With just 13.8 donors per million people last year, Australia has one of the lowest organ donation rates in the developed world.
Airdate: 
Tuesday, October 18, 2011 - 20:30
Channel: 
SBS One

While that may be the highest figure in ten years, it remains well below other countries, such as Spain - considered world leader with 32 donors per million in 2010.

This week Insight asks why Australians are saying no when it comes to donating organs.

It may be psychological barriers that are stopping patients, and their relatives from saying yes.

But some say Australia has a flawed system. Despite dedicated organ donation teams
in hospitals, potential donors are not being identified and family members are not consulted sensitively - and are sometimes overriding the wishes of their loved ones. 

Transcript

JENNY BROCKIE: Welcome everybody, good to have you here with us. Kerri, I wanted to start with you because you were asked to donate your son Peter's organs after he suffered massive brain injuries in a skateboarding accident. You found the hospital situation really difficult, didn’t you, why?

KERRI ARGENT: Yes, we did. We had arrived at the hospital after an ambulance chase nearly an hour long and we arrived and then had to wait and Peter had been in the local hospital for almost two hours while they were trying to stabilise him. When we got to the hospital, we sat and waited and then we were taken through to see him for the first time since his accident.

When we got in there, um, we had a doctor approach us to tell us that - and come to tell us exactly what had happened to Peter, and he could only explain that he was not likely to survive and that there was - if he did survive he would never be Peter again - most likely. Then we were only able to hang on the thought that, that is only a most likely, but what about the chance that he might be OK?

JENNY BROCKIE: Was that the time when you were asked about the organ donation?

KERRI ARGENT: Shortly after that the same doctor, who was actually going off duty, came and spoke to us about organ donation then. Not saying will you donate, but he said that we know that Peter is a donor and has registered on his licence.

JENNY BROCKIE: He was a registered donor, in fact your whole family were registered?

KERRI ARGENT: Yes, we all were and we said, yes, yes, that is fine, but hang on - he is not dead yet. What about - what about saving Peter? You are asking - you are his doctor, why are you asking us this question.

JENNY BROCKIE: So the problem was that you had the same person doing it?

KERRI ARGENT: At that point, but he was going off duty and the next doctor who came on who was also an intensivist as I found out since - I didn't know the distinction between the doctors who were looking after Peter and the fact that if it did progress to organ donation it was going to be different people who were going to come to talk to us about that.

JENNY BROCKIE: You said you felt a flurry of doctors and you were very confused.

KERRI ARGENT: It was - there were white coats everywhere, nurses and people in and remembering all of Peter's mates came as well, their families came. This is the middle of the night, we had been sound asleep and we got that call. This is 2 o'clock in the morning and we were trying to ring sisters and get them to come from Sydney and London and everywhere knowing that he was critically ill but still hoping that he was going to survive. Then I was feeling, well, hang on - organ donation. I am a science teacher and an Ag teacher, why don't I know the facts about it? Why do I have to be thinking about what organs? How do I know if he is dead? How can I trust that doctor, how do I trust that doctor?

JENNY BROCKIE: It is interesting because you are on the register. The reason I am wanting to talk to you about this because people need to get a sense of what it is like to be in those situations. And you did make the decision to donate his organs in the end but couldn't because he died of a heart attack.

KERRI ARGENT: That's correct. We had already said yes to that question but Terry and I both found that it was quite difficult to know what was going on in regard to organ and tissue donation. The hospital staff were wonderful, don't get me wrong, they were wonderful but I now know since that, that was in 2008 and Anne Judd who is the nurse educator for organ and tissue donation in the hospital now, I have done a lot of work with her since, and the way she explains things to me is just wonderful. To actually have that person in the hospital who is a clear, different person all together to the doctor’s staff, who were supposed to be looking after Peter, that would have been wonderful at the time.

JENNY BROCKIE: That is what is supposed to be happening now as a result of the reform package that was introduced some time ago which we will talk about in a moment. Peter Saul in Perth I wanted to talk to you about this also because you are an intensive care specialist. You have these conversations with people. I wonder, is Kerri's story still familiar? Is that sort of thing still going on in hospitals on the ground?

DR PETER SAUL, INTENSIVE CARE SPECIALIST: Yes, listening to Kerri speak is making my armpits sweat, that is exactly what it is like and people say all those things, "I don't really believe he is dead, how can you say he is dead - he doesn't look any different to the way he was." Other reactions include, 'Surely you are not expecting him to go through more after all he’s been through and now you are telling me you are going to rip his heart out." People speak very emotionally, people are very distraught at this moment, it is a very tense time.

