Interviewer: Torrin Wilkins

Interviewee: Pauline McGrath

Torrin Wilkins: My name is Torrin Wilkins, the Director of Centre Think Tank. And today I am joined by Pauline McGrath. We will be discussing her experience of the assisted dying system within Australia and her husband, David, who used assisted dying in 2023. Her husband, David Levitt, was the Director of General Paediatrics and Dermatology and Director of Paediatric Education at the Queensland Childrens Hospital. He also spent many years as the sole paediatrician at the Mater Refugee Complex Care Clinic, where he cared for outpatients and children transferred from the Republic of Nauru. After his death, he was awarded the 2023 Childrens Health Queensland Medal of Distinction. So thank you so much for joining me today, Pauline.

Pauline McGrath: Thanks for having me, Torrin.

Torrin Wilkins: So, for my first question, when David was diagnosed with a brain tumour, what factors and considerations went into David deciding that he would like to access an assisted death? And I know one of the things that you have mentioned before was this idea of wanting to die at home and being surrounded by his family.

Pauline McGrath: Yeah, it was, Torrin, the day he found out he had a brain tumour. I remember it well. It was a Thursday afternoon. I had come home from work. And he was very unexpectedly home because he had never been home before me from work. And when I walked in the door, he said to me, he came out of our bedroom and he said to me, “I have a brain tumour and voluntary assisted dying starts on the 1st of January.” So this was in May 2022. And in Queensland, Australia, voluntary assisted dying was being implemented and commencing on the 1st of January the following year.

So, in the space of time where he had found out he had a brain tumour, the next most important thing was identifying that he could access voluntary assisted dying. So in fact, right from the beginning of Davids diagnosis, that was front and centre of his care. And part of that, there were some really important parts in that. So David very keenly wanted to die at home.

We had both worked in health all our lives, you know, so we have had combined probably 80 years of experience in the healthcare setting. we have seen what dying can look like in hospitals and we have seen bad deaths and voluntary assisted dying allowed him to have some control over that process and it meant that he could just comfortably stay at home surrounded by, we have two daughters, two young adults and their partners and he could just comfortably stay at home in our bed and at a point when he felt, if he ever felt he was ready, he could use voluntary assisted dying.

So in fact it was an incredibly important thing because when you get diagnosed with a terminal illness, you know, he certainly was very fearful of what the end would look like and this allowed him, you know, a huge degree on a journey that he could not take himself off of in any way, shape or form, an enormous degree of comfort to know that he had this choice in the background. Whether he chose whether once it was in place, whether he chose to go down that path, he remained totally in control of that decision. But knowing it was there made the day of that diagnosis easier.

Torrin Wilkins: And were there any sort of, you said almost about control and that ability to have control over timing? So was that a really important factor for him, that ability to say, you know, I have control over when and where and how? What sort of difference did that make compared to if he did not have that option there?

Pauline McGrath: Yeah, I think fear and terror would have been the predominant emotions that he might have been experiencing then. When you have such a limited amount of time left in your life, the fact that the biggest emotions that you might be dealing with then are fear and terror is a terrible way to spend the rest of your life, what little time of it is left. What it allowed him to do was be released from those emotions and to put energy, whatever he had left, into experiencing joy, trying to have experiences that he might, you know, the experiences that he could while he could, because he was not overwhelmed with his demise. He could turn his mind to other things. And so it was something that gave him back what little life he had left in reality. So he could turn his mind to enjoyment again and to feeling joy and to experiencing, you know, all of the things that are left and that are important for people, because he was unburdened from what happens next.

Torrin Wilkins: And as you and David were going through the process, how much support and advice did you receive from the statewide care navigator service and the statewide pharmacy service? You know, I have heard a huge amount about those, you know, along this process of finding out about what they do and all of the services that they offer. So I know there are often too many to sort of mention, but are there any sort of specific resources or any questions they help to answer in particular that kind of stand out from them?

Pauline McGrath: I have to say they are some of the most brilliant people working in healthcare because their level of compassion is beyond bounds. Once we hit the 1st of January, I made a telephone call to the team. There is a hotline that you can call. And they were completely responsive right from the get-go. Part of the challenge is having worked in health for a long time, and part of the challenge is accessing services, which can be challenging. And at no point in time along this journey were there any barriers to accessing those services.

