Ep71: Voluntary Assisted Dying—what have we learned?

Ep71: Voluntary Assisted Dying—what have we learned?
Date:
19 July 2021
Category:

Fellows of the RACP can claim credit for listening to this episode and reading supporting resources via MyCPD.

In 2017, Victoria was the first state in Australia to pass voluntary assisted legislation and has been followed by Western Australia, Tasmania and now South Australia. Aotearoa-New Zealand passed its End-of-life Choice Bill two years ago and that will go live in November. This podcast draws on the experience of some very committed Victorian clinicians who share the lessons they've learned over the last two years about practical implementation of VAD.

The presenters were recorded at this year’s RACP Congress held in May. Palliative care physician Danielle Ko explained how Austin Health has prepared and supported its healthcare staff through this shift in practice. Palliative care Greg Mewett described the challenge of consulting remotely with patients in regional Victoria. Professor Paul Komesaroff reflected on some other points of friction in Victoria’s law as it stands and the practicalities of medical practice. And Professor James Howe talked of his work as a neurologist in a Catholic healthcare institution, and how tensions over assisted dying had been resolved.

Credits

Guests
Dr Danielle Ko FRACGP FAChPM (Clinical Ethics Lead, Austin Health; VAD Review Board, Safercare Victoria)
Dr Greg Mewett FRACGP FAChPM DRCOG (Ballarat Rural Health; Grampians Regional Palliative Care Team)
Professor Paul Komesaroff FRACP (Alfred Hospital; Monash University)
Adjunct Assoc Prof James Howe FRACP (VAD Review Board, Safercare Victoria)
Dr George Laking FRACP (Auckland City Hospital; RACP President Aotearoa New Zealand)

Production
Written and produced by Mic Cavazzini DPhil. Music courtesy of Epidemic Sound includes ‘Like Clockwork’, by Benjamin Kling, ‘September Skies’ by Silver Maple, ‘Mistranslations by Rand Aldo, ‘Elm Lake’ by Elm Lake, Finally B by ‘Twelwe. Image licensed from Getty Images.

Feedback on this episode was kindly provided by physicians of the RACP’s Podcast Editorial Group; Paul Cooper, Rhinnon Mellor and Loryn Einstein.

References

Voluntary Assisted Dying Statement [RACP 2018]
Support for and willingness to be involved in voluntary assisted dying: A multisite, cross-sectional survey study of clinicians in Victoria, Australia [IMJ 2021]

Introducing Voluntary Assisted Dying: Staff Perspectives in an Acute Hospital [Int J Health Policy Manag 2020]
Junior doctors and conscientious objection to voluntary assisted dying: ethical complexity in practice
[J Med Ethics 2021]
Restricting conversations about voluntary assisted dying: implications for clinical practice
[BMJ Support Palliat Care 2020]
Victoria's Voluntary Assisted Dying Act: navigating the section 8 gag clause
[MJA 2020]
Suicide-related materials and voluntary assisted dying
[J Law Med 2020]
Voluntary Assisted Dying report of operations (July to December 2020)
[VIC]
Voluntary Assisted Dying Review Board
[VIC]

Transcript

MIC CAVAZZINI:               Welcome to Pomegranate Health, a podcast about the culture of medicine. I’m Mic Cavazzini for the Royal Australasian College of Physicians. One  story I’ve been meaning to cover since I started working for the College is euthanasia. At the time, the Voluntary Assisted Dying Bill was being hotly debated in Victoria’s Parliament and in the medical profession. At the end of 2017 it became the first such Bill to be passed in Australia, and it finally came into effect in June 2019.

This podcast has become even more timely now, as an Act with the same name has just been implemented in Western Australia. Tasmania and South Australia have recently passed their own versions of the law too,
and there’s a bill before the Queensland Parliament as I speak. In Aotearoa-New Zealand the End-of-life Choice Bill was passed two years ago and will go live in November. Only New South Wales and Australia’s Federal jurisdictions are yet to follow suit. Legislative change was voted down in 2017 and 2018, respectively, but momentum is gathering for another attempt.

Today’s podcast won’t dwell on any minor differences in law, or on the profound moral and spiritual questions that accompany these debates. That has all been covered thoroughly in other forums. The purpose of this story is to see how the Victorian legislation has panned out over the two years of its operation; what do the numbers tell us about the way it’s been applied, and what has the qualitative experience been like for patients and healthcare staff associated with it?

The work was already done for me at the RACP Congress in May, and I’m just going to share with you the frank observations of a few committed clinicians who presented there. I’ve abbreviated what was originally a 90 minute live seminar to make it easier for you to follow in your headphones. The first presenter at the podium was Danielle Ko, a palliative medicine physician at Austin Health, in Melbourne. Austin is one health service that’s really been on the front foot, creating a supportive structure for patients inquiring about voluntary assisted dying and the people looking after them.

