Intimacy, rites and nuances: An in-depth discussion of the complexities and considerations in voluntary assisted dying in a UK and Australian context

Abstract

This is a video article. The authors specifically request that it should therefore be viewed as such. There is a transcription available in the article for accessibility purposes. The video approaches the issue of voluntary assisted dying (VAD) through the lens of a moderated discussion. It explores insights into daily operation of a system and how it operates alongside palliative care services in the Australian state of New South Wales. The participants discuss how policy has become situated and covers themes of gender differences in those accessing VAD; coercion; ineligibility; conscientious objection; and the enablement of the ‘urgency’ that can accompany a final decision. It also reflects on the relevance of the wider health and social care systems in place, and their quality, when establishing a right to VAD. This article takes a non-traditional format and does not reach any specific conclusions or recommendations. It does allow for a detailed analysis of intricacies and challenges that few will have considered in their thinking.

All expressed views are authors’ own and not those of their affiliated institution.

Video 1

The video related to this article can be found at: doi:10.1016/j.fhj.2026.100517.

The transcript of the video is included below for accessibility purposes.

Lucy Easthope:

Thank you for joining us. What will follow is a curious, compassionate and exploratory conversation between experts chaired by an external non-medical person, about the impact on the practice of medicine and nursing, palliative medicine and care, end-of-life care and the introduction of voluntary assisted dying (VAD) in New South Wales (NSW), Australia. It’s a chance to see what lessons, what challenges for practice UK clinicians might draw from the experience of our Australian colleagues for the UK picture.

We have opted to use innovative methods, an extended conversation that is made available to review. We are able to provide depth and nuance. This is an equipoised discussion that isn’t taking pro or anti positions about assisted dying, but is carefully exploring the impact of the change in the law, benefits and difficulties alike.

It is designed to explore operational, policy and philosophical angles. In line with Australian legislation in this area it does not discuss methodology or medication.

My name is Dr Lucy Easthope and I am a visiting professor at the Centre for Death and Society, University of Bath, in the UK, that for over two decades has wrestled with difficult decisions around death and dying.

In my practice work, I’m an emergency planner. I work in the aftermath of major incidents. As I’ve said, I stay external and I'm non-medical, but there are two things that particularly drew me to this debate. I’m very used to facilitating challenging, complex conversations over deeply philosophical issues, and the other thing about my life in disaster academia has been just how valuable different types of methodology, such as the use of interviews and ethnographic observations, can be in our understanding of very nuanced areas.

So it’s been a real pleasure to put this conversation together. I’d like to introduce you to my two participants today. Professor Katherine Sleeman is the Laing Galazka chair in palliative care at King’s College London, and an honorary consultant in palliative care at King’s College Hospital.

Dr Tom Osborne is a consultant in palliative medicine who trained in the UK and moved to New South Wales, Australia in 2020. He is now medical director of the palliative care service in the Central Coast of New South Wales, a region just north of Sydney.

Welcome both of you and thank you for being here.

My first question, I’ll put it to both of you, but I will start with Katherine – contextualise for us. Where are we in the UK and specifically, where are we at in the debate around assisted dying?

Katherine Sleeman 3:11

Thank you, Lucy. Lovely to be here. Lovely to be here with Tom too. For added context: Tom and I worked together when Tom was a doctor in the UK, so we go back a long time. So, in the UK, there are several bills at various stages of progress, but the one I know most about is the Terminally Ill Adults Bill, which is the bill that's been put forward by Kim Leadbeater MP. The Bill is currently progressing through parliament and is at committee stage in the House of Lords. So what that means is that the bill has gone through the House of Commons stage, had some changes and passed through the House of Commons, and the House of Commons have sent it to the House of Lords for further consideration, debate, amendment and for a vote. That vote will be at some point in the future and obviously we don’t know what will happen at that point. But I think most clinicians in England and Wales are now thinking that it is very likely that assisted dying is going to become law.

Lucy Easthope 4:25

Same question to Tom.

Tom Osborne 4:28

Okay, so I'm a practising palliative care doctor out here in NSW. I don’t participate in VAD as part of my clinical practice, but I’m speaking about it now from the perspective of someone who has been working and practising in palliative care alongside VAD during its implementation here, which was a little over 2 years ago. And now [working alongside VAD] for 2 years since it’s been implemented.

The law in NSW, the VAD Act, passed parliament in May 2022, but the law enshrined an 18-month lead-in, so it became effective at the end of November 2023. And that [lead-in] was really to give services time to put together processes and protocols for how people would be able to access VAD across the state. NSW was the last of Australia’s six states to legalise VAD, and the laws do differ in different jurisdictions. What I’ll be talking about today is the law in NSW.

