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House of Assembly - Fifty-Fifth Parliament, First Session (55-1)
2023-02-09 Daily Xml
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Advance Care Directives (Review) Amendment Bill

Second Reading

Adjourned debate on second reading.

(Continued from 19 October 2022.)

Ms PRATT (Frome) (16:04): I rise to speak on this bill and indicate that I am the lead speaker for the opposition. An identical bill was introduced by the Marshall Liberal government and passed the Legislative Council in November 2021. This bill was introduced in response to a statutory review of the Advance Care Directives Act, conducted by Professor Wendy Lacey in 2019. The bill seeks to implement a number of the recommendations of Professor Lacey, including:

to clarify that a person may have as many substitute decision-makers as they see fit;

to include references to digital copies of advance care directives (ACD) documents in the act;

to allow healthcare practitioners to rely on a digital copy of an ACD as a legally valid copy;

to impose clearer requirements on interpreters;

to make it clearer that other acts and laws still apply; and

to remove powers that have not been utilised by the Public Advocate since the legislation was enacted.

The changes proposed by this bill, in addition to being largely consistent with the recommendations of the Lacey review, also include amendments to the requirements around the accreditation of interpreters and referral of matters to the South Australian Civil and Administrative Tribunal (SACAT) by the Public Advocate, which were the result of consultation with key stakeholders by the former government.

Noting that this current bill is identical to that introduced by the former government, one does have to ask why it has taken this government nearly 12 months to reintroduce it. These reforms could already have been in place some time ago, benefiting our community and medical practitioners, as well as strengthening the laws around ACDs.

There are a number of pieces of work that cannot be actioned until this bill has passed, so it is quite disappointing that the government has left this bill to languish, particularly given the government's underwhelming legislative agenda and low number of sitting days to date. I would argue that this is important reform, and we just want the government to get on with it.

While the majority of this bill remains identical to the bill introduced by the former government and passed in the other place in November 2021, there is one important provision that has been omitted by this government which relates to ACDs in the context of suicide attempts or self-harm. The opposition is concerned with this government's omission, and I give notice that I intend to move an amendment in committee stage which aims to rectify this omission allowing for it to be a conscience vote for all members. These exact concerns have also been raised by critical stakeholders such as the South Australian Ambulance Service, and Dr John Brayley in his role as the Office of the Chief Psychiatrist.

While I recognise and respect that the Australian Medical Association has written in recent months to the minister raising their objection to the need for such an amendment due to the provision of section 13(1a) in the Consent to Medical Treatment and Palliative Care Act 1995, the same protection does not exist for paramedics and first responders. Our frontline staff deserve clarity and protection and, while this government claims to be the champion of our ambos, they are suspiciously silent on this front.

In fact, in the most recent summary to a parliamentary briefing session by the Office of the Chief Psychiatrist, it was stated that, and I quote:

…non-passage of the proposed amendment would have the practical effect of requiring first responders and medical staff to refrain from providing life-saving treatment in any cases of suicide attempt where the patient has prepared an ACD refusing medical treatment.

It continues:

…the consequential repeal of Regulation 12A would create a new policy paradigm in South Australia, in which Parliament would endorse the binding nature of an Advance Care Directive (ACD) in suicide attempts. Having had a suicide prevention requirement, and then removing this will have consequential effects.

The Office of the Chief Psychiatrist added that:

Parliament has carefully put in place parameters and limits to the application of the new Voluntary Assisted Dying Scheme. These parameters include a number of safeguards. Non-passage of the proposed amendment to the ACD Act would have the practical effect of signalling to the community that an outcome of death by suicide attempt is supported as long as a valid ACD is in place.

So I echo the sentiments referenced that South Australia has earned itself national praise for the bipartisan implementation of the former Liberal government's introduction of our nation-leading Suicide Prevention Act 2021 and that the original intention of this act would be undermined by an ACD legislative scheme that facilitates suicide by stealth in this state. Advice from the Chief Psychiatrist, Dr John Brayley, is very clear. He states:

The proposed amendment simply makes a Do Not Resuscitate (DNR) provision of an ACD non-binding. It provides time for healthcare workers, family and ethics committees to consider all options and motivations, even if the ultimate decision is to withdraw life-saving medical support.

It is clear that suicide prevention is important to South Australians. It took this house 16 attempts over 27 years to deliver the carefully considered limits of the voluntary assisted dying scheme. I commend all my colleagues in this house, on both sides, for their compassionate contributions at the time. Today I wear with pride a Youth Insearch pin, recognising that next Monday we will mark End Youth Suicide Week, which is prevalent among our young people.

There is further opportunity for real reform. Following fresh consultation on the bill, in particular with the Law Society, the Speirs opposition has plans to move an amendment to remove the order of signing provisions currently required under the act. In our view, the rigid order of signing provisions provides little additional assurance that substitute decision-makers actually understand their roles and responsibilities. On the other hand, they significantly increase the risk that an ACD will not be signed by the principal in time for when it is needed.

Currently, the Advanced Care Directives Regulations 2014 (SA) require a substitute decision-maker to complete and sign the relevant part of an ACD form prior to an ACD being executed by the person making the appointment. The rationale is that this sequence of signing will ensure that the person making the appointment is able to inform the substitute decision-maker about their values.

