Advance Care Directives (Review) Amendment Bill
Thursday 9 February 2023
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.
