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House of Assembly - Fifty-Second Parliament, Second Session (52-2)
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ADVANCE CARE DIRECTIVES BILL

Second Reading

Adjourned debate on second reading.

(Continued from 14 November 2012.)

The Hon. M.J. ATKINSON (Croydon) (15:40): I was talking yesterday about a person who is a representative for someone unable to express themselves. That representative should, if at all possible, be someone the person has chosen himself in advance of his current illness, and in whom he will have confided his views about life and how he would want to be treated or not treated.

Of course, sharing someone's life, or parts of it, will allow you to extrapolate what he would think about other situations. The point being that, when one drafts and signs an advance directive, it is almost certain that one will not be in a position to know the exact circumstances in which it will be used. We are rarely given to know the circumstances of our own demise, which is both a blessing and a curse, since who would want such a burden? Yet, at the same time, it prevents us from specifying in advance the manner in which we would wish to be treated, or which treatment we would want to avoid.

On the question of death and dying, I have done the practical twice: first with my father, and then second with my mother. What I observed is that when they were fit and healthy, they would say that they did not want their life to be prolonged, and they did not want intrusive and burdensome treatment. But, when they found themselves in that situation—my father through pancreatic cancer, and my mother through a stroke—there was a change in their attitude, and they sought to stay with us by all possible means.

There is also the problem that it is almost impossible these days to predict the rapid advances is medical technology, especially at the genetic level, which render possible the opportunities for personalised medicine and pain control beyond anything we might have contemplated yesterday or today, and which experts, let alone laymen, would find difficult to predict with accuracy even a few years ahead of time.

This means that making a written specification in an advance directive in a highly directive form as to which treatments you would want or not want is fraught, because what is today burdensome may be trivial tomorrow, and what may be incurable today may within a year or two become easily manageable and merely a chronic illness.

The report of the review committee on which the bill is based therefore suggests that advance directives are drafted to give the substituted decision-maker wide discretion based on the principle that he is acting to make the decision that the person himself would have made, had he been in the present situation but able to make the decision himself, given the same information. For the benefit of the member for Reynell, I am using the masculine pronoun to include the female—

Ms Thompson: Totally inappropriate and old-fashioned.

The Hon. M.J. ATKINSON: —as the member for Heysen (the Leader of the Opposition) explicitly does.

Ms Thompson: Also totally inappropriate.

The Hon. M.J. ATKINSON: Yes, thank you for that. This is not a 'best interests' test nor a 'reasonable person' test, since the unconscious patient on the bed, for the sake of this example, may not be as reasonable as any of us. I make the charitable assumption that we are all reasonable people, again just for the sake of the example, and I remind honourable members that it is not yet compulsory for all citizens to be reasonable by the standards of the full bench of the High Court.

We all have our odd and unreasonable beliefs, our superstitions, our foibles and our own world view, to say nothing of deeply-held religious beliefs of all persuasions that often take on a deeper meaning at times of crisis. Who is to say what is right or wrong, reasonable or unreasonable, in these circumstances when it comes to the right to consent to medical treatment and the right to withhold or withdraw medical treatment? Only the patient, or in the circumstances that they lack capacity, his designated substitute decision-maker.

As the bill makes clear, patient autonomy is the first and paramount purpose of the law in this context. If the state, with all its legal might and power, resources and bureaucracy, does not dignify the life of each citizen by validating and enforcing their requirements for what can and cannot be done to their own body, then we have failed as a state.

The mechanism of the law must operate to allow each of us that final measure of control over our own lives when it comes to medical treatment, even if some in the public do not agree with the choice that the person is making. An obvious example might be the refusal of a blood transfusion by an adult on religious grounds.

The power of medical attorney and the enduring power of guardianship have both operated for many years under the existing legislation with few problems but little use, and they confer similar powers on the equivalent substituted decision-makers appointed under those acts. The medical profession and the public have come to accept the concepts and to develop a system to operate in this new paradigm.

I think we need to expand the coverage of the concept to more people, and the review committee has made relevant recommendations to achieve that, but I expect, as the baby boomer generation ages, their expectations of control of their lives at the end of their life will motivate them to seek out and put in place this kind of legal instrument in a way that their parents and grandparents did not. The consolidation of all three instruments into one will assist that by simplifying and reducing the cost.

Although generally, therefore, I fully support the intentions of the bill as a means of updating and making more readily accessible the law of advance directives to as many people as possible, there are some matters I think warrant further consideration. It is clear that the whole reason for being of the legislative scheme, from its first introduction almost three decades ago as the living will, was to invest in each of us legal and moral autonomy as individuals and as patients. This should be so even when we lack the mental and therefore legal capacity to make some or all of the relevant medical and lifestyle decisions for ourselves.

If these fundamental rights are not upheld for the weakest and most vulnerable in our society, the state has failed. Although such a scheme under which a person may appoint another to make decisions on his behalf when he lacks mental capacity has potential for abuse, so too does the scheme for preventing the abuse have the potential for negating the principal purpose of the scheme. We must be certain that the policing mechanism is proportionate to the risk and that it does not overwhelm the autonomy of those who should benefit from it when they are unable to speak for themselves.

The bill in division 7 provides sweeping powers for the Public Advocate and the Guardianship Board, as well as the courts, to set aside decisions of the substitute decision maker appointed by the patient and even to stand aside the substitute decision maker himself. These actions negate the purpose of the act and the role of the people who complete the form in good faith, thinking they have appointed a decision maker of their own choosing, only to find that once they lack mental capacity and are unable to act for themselves, others may contest the decisions made on their behalf and appeal to the board and then the courts at a time when all concerned are vulnerable.

So, although it is certainly so that some form of oversight is required in this legislation, it is a fundamental principle that the patient must be allowed to speak for himself or through his appointed representative. No-one can claim to know the mind of the person who made out the advance directive at some later time when he has lost capacity, but surely the person he trusted with such a power is the one most likely to be able to give such a view and, in any event, his view must be preferred to that of the Guardianship Board or some other authority, such as the courts.

These independent bodies are just that, independent, and they are in a position to determine facts, not values. Values that have been acquired over a lifetime, perhaps, and which may, or may not, appear totally comprehensible to any, or all of us, or to the infamous 'reasonable person' in the context of a court. After all, is it reasonable for a person of a particular religious belief to refuse a blood transfusion? Many of us would say no, but this is a matter of faith and belief, not a matter of science and reason.

If the patient were conscious then he would have an absolute right to refuse treatment without having to give any reason, rational or otherwise, and he would not be accountable for that decision to the Guardianship Board. He should not be denied that same freedom simply because he lapses into a mental or physical state where he lacks capacity. Indeed, that is the whole purpose of the bill. So I would commend to the minister some further consideration of division 7 so that the powers of the board are circumscribed to the extent that primacy is again restored to the patient and so it is clear in the text of the bill that this is so.

