Interviewer: Torrin Wilkins

Interviewee: Dr Anna Negus

Torrin Wilkins: My name is Torrin Wilkins, the Director of Centre Think Tank, and today I am joined by Dr Anna Negus. We will be discussing the system of assisted dying used within Western Australia.

Anna has a wide range of experience as a provider under the Western Australia Voluntary Assisted Dying Act. She is also a specialist anaesthetist and a clinical lecturer at the Fiji National University. She has worked in the Pacific, Mongolia, Madagascar, and the Philippines.

So thank you so much for joining me today, Anna.

Dr Anna Negus: No problem. Thank you for taking the time to speak with me.

Torrin Wilkins: For my first question, any system that provides assisted dying must also avoid and detect any cases of coercion. So, what measures and systems are in place within the Australian system to do this?

Dr Anna Negus: So when I thought about this question, I thought, what precisely do we do? A lot of what we do is just making sure that we have adequate exposure to the patients and their families in the standard consultations which we provide. We talk with the families openly and discuss their beliefs in that space. I think generally that is the main reason why those sorts of things would come out in the wash.

You cannot ask specific questions, but I think, from experience, we find that there is very little evidence of coercion and there are very few signs of it that come out. When we are talking to people, it is generally in the opposite direction; more people are pushing others towards not taking voluntary assisted dying rather than trying to help them take it. Because at the end of the day, there is very little to be gained by expediting a few weeks for a family member.

But I think having two different doctors helps a lot because, of course, different doctors have different perspectives, different specialities, and skills, especially concerning communication. If you have two different points of view, that helps weed it out. We also communicate very much through the organisation of the statewide care navigator system, and I think that open communication among all of the providers is key in making sure that if anyone has any concerns, then they are relayed to the next provider, who can ask a few questions or try and look for specifics.

Torrin Wilkins: So you would say that you feel pretty comfortable passing things on through the system? There is an element of knowing where to go next if you have concerns or issues about a certain case.

Dr Anna Negus: Yes, very much so. I have only ever had one case where I was not sure, and I thought there might be possibly some signs of coercion. I talked directly with the consulting practitioner who was helping me. I also spoke with the previous coordinating practitioner because they were a complex person who had seen a doctor already and had turned them down, asking for new providers. I also spoke with the Statewide Care Navigator System, and we had extra consultations. I think we saw the gentleman an extra two or three times on top of the standard three consultations. I then put it to the board of directors. You can take it through each level.

In the end, he decided not to pursue it. The safeguards prevailed. In his case, we could not find any particular evidence of coercion, but there were lots of subtle issues which raised suspicion. We have discussed the case during our specialist group meetings with all providers, and this is the only case of suspected coercion to date in WA. We followed the system, and we found we have lots of different avenues to go down to ask the appropriate questions. So I think if we encourage openness, people are more likely to be able to communicate any concerns. We are then able to make the right decisions as we did in this one instance.

Torrin Wilkins: Another aspect, and I suppose you mentioned it there, is the state-wide care navigator services, which are set up within each state. Could you give me a bit of an outline of the main functions that these services have, how well they function, and also how good they are at guiding patients through the process?

Dr Anna Negus: Well, I think the title of what they do is excellent because it says exactly what they do. They are a fantastic system, and I do not think we could do this job without it. We would be able to do it, but not as well, and I think they are pretty key in making sure that there is continuity and safety. What they do from the very start is involve various groups of doctors, providers, and the community in making them aware of what voluntary assisted dying is. The SWCNs went out into the community and gave providers practical advice, support and personalised education sessions. These education sessions were provided for a variety of health providers such as palliative care, GPs, nurses and community practitioners.  I think that was probably one of the biggest reasons why VAD was implemented successfully in WA. There were lots of channels that people could go through if they were concerned about what we were offering. For example, when we started, there were lots of concerns in the palliative care system that we were just going to go in and knock everyone off, and there were lots of concerns about that. I know that comes up later in your questions as well. But they were key in helping to dissipate fears, talking very openly, and saying, “Look, we are not going to come in and do those things. You tell me how you want it to work, and we will help you make it work in that way.” They helped ensure it was a coordinated and sensitive approach.

Then, after all the instigation of the system, what they do for us and the patients is that they are sent a referral from a patient. A patient might call them up, or a doctor might call them up, or someone might call them up about someone, and they will contact that person, take their details, and do the preliminary questioning to see what they want from the service or if they are capable of choosing it. Then they will put that person onto a provider such as myself and help to make sure that the provider is helping that person through the process promptly. They also do a whole range of other things that I have not listed, but they are pretty essential.

