Legislative Council Tuesday 15 September, 2020
Ms FORREST (Murchison) - Mr President, this bill is one of the most challenging areas of public policy I have considered in my 15-plus years here, and we have had a few of those over the years. This is certainly not a criticism; it is a complex and fraught area of public policy. The consideration of euthanasia, however described, has been and will continue to be, a complex matter, as well as controversial. I have been personally challenged by this question -that is, euthanasia or voluntary assisted dying - more than once in my time here.
When I say I can equally argue for and against the principle of this bill, it is not as though it is not from a position of equivocation. I have felt the enormous weight of responsibility that such an important decision on this serious matter of life and death carries. I have found the scrutiny exhausting. Sadly, I believe much of the public debate on this matter has been driven by fear - fear of our own mortality and inevitable death, fear of unrelieved pain, fear of unmitigated personal suffering, fear of existential suffering, fear of witnessing the suffering and pain of a loved one. These fears are not irrational. In the bill before us we are seeking to treat an ethical matter as a practical matter and this is difficult indeed. Ethical considerations are not religious considerations. It is essential to separate the two and if we are to have an open, meaningful, frank and respectful debate about such an important existential matter we have to separate the two and set them aside.
Unfortunately, due to the circumstances beyond my control, we are presented with this bill at a time the world is facing a very challenging time. We are all very aware of the current and ongoing crisis in our aged care sector. This is not new and is still subject to an ongoing royal commission established by the Morrison government.
In addition, our country and state continue to deal with the ongoing challenge of the COVID-19 pandemic. Sadly, we are still seeing a challenging and tragic number of people succumbing to this lethal virus - I must say it was with enormous relief I saw that no more Victorians had died yesterday in the last 24 hours. It has been a shocking time for Victoria but we had our turn here, and we had 12 out of 13 deaths in Tasmania on the north-west coast and that has kept me particularly busy during that period.
Mr President, my role as the local member in north-west Tasmania, along with others but in my area of the north-west, the heart of the Tasmanian COVID-19 outbreak - the 'COVID-19 capital' we were called - and the effort required to support my constituents and my work with the Subordinate Legislation and Public Accounts committees as well as other work that we all undertake, has been all-consuming over recent weeks and months. My personal workload has been extraordinary over the past six months and has left me with what I consider to be limited time to fully consider this bill as it has been developed but also not being able to attend any of the community engagement meetings arranged by the member for Mersey due to other parliamentary committees and other duties. Even though I had intended to do so, I could not. Parliament was still calling me at that time.
Despite my own personal challenges, I commend the member for Mersey for his work on this bill and of course the work of the Office of Parliamentary Counsel; I appreciate what a large and significant task this bill is.
I have studied the tabled version of the bill since it was provided. As you can see my copy is as filthy and dirty as any you will ever see, because I thumbed through it, backwards and forwards, and tried to link it all together. I have many questions about a number of the provisions in the bill. These questions are better dealt with in the Committee stage of the bill rather than the bill's second reading contribution, assuming that the bill is supported into that phase.
I have also sought a number of amendments; I apologise to members for these not being circulated, but they have not been finalised to date. As members would be aware, Robyn Webb who is doing all the work on this bill and other legislation is extraordinarily busy and doing her best to fit it in. I will circulate my proposed amendment as soon as they are available, but they are not and I do apologise, even though I have been doing this for two or three weeks now. It is not a criticism of the OPC. It is a reality we are facing.
Mrs Hiscutt - No, it's the thorough work you are doing.
Ms FORREST - And a reason not to try to rush this.
I will use this opportunity to speak broadly on the principle of this bill and leave the detailed scrutiny of the 144 clauses of the bill until the Committee stage.
I note there is broad community support for the opportunity to have a range of options or choices as we face the end of our lives where this is not a sudden or unexpected death. One choice not currently available to Tasmanians is active voluntary assisted dying or VAD. This bill seeks to introduce VAD as a choice through a proactive measure and as a medical treatment. I know from conversations with many people over the years related to the question of end-of-life choices many people conflate the concept of euthanasia or VAD, however described, with other aspects of end-of-life care that are current rights we all have, including the right to refuse treatment, or to have futile or overly onerous treatment withdrawn. Then you have conversations within the community. You can see that is clearly the case. Some people conflate them together and see them as one issue.
Withdrawal of futile treatment and the right to refuse treatment is everybody's right, and there are different healthcare approaches that are evidence-based and considered in consultation with the patient and their family, or the family of the patient if the patient has lost capacity to participate - that is, they are unconscious or they are on life support and are unable to participate through brain damage, or whatever.
I believe we really do not practise the options of a refusal of medical treatment and withdrawal of treatment well, much of the time, and some of the reasons account for people's experiences of death and dying. That is the case. Of course, this can be the result of pressure on medical practitioners to do all they can to treat the person or their loved one rather than let the person die when they are actually trying really hard to do that, and that is what they are wanting to do.
