End of life choices

Advance care planning recommendation response summary

Recommendations 1 to 6 are related to Advance Care Planning (ACP) and in particular Advance Health Directives (AHD). These recommendations cover a number of matters including policy and practice, strategy, governance, reporting and education for health professionals.

The WA Government supports recommendations 1 to 6, noting a range of dependencies. An Expert Panel will be appointed by the Attorney General in accordance with recommendation 1; the Panel will also address recommendations 2 and 3. Recommendations 4-6 relating to Advance Care Planning and Advance Health Directives will be led by the WA Department of Health.

Recommendation 1

The Attorney General, in consultation with the Minister for Health, appoint an expert panel to review the relevant law and health policy and practice – and provide recommendations in relation to the following matters:

• The establishment of a purpose-built central electronic register for Advance Health Directives that is accessible by health professionals 24 hours per day and a mechanism for reporting to Parliament annually the number of Advance Health Directives in WA. 
• A requirement that health professionals must search the register for a patient’s Advance Health Directives, except in cases of emergency where it is not practicable to do so.
• Amendments to the current Western Australian template for Advance Health Directives in order to match, as a minimum, the leading example across Australia, taking into account Finding 7.
• Consider how the increasing number of people diagnosed with dementia can have their health care wishes, end of life planning decisions and advance health directives acknowledged and implemented once they have lost capacity.

Recommendation 2

The Attorney General, in consultation with WA Health, and relevant health professional bodies, undertake an immediate and extensive program to educate health professionals about:

• The nature, purpose and effect of advance health directives and enduring powers of guardianship
• How to identify a valid advance health directive; and
• How to identify the lawful substitute treatment decision-maker.

Recommendation 3

The Attorney General, in consultation with WA Health, provide greater education for the wider community about:

• Advance health directives
• Enduring guardians; and
• The hierarchy of medical treatment decision-makers.

Recommendation 4

WA Health immediately develop a strategy to ensure that when an AHD is provided by a patient to a hospital, it is easily accessible and stored prominently on the medical record – until there is a central database.

Recommendation 5

The Minister for Health recommends to the Council of Australian Governments an amendment to the Medicare rebate schedule to include preparation of advance health directives with general practitioners.

Recommendation 6

The Minister for Health report to Parliament annually on the number of advance health directives held on hospital medical records in Western Australia.

• Business processes and system requirements for an Advance Health Directive Register (PDF 1MB)

End-of-Life and Palliative Care recommendation response summary

Recommendations 7 to 18 relate to End-of-Life and Palliative and cover a number of matters including:

• Palliative care service provision across WA
• Palliative care service models and funding
• End-of-Life and palliative care policy and governance
• End-of-Life and palliative care education for health professionals and the community.

The WA Government supports the aforementioned recommendations, noting dependencies. Many of the recommendations build on preceding and current work being undertaken by the Department of Health described in the WA End-of-Life and Palliative Care Strategy 2018-2028 and The End-of-Life Framework.

The WA Cancer and Palliative Care Network Policy Unit is undertaking further consultation and planning on the implementation of recommendations 7 to 18.

Recommendation 7

The Minister for Health should facilitate the establishment of an inpatient specialist palliative care hospice providing publicly funded beds in the northern suburbs of Perth.

Recommendation 8

The Minister for Health should ensure that community palliative care providers, such as Silver Chain, are adequately funded to provide for growing demand.

Recommendation 9

WA Health should conduct an independent review, from a patient’s perspective, of the three models of palliative care in Western Australia; inpatient, consultative and community. The review should examine the benefits and risks of each model and the accessibility of each across the state as well as the admission criteria for hospice care.

• Independent review – Consumer perspectives of palliative care service models – Summary report (PDF 588KB)
• Independent review – Consumer perspectives of palliative care service models – Summary report at a glance (PDF 216KB)

Recommendation 10

WA Health should implement a process to determine the unmet demand for palliative care and establish an ongoing process to measure the delivery of palliative care services with the aim of making those services available to more Western Australians.

