Hughes Report: First Anniversary

Daniel Francis Excerpts

Thursday 27th March 2025 Westminster Hall

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is a pleasure to serve under your chairship, Ms Furniss. I thank my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson) for securing this important debate.

I pay tribute to my constituents Paula and Gillian, who have experienced the impact of pelvic mesh. I raised Paula’s experience in a debate on 5 December, but not much has changed for her. She is still living with the devastation that pelvic mesh has caused to her life and wellbeing. As we have heard, Paula and Gillian are not alone in their experience. According to the Patient Safety Commissioner, the lower-end estimate suggests that 10,000 women have been harmed.

I pay tribute to all those who have campaigned for many years on the issue of sodium valproate. My good friend Teresa Pearce, the former MP for Erith and Thamesmead, worked very closely with many of the families over many years. She knows that the issue is close to my heart.

The Epilepsy Research Institute welcomed the Hughes report’s recognition of the vital role that research plays in understanding and mitigating the risks of anti-seizure medication. It continues to raise its key asks on how we can move forward with the report’s recommendations. The institute’s view is that Ministers need to provide a clear timeline for implementing the redress schemes and research funding that are recommended in the Hughes report. There is a need for dedicated, ringfenced funding for epilepsy research, particularly into the effects of anti-seizure medications taken during pregnancy.

My wife and daughter are both on sodium valproate. I know that sodium valproate did not affect my daughter, even though she has cerebral palsy from a brain injury at birth. However, I saw what happened to my wife: being taken off sodium valproate turned her life upside down. She went from being 12 years seizure-free to having to surrender her driving licence and not being able to work for some periods. I saw what it does to women in that situation, even though she had the correct advice. She eventually had to return to sodium valproate because of the number of seizures she was having and the impact it had on her life. I cannot imagine for a moment what the families present have gone through, but I know the impact that sodium valproate can have on women’s lives.

The Epilepsy Research Institute’s asks include:

“Ensuring that regulatory bodies act swiftly on safety concerns and that pregnant women with epilepsy have access to the best possible information and care. Working alongside experts and patient groups to ensure policies reflect the needs of those affected.”

I ask the Minister to address those recommendations.

We need to consider the people impacted by mesh and sodium valproate, as well as the wider impact. Sodium valproate continues to be prescribed, and we need a continuing review of how that affects women through their lives.

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

Daniel Francis Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Kim Leadbeater]

I repeat what I said earlier about what will happen to the patient if they choose to cancel: their care will continue. From a medical practitioner perspective, it is inconceivable that those patients would be abandoned, as the hon. Member for East Wiltshire is suggesting. That would not happen.

I understand that cancellation of the second declaration does not need to be included in clause 14(4) because of when in the process it would happen. The first declaration comes much earlier, so clauses 7 to 9 would be applicable; the second declaration comes further down the process, so does not need to be included. However, I am happy to look at that in further detail and come back to the hon. Member on that, if necessary.

Amendment 375 agreed to.

Amendment made: 376, in clause 14, page 10, line 12, after “doctor” insert “and the Commissioner”.—(Kim Leadbeater.)

This amendment requires a practitioner other than the coordinating doctor to notify the Commissioner (as well as the coordinating doctor) of a cancellation of a first or second declaration.

Clause 14, as amended, ordered to stand part of the Bill.

Clause 15

Signing by proxy

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I beg to move amendment 321, in clause 15, page 10, line 33, at end insert—

“(d) the reason why the person was unable to sign their name.”

[The Chair]

With this it will be convenient to discuss the following:

Amendment 431, in clause 15, page 11, line 1, leave out paragraphs (a) and (b) and insert

“the donee of Lasting Power of Attorney for Health and Welfare decisions, who has the ability to give or refuse consent to life-sustaining treatment, as registered with the Office of the Public Guardian.”

This amendment would restrict proxies to donees of Lasting Power of Attorney for Health and Welfare decisions, including to give or refuse consent to life-sustaining treatment.

Amendment 473, in clause 15, page 11, line 3, leave out from “person” to end of line and insert

“of a description specified in regulations made by the Secretary of State.”

This amendment provides that persons of a description specified in regulations (rather than persons “of good standing in the community”) may be proxies.

Amendment 253, in clause 15, page 11, line 3, at end insert—

“(6) For the purposes of this section “declaration” includes the cancellation of a declaration.”

This would allow a cancellation of the first or second declaration to be signed by a proxy.

Clause stand part.

[Daniel Francis]

It is a pleasure to serve under your chairship, Ms McVey. Amendment 321 will mean that the proxy’s declaration must also include the reason why the person was unable to sign their name. That would add a vital safeguard for the person and for the proxy.

In this Committee, we have consistently discussed the need to safeguard vulnerable people from being coerced into choosing assisted dying; for those who need a proxy, the risk of coercion might be higher. As the Bill currently stands, the person needs to tell only their proxy the reason why they are needed. I would like to make it clear why the amendment is important. The Bill does not currently specify that the patient’s declaration of the reason for needing a proxy has to be heard by anyone other than the proxy themselves.

I am conscious that, since my amendment was tabled, my hon. Friend the Member for Spen Valley has also tabled amendments about the relationship and who the proxy could be, but I do not believe that amendment 321 would be a burden or cause any unnecessary complication. As the Bill currently stands, when a proxy signs the declaration they already have to include their full name and address, the capacity in which they qualify, and a statement that they have signed in the capacity of a proxy.

As we have said before, it is vital to safeguard vulnerable people at every stage of the process; adding the reason why the proxy was required allows other people during the process, including if there were allegations later, to understand why that was required. If the first declaration is signed by a proxy, then the co-ordinating doctor—the independent doctor—would be able to examine that reason, so including the reason for someone being unable to sign their own declaration would improve transparency around the process. I hope that hon. Members will agree that we need to be able to monitor how those requests are made and the reasons that people are giving.

In written evidence, several experts raised the importance of collecting good data to ensure that the assisted dying process is properly monitored, and amendment 321 would assist that; I believe that it would protect both vulnerable patients and proxies. I absolutely appreciate and understand that people may have a very good reason for requiring a proxy—if they are very ill during the process, for example. The amendment would simply mean that, if there were to be concerns or allegations at a later stage, the reason why the proxy was required would be written down.

[Kim Leadbeater]

My hon. Friend is making a really sensible point and a fair argument, and I am very happy to support the amendment.

[Daniel Francis]

I welcome my hon. Friend’s acceptance of the amendment, and I think she sees the point behind it. It was meant not to be awkward—I do not think I have been at all awkward during this process—but simply to state that, if there were concerns later, the reason why the proxy was required should be there in a transparent way. I commend amendment 321 to the Committee.

[Danny Kruger]

I am grateful to the hon. Gentleman and I very much support his amendment; it is good to hear that the Bill’s promoter, the hon. Member for Spen Valley, will as well. The hon. Member for Bexleyheath and Crayford has made his points very powerfully, and it is good that we are in agreement.

I also support amendment 431, tabled by the hon. Member for York Central, which would restrict proxies to donees of lasting power of attorney. The point is that somebody who has been through the process of taking on power of attorney has been properly vetted and approved; they are required to demonstrate their fitness for the role and undertake a meaningful duty of care to the person for whom they are a proxy. That strikes me as an appropriate suggestion from the hon. Lady.

Amendment 411, tabled by the hon. Member for Broxtowe, suggests that the phrase

“a person who is of good standing in the community”

should be deleted. I think she is absolutely right to suggest that. I made the point on Second Reading that—

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

Daniel Francis Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Danny Kruger]

I was not suggesting that pentobarbital has a paralytic effect. Often in assisted dying, a paralytic is administered first as part of the cocktail of drugs. Subsequently, we discover that while the patient may have appeared entirely calm, sleeping peacefully, significant trauma may have been occurring beneath the surface.

I defer to the hon. Member’s knowledge, but my understanding from the scientific evidence I have read, and that medics have given to me, is that the extent to which people executed by lethal injection, by pentobarbital, have their lungs fill with fluid is peculiar—it is remarkable. They effectively drown beneath their peaceful exterior.

I intend to press amendment 464 to a vote, and I intend to support other amendments in this group. Although I support the aspiration of amendment 532 to make provision for what to do in the event of a procedure’s failure, I think it gives too much leeway to the Secretary of State, so I will oppose that amendment. I think the amendments that the hon. Member for York Central and I have tabled are preferable.

To make the obvious case for those amendments, and as I said in a previous debate, there are three choices in the event of failure. The first is to ignore the plain signs of distress, of things going wrong and of the patient suffering, which is clearly a failure of the doctor’s duty of care. The second is to expedite the death, which we have decided would be illegal under the Bill. Therefore, the only option is to revive the patient and escalate treatment, rather than actively or passively facilitate their death.

I hope Members will agree that, on the rare occasions when assisted suicide goes wrong, it is right that the patient is immediately revived and taken to hospital, or for the doctor to take whatever action is necessary. I am interested to understand why those amendments should not be supported.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is a pleasure to serve under your chairship, Sir Roger. I will speak to amendments 429 and 430 in my name. During oral evidence, we discussed the issues in subsections (9) and (10) of clause 18 and whether there is a contradiction. Subsection (9) states that the co-ordinating doctor

“must remain with the person”

and subsection (10) says:

“For the purposes of subsection (9), the coordinating doctor need not be in the same room as the person”.

