Interviewer: Torrin Wilkins

Interviewee: Dr Clare Fellingham

Torrin Wilkins: My name is Torrin Wilkins, the Director of Centre Think Tank, and I am ​​joined by Dr Clare Fellingham. We will be discussing the system of assisted dying used in Western Australia.

Dr Clare Fellingham was originally born in London. She trained at St Georges Hospital Medical School and then moved to New Zealand and finally to Australia. She is a consultant anaesthetist, holds a clinical diploma in palliative medicine, is studying for a masters in bioethics, and is deputy director of the clinical services at Royal Perth Hospital and led on the introduction of the AD at one of the metropolitan health services in Western Australia.

So, thank you so much for joining me today.

Dr Clare Fellingham: Thanks for having me.

Torrin Wilkins: So, for my first question, any system which provides assisted dying also needs to avoid and detect coercion. So, what measures are used within your system to do this?

Dr Clare Fellingham: Absolutely, very important question and clearly detection of coercion and making sure that people seeking access to assisted dying are doing so voluntarily is fundamental to the safe operation of the law. Really, this begins even before the assessment process in terms of the doctors who are actually allowed to offer this care. So in Western Australia, you already have to be a specialist with at least one year of speciality practice under your belt, or a general practitioner with at least ten years of experience. So you are very used to communicating with patients, to high-level conversations, and you have really been kind of steeped in that experiential learning that comes with just repetitive clinical care. You then also need to do a training package, which is offered by the Department of Health in Western Australia but which was designed by the Queensland University of Technology, who have a health law centre, and they were tasked with developing the training, which is extremely rigorous. It takes over a full day to do the online training package, probably more. And then there is an exam at the end of that training that has a 95 per cent or more pass rate, and you must pass it before you are allowed to offer this care.

But probably most importantly and most relevant, is just the nature of a voluntary assisted dying clinical assessment in itself. It is so in-depth and so all-encompassing that you develop what I consider to be really quite a unique and deep rapport with patients. Typically, during my first contact with a patient, I will be with them for at least one and a half to two hours. And there are very few times in a doctors career when they can afford that much time to spend with people. And you go really deep into a lot of obviously medical information with them, but also really deep into stuff about them. We have to ask them about their background, their upbringing, their schooling, their life experiences, and their childhood. We really get to know these people

And my strong preference, as is much of my colleagues strong preference, is that we actually see people within their own home and invite their loved ones and their relatives, whoever they wish to be a part of the process, to actually be there with them. And so you develop a relationship with these people, which is quite unique and allows you to really, really understand that this request is coming from them; it is quite without parallel in the medical world.

Torrin Wilkins: So if you did have a concern about someone, what would be the process that you would follow in order to raise that? Would it be that it is you who deals with that issue, or is it that you pass it to the VAD board? So, what is the general process that you would follow?

Dr Clare Fellingham: Sure, so if there were any suspicion of coercion and I have been a medical practitioner working in the assisted dying space and assisting patients for nearly four years now. And I can reliably tell you there has only been one instance in my entire career offering this care when I have been concerned that a family were perhaps manipulating or modifying the patients desire for assisted dying. It was so blatantly obvious that it allowed me to first of all say to the family, I am sorry, but I really need to actually just chat with your loved one on their own. And I asked for the family to leave. 

And when I did so I explored more using a range of different questions to explore the kind of understanding of assisted dying and the intentionality of assisted dying, ranging from how you first heard about it? What are your thoughts about it? Do you remember when it was being debated in the news? Did you discuss it with your friends? Have you discussed it with your family? How is your relationship with your family in the context of this request? What do you think would happen to your relationship with your family members if you changed your mind and you were not accessing assisted dying?

I go into a range of in-depth questions with the person. I would then actually talk to the family, potentially on their own, as well, and try to corroborate the two stories. I would often reach out to their general practitioner or other treating specialists. And then if there was any doubt at all, the simple answer is that they would not be able to be found eligible to access assisted dying because of the voluntariness; the V of Voluntary Assisted Dying is that voluntariness. So I would have no problem acting within the remit of the law and saying, I am sorry, I cannot convince myself that you are acting voluntarily, that this is entirely your wish and therefore I am not finding you eligible and you are welcome to find a second opinion, in which case they could seek another assisted dying practitioner.

