Terminally Ill Adults (End of Life) Bill (Twenty-sixth sitting)

Debate between Lewis Atkinson and Naz Shah

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Lewis Atkinson]

In considering the offer of any health or care-related activity, the appropriateness and suitability of the place is always in people’s mind, and clearly that varies. As I mentioned yesterday, we already have a licensing regime under which the CQC specifically licenses places for particular activity. I think my hon. Friend is right, but this is a normal part of decision making in the provision of health services and I do not think we should try to constrain it in primary legislation. However, as I started by saying, I recognise that we must enshrine the rights of individual conscientious objectors, which I think the hon. Member for East Wiltshire is trying to do with amendment 480, and I hope that we can do that, through some route, with the Bill.

[Naz Shah (Bradford West) (Lab)]

I rise to speak to amendments 441 and 484, tabled by my hon. Friend the Member for York Central (Rachael Maskell), and in support of new clause 23, tabled by the hon. Member for Reigate.

Amendment 441 would amend clause 23 so that there would be

“no obligation on any care home or hospice regulated by the Care Quality Commission or the Care Inspectorate Wales to permit the provision of assistance under this Act on their premises.”

I think it is clear that “assistance” in this context means the act of administering lethal drugs. That is the sense in which the word is used in clause 18, for example.

Amendment 484 would tighten that restriction somewhat by providing that there is no obligation on any hospice to permit

“any activity closely related to the provision of assistance under this Act”.

New clause 23 would also apply to all regulated care homes and hospices in England and Wales. It would provide that none of those organisations can

“be subject to any detriment by a public authority as a result of not—

(a) providing assistance in accordance with this Act, or

(b) permitting such assistance to take place on their premises.”

The new clause would also provide that no public authority can make its funding for a regulated care home or hospice dependent on the care home or hospice agreeing to provide assisted dying or to allow assisted dying to take place on its premises.

All the amendments have the same goal: to ensure that the Bill does not harm this country’s hospices. We have heard from many witnesses how much hospices do in providing palliative and end-of-life care. Caring for people who are close to the end of life is difficult and vital work. The people who do that on our behalf include some of the very best in our society. We should all hold ourselves responsible for not making the task of hospices more difficult. The idea that the Bill might do that has been raised with us by people working in this country’s hospices.

Hospice UK takes a neutral position on whether assisted dying should be legal in England and Wales, but it has set out clear positions on how the Bill should and should not affect hospices. On funding, its written evidence TIAB 36 states:

“If assisted dying is legalised and becomes part of the health service, steps should also be taken to ensure there is no financial detriment to any hospice, whatever their positioning on the practice.”

I agree strongly with that argument, for several reasons. The hospice sector in this country receives a mixture of public funds and private or charitable money, including donations and the proceeds of charity shops and fundraising events. Like the rest of the population, the people who work in and run hospices have a mixture of views on assisted dying. Many have strong objections on various grounds. If public funds were made dependent on hospices agreeing to assisted dying taking place, we would see several things happen, all of them bad.

In evidence to the Committee on 28 January, Dr Sarah Cox, a consultant in palliative care and president of the Association for Palliative Medicine, said:

“I am also concerned about our palliative care workforce, which we know is already in crisis. Eighty-three per cent. of our members told the Royal College of Physicians in 2023 that they had staffing gaps, and more than 50% were unable to take leave because of those staffing gaps. Forty-three per cent. said that if assisted dying were implemented within their organisation, they would have to leave. This has a massive impact on palliative care, in terms of its potential to develop both our funding and our workforce, who are really concerned about this.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 70, Q83.]

In evidence to the Committee on 29 January, Toby Porter, chief executive officer of Hospice UK, said:

“If hospices were involved in assisted dying, there is a theoretical risk that that would just reinforce an inaccurate perception about hospice and palliative care: the myth that you are helped along your way by doctors in hospices and hospitals. That is one risk.

More briefly, the second risk relates to the duty of care. What do you need for hospice and palliative care services? You need adequate resourcing, which means staff and finances. In terms of staff, the real fragility in the hospice and palliative care sector is a shortage of clinical staff—that is shared nationally with the NHS and other healthcare providers.”

Mr Porter also mentioned the evidence of Dr Cox. He told us:

“You will know from Sarah Cox’s evidence that the majority of palliative care consultants hold views against assisted dying, many of them very strongly. If the consultants felt, for example, that they could not keep their distance from assisted dying in a 12-bed hospice unit in the way they could in an 800-bed hospital, you could very easily see that if this was not done properly and the consultants deserted the hospice sector, you could no longer offer the specialist care that is so important to the Minister, the NHS and every health and social care provider.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 196, Q256.]

