Voluntary Assisted Dying Bill

Ms ARMITAGE (Launceston) -

Ms ARMITAGE (Launceston) - Mr President, I commend the member for Mersey for all the work he has done on this bill and the commitment he has made to voluntary assisted dying. This has taken a huge toll on him, and I am sure also on his wife, with the time he has put in and that was evidenced by his emotional contribution this afternoon.

We are about to consider a bill that has garnered much debate with members, receiving a larger number of inquiries and submissions than usual, the vast majority of which are well articulated, well reasoned and impassioned. I am, of course, referring to the End-of-Life Choices (Voluntary Assisted Dying) Bill 2020. I read every email and letter sent, whether in favour or against, and I continue to have discussions with constituents, members of the medical fraternity and anyone else wishing to speak with me. I have piles of research in my office and it has been heartening to see so many people engaging with their local members in a lawmaking process.

While the majority of mail is overwhelmingly in favour of voluntary assisted dying, there is also much correspondence against. I appreciate everyone taking the time to tell me their thoughts and beliefs, which I will consider when we debate this bill. It would be naïve to think covert forms of VAD are not already occurring. What VAD legislation should do is bring regulation to these practices and create order by codifying a system of safeguards to minimise the harm that would otherwise be occurring.

I support voluntary assisted dying in principle and believe if someone is dying and in intolerable pain and misery that I, as a member of parliament, have no right to decide how they end their life if they choose to do so. It is, however, our responsibility to ensure that a terminally ill person does not feel so ill and alone that they take matters into their own hands to end their suffering.

I am only going to share one of the many stories we have received as this is a story of the father of a friend of mine. With her permission, I share her story of her 91-year-old father who I will call Fred, who was suffering constant and ever-increasing pain from his bone cancer. Fred hung himself after seeing what happened to his beloved wife over a 12-year period. He preferred that to going through the constant and ever-increasing pain of his bone cancer.

Up and down to the toilet he went, half awake, doing battle with his angry growing tumour which prevented him from relieving himself with the ease we all take for granted. Maybe six times a night he repeated this journey. For him to receive the relief he needed so badly he needed to walk up and down and up and down until he felt he may be able to have that critical bowel motion that always must precede the urinary event. Every time he rose from his bed it was with anxiety.

He feared the time when his formula, his desperate need to urinate, would fail him. The two hospitalisations to reduce the tumour over the previous 18 months had been, as every other time, so painful. He would declare it was like peeing razor blades for a month afterwards. He craved a good night's sleep but he knew that sleep would never again be his. He could have cried with tiredness daily.

Fred's beloved wife, Gwen, whom he had known for 64 years, had Lewy body dementia for 12 years and this had broken his heart. He would go out into the garden and cry quietly - tears of grief slowly running down his face, keeping his grief within, protecting her from the truth. Watching her slowly drifting into the abyss of fear, disorientation and depression had nearly killed him. She would wake crying and continue all day, grieving, afraid of being put into a home.

His daughter, Claire, said it was the cruellest thing, he said, to see her suffer, lose ability, fall, become violent, damage herself, finally break a hip and then enter palliative care for 13 long days and long nights. In those last four and a half months of her life she had been moved between respite, nursing home, hospitals and assessment centres 11 times. No wonder she had no idea what was happening to her and the saddest thing - she could not tell them of the pain. The pain of moving her for 10 days with a broken hip, unable to convey the problem, to verbalise her distressing state and then the palliative care.

The nursing staff were kind, but Fred was there by her bed as she slipped under the morphine, unable to communicate. Thirteen days, no water, no food, no medication, just the morphine. Claire said he watched as the symptoms of dehydration claimed her - the blackening of the mouth, the little choking sound she made, the face sinking in. Finally, the desperate panting all through the night before she died. Nature's undertaker, pneumonia, claimed another soul. She suffered so badly and he suffered alongside her for so long. Fred was a man who contributed to life and cared for everyone. Claire said he motivated the elderly to get out and enjoy life. He read and studied, he volunteered and kept active. He joined and promoted the local citizens, organised monthly dine-outs, always had a joke for everyone and spoke to strangers in the street who looked lonely. He did that because he cared for humanity and just wanted to make everyone feel important. He knew that many of the elderly, unable to leave their homes often, may not have spoken to another soul all week. According to his daughter, Claire, he lived by his principles and never faltered.

