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Guardianship and Administration Amendment (Advance Care Directives) Bill 2021

Dr Rosalie Woodruff MP

Dr Rosalie Woodruff MP  -  Thursday, 1 July 2021

Tags: Health

Dr WOODRUFF (Franklin) - Mr Speaker, the Greens warmly welcome the changes to introduce and modernise this legal framework, to have a comprehensive human-rights basis to decision making at the end of life. It is something the Greens have championed as a party. Ms Ogilvie can frown, but Dr Bob Brown, when he was a member of the Tasmanian parliament, brought in the natural death bill. We were the first party to introduce legislation for voluntary assisted dying. Three times it took for that legislation to come to pass. We supported it all the way.

This is part of the same package. It is about recognising that people at every stage of their life ought to have the final decision-making capacity. We should be in charge of what happens to us. We should be in charge of medical interventions. The choice to receive care or not to receive care ought to remain in our hands until the very end of our days. Advance care directives are a form of future planning. They provide us with options for medical interventions and to be as much in control of our end-of-life as we are able to. Many of us have no idea when that moment will be. Only a small proportion of the community have some sense of when that time might be. That is why it is important to have a community conversation about planning for that time, putting our words down and making our views clear, so that the health professionals, lovers, family and friends who are involved in making decisions on our behalf if we cannot make them for ourselves are clear about what our intention is for the medical intervention we receive or do not receive, and how our passing should be managed.

I thank the community advocates who have been working on this issue for decades. This bill is the culmination of work that has been done tirelessly by people gently demanding that we have choices, so that we can die with dignity. I want to mention Margaret Sing and the others from Dying with Dignity who have long worked in this area, as well as people from Palliative Care Tasmania, the Council on the Ageing and Advocacy Tasmania. These people have been working in this space for a long time, advocating for people to make decisions at this time of our life. The number of submissions made to this amendment to the Guardianship and Administration Act are an indication of the interest in the community about amending this law.

I note the people, the bodies, who made submissions:

Advanced Care Planning Australia, Advocacy Tasmania, the Anglican Church, the Australian Medical Association Tasmania, the ANMF Tasmania, Council on the Ageing (COTA) Tasmania, Dying with Dignity, Li-Ve Tasmania, Intersex Peer Support, the Society of JPs Tasmania, Medical Insurance Group, Palliative Care Tasmania and the Tasmanian Law Reform Institute, as well as Ms Norma Jamieson.

These are the people and groups who were listed on the Department of Justice website as having made contributions. I am aware from the briefing I had with the department staff - thank you for the quality of that briefing - that stakeholder briefings were given to a range of those groups, the Law Society and a number of legal bodies.

There has been an appetite for this legislation. I commend and thank the Tasmanian Law Reform Institute for its comprehensive body of work. It tabled its report on the Guardianship and Administration Act 1995 in December 2018. A section of that report dealt specifically with advance care directives. The Department of Justice has been working through the recommendations from the Tasmania Law Reform Institute and has adopted all the Institute's recommendations.

The Law Reform Institute noted late last year that a few things had not been included in the exposure draft of the bill. The majority of points made by the TLRI in its submission to this exposure draft have been adopted in the final drafting of the bill we have before us. I have a couple of questions on those things. It is important that body of work has been adopted in this bill because it was rigorous. It outlined the need for very good decision-making criteria on advance care directives.

A strong principle the TLRI recommended for the making of directives, the principle of flexibility, has been incorporated into the bill. An advance care directive should be able to be made in the most flexible but still rigorous and meaningful way, that could be balanced by stringent checks while allowing people to make a directive in a range of different situations and not be so strict that making it is inaccessible to people.

People can use the department form but that is not essential. That is an important point that a number of submissions made, that there should be some flexibility in the manner of a form or the instrument that can be considered a directive, so there will be a standardised form but it does not have to be used.

Importantly, an oral advance care directive can be made where there are two witnesses. I understand that this has been based on the ACT law and the particularities of the making of an oral advance care directive where one of the two people who are witnesses to the directive has to be a health practitioner and the other must not be a person who has an opportunity to make some pecuniary advantage from a person's death, or a close family member or a friend or someone who has some level of formal responsibility for the care of that person. That is a very important distinction that still provides for the opportunity for making an oral advance care directive.