Many people would be entirely willing to enter a care home or hospice if they thought they might receive assisted dying there, but others already fear that they might be pressured into taking assisted dying if they enter palliative care. They may be wrong to fear that, but they do. We heard evidence on that point from Dr Jamilla Hussain, who gave evidence to the Committee on 29 January:

“I work predominantly with an ethnically diverse population. I have gone into those communities and I have spoken to them about this Bill. What they say overwhelmingly to me is, ‘We’re scared. We’re really fearful that this is going to result in a disproportionate impact on our community. We have seen that through covid and we’re so scared. We already don’t access your services. We’re really worried that we won’t want to access them any more, and we won’t want to access the hospitals.’”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 187, Q245.]

That fear will only grow if we use public funds to oblige hospices to permit assisted dying on their premises. Hospices should be able to say clearly to their patients that they do not allow assisted dying to take place on their premises. The dedicated professionals who work in hospices and who deeply object to people being helped to die with lethal drugs must also be protected. They should be free from having to work on premises where something they might disagree with happens.

I anticipate that some hon. Members may argue that amendment 484 draws its restrictions too tightly. They might argue that it would mean that a doctor working on a hospice’s premises or making a visit to a patient in a hospice could not have the preliminary discussion about assisted death with that person. However, I want to be clear that these measures relate to the provision of assistance under this Bill. “Provision of assistance” is the phrase used throughout the Bill to refer not to the preliminary discussion, nor to the interviews with doctors, nor to the panel process, but to that part of the process at which the person takes lethal drugs with a doctor present.

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[Lewis Atkinson]

I just want to nail this point about employers and recruitment. We have said that no organisation will be obliged to provide these services, in exactly the same way as with abortion. The example I would give is this: a provider of women’s services says, “We are not providing abortion. But, in addition, we are going to ask staff members we are recruiting if they believe it is ever legal for abortion to take place.” That is exactly the same test of belief, although on a different medical procedure, that my hon. Friend is proposing in this instance.

[Naz Shah]

That is not what I am saying. I am saying very clearly that when we recruit people to any job, we ask them to have the values that we have as an organisation. I appreciate my hon. Friend’s intervention, but what he says is certainly not the point I am trying to make, and I cannot imagine anybody—even for religious reasons, and even if they have changed their position—genuinely treating somebody in that way. We just do not do that.

Terminally Ill Adults (End of Life) Bill (Twenty-third sitting)

Debate between Lewis Atkinson and Naz Shah

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Lewis Atkinson]

I thank the hon. Member for that point, but when someone cannot describe any version of safeguards that would be possible, and in the light of some of the other conversations we have had, one is led to believe, entirely respectfully, that some people are opposed to the Bill in principle in any instance.

The point that my hon. Friend the Member for Spen Valley made on Second Reading that this was the safest model in the world was not just about the fact that there was a judge, but about the fact that there was a third tier. That is not something that is in place in Oregon, or even in Australia, as we heard in evidence. Now, not only are we going to have a third tier of scrutiny, but we are going to have three professionals who must unanimously accept that the strict conditions for eligibility have been reached. I absolutely refute the suggestion that amending away from a High Court model and towards a panel model means that we have to recant any suggestion that this is the strongest model in the world.

[Naz Shah]

Will my hon. Friend give way?

[Lewis Atkinson]

I am going to continue this point, if I may.

The hon. Member for East Wiltshire asked what the purpose of the panel is. As is set out very clearly in new clause 21, it is about determining eligibility for assistance, with reference to the stringent rules and conditions that we will lay out in the Bill. The hon. Gentleman went on to ask about the purpose of the judge and suggested that it is a bureaucratic role. As new clause 14(4)(c) makes clear, the commissioner’s role is making arrangements for panels, and new schedule 2 is clear that the commissioner has powers to give guidance about the “practice and procedure” of those panels. Clearly, the commissioner will be a judicial figure with experience of proper process and procedure, and it is absolutely right that that person, who will set out the procedure for each of the panels, is a judge.

The hon. Gentleman made a point about MDTs. I am not sure whether he has worked in or around healthcare, as I and other members of the Committee have, but I say gently that the suggestion that individuals at the end of their lives are not in contact with multiple professionals is highly implausible. We are blessed in this country that we have some of the best cancer nursing in the world, and that we have palliative care social work. He previously asked which bodies had come out in support of this change. Well, the Association of Palliative Care Social Workers says:

“The inclusion of social workers as core members of these panels shows that Kim Leadbeater and her colleagues have taken on board our arguments that social workers are uniquely qualified and equipped to undertake the complex and sensitive tasks of assessing mental capacity and safeguarding individuals who may be subject to any form of undue influence or coercion.”