We do see this conflict at times with loved ones urging, and almost demanding, medical treatment for a loved one when the person themselves - the patient themselves - may not really want that.
I also believe that many in society do not know what death and dying really looks like. I want you to think about that. Do you really know what death and dying looks like? Do you have one experience of death and dying, and then is that what your view of death and dying is? Not many of us, thankfully, have lots of experiences of death and dying.
I say thankfully, because dying is not pretty. It can be quite messy. It is always sad, even when it is someone who is dying from a terminal illness after a long time of illness. You only have to see the messages sent to people after a long illness and the person dies. It is still sad. That person is still someone's mother or father or brother or sister. They still have loved ones who are left behind. It is always sad.
Furthermore, our beliefs and understanding of the dying process are often clouded by our own fears. I think we need to be alert to our fears and acknowledge our own fears. We all have them. We are reluctant to speak about our own mortality generally, and really consider and discuss this with our loved ones. We often are reluctant to tell them what we want them to know about our own death in specific rather than general terms.
Talking in specific terms about what do you want in terms of treatment in certain circumstances? What do you want your funeral to look like? Who do you want there? What sort of coffin do you want? What sort of burial do you want?
None of us really likes talking about that, but we should.
We have heard and received many accounts of death and dying from relatives of those who have died. So many deaths have been described as horrendous and full of unrelieved pain and suffering. If we really are seeing such a high number of deaths in Tasmania where pain and suffering are not well managed or relieved, we actually need an inquiry into this.
It would suggest a complete failure of our health system if so many people are dying difficult, horrendous, painful deaths full of suffering, because the evidence I have from the medical profession - and being one of them myself - is that there are very few cases where pain and suffering, whatever the suffering is, cannot be mitigated. Yes, there are some, but if this is almost a daily occurrence, which has been portrayed by some as being the way it is, that is either a gross misrepresentation, or our health system is completely stuffed.
If our health service is so deficient in the area of the relief of pain and suffering during the end-of-life experience of a person, this is a disgrace and it must be addressed, regardless of the outcome of this bill.
I was unable to find actual evidence of the extent of deaths occurring with such great suffering. Therefore, we must ensure research and investigation of these deaths that do involve great suffering and unmitigated pain, that they are researched and fully investigated to ensure that we do better. We must do better than this. We can do better than this, especially for those of us who, for their own reasons, do not wish to choose voluntary assisted dying. There are plenty of people who will choose not to participate. It is voluntary. For many people, for whatever reason, it might be a personal reason unrelated to religion, unrelated to the deaths of other family members, but a personal reason. We need to assure those people that they will not be subject to a death of long suffering and great pain because that is what our system provides for at the moment. If these things are happening, they need to be investigated and they need to be addressed.
The community engagement the member for Mersey has undertaken has been extensive, visiting every Tasmanian local government area as well as travelling overseas and to the mainland of Australia to meet with those engaged in this area and to look at how these jurisdictions implemented and now operate under their legislative arrangements.
This bill deeply engages two broad parties in its application: those Tasmanians seeking to end their life through voluntary assisted dying and the health professionals who choose to participate in the process. It seems to me from my consultation there has been broad community consultation, not just by the member for Mersey, but more broadly through polls and community engagement, surveys; however, I am not confident there has been full and open consultation with the medical health professionals and their representative bodies which are key to this bill's operation.
I know the member for Mersey listed the bodies he has consulted with in the development of this bill and, yes, I agree there has been some consultation, but many of the concerns I am hearing around certain aspects of this legislation relate much more to the role of the health professionals, doctors and nurses who will be involved in this. Even the College of Nursing as a professional body of nurses. The ANMF is the industrial body, the union, which has an important role, but the college also has a very important role as the professional body. They have not been consulted and they have concerns about some of the aspects of the engagement of nurses in this bill as it is framed.
Some of my amendments, and I know others are being proposed, may address some of these concerns. I appreciate how challenging this is as within every professional body there will be differing views. On a matter of such complexity and controversy with all the ethical questions and underlying personal beliefs and experiences within these bodies, whether it be the AMA, the ANMF, the College of Nursing, the College of Physicians, the College of GPs, whichever body it is, achieving a consensus position is difficult, if not impossible.
The statements put out by the relevant colleges are fairly bland and fairly non-committal because they represent all their members who have very differing views. We need to listen to those who support the principle but are concerned about the process. This reality should not be an unsurmountable barrier, but it will take some time and is crucial to the success or otherwise of this significant change in this area to get this right.
Consultation with these bodies is vital and must be central as this debate is not only about the person's right to choose the timing of their death when they have a terminal illness and the choices around their care when they are approaching their death, it is also about those who provide care for those people at that time.
