Advance Care Directives (Review) Amendment Bill

Second Reading

Adjourned debate on second reading.

(Continued from 28 October 2021.)

The Hon. K.J. MAHER (Leader of the Opposition) (17:24): I rise to speak on this bill and indicate that I am the lead speaker for the opposition. The bill itself gives effect to legislative amendments arising from Professor Wendy Lacey's five-year review of the original Advance Care Directives Act 2013.

The original act, brought in by the then Labor government, was an important reform allowing South Australians greater determination over their future care and treatment. The bill before us seeks to implement all recommendations from Professor Lacey that require legislative change, including:

aiding the digital provision of advance care directives to medical practitioners;

clarifying that advance care directives, while not negating other forms by which an individual may identify their wishes, are the primary direction;

removing barriers to culturally and linguistically diverse communities using interpreters to assist with the advance care directives that were unintentionally included in the original legislation;

clarifying individuals may appoint as many substitute decision-makers as they so choose;

providing guidance on conditions that may be imposed on substitute decision-makers; and

removing the Office of the Public Advocate's powers that have not been utilised since the original legislation was enacted.

The opposition has consulted on this legislation and received a substantial amount of feedback from interested stakeholders. The feedback from stakeholders centred on three key aspects of the legislation. Firstly, in relation to interpreters, on the amendments to the interpreter requirements, the Aged Rights Advocacy Service, for example, stated:

We are concerned that, in the interests of ensuring that the relatively small number of persons in SA for whom a qualified interpreter cannot be sourced, the majority of those who will need an interpreter may be denied the protection of the requirement for a qualified interpreter in the preparation of their [advance care directive] ACD.

The Public Service Association raised concerns that related to the decision not to require a qualified interpreter in cases where English is not a first language. In relation to the second key area, it was in relation to the Office of the Public Advocate in referring a matter to SACAT. The Aged Rights Advocacy Service raised additional concerns regarding the government's amendments in relation to the referrals back to SACAT and claims that referrals could undermine confidence in advance care directives. This amendment was further flagged in consultation with the Australian Nursing and Midwifery Federation, which said:

We acknowledge that requiring the [Office of the Public Advocate] OPA to discontinue mediation and refer to SACAT in these scenarios has the potential to reduce public confidence in completing advance care directives, however, given the Lacey review identified this as a risk we seek clarity on how the [Office of the Public Advocate] OPA currently determines whether or not an alleged abuse is a misunderstanding or is reasonably suspected…

The Hospital Research Foundation expressed its support for this amendment. The third area is in relation to mental illness. I place on the record that Lived Experience Australia were at pains in their submission to note the potential impacts of advance care directive arrangements on those living with complex and serious mental illness, noting that care must be taken in upholding their rights and ensuring their wishes are respected.

In relation to the actual bill, I can indicate that it is the Labor opposition's position to support the bill. We then come to the amendment that the minister has filed, and I think we will deal with this later in the week in the committee stage, but I will place on the record that the issue of the amendment, as I believe it has for the Liberal Party, has been deemed a conscience issue for the Labor Party.

I think it is wise to separate this issue from the main bill, that is, have it as an amendment to the bill rather than a clause in the bill that could see the whole bill fail. So members of the Labor Party will have a conscience vote on the amendment itself. I might take the opportunity, while doing my second reading, to place on the record just briefly some of my thoughts that will influence me in how I vote on the minister's amendment.

The minister's amendment in effect states that, if health professionals come to the conclusion that a patient's medical condition or their medical treatment is a result of self-harm or a suicide attempt, an advance care directive will have no effect. This is a difficult question that brings into play a lot of different elements to do with medical ethics and the issue of suicide prevention, which we have discussed in this chamber and you, sir, have been a champion of for some time.

This issue also was one that was raised and discussed: the interaction between advance care directives and the ability to consent to medical treatment. The consent to medical treatment legislation certainly was raised for those members of the end-of-life choices committee that preceded the introduction of voluntary assisted dying legislation to this parliament and we spent some time on it.

I will ask the minister, when he moves the amendment, what is being sought to be addressed by the amendment? What are the cases that have given rise to this? I have had discussions with numerous practitioners who practise in areas that deal with end-of-life medical care and they cannot recall a case that this would attempt to solve, so I would ask the minister, when he comes to addressing his amendment, what are the situations that have arisen that have given rise to need this amendment?