So the first telephone call that happened, which I made because David had had, after his diagnosis, was just to extend his life for as long as possible. Our eldest daughter had recently got engaged, so he wanted to be around for her wedding. It was the only wedding of his daughters he was ever going to get to see. He had surgery to resect his tumour, and then he had chemo and radiotherapy. The following effect of that was that it impacted his communication. And whilst his communication was still very clear, under pressure, he would have word-finding problems. So if he was in an environment where he had a requirement to speak, he would struggle to find the right words that he wanted to use. And he was a highly articulate man prior to that. And so that was an enormously frustrating set of circumstances for him. So I rang the VAD team, and they were very open to the communication. And the first question they asked me was, “Why was I calling and not David?” And what was his underlying diagnosis that was leading him to inquire about that? And when I said he had a glioblastoma multiforme, they were just aware that this was a terminal diagnosis right from the beginning.

The moment the neurosurgeon said to us, “This is a late-stage GBM,” we both sitting in an office knew that he had a limited lifetime left. So at every point in time, they were accessible, they were kind, and they were compassionate. One of the great things about the service that we were able to access was that they came to our home. And so that meant for somebody who is doing a lot of medical appointments at the end of their life, which is very common for people at the end of their life, we did not have to navigate finding, you know, driving to a hospital, finding another department, getting ourselves somewhere, and they actually came to our home. So there was this incredible safety for us as a couple.

We did not have to walk into a department that had a big title on the top of it that said, “voluntary assisted dying,” which is how we refer to it in Queensland. And there were just at every stage, checks and balances along the way. So they came to our home, and they sat and chatted with us to start with. There is an involved process which is looking at the checks and balances to ensure that people are not being coerced into using voluntary assisted dying against their will.

And I think it would be having both worked in an environment. I am a genetic counsellor and I work in the area of fetal medicine, which has been my area of expertise. So we are often dealing with the issues that people are concerned about at the other end. So pregnant women who might have a fetal abnormality who are considering termination of pregnancy are considering the laws that we have around that. Again, when they were being debated and legislated for, were those discussions about what if women are coerced into having a termination of pregnancy when they do not want to? But, believe it or not, we have very skilled healthcare workers who are very attuned to picking up on issues around coercion and control and concern. And the same is true for the VAD team.

You know, they are a very skilled set of clinicians who are used to looking at relationships between people, getting a feel for what is happening, checking in and checking with all concerned about whether this is a coercive situation or not. I do not know how you would get through by being coerced because the checks and balances are so significant along the way.

So the first request that I did by telephone was accepted, and that meant that a practitioner came out to our home, and we went through the first request process and Davids first assessment. And once that actually had happened, there was then a second check and balance. So we had made a first request, and then there was a second request where a different practitioner came out to our home again to sit down and have a chat with both of us. I was nominated as Davids support person, you know, because through the process, you nominate a support person to walk alongside you, and that was me. And then those checks and balances happened again with a second practitioner. And in all of this, you know, there were two doctors, but there was also a clinical nurse consultant involved in this. Once you have been through that, there is then a third request which is made by the individual seeking voluntary assisted dying. And then again, it goes to a board to make a decision about whether all requirements have been met for voluntary assisted dying.

So at every step along the way, there is an opportunity for practitioners to meet and discuss this and get a sense of whether this is actually what the person wants. Does that person have capacity? And capacity is a big issue because if you lose capacity in that process at all, then voluntary assisted dying is no longer an option. And then it goes to a board where they have the opportunity to discuss that. So there are opportunities along the way for us, and there are opportunities along the way for the practitioners involved as part of your healthcare team to discuss amongst themselves whether there are any concerns about whether this is appropriate, whether it meets the strict requirements around it, and whether this can be approved. And we had access through all of that.

I knew what was happening along the way at every step. And if at any point in time I had a question about it, I had a very accessible team to call and a very responsive team.