We all face death, either suddenly or unexpectedly or with some time, be it lengthy or short, to contemplate our mortality and ultimately our death. None of us will escape it. This bill is not only about a person's right to choose this time. Importantly, it is also about whether, when, and how doctors and other health professionals, including nurses and pharmacists should, in certain circumstances, be able to assist that person's death ahead of such time at which they would die without such intervention. We must be honest with ourselves and those who we represent here as this is about actively bringing forward the time of death. Yes, we understand the people who will access this are facing death as a result of their medical condition. This bill will enable the time of their death to be sooner than it would occur without voluntary assisted dying. My consultation around this matter and this bill have made it clear to me that support for the principle relates to the relieving of intolerable suffering at the time when a person is actively dying, not months before the likely death of a person.
I can say that universally with the people I have spoken to in my electorate, that is what they perceive this to be - support of the principle of relieving the suffering of someone who is actively dying. Many I talk to in my community and beyond support the principle as they personally do not wish to endure unmitigated suffering and pain or loss of physical control of their bodies. They also worry that having to care for a loved one experiencing such pain or suffering.
Suffering and pain is a unique and individual experience, and I suggest it is almost impossible for another person to predict or describe their own experience as it is also impossible to accurately describe the anticipated or expected personal experience of suffering of another person. I have witnessed much severe and very difficult to control or manage pain and suffering. It is, of course, easier to cope as the person experiencing such suffering of pain if you know that the time is limited. It is easier to cope if you know that it is not going to go on and on with no obvious end point, even when you are not sure exactly when that time is but you know there is going to be an end to it.
Most of us will do whatever we personally need to stop pain and suffering if we find it too much. Most of us are not averse to reaching for the Panadol if we have a headache, same principle. Think about the use of torture and why it is used, an abhorrent practice, but also think about childbirth. As a midwife I have witnessed what other observers, such as partners, see as unmitigated pain and suffering and often out of the partner's distress rather than the woman in labour, seek pain relief or an end to the suffering for their partner. I do not know if any of you dads have been in that situation where you just wanted to make the labour pain go away, to stop it. Plenty of them have, as the member for Huon would be aware.
The woman herself may refuse the pain relief and then afterwards state, 'Yes, it was painful but I was not suffering, I was fine', but from the outsider observers' point of view it looks like extraordinary suffering. We should not presume to know how anyone else will experience pain or suffering personally. The opposite is also true - what we think would not normally cause pain and suffering may often, because of factors unknown to observers, cause extraordinary suffering. For example, the experience of a labouring woman may be more painful and causing significant suffering much greater than their own experience or perceptions would expect. We always need to believe the patient, believe what the woman is telling you.
I note and accept that access to a participation in the end-of-life choice in this bill is voluntary, and this is absolutely crucial, as is protection for those patients who do wish to utilise this option and those medical professionals who do not wish to be directly involved. Equally as important is legal and professional protection for those who wish to participate or access this choice. It is very difficult for members of the health profession who do not wish to actively participate to distance themselves. Almost all health professionals, particularly GPs and nurses, deal with and provide care to the dying and terminally ill patient regularly. Even though they may object to the principle of the bill, they cannot totally avoid it should it become law.
We also know that directly engaged medical and nursing staff are impacted psychologically through their participation, as evidenced in other jurisdictions, some more than others. I know from engagement with some involved in the care of these patients that some of them experience extreme sadness and distress even though they support the principle and have consciously agreed to be involved. We must be aware of this, and ensure adequate and appropriate support of these professionals is available if this bill is to proceed.
In a recent article written for the Australian Medical Journal by Associate Professor Odette Spruijt, founder and chair of Australasian Palliative Link International, and a palliative care specialist working in Victoria - and a conscientious objector to VAD - she stated -
As a palliative care specialist with over 25 years of practice, mostly in Victoria, I have found the institution of the Victorian law to have a devastating effect on my practice of palliative medicine. I have witnessed the devastating impact of this law on the cohesion of teams, on the relationships within clinical units, and as a cause of deep moral distress among many of my medical colleagues, for whom this law, and its accompanying narrative, is anathema to the very core of our sense of what it is to be a doctor.
Mr President, Associate Professor Spruijt does not speak of these concerns from a religious viewpoint. She speaks as a health professional working in the field, and it is her observation, her experience as to what has happened.
These comments beg the question: At what point does a patient's doctor - especially their GP, or specialist in this case - who may have a conscientious objection, and have cared for the patient for many years, become uninvolved? Could they be seen as seeking to convince a patient not to go ahead with VAD after discussing it with them?
