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

Naz Shah Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

Do either of the other witnesses want to come in on that?

Dr McLaren: When we started this in Victoria, we saw a bit of a gap with the implementation. A lot of the education was surrounding the legalities of providing an assessment service in a way that conformed with the legislation, rather than that focused on the clinical skills and applications. I am quite proud of the role that we have had in rolling that out, in providing that peer experience, and in focusing more on some of the clinical skills that apply within a VAD context.

[Naz Shah (Bradford West) (Lab)]

Q I have a couple of questions. Dr Fellingham, Victoria is quite a rural state and I imagine there are difficulties reaching all parts of it. Am I right that a state-wide pharmacy service that delivers assisted dying drugs across the whole state has been set up, but there is no comparable service for the delivery of pain reduction?

Dr Fellingham: A point of clarification: I work in Western Australia, rather than Victoria, but I can give you a view for Western Australia, which is significantly larger, so the problem you have alluded to is much more complicated. Would you like me to speak about the Western Australian context?

[Naz Shah]

I was talking about southern Australia, in particular. That is fine; we can move on. Thank you.

Dr McLaren: I can speak to the Victoria question, if you prefer. To answer your question, we have a state-wide service that supplies the medication across the state. Medication for pain relief is available through standard pharmacy access, so there are no barriers to accessing medication for palliative purposes in rural Australia. It is quite hard to get voluntary assisted dying medication dispensed to Mildura, which is many hours away from the single-state pharmacy, so access is more difficult for voluntary assisted dying than for palliative medication.

[Naz Shah]

Q Thank you. The Australian and British media reported the tragic story of Cyril Tooze, an elderly and terminally ill 84-year-old man in southern Australia, who requested voluntary assisted dying. Mr Tooze stated that he was applying for voluntary assisted dying after waiting nearly a year for the state government to implement a care and housing package for him. He died while waiting for the application process to end. How much does social detriment influence requests for voluntary assisted dying? Please speak from your own experience and about published data.

Dr Mewett: From a palliative care perspective, like Cam and Clare, I have been involved in assessing and having discussions with many, many patients who have requested assisted dying. These patients come from a whole range of socioeconomic backgrounds. In fact, if anything, they tend to come from a perhaps slightly higher, more well-educated background. There is no evidence in our jurisdiction of Victoria, where we have had five and a half years’ experience, that people who are underprivileged, less educated or vulnerable in some other way have readier access to or apply more for VAD.

The case you alluded to, like many cases that are reported from Canada, is certainly tragic in its own way, but such cases are an absolute minority compared with patients who are genuinely determined to have a choice about the way they die and when. Those are separate issues: one is a social welfare issue, and the other is a VAD issue. A patient such as that would not be found eligible, unless he was eligible under the strict criteria that apply in the state in which he lived.

Dr McLaren: As Greg touched on there, when that gentleman applied for voluntary assisted dying, that may have been one of his drivers, but it certainly would not have made him eligible. He did not access voluntary assisted dying, so the system worked. We do see higher socioeconomic status patients applying for voluntary assisted dying. That is evidenced in our Voluntary Assisted Dying Review Board reports, which show a greater proportion of people with higher levels of education. That data is freely available through the Victoria Government website.

[The Chair]

Dr Fellingham, you had your hand up.

Dr Fellingham: Ms Shah asked for some evidence, and I have just looked this up. Our Voluntary Assisted Dying Board reports from Western Australia are also freely available, publicly searchable documents. Each year, the board asks the patients’ reasons for accessing voluntary assisted dying. In order of commonality, the only ones over 50% are

“Loss of dignity, or concern about it…Loss of autonomy, or concern about it”,

and

“Less able to engage in activities making life enjoyable, or concern about it”.

What that reflects to me is that the type of people who seek access to assisted dying are those who tend to be, as my colleagues said, more health literate and more socioeconomically advantaged than your average healthcare consumer, and people for whom the existential reasons that upset them about their disease process are the primary drivers for seeking access to voluntary assisted dying. It is very rarely the absence of service provision or because they feel that they do not have any other choice.

--- Later in debate ---

[The Chair]

I think that is a matter that we may have to pursue elsewhere.

[Naz Shah]

Q I have a quick question for Dr Griffiths and then Chelsea. Dr Griffiths, how does the Bill exacerbate issues for disabled women in particular who might be experiencing abuse or other vulnerabilities?

Dr Griffiths: There is no indication of how you would place the infrastructure for support for people whose discrimination or injustice is exacerbated through an intersectional lens—for example, the cross-cutting of different experiences—and how that can be attested for within the Bill. For example, if an individual comes forward to discuss with their doctor their concerns, there is no infrastructure for how that would be acknowledged with an intersectional critique.

There is also a concern that many within disabled people’s communities from particular backgrounds, such as women, are pre-exposed to further levels of injustice that are not accounted for, and their experiences of trying to access support for certain aspects of their life are compounded by inequalities. These issues are not addressed by the Bill. In my view, if this mechanism becomes available, the issues that some individuals face in terms of injustice will play into the consciousness of their decision to go forward with this. I cannot think of any clause or amendment that would address that issue in its totality.

[Naz Shah]

Q Before I move on to Chelsea, I want to point out that Professor Shakespeare said that most disabled people’s organisations support the Bill, but that only one deaf and disabled people’s organisation that opposes it is giving evidence. I just wanted that point noted for the Committee.

Chelsea, thank you for your evidence. Eating disorders are classified as mental disorders under the Mental Health Act. The Bill explicitly states that a person cannot be considered terminally ill only because of a mental disorder. You have also talked about the withdrawal of insulin. Could you respond to both of these? Why do you believe that eating disorders would still meet the criteria under the Bill, and likewise for the issue of stopping insulin?

Chelsea Roff: There is a false distinction being made in the Bill between a mental disorder and its somatic or physical manifestations. Mental disorders, especially eating disorders—not just anorexia—impact the body, and have life-threatening consequences. We had 20,000 acute hospitalisations for eating disorders in this country last year, and we have massive gaps in care. Those are individuals who, if they were to choose to forgo treatment or could not access treatment because they were on a wait list for a long period of time, would qualify under this Bill.

I draw your attention to the evidence I submitted with Dr Agnes Ayton from the Royal College of Psychiatrists, and Dr Angela Guarda, a leading physician from John Hopkins University. I also draw you to our own case law in the Court of Protection where we have had physicians represent eating disorders as terminal conditions, as in the end stage of their illness.

I am grateful that you have drawn the connection to diabetes, because it is not just about eating disorders. Substance use disorders would have the same effect. Outside of mental disorders, HIV/AIDS is a progressive condition that cannot be reversed by treatment. Are you okay with a 19-year-old young man who decides to discontinue treatment qualifying under this Bill? Those are the questions you have to ask. I am not, in principle, against the Bill, but you have to look at the letters on the page, because they will be interpreted after the Bill is passed. Your constituents are depending on you.

[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.