Torrin Wilkins: And it sounds like it is almost difficult for someone who completely wants to do it and is completely saying, you know, I would like this, this is my exact reason, let alone someone who was not sure about it, let alone someone who did not want to. Sounds like there are so many layers of safeguards in there, and so many people that you meet. Would that be right, that it is sort of this layer of, it is a layer cake of safeguards, almost?

Pauline McGrath: Yeah. There are many safeguards among these. And so part of that is that a service needs to be well supported and funded to be able to offer this well to people. So when you are looking at legislation around this, part of what is important is support for the service to be able to do this. And there is absolutely layer upon layer. It is not onerous as a patient at all because it was an opportunity for us to get to know the team as well. So it was a symbiotic relationship. They were assessing us and by the same token, they were supporting us as well, and it gave us, you know, opportunities to discuss what was important for David at the end of his life. What did this look like? What was his vision of that? How would he like to see it play out? Which was helpful for me as the person, you know, right next to him, alongside him, to understand what he wanted as well.

So, the fastest in Queensland, unless there are exceptional circumstances, you can access voluntary assisted dying in nine days. That would be fairly extraordinary circumstances. We started the process in January and in January 2023, and it was finished by sometime in February 2023. And there were pharmacists involved in that as well. So we met the pharmacy team who came to our home. And David did self-administer voluntary assisted dying, which meant that ultimately, once everything was said and done, we had the substance that he was going to use in a locked box in our home. And he could then choose to use that at any point in time that he wished to if he got to that point.

Torrin Wilkins: And so during the process, what level of control did David have? So did you feel like he was in full control? And how easy would it have been to end the process, to pause it, or to raise any concerns that you may have had?

Pauline McGrath: Yeah, so he could have paused it at any point in time that he wanted to. He felt in absolutely full control of the process. Because he was diagnosed in the May before, he could not actually sign up for voluntary assisted dying. He had seven months before he could actually sign up for that. The moment that he had spoken to this team and got access to them and started the process, there was a level of calmness for him because he knew everything was then underway, and he had this option available to him. So his demeanour was much more settled once he knew that this was in place. And he wanted the moment we hit the 1st of January, he really wanted the process to commence.

So it was available for him. But he could have withdrawn from that at any stage in the process. And certainly, at no point did I ever feel that the team that we worked with put pressure on him, had an agenda of any description. I never felt they were trying to meet numbers or anything like that. And he just at every single point in time had control over it. And we as a family had had a lot of discussions around that.

I recognise our eldest daughter is a registered nurse as well. And her area of speciality, believe it or not, is neurosurgical nursing. So she was caring for children. She worked in the same hospital where David worked. So did a lot of care for children at the end of life, brain tumours and things like that. So she had a lot of insight into what this looked like. So, there was always a lot of discussion about what this looked like in the early days. At what point did David think he would use this?

One of the big questions he had for the team, which was interesting because our legislation is written that you have to have a disease that will end your life naturally within 12 months and that you have to get to a point where you have unbearable suffering, is the terminology they use. And his question to the VAD team was, What is your definition of unbearable suffering? Is that just pain, or are there other aspects that are assessed as unbearable suffering? And they essentially said unbearable suffering is as it is assessed by you, as the individual. So it might be that you may not be in extreme pain. And certainly for most of Davids life after his diagnosis, he was not in extreme pain other than really the last 48 hours, where I think he had deteriorated quite significantly in terms of comfort. But the definition of it was unbearable suffering is your perception of what that might be, and if that is pain or if that is a deterioration of the quality of your life, and you consider that unbearable, then we consider that unbearable.

Torrin Wilkins: And I know that a lot of people accessing assisted death have often never heard of the system before, which seems unlike yourselves, who had heard of it, or sometimes they have limited knowledge. So what was it like going through that process with someone who had such a large amount of knowledge, and you being a registered nurse previously? What was it like going through that, but understanding, I think, much more than not only your average person would, but I think many people who have already been through the system?

Pauline McGrath: Yeah, so we were in an interesting phase then because I probably knew more about it at that stage than David did, because he was a paediatrician. There are age limits around the use of voluntary assisted dying, so it is not something that is particularly discussed in a paediatric hospital because essentially it is not viable for almost every patient that enters a paediatric hospital.

