Breaking barriers to dying well – update

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“About 70% of Australians have specific wishes about their end of life care but very few get to put these into practice” says Independent Patient Supporter & Advocate, Dorothy Kamaker.

“In the United States it’s estimated that between 25 to 30 per cent of people achieve these wishes but in Australia the figure is less than 14 per cent. I’d like to see that figure improve. One of the biggest barriers is that we don’t talk about it enough,” Dorothy says.

“These wishes are about where people will age and die, what care they will and will not accept and who should be orchestrating that care. Overwhelmingly, people want to age and die at home, surrounded by familiar faces, with no “heroics” and minimal medical intervention.

“However, research shows that most people spend their last years and days in institutional care (a nursing home or acute hospital) with their management in the hands of hospitals, doctors and nurses who are unaware of their end of life wishes and whose ethos is completely alien to their wishes”.

The commonest and most easily overcome barriers to realising end of life plans are denial and lack of planning: people dread having the conversation and they don’t know how to formulate an effective and valuable document expressing their wishes ( Advance Care Directive).

Three years ago Dorothy gave up her work as an intensive care nurse to work privately to help people achieve their goals to age and die in the setting they wish.

“We’re talking about having the style of aged care and palliative care you’d like to have and retaining control of your final years. We need to start planning it better and accessing the professionals who can make it happen for people,” Dorothy says.

To find out more about Patient Advocates Australia go to: www.patientadvocateS.com.au

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