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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Stephen Kinnock]

As I was saying, the scope of the term “premises” is unclear. Is it residential property, care home, hospice or indeed hospital? That is one of the challenges with the drafting of the amendment: the scope and definition of the term is not clear.

[Danny Kruger]

We are going to get to the question of the NHS provision, but, surely, if it is the decision of Parliament and the Secretary of State that assisted suicide should be provided through the NHS, then that is what will happen. It might be that there are some trusts that will have some sort of autonomy—to the extent that they can decline to deliver certain services—but, if this is a healthcare treatment that is regulated in that way and if it is to be set out as something that shall be provided by the NHS, surely hospitals will not be in a position to decline to deliver, if they are indeed NHS hospitals. The purpose of these amendments is to protect private and charitable providers. Does the Minister agree?

[Stephen Kinnock]

I agree with the sentiment of the hon. Gentleman’s intervention. The challenge is that the way in which the amendment is drafted could well lead to unintended consequences, because the scope is not clear. If we are not clear what the scope is, it could potentially be exponential.

New clause 23 would prevent regulated care homes and hospices from facing any detrimental consequences for not providing or permitting assistance in accordance with the Bill. This also means that their funding must not be conditional on them providing or permitting such assistance to take place on their premises. As a result, a person who is terminally ill and is residing in a care home or hospice could be asked or required to leave that care home or hospice in order to receive assistance under the Bill, if that care home or hospice provider does not wish to allow assisted dying on their premises.

In such circumstances, the care home or hospice provider would not be able to be placed in any detriment as a result of any action or decision taken. This could engage a person’s right under article 8 of the ECHR. Further, public authorities would not be able to persuade care homes or hospices to provide or permit assistance to take place on their premises by offering additional funding if they agreed to do so. Equally, if a public authority gave funding to care homes or hospice providers in recognition of their agreement to provide or permit assisted dying on their premises, and that provider later decided not to provide or permit the assistance, and spent the funding on other matters, the public authority would not be able to recover the funding if it were given unconditionally.

Clause 23 sets out that no registered medical practitioner or other health professional would be under any duty to participate in the provision of assistance in accordance with the Bill. It also sets out that employees cannot be subject to any detriment by their employer for exercising their right to either participate or not participate in the provision of assistance in accordance with the Bill. Further amendment to the clause will be required on Report to ensure that the opt-out in clause 23(1) and the employment protections in clause 23(2) work effectively alongside the duties imposed on health professionals in other provisions of the Bill as amended in Committee.

I hope those observations were helpful.

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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Stephen Kinnock]

I will pretty much repeat what I have just said to my hon. Friend the Member for Ashford. There is a dividing line, as the Government see it, between assistance and administration. There is a dividing line between making the patient comfortable, enabling the procedure to take place, and the doctor actually putting the substance into the body of the patient. From the Government’s point of view, simply from the position of having a picture of the process in our mind, that dividing line is clear enough in the drafting of the clause.

[Danny Kruger]

I am grateful that the Minister is allowing us to push him on this, because it is crucial. This is the moment beyond which there is no return. He thinks that helping a patient to sit up would be within the scope of the clause. Does he think that holding the patient’s hand and tipping a cup of pills into their mouth would be consistent with the clause?

[Stephen Kinnock]

My interpretation is that it would not be, because if someone were actually tipping the pills into the mouth of the patient, they would be going through the act of putting the substance into the patient. This Bill is founded on the principle of self-administration. However, there are acts such as helping the patient to sit up that are not direct administration but assistance enabling it to take place. That is where the distinction lies.

[Danny Kruger]

That is helpful, but if the patient were holding the cup and the doctor held their hand to help them tip it into their mouth, it is not clear to me at what point assistance would end and self-administration would begin. I would be grateful if the Minister could explain that. What about the scenario in which the patient’s finger is on the plunger of a syringe and the doctor assists by putting their finger on top of the patient’s and assists them to press the button, adding a little force to that being given by the patient? Does he regard that as within the scope of self-administration, or does that cross the line into directly administering the procedure?

[Stephen Kinnock]

I thank the hon. Member for that intervention. The hon. Member for Solihull West and Shirley pointed out earlier that the scenario that he has just described would constitute more than assistance; it would be moving into administration by the doctor, rather than self-administration. I think that that aligns with the Government’s view, so I refer the hon. Member for East Wiltshire to those comments from the hon. Member for Solihull West and Shirley, who has far more clinical experience than I do.

[Danny Kruger]

I am grateful for that, and I will leave it there, but does the Minister agree that it is incredibly difficult to distinguish who is administering the treatment in that scenario? If both their hands are on the instrument, whatever it is—a cup, a syringe or a button on a computer screen—it is very hard to know who has actually delivered the final act.

[Stephen Kinnock]

What is hard to do in this Committee is imagine and agree on how many different scenarios there can be. Every circumstance and every individual experience will be different, so it is difficult for us to envision all the different scenarios. Nothing about this is easy, of course. We would not have been sitting in this Bill Committee for hours on end if it were all easy, but from the Government’s point of view there is a clear enough distinction between assistance and self-administration. As long as we are clear on those basic principles, we feel that that gives enough safety to the Bill and enough clarity around the process.

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[Stephen Kinnock]

My hon. Friend will have noted that a number of amendments have been drafted in collaboration with the Bill’s promoter, my hon. Friend the Member for Spen Valley. I think that demonstrates that when the Government have seen a lacuna, a lack of clarity or ambiguities in the Bill, officials, along with the Justice Minister, my hon. and learned Friend the Member for Finchley and Golders Green, and I, have worked with my hon. Friend to table amendments to tighten up the Bill. We are doing that in areas where we feel that ambiguity exists. However, when we feel that the Bill, as drafted, does not give rise to such concerns, our position on the amendments is according to our position vis-à-vis the current wording of the Bill.

[Danny Kruger]

The Minister said that the Government find it impossible to understand the word “complications” —that it is too complex and full of ambiguity. Yet in clause 9 of the Bill, we have that very word. The suggestion is that the doctor should

“discuss with the person their wishes in the event of complications”.

Is that unclear? If not, what is the difficulty with specifying “complications” in clause 30?

[Stephen Kinnock]

The challenge with amendment 436 is that the policy intent is not as clear as it is in clause 9. That clause is about conversations in advance of decisions about committing to the procedure, whereas when it comes to complications that have arisen in a rapid and fast-moving situation, the view of the Government is that it is adequate to rely on the professional judgment of the medical practitioner to take the decision that best suits that situation.

One is a conversation that can be explored between the clinician and the patient in advance, in a managed environment; the dialogue can take place in a considered manner. The second situation is one in which there is a particular physical manifestation and it is up to the clinician to take a rapid position and to decide, according to all the elements that they usually use, such as the GMC’s “Good medical practice”, other codes of practice and their own professional judgment.

[Danny Kruger]

The Minister suggests that it is appropriate for the patient to give some advance indication of what should be done in the event of complications, but that it would not be right for Parliament, too, to give advance direction of the sorts of responses that would be appropriate in the circumstances.

I am afraid that I do not understand the Minister’s distinction. Either it is possible to set in advance the sorts of responses that would be appropriate in the event of complications—the word “complications” is already in the Bill, so is clearly acceptable—or it is not. In the event of complications arising when the patient has not given clear instructions in advance, surely it is appropriate for the doctor to be able to rely on guidance, whether that is in the Bill or set out by the Secretary of State subsequently.