JENNY BROCKIE: Do you think we are handling it as well as we could be at the moment?

DR PETER SAUL: Sorry, I have lost you now.

JENNY BROCKIE: Can you hear me now?

DR PETER SAUL: Yeah.

JENNY BROCKIE: Do you think we are handling it as well as we could now Peter, in hospitals or do you think there are still major problems in the way that people are being spoken to?

DR PETER SAUL: I think that Kerri points out a number of things and one is there is a problem in the way that people approach this and the lack of knowledge that people have before this even starts. Then there seems to be a problem in the way we treat our families and look after them through these incredible different times and then there seems to be a problem with the way we use the language that we use to try to explain what we are trying to explain which most people would have very little understanding of. How do we build up that relationship of trust in that time? I think there is a lot wrong with the culture of the way that we talk about this in the general public and the culture about we as doctors and how we deal with this in the hospital setting.

JENNY BROCKIE: Catherine, your husband died two months ago at home after a long illness. Now, you both always said that you would donate your organs. You talked about it together. But when it came to donating his organs you couldn't do it, could you, why couldn’t you do it?

CATHERINE BARTHO: I think because in the home nursing situation you are very, very busy and there was no outside person, not the GP, not the palliative care team, whoever mentioned it - I mean I think the palliative care team were very well trained in talking about very sensitive issues, even then.

JENNY BROCKIE: So no-one raise it with you at all?

CATHERINE BARTHO: No, no, no one.

JENNY BROCKIE: I know your daughter tried to raise it with you, didn't you, Sophie, what did you do?

SOPHIE BARTHO: It was very apparent dad was dying and I - probably about a fortnight before hand I sort of raised it in conversation with mum. You know, 'have we completed the paperwork’? It was very clear it was a conversation that we didn't want to have. It is an incredibly intense time and despite all the previous conversations, it was just very hard to go there. I think to Kerri's point, if someone outside the family, but even also outside the care team, because it is very, very tense with the palliative care workers because you do get some conflicting advice about medication and the situation, so I think to have it come from an external person who is specifically there to talk about organ donor organ donation would be very powerful.

JENNY BROCKIE: So that would have helped you and Kerri obviously what would have helped you is having the person who is there now in that particular hospital. Kevin Rudd, before you became Prime Minister you received a donated human heart valve yourself and you were responsible for a raft of reforms that came through, you know, during that time. I just wonder what you think hearing these stories. Do you think they - what do they tell you about the way we are dealing with organ donation at the moment?

KEVIN RUDD, MINISTER FOR FOREIGN AFFAIRS: I think the starting point is that we are dealing with human beings, and human beings are rationale, human beings are emotional. Some human beings would also have an added spiritual dimension to their lives, so you are dealing with the total person when you are confronted with a crisis in your life..

The other thing, listening very carefully to what has just been said about the beautiful young boy there who lost his life skateboarding, and this good man here who died as well, is that however rationally we seek to prepare ourselves for that event, emotionally we can never prepare ourselves. I think that is the truth.

Therefore, the challenge, given everyone around this discussion tonight wants to see those donation rates go up and successful transplants go up, because it is the gift of life, it is donating life to someone else from which I obviously have benefited as well, is that you can reduce some of that pressure - some of it, not all of it but some of it - by what DonateLife is now seeking to do which is to encourage people to have these full conversations with the entire family before hand so it actually is not the new topic which you have to confront when you are dealing just with the absolute crisis of my loved one is slipping away in front of me.

JENNY BROCKIE: Where would you be if you hadn't received that human heart valve 18 years ago?

KEVIN RUDD: Let's be very clear when you are talking about a tissue transplant and a valve is not as it were a kidney or a liver, so I am probably the least example of what many people here this evening would be going through or their family and loved ones have been through. Certainly if I didn't have my damaged aortic valve replaced I would be six feet under, and that might have pleased a whole lot of people in politics.

JENNY BROCKIE: Well, you have just had another one - you have just a replacement, so presumably those same people are very worried now.

KEVIN RUDD: Anyway, put that to one side. So, I think all of us who have had experience with the medical system live in absolute wonder and awe at the sheer expertise represented by the Australian medical profession. If I had this condition a generation ago, rheumatic fever which stacks of kids had, throughout 20th century Australia and now it is still a problem in indigenous Australia, then frankly you would be dead in your mid-30s or earlier so I had a replacement in my early 30s, they last 20 years, you have another one and"¦..

