Written by Carolanne Barkla, Chief Executive, Aged Rights Advocacy Service. (@saagedrights)

Australians are living longer and mostly enjoying the benefits of longevity.[1] However, we also need to acknowledge that death will come. The rise of chronic illness as a cause of death for older Australians requires different palliative care approaches compared to those developed in response to care of people with cancer.[2] The potential loss of our human rights when living with frailty, mental illness, and dementia as death approaches can cause people fear.[3]

The recent Royal Commission into Aged Care Quality and Safety Report, Care, Dignity and Respect made 148 recommendations including establishment of a new Aged Care Act that puts ‘older people first, enshrining their rights and providing a universal entitlement for high quality and safe care based on assessed need’.

The report notes that the requirement to enshrine those rights within the Aged Care Act is essential to ensuring the core principles of the Act are based on rights.  One of those rights within the new Act must be the right to a good death. This could be described, as suggested by Palliative Care Australia, as a ‘right to fair, equitable and non-discriminatory access to palliative and end of life care.’ The principles attached to this statement align with human rights principles of dignity, equality and mutual respect.[4]

Older people, their families, and the community, expect that palliative and end of life care is core business for aged care providers. This is a matter of trust between them, the provider and the government who funds the care component of aged care services. There is no doubt that many aged care providers are supporting older people receiving aged care services to die well, but clearly more needs to be done.

The right to have a good death is increasingly being extended in some jurisdictions by Voluntary Assisted Dying (VAD) legislation and aged care providers will need to address access to the VAD pathways.[5]

Whilst acknowledging reforms to date, and with the government moving to address many of the 148 recommendations, there is still significant concern about resourcing, including ongoing dementia and palliative care education. An adequate well-resourced workforce[6] is also essential to ensure that high quality palliative and end of life care is evidence based and results in optimal delivery and outcomes.

This also leads to the question of contemporary aged care standards which need to link with human rights, ensuring palliative and end of life standards are comprehensive and meet best practice.[7] The community also believes that if the outcome falls below the expectation of the standard and causes harm there should be consequences, such as civil penalties and compensation for harm.[8]

Respect for human rights is the cornerstone of strong communities.[9] Older people deserve no less than full implementation of the Royal Commission into Aged Care Quality & Safety recommendations, including the right to a good death.[10] That is what we would all wish for one another and should demand from governments.

References

1. Australian Institute of Health and Welfare: Deaths in Australia, Life Expectancy, Last updated 25 June 2021:  https://www.aihw.gov.au/reports/life-expectancy-death/deaths-in-australia/contents/life-expectancy.
2. Australian Institute of Health and Welfare: Chronic Conditions and Multimorbidity, Last updated 23 September 2020: https://www.aihw.gov.au/reports/australias-health/chronic-conditions-and-multimorbidity
3. Royal Commission into Aged Care Quality and Safety, Final Report: Care, Dignity and Respect, Volume One Summary and Recommendations, Chapter 1.2, page 61. Also raised directly with our service by clients.
4. Australian Human Rights Commission, What are human rights? Accessed 24 May 2022: https://humanrights.gov.au/about/covid19-and-human-rights/what-are-human-rights
5. Voluntary Assisted Dying in South Australia:  https://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet​/services/primary+and+specialised+services/voluntary+assisted+dying/​voluntary+assisted+dying+in+south+australia
6. A Matter of Care: Australia’s Aged Care Workforce Strategy: https://www.health.gov.au/resources/publications/a-matter-of-care-australias-aged-care-workforce-strategy Note, the impact of Covid19.  See also the work of Research Institute for Palliative Care, Death & Dying: https://www.flinders.edu.au/research-centre-palliative-care-death-dying and also
7. Royal Commission into Aged Care Quality and Safety, Final Report: Care, Dignity and Respect, Volume One Summary and Recommendation 2.
8. Royal Commission into Aged Care Quality and Safety, Final Report: Care, Dignity and Respect, Volume One Summary and Recommendations 101, 102 and 103.
9. Australian Human Rights Commission, What are human rights? Accessed 24 May 2022: https://humanrights.gov.au/about/covid19-and-human-rights/what-are-human-rights
10. Royal Commission into Aged Care Quality and Safety, Final Report: Care, Dignity and Respect, Volume One Summary and Recommendations.