Radio Current Affairs Documentary: Organ Transplants
ELIZABETH JACKSON: It's now more than three years since the Federal Government announced its commitment to boost Australia's organ donation level. More than $150 million has been ploughed into a new authority to make it happen. But there doesn't appear to be much to show for it.
Last year in Australia, just 300 people became organ donors and the statistics haven't really changed over the past 20 years.
Bronwyn Herbert has this report.
KIMBERLEY LIVINGSTONE: Prior to transplant I knew every single breath, every single crackle, every little noise that my lungs made and how hard it was to breathe, gasping like huh, huh, huh (gasping).
I'm Kimberley Livingstone. I had a double lung transplant two and a half years ago and I'm 30 years of age. Post transplant, like, I was lying flat on the bed, which I couldn't do for months before. Breathing, talking and just not even knowing,
BRONWYN HERBERT: Kimberley Livingstone is unusual. She's one of only a few hundred Australians each year who receive a donated organ. Right now, at least 1700 people are waiting for a kidney transplant to save their life, and there's hundreds more hoping for a second chance, looking for a heart, an eye, a liver or lung.
KIMBERLEY LIVINGSTONE: By the time I got transplanted I was down to 16 per cent lung function. I was on oxygen and in a wheel chair and for a 28-year-old girl that's not very appealing.
BRONWYN HERBERT: Transplants are costly and complex. Deborah Verran leads a transplant surgical team servicing New South Wales and the Australian Capital Territory.
DEBORAH VERRAN: You get the call late at night and you basically have to meet a team here at the hospital, then go to the airport where you get on a chartered aircraft and fly to a small hospital in the middle of the night and set up to do an organ donor retrieval process.
BRONWYN HERBERT: Organs are flushed with a preservation solution, then packaged and placed in an esky chilled to exactly four degrees Celsius.
DEBORAH VERRAN: The heart really has only four hours on ice. The lungs can last six to eight hours. Liver can go up to 12 hours, and the kidneys up to 18 to 24 hours.
BRONWYN HERBERT: The organs are precarious and precious, particularly as Australia has such a dismal rate of donation. It led then Prime Minister Kevin Rudd in 2008 to lament Australia "lagging behind" the world. Alongside the Health Minister Nicola Roxon, he announced more than $150 million to fund the necessary changes.
KEVIN RUDD: There are something in the order of 2000 people on transplant waiting lists and many more waiting to get onto transplant waiting lists.
NICOLA ROXON: We know that it is difficult for hospital staff to talk to families about organ donation, when their primary job is to try to save lives. We need dedicated, separate, professional staff who can approach the families in a sensitive way with proper training and this package will allow for all of those things to happen.
BRONWYN HERBERT: At that time, Australia ranked 28th in the world with just over 12 donors per million population. And this week the Parliamentary Secretary for Health and Aging, Catherine King, released the results for 2011.
CATHERINE KING: There is just over a thousand Australians’ lives were saved or improved through organ transplants in 2011 and that’s from the legacy of 337 Australians whose families took the decision to allow them to become organ donors. That trend’s increasing.
BRONWYN HERBERT: There’s now 14,9 donors per million people, which puts Australia 24th in the world, still lagging behind many so-called developing nations.
Jonathan Gillis is the national medical director of the Organ and Tissue Authority:
JONATHAN GILLIS: We're progressing pretty well. The first full year of implementation was 2010, and our organ donation rate's increasing, so that was 25 per cent better than 2009, and it was 50 per cent above actually the baseline of some years before that.
So I think there's no doubt that organ donation is increasing, but we do have a long way to go. This is just the beginning of the program and we expect it to increase year by year.
BRONWYN HERBERT: Despite the authority's optimistic outlook, the world leaders have more than double Australia's rate of donors. And in New South Wales, while having the highest number of people registered, donation rates are the lowest in the country.
For transplant professionals, it's frustrating and perplexing.