DANIELLE KO:                                                                   So I am a palliative care specialist at Austin. I'm also the Clinical Ethics Lead at the hospital. And I am duly also a member of the Voluntary Assisted Dying Review Board but I'm not speaking with that hat on. I'm just speaking with my Austin hat on today. Anyway, in relation to the legislation, there’s strict eligibility criteria; you must be an adult; you must be an Australian citizen or permanent resident; lived in Victoria for over 12 months and have decision making capacity throughout the entire process. And have a disease that is progressive; has a prognosis of less than 6 months or 12 months for neurodegenerative disease and causing suffering to the patient that they find intolerable by other means.

In Victoria we have Section 8 which prohibits practitioners from raising VAD or suggesting it. But once patient has made a clear request then other practitioners can then go on to discuss it. So just in relation to Section 8 which I note that the Western Australian legislation does not have, the Department did put out some guidance regarding what is and is not sufficiently clear. So if you say something like; “I'm tired of life and just want to die, I've had enough of this, can I get it over with?” That is not sufficiently clear. However, the following statements do constitute a clear request for VAD; “I would like you to assist me to die. Can you help me die?”

To be honest, in practical terms, as a palliative care physician, I often hear these phrases and, in practice, we do ask people to try and clarify what they want. And most people who want assisted dying are pretty clear about it and use very clear language anyway. There are three requests; two oral and one written. There are two assessing doctors who have to have undertaken the training, one of whom must be an expert in the disease.

So the patient makes the initial request and when they can find a coordinating practitioner that person will do the first assessment and that is the main practitioner who will be applying for the permit eventually. The consulting practitioner is the secondary one who just does an eligibility assessment. The patient will then have to make the second and final requests, appoint a support person who is responsible for returning any medications should they not use it. Once all the paperwork is in then the permit is applied for and granted and, at the time of the patient’s choosing, the medication is delivered by the Alfred pharmacy service.

In terms of the drugs used, as I said, the medications are dispensed by Alfred hHealth pharmacy where the central VAD pharmacy is located. Only the coordinating practitioner has access to the actual drugs and the dosages, so it’s mainly self-administration. But those patients who cannot digest the medication or swallow are able to ask for a permit for physician administration. And there are complications with more complications with the oral than the IV.

So just at Austin Health, what do we do to prepare for VAD? So Austin Health is a large metropolitan hospital. It has a number of state-wide services including the Spinal Unit, the Victorian Respiratory Support Service that supports a lot of the MND patients and other patients with neurological degenerative disease. We have a Liver Transplant Unit and a large Oncology centre. We did a survey of staff where over 1,000 staff did respond. Overall, they were supportive with Allied Health and nursing staff probably more supportive than the medical. And we also did some free text responses which were very helpful in clarifying what staff’s anticipated challenges and what supports they required.

So, interestingly, in terms of the challenges, both the people who were in favour of VAD and who were opposed and then the whole bunch of people in the middle, there was a lot of worry about the increased conflict. And the pressure to be either involved or not involved against their own values and there were concerns about how VAD and palliative care may be confused by the public and staff.

So, in the end, it was probably in February 2019, so approximately four months before the legislation came in, when Austin decided it would support voluntary assisted dying for their patients. And it’s recognised as a very complex and controversial change in medical practice and that support for the staff was absolutely crucial. So Austin Health was the only health service that appointed a fulltime VAD program manager who gets all the referrals. And the VAD program manager probably spends at least half of their time interacting with patients and families, and then the other half of the time supporting the staff and the clinicians who are trying to do the assessments and provide other support for them.

The philosophy was that we would, as a hospital, provide VAD to the extent there were willing clinicians. And it was absolutely an elective medical procedure and that patient autonomy needs to be weighed against the staff safety and support. So that played out in our policies in a number of areas such as medication storage where medications are stored in the central pharmacy if they are brought in and also when administrations do occur at Austin. So they do occur in business hours Monday to Friday because there's a dedicated nurse who looks after the patient the night before and the morning of. There's social work around them for the treating team, there's pre-briefing and debriefing, so it’s not something that we support to happen after hours because there's just not adequate staff around.

So over the last almost two years now the introduction of VAD has been, actually, extremely smooth and streamlined because we have a central point. The work undertaken prior to June 2019 was essential to really preparing the staff and engaging them in a conversation that saw them feel that their views were heard and then incorporated into policies and procedures. Recognising that there are staff who absolutely are conscientious objectors we have some scripts for people who feel they can't refer on. The referral processes and expert support have been essential. And anecdotally, particularly from junior doctors who have transferred from other hospitals or senior medical staff and nursing staff who work at other hospitals as well, there is less anxiety around this issue.

