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

Daniel Francis Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

There is a danger, though. As we have heard from Australian and American practitioners, the reviews undertaken in other jurisdictions are actually used to unpick safeguards, which become reframed as barriers to access. That is indeed implicit in a Bill that creates a new human right. The safeguards that are created discriminate against certain groups of people: most obviously, those who have a diagnosis of more than six months, those who have to go through the hoops—the number of assessments—set by the Bill, or those to whom the doctor was not able to make the suggestion directly, although we do cover that in the Bill. So the safeguards in the Bill, weak as they are in my view, nevertheless might be challenged in the course of the review. If that is what happens, that is what happens, but that is all the more reason why it is important that we insist on regular and short-term reviews, and why Parliament should have a meaningful debate with Ministers answering for the operation of the legislation.

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

It is a pleasure to serve under your chairship, Sir Roger. This has been a long process, and we are nearly at the end of it now. Members will recall that at the start of the process, I was very insistent that Mencap should give oral evidence. When it did so, Dan Scorer said:

“Clause 35 is about the review of the Act. The lived experience of people is absolutely vital to that. The Bill says that it will be five years until we have that review. Our view is that that is far too long. If the Bill becomes law and if there are really serious issues and discrimination taking place against people, we will want to know that a lot earlier than in five years’ time, and we will want action to be taken. Our suggestion is that review should be earlier. We would want to see strong representation from patient groups across that, as well as from people who have been involved in the process, such as family members, advocates and clinicians to make sure that if serious issues are being raised, they can be picked up early and addressed.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280, Q367.]

[Jake Richards (Rother Valley) (Lab)]

My hon. Friend is, as ever, making really important points. Is he reassured by the fact that the commissioner will be reporting annually, as per the previous clause, and that the panel will give reasons, which will likely be public?

[Daniel Francis]

The annual reporting does give us some reassurance, but when we accepted some of Mencap’s recommendations last week, I said that I would welcome it if the entirety of its recommendations were accepted—and it wanted an overall review at an early stage in the process.

Amendment 493 to 495, in my name, address those concerns. A consistent concern of mine is how we address issues that come to light from specific communities, particularly those with learning difficulties, and amend the legislation at a reasonable stage in the process.

[Lewis Atkinson (Sunderland Central) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Roger. I will be brief.

I am in favour of retaining the Bill as it stands. The key thing is the interplay between this clause and clause 42, on commencement. I would have been minded to support changes to the reporting period had the Bill been commencing within two years, as clause 42 as drafted sets out, but my hon. Friend the Member for Spen Valley has tabled an amendment that will change the backstop of the commencement period to four years. The timescales set out in this clause are from the day on which the Bill is passed. It makes no sense to carry out a formal review of the operation of the legislation before the services have come into being. We will have a four-year timetable, potentially, for the backstop of the commencement. Throughout that time, the annual reporting requirement of the commissioner, who will undoubtedly have been appointed in advance, will kick in.

I also draw the Committee’s attention to new clause 35, tabled by my hon. Friend the Member for Penistone and Stocksbridge, which speaks to some of the concerns raised by my hon. Friend the Member for Bexleyheath and Crayford. I strongly support the new clause, and the establishment of a disability advisory board to report annually on the effect on disabled people of not just the Act but the implementation. Picking up any concerns or views about its effect on people with disabilities would happen in a timely manner under new clause 35.

--- Later in debate ---

Division 74

Question accordingly negatived.

Ayes: 9

---

Labour: 6
Conservative: 2
Liberal Democrat: 1

Noes: 14

---

Labour: 9
Liberal Democrat: 2
Conservative: 2
Plaid Cymru: 1

[Daniel Francis]

I beg to move amendment 491, in clause 35, page 22, line 2, after “health” insert “and care”.

This amendment, together with Amendment 492, would broaden the scope of the assessment criteria for the Review of this Act, by referring to “health and care services to persons with palliative and end of life care needs” to provide a more holistic consideration of palliative and end of life care needs, reflecting current clinical best practice.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 492, in clause 35, page 22, line 2, after “palliative” insert “and end of life”.

See Amendment 491.

Amendment 397, in clause 35, page 22, line 5, at end insert—

“(ba) an assessment of the impact of this Act on persons with learning disabilities, including any concerns about the operation of this Act in relation to such persons;”.

[Daniel Francis]

I will be brief. Amendments 491, 492 and new clause 28, which will be discussed when we come to the next group, have all been suggested by Marie Curie, the UK’s leading end-of-life charity. Amendments 491 and 492 are minor amendments that would broaden the scope of the required assessment of the availability, quality and distribution of palliative care services to be undertaken as part of the five-year review of the Act, by referring to

“health and care services to persons with palliative and end of life care needs”.

That provides a more holistic consideration of end-of-life care than the current drafting of

“health services to persons with palliative care needs”

and would reflect the current clinical best practice of palliative care multidisciplinary teams, incorporating both health and social care professionals. It is in line with current clinical best practice and with the written evidence that Marie Curie has supplied to us. In addition, amendment 397 is in line with many other amendments I have tabled during this process and seeks

“an assessment of the impact of this Act on persons with learning disabilities, including any concerns about the operation of this Act in relation to such persons”.