We also discussed how that works in other jurisdictions. My amendment 429 would deal with that conflict. If the Bill were to become law, that conflict could be queried.

We also need to consider the possibility of complications. Clearly, if there are complications and the doctor is not in the same room, they would not necessarily be aware of those complications. I accept that, in some normal circumstances, doctors and medical professionals are not present in the room at the time of death; at other times, they are present. The amendment would mean that if something were to go wrong and someone was having a painful reaction to the drugs, the doctor would be there to see and help.

I do not understand what the Bill means when it says the doctor does not have to be in the same room. How far away would the doctor have to be? One subsection says the doctor has to remain with the person, and the following subsection says they do not have to be in the same room. If the Bill were to pass, we would be asking doctors to do something that is unprecedented. If the person were to suffer complications such as seizures or vomiting, or if they were exhibiting signs of distress, it appears that the doctor should be present. Members may think this could encroach on a patient’s privacy, but I think there is a discrepancy between the two subsections.

On amendment 430, I am conscious that my hon. Friend the Member for Ipswich has tabled a similar amendment. The intention of my amendment is to ensure there are regulations in responding to any unexpected complications that arise in relation to the administration of the approved substance, including when the procedure fails. I am conscious that if a doctor intervenes, they could end up in breach of the Suicide Act 1961. I therefore left the wording in that vein, as I understand that we will receive more information in due course.

Again, we received oral evidence from a number of people that what a doctor is meant to do in the event of unexpected complications is a matter of concern from both a legal and a medical perspective. We know from the evidence received from other jurisdictions that—I accept in a small minority of cases—there can be complications or the death can take much longer than expected. We also received evidence that, on rare occasions, death can take days.

Amendment 430 would show we have thought about those circumstances and provided for them by giving doctors a code of practice to refer to, rather than being left in the dark if a difficult situation arises at the time of death. We must not find ourselves in a circumstance in which doctors and patients are unprepared. It is important for us to think through, provide for and safeguard against all possible scenarios, however rare they might be. Of course, we would not want them to happen, but in some circumstances they might, and we would not want there to be a legal hole. Accepting the amendment would mean the Secretary of State has the opportunity to provide a code of practice for such circumstances. I hope hon. Members will be able to support the amendments in my name.

[Sarah Olney (Richmond Park) (LD)]

It is a pleasure to serve under your chairmanship, Sir Roger. I support amendment 429, tabled by the hon. Member for Bexleyheath and Crayford.

I do not understand how subsection (9) can require the doctor to remain with the person until they have self-administered and died, or until they have decided not to self-administer, while subsection (10) states that the doctor need not be in the same room. The Bill becomes even less coherent when we consider subsection (11), which requires the doctor to remove the substance immediately if the person decides not to self-administer—how can the doctor do so if they are not in the same room? Amendment 429 would make the scheme more coherent and I support it for that reason.

I accept that there are downsides to having the doctor present, especially before the administration, as people have a normal desire for privacy, but that needs to be balanced against the risk of someone else taking the substance or something going wrong in the process of self-administration. In Australia, there is no requirement for the doctor to be present, which has led to some cases of abuse. I understand why the Bill’s promoter has chosen not to go down the Australian route, but the position arrived at in subsection (10) lacks coherence and is unclear.

What does it mean to remain with the person without being in the same room? Does it mean being in the corridor just outside the room, but with the door open? What if it is closed? What if, as a result of the door being closed, the doctor is no longer within earshot? I am not the only one who is confused, as so are the doctors who will have to apply the legislation. For example, Dr Janet Menage, a retired GP, told us in written evidence—TIAB 182—that the provisions

“are mutually exclusive: doctor ‘must remain with the patient’ but ‘not in the same room’…This makes no sense. In any case, if the attending doctor is not in the same room there could potentially be an intervention by another person to the patient’s detriment. Or the patient may wish to cancel the suicide at the last moment and be unsupported in voicing that decision.”

With or without subsection (10), I would like to know whether the Minister has made an assessment of the workforce impact of such a requirement for the doctor to be present. As Dr Rebecca Jones told us:

“As the death may take many hours, I’m uncertain of the practicalities of this”.

--- Later in debate ---

[Dr Opher]

I will make a little progress and will then take my hon. Friend’s intervention.

On amendment 436, all medical practitioners are required under their code of practice to record any event they come across. I feel there should be better data and I agree with the hon. Member for East Wiltshire that we need to collect data. We are actually very good at doing that in the NHS. Under clauses 21 and 22 there are provisions for the Secretary of State to collect data on complications. I am therefore not sure that particular amendment tabled by my hon. Friend the Member for York Central is necessary. I think I have covered amendment 464, from the hon. Member for East Wiltshire.

On amendment 429, about the doctor being in the same room, I totally understand the anxieties presented by my hon. Friend the Member for Bexleyheath and Crayford, but I feel that whether the doctor is there should be the choice of the family and the patient. There may be some confusion about this, but to me, what the Bill implies—I am interested to hear the Government’s opinion—is that the doctor should deliver the medicine to the patient, check that the patient is willing to take the medicine as per amendment 462 from the hon. Member for East Wiltshire, give the medicine to the patient, and then ask the family whether they want them to be there or in the next room. They need to be available, but do they need to be in the same room? I think that should be the choice of the family.

[Daniel Francis]

I hear what my hon. Friend says, but the wording of clause 18(9) and (10) is ambiguous. Subsection (9) says that the co-ordinating doctor must remain with the person until “the person has died”, but subsection (10) says that the doctor

“need not be in the same room”.

I do not want to get into measuring metres, but where exactly is that place? Is it in the same room or is it in the same building? If it is in the same building, you cannot possibly be with the person until they die. Does my hon. Friend have comments on that?

[Dr Opher]

I am interested to hear what the Government say about the wording around that amendment and whether it is safe. I would defer to the Minister on that.

Amendment 430 from my hon. Friend the Member for Bexleyheath and Crayford, about a code of practice that must address complications and failures, is quite a strong amendment and I am willing to support it. If as doctors we have a code of practice about how we handle this type of thing, the amendment would potentially help, and perhaps answer some of the questions from my hon. Friend the Member for Banbury.

I do not believe that amendment 255 from my hon. Friend the Member for Filton and Bradley Stoke is necessary. I believe it should be dealt with under clause 21.

I believe that the very well put amendments 532 and 533 from my hon. Friend the Member for Ipswich could be covered by amendment 430.

Rare Cancers Bill

Daniel Francis Excerpts

2nd reading
Friday 14th March 2025 Commons Chamber

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I pay tribute to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing the Bill and for his work in bringing about this necessary debate on rare cancers. I also pay tribute to all Members who have spoken today, but particularly to my hon. Friend the Member for Calder Valley (Josh Fenton-Glynn) for his heartbreaking tribute to his brother.

Like too many across this House and throughout the United Kingdom, I have been on the receiving end of the devastating news that a loved one has been diagnosed with cancer, but when that cancer is defined as rare, it is infinitely more terrifying, when confronted with the reality that there is a lack of funding and research dedicated to those cancers. I therefore welcome the three steps in the Bill to encourage further research into rare cancers. I welcome the fact that it will place a duty on the Secretary of State for Health and Social Care to facilitate or otherwise promote research into rare cancers. The Bill will ensure that appropriate arrangements are in place for patients to be easily contacted about research opportunities and clinical trials, and will also ensure that there is adequate oversight of research delivery for rare cancers.

I also pay tribute to my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for her dedication in bringing glioblastoma and other types of brain cancer to the forefront of the political debate. I would like to mention the all-party parliamentary group on brain tumours and its work to raise awareness of the issues facing the brain tumour community. I have seen at first hand how devastating glioblastoma can be: my dear friends and constituents, Ann and Richard Lucas, lost their son Fionn in 2022. Fionn was diagnosed with glioblastoma aged 58 in June 2022, and his cancer left him with a very short time to live—he died two months later. The Lucas family has supported the work of the Brain Tumour Charity to help find new treatments, offer the highest level of support and drive urgent change, given the charity’s aims of saving and improving lives and carrying out research into brain tumours globally.

Glioblastomas are fast-growing brain tumours. They are the most common type of cancerous malignant brain tumour in adults, yet as has been said, there is still a lack of funding. Of the 54% of research that is specifically about rare cancers, only 16% is focused on brain and nervous system cancers. I therefore welcome this Bill, thank my hon. Friends the Members for Edinburgh South West and for Mitcham and Morden, and place on record my support for the aims of the Bill—to support research, and to support those impacted by rare cancers.

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

Daniel Francis Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

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

It is a pleasure to serve under your chairship, Mr Dowd.

I rise to speak in support of amendment 185, in the name of the hon. Member for Spen Valley, the Bill’s promoter, regarding training requirements that need to be made by regulation. It would place a duty on the Secretary of State to make regulations about training qualifications and experience required in order to act as a co-ordinating doctor. Similarly, amendment 186 says that the regulations should specifically include training relating to the assessment of capacity and assessing whether a person is being coerced or pressured by any other person. Proposed new subsection (3C), introduced by amendment 186, would make provision that

“the required training, qualifications or experience is to be determined by a person specified in the regulations.”

In making those regulations, reflection of expertise is vital. We heard from many experts who gave us evidence about the importance of training, development and mentorship, which we would expect to see covered in the regulations. Placing those requirements in regulations would mean that they could be developed through consultation with experts and stakeholders, after gaining a wide range of feedback. It would also future-proof the requirement of any training to be developed and strengthened through future experience.

