End of life law in aged care practice
A guest blog post by Penny Neller, Professor Lindy Willmott and Professor Ben White, Australian Centre for Health Law Research, QUT
(First published on the End of Life Directions for Aged Care Blog, 8 October 2018, reproduced with permission).
End of life law governs medical decisions made at the end of life, as well as around Advance Care Planning.
Every year in Australia thousands of deaths occur following a medical decision to withhold or withdraw life-sustaining treatment. This is just one type of end of life decision which may arise in aged care practice. For example, health professionals and aged care workers may also be called upon to:
•decide whether to follow a person’s Advance Care Directive;
•identify the substitute decision-maker for a person who lacks capacity;
•determine the appropriate level of pain and symptom relief that can be given to a person; or
•decide whether or not to provide emergency treatment, or transfer a person to hospital.
In these situations, health professionals and aged care workers perform a legal role. To do this effectively (and to understand what is lawful, and what is not) they need to know end of life law, and where to go for information and advice to manage legal issues. To support health professionals and aged care workers, End of Life Directions for Aged Care (ELDAC) has developed the Legal toolkit with information and resources to help them tackle legal issues that commonly arise in aged care practice.
Using the Legal toolkit can:
- Help to manage difficult situations that arise in practice. A common example is uncertainty about whether it is lawful to provide palliative medication to a person for pain and symptom relief. Knowing the law can help health professionals and aged care workers to understand what action is allowed, and enables them to provide appropriate care.
- Reduce legal risk. Better legal knowledge can help health professionals and aged care workers to act lawfully, and reduce the risk of criminal or civil liability.
- Improve communication with individuals, their families and substitute decision-makers. Disputes about treatment decisions can often arise because of different understandings about the law.
- Enhance health professionals’ and workers’ confidence and ability to support people receiving aged care, their families, or colleagues where legal issues arise. An example is a resident seeking an aged care worker’s help to undertake Advance Care Planning, or a family seeking information about making decisions regarding care or treatment for a family member.
- Deliver high quality, appropriate care when legal situations arise.
Most importantly, understanding the law matters to the people being cared for, and their families. The law is designed to protect individuals’ rights so that people receive treatment that is consistent with their goals and preferences. Respecting a person’s care and treatment decisions can support them to be comfortable for the remainder of their life, and experience a ‘good death’.
The ELDAC Legal toolkit was designed by end of life law experts. It contains factsheets, mythbusters, case studies and resources on each of the following legal topics: Capacity and consent to medical treatment; Advance Care Directives; Substitute decision-making; Withholding and withdrawing life-sustaining treatment; Medication for pain and symptom relief; Futile or non-beneficial treatment. There is also a factsheet which provides an overview of End of life law for the Aged care sector, and explains the role of law in aged care practice.
Unfortunately, end of life law is complex, and can be complicated to apply in practice. The law that applies is different depending on whether or not a person has capacity. The law also differs across Australia, as each State and Territory has its own end of life laws. To help address this the factsheets provide a general overview of Australian law each topic, and contain useful links to End of Life Law in Australia, a website created by the toolkit authors which provides detailed information on end of life law in each Australian State and Territory.
The mythbusters clarify common myths about the law, while the case studies (which are based on real issues in aged care) show how the law applies to aged care practice.
From late January 2019 toolkit users will also be able complete online training modules about end of life law through the End of Life Law for Clinicians training project at QUT. Links to the training modules will be uploaded to the legal toolkit in early 2019. For further information and updates about the online training modules email firstname.lastname@example.org.