The criteria here to be eligible are based on age (over 18); residency (you have to be a citizen or permanent resident of NSW); you have to have a terminal illness with a prognosis of [less than] 6 months, but that’s extended to 12 months for people with neurodegenerative conditions; you have to be suffering intolerably (that is not very specifically defined); you have to have mental capacity throughout all stages of the process; and you have to be acting voluntarily. You can opt here to have self-administration or practitioner administration. Self-administration is oral and practitioner administration is usually intravenous, although some people opt for feeding-tube administration of the oral substance administered by a practitioner.

VAD here happens within the medical system and public hospitals, alongside other aspects of care, so it’s not separated as it is in some other jurisdictions around the world, it’s very much integrated into the public hospital system. Assessments have to be done here by a doctor with a certain level of experience, or a nurse practitioner, which is a senior nurse who has certain additional things within their scope. The process is that you have a first request, then a first assessment, then a consulting assessment by a separate practitioner, a written declaration, final request, then it goes to a state-level board for approval and substance authorisation. So there are a number of stages of the process.

In our local health district, there is a VAD service comprised of a certain amount of medical time, some coordinator nurses and admin staff, which is separate from the palliative care service. I don’t know exactly how that’s working in other local health districts around the state, but our local health district set up its own VAD service to run this, and they recruit willing practitioners from elsewhere in the health system to carry out the assessments. So people from other specialties such as surgery, respiratory, neurology, palliative care will do the assessments and participate on a voluntary basis.

Lucy Easthope 8:39

So, Katherine, are you happy there to come in on the on the main differences?

Katherine Sleeman 8:44

That’s really interesting, and really clear and helpful, Tom. There are several eligibility criteria that sound as though they read straight across, they are very similar to the bill that’s proposed for England and Wales. So, you’ve got to have capacity, you’ve got to be over 18, you’ve got to be a resident in England or Wales. You’ve got to have a clear, settled or informed wish. All of those things sound quite similar. The bill that’s before our parliament also rests on the person being terminally ill, as Tom has described, but ours has a strict 6-month eligibility criterion and doesn’t extend that to 12 months for people with neurological conditions. There have been debates about that, there have been amendments put forward to do that, but so far they have not been accepted.

There are a couple of important differences though. One is that the bill that’s before England and Wales doesn’t require any kind of a suffering component, so the word suffering is not in our bill, it’s not something that needs to be taken into consideration. The other thing that is different is that in our bill, the Leadbeater bill, the substances have to be self-administered. Now, it doesn’t say the route, so they could potentially be administered orally or IV, but there is no facility for doctor administration of those substances. And then the final thing I wanted to pick up on, because I find this very interesting, is Tom’s statement that it happens as part of the healthcare system, it happens as part of medical care system. Our bill says nothing about where this happens, it’s silent about whether this is part of the NHS (the National Health Service) or whether it’s outside that service, which is very interesting. And you know, there are huge clinical implications obviously to the wider system. So it’s something that a lot of people have been trying to clarify, but with not much luck.

Lucy Easthope 10:56

And one of the things that that really strikes me there is how how are practitioners wrestling with that uncertainty of the detail and very understandably… and we have a long history of this in my area, practising emergency management. Details are beaten out later, but how are people? How do you feel? Colleagues are reacting to some of that uncertainty.

Katherine Sleeman 11:27

Well, again, it’s very interesting. This is just my anecdotal experience, I don’t have national level on this: I think there are several, many, colleagues who are not really giving it much thought. It’s happening in the background. But I think there are a lot of colleagues, particularly in palliative care, palliative medicine, who are really struggling with the uncertainty. For example, think about the hospice sector, there were amendments that were put forward to say that hospices could, if they wanted to, opt out of being obliged to provide this, and those amendments were rejected, which has made people in that sector feel as though this might be something that becomes a mandatory thing that hospices have to provide. And it’s similar for care homes. It has made people feel as though this might be something that care homes have to provide in order to have any funding, and I think that has been extremely unsettling and has caused a lot of worry.

Lucy Easthope 12:37

Yeah. And Tom, one of the wonderful things about having you in this discussion is that you know, the English system well... How important is it to look at the context of where health and social care is, and I say this as both an interested party and a patient, you know in Britain at the moment there’s a real sense of a failing health and social care system. Britain went into the pandemic weak, it’s become weaker. Where in the debate do you see the quality of good care coming in and where we’re at? And do you reflect and think ‘was Australia in a better position?’ after the pandemic for health and social care?

