Joint Committee on Assisted Dying debate -
Tuesday, 28 Nov 2023

Assisted Dying in New Zealand and Australia: Discussion

An Cathaoirleach Gníomhach (Deputy Gino Kenny)

Apologies have been received from Deputy David Cullinane.

Parliamentary privilege is considered to apply to the utterances of members participating online in a committee meeting where their participation is from within the parliamentary precincts. There can be no assurances with regard to participation online from outside the parliamentary precincts, and members should be mindful of this when they are contributing. Witnesses participating in this committee session from a jurisdiction outside Ireland should note that their evidence may be subject to the law of that jurisdiction.

This committee discusses dying, including suicide. Support information can be found on the committee's website.

Our agenda this evening is engagement on the topic of assisted dying in New Zealand and Australia. We are very grateful to all the witnesses for accommodating the difference between time zones. The meeting will be broken into two sessions, the first engaging with witnesses from New Zealand, from 7 p.m. to 8.30 p.m., followed by engagement with witnesses from Australia from 8.30 p.m. to 10 p.m. We will start with our first session, and I would like to welcome Mr. David Seymour. Mr. Seymour is the Member of Parliament for Epson in New Zealand. I also welcome Dr. Sinead Donnelly, consultant in internal medicine and specialist in palliative medicine at Wellington Hospital, and Dr. Kristin Good, chief clinical adviser and registrar of assisted dying from the Ministry of Health, New Zealand. I would like to say morena and kia ora to the witnesses, and I thank them for their early morning start to engage with us. Please excuse my pronunciation; I hope I got that right.

The question format for the meeting is that the members will ask questions after all the witnesses have given their opening statements. A member can ask an individual witness a question or address a question more generally to all the witnesses. I ask that all witnesses keep their opening statements to the agreed five minutes. I will hand over to Mr. Seymour.

Mr. David Seymour

First, I thank the committee for hearing from us down here in New Zealand. I hope we can be of some help to the committee's deliberations as it considers a question that New Zealand has considered and resolved in the past five years. I understand that I have been asked to speak because I was the Member of Parliament in New Zealand responsible for the End of Life Choice Act 2019, which made assisted dying legal in New Zealand with effect from November 2021.

It was a five-year project from when I first submitted the Bill to our Members’ ballot until it was selected for debate, passed by Parliament, and confirmed by a referendum of all electors in New Zealand. As a result, I lived this debate as a major commitment of my life for several years. With me is Ms Brooke van Velden, now also a Member of Parliament and a Minister of the New Zealand Government. At that time, she worked in my office and was instrumental in getting the Bill passed.

To quickly summarise the New Zealand law, it allows a person eligible for assisted dying to choose the timing of their death. They can do that either by self-administration, or administration by a medical practitioner. A person eligible for assisted dying is defined as someone who is over 18; a New Zealand citizen or permanent resident; in an advanced state of irreversible decline in physical capability; has a terminal illness likely to end his or her life within six months; is competent to make an informed decision; and judges that there are no other acceptable ways to alleviate his or her suffering.

These conditions are independently judged by two medical practitioners, the second of which is randomly assigned by the Ministry of Health. The law serves as a narrow exemption from a number of provisions in the Crimes Act, that would otherwise see the health practitioners involved liable for aiding and abetting suicide in the case of other clients.

How is it going? Approximately 30,000 people die in New Zealand each year. I imagine, based on population size, that the number is similar in Ireland. In the year to March 2023, the first reporting year for which there is full data, 807 people, around 2.5 % of all who died, applied for assisted dying. Of those, 328 had an assisted death, 111 remained eligible and the remaining 368 had been found ineligible or withdrawn their application. Some 202 died during the process. A total of 122 medical practitioners have registered as either an attending medical practitioner - the first doctor - or an independent medical practitioner - the second doctor. There are also 13 psychiatrists and 13 nurse practitioners who can play a role. In effect, this means there are available staff in most parts of the country. Although I note recent media coverage of 16 complaints about the assisted dying service in the past year, they overwhelmingly related to a lack of availability rather than any kind of malfunction or injustice in the application of the policy. This is a popular policy and complaints come from a lack of availability.

Finally I will make some political observations. I have summarised the law and how it has worked, but I would also like to make some observations that fellow politicians on the panel may recognise. Supporting this legislation will not hurt them politically. Of those who supported my Bill in 2019, 71% were re-elected in 2020. Of those who opposed my Bill, 57% were re-elected. My party rose by 900% from one MP to ten MPs. That may be because, when the issue was put to the public, 65% voted yes. This was in the face of an expensive and disingenuous scare campaign during the referendum which, based on our polling, probably dropped the support from approximately 70% to 65%.

It is difficult to change people’s minds because people know what they have seen in their lives. Too many people in New Zealand, and I suspect in Ireland, have seen bad deaths in their lives. They want choice and control for themselves if and when their time comes and that sentiment is deeply personal and embedded in people's psyche. Nonetheless, members will hear enormous amounts of misinformation about assisted dying in other countries. Generally, the more distant the country the more misinformation will be heard about it from opponents. In New Zealand, we heard the most misinformation about the Netherlands, a country as far away from Zealand as you can physically get, with a different language from ours so it was easy for opponents to spread misinformation about what might be happening in the Netherlands. I am taking the time to submit today, while forming a new Government this week, because I do not want Ireland to be misinformed about the New Zealand story in the same way some people tried to misinform us about other countries during our debate. I will be happy to contradict anything the committee may be about to hear or take any questions it may have.

The opponents, one of whom I understand the committee will hear from today, ran a campaign of fear, uncertainty and doubt against my Bill. I am pleased to say that in the past two or three years, since the people spoke in the referendum and policy has begun to function well for those who want control and choice, we have not heard from them. They cannot be found anywhere in New Zealand these days, nor can their spurious arguments. However, I understand that, having been discredited by hard reality in New Zealand, some of them have now slunk around the world to submit to this committee. I cannot fathom what motivates them, but their behaviour is tragic and they should be ignored. The committee should allow those in Ireland who want choice and control about how and when they go to exercise their bodily autonomy under the rule of law.

I thank the committee for listening to my submission. I look forward to members' questions.

Dr. Kristin Good

Tnā koutou katoa, I am the chief clinical adviser at the Ministry of Health in New Zealand. I also hold the statutory role of Registrar (assisted dying) under the End of Life Choice Act. The Ministry was responsible for the implementation of the End of Life Choice Act and has ongoing responsibility for its regulation and monitoring. I have been involved since the early implementation phase. I thank the committee for the invitation to contribute to this discussion.

Following the referendum that was held at the same time as the 2020 general election, when 65.1% of the voting public voted “Yes”, the Ministry had one year to implement the Act, which came into force on 7 November 2021. The Act provides for strict eligibility criteria; specific eligibility exclusions; a heavy reliance on process; oversight by three statutory committees or roles; and assessments of competence and coercion throughout the process. These offer important protections for people at a highly vulnerable time in their lives. Assisted dying is an emotional and polarising topic. Implementation required sensitivity and consideration, with particular attention to the welfare of vulnerable groups.

I will focus on some of the key aspects of the implementation. First, broad stakeholder engagement was key. The attitude across the various groups varied from excitement, to interest, to concern, to opposition, to the hard-to-manage disengagement. Across the heath sector every group needed to at least decide their position on assisted dying, implement policies to support that position and upskill staff. There was a lot to do to be ready for the first person who raised the topic, so we needed broad engagement and buy-in. We actively included those opposed to the Act and those who represented vulnerable groups, such as disability activists and Maori and included them on our advisory groups receiving invaluable contributions about operationalising the Act and particularly on safeguards and equity considerations.

The second topic I will highlight relates to the workforce. One of our chief concerns was whether we would even have a workforce to deliver the service, because we knew there was low support and high levels of opposition to the Act in medical professions and their professional bodies. We were also aware of high early attrition of assisted dying practitioners in other jurisdictions, often after their first administration of medication. Practitioners were stretched and exhausted by Covid-19. To support the workforce and ensure we had staff to deliver the service from day 1, we delivered interactive webinars, educational sessions, training, resources, and guidance and included practitioners in consultation on key aspects of implementation, including funding. Layers of accessible support were also put in place for assisted dying practitioners from the day the Act came into force.

We also looked at the safeguards. There was concern among the public and health professionals about how safe this was going to be. The safeguards were enhanced to complement those already in the Act. Recently described as a race to be the safest and the toughest, safeguards are essential to keep people and practitioners safe.

There is some element of practitioner intolerance in having to function within the legal constraints of the Act which are actually keeping everyone safe because health practitioners are used to a freedom they normally enjoy and it is being curtailed, for obvious reasons.

Governance and quality assurance systems were established and were vital to building trust and confidence. The third thing was accessible mechanisms for feedback and complaints. As David Seymour, MP, mentioned, the level of complaints is low. This is particularly notable for a new service and one that was under such high levels of scrutiny from day one. The complaints have mainly been about the impact of conscientious objection on people trying to access the service. We commissioned a post-implementation review after one year of service. The feedback was that a robust and trusted service foundation had been developed. The service had operated smoothly and feedback from practitioners, people accessing the service and their families has been overwhelmingly positive. The Act is working well.

Dr. Sinead Donnelly

Mar a dúirt mé cheana féin, is ábhar deacair agus tábhachtach an t-ábhar seo, is é seo, cuidiú le daoine lámh a chur ina mbás féin." I am a palliative medicine physician. I trained and worked in Ireland, the USA and Scotland and am now working in Aotearoa, New Zealand. My views today are informed by my extensive experience of the ability of palliative care to satisfactorily address people’s physical and existential needs and fears at the end of life, without ending their lives prematurely. My starting point is that assisted dying is not part of medicine. Assisted dying sets up a conflict within medicine and for palliative care in particular. We cannot expect doctors to be advocates for life and direct providers of immediate death. Whether offering the option of a premature death, or acceding to a patient’s request for such, doctors’ involvement in the decision sends an existential message that the patient’s life is no longer worth living even if doctors see themselves as a neutral party.

In Aotearoa, New Zealand, 1,800 doctors signed an open letter that doctors should not be included in the practice of assisted dying stating that crossing the line to intentionally assist a person to die would fundamentally weaken the doctor-patient relationship which is based on trust and respect. In New Zealand, where legislation mirrored on Canadian law has been in effect for exactly two years, it is far too early to derive lessons. This is particularly so based on the limited data being gathered despite our discussions with the Ministry of Health advising it to collect data similar to Oregon or Canada.

I now refer to the observations made by palliative medicine physicians in our study of the impact of assisted dying on palliative care practice. Patients are being granted euthanasia on

the basis of their request, and the fact they are likely to die within six months. Feedback from one doctor was as follows: "... there was no attempt as far as I could see from the documentation, to explore why and no sign in those notes of intractable suffering". The practice of palliative care has deteriorated, with less engagement on the tough subject of suffering and its meaning for individual patients which is the core work of palliative care. All of this means that true choice for patients and those who work in palliative care has been reduced. Patients with delirium who are deemed lacking in capacity by an experienced palliative medicine doctor are undergoing euthanasia. Many have proceeded with assisted dying on the basis of feeling they are a burden.