However, in our view, the rigid order of signing provisions provides little assurance that substitute decision-makers (SDMs) understand their roles and responsibilities. On the other hand, they significantly increase the risk that an ACD will not be signed by the principal—I have repeated that phrase. My apologies, but I think it is important to double-down on this point. Following fresh consultation on the bill, particularly with the Law Society, there is an opportunity to provide reform.

The Law Society has raised concerns in relation to the difficulties the current mandated signing order gives rise to, particularly the potential for the SDM to not clearly understand and therefore be unable to make a properly informed decision to agree to the requests of the person making the appointment. The society has also raised concerns that the current order of signing causes unnecessary delay in the finalisation of an ACD where the person making the appointment is extremely ill or is becoming increasingly forgetful and may lose capacity.

They also highlight the difficulties for practitioners and clients living in rural, regional and remote areas in getting ACDs finalised on short notice—and I am sure the house appreciates my attention to this space. Furthermore, I am advised by the legal profession that measures such as digital signatures will not be adequate in addressing these concerns, as often elderly clients face a number of barriers in accessing the technology. Therefore, I will be moving an amendment on behalf of the opposition that addresses the concerns raised by the Law Society in relation to the current mandated order of signing.

As this bill mirrors our own, which passed in the other house in November 2021 before it lapsed, it is not my intention to heavily debate the minister by interrogating his amendments, which in principle we support.

In summary, I reiterate that the opposition supports this bill. It is a bill that we introduced from government in response to Professor Lacey's 2019 review of the Advance Care Directives Act. This bill provides a welcome opportunity to make further reforms that would be of immediate benefit to our community.

Mrs PEARCE (King) (16:15): I strongly believe in supporting people to live healthy, independent lives wherever possible and to encourage dignity to a person's life in every stage of their life. As we near the 10-year anniversary of when the Advance Care Directives Act 2013 passed the South Australian parliament, we are back to discuss how we can build on this.

What we are discussing here today are changes that have come about in response to a statutory review of the act, which was conducted in 2019 by Professor Wendy Lacey. It seeks to amend the Advance Care Directives Act to better enhance its operation in line with our commitment to continuing to implement the recommendations of the Lacey review.

The review targeted consultation in two ways: firstly, with community members with lived experience of advance care directives, and secondly, with substitute decision-makers. Did you know, Mr Acting Speaker, that the take-up of ACDs is still relatively low? In fact, research into the uptake, outcomes and utility of advance care planning in Australia is limited. The available research suggests that the practice of advance care planning in Australia is not common, particularly when compared with other planning documents such as wills.

In 2017, an Australian study assessed how many people aged 65 years or over had an advance care directive on file. The study found a rate of 48 per cent in residential care, 16 per cent in hospitals and 3 per cent in general practices. Most of the directives were non-statutory documents, and fewer than 3 per cent had a statutory advance care directive outlining preferences for care, and only 11 per cent had a statutory advance directive appointing a substitute decision-maker.

I am pleased to learn, however, that prevalence studies conducted in recent years throughout Australia tend to indicate that the uptake of ACDs is improving and that South Australians are more likely to have an ACD in place compared with the rest of Australia.

However, at focus groups conducted as part of the review, anecdotal feedback indicates that the uptake rate for ACDs among older South Australians could be as low as 10 per cent among some groups, particularly those who are experiencing disadvantage or speak English as a second language.

It is important to reflect on what an aged care directive is. The act was originally created to enable a person to make decisions and give directions in relation to their future health care, residential and accommodation arrangements and personal affairs:

to provide for the appointment of substitute decision-maker or decision-makers to make such decisions on behalf of that person;

to ensure that health care is delivered to a person in a manner that is consistent with their wishes and their instructions;

to facilitate the resolution of disputes relating to advance care directives;

to provide protections for health practitioners and other persons giving effect to an advance care directive; and

for other purposes.

The seven objects of the act that are set out include the following:

to enable competent adults to give directions about their future health care, residential and accommodation arrangements and personal affairs;

to enable competent adults to express their wishes and values in respect of health care, residential and accommodation arrangements and personal affairs, including by specifying outcomes or interventions that they wish to avoid;

to enable competent adults to allow decisions about their future health care, residential and accommodation arrangements and personal affairs to be made by another person on their behalf;

to ensure, as far as is reasonably practicable and appropriate, that health care that is provided to a person who has given an advance care directive accords with the person's directions, wishes and values;

to ensure that the directions, wishes and values of a person who has given an advance care directive are considered in dealing with the person's residential and accommodation arrangements and personal affairs;

to protect health practitioners and others giving effect to the directions, wishes and values of a person who has given an advance care directive; and

to provide mechanisms for the resolution of disputes relating to decisions made on behalf of those who have given an advance care directive.

Our government is committed to continuing to implement the recommendation of the Lacey review to be able to improve the functioning and update of the advance care directives in South Australia. As such, this bill here today includes amendments on the following: the inclusion of references to digital copies of ACD documents; interaction with other acts and laws; giving advance care directives where English is not the first language; requirements in relation to appointment of substitute decision-makers and their empowerment; resolution of disputes by the Public Advocate; and referral of certain matters to tribunal.

