 368 would be to insist that the provisions of the Act apply in the case of individuals as well.
My right hon. Friend may be right that there could be complications, so it would be good to hear whether the Minister agrees with him that we should take this topic away, with the hon. Member for Spen Valley, and see whether the provisions in the amendment can be introduced at a later stage of the Bill or in statutory guidance. However, I would want to hear explicitly from the Minister that he is confident that what my right hon. Friend the Member for East Hampshire was trying to do when he tabled the amendment will be reflected properly at a later stage of the Bill. On that basis, I am happy not to press the amendment to a vote unless others feel strongly that we should proceed.
It goes back to our ongoing conversation about capacity. The current requirement does not cover psychological and social assessment.
Depression is a very common issue with terminal illness, and depression is strongly linked to a wish to hasten death. I apologise, as I know Members do not like it, but I have to refer back to the fact that we are talking about suicide. There is a reason why people commit suicide, or think about committing suicide, after they have had a bad diagnosis. I know that part of the purpose of the Bill is to relieve those people of the agonising obligation they feel to take their own life in brutal and traumatic ways. The fact is that we also know that suicide is most common soon after diagnosis, not shortly before death. It is more common immediately after diagnosis than later on, and people frequently come to terms with their diagnosis, receive treatment and recognise that the best thing for them and their family is for them to go on living longer.
I would like to quote from the written evidence that we received from a member of the Pathfinders Neuromuscular Alliance, which is a user-led charity for those with muscle-weakening conditions such as muscular dystrophy. This person said:
“I’ve been there, I’ve wanted to die, and I’ve been in the position where I would take that option if it was given to me”—
not if it was not. Interestingly, he would have taken that option if it was given to him, rather than suggesting that he was going to take his own life anyway. The quote continues,
“but looking back I can see I was depressed and now I’m so glad that I didn’t take that option.”
At the moment, the Bill does not require anyone to explore these psychosocial factors, and although the person can be referred to a psychiatrist—and, if we go on to accept the amendment, we would ensure that they must be if the doctor concludes that there is doubt—I do want to make a point about referrals. There is an assumption that the doctor will refer the person to a psychiatrist, but that will only happen if they have done their assessment well. We are assuming that they will do the assessment well, but we have heard repeatedly that such assessments are often not done well. I welcome the coming amendment—amendment 6—that says that if the doctor concludes that there is doubt about capacity, they “must” refer. That would be a step forward, but it is not sufficient. Even the psychiatrist will only answer the question, “Is this person able to make a decision?” That does not address any of these other factors.
In Oregon—we refer often to Oregon, and although this Bill is supposed to be the safest in the world, it is not as safe as Oregon in this respect—the doctors may refer the patient for counselling if the patient
“may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment”.
To conclude on this point, psychosocial care is fundamental to good end-of-life care. Members of the Committee have said that palliative care and assisted dying can complement each other; this assessment should be part of that picture, and it needs to come before the first declaration, because once somebody has signed that declaration they are already on the pathway—and there will not be an obligation on them to receive palliative care advice either, because we rejected that amendment. Amendment 270 provides for people’s needs to be met at the first opportunity.
Lastly, on the question of doctor-initiated conversations, I quote Professor Brassington, who submitted evidence to the Committee:
“In normal medical practice, the patient approaches the medic with a problem, and the medic suggests possible courses of action, not all of which would have been considered by the patient. The patient permits further action. But it is implicit that the practitioner who makes the suggestions thinks them good, and the patient is entitled to think that the practitioner endorses them all.”
In a normal scenario, the doctor would think about what is good for the patient. To raise an option is to endorse and encourage it, perhaps as one among a number of other options. It is to suggest that this is a good option—it might not be the one the doctor thinks is the best, but it is a good option for the patient; otherwise, they would not raise it. They can only make a recommendation for options that they consider would be appropriate to the situation.
It is interesting that clause 4(1) disapplies Montgomery and says that a doctor is not obliged to make this suggestion. That poses the question: is it therefore a treatment at all?
I will go back to Montgomery and make this point as clearly as I can. The Bill accepts that assisted dying is not an ordinary medical treatment, which is why I pressed the Minister on this question. Clause 4(1) disapplies the Montgomery case law, which requires, as part of informed consent, that the patient be informed of all appropriate options. Having conceded that assisted dying is not an ordinary medical treatment, the objection to a prohibition on doctors raising it makes little sense.
It is true that having such a prohibition would be unlike any other medical treatment, but the Bill has already crossed the Rubicon of saying that assisted dying is different from all other medical treatments, because in clause 4(1) it says that doctors are not obliged to offer it. It is either the case that they must offer it or they must not. There is no grey area. If they do not have to suggest it in any case, that implies that assisted dying is unnecessary in all cases and there no cases where it should be used. I would like to hear from any Member who has an answer to this: in what circumstances might it be appropriate for a doctor to suggest assisted dying?
“We support the Bill’s balanced position such that there is no prohibition on raising assisted dying with eligible patients where, in their professional judgement, the doctor considers this to be appropriate—but there is also no duty to raise it”.
The implication is that the Bill gets that balance correct.