In all other respects, I think that the law that this house adopted almost 20 years ago has stood the test of time well and represents a significant reform of the law that has once again placed South Australia at the forefront of this area without the need to resort to, what I think, are extreme measures, such as physician assisted suicide.

I have happy memories of the Select Committee on the Law and Practice Relating to Death and Dying, on which I served with the member for Peake, Vic Heron, and the member for Elizabeth, the Hon. Martyn Evans, and also the member for Coles, Jennifer Cashmore, who was very much the driving force of the committee and, I must say, the member for Coles was one of the most accomplished parliamentarians with whom I have served.

The legislative package builds on the law we have now and further empowers people to take charge of their own destiny in an increasingly complicated world of high-tech medicine. It is their right and our obligation as legislators to empower citizens in this way. There should be a right to give prior informed consent to treatment, to refuse treatment, for health professionals to be protected when administering treatment that relieves pain and distress, and the right to appoint others to act on these rights, on one's behalf, when one is unable to do so oneself. I commend the bill to the house.

The Hon. J.D. HILL (Kaurna—Minister for Health and Ageing, Minister for Mental Health and Substance Abuse, Minister for the Arts) (15:56): I thank all those who have contributed to this debate. I listened carefully to everything that was said and I think most members support the general thrust of what is proposed. A number of questions have been raised and I hope that during my reply I will be able to answer the majority of those concerns. The nature of my response is more like a second reading explanation, in that it has been crafted to provide information to the house.

I will take this opportunity to clarify some issues that have been raised as a result of correspondence received by the opposition from Dr Pope and Ms Seal. I also point out that neither Dr Pope nor Ms Seal have written to me or the department about this bill, to the best of our knowledge. We have not been able to find any correspondence. Their correspondence raises a number of issues which primarily relate to: when a refusal of health care in an advance care directive should apply; what happens in emergency situations or when the ACD is not clear; how health practitioners and others can be assured that the ACD is valid and can be relied upon; and the conscientious objection provisions.

Firstly, it has been suggested that the binding nature of an advance care directive should only apply when someone is in the terminal phase of a terminal illness. I point out to the house that under the bill only refusals of health care that are relevant to the current situation are binding. All other provisions for health care, residential accommodation and personal matters must be taken into account when decisions are made for them by others. Currently, under common law, a competent adult can refuse medical treatment or health care either directly or through a medical agent or enduring guardian who must follow any instruction written by the person if it is specific and applies to the current circumstances. Refusals of health care or medical treatment in these instruments do not necessarily only apply when a person is in the terminal phase of a terminal illness or in a persistent vegetative state but can apply to other situations or circumstances. That is the common law.

With a few exceptions, such as mental health treatment orders or emergency situations, medical treatment, including life-sustaining measures, must not be provided without the consent of the person or, if they are incapable of making decisions, their legal representative, which currently includes a medical agent, enduring guardian, guardian, relative, or in some case the Guardianship Board. I also remind members that it is the Consent to Medical Treatment and Palliative Care Act 1995 that regulates consent to medical treatment and not this bill. The Advance Care Directives Bill simply enables competent adults to write down their directions, preferences and wishes for their future health care, residential accommodation and personal affairs. So, it is an enabling mechanism for the powers that exist elsewhere.

The principle that a competent adult is not obliged to consent to medical treatment has been established in all major common law jurisdictions, including in the New South Wales and Western Australian Supreme Courts—Hunter and New England Area Health Service v A [2009] 761, and Brightwater Care Group (Inc.) v Rossiter [2009] 229. Similarly, medical practitioners or service providers are under no obligation to provide such treatment without consent.

These decisions are reflective of the common law principle that competent adults have the right to autonomy and self-determination. In balancing the rights of the competent adult to control his or her own body and the interests of the state in protecting and preserving the lives and health of its citizens, the common law precedent is that, where such a conflict arises, the right of the individual must prevail. The principles relating to the issues are as follows:

except in the case of an emergency where it is not practicable to obtain consent, it is at common law a battery to administer medical treatment without the person's consent;

consent may be expressed or implied, and whether a person consents to medical treatment is a question of fact based on the circumstances in each case;

a person may include in an advance care directive a statement that the person does not wish to receive specific medical treatment. If that advance care directive was made by a competent adult, is clear and unambiguous, and extends to the situation at hand, it must be respected. It would be a battery to administer medical treatment to the person of a kind prohibited by the advance care directive; and

for a provision of an advance care directive to be valid, it is not necessary that the person giving it should have been informed of the consequences of deciding in advance to refuse specified kinds of medical treatment, nor does it matter that the person's decision is based on religious, social or moral grounds rather than upon, for example, some balancing of risk and benefit. Indeed, it does not matter if the decision seems to be unsupported by any discernible reason, as long as it was made voluntarily and in the absence of any mitigating factor, such as misrepresentation by a capable adult (Hunter and New England Area Health Service v. A [2009] 761, which I referred to before.)

In addition, the advance directives review recommended that the right to respect a competent adult's right to determine what happens to their own body be enshrined in South Australian law. The bill has been developed based on this recommendation. Many South Australians, during the advance directives review and consultation on the national framework, indicated that they wanted to be able to write instructions which would apply in circumstances not limited to the last few days of life.

In their correspondence, Dr Pope and Ms Seal suggest the bill should only apply to refusals of life-sustaining measures when the person is in the terminal phase of a condition or illness and that ageing should be included in the definition of a terminal condition. We need to ask the question: does this mean that we are all terminal, or does the terminal phase kick in at any particular age—70, 80 or 90?

Frankly, to limit a person's ability to refuse health care only if they are in the terminal phase of a terminal illness or a persistent vegetative state is contrary to the principles underpinning the bill, inconsistent with common law, and contrary to the advance directives review and National Framework for Advance Care Directives.

The other main issue that has been raised with the bill is what happens in an emergency, or if an advance care directive is unclear. If a patient is incapable of consenting and a medical practitioner is of the opinion that the person needs treatment to meet an imminent risk to life or health, treatment can be provided if to the best of their knowledge the person has not refused to consent to treatment and, only if reasonably practicable to do so, the medical practitioner must make reasonable inquiries to determine if a person has an advance care directive which relates to the current situation or condition.

If the patient has given an advance care directive appointing a substitute decision-maker and the medical practitioner knows this, if the substitute decision-maker is available to make a decision that person's consent should be sought. This is currently the case under the Consent to Medical Treatment and Palliative Care Act 1995, where someone has a medical agent, guardian or enduring guardian.

If a medical practitioner is presented with an ambiguous advance care directive, and they are unsure whether it applies and it is an emergency situation, under section 13 of the Consent to Medical Treatment and Palliative Care Act 1995 a medical practitioner can provide treatment. The bill does not change this.

