ADVANCE CARE DIRECTIVES BILL

Second Reading

Adjourned debate on second reading (resumed on motion).

Dr McFETRIDGE (Morphett) (15:34): I rise to speak on the Advance Care Directives Bill 2012, which was tabled by the Minister for Health in this place on 17 October 2012, and it is one that I can say I will be supporting. I do have some concerns, which I will be outlining in my speech, and I will be looking forward to the minister's response to not only my concerns but those of the medical profession whose representatives I have been speaking to.

The need to make sure that we all have some form of directive for our relatives, our friends, our representatives to undertake for our care and our welfare if we are in some way suffering any illness or accident and cannot make those decisions apparent and clear at the time is very important. Having been involved in interesting discussions, shall I say, with family members over wills, and having had constituents come to see me about contested wills and disputes about wills, I know how bad it is to see someone dying without their having an up-to-date will and how important it is to make sure that their relatives are clear not only about the intentions of what that person would like done with their worldly possessions after they die but also that their relatives, representatives, friends, and family, are clear about their wants and desires for their care and welfare whilst that person is still alive, and that is what this Advance Care Directives Bill is all about.

The bill enables competent adults to make decisions and give directions in relation to their future health care, accommodation arrangements and personal affairs and to appoint substitute decision-makers to make such decisions on their behalf, and that is what we have been looking for for a long time. We have had variations on the theme. We have had a number of different pieces of legislation that have attempted to cover this whole spectrum of issues that are to be covered by this Advance Care Directives Bill. In April 2007, the government launched the Advance Directives Review with the release of an issues paper, entitled 'Planning Ahead: your health, your money, your life', for public comment.

An independent Advance Directives Review Committee was established with the former health minister, the Hon. Martyn Evans, as chair. The 11 member review committee was supported by a panel of experts across a broad range of areas, and over 120 submissions were received on the issues paper from health, aged-care and community care professionals; lawyers; community organisations; consumers; Aboriginal communities; government agencies; and financial institutions. That process was begun back in 2007 and, here we are in 2012, five years later, we are seeing this legislation before us.

After 18 months of deliberation, the Advance Care Directives Review Committee reported to the Attorney-General in two stages, with 67 recommendations. In 2011, the Australian Health Ministers' Advisory Council endorsed a national framework for advance care directives. The framework provides a lexicon of terms (I am advised by the shadow Attorney-General that that is a term used for a very broad spectrum of views) to facilitate national harmonisation, a code of ethical practice and best practice guidelines on advanced care directives.

The bill before us consolidates a number of pieces of legislation, namely, the medical power of attorney and anticipatory direction, which come under the Consent to Medical Treatment and Palliative Care Act 1995, and enduring power of guardianship, which comes under the Guardianship and Administration Act 1993. These pieces of legislation require different forms to be completed and have different witnessing provisions. The proposed advance care directives legislation has a simplification, where it will be one form governed by one act, and it is important to note that financial powers of attorney and wills will not be affected by this piece of legislation.

The bill is founded on the principles of supported decision-making, making sure that people should be supported to make their own decisions as long as they can. The directives will apply to any period of impaired decision-making capacity, and that is going to be important in some of the issues I raise later. So it is any period of impaired capacity—not age, but any period of impaired capacity—whether temporary, fluctuating or permanent, as directed by the person in their advance care directive, in various periods of life, not, as I have just said, just at the end of life but in periods of unconsciousness or if there is any other degenerative condition.

Assessment of capacity will now be decision specific, not global, and made when the decision is required. While enduring powers of guardianship are currently as broad as the powers of a guardian at law, medical power of attorney or advance care directives are focused on medical issues. The new advance care directives are broad based, including residential, accommodation and other personal matters. The bill aims to make it easier for people to express their views and preferences and to have a confidence that they will be known and respected in the future.

The information that people will be able to include in the new advance care directives is significantly expanded. People can include, for example, values and goals in life and of care, what is important to them when decisions are being made for them by others, instructions relating to various periods of life, what levels of functioning would be intolerable and whether, and how, they wish to be cared for when they are unable to care for themselves. Even if it is how to look after their pets, it is important that the whole of their life is taken into consideration.

