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

Kim Leadbeater Excerpts

Wednesday 29th January 2025 Public Bill Committees

[Jack Abbott (Ipswich) (Lab/Co-op)]

Q Dr Fellingham, given your experience of both the British and the Australian healthcare systems, do you believe there are any fundamental differences that would affect how assisted dying is implemented in this country? If there are, how might we be able to mitigate them?

Dr Fellingham: In the UK you are missing a number of the challenges that we have, such as the geographical challenges in a state as vast as Western Australia. You also have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry-pick the best bits of what is working well in those jurisdictions, and so create the very best, most robust and most patient-centred legislation you can.

The healthcare systems are broadly similar. We are both first-world, developed western countries. We are still operating in a context of resource limitation, but not resource limitation that is so prohibitive that it would make it particularly difficult to enact a law in the UK. The United Kingdom would be broadly able to follow any of the laws that exist in Australia and implement them very successfully.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you for joining us this morning. I am interested in following up on what Dr Mewett said about the relationship with palliative care, which has an important role to play in end of life treatment. What is the relationship between assisted dying and the palliative care world like? Also, I would like to hear a bit more about the multidisciplinary board, which I think you set up, Dr McLaren. What does the multidisciplinary approach look like in your jurisdictions?

Dr Mewett: There is no doubt that traditionally palliative care has eschewed any idea of voluntary assisted dying, for a number of historical reasons that I have spoken about in other fora and will not go into now. But it is changing, and there is a general change in attitude, especially among the younger palliative care training doctors and young clinicians, who see this as part of patient-centred care, honouring the patient’s autonomy and choice, while still addressing deeply their concerns and suffering in pain management and so on.

That will see a change. I do understand where it has come from. When one looks at it almost forensically, it does not stack up and will continue not to stack up to have someone saying, “Well, VAD is not part of palliative care.” VAD is part of patient choice and it will be part of palliative care ongoing. That will evolve over time.

I am sorry but I did not quite catch the meaning of the question about the multidisciplinary aspect, Ms Leadbeater.

[Kim Leadbeater]

Q Was it a multidisciplinary board that Dr McLaren set up to look at the safety and quality of voluntary assisted dying?

Dr McLaren: This was born out of when we started as a Victorian group. We were very individual and we interpreted the law in our own ways. We complied with it as best we could, but we did not have a centralised discussion board or peer group set up at the time. We have propagated advice through the other states to ensure that there are what we call community practices, where clinicians can discuss their cases and learn from each other.

Several months after, from I think June to November, we had no interconnection with other VAD-practising doctors. In November, we had a forum set up where we are able to connect and talk about difficult cases and how we would each interpret them. As the subsequent states came online, we were approached by some of the practitioners from other states saying, “We don’t really want to reinvent that wheel, so can we join your community of practice?” Because it was set up by our state government, they were unable to join, so I saw a gap in terms of creating an organisation where we could propagate that knowledge and not all start from scratch.

It initially started as a group of voluntary assisted dying medical practitioners, and we would discuss cases across the board and ask things like, “What would you do under your legislation?” and we all learned from that. Then we were approached by pharmacists, nurses and others involved in voluntary assisted dying provision, including legislators who wanted to contribute to the custodians of the voluntary assisted dying law, who are the people who actually run the projects. That then led to the creation of Voluntary Assisted Dying Australia and New Zealand, which is a multidisciplinary group of predominantly doctors, but we do have nurses, pharmacists and legislators involved. We have had two annual conferences where we discuss issues faced by many of our practitioners. That has been a great resource for people.

We are developing standards. We feel that in our legislation there was perhaps too much about instilling what the standards are. We feel as though the appropriate-ness of such things as telehealth should be regulated via standards rather than via legislation, which it currently is in Australia. These are the types of topics we have weighed in on and created position statements for in order to protect the laws that we believe in, uphold and like to think of ourselves as responsible practitioners of.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q Dr Fellingham, to circle back to the issue of training, could you go into more detail about what the initial training consists of—the nature of it and the number of hours—and how that compares with the refresher training? What is the system for mentorship, supervision, appraisal and continuing professional development requirements?

