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Australians, young and old, are being asked to plan for a future scenario where they are unable to make decisions about the healthcare they would, or would like not to, receive.

During National Advance Care Planning Week, which runs from 22-26 March, community and health sector organisations from across Australia are raising awareness about an often poorly understood health issue – advance care planning.

Advance care planning is the process of planning for one’s future healthcare. Often related to the care received at end-of-life, the plan ensures people receive the healthcare they want, based on their values and preferences, if they were to become seriously ill and injured and were unable communicate or make decisions.

According to Advance Care Planning Australia, about a third of people will be unable to make their own end-of-life medical decisions. Yet, few people take the steps required to control their future medical care.

“Most of us expect to have a say in our medical treatment, however a sudden event, or gradual health decline may leave people without a voice or choice, if no plan is in place,” said Dr Chris Moy, Advance Care Planning Australian (ACPA) ambassador and Vice-President of the Australian Medical Association (AMA).

“Less than 15% of Australians have an advance care directive. This means that millions of Australians are unaware that they have given up their ability to control their own destiny should they lose decision-making capacity.”

Dr Moy suggests not having a plan in place often leaves loved ones with the burden of making heart-breaking decisions blindly.

Worryingly, a new national cross-sectional study led by ACPA found that people called upon to make medical decisions for loved ones are largely unsupported and unprepared for the role.

Despite Australia’s rapidly ageing population and legislation across every jurisdiction allowing for substituted medical decision-making, the study identified gaps in available support and information to help people make these significant decisions with greater confidence.

People are often called on to act as substitute decision-maker (SDM) when a loved one is approaching end-of-life and is no longer able to make their own medical decisions. SDMs may be formally appointed to the role or automatically eligible through family relationships as stipulated under legislation, which varies from state to state.

The study of more than 1000 participants found 13% of people surveyed said they had acted as SDM, but had low to moderate understanding of the role. Only 33% of those surveyed were aware of the laws surrounding substitute decision-making.

The study also showed 60% of people identified a doctor or health professional as their preferred source of support and information, yet few reported receiving support from them.

ACPA argues the study provides further evidence that both the public and health professionals need more education and support when it comes to 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,” study co-author, and advance care planning expert, Dr Karen Detering said.

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

Barriers preventing the healthcare sector from supporting people with advance care planning include a lack of confidence in leading tough conversations, and insufficient 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,” Dr Detering said.

An initiative of ACPA, and funded by the Australian government, National Advance Care Planning Week encourages people to visit the organisation’s website, which provides all the information required to get started with advance care planning, from starting a conversations with family to accessing the relevant forms.

“We want to empower people to take active control of their future care and ensure their preferences are known and respected,” said Linda Nolte, ACPA Program Director.

National Advance Care Planning Week runs from 22-26 March.