Torrin Wilkins: So it is really interesting, the idea of acting as a bridge when the service was first formed. We often focus more on the patient experience and how the state-wide care navigator service improves this, but far less on how it acts as a bridge between services such as palliative care. Is that outreach ongoing?

Dr Anna Negus: Yes, very much so. Even the other day, whenever I go to see a patient in a care facility, I ask them if they have had a similar experience with another patient, and if they have not, then I ask the care navigator to go to the care facility and to have an education session.

​​Usually, the SWCNs will make an appointment and go to the institution requiring education on Voluntary Assisted Dying, they will listen to concerns and establish what support is needed. They usually offer an hour-long education session for the group. Whether or not the patient decides to go ahead, they try and just make sure everyone is comfortable and that everyone has had a chance to talk about the issues that they have. There are a lot of issues that people have with it, mostly because they do not know how the process works. Once they are familiar with it, they are not as frightened, and it is really about education. They still do that a lot, and it is fabulous. They also talk with the patients families. Whenever a patients family has a problem, I usually put them onto the care navigators, and then they link them up with different service providers such as counselling, mental health services, or grief counselling. They have a huge, wide range of networks, but a lot of what they do is bridging the gap between the doctor, the patient, and the health facilities, linking all of those people together to make sure everybody is on the same side.

Torrin Wilkins: So, in terms of guidance, and I know this links to the last question a bit, for medical professionals and anyone involved in the process, what kind of guidance exists and has there been anything particularly useful or helpful? This could be either regulation or guidance.

Dr Anna Negus: Do you mean that it is available to us now? So, when I am working, what guidance is there?

Torrin Wilkins: Yes, so what can help you through the process as well as the patients themselves?

Dr Anna Negus: So I mean, there are various platforms, but there is the core service. I have talked at length about the state-wide care navigator service. They are the first point of contact because they will often link you up if you have a concern with the VAD board. That is a panel that is doing all the legislative stuff, ensuring safety, making sure that they are checking what we are doing, analysing our data, and ensuring we are submitting our forms promptly, making sure no one is breaching the Act. So there is the board, and they discuss how to make it safer, or if there is an issue, they help with that. If I have an issue, I know that I can speak with them directly, and they are very quick to respond, very helpful, and they will respond very rapidly if you have an issue. Usually, that is the main source of information if you are a bit stuck or if you are worried that your patient does not quite meet the criteria and what you should do in these circumstances.

The other thing, a useful system that we have, which we set up ourselves at the beginning between the providers because it was COVID and everyone was starting to use video conferencing and telehealth all of a sudden, is that when you are trying to set up a service as tricky as this, it is awful not being able to meet up with the other providers and talk about your issues. So we ended up setting up a group, we had regular meetings, and that was useful. It is basically like you would have in a hospital system: you have morning meetings and you talk about patients, you talk about difficult situations, and I think that experience from other providers is probably one of the most helpful resources we have. We try to pool those resources, and then in the past couple of years, we have had an excellent meeting. The VAD Australia New Zealand has been meeting for the last two years. VADANZ raises discussion about changes or suggestions to improve care. They are an excellent resource and further serve to link everyone up with different providers who can help each other.

Torrin Wilkins: There is also the fact that some organisations and charities are very supportive or very opposed to assisted dying, and those settings may include at home, in a hospital, in a hospice, speaking to their GP or with family and friends. How can we ensure people feel comfortable asking for or, if need be, rejecting an assisted death in those kinds of settings?

Dr Anna Negus: I read that question and I thought, I wonder which way around to look at it. So I guess I can answer it from my perspective on my experience, but that is all I can do, really. The first, I think, is education. The more education there is, the less fear there is, and what we have also done, which I think works very well, is separate VAD providers from non-VAD doctors.

It is an opt-in, opt-out system, which means that only doctors who believe that it is the right thing to do or believe in the system have to partake, so you are not forced into it. It would be very difficult to run a system where doctors were compelled to do it as part of their practice, such as for contraceptives, for example. Doctors have to do that even if they object. They have to talk with young females about it, but I do not think that should be the case necessarily for this. I think what helps is that it is very much separate. So doctors do not have to opt in, and they can immediately say to a patient who approaches them, “I am a conscientious objector, but I can put you on to someone else; here is the number.” I think that is the first way to help distance the person who objects from the patient and not make either party feel bad about their opinions. It immediately neutralises that situation.