JENNY BROCKIE: And in another 20 years?

KEVIN RUDD: Yes, in my case I will have another one.

JENNY BROCKIE: Bruce Pussell, you are a transplant physician. This reform package was introduced when Kevin Rudd was Prime Minister. Is it working?

PROFESSOR BRUCE PUSSELL, SHARELIFE: No, I don't think it is working. I have been in the transplant space for about 30-odd years now and we have seen many, many patients on the waiting list waiting, five, seven, ten years for kidneys in my case and dying or growing old whilst on the waiting list. We see them suffer. So we know in this country we are extremely successful in the other side of organ donation - that is in the outcomes for organs and tissues, we have the best in the world rates of graft survival and patients survival in the end.

JENNY BROCKIE: What do you think is going wrong?

PROFESSOR BRUCE PUSSELL: I want us to achieve what Kevin announced in 2008 as the word's leading performance and I think we should be targeting the world's leading performance because countries around the world can do two or more times our organ donor rates by implementing a scheme that is proven practice.

JENNY BROCKIE: Just outline for us what you think isn't working and what needs to happen.

PROFESSOR BRUCE PUSSELL: Well, there are a couple of things. Firstly, the detailed plan that was founded by the Government in 2008, which was worked on by an organisation that I belong to called Share Life and with the Department of Health and Aging to fund and identify the position and the job descriptions and put into the KPIs. That whole plan was funded and then the plan was not implemented. The plan was implemented based upon an ICU model rather than an Intensive care model?

JENNY BROCKIE: Yes.

PROFESSOR BRUCE PUSSELL: The plan was implemented, based on an intensive care model rather than a whole of hospital model. In order to promote organ donation within a hospital you have to have the whole of the hospital onside so that everybody changes the culture in that hospital to support organ donation, no matter where the death may occur in the hospital or elsewhere.

JENNY BROCKIE: And that is not happening?

PROFESSOR BRUCE PUSSELL: I don't believe that is happening. Because ICU is intensive care focused and not whole of hospital focused. The second thing I think is that there has been a failure to set a target. Mr Rudd set a target - world's leading performance which at that time was Spain - we are not setting a target. If you can't set a target how can you induce change because you have no performance measure to measure yourself against - if you don't set that target, so change involves setting a target and trying to run performance around the target, so you have to set the target. The third thing I would like to say is, training is the most essential part. You have to have the right people involved and you have to have them well trained. They have to be trained professionally and they have to be trained thoroughly. That has to be ongoing all the time.

JENNY BROCKIE: And you don’t think that is happening either?

PROFESSOR BRUCE PUSSELL: I don't think that is happening. I don't think that anyone has been to Spain to participate in their course.

JENNY BROCKIE: Catherine King it is your portfolio area – you are responsible, any comments on that?

CATHERINE KING, PARLIAMENTARY SECRETARY FOR HEALTH AND AGEING: A few things and Bruce knows the dispute we have with ShareLife and about some of the claims that they are making. The first thing that is really important to know is that the organ and tissue donation rate in Australia is actually going up, it has been going up. I understand that Share Life would like it to go up much faster. We are on track to meet the 15 donors per million of population this year compared to the ten when we first started this reform program.

JENNY BROCKIE: Do you have a target?

CATHERINE KING: Yes, we do have targets and they were set recently and States and Territories also have targets which we will stretch each year to increase the number of organ and tissue donors that they actually have and it is important to understand that our rate is going up. It is going up - at the same time we are compared obviously to Spain. Spain has had 20 years of reform to actually change their clinical practice. We have had our first full year of implementation just last year and the rates are continuing to go up.

Are we perfect? No of course not. This is a collaborative effort that we have to work through with States and Territories, with clinicians in the health system and with the national organ and tissue donation authority and we want everybody to be part of that reform process and working towards change.

JENNY BROCKIE: Mark Colvin, you are one of 1700 people on the waiting list for a donation, you are waiting for a kidney transplant. Bruce is your doctor by the way.

MARK COLVIN, ABC RADIO BROADCASTER: That's right - he has kept me alive since 1997.

JENNY BROCKIE: What do you think when you hear this, I mean we are hearing that we are on track, that the rates are going up but then we hear the system isn't working. What do you think?