There needs to be clarity about what to do because, to repeat the point, this is not normal medicine—a fatal drug has been introduced into the body. That is not a normal medical situation in which a doctor just uses their clinical judgment; the only appropriate clinical judgment in such circumstances is to attempt to save the patient’s life, because that is what doctors are supposed to do. But we are telling them that they have been allowed to help a patient to die artificially. In that circumstance, what are they supposed to do when that is clearly not working?

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[Danny Kruger]

I rise to speak to amendment 440, which stands in the name of the hon. Member for York Central. I echo the points made by the hon. Member for Banbury. Surely it is the case that the interventions made by a medical practitioner in response to the procedure failing, and the timing of those interventions, must be properly recorded. Should the procedure fail, the need for record keeping is of significant importance, as with all medical record keeping.

The doctor with the patient should write up the notes, including the times at which they reacted negatively to the procedure, the amount of medication that they consumed, any side effects and any action taken. That is good practice. In other jurisdictions there has been poor record keeping, as I mentioned, when things have not gone according to plan. We do not fully understand what happened in those instances or, more generally, the prevalence of complications in those jurisdictions. That information will be vital if further interventions are required, including emergency care.

Clause 22 deals with two situations: if the person decides not to take the substance or if the procedure fails—the phrase “Other matters to be recorded in medical records” seems a rather innocuous title for a clause that deals with such situations. In fact, I think that is the only mention of the procedure failing in the whole Bill. However, the clause, and amendment 380, simply require the co-ordinating doctor to notify the commissioner that it has happened as soon as practicable. Do we have any sense of when the doctor should judge the procedure to have failed? I would be grateful if the Minister or the promoter could offer a definition of procedural failure. What does that actually mean?

That question arises in other jurisdictions that have assisted dying laws. A 2019 paper by the Canadian Association of MAiD Assessors and Providers said:

“There is no clear cut-off for what constitutes ‘delayed time to death’ or ‘failed oral MAID’.”

At what point does a delayed time to death yield to failure? That question is not just abstract for us; it is a philosophical question in other contexts, but we are required to answer it. That paper goes on to suggest that

“clinicians should decide with patients in advance at what point they will consider inserting an IV and completing the provision”,

which is a rather euphemistic term but we know what it means. That is legal in Canada, but it would not be here, so what happens?

In written evidence, Dr Alexandra Mullock, who is a senior lecturer in medical law and co-director of the Centre for Social Ethics and Policy at the University of Manchester, pointed out:

“The Bill is silent on the precise obligations of the doctor if the procedure fails.”

Clause 18(9)(a)(ii) states that the doctor must remain with the person, but what the doctor should be permitted to do, either in relation to aiding recovery or supporting the person to die after the initial attempt has failed, is unclear. She said:

“During my work with the Nuffield Citizen’s Jury, the issue of what happens if the drugs do not end the person’s life was raised within the evidence presented to the jury, and this became a point of concern for several jurors.”

She also said:

“By not addressing this question within the Bill, it allows doctors to exercise clinical discretion, however, it is arguably legally and ethically preferable to clarify the position and address public concern by including a clause that covers this problem.”

I hope that is helpful.

I will end by referencing the hon. Member for York Central, who tabled amendment 440 and made the case very powerfully. She said that should the procedure fail, the need for record keeping is of significant importance, as with all medical record keeping. I have already said that, but we cannot have too much of the hon. Member for York Central.

[Stephen Kinnock]

Amendment 380 is one that the Government have worked on with my hon. Friend the Member for Spen Valley. As the Bill currently stands, clause 22 sets out that where a person decides not to take an approved substance provided under clause 18 or where the procedure fails, the co-ordinating doctor must record that that has happened in the person’s medical record or inform a registered medical practitioner with the person’s GP practice. The amendment would require that in those circumstances, the voluntary assisted dying commissioner must also be notified.

I turn to amendment 440. As I have just mentioned, clause 22 provides that the co-ordinating doctor is required either to record in the person’s medical records or inform a medical practitioner registered at that person’s GP practice if the person has decided not to take the substance or the procedure has failed.

The amendment increases the requirements on the co-ordinating doctor to document in such cases any interventions made by a medical practitioner and the timing of those interventions. The requirement on the co-ordinating doctor to record interventions following a failed procedure is open-ended in time, which could lead to operational challenges. For example, the co-ordinating doctor would remain obliged to record the medical interventions made by others in response to the procedure failing, even if those interventions took place weeks or months after the event itself. I hope that those observations have been helpful to the Committee.

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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

I will speak briefly to amendment 316 in the name of the hon. Member for York Central (Rachael Maskell). She has tabled a sensible suggestion that if a patient makes a statement after the second period of reflection, there should be an automatic referral to palliative care. We have heard how expected and usual that is anyway, and the hon. Member for Spen Valley has frequently made the point that people who are having an assisted death, or going through the process, are likely to be in palliative care anyway—it is not an either/or. It is important that we clarify that expectation.

It will obviously be the case that the patient is not required to take up the referral, and if the referral already exists, that case is dealt with, but let us be absolutely clear that the decision to take an assisted death is not a fork in the road, as would be my concern. If that is not the case and that, in fact, palliative care and the assisted death process go hand in hand and will be seen as part of an integrated package of support for patients, my view is that we should specify clearly that in the event of a decision to proceed down the road to an assisted death, a palliative care referral should be made.

Bluntly, I want to make this as clear as we can, although I am not sure that we will ever be able to do that fully. It really has to be very plain to healthcare commissioners and managers that there is to be no cost saving as a result of an assisted death referral. I very much doubt that a single commissioner or manager would have that at the forefront of their mind; nevertheless, incentives apply in healthcare decisions. Ultimately, we have a ration system, and resource allocation necessarily is the job of commissioners.

If, as we are saying, a decision to proceed with an assisted death will be in parallel with palliative care, let us make that plain, so that if indeed it is the case that the patient requires the investment of palliative care services—hospice treatment or otherwise, even though, as we know, hospice care is inadequately funded through public money—nevertheless, there is a resource requirement. It is important that we specify to everybody in the system that an assisted death is not a way of avoiding the expense of proper end-of-life care.

I hope that Members will recognise that amendment 316 is consistent with the arguments that have been made consistently by advocates of the Bill, which is that there is not an either/or between palliative care and assisted death, and that, in fact, it is appropriate for patients to be on both tracks simultaneously.

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Ms McVey.

The purpose of amendment 457 is to exclude a person who has less than one month to live from being eligible for the shorter second period of reflection of 48 hours if that person has voluntarily stopped eating and drinking. That person would instead be required to comply with a second period of reflection of 14 days under clause 13(2)(a). The amendment could create uncertainty as to the required length of the period of reflection. It is unclear, for example, if “voluntarily” would include where someone’s appetite has naturally declined as they approach the end of life, and therefore whose decision to stop eating or drinking may not be deliberate.

As I have said previously, the Government have worked with my hon. Friend the Member for Spen Valley on certain amendments to bolster the legal and workability sides of the Bill, and the purpose of amendment 471 is to clarify that the co-ordinating doctor needs to be satisfied that, immediately before witnessing the second declaration, the criteria set out at subsection (4) are met, and not at any time before. That also ensures consistency with the duty on the co-ordinating doctor in respect of the first declaration.

Amendment 316 would require that where the co-ordinating doctor reasonably believes that the person seeking assistance has less than one month to live from the court declaration, they must refer that person for urgent specialist palliative care. As the referral must be made whether the patient wants that referral or not, this may result in unwanted referrals. The effect of this amendment is unclear.