One morning it would appear Fred slowly and painfully negotiated the old ladder he had dragged from the garden shed the day before. He had been smart enough to put this into place against the trunk of the tree that hung over his back fence the day before. He then fitted the noose he had previously prepared around his neck. He knew it would deliver him out of his shocking pain. When the moment came, that beautiful, fine, old man jumped out into space. Sadly, he had to face this horror alone.

I thank Claire for allowing me to tell the story of her wonderful father who took his own life at 91, rather than continue in uncontrollable pain. I reiterate that I support choice. It should go without saying any VAD legislation should contain built-in protections that do not oblige a terminally ill person to participate or be coerced into VAD, nor any medical practitioner be compelled to provide it. Again, choice is what I believe matters most.

As I mentioned earlier, it would naïve to think that covert forms of VAD are not already occurring. I emphasise I believe palliative care has a very important place in caring for the terminally ill. Should the VAD bill successfully become law, I would remain a fierce advocate for the support and funding of palliative care, and its ongoing improvement, in parallel with the rollout and responsible implementation of any VAD laws.

What has guided me on my thoughts on this bill is hearing the individual stories of those who have supported their loved ones through traumatic, painful and unreasonably drawn-out deaths. They are many and varied, but all have the same wish for a peaceful end of life for their loved ones, without pain and suffering.

Witnessing suffering of the type Fred experienced over a prolonged period is difficult and takes a heavy toll. Actually experiencing it would be an entirely other thing. I ask everyone to place themselves in 91-year-old Fred's position, exhausted and in intolerable pain, and then ask: is it wrong to end it at a time of your choosing with peace and dignity? I am told that VAD laws, when done correctly, provide this choice in a manner that is regulated, overseen and protects the vulnerable from existing practices which can go under the radar. There is no replacement for quality palliative care, and in the most severe and dire circumstances I believe that voluntary assisted dying has a place in a compassionate healthcare system. I note that this bill is version 18.

Member for Mersey, it is version 18? We have not had one since, have we?

Mr Gaffney - The final bill was 19.

Ms ARMITAGE - There have been many changes since the original bill was discussed. I have concerns with the continual changes and amendments to the bill, and it does appear to be a bit of a moveable feast. My preference for this extremely important legislative change would be for an expert panel, as in other states, or at the very least an inquiry into the bill itself to ensure that it has all the necessary safeguards. I support the principle of this bill, but I am concerned about the process.

I am concerned whether there has been adequate consultation with the drafting of this bill, as it is expected that any VAD legislation would be thoroughly consulted with all key stakeholders - for example, patients, community, palliative care providers, doctors, pharmacists, nurses, ANMF, HACSU, medical educators, medical colleges, the AMA, the legal profession, insurers, and the list goes on. It would also be reasonable to expect that any VAD legislation would be very carefully and thoroughly considered by parliament.

It must contain all the checks and balances, legal and professional protection, as well as safeguards to protect all patients, including the most vulnerable, providing confidence to all. I understand that many people cannot accept VAD because of their personal religious beliefs. Most people have some form of religion in their lives. I was brought up as a Catholic, as well as my sister, yet we see our religion very differently, and that is life. Who is to say who is right and who is wrong? I do not believe either of us are wrong. We just believe differently. To me, to be a Christian is to live a good life.

We should be honest, generous, work hard, love and care for others, and never hold grudges. Life is too short to be angry. My mother used to say, 'Live in the moment and make every moment count'. My mother had an advance directive. She told the hospital staff she did not want to be resuscitated, and no amount of talking to her would convince her otherwise - and we tried. I have also had many doctors contact me, both for and against. Initially, some were much against this bill - and later those same doctors, while still not in favour, their attitude had changed to one of acceptance that this bill could go through, and they simply wanted it to be as robust and safe as possible.

There are quite a few areas of the bill with which I have concerns. As mentioned previously, my personal preference would have been for this to have been a government bill, with perhaps a ministerial expert panel as existed in Western Australia guiding this process. However, this was not to be, and we need to work with what we have. I have heard the member for Mersey's reasoning as to the inclusion of the review to include children. That is one clause I certainly cannot accept, and I would certainly vote against that clause.

There are many other clauses I have some concerns with, but rather than go into detail now on the second reading, I will speak to those when they come up, when and if we get to the Committee stage. I have also appreciated the many briefings on this bill, both for and against, in particular, those briefings from the doctors in Victoria who are currently delivering voluntary assisted dying. I note their comments that it is sometimes the case that people have the medication, but never take it. Simply having it there gives people a feeling of relief, and removes much of their anxiety with their illness. Knowing they have a way out if they need it.