--- Later in debate ---

[Kim Leadbeater]

I will speak to my new clause 40 and my amendment 546. The purpose of new clause 40 is to establish a requirement for regular reports on the implementation of the Act until all its provisions are fully implemented. This will ensure continuous oversight and transparency regarding the progress of the Act’s implementation.

The new clause will mandate the Secretary of State to prepare, publish and lay before Parliament a report on the implementation and progress of the Act as soon as reasonably practicable after each reporting period. The reports must include the progress made on implementing the Act during the reporting period, and the Secretary of State’s plans for implementing the Act in future periods, including an expected timetable for further implementation. The first report must be issued one year after the Act is passed, and subsequent reports are due every six months. The sixth and final report marks the conclusion of the reporting period.

The new clause is linked to amendment 546, which will ensure that new clause 40 will be brought into force immediately upon the passing of the Bill, making the reporting requirements active right from the start. This provision is crucial for maintaining accountability and for ensuring that Parliament is regularly updated on the progress of the Act’s implementation and that any necessary adjustments or future plans are communicated effectively. It provides a structured timeline to track the implementation of the Act until all provisions are fully operational.

[Daniel Francis]

I wish to speak to my new clause 28, which was suggested by Marie Curie, the UK’s leading end-of-life charity. The new clause is more substantive than my two amendments in the previous group. It would require an additional assessment within 12 months of the Bill being passed, with the Secretary of State required to undertake an assessment of

“the extent to which the Act is on course to meet its aim of allowing adults who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own lives”.

Crucially, the assessment would incorporate an assessment of the current state of health and care services to persons with palliative and end-of-life care needs, and the implications of the Act for those services, including for the quality and distribution of palliative and end-of-life care services. The new clause seeks to mirror the requirement in clause 35 for an assessment after five years of the Bill passing, only within 12 months of the Bill receiving Royal Assent, in order to provide a benchmark against which the later assessment can be measured.

There has been much discussion about the relationship between the Bill and palliative and end-of-life care services. Above all, the intention behind this new clause is to ensure that, outside the proceedings of the Committee and the progress of the Bill, that relationship is properly and thoughtfully considered by Government. We have heard a range of expert evidence throughout the Committee that, despite the very high quality of palliative and end-of-life care in this country and the phenomenal efforts of the clinicians and organisations delivering it, access to that vital care is all too often inequitable and subject to a postcode lottery.

As Marie Curie stated in its written evidence, if the fundamental aim of the Bill is to offer terminally ill people choice at the end of life,

“genuine choice…cannot exist unless dying people are able to choose to receive high quality palliative and end of life care”.

The sad reality is that in too many cases today people are not able to make that choice. There will most likely be consensus among us that action is needed to fix end-of-life care to ensure that all dying people can have choice and dignity, even if we disagree on whether that is most appropriately achieved on the face of the Bill or through other mechanisms.

There has also been a great deal of debate and discussion about what the impact of introducing assisted dying might be on palliative care services and reference to what might have happened in other jurisdictions. We should not leave this to chance and fool ourselves that improved access to palliative and end-of-life care would be an inevitability as a result of the debate or level of public interest in the Bill. By requiring an immediate assessment of the state of health and care services available to persons with palliative and end-of-life care needs through new clause 28, we can create a framework for accountability within this legislation and a firmer basis on which future policy and spending decisions on palliative care can be made.

It may be useful to recall that we have not had a national strategy for palliative and end-of-life care since 2008. While I appreciate that there are major policy milestones approaching, such as the 10-year health plan, that could help to address that gap, my hope is that an assessment of the quality and availability of palliative and end-of-life care services undertaken as part of the Bill can sit helpfully alongside other plans and strategies.

When introducing the Bill on Second Reading, my hon. Friend the Member for Spen Valley chose to highlight that she had

“included in the Bill a requirement for the Secretary of State to report to the House on the availability, quality and distribution of palliative care.”—[Official Report, 29 November 2024; Vol. 757, c. 1013.]

At this point, the Bill requires such an assessment only after five years. I hope that she and other hon. Members will agree that it would be beneficial to support this new clause so that such an assessment may be undertaken within 12 months, in support of the ambition of seeing improvements in palliative and end-of-life care.

[The Chair]

For the avoidance of confusion, these new clauses will not be voted upon now. You will have the opportunity to move them formally later, when we reach them at the appropriate time in the course of consideration.

[Dr Simon Opher (Stroud) (Lab)]

I find the delay of four years that new clause 40 would introduce excessive in terms of the time taken and needed to deliver the requirements to implement the Bill in legal terms. I urge the Committee to reduce that at least to three years. That would mean four six-month checks, rather than six. The reason is that we have created a thorough Bill that is ready to implement. I understand that there are some pressures on the Department of Health and Social Care, so I accept a year’s delay. My worry is that a four-year delay might well take us past the next election and that the Bill will become an issue in the election.

