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A response to critics of organ and tissue donation reforms

Anne Cahill Lambert writes:

The festive season is always a good time to pause and reflect upon the year’s achievements.  As I’m a person who gets out of bed for three causes each day, my key performance indicator (KPI) assessment is quite easy.  I want:

  1. Free oxygen for all Australians who need it.
  2. Improved organ donor rates in Australia.
  3. Decent coffee and wine beside Canberra’s Lake Burley Griffin.

Dealing with the coffee and wine first, I think world peace would be easier.  At least there is some coffee available, but not in a café or bar away from the vagaries of the weather elements; and not open at the hours of the day that the average consumer would enjoy a latte or a tipple.

Oxygen is getting closer with the National Disability Insurance Scheme.  A bit more work in 2012 will hopefully get this over the line.  As a patient requiring supplementary oxygen 24/7, I spent $30,000 one year on oxygen alone.  This was until I was able to convince my jurisdictional government to revise its oxygen arrangements.  Yet across the border, ten kilometres away, patients are required to pay for their own oxygen.  An explanation of how the system generally works can be found in the Medical Journal of Australia.

But the real achievements have been in the reform agenda for organ and tissue donation.  The government announced a program of reform in 2008, and work commenced to establish an organ and tissue authority in 2009.  At the same time, DonateLife agencies were established in each jurisdiction.  This was a new way of the Commonwealth working with jurisdictions.  A huge cultural shift was required to have clinicians and community working together across borders to achieve improvements.

In the first full year of reform (2010), there was a nice increase in organ donation.  There were 309 multi organ donors that year, up from 247 in 2009.  As at 30 November 2011, there were 310 multi organ donors, thus the expected total for the year will be around 338.  In anyone’s language, this is a good outcome.

When compared with countries that lead in the organ donation sector, a similar pace of reform was achieved.  Admittedly, Australia has started from a lower base.  The data at the International Registry of Organ Donation and Transplantation demonstrates that the process of reform to increase donation rates by ten per million population takes upwards of five years.  For example, Spain’s reform commenced in 1993; it had a donor per million rate (dpm) of  22.6, and in 1999 achieved 33.6.  Its rate at the end of 2010 was 33 dpm.  The USA embarked upon reform in 1994 with a commencing dpm of 20.2, reaching 26.6 in 2007.

Australia’s rate in 2010 was 13.8 dpm with a range from 8.7 in the Northern Territory to 27.9 in the Australian Capital Territory.  The rate for Australia in 2009 was 11.3 dpm.  These are facts and readily available at the Australian Registry (www.anzdata.org.au).

My satisfaction with Australia’s progress is dampened by the unending criticism from one small but loud group of people who relish taking pot shots at the hard work of the DonateLife agencies as well as the Organ & Tissue Authority. 

This group of people, known as ShareLife, claim that their plan, developed for the then Prime Minister, is not being implemented.  That would be because the government’s plan is being implemented! I don’t think I have ever witnessed an NGO’s plan going to Cabinet for endorsement.  They may have been consulted, as were many other individuals, NGOs and government agencies, but to claim the high moral ground of the reform agenda being their plan is twaddle.  Indeed, a large amount of work had already been undertaken by the National Clinical Taskforce and many of the reform suggestions came from their report.

The next complaint is that reform is not happening rapidly enough and Australians are thus dying unnecessarily.  I grieve for the Australians who die while awaiting a transplant.

Equally, however, I celebrate the achievements of the DonateLife agencies and the Authority.  They have been able to significantly improve donor rates over a two year period.  For the last twenty years, Australia has languished at about 200 donors per annum.

ShareLife is a well-meaning group of business people with some clinicians from the transplant sector.  The number of clinicians has dwindled to about three as they have become more involved in DonateLife.  Other clinicians now understand the reform agenda.  The numbers of business people involved have also diminished.

The business leaders claim that improving donor rates in Australia is predominantly a supply chain problem.  Unfortunately, this is a simplistic description of a problem that is much more difficult than moving pallets of widgets from one side of the country to the other.  The health care system is one of the most complex of any systems.  Human life and death is involved.

I am puzzled by the criticism by some of the clinicians, though.  However, as an old hospital manager (I worked in the health system for more than 30 years) I suspect that if they enjoin the work of DonateLife, they will understand the need to work differently which is often a threat to clinicians.  Change is sometimes ghastly, especially when you have been working the same way for many years.

The really sad part of the criticism, though, is that some sections of the media have adopted ShareLife’s stance with gay abandon (see reports from The Australian and The Daily Telegraph).

It is easy to criticise the health system and the government; much more difficult to delve into the devil of the detail.  I think on this occasion, sections of the media are being unfair to those who strive to save lives through organ donation and transplantation while at the same time dealing with the tragedy of unexpected death.

Remember, for every life saved, there has been the tragedy of at least one death.

So, when the final numbers come out for this calendar year, please have a good look at them and don’t assume that those criticising are right.  Try and think about how hard this is.

Think about the likely 338 families who agreed to their loved ones being organ and tissue donors.  I’ll say a thank you to them and to the staff who work with the families to ensure that their loved ones’ wishes are respected.

Anne Cahill Lambert AM is a member of the Advisory Council of the Organ & Tissue Authority but the views expressed here are her own.  She was also President of Gift of Life at the time of the reform agenda being announced and had advocated for reform and national leadership.  Finally, she has fibrosing alveolitis and has been on a waiting list for a lung transplant.  At the moment she is stable and is not currently listed.

 

 


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Comments 1

  1. sazirvine says:

    A response to the comments made here has been published – https://croakey.org/sharelife-responds-organ-donation-rates-should-be-much-higher/

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