It is important to again make clear that everyone should have the availability of top-quality palliative care, and it should not be voluntary assisted dying or palliative care. They can work together, and we were told many people are very clear about their views and wishes at the end of their lives. Sometimes there is nothing palliative care can do - and sometimes with certain illnesses choking can be the way they die, and that would be a terrible death. What right do I have to deny someone the right to die peacefully, when the alternative death can potentially be horrible? I feel I need to respect other people's wishes at the end of their life. As I do not have the right to tell people who are suffering intolerably with a terminal illness that they cannot participate in VAD, I feel I must support the principle of VAD.

A couple of years ago, I was speaking at a nursing home, and one gentleman in the back of the room was in a wheelchair and could hardly move. He called out and he said to me, 'I want to die'. When I asked him why he wanted to die, he told me he had motor neurone disease and he knew the death that was coming. He knew he was not going to get better, and he simply wanted to die before he had a terrible death that he could not control. There are some very sad cases. I have heard many times that sad cases and hard cases do not make good laws, and I appreciate that. I do believe that we need to do the very best we can and provide choice for people.

We know that people sometimes take their own life in a horrible way. Should a hanging or other suicide to alleviate pain go wrong, it can be shocking, not only for the person but also for their family - and someone always has to find them. I believe that no medical person should have to take part in voluntary assisted dying, whether it be for personal, ethical, religious or other reasons. They should not have to give a reason. It should be the case that the patient raises the subject of voluntary assisted dying with their medical practitioner and not the other way around.

Interestingly, recently in one of the many conversations I have had with the medical fraternity, it was suggested to me that a palliative patient, perhaps without food or drink or medicine and only on morphine, was not suffering. But who would want to put their loved one through such an undignified death, with dehydration, organs failing, and families sitting, waiting and watching for that person to fade away? I contend in that case everyone suffers, whether the patient feels anything or not.

What a horrible death. I accept that this bill may have many changes, many of which are likely to come up and I will support if and when it goes through the Committee stage, but I will support this bill through the second reading into Committee.iated the old ladder he had dragged from the garden shed the day before. He had been smart enough to put this into place against the trunk of the tree that hung over his back fence the day before. He then fitted the noose he had previously prepared around his neck. He knew it would deliver him out of his shocking pain. When the moment came, that beautiful fine, old man jumped out into space. Sadly, he had to face this horror alone.

I thank Claire for allowing me to tell the story of her wonderful father who took his own life at 91, rather than continue in uncontrollable pain.

I reiterate that I support choice. It should go without saying any VAD legislation should contain built-in protections that do not oblige a terminally ill person to participate or be coerced into VAD, nor any medical practitioner be compelled to provide it. Again, choice is what I believe matters most. As I mentioned earlier, it would naïve to think that covert forms of VAD are not already occurring.

I emphasise I believe palliative care has a very important place in caring for the terminally ill. Should the VAD bill successfully become law, I would remain a fierce advocate for the support and funding of palliative care, and its ongoing improvement, in parallel with the rollout and responsible implementation of any VAD laws.

What has guided me on my thoughts on this bill is hearing the individual stories of those who have supported their loved ones through traumatic, painful and unreasonably drawn-out deaths. They are many and varied, but all have the same wish for a peaceful end of life for their loved ones, without pain and suffering.

Witnessing suffering of the type Fred experienced over a prolonged period is difficult and takes a heavy toll. Actually experiencing it would be an entirely other thing. I ask everyone to place themselves in 91-year-old Fred's position, exhausted and in intolerable pain, and then ask: is it wrong to end it at a time of your choosing with peace and dignity? I am told that VAD laws, when done correctly, provide this choice in a manner that is regulated, overseen and protects the vulnerable from existing practices which can go under the radar.

There is no replacement for quality palliative care, and in the most severe and dire circumstances I believe that voluntary assisted dying has a place in a compassionate healthcare system.

I note that this bill is version 18. Member for Mersey, it is version 18? We have not had one since, have we?

Mr Gaffney - The Finch bill was 19.

Ms ARMITAGE - There have been many changes since the original bill was discussed.

I have concerns with the continual changes and amendments to the bill, and it does appear to be a bit of a moveable feast. My preference for this extremely important legislative change would be for an expert panel, as in other states, or at the very least an inquiry into the bill itself to ensure that it has all the necessary safeguards.