We could reach out to other specialists, such as psychiatrists or high-level social workers or our geriatrician colleagues who are very used to dealing with complex behavioural and family situations. But honestly, it is so obvious because of the nature of the relationship that you develop with a person; it is actually more about the person themselves. They tend to be so self-assured. They are absolutely hell-bent on persuading you that this is definitely something that they are seeking. And they do so because of what it means to them. Yeah, it is something people, including myself, before we legalised assisted dying here in Australia, were very worried about. But in practice, it is something that extremely rarely happens.

And the other thing to remember is that our laws, which are broadly similar to the laws that are being debated in the UK, only apply to people who are terminally ill and people who are quite close to the end of their lives. So we are not talking about people who have a choice between living and dying. We are talking about people who only have a choice about dying. And it is the manner and the timing of that death that we are talking about. And in that context, it is very unlikely that a family, knowing that their loved ones days are very short anyway, are going to try and coerce them to end their life a couple of weeks or months.

For most people, it works in the other way around. Families are desperately trying to overtly coerce them out of seeking access to assisted dying so they can live just a little bit longer.

Torrin Wilkins: So you said there that you had a change in your perspective on assisted dying from originally being maybe a little bit cautious about the idea of coercion. So, how big was that change? What was that like? Did you go from being really concerned to then working in the system and finding out? What was the point at which you realised that maybe this system is not what I thought it might be?

Dr Clare Fellingham: Absolutely. It was interesting. So it was in the lead-up during the implementation phase of assisted dying as we moved towards the 1st of July, 2021, which was when our law was enacted. And I remember thinking to myself, my goodness, this is an extraordinary burden of responsibility to be the doctor who determines whether a person has the capacity or is acting voluntarily enough to be able to determine when they want their life to end.

And I think it actually was a reflection on me that they will be found eligible to access a substance that will end their life. And that is a big psychological jump to make as a doctor who never thought that I would be helping people to end their lives. But what I very quickly came to realise was that freedom from coercion and capacity are two sides of the same coin, if you like. You have to have mental capacity to know what you want, and you have to know what you want and demonstrate that to show that you are not being coerced. You see what I mean? They are two parts of the same argument. And actually, the capacity for deciding whether or not assisted dying is right for you is no different to the capacity to decide whether or not a line of chemotherapy that an oncologist offers you is right for you or a surgical procedure that a surgeon offers you. In our Western society, we place a great deal of value, rightly so, on patient autonomy and patient decision-making capacity. And the presumption is that a person has capacity until proven otherwise.

And so I very quickly came to realise that, especially, as I said before, with the reinforcement that patients give you about how determined they really are that this is the right decision for them. The fact that they are so self-assured and that the capacity is no different to any other potential treatment with significant side effects that may cause harm or occasion death. And that made me feel a lot more relaxed about it and really value this care.

Torrin Wilkins: So, one quite distinctive aspect of the Australian system is the statewide care navigator services set up within each state. What are the main functions of the services? How well do they function, and how useful are they for the people going through the process?

Dr Clare Fellingham: I can say with my hand on my heart that the Statewide Care Navigator Service is quite possibly the most extraordinary thing that was conceived in relation to assisted dying. They are the absolute linchpin around which the entire state-based service revolves, and without them, I do not think we would be able to offer assisted dying care. They are a government-funded group of healthcare practitioners. In our state, they vary between nurses, social workers, and a couple of allied health practitioners, such as speech therapists, who have actively sought that kind of role. So they are already people who really want to work in this space, and they offer a completely non-judgmental, non-medical-based access at the point of care, information to anyone who is seeking to explore voluntary assisted dying.

So that might be a patient who has been diagnosed with a life-limiting illness, that might be a family member, or that might be a doctor wanting to know more. That could be anyone, and they are basically a centralised repository of the most in-depth information, not just about the legality and the bureaucracy and all the paperwork, but they have got the lived experience because they care for and shepherd people and guide people through the journey and walk with them often all the way up to and including the point of death, if that is what a patient chooses.