As drafted, clause 13(2)(b) sets out that where the person’s death is likely to occur within one month, the period of reflection is then 48 hours. Amendment 316 sets out that the referral to urgent palliative care must be made alongside the co-ordinating doctor making the statement, which is the last step to be completed before the provision of assistance under clause 18. That would mean that in some circumstances, there may be insufficient time to make a referral before the person is provided with assistance to end their life.

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[Danny Kruger]

The hon. Lady is right, and her point goes to the question that runs through all of these clauses: why? As a Committee, we rejected the obligation on the doctors to ask, “Why are you doing this?” It was suggested by one hon. Member that it was nobody’s business why somebody was trying to take their own life and that if that person qualified, they should be able to summon the agents of the state to provide them with lethal drugs without any question about their motivation.

I agree with the hon. Lady. There is an equal expectation in my mind that doctors should ask the question, “Why are you changing your mind?” I would expect that. The clause could clarify what further referrals would need to be made, if they had not already been; as we have acknowledged, we would expect appropriate care to be provided by doctors anyway.

I conclude with a factual question. Clause 14(1) lets a patient cancel a first or second declaration, but subsection (4) says only that the duties of the doctor stop when a first declaration is cancelled. I would be grateful if the hon. Member for Spen Valley would explain what happens if the patient cancels a second declaration. It strikes me that there would be a need for urgency because if a patient decides to change their mind at that point, that is arguably a more dangerous situation. What would be the obligations on the doctor at that point? Should we read across from subsection (4) that their duties stop in the same way? Perhaps that could be clarified in later drafting, if necessary.

To conclude, my general point is that the issue of a cancelled declaration is about more than the paperwork. Although, of course, we respect the autonomy of a patient to make their own decision to cancel a declaration—obviously, I would insist that that right should be in the Bill—it nevertheless raises a question in my mind: why is that happening, and what should we expect the patient’s medical team, or others, to do in that circumstance?

[Stephen Kinnock]

The Government have worked with my hon. Friend the Member for Spen Valley on amendments 375 and 376. The amendments require that where the co-ordinating doctor, or any registered practitioner from the person’s GP practice, receives a notification or indication from the person seeking assistance under the Bill that the person wishes to cancel their first or second declaration, the doctor or practitioner must inform the voluntary assisted dying commissioner as soon as practicable. Where a registered practitioner from the person’s GP practice has received a notification or indication from the person to cancel their first or second declaration, they must also inform the co-ordinating doctor. I hope those observations are helpful to the Committee.

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[Stephen Kinnock]

I am not a lawyer, but thankfully I am sitting next to a very eminent and distinguished one—my hon. and learned Friend the Member for Finchley and Golders Green—who has confirmed that everything the hon. Member for East Wiltshire said was correct from a legal standpoint, so I shall leave it at that.

Clause 15(5) of the Bill defines a proxy as

“(a) a person who has known the person making the declaration personally for at least 2 years, or

(b) a person who is of good standing in the community.”

Amendment 473 would remove subsection (b) from the definition of proxy, instead introducing a regulation-making power to specify the persons who may act as proxy. That would avoid any ambiguity around the meaning of a person who is of good standing in the community and retain flexibility to amend the specified list in regulations.

[Danny Kruger]

Will the Minister confirm that the Secretary of State could simply reintroduce that ambiguous term at their own discretion? If they are being given the freedom to decide who can be a proxy, they might decide that it should be a term of equal ambiguity. My right hon. Friend the Member for North West Hampshire is absolutely right that I have great respect for the concept of “standing”; nevertheless, I do not believe that the Government have yet been able to define exactly what that means. Does the Minister agree that there is still the opportunity for ambiguity? We are just leaving it completely blank at this stage and hoping that some future Secretary of State will have more clarity than we do.

[Stephen Kinnock]

I would not want to pre-empt the regulations, because clearly that is the point of the process. If this Bill gets Royal Assent, we then move on to making regulations, and I have confidence in the good offices of parliamentary counsel, legal advice and the drafting process. I absolutely agree with the hon. Gentleman, however, that the purpose of those regulations must be to remove ambiguity, not to increase it. I am confident that the system will produce regulations that address his concern.

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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

It is a pleasure to serve under your chairmanship once again, Sir Roger. I am looking forward to this week’s debating.

I want to draw the Committee’s attention to further evidence that has come in since the debate got under way. Since we started the Committee, we have had more than 400 pieces of evidence, so I apologise for not having got to this earlier, but it is relevant. I do not want people who have submitted evidence to us to feel that their submissions have fallen into a black hole and are not being considered, and I think this is significant evidence. We are talking about the necessity of a proper period of reflection, which is acknowledged in the Bill—it is understood that it is inappropriate for people to be able to request and receive an assisted death in very short order. The debate is about the extent of that reflection period. I am supporting amendments that suggest that we need slightly longer in some cases.

I want to refer to two pieces of the evidence that has come in. One is from six palliative care doctors who wrote that

“our experience is that many patients experience a period of adjustment to ‘bad news’ and may say that they cannot live under these conditions. However, after a period of reflection and adjustment, the majority come to find peace and value in their altered life circumstance, in a way they would not have believed possible. This may often take many weeks and sometimes short months. It is our profound concern that the two ‘periods of reflection’…would not allow time for this adjustment. This is even more so the case where these periods of reflection are reduced for patients predicted to have an even shorter prognosis. It is thus a reality that patients and their families may miss out on a period of life they would have valued by seeking to end their lives prematurely, and these days, weeks and perhaps even months will never be regained.”

The other piece of evidence is from Tom Pembroke and Clea Atkinson, who are experts in hepatology and palliative care in Cardiff. They raised the problems of the seven-day reflection period where there is alcohol misuse. I do not think this topic came up in last week’s debate, but it is worth acknowledging because liver disease is the most common cause of death for people in middle age. It is also worth noting that liver disease disproportionately affects the people who are most disadvantaged in our society. These experts say:

“Prognostication in advanced liver disease is challenging as management of the underlying causes, including abstinence from alcohol, potentially reverses advanced liver failure…The neurocognitive and depressive effects of alcohol misuse disorder frequently requires more than seven days to resolve following abstinence. Advanced liver disease frequently manifests with hepatic encephalopathy which can affect the ability to make informed decisions.”

Their concern is that

“A seven-day review period is not sufficient to ensure that there is an enduring wish to die which is not influenced by alcohol misuse.”

Considering the prevalence of alcohol misuse in our society, the extent to which so many people tragically die of it and the difficulties in prognostication, I suggest to the Committee that there is a particular argument to be made for extending that short period at the end for the expedited process that is being considered. I beg the Committee to consider accepting the amendment.

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship again, Sir Roger.

Amendment 301 would prolong the first period of reflection, after which point the independent doctor can conduct the second assessment. In the original draft of the Bill, the first period of reflection is seven days, but the amendment would extend that period to 14 days. That means 14 days would have to pass between the time that the co-ordinating doctor has made their statement following the first assessment, and the independent doctor carrying out the second assessment.

Amendment 317 would increase the duration of the period of reflection before a person may make a second declaration from 14 days to 28 days. It relates to cases where a person’s death is not reasonably expected within one month of the date of the court’s declaration.

Amendments 314 and 315 would increase the duration of the second period of reflection before a person may make a second declaration, in cases where a person’s death is reasonably expected within one month of the date of the court’s declaration, from 48 hours to seven days. They would also introduce a requirement for a mandatory immediate referral for urgent specialist palliative care. The requirement would be introduced into the definition of the second period of reflection. It is unclear what impact it would have on the duration of the period of reflection. The amendments do not say who should be responsible for making the referral or where it should be recorded. The drafting is also ambiguous as to what happens if a person does not consent to such a referral or care.

