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 (Twelfth sitting)

Sarah Green Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Dr Opher]

There is a lot to talk about in this group and I thank you, Mr Efford, for calling me to speak. I would also like some confirmation about the term “medical condition”, and I agree with the hon. Member for East Wiltshire that we need to absolutely nail that. I am still to be convinced on the question of a condition that does not come under illness or disease but would come under “medical condition”, so I agree that we need to be very clear about what that means.

Frailty is very often diagnosed in older people and I fear that “medical condition” could be equated with that, which would open up the Bill. We need to decide whether we want to do that. Personally, I would not support that in any way. If this is an opening for that, we need to close it, so I agree with the hon. Member in that respect.

Some of the other amendments do not materially add anything to the Bill. On changing “an inevitably” to “a typically”, I do not think that would change the Bill—in fact, I think it would weaken it slightly, so I would not support amendment 123.

Both amendment 11 and amendment 181 talk about how we can exclude mental health issues as a cause for seeking assisted dying. My personal feeling is that the Bill is strong enough as introduced to exclude that. I point people to clause 2(3):

“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of—

(a) a mental disorder, within the meaning of the Mental Health Act 1983;

(b) a disability, within the meaning of section 6 of the Equality Act 2010.”

I think that is pretty tight; I do not think that people with anorexia could be given an assisted death under this legislation. That is my personal view, and I am happy to be persuaded otherwise if the whole Committee thinks we need to tighten up the measure significantly. It is important to make that very clear so that the Bill cannot be amended away from what we wish it to be. I think all of us would say that we do not want patients with anorexia to be able to access assisted dying—I have not spoken to anyone who does not agree—so the question is how we nail it down in the Bill.

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

I have great sympathy with amendment 11 in particular, which is clearly motivated by a desire to ensure that having a mental illness or disability alone does not qualify someone for an assisted death under the Bill. It is worth saying that clause 2(3) already does that and, therefore, the amendment is not necessary. However, the hon. Member for Spen Valley has tabled amendment 181, which further tightens that language. In my view, amendment 181 strengthens the Bill by simplifying the language to make it absolutely clear that a person is not considered to be terminally ill if they have a mental disorder or a disability alone. The chief medical officer, Professor Whitty, encouraged us to keep this simple, and that is precisely what amendment 181 does. Therefore, I support the amendment.

[Rebecca Paul]

I rise to speak to amendment 11, which stands in the name of my hon. Friend the Member for South Northamptonshire. This is one of the areas of the Bill where we all agree on what we are trying to achieve, so it comes down to making sure that the drafting does exactly what we all intend in order to protect people.

The definition of “terminal illness” in the Bill has two components. The first is that the person has an inevitably progressive and irreversible condition; the second is that their prognosis is less than six months. An issue raised in our evidence sessions is that there is a risk that a person with a mental disorder or disability will meet that definition if they are suffering physical symptoms that mean that they satisfy both parts of the test; a possible example could be a young woman suffering with severe malnutrition as a consequence of anorexia. With respect to the point that the hon. Member for Stroud made, I agree that anorexia on its own would not qualify, but the issue arises when there is a physical manifestation from that disorder such as severe malnutrition or even diabetes, which can co-occur, as we heard in the evidence sessions.

It is clear that that is not the intention of the hon. Member for Spen Valley or anyone on the Committee, as evidenced by the inclusion of subsection (3). I thank the hon. Member for making that point; it is much welcomed. However, in oral evidence, Chelsea Roff said that

“we have case law in the UK where people with anorexia are being found to be terminal. We have to take that reality into account.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 153, Q194.]

Before I get into amendment 11, which aims to address the issue, it is important to understand what clause 2(3) is trying to do. It reads as follows:

“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both”

of a mental disorder or a disability; it refers to the relevant bits of law. As my hon. Friend the Member for East Wiltshire has set out, the words “for the avoidance of doubt” make it clear that this is a clarifying subsection that does not make any change to the rest of clause 2. It appears to be clarifying that mental disorders and disabilities alone will never qualify someone for assisted dying—I think we all concur with that—unless they also have a physical condition that meets the terminal illness test, namely that it is inevitably progressive and irreversible and that the person has a prognosis of less than six months.

