Substitute decision-makers unprepared for end-of-life choices

A middle aged woman and an older man with a cane walking arm in arm.

Our new study has shed light on the experience of people called upon to make medical decisions for loved ones and found them to be largely unsupported and unprepared for the role.  

Despite our rapidly ageing population and legislation across every Australian jurisdiction allowing for substituted medical decision-making, the study has identified real gaps in available support and information to help people make these weighty decisions with greater confidence and ease.  

People are frequently called upon to act as substitute decision-maker (SDM) when a loved is approaching end-of-life and are no longer able to make their own medical decisions. SDMs may be formally appointed to the role, or automatically eligible through family relationship (e.g. spouse) as stipulated under legislation, which varies across Australia.  

The study found that 13% of people surveyed said that they had acted as SDM, but reported low to moderate understanding of the role. Only 33% of those surveyed were aware of the laws surrounding substitute decision-making.  

The study also found that around 60% of people identified a doctor or health professional as their preferred source of support and information about their SDM role, yet few reported receiving any support from them.  

ACPA led the national cross-sectional study of more than 1000 participants and says they are unsurprised by the findings but believes it builds further evidence that both the public and health professionals need more education and support for advance care planning.  

"Imagine being thrust into a job you didn't apply for, given no training and then you’re expected to make life-and-death decisions for a loved one. That's effectively what happens every day in Australian hospitals,” explains Dr Karen Detering, study co-author, and renowned expert in advance care planning, with a background in respiratory medicine.   

ACPA offers a range of online resources and a free helpline to support people making medical decisions for others, but emphasises that doctors and health professionals play a critical role in supporting and educating the Australian public regarding both substitute decision-making and advance care planning.  

One of the biggest barriers in the healthcare sector supporting people with advance care planning is lack of confidence in leading these sometimes tough conversations and lack of time.  

“We can’t underestimate the real pressures that exist in our busy hospitals and healthcare system, but we also cannot ignore that health professionals have legal and ethical obligations to provide much needed information and support to help very stressed and overwhelmed people who are faced with these decisions,” says Dr Detering.  

 -ENDS- 

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