Tom Osborne 13:31

I think it’s extremely important that people have access to good alternatives to voluntary assisted dying, and that would include access to specialist palliative care as well as good social care, aged care, care at home, care in the place they want it.

My perception is that is a concern that people in the UK currently have, more than it was discussed in Australia in the lead into its legalisation here. The emphasis here was very much on patients having choices and autonomy to make decisions about the kind about the kind of death that they have. In our [local health district] it is a requirement that people who request VAD are offered a referral to a specialist palliative care service. The legislation in NSW is a little bit less specific in that it says they must be offered palliative care, but it doesn't define that as a specialist service. So, anyone can be offered palliative care as an alternative to VAD, which essentially is defined as a holistic approach, symptom control, psychological, physical, social, spiritual wellbeing all looked at. But they don’t require a specialist service to have seen the person. I think that is something that I would like to have seen, for people to have a right if they’re requesting VAD to see a [palliative care] specialist. But I'm not sure every part of NSW, which is a very large geographical area, has access to specialists easily.

Katherine Sleeman 15:55

Thanks. It’s so interesting, something I’m particularly interested in because so much of the research that I do looks at the quality of care of the dying across the UK. The health secretary has described the NHS as being broken. That’s the state of play in the UK. And within palliative care, the best current estimate is that something like more than 100,000 people die every year across the UK needing palliative care but not getting it, ie they die with an unmet need for palliative care. As a palliative care doctor and as an academic, I know that for some people, palliative care can alleviate the wish for a hastened death. I see it in my clinical practice, and we also know this from research. And it really does worry me that we’re legalising this bill in a context where palliative care is patchy, underfunded and variable for so many people, with stark inequalities in who gets palliative care and who doesn’t.

This is something that is getting a lot of attention. Just in the past few months, we've had the Health and Social Care Committee report on palliative care, the National Audit Office report, the Palliative Care Commission. And all of these have said what we are currently providing to the population of people approaching the end of life is far from good enough. So, yes, it really does worry me that patients might not have a true choice.

One of the things I’m also really interested in, and Tom has mentioned it, is this sort of subtle difference between saying ‘everyone should be offered palliative care (or offered specialist palliative care)’ and ‘everyone should receive at least an assessment’. I was very keen that they amended the bill to say that in England and Wales everyone asking for an assisted death should have a palliative care assessment, just one assessment, because in my experience that one assessment can uncover a lot of hidden problems and suffering that may not have come to the surface, that that may be worked through, may be alleviated: there may be other strategies.

But from the debate last week, it doesn’t look as though that amendment is likely to be made. So, I think that should our bill pass, it’s quite likely to be similar to the one that Tom has described, where people can be offered palliative care, but there's no guaranteed right.

Lucy Easthope 18:24

I see it quite analogous to the debates that we have in disaster management, where people often think that there’s a separate system that will kick in for crisis. There won’t be corridor care or there won’t be failings and bad deaths. There’ll be this sort of separate system, very well resourced and beautiful over here. And I think it’s quite interesting, people’s perceptions of how bad the current state of the NHS is, and also the reason [for AD] must never be that society is no place to be in. You know, I think one of the most overlooked disaster movies is Children of men, where essentially end of life pills are advertised on the television and given out because what is the point of being in this anymore? And that’s something that that struck me as an undercurrent when I, you know, I’m very prolific on social media and people will say to me ‘I cannot see the point’ and we used to call that suicidal ideation in some ways, and now it’s, that’s a very often repeated statement ... in a more kind of political and philosophical context, and I don’t think you can put… I don’t think you can overstate how much I’m seeing this link really with the decline of health and social care.

You’ve touched on something I really wanted to explore with you both today there …which is about control. So one of the things that I’m very interested in is one of the narratives, the nuances that I’m around a lot in my working life that only sees interrupted death, death when very much unexpected in no-notice incidents. I notice how much people emphasise and need to control their end, so if I can come to Tom first and then to Katherine, how much do you feel control pays a plays a part in … not in the coercive sense, we’ll perhaps come to that, but an individual saying I’ve made many other choices in my life, I’ve been in control right up until now. I’ve, you know, I’ve been a business person or I’ve decided when to have children or all those kind of things. Now I want control over this… Talk to me about that angle.