There is the example of the man who lived alone, whose sister suggested euthanasia for him. His doctor observed:

He felt completely devastated in the fact that she thought that that might be an option. He proceeded with it but that rift between him and his sister was palpable.

Assisted dying is being chosen by those who live alone. This man's doctor said the following:

A man recently had a cancer diagnosis and lived alone and didn’t have anyone to care for him. An external family member initially said 'We'll do everything we can to support you'. After a week, she put her hands up and said, 'We can’t support you'.

Rather than go to rest home, he chose assisted dying. Coercion is subtle and happening regularly. There are inadequate funds to provide a good palliative care service but assisted dying takes huge resources in time and energy from palliative care. There are concerns about the grief of children and teenagers of parent or grandparents who choose assisted suicide.

Paediatricians have serious concerns about 18 year olds choosing assisted dying when it is known that an 18 year old may have adequate cognitive development but not emotional

development.

I have referred to the negative impact on palliative care. Many are seeking assisted dying because they feel they are a burden. People are requesting and receiving assisted suicide without

objective signs of suffering. People whose capacity to consent is questionable are receiving euthanasia or assisted dying. The vulnerable are being exploited and the standard of palliative care services has diminished.

Senator Lynn Ruane

My questions are mostly to Mr. Seymour and Dr. Donnelly. I will ask all of my questions at once. In his contribution, Mr. Seymour mentioned that people can choose assisted dying either by self-administration or administration by a medical practitioner. We have been having this discussion here as to whether it would be assisted dying or practitioner-led. This brings in the rights of somebody who may not have the capacity to be able to administer it themselves.

How did those conversations on giving both options go? Some countries, including Ireland, may go for a safer option where it has to be self-administered. Obviously this would create discrimination as to who can and cannot administer.

Regarding the 202 people who died during the process, how long is the process? What is the average length of time it would take for someone to be assessed in regard to meeting the criteria?

On the practitioner's experiences so far, I note that it states there is a medical practitioner registered as either the attending first or the independent second. What is the difference between those two operationally?

Dr. Donnelly referred to palliative care satisfactorily addressing people's physical and existential needs. I am sure that is true in the majority of cases. However, if someone's existential need is the inverse of living, then the existential dread comes from the fact that they do not actually want to live anymore. Remaining alive extends that existential conflict within them that they do not have access to the end of life.

On the idea of dying prematurely, the mind and the body can go at different paces. Sometimes the body can hang on for a long time after somebody feels ready to die. They are not afraid to die. They do not have any fears about it. They have probably lived a good life. They have met all the conditions and all the criteria. How does Dr. Donnelly define dying prematurely? Does it just mean the physical body giving up?

What is the psychological aspect of someone being ready and being denied the right for a long period? I wonder about the differentiation - I am not sure whether I am capturing it properly - between an almost psychological death, when grieving begins before death, and the death of the body. The body hangs on for a long time after the mind says it is ready. Is it only premature in the sense that the body gives up?

Mr. David Seymour

I can see that the Senator is grappling with many of the kinds of questions I remember thinking about deeply throughout the period this was debated in New Zealand. With respect to self-administration versus administration by a medical practitioner, there is certainly an argument that the person should self-administer, because that somehow shows their level of conviction and will. If someone else administers, that might show they were not really choosing. I accept that as a position many people hold. The way we thought about it was presaged by a comment the Senator made. It also creates discrimination, not only about ability but also timing. We successfully argued that people should be able to either self-administer, which is often known as assisted suicide, or have administration by a medical practitioner, which is, sometimes at least, known as voluntary euthanasia. The argument was that people who choose assisted dying but have a declining physical capacity may choose to end their lives earlier - while they are still confident they are physically capable - than they would if they knew they had the option of administration by a medical practitioner.

It is interesting how those numbers have played out in the early stages of the first full year for which we have data. Some 328 people had an assisted death and according to the latest report Dr. Good is responsible for as registrar - she should feel free to jump in and correct me at any time - 22 people chose self-administration and 306 people chose administration by a medical practitioner. Clearly, most people who choose assisted dying, given the choice, will choose administration by a medical practitioner. I suspect if that option was not available, many more people would have chosen self-administration and at least some of them may have chosen it earlier than their preference because they were nervous about losing their physical capacity. That is the argument as it played out in New Zealand. I heard Dr. Donnelly say there is not enough evidence. We actually have significant evidence about how our law is working.

The Senator's second question was about the experience of different medical practitioners. Did I understand it correctly?

Senator Lynn Ruane

Yes.

Mr. David Seymour

The most critical thing to recognise about that is that it is totally voluntary. Some doctors say they want nothing to do with it. They have that choice. They are able to help the conversation by saying they are not willing to participate in the assisted dying law and that they have a conscientious objection. At that point, the patient is referred to the Ministry of Health, which refers a replacement medical practitioner to the case. The ministry has a list. After the attending first doctor, if willing, or if the person's usual doctor is unwilling, the second doctor, has gone through an assessment, which usually takes some time, the person's files are referred back to the Ministry of Health which appoints a second doctor who examines the patient and those files. On the experience of medical practitioners, the key thing to note is that they are independently volunteering to do this job. No one is forced to do it. I can only point to anecdotal feedback from doctors I have met who are extremely positive. However, that is to be expected because they have actively chosen to be part of it. No one is forced. I notice Dr. Good has her hand up. She might be a good person to add to that.

Deputy Michael Healy-Rae resumed the Chair.

Dr. Kristin Good

The feedback from practitioners who provide the assisted dying service is overwhelmingly positive. They describe it as the most rewarding medicine they have ever practised. They also describe it as the most complex and challenging medicine they have ever practised. They say it is not suitable for junior doctors because making the right decision requires clinical expertise. We did a post-implementation review during which practitioners were interviewed, so we have evidence gathered by Malatest International, which is independent of the Ministry of Health, which confirms that practitioners find it rewarding. The other confirmation of that is that we have had an extremely stable workforce. We have lost a single practitioner in the past two years because he became overwhelmed by providing an assisted dying service. We have not lost any other practitioner, other than to moving overseas or for some other reason. It is a rewarding form of medicine for practitioners.

I will add to Mr. Seymour's comments on how people identified how they chose between self-administration and practitioner administration to point out that a practitioner is always present when the medication is delivered. That is different from other jurisdictions. The attending medical practitioner, who is the doctor who does the first assessment, is always present at administration. The method chosen can change up to the last moment. People can make a decision to have oral medication and then change to intravenous medication. They can make an initial decision to deliver it to themselves and then change to intravenous medication. That demonstrates the importance of having a practitioner present. The overwhelming majority chooses intravenous administration and the vast majority chooses to have the practitioner deliver it, as Mr. Seymour outlined.

The reasons given for self-administration are interesting. They are that these people have a sense of loss of control, that things are being done to them. The main two reasons people choose self-administration over intravenous administration is to regain a sense of control and in some cases, it is also to save the medical practitioner from having to administer the medication.

Mr. David Seymour

Can I quickly address Senator Ruane's final question about the mind and body?

An Cathaoirleach

Yes.

Mr. David Seymour

That was a major feature of our debate. The way our legislation emerged is clear. I think it is section 5. A person must be in an advanced state of irreversible decline in physical capability and must also remain capable of making the decision to be defined as a person who is eligible for assisted dying. There is an absolute prohibition on having an assisted dying service on the grounds of a purely psychological condition. We considered that question and came down hard on the side that a person must be of sound mind and experiencing physical suffering. We have not permitted the opposite position some people debate and speculate on, where someone who is of sound body but has a declining state of mind would be able to seek assisted dying.

I hope that addresses the question.

Dr. Sinead Donnelly

It is difficult to remember the exact questions, having listened for some time now to the responses. I may not exactly have Senator Ruane's question.

On assisted suicide versus the doctor providing it directly, in the state of Oregon it is where the patient administers the drugs him or herself. The rate of increase of requests for assisted suicide is much less than in other countries which have legislated that the doctor will actually provide the injection. We are talking about what would be best for Ireland and the people of Ireland.

Senator Lynn Ruane

I wonder if I could repeat my questions? The answer to the questions is being used, maybe, to talk about a different topic. I wonder is it better to repeat my question?

An Cathaoirleach

If the Senator wants to briefly refresh, she can.

Senator Lynn Ruane

I will repeat the question, which was around whether palliative care can substantively address the needs of the person, whether they regard someone's existential fears, or anything like that. Obviously, there will be a group of people whose existential dread and fear is associated with the idea of not being able to die within their own decision-making, and under assisted dying. How does palliative care address someone's existential fear, which is to stay alive regardless of any sort of care they are provided with?

Dr. Sinead Donnelly

I am not a politician or a legislator but in my view, when you legislate, you cannot legislate for a small number of people. You are legislating for the entire population. You have to think what are the possibilities and vulnerabilities regarding the interpretation of the legislation in the upcoming and following years. Our role in palliative care is to address, as best we can, all the distress that people express. Some of it is labelled as existential distress. My belief is that having euthanasia available is not-----

(Interruptions).

Dr. Sinead Donnelly

I refer to that form of suffering as expressed by the individual. Our role in palliative care in Ireland is a very high standard of palliative care, maybe much higher than that of New Zealand. Ireland is one of the world leaders in palliative care, not least on the training of its nursing and medical staff, as well as the infrastructure and the Government's provisions in Ireland for palliative care. What exactly is the question?

Senator Lynn Ruane

We talk about the idea of existential fear of death but somebody may have an existential fear of life. Existential dread is not necessarily that one can overcome one's fear of death, suffering or dying but one's existential fear or dread is associated with the idea that somebody will forcibly keep one alive at a certain stage of one's life, when one's wish is to die.

Dr. Sinead Donnelly

A lot of people who want to commit suicide have an existential fear of living but we do not promote their suicide. As we do not encourage them to kill themselves, why should it be different for people who are perhaps older or who have advanced illnesses of other forms? Why should we treat that form of request to die differently and what is the impact of introducing this legislation on our attempts to reduce suicide in the country generally?

Senator Lynn Ruane

Within parameters, suicide and assisted dying are different subjects. I do not agree with the conflation but fair enough. I think I have had my time.

Senator Rónán Mullen

I thank all of the guests. I have to say what has surprised me so far this evening is the confidence with which two out of three of our New Zealand guests are presenting their situation, given that this legislation is only up and running for two years, which is a wet week. I think it was Zhou Enlai who, when asked about the French Revolution and what he thought of it, was supposed to have said, "It is too early to say". What we are getting is much more caution about those jurisdictions. Where it is going on longer, we have heard from people like Professor Theo Boer in the Netherlands, who was involved in the administration of it. He has talked about the way in which social attitudes have changed over time. We have heard about the runaway train of certain states in Canada where the number of deaths through euthanasia or assisted suicide is up to 7% in some places.

I am surprised at the witnesses' confidence and their "nothing to see here" kind of reassurance. That said, I take them to be sincere in what they are promoting but I would have suggested some sort of caution, given that there are many people from whom we have heard, medical and other experts - not least psychiatrists from Ireland in recent times - who worry about the difficulty of separating out those who might have mental health challenges, and how they might fall through the cracks. We have had palliative care specialists who worry about the implications of this for their ability to deliver high-quality psychological, social and emotional support. It is not just a question of the funding of palliative care but the way the whole attitude to life gets changed when the State is willing to see the deliberate ending of some people's lives as a contemplatable option.