They also act as the conduit of information, not just between patients and their service, but between patients and doctors. So they help to put the right doctor together with the right patient based on a whole range of different factors that might include the type of diagnosis, the speed with which the person wants their voluntary assisted journey to unfold. In Western Australia, we have a part-public, part-private system. So there might be a fee-based element to that conversation, but they also help to protect the doctors from what would otherwise have to exist, which would be that their numbers were freely accessible and they would be inundated with phone calls from anyone seeking information.

So they are really, really fundamental to the cohesive operation of assisted dying. And I will strongly recommend that if the UK goes ahead and legalises assisted dying, they adopt a similar model.

Torrin Wilkins: How much and what kind of guidance exists for medical professionals and those involved in the process? So, has any bit of guidance or regulations stood out as particularly useful within the process?

Dr Clare Fellingham: Well, there is a bucketload of information out there on the internet. There are many sources of misinformation and poor information sources, but I can very happily tell you that there is a wealth of evidence-based and significantly factual information available, freely available on the internet. So if anyone in the UK, for instance, wanted to just pop in any search engine, W-A-V-A-D, Department of Health, that will bring you to the Department of Health landing page. There is a wealth of resources on there for medical professionals, for laypeople, for media outlets. And that includes even being able to access the WA Voluntary Assisted Dying Guidelines. So, a huge document that basically explains the process from start to finish.

The care navigators themselves also hold a huge repository of information and can give that out as and when required. And then the Act itself is also a publicly available document. Download the WAVAD Act 2019, and you can read that.

But for me, probably one of the best and most meaningful pieces of information out there is our Joint Select Committee Report on End of Life Choices. It was called My Life, My Choice. It was published towards the end of 2018 based on over 18 months worth of extremely high-level evidence gathering by the Joint Select Committee, the Ministerial Expert Panel tasked with investigating this. It is over 600 pages long and it collates all the information that that extremely high-level group got together and forms the most succinct and impressive document in support of assisted dying laws, and was really pivotal and instrumental in getting our laws passed here.

So yes, bucket loads of information all over the place. And then, of course, at a local health service provider, we call them, like a deanery or a trust or whatever you call it in the UK, we have produced a wealth of health service-specific documentation and guidance for any medical professional seeking access.

And we are also all a very approachable bunch of people. We have a great peer support network and do a lot of education and awareness to demystify and educate both the public and medical professionals on assisted dying.

Torrin Wilkins: So some organisations and charities are either very, very supportive or very, very opposed to assisted dying. And a setting could include a home, a hospital, a hospice, speaking to a GP, family and friends and so forth. So, how can we ensure that people feel comfortable asking for or rejecting an assisted death?

Dr Clare Fellingham: Thank you. Great question and really relevant because even here now, we are nearly four years, as I said, since we enacted our law, and Victoria was 18 months before us. In Australia, all the states now have a law that is operational, and the Australian Capital Territory comes online at the end of this year. And yet still, we do see these very polarising opinions from very supportive to very, very opposed. And we do see patients being actively prohibited from seeking access to assisted dying, or patients being fobbed off, or misinformed, or at worst, being judged and being treated unfairly in the context of the fact that this is a legally available option in their end-of-life care.

And so the best that we can do to help people feel comfortable asking for an assisted death is actually to take a step backwards along the journey and just be much more open about death in general. I think we have forgotten the extraordinary advances of the 20th and 21st century in terms of medical care; we have become rather seduced by everything that we can do. And we do not, as a cohort, doctors and patients, I think, stop and ask ourselves enough, just because we can, does it mean we should? I think we are rather misguided and often led along by medical practitioners that the advances of medicine are essentially limitless and that there is some immortality that is just around the corner. But actually, what we need to do is just get better about talking about death in general. And that does not have to be a depressing or mundane conversation.