It has been suggested that complying with a binding refusal under some circumstances may be facilitating suicide or voluntary euthanasia. I reiterate that the bill provides that the following provisions contained in the advance care directive would be void and of no effect: unlawful instructions or instructions which would require an unlawful act to be performed, such as voluntary euthanasia or aiding or assisting a suicide; refusals of mandatory treatment, such as compulsory mental health treatment under the Mental Health Act of 2009; and actions which would result in a breach of professional code or standard.

If someone presented to an emergency department and it was suspected that the person was attempting to commit suicide, even if the person had an advance care directive which refused life-sustaining treatment, the provisions of the Mental Health Act 2009 would likely apply and the person could be treated without consent. Under the bill health practitioners incur no criminal or civil liability for acts or omissions done or made in good faith without negligence and in accordance with an advance care directive.

Another issue relates to how health practitioners and others can be assured that the advance care directive is valid and can be relied upon. The bill states that, to complete the advance care directive, an adult must be competent, which is defined in the bill to mean that the person must understand what an advance care directive is and the consequence of completing one, that is section 11(1). Under the bill to be valid a suitable witness must certify on the form that he or she:

gave the person any information required by the regulations. It is anticipated that such information would include the consequences of completing an advance care directive, information on where to keep their advance care directive, who to give copies to, etc.;

explain to the person the legal effects of completing an advance care directive and which, in their opinion, the person appeared to understand; and

believes that the person was not being pressured, coerced or threatened to complete the advance care directive and was completing it of their own free will.

The witnessing provisions have been designed to be an added protection for those completing an advance care directive, and also those having to apply them at a later stage to enable them to have confidence that a person was competent at the time they completed the advance care directive and was doing so free from coercion. Witnesses will be provided with guidance to assist them in their role and will be advised that they should refuse to witness an advance care directive if they are not satisfied with the above.

Under common law, a person's refusal of medical treatment/health care does not have to be medically or legally informed to be valid, and this is the case for instructions contained in existing instruments. The bill reflects this common law principle. The advance care directive form will be designed to allow people to write down their values and goals of care, what is important to them when decisions are being made for them by others, what levels of functioning would be intolerable and where and how they wish to be cared for when they are unable to care for themselves.

The guidelines, together with the form, will highlight the serious consequence of refusing specific medical treatments without being clear about the circumstances in which they apply, as well as advising them to seek medical advice to ensure that their instructions will achieve the desired results. There is some suggestion that the bill lacks provisions to change an advance care directive which may no longer be relevant (for example, if a person's circumstances have changed since they made their advance care directive), and that the only way to update an advance care directive is to complete a new form which may be difficult for someone who is unwell.

It would be inappropriate, as has been suggested, to allow a person to verbally update and alter an ACD, and I would be surprised if medical practitioners relied on the word of others that a person had changed their mind about what they do or do not want to happen to them. If a person is physically unable to complete a new advance care directive, clause 11 of the bill requires a person to 'cause' the form to be completed. The term 'by causing' is included to allow those adults who do not have the physical capacity but who are competent to fill out the form.

If anyone has concerns regarding an advance care directive or action proposed to be taken under an advance care directive, the Public Advocate may give declarations regarding:

the nature and scope of a person's powers under the advance care directive;

whether or not a particular act or omission is within its scope; and

whether the person who completed the advance care directive has impaired decision-making capacity in respect of the particular decision.

A declaration by the Public Advocate is not legally binding. The purpose of a declaration is to guide or give greater certainty to the parties. If a person is not satisfied with a Public Advocate's advice or declaration and requires greater certainty about a matter, they can apply to the Guardianship Board for a review. In reviewing the matter, clause 47(3) enables the Guardianship Board to:

confirm, cancel or revoke a decision or declaration of the Public Advocate;

make any declarations the board thinks necessary or desirable in the circumstances; and

give any advice the board considers necessary.

If a person's circumstances have changed such that their appointed substitute decision-maker is no longer appropriate, the board can consider the matter and revoke the appointment if it is satisfied that this is the case. However, in making a determination, the board must apply the principles in the bill, including that the wishes of the person who gave the advance care directive are paramount. If a guardian is subsequently appointed, the guardian must give effect to relevant wishes and provisions contained in the advance care directive.

The bill provides that a health practitioner may refuse to comply with a provision of an advance care directive on conscientious grounds. Having refused to comply with a provision, it is then a requirement under the bill that the health practitioner refer the person or their substitute decision-maker to another health practitioner. Such a provision may be about medical treatment, but it could also be about other types of health care, such as physiotherapy, acupuncture or podiatry. This provision is not only related to medical practitioners, the requirement to refer the patient to another health practitioner was recommended by the Victorian Law Reform Commission in the 2012 Guardianship Report, where it was stated that:

A health professional should be required to refer the patient or enduring personal guardian to another health professional if their personal views or beliefs prevent them from complying with lawful directions in a valid instructional health care directive.

That was point 143.

The Good Medical Practice: A Code of Conduct for Doctors in Australia also provides for conscientious objection. Although nothing in the code expressly states that a health practitioner must refer a patient to another health practitioner, the phrase 'not using your objection to impede access to treatments that are legal' could be read as obliging a health practitioner to refer a patient or their substitute decision-maker on, especially in a situation where a person may have difficulty accessing an alternative practitioner because they do not have the capacity to do so for themselves. If this provision was removed, as has been suggested, where would that leave the incapacitated patient? Having health care provided which is against their instructions? Or being left with no-one to care for them?

Some members also received correspondence from Dr Brooksbank, chair of the Palliative Care Council, who sought clarification about the effect of the amendment to the Coroners Act. In her correspondence, Dr Brooksbank was concerned that the scope of reportable deaths appeared to have changed as a result of the new bill. This is not the case. Currently, under section 3(g) of the Coroners Act 2003, if a person dies within 24 hours of receiving medical treatment that has been provided with consent of a relative, guardian or Guardianship Board, the death is a reportable death. There are also other categories of reportable deaths, including: unexpected, unnatural, unknown cause or if a person dies within 24 hours of surgery.

Under the bill, sections 58 to 60 have been removed from the Guardianship and Administration Act 1993 and replaced with new provisions in the Consent to Medical Treatment and Palliative Care Act 1995, which allows a person responsible to consent to health care on behalf of a person with impaired decision-making capacity. The Coroners Act is being amended to merely recognise these new provisions. That is the only change. The effect and intent remains the same: if a third party, albeit a relative, person responsible or the board, consents to health care for a person whose capacity to consent is impaired and they die within 24 hours of receiving treatment the death is reportable to the Coroner.

The provisions in the Coroners Act which require a death to be reported to the Coroner relate to a 'person receiving medical treatment' not to those deaths where treatment is withdrawn or not provided, for example, in cases where treatment limitation/abatement occurs for palliative care patients or those who are dying. I would like to thank Dr Brooksbank for the opportunity to clarify the intent of this minor amendment. It is my understanding that officers in my department met with Dr Brooksbank and she indicated at that meeting that she is comfortable with this explanation.