Tom Osborne 20:34

Patients rarely use the word control, but it feels related to that [in the things they talk about]. One of the things that I do and encourage people in my team and my trainees to do when someone asks about VAD, is to unpick with them why they’re asking that and what is driving the request. It’s a very common thing for people to say when asked that question ‘I don't like the idea of being dependent on other people’. Severe pain is sometimes a reason, but it’s not as common as I thought it would be going into it. More common is people being afraid of being totally dependent on other people and the impact that may have on the people they love and their family. And also the impact [that dependence] may have on their choices about where they can be looked after, because sometimes there is not enough care available in their home. If their care needs are expected to exceed what can be managed [at home] by either professionals or their family, then that is not acceptable to them. That fear of being dependent sometimes comes from what’s been told to them, or sometimes from their own personal experience of having looked after their parents or their loved ones in the past, and they know what the dying process looks like from first-hand experience. They know what it’s like to be a carer of someone who dies and they don’t want that for their children or their spouse. So having some control and having the death they want is often something that people talk about, yes.

Lucy Easthope 22:47

It strikes me as a big theme at the moment in the UK debate.

Katherine Sleeman 22:55

Yes, I think that’s right. I agree. In my clinical experience, if people have said things along the lines of wanting for a hastened death, I can’t think of a single example when that has been because of a physical symptom. It has almost always been because of the sorts of things that Tom has just described. And perhaps, they may not have used the words, but I think there is a sense of things being out a bit out of control: a stressful, panicky, worried situation. And, that’s quite understandable, isn’t it? People who have had control through their lives, quite understandably will want to have control of the end of their life. I think the thing that perhaps feels slightly frustrating in the public debate, or actually very frustrating, is that actually there is quite a lot you can control when you’re dying. In fact, in a way, the essence of palliative care is about giving people control, about saying ‘what is the most important thing to you? We will try and facilitate that’. Currently, legally, there is one thing we can’t control, and that’s the day and time of someone’s death. And for some people, I think that that may be the most important thing or a very important thing.

Lucy Easthope 24:18

OK. It’s really chimed with me with some of the maternity advocacy that I’ve seen about embarrassment, lack of dignity. You know that that it interests me and that led me to points of who might be seeking the control more.. was it – did we see greater numbers, for example – of more men going to apply for VAD. We’ve only got 18 months of data, Tom, but your area has produced a number of interesting reports… I think we’ve got 18 months’ data, as I said. But the most recent data is quite interesting that it’s, there’s not a profound gender divide, is there? And how interesting has the data been so far?

Tom Osborne 25:10

The NSW VAD Board publishes an annual report by financial year, which is July to July in NSW. The first report covered 7 months from November 2023 until the end of June 2024, and then we’ve had a whole year report ending July 2025.

[The most recent annual report covering 1 July 2024 – 30 June 2025],¹ has shown a more or less even split, but slightly more males with about a 55:45 split [54.1% male; 45.8% female]. They report on how many people were receiving palliative care at the time of their first [VAD] assessment, and 87.6% were receiving palliative care. That doesn’t mean they were receiving specialist palliative care, it means they were receiving palliative care in some form. They report on the reasons why people were deemed ineligible and how many people were deemed ineligible at the various assessment stages. It was 8.2%, I think, [who were found to be ineligible] at the first assessment. A further 1.9% were ineligible at the second assessment, mostly because people didn’t meet the diagnostic criteria, but sometimes they lacked capacity or sometimes they had capacity at the start of the process and lost it during the process. One of the things that they also report is how many VAD assessments have happened in each local government area.

Our local government area had the highest number in the state, with about 200 assessments in that 12-month report over the year [1 July 2024 – 30 June 2025], which is about 9% of the first requests across the state, and we have about 4.5% of the population. It is useful to get that data for us, because it shows us how we may differ to other areas and we can understand what’s happening in our local area and benchmark ourselves against other places. One of the things that has happened is that it appears that the number of requests is going up over time.

Lucy Easthope 27:55

That's fascinating. Why? What? What would deem somebody ineligible? That’s quite, seems quite an interesting number there.

Tom Osborne 27:56

It may be, for example, that there they didn’t meet the prognostic criteria or the two doctors didn’t agree. They didn’t meet the prognostic criteria because they had longer than 6 months or 12 months. They may have been felt to lack capacity to make that decision, or sometimes there are residency issues, so you’ve got to have been a permanent resident or a citizen, or been living in NSW for at least 3 years I think. There are certain exemptions you can apply for to the Board on the residency criteria.