Death is the one true certainty of life: that it is going to come to us all. And it is no different really from birth, being one of the great transitional moments of human existence. And if you think about how much we overthink birth and endlessly prepare for it with laminated birth plans and rooms full of stuff that we do not need, and pair antenatal groups and conversations and all this kind of stuff. If we only applied even a tenth of that amount of thinking to death itself, we would all be much more comfortable talking about that. And we would all then be much more comfortable about talking about what that looks like and what that means to us. And when you explore the meaning and the purpose and the personal reasons for having fears or anxieties or for having particular desires in the context of your death, that is when that space to discuss assisted dying really opens up beneficially.

And so talking about death, thinking about sensible things like having a will, writing an advanced health directive, logging that advanced health directive with your general practitioner, with your family members, making sure that people know what you want, and going the extra distance to think of and accept assisted dying as just another option that is available in our end-of-life care spectrum.

As far as I am concerned, voluntary assisted dying and palliative care are branches growing from the same tree. They are one and the same thing in that they are attempting to humanise the end of life through exceptional patient-directed care. I think the more that we can champion the narrative that palliative care and voluntary assisted dying can not just coexist, but are aiming for broadly the same outcome, the better those conversations will be.

Torrin Wilkins: How does Australia deal with liability for those within the process? So, particularly doctors, but also people of all levels. And what level of responsibility do individuals have more widely within that process?

Dr Clare Fellingham: Do you mean liability in terms of legal liability?

Torrin Wilkins: Yes. So, for doctors very specifically, nurses and GPs involved in the process, what level of legal liability do they have?

Dr Clare Fellingham: Okay. So, I mean, the process of voluntary assisted dying is governed by an act, and the act sets out very strict eligibility criteria that patients must fulfil, and very strict criteria, in particular, related to the assessment of patients and then the storage, administration and disposal of the substance.

So anyone working in this space, particularly the doctors who ultimately would have their professional registration, their career or potentially even their livelihoods on the line would be very abreast of those and would always, I mean, I can only speak for my practice, but I do not know anyone who would deliberately flout the law on any of those grounds.

Furthermore, there are penalties contained within the act. If such a thing were to occur, there are quite significant financial penalties, for instance, for misappropriation or storage of the substance. You can be fined, I think it is in the order of about $35,000, and end up with a custodial sentence.

Similarly, for things like falsifying documents or breaking the eligibility criteria. Ultimately, it is a very, very significant criminal offence which could result in jail time and being struck off the medical register. So the liability and the legal framework are there. And then on top of that, as I have mentioned before, you have the seniority of the people involved. The doctors would have to be at least 10 to 12 years out of medical school, typically, to be able to offer this care to patients and specialists in their own right. So they well understand the legal ramifications of healthcare in general.

And then finally, where I work in a public hospital system, I am indemnified both by my hospital to offer this care and then I also have private indemnity insurance in the way that I think the vast majority of doctors do, through a private medical defence organisation that I pay for and who have logged in my scope of what I practise that I offer voluntary assisted dying care.

But to my knowledge, there have not been any legal cases concerning somebody deliberately flouting the law in any regard in Western Australia ever.

Torrin Wilkins: And what level of personal responsibility comes with the system? I have spoken to some other people who said that there is a certain level of almost emotional responsibility when dealing with patients who are often people that they have known for quite a long period, especially with GPs. You find that the people that they are actually talking to and talking about who have had assisted deaths have been their patients for ten years or more, and they have known them for long periods. So what is that level of responsibility on you, as being that part of the system that delivers assisted dying to people that you may well know quite closely?

Dr Clare Fellingham: It is fairly unparalleled in medicine because you develop this incredibly deep relationship with a patient, whether you have actually cared for them long-term or not, or whether you have just met them for the process of offering them assisted dying and walking with them on that journey. And so there is a huge weight of emotional and psychological responsibility, knowing that ultimately you are going to be the person that, if you find them eligible and they complete all the steps of the process, ultimately you are the person that allows them to bring forward the end of their life.

