Almost three in every four South Australians believe they should have the final say – not their families – when it comes to organ donation.

Of the 2693 participants in a Flinders University study, 72 per cent felt they had the right to decide what happens to their bodies once they die, as opposed to national guidelines which allow their family to veto their wishes to donate, even if the deceased was a registered donor.

“Many people find it quite confronting that the decision they make over their bodies could be overturned by their families,” principle study investigator, Associate Professor Sheryl de Lacey from the School of Nursing and Midwifery, said.

“It’s an extremely hard thing for families to make those sorts of decisions at such a stressful and emotional time, and in a medical setting it may not be wise to override the family, so we think people should discuss the issues at home so their families know where they stand,” she said.

“People obviously want to make these decisions for themselves so the guidelines really need to marry up what the community thinks should happen with what actually happens.”

The survey, conducted from 2007 to 2010 as part of the South Australian Health Omnibus Survey, aimed to ascertain the community’s views on biological donation, with the findings published late last year in the American Journal of Transplantation.

Almost two thirds of respondents supported organ and tissue donation, 25 per cent said their body should be left whole for cremation or burial and 29 per cent voted in favour of medical research or teaching purposes (16 and 13 per cent respectively).

Other questions surrounded the acceptable time between cardiac death and organ harvesting, with options ranging from immediately to more than an hour.

About 45 per cent of respondents selected a time of up to 10 minutes, which is considered the optimal amount of time to wait before surgery, while 34 per cent selected anywhere from 10 minutes to over an hour, and 20 per cent did not comment either way.

“We asked participants what they considered to be a respectful amount of time for families to say goodbye once the heart stops beating,” Associate Professor de Lacey said.

“It’s a bit different to brain death because when you’re declared brain dead the organs can be kept alive on life support until the family feels ready but with cardiac death, the longer you leave it the less valuable the organs become.”

She said qualitative data collected before the study found there was community apprehension about the need to wait for the soul to leave the body before harvesting.

“There was a concern about what it means to be dead and really dead – people felt that after death there’s a period of time when the soul is in limbo, one participant even suggested a soul measure.

“But what that indicates is that death and organ donation are not just physical or medical events, there are a lot of important social relationships that we have to take into account.”

Associate Professor de Lacey said the study, undertaken in partnership with Macquarie University and the University of Adelaide, highlighted the need for more community discussion.

“Death is a taboo topic, we don’t discuss it and in fact we try to avoid it but getting it out in the open would be really helpful because the more information we have the better.”