I think education for everybody involved is probably the thing that improves awareness. It is like with anything in life; whenever a new controversial thing appears in the community, there is always fear of what that means. When you legalise cannabis, for example, immediately there is huge fear, but soon people realise that it is done in a very safe and controlled way, and because of education, it is less frightening. I think it is the same when it comes to voluntary assisted dying.

Torrin Wilkins: Another issue around that is liability for doctors and anyone involved in the process. So, what level of responsibility do people have, and how is that liability managed?

Dr Anna Negus: Well, in Australia, it is managed in two ways. The first is that the legislation states that as long as the providers act within the law, but as long as they do not breach the criteria of the act, they do not breach the waiting periods or fudge the data or anything else. As long as they do that, then legislation states that as long as the providers act within the law and do not breach the criteria of the act, such as the waiting periods or data entry, then they are not criminally culpable. But it also states that if you do breach the Act, then you are criminally responsible, so that is pretty serious for providers. But we are generally reassured by the fact that it forces us, which is a good thing, and not that I would ever breach it in any way because I would feel too guilty, but it does cause practitioners to stay within those guidelines because if they do not, then they are not legally covered by the government legal system.

But the second is that all of us have to have registration, so medical registration with the Australian Medical Council, and as part of that, we have to have medical indemnity. Whenever we have all spoken with our medical indemnity providers, they say they will cover us provided we act within the regulations. That is good of them because none of us are working in our specialist area. I am not allowed to practise outside of the hospital because I am an anaesthetist, so of course, you would not want to anaesthetise anyone outside of the hospital. I thought that would be counter to my medical indemnity, but they said, “No, it is fine as long as you are acting under your registration within the law; it is all good.”

Torrin Wilkins: So in terms of medical professionals being able to discuss the option of an assisted death, are they able to discuss that openly, and do they also need to discuss alternatives, so palliative care, for instance?

Dr Anna Negus: So my understanding is that now we are allowed to bring up the subject if the patient is heading in that direction. So if they are saying enough things that make us think that they want an assisted death, such as “Can you help me die?” or “Are there not other ways that I can go quicker?”—something like that—then we are allowed to tell them, “Well yes, there is voluntary assisted dying,” and explain it to them. But I think part of my routine consultation with patients is that patients laugh at me every day I speak to them because I say, “You do not have to go through this; this is an option, not a necessity.” We always talk to them about continuing with their palliative care because this is not a substitute for good palliative care, and I would say an overwhelming majority of my patients receive palliative care right up until they die, whether or not they receive voluntary assisted dying as well. We actively encourage them to pursue that and to continue their treatments. If those treatments are helping them and making them feel better, then they should certainly continue with those. Four years ago, when I started doing this, there was a lot of confusion among specialists about whether they could continue helping that patient if they were going down the voluntary assisted dying line. Sometimes I wrote letters, and I still write letters to GPs to say, “Thank you very much for your care; we are very grateful for you looking after them ongoing, and we recommend continued palliative care, continued treatment, and to continue what you are doing. This is very much a sideline and very separate from your medical care.” We are not caring for them medically; we are providing them a service. So it is very different from your normal medical day-to-day interactions, but it is a service that is separate from medical care, and we very much encourage that to continue.

Torrin Wilkins: One concern that I have heard a few times is around rare diseases, such as rare forms of cancer. The concern is that an assisted dying system would reduce the focus on these diseases and that it may either reduce funding or research. Has this become a reality in Australia?

Dr Anna Negus: I cannot see how it would really. I was thinking about that because I have had quite a few people with really quite rare, weird and wonderful cancers, but when people get linked up with me, it is because they are dying. I know that sounds obvious, but they are not well, receiving active treatments and hoping to prolong their lives. They have had all of those treatments, and they have exhausted all of their treatment options. The weird and wonderful cancer people have given them everything they have got, and they are dying. They are usually on a lot of painkillers; they are in hospice, they are at home dying, and they have finished all of their active treatments. So, their dying with voluntary assisted dying does not change anything in terms of their exposure to research, the doctors being able to test them to find out if certain treatments work or do not work. It does not affect any of that because the endpoint is the same. They have died at the same point they would have died, give or take a few days or a few weeks, mostly. Usually, it is not more than a few weeks extra, certainly not for the weird and wonderful cancers.