I would challenge the BMA with the Medical Defence Union, which is the union that supports doctors in litigation. It points out, more correctly, that this is the worst of all worlds for doctors because they would be liable to complaints in either situation: if they do not raise it, a complaint can be made against them for not having done so; and if they do raise it, a complaint can be made against them on those grounds. We are being extremely unclear by leaving it entirely up to doctors. As I have said, it is not clear to me the circumstances in which it would be appropriate for a doctor to suggest an assisted death to somebody who has not raised it themselves. I would very much like to hear somebody tell me what those circumstances might be and to paint a scenario for us in which it is appropriate.
I go back once again to the difference between this and withdrawing treatment. I have to say this so many times because it is so important: this is not equivalent to withdrawing treatment because this is not specific to the illness being treated. A person can have a treatment or not, and that will address the condition that they are suffering from. The termination of life does not address someone’s symptoms, treatment, condition or illness; it kills them. It is a different order of intervention. I do not think it is a healthcare treatment at all, and it should not be treated as such.
Pat Malone—one of our witnesses in oral evidence—had a brother who had seen his father die under circumstances so horrible that he had begged his children to help him die. Then the brother got the same condition and could see what his death could look like. Does the hon. Member not value the choice that assisted dying would give that patient to take back control of what their death could look like, with their loved ones around them? This is a very real situation for, sadly, lots of people, and could be where that choice could be valid.
Let me wind up to the general satisfaction of the Committee with a couple of points about some other amendments. On amendment 278, which was moved by the hon. Member for Chesham and Amersham and tabled by the hon. Member for Wells and Mendip Hills—it is a very south and south-west debate—the suggestion is that if somebody has indicated in advance that they do not wish to have a conversation about assisted dying, the doctor will not raise it. That sounds welcome, but I am in fact afraid in practice that I think that this is quite simply an invitation to raise the idea if a declaration has not been made.
The absence of a declaration could well be interpreted as a willingness to have that conversation. Practically, how would it work? Would patients be informed of the need to make a declaration in advance of a doctor’s appointment? Would we all have to think, “Goodness, if I don’t make this declaration, the doctor might be suggesting an assisted death to me”? Should we all do that? Suddenly, we are having discussions about assisted death even before we see a doctor. All over the Mendip hills, people will be worrying that before they see a doctor, they had better sign a declaration.
To make a serious point, although the Bill is frequently framed as a choice only for the people who might take it, with no impact on the rest of society, my great concern is that it will actually impose an obligation on every family with a frail, elderly person in it. It will impose an obligation on all of us as we approach our end to consider whether we should take this option or not. It is not neutral in its effect on everybody. My concern is that amendment 278 will bring that home and make it even more explicitly required that we all consider whether we want to have an assisted death well before the time comes.
There is a challenge about making advance notices, and my strong suggestion is that we do not support amendment 278. I had better leave it there; I think we have all had enough of me—me included.
Another reason I tabled the amendment is that the Bill risks exacerbating the existing pervasive health inequalities. I am very concerned that biases, both conscious and unconscious, have the potential to significantly impact the treatment pathways offered to people, particularly those who fall under the nine protected characteristics of the Equality Act 2010. Medical practitioners have the potential to influence the treatment pathways offered to people, particularly those from those backgrounds, and I therefore see no reason why assisted dying would be offered as a treatment pathway.
I was thinking of the following example. Under maternity services, we also have abortion services. If someone presented themselves to a doctor and said that they were in the early stages of pregnancy, they would not be offered abortion as an option; they would be asked, “Do you want to have your baby at home or at a hospital? Would you like shared care between your GP and the hospital?” They would not be asked, “Would you like an abortion?” because that is not part of the pathway. For that to happen, the person would go to the doctor and say, “I am pregnant and I would not like to have this baby.” It is therefore important that the individual first approaches the doctor or clinician and says, “I am interested in an assisted death” or “I would like an assisted death.” Assisted dying should not be a treatment option, even if it is part of end-of-life care.
The doctor’s position is one of knowledge and expertise that far exceeds that of their patient, and that places them in a position of power and influence over their patient. Given that power imbalance, the doctor’s suggestion seems like a recommendation. If an individual chooses assisted death because it feels like a recommendation, that decision is no longer autonomous.
I will quote a GP, Dr Hannah Denno, who put in some written evidence. She cited her role as a GP as being one that needs her patients to take her words as guidance:
“I believe that in my role as a GP, to make such a suggestion”—
choosing assisted death, for example—
“would put pressure on some patients to accept it. At a time of vulnerability many patients are very sensitive to any suggestions raised by a health care professional.”
There are many examples of where we recognise that the weight of a doctor’s words carry a lot for the patient. If a doctor is offering a course of action, the expectation—rightly or wrongly—is that it might be in someone’s best interest to pursue that course of action. If that option is assisted dying, it is a suggestion to the individual. A strong feeling among many medical professionals, though, is that a suggestion is a recommendation. Any understanding of the doctor-patient relationship is that it is always about the wellbeing of the patient. To present assisted dying alongside other treatment options is therefore problematic. We can assume that people know about assisted dying and that it is an option open to them.
One of the healthcare professionals from California who gave oral evidence said that in California only a quarter of the population were aware that assisted dying was a legal option. It was a concern to the practitioner that they were unable to raise assisted dying first. However, it seems incredibly unlikely that that would be the case in England and Wales given the high-profile nature of the current proceedings and the significant change it would mark for healthcare services—it would be all over the news and everyone would know that there had been a change in the law.
