Organ donor reality falling short of hopes
More Australians than ever are registered to donate organs, but the numbers aren’t translating to more transplants, writes Lynnette Hoffman
TO businessman Marvin Weinman, it is simple maths that doesn’t add up: nearly 5.5 million Australians are registered to donate their organs and that figure is climbing. So how is it that the overall number of donors per million Australians is lower now than it was 20 years ago — while other countries, such as Spain and the US, have doubled numbers?
Just over two years ago Weinman co-founded the lobby group Sharelife in an effort to rectify that disparity. Sharelife has since hired companies such as Bain and Company and The Leading Edge to research the world’s best practice in organ donation and figure out why Australia isn’t getting the same results as overseas.
As of October this year 1855 Australians were on waiting lists for organ transplants. But in 2006 just 739 transplants were performed from a total of 202 donors.
One of those waiting for a transplant is 60-year-old Anthony Parrelli, a Vietnam veteran who four years ago was diagnosed with pulmonary fibrosis, a lung disease often found in miners or people exposed to asbestos. Parrelli now depends on an oxygen machine to keep him alive. It’s meant a huge loss of freedom — he becomes short of breath just from speaking, and activities such as walking up a flight of steps or cutting the grass are no longer possible for him.
He’s had to quit his job as a fruit and vegetable wholesaler and he’s no longer able to help with local soccer training. The limitations have left Parrelli bordering on depression. He sees a transplant as an opportunity to restore some of the life he used to have.
‘‘ I don’t expect to go run a marathon, but I’d like to just be able to go for a walk in the evening with my wife,’’ he says.
But waiting times for transplants can be lengthy, and the longer you wait the worse you are likely to fare, says associate professor Allan Glanville, director of lung transplantation at Sydney’s St Vincent’s Hospital.
‘‘ Mortality rates on transplant waiting lists are 15 to 20 per cent, so the lack of donors means that if you have a rapidly progressing disease you may not survive to obtain a transplant,’’ Glanville says. ‘‘ You are also at higher risk of problems such as nutritional deficiencies and hospitalbased infections.’’
The bulk of those on the waiting list, more than 1395 people, are waiting for kidneys. A report by the NSW transplant advisory committee last year found that the average person on dialysis waits more than seven years for a kidney transplant from a deceased donor. People on dialysis have a higher risk of high blood pressure, hardening of the arteries, heart and bone disease and other problems, so survival rates are better for those who get transplants.
Bearing all that in mind, groups such as Australians Donate, the peak body for organ and tissue donation, the Red Cross and others have launched community awareness campaigns urging people to register to donate, and discuss their decision with their family.
The message to register is getting through, but Weinman questions whether that is enough.
‘‘ People think they tick the box and everything just happens automatically, but that’s not the case,’’ Weinman says. ‘‘ Almost 1 million registrations have been added to the registers between 2002 and 2006, and yet in 2006 we had four fewer donors than in 2002.’’
Last year Australia had 9.8 donors for every million people — one of the lowest rates in the developed world, according to Australians Donate. Spain leads the world with a rate of 35.1 donors per million, while France has a rate of 22.2 dpm, and the US has 21.4.
While these countries have a greater number than in Australia of deaths due to trauma such as road accidents — which create the circumstances that can lead to donated organs becoming available — it isn’t anywhere near enough to explain the gap.
Audits of hospitals in several states, including
Victorian hospitals published in the Medical Journal of Australia last year, have found two key problems: not all potential donors are being identified, so a significant number of families don’t even get asked at all; and refusal rates of families are higher than in other countries.
Given that only about 1 per cent of all people die in a way that will allow for donation, turning those numbers around is particularly important.
The Victorian audit found that out of 280 potential organ donors, only 220 requests for organ donation had been made. Consent rates ranged from 53 per cent to 65 per cent, depending on how broad the definition of organ donor was. In Spain, on the other hand, consent rate is reportedly around 85 per cent ( MJA 2006;185(5):250-254).
Legislation differs from country to country. Spain operates under what is known as a ‘‘ soft opt-out’’ consent system: the law assumes you agree to donate unless you say otherwise, but families are still consulted and given the opportunity to refuse, even if the person has never stated their opposition.
How significant those sorts of legislative policies are to Spain’s higher rates is uncertain. A Tasmanian parliamentary committee is currently reviewing opt-out laws, but most experts and advocates pushing for improved donor rates are focusing on other factors, such as how families are approached.
The Victorian study found that families were more likely to refuse consent when they were approached by junior doctors, rather than specialists. Consent rates rise when the doctor talking to the family is knowledgeable about and supportive of organ donation.
Other countries such as Spain have separate specifically trained specialists to discuss donation with the families. But in Australia the same doctor responsible for treating the patient may be given the task of talking to the distraught family. Many have received little or no training and have minimal experience in discussing such issues with families.
Of course there are horror stories, such as families being approached before they even get to the bedside, Weinman says. Families might not have a solid understanding of what it means to be brain-dead, either, he says — a confronting concept if their loved one still appears to be alive.
The audits also show big differences in practices and outcomes from hospital to hospital, and from state to state.
In its campaign for change, Sharelife has called for measures such as a national transplant centre and specialist donor co-ordinating doctors. It’s not alone. Jeremy Chapman, chairman of the National Clinical Taskforce for Organ and Tissue Donation, says the taskforce will be making some similar recommendations in its report to the health ministers due out in the first half of next year.
The report will make a case for a more centralised national approach and focused public awareness campaign, among other recommendations yet to be announced.
Proof of what’s possible is already becoming apparent. About 18 months ago 22 hospitals across the country joined forces to form the National Organ Donor Collaborative, a state and federally funded program modelled after a similar program in America that sustained a 20 per cent increase in donors over 30 months.
The collaborative uses best-practice methods such as having ‘‘ designated requestors’’ to speak with families, and training staff to learn the clinical triggers that signify a patient might be heading toward brain death, so fewer potential donors are overlooked. During the first 12 months of the collaborative 60 per cent of the total number of organ donors came from hospitals in the collaborative, and the number of donors in those hospitals increased by more than 32 per cent from the previous year. Six more hospitals have since joined the collaborative.
‘‘ There’s no doubt we can improve, but there’s not one single thing that will fix everything. It will take lots of things,’’ Chapman says. For more information about organ and tissue donation call 1800 777 203 or
Incapacitated: Anthony Parrelli, awaiting a lung transplant, longs for mobility