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Australians not planning end of life care or options

A survey undertaken by Palliative Care Australia (PCA) for National Palliative Care Week, running 19-26 May, found most Australians are not prepared for or avoid planning their end of life options and are putting off the decision.

Reasons people gave for not looking into end of life options included the belief they are too young or it was too uncomfortable to talk about with the family member or family. [Source: Shutterstock].
Reasons people gave for not looking into end of life options included the belief they are too young or it was too uncomfortable to talk about with the family member or family. [Source: Shutterstock].

A survey of 1,000 Australians uncovered 79 percent of people think it’s important to talk about their preferences for end of life care with loved ones, but only 25 percent had actually talked to their family and only 6 percent had inquired with their doctor.

Most survey participants had particular reasons why they weren’t looking into end of life options, with 40 percent stating they weren’t currently sick, 30 percent said they were too young to think about it, 24.5 percent said it was uncomfortable to talk about. Another 21.2 percent said they didn't want to upset their loved ones.

PCA Deputy Chair, Judy Hollingworth, says the results find most Australian know they should be looking into end of life options, but are putting off the inevitable.

Ms Hollingworth says, “During National Palliative Care Week we’re challenging Australians to put those fears to the side, reflect on what matters most to them, and start a conversation with their loved ones.

“These results show a large disconnect between what people think is important, and their actions. Palliative Care Australia’s Dying to Talk initiative aims to reduce that disconnect. “For some people, it might be really important that they have the chance to tick off final things on their bucket list, while others will want to spend quality time with their families, rather than have further medical interventions that would impact on that quality time.”

Other findings from the survey shows that the four most important things to Australians at the end of their life include being free from pain, being in the place they choose, able to enjoy their last days and having support from loved ones.

Newly opened Flinders Research Centre for Palliative Care, Death and Dying in Adelaide says 50 percent of people needing palliative care are dying in hospitals alone and hidden away.

The research centre opened the week before National Palliative Care Week and has brought together experts to explore and progress end of life care.

While dying is a normal part of life, options for end of life care is usually left up to health professionals rather than family or the person who needs palliative care.

The aim of the research centre is to get patients, family and carers more active in conversation of end of life care.

Professor Jennifer Tieman, director of the new Flinders Research Centre for Palliative Care, Death and Dying, says “We do a lot of planning with pregnancy and our lifelong finances, but what about the end of life?”

“The topic is very important for all of us and is the focus of widespread research, including to expand support for dementia patients and their families, and older Australians with progressive chronic and acute diseases and symptoms.

“We need to equip patients, their families and carers and health professionals with positive and helpful information – particularly given the demographic rise in the baby boomer generation and overcrowding of public hospitals and residential care facilities.”

Aged and palliative care researchers are looking into the “future of death” to create personalised tools to make death and dying an easier topic to talk about.

Online resources from the research centre include the End of Life Directions for Aged Care (ELDAC) website, and a online course called Dying2Learn.

Associate Professor Kim Devery says, “Few of us like to think too much about the end of our lives, however death is a part of life. One Australian dies every 3 minutes and 17 seconds, and the death rate is projected to double in the next 25 years as the ageing population increases.”

Around one in four people have had a family member or someone close to them die in the last 12 months.

Ms Hollingworth says that even though death affects a quarter of the Australian population every year, it’s still something people struggle to talk about.

“Take the time this National Palliative Care Week to prioritise yourself, think about what matters most to you, and start the conversation,” she says.

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