Unlike in America, where the laws vary from state to state, the law would apply nationwide across England and Wales. It seems likely that citizens in England and Wales would be aware that some form of assisted dying is permitted, even if they are vague about the details. I anticipate that the long-term public awareness would be much like it is for abortion—the public know that it is lawful and they have an understanding that a person can get an abortion, but they do not actually know what exactly that all means or what the Abortion Act 1967 means. The fact that people have the knowledge that legal assisted dying is available in this country is enough for people to be able to go first to the practitioner to make the request.
My second concern about healthcare professionals first raising assisted dying as a care pathway is the potential impact on already known health inequalities. Across our healthcare systems, poor health outcomes for marginal groups are a pattern we have understood for decades. A report on black maternal healthcare states:
decades, but only recently received mainstream attention, since around 2018. That means that if there are disparities in the way assisted dying is offered if a patient cannot go to the doctor first, we will only know about them many years later. A safeguard is that the doctor does not approach the patient first.
The Committee has heard many times that during the pandemic disabled people were subject to DNR orders. Disability Rights UK says:
A Public Health England report on the early pandemic showed that adults with learning disabilities were over-represented by more than three times among those who died during the pandemic. Other people have said many things about the impact on deaf and disabled people and how they are treated. The UK Deaf and Disabled People’s Organisations’ Monitoring Coalition said that, if doctors are able to approach a patient first, the Bill presents
If we are to acknowledge the trend of health inequalities, we are presented with an unquestionable quandary when it comes to regulating assisted dying. People who fall under the protected characteristics, and those from less privileged backgrounds, may be more likely to be offered assisted death instead of more involved palliative care, whether that is due to unconscious bias, stereotyping or discrimination. By removing the option of a healthcare professional first raising assisted dying with a patient, we seek to alleviate the risks that already marginalised groups would be subject to with regard to assisted dying if a healthcare professional suggested it to them first.
To be clear, new clause 6 is a probing amendment that was tabled to air the debate on the record. I tabled it because of the interplay between the Bill as currently drafted and section 26(1) of the Mental Capacity Act, which sets out that a
“decision has effect as if”
the individual
“had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued.”
Of course, an advance directive relates to decisions around the removal of treatment. The mischief that I was seeking to address is that there are patients who, were this law to be enacted, would continue with their palliative care treatment right to the very end, before they chose to have an assisted death. Technically, there could be a scenario where that person, from the point at which they have gone through the two-stage assessment by a doctor and it is been approved by the panel—if that is approved in subsequent amendments—loses capacity after they have set out a desire to end their life through an assisted death, but there would be the option to remove the palliative treatment options at that point. There is a conflict in respect of an advanced directive that would enable the assisted death to take place, which would involve the removal of care.
“has made an advance decision which is...valid, and...applicable to a treatment...the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued.”
I am not suggesting for a moment that seeking an assisted death is conventional treatment in the normal sense, but there will be patients who seek an assisted death and have palliative care treatment along the way, so there could be a technical scenario whereby the palliative care treatment is withdrawn for the assisted death to take place.
There is an element of mischief in my probing new clause, but it is to air the matter in debate. In truth, intervention there are a variety of options with any withdrawal of treatment or any treatment. I wanted that on the record. I have had assurances from the hon. Member for Spen Valley that that is clearly not the Bill’s intention—in many ways, I am arguing against my own new clause. Of course, this is a distinct scenario from an advance statement—the much more proactive step of, “These are the treatments or options that I would like if I lose capacity at a future date”—which has no legal footing. An advance directive, in comparison, is very much concentrated on the withdrawal of care. I do not propose to divide the Committee on the new clause; I merely tabled it so that this could be discussed.
Let me turn to amendments 8 and 124. There has been much discussion and worthy debate on the position of Montgomery, which takes me back to my days as a pupil barrister grappling with issues of consent. I fear that we may be going down a rabbit hole in discussing Montgomery in this context. I agree with my hon. Friend the Member for East Wiltshire that an assisted death is not typical medical treatment in the normal sense of those words; it is a wider holistic medical intervention. Therefore, my understanding is that Montgomery would not apply in those circumstances.
However, some of the principles around Montgomery way well have justification. My concern about the amendments is that while it is quite right that there should be no requirement to instigate those discussions, it would be equally wrong not to allow the flexibility to have that conversation in appropriate circumstances. The reality of clinical practice is that there are consultations within consultations. A patient who comes to a surgery to see their doctor may not feel able to articulate what they truly feel. They may give subtle hints, which doctors pick up during the course of a long career—to put it in lay terms, doctors read between the lines.
There is interplay with the principles of Montgomery, which is clear that a doctor should discuss issues where a reasonable person in the patient’s position would attach significance to them or the doctor is, or should reasonably be aware, that that particular patient would attach significance to them. My hon. Friend the Member for East Wilshire asked for examples of that. There are scenarios where there are subtle hints from a patient who has been given a terminal diagnosis. They ask, “What is the implication of this terminal diagnosis? How am I going to die, doctor?” The doctor says, “There are variety of ways in which this may manifest itself” and goes through them. Some of them may be more tolerable to the patient than others.
