The Politics of Organ Donation

organ for tx

Organ donation has been a fraught sector in Australia’s health system since records were kept beginning in 1989.  Between 1989 and 2009, very little had changed as far as number of donors, remaining at around 200 donors per annum.  This is a surprising figure when Australians are generous to a fault.  They would give you the shirt off their back if you were stuck in a bush fire, a flood or other disaster.  Yet, surprisingly, this did not translate as far as organ donation was concerned.

In 2009, the Australian Government established the Australian Organ & Tissue Authority.  For the first time, organ donor specialists came together to build a national system.  This was no mean feat.  It involved working across States and Territories and within hospitals, an incredibly difficult job in a federation.

Their work wasn’t easy.  There were more than 70 organisations – government, NGOs and professionals – who were involved in the sector, all claiming to know how to solve the problems.

As an old hospital manager, I knew some of the problems.  Hospitals across Australia were expected to maintain the organs of patients, who were essentially dead, without any resources.  They had to balance that requirement with the need to support those who would survive their trauma.  The Australian Government funded a specific number of hospitals to ensure that beds and staff were provided in intensive care units to enable organ donation to occur.

It can take many hours, if not days, to manage organ donation to fulfil the decisions of the person who has died while managing the expectations of families.  This has been one of the key successes to date in ensuring an increase in organ donor numbers.

And an increase there has been:  Australia has moved from the annual average of around 200 donors to 354 donors in 2012.  In just three years we have increased our numbers significantly.  It is recognised that Australia has started from a low base, but the results have been pleasing, while modest.  There is certainly more to be done, but good groundwork has been undertaken to ensure that this success can expand.

However, one of the 70 groups involved in the sector sees it as their mission to denigrate the hard work of so many clinicians, consumers, and community members generally.

ShareLife has just embarked upon a new campaign to criticise and denigrate the work of the Australian Organ & Tissue Authority.  I am heartily sick of their efforts to belittle the clinicians, the volunteers and ultimately the donors, which is what their campaign is doing.  And this is from someone who needs a lung transplant!  I have been a participant in many meetings with ShareLife and would summarise their claims as follows.

Their first argument is that they drafted the Cabinet submission that established the Australian Organ & Tissue Authority and the Authority is not following the submission or Cabinet decision.  In my more than 30 years of working in the health sector and more than 40 years in the public sector, I have never heard of an NGO developing a Cabinet submission, so I do not believe this claim for one minute.  The Authority is implementing a reform framework with nine components that has been agreed by all the experts as well as the States and Territories.

The second claim is that the Authority is not following the practices that have been established in Spain, recognised as world’s best practice in the sector.  While Spain has a high rate of organ donation, it retrieves organs from extended criteria patients.  That is, the organs are not likely to provide a long life for transplant recipients. Australia’s clinicians have not adopted such a practice to date, preferring to focus on the maxim of “first do no harm”.  To alter this approach is a conversation that must take place amongst clinicians and community in Australia before it is implemented.  In the meantime, Australia has embraced many of Spain’s approaches.  And the results are pleasing.

Third, ShareLife is using a number of advocates who have had transplants to criticise the work of the Authority and concomitantly the Australian Government.  I find their approach to the sector particularly ungracious.  They have received transplants as a result of a selfless decision by a living donor or a donor family, yet they cannot be respectful of that gracious gift.  Some of those involved will need a further donation while others are disgruntled clinicians who want more of a say in the way things are working.

On this front, ShareLife has considerable difficulty in understanding that the hospital system is one that is funded by each State and Territory.  It is not a matter of the Commonwealth (or the Authority) snapping its fingers and expecting the States and Territories to jump to attention.  There is the little issue of the Constitution that stipulates the role of the Commonwealth and the States and Territories.  In addition, a number of the business people involved in ShareLife seem to think that it is as simple as moving a pallet of goods from Perth to Sydney when it comes to organ donation.  Unfortunately, life and death issues are much more complex than this.  There are hours of discussion, grieving, negotiation etc with family.  This is not a business transaction.

Fourth, ShareLife refuses to join with the Australian Organ & Tissue Authority as a Charter signatory in supporting the work of the Authority and contributing ideas and volunteers, unlike the many other organisations in the sector.  There are 51 organisations that have become Charter signatories and 17 organisations who are DonateLife Friends.  All of these organisations work tirelessly throughout the year to promote organ donor awareness.

However, ShareLife’s major activity each quarter is to criticise the work of the Authority, to belittle the efforts of clinicians and volunteers, and ultimately jeopardise the chance of increasing organ donation in Australia.

I for one have had enough of ShareLife’s antics.  They are not an organisation that is sharing life.  They are jeopardising the opportunity for Australians to become donors, the potential for recipients, and the importance of the work of clinicians, community and volunteers to make a real difference.

It’s time that ShareLife went and shared its joy with someone other than those in the organ donor sector.