Speeches | October 17, 2017

Voluntary Assisted Dying Bill 2017 Second Reading

Victorian Parliament - 17 October 2017 - Ms KEALY — It is a great privilege to be the lead speaker for the Liberal-National coalition in regard to this bill, the Voluntary Assisted Dying Bill 2017. Both the Liberals and The Nationals will be having a free vote on this bill. I note also that a number of amendments have been proposed, including a reasoned amendment. I have seen one reasoned amendment so far; I understand there will be further amendments put forward throughout the debate and likely through the consideration-in-detail process. I think there will be a variety of opinions expressed in this place over the next three days.

I am in the fortunate position of being lead speaker, because I have an opportunity to cover the key elements of the bill and cover off the proponents of the bill and why people believe this type of legislation needs to be in place, but also cover off some of the key concerns that people have, whether that is around their own belief system — concerns that are often an emotional matter and a belief system issue — whether it is around technical elements of the bill or whether it is around how this bill will operate in practice.

At the outset I would like to acknowledge the extreme respect which I have observed throughout this debate. It has been very difficult in that nobody really enjoys talking about dying. I have a lot of experience within the health sector; we speak about dying on a regular basis because it is something we are confronted with throughout that process. But generally people just do not like talking about it and facing the fact that our lives will come to an end at some point in time. I know that my father, who has been a very good support and source of advice and guidance throughout my considerations on this bill, would be more than happy to speak about this in a very full and frank manner. However, I know that if I even tried to raise the matter with my mum, she would be saying, ‘Touch wood, touch wood, touch wood’, without giving it any time at all and looking to avoid the conversation in every manner.

I have been overwhelmed by the number of contacts that I have had from people within my own community and across Victoria and Australia. I have been particularly moved by not only people who have been willing to share their own very emotional stories based upon their religious belief and why they definitely do not want to see legislation of this type in place in Victoria but also people who have shared very, very personal stories, and emotionally harrowing stories, about their experience of seeing a loved one such as a family member — a parent, an aunty or uncle, a wife or husband, even their child — go through a very painful death which included a great amount of suffering. I thank everybody who has contacted my office and contacted me and been willing to share those very, very personal stories. It has certainly assisted me to think through what the implications of this bill would be in Victoria and look at the elements that are welcomed and the elements that are of concern.

The debate has been wideranging. There are concerns that have been listed around safeguards. There are also some technical elements. Certainly on our side of the chamber people have raised some of these concerns with me. I will give a general overview of those as part of my contribution. I also want to go over the generalised support for the bill, and I will read out some of the messages that have been sent to me by local people regarding their concerns about or support for the legislation and the experiences that led them to this view. Again, I thank everybody for the debate.

I think also it is going to be an interesting week in this place. It will be emotionally harrowing, as you rightly point out, Speaker, and I do ask that respect for other people’s views continue over the coming days through whatever pathway this bill may take through this place.

This bill is built on the back of the work of the Legislative Council Legal and Social Issues Committee, which tabled its Inquiry into End of Life Choices: Final Report in June 2016. It is my understanding that the Andrews Labor government has been working on this bill for some three years and that this is something which there has been a commitment to for a long period of time. There has been great effort to try and form legislation, or form a bill, which the minister believes is fair, has appropriate safeguards and would make voluntary assisted dying (VAD) available to Victorians.

On 8 December 2016, in response to a recommendation of the inquiry into end-of-life choices, the Minister for Health established the Ministerial Advisory Panel on Voluntary Assisted Dying to make recommendations for a safe and compassionate voluntary assisted dying bill. In January the panel released the Voluntary Assisted Dying Bill: Discussion Paper, and in July 2017 the ministerial advisory panel released the Ministerial Advisory Panel on Voluntary Assisted Dying: Final Report. In September, as we know, the bill was tabled in this place.

I would like to go over the main provisions of the bill briefly. The main intent of the bill is of course that no person, patient or health practitioner is obliged to participate in voluntary assisted dying. The intent is that it is a voluntary process. There should not be any coercion. It should be something that the patient volunteers to participate in. The doctors involved in the process should be involved voluntarily, and any other health practitioners involved in the process should also be involved on a voluntary basis.

The person must initiate the conversation about voluntary assisted dying themselves. They must be an adult and ordinarily be a resident of Victoria, have decision-making capacity and be diagnosed with an incurable disease, illness or medical condition that is either advanced or progressive or that will cause death and is expected to cause death within weeks or months, but not longer than 12 months, and that is causing suffering that cannot be relieved in a manner that the person deems tolerable.