Under the proposed amendment, the doctor would not be able to raise assisted death at that point, which is an option that is available if the law passes. It may not be an option that is palatable to some people, even after the debate—people may have, for very valid reasons, a moral objection or a principled objection to anybody undergoing an assisted death—but once it is on the statute book, it is an option for individuals. The danger is that we place our clinicians in an unenviable position. We cannot force them to have that conversation, but if the patient clearly indicates that they want it—they have indicated that they want to know the options available to them—where does that leave the clinician?
This is the issue I have particular concern about. In the scenario where that conversation arises, a patient has very clearly indicated that they want to know all the options available for how they would manage their death, and the doctor feels that is a cue, quite understandably and, in my view, rightly, to have a wider conversation that involves assisted death, along with other options, because he or she believes that the patient has indicated that that is what they wish. If we say that a doctor cannot have that conversation in any circumstances, we open up the clinician to the accusation, perhaps from a relative, who says, “Hang on a minute, doctor. My relative didn’t raise that with you. You raised it with them.”
These are very subtle and carefully balanced conversations. I understand where the amendment comes from, but without trusting in the judgment of clinicians, who know their patients well, we are setting them up to fail. We are setting the system up to be more clandestine. We are going to prevent what are very genuine and important conversations from taking place, because people are too scared of the operational framework that would be imposed on them. In those circumstances, we would put forward a Bill that does not function as intended. For those reasons, I will not support amendments 8 and 124.
Of the three amendments in my name, I come first to amendments 319 and 320. Clause 1 outlines that the legislation relates to a terminally ill person who
“is aged 18 or over at the time the person makes a first declaration”.
It does not, however, refer to the age that an individual needs to be at the time of an initial discussion in line with clause 4. The definitions in the Mental Capacity Act, which have now been agreed as part of the Bill, relate to those aged 16 and over. Given that we have now accepted that, I presume that the discussions referred to in clause 4 could be held with 16 and 17-year-olds.
I appreciate that there will be different views on the matter, in relation to autonomy, but I think that even some of the strongest supporters of the Bill will be uncomfortable with those conversations being undertaken with someone as soon as that person turns 16. My amendments seek to make sure that the Bill includes the strongest possible safeguards, by ensuring that the relevant aspects of the Bill relate to those who have attained the age of 18. Surely it would make sense that if a person has to be 18 to agree to the first declaration, they also have to be 18 to have the initial discussion.
I now turn to amendment 339, which stands in my name. As hon. Members know, this issue has been a great preoccupation of mine on the Committee. I know that my hon. Friend the Member for Penistone and Stocksbridge wishes to comment on the matter, and I am aware that there may be concerns about some of the wording in the amendment, but it was tabled following the oral evidence we received from Mencap and was, in the initial instance, in the wording that Mencap requested.
I remind hon. Members of the evidence from Mencap. Dan Scorer talked to us about two principal concerns, initially. One was about preliminary discussions, and how the initial conversation is initiated and structured is a key area that Mencap has concerns about. He said that for Mencap
“that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion…For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about ‘do not resuscitate’ or ‘do not treat’ decisions, and they were not being properly prepared for or supported in those discussions.”
He went on to say that Mencap wants to see
“a right to advocacy included within the Bill to support people considering their end of life options.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 269, Q350.]
We then move into the domain of amendment 8—tabled by my hon. Friend the Member for Blackpool South (Chris Web)—on initial discussions. As Dan Scorer told us, Mencap’s concern is about how discussions around assisted dying are initiated:
“For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures. Having a doctor come to you and say, ‘What do you think about assisted dying—is that something you might want to consider?’ could move them towards or into potentially accepting a course of action that they had never considered before.”
That is why he then went on to talk about advocacy supporting that discussion, saying:
“Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q355.]
In concluding, he said he felt that some of 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.’”.
He said Mencap’s position was:
“We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280, Q366.]
It is no secret that my greatest concerns relate to capacity and supporting those with learning disabilities. As well as my earlier two amendments, I will press my amendment 339; I hear that there may not be a vote on it. I also want to touch on amendment 368, in the name of the right hon. Member for East Hampshire (Damian Hinds), as it also feeds into the conversation about the initial discussions.
There are swathes of written evidence from the Down’s syndrome community. The written evidence supplied by Lucienne Davies from Get On Down’s states:
“There is an obvious worry about informed consent for people with learning disabilities. As a group we are fully aware that people with Down syndrome are extremely vulnerable to the intentions and suggestions of caregivers, health professionals and authority figures, informed consent is therefore a major concern in end-of-life decisions.”
The Down’s Syndrome Research Foundation UK also emphasised the issues that arose during the covid-19 pandemic, when
“we saw a deluge of temporary changes sweep away many safeguards and rights. During the pandemic, individuals with learning disabilities, including those with Down syndrome, had a death rate of six times higher than average. It is not known how much the actions of health professionals played into this, but there are some disturbing concerns.”
The Portsmouth Down Syndrome Association has listed a whole range of concerns. It says that standard practice has not been followed with this Bill. I know that the hon. Member for East Wiltshire has mentioned some of this, but the association’s evidence says:
“Typically, the government recommends a 12–16-week period for public consultations to ensure comprehensive input and discussion. This Bill has not adhered to this standard, compromising the depth and quality of the consultation process. Rushing the legislative process has led to insufficient public engagement, overlooking diverse societal values and ethical viewpoints.”
The evidence goes on to lay out concerns about vulnerability to coercion, challenges in assessing capacity, ethical implications, misinterpretation of wishes and an over-emphasis on disability.