The fundamental thing that I have concerns about is that it deviates from the idea of an advance care directive giving the will of a person who is not able to make their wishes known at the time. For example, if someone ends up in hospital as a result of harming themselves and are conscious, under the consent to medical treatment act, that individual is perfectly at liberty to refuse any sort of medical treatment or medical intervention, even if that refusal may result in that patient's death. If they are conscious and have the capacity and are in hospital, they can do that. If that same person is under the same circumstances in hospital but is not conscious, even if they would have chosen by virtue of what it says in their advance care directive not to have medical treatment, a medical practitioner can then step in and override it.

For me, it creates that fundamental problem of the advance care directive attempting to be the document that gives the will of the patient should they be conscious and able to give their views. If that patient was conscious and capable of giving their views, they would be able to refuse medical treatment, even if it resulted in their death, but by virtue of not being conscious, we do not give them that right. I think it goes to the heart of the purpose of advance care directives.

I do accept that this is a difficult one and there are many factors at play, but I think the way I will be voting is influenced by that fundamental idea that an advance care directive gives rise to the wishes of the patient, that if a patient could consent or, for that matter, not consent to medical treatment had they been conscious, which in this case they could do, if for nothing else by virtue of the consent to medical treatment act, then my starting point is they ought to be able to do that by virtue of an advance care directive.

The Hon. C. BONAROS (17:33): I rise on behalf of SA-Best to speak in support of the Advance Care Directives (Review) Amendment Bill, as introduced in this place last month. At the outset, on behalf of SA-Best I would like to acknowledge and thank Professor Wendy Lacey for the statutory review of the act that she completed in 2019. The Lacey review, as it has become known, made 29 recommendations, 22 of which were supported by the government. This bill seeks to implement the supported recommendations, and these are the result of extensive consultation, as I understand it, and academic input over an extended period in 2019, along with additional community consultation via the YourSAy website in 2021.

I note the Lacey review recommendation that interpreters be accredited, as per the requirements of witnesses under section 15 of the act, is not taken up in this bill because, based on the advice that we have, it could present an additional barrier for cultural and linguistically diverse communities. While using accredited interpreters is strongly encouraged, there will be circumstances when it is just not possible—in fact, where there may not even be an interpreter available. We need to be flexible and practical to facilitate clear communication of a person's wishes.

I also note, from the limited experience that I have had within the community around advance care directives, that this has been one of those issues around the requirement for translations and interpretation, and certainly from the discussions that I have had the people who I have worked with would welcome the move by the government in this regard because even the current requirements are considered overly burdensome. Making those even more difficult is certainly something that I think would not have widespread support, even though I acknowledge the reasons for that in the Lacey review.

I also accept community consultation indicated that the current arrangement where the Office of the Public Advocate mediates and undertakes dispute resolution should continue in preference to immediately referring the matter to SACAT. I accept the advice of the government in relation to that where, in particular, we may be talking about some of the same people from cultural backgrounds.

There is nothing preventing a referral to SACAT in this bill—that remains an option—but the OPA maintains discretion to refer or not. The approach of OPA is that education is better and educating those individuals who are having a difficult time navigating these processes is better than an immediate referral to SACAT, which is a much harsher avenue to go down. That is something that we support, for the reasons I have just outlined.

The bill proposes for electronic copies of advance care directives to be taken as valid directives. I think this is a sensible modernisation and provides clarity around the ability to have a number of substitute decision-makers, and is also a welcome improvement. I think even the form itself, based on the briefing that I had with the minister, is going to be altered so that there are actually—I think at the moment there are spaces for three substitute decision-makers and they are going to provide for more substitute decision-makers. Some people might want more than three: they might want five or six—I do not know—but certainly that has come out of the feedback. Even the form itself is going to be changed to allow for that.

I do look forward, though, to further reforms of this act to provide for advance care directives to be centrally registered and accessible, perhaps, as the minister indicated throughout our briefings, through a platform like My Health Record or a new national secure platform—if you are game enough to put your medical records on My Health Record, that is. I think it will be a big improvement to have a standardised, secure ACD registry to ensure they are easily accessible by health practitioners in hospitals, emergency departments, palliative care services, GP surgeries and ambulance services throughout Australia.

I am loath to say this, and it is a term that we hear very often from ministers from the government, but in this instance it is one that I agree with, and that is that I do not think this scheme is mature enough for that register at the moment and they would like to see it develop a little more organically—that is the term that this government likes to use—before we go down the path of prescribing it in legislation.

I have to say, even though that was one of the recommendations of the Lacey review, I think there are still some concerns about that, especially given that individuals might not always actually prepare an advance care directive. You might have people at hospitals who have literally written on the back of envelopes or napkins and it has created, I understand, up until this point, and will continue to create, some issues if we have a dedicated register at this stage of the operation of the act requiring those things to be on the register.