As part of the safeguards in the Bill, the key principles around assessing capacity and potential coercion are really important. I am therefore minded to press the hon. Member for Spen Valley also to support amendment 20, in the name of my hon. Friend the Member for Lowestoft (Jess Asato), which states:

“Regulations under subsection (3)(a) must specify that training in respect of domestic abuse, including coercive control and financial abuse is mandatory.”

That would provide further clarity, and would further strengthen training on assessing coercion in all senses of the word as part of the safeguards, which many Members, even in the earlier debates, have said that it is so important that they see. I agree, and I hope that the promoter of the Bill will support amendment 20.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I rise to speak to the amendments in my name—namely, new clause 12 and amendments 336, 337 and 335. Yesterday, we spoke about the evidence we received from the British Medical Association. I accept that there is some crossover between my amendments and the amendments of the Bill’s promoter, my hon. Friend the Member for Spen Valley, on training.

The British Medical Association stated, with regard to my amendments:

“We strongly urge MPs to support these amendments which would define the ‘training’ explicitly in the Bill as specialised training to provide assisted dying, undertaken by those who opt in…We have been vocal that the Bill should be based on an opt-in model…during the Committee’s oral evidence sessions. Reinforcing this, we believe NC12 and Amendments 335-337 would make two important aspects of this provision in the Bill clearer:

1. That providing assisted dying is not, and would not in the future, be expected of all doctors—the Bill’s current all-encompassing reference simply to ‘training’ does not preclude this training being prescribed as standard general medical training via the regulations, in which case it would apply to all doctors and make the opt-in redundant. Specifying that it is ‘specialised’ training on the face of the Bill, and making clear that there is no obligation on doctors to undergo the training, would safeguard the opt-in model in the Bill’s first principles.

2. That only those who undergo specialised, tailored training on assisted dying could provide the service – during the oral evidence sessions, there has been much discussion about the importance of specialised training for those who opt in to carry out the service. Specialised training for those providing the service is essential for doctors and provides additional protection and safeguards for patients—it should be explicitly referenced in the Bill.”

We heard in our oral evidence sessions from others, including Dr Ahmedzai, on the need for training. He said:

“I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 69, Q82.]

I now turn to two amendments in my name: amendment 340 and amendment (a) to amendment 186. Both amendments relate to training for those with learning disabilities and autism. We had a similar discussion on a previous clause, and I know that further amendments are likely to be tabled on the matter, but as I said yesterday, they are not currently on the amendment paper.

I heard and welcome what my hon. Friend the Member for Luton South and South Bedfordshire has said about amendment 20. Putting that training in the Bill is hugely important, and I believe the same is true in relation to training for those with learning disabilities and autism, as set out in to amendments 340 and amendment (a) to amendment 186, particularly given my concerns and those of others about whether we end up with clause 3 relating to the Mental Capacity Act 2005.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I thank my hon. Friend for his amendments, and I agree with their principle. My concern is that, again, people with mental disorders are left out. Does he agree that, if there were a way to amend the Bill later so that they could be incorporated in these proposals, that would be a positive step forward?

[Daniel Francis]

I would welcome that as a positive step forward—I think there is probably still some work to do in that regard. My hon. Friend and I will have conversations on the wording of that future amendment, but at the moment we are discussing the amendments that stand before us. Any future amendments that may be tabled are not for us currently to consider.

[Dr Tidball]

As my hon. Friend knows, I have a great deal of respect for him, so I gently say that if he brings forward similar amendments later in the Bill, I would be delighted to talk to him and I ask him to include mental disorders.

[Daniel Francis]

I hear that, and I think my hon. Friend and I are on the same page on many of these matters. I think there were some drafting issues when I discussed amendments with Mencap at an earlier stage.

I commend to the Committee the six amendments in my name in this group: new clause 12 and amendments 336, 337, 335, 340 and amendment (a) to amendment 186.

[Danny Kruger (East Wiltshire) (Con)]

I want to quickly indicate my support for the amendments tabled by the hon. Member for Bexleyheath and Crayford, amendment 290 in the name of the hon. Member for York Central and amendment 20 in the name of the hon. Member for Lowestoft about specific training on domestic abuse and coercive control.

I will now speak to my own amendments, which would require there to be a preliminary discussion before the signing of the first form. At the moment, the Bill allows someone to make the first declaration and state, “I wish to be provided with assistance to end my own life”, without any preparatory discussion about what that entails. It is significant that we heard evidence from Professor House—a professor of old-age psychiatry—that the preferences of the person doing the assessment can bias the capacity assessment. As he explains, we are much more likely to declare that somebody has capacity when they say they want to have the treatment we are offering them, but can we really be sure that the request is freely made and reflects the patient’s wishes?

The fact is, we still do not know from the framework of the Bill how the process would be implemented, but the assessor is likely to be one of a small number of doctors who are willing to do this work on the NHS or somebody who is working for a private provider. Research suggests that the assessing physician’s own personal values and opinions may bias their judgment of a person’s mental capacity. Effectively, research says that the doctor will say that a person has capacity for treatment when he or she wants them to have it or believes that they should. That is significant.

We see from other jurisdictions that the assessment process can quickly become a tick-box exercise in which proper consideration is not given to what might be going on behind the declared wish. In Oregon in 2023, only three people were referred for a psychiatric evaluation by the assessing doctor—down from 33% of people in the early years. It is clear that evaluators have become less cautious when they come to sign the initial paperwork. In California, less than 1% of patients requesting an assisted death are referred for a mental health assessment. These are significant warning signs for us.

I am aware that the hon. Member for Spen Valley has tabled a helpful amendment—amendment 419—to clause 6, which is the clause dealing with the requirement for proof of identity. As I said yesterday, this retrofits a requirement for a preliminary discussion before the process can proceed. It is good that the hon. Member recognises the point that a proper preliminary assessment must be done before the declaration is signed, but I simply do not understand why that should be in clause 6; surely it should be in one single, consistent place, here in clause 5, relating to when the co-ordinating doctor first meets the patient to witness their form. I hope we might recognise that if the principle is being conceded by the amendment tabled by the hon. Member for Spen Valley, we should put that change into its rightful place.

It is worth nothing that at the moment someone could get a proxy to sign for them. The proxy does not need to know the patient or be known to them; they just need to be a person of good standing in the community. They need to undertake no training at all. We have been talking during in this debate about the importance of training, but the proxy who signs on the patient’s behalf does not need to have any training to inform the judgment that they are

“satisfied that the person understands the nature and effect of the making of the declaration”.

Frankly, a stranger to the person, who is not a medic, can sign that declaration on their behalf. At the moment, they can do so without a preliminary discussion taking place. It is only after making that crucial declaratory statement that the co-ordinating doctor discusses the person’s diagnosis. I welcome the tabling of amendment 419, but I think it is in the wrong place. If we do not ensure that that preliminary discussion takes place when we are debating this group of amendments, it might be too late if amendment 419 does not pass, or if it is unsatisfactory, as I think it is.

There is another related problem. Amendment 419 would allow the co-ordinating doctor to confirm that a preliminary discussion has taken place. That means that the discussion could have taken place before the first declaration—in a sense, that is welcome, because that discussion should be taking place—but it does not have to take place with the co-ordinating doctor. The co-ordinating doctor, who is taking responsibility for the whole process of the assisted death for this patient, is not required to have this preliminary discussion themselves. They are not required to go through the very important process of properly discussing the assisted death and informing the patient of what it entails and what the other options are.

My amendment 359 would enhance the significance of the preliminary discussion. It would mean that the doctor who witnesses the declaration—who co-ordinates the process of the assisted death—has had the fullest possible discussion with the patient, and that they genuinely take responsibility for guaranteeing that the patient is fully informed and aware of all of their options. I urge the Committee to support these amendments as well.

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

Daniel Francis Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Danny Kruger]

I understand, but it would be interesting to know whether the Government have produced a delegated powers memorandum, and when it will be published.

I have four quick points to make about my concerns about the amendments and new clause 8. First, new clause 8 provides that when making the SIs, the Secretary of State must consult the Equality and Human Rights Commission. That is a very positive step, but the other provisions on who should be consulted are, on closer inspection, illusory. The Secretary of State must consult those with expertise on capacity and coercion—that is all great—unless he or she considers that

“it would not be appropriate”.

What the new clause gives with one hand, it takes with the other. It would be good to identify in the Bill who the groups are that the Secretary of State must consult for each power.

Secondly, the vast majority of the SIs made under the Bill, as amended by the amendments, are to be made by the negative procedure. The last time that an SI subject to the negative procedure was annulled by the House of Commons was 1979. The procedure gives only the outward appearance of involving Parliament again. The SIs take effect when signed by the Minister, subject only to a motion of either House to annul them. However, by strong convention the Lords will do no such thing, and the convention in the Commons is that the Government will make time to debate such a motion only if it is put forward by the Opposition Front Bench, and it is at the Government’s discretion.

This being a matter of conscience, it is unlikely that any Opposition Front Bench would be in a position to table such a motion, and no one else has any standing. In practice, that means that there will be no opportunity for parliamentary scrutiny on, which lethal substances may be approved, for example, or on what events should be notified to the chief medical officer. These are not mere details.