So it is not an area where they were particularly focused on, whereas I have worked in maternity care within an adult hospital. And so, because this legislation had been developed and the hospital systems were now implementing it, we were receiving a lot of emails about the implementation process. Just by the very nature of where I worked and the fact that they were in the implementation phase, I had done a lot of reading, and I was very aware of the process and what it was up to. So, you know, I always recognise that as healthcare workers, we have advantages over the average person because we understand large hospital systems and how they function very well. And that gives us a distinct advantage over people who may not be aware of this.

And awareness, even in Australia, even though we have voluntary assisted dying available in most states, is still a significant issue about many people not understanding that this is an option for them for end-of-life care. So we were in an advantageous position because of our access to information regarding this.

And this is not a service which gets advertised. There are no big banners on buses saying, you know, “voluntary assisted dying, call this number.” So it is very difficult for teams to be able to provide information to people who are not health literate or do not have ready access to health information at all. So for us, we probably had greater advantages than many understand. But again, because we understand health systems, there was an enormous degree of awareness of how to access support as well.

Even once we met the VAD team, they were very clear about how to access support. So you know, they offered David psychological support throughout the process. They offered me psychological support both through the process and after the process. So they were looking after me after David had died as well. And that, you know, for us, I was very aware of what was accessible and how to access it.

In a couple of states in Australia, there is a gag clause on voluntary assisted dying, which can be distressing for practitioners because if you are a palliative care healthcare worker, for instance, in Victoria, this clause has been legislated to lift this clause now. And I think in South Australia, a healthcare practitioner cannot tell you that this is an option for end-of-life. So, whereas in Queensland, it can be mentioned as an option for end-of-life.

Torrin Wilkins: And one of the things that stood out in your situation to me, and I think one of the main worries that David had, was using assisted dying and receiving palliative care within a faith-based organisation. So, how did that affect his decisions around care and his ability to access assisted dying and palliative care, both at the same time?

Pauline McGrath: Yeah, that was challenging for us, Torrin. So I think faith-based care in Australia, and again, I am less familiar with the systems in the UK, but in Australia, we have some faith-based organisations offering care within our system. Now we live in inner Brisbane, and in Brisbane, you tend to be zoned to particular hospitals for care, depending on where you are living. So I cannot just choose any public hospital to go to in Brisbane because I like their service or that doctor, for instance. I am zoned to certain areas for healthcare.

And so, even though we live in inner-city Brisbane, the biggest hospital near us is the Mater Hospital, which is a Catholic-based hospital. So we were zoned to their palliative care service. And during Davids first appointment with the palliative care physician, he raised the issue of voluntary assisted dying. He asked the palliative care physician, “What does death by brain tumour look like?” And the palliative care physician went through all that sounds terrible about death by a brain tumour. And David raised the issue of voluntary assisted dying.

The palliative care doctor was very much on the defensive, to begin with, and essentially said to him, “We do not support or offer voluntary assisted dying. This is something that, because we are in a Catholic organisation, we do not offer compassionate care in this environment.” And my point to him was that I was very experienced with that because this hospital also has a big maternity unit. In Foetal Medicine, we are grappling with and trying to manage women who have been abandoned by the hospital because they have a fetal abnormality and are choosing the option of termination of pregnancy. So again, I am very familiar with systems about how to support and assist patients in that environment. And I said to the palliative care doctor that I was not expecting at all that they would support or assist David in the area of voluntary assisted dying. And we were well supported by the next available public hospital to do that. But the big question for us was, we were zoned to that area. David had a brain tumour, so that meant as time went on, he became more unsteady and unstable on his feet. What would happen to David if he, for instance, fell over and injured himself in a way that landed him in the hospital? And if he landed in the Catholic hospital, what were his options to use his voluntary assisted dying?

And essentially, he was told that that is just not for here. So technically, you can use that in our hospital, but we do not want you to; this is something for home, this is not for us. And we really, we do not want to have anything to do with it. And from that moment on, so again, David was dying of a brain tumour, and he had been a doctor who had cared compassionately for people all his life and for people in, you know, dire circumstances.