There are a lot of reasons why people are ineligible, and I think that is one of the things that creates an interaction with palliative care. [For example] when people are approved for VAD or are very determined to be approved for VAD, but then they start to deteriorate before they’ve been approved or they develop a sudden deterioration and lose capacity. There is, sometimes there is a concern within the family or the patient that some of the drugs we may need to use in palliative care to manage symptoms, like morphine or sedatives, will impair their capacity and render them ineligible for VAD. We’ve had to learn over time to communicate with families and patients about that issue, so that we’re not prevented or blocked from managing people’s symptoms appropriately in the event that they do deteriorate during the process or after approval.

Lucy Easthope 29:56

And your previous conversation with you, you’ve suggested that coercion has not been a concern that you’re seeing, but it’s profound concern in the UK debate. So Katherine, if you can kind of come in there on the coercion angle. That that has felt probably one of the most one of the most realistic parts of the opposition to me. I see, people always assume that working in disaster, I see lots of good behaviour. I see lots of bad behaviour. I see lots of, into family fraud. So one of the things that I found very interesting in the debate is almost a sort of pious discussion of good people would never coerce a relative and and when we’re not seeing coercion coming forward as a major concern in the current situation, Australia, what, where are we at in the UK on this issue of coercion?

Katherine Sleeman 30:48

It’s such a difficult one. I think one of the things that’s been quite useful about the debate in the UK is we’ve unpicked what we mean by coercion a bit, which has been important. So, what one might have in one’s mind, hearing the word coercion, is the scheming relative trying to get their hands on the inheritance or the house or whatever. And that sort of coercion – from others – is something we do need to consider, and I’ll come back to that. But we’ve also broadened the debate to consider whether someone can self-coerce. ie I want to do this not because it’s something I want, but because I think it would be better for the people around me, I don’t want to be a burden. I think that that is a really interesting topic and I’d be interested in Tom’s views.

But then there’s a third type of coercion, we might put it under that umbrella, which is the coercion that exists when you are living and dying in a system that can’t give you access to the care that you need to live and die well at that time. That goes back to the big gaps between the number of people who need palliative care and those who get it.

What I would say on the first, which is perhaps the sort of most serious side, is first: you can never be sure 100% that someone isn’t being coerced. How could you? That’s just that’s a fact, I would say. The second thing is, I have seen coercion in clinical practice. Obviously not about having an assisted death, because that’s not law. But not infrequently, I come across patients who say things like ‘I don't really want to go to this care home, but I know it’s going to be easier for everyone else. And, you know, my daughter said it’s just too hard to keep coming round twice a day. So I’m going to do it.’. When the example is going to a care home, red flags are not raised frankly. But I think if you substitute in the words ‘have an assisted death’ for the words ‘go to a care home’, then we would be raising red flags. And I find that very interesting.

Tom Osborne 33:04

I’ll just jump in there, Katherine. In my practice here since VAD was implemented, I’ve not seen any evidence of families pressuring patients to have VAD. In fact, it is almost always something that the patient very strongly wants, and it’s very clear to everybody that it’s very important to them. Sometimes the family disagree and don’t want them to go through with it, and if anything, it’s relatively common to hear family say ‘I wish they didn't want to do it, but I support them’. As you would expect, families are almost inevitably advocating very strongly for what the patient is saying they want. That’s what families almost always do. We have had some cases where the patient has been very clear they don’t want us to tell their relatives that they’re pursuing an assisted death, because they expect that the family will try to talk them out of it. Those cases can be quite tricky because obviously, as palliative care professionals, we try to involve the people close to the sick person in the decisions that we make, and the conversations about planning for their death in the way they want. It can be quite difficult to manage those situations. We have had one case where the family member didn’t know even after the person had died by VAD.

What I see all through my career is that people make decisions all the time in their lives – not just about in their healthcare, but in where they live, what job they take, what pets they decide to keep in the house – all in the best interests of their family and their loved ones. No one considers that ‘coercion’. It can be quite a difficult thing to judge in clinical practice, because of course someone becomes ineligible for VAD if they are being coerced. I think the wording here in NSW is they have to be ‘acting voluntarily and without pressure or duress’. That can come in many forms, can’t it, as the illness itself puts a certain amount of pressure on someone, and they make choices accordingly.

Katherine Sleeman 35:48

I think what you’re saying, Tom, is very wise and makes a lot of sense. But one of the things I think is really important in the context of our debate is that – and it goes back to what Lucy was saying before – this won’t happen in a perfect vacuum.