[Naz Shah]

Will my hon. Friend give way on that point?

[Lewis Atkinson]

No, I am in a flow, so I am just going to keep going. I am mainly rebutting at this point, and I do not want to open the debate that much wider.

Invariably, we already have individuals at the end of their lives with multidisciplinary input that is appropriate to them, and we have heard already how the independent doctors and the panels will rightly seek input from all those involved in care.

It has been some time since the hon. Member for East Wiltshire and I had an exchange on our difference on the ventilator test, but I know that we have a fundamental, philosophical difference on that. I believe that a dying person saying, “Please, doctor, turn off my ventilator; I want to die,” is not fundamentally different from that person saying, “Please, doctor, let me take that medicine; I want to die.” I assert that the person in the street is closer to my view of that situation than to his, although I respect that people have different philosophical opinions about it. However, let us not forget that we sometimes conduct this debate about the correct oversight of the third tier in a theoretical manner, as if these people were not dying anyway, and as if deaths relating to refusal of treatment, and suicide, were not happening anyway.

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

Debate between Lewis Atkinson and Naz Shah

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Lewis Atkinson (Sunderland Central) (Lab)]

I will be brief. I am pleased to hear my hon. Friend the Member for Spen Valley confirm that she is minded to support amendment 341. It is incumbent on all of us, but perhaps particularly those in favour of the Bill, to place on record our appreciation and recognition of the fact that many people who work in our health services have strongly held religious beliefs, or beliefs of conscience—however they are motivated. As is the case for a range of other procedures and medical interventions, the law has to allow them scope to continue to practise. They make a valuable contribution to our health service and national life, and we should not do anything to impinge on that.

There is already strong guidance from the General Medical Council about personal belief, and that applies, as the hon. Member for Reigate mentioned, to the Abortion Act, as well as to the Human Fertilisation and Embryology Act 1990, the Female Genital Mutilation Act 2003 and other procedures. It is not for any of us to second-guess someone’s conscience.

[Naz Shah]

I would like to add that there is nothing about female genital mutilation in anybody’s religion. It is not a religious belief; it is cultural, and it is actually child abuse. That is what it is—there are no ifs or buts about it.

[Lewis Atkinson]

I do not disagree with my hon. Friend. I gently say that the GMC guidance specifically references that Act, so that is what I was referring to.

I am pleased to see amendment 341, which I believe would bring the legislation into line with that GMC guidance, ensuring that removing the duty to refer would absolutely not be a licence for people to be left without access to care. The GMC is very clear, as the hon. Member for Reigate said, that people must be given sufficient information and be empowered to seek the options and information that they need. Therefore, I am pleased to support the amendment.

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

Debate between Lewis Atkinson and Naz Shah

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Lewis Atkinson]

I will be brief, as I am conscious that the Committee needs to make progress. I will speak briefly to amendment 275 in my name, which, as others have said, amends the current reference of “any available” to “all appropriate”. Listen—people at the end of their life deserve the best. They deserve to know about and have the option to access all appropriate care. In my experience of the NHS, that is exactly what clinical teams ensure patients get. But we need to guard against any suggestion that the information given should be somehow filtered around availability, which I know is not the intention of my hon. Friend the Member for Spen Valley.

In my experience, views on availability are often incorrect anyway, so ensuring that “all appropriate” options are offered in information is the best thing to do. If nothing else, it creates a level of societal pressure to ensure that all appropriate care is available, which I hope we can all support.

[Naz Shah]

Will my hon. Friend give way?

[Lewis Atkinson]

No, I am going to make some progress because I am conscious of the time, and we want to get through these provisions.

I want to speak in favour of amendments 108 and 183. Those two amendments, taken together with amendment 275, create additional safeguards and assurances on the points made by colleagues on Second Reading that this is not cannot be raised in isolation—as my hon. Friend the Member for Spen Valley has made clear should not be the case—and that referral should always be offered to specialists in palliative and wider care.