If I am not mistaken, I will make a comment in passing to the minister, Mr. Seymour. Is it not the case that he already wants to see a widening of the grounds on which euthanasia or assisted suicide would be available? I think he has talked about a grave and irremediable condition. Is he in a position to say that he absolutely opposes it on grounds where there might be disability or mental health situations as the basic reason for asking for it? That is my first question.

Dr. Good mentioned "practitioner intolerance". Can she tell us whether medical professionals are now more likely to be supportive of euthanasia or assisted suicide in New Zealand? What is she talking about when she talks about "practitioner intolerance"? It is a concern if some people do not or do not want to respect the supposed guardrails. Does that not suggest a push to disrespect so-called safeguards? One of the issues we are looking at here very carefully is whether safeguards can actually work, and whether they are okay in theory but do not actually work in practice.

It is a concern that none of what Dr. Donnelly has offered so far seems to be contradicted by Dr. Good. Does Dr. Good accept the examples she has given of a person having a rift in his relationship with his sister being devastated by the suggestion by a family member of euthanasia? There was another situation of families withdrawing support. On this question of the gradual changing of people's attitudes towards each other, has Dr. Good any concerns about that or is it perhaps too early to say, given that New Zealand only has this legislation for two years?

Finally, I want to ask Dr. Donnelly a question. I know Australia is a faraway place from New Zealand, and not as near as many people think it is but as far as I can see, we do not have anybody among our guests this evening to analyse or give an objective overview of what is happening in Australia. Did Dr. Donnelly, in her analysis and proposals in New Zealand, discover anything about the way in which this has occurred in Australia over the last three, four or maybe five years since it was introduced, which could inform our discussions? I thank the panel for attempting to answer those questions to the best of their ability.

Mr. David Seymour

I will go first in replying to the honourable gentleman. I did not catch his name. I do not know if he is a very good politician but I heard all the arguments that he has just made many times, and the people who used to make them do not make them any more because they have just been discredited by the facts. Yes, it is true that the Bill in New Zealand has only been in place for two years. We do not claim anything different but we do make it clear that none of the concerns that we heard beforehand have come to pass.

Second, on the Senator's question about my will to expand the Bill, the Bill that I introduced in 2015 did not have a restriction where a person had to have a prognosis of six months, or a grievous and irremediable medical condition.

That would mean that a person who had, for example, motor neurone disease or somebody who had another neurodegenerative disease like Huntington's, who possibly was not likely to die within six months, would be eligible for assisted dying. During the legislative process, I compromised and introduced the six-month restriction but that was a political compromise. I stand by my original version of the Bill and hope that in some point in New Zealand's future it will be restored. The slippery slope argument comes out repeatedly but this is not an example of that, nor are there any good examples-----

Senator Rónán Mullen

To be clear, you do not favour unrestricted choice in this area.

Mr. David Seymour

Have you read the End of Life Choice Act?

Senator Rónán Mullen

I am asking you whether you support it on wider grounds such as disability. I am just trying to see whether those who show us how limited this is-----

Mr. David Seymour

The only reason I ask if you have read it is that it could save a lot of time. If you had, you would see that it has an absolute prohibition on a person accessing assisted dying purely on the grounds of disability and on a purely psychological state.

Senator Rónán Mullen

That is your desire, is it?

Mr. David Seymour

It has a large number of restrictions and criteria that people have to face. Clearly if-----

Senator Rónán Mullen

Would you fully support for all time, is that your view?

Mr. David Seymour

That is absolutely true.

Senator Rónán Mullen

That is all I wanted to know.

Mr. David Seymour

That should not be in any kind of dispute.

Senator Rónán Mullen

There are people who are more libertarian on the thing. This is what I am trying to establish. There are people who say this is just restricted and so far, no problem. We have heard and I do not know if it is true or if you would dispute it, but is it possible you are not picking up on problems because you are not gathering data? Is what Dr. Donnelly says true, that the proposals to gather data such as in Oregon were rejected? Is there an inadequacy of data which is perhaps curtailing your ability to give us a full and accurate account of how this is working?

Mr. David Seymour

No, we have comprehensive data. We have a very rigorous infrastructure which Dr. Kristin Good is the public official responsible for overseeing.

Senator Rónán Mullen

Could Dr. Good perhaps address that question about data because it is key to the credibility of the whole process? Is what Dr. Donnelly said true about the inadequacy of data being gathered? Dr. Good is the official who is presumably nearest to the one responsible for administering this.

Mr. David Seymour

I am very happy for Dr. Good to address that.

Dr. Kristin Good

Thank you, Minister Seymour. As regards the data, there is a balance between collecting data that is appropriate to collect and that we need to collect for the purpose of the Act versus collecting data that may be of interest to researchers. We did engage with Sinead Donnelly during the implementation phase and that was reviewed right up within the Ministry around what was reasonable and appropriate to gather, particularly for a new service. We gather a large of data. It is never going to be full but also the other thing we have done is engage with the policy team around what that might look like for the future.

Senator Rónán Mullen

I would have thought that on something so serious you would be erring on the side of getting as much data as you could. Could Dr. Donnelly speak to that issue, please?

Mr. David Seymour

It sounds like that is exactly what they have done.

Dr. Kristin Good

Yes, that is exactly what we have done. We have taken-----

Senator Rónán Mullen

But you are not gathering data as she is saying. I do not know, I am not the expert here, but Dr. Donnelly is saying you are not gathering the data that was requested and she compared it with Oregon. I would like to hear more about that issue.

An Cathaoirleach

We will hear from Dr. Donnelly now.

Dr. Sinead Donnelly

In engaging with Dr. Good in requesting data to be collected, we gave a list of all the data that we thought was appropriate. We copied what is being collected in Canada and Oregon and submitted that list. We understood from Dr. Good that we did not get a final reply and based on that, we understood that was not being done. The reason we were interested, and the question Oregon asks is "why are you requesting euthanasia?". That is very important. If people are requesting euthanasia because the disability services or palliative care are inadequate, they live in a rural community, there is inequity of access or the absence of a GP, or if there is only a nurse practitioner in the area and they have not got palliative care, we need to know that if we are really interested in the welfare of the people in the country and the state of the healthcare system. I and the group of us that met Dr. Good cannot understand why that data would not be collected.

By the way, we are not the only ones who think data is not collected or has not been enough. Jessica Young is a researcher people would know well in New Zealand. She has advocated for euthanasia. She said in October that currently we do not have data about how these safeguards are operating. That is what she has said in respect of research in favour of euthanasia.

Senator Rónán Mullen

Certainly----

Mr. David Seymour

I think Dr. Good has her hand up there. She is very politely using the hand icon whenever she hears something she needs to comment on.

Dr. Kristin Good

Just to respond to Dr. Donnelly's comment that she engaged with me, she actually engaged with the team. There was a commitment from the policy team to take this extremely seriously. Our top priority is to be providing a service that is safe for people accessing the services, their families and practitioners. I object to that because it is simply not the fact. We are actually working with researchers. Part of the difficulty is that Oregon was not the only service that was up and running and collecting data. Part of the issue that the policy team looked at is what exactly that should look like. I am going to leave it at that.

Senator Rónán Mullen

If, as we have learned, and it is a rising number, 53% of those who access assisted suicide in Oregon cited feeling a burden to others as an issue of concern, that is a massive concern to people. I would expect if you are gathering data, surely it is not just about how happy are the doctors and others involved in the procedure, how happy are the people who requested it. Are you not concerned about what the social impact on your society might be and whether people who might not objectively want euthanasia or assisted suicide might end up wanting it because of a culture change? Are you not scanning for that issue as you go forward, even in these early days?

Dr. Kristin Good

We are scanning for that. It is actually part of every assessment to assess whether the person has accessed everything that is available to him or her. It also includes a scan about whether such people feel a burden on their family or to other people, and also whether they have adequate social supports and other things wrapped around them. As for the team who are now at a different organisation, part of their role is to ensure that the person is supported to make the right decision. If there are issues related to burden or a lack of social supports, those are addressed. We have evidence to show that it has changed the trajectory for some people who have applied for assisted dying and who rescinded their application. There is data that is available within the reports themselves. I review every single assessment that is performed. There are times when I go back and ask those questions, if it has not been addressed in the report, about the feeling of burdensomeness on their family or whoever, or a lack of social supports. That would not be right, to be finding those people eligible for assisted dying if those things had not been addressed. There are some people who say "I do not want palliative care" or "I do not want someone coming into my house" and that is that person's right. As best we can, we are addressing those things.

Deputy Gino Kenny

I thank our guests for giving their submissions on this issue. It is very valuable. As a country, we have been speaking about this issue for over a decade. I think Ireland is in the position New Zealand was in two years prior to the referendum. An opinion poll was done in Ireland last week and 75% of the population agreed that we need to change our legislation around assisted dying. That was not just one poll. Over the last number of years it has been very consistent that the people of Ireland want to see legislative change around this. I hope they will see it. It is a process. This committee is trying to work out a model, a template, for how assisted dying can work.

New Zealand is a very good template. It is approximately two years into an assisted dying system and the witnesses are in a good position to explain what it got right and what it got wrong and corrected. This is extremely important.

What got Mr. Seymour interested in this issue? I have been following him for a number of years with regard to what he has done.

Mr. David Seymour

I watched a very brave woman named Lecretia Seales who had a terrible cancer on her brain stem. She was a lawyer and even in the midst of enormous pain she took a case to the High Court seeking relief for her doctor to assist her to die. The judge in that case ruled that it would be trespassing on the constitutional role of Parliament, and outside the normal role of judges, to grant her her application, even though some would say that it was clear reading between the lines of his finding that he felt a great deal of sympathy for her. At that time I had recently entered Parliament and I thought if it is clearly something the Parliament has to do what is the point in being there if I am not prepared to do it. It turned out to be a much bigger challenge than I anticipated and I was very grateful to have a lot of help from Brooke van Velden. Nonetheless we did it and we quickly found that people were overwhelmingly in favour of the change, as appears to be the case in the Irish Parliament.

Deputy Gino Kenny

Mr. Seymour has been at this issue for a considerable amount of time. It has taken a referendum and legislation. There are those who are opposed to assisted dying and we have the same voices here. I disagree with their opposition to it but I respect their opposition. Some of the issues they raise in a very concerned way are with regard to safeguards whereby people would not be coerced into taking such a fundamental choice in their life. What safeguards has the legislation put in place to prevent the possibility of somebody being coerced?

Mr. David Seymour

This is a major concern. As someone who starts from a libertarian outlook I certainly do not want to create a law that allows people to take advantage of each other, especially on such a critical condition. I was deeply concerned about this also. I will make a point before I get to the safeguards in our law. It is interesting that if we analyse who uses assisted dying laws throughout the world and who are the first people to use them, we see that it tends to be people who are highly educated and highly articulate with assertive personality traits. In other words, it is people who are able to navigate the considerable bureaucracy around assisted dying who have the willpower to make it work. If it were the opposite, whereby it tended to be people of lower education with fewer means and less assertive personalities, then we might conclude that the pattern showed people were being pushed into, and acceding to, assisted dying to the extent they were not able to resist. This is clearly not the case based on the data from around the world.