While there is no need to do so, the bill does not prevent people specifying health care they do not wish to receive, including refusals of life sustaining measures, such as CPR, artificial hydration, nutrition or ventilation (i.e. life support) and the circumstances under which refusals will apply. Instructions and express preferences, other than refusals of health care, must guide decision making, but are not binding on others.

The bill has been drafted to enable as much flexibility as possible for those completing an advance directive and allows for three options:

1. Written instructions, preferences and wishes and the appointment of one or more substitute decision-makers.

2. Only written instructions and preferences.

3. The appointment of one or more substitute decision-makers without written preferences.

Subject to any contrary provisions contained in an advance care directive, an appointed substitute decision-maker can make all the health care, accommodation and personal decisions the person would lawfully make if they had decision making capacity, and the decision has the same legal effect as if it were a decision of that person themselves.

The bill requires that substitute decision-makers must make decisions using the substituted judgement decision making standard to make the decision they believe the person would have made in the current circumstances if they had access to the same information. This standard contrasts with a 'reasonable man' or 'best interests' test. Both the witness to the form and the substitute decision-maker are subject to conflict of interest disqualifications.

A key reform is the establishment of appeal and review processes. Under the bill, advice and mediation services will be provided by the Public Advocate with the power to give non-binding declarations in relation to a few areas of dispute. (i.e. the nature and scope of the person's powers under the advance care directive). The Guardianship Board can review a matter dealt with by the Public Advocate, and also, upon application, give a binding direction or declaration in relation to a matter relating to an advance care directive, and can also refer a matter to the Public Advocate for mediation.

To be valid, the advance care directive must be completed using a form approved by the Minister for Health and Ageing and it must be witnessed. Rather than prescribing the form in legislation, a 'do it yourself' advance care directive kit will be developed, comprising the advance care directive form, accompanied by guidelines outlining in lay terms the rights and responsibilities of all parties involved in the completion and application of an advance care directive.

Currently South Australia is one of the only Australian jurisdictions in which advance care directives completed in other jurisdictions are not recognised. To enable the legal recognition of advance care directives, the bill sets out a process whereby the Governor can then declare by regulation a class of instruments completed in other jurisdictions as though completed under the advance care directives legislation here in South Australia. Provisions in an interstate advance care directive considered unlawful in South Australia will be deemed to be void and of no effect even if lawful interstate.

The bill amends the Consent to Medical Treatment and Palliative Care Act 1995 to clarify consent arrangements in the absence of an advance care directive for patients unable to consent, and introduces a dispute resolution process, including voluntary mediation. Currently the Guardianship Act specifies that where there is no legally appointed representative, such as a guardian, enduring guardian or medical agent, limited relatives can consent to health care on behalf of an adult with a mental incapacity.

Amendments to the consent act lay down the responsible person who can consent to health care on behalf of the patient with impaired decision-making capacity if there is no advance care directive. The person is to be identified by the following hierarchy, in order:

1. A guardian appointed by the Guardianship Board, provided that the guardian's powers do not exclude making healthcare decisions.

2. If there is no guardian appointed, a prescribed relative of the patient can consent within a hierarchy related to whether the person has a close and continuing relationship with the patient.

3. If there is no guardian or prescribed relative, an adult friend.

4. If there is no-one who meets the previously mentioned categories of persons responsible, an adult charged with overseeing the ongoing day-to-day supervision, care and wellbeing of the patient who is available and can make a decision.

5. If there is no-one who meets the above criteria and who is available and willing to make a decision, upon application, the Guardianship Board can consent to the proposed treatment.

This bill is a very important piece of legislation and, as such, it is important that we, as members of this place, do all we can to examine the legislation and the circumstances in which it has been brought to this place, and any possible issues surrounding it and any unforeseen consequences.

As a result of that, I have been in touch with a number of organisations who will be involved in enforcing this legislation or are having to abide by this legislation, and one in particular that has been brought to my attention is the Salaried Medical Officers Association, through Dr David Pope. Dr Pope wrote to me just yesterday and stated:

The Minister for Health and Aging is to be commended for bringing together the various instruments for making an advance care directive for health and/or appointing a decision maker with a view to increasing people's capacity to direct their care in the event of incapacity.