Significant challenges do exist however. Finding participating doctors is difficult. So we had a really good supported training of our staff in the initial phase, so we had quite a good pool of clinicians to draw from, however, expanding that pool has been very difficult. A lot of people completed the training, and certainly, at Austin, people completed the training even if they weren’t intending to participate because they wanted to gain some more knowledge in this area. The vast majority are GPs with a smattering of specialties. But, as you can imagine with the Victorian legislation, given one person has to be an expert in the disease of the patient, this does place quite a large burden on those specialists.

The assessment process, itself, takes time. The Commonwealth Criminal Code which prohibits one from using a carriage service to move any VAD assessments forward, so that includes telehealth, emails and telephone has meant that our VAD program manager has had to either see the person face-to-face or use Australia Post’s really efficient system. So, as you can imagine, that just adds time to an already complex process. So VAD remains a significant and controversial policy and practice at Austin. I just want to say a lot of people got this program running and it was really a very anxiety provoking planning period but it has settled down and we are really proud of our systems.

GEORGE LAKING:                                                            Thanks so much, Dani . I must say, as an external observer, it’s a slight sense of disbelief. I think I heard you say that the law of the Commonwealth prevents the use of telecommunications to facilitate assisted dying. Well, that sounds like a very Australian thing with two tiers of laws. So that’s, I think, one thing that we won't have in our country.

MIC CAVAZZINI:               That’s the voice of George Laking, a medical oncologist at Auckland City Hospital who was chairing the seminar at Congress. You’ll also hear comments from Greg Mewett and Paul Komesaroff, who I’ll introduce in more detail later.

GEORGE LAKING:                                                            Well, that sounds like a very Australian thing, with two tiers of laws. So that’s, I think, one thing that we won’t have in our country.

DANIELLE KO:                                                                   George, so luckily Western Australia has got around that and dealt with that issue.

GREG MEWETT:                                                               Can I just say, this is an issue close to my heart being in a rural area? Just to give some background, the Criminal Code that pertains to this was brought in when Philip Ruddock was Attorney General in Australia, Federally, in 2005. And this was in response to social media platforms, Philip Nitschke promoting his euthanasia machine, those sort of things. So that the law actually pertains to – that’s what it pertains to because this is well before voluntary assisted dying became law.

So what happens is just as our law was coming into effect – and I was on the implementation taskforce to the Department here in Victoria for the 18 months. Some bright spark came to light and said, “The Criminal Code will actually probably stop you guys from being able to do this by telehealth because you'll be seen to be inciting suicide.” But that’s the current state and the risk-adverse Ministers for Health, understandably, advised us, as practitioners, not to go ahead with that.

I'm here to say that I've already broken that law if that’s in fact the law. I've been told I'll look good in orange one day. But, in fact, by necessity, I've already conducted VAD assessments by telehealth contrary to that. The Criminal Code can be interpreted [like] that as long as the DPP thought it was in the public interest to prosecute someone like myself for conducting those assessments. W.A. and, not out of the woods, Dani. Whatever you say in your state legislation could theoretically, depending on the circumstance, be overridden by the federal law. So it’s a thing. The Feds at the moment are clearly not prepared to change this legislation. So we’re left in that sort of limbo of uncertainty. Maybe it needs a test case.

PAUL KOMESAROFF:                                                     Can I add a comment? Some of us feel that this law doesn’t actually apply to voluntary assisted dying. And we’ve published a paper which some people have thought as being reasonably definitive in the “Journal of Law and Medicine” arguing that the correct interpretation of the Crimes Act Amendment from 2005 is that it doesn’t refer to Voluntary Assisted Dying. And some of that hangs on the nature of voluntary assisted dying of whether, in fact, it does represent a kind of suicide. The Western Australian legislation separates voluntary assisted dying from suicide. We argue that that’s the effect of the Victorian legislation also.

But, in addition to that, it wasn’t the intention of the parliament, it’s not within the spirit of the law to apply it in that way. So there is, I think, a very strong, in fact, compelling argument that the Commonwealth legislation doesn’t apply here. But that hasn’t completely obviated all the concerns and so some people still are uncertain and anxious about it. So there really is a case for some sort of legislative reform. But, as Greg says, this particular government is probably not going to effect that.

MIC CAVAZZINI:               Danielle Ko and her oncologist colleague Associate Professor Andrew Weickhardt presented some data about the use of voluntary assisted dying across the state and at Austin Health specifically. Some of these can be found in Safer Care Victoria’s most recent Voluntary Assisted Dying report of operations.