This bill will make amendments to the act such as the inclusion of references to digital copies of advance care directive documents which seek to improve accessibility to advance care directives by making it clearer that digital copies of advance care directives are legally valid copies. Giving advance care directives where English is the not the first language will provide additional safeguards for people who require an interpreter when making an advance care directive so that interpreters are subject to eligibility criteria, preventing potential for coercion and undue influence upon the person making the advance care directive.

It will clarify the requirements in relation to the appointment of substitute decision-makers and their empowerment, clarifying that there is no limit to the number of substitute decision-makers that can be appointed, and that the person making the advance care directive can empower their substitute decision-maker to make decisions separately or together, and in order of preference, if that person so wishes to appoint them in that way.

This bill also removes powers from the Office of the Public Advocate, which I note have never been exercised, and through consultation there was broad agreement including from the Public Advocate that the powers need to be removed. To guide implementation of the recommendations from the review, an advanced care planning oversight group and a working group were established by the Department for Health and Wellbeing. This has ensured that the implementation has been overseen by a broad range of stakeholders across the health, aged, disability, legal and community sectors, having involved the Australian Medical Association, Council on the Ageing and the Legal Services Commission of South Australia.

As recently as last year, our government, through the Department for Health and Wellbeing, held a six-week public consultation spanning from April into May on how we can best redesign this project. Consultation also involved the use of focus groups with vulnerable communities to understand the enablers and barriers to completing an advance care directive form because it is important we think about everyone that this can impact including their families, friends and communities, because we want these amendments to the Advance Care Directives Act to help to improve accessibility, strengthen safeguards and provide clarity to the act.

It is so important that we ensure that legislation like the Advance Care Directives Act is at its best because advance care directives are so important to not only those who have them but their families and the health professionals providing them the care that they need. That is because situations that require an advance care directive impact not only the individual but our loved ones as well.

It ensures that the decisions being made about what medical treatments we receive are those that will align with our values and beliefs. With an advance care directive in place, our loved ones are spared additional levels of stress over and above what can already be an extremely stressful time, as they can make those decisions with the wishes and requests in mind.

As someone who has lost someone incredibly dear to my heart, not a day goes by without thinking about how I could have helped to make his life better, nor does the grief of losing him ever diminish; we just get better at carrying it.

I know I am not alone here in experiencing a significant loss, and I am sure we would all agree that prioritising the health and wellbeing of our loved ones during their lives is paramount, as is providing them with dignity each and every step of the way. This is why our government supports strengthening the advance care directive legislation to support all South Australians to make clear legal arrangements for their future health care, and to increase uptake of advance care directives so more people can benefit from them should they ever need it.

Ms CLANCY (Elder) (16:23): I rise today in support of the Advance Care Directives (Review) Amendment Bill 2022. This bill seeks to amend the Advance Care Directives Act 2013 so that all South Australians can continue to make clear legal arrangements for their future health care. Advance care directives empower members of our community to give direction in relation to their future health care. Such directions could include accommodation arrangements and personal affairs, appointing substitute decision-makers, ensuring health care is delivered in a manner consistent with the wishes and values of an individual, and that is just to name a few.

When I worked as Minister Mark Butler's adviser for ageing during the Rudd-Gillard government, we had the privilege of hearing from many people about what was acceptable to them as they came to the end of their life and what was not.

Often, these were very focused on physical and medical circumstances, but one stands out very clearly, one that was a little different or a lot different. A man in Melbourne had in his ACD that in his last few hours of life he wanted the 1987 VFL grand final playing. A staunch Carlton supporter, he wanted to be listening to them win as he passed away.

It is imperative that our government continue to support the community and health practitioners to implement these varied wishes by ensuring legislation is up to date and appropriate for achieving compliance with the act as legislated almost 10 years ago.

In 2019, the Department for Health and Wellbeing engaged Professor Wendy Lacey to review the Advance Care Directives Act. I understand Professor Lacey consulted extensively, including targeted consultation with interested organisations, people and professions, in addition to the opportunity for community contribution, conducting the review over a 10-week period.

The Lacey review made 29 recommendations, which were tabled in parliament later that year. The former government tabled their response to the review in July 2020, supporting in full or in principle 22 of those recommendations. The Malinauskas Labor government is committed to continuing to implement the recommendations of the Lacey review to improve the functioning and uptake of advance care directives in South Australia.

I would like to take this opportunity to thank the Advance Care Planning Oversight Group and the working group established by the Department for Health and Wellbeing for their contributions in guiding the implementation of the recommendations of the review. I would also like to thank Sandra, an advance care directive consultant in my electorate who took the time to talk to me one very hot day when I was out doorknocking to share with me some of her extensive knowledge and experiences. She also kindly offered me some homemade cordial, which was exceptional, and a hay fever tablet because I am always sniffling from hay fever when out doorknocking.

The bill seeks to make a number of improvements to advance care directives, all of which are sensible and ensure we can continue to provide autonomy to South Australians in their future health care. Such reform includes improving accessibility to advance care directives by making it clear that digital copies of an advance care directive are legally valid copies. This provides greater confidence to clinicians and ensures that the healthcare wishes of our community are honoured.

The bill also provides additional safeguards for anyone who needs an interpreter while completing their advance care directive. Amendments included will provide additional eligibility criteria for interpreters to protect our community from the potential of any coercion or undue influence while making an ACD.

We seek to clarify that there is no limit to the number of substitute decision-makers who can be appointed in an advance care directive. South Australians will be empowered to allocate their substitute decision-makers to make decisions separately and/or together and in order of preference, should they wish to appoint them in that way.