Much of this debate has been and will be framed around the notion of personal and individual choice. We cannot overlook the fact that humans are relational. We are not like animals in this sense. Associate Professor Spruijt states this reality clearly in the article I referred to previously. She said -
It is not enough to talk about patient choice as if autonomy means 'only me'. Autonomy is also relative, we are relational beings, we depend on each other, and what we do affects each other.
There are many multitudes of influences and relationships in our lives, as we do not live fully autonomous in a fully autonomous state. Many GPs, oncologists, palliative care specialists and other physicians care for the dying patient as part of their ongoing management of the patient's medical condition.
We have been helping people die for centuries. This is not new, we do it every day.
Sometimes, I believe we health professionals try too hard to stop people dying, who are essentially trying really hard to do just that - to die, and they just want to be let go. Sometimes, I think, as I mentioned earlier, it is at the request of family members.
I believe there must be a much greater focus, education and support for assisting those who are actively dying, allowing them to die when they have made it clear that this is what they want. I know many see this as assisted dying, and in technical terms it is. It is when we do not actively intervene, but let nature take its course - that is, assisting dying at the time that the person would die without the treatment.
I am not talking about the circumstances where narcotic analgesia is increased at a rate that appears to hasten death - though there is some evidence now that suggests this impact is less significant than has been suggested because this treatment is generally appropriate pain and symptom management. These days, narcotics are often not the primary method of pain relief because of the rebound effect they can cause, actually increasing pain as opposed to relieving pain.
Regardless of the outcome of this debate, I believe we urgently need to have a meaningful and thorough review into the process available to people to understand their capacity to have a say in what they want when facing the end of their life.
An understanding that having an advanced directive in place, and a responsible person or enduring guardian in place, is as important as having a will.
This actually requires legislative change itself, as identified by the Tasmania Law Reform Institute in recommendation 5 of its review into the Tasmanian Guardianship and Administration Act, which outlines the need for a legislative framework for advanced care directives. I hope the Government will actually take that up and get on with that. Regardless of what happens with this bill, that is necessary. It is a really important aspect to this whole care of dying people, or people facing their loss of capacity if they have an enduring guardian.
Advanced care directives must be legitimised and respected. There is still work to do in this space. We need to ensure the competence of all health professionals in the understanding of and being able to deliver or refer to effective and appropriate palliative care when indicated well before a patient's condition deteriorates to the point where the Tasmanian patient would think the only thing left for them is to ask for direct treatment to bring about their death. If we get to that point, we really have lost the plot.
Thank goodness we are not the United States - for lots of reasons at the moment - but I understand that in some parts of the United States, you must have only six months to live before you can actually access publicly funded palliative care.
Palliative care should be accessed right from the beginning of a patient's journey when their chance at life, their life expectancy, has a finite sort of expectation about it. Palliative is not for when you are actually on your last week of living. It should be months leading into the care of a person. It is not the last minute. It is not the last thing you do when there is nothing else you can do. Palliative care must start and be available well before that point if you understand what palliative care really is.
I believe we are all well aware that palliative care is not a miracle solution for all patients, a point acknowledged by Associate Professor Spruijt, a palliative care physician herself, and in the article I referred to previously she wrote -
I am very aware that many doctors have reconciled the law on the basis of patient choice. I am also very aware that palliative care is not a panacea for all suffering. That would be a ridiculous claim especially since the majority of people who access voluntary assisted dying (VAD) worldwide do so not for the relief of physical suffering but rather because of the loss of ability to engage in meaningful life activities, 82% in Canadian cases of assisted suicide -
She is actually quoting a report which I will go to in a moment -
Loneliness 13.7%, and concern about causing burden to those they love, 34% were also prominent in the list of reasons for requesting assisted suicide in this Canadian report.
Such suffering is not within the realm of medical practice alone to alleviate but calls for an examination of what we as a society understand is a life worth living, with honouring and living.
When I read that article, I thought I should actually go and reference the source document to see what it actually said to understand the outcomes and the use of the Canadian model.
The Medical Assistance in Dying in Canada 2019 report stated, and this is a direct quote from the report -
When asked to describe the nature of the suffering prompting their request patients most often reported 'a loss of ability to engage in meaningful life activities'
Most patients reported that -
followed by 'loss of ability to perform activities of daily living' reported in 82.9% and 78.1% of cases respectively.
These findings record the patient's own reasons for requesting medical assistance in dying and personal experience of suffering, not the doctor's record. It is what the patients themselves said.
Being perceived a burden on family, friends or caregivers accounted for 34 per cent and loneliness and isolation accounted for 13.7 per cent of the nature of suffering of those who requested and accessed medical assisted dying in Canada.
This is a sad indictment on our societies. We must do better to support those who are older and have life-limiting illnesses and risk social isolation or feeling they are a burden to family or society generally.
Many of us would have received an email from a Tasmanian with a personal experience of medical assisted dying in Canada, and I will refer just briefly to parts of his email.