However, in his letter, Dr Pope continued to outline some areas where the South Australian Salaried Medical Officers Association of South Australia (SASMOA) has some concerns with the legislation. The concerns are stated as follows:

The broad parameters proposed for the ACDs [that is advance care directives] rather than current end phase of life provisions, in which refusals of life sustaining treatment can apply with no requirement for the person to demonstrate they understand the consequences of their decisions. People may make unwitting ACD e.g. refuse Cardio Pulmonary Resuscitation...and present to hospital unconscious with treatable pneumonia or even an accidental drug overdose. They may also use the ACD to intentionally refuse treatment that could save them after a suicide attempt.

Such ACD treatment refusals are binding on all health practitioners, including enrolled nurses, junior doctors, social workers etc and to not follow an ACD at face value could attract professional misconduct, assault and battery charges. The conscientious objection referral clause is unfeasible in an emergency and weakens professional practice and ethics codes.

Health practitioners may be compelled to make an on the spot life or death decision for the patient with an ACD CPR refusal or risk their career when:

the patient could have been saved and brought back to wellness;

treating a reversible complaint would prevent premature death, but the complaint has arisen from the condition which the ACD refusal was made for;

the health practitioner may lack the expertise to evaluate the situation properly and therefore lets the patient die but they could have been easily treated e.g. diabetic coma;

time is needed to verify that the person would still want the ACD given the gravity of the outcome.

Dr Pope continues in his letter stating:

These dilemmas may result in residential care staff preferring to transfer residents to hospital rather than make a decision about ACD application placing increased stress on an already stretched health system.

In a small country hospital, nurses will be on their own to make decisions as doctors are not on site, creating problems for the rural and remote sector.

ACDs may be deliberately overlooked by health practitioners in order to avoid the dilemmas which could ensue, meaning people's wishes are ignored and the Bill loses credibility.

Uncertainty around appropriateness of ACDs adherence may translate to lack of confidence in the system. People may tend to appoint a substitute decision maker without instructions recorded in the form to guide health practitioners. Health services are likely to resort to out of hospital medical orders to safeguard people's wishes and protect clinicians. For example, Do Not Attempt CPR...community forms are used in the UK where the Mental Capacity Act 2005 has embedded similar law to the proposed ACD Bill 2012.

Advance care planning facilitators in South Australia find people are generally comfortable in completing ACDs that are binding at the recognisable end stage of life under the existing Consent Act. They also find education of health practitioners about the role of ACDs under common law, which can apply for other stages, means these are respected appropriately.

Moreover health practitioners are willing to comply with ACD refusals at the end stage of life because it constitutes good care.

It is suggested that the ACD Bill 2012 could be enhanced to avoid the concerns listed if it were amended to enshrine ACD refusals of life sustaining measures as binding when the person is in the terminal phase of a terminal illness or condition and at all other times non-binding.

With this letter, there is a series of amendments that were passed to me. They are outlined and, if the minister does not have them, I am happy to let him have them so that he can answer the concerns of the salaried medical officers so that I can be assured that the bill is going to do exactly what we want it to do—that is, provide good outcomes for people at all stages of life, not just at the end of a debilitating illness or the end stage of a terminal disease.

There are a number of recommendations in this letter—changes to clause 11 and clauses 19 and 36, and these are all about the impact on emergency practitioners and also country areas, the community and after hours. The need to take these concerns into consideration will certainly determine how I vote on this particular piece of legislation, although I very strongly support the intent of the legislation.

Clause 5(2), clause 37, Part 6, clause 23(4) and clause 36(4) are all areas of concern for medical practitioners in South Australia. They have recommended that some of the clauses be amended, some they have recommended be removed and some they suggest be left in other acts, such as clause 23(4), which infers that an express directive could refuse the natural provision of food or fluids or palliation rather than inferring the opposite. The suggestion there is to leave the consent act version, that is, remove the words 'unless there is an express direction to the contrary'.

