Australia's woeful rate of transplantation

Putting your heart into it
4/04/2009 12:30:01 AM

If Professor Geoff McCaughan hears another person say more Australians should sign up as organ donors, he might just throw a fit. "It's a furphy and a total distraction," says the director of liver transplantation at Royal Prince Alfred Hospital. Ditto the concept of an "opt out" system, in which organs automatically can be harvested unless their original owner has specifically ordered otherwise.

McCaughan is talking about how to kickstart Australia's woeful rate of transplantation from people who have died, because this is crunch time. An immense $151 million over four years was secured from the Federal Government in 2008 to boost transplants. Now it is starting to be spent: on specialist doctors, reimbursing hospitals for carrying out surgery and a National Transplantation Authority - to develop the first national protocols for an endeavour until now carried out piecemeal by the states.

Another word McCaughan does not want to hear is "improvement". A mere improvement in transplantation rates is a prescription for the continuation of the ever-rising waiting list - particularly for kidneys but for other organs too - tethering thousands of Australians to dialysis machines, unfulfilled lives and the constant threat of dying.

"The deadlock has to be broken through," he says. A 30 per cent improvement might sound impressive; 50 per cent even better. But a figure more like 300 per cent is closer to what McCaughan says is needed to make a dent in the escalating demand for transplantation - as the ageing of the population collides with being overweight, smoking and alcohol to wreak destruction on internal organs. Trebling transplants will demand not gentle changes but the tearing down and remodelling of the sector and its longstanding doldrums.

The number of people who became donors after their death fell to nine per million in 2007 - down from the relative high water mark of about 12 per million in the early 1990s.

That is despite numerous campaigns to get people to tick the donation box on their driver's licence and tell relatives they want to donate organs in the event of their sudden demise. After the violent death of cricketer David Hookes in 2004, the national organ donation register received a spike in new applications; the then federal health minister, Tony Abbott, allowed people to state "consent" rather than merely "intention" to donate. The idea was to override reluctant relatives, though in practice doctors said they would not defy grieving families' wishes.

And yet throughout all this, transplantation rates meandered slowly downhill. In NSW, performance this decade has consistently been worst among the large states - at less than half what South Australia achieves.

Tackling medicine's entrenched hierarchies looms large among the many challenges. Intensive care specialists have trodden a fine line when switching from caring for a person to requesting their organs after death. "Doctors think that's fine," McCaughan says, "and I suspect the public don't." The creation of new federally funded transplantation doctor roles within state hospitals is a vital step.

Under the revised structure, another person would approach families. "There's no ambiguity. They are there to advocate for five potential recipients," McCaughan says. Potential candidates, he says, "can't be mavericks in the sense of walking in and offending people, but they have to be able to be firm, and be patient and persistent ? they're changing practice and culture."

The national authority, whose advisory council met for the first time in Sydney on Thursday, is supposed to empower those individuals. But McCaughan is sceptical. Only a truly independent organisation will be able to drive through the huge disruptions and confrontations needed, he says, while doctors fear the authority is being stage-managed by the federal health department.

"Bureaucrats will not go out there and say, 'What we're delivering here is two to three times the number of transplants in Australia. That's our aim,"' McCaughan says. "They don't want to be held accountable" for such numbers.

Karen Murphy, the authority's chief executive, has kept her head remarkably low since her appointment in December. First rebuffing the Herald's overtures, then agreeing to an interview in late February, Murphy said she was focused on "delivering what the reform agenda sets out to deliver".

But she would not comment, even broadly, on how high the authority should aim. Goals would be "based on world's best practice," she said; precise benchmarks would come later.

"This reform agenda is something that is going to deliver wonderful outcomes over a period of time. We know the majority of Australians support organ donation."

Murphy's most recent experience is as CEO of Queensland-based RemServ, described on its website as "a quality-centric company focused on creating value for our clients, through the provision of salary packaging and related services".

Before that, the trained radiographer and ultrasonographer managed Brisbane's Royal Children's Hospital Foundation. She has also run the Australasian biomedical engineering arm of computer giant Hewlett-Packard.

The experience of "managing a large, national service delivery model," was highly relevant to transforming organ transplantation into a humming national concern, Murphy said. As a career chief executive, "I basically build things ? building up capacity in order to achieve things."

Unlike Murphy, Anne Cahill Lambert AM is prepared to stick her neck out on what would constitute decent progress. "I'd like to think by the end of this year Australia would be a 20 per million [organ donor] country," she says.

Cahill Lambert is one of 15 members of the new authority's advisory council. She used to be the chief executive of the peak groups, Women's Hospitals Australasia and Children's Hospitals Australasia, but then she got sick. In the queue for a lung transplant, she says, "I worry every day whether I'm going to be around to see my son finish his trade, get married."

Organ donation is a gift, and recipients are always grateful. But should they have to be pathetically grateful, cringing in the shadows, or is it time for a recipients' rights movement to emphasise the wastefulness of living in terrible health while viable organs go unused?

"Promoting the misery of waiting is important," Cahill Lambert says. "In Spain when the community wanted change, they marched in the streets."

Spain is the poster child of organ transplantation. About 35 people per million become donors after death. But France, the US and Italy all achieve double Australia's donor rate, and few countries do worse.

If Australia had increased donation since 1989 at the same rate as Spain, 20,000 more people would have had transplants, says Marvin Weinman, the former chief executive of George Weston Foods. Now a pro bono advocate for transplantation through his ShareLife Australia organisation, he is credited by insiders with winning prime minister Kevin Rudd's ear and securing such a staggering financial commitment for a plan that differs - barring an explicit statement of targets - only cosmetically from Weinman's draft.

"We don't have a medical problem. We have a supply chain problem, and I know about supply chains," says Weinman, who believes 90 people in every million should be able to receive a transplant each year, based on a radical increase in donors - each providing three or four organs. "We don't have a registration problem. We have a conversion problem," he says. "Donation is not a pleasant thing to talk about, but access to transplants is." The facts on organ donation

* In February, 1696 Australians were awaiting a transplant - 80 per cent for a kidney.

* Last year 2311 new patients began dialysis for kidney failure.

* Many sick people never go on the transplant waiting list.

* Last year there were 1245 organ transplants, including 889 from deceased donors.

* Deceased donors are typically middle aged and more likely to be male.

* In NSW 57 people became donors last year, compared with 86 in 1989.

* Westmead Hospital has had the largest number of donors: 181 over two decades.

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