In noting this person's experience, I also acknowledge and respect other accounts where pain and suffering could not be relieved. These have been provided by the member for Mersey in a bound volume of a number of stories relating to those and others over the general period of consultation. I am sure everyone's emails inbox has been the same as mine. It is about 50:50 for and against. There are stories on both sides.
It is interesting that it is about 50:50. I think people who support it perhaps do not send emails as often as those who oppose it. I do not know; if you go by the public sentiment surveys, I believe you must listen to alternative views on this, not just focus on the ones that support a view we may hold ourselves.
Mr Chris Reynier described the death of his sister in Canada from inoperable pancreatic cancer. If you do not know about pancreatic cancer, it is pretty much a death sentence. There are some positive treatments being progressed at the moment, but ultimately most patients only have six months to live and it is very aggressive and not a pleasant experience. His sister had inoperable pancreatic cancer. You cannot take your pancreas out. You need it. His sister was diagnosed in July 2018 and died in a hospice in January 2019. His sister had commenced the MAiD process; however, she did not elect to go through this option in the end. With regard to his sister's experience, Chris stated, and this is words -
Since 2016, Medical Assistance in Dying (MAiD) has been legal in Canada. On the surface, it appears there are more safeguards in Canada than are being proposed here in Tasmania. However, my direct experience is that it is a very flawed and dangerous system. I witnessed overt and covert coercion. I witnessed very little rigour in adhering to the medical assessment process. I witnessed a disregard of any cooling off period.
He stated that pro-MAiD advocates -
actively championed MAiD and openly discouraged others from ‘trying to talk her out of it’
‘The decision was made and should be respected’, was their view.
There was no consideration given to the fact that not everyone was necessarily comfortable with the decision. Individuals felt coerced into silence for fear of appearing disloyal to Judy [his sister]
It is important to note that I do not necessarily accept family members should be able to override a patient's informed, clearly made and articulated decisions, whether it be organ donation, the fear of medical treatment or if this bill becomes law, override or seek to coerce a patient from a decision made with capacity. Coercion in either direction is unacceptable. Death can be experienced as a huge relief and an end to intolerable suffering, and it can also be sudden, unexpected and shocking. Either way the family and friends are impacted and they are part of the person's dying experience.
You could argue it was the patient's choice and no-one should try to talk anyone out of a freely made decision. However, death does have a direct and significant effect on family members. It is important the family is involved in this. I go back to my earlier point - have these discussions with your family, tell them what you want. I am an enduring guardian for my parents and we have had the discussions. I do not want mum and dad to die, but I know ultimately they are not going to be here forever. Dad is in his 90s and mum is in her 80s. I am lucky to have had them for as long as I have.
Mrs Hiscutt - The old farming saying is where there is live ones, there are dead ones.
Ms FORREST - Mr Reynier expressed concern regarding the process around the experience of his sister's death a bit further. He wrote -
There was no consideration of consulting with the family or wanting to listen or hear the family’s views.
If that is the case, it is sad. If the family is there, they have to be included in this decision making. I do not agree they should be able to override the person's decision if it is made with the full capacity, but you need to include the family.
There was no attempt to discuss the option of a natural death in the hospice v the MAiD option.
There was an almost zealous urgency to ‘get it done by Friday’ based on an assumed belief that it needed to be done to fit in with the timing of my visit
Imagine the pressure he was put under at that point -
MAiD advocates were all too ready to assume that a practising Catholic -
which he is I am informed by his email -
will automatically be opposed to MAiD with the inference that anything you have to say can be dismissed or disregarded as ‘well you would say that wouldn’t you’. This was highly disrespectful but as importantly simply an assumption.
That is what I said at the outset. We have to separate religion from this. The member for Mersey in his contribution talked about a recent survey in Queensland that included a number of religious people or people who identified as Anglican, Catholic and Presbyterian that had well over 50 per cent support for the principle. We have to move away from this. If this was this man's experience, that is pretty tragic. He travelled all the way from Australia to Canada to be with his sister and this was his experience. I can understand why he is concerned about overt and covert coercion. He went on to describe his observations of the overt and covert pressure, which even bordered on coercion.
As I have said, I believe coercion at any level in such important matters should be condemned. He noted that his sister changed her decision to have her life ended that Friday after he told her he was very uncomfortable and not happy that his arrival to see her had been touted as the event that determined the date of her death. That is pretty unfortunate. He said her GP had talked through - he must have had some influence in asking her GP to come and talk to her - how the hospice would care for her through to the time she died naturally in probably no more than four weeks time. So she was imminently facing death at that time. She subsequently died in the hospice, peacefully and naturally a little under four weeks later.
