Deciding who decides. How are decisions about care at the end-of-life made in ED and ICU?

An article written by Dr Jayne Hewitt, Senior Lecturer in the School of Nursing and Midwifery at Griffith University

Many Australians are now living well into their 80s and beyond. But with longer lives often comes the reality of developing at least one chronic condition—and for many, spending their final days in a hospital or medical setting. Because chronic illnesses can be unpredictable, it’s not always clear when to shift from treatments aimed at curing or managing disease to care that focuses on comfort and reducing suffering as someone nears the end of life. On top of making sound clinical decisions, healthcare professionals also need to understand and apply the legal frameworks that guide treatment choices, including when and how to limit treatment.

Research has shown that there are gaps in healthcare professionals’ legal knowledge when it comes to end-of-life decision-making. Rather than relying on legal frameworks, decisions are often guided by clinical judgement and what’s perceived to be in the patient’s best interest. As with many healthcare decisions, patients and families often expect healthcare professionals’ to initiate conversations about advance care planning and goals of treatment. But in reality, many healthcare professionals don’t have the confidence, or the time, to initiate these discussions—so they’re often delayed until absolutely necessary.

To better understand what influences healthcare professionals’ understanding and use of the law when making decisions to limit treatment in these settings, we interviewed medical practitioners, registered nurses and social workers who work in the emergency department or intensive care unit and care for adults at the end of life. [1]

We found that communication around end-of-life decision-making can be hard. Healthcare professionals wanted to be sure they were making the best decision, and that the patient and family would not feel abandoned at this time. It was important that families could be involved in decision-making but healthcare professionals were mindful that these decisions may be burdensome. Shared decision-making was seen as a way of easing the burden. Where a person lacks decision-making capacity, the law tries to ensure the wishes of the dying person are followed, how the law should be interpreted and applied can be uncertain.

Providing care at the end of life is among the most complex—and profoundly meaningful—responsibilities in healthcare. The law plays a vital role in safeguarding a person's values and wishes, but navigating legal frameworks while striving to make compassionate, inclusive decisions can be challenging. This is why further research is essential—to develop practical strategies that support healthcare professionals in making decisions that are both legally sound and centred on the needs and preferences of patients.

References

1. Hewitt J, May K, Alsaba N, Denny K, Cartwright C, Willmott L, et al. Deciding who decides: An interview study exploring the factors affecting emergency department and intensive care unit health professionals’ understanding and application of the law on end-of-life decision-making. Aust Crit Care. 2025;38(5):101271

Other works of interest

1. Hewitt J, Alsaba N, May K, Kang E, Cartwright C, Willmott L, et al. End-of-life decision-making in the emergency department and intensive care unit: Health professionals' perspectives on and knowledge of the law in Queensland. Emerg Med Australas. 2024;36(3):429-435.
2. Hewitt J, Alsaba N, May K, Cartwright C, Willmott L, White BP, et al. The role of law in end-of-life decision-making in emergency departments and intensive care units: A retrospective review of current practice in a Queensland health service. Aust Health Rev. 2024;48(1):95-102.

Author

Dr Jayne Hewitt, RN BN LLB LLM PhD

Senior Lecturer, School of Nursing and Midwifery, Griffith University

Senior Research Fellow, QEII Jubilee Hospital