When it comes to our particular law there are a large number of safeguards. As I said in my introduction, we must remember the Crimes Act in New Zealand remains in place. Aiding and abetting suicide remains a crime. Any medical practitioner participating in assisted dying could be liable for a very serious crime unless they follow every aspect of the End of Life Choice Act to the letter, in order that they can access what is, effectively, an exemption from the Crimes Act provision. One of the provisions they must follow in the first instance is that once a person has approached a medical practitioner the medical practitioner must speak to them at regular intervals about their condition. They must ensure they are fully informed and that they have had the opportunity to speak to anyone who might be relevant to them in their life, or not talk to anyone. As we heard in Dr. Donnelly's submission, we do not want to force people to talk to people who might be unhelpful. We also do not want to prevent people from speaking to those who might be helpful. Nevertheless, families and relationships are complex and we should ensure that people have the full freedom to make the most of them.

The patient must then go through a formal assessment with this doctor, once these discussions have been had over a period of time. This involves examining the patient. If the doctor has any doubt that the person is mentally competent or capable of making the decision they can go to a psychiatrist, effectively a third medical practitioner after the attending and independent medical practitioner. Either the attending or independent medical practitioner can make a referral to a psychiatrist. Having made the first assessment, the Ministry of Health selects at random a second, independent, medical practitioner who repeats the entire process of verifying that the person is a person eligible for assisted dying. If they get through that, and remember either doctor can effectively veto it as can a psychiatrist, they return to their original doctor where they have further discussions as a person now deemed eligible for assisted dying, with regard to whether they should proceed and when. Many people do not. Either they die of something else, like my friend Bobbie Carroll a few weeks ago, or they believe that having the choice in itself gives them control and has a palliative effect, as has been found internationally. It is pretty extensive.

Deputy Gino Kenny

That sounds extremely robust and that is good. Obviously people need assurance on this. There will be a second round of questions and I will come back in.

An Cathaoirleach

Exactly.

Deputy Emer Higgins

I thank our witnesses for being here with us today. It is very important for us to get the international perspective on this. This is what is being provided to us today. We have a very short space of time to come to our conclusions and our recommendations for Government on what is a very complex issue. We are very reliant on the expertise of people who work in the area, whether it be palliative care workers, doctors, medical practitioners and champions of those who find themselves in a situation where they are terminally ill and they themselves wish to die. Getting this international perspective, and at this stage we have spoken to many witnesses from around the globe, will help us shape our recommendations.

I am particularly interested in how we build in safeguards if we go down the route of legislating for assisted dying. My issue with much of what we have been debating is that we have heard people who are for it and against it but I want to get into the nitty-gritty of how, if we go down this road, it could be as safe as possible. Mr. Seymour has captured exactly how many safeguards there are in New Zealand and how many opportunities there are for people to change their minds-----

Mr. David Seymour

That was only some of them.

Deputy Emer Higgins

I will hand my time over to Mr. Seymour, so that we can go through them. I would also like to hear from Dr. Good, and from Dr. Donnelly, who is unique in being able to speak from an Irish and New Zealand perspective, having worked in both countries professionally.

Dr. Sinead Donnelly

I do not think it is wise legislation, as Deputy Higgins has probably gathered, as a palliative medicine doctor with 33 years experience caring for people who are dying. If society insists on having such legislation, which I think is very unwise because of the risks to vulnerable people, then if one person chooses euthanasia, is euthanised or receives assisted suicide due to a feeling of burden or coercion that is one too many in an entire population.

That is how I see it.

Coercion happens in very subtle ways. It is not based on class. If you are in an upper social class, you are equally vulnerable when you are dying. We have examples, from our research, which is still in progress, of people who are well off but their partner does not want a nurse in the house and they want to die in their own home. As a result of not wanting a nurse in their own home when they have advanced cancer and they need a nurse, they choose assisted dying. It is not a question of class. The vulnerable are those who are ill and facing death. That is vulnerability.

Part of our campaign in the past in New Zealand was to leave doctors out of euthanasia. It does not have to be a doctor who provides the injection or medication. In that way, the healthcare system would be kept separate from euthanasia, assisted suicide or assisted dying. That would be protective of the healthcare system and the patient. The relationship between the doctor, nurse or nurse practitioner and the patient in this setting is very complex. It is subtle and the interactions are complex and the vulnerability is great, so it is best to leave a doctor or nurse practitioner with a relationship with the patient out of it. That way, we can have legislation that provides for assisted dying if society insists on it, but leaves it outside the healthcare system. That would be wise in my view.

Deputy Emer Higgins

That is a very interesting perspective. My colleagues may correct me if I am wrong, but it is one that I do not think we have heard before at this committee. Perhaps the other witnesses would like to comment on the safeguards in place in New Zealand.

Mr. David Seymour

Perhaps Dr. Good wishes to comment on them.

Dr. Kristin Good

I will not go into a lot of detail because we do not have enough time. As Mr. Seymour said and as I said in my initial presentation, the law that we have has been described as a race to be the toughest and safest. That is how we are seen internationally. It is something I feel proud to be part of.

One of the safeguards is the non-initiation by the practitioner. It has to be initiated by the person. That is a really important safeguard. Suspected coercion is investigated at every point through the assessment process, and is documented. I review that. There is no ability to use advance care directives. There is no ability to use enduring power of attorney or a welfare guardian to access this. We have had experience with that already. There are regular check-ins to confirm the person's decision. At every point, people can rescind their decision, and that includes on the day of medication. Some people have been found to be ineligible or to rescind on that day. Right up to that point, that safeguard is in place, which is important.

It is an offence for practitioners not to comply with requirements. The previous speaker asked about that. It is something that we look at. We take action against breaches very seriously. There is oversight before eligibility and I review every single one after that in case something has come up. The only breaches that have occurred to date are around process, and they have been minor. Practitioners are educated and advised that they have to work within the law. The intolerance is not that they do not do it; they just would rather that they had better freedom. I am not saying they do not do it. They would just rather have the creative aspect that they normally have in other aspects of medicine.

Another safeguard is the destruction of the prescription when it is no longer required. The ability to conscientiously object is also a very important safeguard. There are restrictions on making the details public. There are also the statutory committees and me, who act as accountability safeguards.

Deputy Emer Higgins

I want to ask another quick question, if the Chair will indulge me.

An Cathaoirleach

Very briefly.

Deputy Emer Higgins

As we have healthcare practitioners and politicians in the meeting, I have a question for Mr. Seymour. In the referendum, 65% of the population voted in favour and 45% were not in favour at the time of the vote. That is quite a large percentage of the population. How has the Government brought that 45% of people been brought on the journey?

Mr. David Seymour

I do not mean to be rude, but 65% in favour leaves only 35% opposed.

Deputy Emer Higgins

Apologies. It is late at night here in Ireland.

Mr. David Seymour

I hope the Deputy is not the Minister for Finance.

Deputy Emer Higgins

Apologies, it is 35%. I am interested in how the Government brought that 35% of people on the journey. It is quite a significant percentage. It is over one third of the population.

Mr. David Seymour

It is a fair question.

Deputy Emer Higgins

It is a divisive issue.

Mr. David Seymour

What we have found is that the opposition has all but disappeared. That is because, first of all, no medical practitioner or individual is in any way compelled to be part of this. It is entirely about choice. The second point is that the objections that we have heard in the past were so outlandish that none of them can be sustained by the facts. It has been really interesting to listen to Dr. Donnelly. It is like time travel. She is saying all the exact same things that she was saying before the law was passed, with no observation of the fact that things have changed. Of course, Theo Boer was saying all the same things to us and we do not hear from him anymore. He is over there trying to wind you guys up. One of the realities is that once the law is in place, it becomes impossible to sustain the conspiracy theories and speculation because people can see that they are just not true. That has gone a long way to alleviating some of the tension and controversy. It is basically the reality.

I will give members one example. We were told that in the Netherlands, there were vans going around that were almost picking up old ladies off the street and euthanising them. Prior to our law passing, it was possible to say that. Of course, most people did not believe it, but the Netherlands is a long way away, they speak a different language there and it was difficult for people to verify such things. People are quite sure that is not happening in New Zealand today. A lot of the outlandish speculation and conspiracy theories have been discredited. That is why they go and try and spread them in other countries now. The reality has made it clear that it does not affect anybody who does not want to have the choice. The same can be said of the medical profession.

An Cathaoirleach

We will move to another round. I must tell members about the time constraints. I am very grateful to the witnesses. There are only three minutes per person in the second round. There is time for one question and answer each, which members will direct to one witness. It is the way we have to do it go keep within the time constraints. Senator Ruane is first.

Senator Lynn Ruane

I do not know if this is a question or just something for us to think about based on the contributions. It is something I have been thinking about for months now, namely, the idea of burden. In some cases, there might be a person who has lived a completely independent life and becomes terminally ill or develops some sort of progressive disease. It is that very transition existing that creates the idea of burden in their mind because they never want to live a life where they have to rely on others. I get a bit stuck on the idea that burden is somehow related to all the external factors. In some cases, of course it is. Of course, some people will feel like a burden if they do not have family support, a home care package or an accessible home. There are some things that can alleviate the burden on people and would result in them not choosing this. For me, and it might be an issue to discuss with the psychologists when they are in, it is the idea that you could probably meet the needs of every person that comes up, in terms of the psychosocial needs, family support, finance to meet their needs, access to medicine, all the physical supports and fully supporting the family, and still somebody could say, regardless of all of those factors, that it does not change the internal psychological factor that they still do not want their family or anybody else having to do this for them. Sometimes burden is not only about the external supports, but about a person's wish to live independently.

When that independence is completely stripped from them, they may decide that they do not want to live with any sort of reliance on other people. I sometimes think we need to maybe tease the idea of burden out a little and away from only the things that seem like external supports to reduce burden.

An Cathaoirleach

Does anybody want to say anything to that in one minute?

Mr. David Seymour

I will quickly take the facts the Senator gave from a slightly different point of view. The way it has been described is that the person is somehow a victim, is unable to make his or her own choice, and is somehow corralled into a choice. When I was on one of my many speaking tours on this, I met a woman who said she had just seen her mother die, and she never wanted her family to see her like that. She was quite happy to cut the last ten days off and go on her terms and timing, with the choice, control and dignity she deserved. That woman probably would have said she did not want to be a burden, but it was not as though she was not in control or not making an active choice. She was someone who knew exactly what she wanted based on her life experience and was completely in control. Of course, she was a proud mother and had been a proud daughter, and her family was of deep concern, as was how they saw her, but I thought it was quite an admirable position for her to take.

Deputy Gino Kenny

I have a number of questions for Dr. Good regarding the period after the referendum and legislation and so forth. Did extra funding for palliative care happen in New Zealand? My second question is on those who have availed of assisted dying. I do not know what the numbers are. Dr. Good might say what they were for the first couple of years. What environmental settings were those people in? Were they in a hospital, in a hospice or at home? I guess the majority of people who want to avail of assisted dying will be at home, although it does not have to be. They could be at the top of a mountain, if they want. It is their choice at the end of the day. Will Dr. Good comment on those subjects? I love her library.

