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

Sarah Green Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Naz Shah]

Q We have had lots of witnesses testifying about gaps in palliative care and end-of-life care provision here in the UK. What is the current state of palliative care and end-of-life care provision in Western Australia, please?

Dr Furst: I am in South Australia, but a recent survey by Palliative Care Australia surveyed over 900 palliative care specialists, and more than 80% of patients receiving voluntary assisted dying are actually getting combined palliative care and voluntary assisted dying. In our legislation in South Australia, there are key provisions for the monitoring of the funding to palliative care to ensure that no palliative care funding is diverted to voluntary assisted dying, but we feel very strongly that palliative care and voluntary assisted dying should go hand in hand. That is a feeling that is being seen around the country now. Palliative care physicians who are finishing off training now see voluntary assisted dying as part of their core business. It is no longer seen as something that should be provided by separate practitioners. It is really becoming quite integrated.

Professor Blake: I am coming in from Western Australia. We were the second jurisdiction in Australia to introduce voluntary assisted dying laws. Ours have been operative since July 2021, so we have had the opportunity to collect quite a lot of data. Year on year, the number of people utilising voluntary assisted dying in Western Australia is increasing. In the year 2023-24, there were 292 deaths by voluntary assisted dying, which represented 1.6% of WA deaths. I agree with Chloe and confirm her view around the palliative care side of things: 83.8% of those persons who accessed voluntary assisted dying were also accessing palliative care.

[Sarah Green (Chesham and Amersham) (LD)]

Q On that point about palliative care, I will direct my question to Dr Furst. What has been the response from palliative care professionals to the introduction of assisted dying in Australia? We have heard evidence from people working in the sector in the UK, but I am keen to hear about your experience in Australia. I understand that Palliative Care Australia’s national workforce survey explicitly looked at this, so I am keen to hear what its findings were.

Dr Furst: It has been a journey, certainly. Victoria started their voluntary assisted dying in 2019. I would be lying if I said that the palliative care community were completely on board with it at that point, but over the last five to six years there has been a real shift in mentality. We have seen that they can go hand in hand. Palliative care is about end-of-life choices. Voluntary assisted dying is about end-of-life choices. It is about putting the patient and the individual front and centre, and working with them. That is fundamental to palliative care. We have realised that voluntary assisted dying is a promotion of palliative care and it gives back choices.

Probably some of the older palliative care clinicians have not embraced voluntary assisted dying quite as much. That is probably very generalised, but certainly new consultants and new doctors that are coming through really see this as something that they want to do. I do not think that there is any animosity any more between the practitioners that choose to work in this space and those that do not. I get huge amounts of support from other palliative care physicians that do not necessarily act as practitioners. There is no real divide. It has been embraced, to be honest. In another five years, I think there will probably be very few palliative care practitioners who do not support this, unless they are true conscientious objectors for their own reasons—I guess, probably religious reasons. Palliative Care Australia and the peak medical bodies in Australia have generally shifted to see this as part of patient choice.

Alex Greenwich: The journey to voluntary assisted dying in New South Wales, and indeed across every Australian state, has benefited palliative care access and funding. In New South Wales, 85% of people who have accessed voluntary assisted dying are receiving palliative care. As part of the process, the co-ordinating and consulting practitioners also advise them on palliative care. The doctors are trained on the latest advances in palliative care. Baked into the principles of our legislation is access to palliative care for all citizens of New South Wales. Importantly, throughout our debate, whether Members supported or opposed the reform, our entire Parliament came together to ensure palliative care received an increase in funding and any access issues were addressed. The Australian experience with voluntary assisted dying is that it benefits and strengthens the palliative care system.

Professor Blake: Can I can I add to that? The Voluntary Assisted Dying Board in WA, as in all the other jurisdictions, produces a report. The very strong sentiment of the Voluntary Assisted Dying Board, and indeed within the Western Australia community, is that voluntary assisted dying is seen as part of the end-of-life journey. The board’s report states that the statistics and experience of Western Australians

“confirms…that voluntary assisted dying is an established and enduring end of life choice”.

For that reason, there has been quite a significant awareness that practitioners should be able to bring up voluntary assisted dying with the patient as part of that suite of end-of-life choices. That has been something that the evidence has suggested is very important, because if the practitioners are feeling that they cannot raise it in that context, that is having a detrimental effect on the patients who would like information on it. That has been our experience in Western Australia.