The Advance Care Directives Bill is only the first part of the reform process. As I stated in my second reading explanation, the implementation of the new act will be critical to its effectiveness and application. This bill only adopts the Advance Directives Review Stage 1 Report: Recommendations for changes to law and policy. The stage 2 report makes 31 recommendations for implementation and communication strategies to support the act's implementation. It is my view that many of the issues raised in this house can be resolved in the implementation of the act, including the development of the form and guidelines, public awareness and professional education. Policies and protocols in the public health system will also need to be developed to support the act's implementation.

In summing up, the bill adopts the majority of the Advance Directives Review stage 1 recommendations and aligns with the National Framework for Advance Care Directives and is consistent with common law. This bill is not a radical policy shift. The bill was informed by extensive consultation, including with consumers, health practitioners, doctors, intensive care and emergency medicine specialists, as well as the aged and community care sector. I would like to point out that both the Australian Medical Association (SA Branch) and the Australian Nursing and Midwifery Federation (SA Branch) made submissions to the review and also to the National Framework for Advance Care Directives.

This bill is not just about medical treatment decisions at the end of life but allows competent adults to write down their preferences, directions, wishes and values for their future health care, residential accommodation and personal matters, and/or appoint one or more trusted substitute decision-maker to make such decisions on their behalf. The bill extends the same common-law rights to competent adults to be able to direct what happens to them in the future or to have someone they choose to stand in their shoes when they are unable to make their choices and decisions known personally.

As is currently the case, any instructions or directions contained in an advance care directive must be relevant to the current circumstance or condition before they take effect. The emergency provisions in the consent act have not changed. Where there is imminent risk to life or health of the patient and the patient's advance care directive is ambiguous, unclear or not known, treatment can be provided without the patient's consent. Under the bill, only refusals of health care can be binding, and all other preferences or wishes must be taken into account if it is reasonably practicable to do so in the circumstances. Health care is defined more broadly than just medical treatment.

I thank all members for their contributions to the debate. I apologise for the length of that statement, but I hope that it addresses all the issues that members have raised. I look forward to answering any specific questions during the committee stage.

Bill read a second time.

Committee Stage

In committee.

Clauses 1 to 4 passed.

Clause 5.

Mr PEDERICK: I move:

Page 7, lines 22 to 27 [clause 5(2)]—Delete subclause (2)

The amendment I am moving is that subclause (2) be deleted. This references particular forms of health care in advance care directives. Subclause (2) provides:

Subject to any provision of the advance care directive to the contrary, a reference in an advance care directive to a particular illness, injury or condition (however described) will be taken to include a reference to an illness, injury or condition arising out of, or out of the treatment of, the illness, injury or condition.

The advice that has been conveyed to me in regard to this clause is that the provision of any subsequent health issues arising from the condition, to which the advance care directive refusal relates cannot be treated, be deleted because it raises issues about treatable conditions that could be dealt with instead of allowing the advance care directives to stand. I am interested in the minister's response to this amendment.

The Hon. J.D. HILL: I thank the member for this amendment. The advice to me is that we are reasonably relaxed about the amendment, but I would just like to have a little more time to think about it. I will not accept it today but give you an indication that it is highly likely that they will accept it in the other place when it is considered in the second round. We think that what you are proposing makes sense, but I just need to check it a bit further.

Mr PEDERICK: I appreciate that, minister, and I note that these were only filed this afternoon, so I appreciate you looking at it later on.

Amendment negatived; clause passed.

Clauses 6 to 10 passed.

Clause 11.

Mr PEDERICK: I move:

Page 11, after line 32—Insert:

(6) For the purposes of this Act, an express provision of an advance care directive comprising a refusal of life sustaining measures other than during the terminal phase of a terminal illness will, in the absence of proof to the contrary, be taken to be valid if the person who gave the advance care directive—

(a) sought advice from a medical practitioner as to the consequences of the refusal of such treatment; and

(b) includes evidence of that fact in the advance care directive.

I am moving this amendment so that people are fully informed when they are doing these advance care directives, and, as I indicated in my second reading speech, I think the intent of the bill is fine, but I think these amendments need to be looked at to make sure that we get the right result and not the wrong result where there could be people who are not in a terminal condition and an advance care directive is being invoked.

The Hon. J.D. HILL: I thank the member. I indicate that the government will not support this provision. This would in fact restrict the rights that we have now as citizens to make decisions about advance directions about what we want under certain circumstances. We do not have to seek medical advice in relation to that.

The question as to whether somebody is in a terminal stage of a terminal illness, of course, is a matter of fact which only a clinician could give comment to. The family member or another person who is acting on behalf of the patient cannot say that person is now in a state of a terminal illness; that would be a medical fact. So, at that point, when the advance care directive might be applied, that is when the medical advice would come into play, and that advice would be to the person who is acting on behalf of the patient, as I understand it.

To, in advance, seek medical advice would be a relatively meaningless thing, because if I were to go to my doctor at the age of 25 or 30, who is to know what kind of medical advice could be given in anticipation of all the myriad of things that could happen over the next 60 or 70 years of my life. This would be a burdensome provision to put in the act. It would be in practice, I think, meaningless, but it would also very much restrict what are already the rights of citizens.

This is about individuals having the right to determine what happens to them in circumstances which they articulate. It is not about a paternalistic approach where a doctor can tell you whether or not you can do something. I know the member will say that is not what he is proposing; he is proposing that a doctor gives advice, but there is no way all of the possible circumstances that might face a person could be properly advised on in any practical or meaningful way.

Mr PEDERICK: So, minister, from what you said in your response speech earlier and your response just then, are you saying that someone could not have in their advance care directive, under advice, that if they were still in the prime of their life and perhaps they were involved in a car accident and were in a coma or something like that—surely they could allude to something like that in the advance care directive that that is where they would not want to see no treatment. What I am talking about is if it is an actual terminal event.

The Hon. J.D. HILL: The thing about an advance care directive is that you can put into it whatever you like. I have an advance care directive or equivalent under the existing legislation in place myself. My wife and I both did that some years ago. We completed our will, we did the enduring powers of attorney and the advance care directives.

I made my wife the principal decision-maker in respect of my care. I made it plain to her what I expected and then, if she predeceased me or she was incapable of acting, I made my sons jointly responsible for taking that exercise, and I have spoken to them. This is no longer practically the case, but I said, 'If I am in my 50s and I am unconscious, be a little bit cautious about the exercise of these powers, but if I am in my 80s and 90s and it is highly unlikely that, whatever was done, I would recover, then feel free to exercise them.' So, I made it plain to those who will act for me if I am not capable of acting for myself what I want to happen and that can be written down and made clear in the advance directives.