Dr Fellingham: It is important to reflect that only people who are at quite a significant point through their own specialty careers are eligible to become assisted dying practitioners in this country. For instance, I was a consultant anaesthetist and I had already been practising for more than a year. I had lived experience of caring for patients both living and dying, both anticipated and unexpectedly, over a career spanning more than 10 years, before I came to the point of assisted dying.

To become eligible to offer assisted dying, I then had to undertake training developed in a special package by the Queensland University of Technology. That training package takes about two days to complete and there is an exam at the end before someone can become eligible. The exam has a 95% pass rate.

Once someone has qualified with that training, they are offered the opportunity to give their details to the state-wide care navigator service. The vast majority of people opt to do that. Once they do that, they basically become engaged in this incredibly supportive, collaborative and nurturing multidisciplinary team within a professional organisation that, in our state, covers all the assisted dying practitioners—the doctors—but also the care navigators, the pharmacy service, the individual voluntary assisted dying programme managers and the end of life choices co-ordinators, who exist in all our hospital systems.

Because we are all consultants in our own specialties, there is not the same level of supervisory oversight as we would give to junior doctors—there are not forms that we fill in; we do not accredit one another—but we do acknowledge that we are all learning and growing in this space. These are new laws: even the oldest in Australia has only been going for five years. Every single one of us is motivated from a place of wanting to support, collaborate, grow and learn from one another, and ensure that the care we are offering to people in this challenging space is of the absolute highest quality.

We have a really robust community of practice. We meet monthly. Half those meetings are online to allow our regional practitioners to join, and half of them are face to face. They are extremely well-attended closed sessions where, especially over the time that we have developed relationships with one another, we find an incredibly supportive space to share our experiences and to learn, grow and develop from one another.

In terms of CPD, we all have to maintain our professional registration. I have both general and specialist registration with our supervisory body, which is like the General Medical Council. I complete my mandatory CPD requirements each year, as per my specialist college. On top of that, I have just redone the refresher training, which is once every three years. That is just what was mandated in our state. If someone has not done VAD practice, they have to do the whole thing again. That is only for people who have been active in this space. That training is shorter—it is about half a day—but it is really a reflection of what we are doing on a weekly basis. We are living and breathing this work, and really strongly collaborating with everybody else who does it.

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[The Chair]

I am afraid that has to bring this session to a conclusion. Dr McLaren, Dr Mewett and Dr Fellingham, thank you for giving up your evening for us. The Committee is indebted to you. Thank you very much indeed and have a good night. While we are changing over, I call the Member in charge of the Bill to move a motion.

[Kim Leadbeater]

I beg to move,

That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025 and amended on 28 January 2025, leave out “Professor Jane Monckton-Smith OBE” and insert “Hourglass”.

Unfortunately, we found out in the early hours of this morning that one of our witnesses is unable to join us this afternoon.

Question put and agreed to.

Examination of Witnesses

Professor Tom Shakespeare, Dr Miro Griffiths, Yogi Amin and Chelsea Roff gave evidence.

--- Later in debate ---

[The Chair]

I am sorry, but we still have more Members and questions than we have time, so I am going to come down to one question per Member.

[Kim Leadbeater]

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

[Danny Kruger]

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

Terminally Ill Adults (End of Life) Bill (Money)

Kim Leadbeater Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[Kim Leadbeater (Spen Valley) (Lab)]

On 29 November last year, in a debate widely described as showing Parliament at its best, this House sent the Terminally Ill Adults (End of Life) Bill into Committee for scrutiny by a majority of 55. It was the clear will of this place that the Bill should be allowed to proceed, in the knowledge that Members will have further opportunities on Report and beyond to decide whether it should be enacted. For that process to continue, the resolution before us today must pass.

Those who oppose the Bill on principle—something they are absolutely entitled to do—are seeking to suggest that there is something extraordinary or improper about this process, and on that they are simply wrong. This is a standard procedure that comes before this House all the time. Without it, there can be no Bill—that, I humbly suggest, is sadly what some people intend. This is not a blank cheque, as some Members have suggested. The right time to discuss the detail of what expenditure may be required is when we know the final shape of the Bill. At that point, if Members are concerned about the expenditure required, or indeed anything else, they can of course vote as they wish.