As others have said, those patients will almost undoubtedly be in touch with a variety of different multidisciplinary healthcare teams. The suggestion that there must be a further referral to another multidisciplinary team under the Bill, regardless of which teams an individual is seeing, is therefore not appropriate. I also refer Members to amendment 6 to clause 9, which states that a referral to a psychiatrist “must” be made. My hon. Friend the Member for Spen Valley has indicated that she is in favour of that amendment. That reinforces the fact that there will be a multidisciplinary approach, including psychiatric input, where there is any doubt before the third-tier stage of the panel.

For those reasons, I do not feel the other amendments—285, 343 and so on—are necessary. By accepting amendments 275, 108 and 183, we will be able to strengthen the Bill in the way that was set out to the House, and as we heard in oral and written evidence.

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

Debate between Lewis Atkinson and Naz Shah

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Naz Shah]

My hon. Friend makes a very valid point. Another issue that we have not got to yet, but that we will be looking at, is the doctors who do not want to take part in this process. We must consider whether there will be a bias; he is right to point that out. Will there be a subconscious bias towards helping people? My hon. Friend the Member for Stroud suggested earlier that doctors assist a person to reach a decision, according to the Mental Capacity Act. This is the crux of it for me: when a doctor is assisting a person in their best interests to come to a decision about treatment, for example, that is a different test from what we are testing here.

[Lewis Atkinson (Sunderland Central) (Lab)]

I share the concerns of my hon. Friend the Member for Bexleyheath and Crayford about the use of DNRs—what happened during covid to people, particularly those with disabilities, was a disgrace. Does my hon. Friend the Member for Bradford West accept that this is an entirely different situation, however, in that people must actively seek it, be tested multiple times, and express a wish for it? The situation with DNRs involved medical professionals making decisions on behalf of a patient without their input.

[Naz Shah]

I thank my hon. Friend for his intervention. I will be speaking to that in the next group of amendments, so I do not want to go through it in detail now, but I absolutely accept that that was a disgraceful situation—

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

Debate between Lewis Atkinson and Naz Shah

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah (Bradford West) (Lab)]

Before we adjourned, I was talking about the two obvious problems with amendment 181. The first is that it would remove references to the Equality Act 2010 and the Mental Health Act 1983, which previously defined who did or did not have a disability or mental disorder. The amendment would remove those definitions, and the Bill would not define disability or mental disorder. What definition would medical practitioners, and indeed applicants, use to determine who does and does not have a disability or mental health disorder?

I appreciate that, as my hon. Friend the Member for Spen Valley explained, that was done on the basis of advice she took to remove the references to the Equality Act because people with cancer could also declare themselves to be disabled people. However, that leaves a real opening, which weakens the clause even further. I cannot understand why we would remove one clear definition but not provide a replacement. That is a serious concern.

However, there is a bigger problem with the clause as it would be changed by my hon. Friend’s amendment. In referring to someone who could not be disqualified from assisted dying, the clause would still use the word “only”—again, I emphasise the word “only”. That leaves the door open for individuals with mental health disorders or disabled people to qualify for an assisted death based on the physical consequences of their condition. If the goal is to prevent people with mental illness or disabled people from qualifying, this amendment fails to do that. It weakens, rather than strengthens, the Bill’s safeguards.

As we heard in oral evidence, there are now 60 documented cases of individuals with eating disorders who have died by assisted death internationally.

[Lewis Atkinson (Sunderland Central) (Lab)]

Does my hon. Friend accept that nearly all those cases were in jurisdictions whose schemes bear no resemblance to the one proposed in the Bill?

[Naz Shah]

I accept that the majority of those 60 cases are in such jurisdictions, but to me it does not matter whether it is the majority or one—one death is too many, as I am sure my hon. Friend will agree. In Oregon, the evidence was that it was two, but it is also important to reflect on the fact that Oregon does not record these things. There is no record of the people who had anorexia—by and large, it is women—and who felt that they fit the criteria for assisted death, or that they were on a trajectory to fit it, because they had decided not to eat. So we cannot exactly rely on the two cases that have been found—and those were found only because of the research that was carried out. That does not quite satisfy the question.

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[Naz Shah]

My hon. Friend is making a powerful speech, and I agree with what he says about autonomy. As I said earlier, autonomy does not necessarily have to lead to pain, and it could be that I do not want to get to that stage. People will never know whether they could have lived longer. Does he not agree?

[Lewis Atkinson]

Sensible amendments have been tabled elsewhere in the Bill—not to the clause that we are debating—that would strengthen the initial conversations and ensure that people make informed decisions and have access to, and conversations about, all the forms of support, psychological or otherwise. I think that those will address my hon. Friend’s point.