MARK COLVIN: I find it intensely frustrating because – just to give you an idea of what my life is, you can say I am on the waiting list but that doesn’t give you an idea of how it actually affects my life. This morning at 7 o’clock I got up and had went to the dialysis centre, I had two great big needles struck into me and I was sat there in a big chair from 8 o'clock to 1:30. It takes six hours out of your day, Tuesday, Thursday, Saturday, you don't get a proper weekend, you never get to go away on a holiday or anything like that.

JENNY BROCKIE: And you are still doing a full-time job?

MARK COLVIN: And I am still doing a full time job so it is tiring and quite draining as well. I have been on dialysis for just over a year when I went on dialysis I was told that the waiting list was four to seven years. Now, you know, having been there a year it must be down to three to six years, but just to give you a couple of figures. Australia is on 14 deceased person per million. I don't want to blur the thing too much with too many figures, Spain is on 34. Spain went up very fast once it started. Portugal and Croatia have had this rocketing rise and are getting towards 30 already. I feel that if we went faster then my waiting list would be down to maybe two years instead of four to seven.

JENNY BROCKIE: How do you think we could go faster? Where do you sit in this argument? Do you think the system is working at the moment with the reforms or not?

MARK COLVIN: I think it is working much too slowly. I think Bruce is right from everything that I have read and heard that - I think one of the keys to this is that there has to be somebody in every major hospital who is independent, fully trained, goes on getting on trained, has a beeper, appears at the right moment and is a specialist in this particular subject.

They are not attached to - I have the greatest respect for ICU people. They are fantastic, they do a fantastic job, but I cannot see how there is not going to be a conflict if you have been trying to keep somebody alive for the last two weeks in incredibly difficult circumstances and then you come out and you are the person who has to say, "I have to pronounce this person dead or your son is brain dead", and then you have to be the same person who says, "We want to..." and sometimes they use this awful word, "Harvest", your organs.

It just doesn't make sense - you have to have somebody independent who answers to the chief executive of the hospital and who is not beholden to a particular department.

JENNY BROCKIE: They are quite separate.

MARK COLVIN: Yes, and as I understand it quite a lot of hospitals they - a department has taken on an extra staff member and makes them work half a shift here and half a shift there. It has to be somebody full time on this job.

JENNY BROCKIE: Okay Catherine?

CATHERINE KING: I think it is also important - Spain does use intensivists - I think there is some mythology that Spain doesn't do that – so I do want to say it actually does. At the DonateLife staff we have over 200 of them across States and Territories in 77 hospitals. There is a mixture - a lot of the medical directors – it is true - are intensivists and Jahya beside you is one of them and we can talk to him about that and his experiences in doing that. But it is absolutely in intensive care were some of these critical decisions are being made. It is really important, we cannot cut intensivists out of it – it is impossible to do that.

MARK COLVIN: I am not suggesting for a minute that you cut them out. I am talking about the actual transaction, and the other thing is what you said, what it brings up is that I was looking at the figures - State by State breakdown, and you talk about the figures going up. They are only really going up because there is a 42% increase in Victoria. A lot of other States have gone backwards and gone backwards fast. It is supposed to be a national system and you should not have to move States to get a better chance.

PROFESSOR BRUCE PUSSELL: There is no problem with an intensive care doctor being the organ donation medical officer for the hospital. No problem at all. The issue is not their training or who they are - it is what their responsibilities are. Their responsibility has to be for organ donation, not that they work in the intensive care for one shift and organ donation another shift.

JENNY BROCKIE: And you think that is what is happening at the moment?

PROFESSOR BRUCE PUSSELL: That is certainly what is happening in many hospitals, including my hospital where there is a half time person involved in organ donation and the other half is on the floor in the intensive care unit. It is not about the person, not about the training, it is about the position occupied.

JENNY BROCKIE: And that was not the intention of this package, Kevin Rudd, was it?

KEVIN RUDD: The intention of the package - and by the way I am here for one purpose and is it not to debate models because I'm not a medical expert. The purpose of my being here is to encourage everyone watching the program and their families to become organ donor, let's be very clear about that.

The intention of the package is to make it possible for Mark to have a real prospect of getting a hold of some donated kidneys as rapidly as possible. That is the intention of the package. What we did when we established if organ and tissue authority back in 2008 was then commission - I think it was the Professor of surgery at Westmead, I can't remember the individual - Jeremy Chapman who then under took consultation with several hundred specialists in the field – on shore and off shore – about developing what they judged to be the most appropriate model for Australia.