Mental illness and disability have been explicitly excluded as a way for a person to qualify for voluntary assisted dying. However, if a person otherwise qualifies for voluntary assisted dying, they will not be disqualified due to a disability or mental illness. It is my understanding that this has been included to avoid discrimination against people who have a disability or who have an existing mental illness.

A request to access voluntary assisted dying must be made three times — once in writing — over the course of 10 or more days. Witnessing of the written request cannot be done by someone who will benefit from the person’s death. The 10-day-plus time requirement can be reduced in exceptional circumstances where the person is likely to die within that time frame.

The person may withdraw from the process of accessing voluntary assisted dying at any time. Following a withdrawal from the process a person must return right back to step one of initiating a conversation and making a request if they want to return and commence that process once again.

Two independent doctors — coordinating and consulting doctors, as it is termed within the bill — must be satisfied that the person qualifies for voluntary assisted dying and that the request is voluntary, informed and enduring. The two independent doctors must be fellows of a specialist medical college and have completed the voluntary assisted dying training. At least one of these doctors must have expertise in the person’s disease or illness.

Should the person not go ahead with taking the drug that has been dispensed to them in terms of voluntary assisted dying medication, it must be returned within a month of the death. If the person has a self-administration permit, they must administer the medicine themselves at the time they choose to consume it. Anyone present at the time of self-administration is protected. If a person is unable to self-administer and digest the medication, the doctor can apply to the Secretary of the Department of Health and Human Services for a practitioner administration permit. This cannot be applied for in advance of the person being incapable of self-administering. An independent witness must be present if a doctor administers the voluntary assisted dying medication.

This bill also establishes a Voluntary Assisted Dying Review Board whose members are appointed by the Minister for Health. Every approved case of voluntary assisted dying will be reviewed by the Voluntary Assisted Dying Review Board. The board will not be tasked with clinical decisions but with ensuring that the legislation is being strictly adhered to and that any concerns about patients or doctors are identified and addressed. The board will report to Parliament annually, and the act will be reviewed in its fifth year. For the first two years of operation of the bill the board must report to Parliament every six months on the operation of the VAD scheme. They can review decisions relating to residency status or decision-making capacity upon application by any person who has a special interest.

It is an offence to assert unique influence on a person so that they request or self-administer voluntary assisted dying medication. The penalty is a maximum of five years in prison or 600 penalty units, or both. Non-compliance with a practitioner administration permit or administering a VAD substance to another person can both result in life imprisonment.

In terms of voluntary assisted dying, a number of the contributions that have been made to me point out that we do need to have a greater amount of support for palliative care in the state of Victoria. This has certainly been something that I have seen in my experience. Generally people want the opportunity to die at home. Not many people choose to die in the sterile environment of a hospital, which is obviously not familiar to them. It is a clinical area by nature. There is a lot of disruption and strangers come through. It is not an area of comfort or what people generally desire in their last days of life. People want to live their final days in their home surrounded by family and friends.

I am extremely proud that the Liberals and The Nationals have announced that, should they be elected, record funding of $140 million would be allocated to improve access to palliative care in the state of Victoria. I think this is something that each and every one of my coalition colleagues is extremely proud of. This package will include doubling specialist palliative care medical and nursing services to community palliative care clients, especially in rural and regional Victoria; a 50 per cent increase in funding for community palliative care provided in the home, including overnight care, in-home respite and carer support; and enhanced links to after-hours supports, such as GPs and pharmacists. It will also include significant education and workforce development to recruit and train skilled palliative care workers to deliver expanded services, enhance health professionals’ capacity to have end-of-life conversations and to support volunteers.

I would like to see this palliative care support put in place as soon as possible. Too often you hear of stories where people simply cannot access the supports that they need when they are nearing the end of their life. I absolutely commend the Liberals and The Nationals for putting palliative care first and announcing this policy that would mean that Victoria has the best palliative care system in Australia and would certainly be very much a leader in the world.

I would now like to take the opportunity to go through some of the key concerns that have been raised generally within the euthanasia or voluntary assisted dying debate. By far the most consistent theme I have heard of is around the sanctity of life, and this is generally couched in terms of individuals’ religious beliefs. That is something I think we need to be respectful of throughout this debate, no matter what an individual MP’s religious beliefs might be.

Obviously when people are facing death is a time when they look at their religious belief system and are really forced to confront what they think will happen next, how they have lived their life, what they could have done better and whether they can make peace with anything that has gone on in their lives that they do not feel they did their very best about. It is something we need to listen to and not dismiss as being unimportant. I think when people are looking at death or thinking about death, certainly religion has an enormous influence on so many people. We cannot afford to ignore that as members of Parliament.