In terms of the eligibility criteria, Chris Whitty was clear that there is diagnostic uncertainty in both directions. He said that

“a significant minority of people die before they actually get to the point”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q15.]

of the six-month prognosis. Because of that uncertainty, if we attempted to make the criterion much less than six months, we would end up excluding people. From all the conversations I have had, it is clear that once people have a terminal diagnosis, they want to put their affairs in order; doing so means that they can enjoy their final months with their families. We must not reduce eligibility and limit access to those whose disease unfortunately progresses more quickly than they would like and the prognosis suggests. I therefore oppose amendment 48, in the name of my hon. Friend the Member for Bradford West.

The amendment talks about “recommended treatment”. In all my years in the NHS, shared decision making has been a key principle. No one other than the person in question can make the decision about what trade-off they are willing to accept. Invasive chemotherapy may have a 20% chance of elongating my life. Am I willing to accept a 20% chance? Am I willing to accept a 30% chance? What I decide is right for me may be different from what other individuals decide, so a doctor is not in a position to say, “You should accept this because it will give you a 10% chance,” or, “It will give you a certain level of pain that I’m willing to accept.” We each have to make those decisions ourselves.

[Naz Shah]

Will my hon. Friend give way?

[Lewis Atkinson]

No, I will make some progress.

I feel that the amendment risks pressuring people to accept courses of intervention against their will, and I do not think it is consistent with the important principles of autonomy and consent. Because of the safeguards, approvals and reflection periods built into the Bill, going through the process of approval will clearly take in excess of a month. That is why amendment 282, in the name of my hon. Friend the Member for York Central, which would limit the eligibility to one month, is fundamentally not compatible with the safeguards in the Bill, as my hon. Friend the Member for Spen Valley made clear. To me, six months is absolutely the right balance. It reflects people’s wish to put their affairs in order and allows for prognostic uncertainty on the downside—someone given six months may actually only have two or three months to live—but it still allows the operation of robust safeguards and reflection periods.

I turn briefly to the other amendments. I commend my hon. Friend the Member for Broxtowe for the points she made. I share the concern that replacing “inevitably” with “typically” would risk weakening the definition of “terminal illness” and expanding access to other conditions. I fear that “typically progressive” is a weaker interpretation, so I cannot support the change, because I support a tightly drawn Bill with tightly drawn eligibility criteria. For the same reason, although I have sympathy for the amendment tabled by the hon. Member for Harrogate and Knaresborough, I think it goes beyond the scope of what the House discussed in November and the contours of the current debate.

Amendments 9 and 10 refer to disease being controlled or substantially slowed. Those are not recognised medico-legal terms. What is the definition of “substantially slowed”? Who would define it? Is it something that takes 20%, 50% or 100% longer? We talk about the risk of inserting undefined terms and of court interpretation, and I fear that introducing such an amendment would give rise to that.

The people best placed to make decisions about whether the treatment will suitably slow the progression of the disease are the dying people themselves. They are the only people who should do that—fully informed, of course, by their medical and clinical teams. Each of us, when the end is nigh—it will come to me, as it will to us all—has to make that decision ourselves, not on the basis of a recommendation mandated in law or some definition of “controlled” or “substantially slowed”. It feels that the legislature would be putting in primary legislation decisions that I should make about the treatment that I should accept, so I am not in favour of those amendments.

I finish with reference to amendment 402. Although earlier I wanted to make progress, I do not want to rule out any further interventions, if my hon. Friend the Member for Bradford West or others would like to come in. I recognise the concern, and we need to talk about people with anorexia with the respect, dignity and seriousness they deserve. I have heard it said—I think my hon. Friend said it—that there is nothing in the Bill to stop that being the case, and I fundamentally disagree for many reasons. First, as the Bill sets out, capacity is checked eight times. The Court of Protection has repeatedly found that people with anorexia do not have the capacity to make decisions about stopping eating. Although a best interest test may have been made, that is not relevant, as set out in the Bill. People have to have the capacity to request an assisted death, checked eight times. My hon. Friend the Member for Spen Valley has already set out that she is minded to accept—or will accept—amendment 6 to clause 9(3)(b), so that, if there is any doubt about capacity, a psychiatric opinion “must” be sought.

Like my hon. Friend the Member for Bradford West, I considered the written evidence saying that, in instances of a patient with anorexia, psychiatric input is absolutely necessary. Absolutely—in every case where someone has anorexia, under an amended clause 9, psychiatric opinion must be sought as to capacity. That is before we get to the further set of amendments to clause 12.