The purpose of the Advance Care Directives Act has always been to protect the autonomy of South Australians who lose their decision-making capacity, which will sadly happen to most of us or someone we love. An advance care directive gives people like my friend's mother, Jenny, a sense of wellbeing, knowing that decisions around end of life would ultimately be hers. She shared her advance care directive with her daughters and discussed her wishes with me. This simple yet powerful piece of paper helped her daughters navigate health decisions and offered both her and her daughters comfort when having to decide on life-extending treatment options.

Five years ago, at 60, Jenny was given six to 18 months to live, after being diagnosed with glioblastoma, an aggressive brain cancer. In the months following diagnosis, she attended Exit International forums with Philip Nitschke, undertook medical cannabis trials in Sydney and advocated for several life-extending drugs to be added to the Pharmaceutical Benefits Scheme. Jenny took every legal drug possible that would extend and provide quality of life.

Jenny also had an advance care directive in place with a 'do not resuscitate' plan should a potentially catastrophic medical episode have occurred. Jenny carried this paperwork with her every day for five years, even just for a walk around the block, a quick trip down to the local shops or even to our book club. Above all, this woman valued quality of life, and her advance care directive gave her peace of mind.

Through her directive, Jenny was able to communicate her preferences for care if, for any reason, she was no longer able to communicate them verbally or otherwise herself. In having an advance care directive, she also protected her family from having to make any harrowing decisions on her behalf. Jenny's advance care directive did ultimately assist her doctors and her family in making life-ending decisions—decisions that she would ultimately have been comfortable with. Jenny passed away peacefully and on her terms, surrounded by her loving family, just a couple of weeks ago.

An alternative end to this story is one where Jenny might have found herself in decline with no prospect of improvement. Suicide, sadly, was at some point in her five-year journey a considered option, because voluntary assisted dying was not in effect at this time. Resuscitation was not something Jenny considered to be in her best interests: she was terminal and there was no further medical treatment available.

While it was not available in time for Jenny, relief for so many patients and patients' families was the passing of legislation to provide voluntary assisted dying in South Australia. This legislation will see people in similar situations to Jenny's no longer having to contemplate suicide. It offers an alternate and practical approach to end-of-life care for these people. It furthers efforts in suicide prevention and will protect first responders.

As the Premier's Advocate for Suicide Prevention, it would be remiss of me not to discuss the amendment to this bill being proposed by the opposition—an amendment that is supported by the Chief Psychiatrist and one I have discussed with both him and the Suicide Prevention Council.

South Australia has garnered praise from across the country for our nation-leading Suicide Prevention Act 2021. The act fosters a bipartisan, whole-of-government, whole-of-community focus on suicide prevention. At the heart of the Suicide Prevention Act was the establishment of a Suicide Prevention Council. The composition of the council, as prescribed by the act, ensures the representation of lived experience. The council is made up of priority groups including Aboriginal and Torres Strait Islander people, LGBTQIA+ community members, culturally and linguistically diverse groups, veterans, leading researchers and clinicians, leaders from the non-government sector, primary health networks, and first responders.

In my capacity as chair and as the Premier's Advocate for Suicide Prevention, I have both the privilege and opportunity to discuss professional and community opinion on prevention ideas and ideals. Through the council, and in collaboration with suicide prevention networks, local government and industry groups, South Australia has the means to collectively deliver meaningful change and reduce deaths by suicide and suicide attempts. I do not wish to pre-empt any further discussion on the amendment proposed by the opposition; however, I do welcome further discussion during committee.

I really value the importance of advance care directives. About 10 years ago, my mum asked me if I would be her medical power of attorney. Sucked in, brothers and sister! I said, 'Absolutely, as long as you have an advance care directive in place.' At that time, mum must have decided she was too busy to do one, so instead she just asked somebody else to be her medical power of attorney. If mum is listening, I am going to give you a call after this and make sure you actually have finally gotten around to putting together an ACD.

As a strong supporter of ACDs and voluntary assisted dying, as well as being the Premier's Advocate for Suicide Prevention who wants to do anything I can to reduce avenues that make suicide easier, I find this amendment quite challenging. This is a difficult discussion for our parliament, but a discussion we should not shy away from. I have the confidence in this place to legislate protection of the medical autonomy of South Australians and to enhance suicide prevention.

Ms WORTLEY (Torrens) (16:33): I rise to speak on the Advance Care Directives (Review) Amendment Bill 2022. To say that these amendments are needed reform is an understatement. On reading Professor Wendy Lacey's statutory review of the act, which was conducted and completed in 2019, the report team wrote of the community's quite staggering response to being invited, on relatively short notice, to provide input for change.

I have heard of many instances where constituents have been caught up helplessly trying to alleviate circumstances that could have been better for those at the worst time in their lives. I know from constituents that this bill, and what it sets out to achieve, will be welcomed by many in the Torrens and wider community.

We have a duty of care to make sure that there is more than adequate understanding of what an advance care directive is, what it means for a patient and their family, and how it is to be instituted. That is what these recommendations set out to do. Part of the problem has been that people only learn about how important an advance care directive is through the experiences with a loved one who did not have one in place. We know the current advance care directives form, in particular the do-it-yourself kit, is considered by many to be complicated and to act as a deterrent in many cases. These are the practical things that this bill seeks to address.

