Terminally Ill Adults (End of Life) Bill (Twenty-fourth sitting) Debate
Full Debate: Read Full DebateStephen Kinnock
Main Page: Stephen Kinnock (Labour - Aberafan Maesteg)Department Debates - View all Stephen Kinnock's debates with the Department of Health and Social Care
(2 days, 22 hours ago)
Public Bill CommitteesI 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.
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.
I want to emphasise that at the moment the patient reaches that point, they will have had their palliative care options explained to them extensively, under the Bill, and it is highly unlikely at that point, as my hon. Friend the Member for East Wiltshire said, that anyone would not be in receipt of palliative care, given the very late stage of their disease.
I happened to be at a hospice in Stafford yesterday on a ministerial visit and was extremely impressed by the work that the hospice staff were doing on family counselling, and advice and engagement both with the patient and family and loved ones, so the right hon. Gentleman is right that the hospice sector, among others, plays a vital role in that holistic engagement with patients throughout the process.
Amendment 374 requires that the co-ordinating doctor must notify the voluntary assisted dying commissioner where they witness a second declaration and where they make or refuse to make the supporting statement under clause 13(5), and that the commissioner must be provided with a copy of the second declaration and any statement. I hope that those observations were helpful to the Committee.
It is a pleasure to serve under you this morning, Ms McVey. My amendments 374 and 471 serve to clarify that the second declaration must be made before it is witnessed—it is a drafting amendment—and to bring clause 13 in line with the reporting requirements elsewhere in the Bill. For the functions of the commissioner to be carried out effectively, including supervising the assisted dying panels and making annual reports on the legislation’s operation, it is essential that all relevant details and reports are made available.
I am unable to support amendment 457, in the name of the hon. Member for Richmond Park. As I said when we started discussing the amendment, I do not fully understand why it has been positioned at this stage in the process. The shorter period of reflection is a recognition that a person’s death is expected within a month, so they literally have a few weeks left of life.
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?
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.
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
I confirm that amendment 411 has been withdrawn. I see no other Members bobbing; I call the Minister.
Amendment 321 would require a proxy to record, when signing the declaration on behalf of the person, the reason why the person they are acting as a proxy for is unable to sign their own name. The recording of the reason may make the use of a proxy more transparent. It may also assist others involved in the scrutiny of the process to understand why a proxy was used.
Amendment 431 seeks to restrict who can be a proxy under the Bill to attorneys with a lasting power of attorney, or LPA, for health and welfare decisions—that is, those people who are able to consent to or refuse life-sustaining treatment. The amendment raises significant practical issues. First, not everyone has an LPA. Secondly, where a person has made an LPA, they will have decided whether to give the attorney the authority to refuse or consent to life-sustaining treatment. That is not automatic and means that not all attorneys would be able to meet the eligibility requirement of the amendment. Thirdly, the Mental Capacity Act 2005 enables an attorney to exercise power under an LPA only if and when someone has lost capacity.
Does the Minister agree that, unfortunately, my hon. Friend the Member for East Wiltshire seems to be labouring under the misapprehension that there is some reputational test in becoming an attorney? In truth, I can appoint anybody I want to be my attorney. There is no verification or otherwise until there is some form of dispute around the exercise of the power of attorney. In fact, the regulations may mean that we have stronger verification of the bona fides of the person who is a proxy than we would have through the LPA route.
Does the Minister not also find it slightly sad that, given the type of Conservative I know my hon. Friend the Member for East Wiltshire is, he thinks the concept of being of good standing in society is somehow meaningless?
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.
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.
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.
Does the Minister agree that it will be on the record that we have had this conversation, and that many of us—including myself—have expressed our concerns about the concept of good standing in the community? I would like to think that that will be taken into consideration.
I am acutely conscious that every word we say in this Committee is on the record. My hon. Friend makes a valid point in that context.
The purpose of amendment 253 is to clarify that a person acting as a proxy can both sign and revoke a declaration on behalf of a person seeking assistance under the Bill. This amendment would extend the provisions under clause 15 to a person who is acting as proxy to the person seeking assistance under the Bill, enabling the proxy to act on behalf of the person to cancel their first or second declaration if they are unable to sign their own name by reason of physical impairment, being unable to read or for any other reason. I note that the cancellation of a declaration is governed by clause 14, and the cancellation may be given orally, via writing, or
“in a manner of communication known to be used by the person”.