There are also concerns related to a breach of the patient-doctor relationship. That is a relationship which is based upon treatment rather than taking action to end somebody’s life. Many individuals find that this is a contradiction — that it is not appropriate to put that relationship between a doctor and a patient at risk — and this may either jeopardise their opportunity for treatment or their ability to live their last months, weeks or days with a clear conscience that they are doing the right thing. This is something that again goes to the concerns around coercion and whether we are putting that relationship with a doctor, which is a very trusted and personal relationship, at risk through elements of this bill.

There is a fundamental concern which has come through that this legislation is in breach of the Hippocratic oath that all doctors swear and try to adhere to throughout their medical training and then through their medical practice. It is a concern that if people feel that this is being breached, they may question what other elements may be breached down the track. It comes to perhaps that slippery slope argument that we also hear quite often.

There are also concerns regarding some of the safeguards that have been outlined in the bill, especially with regard to people with mental illness. One element of concern which has been raised by a number of people is that if people are suffering from depression and they have a terminal illness, they may be more likely to go down a pathway of voluntary assisted dying. Is it a risk that there is not a mandatory assessment by a psychiatrist or a mental health practitioner and professional to rule that a person is not suffering from depression but rather has extensive suffering related to their terminal illness?

There is also concern around people who may be coerced if there is a history of, or a risk of, family violence or elder abuse and the influence that others may have on their decision-making in regard to it being voluntary to participate in the voluntary assisted dying system. There are also concerns in regard to people with poor access to quality health care, poor access to palliative care and poor access to end-of-life care.

There are a number of technical issues that have been raised with me regarding this scheme, particularly in relation to there being no regard given to treatable depression or other mental illness which may be driving a requester to seek suicide. There is nothing to ensure that patients are properly informed about what palliative care can do for them, let alone to ensure all Victorians have access to the palliative care they need. There is nothing to require that an assessment be done by a practitioner familiar with the patient, and there is no restriction on doctor shopping — indeed doctor shopping is expressly facilitated by the bill. While a doctor cannot initiate a discussion of suicide in the consulting room, it is unclear whether or not they can fill their waiting room with leaflets promoting assisted suicide. There is no capacity for hospitals or other healthcare services to decline to have suicide or euthanasia provided within their service.

The regime is available to any Australian resident willing to rent and live in a flat in Victoria for the few days needed for their assessment and death. There seems to be nothing to stop the two assessing practitioners relying largely on another doctor’s diagnosis and prognosis. The regime is much less conservative than the Oregon regime — a 12-month prognostication period versus a six-month one and a 10-day waiting period versus a 15-day one where a 12-month prognosis is almost impossible to make accurately. The test of suffering is purely subjective. Other elements are, I know, going to be covered off quite comprehensively by other members within their own contributions.

I would like to raise two practical concerns that have in my view not been addressed. If the Andrews Labor government has been working on this legislation for three years, as has been reported, it is extremely disappointing that further steps have not been taken to address these matters. The first is around access to Nembutal. I think generally throughout most of the voluntary assisted dying debate there has been an assumption that Nembutal would be the drug that would be provided to individuals who are going to participate in voluntary assisted dying. It is extraordinarily disappointing and is either gross negligence or perhaps a deliberate omission, because we know that the Therapeutic Goods Administration has not approved Nembutal for human consumption in Australia. I really hope that it is not a case of politicking and in some way looking at a way that perhaps the federal government can be blamed for not making the drug available in the state of Victoria. I would be extremely disappointed about that if it were the case.

It seems that there should have been some steps taken to make sure that Nembutal, which is seen and accepted as the preferred medication for voluntary assisted dying, would be available to people in Victoria. It is extraordinarily surprising that this has not been the case. I realise that there are other combinations of drugs used around the world; however, there has generally been an assumption that Nembutal would be the drug of choice. It has not ever been reported by the government that they are taking any steps to address the supply of Nembutal, and that is a key concern.

There is also a concern from a country perspective in that in rural Victoria in particular we have a number of overseas-trained doctors who are under supervision because they do not yet have their fellowship. There is a shortage of doctors with their fellowship in rural Victoria, which means that to find one doctor, let alone two doctors, who are willing to review the case and who have the specialty that is required as outlined within the bill is going to be hard for our people. If we have a system whereby it is easier for people in the city to access certain health care than it is for people in the country, we are going to get another gap. I am just concerned that the more we push people to a doctor that has a fellowship who is practising in a larger metropolitan area, it will mean that an individual has to move away from their home area. The doctor therefore will not have a long-term understanding of their family situation, their home needs, their medical history and their family history, and I think that should have been addressed also.