Professor Lacey recognised in her review that it was unrealistic to expect that a statutory advance care directive could possibly address all scenarios or situations. The Malinauskas Labor government is committed to continuing to implement the recommendations of the Lacey review to improve the functioning and uptake of advance care directives here in South Australia.

We live in a digital world, and this bill aims to help the community and the health system come into the digital age by allowing the use of digital copies of certified ACDs. This bill will ensure that medical practitioners and hospital staff will be entitled to rely on the purported validity of an advance care directive contained on a patient's My Health Record or a voluntary register for ACD, as long as it improves the level of compliance with the necessary evaluations.

I am happy to see that there is also provision for more substitute decision-makers in advance care directives within this bill. These appointments are consistent with the spirit of the legislation, including the desire to empower people to exercise self-determination with regard to their future care, accommodation and personal matters. Life changes by the minute and this change reflected in the bill will give the community confidence that they will have people around them to help them when the going gets tough. These will be people they trust, as they see fit, as time permits.

The electorate of Torrens, which I represent, is as diverse as it is wide. I speak often on this topic and the tapestry of languages, food and culture that inhabit our suburbs. It is of particular interest to me to see that there is a section of this bill which will clearly require duly qualified adult interpreters of the relevant language to enable and witness an advance care directive from the time it is implemented. At present, the use of interpreters under the act is quite relaxed. It makes no mention of interpreter assistance. Only the ACD form and the DIY kit currently address this subject.

So what happens at present is an interpreter completes a statement, attesting to the fact that they have read and understood the advance care directive information statement to the person making the ACD while also attesting to the fact that the person making the ACD understands it. There has not until now been any requirement for the interpreter to be qualified, or that they are an adult, or that they are legally at arm's length from the person making the ACD.

To line up with section 15 of the act, witnesses cannot also be substitute decision-makers or have an interest in the estate of the person giving the advance care directive. It also makes sense that the witness cannot be their health practitioner or occupy a position of authority over them such as someone in authority in an aged-care facility.

We are talking about the most vulnerable people in our community at a stage in life when they need our help and protection. Whilst the former government was mentioned in Professor Lacey's report for its shortsightedness in its decision to cut two positions directly related to educating the public about advance care directives from the health portfolio, this government is committed to allocating resources to support that education and providing a widespread awareness campaign. There will be a significant effort to do this across the community and across the state.

Since Professor Lacey's review recommendations were handed down to the parliament in 2019, the Department for Health and Wellbeing has set up a working group with an advance care planning oversight group to guide the implementation of these recommendations. It means that a broad range of stakeholders are consulted from within and outside of the professional health arenas: the aged sector, disability, legal and community sectors, including the Australian Medical Association, Council on the Ageing and the Legal Services Commission of South Australia. Then, from April of last year there was a six-week public consultation via YourSAy on the advance care directive redesign project.

In August, DHW hosted an inaugural community forum to bring together the key local government partners to deliver a peer-led training model across local governments in South Australia. This partnership consists of four councils in the southern Adelaide metropolitan area, three councils in the western Adelaide metropolitan area and three councils in the Fleurieu region. It will expand to the Murray Mallee region later this year.

There was new branding and a new look and feel for the Plan Ahead Week launched in September last year to coincide with the annual awareness-raising campaign to bring the community up to speed about the benefits of early planning and the legal tools available. The redesign of the advance care directive form is key to making life easier for all South Australians to complete and take it up. When we get this right I am sure there will be a collective sigh of relief across the state.

The final point I would like to make is that through consultation, and with broad agreement, including from the Public Advocate, the bill before us sees the power of the Office of the Public Advocate—albeit powers that have never been exercised—removed.

I commend the strengthening of the advance care directive legislation in this amendment bill, for the benefit of all South Australians, to the house.

Ms THOMPSON (Davenport) (16:41): I rise to offer my support for the Advance Care Directives (Review) Amendment Bill 2022. This bill seeks to amend the Advance Care Directives Act 2013 to improve accessibility, strengthen safeguards, and clarify the original intent of the act.

Sometimes called 'a living will', an advance care directive outlines a person's preferences for future care along with their beliefs and values. It also allows a person to formally appoint a substitute decision-maker for when they can no longer make decisions themselves. When loved ones are left making decisions on behalf of the people they care most about, it can be particularly difficult to decide what treatment is best.

An advance care directive can assist in these times. It enables us to make some decisions now about the health care we would or would not like to receive if we were to become seriously ill and unable to communicate our preferences to make treatment decisions. Advance care planning assists in removing some of the burden of decision-making from loved ones, and helps them and the health providers to respect treatment preferences.

The amendment bill enhances the operation of the act in response to the review that was conducted by Professor Wendy Lacey in 2019. The Lacey review made 29 recommendations that were tabled in parliament on 1 August 2019. This government is committed to continuing to implement the 22 recommendations of the Lacey review that were supported to improve the functioning and uptake of advance care directives here in South Australia.

At present the use of interpreters under the act is quite relaxed. The bill includes extra safeguards for people who require an interpreter when making an advance care directive by ensuring that interpreters are subject to eligibility criteria that prevent the potential for coercion and undue influence upon the person making the directive.