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

Q My question is to you, Mr Greenwich. I understand that in New South Wales—and please do correct me if I am wrong—similarly to the Bill we are proposing, you adopted legalised assisted dying for those who are terminally ill and will die within six months, but you also added an additional criterion, which was within 12 months for a neurodegenerative disease such as motor neurone disease. That element is not proposed in our Bill, but we have heard from other witnesses over previous days about that issue. What reflections might you have regarding that, and why did you add that element into the Bill beyond the six months that we are proposing here?

Alex Greenwich: Thank you very much for your question. At the outset, I will just stress that every jurisdiction should legislate the form of voluntary assisted dying that is appropriate to them. In New South Wales, that was six months for a terminal illness, or 12 months if that terminal illness was a neurodegenerative disorder. We had learned from the other schemes in Australia that that was going to be important because of the decline that occurs in neurodegenerative disorders like motor neurone disease, for example. It was because of that that we went down that path.

Professor Blake: I should add that in Queensland, there is no such distinction in life expectation between other diseases and neurodegenerative diseases. Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses. The Queensland Parliament took a different approach to address that particular feedback.

Dr Furst: From South Australia’s perspective, we are similar to New South Wales; we have less than six months for all conditions bar neurodegenerative conditions, which is less than 12 months. As a clinician, personally, I think that 12 months for neurodegenerative conditions is really helpful, because—as you have heard—if you are looking at prognosis and trajectories, with things like cancer, a patient will be going along and then often have quite a steep and rapid decline. That six-month prognosis is quite noticeable, but for patients with conditions like motor neurone disease, their decline can be slow and very distressing to them. Also, when trying to balance the prognosis along with getting them through the process, 12 months is really helpful, so if there was any chance, I would be strongly advocating for that.

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

Sarah Green Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Sojan Joseph (Ashford) (Lab)]

Q Professor Owen, written evidence from the Royal College of Psychiatrists states that 65% of psychiatrists

“are not confident that consent can act as an adequate safeguard”.

On mental capacity, it says:

“These decisions are opinions with a margin of error and are time specific. A person’s capacity can change”.

What is your view?

Professor Owen: That is important evidence, because it comes from a body of practitioners who are very used to doing mental capacity assessments. I think that the vast majority of that sample were consultant psychiatrists, so the pool, as it were, was one of considerable experience. That conveys questionable confidence in the consent processes, of which mental capacity is part, in relation to the decision to end one’s life. It is significant evidence about the confidence that is out there among experienced practitioners.

It is true that psychiatrists—liaison psychiatrists particularly; I have had experience with this myself, clinically and in relation to Court of Protection matters—will be involved with assessing capacity to make decisions to refuse life-sustaining treatment. Those decisions can be quite vexed and can go to the court, and the court can struggle with them.

An important question for the Committee is the distinction—or the similarity and difference, but I think that there are key differences—between the decision to refuse a treatment that is life-sustaining, of which the Court of Protection does have experience, and the decision to decide to end one’s own life. They are conceptually different decisions. I can outline some of the similarities and the differences now, but it might be helpful to take submissions specifically on that question, because it is very important and I think that there is some confusion about it. If you would find it helpful, the complex life and death decisions group could write a statement to elaborate on some of the issues. In summary, I think that that evidence from the Royal College of Psychiatrists is significant, in terms of the confidence.

[Sarah Green (Chesham and Amersham) (LD)]

Q Dr Ward, I am keen to hear about your work on the Bill in the Scottish Parliament and about how best practice in other jurisdictions has informed the legislation that is currently going through Holyrood. How has it influenced and informed that draft?

Dr Ward: I was the adviser on the previous Bill in Scotland as well, under Margo MacDonald MSP and Patrick Harvie MSP. That was in session 4 of our Parliament; we then did not have a Bill in session 5, which is when we set up things like the cross-party working group on end-of-life choices and I did the PhD. Luckily, we saw a domino effect internationally in session 5; there were various jurisdictions legislating for it. When we came to draft this legislation in 2021, in session 6 of the Parliament, we had decades of data that we had not had when Margo made her first attempt back in 2010.

With the Assisted Dying for Terminally Ill Adults (Scotland) Bill, we have been working with international experts since 2021, and we have had various consultation processes. It is currently with the Health Committee of the Scottish Parliament. We set up a medical advisory group, chaired by Dr Sandesh Gulhane MSP: a group of almost a dozen practitioners in palliative care, mental health experts, geriatricians and other interested stakeholders. It produced a report for us on the medicinal aspects of the Bill.

