Advance care directives legislative review

Consultation Process

UPDATE: Below is a record of what appeared on YourSAy during the open consultation process from 24 April 2019 to 24 May 2019.

We are reviewing the Advance Care Directives Act 2013 and we want your feedback and ideas on how well you think the act is working.

What is being decided?

An Advance Care Directive (ACD) enables people to specify how they want decisions to be made for them, if and when they are unable to make decisions for themselves.

The Advance Care Directive Act 2013 empowers all South Australians to make clear legal arrangements for their future health care, end of life, preferred living arrangements and other personal matters. It replaces the existing Enduring Power of Guardianship, Medical Power of Attorney and Anticipatory Direction with a single, Advance Care Directive Form.

We want to understand if there are any issues or concerns with how the Act is currently operating, and if it could be improved. To find out more about the review read the Terms of Reference.

Get involved

To tell us what you think:

• take the online survey for substitute decision makers
• take the online survey for general feedback on Advanced Care Directives
• email your feedback to HealthPolicyLegislation@sa.gov.au

How can your input influence the decision?

Your views on how Advance Care Directives are operating in South Australia are important in deciding whether any provisions of the Act need to be reformed or anything done differently so that people feel confident to complete an Advance Care Directive. Your input will shape any changes made to the Act or its operation.

What are the next steps?

All feedback will be analysed and a final report with recommendations for improving the Act and its operations. prepared for the Minister for Health and Wellbeing. The report about the review is scheduled to be tabled in Parliament in August 2019.

The report will be made publically available.

Contact

For more information about this consultation

• email: HealthPolicyLegislation@sa.gov.au
• phone: 8226 6047

For further information about ACDs or to set up your own ACD visit the Advance Care Directives website.

Closing date: 5pm Friday 24 May 2019

Background

The Advance Care Directives Act 2013 (the Act) came into operation on 1 July 2014 in South Australia. It is a requirement of the Act that it is reviewed after 5 years of operation and a report tabled in parliament.

Summary of the Advance Care Directives Act 2013

What is an Advance Care Directive (ACD)?

At some point in your life there may come a time when you are unable to make your own decisions. This may be because of:

• a sudden accident or serious mental health episode
• dementia or a similar condition
• a sudden serious stroke
• the fact that you are unconscious or in a coma.

If any of these things happened, how would you want decisions to be made about your health care, living arrangements and other personal matters? More importantly, who would you want to be making these decisions on your behalf?

An Advance Care Directive empowers you to make clear legal arrangements for your future health care, end of life, preferred living arrangements and personal matters. It also enables you to nominate one, two or three Substitute Decision Makers to make these decisions on your behalf while you are unable to make decisions.

If you want to revoke your ACD, and you retain your decision making capacity and understand the implications of revoking your ACD, you can complete another ACD (which revokes the original) or provide written advice that you have revoked your ACD.

If you are unable to make your own decisions, or specific decisions, and do not appear to understand the consequences of revoking an ACD then you (or someone on your behalf) can apply to the South Australian Civil and Administrative Tribunal (SACAT) to revoke the ACD. If SACAT are satisfied about a number of matters they may revoke the ACD.

What cannot be included in an ACD?

The Act specifies that an ACD cannot make provisions for;

• a provision that is unlawful; or
• that would require an unlawful act to be performed (eg euthanasia) or;
• that would, if it was given effect, cause a health professional or other person to contravene a professional standard or code of conduct;
• a provision that comprises a refusal of mandatory medical treatment eg treatment ordered by a court or under the Mental Health Act 2009.

An ACD cannot give a power of attorney, such as a financial power of attorney to enable someone else to manage the person’s funds.

Substitute Decision Makers

The Act enables 1 or more Substitute Decision Makers to be appointed however there is no obligation for any to be appointed. The ACD form allows for a maximum of three.

If you don’t appoint a Substitute Decision Maker you can give your instructions about what you want if you can’t make your own decisions in your ACD. The Act states that a Substitute Decision Maker may make any decision that the person who gave the ACD could have lawfully made in respect of:

• health care
• residential and accommodation arrangements
• personal affairs

The Act also states that a Substitute Decision Maker cannot refuse:

• the administration of drugs to relieve pain or distress
• the natural provision of food and liquids by mouth

Giving effect to ACDs

A Substitute Decision Maker can only make a decision under an ACD if, at the time a decision needs to be made, the person who gave the ACD has impaired decision making capacity in regard to the decision being contemplated.

The Act defines impaired decision making capacity in some detail. In essence impaired decision-making means that a person is incapable of:

• understanding any information about the decision or its implications; or
• retaining this information; or
• using such information in making the decision; or
• communicating his or her decision in any manner; or
• the person has satisfied any requirement they put in their ACD about when they are to be considered to have impaired decision-making in respect of a decision of a relevant kind.