Some may see this story as an example of family members pressuring their loved ones to choose another option and that maybe there was coercion here from the family. There certainly seemed to be some pressure from the medical professionals or others who were providing advice. I cannot assess this myself personally; obviously it is a personal experience I am relating. But my comments stand: coercion at any level is to be condemned.
Mr Reynier went on to state that during the four weeks after the decision not to proceed with MAiD, after his sister made that decision -
She was calmer and less anxious.
She enjoyed innumerable visits from friends and had periods of lucidity in which they were able to converse and reminisce.
She had two more visits from siblings from the UK that wished to say goodbye to her. (This would have been denied to Judy and her siblings if her life had been terminated on 14th December).
Since July she had been looking for answers to what she really believed about life after death. She had discussions with a number of different people, both religious and non-religious. During that time, she moved from not wanting a religious funeral service to wanting a religious funeral service. This decision was confirmed after 14th December.
This is just one account, and I am not going to go into any other stories. I wanted to raise this to make us really aware that this is a very complex area and we need to be very sure that what we bring into this place deals with some of these really difficult challenges. There are also the side issues of advanced care directives and the need to have those legislated. As I said, I hope the Government will pursue that.
This is one account and a personal experience that I believe is important to share to ensure the bill has adequate protections for patients seeking this option or the person, as referred to in this bill, and the health professionals caring for them. It also highlights the need for close engagement with family members.
It also highlights the fact that patients need time to fully consider the full range of options available to them and clear advice they can change their mind at any time. It also highlights the importance of having end-of-life discussions with our loved ones well before these difficult conversations become urgent. It is really hard to have these rational discussions in the middle of an emotional time; anyone who has been there would know how difficult it is.
I remember having to say goodbye to my dad when I went overseas for six weeks a few years ago, 2013, when he had a heart attack the day I was leaving. He was in Launceston General Hospital. Thankfully I was flying out of Launceston; I went and saw him. They let me in; I was not supposed to be allowed in but I said, 'I have to see my dad.'. I had to say goodbye to him because I was getting on a plane for 44 hours - no communication - and he could have been dead by the time I got to the other side of the world. We did; it was pretty sad and pretty tough, but he is still with us. He told me I was not allowed to come back if anything happened while I was away and I said, 'You will be dead, dad, you will not know what I do'. I am very lucky he is still with us.
None of us really wants to openly face our own mortality, as I said, but we need to talk about death and our wishes with our loved ones to avoid misunderstandings at such a crucial time.
Regardless of our own personal views on this matter, life is complex and death is inevitable. The experience of entering and leaving this world are influenced by our culture and societal structures; both are fundamental. These events are not trivial, nor are they insignificant. Families and societies are involved with and are impacted by these most significant life events. The intervening period is unique to the individual and shaped by many influences and circumstances.
Suffering is a part of the lived experiences of all people. Suffering takes many forms, and life is precious. Some suffering, however personally experienced, can be extremely difficult, if not impossible, to relieve. Ask any new parent of a baby who does not sleep whether they are suffering. Of course they are. Sleep deprivation is a form of torture intended to cause suffering. Ask all those people in Victoria whether they are suffering at the moment. Is my family suffering over there? Yes. Different sorts of suffering. At this time in the COVID-19 pandemic, many parents are suffering sleep deprivation, and they cannot seek direct assistance from families from interstate or overseas, or even in the next suburb.
Our duty here is to ensure, as much as possible, that if this end-of-life option is to be legislated, these very real and important matters are addressed. It is also an important task to ensure a framework to assist those facing imminent death and unmitigated suffering, whilst ensuring effective, appropriate and robust protections, is in place to support those individuals seeking this option and those who are called on to assist.
Regardless of the outcome of this bill, we must ensure greater access to, and awareness of, quality palliative care. We need to understand and appreciate all forms of suffering, and how we must care for and assess the whole person. We must do more to support and respect advanced care directives where they are made without the legislative framework, until we can get one.
I absolutely accept and acknowledge that as humans, the vast majority of us, myself included, try to avoid pain and suffering. There are very few, if any, individuals who would welcome any form of physical suffering or mental anguish. We really do have a responsibility as a community, not only to seek to relieve physical pain of those who request this, but also to find ways to mitigate - or if possible avoid - the suffering that occurs for those who lose their ability to fully engage in life activities, or people concerned they are a burden to families and are just waiting to die.
The COVID-19 pandemic has forced us to confront and appreciate the way we as humans interact with others, and the importance of community.
I have spoken before in debates early in the year about some of the positives we have seen, as well as the negatives of COVID-19 , the forced lockdown and the subsequent social isolation we have faced during this period - and as I said, many Victorians are still facing.