The all-party parliamentary group on Down syndrome has provided us with a lengthy submission. Again, I will not go into great detail on it, but it mentions expert consultation, the legal requirements and the challenges in front of us, those medical capacity considerations, the vulnerability of individuals with learning disabilities, additional complicating factors and ethical challenges, and, again, the learning disability mortality rate.
My intention is to press the three amendments in my name, amendments 319, 320 and 339. I have concerns, as many people do, about the discrepancy between the wording in clause 4 and in later clauses, in relation to the age requirement of 18. I look forward to the debate on amendment 339, which relates to learning disabilities; other amendments on the topic may well come forward in due course.
We have heard very clearly the concerns from the Down’s syndrome community and from Mencap about learning disability and the role of advocates, family members and carers. It is incumbent on us to listen to that advice and ensure the strongest possible safeguards for the people who are most vulnerable in this conversation. We must ensure that those safeguards are in the Bill.
Before I get to the crux of why the Committee should support amendment 8, it may be helpful to spell out what it would do. Currently, clause 4(1) reads:
“No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this Act with a person.”
The amendment would change that to:
“No registered medical practitioner shall raise the subject of the provision of assistance in accordance with this Act with a person who has not indicated to that or another registered medical practitioner that they wish to seek assistance to end their own life.”
In a nutshell, that would mean that a doctor could not be the first person to raise assisted dying with a patient. The patient would have to raise it first, either with the doctor who had the initial discussion or with another doctor who referred the patient onward.
I urge Members to support the amendment, because it would provide another safeguard for vulnerable people. Many people affected by the Bill will be isolated; many will be poorly informed on medical matters and reluctant to ask questions of doctors.
As I was saying, many people will be poorly informed on medical matters and reluctant to ask questions of doctors. Many will have capacity under the Mental Capacity Act but, as we have heard from my hon. Friend the Member for Bexleyheath and Crayford, they will have greater capacity to take some decisions than others. For all those people, there is a danger that if a doctor raises this subject first, they will hear it not as a neutral comment, but as a suggestion. Not all of them will hear it as such, but some will.
Although not all expert witnesses who appeared before us endorsed that view, it is a concern that some raised. Others took a different view, such as the British Medical Association, which wants doctors to be able to raise assisted dying. It gave several reasons in its written evidence:
“Doctors should be able to talk to patients about all reasonable and legally available options…Doctors should be trusted to use their professional judgement to decide when and if a discussion about assisted dying would be appropriate, taking their cue from the patient as they do on all other issues…A prohibition would also create uncertainty and legal risks for doctors, which may inhibit effective doctor/patient communication and understanding.”
We cannot simply adopt or reject the amendment because of what the experts say. Instead, we must go through the arguments that the different experts made and consider which we find most convincing. It is our responsibility as legislators to make this decision. Personally, I found the voices raising concerns to be deeply convincing.
As with all this Committee’s inquiries, we must look at everything from the angle of safeguarding those who are vulnerable across society. For example, if someone is isolated, with very few close relatives or friends, and if they feel that they cannot challenge what the doctors say to them, they will be deeply trusting of or even dependent on their own doctor. That is not to say that we should be cynical about doctors, who are giving vital support to our most vulnerable citizens; it is to say that we have to look at the reality.
There is one kind of relationship between a confident and socially well-supported person and their doctor. For some who may lack confidence and have little or no social support, that relationship may well be very different. That point was repeatedly stressed by senior doctors who gave evidence to the Committee. We heard from witnesses that they do not think that this is a hypothetical danger.
Let me remind hon. Members of some of the expert witnesses who told us about the real risks posed. Dr Rachel Clarke, a palliative medicine doctor at Oxford, said:
“If, for instance, you say to a vulnerable patient who has just been told they have a diagnosis of terminal cancer, ‘Have you thought about assisted dying?’, I would suggest that stating it broadly like that is a form of pressure and that you are potentially unintentionally coercing that patient. 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?’ Autonomy is much more subtle and complicated than we assume from outside.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 75, Q93.]
Dr Rachel Clarke is a doctor who spends every working day with people who need palliative care. Her evidence cannot be laid aside. Dr Jamilla Hussain, who also gave evidence, is in favour of assisted dying in principle, but she raised significant concerns about the Bill as drafted, including on this issue. Dr Hussain said that her patients in Bradford have reduced access to palliative care, partly because they fear that doctors might try to end their life. She talked about how she worked with
“not only ethnically diverse communities, but those who are socially disadvantaged…I have taken this Bill to them and they have made it really clear—this is not just one community, but several, and I am not speaking on my behalf, but on theirs—that they are really fearful because this is what happened to them in covid. It affected everyone, but it affected some communities disproportionately because our services are not equitable. That could profoundly affect their healthcare, and not only in terms of end-of-life care. They are saying, ‘We will not even come to hospital ourselves, because we are worried that this would happen.’ This is not an academic or theoretical risk. We saw it happen in covid in Bradford. There were communities so worried that their loved ones were dying in hospital that they stayed at home and died earlier.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 190, Q247.]
Perhaps in some cases they died a death that could have been preventable. Dr Hussain said that it is “not a theoretical risk.”
Dr Hussain also said:
“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q259.]
That is what we need to do. We need to listen to what the doctors who are treating vulnerable patients say about the risks to those people.