So in the first 18 months since the law’s enactment, 405 permits were issued for assisted dying and 224 people did proceed to use the prescribed medication. It’s important to note that 60 patients, or 13 percent of applicants, were not successful in obtaining a permit, and there were twice as many patients who were assessed for eligibility by a health service and didn’t end up submitting an application.

As Dr Weickhardt explained, the paperwork is taxing and can take up to three weeks to get approved. He said that for patients with a shorter prognosis it’s better to discuss palliative options that will ease their suffering, rather than raise expectations and anxiety in the final days of life.

77 per cent of applicants for VAD  across the state had a diagnosis of malignant cancer and 14 percent had neurodegenerative disease. The remainder was made up largely of respiratory or cardiology patients. The average age was 71 but there were applicants as young as 20.

Andrew Weickhardt reported that at Austin Health they were averaging about 8 referrals to the VAD team per month, and just under a quarter of all referrals came from consultants. Considerably more referrals came from junior doctors instead, and in 40 percent cases, the first approach by patients had been made to nurses, social workers or other non-medical personnel. This highlights the importance of making training available to all healthcare staff to prepare them for questions about end-of-life options and referral pathways.

Over half of patients who underwent an assisted death through Austin Health did so in their own home and the proportion was much higher across the state. Dr Weickhardt said that those who came into hospital for it tended to be patients with advanced neurological conditions who were unable to administer the medication themselves and required practitioner assistance.

Thirty six percent of all Victorian applications came from regional areas, and according to palliative medicine specialist, Greg Mewett, there is much to be done to adequately support these patients. Dr Mewett practices through Ballarat Rural Health and Grampians Regional Palliative Care Team and gave the following presentation at Congress.

GREG MEWETT:                                                               I’m a palliative care physician in Ballarat. I was on the VAD implementation taskforce prior to the legislation coming into effect. I was formally a GP for many years in Bendigo and had a strong interest in palliative care for all those years. To give a bit of a flavour of what it’s like in the rural and regional areas with regard to voluntary assisted dying; it’s certainly interesting that the doctors involved are not evenly spread across rural Victoria. And we do face those difficulties accessing specialist assessment.

And neurological disorder patients, patients with advanced lung disease, advanced cancers do have trouble travelling. We have a lot of patients who are applying from places far flung like Horsham and Hamilton and beyond who find it difficult to come to Ballarat. As I said before, I've used telehealth on at least two occasions to assess patients and to forward their applications. And, of course, in the time of COVID, this becomes an even more urgent thing to do and a more compelling way of doing that. I would draw the line at doing a full assessment on someone who I thought had cognitive difficulties, I think that’s far better done in person. But I notice there's no ban on people having psychiatric consultants under COVID by telehealth, by the way.

So I just wanted to explain. I've personally been involved with 25 patients who have made it to their first request and then first assessment. Eleven of those patients have died before the completion of the process and herein lies one of the difficulties with voluntary assisted dying. We know it’s a process, we know that people take time to progress through that. People ask me—the longest time from first request to death has been 208 days, so someone really thought long and hard about it, and when things had deteriorated decided to self-administer. The shortest is around 20 days. So we reckon it’s about that time, three to four weeks maybe from first request through to when they self-administer. That’s on my anecdotal figures.

So out of 25, 13 of those patients have gone on to self-administration. I've not personally been involved in a practitioner-administered VAD but I'm, after many years of reflection about this, I'm certainly prepared to do that as part of my commitment to these patients. Thirteen have completed the self-administration with 10 of them in the private homes—maybe it’s different at the Austin—but my experience is most patients want to be at home with the pet, the dog, the wine cellar, whatever they have that’s important to them.

We’ve had two patients die in our Palliative Care Unit; that’s been a little controversial. Not from the nursing staff point of view; 100% of our nursing staff and our 17 permanent senior nursing staff when polled on this prior to these patients, agreed that VAD should be available. Eighty per cent said they'd be prepared to look after a patient if they were to have their VAD either self-administration or practitioner administration within the Palliative Care Unit.

So nurses and other staff aren’t squeamish about it, it’s perhaps more doctors who are more concerned about this. But certainly nurses who spend a lot more time with patients, spend a lot more time with their suffering and their inner thoughts and feelings are certainly not bothered by that. We certainly make adequate allowances for conscientious objection, no one is expected to be involved. We pre-brief and afterwards we allow the staff to talk openly, and that has been a very effective and useful way of dealing with that.

