Could you give their heart away?
A international leader in successful organ transplants, Australia still has one of the lowest donation rates in the world. Lucy Cormack asks why.
It’s a frightening thought, to be asked to give away the vital organs of our loved ones.
But for registered nurse and PhD student, Holly Northam, it’s even more frightening that less than 60 per cent of Australian families ever say yes.
A recognised leader in successful transplants, Australia has one of the lowest organ and tissue donation rates in the developed world.
In her ten years of medical experience, Northam has seen a stark conflict between the approach taken by hospitals requesting donations and the reactions of potential donor families.
It’s the “agony of the human aspect of organ donation”, said Northam, which prevents shocked and grief-stricken families from being able to handle such an emotional and confronting decision.
Northam’s PhD research, due for completion in 2013, canvasses families who have declined a request to donate their deceased relative’s organs in the last three years.
Despite it being early days, Northam’s data already outlines a strong link between the decision to say no and the way families are approached in the hospital. Many were initially pro-donation.
Specific guidelines for initially approaching donor families recommended by the Australasian Transplant Coordinators Association are largely unknown.
“It is the doctors themselves doing the requesting and many are not aware of the steps,” she said.
Northam hopes her study will support a growing view that lacking support structures and negative experiences during the initial request process are a major factor in many families’ decision to decline donation.
“In the past we haven’t had suitable people working in hospitals with families,” she said, though she pointed out that public hospitals are gradually starting to address the issue by re-training staff to work specifically with remaining relatives.
“If we don’t understand, it’s hard to fix it.”
The current Australian process relies on an individual or their family expressing the intention to donate organs.
Potential donors can register their wishes on their driver’s licence, though there is no legal requirement to do so.
Confusion arises, however, when hospital staff and relatives have the authority to override directions to donate.
Transplant surgeon, Dr Deborah Varren, said she is often asked to explain who has the final say on the matter.
‘Why are my relatives asked for consent if I have said yes to donation on my drivers licence?’ is a common question, she said.
The difficulty is often in helping families and potential donors understand the many other factors involved with such a sensitive issue. It’s important that they do, however, as a possible donor’s wishes will only be enforced if their relatives verify the deceased’s intentions and medical history and consent to moving and operating on the patient.
Yael Cass, CEO of the Organ and Tissue Authority , agrees that Australia’s historically low donor rate is a direct result of an incohesive national system.
“Holly’s hypothesis is that donor family support is key, and we support that,” she said.
A 150 million dollar, Commonwealth-funded National Reform Agenda aimed at re-focusing a consistent approach to the request process was launched in 2008. A specialist workforce, intensive training and improving public relations, community awareness and acceptance of organ donation were key improvements to be made.
The results, said Cass, are a huge improvement. Australia’s donor acceptance rate has jumped by 51 per cent to 14.5 donors per million, on par with the UK and Germany.
Though the improved rate is still nothing close to Spain’s world record of 34 donors per million, Australia’s recent result is much closer to the European average than previously.
The most effective way to continue increasing donation rates it to ensure an individual’s wishes are translated into family knowledge. It’s already starting to become a common point of domestic discussion, said Cass.
Northam is also positive about the future.
“The money’s in the right place and the heart’s in the right place,” she said. “Now we’ve just got to keep going.”
For more information on organ donation, visit the Australian Organ and Tissue Donation and Transplant Authority’s website, Donate Life.