I think we have all celebrated many of the creative ways we have engaged with family, friends, neighbours and other elderly and vulnerable members of our community. Our elderly family members now have video chats with their children, grandchildren and great-grandchildren, in ways and with a frequency we have not done so before. That is a really positive thing. We have seen young people actively reaching out to older community members and those impacted by the isolation of physical distancing rules, and I believe we have recognised more clearly the importance of community caring. These same actions and engagements can transform the suffering of many people approaching the end of life, facing isolation, loss and grief, dependence on others and physical frailty.
We have also seen the tragedy of not being able to be with our loved ones who are dying, particularly those with COVID-19 infections - at a time when we most always have a loved one at our side.
We have seen the anguish of aged care residents and families being separated and not able to visit or provide care, being physically separated from their loved ones for months, and then we saw the unmitigated disaster that occurred in aged care facilities in Victoria, and some in New South Wales earlier in the pandemic.
This separation has not only occurred when there have been outbreaks, as we have seen in Victoria and New South Wales, but also here in Tasmania, when we could not visit our elderly loved ones in residential aged care, because we needed to keep some of our most vulnerable citizens safe from infection as we have seen the devastating impact COVID-19 has had for elderly members of our community. That isolation is particularly devastating for some older people.
I respect and acknowledge the views of those who are opposed to the principle of this legislation based on their religious views. I do not share those views, particularly much of what is written about regarding the perceived benefits of suffering and God's will.
I approach this bill, this topic and this principle from a humanistic viewpoint. I approach it with principles including universal human dignity, individual freedom, compassion and empathy to guide my decision-making in ethical matters such as this, but also in my former work as a nurse and midwife and my work here as a parliamentarian.
I know there are those who seek to focus on what is referred to as a slippery slope. This language is unhelpful in my view. However, the attitudinal change that can occur where protections are gradually removed as normalisation of these practices, instilling desires to remove barriers to more and more people who may consider assistance to die, does need to be considered as part of this debate, not as a barrier to the bill's progress, but as a means to ensure we do not overlook the risks of such significant change. We also need to ensure those health professionals who exercise their right not to participate have their views respected. It is not simply about religion as some seem to suggest.
Doctors Waran and William are both specialists in palliative care - a relatively new discipline in many respects because it has only been recognised as a speciality since 1998 - worried about conscientious objection and the risk of moral injury to those working in areas where conscientious objection may be a factor.
They also wrote a recent article in the Medical Journal of Australia where they stated -
… moral injury was defined as 'perpetrating, failing to prevent, bearing witness to, or learning about acts that transgress deeply held moral beliefs and expectations'.
Health care professionals are subject to moral injury as a result of 'being unable to provide high-quality care and healing in the context of health care'. In this context, conscientious objection becomes integral to the psychological safety of health care workforce as voluntary assisted dying is introduced into mainstream medicine.
It is really important we ensure that care and support are available for medical practitioners and others who may participate should this bill become law.
Obviously, health professionals also suffer moral injury when the health system is at the point where they cannot provide the care people need too, and you do not have to look too far to see how devastating this is when we are having a health crisis in any situation. You would not have to read much online to understand how terribly difficult it has been for some of the health professionals working in Italy, the US and other countries where COVID-19 has been completely out of control to have to decide who they treat and who they do not.
You cannot imagine what that is like if you have not been in that position. How do you decide? That is moral injury.
Professor Spruijt is a professor directly engaged in the care of dying patients and does not wish to be involved. She said -
I experience it in my new hesitation to invite open discussion about end-of-life care wishes, for fear that this interpreted as an invitation to discuss VAD, with which I cannot engage. Previously, this discussion took place in a secure space of 'even if I (the patient) wished for this, I know you (the doctor) cannot do it and will do all you can to help relieve my suffering', whereas now there is uncertainty as to what I am saying or meaning and what the patient is saying. The elephant in the room is now enormous and … those of us who express a different response to end-of-life suffering are berated as obstructing the patient's free choice.
This is the lived experience of someone who is a conscientious objector working in the space where VAD is legal. We need to be very conscious of this and make sure there are really clear processes and part of that will come back to the training provided to those who do participate. Make no mistake, there will be an impact on people who choose not to participate as well as those who do.
Berating those with a conscious objection is a very unhelpful response to those who support the principle. Respect for each person's view on this matter is paramount. As Professor Spruijt also stated -
How can I be sure that my exhaustion, my anxiety, my discouragement, my fear of my own mortality, as well as my value system and the limitations of my knowledge are not adversely influencing this patient in their decision making?
It is not a simple thing we have to consider. There are huge ramifications for those involved, the medical professionals, regardless of whether they support the principle or not. I do not believe any engagement between a doctor and their patient can be entirely impartial and the doctor's own beliefs, values and experiences will have no bearing on the interaction or the patient. It is impossible because I know as a nurse and a midwife that you have to be aware of your own thoughts and feelings and be careful not to try to express those more forthrightly to a patient.