Thirdly, on some of the matters addressed in the amendments it is doubtful whether the use of delegated powers is even appropriate, because even if there is a debate and a vote in Parliament, debate on an SI is limited to 90 minutes only and an SI is not amendable. In fact, the House of Lords Delegated Powers and Regulatory Reform Committee considered it improper that the Assisted Dying Bill introduced by Baroness Meacher gave the power to the Secretary of State to decide which substances should be allowed to cause death, because it was an inappropriate question for an SI.

Finally, and perhaps most substantially, clause 32 will establish a vast Henry VIII power. It allows Ministers even to amend primary legislation, and those changes would be subject to a simple yes or no vote in the Commons, without the possibility of amendment. It has been suggested in the Hansard Society podcast with the drafter of the Bill that the power is there because provision on the NHS could be made only if section 1 of the National Health Service Act were modified, removing the duty of the Secretary of State to improve the “physical and mental health” of the public. I look forward to seeing whether the amendments that have been promised include that. However, they will not necessarily amend the National Health Service Act, because that could be done under the statutory instruments created in these amendments.

If such a foundational piece of legislation as the National Health Service Act needs to be modified to allow this law to pass, surely it would be better to do it on the face of the Bill. I want to know why a Henry VIII power is needed. I hope that the Government might bring forward the relevant amendments to the Bill so that a Henry VIII power is not needed. I see that the hon. Member for Spen Valley is nodding, which is encouraging.

I stress that the Committee must bear it in mind that this power would exist on the statute book forever, unless the statute is repealed, so any Government could use this power. The last time that a Parliament found its voice to reject an SI by the negative procedure was back in the 1970s. When we come to a decision on amendment 233 and new clause 8, I will seek to make further amendments.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is a pleasure to serve under your chairship, Mrs Harris. It would be remiss of me not to comment briefly on new clause 8, given that throughout this process I have consistently raised issues around evidence given by the Equality and Human Rights Commission, and given that new clause 8 states that before making a recommendation the Secretary of State must consult the commission.

I remind hon. Members that the commission has told us that it strongly recommends that

“at the earliest opportunity, Parliament is provided with further information and assurance about the bill’s compatibility with equality and human rights.”

It went on to say that its concerns were that the Bill

“may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability.”

It has also stated:

“A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity…It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005.”

I welcome new clause 8, which is in the name of my hon. Friend the Member for Spen Valley, as it would ensure that the Equality and Human Rights Commission is consulted. We await its comments, which hopefully we will have before Report, on whether the concerns that it raised, both in writing before Second Reading and in their oral evidence, have been allayed. However, I welcome this initial commitment, and we will see where that brings us on Report.

--- Later in debate ---

[Naz Shah]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

[Daniel Francis]

I beg to move amendment 347, in clause 7, page 4, line 4, leave out from “to” to the second “the” in line 5 and insert—

“ensure that steps have been taken to confirm that”.

This amendment would remove the emphasis on the role of the coordinating doctor in making these assessments.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 294, in clause 7, page 4, line 5, after “doctor” insert—

“based on provided evidence that”.

This amendment would require that the doctor bases their assessment on provided evidence.

Amendment 14, in clause 7, page 4, line 15, at end insert—

“(2A) The coordinating doctor must take the report required under subsection (2B) into account in making an assessment under paragraph (2)(b), (f) and (g).

(2B) One or more qualified persons must have conducted a separate interview with the person and made a report to the coordinating doctor on the matters specified in subsection (2C).

(2C) The matters that must be covered in the report required under subsection (2B) are—

(a) any evidence of duress or coercion affecting the person’s decision to end their life,

(b) any difficulties of communication with the person interviewed and an explanation of how those difficulties were overcome, and

(c) the capacity of the person interviewed to understand the information given to them under paragraph (9)(2), (b), (c) and (d).

(2D) A person shall be taken to be qualified to conduct an interview under subsection (2B) if that person—

(a) is a registered medical practitioner who—

(i) is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council, or

(ii) has such training, qualifications and experience as the Secretary of State may by regulations specify,

(b) has not provided treatment or care for the person being assessed in relation to that person’s terminal illness,

(c) is not a relative of the person being assessed,

(d) is not a partner or colleague in the same practice or clinical team as the coordinating doctor,

(e) did not witness the first declaration made by the person being assessed, and

(f) does not know or believe that they—

(i) are a beneficiary under a will of the person, or

(ii) may otherwise benefit financially or in any other material way from the death of the person.

(2E) Before making regulations under subsection (2D)(a), the Secretary of State must consult such persons as they consider appropriate.

(2F) Regulations under subsection (2D)(a) are subject to the negative procedure.”

This amendment, and its consequential and linked amendments (15, 16, 17, 18 and 19), would provide for an independent assessment, via an interview conducted by a specialist, of a person’s capacity to make the decision to end their own life, their clear, settled and informed wish to do so, and that they have made the first declaration voluntarily and without coercion.

Amendment 15, in clause 8, page 4, line 38, at end insert—

“(2A) The independent doctor must take the report required under subsection 7(2B) into account in making an assessment under subsections (2)(b)(d) and (e).”

This amendment is linked to Amendment 14 and requires the independent doctor to take into account an assessment that would be required under that amendment.

Amendment 16, in clause 8, page 5, line 16, at end insert—

“or conducted the interview under subsection (7) (2B)”.

This amendment is linked to Amendment 14 and ensures that the independent doctor cannot be the same person who undertakes the assessment that would be required under that amendment.

Amendment 284, in clause 9, page 6, line 27, leave out from beginning to “refer” in line 28 and insert “must”.

This amendment would require a referral for the purposes of assessing capacity for both assessments.

Amendment 17, in clause 9, page 6, line 27, leave out paragraph (b).

This amendment is consequential on Amendment 14.

Amendment 6, in clause 9, page 6, line 27, leave out “may” and insert “must”.

This amendment would require the assessing doctor to refer the person being assessed for a mental capacity assessment if the assessing doctor had doubt as to the person's capacity.

Amendment 280, in clause 9, page 6, line 27, after “assessed” insert—

“or,

(ii) the person has a mental health condition;”.

Amendment 370, in clause 9, page 6, line 29, leave out

“registered in the specialism of psychiatry”

and insert—

“a practising psychiatrist registered in one of the psychiatry specialisms”.

This is a drafting change.

Amendment 18, in clause 9, page 6, line 32, leave out “or (b)”.

This amendment is consequential on Amendment 14.

Amendment 19, in clause 9, page 6, line 34, leave out “or (b)”.

This amendment is consequential on Amendment 14.

[Daniel Francis]

I will not press amendment 347 to a vote, but I will speak to it, and to this group of amendments.

First, I shall turn to amendments 14 to 19, tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), which would require a co-ordinating doctor to refer the patient to an independent psychiatrist, or someone else qualified, as decided by the Secretary of State. That practitioner would then produce a report that the co-ordinating doctor must take into account when assessing whether the person has capacity, has a clear, settled and informed wish to end their life, and has not been coerced or pressured.

These amendments would replicate the existing practice of assessment for living organ donors. If we use a psychiatrist’s assessment for those who are donating an organ—a serious decision—how much more serious is this decision to end one’s life, and how much more necessary is the psychiatric assessment? It feels illogical to offer psychiatric assessments to patients who may donate organs, but not to those who may end their life. The wording of these amendments mirrors the regulations that have been applied through the Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006.

For organ donation, there is a separate body—the Human Tissue Authority—which oversees the network of assessors. These amendments do not suggest a separate body for assessors in the context of assisted dying, instead suggesting that the assessor should be a registered psychiatrist or someone qualified, as decided by the Secretary of State. This ensures control over who can be an assessor while also being flexible.

My hon. Friend the Member for Spen Valley, the Bill’s promoter, said in oral evidence that she had looked at the model of assessment for capacity and coercion that is used for living organ donation, so I will be interested, when we get to that point of the debate, to know why the Bill does not model its assessments on those that are already done for organ donation.

These amendments would strengthen the Bill by ensuring that patients are properly assessed as having capacity to make such a huge decision and would help to spot coercion. As it stands, the Bill has no mention of the doctors giving assessments having psychiatric specialisms. These amendments would ensure that a specialist meets the patient, which is vital. We have heard already how difficult it can be to spot coercion, especially repeat coercion.

[Sean Woodcock (Banbury) (Lab)]

Given that this is a significantly more serious decision than organ donation, these amendments would seem a very appropriate change to consider.

[Daniel Francis]

I agree. An assessment by a specialist would protect patients and give another opportunity to spot coercion—something that we all want to safeguard against.

I welcome the acceptance of amendment 20, tabled by my hon. Friend the Member for Lowestoft (Jess Asato), ensuring that doctors will be better trained to spot these issues, but that is only the start. We need the same in-depth assessment that living organ donors would get. Patients must fully understand the decision they are taking, and doctors must be convinced that they are capable of making it.

For organ donation, the NHS recommends that potential donors meet a mental health professional at an early stage, particularly in cases where people have a history of mental illness. As we have already noted, those diagnosed with terminal illnesses are likely to also have mental health issues. Dr Sarah Cox, in her oral evidence, cited a study by Professor Louis Appleby, the Government’s suicide prevention adviser. Dr Cox said:

“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]

[Sojan Joseph]

We have discussed this issue many times. Within the Bill there is a provision for clinicians to refer to a psychiatrist if in any doubt. Does the hon. Member think that having that conversation at an earlier stage would be beneficial, rather than at a later stage?