Dr. Kristin Good

Thank you. It gives me great pleasure. I will start with the Deputy's last question. We anticipated the majority of assisted deaths would happen within the community and that is how it turned out to be. Some 78% are in the home, approximately 5% are in a public hospital, and about 15% are in a community facility. That is a huge shift from day one when the Act came into force because most community facilities did not see that there was going to be any place for assisted dying within their facilities. That included residential aged care. There was obviously a huge shift within a year. We have a single hospice that is working very closely with palliative care and assisted dying, and having assisted deaths and supporting them on their premises.

The next question was on those who have availed of-----

Deputy Gino Kenny

Will Dr. Good answer on funding around palliative care?

Dr. Kristin Good

Yes. Government agreed to fund assisted dying as part of the ordinary health service. Assisted dying is fully funded. It is funded on a fee-for-service basis. We consulted with practitioners around what was going to be acceptable to them because this is extremely time-consuming medicine. We also had an independent organisation give advice on the level of funding that was deemed appropriate. I am aware that in other jurisdictions where funding has not been available to practitioners, it has been very hard to attract practitioners to do this work.

I cannot really speak on funding for palliative care as that sits outside my remit. It does not sit with the Ministry of Health, although I understand there is some work around that. It did not happen at the same time as assisted dying came into force. What I have seen, however, is that people who make applications for assisted dying can get access to palliative care where they previously could not. In those circumstances, that has changed the trajectory for some people. Some 77% of people are accessing assisted dying at the single point in time where they contact the service to explore the option of assisted dying for them. Quite a proportion of those people who were not accessing such care do so subsequently, but some people just do not want to access palliative care in the same way that some people do not want to access social supports or medical treatments. I may not have specifically answered the Deputy's question on funding because it does not actually sit with the Ministry of Health.

Deputy Gino Kenny

Thanks. That is very useful.

An Cathaoirleach

We have a three-minute slot, so it will be a question directed to one person.

Senator Rónán Mullen

I stepped out for a moment so it may be that Dr. Good already had a chance to answer my earlier question about the issue of practitioner intolerance. She may have addressed that but I would like to hear more about it.

Dr. Kristin Good

To be clear, as minister Seymour outlined, the End of Life Choice Act has a lot of safeguards and, as I mentioned, is very process driven. This is not the way medical practitioners normally practise medicine. While there is a science to medicine, there is also an aspect of creativity where people have the choice to make their own decisions. There has had to be quite a lot of work with practitioners to ensure that they understand that they work within the very strict boundaries of the law, which they understand because it is part of their training. Sometimes, they say this is just not patient centred or they do not want to do this, but there has been a single breach around this, which we are managing at present. The vast majority, and we are talking about thousands of assessments, have been entirely within those extremely strict boundaries. I check that in every single form. The other statutory bodies are also responsible for accountability so it is more about an attitude rather than actual behaviours. That is something we have stressed in training.

Senator Rónán Mullen

How is it manifesting itself though? Is Dr. Good in a position to say anything about the breach?

Dr. Kristin Good

I am not in a position to say anything about the breach. It was a breach of process. It was not a breach around eligibility criteria. We initially managed the breach with an educational focus but, at some point, it has to be considered whether something more is required. This is a service that is two years old.

Senator Rónán Mullen

How extensive is the practitioner intolerance?

Dr. Kristin Good

I would say it is low.

Senator Rónán Mullen

Sorry?

Dr. Kristin Good

It is low. We worked very hard to make sure of that. At every forum, we said that this is different and practitioners have to work within the law. Mostly, medicine is not working within the law. It is different.

Senator Rónán Mullen

How low is low?

Dr. Kristin Good

One practitioner out of 142 has done a single thing.

Mr. David Seymour

I know the Senator is desperate to find a smoking gun, but it ain't there.

Senator Rónán Mullen

This is about life and death. I do not think anybody should be laughing. This is about life and death. If one single person is coerced or loses his or her life because the witnesses have not done their job adequately is why we have to scrutinise this. It is not for jokes. This is life and death. This is about vulnerable people. We are all here in good faith trying to scrutinise the issues carefully. If there is a smoking gun, the witnesses should be more worried than we are to find it.

Mr. David Seymour

It is not there. That is the problem.

Dr. Kristin Good

We would be very concerned if there is a smoking gun. The breach related to the timing of submission of a date and time form. It was purely around process. It was not around anything to do with assessments, which are very highly scrutinised. I absolutely agree with the Senator. The whole team has worked to make sure, and it is my job, that the right things have happened in respect of every single application. The breach was an administrative thing, where the practitioner submitted the date and time form within a shorter period than he or she should have because the date and time were brought forward. It had already gone through compliance.

Senator Rónán Mullen

That is important. I thank Dr. Good for clarifying that. New Zealand is only two years into this but, please, no smart comments about smoking guns. So many jurisdictions in the world are full of smoking guns, as we have heard. It is not a matter of laughter or smart comments, no matter how eminent the politician is at the other side.

An Cathaoirleach

Thank you very much, Senator Mullen. On behalf of the secretariat and committee members, I thank Mr. Seymour, Dr. Donnelly and Dr. Good for taking part in this meeting to share their experience with us and for engaging in such a frank and forthright way with members. We realise they are all very busy people and we thank them very sincerely for sharing their time and expertise with us.

We will now suspend briefly before moving on to the next part of this meeting.

Mr. David Seymour

Thank you and good luck.

Dr. Kristin Good

Thank you and good luck.

Sitting suspended at 8.31 p.m. and resumed at 8.35 p.m.

An Cathaoirleach

We will now move on to our next topic which is assisted dying in Australia. I welcome Dr. Philip Haig Nitschke, director and founder of Exit International Australia, Mr. Mike Gaffney, member of the Tasmanian Legislative Council, and Dr. Greg Mewett, palliative care physician in Ballarat, Victoria, Australia. We thank them for joining us at this time in our evening and their morning, which might not suit them. Members will ask questions after all witnesses have made their opening statements. Members can ask an individual a question or can address a question more generally to all witnesses. First, I invite Mr. Gaffney to make his opening statement.

Mr. Michael Gaffney

I thank the Chairman and committee members for the opportunity to appear before the committee. It is my pleasure to assist the Irish people and members of the joint committee with their deliberations on this most important issue.

Tasmania is a rural island state with a land area that is almost identical to the Republic of Ireland and a population of approximately 570,000. Our Parliament operates with a House of Assembly, also known as the Lower House, which has 25 Members, and a Legislative Council, known as the Upper House, which has 15 Members. There are two major parties, together with a number of independents. I am an Independent Member of the Legislative Council.

The Tasmanian End-of-Life Choices (Voluntary Assisted Dying) Act was the fourth time assisted dying legislation had been introduced. None of the previous three attempts, in 2009, 2013 and 2016, were successful. Indeed, the legislation did not even reach Committee Stage. The Bill was introduced by me as a Private Member’s Bill directly to the Legislative Council, where it passed with unanimous consent before being debated by the House of Assembly, passing by 19 votes to six. It received royal assent on 22 April 2021.

A critical factor in the Bill's success was its bespoke drafting, with considered legal and community input from sources that included me presenting the initial draft to 35 public forums across 29 council areas, numerous briefings and facilitating considered stakeholder input from all sides of the debate. In total, I have presented to 117 community forums across Tasmania. The widespread community engagement and involvement was definitely advantageous for the successful passage of this legislation. It reflected the community’s wider support for voluntary assisted dying as a legitimate and regulated health and well-being decision.

The Tasmanian Act has unique elements such as the role of nurses as administering health practitioners, AHPs, the inclusion of injury as part of the definition of a relevant medical condition, the anticipation of intolerable suffering as a legitimate reason, and the right of a person to apply for a determination from the commission to be exempt from the prescribed time limits, together with numerous essential safeguards. I look forward to answering questions and clarifying issues raised in the briefing document provided.

An Cathaoirleach

Thank you, Mr. Gaffney. Dr. Greg Mewett is next.

Dr. Greg Mewett

Thank you for the invitation to appear before the joint committee today. My involvement with voluntary assisted dying here in the state of Victoria in Australia is based on long experience as a general practitioner in the large regional centre of Bendigo in Victoria. During that time, I developed a special interest and expertise in palliative care. Later on, I left general practice and commenced specialist training in palliative medicine in Melbourne. I became a specialist palliative care physician in 2007 and since then I have practised in Ballarat, another large regional centre in Victoria, until my semi-retirement in January of this year.

In 2018, I was invited to serve on the Victorian Government’s voluntary assisted dying implementation task force. This task force was given the responsibility of guiding the introduction of the Victorian voluntary assisted dying, VAD, Act. Victoria was the first state in Australia to introduce VAD legislation. This 18-month implementation period was necessary to ensure the setting of the scene for accessibility and viability of voluntary assisted dying as an end-of-life option in our state.

Since the VAD legislation came into effect in Victoria on 19 June 2019, I have been basically been involved, as a specialist palliative care physician, in the assessment of more than 80 patients who have requested access to voluntary assisted dying. I have acted as either the co-ordinating medical practitioner - that is, the doctor who does most of the legwork and co-ordinates the patient's journey through this - or the consultant medical practitioner - that is, the second practitioner who has to offer an independent opinion. I have been involved in 73 of those patients.

Of the 49 patients for whom I have been involved as the co-ordinating doctor: 18 patients died before completion of the VAD process, for various reasons; six cases were withdrawn, usually due to lost decision-making capacity or they decided not to proceed; 21 patients died by self-administration of the VAD substance, mostly in their own homes but some in local nursing homes, and four of my patients died in our local palliative care unit with VAD; and one patient died at home by intravenous practitioner administration, which I administered.

In summary, the important things I have learned throughout this involvement with VAD are as follows. These people who had assisted VAD did not want to die – they would much rather have lived and, without fail, their families wanted them to live. However, they had a terminal illness from which they were going to die and they had reached the limits of their suffering. Second, it was interesting that they came from all walks of life – a wide variety of socioeconomic, educational and religious backgrounds. Only a very small minority - perhaps to my surprise initially - were what some people would label as "control freaks". However, without doubt and without exception in my experience, they were very determined people who had firm, well-considered views about how they wanted to manage the end of their lives with a terminal illness. Fourth, and obviously I am a palliative care physician working in a palliative care team, all of my patients had access to excellent palliative care right to the very end, either as inpatients, in the community or in both settings. The issues of coercion, cognitive impairment and severe depression, often raised as concerns as potentially adverse factors in informed decision-making, are properly and thoroughly screened out at initial interviews and repeated interviews. They are not issues of substantial importance in our practice as long as vigilance is maintained, as it should be in any other medical practice I should say. Also, the important thing is that these people are not “suicidal” and are, without exception, offended by any implication of mental illness and suicidality.

In summary, my practice, and those of a number of my palliative care colleagues here in Australia, is living proof that voluntary assisted dying, as a valid and now legal end-of-life choice, is not at odds with the overall aims of palliative care, that is, to use a patient-centred approach to support people with advanced, progressive, incurable illness and their families and relieve suffering wherever possible.