For neurological conditions, it is slightly different. They do tend to die a bit more in advance of their natural progression. But again, these people have had these neurological conditions for years and years and years. It is not like they suddenly got diagnosed with one and now they are going to voluntary assisted dying. So there is plenty of time for all those research avenues. The other thing that I have had patients do is donate their bodies to science after they have died, because they have something weird and wonderful. Voluntary assisted dying, I know, has helped a couple of patients organise that in advance. So in some sense, it can help them to get organised enough to contribute to advancing science rather than, I think, take anything away from that.

Torrin Wilkins: So, for my final question, another concern that has been raised is the impact on palliative care, and the idea is that the assisted dying system would be almost used as an alternative for what is very much in the UK, a struggling palliative care system. Has this happened in Australia? What impact has the system more generally had on the palliative care system, and how is palliative care viewed more widely?

Dr Anna Negus: Yeah, that is a huge question; it is a huge question, and I am not sure we have enough time to talk about it, but I will try and be brief. In a nutshell, we do not work against palliative care in any way. So I would say all of the patients I have seen this week are looked after extremely well by palliative care, either in the community or in the hospital. I spoke to a gentleman today in a Catholic hospital; we are allowed to do it using video conferencing, and he is receiving excellent palliative care. They are sending him home with palliative care services; he is really happy with the care that he is getting, and by no means is he intending to change that.

Generally speaking, now, because we have shown them, the voluntary assisted dying service has shown them that we are not acting against them; we are really trying to act with them, and we are not trying to polish people off in a really rapid fashion. That is not what people want either, so they just do not want that. They want to live as long as they can in the best quality that they can, and palliative care gives them quality. We do not give them quality; we give them peace of mind, and that is why the two work nicely together. We give them peace of mind. They know that when the palliative care route has finished and there is nothing more than the morphine pump, they do not need to go through that; they can use us. But that is all that we are offering; we are not taking anything away. What we cannot do is say that if a patient is unable to access good palliative care, they will not be forced to look at Voluntary Assisted Dying as their only option to relieve suffering. Reports suggest palliative care is lacking in parts of the UK. VAD is an end-of-life choice, not a substitute for good palliation.

Torrin Wilkins: One part of what I have seen is that within Australian states, palliative care funding often goes up after assisted dying is implemented. So it is an interesting point that a lack of palliative care is a real challenge, but funding has gone up after the implementation of assisted dying.

I think people are often quite worried about the fact that the conversation only goes one way, and it goes towards assisted dying. I am wondering, did it create a wider conversation about the end of life, or was it more focused on the assisted dying system when it came in?

Dr Anna Negus: I think some of it is that all of a sudden it is at the forefront of a persons mind that we are all dying and we need to think about this because there is an awful lot of suffering in dying and everyone is going to die and we are all going to suffer. So we need to do something; I think it affects everybody because we all know that at some point we are going to need those services, and it directly affects everyone. There is no one it is not going to affect. When it comes to my death, I would like to think that I will receive really good palliative care, and I often wonder if I would or would not want voluntary assisted dying. I do not think I really would necessarily want it, but I really think it should be available if you do, which is why I believe so passionately it should be there. I think I would be quite happy on the morphine pump, but that is all good; it is each to their own. But it has got to be there for people who are not happy with that. But I think what it forced the community to do was to say, “we really need to improve the systems that are in place in order to improve the end-of-life process for everybody involved”, and I think that really forced people to invest a little more funding in what is inevitable for everyone. You cannot just push it under the carpet, and I think that there was probably a lot of fear as well about all of a sudden, like you are having in the UK right now, “Oh well if we need voluntary assisted dying all of a sudden, does that mean that our services are not good enough?” and I think it immediately makes people think, actually we need to take a look at this because the services are not good enough, and they probably are not good enough in all countries because it is a massive deal looking after these patients and a huge amount of work and effort, and it is very difficult and challenging. That does not mean to say voluntary assisted dying should remotely be in that place, but I think it makes people think about those two and they put them together and they look at them at the same time.

Torrin Wilkins: That is brilliant, and thank you so much for answering my questions today and for your time.

Note on interview transcripts:

All interviewees gave informed consent for their quotes to be used within the publication and for their interviews to be published separately. They also had the opportunity to review, approve, and suggest edits to the final transcript before publication to ensure clarity. These interviews have also been edited for grammar by the interviewer. This written version of the interview is the final and definitive version.