[Naz Shah]

In the cases that went before the court, the judges, in nine out of 10 cases, found that all those young ladies did indeed have capacity to refuse their food, and it was as a result of that that their deaths became inevitable. Will my hon. Friend comment on that?

[Lewis Atkinson]

That is not my understanding, and I have sought some clarification, including from Professor Hoyano, who provided oral evidence to us, and I believe that that was not her understanding either.

Given the “must” in clause 9 regarding psychiatric referral to a third tier panel—which, let us remind ourselves, is not in place in any of these jurisdictions from which figures are cited around potential deaths of people with anorexia—I feel there are significant safeguards. Furthermore, we have just agreed to amendment 399 tabled by the hon. Member for East Wiltshire, clarifying the “medical condition” piece, which provides a further safeguard.

I respect the need for us to consider these matters carefully, but I urge a degree of holistic thinking when we talk about individual clauses. Some of the statements being made—that there are no protections in place—just do not fly, to me, given the Bill as a whole.

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

Debate between Lewis Atkinson and Naz Shah

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Naz Shah]

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

Dr Price: There is a lot of research evidence around depression in people with palliative care needs and people nearing the end of life. We know that depression is common, and across a number of studies it is at around 20%—much more common than in the general population. We know that depression is strongly associated with a wish to hasten death, and that if depression is found and treated in that group of patients, there will be significant change in the wish to hasten death.

There are a number of associations other than depression with a wish to hasten death, and they include difficult symptom experience, poor functional status—needing a lot of help with things—and being socially isolated. Those are really key ones. They also include a sense of loss of dignity and feeling like a burden on others. These things can all come together to make life feel very unbearable. We know that there is also an overlap between a wish to hasten death, which is a response to suffering, and feeling that one is better off dead, ending one’s own life or harming oneself. I was involved in a study where we asked people both the wording of “a wish to hasten death” and the suicide question from the PHQ9, which is a depression screening tool. Those who had a wish to hasten death were 18 times more likely to also feel suicidal, according to the psychiatric definition, than people who did not have a wish to hasten death. There is a strong association.

[Lewis Atkinson]

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

“the more serious the decision, the greater the level of capacity”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]

and that it is used in tens, if not hundreds, of life and death cases in the NHS every week. The example he gave was someone refusing blood products that they would need to continue their life. In the light of that, I suppose I am a bit confused about your evidence saying that the MCA is not suitable for life or death decisions of this type. Do you think the MCA is not fit for purpose for those current life or death decisions that are being made, or is there something about the life or death decisions that would be made in an assisted dying context that makes that different?

Dr Price: The assumption that the Mental Capacity Act can translate neatly into this specific decision without a really clear sense of what that would look like in clinical practice is something that needs more careful thought.

I was involved in research in this area, and one of the things that I did was to scrutinise the concept of capacity as discussed in a number of forums—for example, the Commission on Assisted Dying, discussions in the House of Lords, and also interviews with doctors in England and Wales and in Oregon. There is a broad sense of what capacity is. For some, it is a very tight, cognitive definition that would mean that in practice, in assisted dying, most people would be found to be capacitous. Those who advocate a much broader sense of what capacity is—these can be contained within the framework of the Mental Capacity Act—would advocate a much broader sense of what that is, thinking about values and the person’s life experience and making more judgments, really, about that person’s life in a general sense.

What I do not think we have really pinned down is what concept of capacity is operating in the thoughts behind this Bill. Is it enough to say that we will essentially refer to the Mental Capacity Act, or do we need to be more specific about what is capacity for this decision? Is it sufficient to say, “We will refer out”, or do we need it on the face of the Bill so that anybody assessing capacity for this decision knows exactly what they should be doing and exactly how they should be having that conversation? Even though you may be operating within a legal framework, I think that the actual conversation —the actual content—will vary across practitioners. Is that good enough? Is that sufficient? Is that a good enough standard? When I do a capacity assessment, I have in mind that it may be appealed against—that is somebody’s right—and it should be available for scrutiny by a court. Essentially, that is the standard we are looking for, so it needs to be clear where the standard lies.

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[Lewis Atkinson]

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

Although it is not my area, I absolutely note the concerns and the discussion about respecting the democratic will of the Senedd in these matters. Would you suggest any potential avenues in the Bill to incorporate an element of positive affirmation by the Senedd, or its consent? What do you suggest we look at?

