Health Ethics Australia aims at improving literacy, compassion around death

May 27 2014

Knowledge and information empowers people facing a terminal diagnosis or end of life, delegates heard at the National Medicines Symposium in Brisbane last week.

CEO of Health Ethics Australia and Senior Lecturer in Health Care Ethics, University of Queensland Dr Sarah Winch presented a personal and professional take on death and dying, explaining that an aversion to talking about death in our culture leads to difficulties for those at the end of life, and their families and carers.

She discussed the benefits of individuals and prescribers alike being more comfortable with prescribing and medicines issues that are linked to terminal illness.

"Death and dying is everyone's issue, but it is often so difficult to get the information you need when you or a loved one faces the end of life, or to make sense of the complex information that is available," says Dr Winch.

“For example, someone with end stage cancer might be prescribed a medicine that has the potential to prolong their life but has long lists of common and less common side effects — and the individual and their family would need to understand the risks and benefits of that medicine in order to make an informed decision about whether to take it.

"We can help people to be more comfortable and confident in end-of-life decisions by building skills in troubleshooting, improving access to palliative care, communication between health professionals and consumers, and educating people about how to escalate concerns. We have an excellent healthcare system – but it can be like a broken jigsaw when it comes to the end of life. We need guidance on how to put the pieces together to get the best death possible.

"I believe that it takes a whole village to raise a child, but that the whole village also needs to play its part for that member when they are dying.

"We need to be more open about discussing death and related issues, for example I would like to see robust public debate around the amount of money going into expensive medicines that extend life for short amounts of time."

Dr Winch and committed friends set up Health Ethics Australia to look at improving literacy and compassion around death.

In 2013, she self-published a book titled Best death possible: a guide to dying in Australia. For people and their carers who have received catastrophic news, it shares insights on how to manage the Australian health care system to get the best death possible. It has been well received in e-format and hard copy but now needs an established publisher to improve its availability across Australia and assist with meeting the need for the often requested international version.