Recommendation 11

To improve understanding of palliative care in Western Australia, WA Health should:

• Establish a consistent definition of palliative care to be adopted by all health professionals;
• Provide comprehensive, accessible and practical information and education services about palliative care to health professionals and the community;
• Encourage knowledge sharing by palliative care specialists with their generalist colleagues; and
• Establish a palliative care information and community hotline.

Recommendation 12

The Minister for Health should prioritise policy development and improved governance structures for the delivery of palliative care by WA Country Health Services.

Recommendation 13

The Minister for Health should ensure regional palliative care be adequately funded to meet demand.

Recommendation 14

Once a consistent definition of palliative care has been established by WA Health in accordance with Recommendation 11, the Minister for Health should appoint an independent reviewer to audit:

• The level of palliative care activity actually provided in Western Australia’s hospitals and compare it against the level of recorded palliative care activity.
• The actual spend by WA Health on palliative care on a year-by-year and like-for-like basis, across all aspects of palliative care provision, including community service providers, area health services (including WA Country Health Services) and delineating between inpatient, consultancy and community care.

Recommendation 15

WA Health should provide ongoing professional development for all health professionals – beyond undergraduate training – about the right of a patient to refuse medical treatment.

WA Health should also specifically amend the Consent to Treatment Policy to provide comprehensive information in relation to a competent patient’s absolute right to refuse medical treatment.

Recommendation 16

WA Health should provide ongoing professional development – beyond undergraduate training – for all health professionals regarding the absolute right of a competent patient to refuse food and water. Training should also include those working in aged care.

Recommendation 17

WA Health should provide ongoing professional development – beyond undergraduate training – for health professionals about the transition from curative to non-curative end of life care and effective discussions with patients and families about futile treatments.

WA Health should consider how it might effectively educate the community about end of life decision-making, and implement appropriate health promotion in this area.

Recommendation 18

WA Health should provide specific guidelines on the use of terminal sedation by health professionals for patients at the end of life. These guidelines should include an agreed name and definition of the treatment.

As per any other medical treatment, the requirement for informed consent must be clear.

The treatment must be specifically noted in the medical record as 'terminal sedation.'

• Statewide guidance for the safe, effective and ethical use of palliative sedation (PDF 991KB)

Voluntary assisted dying recommendation response summary

“The WA Government supports recommendations 19, 21 and 24. A Ministerial Expert Panel (MEP) will be appointed to assist in the consultation and development of legislation for a safe and compassionate voluntary assisted dying framework for Western Australia. A Government bill will be introduced into Parliament for voluntary assisted dying.

Recommendations that include specific detail on the development of the legislation (Recommendations 20, 22, 23) are supported, noting that the MEP will provide advice on these matters. The MEP will undertake the required consultation in order to provide expert advice and direction on the development of the legislation.”

Recommendation 19

The Minister for Health should ensure that any bill to introduce a legislative framework for voluntary assisted dying is introduced by the government.

The Minister for Health should ensure that health professionals are not compelled to participate if any voluntary assisted dying framework is developed for Western Australia.

The Minister for Health establish an expert panel including health and legal practitioners and health consumers to undertake consultation and develop legislation for voluntary assisted dying in Western Australia, and that this report, together with the Framework contained at the end of Chapter 7, be considered by that Panel.

The Minister for Health should ensure that legislation require that death be reasonably foreseeable as a consequence of the condition.

That the Minister for Health ensure the eligibility requirement in the legislation include that the person is experiencing grievous and irremediable suffering related to an advanced and progressive terminal, chronic or neurodegenerative condition that cannot be alleviated in a manner acceptable to the person.

The Western Australian government develop and introduce legislation for voluntary assisted dying having regard to the recommended framework and following consultation with the Panel established under Recommendation 21.