I hope these observations are helpful to the Committee in considering the Bill and the amendments put forward by various Members. Whether these amendments should form part of the Bill is a matter for the Committee to decide.

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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Danny Kruger]

Will the Minister clarify that point? Is he suggesting that because fewer doctors might be eligible or willing to conduct the preliminary assessment, we should not require it at that early stage?

[Stephen Kinnock]

What we are trying to say is that the important thing here is to ensure that, when the Secretary of State brings the regulations forward, the hands of the Secretary of State are not tied too tightly, so that the Secretary of State is able to bring together the right people, to deliver the right training, to achieve the outcomes that are required through the regulations. Our assessment is that this amendment would, in essence, narrow the pool of people available to do the training. That would seem to pre-empt the idea behind doing this through regulations, which is to ensure that there is up-to-date training that is responsive to where we may or may not be two years down the line from the Bill having its commencement. It is about having that flexibility and that ability to build capacity.

Amendment 340 would place the Secretary of State under a duty to make regulations requiring a co-ordinating doctor to have specific and up-to-date training relating to reasonable adjustments and safeguards for autistic people and people with a learning disability. I note that amendments 185 and 186, if passed, would impose a duty on the Secretary of State to specify the training, qualifications and experience that the co-ordinating doctor will need.

The consequence of this amendment would be to require the Secretary of State to introduce a further requirement on the co-ordinating doctor—to have undergone training relating to reasonable adjustments and safeguards for autistic people and people with a learning disability. In considering whether the amendment is required, I note that the Health and Social Care Act 2008 requires that all CQC-registered health and adult social care providers ensure that their staff receive specific training on learning disability and autism.

Amendment 427 would impose an obligation to take all reasonable steps to ensure that the co-ordinating doctor is proficient in the Welsh language if services or functions under this legislation are to be provided to an individual in Welsh in Wales. The amendment does not make it clear who would be obliged to ensure that those steps were taken, or who would assess and enforce whether the “fluent proficiency” standard was met.

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[Danny Kruger]

I absolutely agree with the right hon. Lady. There is a whole set of challenges, including in England, in respect of the impact assessment and the Bill’s commencement. Nevertheless, my suggestion is that we strengthen her proposal to empower Welsh Ministers to proceed. We should respect the devolution settlement and reflect what she describes as the “correct and rightful powers” of the Welsh Parliament to ultimately decide whether this law were to come into effect in Wales.

[Stephen Kinnock]

Amendments 144 to 171, tabled by the right hon. Member for Dwyfor Meirionnydd, relate to the powers and duties vested in the Secretary of State under the Bill. The purpose of the amendments is to change all references throughout the Bill from “Secretary of State” to “appropriate authority”. Amendment 169 defines “appropriate authority” as the Secretary of State in relation to England and as Welsh Ministers in relation to Wales. I note the intent of the promoter of the Bill, my hon. Friend the Member for Spen Valley, that the Bill’s provisions extend and apply to both England and Wales.

The amendments would mean that all the powers and duties vested in the Secretary of State are instead shared between the Secretary of State where they relate to England and Welsh Ministers where they relate to Wales. I would like to put on the record the Government’s continued commitment to devolution and to working with the devolved Governments. Having taken a neutral position on the Bill and the matter of assisted dying, the Government are still committed to working with the Welsh Government to resolve legal and technical issues and discuss constitutional matters that might arise thoughtfully and amicably.

With regard to the phrase “appropriate authority”, the challenge is that in each case throughout the Bill the appropriate authority would be determined by the devolution position of the clause in question—what is the underlying question that the clause seeks to address, and is that a reserved or devolved matter? I have discussed this with parliamentary counsel and others, and the concern is that a blanket provision of this nature may well be premature at this stage. Until we have finalised and determined the constitutional nature and impact of each clause, putting a blanket provision in place may run counter to that process.

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[Stephen Kinnock]

As my hon. Friend the Member for Stroud has just said, the picture is very complex because there are tariffs for services. Doctors receive a tariff for each service across the entire panoply of everything they do, particularly general practitioners who provide a very wide range of services. They are remunerated on the basis of a tariff that is negotiated in the GP contract between the Department of Health and Social Care and, primarily, the BMA. When a doctor operates in that environment, it is difficult to pick out their turnover from a particular service.

As my hon. Friend the Member for Stroud said, picking out an individual doctor and saying how much money they have made from a particular service, whether assisted dying or any other service, would put a particular focus on that doctor. We are drawing a distinction here with what the tariff could and should be, which we will need to discuss alongside the operating model in later clauses. Moving from being transparent on the tariff to saying, “That doctor over there made this much money from providing this service,” is a whole new ball game.

[Danny Kruger]

I am grateful to the Minister for raising a number of points, including the extraordinary revelation that we are about to find out how the Bill will operate in practice, with amendments yet to be developed even though we have been debating the Bill for a couple of weeks.

The difference between the tariff and a doctor’s income is fine, but if the tariff is to be clearly specified—no doubt it will be—how could it be complicated to determine how many tariffs a particular practice has received? I recognise that there is a separate question about whether it is appropriate to reveal that, but why is it difficult to identify how many individual tariffs a particular practice has received?

The Minister has described the tariff income, but my other concern is about the sponsorship, gifts, hospitality and fees of all sorts that the pharmaceutical companies are always trying to administer. Will he address the question of whether that should be transparent as well?

[Stephen Kinnock]

The challenge in the hon. Gentleman’s amendment is the term “total turnover.” A GP would have to extrapolate from the service provided to a whole range of other costs that may apply—for example, the share of the overhead they pay into their primary care network, the share of admin costs or the rent on their building. The definition of total turnover is the entire cost and entire revenue from the tariffs. As officials have made clear, this additional level of complexity would be an onerous task, although not necessarily impossible.

Total turnover is one side of this issue; the other, much more salient point is the quantum leap between having transparency on a particular tariff and pointing at a specific doctor and saying, “You over there—you did this much work on that much tariff, and that’s how much money you made for it.” There is a big difference between the two.

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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[The Minister for Care (Stephen Kinnock)]

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

As I have stated previously, my remarks on behalf of the Government on these amendments will provide a factual explanation. I shall not offer a position on how the Committee should vote, as that remains a matter of conscience. The overarching theme of the amendments relates to the requirement on how and when a medical practitioner may raise the matter of assisted dying.

Clause 4(2), as drafted, provides that nothing prevents a medical practitioner from using their professional judgment to decide when to raise the subject of assisted dying. Amendment 278 seeks to prevent a doctor from raising the subject of assisted dying if the person has a recorded advance decision in their medical records that states that in future they will not want assisted dying.

The Mental Capacity Act 2005 enables a person with capacity to make an advance decision to refuse a specified form of treatment in future, should they lack capacity. A person who has lost capacity under the Mental Capacity Act would not be eligible for assisted dying under the Bill. Where such an advance decision is in place, the effect of the amendment would be to prevent the doctor from raising the subject of assisted dying, unless the person indicates to the doctor that they wish to change their previous decision, that they wish to seek assistance under the legislation and that they have the capacity to do so.

Technically, amendment 278 appears unnecessary, because advance decisions under the Mental Capacity Act are not relevant to assisted dying. That is because advance decisions are about refusing treatment at a time when a person no longer has capacity, and assisted death would be available only to those who have capacity.