A lot of the reason for a change in the law in the UK is based on public opinion polls, where 60%, 70%, 75% of people say they support assisted dying.² That is essentially what has driven this entire thing. But if you go back to the same public who say ‘yes, I support that’ and ask them ‘if someone requested an assisted death because they felt that they were a burden. Or, someone requested an assisted death because they couldn’t get the care that they needed, or the care that was available was not acceptable to them, would you still support it?’. The support plummets.² So, the public feel differently about someone requesting an assisted death because they have great pain – I think people can get behind that. But they don’t support people having an assisted death because they feel that they’re a burden or because the system isn’t providing them with the care they need. So while I agree with pretty much everything that you said, there is an interesting context in our debate, which I think is quite relevant.

Lucy Easthope 37:28

And just for time, if I can come in there a little bit, because there’s a couple of things that you’ve drawn out that really fascinate me there. One is that, Tom, I think that the assumption might be that you might make a decision and sign the paperwork and it can be very elective and planned, but actually sometimes you’re finding is it’s much quicker than that, and people, perhaps people and families, might have quite not necessarily elaborate wishes, but wishes for it to be, you know, in a certain room of the place which sort of takes that out of action for other patients… Is it that it ends up happening much quicker than perhaps a patient or a family would perhaps have planned when that opinion poll was done?

Tom Osborne 38:14

We have found in our district that it has often felt quite urgent from the patient’s perspective, and they’ve often wanted the assessments done quite quickly. It has then driven quite a lot of stressors on the team who do that. The [NSW VAD Board Annual Report 2024–5] gave a median time from the first request to death [by VAD] of 20 days. For all the steps [from first request to substance authorisation]: the first request, the first assessment, the consulting assessment, the written declaration, the final request, the board approval and the substance authorisation – the median time for all of that to happen was 11 days. So that shows you how quickly those things are happening and it’s often driven by a very strong wish from the [patient and/or] family. [Before VAD was implemented in NSW], I think we had always thought that it would be much more elective and that things would be done over a longer period of weeks or even months. Of course, those numbers I gave are only medians, so for half of the people it’s less time. There are certain mandatory minimum [approval times within the VAD process], but it does often happen quite quickly. And the assessments are lengthy, time consuming for senior doctors and therefore very costly.

Lucy Easthope 39:54

Does that concern you, Katherine?

Katherine Sleeman 39:58

Yes, it’s a really important practical consideration that I don’t think that we have thought very much about in England and Wales. Tom said at the start that in New South Wales there was this 2-year get ready period. The Bill that’s before our parliament has a 4-year get ready period, and I think in a way the practical side of things is not really being thought about at all.

One of the things I believe really strongly is that whether our patients say they want an assisted death or not, this law will affect everyone who is dying because it will be inserted into the death system that all of our patients are living and dying in. And it will have ripple effects and ramifications on people dying in the ordinary way.

We quite often hear in this country that this is a modest bill, and it will only affect a very small number of people. But actually, that’s not, that’s not correct. It will affect everyone approaching the end of their lives because they will be existing in a system into which this is plonked. And it may affect some of those people in a good way, it may empower them to have the death that they want. But some of those people will be affected in a way that is that is not good.

And if I can very briefly pick up on something we’ve not really touched on much, around inequalities. We know that there are some groups in society who are less likely to get good palliative care.³ Those same groups often don’t really even know what palliative care is, and sometimes the reason they don’t access it is because they think palliative care is about killing them. So it does worry me that legalisation of assisted dying, may make it – paradoxically, perhaps perversely – harder for some groups to access the care they need, rather than easier.

Lucy Easthope 41:58

Yeah, it’s fascinating, isn't it? On the unintended consequences. So in the UK emergency response world, implications for things like medical examination and coroners, such a niche world, I didn’t realise sort of how niche until I went a bit more public with my work. The only time really I find a lot of people find out about the new changes we’ve had to medical examination and the new changes to coronial law are in their worst moments of their lives. And it’s interesting for me in death, in many forms in the UK, these unintended consequences.