We all know the high regard with which the medical profession is held - not so politicians. The high regard that medical professionals are held in has been even more evident during the COVID-19 pandemic as so many health professionals have risked their own health and welfare, and that of their own families, to save the lives of many Australians, many of whom were elderly and vulnerable. Sadly, many of those elderly people have died. This has taken a huge physical and psychological toll on many.
The trust in our health professions is the highest of all professions. We know that politicians are well down that list.
There are many who genuinely and rightly question what the impact of that voluntary assisted dying will be on this trust. This is why we must not rush this scrutiny. We must engage fully with health professionals in completing the process. An article in The Age published on 18 June 2020 noted that a relatively low number of doctors, particularly specialists, have undertaken the mandatory training for VAD. This article included a call urging the Victorian Government to embark on an education program in order to attract more doctors to complete the training. If this is a problem or barrier in Victoria, we can assume it will probably be a problem here to.
It also made me question why this may be the case. It seems doctors who are supportive of VAD are more than willing to come forward and publicly state their support. Other doctors are less forthcoming or willing to publicly state their reservations. I am informed this is from fear of organisational rebuke, the emotional toll of taking a public stand against VAD and the time it takes them away from providing care for their patients.
The role of health professionals in this bill is central and critical. I am not confident there has been adequate consultation with the professions in the formation and drafting of the bill. I am happy to be corrected on that but I have direct emails from some of these organisations that suggest otherwise.
I have attempted to consult as broadly as I can in the time I have had available to consult with a range of medical professionals: those who support the principle of this bill and would engage with it and those who are opposed to the principle, including some who are not opposed to the principle but do not want to participate. It is a broad range - both those in support and those opposed agree that the bill as it stands does not adequately address the genuine and legitimate concerns they hold, including those who support the principle. They have ongoing concerns around some of the process.
Some concerns I raised I believe have been addressed. Some, in my view, will need further consideration in the Committee stage, which will be challenging in itself because it is a complex bill to try to amend in many respects. There may need to be broader and further consultation before we can proceed much beyond the second reading of this bill.
The medical practitioners who do support the principle are adamant that the bill needs to be robust and workable for it to be accepted, and I agree. I have met with a number of medical professionals, some who have retired, who support the principle and would participate if they were still in practice but see flaws in the current arrangements of the bill as it stands.
I also ask: If this legislation is supported by both Houses, what measures will be put in place to support health workers who will be impacted by this? Will the Government provide adequate resourcing to make this work, both for those who participate and those who do not? I am not sure the member for Mersey can answer this question, but it does need a response and I hope the Leader may be able to give some indication about this, even though I appreciate it is not a government bill. I am not sure what the Leader's personal position is on the bill.
If this is passed, the Government will be called upon to implement and put in all the processes that are necessary to make it work. For example, in Victoria a fund has been established that provides funds to enable pharmacists to travel to every patient prescribing a VAD substance, enabling them to consult with the patient, as required. Victoria's population is much more concentrated than ours, but there is still a lot that is rural and regional. The pharmacist, as I understand, still travels to those places and that is a state-funded initiative - not a Commonwealth Government commitment like a Medicare payment, it is a state government funded thing. Obviously, it does not fit under Medicare so the state has stepped up.
I am not sure what discussions the member for Mersey has had with the Government regarding this. I will be keen to hear his reply on what discussions he has had with the Government about implementation and process that will need to occur to make this work.
This bill calls for the establishment of and support for a commissioner and that will also require some adequate resourcing to make it work as intended. That is another area I would be interested to know whether the Government is keen to adequately resource. If it becomes law, it is going to have to - I do not deny that - but it is important there is some sort of commitment from the Government on this.
The structure regarding the role of the commissioner needs some amendment to create greater rigour and I will address that when we get into the Committee stage, if we do.
It grieves me greatly when I hear and read some proponents of such legislation as this suggesting the only way to achieve a dignified death is through voluntary assisted dying. That is so far from the truth, it is ridiculous. Of course, voluntary assisted dying is just that - voluntary and no-one is or should be forced or coerced into choosing this.
I also acknowledge that in the absence of this option, there will be some who will sadly, tragically and often violently end their life through suicide, and that is not okay either - a terrible, tragic and extremely sad outcome for the person, their family, their healthcare providers and our society generally. We have a duty to care for people at their point of need.
We, as legislators, regardless of our personal views on the principle must ensure that if the majority support the principle, as indicated in the polls of the general public, and the parliament agrees, my job is to ensure it is legally, ethically, practically and legislatively sound.
I will listen to all contributions on this bill. As we all have a conscience vote on this bill, I look forward to all members' contributions.
If the second reading is supported, I will raise areas of concerns and the areas I believe need clarification as to their intent and effect, including amendments in the Committee stage.