Professor Lewis: Formally, there is a need in any event for a legislative consent motion in relation to the specific bits I mentioned earlier, I have suggested one potential avenue, which is that the Senedd and Welsh Government take on responsibility for whether and when the Act commences in Wales. Another option might be to do a thorough “think once, think twice, think Wales” review to see to what extent other functions of the Secretary of State might be better exercised in Wales by the Welsh Ministers. That is a non-exhaustive list, but I hope it helps.

[Naz Shah]

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

Dr Price: The evidence that we have from research—this is in populations who would fulfil the criteria in terms of terminal illness—is that the prevalence of depression is around 20%. That is across a number of populations. It is associated with a wish to hasten death. Depression might impact upon that person’s decision making; I am not saying that it absolutely would, but it might. Also, treatment might change their view. We know that there is a strong association, for example, between pain and a wish to hasten death. Unresolved physical symptoms make people want to die, and when that pain is better, people no longer feel that way.

That is borne out in my clinical practice. We will get urgent referrals to see somebody who wants to die and who they are very concerned about. Then the pain is under control: we see them that day or the next day and they say, “Do you know what? The pain’s better. I don’t feel like that any more.” When we think about symptoms, we need to think carefully about what is treatable and what is remediable. That may be about psychiatric interventions, but it is often about a biological, psychological and social approach.

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

Debate between Lewis Atkinson and Naz Shah

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Lewis Atkinson]

I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.

[Naz Shah]

There is nothing in my amendment that suggests Professor Monckton-Smith is not capable in her expertise. I am asking for other expertise to be brought to the table. Yes, there is the argument that people can submit written evidence—but so could every witness we have heard from today, and that we will hear from tomorrow and the day after. If that is the yardstick, is this just a tokenistic exercise? I would argue that for women in particular, who are the victims of domestic abuse—

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

Debate between Lewis Atkinson and Naz Shah

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Naz Shah]

Q I am a former NHS commissioner, Sir Chris. In Bradford West, we have stark health inequalities. Dr Jamilla Hussain, as part of John Wright’s team, will be providing evidence this week. She has found huge mistrust among marginalised ethnic groups—even more so since covid. We know that covid brought to light the inequalities in healthcare access that already existed, especially for economically disadvantaged communities. What lessons do we need to learn from covid and its disproportionate impact on ethnic minority communities when it comes to this Bill in particular and its implementation?

Professor Whitty: That is an absolutely critical question, because it is very important that if the Bill is passed, all parts of society, of whatever ethnicity and of whatever background, have equal access to the Bill—or not, as Parliament determines. That will require adjustment in a variety of ways. Some can be done at a macro level—for example, making sure that everything is translated into the major languages spoken in the United Kingdom—but a lot of it will be to do with the individual interactions that doctors, nurses and other healthcare providers have with individual patients, which must take into account their own starting point, their own knowledge and, most importantly, their own beliefs.

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Sir Chris, you mentioned having time to ensure that people are appropriately trained, and the Bill includes provisions for the Secretary of State to make orders around required training. Could you say a little bit more about that? If Parliament decide to pass an Act of this nature, what training would be helpful and required—in particular around skills, and the assessment of capacity and coercion?

Professor Whitty: I will give my view, and it might be useful to get Duncan’s view on the nursing side, because nurses will often be heavily involved in these discussions.

I would divide the kind of training that is needed into two broad groups: training that is essentially normal medical practice but may need some variation, and things that are clearly specific to this Bill. Issues, for example, around mental capacity—as determined by the Mental Capacity Act 2005—are dealt with every day, in every hospital up and down the country; every doctor and nurse above a certain level of seniority should be able to do that normally. It may require some slight adjustment. There is an absolute expectation within the Act, for example, that the more serious the decision, the greater the level of capacity that someone needs to have. That is already built into the principles of the Act and the way that things are done. I would extend that to the management of end of life, which should be a normal part of medical and nursing practice—we will all die eventually, and that has always been part of medicine, and always should be. That training should be generic, but may need some adaption.

There will then be some specific things that will be necessary for people to understand the legislation, including, in some cases—if this Bill is passed—if they are to take part in the final part of prescribing drugs to patients. It is much more likely that a very large number of doctors and nurses may get involved in the very earliest stages, because someone may raise an issue with their GP, nurse or consultant, who will need to have the basic understanding for that. In my view, the more detailed later stages will require some specific training. I think there will be a gradation of doctors: those who are happy to have the general, initial conversation; those who are happy to have the structured conversation that follows; and a minority who will be happy to go on to take part in the final stages.

It is very important that the wishes of the patient are respected. That is the central point of this. We must start with what is good for someone in their last six months of life, and for their immediate family, but we must also make sure that the wishes of healthcare professionals around this area are absolutely protected, when it comes to conscience and to choice.