An Cathaoirleach

I thank Dr. Mewett and we will now hear from Dr. Philip Nitschke, who is very welcome.

Dr. Philip Haig Nitschke

I thank the Chair and I am very pleased to have a chance to address the committee. It is an important time and an important day because I am asked to comment on the Australian experience and I have some long experience with the situation there. I say it is an important day because today the last state in Australia has reintroduced or brought in legislation rather similar to the one I first became involved in some 25 years ago when the world's first legislation that ever allowed a doctor to provide a lethal injection to a patient came in.

That was in Darwin in the Northern Territory back in 1996. At that time, a heated debate took place within society in Australia about whether or not legislation should come in to allow a doctor to end the life of a patient, legally. I was involved in that struggle. I was a doctor practising the Northern Territory in Darwin then and I supported it but I was one of the very few. That law came in and it became a model which many countries have followed and it is now interesting to see that after 25 years, or a bit more, the last state in Australia is finally catching up.

What happened in the Northern Territory was that the law came in and the opposition was savage. There was opposition from the church, saying it was against the rule of God; opposition from my own profession, saying it destroys the doctor-patient relationship; and opposition from people involved with ethnic communities, saying this is fundamentally racist legislation which set out to and will destroy the lives of the ethnic community, the aboriginal people of the north.

Despite all of that opposition a law did come in. It was conservative legislation, very similar I am sure to the model that Ireland will subsequently introduce, where a person had to be terminally ill. I had to find four doctors - I was one of them so I had to find three others - to certify that this person was terminally ill. They had to be an adult, they had to be living in the Northern Territory and, importantly, they had to be of sound mind and have mental capacity. If all of those things came together, like the alignment of the planets, then that person could get help to die. Four of my terminally ill patients died.

I provided what turned out to be the world's first legal, lethal voluntary injection to four patients. In fact, I did not provide the injection because what I did was build a machine so they could press the button and the machine would deliver the injection. It moved it from what would be considered to be voluntary euthanasia, where I sat there and gave them an injection and they died on the end of my needle, to a situation where it became assisted suicide. They pressed the button. It was clear that it was not a doctor doing it to a moribund patient, but it was a situation where the person knew what they were doing, answered the questions on the laptop and pressed the button. That machine is now in the British Science Museum in London.

The law only lasted eight months. The federal government of Australia, moved on by these pressure groups, overturned the law and Australia went back into the Dark Ages and it has remained there for 20 years until, as we have just heard, Victoria came in some 20 years later.

What were the lessons learned? That is what I am to talk about. There are a number of them and I will summarise them quickly as the time is limited. I would argue that medicalised law, which is what we had in the Northern Territory and what the committee is considering here, is a mistake. If Ireland tries to codify how sick a person has to be to be eligible for assistance it will run into trouble all the time, as we did. I suggest there are better ways to do it. I will give an example. Many of the committee members will know about the situation of Tom Curran with Marie Fleming. I knew Marie; I met her. In a situation where a person may die in two days, two weeks, or two years do not set up situations that are so restrictive that people fall through the cracks and there is legal challenge after legal challenge. There are better ways to do it and I say the better way to do it is to not have a medically-based, what we would call a medicalised, law but have a rights-based law such as we see in one place in the world, Switzerland. I have a lot to do with Switzerland and I strongly urge the committee to consider that as an option, as the right model.

A person must be of sound mind, and they have to do it themselves and have to press the button, but it gets away from that idea of having to go off and ask a panel of doctors, "Am I sick enough to satisfy your criteria of what the level of suffering is?" Those are the main lessons I have learned and I hope Ireland will do something that Europe will be proud of and do something different from the mistake I see in places such as the Netherlands where I now live, which finds itself subjected to challenge after challenge about eligibility.

I will finish on one final point. Do not restrict the method or the means by which a person dies. I strongly urge that it is left open because we see new methods come in and I urge that one does not try to restrict it to drugs, intravenous or oral. The use of gases is very important and we see that happen now. That will provide a better, more peaceful and reliable death for many people.

Deputy Gino Kenny

I have a question for Mr. Gaffney regarding the number of attempts before assisted dying became legal in Tasmania. What were the reasons in 2009, 2013 and 2016?

Was it the case that the legislation was not up to scratch, or was it that the people of Tasmania were not ready for assisted dying?

Dr. Philip Haig Nitschke

Does the Deputy mean why so many attempts to bring in legislation failed?

Deputy Gino Kenny

Sorry-----

Mr. Michael Gaffney

Is the Deputy asking me?

Deputy Gino Kenny

Yes.

Mr. Michael Gaffney

The first year I was elected to the Tasmanian Parliament was 2009. A person called Nick McKim, who is a member of the Green Party in Tasmania, introduced what he called the "dying with dignity" Bill to the Parliament. That came as a surprise to everybody. The Parliament then had a select committee of three Members of the Upper House and three Members of the Lower House to look at that Bill. It was only a 19-page Bill. I was, in those early days, in favour of a person's right to choose, but I found the legislation wanting and the committee could not recommend it. It, therefore, did not get passed in either the Upper House or the Lower House.

The next time, in 2013, the then premier, Lara Giddings, introduced a Bill again with Nick McKim in the Lower House. It was defeated by 13 votes to 12. Three years later, it was defeated by 16 votes to 8. The Bill was markedly different from 2009. In 2012 or 2013, the term "voluntary assisted dying" was introduced. In 2009, palliative care and the churches were quite aggressive in saying, "Hang on, we do not want people to die, but for people live on". They set up a media roadshow against the passage.

In 2013, it was just defeated. It did not even get to Committee Stage. It was further away in 2016. In 2017, I was asked whether I would carry the Bill in the Upper House if was brought back in 2019. I said that I would but looking at the numbers in the Lower House I said I did not think it was going to pass if it were introduced in the Lower House. I asked them to let me do it as a Private Member in the Upper House. Once they took that on board, they thought it was a great idea. I think they expected me to carry the Bill defeated in 2016. I said to them that was not going to be the case, because I needed to be confident that any Bill I introduced would be best suited to the Tasmanian people. I did a two-and-a-half-week tour of the Netherlands, Belgium, Switzerland, Canada and the USA. I met with some random people. I got an international group together to be a support. I came back and worked on the Bill.

I put out a draft Bill, which was some 120 pages. The final Bill that went through was 190 pages. I was not precious about what the Bill included. I just wanted the best legislation. I have some really good examples of the forms I presented, where I got feedback from educators, residents, doctors, nurses, etc., about what the Bill should include. Eventually, the Bill was passed.

Deputy Gino Kenny

I have a number of questions for Dr. Mewett. In relation to the states of Australia, it is my understanding New South Wales legislated and, as of today, people in New South Wales can avail of assisted dying. I think they are looking at legislation in Canberra. Is there any kind of difference in criteria in each of the states? My other question to Dr. Mewett is regarding the last line of his presentation, and I think it is really important that he says this. He says that these people are not suicidal and are without exception offended by the implication of mental illness. That is really important, because it is highly offensive to conflate those two issues.

Dr. Greg Mewett

In regard to the first question, there is some variability in the laws of the six states of Australia. The capital territory, which is Canberra, and the Northern Territory have now been given permission to debate the legislation and they will inevitably do that. Generally, in Australia, the criteria are that you must have an illness that is expected to cause your death within six months, or in less than 12 months in the case of a neurodegenerative disorder, which is classically something like motor neuron disease. After an extensive consultation and a law reform commission review, Queensland came to a conclusion, which I think this is correct, that there is no logical reason you should have a different six-month prognosis, for example, for cancer, and then have a 12-month prognosis for neurodegenerative disorders. There is no logical reason for that. In Queensland, they have said that you have to have an illness that is expected to cause your death within 12 months, regardless of the type of general illness. That is a major improvement and I hope that in other territories, when other states review their legislation, they will say that there is no reason for that.

There are a number of other criteria, for example, residential criteria. I will not go into great detail on that, because we have six states. That is quite different from what happens in Ireland, of course. You have to be a resident of that particular state. However, Queensland has made exceptions for that, which is useful, because a patient may travel from one state to another to be cared for by a relative at the end stage of their life. They should have access if they are living in that state. There have been some residential criteria which have been loosened up a little bit in Queensland.

The other point I made about the patients is that there is often the assumption that if you want to end your life, you must be suicidal. This is a huge issue that we do not have time to discuss today. I will say briefly that the American Association of Suicidology, AAS, which has been in existence since the mid-1960s, brought out a discussion paper on this a few years ago. It concluded that so-called physician-assisted suicide, as it is often called in the US, is not the same as voluntary assisted dying. In fact, voluntary assisted dying should not be called “assisted suicide”. Those patients are not suicidal and this conflates two very important societal issues. That is often done to try to blur the issues for people.

The patients I have looked after, without exception, are not depressed. They are not depressed to the point that it affects their decision-making capacity. Just because someone is a bit depressed, it does not mean it affects their decision-making capacity. Depression is a very broad term even in medicine. These patients would therefore be offended if someone said to them that they must be mentally ill because they want to kill themselves. No, they want to die a little earlier than they otherwise would.

Senator Lynn Ruane

I thank the witnesses for their contributions. I have a couple of questions. In Dr. Nitschke’s contribution, he said that in the 1990s, he was working as a doctor in Darwin and he was one of the very few members of the medical profession who supported the introduction of the law. Considering the decades of experience Dr. Nitschke has in that space, has he seen that drastically change in terms of the profession itself?

Dr. Philip Haig Nitschke

Yes, there has been a significant shift. In fact, as I said, there were very few doctors. It was almost impossible to find the required four doctors to support a person’s request for help to die. I spent months with the first person who used that law simply trying to find another doctor to agree. That has changed, but I might add here that it has changed really grudgingly on the part of the organisations, such as the Australian Medical Association. It seems to me that it changed when the medical profession saw that it was in control of the process. Now, there is a situation where the person who has the keys to gate or who makes the decision is not the patient. The person who makes the decision is the doctor. That is true in the Netherlands, where I am now based. It is true wherever you bring in these laws. Yet, it is not true in Switzerland. When you gave that control to the doctors, the medical profession was a lot happier because they were running the show.

That is what I worry about regarding this medicalisation of death and dying where you take away the control of the individual and hand it to some other body, such as a panel of doctors, who will adjudicate as to whether your suffering is good enough for them to agree that you would be better off dead.

Senator Lynn Ruane

There is a line in regard to the Swiss human rights approach.

We have spoken about "self-administered" or "physician-administered" but we have not ever spoken about what exactly is administered and what that process is. Dr. Nitschke goes into it in a number of parts of his opening statement. He stated:

...the prescription of the pentobarbital remains the task of [the] medical [profession]. However, there is no requirement under any Swiss law or regulation that prescription substances must be used.

Does that mean off-license or unlicensed drugs are used? What exactly does that mean?

Dr. Philip Haig Nitschke

It would be possible. I think everyone accepts the fact that pentobarbital, or Nembutal, is the premier premium drug to use. It is controlled in a sense by the medical profession so it can and effectively gives the control of that process to the profession. It brings up a problem though because-----

Senator Rónán Mullen

Sorry to interrupt. I have to put a point of order. What Dr. Nitschke is saying is interesting but did we have a discussion at some stage at the committee about whether we were going to talk about drugs in open session? Does it raise issues about the vulnerability of people who might be watching and so on? I have some recollection of there being concerns about-----

Deputy Gino Kenny

Never heard it.