Now, if I felt that that was ever something that was not in keeping with what a person wanted or was somehow harmful or detrimental to them, I could not do it. But actually, assisted dying and offering this care to people is the complete opposite. It is the most life-affirming, meaningful, purposeful, and powerful thing I have ever done in my medical career. Because what you offer people is the chance to be heard, the chance to have all of their anxieties and their fears laid bare and have as many of them dispelled as possible. You have the chance to engage them in the highest level of palliative care, which 95% of our patients are actively engaged in at the same time as assisted dying. And then you get to allow them to have the ultimate relief from their suffering. And not only that, but they get to actually plan that. They get to prepare for that, not just prepare themselves, but prepare their loved ones, their family members. They get to have the conversations to make sure nothing remains unsaid. And they get to actually turn an inevitably sad situation into something that is typically filled with a lot of joy and certainly a significant degree of acceptance, understanding, and peace.

So yes, I take a huge amount of personal responsibility for all of the patients that I meet, and it is very energy-expensive, particularly if you are, as our law permits us here in Western Australia, able to deliver the substance yourself to a patient in the form of an intravenous administration. That is a huge psychological burden. It comes with such a unique sense of relief for that person and an unprecedented level of gratitude for offering them agency in the context of their inevitable death. The ability to allay fear and relieve suffering and anxiety, and ultimately to take control of a disease that has all but consumed them, is the most extraordinary gift.

And so for me, yes, it is a huge responsibility, but the balance of energy expenditure versus gratitude and benefit is in favour of continuing to offer this care.

Torrin Wilkins: Are medical professionals able to discuss the option of assisted death with those who may wish to use the service? And do they also need to discuss alternatives such as palliative care at the same time?

Dr Clare Fellingham: Great question and one everybody should know the answer to. So there are slight nuances between the states in Australia. So in Western Australia, where I work, we are allowed to discuss the option of an assisted death with a patient, provided that you are a medical practitioner, provided that the conversation is in the context of a medical consult and that you do not just talk to them about assisted dying; you talk to them about absolutely everything that exists for them in the end-of-life care spectrum, which includes palliative care, but will include other things such as social support, psychological support, and prioritising their goals of care through careful and thoughtful advanced care planning.

So absolutely, we are fortunate that we can discuss it with our patients because there are a couple of states in Australia, such as Victoria and South Australia, that are hampered by what has become known as the gag clause, which is that doctors are not allowed to bring it up and offer it to patients. And what we find is that rather than that being a safeguard, that is prohibitive to patients being able to seek access to assisted dying care. And it tends to cause more harm than good. And we are delighted that the Victorian government, in their five-year review of assisted dying and how it is working, has decided to take steps to remove the gag clause from the Victorian Act because they found that it was of no benefit and it did cause extra harm.

Having these conversations out there in the open and people being able to freely talk in the way that they would about any other aspect of their end-of-life care is a vital and necessary part of removing the stigma of assisted dying, and incorporating this into what people can know and expect is out there for them.

Torrin Wilkins: So one concern is actually around rare diseases, such as rare forms of cancer. The concern is that an assisted dying system might reduce the focus the funding or research on these kinds of diseases. So has this happened in Australia?

Dr Clare Fellingham: I must admit, I gave this one a little bit of thought, and I cannot see where the concern about that comes from. I mean, assisted dying is something that is available to anyone who is within a short timeframe to death in Western Australia. It is six months for any cause or 12 months if the condition is neurodegenerative. And about 70% of patients who seek access to it do so because they are diagnosed with a form of cancer, and the idea that just by having assisted dying, we turn our back on trying to prevent these diseases is completely counterintuitive. I mean, you could apply the same argument to palliative care. I do not think I have a great answer to this question because it is just such a non-question.

I mean, what we actually find, and if you look at the evidence, there is a lot of evidence that comes out of Belgium and the Netherlands, which have broadly quite different laws from ours and should not be used to interpret the nature of their laws. But nevertheless, simply by having an assisted dying law in place for up to 40 years, as they have in those countries. What we see is that far from palliative care services being underfunded and being cut to be replaced by assisted dying, these services actually grow and palliative care grows both in scope, public acknowledgement, understanding, and in funding.

And I can only anticipate that that will continue in aspects such as this. In other diseases, the funding will continue because the need for people to be cured is still there. I mean, yeah, I genuinely do not have a good answer for that because it is just not a question that makes sense, I am afraid.