As drafted, clause 4(1) states:

“No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this Act with a person”.

but clause 4(2) specifies that they may do so if, in exercising their professional judgment, they consider it appropriate. Amendment 8 would prevent a registered medical practitioner from raising with a person the subject of provision of assistance under the Bill, unless the person has indicated to that practitioner or to another registered medical practitioner that they wish to seek assistance to end their own life. The effect would be that any conversation on assisted dying will need to be patient-initiated, and not at the discretion of the medical professional within a wider conversation about end-of-life care.

The effect of amendment 124, as with amendment 8, would be to prevent a registered medical practitioner from raising with a person the subject of provision of assistance under the Bill. That would mean that the person will need to indicate to a registered medical practitioner that they wish to seek assistance to end their own life before an initial discussion can take place. The effect would be that assisted dying can be discussed only if the patient has initiated the conversation.

The Government’s assessment of amendment 319 is that, as drafted, it would not prevent the subject of an assisted death from being discussed with a person who is under 18. There is already a requirement that, to be eligible for the provision of assistance under the Bill, a person must be aged 18 or over at the time that they make their first declaration under clause 1(1)(b).

Amendment 319 would impose additional requirements on the approach that a medical practitioner must make if raising the subject of assisted dying with a person who has a learning disability or is autistic. It would require the person to be provided with accessible information and given sufficient time to consider it. It would further require that they must have a supporter and/or independent advocate present for the initial discussion. The amendment would require that a person with autism or a learning disability must have a supporter or independent advocate present for the discussion, even when they have capacity or are high-functioning. Autism is a spectrum disorder, meaning that autistic people have diverse and varying needs, so the effect of the amendment would vary among individuals.

It is already the case that all registered medical practitioners, in meeting their professional standards, are expected to communicate information clearly and effectively. That includes allowing sufficient time for the individual to consider and process the information provided. For example, the General Medical Council’s “Good medical practice” states that all GMC-registered clinicians

“must take steps to meet patients’ language and communication needs”

to support them to

“engage in meaningful dialogue and make informed decisions about their care.”

Amendment 368 would require registered medical practitioners, when deciding if and when it is appropriate to discuss assisted dying with a person with Down’s syndrome, to act in accordance with the Down Syndrome Act 2022. The Act requires the Secretary of State to issue guidance to relevant authorities on what they should be doing to meet the needs of people with Down’s syndrome. Although this work is being taken forward as a priority by the Department, no statutory guidance has yet been published under the Act.

The relevant authorities in scope of the Act are institutions such as NHS trusts. The Act does not provide for guidance to be prepared for individual doctors. The relevant authorities must have due regard to the statutory guidance, which enables them a degree of discretion in following it, but the amendment would require medical practitioners to act in accordance with the guidance. It might therefore create uncertainty as to how a doctor can comply with their obligations under the Bill.

[Danny Kruger (East Wiltshire) (Con)]

I hear what the Minister says—the guidance does not exist and there is concern that the amendment may therefore induce some confusion—but would the answer not be to put a commitment into the Bill that the Secretary of State will issue guidance on how the 2022 Act could be applied in the context of the Bill?

In the light of our conversation at the Committee’s last sitting, I put on the record my intention to press the amendment if the Minister cannot give a commitment now to introduce an amendment later that the Secretary of State will introduce statutory guidance to ensure that proper care is taken of people with Down’s syndrome in accordance with amendment 368.

[Stephen Kinnock]

The challenge is the dissonance in how the guidance under the Down Syndrome Act, which is currently very close to publication, is directed towards authorities such as trusts, but there is no coverage around individual doctors. At this stage, without seeing a clear distinction between the two or how it would work for individual doctors, the Department’s concern is that it could create confusion as to the obligations on individual medical practitioners under the 2022 Act. I am obviously open to conversations about how to clear that up, but the lacuna between the authorities and the individual doctors is the problem being flagged by the Department.

--- Later in debate ---

[Stephen Kinnock]

I thank the right hon. Gentleman for that clarification and apologise for my misunderstanding; I thought he was referring to the guidance that we are currently working on under the terms of the 2022 Act. Yes, absolutely: the Bill currently specifies a two-year commencement period, within which a whole range of operationalisation work will need to be done. All of that will need to be consulted on; we will not do it all in an ivory tower from Whitehall or Westminster.

[Danny Kruger]

It is welcome that a commitment has been made to meet my right hon. Friend the Member for East Hampshire, who tabled the amendment, but a commitment to consult is not the same thing as specific protections in the Bill for people with Down’s syndrome. What we really need is a commitment in the Bill that there will be statutory guidance. There will be opportunities for that later, so we may not need to press the amendment to a vote, but if we cannot have a commitment, we must press it.

[Stephen Kinnock]

It is absolutely the hon. Member’s prerogative to press the amendment to a vote if he so wishes. As things stand, because of the baseline, which is the GMC guidance that I have just read out, we constantly go back to the Government’s position that the current corpus of guidance, regulations, advice, training, expertise and professional judgment is, in essence, satisfactory to the Department. We believe in and rely on the professional judgment of the experts in the field. That remains our fundamental position.

The effect of amendment 320 would be that the safeguards in clause 4(4) in respect of the preliminary discussion apply only where the person seeking assistance is aged 18 or over. The amendment would not prevent a discussion with a person under 18. As the Committee will be aware, there is already a requirement that, to be eligible for the provision of assistance under the Bill, a person must be 18 or over when they make their first declaration under clause 1(1)(b).

Amendment 270 would make it a requirement for a registered medical practitioner to ensure that there are no remediable suicide risk factors before proceeding to the initial discussion about assisted dying. The amendment does not state what is to happen if the practitioner considers that there are remediable suicide risk factors. As the Committee will be aware, we rely on medical practitioners to make judgments in relation to their patients that draw on their training, experience and expertise. We would expect the judgment and skill of a medical professional to be brought to bear where there are remediable suicide risk factors.

Amendment 276 would mean that a person is unable to have a preliminary discussion or make a first declaration to be provided with assistance to end their own life until 28 days after receiving a terminal diagnosis. The amendment would add an additional pause into the process for a person who has received a terminal diagnosis in the preceding 28 days. The 28-day pause would apply regardless of the patient’s prognosis, even if they had only one month left to live, for example.

New clause 6 would ensure that an advance decision to refuse treatment under the Mental Capacity Act 2005 cannot be used to seek assisted dying. Our analysis suggests that the new clause is not necessary, because an assisted death is available only to those with capacity, whereas advance decisions provide for a person to be able to refuse treatment at a future time when they have lost capacity. If a person still has capacity, they may be eligible for an assisted death. If they do not have capacity, they will not be eligible, irrespective of whether they have made an advance decision.

That concludes my remarks on this group of amendments. As I say, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could change. However, I hope my comments and observations are helpful to Committee members in considering the Bill.

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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Mr Dowd. Although it is for Parliament to progress any Bill, the Government have a responsibility to make sure that legislation on the statute book is effective and enforceable. For that reason, the Government have worked with my hon. Friend the Member for Spen Valley; where changes have been agreed mutually between her and the Government, I will offer a technical, factual explanation of the rationale for those amendments. That applies to amendment 181 in this group.

This group of amendments is linked to how the Bill’s definition of a terminal illness applies to those with a mental disorder or disability. Amendments 399 to 401 would remove the term “medical condition” from the Bill’s definition of a terminal illness, so that only those with an inevitably progressive illness or disease would be able to request to end their life, rather than, as under the current drafting, those with a “disease or medical condition”.