The generalised support is really focused around acknowledgement that this is already happening within our healthcare system. We know that palliative sedation is common, and this is something that was heard very loudly within contributions to the inquiry into end-of-life choices. It is also something that many people have conveyed to me throughout this debate. It is around doctors having very frank discussions with family members and saying, ‘Your family member has only days to live and they are in a lot of pain. We can increase the morphine to a point where it is toxic and they will not live’. These discussions have been very frank and certainly could be interpreted as voluntary assisted dying. We have also heard through the inquiry reports of horrific suicides, such as an individual who took extreme action by suicide through a nail gun. I think that is such a devastating story to hear and has to sit with any MP who is considering this legislation.

If we acknowledge that there is a form of voluntary assisted dying already in place in hospitals — whether it is through suicide, whether it is around palliative sedation or whether it is around withdrawal of food, of drink or of medication — then we need to look at what regulations are around that, and at this point in time there are none. If we accept that this is already happening, then putting a framework around this process will capture people who are looking at euthanasia as a choice. If it is being delivered in Victorian hospitals, then we need to make sure that we do have a review framework around it.

Surely this will better monitor and manage this existing practice. We will be able to capture the number of people who are involved in this. It will provide a better opportunity to ensure there is no coercion and that there is no elder abuse, and of course we will make sure that there are appropriate time frames and treatment options raised with the individual, which will be reviewed by clinical peers. It will be reviewed by the Voluntary Assisted Dying Review Board. I think always having someone looking over your shoulder and knowing they are going to assess whether you make the right decision or not makes for a safer system.

I would now like to just talk about some of the local concerns and share those with the Parliament. Firstly I would like to go through some of the comments that have been made to me by people who are against the Voluntary Assisted Dying Bill. One person writes:

As a constituent member of Lowan, I wish to bring to your attention the current government bill: assisted suicide and euthanasia. The proposal for ‘assisted dying’ is extremely dangerous and full of unacceptable ideas that put society’s most vulnerable at risk.

Euthanasia distorts the patient/doctor relationship by turning doctors into ‘life takers’, and patients into ‘victims’. It undermines the essential trust at the heart of that relationship. Most doctors, upon graduating, still take the Hippocratic oath — a pledge to preserve life, not take it.

A second person opposes this bill on religious grounds as ‘taking away God’s right’:

How far does this go — the checks and balances?

He says this has been done overseas and it is not what the media portray it to be. He says it is ‘quite a mess’ and like a ‘landmine’, and says that in Denmark and Holland, for example, even nine-year-olds are now on the list. The man claims that even if there is no religion involved, there is still not enough evidence.

Another gentleman said he believes life is precious and should not be overridden. He said it was the first time he has ever contacted a member of Parliament. That is something that is quite consistent — we had a lot of people who contacted me say I was the first MP they had ever contacted.

Another contributor writes:

… please don’t agree with … the euthanasia bill as it doesn’t matter what safeguards or restrictions they put on it, it will be watered down at a later date … I am one with a life-threatening cancer and I want to live out my days to farewell my family without this assisted suicide hanging over me.

Another one:

I am concerned about Daniel Andrews’s push to legalise euthanasia …

I believe doctors, nurses and other healthcare professionals already do a fantastic job at easing suffering and that more should be invested in this area so that no-one suffers at the end of their life.

I thank all those people for their contributions and respect their views on this legislation.

I would now like to move to some of the letters I have received in support of the bill. One I would particularly like to read through is from Brandi Galpin. I have known Brandi for quite some time. I know her father, actually. Her father, Neville Galpin, grew up with my father. He was from Charam, my father was from Ullswater, and they spent most of their younger years together:

An accomplished sportsman in his younger years, for the last 20 years of his life he was putting all of his energy into building up his timber business to build up his superannuation and to pass the business on to his son. Neville spent his days felling trees, milling timber and sorting and dressing the timber for sale.

As a fit, healthy and well-built man Neville’s diagnosis of motor neurone disease in 2015 was a devastating blow for him and his family.

The first sign was an uncharacteristic tiredness, lack of strength and severe fatigue. At first, Neville just put this down to getting old. Then he read a piece on Neale Daniher’s diagnosis with motor neurone disease, specifically about not being able to squeeze the clothes pegs to put things on the line, that Neville began to suspect that this was more than old age. It was when the muscles in his arms began to twitch involuntarily and when he could not summon his voice to yell out across the noise of the machinery at the sawmill that Neville and his family realised that this diagnosis could be the unthinkable.