Torrin Wilkins: Another concern which has been raised is the impact of assisted dying on palliative care. The idea that assisted dying would be used as a result of a struggling palliative care system. So has this happened in Australia, and what has been the impact of assisted dying more widely on Australian society and, of course, the palliative care system there?

Dr Clare Fellingham: Yeah, so this is probably one of the most common and vocal bits of the oppositional argument that are churned out. That if you fund assisted dying, then it is because people do not have a choice. And quite simply, that is just not true.

So, if we take assisted dying in Western Australia, for instance. So, even prior to the enactment or even the debate around assisted dying, it was recognised that there were deficiencies in the funding, the structure, and the availability of palliative care. The Western Australian government embarked on a 10-year review and assessment of palliative care. And what ended up happening, before assisted dying even being legalised, was that there was almost $100 million committed to improving the quality and access to palliative care in Western Australia.

Once the assisted dying law was debated and then enacted, what became very clear was that the palliative care community, and this includes a significant number of doctors practising within the palliative care realm, do not view assisted dying as part of the palliative care spectrum. And so, VAD has been and continues to be funded completely separately from palliative care. And whilst palliative care spending has grown and increased, VAD spending has remained incredibly static and very, very low.

For instance, up until July of last year, there was no funding for any of the doctors who offered this care. So they either had to do it on their own time, which most people did, or somehow cram it into the other clinical work they do, whether that is in primary care or in their hospital work.

So, I mean, the idea that the funding sources would be stripped is completely null and void in practice. The idea that people would access voluntary assisted dying because they have got no hope or no choice and it does not represent a true choice because they are kind of forced into it because they cannot access palliative care has also been completely disproven, not just in my health service where I work, but within the whole of Western Australia. So our voluntary assisted dying board is bound by the terms of what they do as a group to produce an annual report on the operation of VAD, and that is also a publicly available documen,t and I would strongly urge anyone who is concerned about any of these potential criticisms of assisted dying to read this. Now we have three board reports from each year of operation; they are published in about November each year and what you can clearly see from our board reports which encompass every single person who has access to assisted dying in the whole of Western Australia for the previous year is that over 85% of people who seek access and ultimately go through voluntary assisted dying are also under the care of palliative care. And so it is a resounding disproval of the theory that the palliative care system is struggling because it is not, at least 85% to 95% in my healthcare organisation; some people are actively engaged in palliative care, and VAD co-exists alongside, in rare cases, together.

We have developed a fantastically collaborative relationship with our palliative care specialists in my healthcare organisation, where they are happy to refer patients to us, they are happy to collaborate with us, they are not happy to offer this care themselves to patients, but they do not inhibit patients from accessing it. And that is really, really, really important.

And I guess the broader impact of assisted dying in Australia as a whole is that I think, slowly but surely, we are getting better at acknowledging that we are not infinite beings and that death comes to us all. And that, rather than burying our heads in the sand and being afraid of that, if we all get on the same page and we talk about it and we talk about what matters in that regard, what the end looks like, but also what is important between now and then. It offers an incredible ability to live better. And that might be hard for people to grasp, but I find offering this care, far from being depressing or psychologically damaging, I find it life-affirming.

The people I care for. I owe an immense debt of gratitude because they teach me things about what it means to truly live and not just exist. And so for me, if it were the broad impact on the Australian healthcare system and Australia in general, it would be that it is actually extremely positive.

In championing Assisted Dying we not only offer people the choice in end-of-life care they have overwhelmingly requested, but moreover through deep and meaningful conversation between doctors, patients and their loved ones, we can dispel fear, reduce suffering, bring death and dying out of the shadows, and so allow patients and their families a better quality of life, and quality of death, however, that might occur, because everyone is on the same page and talking about what matters most. Everyone dies; not everyone has to suffer.

On a deeply personal level, through my involvement in this work, I am forever changed and indebted to all the dauntless warriors I’ve cared for over the last 3 and a half years, to whom I owe an immense debt of gratitude for all they’ve taught me about living, loving, and being.

Torrin Wilkins: Well, thank you so much for taking the time to join me today, Clare, to discuss the system of assisted dying used in Western Australia.

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.