The Lacey review determined there was a reluctance to rely on the validity of digital copies, so this bill seeks to improve accessibility to advance care directives by making it clearer that digital copies are legally valid, providing greater confidence to our clinicians.

Those in my community who have spoken with me about advance care directives have, in most cases, been those who have been diagnosed with dementia or whose family members have been. I can only imagine how terrifying it would be receiving that diagnosis, and having to accept the likelihood that there will come a time when you are unable to make decisions for yourself and, not only that, but living with a feeling that you are burdening the people you love the most.

My grandmother lived with dementia for 10 years before she passed and for most of that time she was physically healthy, but she rapidly lost the ability to remember, reason and communicate altogether. People at the end of their life may no longer be able to make or communicate choices about their health. If there are no advance care planning documents in place and the family does not know the person's wishes, it can be extremely difficult. Having an advance care directive in place offers comfort in knowing that our wishes will be respected and our loved ones will not be burdened.

This bill clarifies that there is no limit to the number of substitute decision-makers that can be appointed and that the person making a directive can empower their substitute decision-makers to make decisions separately and/or together and in order of preference if they wish to appoint them in that way. The bill also removes powers from the Office of the Public Advocate that have never been exercised, and through consultation there was broad agreement—including from the Public Advocate—that these powers should be removed.

To guide the implementation of the recommendations of the review, an Advance Care Planning Oversight Group and a working group have been established by the Department for Health and Wellbeing. This ensures the implementation is overseen by a broad range of stakeholders from the health, aged, disability, legal and community sectors, including the Australian Medical Association, Council on the Ageing and the Legal Services Commission of South Australia.

To ensure we are continuously improving for our communities, the Malinauskas Labor government is committed to quality public consultation. After forming government, the Department for Health and Wellbeing held a six-week public consultation on the advance care directives redesign project. The consultation process included online feedback, as well as focus groups with vulnerable communities, to understand the enablers and the barriers to completing the advance care directive form. The redesign project will see a new form, DIY guide, website and promotional materials developed and launched following the passing of the amendment bill.

This government supports improving and strengthening the advance care directives legislation to provide comfort and support to all South Australians to make clear arrangements for their future health care. I commend this bill to the house.

Ms HOOD (Adelaide) (16:46): I rise to speak in support of this bill. While we do not have control over how we enter this world, we should have as much control as possible over how we plan to leave it or how we wish to be cared for or treated when we can no longer communicate that for ourselves. An advance care directive makes it easier for others to know what our wishes are when we are unable to make these decisions. It can give us peace of mind knowing that our wishes are known and will be respected if others need to make decisions for us.

Having this agency over our own lives is so incredibly important, and we need to ensure that our legislation is robust to ensure it achieves this. That is why this amendment bill seeks to improve the legislation governing advance care directives so that safeguards can be strengthened, accessibility can be improved and there is more clarity regarding the original intent of the act.

As we have heard today, in 2019 Professor Wendy Lacey conducted a statutory review of the Advance Care Directives Act 2013. The review produced 29 recommendations, which were tabled in the parliament on 1 August 2019. This amendment bill seeks to enhance the operation of the act by implementing the recommendations from the Lacey review. Proposed amendments to the act include:

inclusion of references to digital copies of advance care directive documents, which is incredibly important for the 21st century;

interaction with other acts and laws;

giving advance care directives where English is not the first language;

resolution of disputes by the Public Advocate; and

referral of certain matters to the tribunal.

The bill also removes powers from the Office of the Public Advocate that have never been exercised, and through consultation there was broad agreement, including from the Public Advocate, that these powers be removed.

I am proud the Malinauskas Labor government is committed to continuing to implement the recommendations of the review to improve the functionality and uptake of the advance care directive process in South Australia. These proposed amendments will increase the accessibility to advance care directives, bringing them into the modern age by making it clearer that digital copies of advance care directives are equally legally valid copies of the document. Further, the bill proposes additional safeguards for people who require an interpreter when making a directive. This prevents the potential for coercion and undue influence upon a person making their advance care directive.

As the bill aims to clarify, there is no limit to the number of substitute decision-makers who can be appointed to an advance care directive, and it is important that the person making the directive is fully aware that there is great flexibility when drafting their own wishes, such as substitute decision-makers making decisions separately and/or together and in order of preference, if they so wish.

After forming government last year, I was pleased South Australians were encouraged to share their views and feedback on this vital element of healthcare decision-making. During the six-week public consultation from April last year, the Department for Health and Wellbeing also hosted focus groups with vulnerable communities to understand barriers to completing the advance care directive form and process.

The passing of this amendment bill will make it easier for South Australians to complete advance care directives and will ultimately increase accessibility and uptake of advance care directives. I, along with the Malinauskas Labor government, support strengthening advance care directive legislation to support all South Australians and their loved ones to make clear legal arrangements for their future health care. With those comments, I commend the amendment bill to the house.

The Hon. A. MICHAELS (Enfield—Minister for Small and Family Business, Minister for Consumer and Business Affairs, Minister for Arts) (16:50): I also rise this afternoon to speak in support of the Advance Care Directives (Review) Amendment Bill 2022. I do so with the benefit of being a lawyer who has practised in this area for a little bit over 20 years. The introduction of the Advance Care Directives Act 2013 actually gave us, as succession planning lawyers, some significant improvements in this space.