Do I think the thing has problems with it, need to go faster? Any system which you are establishing for the first time is not going to work perfectly and it is going to take a long time to bring down the rates.

MARK COLVIN: But are we keeping up with Croatia?

KEVIN RUDD: Hang on, let me respond with that directly. Let's just - we can all slice and dice statistics in one particular way. The national truth is, when we started we were probably at 10 donors per million. That was the average across the nation between 2000 and 2008. Now, as at the end of this year, 2011, we are up to 15. If you look at that progress in the first two years of implementing this thing, it compares, frankly, about the same as the first two years of the Spanish reform 20 years ago.

Now, Mark's criticism is absolutely valid - we need to accelerate our progress but let me tell you what we started with was a total shemozzle. This was a non-existent system and partly my frustration as Prime Minister at the time was looking around, knowing I had been a beneficiary and saying how the hell do we fix this up so it can be improved, but I say, in full sport of what Catherine is saying, and she has done a terrific job as parliamentary secretary, is that barely two years into it, the rate of increase across Australia - unevenly, you are correct, Victoria is doing well, South Australia is doing well.

MARK COLVIN: No, South Australia went backwards last year.

KEVIN RUDD: But if you look at the lines across the time, but in other states and if you look at the one we are in at the moment -NSW much less well and that probably deserves separate analysis, but what I am saying is with now 200 staff dedicated to these functions across 70 or 80 of the major teaching hospitals in the country, my expectation, as the bloke who partly brought this thing into being, is that we will see a continued increase and my hope and my prayer is that it makes it possible for guys like him to get access to kidneys, not in three to six years, not in two to four years but in a nearer term to that. That is the objective.


JENNY BROCKIE: We are talking about why Australia has one of the lowest organ donation rates in the developed world. Oliver, I wanted to ask you about your son, Doujon, and the decision that you made when he died in Greece three years ago after he had been assaulted while he was on a holiday there. Now, you donated his organs and I am interested in how they raised it with you in that Greek hospital.

OLIVER ZAMMIT: Yeah, actually it is interesting listening to this. We were actually approached by a doctor that wasn't working in ICU at the time, intensive care. This doctor actually sat me down and told me a story about her son and how she lost her son over in America at the time and his donation of his eyes. Just telling me the story actually just reminded that Doujon was a registered donor. It is the last thing that comes in your head when you have a loved one in ICU.

Listening to her story I knew what he was asking indirectly without even asking. I did comment to her and said look 'I know what you are asking - I know Doujon is an organ donor but I cannot make that decision without ringing my wife back up in Australia.’ She said, look, that is fine, take your time. I am not asking you to do anything - I am just telling my son's story. What you do is my own choice.

JENNY BROCKIE: So it was very personal, she shared something intimate with you.

OLIVER ZAMMIT: She shared a story, she didn't actually ask. Look, I think education is very, very important. I think we really need to know what brain death is and I think we have to put our trust in the doctors that they take an oath to save a life. They are not going to take shortcuts and let someone pass away to save another three or four people. You have to put your faith in the surgeon and if they tell you there is no hope, you shouldn't have to doubt them. You should be able to trust them. You know, I sat there over two days waiting for certain tests to come back to show that Doujon had no brain activity and when those tests came back we were sure, that yeah, Doujon wasn't with us and we decided to proceed with his wish.

JENNY BROCKIE: Was that a hard decision?

OLIVER ZAMMIT: It is always going to be a hard decision. The fact that we did discuss it six months prior to Doujon going overseas"¦.

JENNY BROCKIE: Helped a little?

OLIVER ZAMMIT: It did help and I think the hard part was finding the strength amongst ourselves to actually go ahead with it. Do you want to say something?

ROSEMARIE ZAMMIT: That decision makes everything very final and that is the hardest thing because as a parent, and having a loved one and being told that they are brain dead, whatever, you just hold on to that last bit of hope and to give that up, to make that decision is giving up that little bit of hope.

JENNY BROCKIE: You are being asked for acceptance as the first part of the process, aren't you, which is almost the opposite of what happens with grief. With grief you go through a whole range of things and acceptance tends to be at the end rather than at the beginning.