We need to listen to what doctors who are treating vulnerable patients say about the risks to those people, and then we need to amend the Bill to reduce those risks. Bluntly, there is a choice here. The British Medical Association says that if the Bill becomes law, doctors should be able to raise the subject of assisted dying with patients. Palliative medicine doctors such as Rachel Clarke and Jamilla Hussain, who deal with this every day, are deeply concerned by that prospect, and they want us to avoid it. There is no papering over this: the doctors disagree and it is up to us—the Committee— as lawmakers, and this House, to decide which of them makes the stronger case.
I genuinely think that the BMA makes a strong case. There is no doubt in my mind that it is motivated by empowering doctors to give the best possible care to their patients. It is natural that the BMA looks at existing practice among doctors. Currently, doctors can discuss all possible treatments and pathways with patients—the key words being “possible treatments and pathways”—so the BMA makes the case that that should also be true for assisted death.
In the end, however, I cannot agree with the BMA for one reason: assisted dying will be qualitatively different from every previous kind of medical intervention that has been legally permitted in this country. We have never permitted doctors to legally assist patients to take lethal drug combinations with the sole purpose of ending their lives. Some things really are different from what has come before; if the Bill becomes law, assisted dying will be one of those things.
I accept that others may have different opinions, but I come back to the point that I made earlier: which case is more convincing? Do we raise the safeguards? Dr Jamilla supports assisted dying but she made it clear that, although she supports it for some people, who may well benefit from assisted death, the truth is that there are people who the Bill fails to protect. That is what I am speaking to, and that is what amendment 8, tabled by my hon. Friend the Member for Blackpool South, speaks to.
The Committee is talking about people who are facing the ends of their lives. On every day of their working lives, doctors who have spoken to this Committee talk to those people. They are treating exactly the kind of patients who may seek assisted dying if the Bill becomes law. They are deeply concerned that if doctors raise the subject of assisted dying with their patients it will, in too many cases, seem like a suggestion.
I appreciate that this is a private Member’s Bill and not a Government Bill, but that places an even heavier burden on us to get things right. We cannot ignore the testimony of those who have the most relevant experience. Too many Government Ministers, MPs and local councils from all parties, including mine, have done that in recent decades.
For example, the sub-postmasters and sub-postmistresses said for years that the Horizon system was not working, but Ministers from my party, and from the Conservatives and the Liberal Democrats, said that they were wrong. Time and again, they were dismissed. Ministers thought that they knew more than the people who were using Horizon on a daily basis. Now we know exactly who was right.
Similarly, for three decades, several thousand NHS patients, mainly haemophiliacs, claimed that they had been negligently given transfusions of blood infected with hepatitis and HIV. Minister after Minister, first from the Labour Government of the ’70s, then from the Conservatives, then Labour and then the Conservatives again, insisted that no such thing had happened. Some conceded that perhaps it had happened—but on a small scale. In 2017, to her credit, the then Prime Minister Theresa May announced a public inquiry into those claims. It turned out that the patients were right and the Ministers had been wrong.
That is what I am talking about. Several highly experienced palliative medicine doctors warned us—
Several highly experienced palliative medicine doctors have warned us that doctors raising assisted dying with patients would have two very harmful effects. The doctors said that it would scare patients away from palliative care, especially those from minority communities or disadvantaged backgrounds. They also warned that in some cases, if a doctor raised the subject of assisted dying with a vulnerable patient, that person would not hear it as a possibility being discussed; instead, they would hear it as a suggestion from a powerful person who, in some instances, they might be scared to challenge.
The question we have to ask ourselves is: are we going to be that Committee that ignored the evidence of the experts who deal with this issue on a daily basis on the frontline with those very people at the end of life who the Bill is actually aimed at? Or are we going to risk being part of a future assisted dying Bill scandal because we placed ourselves above those experts by supporting a view of a wider body? That body has very valid reasons—no doubt—from its own position but is not, in its entirety, a frontline delivery expert, as palliative care doctors are.
Those warnings are too stark for me—for any of us, I submit—to ignore. We cannot ignore the concerns that those doctors have raised. If any Committee member accepts the concerns of the experts, that a vulnerable person would not hear assisted dying as a possibility being discussed but instead as a suggestion from a powerful person, I sincerely hope that they will vote in favour of this amendment.
I turn to amendment 276, which I tabled. It would add a subsection to clause 4, which concerns the initial discussion between a person with a severe illness and a medical practitioner. This new subsection would impose a pause or an interval of 28 days between a person receiving a diagnosis and prognosis of the illness that might end their life within six months, and when they could speak to a doctor about assisted death. Currently, there is no such interval. I tabled this amendment in response to the concerns raised by several senior and experienced doctors in evidence to this Committee.
Several doctors who gave evidence—especially the psychiatrists—noted that a diagnosis of serious illness often leads to a major increase in depression and a desire to hasten death. However, on depression and the desire for death, the psychiatrists also said that when a patient gets treatment for their physical symptoms alongside social care and sometimes psychological treatment, that person may well change their mind. This amendment aims to prevent people from opting for assisted dying while they are suffering from the initial shock of having a serious illness diagnosed.