One of the questions I had has been adequately covered in the bill but I will still raise it. It is in relation to people who do not speak English. Palliative Care Tasmania raised a concern that there might a chance that information that was translated by a family or a friend in the making of a directive might not be perfectly relayed and to forestall that possibility the bill requires that an interpreter has to be used to make sure a person's directive is captured precisely, so I think that sounds appropriate. There is always a question about the availability of interpreters. If the minister has any comments which she could make about that it would be appreciated.

One of the submitters made the point that in this COVID-19 world we have stepped up our understanding about the importance of having a variety of interpreters available for god health information to be made available to as many communities as possible, so it would be good if the minister has any information she could give on discussions about how the department might be making advance care directives, the information about that being available to different language communities in Tasmania and the availability of interpreters. Would there be a consideration for some education to those communities about this new law and the making of advance care directives? That would certainly be an excellent thing if that was to happen.

Another important principle in the bill is the test of maturity, where adults under this bill will be assumed to be mature unless proved otherwise rather than in the reverse. Importantly, children will be able to make an advanced care directive to a medical practitioner witnessed by a health practitioner. That is such an important matter. A really important point the bill makes which has been inserted from points that were made during the consultation process is that there is a range of reasons that a health practitioner must not take into account when determining whether a child has adequate decision-making ability to make an advance care directive. In other words, a child or an adult cannot be considered to have impaired decision-making ability in respect of a whole range of reasons that may influence the prejudices or the particular world view of the health practitioner themselves.

In other words, issues to do with an imperfect decision-making ability has nothing to do, for example, with whether a person has engaged in illegal or immoral conduct, they have a particular sexual orientation or express a sexual preference, they are not able to understand matters of a technical or trivial nature, they do not have particular levels of literacy or education, or they can only retain information relative to the decision for a limited amount of time, and so on.

These are really important matters because under section 35D(5) clearly this will be tested with people who have dementia as well as young people and a whole range of other people and it is very important that we have clarity about when a person is of a sound mind and capable of making these sorts of decisions. I really commend that part of the bill.

I want to make some comments about Advocacy Tasmania's concerns. They have made a submission about the advance care directives amendment we have here today but the point they make is about the whole review of the Guardianship and Administration Act which was done by the TLRI. They make some really important points about how these changes that are made today will ultimately fit within the broader review and the recommendations that were made by the TLRI for the rest of the Guardianship and Administration Act.

They make the point that there is a substantial incompatibility between the proposed advance care directive provisions and emergency orders that can be made under the Guardianship and Administration Act and that these things are trying to achieve fundamentally different outcomes. On the one hand they are seeking to empower people with decision-making capacity to make decisions about the future and on the other trying to protect and act in the best interests of people who make 'unreasonable' decisions in the views of the medical profession.

They have found that some of their clients express concerns to them that they are worried that they might be unduly influenced to sign do not resuscitate orders and, on the other hand, they also have clients who have expressed concerns that their capacity to make advance care directives would not be respected. They say that many issues of the act and the bill come down to the definition of disability that is used.

At the moment 'disability' means 'any restriction or lack resulting from any absence, loss or abnormality of mental, psychological, physiological or anatomical structure or function of ability to perform an activity in a normal manner'. That definition undermines the human rights of people with disabilities as equal members of the community. I will not go into a lot more detail about that. We will revisit this, and have already made a number of these points on behalf of people with disabilities, and people who have been suffering unfair, unreasonable detentions of their liberty that have been made, they say, by the Public Guardian and the Public Trustee. This is definitely an area of reform that must be made immediately.

In relation to the bill before us today, Advocacy Tasmania say the fundamental issue is that the act does not depend on decision-making capacity, whereas advance care directives do. There will often be people who would meet the requirements to make an advance care directive, while at the same time also meeting the requirements for full substitute decision-making under the act. We believe this inconsistency is likely to lead to fundamental harm for people subject to the act, and it can also be addressed by the full act being urgently and forcibly reviewed. They give the example of a man called Andrew, who has a number of medical conditions that restrict his mobility and frequently require him to attend hospital for treatment.

Andrew has very high intellectual capacity and no impairments with his decision-making capacity. At age 21, he experienced a medical event requiring lifesaving emergency treatment to be undertaken. Prior to the event, Andrew had frequently communicated to his treating practitioners that should he require lifesaving emergency treatment, he wished to refuse treatment. His practitioners acknowledged Andrew's wishes and stated that they understood, but reminded him that there was no legal protection for advance care directives. When the event occurred, Andrew was subjected to the lifesaving measures he had specified he did not wish to receive. When asking afterwards why his wishes were not respected, Andrew states that he received a strong impression that medical staff did not respect his capacity to make decisions on the basis of his physical disability. Andrew states that because he uses a wheelchair, it is extremely frequent for people, including medical professionals, to assume he also has an intellectual disability.