OLIVER ZAMMIT: If they actually just reminded us that Doujon was an organ donor and at the end that they would proceed with his wishes without actually putting the pressure back on the grieving family, which the last thing you are worried about is donating his organs. You are dealing with a loss. So it is really difficult. I think if we had a system where, you know, we educate our children at school and we educate certain religions and have it accepted that once you register, you are a registered donor and it shouldn't be up to your family after that.

JENNY BROCKIE: We will talk about that in a moment about the families. While we are talking to you, though, you have met most of the recipients of his organs.

OLIVER ZAMMIT: We met three out of the four, yeah.

JENNY BROCKIE: And you met the man who received your son's heart. I think we have a picture of that meeting here - Costa. That is an extraordinary photograph I have to say, looking at that photograph just - it is very emotional, even for an outsider. But you also ended up being best man at Costa’s wedding.


OLIVER ZAMMIT: That was really difficult, yes. Yeah, look, they are a lovely family. Seeing the good that came out of Doujon's donation is just, you know - to see a man with two days left to live and walking after ten days of receiving his heart transplant, it is a miracle in itself. These surgeons are just fantastic, the work they do.

JENNY BROCKIE: Rosemarie, what has that all been like for you?

ROSEMARIE ZAMMIT: Very difficult. In the forefront of everything is my loss, so that is what I have to deal with. For me that is the main thing.

JENNY BROCKIE: Oliver, I am also interested that you donated Doujon's organs but you didn't "¦.

OLIVER ZAMMIT: We agreed to carry on with Doujon's wishes. It was his donation.

JENNY BROCKIE: But you were asked and you agreed to that decision. But his eye tissue wasn't donated. I am just interested in why.

OLIVER ZAMMIT: That was something that my wife's stipulated that she didn't want to donate.

ROSEMARIE ZAMMIT: I feel that your eyes are your window to your soul. In my grief in that moment I was not thinking straight, I suppose, lack of education, I wanted Doujon to come back with his eyes and..

OLIVER ZAMMIT: And the reason being?

ROSEMARIE ZAMMIT: I thought I would see his eyes again. I was just so emotional, I wasn't thinking straight.

JENNY BROCKIE: It is interesting, do you feel differently now?

ROSEMARIE ZAMMIT: I do. The first thing when I went to see Doujon of course not seeing his eyes and my first reaction was I could have donated his eyes. But like I said, lack of education - I was grief stricken. You are not thinking straight. So, yeah.

JENNY BROCKIE: Elise, you are prepared to donate your organs, aren't you - but not your skin and your eyes.

ELISE GILLIES: Yes, that's right

JENNY BROCKIE: Why?

ELISE GILLIES: I just think - I guess my skin is like the outside package and I guess I want to keep that intact. I know it sounds a bit silly because they can take everything else out of me and by all means I do want to help other people with my organs and so forth, but I guess the outside part I want to keep intact and therefore I want to keep my eyes as well. I guess they are an identity.

JENNY BROCKIE: The man behind you there, Rohan, you are a cornea recipient.

ROHAN TOLL: Yes.

JENNY BROCKIE: Talk to Elise.

ROHAN TOLL: Look, it is an interesting point because I was - I am very, very grateful for the being a recipient of a cornea. My condition is not life threatening, so it doesn't actually have an impact on whether I live or die. But it certainly changes the way you perceive life. It gives me an opportunity to perceive visually where before I just saw blur. So it has a big impact on the things that I do with my kids. You know, the way I go about living life. It also allows me to see the world through someone else's eye. So I get to appreciate different perspectives and I sit and listen to the doctors and politicians and general public and I often sit back and think, "Well, what would the person who lived with eye before me think of what you are saying?"

JENNY BROCKIE: Did you ever think like this before you needed the transplant?

ROHAN TOLL: Probably I did have thoughts in the way that I went about my life, but obviously when you get told that you are going to have this operation, I then started to think about, well, what does that mean? How is that going to allow me to view the world in the future?

JENNY BROCKIE: Peter, I am interested in asking you as an intensive care doctor, are eyes and skin in a different category for people when they are asked about organ donation, do you get much of that kind of feed back we have heard here?


DR PETER SAUL: Yes, we do. I think it is important that people do mention tissue as well as organs. When we are talking about organ donation, I do think we should mention tissue as an option. One important thing there is you don't necessarily have to go through to the same process to get a tissue donation as you do for an organ donation. We need to make sure that everybody is aware of the full package - it isn't just about intact organs it is about tissue.