Staff have been very, very grateful and glad that they’ve been able to at least honour their patient’s wishes. And certainly that’s the feedback we get from families which has universally been grateful. I mean we get a lot of grateful comments from palliative care patients, anyway. But for this group of patients, equally so if not more so grateful that we’ve been able to facilitate this.

People often say, “Well, what are these people like?” Because I had my own preconceived ideas of what these people would be like. I thought A, they'd be people who have always felt very strongly about autonomy and their own independence, and they'd be well-educated as they are in many other jurisdictions. Wrong. My patients are from all sorts, all sorts of socioeconomic groups and educational levels. So it’s been quite remarkable to me. What they all have in common is a strong desire to have some control, at least have that option available if the time comes. A few have decided not to go on with it, most of them have decided to use that option when they’ve reached the limits of their suffering. And I think that’s been really educational for me.

All my patients have been well-supported by their family and friends. We all worry about coercion; I've seen patients coerced into continuing chemotherapy against their will. I've seen patients coerced into other forms of surgery against their will. I've not seen, in my experience, anyone coerced into having VAD. The families and friends would rather their friend, loved one didn’t die but they will support them if that’s what they wish. And we also have a strong feeling in our group that this is not suicide. If we conflate voluntary assisted dying with suicide as our society generally recognises it, well then I think we’re way off both ethically and morally.

So I guess that’s my experience from a rural area. There are only four of us doctors trained at Ballarat Health. We’re about to lose one of our oncologists who’s got a job in Melbourne. So we’re going to be down to fairly thin numbers. It’s frustrating but we’re determined to do our best. And we hope that some of the initiatives that have been put forward in terms of allowing group training of doctors —there's one done in Barwon Health recently, another one coming up in Gippsland—this will allow doctors to come together where they often learn best and do the training as we did during the implementation phase. So that will do I think. Thank you very much.

MIC CAVAZZINI:               As you heard from Greg Mewett, participation in Voluntary Assisted Dying is emotionally taxing for staff and it’s essential to provide some form of debriefing with peers and counselling if needed. Assisting patients to die has been a real moral and professional dilemma for some physicians, and this had been raised in RACP surveys even before the Victorian legislation was passed. This consultation process was conducted by the Voluntary Assisted Dying working group, which was made up in large part by the speakers you’re hearing from today.

It was a concern among some palliative medicine specialists that simply having VAD there as an option would cast a shadow over their primary role in maintaining quality of life for the terminally ill. And there remains some misunderstanding as to the status of other practices that occur in routine palliative medicine as well. Patients with advanced neuromuscular degeneration, for example, may become reliant on respirators or feeding tubes to survive. They sometimes express existential despair at such dependence and it has long fallen within the law to withdraw life-supporting therapy from a patient at their request. Even in the moral conventions of most conservative observers, this doesn’t push the button as being a form of murder or suicide.

Another medical support used frequently towards the end-of-life is the subcutaneous infusion device. Also known as syringe drivers, these are typically implanted in very frail patients who need medication around the clock. They might be advanced cancer patients who require repeated doses of analgesia or have poor enteral absorption of nutrients. Sometimes syringe drivers are discussed in hushed tones as it’s imagined that they’re used to deliver lethal doses of medication in jurisdictions that don’t have euthanasia legislation. The panellists at Congress were asked whether the VAD legislation had crystallised any concerns about “inappropriate” use of syringe drivers, whether real or perceived, among lawmakers and physicians. Greg Mewett and Danielle Ko gave the following response.

GREG MEWETT:                                                               I don’t think palliative care physicians would titrate medication. Opioids really aren’t used properly anywhere in the world for euthanasia or assisted dying. In well-established palliative care principles over the last 20, 30 years I don’t see anyone doing that and being accused of that. That’s just not an issue. Most of our patients with a syringe driver—we get to a certain level of medication, they don’t need any increase for the last four, five days, seven days. That’s not anyone’s conception of euthanasia but people confusing what we do in palliative care with a voluntary written legal framework end-of-life death, is just not—it doesn’t happen in my experience.

DANIELLE KO:                                                                   Having said that, I mean even this morning I was looking after a dying patient and starting a syringe driver at an extremely low dose. And you still get the questions, of course, you know, “Are you sure you're not hastening their death right now? Do you think this has contributed to them not responding?” So those conversations are had every day and they were had, though, before voluntary assisted dying. But I don’t think from the legal framework that people are necessarily now viewing our “normal” pall care treatments as— if they didn’t do that before the legislation they haven't done it afterwards, and if they're going to do it then they will.