[Daniel Francis]

That new clause was tabled within the last week. Has my hon. Friend sought advice from the Clerks? The only way that we could amend this now is through a manuscript amendment, and I presume that now, at the eleventh hour, that would not be allowable. I just want to clarify the position.

[Dr Opher]

I am afraid I do not understand how we could change this. I just wanted to put on record that I feel that a four-year delay is excessive. I have nothing further to add to that, but I would be interested in the legal opinion on whether we can change it.

--- Later in debate ---

[Stephen Kinnock]

Yes. I am very happy to take that up with officials and I will come back to the right hon. Gentleman in short order.

New clause 20 would introduce a requirement on the Secretary of State to lay an annual report in both Houses of Parliament on the impact of the Bill. The report would include the effect of an assisted dying service on access to healthcare, palliative care and assisted dying, and an analysis in relation to people’s socioeconomic status and protected characteristics. That report would sit alongside the existing requirement in clause 35 for a report five years after the Bill is passed. The new clause would require that the first annual report be laid before each House on its first sitting day after one calendar year from the passing of the Bill. The Committee may wish to note that, given the 12-month timeframe, the reporting requirement may start before implementation is complete.

Protected characteristics are defined in section 4 of the Equality Act 2010; however, socioeconomic status is undefined in the new clause, and is not defined elsewhere in the Bill. It is therefore not clear what the assessment of those factors is intended to involve, and it may be difficult in practice for the Secretary of State to determine whether they have fulfilled this duty.

New clause 28 would introduce a legal requirement on the Secretary of State to undertake an assessment of the Bill within 12 months of it being passed, and to publish and lay a report of that assessment in both Houses of Parliament. The Committee may wish to note that, given the 12-month timeframe, the reporting requirement may start before implementation is complete.

Under the new clause, the assessment must cover the extent to which the Bill is on course to meet its aims; the state of health and care services for persons receiving palliative and end-of-life care; the implications of the Bill on those services; any emerging concerns relating to the operation of the Bill; and any steps the Secretary of State proposes to take in response to those concerns. That requirement is in addition to clause 35, which requires a review by the Secretary of State at the end of the initial five-year period after the Bill is passed. That new requirement is wider in scope, and would be required after one year.

Palliative and end-of-life care services are broad, holistic services, provided by a range of professionals and providers—generalist and specialist—across the NHS, social care and voluntary sector organisations. Therefore, measuring the provision is difficult, as relevant consultations and tasks are not always coded as palliative or end-of-life care. Commissioning and contracting processes do not consistently support data collection, with block contracts and grants commonplace. It is also practically difficult to identify the Bill as the catalyst of the implications on those services over the specific period, as they are affected by multiple factors.

Question put and agreed to.

Clause 35, as amended, accordingly ordered to stand part of the Bill.

Clause 36

Disqualification from being witness or proxy

[Daniel Francis]

I beg to move amendment 454, in clause 36, page 22, line 26, at end insert—

“(e) any person who would not have capacity to request assistance to end their own life under this Act.”

[The Chair]

With this it will be convenient to discuss clause stand part.

[Daniel Francis]

Amendment 454 stands in my name, in relation to the clause on disqualification from being witness or proxy. Clause 36(2) outlines the reasons why an individual cannot be a witness or proxy: if they are a relative of the person; if it is believed they are a beneficiary of the will; if they may otherwise benefit financially; if they are a health professional who has provided treatment or care for the person; or if they have not yet attained the age of 18.

Clearly—particularly on clause 3—we have had long debates about mental capacity, and it does not state in clause 36 as is currently stands that the person who is over 18 has to have mental capacity. Therefore, as the Bill stands, someone could bring their grandmother with Alzheimer’s or dementia along and get her to sign their paperwork. My amendment simply seeks to ensure that the person who is the proxy has mental capacity. I commend the amendment to the Committee.

[Stephen Kinnock]

As drafted, clause 36 sets out individuals who are disqualified from acting as a witness or proxy. Amendment 454 would add to that list and exclude anyone from acting as a witness or proxy who would not themselves have capacity to request to end to their own life under the Bill. This would require there to be an assessment of the capacity of potential witnesses and proxies. There is no corresponding obligation placed on medical practitioners in the Bill to assess the capacity of potential witnesses and proxies, so it is not clear how a person would request, and be provided with, the required capacity assessment.

[Kim Leadbeater]

It is right that there are some exclusions for witnesses and proxies, as set out in the Bill, but although I have no doubt that amendment 454 comes from a good place, it seems both excessive and impractical to conduct a capacity assessment on witnesses and proxies. They are not the patient who is seeking assistance under the Bill, and the role they have is functional and will be overseen by the co-ordinating doctor. The panel can also ask to hear from them if they wish. As such, I cannot support the amendment.

[Daniel Francis]

I wish to press the amendment to a vote.

Question put, That the amendment be made.