Legislative Council Fifty-Fourth Parliament, First Session (54-1) 54 1 Parliament of South Australia Legislative Council published Motions Motions Advance Care Directives Act Advance Care Directives Act The Hon. M.C. PARNELL Legislative Council The Hon. M.C. PARNELL (16:09): I move: That regulations under the Advance Care Directives Act 2013 concerning exemption, made on 11 July 2019 and laid on the table of this council on 23 July 2019, be disallowed. Ten years ago, 26-year-old British woman, Kerrie Wooltorton, was taken by ambulance to Norfolk and Norwich University Hospital after having consumed poison in a suicide attempt. She carried a letter on her which was dated three days earlier. It began: To whom this may concern. If I come into hospital regarding an overdose or any attempt of my life, I would like for NO life-saving treatment to be given. I would appreciate it if you could continue to give medicines to help relieve my discomfort, painkillers, oxygen, etc. I would hope these wishes would be carried out without loads of questioning. The letter continued for three further paragraphs to assure the reader that the author knew the consequences of her refusal, including the likelihood of renal failure should she survive. It also stated specifically that she did not want dialysis and insisted that she had called the ambulance only because she did not wish to die alone at home, not because she had wanted treatment. When questioned in hospital soon after her admission, Ms Wooltorton simply said, 'It's in the letter, it says what I want.' Clearly, this posed an awful dilemma for the treating medical team. They consulted widely and they sought legal advice. Ultimately, they took the view that Ms Wooltorton was competent to refuse treatment and, on that basis, they believed they were obliged to act in accordance with her wishes. She was not given life-saving treatment and she died in hospital two days later. Later that year, the Norfolk coroner endorsed the doctors' decision to not provide treatment. The coroner found that Ms Wooltorton had full knowledge of what she was doing and said that it would have been unlawful for the doctor overseeing her care to intervene. It is probably also important to note that the letter was not just a scrap of paper in her pocket, but was a document that was also signed by a solicitor as witness. It is what is commonly known as a living will or what we call an advance care directive. That was 10 years ago in England. The South Australian regulations that I have today moved be disallowed deal precisely with cases such as this. They are dreadful cases. They are heart-wrenching cases but they are governed by state law and, as a state parliament, we have an obligation to deal with it. In order to understand this motion, you need to understand the regime under the Advance Care Directives Act 2013. The act says that if, as a person of sound mind, you set out your wishes in writing in a properly executed advance care directive and if you subsequently develop impaired decision-making capacity in respect of a decision about your health care, then a health practitioner is legally required to comply with any binding provisions of that directive. They are also required to comply with any non-binding provisions as far as is reasonably practicable. The objective here is to avoid any outcome or intervention that the person who gave the advance care directive would wish to be avoided. Probably the best example of this is a 'do not resuscitate' instruction. If that is your clear wish, then that is what your health practitioner should do. This obligation is set out in section 36 of the act under the heading 'Health practitioners to give effect to advance care directives'. The act then sets out a range of exemptions and qualifications, including the right of conscientious objection on the part of a health practitioner. That brings us to the regulations under the act. We need to consider how this regulation would apply in situations similar to the sad case of Kerrie Wooltorton. Under the regulations, the government has added a new exemption. The government has added a new circumstance in which a health practitioner is exempt from having to comply with the wishes of a person with a valid advance care directive. Those circumstances are as follows: if the health practitioner believes on reasonable grounds that the person has attempted to commit suicide and if the health care in question is directly related to that attempt, then the person's advance care directive is effectively made null and void. That is paraphrasing the effect of the regulations. I believe it is these new exemptions that should be the subject of more thorough debate, and for that reason I have moved the disallowance. However, having so moved, I do not think for one moment that this is a black and white matter. It is complex, and there are contradictory and mutually exclusive outcomes at stake. As a society, suicide prevention should be our collective responsibility and every possible measure should be put in place to prevent people getting to that point in their life where they see no other way out. I know this issue is close to the heart of many people in this place, me included. Certainly, the Hon. John Dawkins has been persistent in his advocacy for suicide prevention over many years, and I acknowledge his work in that regard, including securing more government funding and priority for suicide prevention programs. However, the sad reality is that in Australia around 3,000 people take their own life each year. The reasons are many and they are varied, but behind each statistic is a person, a family and a community that is impacted. Also amongst those impacted are the health practitioners who face the dilemma confronted by Kerrie Wooltorton's doctors and nurses: do they try to save her life or do they accept her clearly articulated wishes that she does not want life-saving treatment and that they should let her die? Whilst Kerrie Wooltorton was a young person, it is probably the case here in South Australia that the vast bulk of advance care directives are made by older people, and it is also generally acknowledged that this demographic has above average suicide rates, with men over 85 representing the highest percentage by age profile. One likely effect of the South Australian regulations could be to undermine public confidence in the whole advance care directive regime, especially for older and more vulnerable people. The whole rationale of the advance care directive system is to recognise our fundamental right to autonomy in medical decision-making. The core principle that underpins the act is to entrust people with a strong sense of autonomy and a right to make their own medical decisions, and not to have them made by others, no matter how well-intentioned. Of course, in cases such as this there may well be family members who desperately want to save their loved one and who do not accept that their decision to be allowed to die be honoured. They want their loved one saved, even though that is not what the dying person wants for themselves. According to UK media