When I was the palliative care physician walking around Austin Health trying to, I guess, educate the staff about the fact that the legislation was coming in, people would say to me, “Dani , why do you look so anxious? Don’t you do this anyway?” So there certainly is a misconception that voluntary assisted dying was something that we already did. It is a medical treatment aimed at alleviating suffering. It is outside the practice of palliative care but it’s certainly not mutually exclusive. And it is ethically and legally different to what we do in our everyday practice which includes treating symptoms, withholding and withdrawing life sustaining treatment and sometimes continuous palliative sedation.

MIC CAVAZZINI:               The RACP’s voluntary assisted dying working group not only canvassed the opinions of College members but they also scrutinised the literature from jurisdictions overseas where euthanasia legislation existed in some form. They assessed which provisions had worked and what the downstream consequences had been for patient-doctor interactions in those countries. These were distilled into the 2018 Statement on Voluntary Assisted Dying.

Paul Komesaroff explained that it’s far from a consensus statement or a position statement, in that it doesn’t seek to advance a particular stance. It simply summarises the main ethical principles that physicians should consider before taking an informed position of their own, or indeed judging that of another individual.

I’ll quote a few lines from the document to give you a sense of this; “The RACP takes the following unified positions if and where voluntary assisted dying is legalised:

  • Every patient should have access to timely, equitable, good quality end-of-life care, with access to specialist palliative care where appropriate. These services must not be devalued.
  • Although physicians should not be forced to act outside their values and beliefs, they also should not disengage from patients holding different values and beliefs, without ensuring that arrangements for ongoing care are in place.
  • Patients seeking voluntary assisted dying should be made aware of the benefits of palliative care. Referral to specialist palliative care should be strongly recommended but cannot be made mandatory.Voluntary assisted dying must not be seen as part of palliative care.”

Let’s hear some further reflections from Professor Paul Komesaroff, who practices as an endocrinologist at Alfred Hospital, and from Monash University has published volumes on clinical ethics. He’s also the chief investigator on a project examining in a qualitative way the impact that Victoria’s law has had on relationships in healthcare. The results so far have been promising but Professor Komesaroff has identified a few points of friction in the way the Act has been written.

PAUL KOMESAROFF:      As everyone knows, the advent of voluntary assisted dying in Victoria was the result of a prolonged and highly polarised debate that had gone on for some decades. The component of the profession that was most concerned was, of course, the palliative care profession and I think that there was, amongst many people, there was a real sense of alarm and even siege. It’s my impression that some of that has abated and that people have felt that their relationships with their patients have not been undermined or damaged as a result of the operation of voluntary assisted dying. However, that’s not a completely unanimous view and some people have felt that the awareness of voluntary assisted dying as a possibility has in some circumstances, perhaps distorted the conversations that have occurred. Again, this is early and this is subtle. I think this is something we need to watch and wouldn’t apply only to palliative care physicians but to all physicians working in the context of end-of-life care.

Issues relating to consent are always difficult in every area of medicine in which we work. And, in this setting, there's been questions about whether the legal formulations actually capture the complexity of the clinical situation. Clearly it’s related to the concept of decision-making capacity which is defined in the Act in rather simplistic legal terms. You know, there's a set of four criteria, four boxes that need to be ticked; that people understand the information; they retain it; they can weigh it; and they can communicate their decision. So if you look at it from that narrow perspective that’s actually a pretty low bar.

In reality, of course, in clinicians, when they deal with the issue of consent, don’t just tick four boxes but they think of a lot of other issues as well and we need to examine the broader contextual issues including the cognitive status of the person, their emotional status, the cultural variables and so on. One particular issue that’s been of concern amongst many practitioners is the importance or potential influence of depressive symptoms. And here there's been a lot of debate, it’s regarded as a natural and appropriate thing for people at the end-of-life to have lowered affect. On the other hand, there's then the question of whether or not depressive symptoms of one sort or another may affect the cognitive abilities and therefore, decision-making capacity there.

Dani mentioned Section 8, the provision of the Act according to which a treating practitioner cannot initiate a discussion about voluntary assisted dying. Here, too, one can understand what motivated it; there was a concern that perhaps committed practitioners could put pressure on people to embark on voluntary assisted dying course of action. So I think it was well-motivated but I don’t think it’s logical and certainly palliative care physicians have repeatedly said, “It puts us in an impossible position. People say to us, ‘What are the options available?’ and we say, “Well, there's one, two, three and four and there's another one that we’re not allowed to tell you about.” That doesn’t make sense, so that’s an area where the Act will need to be revised.

The last point I'd like to refer to is definitions within the Act. How do you actually establish, as a legal criterion, an expected prognosis of six months or less or 12 months in the case of neurodegenerative diseases? Those of us who are clinicians know very well how difficult that has always been and continues to be. That’s problematic and prognosis has not been included in the other draft laws or actual laws in Australia so it’s not necessary in this way.