[Daniel Francis]

I agree with my hon. Friend about the number of amendments in this vein, but clearly the amendments suggested by my hon. Friend the Member for Hackney South and Shoreditch bring us into line with existing regulations. In her evidence, Dr Cox said:

“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]

It is likely, therefore, that those diagnosed with a terminal illness will experience mental distress that could affect their capacity to make a decision about an assisted death. In her written evidence, Dr Virginia Goncalves, a retired clinical psychiatrist with over 30 years of experience in the NHS, writes:

“In my consultant psychiatrist role, I have encountered many desperate and suicidal patients wanting to end their lives after struggling with longstanding mental distress, who could have easily sought the option of assisted suicide if it had been available to them! But however depressed and hopeless they felt, with a compassionate and hope filled approach from their care givers and the correct medical and psychological treatment, the vast majority recovered enough to be able to have a ‘life worth living’. In so many cases, these patients have thanked me later for not giving up on them! Not once have I heard anyone say ‘you should have let me die when I wanted to do it’.”

A meeting with a psychiatrist or other psychological specialist will protect people who may otherwise not have chosen assisted dying. I emphasise again that we already ensure that patients who will donate an organ have this assessment, so why not those seeking an assisted death? We must protect vulnerable terminally ill people from being coerced into assisted death, and psychiatrists and other specialists are best placed to spot that. That is why the assessment is included for living organ donation.

[Naz Shah]

Does my hon. Friend agree that this is a safeguard that would actually strengthen this Bill, especially given the conversations we have had around repeated coercion?

[Daniel Francis]

Absolutely. This amendment, of course, is widely supported by Committee members for that very reason. As I was saying, we already use that assessment for organ donation, and Members supporting this amendment believe that should be the case for those that are seeking an assisted death.

I now move on to amendment 284, in the name of my hon. Friend the Member for York Central. This amendment would change clause 9(3). Currently, that subsection lays out, and I will quote the language of the Bill, that the assessing doctor,

“(b) may, if they have doubt as to the capacity of the person being assessed, refer the person for assessment by a registered medical practitioner who is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council or who otherwise holds qualifications in or has experience of the assessment of capability;”

This amendment would change the word “may” to “must”. In other words, the assessing doctor would have a duty to refer the person being assessed to a consultant psychiatrist if they had any doubt about that person’s capacity. I argue that this is a change that we both should make, and can easily make. If a doctor has doubts about the capacity of an applicant, it is good practice for them to refer that person to a doctor or a specialist in that field.

[Dr Opher]

Could I ask which amendment the hon. Member is talking about? Is it 284 or 6? Amendment 284 says that psychiatric assessment is mandatory in all cases, whereas amendment 6 says it is mandatory if capacity is in doubt. I just wondered which one he was talking about, because I support one and I do not support the other.

[The Chair]

Dr Opher, maybe you want to catch up on the papers and then intervene when you have a question to ask.

[Daniel Francis]

As my hon. Friend will know, my name is down as a supporter of amendment 6. I will get to that in due course. At the moment, I am speaking to amendment 284. I hear what my hon. Friend says—I am talking about the merits of amendment 284, but will get to amendment 6 in my closing comments.

On amendment 284, if a doctor has doubts about the capacity of an applicant, it is good practice to refer that person to a doctor with specialist expertise in that field. That would be true if the doctor was assessing the capacity of a patient to take any important decision, and is surely especially true when we are talking about a decision of this importance. I accept that people will have different views on amendment 6, when we get to it, from those they hold on amendment 284. Amendment 284 would put a duty on doctors to do something that is good practice. Most doctors in most circumstances would do it anyway, but in some cases, some may not. My hon. Friend the Member for York Central, who tabled this amendment, believes that we should write this law as tightly as possible so that doctors have that duty.

Amendment 294, which was tabled by my hon. Friend the Member for York Central, would require the doctor to base their assessment on provided evidence. Again, that is something that most doctors would do anyway in the extremely serious circumstances of a person’s applying for assisted death.

Many laws that we consider in this House relate to things that we are familiar with and understand well; but as my hon. Friend the Member for Bradford West said last week, some laws, such as this one, concern new matters. They are about things to which we need to give due consideration, as we are doing in scrutinising the Bill, because we need to understand the issues that arise. Those laws can introduce powers that could be dangerous if not properly safeguarded. This Bill, as has been accepted, needs strong safeguards. The aim of my hon. Friend the Member for York Central in tabling this amendment was to spell out that a doctor’s assessment of someone seeking assisted dying should be based on evidence. That would make it much less likely that any doctor would not pay sufficient attention to evidence they were presented with.

Lastly, as my hon. Friend the Member for Spen Valley knows, I am a long-standing of supporter amendment 6—I was in that base going into Second Reading. Alongside my concerns about clause 3, which she has heard at length, this matter was a key concern of mine going into Second Reading. I was therefore an early supporter of this amendment to change the wording around the referral from “may” to “must”. That was discussed on Second Reading. I do not want to speak for my hon. Friend, but I think she shares similar views to mine on the matter and suspect that the matter may be supported when we get to that debate.

[Jake Richards]

I will be brief. I will talk about my amendment 280, which I will not press to a vote. There remains an area that needs more exploring in this legislation—it has come up in debates already, but needs to be looked at further—namely, that a person may have capacity but have other mental health conditions that may impair their judgment. In those circumstances, a more thorough assessment than the two-doctor stage there is at the moment would be right. In reality, that is very likely to happen under the current structure of the Bill. My amendment simply attempts to make sure that it is mandatory. Having had discussions with my hon. Friend the Member for Spen Valley, I know that she is sympathetic to that.

There are amendments in the next group that aim to do the same thing. They, along with my amendment, may not be quite right. I urge the Government to look at this issue and see how we can work together to come to a conclusion, because I think that all members of the Committee would want that. I also support amendment 6, as I think everyone does.

--- Later in debate ---

[Kim Leadbeater]

I will do the easy bits first. As the Minister said, amendment 370 in my name is a drafting change to the definition of a psychiatrist, which is obviously very important. These useful amendments have enabled us to have this discussion, and they all come from a good place in trying to enhance safeguarding within the Bill.

On organ donation, my sister-in-law has had two kidney transplants. On neither occasion, to my understanding, did a psychiatrist speak to either her or the organ donor, who in one instance was her brother—my sister-in-law would be very upset that I have mentioned her in Parliament. My understanding of the law is that someone may be referred to a mental health specialist. I am happy to be corrected if that is not the case, but I do not think a consultation with a psychiatrist is compulsory.

As I said to my hon. Friend the Member for Stroud, it is absolutely right that we support amendment 6. From the start, I have been clear that we should move from “may” to “must” in referring to a psychiatrist where either doctor has any doubt. That is a sensible approach, and it covers most of today’s discussion.

However, introducing a whole new system that would almost sit alongside the Bill, and that would change the process, is unnecessary. Those are my conclusions, based on what has been another very interesting discussion.

[Daniel Francis]

I will not come back on anything but, obviously, I will press some of these amendments in due course.

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 294, in clause 7, page 4, line 5, after “doctor” insert

“based on provided evidence that”.—(Daniel Francis.)

This amendment would require that the doctor bases their assessment on provided evidence.

Question put, That the amendment be made.

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

Daniel Francis Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Rebecca Paul (Reigate) (Con)]

I rise to speak briefly to amendments 413 and 414, which are very thoughtful and well-considered amendments. I thank the right hon. Member for Dwyfor Meirionnydd for setting out powerfully and persuasively the importance of the subject. I support the amendments, but in reality we probably need to go further by specifying exactly who would be interpreting and making sure that it is regulated reliably. We do not want just anyone coming in off the street and doing that. That would not be appropriate, so we need to think about whether we need to go further. However, the amendments are a great starting point and would move us closer to where we need to be.

There is much subtlety in this debate. We talked a little in the first week of this Committee about the importance of language and the words that are used. We always need to be cognisant that when we are imparting information to people, particularly in a healthcare context, it is vital that we use language that people understand so that the ramifications of what is being discussed are clear. That is where these amendments become really important, because for those for whom English is not their first language, some of the subtlety and nuance around what a term means could be lost. Interpreters could be an important part of adding the clarity required to ensure that everyone going through the process understands exactly what it involves.

A 2024 Nuffield Council on Bioethics survey found that 39% of people think that assisted dying means withdrawing life support, 19% think that it means providing people who are dying with drugs that relieve symptoms of pain or suffering, and 13% think that it means providing hospice care. That echoes our debate a couple of weeks ago about how assisted dying can be interpreted in quite a few different ways. It is really important that we are clear in the language we use and what we mean by it.

We also find that among ethnic minorities there is sometimes a greater misunderstanding about palliative care. A 2024 King’s College London survey found that 6% of people believe that it is accurate that palliative care involves giving people medicines in order to shorten their life, but 18% of ethnic minority groups think that. We need to be cognisant of that. While 18% of people trust healthcare providers “not very much” or “not at all” to provide high-quality care towards the end of life, that figure increases to 30% for ethnic minority groups. While 6% of people say they have not heard of palliative care, that increases to 22% of people in ethnic minority groups.

It is important to recognise that the text of the amendment is much less stringent than that of section 7 of South Australia’s Voluntary Assisted Dying Act 2021, which strictly regulates interpreters. That goes back to my initial point. Under the South Australian law, they must be

“accredited by a prescribed body”.

They cannot be a family member, cannot stand to benefit from the will and cannot be involved in the patient’s healthcare. It is really important to ensure that a recognised professional is involved in this most important of processes and information sharing.