I support the principle of this bill, but I am concerned about the process. I am concerned whether there has been adequate consultation with the drafting of this bill, as it is expected that any VAD legislation would be thoroughly consulted with all key stakeholders - for example, patients, community, palliative care providers, doctors, pharmacists, nurses, ANMF, A&U [TBC 8.02.32], medical educators, medical colleges, the AMA, the legal profession, insurers, and the list goes on.

It would also be reasonable to expect that any VAD legislation would be very carefully and thoroughly considered by parliament. It must contain all the checks and balances, legal and professional protection, as well as safeguards to protect all patients, including the most vulnerable, providing confidence to all.

I understand that many people cannot accept VAD because of their personal religious beliefs. Most people have some form of religion in their lives. I was brought up as a Catholic, as well as my sister, yet we see our religion very differently, and that is life. Who is to say who is right and who is wrong? I do not believe either of us are wrong. We just believe differently. To me, to be a Christian is to live a good life. We should be honest, generous, work hard, love and care for others, and never hold grudges. Life is too short to be angry. My mother used to say, 'Live in the moment and make every moment count'. My mother had an advance directive. She told the hospital staff she did not want to be resuscitated, and no amount of talking to her would convince her otherwise - and we tried.

I have also had many doctors contact me, both for and against. Initially, some were much against this bill - and later those same doctors, while still not in favour, their attitude had changed to one of acceptance that this bill could go through, and they simply wanted it to be as robust and safe as possible.

There are quite a few areas of the bill with which I have concerns. As mentioned previously, my personal preference would have been for this to have been a government bill, with perhaps a ministerial expert panel as existed in Western Australia guiding this process. However, this was not to be, and we need to work with what we have.

I have heard the member for Mersey's reasoning as to the inclusion of the review to include children. That is one clause I certainly cannot accept, and I would certainly vote against that clause. There are many other clauses I have some concerns with, but rather than go into detail now on the second reading, I will speak to those when they come up, when and if we get to the Committee stage.

I have also appreciated the many briefings on this bill, both for and against, in particular, those briefings from the doctors in Victoria who are currently delivering voluntary assisted dying. I note their comments that it is sometimes the case that people have the medication, but never take it. Simply having it there gives people a feeling of relief, and removes much of their anxiety with their illness. Knowing they have a way out if they need it. It is important to again make clear that everyone should have the availability of top-quality palliative care, and it should not be voluntary assisted dying or palliative care. They can work together, and we were told many people are very clear about their views and wishes at the end of their lives.

Sometimes there is nothing palliative care can do - and sometimes with certain illnesses choking can be the way they die, and that would be a terrible death. What right do I have to deny someone the right to die peacefully, when the alternative death can potentially be horrible? I feel I need to respect other people's wishes at the end of their life. As I do not have the right to tell people who suffering intolerably with a terminal illness that they cannot participate in VAD, I feel I must support the principle of VAD.

A couple of years ago, I was speaking at a nursing home, and one gentleman in the back of the room was in a wheelchair and could hardly move. He called out and he said to me, 'I want to die'. When I asked him why he wanted to die, he told me he had motor neurone disease and he knew the death that was coming. He knew he was not going to get better, and he simply wanted to die before he had a terrible death that he could not control.

There are some very sad cases. I have heard many times that sad cases and hard cases do not make good laws, and I appreciate that. I do believe that we need to do the very best we can and provide choice for people. We know that people sometimes take their own life in a horrible way. Should a hanging or other suicide to alleviate pain go wrong, it can be shocking, not only for the person but also for their family - and someone always has to find them.

I believe that no medical person should have to take part in voluntary assisted dying, whether it be for personal, ethical, religious or other reasons. They should not have to give a reason. It should be the case that the patient raises the subject of voluntary assisted dying with their medical practitioner and not the other way around.

Interestingly, recently in one of the many conversations I have had with the medical fraternity, it was suggested to me that a palliative patient, perhaps without food or drink or medicine and only on morphine, was not suffering. But who would want to put their loved one through such an undignified death, with dehydration, organs failing, and families sitting, waiting and watching for that person to fade away? I contend in that case everyone suffers, whether the patient feels anything or not. What a horrible death.

I accept that this bill may have many changes, many of which are likely to come up, and I will support if and when it goes through the Committee stage, but I will support this bill through the second reading into Committee.

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