It is not a manifest where you write down, 'I do not want to be plugged into any machine, regardless of what happens.' You could theoretically write that, but it is about, if I am in these circumstances, this is what I want to happen. So, a person might say, 'Regardless of how old I am, if I am not going to recover from the injury or disease, I am not going to have mobility, I will not be able to feed myself, I will not be able to toilet myself, I do not want an intervention.' That may be what they say and then, at the point at which that power may be exercised, a clinician would be able to say, 'This is what is likely to happen if we do this; this is what is likely to happen if we do not,' and then the person who is exercising the authority on behalf of the patient will be able to make that judgement.

This is about rights. This is about the individual's rights to express what they want for themselves in all of the circumstances that might occur in the future. To the extent that they can, they could write pages and pages of particulars, I guess, about what they may want. Some might want to write simple things, others might write more complex things, but it is really up to the individual and it is to give existing powers to the individual that allow them to articulate what they want in a form that is readily available.

Mr PEDERICK: Thank you, minister, but, in relation to the same clause, I just seek some clarification. I used the example before of someone, let us say, has an advance care directive and all they have is simply, 'If I am in a coma, do not revive me.' If they are put into a coma through an industrial accident, a farm accident or a car crash and, at the time, there is some medical advice that the person is quite retrievable from that condition—and let us say the person is 35—but the advance care directive, with no other conditions, says, 'Do not revive me if I am ever in a coma,' how does that stand under the legislation?

The Hon. J.D. HILL: I am advised that the form will be written in such a way that it would not lead people to write things down of that nature. It would lead them to write down what their values are, what their wishes are and what kind of medical intervention they would want under certain circumstances. A bald statement like that, I suppose, is theoretically possible but, if somebody were to choose to say that, then that, I understand now, is their right—we are not changing that. The forms and guidelines will give advice in that direction, but somebody could do that now. If I fell over now and I had written down, 'I do not want to be attended to in any way at all,' then that is my right.

A Seventh-day Adventist person, for example, can refuse blood—whatever the circumstances. We know and we intervene if they are under 18. We regularly go to courts and intervene and say, 'This child will survive if they get a blood transfusion; they will die if they do not,' and the courts allow us to intervene. But if an adult, regardless of what persuasive information they are given, says, 'I do not want a blood transfusion,' they are told, 'You will die if you don't get one, you will survive if you do,' and they say no, then we do not intervene. That is their right; it is based on a religious code. Other people might have codes which are based on morality or whatever, but it is the right of the individual.

I understand the concerns the member is expressing and his not wanting people to die in circumstances where they might have survived; I do not think any of us would. But if a person chooses to say, 'I don't want blood,' for example, or, 'I don't want intubation,' or 'I don't want cancer drugs'—and I have heard of lots of people who have said, 'Don't give me any cancer treatment,' quite fit people who could have been looked after if they had got it, but they said, 'No, I do not want to go through that process'—that is their right, and they have a right to have that exercised if they are not in a state where they are competent to express it in the way that I have just expressed it.

The other point, of course, of which I am just reminded is if the medical practitioner felt that the advance care directive was wrong, or the person had not properly made up their mind, there is a dispute process. So, they can take it to the Public Advocate in the first instance, where you can make a declaration. Then, if they are not happy with that, they can go to the Guardianship Board, and if they are not happy with that, they can go to the Supreme Court. So, there are safety provisions in there.

For example, if this was in your family, and a relative had said something and you thought, 'Well, that's not what they've meant because they have talked to me about it,' or whatever, you could go through those processes to overturn it or even, I guess, a doctor could, too, and discuss it with the person who is responsible. You are appointing somebody to act on your behalf in most cases; you may not, of course, but in many cases you would.

These are the safeguards that are in place. The principle is as it is now. We are not really changing what people can do. They can do all these things now; this is just putting it in a different set of forms. That is really what it is about.

Amendment negatived; clause passed.

Clauses 12 to 18 passed.

Clause 19.

Mr PEDERICK: I move:

Page 15, lines 2 to 7 [clause 19(1)]—Delete subclause (1) and substitute:

(1) Subject to this section, a provision of an advance care directive comprising a refusal of life sustaining measures during the terminal phase of a terminal illness (whether express or implied) will, for the purposes of this Act, be taken to be a binding provision.

As I have said, all the information I have had in regard to this bill is information from health practitioners who have discussed it with a legal friend of mine who is involved in the Respecting Patient Choices program. This proposed new subclause seeks to amend clause 19(1) of the bill, which involves the binding and non-binding provisions and provides:

(1) Subject to this section, a provision of an advance care directive comprising a refusal of particular health care (whether express or implied) will, for the purposes of this Act, be taken to be a binding provision.

I understand that my amendment has the same meaning as that set out in the current consent act, so I would like to hear the minister's response to having this amendment inserted in the bill.

The Hon. J.D. HILL: Once again, the government does not accept this provision. It would be a reduction in the rights that people currently have, and it would mean that the advance care directives largely would be capable of being ignored by clinicians, with them inserting their own views in place of the person and often the family of the person. Certainly in the case of the terminally ill, obviously the doctors who have spoken to you are accepting of that, but there would be other cases, too.

Where somebody has dementia, for example, or a disease that has a long process before termination occurs but it is painful, it is debilitating, it is something that is very unpleasant to live with, such a person may say, 'I do not want intervention.' I gave the example of a cancer patient. It may well be that somebody with intervention could live for a year or six months or nine months but they say, 'No, I do not want intervention. I do not want to have chemotherapy or radiotherapy or whatever it is. I want to let the disease take its natural course.' They have an absolute right to do that.

What you are saying is that the doctor, if they were of a mind, if that person was unconscious or may have dementia or something like that, could intervene and impose something on that person that would extend life against the wishes of the person. To me that would be a rather despicable state of affairs. The patient and the family understood what that patient wants and, for a clinician then to intervene, contrary to the express wishes of the individual and the family, I think would be contrary to common morality, as well as good medical practice.

This is about individuals having a right to choose whether or not they want treatment. It may not be something that is life-threatening. They may say, 'Look, I don't want to ever have blood transfusions,' which is the example I gave before. They should have that right whether or not you or I agree with them. It is their right.

Mr PEDERICK: Minister, I certainly agree that, if people want to refuse of blood transfusion, that is their right, but I again go back to the case where a young person—let's say, a 35 year old—has an unfortunate accident. They have an advance care directive. I agree with you that people should have the right to choose, but they may never have foreshadowed when they filled out that advance care directive (whichever way, shape or form it was in) that they would be in a condition where they had said, 'If I'm ever on a life-support machine or whatever, don't revive me.'

I repeat along the lines of what I said before: there could be medical staff and doctors saying to the family, 'Look, we can revive your loved one.' I am just thinking that it's a bit of a predicament on the other side of the scale as well. I think the lines are blurred on this side of the argument as well, and I would appreciate your response.

