May 26, 2016

Talking about dying is vital for those with chronic illness

Too few people with complex chronic illnesses have taken adequate steps to ensure their end-of-life wishes are clear, according to a new national survey released today by Palliative Care Australia (PCA).

The survey shows those with complex chronic illness* were more likely than the rest of the population to have a will (60% versus 43%) and a Power of Attorney (36% versus 16%). However, only 31% of people with complex chronic illness had nominated someone to make health decisions on their behalf and only 12% had an advance care plan.

PCA CEO Ms Liz Callaghan said Palliative Care Week (22-28 May) focussed on ‘Living Well with Chronic Illness’, provides the perfect opportunity for friends and family to encourage people with complex chronic conditions to make their wishes known.

“Our survey shows that most people with these serious conditions do not have adequate plans in place to ensure their doctors and loved ones understand what they want at the end of life,” Ms Callaghan said.

“Although 78% of people with a chronic illness think it is important to put their wishes about end-of-life care in writing, only about half of them report having done this,” Ms Callaghan said.

Lung Foundation Australia CEO Heather Allan encourages people with chronic illnesses to document their end-of-life wishes.

“End of life planning isn’t just about your will or insurance, but also what is going to make you most comfortable, whether that is during the last two weeks or the last two years of your life.

“It extends beyond whether or not you want to be resuscitated, to many other issues that affect how well you live, like living at home for as long as possible and what community services will best help you to manage symptoms,” Mrs Allan said.

Survey respondents were asked to nominate the three issues they would consider most important if they were dying. The top three were being free from pain and physical distress, being free from psychological distress and being in the place of their choice (home, hospital, hospice or aged care).

“It is really helpful for family and friends to understand your wishes and values, should you be unable to make important decisions for yourself.”

Ms Callaghan said PCA had developed a Discussion Starter, which provides a step-by-step guide with activities to help people talk about their end-of-life care wishes.

“Once you know what you want to say, it provides tips on how to start talking to your loved ones and health professionals,” she said.

The Dying to Talk Discussion Starter is available from

* Complex chronic diseases including heart disease, dementia or Alzheimer’s disease, cancer, chronic obstructive pulmonary disease and kidney disease which, according to the Australian Institute of Health and Welfare, represent the five leading causes of death.