In the article below, Sara Irvine from ShareLife Australia responds to a Croakey article about organ transplant policy by Anne Cahill Lambert that was published last month.

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We should be doing better on organ donation rates

Sara Irvine writes:

The Parliamentary Secretary for Health and Ageing, Catherine King recently announced: “In 2011, 1001 Australians and their families benefited from the legacy of 337 of their fellow Australians who last year became organ donors.”

It’s an improvement, but this country should be doing so much better.

We should not be celebrating an “Australian record”, so much as aiming to emulate the record of more successful countries overseas.

The world leader, Spain, last year beat its own record raising the bar to over 35 donors per million of population. Australia is at 14.9.

At Spain’s rates, Australia last year would have seen 783 donors, not 337.

Recently Anne Cahill Lambert, a member of the leadership group of the national organ and tissue authority (OTA) established to oversee the reform, posted an opinion piece on this website expressing frustration that some media was critical of the current rate of improvement: “The really sad part… is that some sections of the media have adopted ShareLife’s stance with gay abandon.”

ShareLife Australia monitors the official organ donor data and presents it in the global context. The media makes its own assessments.

Ms Lambert was quoted in 2009 saying, “I’d like to think by the end of this year Australia would be a 20 per million [organ donor] country.”  Two years later the rate is nowhere near it at 14.9. and the same person has leveled harsh criticism at those who are not willing to accept slow growth.

The improvement announced by Ms King was described by the author as good “in anyone’s language”. Just not in hers from 2009.

ShareLife is a community reform group of leading surgeons and physicians, donor families and recipients and others in a variety of professions. All are committed to ensuring organ donation goes up and that Australia moves into the top tier of organ donor and recipient countries. Each and every person is involved because of a strong sense of community and social justice and recognition of a great opportunity to realise massive health reform in this country.

The ShareLife community celebrates every life that is saved or improved.

If the opportunity to donate your organs arises, your family is likely to be in numb shock. It’s a decision that always involves family or next of kin. This is not because the wishes of the individual are overlooked, but because in most cases that person’s family is gripped by grief and holding on to hope, and they cannot be overlooked.

It’s about the human condition, about life and death, and loss. This article from The Guardian last year gives a comprehensive overview of how the Spanish are getting it right. As the article notes: “It’s not about donor cards, registers or “presumed consent” but about the teams of transplant coordinators in every hospital.” Many other countries are following and the results provide a compelling case.

Acknowledging the organ donation wishes of a loved one means also acknowledging they are dead. In our hospital systems it is not just the patient who needs the care of dedicated professionals, but the families too, albeit from a medical professional in a different role.

There are formalities like a patient’s recent health and family history that are important for a transplant team to know, but it is also important for families to ask questions, to know more, to understand the process. In the midst of sudden grief, support can be provided in the hospital to enable a donation to be made without pressure and without fear, but with the knowledge that several groups of friends and family fearing the worst, on the cusp of grief themselves will be forever grateful that their loved ones were saved after receiving a transplanted organ.

The improvement here since 1989 has actually been small. A slump in donation in the interim saw Australian rates drop. As a result authorities herald marginal increases compared to a low base as major gains.  To put it in perspective, the 2011 rate is just 0.9 per cent higher than the rate 22 years ago, in 1989.

Back in 2008, ShareLife played an integral role in the development of Australia’s national reform package – as noted in the federal government’s media release announcing the major reform intended “to establish Australia as a world leader in organ donation.”

The “gold standard” system focuses on national coordination and hospital-based facilitation of organ donation with assistance given to the family of the deceased by specifically trained and dedicated staff. This is key to growing donation rates.

The problem is that the reform package has not been fully implemented in Australia.

It can be, and it must happen in a relatively short time frame.

In 2011 Minister King said that current rates of improvement might see Australia’s donors per million people go into the 20s – but possibly not for a whole decade.

Quite simply, ShareLife believes that Australia can be a world-leading country, and does not accept targets that are reviewed and decreased to match performance.

It’s not just Spain. Australia is ranked 24th in the world. Portugal, Norway, France, Austria, the USA and even countries like Estonia and Uruguay are well ahead of us.

The $151 million national reform program is costing over $40 million each year, many times more than any previous reform in this area. Last year saw an additional 28 donors.

It’s vital there be independent review and analysis of what it has and hasn’t achieved.

ShareLife does not accept that one of the best health systems in the world cannot deliver world-class results in organ donation for transplantation.

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