The Hon. J.D. HILL: I really have to go back to what I am saying. I am advised now that these rights exist. People can do this now. If you have an enduring guardian or a medical adviser, if you have indicated that you do not want treatment, they can insist upon that. If the hypothetical set of circumstances the member described were to exist and the family thought that the person would not have considered that to be a situation in which they meant the power to be exercised, then they can seek a direction from the Public Advocate or the Guardianship Board, so there are provisions that allow people to test whether or not the power is being properly exercised.

This is an old kind of statement, I suppose, in law: that hard cases do not make good law. You choose a particular case and you say, 'This is a hypothetical example.' I am not sure we could actually point to any of these examples in practice and then you say, on the basis of that, the vast majority of people should be denied this right. These points are not made by you, but the kind of arguments being put by Seal and Pope are hypothetical debating points. However, the practical reality is that in the vast majority of cases—and I cannot think of any contrary examples—this works very well now. The problem is that it is a complex process. What we are trying to do is simplify it so that people can more easily use the processes in place. I think the members for Bragg and Croydon in their contributions both pointed out the fact that there has been relatively little take-up of the existing provisions, partly because, as the member for Bragg said, people do not like to think about death and dying, and partly because it is a bit complicated.

We want to have a proper debate, discussion, consultation and education process to encourage people to think it through. It is a bit like organ donation. If families are unaware of what a person wants when they die unexpectedly then they tend to be conservative and not grant organ donation, unless there is some sort of ideological commitment to it. However, if you tell your family and friends, 'Yes, if something happens to me they can take all my organs; I think it's the right thing to do,' then the family is likely, in those circumstances, to do what the person wishes.

With this kind of provision, the best protection is to talk it over with your family and friends so that they are absolutely certain about what circumstances should apply, and if there is any uncertainty at the time then appeal provisions are in place. By and large, this is about giving individuals a right to say what they want to happen to them in prescribed circumstances. If they say, 'If I am in a coma and I am unlikely to revive and, if I do, I will be in a vegetative state—in those circumstances I don't want to have anything done,' I think that is the more likely thing that would occur, not, 'If I black out in a dance somewhere or other, don't revive me.' These kind of extreme cases make for interesting debate, but they are not really about what is actually happening on the ground.

Mr PEDERICK: Thank you, minister. I am just trying to make sure, with the advice I have had from those in the medical profession and my lawyer friend, that there are no unintended circumstances. I appreciate that last example, but it means that people will absolutely have to be specific, I believe, in these cases.

Amendment negatived.

Mr PEDERICK: I move:

Page 15, after line 11—Insert:

(4) In this section—

terminal illness means an illness or condition that is likely to result in death and includes the process of ageing;

terminal phase of a terminal illness means the phase of the illness reached when there is no real prospect of recovery or remission of symptoms (on either a permanent or temporary basis).

This amendment is consequential to the previous amendment and inserts the meaning of 'terminal illness'. This reflects back on some of the comments I have made on some of the previous amendments, just to make certain that we do get the right decision made in regard to these advance care directives. In my own mind and the minds of the people I have consulted with, the decision should be made when the patient's condition is absolutely terminal.

The Hon. J.D. HILL: I indicate that this amendment is consequential to the amendment that was just negatived so, theoretically, it would be absurd if we passed it. Just for the sake of the record, the statement could be made that life is a terminal process, and to include the notion of the process of ageing does not really add a lot. When you are one year old you are ageing; you are a day older the next day. You do not age any faster when you are 90 years old. You only age one day at a time. I am not sure what it actually means, to be perfectly honest. Nonetheless, as it is consequential and it is part of the overall approach that the member is putting in his amendments, I indicate that the government does not support it.

Amendment negatived; clause passed.

Clauses 20 to 22 passed.

Clause 23.

Mr PEDERICK: I move:

Page 16, after line 9—Insert:

(1a) Despite a provision of other Act or law, a decision of a substitute decision-maker appointed under an advance care directive to refuse the provision of life sustaining measures to the person who gave the advance care directive during the terminal phase of a terminal illness will be taken to be binding on a health practitioner.

This obviously fits with my ongoing theme of whether the person is in the terminal phase of a terminal illness and that this provision be added so that the effect of any decisions made by the substitute decision-maker regarding life-sustaining measures are binding when a person is in the terminal phase of a terminal illness or condition. I would be interested in your response to the amendment.

The Hon. J.D. HILL: Once again, I indicate that the government does not support this amendment for the same reasons, principally, I have given before. This is really substituting a health practitioner for the individual and the individual's representative, that is, the substitute decision-maker. What this amendment means is that I can write down what I want to happen but, if a doctor chooses to, in a situation where it is not the terminal phase of a terminal illness my desires can be overridden.

Once again using the blood example, if I say I do not want to have blood given to me, and if I am no longer capable of making decisions for myself and it is not terminal, the doctor can decide what to do. That is contrary to good practice and morality, and it excludes the substitute decision-maker. My son and my wife, in my case, who know perfectly well what I want, would say to the clinicians, 'He doesn't want that,' and the clinician could say, 'Forget that. It's my responsibility. I will decide.' No, that is not the case: it is my choice. I have exercised my choice. I have thought about it. I have empowered family members to act on my behalf in circumstances. I trust them. They will do what is in my best interests.

We just went through this process in my family. There was no instrument, in fact, but my mother-in-law died a few months ago. The doctor said, 'There is a procedure which we can give you that might help, but it's not very likely.' My mother-in-law, who was starting to fade anyway, was told what the options were and she accepted it, but it was really up to her daughters to make the decision whether or not to proceed; they chose not to.

I guess you could say she was in the terminal stage, but it was not cancer; it was just the fact that she was dying. It was a natural process, and they did what was in her best interests and it worked well, but it could easily have been a doctor who was a bit more gung-ho, who wanted to experiment a bit, who could have said, 'Let's do this procedure. I think it's necessary and it will give her some extra life.'

That would have been incredibly intrusive. It would have been painful. It would have distressed everybody, but if we did not have the kinds of provisions this bill allows, the doctors could just do what they wanted. They might want to do it for research purposes. Who knows? Some doctors do these things. Under the bill, of course, it has just been pointed out to me that the substitute decision-maker stands in the place of the individual for whom the decisions are being made, and they have the same rights and responsibilities and the authority of that person.

Amendment negatived.

Mr PEDERICK: I move:

Page 16, line 19 [clause 23(4)]—Delete:

'Subject to an express direction to the contrary in the advance care directive, an' and substitute:

An

This amendment relates to clause 23(4) of the bill, the current version. What these health practitioners want is that the current version of the consent act be left intact. I seek simply to remove the words 'unless there is an express direction to the contrary' and just insert the word 'an'. Essentially, subclause (4) in clause 23 would read:

An advance care directive does not authorise the substitute decision-maker to refuse the following:

(a) the administration of drugs to relieve pain or distress;

(b) the natural provision of food and liquids by mouth.