DEBORAH VERRAN: Despite placing a large number of doctors and nurses that although we saw an initial increase in the donor rate particularly over the latter half of 2009 and through 2010, it does appear that that's not going to be sustained in 2011 and this is of major concern to professionals such as myself.
BRONWYN HERBERT: And, rather than boosting the all-important donation levels, its bureaucracy has ballooned.
DEBORAH VERRAN: The appointment of a large number of people, who in some cases they may only be achieving one or two donors a year, and you are left wondering what are these individuals spending their weeks actually doing.
BRONWYN HERBERT: Those changes, announced by the Federal Government back in 2008, were shaped by ShareLife. The not-for-profit group had studied the success stories of organ donation in leading countries, including Spain, and handed a blueprint to the Australian Government.
Marvin Weinman, the former head of George Weston Foods, now leads ShareLife.
MARVIN WEINMAN: ShareLife really is very interested in giving Australians the same access to transplants as the citizens of the majority of leading countries. We're currently ranked 24th in the world, and this is for a therapy that has a success rate over 90 per cent. That's unacceptable to members of the community.
BRONWYN HERBERT: He says the Organ and Tissue Authority has not put in place the evidence-based program it was funded to deliver.
MARVIN WEINMAN: Fundamentally people haven't followed the plan. At a leadership level, we haven't seen people actually take the very detailed program and explain it to all the people in the hospitals and so on. And we haven't focused our attention on the most important elements which is getting things right in the hospital.
It's simply a matter of having the right doctors coordinating the whole program in a hospital, reporting to the CEO in the hospital, and being trained properly to educate all hospital staff on the requirements and most importantly on how to ensure that prospective donors, or donor families, are fully informed when they make the decision.
We don't have, if you like, a national system. Each of the states are doing their own thing and the performance has been highly variable amongst the states as a result and it's highly variable amongst the hospitals.
BRONWYN HERBERT: Organ transplant specialist, Deborah Verran, also believes the crux of the problem lies in the intensive care ward.
DEBORAH VERRAN: I believe that the donors are out there, but I believe that the new Donate Life network, a number of the staff don't have the requisite skills or training to basically be able to identify, manage, obtain consent from the prospective donors. And this is actually essential.
The conversation that's required with a family who are obviously really traumatised and upset because their loved one's dying or has just died is the most difficult conversation that can ever be undertaken and clearly to undertake that conversation requires that someone be highly skilled and trained at obtaining consent.
And although we've had consent levels of 50 per cent to 60 per cent in the past, other countries have shown that with up-skilling and training of professionals in the donations sector that you can obtain far higher levels of consent. So clearly this has something to do with the skill and the ability of people who are seeking to gain consent.
BRONWYN HERBERT: At Newcastle's John Hunter Hospital, Dr Jorge Brieva is at the coalface.
JORGE BRIEVA: I was wondering how Sharon in bed 2 is going today?
NURSE: Hi Dr Brieva. Sharon in bed 2 with a traumatic brain injury has been making good recovery, except that...
BRONWYN HERBERT: His hospital is one of the major trauma centres in the state and that means there's plenty of potential organ donors. Jorge Brieva is also the hospital's director for organ and tissue donation.
JORGE BRIEVA: The frustrating part is that sometimes we start to discuss organ and tissue donations with some families and they look at each other and would have no clue what their loved one would have wanted.
BRONWYN HERBERT: The New South Wales Government recently proposed a radical overhaul of organ donation laws to stop families overruling their relatives' wishes. Even if you tick the organ donor box on your driver's licence, your family can override that decision. And in almost 50 per cent of cases, that's exactly what happens.
JORGE BRIEVA: This year already we have nine patients that could have become donors, and somehow they expressed a refusal on any registries.
BRONWYN HERBERT: So the families or next of kin who were there then -
JORGE BRIEVA: Then they become aware that they said no, and they have no idea.
BRONWYN HERBERT: Those pateints had organs that could potentially have saved someone else's life?
JORGE BRIEVA: Yes. But it's very important to acknowledge it is a legitimate right to say no.
