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

(Limited Text - Ministerial Extracts only)

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

For the benefit of our guests, the next questioner, Stephen Kinnock, is our Health Minister.

[The Minister for Care (Stephen Kinnock)]

Q I have a specific question about the period between the legislation passing in your Parliament and the commencement of its provisions and the implementation of voluntary assisted dying. Can you say a little more about what had to be done in that period: the institutional arrangements that were needed between the Act’s passage and its commencement, and the training, capacity building and practical measures that you had to put in place? Did you do that from a standing start, so that in that 18-month period you went from having no training and no institutional set-up to being ready to take the system forward?

Dr Fellingham: Our law was passed on 19 December 2019 and came into effect on 1 July 2021. Ostensibly we had an 18-month period, but of course something fairly dramatic in health happened in 2020. Despite that, what happened at Department of Health level began first. The Department of Health set up an implementation leadership team and gathered specialists together from all across Western Australia in various different aspects. They had eight different workstreams looking at the eight different parts of the Act that they had to operationalise—the pharmacology, the substance and what that was going to look like, the doses and how it was going to be administered, the set-up of the pharmacy, and things like that. Each of those eight workstreams worked everything out at a Department of Health level.

Approximately six months before the law was enacted—on reflection, that was probably not long enough, but covid was very much complicating everything at the time—they set up a working group with the clinical leads in the various health service provider organisations. We were then tasked with taking that broad overview and turning it into a service at the point of delivery, on the understanding that we understood the nuances and expectations of the different hospitals and health systems in which we operated.

I will not lie: it was an enormous task. I leant very heavily on our wonderful Victorian colleagues who had gone first. I do not know what I would have done if I had been the first to pave the way. Subsequently, I have been able to offer that level of assistance to each of the other states and territories that have gone after Western Australia, and then of course to the UK, Scotland and Jersey, which I have been working with quite a lot. There is a wonderful international, collaborative sense of information sharing and wanting to get this right, learning from experience and not reinventing the wheel.

The vast majority of the laws that apply across the whole of Australia and New Zealand are quite similar, and they are similar to what you are planning to legislate for in the United Kingdom. A lot of fantastic groundwork has been laid already, and it can be done even in a challenging healthcare context, like covid or our resource limitations.

[Stephen Kinnock]

Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?

Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state-wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.

[Danny Kruger (East Wiltshire) (Con)]

Q I am very grateful for your evidence; it is really useful. I want to state, for the record and for information, that we have before us today three professionals from Australia, all of whom support the laws in that country, and that we heard yesterday from two American doctors, who were also supportive of assisted suicide laws, even though in both countries there are many doctors who oppose what is happening. I regret that we are not hearing evidence from them, but it is very helpful to have your input.

Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?

Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non-terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.

What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.

But suffering is subjective and it is context-dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?

--- Later in debate ---

[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.

[Kit Malthouse (North West Hampshire) (Con)]

Q Could you talk us through eligibility with regard to neurodegenerative diseases, and whether you have in place any variations and considerations for things such as Parkinson’s or motor neurone disease? Is the main delivery mechanism for VAD in Australia the mainstream health service, or is it delivered through a separate wing, arm or organisation?

[The Chair]

Who is best qualified to answer, please?

Dr McLaren: Greg, I might dob you in for the neuro-degenerative perspective, if that is all right? I have been involved in several of those cases but, as a medical oncologist, it is a little outside my field.

Dr Mewett: In most Australian states, the law was made so that a patient was eligible if they had a terminal prognosis of six months or less, except in the case of a neurodegenerative disorder—the most archetypal would be motor neurone disease, but there are a number of other neurodegenerative disorders for which prognosis can be made, including Parkinson’s—in which case it was 12 months or less. We have been trying to tease that out as part of our Victorian VAD review board work, and we could not find the logical or consistent reason why there would be two different prognoses for different disorders. We think it was because the advisory to the legislators thought that patients with neurodegenerative disorders might lose capacity to continue with the process earlier.

We and all our learned colleagues know, however, that patients with all sorts of diseases can lose their cognitive abilities during their disease, particularly with cancer and motor neurone disease. We do not see that as logical or reasonable. In fact, as Dr McLaren said, we are considering recommending that prognosis is set at 12 months, which is what Queensland legislated for and practices. A 12-month prognosis is reasonable for a whole range of reasons.

[The Chair]

Thank you very much. I have three questions remaining and five minutes, so we need brevity, please.

[Kit Malthouse]

Sir Roger, can I ask about mainstream delivery?

[The Chair]

I am sorry but we have to move on.