I am just interested in your thoughts on that, minister.

The Hon. J.D. HILL: Again, it is restriction of an individual's choice. At the moment I can refuse to eat and drink if I am in a hospital. I do not have to accept the food and water, I do not have to accept the pain relief and I do not have to accept the medication, and I should be able to pass that power onto a person who is making decisions for me when I reach a stage when I can no longer make those decision for myself.

Once again using personal knowledge, some 16 years ago my sister died of cancer, and, in the week or so before she died, palliative care was taking control of her and she was given no food or water. She was given no nutrients at all—no water, nothing. She was just given morphine to maintain her, and that was what happened. It happens now.

I am advised that it would be an exceptional case where a person would include this provision—for example, a diabetes case. There was a recent case in a nursing home, I think, where a person who was suffering from diabetes won the right to refuse food and water. What this does is really make clear what the current laws are, and what you would be doing is narrowing the rights that individuals currently have.

Mr PEDERICK: Minister, you can correct me if I am not on the right track here, but my information is indicating to me that the current version of the consent act does not have the words 'unless there is an express direction to the contrary'.

The Hon. J.D. HILL: As I understand it, if I were to put into my advance care directive now under the current legislation that I did not want food and water and pain relief to be provided to me in certain circumstances, then that is what would occur. However, someone on my behalf cannot refuse it for me unless I have made particular provision along those lines, and that is what we are repeating in this legislation.

We are not changing the arrangements, as I understand it. The existing arrangements will be maintained. If I choose and I explicitly say, 'I do not want to have food, water, pain relief, drugs, any of these things if I am in this set of circumstances' then that is the rule, but if I do not say those things, then my substitute cannot decide for me that I do not want food, water or pain relief.

I think what you are wanting to occur is actually what occurs, that is, if I say that I do not want intervention that does not include pain relief. Pain relief would normally be given unless I said explicitly, 'I don't want pain relief,' and that would be a very rare event, I think.

Amendment negatived; clause passed.

Clauses 24 to 35 passed.

Clause 36.

Mr PEDERICK: I move:

Page 21, line 11 to page 22, line 5—Delete clause 36

Health practitioners who have contacted me with this information indicate that they are concerned about clause 36, namely, that pursuant to this clause of the bill healthcare refusals are binding on all health practitioners, even in emergency events rather than that responsibility resting with the medical practitioner or practitioners or those under their supervision in such circumstances. The advice I have had from these health practitioners is that practitioners who do not comply with the advance care directive could be charged with assault and battery and also cited for professional misconduct. That is why I have moved that this clause be deleted. I am interested in the minister's response.

The Hon. J.D. HILL: If you were to remove this provision there would be no guidance at all to the medical profession, so in a sense you may as well say to health practitioners, 'Well, here is the law, you do what you choose.' This is saying that, if you ignore and do not follow the advance care directive, there are consequences and you could be referred to the Medical Board, which would then decide whether or not any disciplinary action should be taken. That is perfectly reasonable.

As I said before, if a medical practitioner chooses to perform something on me when I am compos—not mentally disturbed and not in an emergency situation—and were to do something to me that was against my will, then it would be assault and battery. That is the nature of the law. You cannot perform intervention on somebody against their will. Under prescribed circumstances, that is, where a personal is mentally impaired, there is a process you can go through which allows that to happen. You can do things if you are acting in good faith in an emergency situation, where you are in fact encouraged to intervene—that is normal process.

But, you cannot have a patient who has said explicitly, 'I don't want you to do this to me,' and then they go ahead and do it to them. That would be abuse of power and there should be provisions in there to protect the public in that way and I would have thought most practitioners would welcome making explicit that they have to follow the advance care directives because they do not want to be in an ambiguous situation as to their rights and responsibilities.


[Sitting extended beyond 17:00 on motion of Hon. J.D. Hill]


Mr PEDERICK: I appreciate your response, minister, but is there any risk at all in this clause that health practitioners who do not comply with the advance care directive could possibly be charged with assault and battery and also cited for professional misconduct?

The Hon. J.D. Hill interjecting:

Mr PEDERICK: Under this clause, and I appreciate your earlier response and you have covered some of it anyway, I think, but is there any risk at all that health practitioners who, for whatever reason, do not comply with the advance care directive could be charged with assault and battery and also cited for professional misconduct?

The Hon. J.D. HILL: Only if, knowing the advance care directive, they insist upon a course of action. Only when there is a binding refusal of health care. If I say, 'I do not want that intervention', and they ignore that and give it to me, then only under those circumstances. If it is an emergency, if I am mentally impaired or if they have my power overturned by one of the various appeals processes, then no, but if they blatantly ignore my request, then yes, in the same way that it would happen now. If I turned up to my doctor and he decided to perform some operation on me against my will then clearly I have a right of protection, and it is exactly the same.

Amendment negatived; clause passed.

Clause 37.

Mr PEDERICK: I move:

Page 22, lines 6 to 18—Delete clause 37

This is with regard to the conscientious objection clause. My amendment seeks to delete the clause. The clause provides:

(1) Despite any other provision of this Act, a health practitioner may refuse to comply with a provision of an advance care directive (whether binding or non-binding) on conscientious grounds.

(2) However, if a health practitioner refuses to comply with a provision of an advance care directive under subsection (1), he or she must take reasonable steps to—

(a) provide the person who gave the advance care directive, or a substitute decision-maker appointed under the advance care directive, the name and contact information of another health practitioner practising in the relevant field who the health practitioner reasonably believes will not refuse to comply with the provision on conscientious grounds; and

(b) if the person or the substitute decision-maker so requires, provide a referral to that health practitioner.

The health practitioners who have given me this advice have indicated that in this section a health practitioner who has an objection to facilitating an advance care directive treatment refusal has to refer the case and patient onto someone who will comply with the advance care directive even if the consequence of doing so results in the needless and unintentional death of that patient. The people who have consulted with me on this are concerned that someone may be forced, if they do not believe they want to comply, to refer the patient to another doctor, and they will have to live with the consequence that doing so could (could, I repeat) result in the needless and unintentional death of that patient.

The Hon. J.D. HILL: I thank the member and I might ask him a question as the mover of the amendment. What would he imagine would happen to the patient if the doctor who had the conscientious objection refused to do what the patient wanted? Would that patient then have imposed upon them something they did not want or would they have no medical service at all?

Mr PEDERICK: Yes, minister, that would be a difficult decision. It would be a difficult decision if you are not doing what the patient wanted. I guess what these people are saying to me and what I believe they are saying (and, certainly, I believe in the sanctity of life) is that the doctor may believe that this is a situation that is not life threatening and the life could be saved, so the initial doctor says, 'I can't live with that, I can't live with complying,' but under the legislation, under this clause as it is worded now (and I appreciate the point you are making, minister), the doctor then has to get another doctor who will comply with this directive.