This is where the problem lies. If someone has a physical condition arising from their mental illness, such as severe malnutrition resulting from anorexia, and if the physical condition meets the definition of a terminal illness, they will qualify. As the Royal College of Psychiatrists said in its position statement:

“The wording of the Bill could also be interpreted to include those whose sole underlying medical condition is a mental disorder. While anorexia nervosa, for example, does not itself meet the criteria for terminal illness as it is not an ‘inevitably progressive illness, disease or medical condition which cannot be reversed by treatment,’ its physical effects (for example, malnutrition) in severe cases could be deemed by some as a terminal physical illness, even though eating disorders are treatable conditions and recovery is possible even after decades of illness.”

To remedy the issue, amendment 11 would remove the words “For the avoidance of doubt”, to make this a legally effective clause, rather than just a clarifying one. That means that it is providing an additional safeguard to those with mental disorders and/or disabilities. It would also remove the word “only”, to ensure that a physical condition resulting from a mental disorder or a disability will not make a person eligible for assisted dying. The amendment is further bolstered by amendment 283, tabled by the hon. Member for York Central, which would make it clear that comorbidities arising from a mental disorder do not qualify a patient for an assisted death.

I thank the hon. Member for Spen Valley for tabling amendment 181 to try to address the issue, but I do not believe that would quite solve the problem, which is quite a tricky one. “For the avoidance of doubt” would still be there, as would “only”. The sentence beginning with “Nothing in this subsection” makes it crystal clear that if a condition meets the six-month condition and the rest of the definition, it will be considered a terminal illness. There is therefore no exclusion for physical symptoms manifesting from mental illness or disability, which I think is what we are all trying to get to.

In my view, the only amendment that would address the issue is amendment 11, tabled by my hon. Friend the Member for South Northamptonshire. It would remove both “For the avoidance of doubt” and “only”, and would therefore better ensure that a physical condition resulting from mental illness or a disability does not make a person eligible for assisted dying.

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

Sarah Green Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Kim Leadbeater]

I am done.

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

We have had a good debate on the amendments in this group. I do not intend to push amendment 278 to a vote, and I have nothing further to add to my previous remarks. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 8, in clause 4, page 2, line 16, leave out from “practitioner” to end of line 20 and insert

“shall raise the subject of the provision of assistance in accordance with this Act with a person who has not indicated to that or another registered medical practitioner that they wish to seek assistance to end their own life”.—(Daniel Francis.)

Question put, That the amendment be made.

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

Sarah Green Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Liz Saville Roberts]

While I agree with the hon. Member in principle, I am operating within the law in terms of Welsh and English, because there are legal considerations with those two languages in particular.

In the matter we are discussing, the ability for the person to communicate as directly as possible is of the greatest importance. I wonder whether the Minister will respond by saying that the codes of practice in clause 30 will be sufficient, but I emphasise that I took advice from the Welsh Language Commissioner’s office, and it was the Welsh Language Commissioner’s officer who advised that I table the amendments. We are operating in unique circumstances with this being a private Member’s Bill, and we need to have clarity on what is required in relation to how the legislation operates between England and Wales.

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

The hon. Lady will know that the Welsh Language Act 1993 put the Welsh language on an equal footing with the English language in Wales. Does she agree that it would be helpful to have clarity on whether the provisions in that Act apply to the Bill?

[Liz Saville Roberts]

That is exactly what I am seeking to do, and I am seeking to do it as co-operatively and collegiately as possible. But we need to have clarity on this, and our discussions need to be thorough and exact in order to be accurate.