Neville was officially diagnosed in July 2015. He was very clear as to his intentions right from this point. He instructed his daughter that upon his death it was his wish to be cremated and his ashes scattered on the river near his house. He was very clear that he didn’t want there to be a headstone for his children to stand and be sad at. His second wish was that he have an option to end his life before his suffering became unbearable for both him and his family, and to this end he asked his daughter to assist him to obtain Nembutal from overseas so that he had the means to fulfil his wish when the time came.

Motor neurone disease is a horrible disease. And it is horrible in different ways for everyone who is diagnosed. Some people end up spending decades in a wheelchair, unable to move or speak. And Neville’s family were dreading that this strong, proud man would end up as nothing more than a pair of eyes in a chair.

As it happened, Neville’s lumbar region was the first area of his body to fail and his ability to breathe began to diminish quickly, and his demise was not to be decades away but just nine months after his diagnosis. He was supplied with a machine to assist him with his breathing, and had a PEG tube inserted into his abdomen so that he could continue to receive nourishment in anticipation of the failure of his ability to swallow and speak.

As he further deteriorated Neville struggled for breath and his suffering was evident as he groaned in pain and frustration and tears fell down his face. He was asked by his family if he felt it was time for the Nembutal and he said he’d be right for ‘just a couple more days’.

In the end the opportunity for Neville to self-administer the Nembutal began to disappear. He soon needed his breathing machine full-time and as his distress at his gradual suffocation increased he was provided with palliative care to ease his suffering. His family knew the end was near because Neville was no longer interested in polishing off a Crown lager, which had been one of his only comforts in the last few months. Neville was provided with nourishment and fluids via the PEG tube in his stomach. And as he was no longer drinking on his own, this also meant that there was no longer any opportunity for Neville to be able to self-administer the Nembutal should he decide to use it.

In his last distressing days, as Neville struggled to breathe, he asked his doctor to help him die. The doctor gently explained that he could not do that, but that he would provide Neville with medication to make him comfortable.

In his last few hours Neville was very distressed and his wife called the palliative care team for more assistance. His wife feared that despite the promise she had made, she would no longer be able to care for Neville at home as he had become too sick for her to manage. After the last dose of medication Neville had become rigid in his bed and was groaning softly at intervals, and was too sedated to be able to communicate.

Neville passed away as a result of motor neurone disease on 14 April 2016. He was cremated and his ashes were spread on the river as per his wishes. Sadly, his wish to be able to end his life at a time of his choosing, in order to preserve his dignity and enable him to have agency over the end of his own life, was unable to be fulfilled and Neville and his family suffered needlessly.

As Neville would have said, ‘You wouldn’t let a dog suffer like this’.

We must have this voluntary assisted dying legislation passed so that we can prevent the needless suffering of those who are dying, the anguish of their families and to alleviate the futility of the position of medical practitioners who must provide what is often inadequate end-of-life care and who are forced to prolong the suffering of those who will ultimately perish. The beliefs of people who hold that life is sacred and should be prolonged at all costs can still be respected, and no-one will be forced to end their own life, but just as we have self-determination to live our lives largely as we choose, so it follows that we should be able to choose the manner of our passing from this world.

I have a number of other contributions from people who have similar experiences, whether it is a family member who has had breast cancer or whether it is about somebody who has actually called for greater openness within this legislation to allow people with dementia to be able to participate in a voluntary assisted dying process. There are people who are single. A single man wants to know that he has legislation where he can make his own decision and not rely on a family member or a partner to be able to do that, because he does not think that will be possible for him. There is somebody whose mother died a horrible death when she was diagnosed with multiple myeloma and ended up in extreme pain. I have got people who have contacted me saying that the morphine did relieve the pain but it did not relieve the suffering. There are numerous contributions by local people.

I am nearing the end of my time for this contribution, but I did just want to say thank you to each and every person who has contacted me about this important legislation. I do reserve my position due to the high number of constituents who are still contacting my office. I have had over 20 people contact my office within the last 24 hours. I still want the opportunity to consider those before I make a decision on how I vote on the legislation. I also note that there will be a number of amendments that will be moved before the vote — that there is a reasoned amendment that will be put forward as well as a number of other amendments throughout the debate — but again I would just like to commend everybody for the high level of respect for every individual’s perspective on this highly complex and very emotional debate.

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