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Live for today, but plan for tomorrow: Removing the stigma of talking about death

This week is National Advance Care Planning Week, and we are encouraging people to "live for today, but plan for tomorrow" by creating an Advance Care Plan. An Advance Care Plan lets you say what you would want at the end of your life, if you are ever unable to communicate for yourself.

To further support this event, we have released our own report into End-of-Life Care within our region, Caring for People at End of Life, which was commissioned to understand the current use of Advance Care Planning and to help identify the future planning needs for End-of-Life Care services.

What our report has highlighted is that people feel uncomfortable talking about death which means End-of-Life Care discussions are starting at a time of crisis. Under these circumstances, the person involved is often no longer able to make decisions for themselves. This can leave family members unprepared and can result in decisions being made that may not align with the person’s own wishes. The result is often unnecessary hospitalisations, or as brought to light in interviews for the report, can result in people dying in ambulances or in emergency rooms rather than at home, or in a preferred place surrounded by loved ones.

Among its key recommendations, our report encourages initiating End-of-Life Care discussions early, preferably before the person enters their last year of life, and advocates the use Advance Care Planning to ensure that a person’s wishes are known and respected. Advance Care Planning involves discussion with health professionals, family and friends, and could include a written Advance Care Directive document. People can upload their Advance Care Planning documents to their own My Health Record which can then be viewed by their GP or other registered clinicians with permission. Currently less than 10% of the population die with an Advance Care Plan.

Data from Dying to Know Day shows that many people find death difficult to talk about. 75% of people have not had End-of-Life discussions, yet 60% think we don’t talk enough about death. Our report also emphasised the need to normalise death by creating a death literate community who can think about and discuss death, understand the healthcare options available and articulate what they want at the end of their life. The report found that appropriate and timely use of Advance Care Planning would ensure that people’s wishes and preferences for the end of their life were recorded and respected, potentially improving the end of life experience for both patients and their families. This planning would support better decision-making, realistic planning, and help families and carers manage the dying experience more positively.

Death is an inevitable part of life. This National Advance Care Planning Week is a timely reminder to all of us to make our wishes for the end of our lives known. I encourage people to talk about their wishes not only with their GP and other health professionals, but most importantly with their family, to ensure their choices are respected.

More Information:

Caring for People at End of Life - Report 
More about Advance Care Planning - NBMPHN Website
Advance Care Planning Australia  - Website

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Lizz Reay's avatar
Lizz Reay is the CEO of Wentworth Healthcare, provider of the Nepean Blue Mountains Primary Health Network. Previously Deputy CEO of Nepean Blue Mountains Medicare Local & Nepean Division of General Practice, she has an extensive background in public health.
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