A Gift For Life
The Age
Tuesday August 31, 1993
Australia's first organ donor register is being set up in Victoria to arrest the state's poor donation record. But families will still have the final say.
MRS GEORGINA Mendola is a member of a club even more exclusive than the likes of the Melbourne or Masonic. Hers is the live-organ donors club and the grateful beneficiary of her association is her son, Russell. Unlike most organ donors, Mrs Mendola is alive to tell of her generosity. She, and only a handful of kidney and liver donors, make up a particularly elite group.
When Russell, 27, who was born with one kidney that had deteriorated, faced the prospect of a long wait on dialysis for a desperately needed replacement, his mother came forward as the most compatible donor. In July, one of her kidneys was transplanted into her son.
``There was no hesitation at all. When you have got an opportunity like that you do not give it a second thought. It was great to be able to do it, just to see his face _ it is so chubby and healthy," Mrs Mendola says.
After the success of the Austin Hospital operation, Russell, an Australian Paper Mills paper maker, is an avowed fan of organ donation and wants to promote it. Without the operation, Russell would have died before the end of the year.
But he was lucky to have such a compatibility with his mother's kidney. More than 3000 Australians are on a waiting list for organ donations and 20 per cent of them will die before a surgeon's beeper goes off to indicate the availability of a suitable donor organ.
Australia has one of the lowest rates of organ donation in the developed world, with 12.4 donors per million population each year. In Victoria, the rate is even lower at nine per million (last year 47 Victorians donated organs). This compares poorly to Britain's 15 per million, Canada's 17 and 20 per million in the US.
From a cramped top-floor office, Mrs Bette Martyn is hard at work setting up an ambitious project that could ultimately save many fading lives. Mrs Martyn, the Royal Melbourne Hospital's transplant coordinator, receives more than 50 calls a week from potential organ donors who want to formally register.
It is this contact with the public that has prompted Mrs Martyn to set up Australia's first central organ donation data bank in Victoria in a bid to redress the state's poor international donor rating.
``When a patient has died, if the family does not know the wishes of that person _ and in most instances they don't _ it is terribly difficult for them to make a decision to give the organs.
``If they register their intention by an organ donor registry then the family has got some formal documentation or view of what that person wanted. They are then only verbalising what the patient wished.
Ad hoc efforts to have Victorians register their intentions on licences and donor cards appear to have had little effect on the dwindling supply of organs available for transplantation.
Ironically, Victoria's renowned road safety campaign is partly responsible. It is no coincidence that the state's low rate of organ donation has tracked its falling road toll, which has given Victoria the lowest road trauma incidence in the Western world.
But Mrs Martyn says insufficient community awareness has also led to a lack of suitable donors. The post-death prospects for a family member's organs is still not something readily discussed at the dinner table.
``We make decisions about what sort of funeral we want, what we want to put in our wills. All those sort of decisions we make every day.
The decision about being an organ donor should be one of those," she says.
Australia adopts an ``opt-in" system to organ donation, in which no one is regarded as an organ donor unless they have specifically indicated a wish to be one.
Presently in Victoria, the consent of the next-of-kin is required before an organ can be taken from a brain-dead relative's body. In their distraught state, a family is often inclined to reject the request because the relative had never formally registered as an organ donor.
The organ donor register, which is likely to be up and running by January, will give hospitals computerised access to a central databank of names of people who have consented to donate their organs after death.
It will work something like Victoria's car registration system. Once potential donors fill in a card and send it to the registry, they will receive a certificate confirming their status. The cards will be readily available through community organisations and hospitals.
``An organ donor registry will not take the decision away from the family. The family will still be the decision-makers and their decision still will be final, but they are unlikely to go against your wishes.
``At the moment the only way they can document it is to be put into the will, which of course is quite useless when the will may not be found or read for two weeks after the death," Mrs Martyn says.
But Australia is not the only country to be faced with a shortage. In the United Sates, ethical questions have been raised about some states' innovative attempts to get more organs.
In the US, brain-dead patients have traditionally qualified for donation, but at some hospitals doctors are turning to people whose hearts have stopped beating _ usually those being kept alive on respirators who ask for it to be turned off.
A recent report in the `New York Times' about the Illinois Regional Organ Bank told how doctors inject preserving fluid into a corpse's abdomen on arrival at the emergency ward before consulting the family.
Mr Nicholas Tonti-Filippini, a bioethics consultant, says such dubious attempts to retrieve organs sabotage the trust between doctor and family that is essential for a successful transplant program. ``The whole thing is based on trust _ trusting that the doctor will respect a family's wishes. If it is breached, then people will lack confidence in the donor system and there will be less likelihood of them donating," he says.
Mrs Martyn says no country in the world provides an ideal organ donor model to boost donation rates. But, if raw statistics are anything to go by, Belgium might be the answer. There, as in several other European countries, organs are considered state property after death unless the patient has specifically documented a wish not to be a donor.
Recent calls for the introduction of such an ``opt-out" system in Australia have prompted considerable debate. Mrs Martyn is not keen on the the Belgian approach. ``I do not think that we should be taking the gifting decisions away from Australians when they are so logged-in to giving.
The introduction of an organ donor registry will complement the work of the successful Bone Marrow Registry and the Victorian Institute of Forensic Pathology's Donor Tissue Bank, which holds a stock of heart valves, skin, bone and corneas.
Mrs Martyn hopes the Victorian database will be expanded nationally, but much will depend on funding. Setting up the registry is expected to cost about $200,000, raised from the private sector. The cash- strapped State Government is not expected to provide any money.
``Certainly from a resources and monetary point of view we cannot afford not to be transplanting. Other means are much more expensive, so transplantation is by far the most cost-effective method.
FOR further information on organ donation, contact Victorian transplant coordinators on (03) 3470408 24 hours a day.
ORGAN WAITING LIST WAITING TIMES (As at 31/3/92)
Kidney 1,618 1-3 years
Heart 79 6-7 months
Heart/Lung 44 1-2 years
Lung 22 6-9 months
Liver 23 6-12 months
Pancreas 7 9 months
Cornea 1,365 2-3 years
Bone marrow 154 7-8 months
Source: National Kidney Matching Service, Australian Transplant Co-
ordinators.
© 1993 The Age