An Cathaoirleach

I have to be honest and say I cannot recollect it.

Senator Rónán Mullen

I am obviously thinking on my feet and I am not in any way trying to obstruct Dr. Nitschke. He is clear about the point he is making and his position.

An Cathaoirleach

If it is helpful, we can suspend for two minutes and we will check.

Senator Rónán Mullen

Yes, it might be helpful because an issue arises here concerning vulnerable people.

Senator Lynn Ruane

When we spoke with hospices, the hospices named the drugs that are administered.

An Cathaoirleach

We will go into private session for two minutes.

Senator Rónán Mullen

I am open to correction.

The joint committee went into private session at 9.02 p.m. and resumed in public session at 9.05 p.m.

An Cathaoirleach

I remind everybody that this committee discusses dying, including suicide. Support information can be found on the committee’s webpage. We will now continue.

Senator Lynn Ruane

We will start that aul clock again, right? Basically, my question was around how to navigate this system. Is that sentence saying that under a legal model, physicians are able to use drugs that are not licensed under the medical council?

Dr. Philip Haig Nitschke

The general situation is that there is a set of drugs that are considered to be effective and are traditionally, generally controlled by the medical profession. When you move into a situation where legislation does not say that the medical profession has to be involved, such as in Switzerland, of course someone has to prescribe the drugs. Therefore, the medical profession is dragged into the decision-making. That presents problems under Swiss law when, for example, as we commonly see, couples who want to die together where one is sick and one is not or in the case of very old people who simply say they are not sick but they want to die. The medical profession is then confronted with a problem. How do I give drugs to a non-sick person? The Swiss Medical Association is upset about that issue. However, it is not an issue in Swiss law. In fact, we will be using gas in Switzerland, which is not controlled in any way and does not require medical approval.

Senator Lynn Ruane

I wanted to understand how that could operate. I just wanted to understand that sentence from Dr. Nitschke’s opening statement and now I do.

I have a question for Dr. Mewett. There was an interesting sentence in his opening statement and I wish to tease it out.

Only a very small minority were what some people have labelled (pejoratively) as "control freaks". However, they were, without exception in my experience, very determined people who had firm, well-considered views about how they wanted to manage [to] end ... their lives with a terminal illness.

What is behind that sentence? Obviously, somebody was using pejorative terms. Is this about people who had OCD or any sort of neurodivergence who others said were control freaks who wanted to control every single thing about how they lived or died? Is there something behind that that I am not understanding?

Dr. Greg Mewett

The point I was making there is that when I started working, I figured that these people – the word “control freaks” is often used, as I said, pejoratively – were people who had a lot of control over their life, their business and sometimes their families. They are used to being in control and therefore want to control everything, including their death. However, only a very small minority would fit into that. I would not use a diagnosis of OCD, to which the Senator referred. The majority of these patients are not control freaks but have firm views about things, as I said in that sentence. They have formed views often over many years and often prior to when assisted dying was even discussed and then came into legislation. They form views, if you like, and their own philosophy about life and death. They become firmly of the opinion that if they have an advanced progressive illness and will die, they wish to have some control of the timing and manner of their death. That is what I was getting at in that sentence. They are not control freaks but are actually normal people who are very determined. They are not wishy-washy or people who are bending in the wind because someone is pushing them in a particular direction. In assisted dying, it is often feared that people will be coerced. We see mainly people being coerced out of assisted dying, not into it. We do not see coercion in that direction and we discussed that broadly in our community of practising doctors in VAD in Victoria.

An Cathaoirleach

I thank Dr. Mewett.

Dr. Greg Mewett

I wish to add something about Dr. Nitschke’s comments. Dr. Nitschke is working in the Swiss space. If that is a particular model that Ireland is looking at, that would surprise me. The Switzerland situation is an outlier, given that VAD – or assisted dying or whatever you would like to call it – is a civil issue, not a medical one. That may be Dr. Nitschke’s preference but in fact that model is not adopted anywhere else in the world. What actually happened in Switzerland-----

An Cathaoirleach

We are out of time, Dr. Mewett. I call Senator Mullen.

Senator Rónán Mullen

I thank all of our experts and guests for attending this evening or this morning, depending on where they are. I might start with Dr. Mewett, who is a palliative care physician. Could he give us a quick definition of what palliative care is for him?

Dr. Greg Mewett

Palliative care is the philosophy of medical care which really addresses the issues and the suffering related to people in a bad, progressive, incurable area of illness and disease. It supports their families psychosocially, physically and spiritually to improve the quality of life until death. That is the philosophy of care and a style of care in medicine.

Senator Rónán Mullen

That would be one that would be commonly shared across the world. I did some work with the Council of Europe in terms of the provision of palliative care in Europe. I am fascinated by Dr. Mewett because he is a palliative care physician who supports assisted suicide or assisted dying, call it what you will. Certainly, the majority in the profession in Ireland would be very concerned about a change in the law. If he does not mind me asking, is Dr. Mewett an outlier in terms of palliative care physicians in his jurisdiction?

Dr. Greg Mewett

Initially, I would have been called an outlier, but that is becoming less and less so. I am particularly interested in the fact that a lot of the younger palliative care specialists coming through training are really looking at this in a more open and broad-minded way. They are saying that we have a philosophy of palliative care, which I have just outlined to members and they are very au fait with, but also that voluntary assisted dying has been introduced as yet another of a number of end-of-life choices that people may or may not make. A minority of patients in palliative care will choose assisted dying as an end-of-life option. Others will choose other options at the end of life. It is not inconsistent with palliative care to allow people certain options at the end of life.

Senator Rónán Mullen

I am aware of Dr. Mewett's view and I read a very interesting opinion piece he wrote about the law in Scotland. He spoke from his own experience, and some of what he had to say in that opinion piece was in his presentation today. I suppose it would be fair to describe Dr. Mewett as somebody who puts the emphasis down strongly on the person's choice. Autonomy comes up frequently in this debate. Does Dr. Mewett have any sense that autonomy is a social thing, and that the exercise of one person's autonomy might have implications for other people? I think what is coming across strongly from palliative care physicians here in Ireland, who are not necessarily coming from religious or other dogmatic views as some people might think, is that somehow the very fact that there is a changed legal attitude to the deaths of some people can cause a change of attitudes in others on other vulnerable people. It is still early days in Australia with assisted dying, but we have heard from people like Professor Theo Boer, who was originally very much on board with Dutch euthanasia law, concerned about the change and the drift in social attitudes. We have heard horror stories from Canada, where it is not just the middle class, the educated or the relatively well-resourced. We are conscious of the health-economic thing in the background and down the road, people being vulnerable. Can Dr. Mewett comment on that aspect of it? In other words, can he put himself in the mind of other palliative care specialists who worry about what this might trigger?

Dr. Greg Mewett

I think that is not peculiar to palliative care doctors. I have heard Senator Mullen talking about the runaway train and the slippery slope. That is a common argument that is raised in this space by a whole range of people, whether they are in medicine, philosophy, ethics or whatever. That is a whole different ball game. The law has been in place for four and a half years now in Victoria. I am not an expert on the Canadian or Dutch systems. All I know is that autonomy, as Senator Mullen describes it, is a relative concept. Most people are not islands unto themselves, as John Dunne once said in a pub, but they are making decisions in the context of their own families, their own situations and their own social groups. That does not mean that autonomy is not important. We already give people a lot of autonomy in palliative care. We like them to choose where they would like to die. We like them to choose whether they want to continue with further chemotherapy for their cancer. We like them to be able to decide whether they wish to stop their non-invasive ventilation for motor neurone disease. Yes, autonomy is not just one person making their own decision. It is autonomous within their own family, societal group and community. It is important, in modern day social ethics, that people have an autonomous view. I believe that voluntary assisted dying is but one autonomous view that people may make, often in conjunction with their own families, friends and loved ones.

Senator Rónán Mullen

I am fascinated-----

Dr. Greg Mewett

I do not see that palliative care has any specific ownership of the problems about slippery slopes or whatever. All I know is that these patients deserve a legal end-of-life choice that they otherwise would not have to end a suffering that is inevitably going to end in their death. Palliative care historically has not accepted assisted dying because of philosophical problems, but that does not mean that these philosophical problems do not evolve over time as society evolves over time.

Senator Rónán Mullen

Our college of psychiatrists has had similar concerns. What is fascinating is that listening to both Dr. Mewett and Dr. Nitschke is that they seem to have radically different views, in that for Dr. Nitschke it is about taking it out of medicine and it based on the idea that a person should not have to have a reason or have to meet any test. Dr. Mewett is saying that is an outlier. Does he think what is going on in Switzerland is an outrage? Is he philosophically opposed to the extension of choice to people who might not be terminally ill? He is making the point that Switzerland is unusual, but he is not necessarily opposed to a more libertarian regime, is he?

Dr. Greg Mewett

I have doubts about certain aspects. What I am actually concerned about in Switzerland is that it is actually not as libertarian as it makes out. You have to actually do the assisted dying yourself. In fact, euthanasia is illegal in Switzerland. It is a furphy. In Victoria in Australia, you have the ability either to self-administer or to opt for practioner-administered dying. I think that should be available because there are some people who cannot self-administer, cannot press the button, as Dr. Nitschke would say, or cannot swallow medication. You have to have both options available if you are going to honour this particular end-of-life choice.

Senator Rónán Mullen

But if a person-----

Dr. Greg Mewett

I do not have a libertarian view about it. I think there has to be a legal and medical framework. I disagree with Dr. Nitschke that the medical profession loves it because it is in our hands. That is not true. That may be true in some parts, but it is certainly not true in our part. We take this on as a serious medical task and a duty to patients to help them whenever we can. We often talk people who do not need it out of having assisted dying, or we can use other options. We are not just ticking boxes and giving people the green light. This is a very serious part of our practice as palliative care physicians.

An Cathaoirleach

I have to move on to the second round, in which each contributor has four minutes. They can use them whatever way they like. Deputy Gino Kenny is first.

Deputy Gino Kenny

I want to go back to Dr. Mewett in relation to the number of patients that he has dealt with and so forth. He said in his statement that 18 died before completion of the voluntary assisted dying process. What happened to those 18 people? I ask him to elaborate on that.

Dr. Greg Mewett

Certainly. From start to finish, that is, from the time the patient makes their first request until such time as they may be issued a permit and receive the medication, the voluntary assisted dying process can take anywhere between three to four weeks. If people are fairly late in making the application, then that is a long time in their end of life. Many people deteriorate quite rapidly in that time. They may lose the capacity to make a decision, they may die very suddenly, as patients sometimes do with terminal illness because of a complication, and therefore do not make it through the whole process of the voluntary assisted dying. Those patients will continue to have excellent palliative care, as they all do, to the very end, regardless of how they die. That is what happens. That is happening less when people are realising that it takes a little longer to get through the process, so they may start the process a bit earlier.