So one of the big changes that people will have only probably noticed from advert[ising] that’s on their television is the idea of direct cremation. But what we’re finding is that families don’t understand, necessarily, that that means that some of the rituals aren’t there. They’re left with uncertainties as to whether that was actually their person who was dying, because we don’t see viewing happen anymore. You don’t get a funeral director service. We’re seeing funeral directors leave bodies longer at the mortuary. Because of that, they don’t have the facilities anymore. They’re just going straight to the cremation and we’re seeing more issues with misidentification. So one of the things I’m known for in my emergency management consultancy is the unintended consequences. One of the great ways to be able to explore those is to look internationally for what they’ve already done to fix them, which fascinates me, and my work often veers between strategic and operational. Obviously we’re not going to get into methodology or medication, but one thing that struck me as a similarity, NSW practitioners have to make arrangements for people and you know it might be that somebody is using that, you know, somebody for example asks to use a conservatory to go into and then that’s out of action for the rest of the day. That’s very similar to the disaster management world. We’ve got a group of families who all want to assert, quite rightly, their right to a set of rituals. It can take a lot of toll on a place and on staff. Are there any sort of operational practicalities that you think we need to be thinking about in that 4-year period if the law was to pass?

Tom Osborne 44:12

I would start by saying that I think it’s important for palliative care to have a seat at the table when these decisions are being made. An example from our district was that I think certain people had assumed that elective admissions for VAD would all come to the palliative care ward. We have a palliative care ward in our local hospital, there aren’t independent hospices in our region. I think some people had assumed that all VAD would come to our ward. But we don't admit people just for VAD. We do admit people if they have a specialist palliative care need, and some of them then proceed to have VAD on our ward. So we don’t ban VAD on our ward, but we wouldn’t admit someone if that was the only reason they needed to come into hospital. They would have to have a specialist palliative care need [to be admitted to the palliative care ward] and we were I think right to do that. But then they sometimes get admitted to acute wards which, as we know, are not always the best environment for people to be having end-of-life care in whatever form it may take. One of the things I’ve observed anecdotally about VAD deaths is that you need a lot of physical space. The patients [who die by VAD] are often more alert, they have to have capacity so they’re alert and talking. They want to see 10 or 20 relatives on the day, so people come in large groups to visit, and they’re sometimes awkwardly waiting in the corridors of busy acute medical wards. On the palliative care ward, we have a bit more space, we’re very lucky. The VAD service have told me that they really want their own space. So physical space is really important, having a seat at the table is really important.

As a team of palliative care professionals, one of the things that we did in that run-up period is have a number of safe, confidential discussions as a group of consultants – there are seven consultants in our service – where we all aired our personal views and preferences about it. This was really helpful at the outset. Without judgement and without challenging each other’s views, just learning about how each of us felt about the forthcoming change in the law, so that we didn’t feel that we were tiptoeing round each other or second-guessing what position each of us might have. That was a really important process for us to continue functioning as a healthy team once the legislation happened, because we were able to understand, for example, who was a conscientious objector, who was happy to talk to patients about it, make a referral to the VAD team and so on.

Those are some things that come to mind about preparing at a service level. At a national level, I think it’s really important, Katherine, what you were saying about it being unclear whether it’s going to be inside or outside of the [UK] health system. I think that would really help people to understand how it was going to look. Not just about the physical space – where does it happen? – but also how will it be funded? Is it a separate funding stream from the NHS? Who is going to handle and manage the VAD substances, the drugs used to bring about death? Is that going to be within normal pharmacies or is it all going to be separated out? Those things help people understand how it’s going to work in their practice, in their hospital, in their service.

Katherine Sleeman 48:44

Thank you. There was so much there, but one of the things that Tom said that really struck a chord was that palliative care needs a seat at the table. I completely agree with that. In many ways we’ve got much to offer and contribute, expertise that is highly relevant to this debate. Palliative care professionals are experts at pain control, at existential suffering, complex family dynamics, difficult communication, advance future planning, future care planning. It is absolutely the case that we have a lot of expertise to offer and we should be at the table.

Lucy Easthope 49:26

Yeah. Yes, that’s such – I found myself, in a very non-academic way, getting goosebumps actually at the idea of the visitors and the last visit, and people queuing in the wards, that brings to mind that idea that we see sometimes in the aftermath of disaster with viewing. And 50 relatives will turn up. And Tom, you know, it’s so profound to hear that from you it was that was a really moving moment. And I’m very interested as well in concepts of things like the conscientious objector.

And how that how that plays out for the patient and, you know, I’ve talked about in a lot of my writing, having miscarriages and on one occasion it was written, as it often is, medically as a ‘spontaneous abortion’ and a nurse, a young nurse (one of the other nurses said, oh, she's Catholic) was very, was very hostile to me and that that experience of what it feels like possibly as a patient, you know, and it feels like you’ve managed that very well and there's practical systems built in, but also… As a patient or that doctor can’t treat you, how is this? And I know we’re tight for time, but how is conscientious objection treated? That really interests me in that context.