reports of Kerrie Wooltorton's case, her parents were planning to sue the hospital for failing to intervene. They were also reported to have called for an urgent change in the law to remove the right of the terminally ill to decline treatment following suicide attempts. This disallowance motion allows parliament to have this debate. It is not an ideal process but, given that these regulations have now been gazetted and are operative, it is really the only way for us to deal with it. I certainly think this matter is bigger than just the government of the day resolving, through delegated legislation, to make such a fundamental change to the advance care directive regime. I think the parliament and others in this community should also be involved in this discussion. Under parliamentary rules I could have postponed giving notice of disallowance until the end of October but, realistically, this debate will take some time and the clock is ticking. That is why I gave notice on the same day the regulations were tabled in this chamber. At this point I would also like to acknowledge the assistance of two people who originally brought this to my attention and who have also agreed to advocate on behalf of the disallowance motion. These are Martyn Evans, a former minister for health, and also Margaret Brown, Adjunct Research Fellow in the School of Psychology, Social Work and Social Policy at the University of South Australia. Both Martyn and Margaret have been involved in the formulation of laws and policies around advance care directives for many years. Martyn Evans was the minister for health when the original concept of anticipatory directions, as they were called under the Consent to Medical Treatment and Palliative Care Act, were being developed. Both these people are happy to speak to members about this difficult matter. I would also like to reflect briefly on the process behind these regulations. What is surprising about the timing of these regulations is that they were made only a few weeks before the government releases the results of a review into the operation of the Advance Care Directives Act 2013. According to the government website, the purpose of the review was to make sure that the act is working well for South Australians. Public submissions were solicited through various channels, including the YourSAy government website, and they closed on 24 May. The government advised that the report of the review will be made publicly available in August. My understanding is that we will see this report tomorrow. The question that arises from this timing is why it was necessary to urgently introduce regulations just three weeks ahead of the release of the findings of the review. This may or may not be one of the recommendations of the review, and we will not know that until later, perhaps tomorrow. Nevertheless, I can see no logical administrative, governance or technical reason why these regulations had to be rushed through without debate so soon before the results of a review are announced. So the only reason that I can think of is that somewhere in South Australia today there is a real-life case that has spurred the minister to action. Presumably, it is a situation like Kerrie Wooltorton's and that this is happening or has happened in one of our hospitals or one of our aged-care facilities and that there is a conflict of views over whether or not a person who has tried to take their own life should be medically treated or provided with food and water against their clearly expressed wishes. This is pure speculation on my part but I can think of no other reason why regulations such as this would have been gazetted only three weeks before a comprehensive review report was to be released. It goes without saying that these cases are nearly always tragic. They are heartbreaking and they are challenging for everyone involved: the person at the centre of the dispute, medical professionals, families and, in our case, legislators. I do not want to add harm to any tragedy that may be unfolding in South Australia; however, our role as a parliament is to ensure that laws that are made for the benefit of South Australians actually do work well for all of us. There is an old saying that 'hard cases make for bad laws'. We have seen this many times over the years. Sometimes the genesis of these laws is a difficult report from the Coroner; sometimes it is the observations of a judge in a court trial. My long experience of the law tells me that when we try to fix genuinely wicked dilemmas on the back of individual cases, we often get unintended consequences, and that is my fear in this case. So, until we hear more from the minister about why these regulations were introduced, we can only speculate. In the meantime, the prudent course of action is to maintain the status quo and to buy the parliament some time to consider the issue more fully, and that is why I have moved for disallowance. The question of whether a person's advance care directive should prevail in circumstances such as attempted suicide will clearly attract divergent views, which is why I think it will be important to hear directly from various stakeholders. Fortunately, this parliament has in place a ready-made vehicle to explore this issue relatively quickly. The Joint Committee on End of Life Choices was established primarily to look at the question of voluntary euthanasia, but the terms of reference also clearly cover this situation. These regulations are precisely about the choices that some people make at the end of their life. As a member of that committee, my intention is to put this on the agenda for consideration. I am not proposing a formal referral, because that is unnecessary, but I think this is the right committee to look at this issue. Of course, the Legislative Review Committee might also be interested, but I think the end-of-life choices committee is the more logical choice. I know that former health minister Martyn Evans and Margaret Brown have made a written submission to that committee and I hope the committee will agree to hear from them in person. I also hope that the committee extends an invitation to the Minister for Health and Wellbeing or a senior health official to provide some background and context to these regulations. Because I want this issue to have a broader debate than we can offer here in this chamber today, I will shortly seek leave to conclude my remarks at a later date. I want to give the parliamentary committee a chance to look at this and to hear from stakeholders. I do not expect this motion to linger on the Notice Paper for too long because, in the event that parliament is prorogued over the summer break, the motion would disappear, so I expect it to come to a vote before Christmas. I note that the act itself was the subject of a conscience vote by both the Liberal and Labor parties, so I would expect that a motion to disallow regulations that create exemptions to the operation of that act would also be a conscience vote; however, that is a matter for the other parties. I seek leave to conclude my remarks at a later date. Leave granted; debate adjourned.