I support the amendments, although I think they need to go a little further. I look forward to hearing what other hon. Members have to say.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I echo the points that have been made about the importance of the initial conversations, particularly for those who do not have English as their first language. I made a commitment to my hon. Friend the Member for Ipswich that in his absence I would press amendments 414 and 415 to a Division, as he requested.

I support the general principles of the amendments relating to those who are seeking or who need interpretation to explain aspects of assisted dying to them. I support the merit of that principle and the intention behind amendments 414 and 415.

[Naz Shah (Bradford West) (Lab)]

Like the right hon. Member for Dwyfor Meirionnydd and the hon. Member for Reigate, I will not press the amendments to a vote, but I certainly want to speak to them. I do not think that they go far enough. Let us put ourselves in the position of people of colour: if the English language is seen as superior to or more powerful than Welsh, that means an extra layer of intervention that I do not think the amendments quite capture. We have not even talked about British Sign Language in our discussion of languages, but it is also really important.

I am a qualified interpreter from Urdu to English—in health, funnily enough—and I can tell the Committee that in Urdu there is not even a word for depression. The word for depression does not exist. In a previous life I chaired the largest mental health charity outside London for ethnic minority communities, and I am a former NHS commissioner, so when we talk about health inequalities and patient intervention, I understand acutely the nuances involved in translating from one language to another.

In the first instance, there is a language that someone does not understand. In the second instance, particularly for minority communities who speak languages from the south Asian subcontinent such as Punjabi, Urdu or Hindi, the words do not exist to translate the Bill literally or to talk about assisted death. That speaks to the point that the hon. Member for Reigate made about understanding what it means. I have the same stats that she cited, which show that people do not understand what assisted death is.

I would really value a response from the Minister and from my hon. Friend the Member for Spen Valley to these questions about the nuances of having such a difficult conversation. These are really brave conversations, both on the doctor’s side and on the patient’s. Take a woman from an ethnic minority background whose first language is not English and whose doctor is unable to translate their conversation with her. Would that conversation be disempowering? Would it be empowering? Would we be doing a disservice to that person, with the best will in the world from the doctor? I really would like to understand what consideration is being given to making this accessible, if it is to be a service and a piece of legislation that is open equally to all.

I have mentioned this point a few times and have raised it with the Minister, and I appreciate that the Minister has responded, but this is where my frustration—for want of a better word—comes from about not having an impact assessment in the first place. If we had had an impact assessment, the Government would have looked at these things. Even with small Bills, we go out to consultation for weeks and weeks. With this Bill, we have not spoken to anybody during Committee stage about the nuances of the provisions on languages and what they will mean for patients. Although I support the essence of what the amendments are attempting to achieve, they fall short of providing the necessary protections. I do not know how the Government will address that.

--- Later in debate ---

[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.

[Daniel Francis]

It is a pleasure to serve under your chairmanship, Mr Dowd. I note that my hon. Friend the Member for Spen Valley has said that she is minded to accept amendment 341. I will, however, still briefly speak to amendment 338 and new clause 13, which stand in my name.

The British Medical Association has said that it strongly urges MPs to support the amendments, which would remove the referral requirement in relation to preliminary discussions and establish an official body to provide factual information to patients about the range of options available to them. As the hon. Member for East Wiltshire mentioned, Dr Green, in his oral evidence, said:

“The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q37.]

He went on to say:

“I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q40.]

He also said:

“The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q41.]

The BMA’s position is that the proposal is analogous to doctors’ professional legal obligations regarding abortion, and consistent with the Bill’s inclusion in clause 23 of a right to refuse, for any reason, to carry out activities directly related to assisted dying. It has said:

“In tandem, we believe creating an official body to provide individual information and advice to patients, to which doctors could direct (rather than refer) patients, would ensure that the doctor’s views are respected, whilst also—crucially—ensuring that patients can easily access the information and support they need. Currently, whilst the Bill acknowledges the need for accurate, impartial information and advice for patients, it gives no indication of how this might be delivered—generic published information would not be sufficient. Patients would need individual advice, guidance, and support so that they can make informed decisions, and an independent information service could meet this need.”

As the hon. Member for Reigate mentioned, a member of the Royal College of General Practitioners also said:

“The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 279, Q365.]

He went on to say:

“Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q354.]

Therefore, I commend amendment 338 and new clause 13 to the Committee.

[Naz Shah]

It is a pleasure to follow my hon. Friend the Member for Bexleyheath and Crayford. I rise to speak to amendment 287, tabled by my hon. Friend the Member for York Central. Clause 4(5) currently says:

“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner whom the first practitioner believes is willing and able to conduct that discussion.”

If this amendment was to be adopted, it would read:

“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner who is qualified to undertake such a preliminary discussion, and set out palliative medicine options to provide the patient with appropriate end of life care, including referring them to a palliative medicine expert.”

Put simply, the amendment would mean that if a doctor met with a patient with a severe illness who might die within six months, but the doctor was themselves unwilling to have an initial discussion on assisted dying, they would still have to refer the patient on to a doctor who was willing to have that discussion. The patient’s decision to explore assisted dying would not be obstructed; the main change would be that that doctor would now have to discuss palliative care options with the patient. That is surely a measure that would increase the patient’s welfare.

Let us think about the kind of patient who can apply for assisted dying. They must have a diagnosis of a serious illness and a prognosis that they are likely to die within six months. The Bill’s supporters have said many times that they are worried about any changes that will reduce the autonomy of people seeking assisted death. This amendment quite obviously does not in any way reduce people’s autonomy, nor does it in any way place an unreasonable burden upon doctors. If a patient has a diagnosis of a serious illness, and if they have themselves asked for a conversation on assisted dying, then it surely must be good practice for that doctor to discuss palliative care options.

It is also only good practice that one of those options would be for the doctor, if the patient wishes, to refer the patient to a palliative medicine specialist who is more able to talk about such options. That means that the amendment would not place any undue burden on either the doctor or the patient. The doctor ought to be offering such advice on palliative care. The patient may or may not decide to take the doctor’s advice on palliative care, but they have had it, and the patient may well benefit from having had advice on palliative care.

Given the conversations we had this morning, I can foretell one objection to this amendment: that since good doctors will do this anyway, it is unnecessary to have a provision on the face of the Bill to ensure it. This seems to me a very weak objection. Let us be honest, the doctors that we have in this country are of extremely high quality. They are dedicated, skilled and compassionate men and women. We are lucky to have them, but we cannot say that every doctor participating in all the processes that they currently undertake always follow best practice.

Similarly, we simply cannot say that in any assisted dying process doctors will always automatically follow best practice. People make mistakes. That includes people who are highly trained and extremely compassionate. I would be astonished if we could find a doctor who said they had always got everything right. As lawmakers, we have to guard against the fact that even some of our most admired professionals can and sometimes will make mistakes. One way that we will guard against that is to set out duties that they have to follow. This amendment does just that.

I hope that we will not hear the objection that we have heard to a great many good amendments: that it will somehow make the Bill more dangerous by adding complications. The amendment simply adds a small step, by placing a duty on a doctor to give palliative care advice to a patient with a diagnosis of serious illness. Surely the Bill cannot be so lacking in robustness that such a small change would make it dangerous.

In summary, the amendment is a sensible change. It would in no way block the ability of adults who meet the conditions set out by this Bill to explore assisted dying, nor would it place any burden at all upon doctors. It would simply place upon them a duty to follow what we can all surely agree is best practice, and it would greatly improve the early access to palliative care advice for patients with a diagnosis of serious illness. That would improve those patients’ chances of receiving good palliative care. I therefore urge hon. Members to support the amendment.

--- Later in debate ---

[The Chair]

For Members’ benefit, as we are coming towards the end of the debate, let me say that I want people to be able to express their opinions as widely as possible, but it is also my responsibility as the Chair to ensure that that is contained within the parameters of our rules of debate.

[Daniel Francis]

Thank you for letting me speak, Mr Dowd. I will be brief.

As we reach the end of our debate on clause 4, I regret some of the decisions that we have made. I welcome the fact that in due course we will discuss amendment 418, in the name of my hon. Friend the Member for Spen Valley, which also relates to the preliminary conversation. My concern remains that it is “a” preliminary conversation, not, in my determination, “the” preliminary conversation. My amendments would have meant that “the” preliminary conversation could not be held before someone is 18. As I read amendment 418, someone could have preliminary conversations before they are 18; it is just that it will be recorded that there was a preliminary conversation after they turned 18. I regret that, as clause 4 now stands, the paperwork and initial discussion must be completed after someone is 18, but that will not necessarily apply to a preliminary conversation.

Equally, I have some regrets in relation to learning disability issues. I welcome the commitment from my hon. Friend the Member for Penistone and Stocksbridge on the amendment that she aims to bring forward, but I am conscious that it is not on the amendment paper for everybody to see. Just as she committed to work with me, I will continue to work with her on bringing it forward.

We have debated clause 4 long and hard, but I do believe that we have a clause that has loopholes in relation to people under 18 and to people with learning disabilities and autism. I will not press it to a Division, but I regret the fact that we have reached this place.

Question put and agreed to.

Clause 4, as amended, accordingly ordered to stand part of the Bill.

Clause 5

Initial request for assistance: first declaration

[Sarah Olney (Richmond Park) (LD)]

I beg to move amendment 271, in clause 5, page 3, line 5, at end insert—

“(1A) A person may not sign a first declaration within six months of being diagnosed with a condition which meets the requirements of section (2)(1)(a) unless they have received a psychosocial intervention in relation to their diagnosis with that condition.