The amendments could narrow the scope of those who may access assisted dying services. However, clinical advice suggests that the use of the terms has changed over time, may not be used consistently and remains debated in both medical and lay circumstances. Removing the term “medical condition” may lead to disputes or protracted debates about whether a particular condition is or is not a defined disease or illness, despite there being medical consensus around whether it will lead to death within six months.

[Danny Kruger]

I am grateful for that clarification, but it rather concerns me. Can the Minister elucidate exactly which conditions might fall into the category of medical condition that would not be captured by “illness” or “disease”? Does he accept the point that I made in my speech—that the interpretation of the law by the court will be that the phrase expands the definition of a terminal illness beyond illness or disease, as it is in the current law? What are the new conditions that will be captured by the term?

[Stephen Kinnock]

What the hon. Member will have picked up throughout this debate, on every day that we have met, is that the Government are concerned about adding or taking away terminology that delivers clarity, stability and familiarity.

I have to say that I am quite torn on the hon. Member’s amendment 399, because I absolutely see where he is coming from. It is one of those situations in which my position as a Government Minister is made somewhat more complex by my personal view that his amendment is perfectly reasonable. My instinct—speaking personally as a Member of Parliament, rather than as a Government Minister—is that the remaining terms in the Bill, if we removed “medical condition”, would continue to cover the waterfront or spectrum of conditions. It is possible that this is a case in which there has been an overabundance of caution on the part of the Government. I am delivering the Government’s position, but I want the hon. Member to know that that will not necessarily determine how I vote if this amendment does go to a vote.

[Danny Kruger]

I was going to remind the Minister that he is, in his strange Jekyll and Hyde personality, speaking as a Minister but voting as a Member of Parliament, so if he has given the Government’s view that my amendment is not acceptable, but he personally thinks that it is, I hope that he will vote for it.

[Stephen Kinnock]

It is a well-made case; I am still reflecting on it, because of the somewhat complex nature of my role on this Committee, but I am inclined to support the hon. Member’s amendment.

Amendment 11 also seeks to amend clause 2(3). Our assessment of the effect of this amendment is that a person who has a mental disorder and/or a disability may not qualify under the Bill as terminally ill, even if they have an inevitably progressive illness and can be reasonably expected to die within six months. There might be concerns from the point of view of the European convention on human rights and the Equality Act if the amendment were passed as currently drafted, because its effect would be to exclude people from the provisions of the Bill if they had a disability or a mental disorder. That may not be the intention of the hon. Members who tabled the amendment.

I turn to amendment 181. In executing our duty to ensure that the legislation, if passed, is legally robust and workable, the Government have advised my hon. Friend the Member for Spen Valley in relation to the amendment. It clarifies that a person who seeks assistance to end their own life based only on a mental disorder or a disability, or both, would not be considered terminally ill for the purposes of the Bill. Such a person would therefore not be eligible to be provided with assistance to end their own life under the Bill. Someone who has a disability or a mental disorder, or both, and who also already meets all the criteria for terminal illness set out in the Bill would not be excluded by the amendment, as drafted. The amendment therefore brings important legal clarity to the Bill.

Amendment 283 sets out that a person who has one or more comorbidities, alongside a mental disorder within the meaning of the Mental Health Act 1983, would not be considered terminally ill by virtue of those comorbidities alone. The reality of modern healthcare is that many patients, not least those towards the end of life, will be dealing with several conditions or comorbidities. The term “comorbidity” in a clinical context can sometimes be used to distinguish the main problem that someone has experienced experiencing from additional but less serious problems, but it can also be used by those specialising in one or more other aspects of a patient’s care to distinguish their area of focus from other issues.

In the context of the Bill, the essential test is whether any morbidity, comorbidity or otherwise, meets the requirements in the Bill. Although it is unlikely that a terminal morbidity would be thought of as a comorbidity, it is not inconceivable that it might be, for the reasons that I have set out. The phrasing of the amendment, notably the term “alongside”, potentially increases that possibility. The effect might be that a condition that would otherwise be considered terminal would instead be considered a comorbidity alongside a mental disorder. The amendment would prevent a person with a mental disorder who would, but for the amendment, have been considered terminally ill from accessing assisted dying services under the Bill.

As I have said, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. However, to ensure that the legislation works as intended, we have advised the sponsor in relation to amendment 181, to further clarify the Bill such that only having a disability and/or mental disorder does not make a person terminally ill and eligible for assistance in accordance with the Bill.

--- Later in debate ---

[Stephen Kinnock]

I have some brief comments to make. Amendments 12 and 13 seek to further define a terminal illness for the purpose of the Bill; I will set out some details about their effect. The amendments would add a requirement that a list of a terminal illnesses for which people are eligible to seek assistance under the Bill be specified in regulations made by the Secretary of State. The effect would be that only a person who has an illness, disease or medical condition listed in regulations, and who meets the other eligibility criteria, would be eligible to be provided with lawful assistance to voluntarily end their own life.

I draw the Committee’s attention to the chief medical officer’s oral evidence given on 28 January, which was well articulated by my hon. Friend the Member for Sunderland Central. The CMO said that multiple diseases may interact, making it

“quite difficult to specify that certain diseases are going to cause death and others are not”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]

It is also the case that many illnesses, diseases or conditions that may be terminal in one case may not be so in another. Committee members may therefore wish to consider where a focus on specific illnesses or diseases, rather than on the facts of an individual case, could aid clinicians in their decision making.

The amendments also include a discretionary power for the Secretary of State to make regulations that expire after 12 months in order to make temporary additions to the list of illnesses that meet the definition of terminal. It is not clear what types of illnesses, diseases or medical conditions are intended to be captured in such regulations. I hope that those observations on the purpose and effect of amendments 12 and 13 are helpful to the Committee in its considerations.

[Danny Kruger]

I sense that the wish of the Committee is probably not to accept the amendment, so I do not propose to press it to a Division, but we have just heard quite clearly, in response to the amendment, that the Bill is essentially permissive. Once again, we have declined to put clear parameters around the eligibility for this new law. We have heard specific conditions mentioned so many times in the course of the debates over the preceding months. It is a shame that we are not prepared to state those conditions clearly in the Bill, with the opportunity for Parliament to amend them over time.

I end by echoing a point that the hon. Member for Spen Valley made about the importance of good data. I hope that if the Bill passes, we will have the best data collection in the world. I am afraid to say that data collection is not good in other jurisdictions. Nevertheless, it is possible to see how often in Oregon, Australia, Canada, and Europe, albeit in a minority of cases, conditions that most people would not recognise as deserving of assisted dying, including anorexia, arthritis, hernias and diabetes, are listed as causes of death. Indeed, so is frailty, as I discussed earlier.

My fear is that if we pass the Bill, we too—if we do data collection properly—will have a shameful appendix to the annual report showing that people have had an assisted death for reasons that most people would regard as inappropriate. I will leave it there. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”.—(Danny Kruger.)

This amendment is consequential on Amendment 399.

Amendment proposed: 402, in clause 2, page 2, line 6, at end insert—

“(2) A person who would not otherwise meet the requirements of subsection (1), shall not be considered to meet those requirements as a result of stopping eating or drinking.”—(Naz Shah.)

This amendment means that someone who is not terminally ill within the meaning of subsection (1) cannot bring themselves within that definition by stopping eating or drinking or both.

Question put, That the amendment be made.