Commencing on 1 July 2014, people were no longer able to appoint guardians and medical attorneys. They were replaced by substitute decision-makers under the Advance Care Directives Act. Fortunately, at that point in time when it was a substantial part of my practice, we did have the benefit of some transitional rules, which means that if you have an old medical power of attorney it still remains in effect through those transitional mechanisms.

Advance care directives provide people with the ability to set out their values and their wishes regarding their future health care and other personal matters. This really does help people who are appointed as substitute decision-makers to know what their appointor wants in the situation where they lose capacity to make those decisions themselves. Substitute decision-makers do play a vital role in making decisions on behalf of someone in relation to their health care and their lifestyle needs in the case of a lack of capacity. It is a role that no doubt some of us in the chamber have had to carry out for parents, grandparents, other family members or close friends. It is a serious role and one in which people should make themselves aware of their obligations.

Advance care directives also provide an opportunity to describe any healthcare interventions that people may refuse and the circumstances in which they want those decisions made. Should the appointor of the advance care directive lose capacity, the substitute decision-maker, obviously when making decisions in relation to that person, needs to reflect on whether the same decision would have been made by the appointor in the same circumstances, as far as reasonably practical. That is the test.

In the event that an appointor is silent on a particular decision, the substitute decision-maker really does have to act consistently in the proper care of the person and seek to protect their interests. Importantly, a substitute decision-maker should not seek to restrict the rights and the freedoms of the appointor.

The ACD did actually make it easier for appointors to consider their options and provide instructions that better reflected their wishes when compared to the old medical power-of-attorney forms that we used to have. However, as with everything, there is room for improvement, and that is what this bill seeks to do. It seeks to make a number of improvements to the advance care directives by enhancing accessibility, boosting safeguards and clarifying the original intent of the act. As we have heard in this chamber this afternoon, the ACD Act was reviewed by Professor Wendy Lacey in 2019, resulting in the Lacey review with 29 recommendations.

The Malinauskas Labor government is committed to improving advance care directives in South Australia, and we are committed to improving the function and the ease of use of the advance care directives form. Importantly, we are committed to promoting the use of advance care directives in the community, with the aim of ensuring that all South Australians' desired health wishes are taken into consideration when obtaining medical care. Some of the amendments include:

reference to using digital copies of the advance care directives documents;

clarifying how the ACD Act interacts with other laws in South Australia;

making provisions for people when English is not their first language;

changing the requirements in relation to the appointment of substitute decision-makers;

issues around the Public Advocate and dispute resolution; and

referring matters to SACAT.

The current ACD form only allows for three substitute decision-makers. I can say that, when I was practising, the inability and restrictions of that form to have more than three substitute decision-makers actually did cause a significant amount of distress in practice. Often people had a spouse and, for example, three or four children. To explain to them that they could only pick their spouse and two of their three or four children actually caused some concern, because it was very difficult to explain the rationale behind that logic. We will see that benefit through this amendment bill.

The bill obviously will not restrict the number of decision-makers that can be appointed. That will make it much easier to use in practice, particularly for legal practitioners being able to guide their clients in that way. However, having said that, in practice I often said to my clients the less people argue about your decisions, the better. There is some benefit in not going big on how many people you have at that point in time.

As I said, where an appointer names their spouse and their children, they can now have a preferential order for decision-making and include all of their children if that number now exceeds three. They do often appoint their spouse as the primary decision-maker and then say that their children are the alternate if the spouse is not able to act in that time.

We will continue to be able to have joint and separate substitute decision-makers. It could be two of three children as a majority, or you could specify all of the three children to act, for example, and there can be an order of preference. This area of practice, Mr Speaker, you are probably well aware, can actually be quite emotionally draining at the best of times. I found the most difficult situation was where you had clients who came to you after they have had a medical diagnosis, having left their estate planning for way too many years to pay attention to it. They came when they had a cancer diagnosis or something like that and had to put these documents in place. It is actually a really stressful situation for the family to guide them through. If anyone is actually listening to us this afternoon, I highly encourage everyone to make sure their estate planning documents are up to date.

The bill also goes further in making sure that electronic copies of ACDs are legally valid documents. Mr Speaker, you are well aware that most often these documents are in deep safes at lawyers' offices and hard to access in an emergency situation such as when you would use an advance care directive. It is less of a problem for wills, but for advance care directives and powers of attorney, having quick and easy access to those documents is often highly critical. To be able to use electronic copies of ACDs is going to be very useful. Clinicians in the past were reluctant to rely on digital copies of ACDs, so this bill will give them greater confidence to be able to use those electronic copies. That is going to be a welcome change not only for the clinicians but for the substitute decision-makers themselves.

The bill will also provide safeguards for people who either speak English as a second language or are non-English speakers, which is many of the people in my electorate. I am very grateful that in my electorate I have staff who are justices of the peace. Akram and Chloe in my electorate office are both JPs. I also have a volunteer, Sophia, who has been helping in my electorate office since I first became the member for Enfield four years today. It is useful to have that service in our electorate office. Often in my electorate office we have people from the CALD community coming in to have those documents certified or witnessed by a JP. Sometimes they come in with interpreters, sometimes without, and sometimes those interpreters are family and friends rather than professional interpreters, and that causes challenges as well.