Look, it's such a complex issue. If you ask the majority of Australians whether organ donation is a generous and altruistic event that happens rarely in life, they would say of course.
However when it comes to donating organs, not all of them have the same attitude towards organ donation as they have to helping in other aspects of their lives, and perhaps what's happening is that there is a bit of information regarding how the process works; who can become organ donors? There's a lot of unknowns and needs out there.
BRONWYN HERBERT: The authority has spent more than $13 million in advertising and marketing. Last month it announced another half a million dollars in community grants to encourage more organ donation.
BRONWYN HERBERT: Does it surprise you that you have had such a high refusal rate here at John Hunter in the last year, given that at the same time there's been a ramping up of the media campaign to try and get people to talk and donate?
JORGE BRIEVA: Absolutely. Absolutely surprising. But, more importantly, as I said, I think that the majority of the patients or the donors that we did have this year that we couldn't progress was because they have expressed no on a registry.
BRONWYN HERBERT: Australia's poor donation rate is the subject of doctoral scholar Aric Bendorf's research.
ARIC BENDORF: What I'm looking at right now is, this is Australia and I've taken the past 20 years of organ donation performance for living and deceased donations, and I've analysed that. And what I've done is, I've done this across 74 countries.
BRONWYN HERBERT: He's just completed his PhD at the Centre for Values, Ethics and Law in Medicine at Sydney University.
ARIC BENDORF: What I can do then is look back over time and see what has helped or what has hurt organ donation performance both for living and deceased donors across the world, and there are a lot of interesting points that come out of this. When we look at leading donor countries we can see very clearly that it's all about brain death rates, high brain death rates.
BRONWYN HERBERT: Aric Bendorf says to understand organ transplants its critical to understand what "brain death" actually means. He uses the analogy of a "dead" computer:
ARIC BENDORF: You can look at a screen and to save energy it'll go to sleep. It goes into what we could call a coma. But if touch a key, or if I press a button, that screen can come alive and the computer can go back to doing word processing or a spreadsheet or graphics, whatever I want it to do. However, if the RAM in that computer gets destroyed then that memory is completely gone, that computer would be brain dead. So no matter what I do, that computer is not going to be a computer anymore.
BRONWYN HERBERT: Aric Bendorf's hypothesis is that despite Australia having roughly the same percentage of injuries that cause brain death as the leading donation countries, in Australian intensive care wards these same deaths end up classified as "death by futility". He says this is important, as it means organs can't be retrieved from these patients.
ARIC BENDORF: I was initially expecting to find that the types of death that lead to brain death would be substantially lower and indeed this is the commonly accepted wisdom here in Australia, that Australia is very safe, and that this is one of the reasons why our organ donation rates are low.
But I then compared what these rates were with what they were in Australia and I found out there's no real difference between these types of deaths, which are motor vehicles fatalities, strokes and traumatic head injury.
BRONWYN HERBERT: Intensive care specialist Jorge Brieva agrees with Aric Bendorf's conclusions.
JORGE BRIEVA: I think it's valid, his hypothesis. This is not strange to us in Australia that we do have a more proactive attitude towards end of life palliative care.
BRONWYN HERBERT: But he believes it's because intensive care units are so focused on making end of life as painless as possible.
JORGE BRIEVA: In Australia, once we recognise that a meaningful outcome will not be achieved we have a proactive attitude towards end of life. We gather consensus with families, we gather consensus with colleagues and we provide absolutely the best end of life practice we can.
So we will not go for a week in someone that will progress to brain death, just waiting for the brain death to occur, because we do not have good policies at the end of life.
BRONWYN HERBERT: But with that "best end of life" palliative care that you talk about, does that mean they're effectively ruled out of being potential organ donors?
JORGE BRIEVA: Well it could be that some of those patients providing time could become brain dead. The problem is that we do not know how many of them will become brain dead, and you may end up in a very risky gambling scenario which every day you go to families 'not today, but perhaps tomorrow', and families find progressing on grief and bereavement for two weeks.