That has been a four-year process. I understand that concerns have been voiced in this Committee that things have proceeded at pace, but I would argue that you are not pioneers. There is 20 or 30 years’ worth of data, which we have drawn on in Scotland, and there is four years’ worth of work in Scotland that this Committee and this Parliament could look to.

I would also make the point that the data is peer-reviewed and evidence-based. You really have to trust your international colleagues. The data is from Government bodies, from Health Departments, from independent academic peer-reviewed work and from independent review boards. We are now looking at fact rather than at falsehoods or concerns, as we were back in 2010.

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

Q Clause 9(3)(b) would permit an assessing clinician to refer to a psychiatrist if they have concerns about the assessment of capacity. Some have suggested that in fact all patients who are seeking a voluntary assisted death should be assessed by a psychiatrist. Professor Owen, in terms of workforce capability and capacity, is it reasonably practicable to have a consultant psychiatrist assessing each and every one of these patients?

Professor Owen: I think the answer to that is “Probably not,” given the current workforce. Another relevant point is that even if you were to insert into the Bill a very clear requirement for a consultant psychiatrist to be involved if there were concerns about mental health, what would happen in practice would be very different. You can see this in Oregon, whose law has a requirement for, essentially, a psychiatric referral in the case of mental health concern. Those referrals basically occur in less than 5% of cases; I think it is similar in California. Even if you put it in law, there is the question whether it will happen in practice. On the data, it does not. I think that that is a relevant consideration.

--- Later in debate ---

[Liz Saville Roberts]

Q Could you expand somewhat on which aspects those are?

Professor Lewis: As I am sure you are aware, the Parliament here in London can legislate about anything at all—absolutely anything. However, where the power to legislate is given to the devolved legislatures, the Sewel convention states—in the Government of Wales Act, in section 176, I think—that the Parliament in London will

“not normally legislate with regard to devolved matters”.

That is what is said. Therefore, there are certain aspects of this Bill—I will give you brief detail on that—that, in my opinion, relate to devolved matters. The first is clause 32. This is a very broad clause that would give the Secretary of State very broad powers for the implementation of the Bill within the NHS, including within the NHS in Wales. It seems to me unarguable that that is a matter both on which the Welsh Government ought to be consulted and which would require legislative consent from the Senedd.

The second is a cluster of clauses that impose specific functions on Welsh Ministers and on the chief medical officer for Wales. They are clauses 31, 33 and 34. Once more, from a formal perspective, they seem to require a legislative consent motion, so it seems to me that some thought needs to be given as to how that might happen in the context of a private Member’s Bill.

[Sarah Green]

Q To follow up on what you just said about legislative consent, in October of last year, the Senedd voted against Julie Morgan’s assisted dying motion. In your opinion, what implications does that have for the Bill and its progress?

Professor Lewis: A motion was put forward by Julie Morgan that was supported by three or four Members of the Senedd, which was broadly in support not of this specific Bill, but of the purpose of this Bill, and it was defeated, as you say, after a full debate on the Floor of the Senedd. Formally, legally and constitutionally, that is of no consequence, because it was not a legislative consent motion, and of course, as I said earlier, this Parliament is able to do what it likes. It could totally disregard that. Whether that would be a prudent or an appropriate thing to do, or even what one might describe as a constitutionally appropriate thing to do, is another matter.

I think it reinforces the point that there is a significance in making sure that scrutiny of the Bill has a Welsh focus. You might consider, for example, making different provision in Wales. How do you respect what was a democratic vote in the Senedd in Cardiff? Well, you might consider having different commencement provisions—I am not advocating this, it is just an example of what you might do. Commencement of the Bill in Wales might happen in a different way, on the assumption it was passed. You might put that in the hands of Welsh Ministers and the Senedd, just as an example.

[The Minister of State, Ministry of Justice (Sarah Sackman)]

Q To be clear, I am here as a Government Minister on this Committee, and the Government are entirely neutral on the Bill, so we do not take a position on the substance of the issues you have raised. Clearly, the draft Bill is intended to apply in both England and Wales, as you say, and your note is extremely helpful in highlighting some of those issues that will need to be worked out. As a Government, we will work closely with the Welsh Government to assess the legalities and practicalities of any potential changes to the law.

You have highlighted in particular the distinctions between health law, which is a devolved matter, and the law on suicide, which currently is not devolved. On the first page of your written evidence, you draw out clauses 32, 31, 33 and 34 in particular as issues that we should focus on in ironing out those legalities. Is there anything else you want to add to that that you think that we as a Government should focus on in our work consulting with the Senedd?

