RESEARCHERS from the Queensland University of Technology are looking for people in NSW, Queensland and Victoria who have a terminal illness and bereaved families of people who had a terminal illness, to contribute to its study on the end-of-life decision-making process.
The struggle for many patients in putting their hands up for this project is admitting to someone other than themselves, that they fit the project description.
Already one family have put their hand up to talk contribute to the project, but a few days later they withdrew.
The comment back from one family member was that she didn't consider her terminally ill mother to be at the end-of-life so they weren't willing to discuss the issue with the researchers as they hadn't as yet talked about it among their family.
"We understand if people don't feel comfortable, aren't able to talk about this and don't want to take part in research,” QUT director, Australian Centre for Health Law Research's Professor Ben White said.
"For some people battling terminal illness, this is the last on their list while for others they have the view that they want to share some of the things they have learnt from their experience that others will have the opportunity to benefit from as well.”
Prof White said there is research that end-of-life decision-making often is made too late.
"Sometimes it is a very difficult subject to approach and engage with, and tackle, with the result it doesn't get talked about at all or sometimes not until it is too late and when there is not enough time to put in place what they want,” he added.
The Enhancing Community Knowledge and Engagement with Law at the End-of-Life project is researching what are the barriers people are experiencing in participating in decision-making about end-of-life and what sort of things can be done to improve the process.
"We don't know to what extent law plays in decision-making; do people know they have the legal right to refuse treatment, for example,” Prof White said.
"We are researching what is currently there and to work out what support, information and resources that people would like when making their own decisions about their own medical treatment at end-of-life and what support decisions would family like.
"At the heart of it, it is really about making sure people have an opportunity to participate in decision-making and the law is part of that,” Prof White added.
QUT has previously set-up the End of Life Law in Australia website which was designed to help people make these type of decisions.
"The website is a tremendous source of information, but we are trying to find out how these things are put into practice,” Prof White said.
This is stage three of the QUT project which is calling specifically for conversations face-to-face, by telephone or by Skype with people aged over 18 who are -
- A patient with a terminal illness who is involved in their own medical decision-making.
- An adult family member of an adult with a terminal illness who has witnessed or been involved in medical decision-making.
To contribute to this story, patients and family members can contact Michelle Ferguson at firstname.lastname@example.org or on 07 3365 2505.