Duncan Burton: I am mindful that there are two groups of staff who would potentially be working in this service, if the Bill is passed, but also of the wider workforce. At 2 o’clock in the morning, when a patient wants to have a conversation with somebody about end of life, it is going to be a nurse with them, or a nurse in a care home, or a specialist nurse providing cancer care, so we have to think about the training and support that is required for them, be that around signposting or explaining where they can go to access more information. There is an important part about the entire wider workforce that we need to think about.

Clearly, for those people who are working in such a service, we need to think about the safeguarding elements, and how we make sure there is support through safeguarding training and confidentiality—particularly mindful that some patients may choose not to tell their families about this. We need to think about how we enable and support staff in managing those kinds of circumstances and navigating the legal requirements through the Bill. We need to think ahead about what we need to do in undergraduate training for doctors and nurses, and in the curriculum.

--- Later in debate ---

[Lewis Atkinson]

Q So you would be happy if there was an explicit prohibition on recommendation.

Dr Green: I am reluctant to make a statement on that in this forum. We will go away and discuss it, and come back to you.

[Naz Shah]

Q This question applies to both of you. On there being a first doctor and a second doctor, the first doctor is required to determine that the patient has a terminal illness, that they have capacity, and that they are not being coerced or pressured. Again, it is for the second doctor to make sure that the patient has a terminal illness, that they have capacity and, again, that they are not being coerced or pressured. I appreciate that Sir Chris Whitty talked about doctors, and you talked about everybody, being trained in capacity and coercion issues, but those doctors may never have met in the first instance the person who is seeking assisted dying.

The question that worries me is, to be able to fulfil all those actions in all cases, without fear of mis-determining, the two doctors would have to be specialists in all the relevant diseases. For example, if somebody has a brain tumour, lung cancer, or a different type of cancer, would the doctor have to be an expert in that to determine that the person is terminally ill?

From the GMC’s point of view, would we find ourselves in a situation where doctors are working outside their professional competencies and expertise? From the BMA’s point of view, how do we protect doctors from finding themselves having to diagnose life expectancy for a disease they are not a specialist in, or to determine capacity when they are not a specialist in that, or to determine a lack of coercion when they potentially do not know the patient and do not have experience of that? Finally, when the next step is taken and the court has to rely on the testimony of these doctors to protect the patient, can those testimonies safely be relied on by a court and by a judge, given all those concerns?

Mark Swindells: There are quite a few points there—let me work through them backwards. We have some existing guidance for doctors when they act as a witness—for example, in a court setting or a medical legal situation—that talks in general terms about the importance of being an appropriate witness. Inherent to that is some expertise and understanding of the topic they are assisting the court on. I suppose that those sorts of principles would be ones that, if the Bill is passed in this form—I say again, the GMC does not have a view on what the delivery mechanism or the Bill should look like—are applicable points from the guidance, which would read across.

You heard from the chief medical officer his caution with regards to going with a condition-based assessment for this sort of thing. We would not have a particular view on that, but there is one thing that I want to highlight. The Bill talks about specialism in the context and seeking advice from a psychiatrist. On the specialist register held by the GMC, there are five specialisms connected with psychiatry, so some clarity—whether the Bill is intended to cover any, or a particular one, of those—would be good.

I know that it is not restricted in the “independent doctor” and “coordinating doctor” roles in the Bill either, but we are aware that when doctors pursue a specialty, in the sense that they become accredited and go on to our specialist register, that does not fix in time their individual scope of practice or expertise. Many doctors will go into slightly different fields, or focus on one particular area, so one cannot necessarily rely on the specialist register as a current indication of a doctor’s area of competence in that way. On what the precise delivery mechanism is and the point you make about whether either of those two roles of doctor have seen the person, because we have not taken a view on what the law should be, we have not taken a firm view of any process or eligibility, but I note the point.

Dr Green: If I may, I will clarify my previous answer, having had a little more thought. I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process. My internal thoughts on whether it should be on the face of the Bill, contained in guidance or contained in good medical practice was the point that I was unsure about.

[Lewis Atkinson]

indicated assent.

Dr Green: With regard to the specific questions, no, I do not believe that a doctor has to be a specialist in the individual disease at stake to advise a patient about prognosis. I can only refer you back to what Dr Whitty said: that in the majority of cases, it is fairly clear—this applies to capacity, too—but in some cases, it is not so clear. What is important is that the doctor has the ability to seek further advice if they need it; it is not always required.