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.

First Person Consent

As promised, here is more on organ donation.

Australia has had a record first quarter in 2013 thanks to the decision of the 119 families who agreed to donate their loved ones’ organs.  There were 315 recipients.  If this trend continues, we will see the calendar year achieve more than 470 multi organ donors and 1,260 recipients.  This is a far cry from the trend of about 200 multi organ donors for more than 20 years until Australia’s reform package was introduced in 2008/9.

In 2012, there were 354 multi organ donors with 1,052 recipients.

So, we are well on the way to reforming the sector.  The Australian Organ & Tissue Authority has worked tirelessly on the various areas of reform, viz:

  • We now have a national approach so that patients and their families are treated uniformly across jurisdictions.
  • Staff have been provided to undertake the important work that was previously placed on staff in addition to their clinical load.
  • Funding has been provided to support organ retrieval and care of patients who are deceased but who are to be organ donors.
  • Professional awareness and education is ongoing to ensure that staff know the best way to approach grieving families and to ensure they are appropriately cared for.
  • Funding has also been provided for community education and awareness.
  • There are safe, equitable and transparent transplantation processes now in place and the Allocation Protocols are just one example.
  • The eye and tissue sector is being brought under the aegis of the Organ & Tissue Authority to ensure that it operates under the same criteria and guidelines that the organ sector operates.
  • Other programs are also in place such as the paired kidney exchange.

Australia is well on its way.  However, there is more to be done.  We must not rest on our laurels.   I have been concerned about two key issues:

  1. The fact that people who decide to be organ donors and who tell their loved ones can have their decisions overturned.  In my experience of speaking to individuals and community groups, Australians are incensed that their decisions can be overturned.
  2. The Australian Organ Donor Register is seen as an important component by community in its call to action following deciding to become an organ donor.  However, it is not used as a stepping stone in the donation process.

Chris Thomas, CEO of Transplant Australia, and I have developed a paper on First Person Consent.  It is about honouring the decisions of the organ donor and respecting those decisions.

Read our paper here:  Improving Organ Donation.

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What’s Going On?

Blimey I’ve been busy in the last six months, so a bit slack in updating this blog.  I’ve been:

Blogs coming on some of these!  Here’s photos of some of our activities in the last few months:

We welcomed another in the Lambert dynasty.  Rod's Mum, Irene, pictured with baby Alice, Christmas 2013

We welcomed another in the Lambert dynasty. Rod’s Mum, Irene, pictured with baby Alice, Christmas 2013

Rod and I were lucky enough to attend the Australian Open at Rod Laver Arena.  The match was between Bernard Tomic (AUS) and Roger Federer (SUI).  Suffice to say Roger beat Bernard, but the score belied the intensity of the match.

Rod and I were lucky enough to attend the Australian Open at Rod Laver Arena. The match was between Bernard Tomic (AUS) and Roger Federer (SUI). Suffice to say Roger beat Bernard, but the score belied the intensity of the match.

I went to The Lodge on Australia Day 2013 and was lucky enough to have a photo taken with the ACT Chief Minister and the Prime Minister!I went to The Lodge on Australia Day 2013 and was lucky enough to have a photo taken with the ACT Chief Minister and the Prime Minister!

This is about six photos sewn together.  I took the photos from Mt Ainslie - soon to be Marion's View - on Canberra Day, our Centenary, 2013

This is about six photos sewn together. I took the photos from Mt Ainslie – soon to be Marion’s View – on Canberra Day, our Centenary, 2013

Mum, John and Christine received certificates for 50 year residency in Canberra in March 2013.  Pictured with ACT Chief Minister, Ms Katy Gallagher, MLA.  She was incredibly generous with her time with my relatives.

Mum, John and Christine received certificates for 50 year residency in Canberra in March 2013. Pictured with ACT Chief Minister, Ms Katy Gallagher, MLA. She was incredibly generous with her time with my relatives.

I was invited to the Prime Minister's Sydney residence, Kiribilli House, for the launch of DonateLife week by the First Bloke.  I can understand why the Howards wanted to live here!

I was invited to the Prime Minister’s Sydney residence, Kiribilli House, for the launch of DonateLife week by the First Bloke. I can understand why the Howards wanted to live here!

 

Thalia married her beau and became Thalia McGee. Here with our good pal Rosemary, and Tom's pal, Alex.  A beautiful wedding on Canberra's centenary weekend.

Thalia married her beau and became Thalia McGee. Here with our good pal Rosemary, and Tom’s pal, Alex. A beautiful wedding on Canberra’s centenary weekend.

Tom in the glider at Mt Beauty at Easter 2013; Rod running along side.  Fabulous weekend!Tom in the glider at Mt Beauty at Easter 2013; Rod running along side. Fabulous weekend!

Mt Beauty was a stunning choice for Easter 2013.  Rod, Mum, Tom, Natalie and I had a fabulous Easter in luxurious surroundings.

Mt Beauty was a stunning choice for Easter 2013. Rod, Mum, Tom, Natalie and I had a fabulous Easter in luxurious surroundings.

And despite the fact that he's blind, Trapper continues to be a key member of our family!

And despite the fact that he’s blind, Trapper continues to be a key member of our family!

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.

Busy Time

Over the last fortnight I’ve hosted our son’s engagement party, flown to Melbourne, driven to Lorne (Great Ocean Road in the mighty state of Victoria), driven back to Melbourne, flown back to Canberra, flown to Adelaide via Sydney, flown to Melbourne, driven to San Remo (near Phillip Island, Victoria) and driven back to Canberra via an overnight stay in Merimbula on the far south coast of New South Wales.

The engagement party was a joint effort from my soon to be daughter in law’s parents, Bernard and Vicki, as well as Rod and me (yes, me is correct; not I).  Here’s the nicest photo from the day:

Tom, Natalie and the Fabulous Engagement Cake!

The Lorne sojurn was for a family wedding:  Sarah Bell married Ivan Skidmore.  They’re a lovely couple as you can see below.

Ivan & Sarah, 10 Nov 2012

And here’s the beach they were married on:

Lorne Beach, Victoria

And finally, I got the photo of the wedding, despite Robert (the official photographer) being engaged to do good work!  The crying father of the bride just after he’d handed over his daughter:

I went to Adelaide to attend the SA Australian of the Year event.  Dr Gerry O’Callaghan, the inaugural National Medical Director for the Australian Organ and Tissue Authority, was in the final four; a worthy nominee indeed.  He didn’t win, but it was a great achievement to be in the final four.  Here he is with the fabulous Bronwyn:

Mrs Bronwyn and Dr Gerry O’Callaghan

I stayed at Glenelg and had a fabulous couple of days at the beach.  It is a beautiful spot and I did tweet that if I wasn’t in love with Canberra I would probably love Glenelg!

The only problem I had on this trip was that Qantas couldn’t accommodate my oxygen machine so I was trussed into my seat like an animal.  I live in hope that I am able at some stage to speak with Qantas’ medical director.

Customers on oxygen need to be managed better than this.

San Remo was beautiful, although the odd headache was obtained.  Here’s the twins early in the evening!

Anne (young twin) and Helen (old twin)

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.