What is interesting, you mentioned Spain, we are having more success in Australia getting people to donate tissue than they do in Spain, even though they have much more success with organs. I do want to clarify one thing which I do think that intensivists do need to be at the forefront of this change because we do end up, one way or another, we do end up very much, in the gun when it comes to having these kinds of discussions.

I do think that in fact in Spain most of the discussions are done by intensivists, even when they are acting as organ donation specialists. And I think that is still something that we have to deal with in Australia and I have to get my colleagues to come on board and become as enthusiastic as I am.

JENNY BROCKIE: Nicole Carr in Brisbane, you said no to everything in terms of organ donation on your drivers licence, why?

NICOLE CARR: I said no on my drivers licence but that does not mean that I am not willing to be a donor. I don't believe that the question should be on the drivers licence - I don’t want to be associated with road kill and whisked away to be harvested, I want you to save me and have a little think about it. I have little faith in the management system in the hospitals, particularly in their computer systems and information retrieval. Who knows where my parts would end up?

And should I die, would I resemble who I am - I want my kid to be able to say goodbye and if they need that extra cuddle before the coffin closes, if they want to run up and have the body there and they want to open it up and see their mummy and they want to make sure she has passed away - that is their right as a 5-year-old and 3-year-old.

And then also on the licence - My kids don't have a licence, what happens to them if we are all killed in an accident? Does my yes mean yes for them too. I think it best if I just have the discussion with my family, my family all know that I am willing to donate what is in me, as long as I can be put back together and resemble who I am if the way I die obviously allows for that.

I just don’t want a yes/no answer and I really want to have a say as to who my organs go to. I really just don't want to be whisked away, organs taken, sent all around the countryside, I want my family to have a say in that and they know what my beliefs are for that.

JENNY BROCKIE: Nicole, I want to get a response on this. Who would like to talk to Nicole? Oliver, yeah.

OLIVER ZAMMIT: If you want to say where your organs go and who they go to you shouldn't be registered as a donor anyway. Organ donation is a gift to humanity - it is not to a particular race, or a particular religion. You are giving it back to humanity and it goes to the person who needs it the most at the time.

JENNY BROCKIE: Bruce?

PROFESSOR BRUCE PUSSELL: Registries don't work in increasing organ donation rates, in fact if you look at a driver's licence and there is a form that you fill out once every five years and you put a tick. There is no education around that decision at all. It is inappropriate to make people make that decision at the time. In fact, in our guest’s case, if she ticks no to everything, it doesn't matter what her family says no is no and the organs won’t be taken.

JENNY BROCKIE: Catherine, you are agreeing with this.


CATHERINE KING: NSW is the only State that continues to have the driver's licence as the form of registration as well as being part of the national system. We are certainly in discussions with the NSW Government about how we can change that because it is in fact not helpful to have one State sitting as a separate system.

The organ donation register - it is one element of part of the overall scheme of things. Obviously we want people to register so we want them to make an active decision that they wish to become organ donor, but we know it is absolutely critical that they have the family discussion but then after that about what actually happens in hospital when dealing with those families.

So that is why most of the Commonwealth's and the national effort is on organ and tissue donation discussions with family, it is OK to talk about organ and tissue donation as well as the money going into the hospital. We would agree with Share Life that the licence scheme is an anomaly in the national scheme and we would like to see it gone.

JENNY BROCKIE: Mark?

MARK COLVIN: I think it’s true that registries are really irrelevant because what happens is you could make a living will, you could have that living will by your bedside, you could have told all of your doctors about it and if at the end of the process, when you become brain dead, if a member - a close member of your family says no, even that living will would be useless. The registry, as I understand it, is often not consulted for various reasons because it happens in the middle of the night and it’s difficult to get on to the Red Cross.

JENNY BROCKIE: What is the answer to that, just dealing with the families better?

MARK COLVIN: I think it comes back to working with the families, getting the system right in the hospital. I have absolutely nothing against what Kevin says about the absolute need for everyone to talk about this with their families. But that is only the first part of the process. Then there has to be a system in every hospital and it has to be a nationally automated system.

JENNY BROCKIE: We will get on to the family situation in a moment because there is a lot of confusion about that. Yahya I wanted to ask you about your role as an intensive care doctor as well. We are talking about barriers and resistance and we have heard this story about somebody who doesn't want to sign anything that indicates that their organs will be donated. I wonder how much religion comes into this in your work, in intensive care, do you see religious objections to people donating their organs?