Professor Lewis: I think it is important that both Governments understand how the implementation of what will be a pretty radical change in the law will happen on the ground within the health service and among those who are responsible for delivering social services. I am thinking of issues such as adult safeguarding, which in Wales has its own specific law and is slightly different from the arrangements in England. There are those kinds of nuances between the two territories, and I think it would be prudent to focus on them.

I also think it is wise to bear in mind that Wales has certain statutory bodies whose interests might extend to the Bill. For example, there is the Older People’s Commissioner for Wales, in particular; there is the Future Generations Commissioner for Wales as well. I think it is important that there is some forum, some scope, for those people also to be involved in how this is shaped.

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

Sarah Green Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Sarah Green (Chesham and Amersham) (LD)]

Q Dr Clarke, what are the existing statutory guidelines on end-of-life practice? How are those decisions logged, recorded and monitored?

Dr Clarke: The fundamental principle is always that, by default, the patient has capacity unless there is clear evidence that they do not. We presume that patients have capacity. As doctors, we are obliged to ensure that patients have informed consent when deciding between different treatments. That means we need to lay out the whole array of treatment options, and the risks and benefits of each, to empower individual patients to make decisions for themselves.

Regarding the issue that has been alluded to of whether doctors should be prohibited from raising the issue of assisted dying, it is my belief that that would fundamentally alter the doctor-patient relationship. If consent is not informed—and it is not informed if we are not laying out all the different options to a patient—we are denying patients the opportunity to make decisions for themselves. A patient is always able to refuse every treatment, and in particular every life-prolonging treatment, that they choose to, provided they have capacity. We, as doctors, may think that a decision is unwise, but that is irrelevant, because those days of bad old paternalistic medicine are gone. The patient makes the choice. If a patient says, “I do not want chemotherapy. I do not want to eat. I do not want anything at all—no treatment”, we respect that, unless they lack capacity.

The elephant in the room with all of this is the capacity assessments. I would suggest that anybody who pretends that those assessments are easy and routinely done well in the NHS has not got enough experience of observing that happening. I teach capacity assessments to doctors and medical students, and it is often the case that they are very poorly conducted. The doctor often does not understand the criteria for assessing capacity. That is if it happens at all. Sometimes, a paternalistic doctor will decide that a patient is dying, and we should stop their antibiotics because they are clearly now at the end of their life. They have a chat with the family, who say, “Yes, we agree,” and nobody talks to 82-year-old Mrs. Smith and asks her what she feels about it, because they assume that she does not have capacity because she is old. I see that regularly. Sometimes, a palliative care team will intervene in those situations, because the professional and legal framework that is meant to guide this practice is just not happening. It is a very fraught and tricky area.

If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training from day one of medical school onwards. Death is at the periphery of a medical school curriculum. Death and dying are not taught. You might get a week of palliative care in five years, and that has knock-on effects all the way through, at every level of seniority in the medical workforce.

[Sarah Green]

Q I have a follow-up question. The Bill introduces a monitoring and review process, including an annual report by the chief medical officer. Do you have any reflections on whether that needs strengthening?

Dr Clarke: Yes, I think that in the spirit of transparency and making this as safe as possible, it needs to be significantly strengthened. I would suggest that there need to be more safeguards in place. For example, if anyone in a hospital—whether staff, patient or family member—has concerns around a particular case, there should be mechanisms for those to be raised in a proactive way. Just as we have guardians of safe working and freedom to speak up guardians in hospitals, those opportunities to assess and appraise the safety in real time once a Bill is in place—I just do not think they are robust enough at all. The more we can have of that, the more that will allay people’s fears.

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

Q My question is to Dr Ahmedzai. In the paper you produced you talked about specific recommendations regarding the training and experience of the doctors involved in the process. You suggested five years, for instance, and some other experience. Have you got examples elsewhere in the world where such a scheme has been implemented? Do you believe that we have enough trained doctors in the United Kingdom who have that level of experience and would therefore be taking part in this part of the process?

Dr Ahmedzai: You have caught me on the hop, because I cannot quote the level of training that doctors have received elsewhere, except for examples in the Netherlands, where there are additional doctors who are, through their medical association, trained specifically in assisted dying. I cannot tell you the number of years’ experience that doctors have in other countries. I felt that it was self-evident that you would want doctors who are experienced—three years, five years or whatever post qualification—and who have seen real life. It is up to the medical associations to stipulate how much experience, but I would not like the idea of a doctor immediately, having got their certificate of training, going off and making these kinds of decisions. That is why I suggested that ballpark figure.