Let me talk in more detail about some of that evidence. In particular, I will bring the Committee’s attention back to Dr Annabel Price, vice chair of the liaison faculty at the Royal College of Psychiatrists, who has great expertise in this field. I will quote from her evidence at some length, because she talks very clearly about the evidence that we have about the effect of a diagnosis of serious illness on somebody’s mental health. Her evidence raises very important concerns about how the Bill, as it is written, would affect patients who have just received a diagnosis of serious illness. She said that
“if we think about people with palliative care needs towards the end of life—so the people who would qualify under this Bill—around 20% will have diagnosable depression, around 10% will have a wish to hasten death, and around 4% will have a more persistent wish to hasten death. Those wishes may not be expressed unless they are assessed for. One of the things that I would do in my clinical practice would be to look for treatable mental disorder in people who express a wish to hasten death.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 270, Q351.]
Dr Price went on to say:
“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275, Q359.]
Dr Price also went further and said:
“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275-276, Q359.]
I have quoted Dr Price at length because she sets out clearly some of the problems we need to address before the Bill will be fit for purpose. From her evidence, we know that when people receive a diagnosis of a serious illness with a prognosis that they may have around six months to live, that has serious psychological effects. We also know from her evidence that one of those psychological effects is what she called an increased desire to “hasten death”. She said that, in some cases, this means that the patient becomes “suicidal”, while in others it may not mean that the patient is suicidal, because they do not want to positively do something such as killing themselves, but they do wish that death would come to them sooner. It should be clear to us that a desire to hasten death will certainly be relevant to the decisions of any patient who wants a discussion on assisted dying.
Finally, and perhaps most importantly, Dr Price provided evidence that if a patient’s desire to hasten death increases immediately after the diagnosis of a serious illness, it is likely to decrease once several things have happened. In a psychiatrists’ survey of patients, they found that the desire to hasten death often decreased once the patient had time to reflect on their diagnosis and prognosis; once they had received adequate medical care; once they had social care to allow them to live their day-to-day lives and, in some cases, to relieve their isolation; or in some cases, once they had psychiatric support and adequate pain relief or intervention to relieve them of their pain. In practical terms, we have evidence that a patient who has just had a diagnosis of serious illness with a prognosis of possible or likely death within six months would be more likely to want to die.
As I was saying, in practical terms, we have evidence that in many cases, although not all, that desire will fall once a patient has had time to think through their diagnosis and once they have had good medical care for their illness or condition, and, in some cases, psychiatric support—a holistic package, perhaps even with social work intervention. Surely all Members would agree that we should give seriously ill people, who have just had such a shocking diagnosis and prognosis, time to think and to receive good medical care before they start the process of applying for assisted death. That surely applies to those of us who voted for the Bill on Second Reading every bit as much as those of us who voted against.
I will put it as plainly as I can: there is a significant risk from the Bill that people will be shocked by their initial diagnosis and prognosis, and, in that shocked state, will be more likely to apply for assisted dying. There is also evidence, however, that if they were to pause between the diagnosis and applying for assisted dying, they would be much less likely to have an increased desire to hasten death. This amendment would not be a perfect protection for people suffering from the shock of their initial diagnosis and prognosis, but it would be a clear safeguard that would protect many of them.
I want to make it clear that I was probably 60% against and 40% in favour of the Bill on Second Reading; I want to see a stronger Bill, with protections for the vulnerable. There is a significant group of vulnerable people who this Bill would put at increased risk—those who might take a decision to apply for assisted dying that, if they had had time to consider it and to receive medical and social care, many would not have taken. I ask hon. Members to support my amendment.
I will, however, not be supporting my hon. Friend’s amendment 339, merely because I am drafting something to strengthen those measures even further. My amendments will go beyond amendment 339 and amend the code of practice so that seeking advocacy and access to an appropriate adult applies across the pathway to those seeking assistance, not merely in relation to the content of clause 4, as in that amendment.
I want to ensure that access to an independent advocate or appropriate adult is expanded to cover those with autism, a learning disability or a mental disorder, which is not currently covered by amendment 339. That will enable those people to engage with any of the provisions under this Bill through the support that they would receive from an independent advocate or appropriate adult.
As I say, I am also seeking to strengthen access to such advocacy across the pathway, through seeking assistance at each stage. I have huge respect for my hon. Friend, but I want to make sure that we specifically include the language of “mental disorder”, to make sure that that particular group of people with mental health problems is able to access independent advocates, as well as those with learning disabilities and autism.
I am also looking at whether we need a consequential amendment or new clause that would make the Secretary of State put in place provisions for regulations as to the appointment of persons as independent advocates in order to ensure that those seeking assistance under the legislation who have a learning disability, autism or a mental disorder can have proper access to such advocates. That would strengthen the resource provision and access for that group.
I have worked closely with Mencap on the amendments that I am drawing up and will continue to do so, and I would welcome input from my hon. Friend the Member for Bexleyheath and Crayford. Although I support his intent in principle, I will be tabling amendments to cover a broader group of individuals to access such appropriate adults and independent advocates, so that they can seek and access advocacy across the pathway and period of seeking assistance. My amendments would put access to appropriate adults and independent mental health advocates on a much firmer footing in the Bill.
“a clear, settled and informed wish to end their own life,”.
Amendment 270 seeks to establish that the wish cannot be clear or settled if there is any doubt about whether the person has a suicidal intention instead of seeking an assisted death on the basis that they have a terminal illness. In its current form, the Bill does not require a structured assessment of whether a patient is experiencing remediable suicidal risk factors, such as treatable depression, external pressures or suicidal ideation, before assisted dying is discussed.