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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Stephen Kinnock]

I will make some brief remarks on the legal and practical effect of clause 1, as amended, to assist hon. Members in making their own assessment. Clause 1 sets out the eligibility criteria that a person must meet in order to request to be provided with lawful assistance to end their own life under the provisions of this Bill. A person must be terminally ill; this term is defined in more detail in clause 2.

Clause 1(1) sets out a further four requirements, which require that a person must also have the necessary capacity to make the decision, which is to be read in accordance with the Mental Capacity Act 2005; be aged 18 or over; be ordinarily resident in England and Wales and have been resident for at least 12 months; and be registered as a patient with a GP practice in England or Wales. This clause provides that, in particular, clauses 5 to 22 of the Bill require steps to be taken to establish that the person has a clear, settled and informed wish to end their own life and has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person in making that decision.

The clause, as amended by the insertion of new subsection (3), will ensure that the service can be accessed only by an individual ordinarily resident in England and Wales. That amendment, amendment 180, has been drafted to give effect to the policy intent of my hon. Friend the Member for Spen Valley for this legislation: that it is to apply only to those in England or Wales and is not to be accessed via medical tourism.

As I have said, the Government remain neutral on the substantive policy questions relevant to how the law in this area would be changed. The clause is a matter for the Committee and Parliament to consider, but the Government’s assessment is that the clause, as amended, is workable, effective and enforceable.

Question put and agreed to.

Clause 1, as amended, ordered to stand part of the Bill.

Clause 2

Terminal illness

[Danny Kruger]

I beg to move amendment 399, in clause 2, page 1, line 22, leave out “, disease or medical condition” and insert “or disease”.

This amendment ensures that a terminal illness under the Bill can only be an illness or a disease and not a medical condition.

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

Debate between Stephen Kinnock and Danny Kruger

Tuesday 11th February 2025 Public Bill Committees

[Stephen Kinnock]

I thank the right hon. Member for her intervention. We have had a conversation about the need to ensure that the impact assessment has a clear and specific focus on the impact in Wales. I can absolutely assure her that either there will be a separate impact assessment for Wales, or we will ensure that the impact assessment that we produce is absolutely clear in terms of the impact that it will have in Wales; it will be one of those two.

Personally, I am agnostic as to which of those it is. It is simply a question of what works best given the highly integrated nature of the conversation because the criminal justice aspects of it are a reserved competence, while health and care are a devolved competence. What is the best way to present that—having a single document or two separate documents? I am not entirely clear, but I have undertaken to check the matter with officials. I will get back to the right hon. Lady as soon as possible on that point.

[Danny Kruger]

I am very puzzled, on two grounds. The first is about the impact assessment. I simply do not understand the argument that the Government have to wait until the end of the Committee stage before they can have a view on the Bill and present it for Report. The fact is that the Bill could change again on Report, and the impact assessment would have to be updated further. Why on earth do we not have an impact assessment, which could advise the members of the Committee and the Government themselves on the appropriateness of the measures?

That brings me to my second point of confusion: I simply do not understand what on earth the Minister means when he says that he is neutral about the clauses. He has just given the view, from his position, that he objects to the amendment and that he supports the use of the Mental Capacity Act. He is basing his view— I had understood that, as a neutral member of the Committee, he was not going to express one—on something. What is he basing it on? Secondly, how can he express a view when he is supposed to be neutral?

--- Later in debate ---

[Stephen Kinnock]

I apologise; I think I misunderstood the intervention of my hon. Friend the Member for Bradford West, so my comments were not clear. I meant the treatment of this matter under the law. As I said, the justification test requires that the treatment in question is a proportionate means of achieving a legitimate aim. That means the way in which the matter is treated under the law. That is what I meant; I think we got our wires crossed.

Finally, let me address amendments 356, 357 and 358, whose purpose is to exclude those who are homeless within the meaning of section 175 of the Housing Act 1996 from the definition of a “terminally ill person”. The effect of amendment 356 would be to amend the definition of a “terminally ill person”, as set out in clause 1 of the Bill, to expressly exclude a person who, notwithstanding that they met all the other requirements set out in paragraphs (a) to (d) of subsection (1), was homeless within the meaning of section 175 of the Housing Act 1996.

Amendments 357 and 358 seek to make consequential amendments to clause 7 on the first doctor’s assessment and clause 12 on court approval. These amendments would require the co-ordinating doctor and the court to be satisfied that, in their opinion, the person was not homeless within the meaning of section 175 of the Housing Act 1996 before making their statement or declaration to allow the person to proceed to the next stage of the assisted dying process.

Article 14 states that the rights set out in the ECHR should be secured for everyone without discrimination on any ground. This amendment engages article 8 on the right to respect for private and family life. Making those who are homeless ineligible for assisted dying would lead to a difference in treatment that will need to be objectively and reasonably justified. The justification test requires that the treatment in question is a proportionate means of achieving a legitimate aim.

I hope these observations may be helpful to Members in considering these amendments and making a determination about who should be eligible for accessing assisted dying services, should the Bill pass.

[Danny Kruger]

What an interesting debate—I am grateful to all hon. Members who participated.

I am interested in what the Minister was saying about the ECHR. Notwithstanding my general point about the sovereignty of Parliament, when Lord Sumption gave evidence to the Committee two weeks ago, he stressed the wide margin of appreciation given to member states on the ECHR. Does the Minister think that that will apply in this case to ensure that the British Parliament could vote to exclude these categories of people? If his view is that the Bill could be subject to challenges on discrimination grounds, however, particularly under article 14, I think we will have a lot of problems in applying the Bill. I wonder whether, in due course, we will be able to tease out how the ECHR will intersect with the Bill.

As the Minister says, the crucial point is that any discrimination must be justified on the basis of achieving a legitimate and proportionate aim. My suggestion is that there is an absolutely legitimate aim, and that this is a proportionate means of achieving it.

The debate got quite philosophical, which I found very interesting. I observe that my constituency neighbour, esteemed colleague and great Conservative, my right hon. Friend the Member for North West Hampshire, has a vision of our particular political creed that is entirely individualistic. He stresses the absolute importance of individual autonomy, treating everybody as an individual without reference to the context in which they live. I suggest to him, and to the Committee, that our freedom and autonomy depend on our relationships. Our autonomy proceeds from our socialisation. We do not emerge fully formed into the world with all our values and attributes; we acquire them by virtue of the people around us.

The crucial thing about the prison experience is that it disrupts the relationships that can make an individual genuinely free. Homelessness does likewise, and it sets up all sorts of new relationships and new socialisations that can often be very negative.

--- Later in debate ---

[Stephen Kinnock]

The amendments in the name of my hon. Friend the Member for Broxtowe relate to an individual who seeks to access assisted dying services demonstrating their wish to end their own life and demonstrating their understanding of the process by which that happens. To support the Committee’s deliberations, I will briefly summarise the Government’s analysis of the effect of the amendments.

Amendments 109, 110 and 111 would modify the requirement that the co-ordinating doctor and the independent doctor must undertake an assessment to ascertain whether, in their opinion, the person has a clear, settled and informed wish to end their own life. That would be amended to require the person to have a clear, settled and demonstrably informed wish. The term “demonstrably” would not provide further practical guidance beyond the words already in the Bill and could create uncertainty as to what constitutes being demonstrably informed.

I turn to amendment 112. Clause 9 currently provides that the co-ordinating and independent doctors must explain and discuss a number of matters with the person being assessed. These matters are set out in clause 9(2)(b), (c) and (d). In the interests of time, I will not go through each of those matters, but they include an explanation and discussion of the person’s diagnosis and prognosis, any treatment available and the likely effect of it, and the further steps that must be taken before assistance can lawfully be provided to the person under the Act.

