Ms PATTEN (Northern Metropolitan) — I am very pleased to be rising today to speak on the Medical Treatment Planning and Decisions Bill 2016. As members are aware, I was fortunate enough to be on the Standing Committee on Legal and Social Issues when they conducted the end-of-life choices inquiry. I am also very pleased to say that I initiated that inquiry. This is why we initiated it. We needed to look at end-of-life choices and we needed to provide new tools for people at the end of their life. We needed to provide ways for patients’ wishes to be heard, to be respected and to be adhered to.
Through the inquiry, which I still feel incredibly honoured to have been part of, we had well over 1000 submissions, we held hearings throughout the state and we travelled internationally. I also personally travelled to California and spoke to the Californian senators who had initiated the advance care planning directives and information and education campaigns over there. I feel that finally we are coming to realise something that has been a passion of mine since prior to my being elected and certainly in the period that I have been fortunate to be sitting in this place.
When you look at the report of the inquiry, which I know many of you have — they are impossible to get; they are completely sold out; I gave away my last copy and have had to borrow somebody else’s for today — you see it is an issue that the public is completely engaged in. They want to talk about it, but they are scared to talk about it. We had over 1000 submissions and we held hearings around the community. What you will see from the 49 recommendations that were made in that report is that 19 of them were about advance care planning and advance care directives. This is a really, really important issue that the community responded to. I have to say we heard so many different opinions, evidence, recommendations and ideas around how we can improve end-of-life planning and end-of-life directives that will improve end-of-life experiences in our society to no end.
Currently we do not really like to talk about death; in fact we just do not. In some ways death is quite invisible to us in society. We do not see it anymore. Most people do not die at home. In fact while 80 per cent of people want to die at home, less than 15 per cent do. It is kind of invisible to us. Having said that, we probably see thousands and thousands of deaths on television. Whether it is gangsters being shot down, people dying in the most tragic circumstances or Arnie Schwarzenegger having a go at them, we see death all the time, but we do not see realistic deaths — we do not see what actually happens. We do not talk about what you want, how you want to die, what is important to you. These are the conversations that we must be having in our community. We are an ageing community. We are not all going to wake up dead, as many of us would love to do. We are not going to suddenly die — most of us anyway. Most of us are going to die of a chronic illness; most of us are going to be on that continuum for quite a long time.
As one of the witnesses said to the committee, we insure our houses for fire but when that person last looked the research said we are all going to die, but very few of us actually plan for it — very few of us think about this. The numbers are extraordinarily low in Victoria. Less than 14 per cent of Victorians have done any form of advance care directives or advance care planning, and I understand why. Up till now the tools we have had for this have been incredibly complicated and difficult. We have had to cover four different pieces of legislation to pick out who might be the substitute decision-maker. The Medical Treatment Act 1988 was actually fairly progressive for its time. We were the first state to say that a patient had the right to refuse treatment; we were the first state to do that. Since then every other state has introduced advance care directive legislation, and Victoria is the only state that does not have it, so I am very pleased to see that we are catching up. This meets the agreement that was made by all of the state health ministers in 2011 when they agreed to an advance care directive framework.
I like this bill. I think this bill finds the right space. I do not like its name, I have to say; I think one of the committee’s recommendations was that we call it the Future Health Bill, and I would have preferred that name, but I am not going to quibble or put amendments up about the name of the bill — the Medical Treatment Planning and Decisions Bill it is. The particular sections that I like are clauses 6 and 7, where the bill outlines what we want to hear from people about what they want in their treatment and how they develop that position. That is around values; very often it is around values. It is around expectations of the way they want to live and the way they want to die. It is around expectations for their families and how they want their families to remember them and how they want to remove the suffering for their families.
One of the great pieces of work that has been done on advance care planning, and I think it is one of the best in Australia — it has actually been done here — is MyValues. This service was produced by Barwon Health, by Dr Corke. Last night I did MyValues. As an example I tried it during the committee, but I filled in the MyValues survey again last night, and I encourage everyone to do it. I was quite surprised by the results. At some points I do want to be resuscitated at any cost, and this is what has been interesting. Research has found that people do want to be resuscitated. When they go through an advance care planning directive or an advance care planning conversation they talk about what they do want to do. They do want to see their grandchildren get married. They do want to do this, and they set this within their advance care planning. It is this conversation that takes the stress away from families and that enables a patient to get treatment that aligns with what that patient wants.
