Discussing death in the community

24 May, 2011

Almost two in three Australians believe death and dying isn't discussed enough in the community, according to a survey released by Palliative Care Australia (PCA).

  • Survey finds majority of Australians haven't discussed dying with their loved ones
  • Most want to die at home
  • Less than 20 per cent have recorded any sort of plan for their end of life care
  • Palliative Care Australia launches "Let's chat about dying" campaign.

More women (65%) than men (56%) believed death and dying isn't discussed enough, while 73% of respondents aged 65 and over agreed.

Palliative Care Australia Vice President Prof Patsy Yates said while death and dying is not an easy topic for discussion, it's a very important one.

"There's no escaping that we will all die eventually, and everyone deserves quality care at that time. To make that a reality, we need to chat about dying to our loved ones and caregivers. Unfortunately this survey shows this is just not happening," said Prof Yates.

PCA commissioned the independent online survey of 1,000 Australians to gauge community views on dying and palliative care to mark National Palliative Care Week which runs from 22 to 28 May.

PCA has used to the research to shape a new campaign, 'Let's Chat About Dying', to encourage people to talk about this difficult topic. A new range of information resources is now available on PCA's website, www.palliativecare.org.au

"The good news is there are a wide range of specialist carers and services ready to help ensure that Australians have a quality end of life wherever possible. What people need to do is chat about dying, understand what help is available and let their loved ones know what they'd prefer," said Prof Yates.

"Unfortunately we have our work cut out for us here. When asked about the end of their lives, just 32% of respondents said they had discussed their preferences with their loved ones. Not surprisingly, the people most likely to have discussed their preferences were those aged 65+ (51%) and those with adult children (41%).

"Similarly, some 75% said their loved ones hadn't discussed their preferences with them.

"We'd suggest that this is nowhere near enough. When a loved one is dying, it's often a very difficult, emotional period. Understanding clearly what your loved one wants at this time for instance whether they would like to die at home, or what pain relief they can access - makes decision making much simpler during a very stressful period.

"Our survey also asked people where they would prefer to die. Some 44 per cent just haven't thought about it. Of those who had considered it, some 74% said they wanted to die at home. This is consistent with overseas findings but contrasts sharply with the reality.

"We know that the number of people who die at home in Australia has actually decreased over the past 50 years. Now only about 16% of people die at home, 20% die in hospices and 10% in nursing homes. The rest die in hospitals.

"Somewhat surprisingly, 47% of those aged 55-64 years hadn't thought about it, with a significant proportion (34%) of those aged 65+ saying the same thing."

Prof Yates said that while many people carefully prepare financially for dying through wills and estate planning, and even plan and pay for their funerals, few take the time to plan for the process of dying and the type of care they wish for.

"An overwhelming eight in ten haven't recorded anything about what they want to do at the end of their lives, or recorded any sort of care plan.

"We'd urge people to prepare a simple Advance Care Plan, covering likely scenarios near the end of life and communicating their wishes about the type of care they wish for and where they'd like to be at the end of life.

The survey also asked respondents how they would define palliative care, and some 73% answered correctly that it is 'providing the best quality of life possible when people are dying'

"So it seems that while most understand what palliative care is, they need encouragement to actually talk to loved ones about their preferences when it comes to dying.

"So our message is clear don't put it off. Chat to your loved ones about dying, understand what support is out there, and ensure your wishes are clear.

"No one lives forever and we are all entitled to support and comfort during our final days," Prof Yates said.

Source: AAP