And, finally, the definition of suffering and, I'm leaving this until last because it’s actually the most difficult and the one that’s most loaded with ethical and philosophical content. And this is Section 9 Part D of the Act that, “The person must be diagnosed with a disease, illness or medical condition that’s causing suffering to the person that cannot be relieved in a manner that the person considers tolerable.” There had been much emphasis placed on the existence of a small group of patients at the end-of-life with un-relievable physical suffering. But we know now, in fact we’ve known for a long time because it’s also been the case in other jurisdictions around the world, that access to voluntary assisted dying is not overwhelmingly from people with un-relievable physical symptoms, but from existential suffering or emotional or suffering that’s not directly related to physical pain.

Suffering of course is a very complex and difficult thing to define, that is embedded in their lives in terms of their cultural, their ethical and their religious and other ways in which they’ve constructed their experience. And the concept that someone has a problem that they refer to as suffering which is treated in a highly instrumental therapeutic way in the way that it is with pharmaceuticals is, I think, ethically and philosophically problematic. Because the way in which practitioners deal with existential suffering is through establishing a close relationship that guides people, guides families, guides communities through a process of deep reflection. So that’s not something that’s obviously accessible to pharmaceutical, pharmacological medication.

So I'll finish on that point but just to summarise, in broad terms, the Act appears to be working relatively smoothly. There have been some teething issues that are being addressed. And I think they’ve largely been vindicated by the experiences that people have been telling us about or sharing with us from the community more broadly. In terms of the longer term impact and consequences, we’ll just have to wait and see. Thanks for your attention.

MIC CAVAZZINI:               We’ve already heard about a practitioner’s right to conscientious objection; to refrain from participating in voluntary assisted dying if it doesn’t sit with their moral worldview. This is described in section 7 of the Victorian law and is similar to provisions around abortion- with one key difference.

For those who object to conducting an abortion, there is a legal obligation to refer the patient on to another practitioner who can help. However, there is no such requirement in Victoria’s VAD Act and Paul Komesaroff speculates that lawmakers may have imagined such patients to be less vulnerable or under less time-pressure than those with an unwanted pregnancy.

That’s not the case of course, and there are patients in both groups who are less able advocate for themselves than others. Sometimes there are socio-economic reasons and sometimes personal ones. Professor Komesaroff highlighted that more consultation needs to be carried out with minority groups and First Nations people to ensure that they are provided the opportunity for end-of-life conversations in a culturally safe way. In fact that was the theme of one of the very first Pomegranate podcasts from back in 2015.

Religious healthcare institutions may have their own moral objections to medically-assisted euthanasia and in the leadup to the legislation there had been anxiety around the way these would be handled. Professor Komesaroff reported that in the Victorian experience so far there hadn’t been any reports of patients at the end-of-life who were denied treatment options because of this conflict of beliefs.

For an account about managing this kind of professional relationship, we hear from Associate Professor James Howe, who until his recent retirement worked as a neurologist at Calvary Care. Calvary is a Catholic health care organisation that now runs fifteen hospitals across the country. Professor Howe is also a current member of Victoria’s legislative review board for the Voluntary Assisted Dying Act.

JAMES HOWE:                                                                 I just suppose I ought to say that I'm a newly retired neurologist who, for the last 16 years, has been working in the Statewide Progressive Neurological Disease Service. And that’s, de facto, the motor neurone disease clinic for the whole of Victoria. And we also support patients in New South Wales, South Australia and Tasmania. The clinic also has a large Huntington’s disease cohort of patients and patients with other progressive neurological diseases like PSP, MSA and so on.

The situation for us at the Statewide Service is that we provide care and support from soon after diagnosis until death. And since eventually patients with these chronic neurological diseases will no longer be able to visit us at clinic, their last months to a year or so, they’ll be looked after by a local team with us supporting by telehealth and maybe by an occasional visit. And some of the patients, of course, live close enough to our hospital to be looked after by our own palliative care team.

At our motor neurone disease clinic a large proportion of patients are given non-invasive ventilation. Now the situation in Victoria is that the state government will support non-invasive ventilation in the home. The Victorian Respiratory Support Service based at the Austin supervise and provide this and they do joint clinics alongside us at our unit at Bethlehem. And it’s a regular occurrence for patients who are dependent on non-invasive ventilation to ask for it to be removed. And this is done in much the same way as the practitioner administration of voluntary assisted dying is done; after full discussion and education of their nearest and dearest. The patient is put to sleep and then the ventilation gradually wound down and taken off, and the patient’s heart will stop because they don’t breathe. So that seems to me to be much the same as voluntary assisted dying in a feeling kind of way even though, ethically and legally, it’s rather different.