[Sir John Hayes (South Holland and The Deepings) (Con)]

The hon. Lady says that the right time to discuss the capacity of the judiciary and health service to deliver the Bill is presumably once it has completed its Committee stage, but should the Committee that considers the Bill have the impact assessment that allows it to scrutinise it line by line, mindful of the implications that it might have on our health service and our judiciary?

--- Later in debate ---

[Kim Leadbeater]

I respect the right hon. Gentleman’s question, but I would say that point is slightly out of the scope of the money resolution. However, I think it is a fair point, and I acknowledge that a lot of work is being done, as the Government said it would be, to look at the workability and operability of the Bill. I am working closely with Departments on those issues, and those conversations will continue, alongside the work of the Committee. I hope that provides him with some reassurance.

The other point is that I have never sought to stifle debate on the Bill or this really important issue; quite the contrary. I value it and I welcome it, but I do ask that it continues to be conducted in the same respectful and considered manner as on Second Reading. Where we disagree, let us do so with respect and without questioning each other’s motives or integrity.

[Ruth Cadbury (Brentford and Isleworth) (Lab)]

I congratulate my hon. Friend on how she has conducted this important debate. On stifling debate, does she share my hope that there will be no vote against the money resolution, because such a vote would end debate? While there was a strong vote in support of the Bill, there were many strong arguments for amendment and there was opposition. Does she agree that that debate needs to happen as the Bill proceeds and not be stifled and ended today?

[Kim Leadbeater]

I absolutely agree with my hon. Friend. Having done such a powerful job of debating this issue on Second Reading, it is crucial that we continue that debate in the right manner, as Parliament voted to do. It would be wrong for anything that happens today to put a stop to that debate and those discussions.

Let us not forget that the public are watching our deliberations carefully and that the issue we are discussing means a huge amount to many people. It is extremely serious and, for many, hugely emotive. We owe it to our constituents to treat it with the seriousness it deserves. I ask Members to consider carefully what it would say about us as a Parliament if such an important debate were to be curtailed as a result of procedural manoeuvring, which, sadly, is what I worry is being attempted by some colleagues today.

The money resolution is not about the pros and cons or the detail of the Bill; it will simply allow for proper scrutiny—including of any cost involved—to continue, and mean that the Bill Committee can begin its important work. I urge Members to support the resolution.

[Several hon. Members rose—]

--- Later in debate ---

[Brian Mathew]

There would be added expense. Social workers are trained in understanding family dynamics, and need desperately to be involved in these situations.

[Kim Leadbeater]

I take that point on board. I had a very productive meeting with the Association of Palliative Care Social Workers yesterday, and we had a useful conversation on that issue.

[Brian Mathew]

I thank the hon. Lady.

Hospice and Palliative Care

Kim Leadbeater Excerpts

Monday 13th January 2025 Commons Chamber

[Mr Paul Kohler (Wimbledon) (LD)]

I beg to move,

That this House has considered hospice and palliative care.

First, I thank the Backbench Business Committee for granting time to support this important debate, and I thank colleagues from across the House for supporting my application and joining me today to discuss a subject that, to use an old cliché—but in no more apposite a context—is truly a matter of life and death.

When this House debated the Terminally Ill Adults (End of Life) Bill last November, the crisis in hospice funding and concerns over the provision of palliative care were a constant refrain in the subtext of many of the speeches from supporters and opponents of the Bill. As someone who entered the Chamber that morning undecided as to how I would vote, I became increasingly convinced throughout the five hours of powerful argument and testimony that no matter what the House decided, the time had come to address hospice funding for the provision of palliative care head on, for death is as much a part of life as living.