The work he did in refugee health was just a demonstration of the person that he actually was. And he just disengaged from palliative care right from the get-go. So for the rest of his life, we looked after him without the support of palliative care at all. They never at any point in time thought to themselves, which I was very fascinated by, “This is a person who has a very limited life ahead of them. They have had one appointment with a palliative care doctor. They have not made another appointment for a follow-up”. And at no point in time did they reach out to us and say, “Hey, how are you going? Is there anything that you need?” They disengaged from us. And I think that was because David raised the issue of voluntary assisted dying as much as David disengaged from them.

Towards the end of his life, part of the issue for me was that we had nothing in terms of supportive care for him. So within our local community, I accessed a walking stick, then I accessed a wheeled walker, and then I accessed a wheelchair. All of those services and supportive services that would have been important for David, I had to access elsewhere because he just did not want to engage.

So, if you do not have good communication and palliative care physicians who are open to this as an end-of-life option, then the downside of that is that patients can get even poorer care in relation to palliative care. I think the two very closely walk alongside each other, Torrin, so palliative care should not exist without the option of voluntary assisted dying, and voluntary assisted dying should not exist without the option of good palliative care as well.

Palliative care physicians are often very defensive because some of them may see it as a failure of palliative care if somebody chooses to end their life using voluntary assisted dying. But I think they are symbiotic. They can both be done very well. They both need to be well-funded to do it well. But there can be a point in time where palliative care actually cannot relieve that unbearable suffering, however it is that person perceives their suffering to be unbearable. So, no amount of medication for David would relieve him of the loss of dignity relating to the end of his life. Medication would not have changed that. Support would not have changed that. He just knew that he wanted control over when his life ended.

I had spoken with another team in Brisbane. We have a Buddhist team, so Karuna in home hospice care. And they too do not support voluntary assisted dying. So they do not do paperwork that might be related to the voluntary assisted dying process, but their approach to the care of people who might be considering voluntary assisted dying was worlds apart from the Catholic organisation, which was defensive and had it is hands up about it. The Buddhists were very much, “We cannot do this for you, but we will absolutely support and walk alongside you in this journey towards death.” And I just thought, “Gee, if the Catholics could take a leaf out of the Buddhist hymn book, would not the world be a better place?”

Torrin Wilkins: I found it fascinating listening to different peoples experiences of this because in some situations in Australia, I have heard about Catholic hospitals that are very much able to coexist and palliative care institutions that coexist with the assisted dying system, and then other cases like this. Was the primary issue in your situation that there was not really the choice to go anywhere else, that you could not say, “Oh well, I will go to this other palliative care institution, I will go to this other hospital,” because actually, you did not really have the choice to do that?

Pauline McGrath: Yeah, absolutely, there was no choice in it for us, Torrin, which I find incredibly offensive. We are taxpayers who pay our Medicare levies quite naturally out of our pay, which is the system and how it works in Australia. And yet we did not have equal access to care then. Essentially, the Mater Hospital in Brisbane is a private hospital. The government gives them public money to care for public patients; that is the way that the system actually works. And therefore, that removed all choice for us about good supportive palliative care services.

So if you have palliative care services that are not prepared to work hand in hand with voluntary assisted dying, and the Karuna in-home hospice care is a beautiful example of how they do not support it, but they still treat their patients compassionately, then it is to a patients detriment. And what we got in reality was organisation-centred care. So what was most important in front and centre was the organisation, not person-centred care. David was not front and centre of the palliative care. And that is a failure of the Catholic hospital system, who preach compassionate care, exceptional care. I think the motto of the Mater Hospital is exceptional people and exceptional care, and that just was not our experience at all.

Torrin Wilkins: And finally, looking back on all of your experiences, if you could tell politicians or the public in the UK a single thing about assisted dying or the system that you have in Australia, what would it be?

Pauline McGrath: That voluntary assisted dying is a civilised way to die. It is a humane and compassionate option, but it is an option in a toolbox of end-of-life care. And what it did was take the panic away from David. It allowed him to enjoy what little life he had left because he could turn his mind to other things, not just how it was he was going to die.

Torrin Wilkins: Well, thank you so much for taking the time to join me today, Pauline, to discuss all of your experiences.

Pauline McGrath: You are more than welcome, Torrin.

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.