I guess it is a bit of a morality issue for some of these health practitioners and doctors and it might be those lineball decisions that someone says, 'I think they are going to make it,' and for whatever reason they do not want to comply but then they do not want to have the guilt of having to refer that person on. I am just making the point on behalf of these doctors.

The Hon. J.D. HILL: You made the point well but it leaves the patient in a perilous situation because they have a doctor who, for conscientious reasons, does not want to comply with their binding wishes. Let us go back to the blood example, because I think that is a common example. I can understand the conscientious nature of the situation for a doctor who says, 'This person is unconscious and if I give them blood they will survive, but they have told me they don't want to have blood because of their religious views. So, are my religious views or is my morality more important than the patient's?' I am then left with a choice, as the doctor, of overturning what the patient has told me and intervening or leaving the patient alone. If I leave the patient alone, I guess in a weird sense I have complied with what they want, anyway. What the law is saying is, if you do not want to deal with that patient's binding request, find somebody who is prepared to do it. I would have thought that was the easiest solution. What you are proposing leaves a hiatus, and I think that is the difficulty with it.

I have some advice that might assist a little bit, and we are prepared to have a think about this between this house and the other and maybe talk to you and you could talk to some of your colleagues about it. There is a draft provision which would include, 'despite any other provisions of this act a health practitioner may refuse to comply with a non-binding provision of an advance care directive on conscientious grounds'. So we would still expect a binding provision but a non-binding provision could be along the lines of, 'My intention would be that I do not want this to happen if certain things are happening,' but not as explicit as a binding provision. I am perhaps not expressing that very well.

We are happy to talk to you about it and float this idea and, if there is general consensus around it, not just within this place but amongst the people who are proponents of the measures in this bill and the ones who wrote the report for us, if they are supportive of it, I have no real serious objection to something along those lines. But I think the issue has to be dealt with. You cannot have a doctor who is not prepared to deal with what a patient wants and then just leave the patient. They have to have somebody who is going to look after them.

Mr PEDERICK: Thank you, minister. I appreciate your responses, and I want to say that the people who got in touch with me are keen that there are no unintended consequences of this bill if it becomes an act. For my own sake, I believe in the sanctity of life and I uphold what these people have brought to me and want to make sure that the right decisions are made so that we do not end up having issues where people, for whatever reason, die from lack of treatment in any of these circumstances when the bill becomes an act and we have unintended consequences. I certainly was very keen to convey the wishes of these people to you. We have done that, and it will be an interesting discussion between the houses and the debate in the upper house, I am sure.

Amendment negatived; clause passed.

The Hon. J.D. HILL: Rather than make a third reading speech, I will make a quick statement now. I thank the members of the committee for their contributions to this debate, and I thank the member for Hammond for raising some issues which have given us a chance to clarify and put on the record what the provisions are about, and I think it is helpful. There were a couple of matters I said I would consider between now and the other place. If we can try to build a consensus for this, I think it would be a good thing.

This matter has been under investigation, consultation, discussion now for almost as long as I have been health minister, which is getting on for seven years. I want to pay tribute to everybody who has helped get it thus far, particularly Martyn Evans and his committee. I think they did a sterling job of building a report which has broad support.

I would also particularly like to thank my departmental officers—Kathy Williams, who is a senior policy officer in SA Health; Rebecca Horgan, who is a principal policy officer; and Alicia Wrench-Doody, who is a policy officer—for their help over a long time now, and also Mark Herbst, parliamentary counsel, for his great skilful professional work on this.

Remaining clauses (38 to 62), schedule and title passed.

Bill reported without amendment.

Third Reading

The Hon. J.D. HILL (Kaurna—Minister for Health and Ageing, Minister for Mental Health and Substance Abuse, Minister for the Arts) (17:12): I move:

That this bill be now read a third time.

The Hon. S.W. KEY (Ashford) (17:13): I support the Advance Care Directives Bill and congratulate the Minister for Health, the Attorney-General and all those who have been involved in extensive consultation to prepare the bill. I know it is extensive because in 2009, I think, I remember having a discussion with Martyn Evans, who chaired the consultation in this state.

As members would know, I have been a long-time supporter of advance care directives and planning for end-of-life arrangements. I am pleased that South Australia is able to lead the way in an important area, being the first state to consider legislation which applies to the newly agreed national guidelines for advance care directives. I am drawing on the ABC Radio National program in June 2011 to highlight the reason we need the Advance Care Directives Bill and what I understand to be an extensive education and awareness program in the community and the medical profession following the passing of the bill.

Dr Bill Silvester is at the heart of the global efforts. He is the president of an international society on advance care directives and he is receiving federal funding to roll out an advance directive training program called 'Respecting patient choices'. Dr Silvester, who works at the Austin Hospital, states:

Patients' end-of-life wishes are not being respected for a number of reasons. Either because they are not known, and that's because no-one's talked to them about it. Secondly, because the wishes may be known but not respected because doctors struggle with this as human beings. They struggle to accept the reality that the treatment is not working. Some doctors take it as a personal failure that the treatment is not working and so they...push on regardless. And for some doctors, it's a very difficult discussion to have with a patient or family members and so they avoid it by allowing the treatment to continue. Even though they may know that this is not what the person would want.

To change that culture we need education. Ongoing constant unwavering education of the junior doctors and where possible with the senior doctors.

The British Medical Journal article that we published in 2010 showed that doing advance care planning improved end-of-life care, improved the respect for patients' wishes at the end of life, improved patient and family satisfaction with regard to hospital care, and reduce the likelihood of anxiety, depression and post-traumatic stress in the surviving relatives of patients who died. And this whole area is continuing to grow.

The push to improve end of life care is not just about getting patients to decide what they want. It's about calls for compulsory, standardised training for all health professionals, to recognise when someone is dying, what treatment to choose, and how to navigate complex law in this area.

Doctors and lawyers are confused about whether an advance care directive should be legally binding. And about the power of people known broadly as substitute decision makers. Those we appoint to make our medical decisions when we no longer can.

As we know, the bill will clarify the situation in South Australia and facilitate the process for people to make their end of life arrangements. What we need is for the community to be provided with information that is easy to understand, forms that will assist them to make their end of life arrangements clear to their friends, family and doctors so there will be no more confusion and patients' wishes and patients' rights will be respected.

I commend the bill and just say that, as a member of parliament with a very busy electorate office, what really concerns me are the numbers of people who come into my electorate office (and I am sure other members' electorate offices) who have no idea how to fill in the forms, what they are doing and where they should be going. They certainly have views about their advance care directives but find the whole process really confusing.

If nothing else, it is really important for us to make that process easy for people and also easy for people to change their mind if that is what they decide. I really would like to compliment the minister and the team of people who I know have been working on this and I hope that this bill has a speedy passage.

Bill read a third time and passed.

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