(1B) The Secretary of State may, by regulations, create exceptions to the provisions of subsection (1A).

(1C) Regulations under subsection (1B) are subject to the affirmative procedure.”

This amendment would create a requirement that the person must have received a psychosocial intervention if a terminal diagnosis was received less than six months ago. The Secretary of State would be given a delegated power to create exceptions to such a requirement with regulations subject to the affirmative procedure.

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

Daniel Francis Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

I completely agree with the hon. Member.

Coming back to the physicians who justified eligibility by citing the physical complications of anorexia, not just the mental disorder itself, we know that in all 60 of the cases that have been cited, the person did not have a terminal illness other than the one that was caused by anorexia, because that then fit the definition. Under the Bill, the same could happen here. I say in response to the hon. Member for Richmond Park that eating disorders or substance use disorders could still qualify if a doctor determines that the resulting physical deterioration meets the criteria for terminal illness. I will speak to anorexia in much more detail when we debate a further amendment that I have tabled.

Amendment 181 would also remove references to the Equality Act and the Mental Health Act, and the Bill would not define disability or mental disorder. That raises serious concerns, so I will not support the amendment. I encourage Committee members to strengthen the Bill in this regard and not weaken it. The Acts define mental illness and disability as taking a clear medical model, and again it is not clear whether my hon. Friend the Member for Spen Valley is further suggesting that a new definition should be used—but I am going over ground that I have already been over.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

The amendments before us have left me in a significant quandary, as some Members are aware. I am concerned that while their proposers are genuinely seeking to improve the Bill, legal loopholes may remain.

Prior to Second Reading, the Equality and Human Rights Commission produced a briefing note on the Bill. It included a section relating specifically to discrimination and equality considerations, which stated:

“It may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability. Parliament should note that the exclusion of disability as a standalone criterion for accessing assisted dying does not mean that the rights of, and protections for, disabled people do not need to be considered in relation to this bill.”

I note that amendment 181, tabled by my hon. Friend the Member for Spen Valley, seeks to clarify these matters, but I remain concerned that, with its reference to

“only because they are a person with a disability”,

it would retain the ambiguity that she is seeking to remove. I understand the legal advice that she has received on this matter. My view is that although the amendment would remove the reference to the Equality Act, that Act still sets out that disability is one of the specified protected characteristics. Paragraph A9 of the Government’s guidance on the Equality Act reads:

“The Act states that a person who has cancer, HIV infection or multiple sclerosis (MS) is a disabled person. This means that the person is protected by the Act effectively from the point of diagnosis.”

I remain concerned about this point. I have previously raised my concerns about the language used on Second Reading and, if I had spoken then, I would have raised this point. We have heard throughout the Bill’s passage that being a disabled person does not make someone eligible for assisted dying, but I have just diagnosed three disabilities in the Equality Act that may or may not be eligible under this Bill.

[Danny Kruger (East Wiltshire) (Con)]

The hon. Gentleman is making a very important point, and he picks up the observation by the hon. Member for Bradford West that there is a link, through the Equality Act, with disability. It is absolutely right that we address that. Does he agree that the way to do so is not to accept amendment 181 tabled by the hon. Member for Spen Valley, which would retain the dangerous words “only” and “for the avoidance of doubt”, but to accept amendment 11, which would exclude those words and ensure that someone could not get an assisted death by reason of disability or mental illness? Because of that concern, perhaps we need to table a further amendment to exclude the Equality Act from the operation of this clause, and I await the Chair’s ruling on whether that is possible at this stage. Amendment 181 does not refer to the Equality Act, although the Bill does, so we should follow that point. Rather than accepting that amendment, which would not move us forward, we should accept amendment 11. I hope that that is clear and that it might satisfy the hon. Gentleman’s concern.

[Daniel Francis]

I will return to that. I understand what amendment 11 seeks to do, but I think we should have a hybrid, because I do not think either amendment would completely achieve what we want. I will seek the Minister’s advice in due course. I understand the legal advice to my hon. Friend the Member for Spen Valley on this matter, and I understand that all the amendments have been tabled in good faith, but I am concerned about the loopholes that could remain.

We heard on Second Reading that assisted dying will not be available to disabled people, but let us imagine an individual who does not consider themselves to be disabled. If they were diagnosed with cancer tomorrow, our current legislation states that they would be disabled from the point of diagnosis. They could live with that cancer and receive treatment for a considerable time, while continuing to have no other disability. When they receive a six-month prognosis, they would be eligible for assisted dying due to the same disability they have had for a very considerable time, and it would remain the only disability they have had in their entire life. I remain concerned that my hon. Friend’s amendment still talks about disability, potentially leaving that loophole.

[Kim Leadbeater (Spen Valley) (Lab)]

My hon. Friend makes an interesting point, but the purpose of the Bill is that a person with a terminal cancer diagnosis and six months left to live would have the choice of assisted death. As we have heard, they might have seen the suffering of relatives with a similar cancer, and they might have seen what their death looked like. I understand that people might disagree, but that is the purpose of the Bill.

[Daniel Francis]

I hear that point but, looking at my postbag, the people who berate me for not supporting the Bill often talk about their loved ones with motor neurone disease or Parkinson’s, which I understand from oral evidence will be exempt. We need to make it clear which disabilities and conditions will be eligible, and I am not sure that the amendments before the Committee nail it down. I am concerned that the wording would lead to potential loopholes and legal challenges.

We should still be concerned about legal review of the Bill, based on indirect disability discrimination. The Equality Act says that indirect discrimination happens when a rule, a policy or even a practice that applies to everyone disadvantages people with a particular disability, compared with people who do not have that disability, where that cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way.

If we accepted this amendment to allow the inclusion of cancer and some other disabilities set out in the Equality Act, I believe it would be argued in due course that other disabilities meet the criteria for assisted dying and, despite the promises made to this Committee and to the House in good faith, the loopholes would allow the criteria to be widened.

Other amendments in this group retain the reference to the Equality Act 2010, which could equally result in legal challenges down the line, for the reasons my hon. Friend the Member for Spen Valley outlined this morning. I am not deliberately being difficult, but I am not sure that any of the amendments would completely achieve what they seek to achieve.

I await the Minister’s view on the matter but, as things stand, I am concerned that we will take the clause back to the House without completely satisfying Members’ aims. By allowing those with cancer to seek assisted dying, there could be a loosening of the rules for other disabilities. I fear there could be manuscript amendments on this matter, but I await the Government’s view on the robustness of these amendments if they were to be accepted.

[Lewis Atkinson]

I want to come back to the Bill as drafted. The key factor in clause 2, for me, is the focus on terminality. That is what determines eligibility: that death is reasonably expected within six months. The clauses that we are discussing, subject to amendment, merely clarify—rightly, because this is important, and I too will wait to hear the Government’s guidance—that solely having a disability or a mental disorder does not in itself provoke eligibility. I fear that we are overcomplicating matters; the focus on terminality is in the name of the Bill. It is the Terminally Ill Adults (End of Life) Bill, and that is what we are focusing on today. I urge Members to think about that point when they consider the amendments, including amendment 181 from my hon. Friend the Member for Spen Valley.

--- Later in debate ---

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

It is an honour to serve under your chairmanship, Mr Dowd. I speak in support of amendment 234, which is tabled in my name and seeks to ensure that people suffering from neurodegenerative conditions are not excluded from the dignity and autonomy that the Bill seeks to provide. The amendment would extend the eligibility period for those with neurodegenerative conditions from six months to 12 months—a simple yet crucial change that could alleviate needless suffering and ensure fairness in our approach to end of life care.

The intention of the amendment is to change the law to match that in five of the six Australian states. The wording mirrors that found in those jurisdictions. Conditions that would be affected by the change include motor neurone disease, Huntington’s disease, multiple system atrophy, progressive supranuclear palsy, Parkinson’s and many others. Although Alzheimer’s is a neuro-degenerative condition, those with Alzheimer’s would not be eligible for an assisted death should the amendment pass because they would not have the mental capacity.

[Daniel Francis]

Does the hon. Gentleman agree that those with early-stage dementia or Alzheimer’s could pass the mental capacity test in the Mental Capacity Act 2005?

[Tom Gordon]

They would need to come within the definition of a terminal illness. I will come that later in my speech.

We must recognise the reality of neurodegenerative diseases. There are other conditions where prognosis follows a clear trajectory. People with conditions such as MND and Parkinson’s experience a slow but relentless decline. Their suffering can be profound long before they meet the six-month prognosis requirement that is currently in the Bill.

Let us look at some real-life stories. Mary Kelly is a bright and sharp-witted woman from Middlesbrough. Diagnosed with Parkinson’s last year, Mary knows that she faces many years of deterioration. She said:

“It would make the world of difference to know that assisted dying was legal and available. I’d know if I’m not finding joy, I can end it peacefully. It would make the intervening years so much more peaceful, loving, and relaxed.”

Parkinson’s-related dementia affects a third of those with the condition. If Mary loses capacity before a doctor confirms her eligibility, she will be denied the very right that the Bill aims to uphold. If we do not amend the Bill, people like Mary will lose their autonomy precisely when they need it most.

