It's the conversation most of us just don't want to have. Any talk of end-of-life plans on how we would like to be cared for in our dying days is put in the too-hard basket.
And yet, about 100,000 deaths this year in Australia will be "expected", after a serious, life-limiting often chronic condition such as dementia, cardiovascular and respiratory disease and cancer. This figure will increase as the population ages.
"Our community tends to be death-denying," says QUT palliative care expert Professor Patsy Yates whose research team based at QUT's Institute of Health and Biomedical Innovation has just been granted $2.5 million to establish the Centre of Research Excellence for End-of-Life Care by the National Health and Medical Research Council.
"While we see lots of ads from the funeral industry making death quite visible, we still find it uncomfortable to think or talk about what we want our end-of-life care to be. Very few of us write an advance directive that sets out what we want in terms of life-sustaining treatment.
"Today's pattern of disease, dying and death has changed dramatically with the rise of chronic diseases and our health system has not responded well to these changes.
"We know of critical gaps in end-of-life services in Australia that mean we have higher rates of pain and other symptoms than there should be and we lack effective measures to limit treatments that have no real clinical benefit.
"Another problem we have identified is that existing services don't always reach people who need it, especially people who have conditions other than cancer of whom only around 20 per cent access specialised palliative care services.
"All these gaps result in unnecessary visits to hospitals or emergency departments and can lead to patients receiving care that is ultimately not going to improve their quality of life."
Professor Yates said the CRE is a national collaboration involving researchers from four universities with backgrounds in palliative care, chronic diseases, ageing, law and health, social sciences, health economics and health policy.
"Results from the CRE's three research programs will be translated into practical benefits for the community as soon as possible," she said.
"Our research will be about enabling our health system to support people across different parts of the system eg how GPs can work with specialist hospital services for pain relief, how community and health professionals can provide the emotional, practical and financial support needed, and how we can use technology to deliver services to those who need them.
"All these areas must be addressed in end-of-life services to minimise distress and enable everyone to live as well as they can for as long as they can.
"People at the end of life deserve the best possible health care that is consistent with their wishes. This holistic approach to care is necessary to make this happen. We need health services that are better at responding to different needs."
Professor Lindy Willmott will lead a research team from QUT's Health Law Research Centre in two of the CRE's three programs. The research is designed to improve the regulatory framework in which end-of-life decisions are made as well as improving knowledge of patients' and health professionals' so that they can make better decisions at the end-of-life.
Media contact: Rose Trapnell, QUT media team leader, 07 3138 2361 or 0407 585 901 rose.trapnell@qut.edu.au for Niki Widdowson.