In the oral evidence, Dr Mulholland said that most people with depression, anxiety and other mental health problems “would have capacity” under the Mental Capacity Act because it would be presumed. It is not necessarily an obstruction to people being referred for anything. It is an important point that someone can have depression and that it can lead them to have suicidal thoughts, but under the Mental Capacity Act they would still be assessed as having capacity to decide that they wanted an assisted death.
What is really important is that we have, over some years in this country, developed a suicide prevention strategy. I am sure that every Member in this room has had constituents approach them, as I certainly have, about family members who have committed suicide, where they were able to identify factors that made that suicide preventable. That is why it is so important that the suicide prevention strategy has been developed and continues to be developed, and why leading figures associated with that strategy—and with suicide prevention more widely—are concerned that a Bill for assisted dying may undermine suicide prevention strategies. We should take every care to prevent that in this Bill.
The current UK suicide prevention strategy cites early intervention as a priority to implement tangible actions aiming to reduce the risk factors of suicide. In line with that strategy, amendment 270 provides early intervention that aims to identify the symptoms of suicidality in a patient before the initial discussion about assisted dying can take place. At the bare minimum, someone who is severely suicidal will not be allowed to enter into conversations about receiving an assisted death.
It is important to reflect that suicidal ideation is not the same as a settled wish to die. Evidence shows that when mental health issues are treated, many patients no longer seek to end their life by suicide. Dr Price, in the oral evidence, said that 20% of terminally ill patients experienced depression, which is strongly associated with the wish to hasten death. When depression is identified and treated, the wish to die often diminishes. It is so important to distinguish and make provision for those people who are experiencing a wish to die as suicidal ideation, as opposed to the
“clear, settled and informed wish”
specified in the Bill.
Research from the Office for National Statistics, King’s College London and the University of Manchester suggests that people diagnosed with a physical terminal illness are at an elevated risk of death by suicide, because of an increase in the psychological distress that can lead to severe depression in many patients, but data from the study shows that it is a more pronounced risk of suicide in the first six months after diagnosis or first treatment and, on average, suicide rates in the first year after a terminal diagnosis were 21.6%. Of course, it is important to reflect on the fact that a diagnosis of a terminal illness can take place some years in advance of the actual prognosis that the person’s death may occur. We are looking at a group of people who are within six months of their death as far as can be established by what is, as we know, uncertain prognosis—yet the incidence of suicide among those with a terminal illness is much more weighted towards those who have just received a diagnosis. These, of course, are not the same group of people; there may well be overlap, but they are definitively not the same.
Evidence on the gov.uk website suggests that
“over half of men aged 40 to 54 who died by suicide had a physical health condition.”
We know that having a physical health condition or any kind of terminal illness has an impact, and that evidence demonstrates the impact that poor physical health has on mental wellbeing. We know that thereDr Louis Appleby, a psychiatrist who leads the national suicide prevention strategy for England and directs the national confidential inquiry into suicide, has expressed concerns that the Bill fundamentally undermines the basis of the suicide prevention strategy. Identifying and diagnosing capacity and mental disorders are easy to put down in writing, but in practice it is much harder for professionals to make a correct judgment straightaway. Where we do not want someone to die, we intervene by offering mental health support, crisis services and what we hope is a comprehensive suicide prevention strategy, but for those who qualify under this Bill, instead of that suite of support, we allow them to progress straight into discussion to end their life.
It is really important that we have had a debate today about how the discussion should be initiated and the appropriate way to do that, but what is important about amendment 270 is that it takes into account the specific factor of suicidal ideation. It would mean that whatever the outcome of the decision about how the conversation should be initiated, the possibility that the person wishes to commit suicide is nevertheless taken into account.
There are many ways in which patients can ask about all the options available, and we have to be able to say what they are. We cannot miss out one option because we are not allowed to say it. That is a very unhealthy doctor-patient relationship. If we want to foul up the doctor-patient relationship, this is a good way of doing it.
On Amendment 278, I actually agree with the Member for East Wiltshire, but probably for different reasons. Again, if we introduce the amendment, if the doctor does not see that a patient has said that they do not want assisted dying and they bring it up, the Bill will potentially criminalise their behaviour. I feel that would not work and it would complicate the law.
I agree with amendments 319 and 320, tabled by my hon. Friend the Member for Bexleyheath and Crayford, which concern age. They would be a good and—alongside his amendment 339—functional change to the Bill.
Amendment 270 is about psychological assessment. As far as I can read in the Bill, as part of the panel process, which we have not yet discussed, there will be a psychological and psychiatric assessment of the patient. Also, when assessing someone with a terminal illness, most doctors will assess their mental health.
Finally, I will address new clause 6, which is a probing amendment tabled by the hon. Member for Solihull West and Shirley. One danger in this Committee is that if we continuing to build and embroider the Bill, it will be very difficult to use. I do agree that someone has to have capacity at the time they take the medicine that will end their life, but I see where the probing amendment is coming from. We need to be careful that this remains a practical and workable Bill by the end of our deliberations.
Ordered, That the debate be now adjourned.—(Bambos Charalambous.)
TIAB 406 Pro Life Nurses UK
TIAB 407 Association of Palliative Medicine of Great Britain and Ireland (APM) (further written evidence)
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