I think that is a sensible step to take. It is not something we would ordinarily back, but I am willing to take the advice that we have received so far and let this scheme mature a little and then potentially seek further reforms in terms of a register or, as I said, it might be dealt with at a national level and make a state-based register unnecessary. As I said, it will be a big improvement to have those standardised practices.

ACDs are an important tool to provide everyone with the comfort of knowing they have clear legal arrangements in place for their future care and, most importantly, the confidence of knowing these will be accessible and respected. There is one point that I will make before I turn to the amendment. It was raised at a session that was held previously in the legal profession that dealt specifically with advance care directives and probably speaks to the issue of the register on the flipside, if you like.

The legal profession, in its experience, or certainly the presenters at this particular session, did express some concern about this information being centrally kept on a register, because effectively they said if an individual has concerns about losing the capacity to make that decision-making then they should be waiting until the very last moments before they make available their advance care directive at a hospital, or wherever the case may be.

They are conversations that are taking place in the legal profession. I think the words were something to the effect of 'Keep your ACD locked in that safe until it is absolutely necessary to tell anyone you have one if you are concerned about your decision-making abilities.' That is something that I think we as a parliament must explore if they are concerns that are being raised by the legal profession, which deals with the practicalities of this, certainly more than we do.

I note the comments of the Hon. Kyam Maher in relation to the amendment that has been filed. I also note that that amendment was made, as I understand it, at the suggestion of the Chief Psychiatrist, Dr John Brayley. Certainly, I have correspondence, and I am sure other members do too, in relation to that amendment, outlining the concerns that Dr Brayley has and the reasons for this.

I think it is fair to say that this is a conscience vote amendment for both major parties, if I am correct. We will certainly have some questions for the minister in relation to some of the issues canvassed in that correspondence from Dr Brayley, but also more generally along the lines that the Hon. Kyam Maher has just outlined, when we get to that stage of the debate. With those words, I again acknowledge and thank Professor Wendy Lacey for the review, which has led us to this point, and look forward to the committee stage debate of the bill.

The Hon. N.J. CENTOFANTI (17:42): I rise in support of this bill and also in support of the Minister for Health and Wellbeing's amendment. Advance care directives are a legal document which allow an individual to make clear arrangements for their future health care. This includes outlining how you wish to manage decisions regarding your end-of-life preferred living arrangements and other personal matters.

Advance care directives allow individuals to think about their dying wishes, such as situations that they may want to avoid or that they would find unacceptable. They also allow individuals to communicate other end-of-life wishes, such as the intention to be an organ and tissue donor or considerations such as spiritual, religious or cultural traditions.

This bill forms part of the government's commitment to amend the Advance Care Directives Act 2013, following a review of the act conducted by Professor Wendy Lacey in 2019 in accordance with section 62 of the act. The bill, if passed, will make improvements in legislation, which in turn will increase the uptake of advance care directives, as committed by the Marshall Liberal government in 2018.

This bill proposes several amendments to the act, including the provision to make copies of advance care directives available to healthcare professionals electronically, to make it clearer that other acts and laws still apply, and to impose clearer requirements on interpreters. This bill will also make it clear that there is no limit on the number of substitute decision-makers who can be appointed, and will also include provisions for listing substitute decision-makers in order of precedence. Lastly, it will strengthen how adults who are vulnerable to abuse are protected by the Public Advocate during resolution of disputes.

I am an advocate for preserving and saving life. The amendment proposed under section 36A is deeply personal and is something that I have grappled with. I do not stand here and pass any assumptions on why a person might attempt to take their own life. What I do stand for here in this place is the assumption that every life is equally important and that we must ensure there is clarity for health practitioners in providing life-saving treatment following an attempt to suicide.

Individuals make personal decisions and an attempt to cause serious self-harm may be a call out for help and may not necessarily mean that person wants to die. The Advance Care Directives Act 2013 ensures that any directives in relation to health care and the provisions relating to end of life are executed only under the most stringent circumstances. This protects the most vulnerable in our community and ensures that the person subject to the advance care directive fully understands the provisions being made.

Affirming life, promoting quality of life, treating the patient, supporting the family, should remain the treating clinician's primary focus. I believe that an attempt on one's own life or to cause serious self-harm should rightly suspend any advance care directive and, as such, I again indicate that I am supportive of the Minister for Health and Wellbeing's amendment introduced under this bill.

Debate adjourned on motion of Hon. I.K. Hunter.