Deputy Gino Kenny

From the time somebody requests assisted dying, what timeframe are we talking about on average? Obviously, every case is slightly different.

Dr. Greg Mewett

In my practice, the average would be about three weeks. If all the planets align, it can be less than that. I think 16 days is the median in some parts of Victoria.

I always tell the patients it is somewhere between three and four weeks. That is because a number of assessments have to take place, involving documentation etc. It is around about three to four weeks.

Deputy Gino Kenny

As Dr. Mewett stated, in those situations some people who have been given permission to access voluntary assisted dying will not go through with that. There are many reasons for that. There is a comfort that someone coming to the end of life has an insurance policy that if things get really bad, they have this choice and control at least. For some people that is greatly comforting. I ask Dr. Mewett to elaborate on those who did not choose-----

Dr. Greg Mewett

Consistently throughout the past four and a half years in Victoria, of the patients who have been approved for VAD - that means they have gone through the process, have been issued a permit and may have even been prescribed medication which may have been dispensed - about 30% of those patients do not proceed with voluntary assisted dying for a range of reasons and the Deputy hinted at some of them. One is that they no longer feel the necessity to go through with it. They may be receiving the type of care they require or have changed their mind, as people have the right to do. We reiterate throughout the process that they have the ability to change their mind and not go through with it even after they have got the medication in the cupboard. The Deputy quite correctly said that many of these patients are highly comforted and some of their suffering is already relieved by having the medication in the locked box up in a cupboard. Many of them do not need to take it but they know that if they have reached the limits of their suffering, they have been approved, they have been consistent in their approach and they have got their medication there if they wish to take it.

Deputy Gino Kenny

When they have access to that medication, do they physically have that medication?

Dr. Greg Mewett

Yes.

Deputy Gino Kenny

In that situation where that person has the medication, do they have to notify a doctor or anybody about what is going to happen?

Dr. Greg Mewett

There are two scenarios as I said before. One is where patients self-administer in which case, they will have the medication delivered and dispensed to them by two pharmacists who go through the whole process. They can then either put it up the cupboard or decide to take it two hours later if that is their choice. They have a person who is called a contact person who has to contact the voluntary assisted dying review board if there is any leftover medication. They notify the doctor or the palliative care service when the person dies, as they would if someone died by any other means. There is also practitioner administration, where the actual medication is delivered and dispensed to the doctor who then arranges with the patient to administer.

Senator Lynn Ruane

I wish to put this on the record. When we went into private session Senator Mullen asked if there was agreement by the committee that we would not mention certain drugs. When we came back into public session, we did not confirm that that was not the actual case. The transcript should be consistent in terms of the conversation to reflect the break in the committee.

Senator Rónán Mullen

Correct.

Senator Lynn Ruane

I have two questions. It was stated that some people lost capacity to make a decision while going through the application process. Obviously, I am not a doctor, but it appears like losing capacity very quickly. Even if it is three, four, five or six weeks, in what scenario would somebody have capacity in week 1 and have lost capacity by week 3?

Dr. Greg Mewett

With a terminal illness, things can move very quickly. Let us take cancer for example. Many cancers can progress very quickly and as a result of complications of cancer or the cancer itself indeed, this affects the patient's cognitive ability. In other words, their brains fail along with the rest of their bodies. It can be affected by simple things like a urinary tract infection which does not recover, which can cause the brain to malfunction and not recover.

Senator Lynn Ruane

Dr. Mewett may have already answered this. For people who may have medication on their person, if they do not use it or there is leftover medication, is there a system in place whereby that medication is retrieved or disposed of?

Dr. Greg Mewett

Yes. Under the law there is a contact person who is usually the person's spouse or a relative. Under the law that contact person must notify or return the leftover or unused medication.

Senator Lynn Ruane

However, there is no way for it to be proactive at the other end. The physician knows who has been granted a permit and a licence. In terms of data collection, is it the case that nobody goes back to check whether somebody has used it or not?

Dr. Greg Mewett

The co-ordinating medical practitioner, the doctor who does most of the co-ordination of the case, knows when the patient has died. The family will let the doctor know the patient has died. That information is then provided to the voluntary assisted dying review board, which is the overarching control board. All the statistics and data are collected in that way. These patients have this medication in a locked box to which they have the key, usually in a cupboard somewhere safely just like when they are prescribed medication such as morphine or other potentially dangerous drugs, which need to be kept securely in their homes.

An Cathaoirleach

With Senator Ruane's permission I would like to bring in Mr. Gaffney if he wants to make a comment on this.

Mr. Michael Gaffney

I wish to reassure the committee that there are many safeguards in this legislation and that any scenario that might happen with the person and their medication is covered by the commission's role. We call the person the primary medical practitioner, the contact person. There are many safeguards in the Bill to ensure that the process of recovery of any leftover medication or medication that was not used is done in a legal way. I hear members' concerns. We also went through that same debate and discussion in both Houses of the Parliament to ensure that our system is as foolproof as it can be.

Senator Rónán Mullen

I wish to develop a few things that arose from my previous questions. In Dr. Mewett's article, which I referred to, he mentioned a friend who had the option of going to the local palliative care unit for palliative sedation, but he wanted to die at home. Some people might be worried about the knock-on effects of changing the law even to a limited degree but recognise that many of the issues around end of life relate to a fear of suffering. Palliative care specialists will talk about the reassurance they can bring to that situation. There can be levels of suicidality, for example in the early stages of a cancer diagnosis, which can dissipate or diminish over time. Could people be made more aware of palliative sedation, which can be and should be available at home? I know it does not address the autonomy, the absolute choice argument, but at least it addresses the fear some people have of suffering going beyond control and so on. Has Dr. Mewett any comment on that? I was struck by the article which suggested it was not available to his friend at home.

Dr. Greg Mewett

I take the Senator's point. Palliative sedation can be provided at home and we do provide that under certain circumstances depending on the care set-up. There are all sorts of factors as to whether a patient can stay at home. This would have required much more intensive nursing than his family, who were already suffering in their own way, were able to provide. One of his options was to go into the palliative care unit where he would be intensely nursed and given palliative sedation.

This man had his medication at home for five months before he decided he would take it. By the way, he was certainly not suicidal. He was a very close friend of mine and he was not suicidal. It is an option at home. Palliative sedation is commonly expounded. We use it a lot in palliative medicine because many patients near the end of life are not going to qualify for voluntary assisted dying for a range of reasons. Palliative sedation as a way of relieving intractable suffering near the end of life is a very valid option but that does not mean it is an alternative to voluntary assisted dying. It is in the minds of some people but in patients' minds the question is why a doctor would render them socially dead, in other words, unconscious for the next week, when they could render themselves completely dead in 15 minutes. I mean, this is-----

Senator Rónán Mullen

Dr. Mewett is in a jurisdiction that has only had this for four years. One of the issues people of good will, including those who might think in certain circumstances they can imagine cases where they would support a change in the law, are worried about is what it will look like in ten or 20 years' time. Even in Oregon where there is limited legislation, there have been big increases in the number of people who avail of it. There are issues around people feeling a burden and all that type of stuff. I was asking about it in the context of it being a compromise that addresses fears about suffering even if it does not, I admit, guarantee absolute autonomy and control. It might be a middle ground that would proceed from the fear there might be other victims of a change in the law down the line.

I have a question I will put first to Dr. Nitschke because I do not want to misrepresent him. It is his view that if somebody wants to end his or her life and if he or she is of age and has capacity, that should be the end of the matter and he or she should be assisted. Is that correct?

Dr. Philip Haig Nitschke

They should be given access to all the means they would require, in other words access to the best drugs.

Senator Rónán Mullen

Dr. Nitschke is not squeamish, therefore. I do not mean any disrespect to Dr. Mewett, but Dr. Nitschke does not have any issues about the terming of that as an assisted suicide. Is that correct?

Dr. Philip Haig Nitschke

I am sorry, will the Senator repeat the question?

Senator Rónán Mullen

Dr. Nitschke does not have any issue with terming that an assisted suicide, because clearly it could be a person who wants to end their life without there being any medical issue or other reason.

Dr. Philip Haig Nitschke

Yes, that is right. We see too many people who have got very good non-medical reasons for wanting to die and I would not try to interfere with that.

Senator Rónán Mullen

Okay. I thank Dr. Nitschke.

What is Dr. Mewett's view on whether there should ever be a limit to the request? For example, let us take it that a person has capacity. A person might have depression at various levels, he or she might have a severe disability he or she does not want to live with or he or she might have very unsupportive family or friends. All these things might feed into a fear or a desire to have such people's lives ended. There are medical professionals who say there is always a conversation that can be that can improve that situation and that should remain the focus, but what is Dr. Mewett's philosophical view of that claim? One of the issues we have to deal with is if it were to be conceded that in certain cases a person might have his or her life ended with the support of the state, subject to some medical threshold being reached, we are immediately into antidiscrimination arguments about the person with severe disability, the person who says his or her mental state is also a matter for him or her to judge and we interfere with such a person's autonomy and worse, we discriminate against him or her when we allow it for one category of person but not for another. What then is Dr. Mewett's philosophical view? He has told us Switzerland is an outlier but what is his view about whether there should be any limit to the claim?

Dr. Greg Mewett

Senator Mullen has obviously made a speech about his own views about this situation and-----

Senator Rónán Mullen

That would not be the first time, but that is allowed. Now Dr. Mewett can make his.

Dr. Greg Mewett

-----and he has not given me an opportunity to respond to a number of points he has made. I will just say that as a palliative care physician who has been deeply and completely involved in people's end-of-life care, my philosophical view is if a patient is going to die of an end-of-life illness then he or she should have a choice to bring about that death at an earlier stage when he or she has reached the limits of his or her suffering. I am not in a philosophical mindset to allow open slather, as Dr. Nitschke perhaps suggests. I work within a medical and legal framework that is working well in this state four and half years down the track. There has been no evidence of the slippery slope and runaway trains the Senator often talks about. That actually is an insult to-----

Senator Rónán Mullen

I did not claim it for Australia because the country only has it for a wet week.

Dr. Greg Mewett

Our four and a half years show the statistics. The Senator cherry-picked statistics from Oregon, which has had the legislation for well over 20 years. The Senator has asked for my view and I have given it. That is my view as a palliative care physician. I do not have an open slather view. I view it purely as an end-of-life issue.

Senator Rónán Mullen

I am sorry, what was the phrase Dr. Mewett just used?

Dr. Greg Mewett

I do not have open slather view. It means a carte blanche view. "Slather" is an Australian word.

Senator Rónán Mullen

I thank Dr. Mewett. I am trying to establish whether he would be opposed to it then in certain circumstances.

Dr. Greg Mewett

Yes.

Senator Rónán Mullen

I thank Dr. Mewett.

An Cathaoirleach

I thank the Senator. On my behalf and that of members and the secretariat, I thank most sincerely Dr. Nitschke, Dr. Mewett and Mr. Gaffney for their contributions. We really appreciate them taking time out of their busy schedules to be with us. It is very important to have this type of engagement. We are grateful and there was the time zone aspect as well. We are glad they were able to help us out with the job of work we have ahead of us.

The joint committee adjourned at 9.36 p.m. until 10.30 a.m. on Tuesday, 5 December 2023.