Under the proposed amendments, they say, even if Andrew had a formal advance care directive in place, it would be possible for the board to order that Andrew received lifesaving measures due to the 'reasons of urgency' part of the bill. Andrew has stated he is fearful that even with a formalised advance care directive, he will again be subject to medical intervention he does not want to receive, on the basis that people will assume his disability automatically equates to an inability to make informed decisions.

Andrew's case highlights, they say, the currently existing issue where the framing of the act around disability leads to assumptions that people with disability do not have decision-making capacity. The extremely low bar of evidence, investigation and review of emergency orders has created a disturbing trend of people with disability being placed under emergency orders, when they have no decision-making impairments. The ability for emergency orders to override advance care directives will, therefore, only deepen inequality for people with disability in Tasmania, unless the existing flaws with the act, particularly around emergency orders, are addressed.

So, Mr Speaker, we see how incredibly important it is that the rest of the TLRI recommendations be brought on urgently. Clearly, there is an issue here with this application of the definition of disability in everyday life that is affecting far too many Tasmanians.

If the minister could just comment on the recommendations that Advocacy Tasmania made in relation to this bill, which was that the act is urgently reviewed according to the TLRI recommendations, rather than the advance care directives being implemented in isolation.

I do understand you have talked about this before, about the need to bring on tranches of the bill, and I do accept that.

My question is in light of the concerns Advocacy Tasmania has raised. How will some of the very good things that are in this part of the bill, how do you see them speaking to and informing the work for the rest of the act? I presume that the changes that we have here, because they were recommended by the TLRI, are congruent with all the rest of the changes that are being proposed by the TLRI for the rest the Guardianship and Administration Act. If you could speak to that, I would appreciate it.

Their second recommendation was that the language of the entire act, not just in the advance care directives, be reframed away from disability, to apply to all members of the community equally, in accordance with the TLRI's recommendations on this matter.

They also argue that advance care directives should be binding, and not able to be overridden for reasons of urgency or expediency, to prevent people’s decisions being routinely overridden in practice. This is proposed new section 35U.

I understand the arguments that are made for why advance care directives may need to be overridden for urgent and emergency situations. That is because the person may make an advance care directive about not being resuscitated in expectation that it would be applied to a certain life ending illness. However, where they were receiving surgery, for example, to try to prevent the progression of their illness and lengthen their life, they could have a haemorrhage, and that is the sort of thing that they would want to have managed, so that they didn’t die on the operating table in that situation.

I do understand that. Nonetheless, I totally see the situation that Advocacy Tasmania is talking about, representing people with disability who are concerned, or experience, they say, their will being overridden by medical professionals who believe they know best about them. That is obviously intolerable.

I wanted to mention something Norma Jamieson noted in her submission, probably in relation to clause 35O - the requirement to make reasonable inquiries as to an advance directive, which requires a health practitioner where, other than in circumstances where urgent care is required, to make reasonable efforts to ascertain whether a person has given an advance care directive. In her submission, Norma Jamieson said, 'It would be a good idea if people had that information in a sort of wallet or card form'. I do not know if there are any discussions about having a standard form. The department has a form on the website, but I am not sure whether the department also has information that would suggest to people they could make a note of the fact that they have an advance care directive already made and keep it on their person.

Maybe this already happens. That is something COTA and other organisations could use and transmit that information to their own stakeholders. It would certainly help with that information being widely available in case a person who is not their regular medical practitioner is taking care of them.

Mr Deputy Speaker, it is important that proposed new section 35W, in relation to conscientious objection, does allow health practitioners to refuse to comply with the provision of the advance care directive only if they also refer the person to another practitioner and not provide treatment that would prevent the provision of an advance care directive being given effect.

This is a very important point. It goes to the heart of the underlying principle of this bill for us today which is about choice and fundamentally the choice should be in the hands of the person whose life it is, not in the hands of health care practitioners or medical practitioners. It is up to them to listen and for every individual to be empowered to make decisions, to have options to make choices about end-of-life planning, and for medical practitioners to act on that advice we have given them. I am very glad to support this bill.