When it comes to the individual’s right to use Welsh in their daily lives, two pieces of legislation are relevant to the Bill: the Welsh Language Act 1993, which predates devolution, and the Senedd’s Welsh Language (Wales) Measure 2011. The Welsh Language Act remains applicable for reserved matters, such as justice, and the Ministry of Justice operates a Welsh language scheme that enables people to use Welsh in courts, tribunals and other areas of justice. The Welsh Language Measure established the office of the Welsh Language Commissioner, who has the power to investigate complaints from Welsh speakers who assert that their freedom to use Welsh has been interfered with; created a Welsh language tribunal to hear appeals against the commissioner’s decisions; and enabled the development standards, which are particularly significant here.

The Welsh Language Measure states that individuals in Wales should be able to conduct their lives through the medium of Welsh if that is what they choose to do. Under the Measure, the NHS in Wales has a statutory duty to deliver services to the public in both Welsh and English. The Welsh language standards are a set of statutory requirements that set out responsibilities to provide services, and they apply to health boards in Wales, as well as to NHS primary care services that are contracted by the health boards. The standards do not apply to independent providers, which since 2019 must follow six Welsh language duties, one of which is to establish and record the language preference of patients. That is where I have got the terminology used in amendment 413.

That is a summary of the relevant considerations but, before I close, it is important to say why this matters to Welsh speakers. I spoke recently to medical practitioners in Wales who wanted me to emphasise their concerns at the lack of specific mention of language rights. I also spoke to the Welsh Language Commissioner’s officers, who advised me on the necessity of the amendments. There is a critique against providing Welsh language services that shrugs its shoulders and says, “Why bother? They all speak English anyway.” That is to ignore how integral language use is to the individual.

We are drafting a Bill to do two things in a very delicate balance: to respect the autonomy of the individual and to safeguard people against abuse in any form. For many Welsh speakers, Welsh is the language of their emotions. It is the language in which they express themselves most fluently, and the first language of their feelings. It matters to this Bill. English is the language of authority, and many Welsh speakers are anxious not to challenge the authority of high-status people such as doctors. They do that out of ingrained politeness, and out of fear of not being able to access services if they put any barriers in the way. That is the way that language gets used. Welsh speakers do not use Welsh in the way that monolingual English speakers use English; monolingual English speakers use English because it is the only language they have. For anyone who is bilingual or multilingual, the use of language is very complicated and sophisticated, and we need to be alert to it in all its respects.

I return to the nature of the relationship between doctors and their patients. Doctors have high status, and a patient approaches a doctor seeking services, advice and context. That is not a power dynamic that we should allow to go unchecked, so I urge the Committee to consider the amendment. I do not intend to press it to a vote, but I want a response from the Ministers. Before Report, I want absolute clarity on its legal necessity or otherwise. I feel instinctively—especially because the Welsh Language Commissioner’s office has told me this—that it should be in the Bill. I would also like a response from Ministers on amendment 414, tabled by the hon. Member for Ipswich.

Terminally Ill Adults (End of Life) Bill

Sarah Green Excerpts

Report stage
Friday 20th June 2025 Commons Chamber

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

I rise to speak in favour of this Bill. First, though, I thank the hon. Member for Spen Valley (Kim Leadbeater) for the way in which she has approached the Bill, and for having engaged with Members across the House on both sides of the argument on their various amendments. I voted in favour of the Bill on Second Reading on principle, but also because of something a constituent said to me about the status quo. She said, “It is cruel”, and I cannot disagree with her. It was definitely cruel for my constituent Ann, who was interviewed by the police for supporting her husband in going to Dignitas. For weeks afterwards, in her grief, she faced the uncertainty of a police investigation.

For me, the current system is unsatisfactory, and it was a real privilege to join others to scrutinise this Bill in Committee. It is my belief that it is stronger for having gone through that process. There is one change in particular I would like to speak to, which is the inclusion of social workers on the panel. People in that profession deal with complex, challenging, and sometimes dark family dynamics on a daily basis, and I believe that including them on the panel is the right thing to do. For those reasons, I will be supporting this Bill today, and I hope others will too.