I have been hearing here today people saying that we cannot really trust patients to make those decisions for themselves, because they might make the wrong decision. Who do we want the decision to be made by if it is not the patient? If it is not yourself, who do you want the decision to be made by? Do you want it to be made by the doctor? Doctors do not want that. Doctors are supporting this bill; they want advance care directives. They want patients to be part of the conversation. We no longer have a paternalistic health system; we have a system where we are trying to make it patient centred — patient focused — and this is what advance care planning and advance care directives absolutely do.
I will be happy to talk more in the committee process about the proposed amendments that have been circulated today. I look forward to discussing this bill further in the committee process, but I just go back to the fact that there are very few health organisations that do not support this bill. In fact on looking back at the submissions from the end-of-life choices inquiry, I could only find three organisations that did not support advance care directive legislation, and they were the Australian Christian Lobby, the Australian Catholic Church and the Anglican archdiocese — those three for reasons that were completely religious.
I completely support everybody’s right not to have an advance care directive. In fact I do not think this legislation is going to mean that people will be running out and getting advance care directives; I do think it means that people are going to have a conversation around death and around their choices of treatment. I look forward to hearing more about the education campaigns that will follow this legislation. My understanding from the briefings is that $1.5 million has been put aside to provide training to doctors to enable them to have better conversations about death.
We heard throughout the inquiry that conversations about death were difficult. People did not know how to start them, whether they were doctors or not. Some doctors were saying to us, ‘You know, sometimes it is just easier to treat than to have the conversation’, so I look forward to the campaigns that will follow this legislation around educating us as a community. Many do not realise that 8 August is Dying to Know Day. It is a day that I think we should all be encouraging involvement in. The Shepparton valley hospice group tried to do it in a shopping centre last year. Sadly, people gave them a wide berth; people do not want to have the conversation. We are still concerned about having a conversation about death, dying and planning for it.
I want to quickly touch on the palliative care sector. Victoria has some of the best palliative care in Australia and around the world. We have great palliative care, but it is sometimes difficult to access palliative care. We often find that patients are accessing it too late. They should have been in there earlier, when they could have gotten much more sophisticated and holistic palliative care. Palliative care is not just about pain relief and adequate food and water; it is about a lot more. The advances in palliative care are really wonderful and something that we need to fully utilise and expand on, and certainly we will need to be funding it.
I listened to the point Dr Arup Bhattacharya, the divisional clinical director of Goulburn Valley Health, made at a public hearing when he said:
Unless we fully embrace advance care planning we will always fall short of good and effective palliative care because we will not know what our patients have wanted.
That is what this bill is about. This bill is about providing that information to your general practitioner, talking to your general practitioner and educating everyone around this. I fully support this. As I said at the start of my contribution, this is one tool in the toolbox of end-of-life choices. This is enabling patients to now talk about what they do not want and what they do want around end-of-life care and treatment.
As we know, the end-of-life choices inquiry made a very strong recommendation that we should have a body called End of Life Care Victoria, which I think would be a great centralised body that could deal with how we are going to ensure that advance care directives are able to be accessed by doctors, not only in Victoria but also interstate given the mutual recognition that these directives are receiving.
But we also want to consider what 80 per cent of the population want. They want to have this autonomy, they want to have these decisions about refusal of treatment but also they want to have a decision about the right for physician-assisted dying. The community is there. Politicians in this house may not be right there with them, but 80 per cent of Victorians want us to allow them greater autonomy at their end of life so that they can die with dignity, die in comfort, die without stressing out their families and die with the support of their medical practitioners. I would hope that as this Parliament moves on this year we start to provide a legislative framework for dying with dignity.
This bill is commendable and a well overdue first step in the process towards ensuring that everyone has as much choice as possible when it comes to the end of life. I feel privileged to have been part of this. I feel privileged that most of the recommendations of that committee have been incorporated into this bill, and I commend this bill.