Tom Osborne 50:45

The law allows for conscientious objection. If someone requests VAD of a doctor who is a conscientious objector, then the law requires you to report that request to the VAD Board, but the law does not require you to make an onward referral to a VAD service in New South Wales. I think, as doctors, we can almost choose to keep ourselves more at arm’s length. For example, if someone is admitted on the palliative care ward under a palliative care specialist and that specialist is a conscientious objector but the patient decides to die by VAD, then there is a facility in our hospital for one of the VAD consultants to take over their care on the day of VAD. Therefore, you’re not directly involved [in VAD administration], and you’re not involved on paper either because it’s not your patient anymore, someone has taken over their care, and the bed card at the end of the bed changes from you to someone else.

With nurses, I feel that it's more difficult. The law in NSW prevents you from withholding standard care, so it is unlawful to withhold standard care from a patient just because they're requesting VAD. As someone dies from VAD, they do need nursing. Someone has to potentially provide them with mouth care, manage their pressure injuries, nurse them in bed, whatever nursing they're requiring. We are lucky in our region that our palliative care unit is seated within a larger hospital, so if we have only two nurses on shift and one of them was a conscientious objector and was therefore not wanting to participate in the care of a patient having VAD, then another nurse could potentially be brought from another ward to facilitate that. I guess that would be a practical consideration in smaller units where there may not be very many staff on shift. It's not something I've seen come up in my service, but it's something we have thought about how to respond to if the situation came up.

Lucy Easthope 53:18

And it’s fascinating, isn’t it? Because I always think, with the major reviews we’ve had here into palliative care scandals and medical device failures in palliative care and other things, there’s no ‘feedback form’ from a patient at end of life. You know, you can’t say actually at the very end, that nurse, that that swap to a nurse from another ward made me feel humiliated. We don’t get to say afterwards ‘how was it?’. That, in end of life [and neonatal], I think is it is very interesting. There’s no patient voice after the process and that always fascinates me, I think here so it’s very reliant on clinicians to be these very intimate auto-ethnographers and think that look of distaste which I saw when somebody assumed I’d had an abortion, I’d had a miscarriage.

It’s so intimate, ethnography, isn’t it? You know that. I can’t put into words how important it is to keep learning from people like you and places like yours. I knew this conversation would be profound, but I’m completely overwhelmed by how powerful it’s ended up being.

So if I come to you first, Tom, and then to Katherine for final reflections and particularly Tom for how you, you know, how you think about your colleagues in this.

Tom Osborne 54:54

My final reflection, is that I think it has been more difficult to separate the practice of palliative care from VAD because they are the same patient group who are eligible for those two services. I would leave the message that self-care is important and it’s very important to look after your team and your colleagues. It can be a very unsettling time. Personally, I found the months leading up to legalisation more unsettling than the months after, when some of the anxieties and unknowns dissolved away. But look after yourselves and your colleagues.

Katherine Sleeman 55:53

Thank you. My final reflections from this conversation are that assisted dying is almost certainly coming in England and Wales. It won’t be perfect, but maybe nothing ever is. And we've just got to keep learning from each other.

Lucy Easthope 56:17

I'm so grateful to you both. When we constructed this, I knew that the conversation would be incredibly powerful. What I hadn’t expected was it to provide a clarity and a context and observations that I simply have not seen anywhere else in the debate.

And I thank you both. It’s incredibly brave and incredibly skilled, what you both did there, and one of the things that I’m so grateful for is, you know, I’m a visiting professor in a Centre for Death and Society, I have a PhD in medicine. I knew none of the things that you told me.

Today you answered questions that I think people all around the world would have on this process. What a life in disaster has taught me is just how grateful I am for clinicians that are able to see what I call in my my writing, two truths. There is no one truth.

There are so many different perspectives and what I seek out in my colleagues is just the compassion, the interest, the curiosity that you’ve both demonstrated today. I wish you only good things and I cannot thank you enough for the effort and time that you’ve put into this today.

OK. Thank you both very much.

Katherine Sleeman 57:39

Thank you, Lucy.

Tom Osborne 57:39

Thank you, Lucy.

CRediT authorship contribution statement

Thomas Osborne: Conceptualization, Methodology, Visualization, Writing – review & editing, Writing – original draft. Katherine Sleeman: Conceptualization, Methodology, Software, Visualization, Writing – original draft, Writing – review & editing. Lucy Easthope: Conceptualization, Methodology, Project administration, Visualization, Writing – original draft, Writing – review & editing.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.