And there was a lot of consternation in the motor neurone disease ward as to what would happen to these patients because we were based in a catholic institution, and I've been asked to say a few words about that. Well, following deliberations by Catholic Health Australia, Calvary Health Care Australia helped our palliative care service to redo their information booklet about end-of-life care and include reasons and explanation and reasons why Catholic Health would not be involved in voluntary assisted dying. But state it clearly and it has continued to carry out support for patients whatever they choose to do. And so our staff continue to support patients no matter what they choose to do even though our staff are not involved in the voluntary assisted dying process and it doesn’t take place in our building. And the neurologists are happy to provide prognosis letters to the patient about their illness on request which they can use as part of their application. So there have been no major hiccups just because we happen to be in a catholic institution.

I'm also a member, as you’ve heard, of the Voluntary Assisted Dying Review Board. And, from that point of view, there are a gradually increasing number of patients with progressive neurological disease who have applied and gone through the process. And the problem for them has been a lack of neurologists who've done the training and who are prepared to do the assessments. One of the discussions that’s gone on at the Board is what constitutes an expert in a particular disease and for patients who have a prognosis of more than six months but less than 12, which makes them acceptable for voluntary assisted dying, a third expert opinion is required. And the Chief Medical Officer has occasionally been asked to rule on whether someone is an expert in that particular disease. And my observation on the Board, reviewing the applications is that a number of general physicians and geriatricians have given expert reports on progressive neurological disease in comprehensive detail which are better than many other reports that we’ve seen. So I'm of the view that you don’t have to be a neurologist to be classified as an expert for prognosis in progressive neurological disease. But that’s one that has yet to be settled.

So the experience so far in Victoria is that patients with progressive neurological disease are accessing receiving voluntary assisted dying in Victoria despite the difficulty over telehealth and the tyranny of distance. And I've always been interested in the fact that we’re not allowed to talk about or bring up VAD with the patients, because it’s been my experience over nearly 40 years of looking after neurology patients—certainly patients with motor neurone disease, are only too ready to bring up what they call euthanasia, and engage you in a philosophical discussion as to why it ought to be legalised. Once people living with one of these chronic neurological diseases have come to terms with the length of time they might have, they want to talk about the existential stuff, and generally expect time to be made in a clinical interview to do that, after they’ve got the symptoms out of the way. So it’s not a surprise to me when someone brings that up, and it’s a way in to talking about hopes and fears for end-of-life and what we can do for people and how things might go. And I hope that over the length of my career I've been able to indulge them in that way.

MIC CAVAZZINI:                                                              That was James Howe ending this episode of Pomegranate Health. I want to thank him along with Danielle Ko, Greg Mewett, Paul Komesaroff, George Laking and Andrew Weickhardt for allowing me to repurpose their seminar. I think their considered message will be comforting for the rest of us in Australia or Aotearoa-New Zealand who can learn from their experience.

The views expressed here were their own, but you can find the College’s 2018 Statement on Voluntary Assisted Dying at our website, racp.edu.au/podcast/ then follow the links to this episode. I’ll put a transcript and other pieces of useful writing and research up there too. And you’ll find composer credits for all the pieces of music you heard, which were licenced from Epidemic Sound. The RACP Events team who did a massive job putting together this year’s half live half virtual Congress also deserve a to be thanked.

If you’ve got any feedback at all, or any themes you’d like to hear me cover in future podcasts, don’t hesitate to write an email to podcast@racp.edu.au. It’s also really helpful if you leave a podcast review at iTunes as it helps other people find the show. Thanks so much for listening. I’m Mic Cavazzini.

 

 

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23 Oct 2021

Carol McAllum

Very well presented by Mic Cavazzini - your thoughtfulness and genuine interest shines through! Thank you! Helpful to have the transcripts as there was a significant amount of quantitative information available. As my natural inclination is that I don't think I can ever administer a fatal dose of drugs, and I feel it is counter to natural processes by which we appear in life - I was interested to hear of the experiences and views of colleagues who do avail assisted dying. In the words of a close colleague - this is about 'pro choice'. I was impressed by the experience of the absence of coercion, and also by the default to provide palliative care if the process of documentation was likely to exceed the natural life span of the individual. I note the differences in legislation, and the likely need for 'case law' to inform actions in future. I felt the presenters spoke authentically and I surmise they have had personal and professional challenges which they have dealt with, to be able to speak as they did. I'm very pleased to have listened. It was easy. I admit to googling Austin Health and each of the speakers during the podcast. I also appreciated being able to stop it and re-play some of it at times. Thank you!

03 Sep 2021

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