The Next Big Thing In Organ Donation

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Very pleased to have published an article in Croakey today about First Person Consent.  Thanks to Melissa Sweet and Marie McInerney for accepting this article for publication.

As previously foreshadowed, this is really one of the next major initiatives that needs to be pursued so as to ensure that decisions about organ donation are respected, honoured and, importantly, upheld.

This is not an opt-out system.  Rather, it is a system that allows families to endorse their loved one’s decision about organ donation.  And it uses our very important call to action, the Australian Organ Donation Register.

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The Politics of Organ Donation

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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.

Update on Organ Donation to 31 October 2012

The data to 31 October 2012 are out, showing that 285 generous families agreed to donate their loved ones’ organs this year.  The projection to 31 December is 342; disappointingly a small increase on 2011’s total of 337.  But it is still upwards, rather than downwards.

The big change will be in NSW, a jurisdiction that has traditionally lagged behind the rest of Australia.  This is because it has used the driver’s licence register as one of the tools to indicate consent or no consent.  We know that renewal or application for driving licence has absolutely nothing to do with what people want when they die, so this is a good move on the part of the NSW Health Minister.

I fully expect a dramatic increase in NSW numbers in the coming month so that more Australians’ lives can be saved or improved.

You can get the traditional data at the relevant website, but here’s my calculations of rolling averages so that you can see what’s going on.

Oh, well done to Tasmania, reaching the highest ever number of organ donors.  The Northern Territory has also outdone itself as has my own jurisdiction of the ACT.

AUSTRALIA’S ORGAN DONATION IN SEPTEMBER 2012

The data has been released up to September 2012 on organ donation for Australia, by jurisdiction. There were 256 generous families up to 30 September who donated their loved ones’ organs, resulting in a saving or improvement of life for 759 people. A truly phenomenal decision.

Given the backdrop of health reform, it is difficult to see why a couple of jurisdictions have not maintained their donor rates over a five year period. My graph (attached as a pdf but included below as a picture) shows that New South Wales, Victoria and South Australia are lagging behind their best performances. Bear in mind that predominantly, those best performances were when the program of reform was just commencing. I’m not sure what’s happening there.

I have surmised previously that these jurisdictions are managing their health budget by reducing the number of organ donors.  All jurisdictions signed onto the reform of the organ donor sector.  The agreement included that the Commonwealth would pay for increase in organ donation, while jurisdictions would pay for what is called downstream issues, viz., the increase in transplants.

There was a large barney about this in September 2011 when the Alfred Hospital in Melbourne suspended its lung transplant program.  There were a range of reasons put forward for this suspension and I was amongst many in the community who loudly protested this.  As I said at the time, if there was an intention to increase organ donation, surely the bean counters in the Victorian Department of Human Services and the Alfred understood there would be an increase in transplantation.  My big concern was that the Alfred is not just for patients in Victoria, but for others across Australia.  Patients who were on that waiting list or hoping to get onto the list were devastated.  They had no hope.  Without hope there is no life.

Eventually, the Victorian Ombudsman conducted an inquiry into this matter and his report was tabled in the Parliament this week.  It shows that:

  • two patients died during the suspension of the program;
  • one set of lungs were declined;
  • some units work outside agreed protocols.

While the clinicians stated that they did not consider that anyone was desperately ill at that time, nevertheless from the bleachers I have concerns about the people who may have benefited from a transplant, their families and the concomitant ability to list new people.

Based on the data to 30 September 2012, we can expect that around 342 families will make the ultimate decision to donate their loved ones’ organs by 31 December 2012; a minor increase on 337 in 2011.

ORGAN DONATION DATA

The data to 31 August 2012 are out showing that 31 generous families agreed to donate their loved ones organs during August.  This brings the total number of donors this year to 223.

The data is published by the Australia & New Zealand Organ Donation Registry and shows that New South Wales, Victoria and South Australia have lower numbers than to 31 August in previous years.  It is the smaller jurisdictions of Queensland, Western Australia, Tasmania, Australian Capital Territory and the Northern Territory who are performing above average.

Based on current trends, we can expect a total number of donors to the end of 2012 of around 335 multi organ donors, which is about the same as 2011.

We do expect significant increases in New South Wales once the drivers’s licence is removed from the set of documents that are reviewed before asking families about organ donation.  The driver’s licence was a poor indicator of organ donor status as there were many inaccuracies.  Hopefully, the decommissioning of the system will result in changes.

Here’s a graph I’ve prepared that shows trends over the past five years:

Organ donation to 31 August 2008-2012

The Friends of DonateLife are running and walking in the Canberra Times Fun Run on Sunday, 9 September, raising awareness for organ donation.  Good luck to them all and thanks for all they are doing!