Donors urged to join register, make wishes known to family
ANGUS Taylor presses his face against the sliding glass doors. His blonde hair is plastered to his wet head, his red t-shirt is soaked through and muddy streaks run from his knobbly knees to his Spiderman gumboots as he jumps around impatiently.
"Mum, mum," he calls through a toothy grin, "I'm ready to come in now, it's raining out here you know."
The promise of morning tea urges him to quickly exchange the wet clothes for warm, although his enthusiasm is tempered when a cursory glance at the table shows his path to the chocolate biscuits is blocked by watermelon and a vegemite sandwich.
He talks animatedly flitting easily from one topic to another in that carefree manner of four-year-olds. Did I want to see his worm collection? Did I know how to build a Lego car? Was I coming to his birthday party… his best friend Connor was coming and there was going to be cake - chocolate of course with lots of icing and maybe some sprinkles but not pink.
Every so often Tracey Taylor would put down her coffee cup and implore her son to slow down but her smile as she looked at her precious boy was indulgent.
Just two years ago Angus, who was born with biliary atresia, was an all too frequent guest of the Royal Children's Hospital in Brisbane. A string of operations had bought him time but what he needed was a new liver.
The Taylors' days were a frantic rollercoaster of trips to the hospital and visits to specialists. Some days were easier than others, every one of them was a luxury. There was some relief when Angus was moved onto the priority donor list but for nine months they waited with the mobile phone always close at hand and never straying more than two hours from home.
The call came late one Sunday after the family had already gone to bed. "The doctors wasted no time in prepping Angus for surgery," said Tracey. "We were so happy and so scared and also so sad for the family that was saying goodbye to someone they loved.
"I wondered whether they were in the same hospital and how cruel and how amazing it was that their sadness could mean an end to ours. How do you even begin to thank someone for that?"
There are more than 1600 people on the transplant list in Australia waiting for that phone to ring, waiting for that second chance. Such is the high rate of success of transplants in this country that should a donor eventuate, the recipient is likely to live a long and fruitful life.
The challenge, however, remains in receiving an organ in the first place because Australia despite its skilled medical practitioners and altruistic identity continues to lag behind. For almost twenty years our organ donation rates have been amongst the lowest in the developed world and despite recent increases we remain in the bottom half of the table. Last year the rate of deceased donation in Australia was 15.6 donors per million population, an increase of 5% on 2011 but still well below world-leaders Spain at 35.3dpmp and Croatia on 33.6dpmp.
At present there are 1.6 million registered donors in Australia, 336,000 of them in Queensland of whom two thirds are female. But very rarely does a willingness to donate your organs actually come to fruition.
The tricky thing about organs (heart, lungs, liver, kidneys, pancreas and intestines) is that their cells need a constant flow of blood to continue functioning. That's why organ donation is linked with brain death because it is the only instance when despite confirmed death, medical staff can keep the organs functioning until they can, with consent, be recovered within minutes of the heart stopping. Tissue donation (corneas, heart valves and vessels, tendons, skin, bone and pancreatic islets) are slightly different in that they can be donated up to 24 hours after death.
Some experts say that perhaps one of the reasons for Australia's low donor rate is because our youthful population, effective road safety campaigns and high levels of public safety combine to make the deaths that usually result in organ donation quite rare.
Others say that's hogwash pointing the finger instead at the "family consent" clause which gives the family the final say even if the patient was a registered donor. Of the 710 families approached in intensive care units last year to provide consent for donation, 300 refused. Those that agreed changed the lives of more than a 1000 sick people. Of course a percentage of those refusals were registered donors which means that the family veto not only deprived some patients of life-saving surgery but also in a way undermined the autonomy of the registered donor.
That is why it is important says Catherine King, the Parliamentary Secretary for Health and Aging, that Australians not only add their names to the donor register but also take the time to discuss their wishes with their families.
"Around 40% of families say no to organ donation in part because they did not know the donation wishes of the deceased," she said.
"I appeal to all Australian families to have the donation conversation - one organ and tissue donor can transform the lives of ten or more people. Families that know the wishes of the deceased are much more likely to uphold their loved one's donation decision in the event they ever find themselves in that situation."
There are calls in some circles for Australia to adopt the "opt out" system favoured in top donor countries like Spain, Belgium France, Norway and Italy where everyone is considered a donor unless they specify otherwise. Yet even in these countries families have a right to override a patient's wishes but rarely do. Perhaps they have better support for and understanding of organ donation but we should certainly be asking why in Spain, for example, 85% of families consent to organ donation compared to just 58% in Australia.
Of course here there are other factors to consider like the distance patients in rural Australia have to travel to get to hospitals equipped for the removal of organs, a patient referral and management system that could be better organised, while studies published in the Australian Health Review also point to the lack of resources and the poor understanding of brain death among emergency clinicians.
The Organ and Tissue Authority which was established in 2009 as part of the Federal Government's $151m funding boost to improve organ donation has to also find a way to convince a sceptical Aboriginal and Torres Strait Islander population to play an active part.
A cluster of chronic illness such as diabetes, stroke, hypertension, heart and kidney disease leave these communities with a greater need for transplants, almost eight times as much, but cultural beliefs, a mistrust of the health system and a general lack of knowledge on the subject has led to an under representation of donors and recipients.
An aging population and a general increase in diabetes and chronic disease means our overall need for organ transplants will only increase.
The Organ and Tissue Authority is doing its part by establishing a relationship with states, territories, clinicians and the community and leading a nationally co-ordinated approach to organ and tissue donation that includes a comprehensive awareness program, better training for those doctors and nurses who approach families in intensive care units and an extensive and timeous patient register.
Religious and cultural leaders from the Buddhist, Catholic, Greek Orthodox, Hindu, Jewish and Islamic faiths have also signed statement of support acknowledging organ and tissue donation as an act of compassion and generosity.
But hundreds of families like the Taylors will not have a chance at a better life if Australians fail to put their names down on the donor register and let their wishes be known. It is the only way of turning tragedy into hope.
Factbox - How you can help
Register your decision to become an organ and tissue donor:
- at any Medicare branch
- at the Australian Organ Donor Register website www.humanservices.gov.au
- by calling Medicare Australia on 1800 777 203.
Recording your decision on the Australian Organ Donor Register is voluntary and you have complete choice over which organs and/or tissue you wish to donate. You must be 16 years or older to register. Family consent is always needed before donation can go ahead, so remember to discuss your decision with your family and those close to you.