The Act also specifies that a person will not be considered to have impaired decision making merely because:

• they cannot understand matters of a technical or trivial nature; and
• they can only retain information for a limited time; and
• they may fluctuate between having impaired decision-making and full decision-making capacity; and
• a person’s decision making capacity won’t be taken to be impaired merely because a decision made by the person results, or may result in an adverse outcome for the person.

A Substitute Decision Maker can only make a decision under an ACD if the person concerned has impaired decision making capacity. This is why determining whether or not a person does have impaired decision making is important.

When can a Substitute Decision Maker give effect to an ACD?

When a Substitute Decision Maker is making a decision under an ACD they must as far as reasonably practicable:

• do what the person giving the ACD instructed or directed in their ACD
• seek to avoid any outcome or intervention that the person who gave the ACD would wish to be avoided whether this is implied or expressed in the ACD
• obtain and have regard to the wishes of the person who gave the ACD, whether these wishes are implied or expressed
• try to make the decision in line with the principles which are set out in the Act.

In addition the Substitute Decision Maker must make the decision that they reasonably believe the person would have made in the circumstances and must act in good faith and with due diligence. How are health practitioners to give effect to ACDs If a person with an ACD has impaired decision-making capacity in respect of a decision that is required in relation to their health care, a health practitioner who provides the health care:

• Must comply with a binding provision of the ACD that relates to health care of the relevant kind; and
• Should as far as reasonably practicable, comply with a non-binding provision of the ACD which relates to health care of the relevant kind; and
• Must try to avoid any outcome or intervention that the person would wish to avoid; and
• Must try to provide the health care in a manner that is consistent with the principles set out in the Act.

A health practitioner may refuse to comply with a provision of an ACD if they believe on reasonable grounds that:

• the person who gave the ACD did not intend the provision to apply in the circumstances; or
• the provision does not reflect the current wishes of the person who gave the ACD.

A health practitioner may also refuse to comply with an ACD if the health care requested by the person who gave the ACD is not consistent with relevant professional standards or does not reflect current standards of health care in South Australia.

This does not apply however in relation to a binding provision of an ACD or if the specified health care comprises the withdrawal or withholding of health care to a person and this includes the withdrawal or withholding of life-sustaining measures. The Act cites the example of a “do not resuscitate” instruction in an ACD as a provision which cannot be overridden unless it can be justified by another provision in the Act.

Dispute resolution, reviews and appeals

Office of the Public Advocate If there are any disputes about an ACD, for example Substitute Decision Makers can’t agree about a matter, the parties may seek the assistance of the Public Advocate. The Public Advocate may use mediation to resolve the dispute and may also issue a declaration:

• about the nature and scope of a person’s powers or responsibilities under the ACD
• stating whether or not a particular act or omission is within the powers, or discharges the responsibilities of a person under the ACD
• stating whether or not the person who gave the ACD has impaired decision-making capacity in relation to a specified decision.

The Public Advocate may also give any advice that they consider necessary or desirable in the circumstances of the case. In certain circumstances the Public Advocate can refer a matter to the South Australian Civil and Administrative Tribunal for resolution and may refer any question of law for the opinion of the Supreme Court. South Australian Civil and Administrative Tribunal The Act requires that the South Australian Civil and Administrative Tribunal (SACAT) must, as far as is reasonably practicable, give full effect to the wishes of the person who gave the relevant ACD.

An eligible person may apply to SACAT for a review of a matter dealt with by the Public Advocate or a declaration or direction in relation to particular matters. On determining an application SACAT may confirm, cancel or reverse a decision that is the subject of the review or confirm, vary or revoke a declaration. In any case SACAT may make any declarations that it thinks are necessary or desirable in the circumstances of the case and give any directions considered necessary or desirable. This can include a direction that particular health care is withdrawn or withheld from a person. SACAT cannot compel a health practitioner to provide particular health care to a patient. In particular circumstances, such as if a Substitute Decision Maker is no longer willing to continue in that role or has been negligent in their duties or was ineligible to be appointed in the first instance, SACAT may revoke the appointment.

If the Substitute Decision Maker is removed the ACD should not be revoked if there are provisions which can still stand without a Substitute Decision Maker.

Urgent review by Supreme Court of substitute decision-maker’s decision

A health practitioner or any person who has, in the opinion of the Court, a proper interest in how a Substitute Decision Maker is exercising their powers, may ask the Court to review a decision of the Substitute Decision maker.

A review in these circumstances can only ensure that the Substitute Decision Maker’s decision is consistent with the ACD and the Act. A review cannot be conducted about a decision to withdraw or withhold health care if the person concerned is in the advanced stages of an illness, without any real prospect of recovery, and the effect of the health care would be merely to prolong the person’s life.

Further provisions

The Act contains some further provisions about how SACAT should operate and miscellaneous matters including the requirement that the Act must be reviewed.

For further information about Advance Care Directives or to set up your own ACD visit the Advance Care Directives website