We must also consider the experience of people like Phil Newby, who was diagnosed with MND a decade ago. Phil fought to challenge the UK’s ban on assisted dying, taking a case to the High Court in 2019. He is the last living person who took one of the court cases involving assisted dying. Phil knows that the uncertainty of prognosis leaves too many in limbo. He said:

“People with neurodegenerative diseases often suffer a cognitive decline in the later stages. Twelve months would give a much greater chance for a civilised death to those suffering from the most devastating illnesses.”

We must ensure that those voices are not ignored in this conversation.

Imagine a scenario in which someone with MND applies for an assisted death. They tell their friends, family and loved ones. They begin to make preparations, including signing the written declaration, but they cannot get approval until a doctor says they have six months left. They wait. Their condition gets worse. They suffer choking fits, have feeding tubes fitted, and experience a slow and cruel deterioration. Finally, they receive approval from the first doctor, but before they can get to a second doctor, they begin to lose capacity. They are still suffering. Their family know their clear and settled wish, but they have no chance of a second approval, and especially no chance of approval from a panel. They will be potentially consigned to a death of agony and pain, despite everyone knowing that it is not how they would like to die. Their family must watch on, helpless.

The loss of competency is one of the greatest fears for those with neurodegenerative conditions. The Bill currently states that a person must have full mental capacity at the time of their assisted death, which is an important safeguard. However, people who develop MND can have their decision making impaired, and around 50% experience some form of cognitive decline. In New Zealand, where there is a six-month limit, many people lose their decision-making capacity before they can proceed. By contrast, in Victoria in Australia, where there is a 12-month limit for neurodegenerative conditions, only 7% lose competency. If we do not amend the Bill, we risk condemning those people to a fate they fought to avoid.

We must also recognise the difficulty in predicting life expectancy for those with neurodegenerative conditions. Prognosis is not an exact science. I am fairly sure that everyone agrees on that—people have made those points repeatedly. The Court of Appeal has acknowledged that a six-month prognosis cannot be made with certainty for many terminal illnesses. That is one of the most difficult things that I have had to grasp as part of the Committee. To impose what could seem like an arbitrary threshold on those with unpredictable conditions is unfair and unnecessary.

Moreover, let us look at international examples. Many UK residents who have to travel to Switzerland for an assisted death do not have six months or less to live. If we end up with a six-month limit, we will still see people having to travel to Switzerland or other jurisdictions to ensure that they have access to an assisted death. I worry how people in this country would feel about that —particularly those families who might wish to accompany their loved ones on that journey, with the legal consequences that could follow.

Recent polling shows that two thirds of Brits support an amendment that would allow people with neuro-degenerative diseases access to an assisted death. We know that 85% of people living with multiple system atrophy who gave their views in an MSA Trust survey support such a change in the law. This is not a minor or niche concern. Every year, motor neurone disease alone kills 2,200 people in the UK, which is six people per day. Some 45% of people living with MND say they would consider an assisted death if the law changed. It is not a hypothetical scenario: these are real people, making real choices about how they wish to live and die.

My amendment would not overload the system. Experience from overseas tells us that jurisdictions such as Victoria and other Australian states already have a 12-month system for neurodegenerative conditions, and it works. New Zealand, which maintains a six-month limit, has seen people unable to qualify, and is looking at what it can do to ensure greater access. We must also listen to the written and oral evidence from expert witnesses. Professor Meredith Blake and Chloe Furst testified to the importance of a 12-month eligibility period, not just for fairness but for the practicality of allowing patients to navigate the process in time.

Everyone wants to see a Bill that is about dignity. If it is truly about that, we must ensure that it works for those who need it most. It is not about opening the floodgates or trying to expand the criteria. It is about ensuring equal access. From speaking to colleagues across the Committee, I know that a lot of thought and consideration has gone into this issue. With that in mind, I will not push the amendment to a vote, but it is important that the voices of people with neurodegenerative diseases are considered as part of the process.

Oral Answers to Questions

Daniel Francis Excerpts

Tuesday 11th February 2025 Commons Chamber

[Wes Streeting]

The hon. Gentleman hit the nail on the head when he mentioned the importance of evidence-based treatment. As part of the Government’s shift from hospital to the community, from analogue to digital and from sickness to prevention, the NHS absolutely should be in this space, and we are considering those issues as we develop our 10-year plan for health.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

The NHS South East London integrated care board provides services to my constituents, and I have discussed some ways in which we could better deliver services by redeveloping the Erith community hospital site in Northumberland Heath. Is the Minister able to provide an outline of the Government’s plan to provide capital funding for expanding community services like those at Erith hospital?

[Stephen Kinnock]

I would be delighted to meet my hon. Friend so that we can get into a bit more detail about what is happening in his constituency, but he is absolutely right to point to the need for more and better community health services. That will be at the heart of our shift from hospital to community in the 10-year plan that we are delivering.

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

Daniel Francis Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Dr Tidball]

Q Thank you. That is extremely helpful. Clause 2(3)(a) and 2(3)(b) cover the point that you made about those groups, stating:

“For the avoidance of doubt, a person is not to be considered to be terminally ill”

just by those statuses.

I am very interested to hear about the implementation taskforce. I am personally keen that if the Bill passes into law, we monitor the impact on disabled people on an ongoing basis. Do you have any recommendations for how we can ensure that disabled people have a strong voice in that process, to keep the provisions in check and understand the impact, if any, on the culture within the NHS and other services?

Dr Mewett: Only that if there is an implementation taskforce—most legislation requires an implementation period; in our case, it was 18 months—a strong disability advocate is involved in it.

Dr McLaren: It would be to plant the seed of funding for research throughout the implementation and early stages of voluntary assisted dying legislation. Conducting qualitative research particularly in this area would be very revealing, to understand not only everyone’s reasons for applying for voluntary assisted dying but also those of marginalised groups and whether there are any other factors influencing their decisions.

That also extends to research conducted in culturally and linguistically diverse populations. We have a concern about health awareness, and particularly that what we affectionately call our gag clause—whereby our medical practitioners are not able to initiate conversations with patients about voluntary assisted dying—unfairly disadvantages people from culturally and linguistically diverse populations and those who have lower levels of health literacy in accessing information about the care available to them and their health options. We feel that that comes mainly from discussions with general practitioners. Not allowing those general practitioners to discuss the options with them certainly does not do them any favours.

Dr Fellingham: Both my colleagues have made excellent points that I was going to make. I think they have covered it very well.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

Q Yesterday, we heard from some clinicians from the USA, who outlined how they have reviewed the scheme in practice. They said that their waiting period between the two clinician appointments has been reduced from 14 days to 48 hours, and that in some cases the second clinician has been removed and replaced by a nurse practitioner. Have you undertaken a similar review? Have you made any changes as a result?

Dr McLaren: We are undergoing our review at the moment. It was meant to commence after the first five years of operation of the Voluntary Assisted Dying Act in Victoria. That review has yet to be tabled or published. Certainly, the recommendations that we have submitted to it involve reducing or removing the so-called grace period, or waiting period. My experience, and that of an almost homogeneous group of practitioners, is that patients serve their own lock-out periods, grace periods and periods of reflection, as I believe you have called them, before applying. Subsequently, there are several logistical pauses throughout the process, which also instigate their own grace periods. The addition of further periods for reflection is, I think, superfluous and unnecessary.

Secondary to that, in all our Bills and Acts, we have an ability to bypass those waiting periods. Forgive me if I am wrong, but I did not see the capability to bypass any of those in your current Bill. If the person has a prognosis of less than seven days, they should be able to be expedited and not serve that time. I do not see the purpose of putting extra time on these people to apply for this.

I always say that people do not know that they have six months to live until they have six weeks to live. We as oncologists do not know that either. In a matter of one CT scan, we can change a person’s prognosis from 18 months to three months. All of a sudden, they start thinking about how they see their life ending, and then they have to engage in a process of application. Out of that three-month period, it might take a month to apply. My recommendation has always been to increase the prognostic eligibility criteria from six months to 12 months and to remove waiting periods, which patients will place on themselves regardless of the legislative requirements.

[The Chair]

Dr Mewett, you are nodding.

Dr Mewett: Yes—not nodding off, you will be pleased to know.

[The Chair]

It is not that late yet.

Dr Mewett: As I am a member of the Victorian VAD review board, as well as being here as a palliative care practitioner, I want to give you an insight. The review board is now a statutory body under the Victorian Act. We are in the process of finalising a number of recommendations to our Health Minister to make some adjustments to the law. I am not at liberty to go into detail, but many of those things, such as the gag clause and the waiting period, are really up for challenge. They have been shown not to be safeguards but, in fact, impediments and barriers to equitable and compassionate access to the scheme.

Dr Fellingham: I agree with Dr Mewett. They seem like a good idea, but they do tend to be barriers more than safeguards.

[Daniel Francis]

Q Could I clarify whether there is also a review of keeping two clinicians in the process? We heard yesterday that that is not the case elsewhere.

Dr Mewett: One has to understand that although there are some broad similarities, there are a number of differences state by state, and now the Australian Capital Territory has legislation. In the ACT, they have passed legislation, although it has yet to come into practice, whereby one of the two assessing practitioners could be a suitably qualified nurse practitioner. In all the other states of Australia, each of the assessing practitioners has to be medically trained. Different states have different requirements. There is also, in some states, the ability for a suitably qualified nurse practitioner to be the administering practitioner in the case of practitioner-administered voluntary assisted dying.

[The Chair]

For the benefit of our guests, the next questioner, Stephen Kinnock, is our Health Minister.