It does not require the signature of the person seeking assistance under the Bill, so a proxy may not be required for some people in relation to revoking a declaration, even if they have been required under clause 15.
On the point made by the Bill’s promoter, my hon. Friend the Member for Spen Valley, should the issue of proxy end up before a court, what will be relied on—the conversation that we are having here and the intentions stated in Committee, or a future statutory instrument and what the Secretary of State puts in the guidance?
The regulations will have primacy, and will be shaped by a range of inputs, including the conversation we have just had in Committee. The process is that the Bill gets Royal Assent, then the regulations are drawn up based on a range of consultations and inputs—including the Hansard. The regulations then become the basis on which this proxy process is managed, enforced and executed.
The Bill, once it becomes an Act, places a legal duty on the Secretary of State to produce those regulations. The Secretary of State would be in breach of the law if he were not to enforce the conclusions of the Act.
Record keeping is a huge issue in our healthcare system. A huge number of coroners’ reviews have identified that record keeping has been an issue. By specifying only that clinicians need record a “recordable event”, we are leaving it as the responsibility of individual clinicians to decide what a recordable event is.
It is important that a good record be available to prevent future incidents and learn good practice. Leaving it open to a clinician to decide whether something is a recordable event could lead to most issues not getting recorded. For example, if a clinician has identified that there was coercion, it will be for the clinician to decide how much documentation to do. In my view, if they have identified a coercion, that should be recorded as an incident and further investigation should be done, but the Bill leaves it up to the clinician to decide. There is no standard for record keeping across the healthcare system, so a care home’s may be different from an NHS ward’s. I think it is for the Committee to look into what “recordable event” actually means.
The purpose of amendments 474 to 478 is to improve the drafting of the Bill by creating a new definition of “recordable event”. Recordable events are the events set out in clause 16(1) related to the recording of declarations and statements.
The amendments would also make consequential changes to clause 16, which refer to the occurrence of the recordable event, as per the new definition, and include reference to a report in addition to a statement or declaration. The reference to a report is consequential on the amendments already agreed by the Committee to clauses 7 and 8.
I have nothing further to add.
Amendment 474 agreed to.
Amendments made: 475, clause 16, page 11, line 19, leave out from second “the” to “in” in line 21 and insert
“occurrence of the recordable event”.
This amendment is consequential on amendments 209 and 377.
Amendment 476, in clause 16, page 11, line 24, leave out from “the” to “, and” in line 26 and insert
“occurrence of the recordable event”.
This amendment is consequential on amendments 209 and 377.
Amendment 477, in clause 16, page 11, line 27, leave out from “the” to “in” in line 29 and insert
“occurrence of the recordable event”.
This amendment is consequential on amendments 209 and 377.
Amendment 478, in clause 16, page 11, line 30, leave out from second “a” to end of line 32 and insert
“declaration, report or statement within subsection (1) must include the original declaration, report or statement.”—(Kim Leadbeater.)
This amendment is consequential on amendments 209 and 377.
Clause 16, as amended, ordered to stand part of the Bill.
Clause 17
Recording of cancellations
The amendment, which would clarify the drafting, speaks for itself. The important point is that the record of cancellation be with the GP practice as soon as is practicable. It is not necessary for that to take place physically at the practice, as that could potentially delay its delivery.
Clause 17(2) provides that where a notice or indication regarding a cancellation of a first or second declaration is given to a registered medical practitioner “at” the person’s GP practice, that practitioner must record the cancellation in the person’s medical records as soon as possible. Amendment 479 seeks to clarify that the requirement to record the cancellation applies not just where the cancellation is given to a registered medical practitioner physically at the GP practice, but where the cancellation is given to a registered medical practitioner “with” the person’s GP practice, irrespective of whether the notice was given at the GP practice. I hope that that explanation is helpful.
I commend the amendment to the Committee.
Amendment 479 agreed to.
Clause 17, as amended, ordered to stand part of the Bill.
Clause 18
Provision of assistance
Amendment made: 378, in clause 18, page 12, line 9, leave out paragraph (a) and insert—
“(a) a certificate of eligibility has been granted in respect of a person,”.—(Kim Leadbeater.)
This amendment is consequential on NC21.