The amendment would create an additional requirement for the co-ordinating and independent doctors. It would require them both to be satisfied that, in their opinion, the person seeking assistance has demonstrated their understanding of the matters that have been discussed under clause 9(2)(b), (c) and (d). The amendment does not specify in any further detail what the doctors would be required to look for to satisfy themselves that a person has demonstrated their understanding. That would be left to their professional judgment, with training, support and guidance, as with other concepts in the Bill. The amendment would leave it to the co-ordinating and independent doctor’s professional judgment to determine what “demonstrated their understanding” looked like in respect of each individual person.

I hope that those observations are helpful to the Committee.

[Danny Kruger]

I have just a few points to make. I very much applaud the hon. Member for Broxtowe for her amendment, which would genuinely—demonstrably, I might say—strengthen the Bill. It does not seem in any sense hostile to the principle or purpose of the Bill; it supports it.

To make a gentle criticism, I think that there is a concern about the lack, throughout the Bill, of a proper trail of documentary evidence following the applicant through the process. For example, the two conversations with the doctor would take place behind closed doors, and no record of their discussion would be made. I do not think that conducive to trust. There is no way to assess whether the safeguards are actually in operation.

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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Stephen Kinnock]

Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?

Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state-wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.

[Danny Kruger (East Wiltshire) (Con)]

Q I am very grateful for your evidence; it is really useful. I want to state, for the record and for information, that we have before us today three professionals from Australia, all of whom support the laws in that country, and that we heard yesterday from two American doctors, who were also supportive of assisted suicide laws, even though in both countries there are many doctors who oppose what is happening. I regret that we are not hearing evidence from them, but it is very helpful to have your input.

Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?

Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non-terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.

What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.

But suffering is subjective and it is context-dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?

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

Debate between Stephen Kinnock and Danny Kruger

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Stephen Kinnock]

Dr Spielvogel, I do not know whether you have anything new to add to that. If not, that is fine.

Dr Spielvogel: Without repeating anything that Dr Kaan said, I was just going to say that in addition to my assisted dying hat, I am also the programme director for the family medicine residency programme, so my main job is actually training young physicians who are becoming what you would call GPs.

We have instituted curricula as part of our residency programme here to train interested physicians in learning how to do assisted dying. We go through a whole process for that, including lectures, them shadowing me and me shadowing them, listening in on their conversations, giving them pointers and walking them through the steps of the process. They then do this with multiple patients through the course of their residency, so when they graduate, they feel confident in being able to offer this care. As with most medical training, this should be included in that part of the training process. All the other things, such as pathways in continuing medical education, are very important for physicians out there in practice who want to start doing this, but really getting this into medical training at its roots is vital for normalising the practice.

Speaking of which, something else I have heard a lot is that this might be distressing to physicians, or that physicians would not want to offer this care. I would like to say that 80% of our residents on our programme opt to receive this training. When we did a study on this of graduates from our programme who were continuing to offer assisted dying, 70% of the surveyed residents said that their assisted dying work was more rewarding to them than the rest of their primary care work—70% said that it was more rewarding.

I want to come back to the notion that physicians would feel burdened or that this would be some sort of psychological negative to physicians practising it, because it is actually quite rewarding work. It has led me to be a better physician to all my patients because it has helped me with having these difficult end-of-life conversations with them. That was a bit of a twofer, sorry—I added that on there.

[Danny Kruger]

Q I have four very quick questions. I would be grateful if you could try to answer them quickly, because we have to let everybody else in before the end of the session. Dr Spielvogel, I was struck by you saying that nine out of 10 patients to whom you have suggested this option were not aware of it. How many people who did not know about it before and to whom you might have suggested assisted dying as an option do you think have taken it up? How many people do you think benefited from you telling them about the option?

Dr Spielvogel: A lot. I have actually been quite surprised. Everybody is different. This is the whole point: different people have different goals, objectives and values. I have mentioned it to people who say, “No, I would never do that,” and I never bring it up to them again.

Hospice and Palliative Care

Debate between Stephen Kinnock and Danny Kruger

Monday 13th January 2025 Commons Chamber

[The Minister for Care (Stephen Kinnock)]

I pay tribute to the hon. Member for Wimbledon (Mr Kohler) for securing the debate and making such a powerful and thoughtful opening speech. I thank hon. Members from across the House—there are too many to list. It would be impossible to capture the richness of the contributions made. Something like 28 Back-Bench Members made speeches—I am sure Madam Deputy Speaker will correct me if my numbers are not quite right. It was an excellent debate, and I thank everybody for their contribution. I thank all those who work or volunteer in the hospice and palliative care sector for the deeply compassionate care and support that they provide to patients, families and loved ones when they need it most.

This Government are committed to building a society in which every person receives high-quality, compassionate care, from diagnosis through to the end of life. We will shift more care out of hospitals and into the community, to ensure that patients and their families receive personalised care in the most appropriate setting. Palliative and end of life care services, including hospices, will have a vital role to play in that shift. The reality is that we have a mountain to climb. Our health and care services are on their knees, but this Government will strain every sinew to build them, and to create a health and care system that is once again fit for the future.

In England, integrated care boards are responsible for the commissioning of palliative and end of life care services to meet the needs of their local population. To support ICBs in that duty, NHS England has published statutory guidance and service specifications. While the majority of palliative and end of life care is provided by NHS staff and services, we recognise the vital part that voluntary sector organisations, including hospices, play in providing support to people at end of life, as well as to their loved ones.

Most hospices are charitable, independent organisations that receive some statutory funding for providing NHS services. The amount of funding each charitable hospice receives varies both within and between ICB areas. The variation is dependent on demand in the area, and on the totality and type of palliative and end of life care provision from NHS and non-NHS services, including charitable hospices, within each ICB footprint.

We understand the financial pressures that hospices have been facing, which is why last month I was truly proud that this Government announced the biggest investment in hospices in England in a generation. It will ensure that hospices in England can continue to deliver the highest-quality care possible for patients and their families and loved ones.

[Danny Kruger]

I also welcome that, and congratulate the Minister on getting that money out of the Treasury, but will he acknowledge that there is a difference between capital and revenue? Hospices urgently need support for their day-to-day running costs, not just more money to support the capital. They also need capital support, but that is less crucial.

[Stephen Kinnock]

I take the hon. Gentleman’s point, but hospices face a range of pressures. The capital expenditure injection that we have provided will help them in the round. Clearly, anything that helps a hospice with its budget in the round, be it capital or revenue, will help the hospice.

We are supporting the hospice sector through a £100 million capital funding boost for adult and children’s hospices, to ensure that they have the best physical environment for care. There is also £26 million in revenue funding to support children and young people’s hospices. The £100 million in capital funding will deliver much-needed improvements—from refurbishments to overhauling IT systems and better facilities for patients and visitors—during the remainder of 2024-25 and throughout 2025-26. The investment will help hospices to improve their buildings, equipment and accommodation, so that patients continue to receive the best care possible.

Hospices for children and young people will receive a further £26 million in revenue funding for ’25-26 through what was known until recently as the children’s hospice grant. That investment demonstrates the Government’s recognition of the importance of integrating services to improve the treatment that patients receive. Furthermore, through our plans for neighbourhood health centres, we will drive the shift of care from hospitals to the community, which will bring together palliative care services, including hospices and community care services, so that people have the best access to treatment through joined-up services.