There is a concern about suicidal patients with capacity making refusal of health care through ACDs. The hospital practitioner's view is:

The bill is silent on the validity or otherwise of refusal of care ACDs made by suicidal persons and only deals [with] suicidal mental health patients by excluding from refusal mandatory treatment made under inpatient treatment orders or community treatment orders of the Mental Health Act...

The comment is:

Work is needed to remove confusion that will arise in practice especially when it is possible but not definite that self harm is the cause of a person being critically unwell...

A number of concerns have been raised there, and I will be interested to see the response to the salaried medical officers' concerns. I look forward to any of those concerns being addressed so that I can support the bill in its final presentation to this place.

The Hon. M.J. ATKINSON (Croydon) (15:53): The bill seeks to amend the law about medical powers of attorney, enduring powers of guardianship and enduring powers of attorney, to gather them into a single instrument and to draw upon the experience of the last two decades since the first was introduced. Although this may seem an obscure area of the law, it is one which will be relevant to us all at some point in our lives, even if we have to wait for our own terminal phase of our final terminal illness to do so.

The legislation and the acts it amends deal with topics that many would prefer not to discuss. A person who omits to canvass end-of-life options with family and those close to him leaves his loved ones uncertain about what his wishes would have been when difficult medical decisions need to be made and the person concerned is not competent in a legal or medical sense to make those decisions.

The legislation and the triple effect statutory instrument that it will offer people will, I hope, further encourage people to have those conversations with a designated substitute decision-maker in much the same way that an increasing number of people now make a will. Just a few generations ago, the making of a will to dispose of assets on death was something only a small percentage of the population did, whereas now a much higher percentage of the population, even those with modest assets, understands the value of a will and how to prepare and execute one. Do-it-yourself versions are readily available and, although it might be that fewer than 50 per cent of Australians have a will, awareness and use of wills is rising.

It gives me no pleasure to say that my prediction in the house in, I think, in 1993, that only a tiny minority would use advance directives under the Consent to Medical Treatment and Palliative Care Act has come true. The number of people who have signed them is tiny, but we hope that the bill will lift that number. Advance directives have been available for less than 20 years, since the enactment of the Consent to Medical Treatment and Palliative Care Act and the Guardianship Act, which introduced the concepts of a medical agent and an enduring guardian. The Hon. Frank Blevins and the Hon. John Burdett had introduced the concept of a living will in the 1980s. Enduring powers of attorney for property and financial matters had been available much earlier.

Having these three related agency matters within three separate acts was confusing and complicated and discouraged, I think, widespread adoption and use of all three. Work to bring them together started when I was attorney-general. The introduction in, I think, 1993 or 1994 of legislation allowing patients to appoint another person, presumably well known to them and whose judgement they trusted, was innovative, and it followed a two-year review by a select committee of the house on the law and practice relating to death and dying and a long, long period of public consultation.

The legislation dealt with difficult matters of life and death and went to the core of medical philosophical and religious beliefs as well as certain long-held legal principles. The law squarely addressed difficult questions at the end of life, such as the withdrawal of treatment and the relief of pain and distress. The Consent to Medical Treatment and Palliative Care Act was supported strongly by the house at that time because it addressed those issues in a much more effective and appropriate way, I think, than legalising physician assisted suicide or mercy killings. The legislation adopted then and the bill before us now expressly ruled out physician assisted suicide or euthanasia. The legislation adopted then and the bill before us now does provide a strong legal framework for the relief of pain and distress among those who are in pain or suffering distressing symptoms.

The bill reinforces patient autonomy and the ability of health professionals to provide pain and symptom relief without fear of legal consequences, even if that treatment shortens the life of the patient. The original legislation and the improvements made in this bill, which update provisions and draw on the experience of the last two decades of practical use, focus on the patient and how his or her wishes can be ascertained and implemented to the best of our ability. Once a person has moved to a phase where he lacks the mental capacity or physical ability to make his own wishes as to his treatment choices known directly, then a mechanism is required for him to express himself through the voice of another. I seek leave to continue my remarks.

Leave granted; debate adjourned.