Julia Irwin (Fowler, Australian Labor Party) Share this | Hansard source

I am pleased to speak on the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. This bill will establish an authority which will set about creating for the first time a centralised, Australia-wide approach to facilitate improved access and better outcomes for the thousands of Australians who are in need of an organ or tissue transplant. Regrettably, the demand for organs and tissue far outstrips the supply. Less than one per cent of all people who die in hospital each year are suitable for organ donation.

While many of us support organ donation—and, I would say, the vast majority of Australians do—the fact is that in 2007 only one-third of the demand for transplantation was met. The statistics are the more sobering because there were only 198 organ donors, resulting in 657 transplants. We must ask ourselves why the number of donors is so low when compared to the size of the sentiment expressed by so many in support of organ donation. I doubt that there would be many who would decline to support the idea of organ and tissue donation. Some will of course make a decision to refuse donation based upon religious grounds, and for some it is an emotional argument as they cling to false hope in a denial that they will soon lose the person they love.

The real difficulty lies in the fact that the decision to donate must be made at the most difficult of times and in the most difficult of circumstances: a time when a loved one is dying. The last thing that any person wants to hear from the doctor is that a loved one is going to die. Let us face it: this point, the moment of impending death, is when a decision needs to be made as to the possibility of organ donation, often after the person has made the decision to turn off the machine which is keeping that loved one alive. Of course, the next of kin are dealing with all sorts of associated emotions at this time: shock, anger, loss and fear, amongst others. On top of all that, they are being asked to decide about a loved one’s organs. They do not want to accept the death. They are not ready to accept the loss. They do not want to face the prospect of life without that partner or child or parent or sibling. They simply do not want that person to die. In the circumstances where that death is unexpected, the emotions are more intense and the death more difficult to accept.

The rationale becomes that a donation of organs would really be an acceptance of the death, an acceptance of the loss—finality. Even when the doctors have said there is no hope, we think that maybe, just maybe, there will be a miracle—maybe the doctors are wrong; maybe there has been a mistake. It is a decision which will bring about a finality that the next of kin are not yet ready to accept. It is at this difficult time that we ask someone to make a clear and rational decision, at a time when really the next of kin are emotional and perhaps at their most irrational. It is no wonder that many refuse even when the potential donor had already expressed a desire to donate organs in the event of their death—even when, under normal circumstances, the potential donor’s family would express support for organ donation.

It is the same medical staff who have been treating the patient who invariably must approach the family. It is difficult for medical staff to treat a patient, then advise the next of kin that there is no hope of recovery, that death is imminent, and almost in the one breath ask for permission to harvest organs for transplant.

Clearly the approach that has been taken is flawed and support for donor families has been especially lacking. This bill will provide a new approach, which is necessary. Funds will be made available for dedicated organ donation specialist doctors and other staff in hospitals. New funding will be made available to enhance staffing levels, beds and the infrastructure necessary for organ donation. Funding will also be made available for support services for families of deceased donors.

Importantly, funding will be made available to continue national public education and awareness, which is extremely important if we are to improve on the number of donations being made. It is only through education that we can create and, if you like, ingrain into our psyche the acceptance of organ donation as being simply another part of this process we call death. We must arrive at a point where we are comfortable with the notion of organ donation even when we are not comfortable with the thought of death. If one is to die, then surely to give the gift of life would be a fitting legacy of the donor.

We are all no doubt aware of the recent death of a young Australian, Doujon Zammit, in Greece—a young man from my electorate of Fowler. It takes great courage to face the loss of a loved one, especially in the circumstances in which Doujon was suddenly taken from his family. He was tragically killed so far from his beloved homeland. The decision by his family to donate his organs to people on waiting lists in Greece was both courageous and inspiring. They are an example to us all, and we must all aspire to such clarity of thought and generosity when we face circumstances requiring a similar decision.

The Zammit family found hope, when there was no hope for Doujon, in the belief that this would be a lasting legacy for Doujon, a living testimonial which would mean that his death, though tragic, would not have been in vain. From all the media reports we have seen, the donation of Doujon’s organs has been a gift of life to several people. Media reports also indicate that this very public act has resulted in an increase in organ donation in Greece—a welcome fact, given that the average waiting time for a transplant in that country is six years, with some 900 people on waiting lists.

There are almost 2,000 people in Australia on organ transplant waiting lists at any given time. The sobering fact is that some of them will die waiting and many will endure poor quality of life as a result of poor health while waiting. This will have an enormous impact on their families: an inability to work or work effectively, a reduction in family income and no foreseeable improvement until a donor becomes available. Add to this the enormous costs associated with treatment and the burden is far too great for many to bear. The cost also to government for providing the ongoing care is great and can only be reduced as a result of a successful transplant that will return quality of life to the patient and enable them to once more become active and productive members of their family and the community in which they live.

Since July 2005 the Australian Organ Donor Register has been a register of consent, allowing donors to register their legal decision to become organ and tissue donors. It is the only national register for organ and tissue donation. A donor’s verifiable consent can be accessed at all times by authorised personnel, which allows for greater informed communication with the donor’s family. We must encourage and educate people to actively discuss and consider such a momentous decision to become an organ donor with family and loved ones well before illness or tragedy strikes. We must ensure that support services are in place to assist the donor in reaching this decision, to assist and support the donor family and to assist the medical personnel involved in the treatment of the donor as well as those medical personnel advising on and seeking organ donation. We must ensure that the entire process is properly managed so that the donor family can take comfort in the generosity of giving precious life. This bill will do just that. I applaud the Rudd Labor government on this measure and commend the bill to the House.

See this speech in context