JPs can often be put in a difficult situation where they cannot really be sure if that person understands the documents they are signing. This bill will put in additional safeguards for people who require an interpreter when making an ACD. It will ensure that interpreters are required to meet eligibility criteria to prevent the potential for coercion and undue influence occurring over that person who is making the ACD.

We are seeing, unfortunately, an increasing prevalence of elder abuse and, increasingly, financial abuse as well. To have that protection at the advance care directive level, which is often when people are also making powers of attorney, will help. I want to thank the health minister for making this important change, protecting people in the CALD community.

Interestingly, Professor Lacey's review found there were a number of powers given to the Office of the Public Advocate, particularly around section 45, subsections (5) to (9) of the act, which provided the Office of the Public Advocate declaratory powers that have actually never been used. What those powers intended were to provide a dispute resolution process, yet many people who were in that position were seeking to have those matters resolved by SACAT.

As a result of the recommendations from Professor Lacey, this bill will remove those unused powers and I know that having those powers referred to SACAT will be quite helpful. I know the importance of succession planning, as I said, having worked in the area for more than 20 years, and it is critically important that we do encourage our constituents to have these documents—advance care directives as well as enduring powers of attorney and wills—up to date.

ACDs are particularly critical documents in relation to personal care to be able to ensure that your care and your lifestyle needs are exactly what you want when you do lose capacity. Improving accessibility to ACDs and increasing awareness in the general public is something we ought to be doing, and it is something the government is doing.

The Department for Health and Wellbeing has undertaken a redesign project that is going to result in a new, improved ACD form, a do-it-yourself guide, and updates to the website, which will be helpful for those people who are trying to do those documents themselves. Of course, it is very useful to have a legal practitioner advise you on those documents because they can be complex. The department is going further by making improvements to promotional materials and I believe they will be launched after the passing of this amendment bill, if that is the parliament's wish, and updated regulations as well.

We do play a really important role as MPs in promoting these sorts of documents to our constituents. We typically target older constituents when we are going through that education phase, but I can tell you that young people really ought to have these documents in place. I always used to tell my clients that they are not a do-once and never look at them again. We used to say to pick an anniversary or a Christmas or something every year and just look at them and make sure they are up to date because your life situation does change but you should have them early and keep them updated through your lifetime.

We have a wonderful ability to access a range of government and non-government agencies in this place to give us in-depth knowledge on these areas of law and health care. In our electorates we have wonderful community legal centres that we often refer our constituents to if they require advice. In my electorate, I have the Northern Community Legal Service and Uniting Communities who do wonderful work supporting constituents who are not able to afford private solicitors to help guide them in this way. I am looking forward to engaging with both those community legal centres to make them aware of these new changes to ACDs, and help them encourage people coming into their offices to make sure their estate planning is up to date.

I thank the minister for progressing these important changes, and I commend the bill to the house.

The Hon. D.G. PISONI (Unley) (17:03): Thank you, sir, for the opportunity to speak on the Advance Care Directives (Review) Amendment Bill 2022, which was introduced by the government in October last year. The bill closely mirrors the bill introduced by the Marshall Liberal government in 2021, which passed the Legislative Council in November that year. The bill was introduced in response to a statutory review of the Advance Care Directives Act 2013 conducted by Professor Wendy Lacey in 2019. The Lacey review made 29 recommendations, 22 of which were supported in full or in principle by the Marshall Liberal government.

The bill includes amendments on the following: inclusion of references to digital copies of advance care directives documents; interactions with other acts and laws; giving advance care directives where English is not the first language; requirements in relation to the appointment of substitute decision-makers and their empowerment; resolution of disputes by the Public Advocate; and referral of certain matters to the South Australian Civil and Administrative Tribunal (SACAT).

It is one of those tasks that I have addressed now twice in my life, the first time when Michelle and I were married. It was almost like an exchange of parents. The parents would be there if both of us were unable to make those decisions and we would be there for the parents. Now, 34 years later, we are seeing a reversal, where our children are now in that role and we are obviously still in that role for our children.

Occasionally, as a member of parliament you are personally touched by decisions that people have to make, where this type of thing may not have been in place. Of course, the family feels isolated. They feel as though the decision on behalf of their parents or their adult children has not been there for them, and what actions may come from other people making those decisions may not be the wishes of those who need a decision on the situation that they are in.

It is heart wrenching. This is why it is so important that wills are regularly updated, and this should be reviewed and updated every time you do that. I know that it can take, sometimes, years to review a will, going from making that decision to catching up with the lawyer, having that appointment, talking to the family members who are involved, and of course an advance care directive should always be addressed and set up at the same time. Really, the two of them should move together.

This bill, I believe, will make it easier and clearer for people to do that, and those who act on those directives as well. The bill is an example, I think, of where the parliament has responded to a series of recommendations from a very thorough review and moved forward quite quickly. The review finished in 2019. The bill was drafted and had passed one of the houses of parliament before the cessation in the lead-up to an election.

I am pleased that we are seeing predominantly the same bill. There are a couple of changes here, obviously, that the member for Frome spoke about earlier, and the debate of some amendments may very well appear in the committee stage, but it is one of those rare occasions, I think, where something has moved quite quickly from when the recommendations were made from a review. I commend the bill to the house and look forward to more discussion in the committee process.

Debate adjourned on motion of Mr Odenwalder.

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