While as parliamentarians we readily focus on what makes a good life, we rarely consider what makes a good death. It is possible to have a good death, as I saw with my mother, who passed away in comfort at the beautiful Arthur Rank hospice in Cambridge, and with my father, who died in the exceptional palliative care facility at Bellevue hospital in New York. As a family, we remember those times as sad, but cathartic, with moments of laughter as well as tears, as when my father—somewhat confused towards the end of life, but with a glint still in his eye—asked, as I sat next to him stroking his forehead, whether I was a lady friend.

Sadly, however, too many in our society do not experience a good death, and we need to start asking why. The hon. Member for Spen Valley (Kim Leadbeater) bravely took on that challenge with her private Member’s Bill, and I hope that this debate will afford us an opportunity to build on those foundations.

[Kim Leadbeater (Spen Valley) (Lab)]

Does the hon. Member agree that the renewed focus on the hospice and palliative care sector is extremely welcome and overdue? Does he agree that the extra £100 million of investment shows how seriously this Government are taking the issue, showing that people approaching the end of life are fully supported in whatever choices they make?

[Mr Kohler]

I agree with the hon. Lady, and I will be coming to those points.

Today is not about rehashing the arguments made that Friday, but to allow Members time to discuss and reflect on this separate, but inextricably linked subject. It is not the last word on hospice and palliative care, but an important step in forging a consensus that I hope will unite us, no matter where we ultimately stand on assisted dying.

I began by referencing the crisis in hospice funding. Before I proceed further, I echo what the hon. Member for Spen Valley said and thank the Health Secretary for the £100 million in capital and digital moneys he announced last month. It will make a profound difference to the sector’s current financial position. I have been asked by individual hospices and Hospice UK to convey their genuine gratitude. In a similar vein, the Government’s recently announced commitment to extend the children’s hospice grant by a further year is deeply appreciated and equally vital to maintaining levels of service in this heartrending, but profoundly important part of the hospice movement. However, these are only short-term fixes and fail to provide the long-term funding and certainty critical to securing the future of the hospice movement.

Currently, only one third of hospice funding is provided by the Government, with the rest coming from charitable sources. That leaves hospices vulnerable to increased cost pressures, as can be seen in a recent Hospice UK survey, which found that at least 20% of hospices had cut services in the past year or were planning to do so. Becca Trower, the clinical director of the wonderful St Raphael’s hospice, which provides excellent care to residents in my Wimbledon constituency, was unambiguous when she told me:

“We have a funding crisis and we need to protect our hospice.”

Last year, that meant that St Raphael’s was forced to strip £1 million from its £6.5 million budget by ending its hospice at home service that provided vital care, advice and support to patients and carers in their own homes. It was a virtual ward, in fact, but not one that fitted within the NHS definition of such, which would have attracted the separate integrated care board funding available for such initiatives. In just one month, the cuts to the service directly impacted 26 patients, many of whom spent their last days taking up valuable hospital beds, dying in the one place they did not want to die and putting further pressure on the NHS. When the Government are aiming to move medicine into the community, it makes no sense for hospices to be forced into a position that achieves the opposite.

That contradiction is mirrored in the current funding settlement, where the Government have given with one hand and taken with the other by increasing employers’ national insurance contributions. The refusal to exempt charities will exacerbate the challenges confronting hospices. The amazing Shooting Star children’s hospice, for example, provides wonderful support for families in my constituency. It estimates that the change will add another £200,000 to next year’s cost base.

Hospices need certainty. Doubts over funding undermine morale and sap energy, making the recruitment and retention of staff another huge issue for the sector. To address these problems, the Government need to introduce a consistent, reliable funding mechanism that reflects the rising costs of care. Hospices consequently need to be included within the NHS’s much-anticipated 10-year health plan. In parallel, staffing needs must be addressed in the next NHS long-term workforce plan.

It should not be forgotten that hospices provide a variety of services in addition to palliative care, including emotional, psychological and spiritual support, as well as physio and occupational therapy, practical support, complementary therapies, respite care and bereavement services. Much of that is beyond the clinical, and not something that the NHS can be expected, nor can afford, to provide. That is why no one I spoke to in the hospice movement thought that hospices should be subsumed within the NHS. They provide a complementary service that extends well beyond the clinical, and to which a charitable funding model is more effective and appropriate.