So if we foresee that brain death is imminent, we will address organ donation as a potential outcome and if the families agree to that then we may wait. But we have to be sure to a great, or at least we have to have a good degree of certainty that brain death will occur. We cannot go into a guessing game for weeks.
BRONWYN HERBERT: So why is it then you can't actually then potentially get organs?
JORGE BRIEVA: Yeah well if, there is two ways that you can become organ donor in Australia. You can become an organ donor either because you become brain dead - if your brain dies and your heart continues to pump you may become an organ donor.
The other way of becoming an organ donor is if your heart stops first, and then you die. So you die because your heart stops, and if your heart stops in a place such as intensive care, and the heart stops within a time in which the oxygen into your lungs is ceased, then you may become still come an organ donor by what is called DCD, or donation after cardiac death.
And that is also a rare scenario because you have to be under the age of 65, and doctors will have to be able to at least have a degree of certainty that your death will occur within 60 minutes of the life support being removed.
BRONWYN HERBERT: And these "donors after cardiac death" are fast becoming a new issue for the transplant community. The advocacy group, ShareLife, has analysed the monthly figures produced by the Organ Donation Registry. It's found virtually all of the recent improvements in donation rates are because a new protocol allows more donors this way.
Transplant specialist Deborah Verran says there are medical issues with these donors, mainly because fewer organs can be used and the organs deteriorate quickly. And international evidence shows that countries relying on donations after cardiac death won't achieve the success rates of leading countries.
POPE JOHN PAUL II: Let us pray.
BRONWYN HERBERT: Spain leads the world in organ donation, largely because it's culturally accepted.
POPE JOHN PAUL II: From whom, every family, whether spiritual or natural (fades out).
BRONWYN HERBERT: Pope John Paul the second gave his support to the issue, and the largely Catholic society of Spain has followed.
Academic Aric Bendorf says cultural and religious values have influenced a country's rates of donation.
ARIC BENDORF: The Christian faith tradition has historically a more supportive role toward organ donation. This has to do with the Pope coming out and saying that organ donation is good. Other religions that view death differently, such as Buddhism, Judaism, Islam, they have different views toward how we treat dead bodies.
JEREMY LAWRENCE: Hi, I'm Rabbi Jeremy Lawrence from the Great Synagogue. We're standing in my study at home. Around me are a variety of books, dating back from the, well, copies of the Bible which are three and a half thousand years old, we believe that the Torah was given on Sinai, through to the Rabbinic legislation of the Mishnah and the Talmud from the second and fourth centuries of the common era, and even guides to Jewish ethics which are printed in the years 2011 or found on CD-ROMs and USB sticks.
BRONWYN HERBERT: Rabbi Lawrence says traditional Jewish religious law ruled out organ donation, but as medical technology has improved the doctrine has evolved.
RABBI JEREMY LAWRENCE: Once upon a time those organs couldn't be fresh enough to use and there would be limited chance of success. Today those organs are fresh enough to use and you've got a 95 per cent chance of saving a life, so what's happened is the questions have become more sophisticated, and the answers based on the old text have enabled new answers to be given to society encouraging and possibly even mandating organ donation.
BRONWYN HERBERT: Mandating organ donation is unrealistic and unlikely, and it would be a brave hospital to override a family's wishes. But for recipients of life saving transplants they just wants an end to the misconceptions.
KIMBERLEY LIVINGSTONE: People think that you're going to get cut up. You won't. It's a very dignified surgery. People also think that they won't try and save their relative if they're going to donate, that's also wrong. Everything is done for the patient.
Waiting for a transplant is the worst thing that could happen to you. It's the longest, torturous, your life is on hold. I've been through it, I've lived it. I thought that, you know, thought that I didn't have the best outcome coming. I survived and now I'm pushing on. I'm here to make a difference and I want to help everybody else be just as strong.
ELIZABETH JACKSON: Kimberley Livingtstone, recipient of a double lung transplant, ending that report from Bronwyn Herbert.
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