DR YAHYA SHEHABI, INTENSIVE CARE SPECIALIST: I think religion is a very powerful weapon and it can be used by people to justify whatever means they are going to end up with. I think what happens in religion in situations when you pose that question about organ donation it does give the family, or people who wanted to donate an avenue to say yes, our religion won't allow us to do so, but we will donate. But at the same time it takes them to take a moral stand justified by a religious belief. That is the problem with religion. Most religions, the majority of religions, they all promotion the donation, they have recommendations about organ donations - when it can be done and when it can't be done, but at the end of the day it is really the personal choice of the family and how they perceive that instant and that time.

JENNY BROCKIE: Do you think people understand that in terms of their religion, or do you think that people believe it is against their religious beliefs to not donate organs?

DR YAHYA SHEHABI: There is some people who believe that their religion is against organ donation but that can be easily explained to the family by a lot of evidence from the counsel of, for example, the counsel of Muslim clerics in England or in Australia or even in Saudi Arabia, or, for example, Jewish clerics, they do organ donation and transplantation in Israel. It shouldn't be any different to a Jewish family in Australia for example. So religion doesn't really put barriers, it is people who put the barriers and they - the religion is used as an excuse for that.

JENNY BROCKIE: Sheila you are one of those people who does want to donate?

SHEILA KIRCHE: I don't want to donate because I don't want to donate, but also in our religion as the good doctor was saying, originally, years ago, you said you had to go whole to your maker. Nowadays, Jewish thought is changing slightly, if your - if I wanted to donate a kidney, I could donate a kidney, if it was bone marrow transplant, quite a lot of that is going on within the Jewish religion, so you can do that. But a lot of people we have heard talk about being brain dead, in Jewish religion, your heart actually has to stop because sometimes - and I heard the lady with the skateboard son - maybe if he wasn't quite brain dead you have that bit of hope. We know because we lost a son last year as well. Sometimes when you have that brain dead situation, sometimes just a miracle could happen. You are hoping for a miracle.


JENNY BROCKIE: So you are holding out for the hope. Julian Savulescu I wanted to bring you in – in Oxford because you are an ethicist and you have been listening to all of this and I know you have a view on what should happen to people who don't want to donate their organs, do you want to tell us about that.

JULIAN SAVULESCU, ETHICIST: One basic ethical principal is one of reciprocity, so if you are not prepared to donate an organ you shouldn't be entitled to receive one, or at least you should be put down the bottom of the priority list. I don't believe that people should be able to have their cake and eat it to when it comes to life and death. There are large numbers of people, 500 to 1,000 people a year die. If we lined those people up and had to point to which ones we want to die the situation might be different, but we just don't see the ones who die and I think that is part of the problem.

JENNY BROCKIE: You would be at the bottom of the list, how would you feel about that?

SHEILA KIRCHE: I would be at the bottom of the list maybe from his point of view, maybe I deserve to be at the bottom of the list and maybe he has a valid point, but I think we are looking at a different situation where who is going to live and who is going to die, you are going to point in directions, but that is also what we are looking at I suppose when we are thinking of donating an organ. But Jewish thought is changing.

JENNY BROCKIE: We are talking about organ donation and why Australia has one of the lowest rates in the developed world. Let's have a look at how the Federal Government is trying to up the rate of organ donation here.

COMMERCIAL:

WOMAN: Guess what I have decided?

MAN: What is that?

WOMAN: I have decided to be an organ donor. It is a good feeling.

MAN: And it is good you are telling me, it’s important.

To donate life, the people close to you need to know your decision, why? Because in the end they will be asked to give the final OK.

WOMAN: OK?

WOMAN: OK.

To donate life, discuss it today. Authorised by the Australian Government Canberra

JENNY BROCKIE: Mark, what do you think of the campaign?

MARK COLVIN: I think that they have spent a lot of money on it and as I said earlier I have nothing against people talking to each other, I think it is really good, but I don't think there is enough education about it. As we have heard today, there are people getting into that situation and don't really know what it means. There is nothing about brain death in there, for example. As I say, they have spent a lot of money and I would have expected to see bigger results by now. I think we ought to be going up from 14 up to 30 in a series of quite big steps.

JENNY BROCKIE: You mentioned earlier that no matter what you decide your family can have the final say about what happens in the hospital. Stephen, I wanted to ask you as a legal counsel base you are legal counsel for a major transplant hospital if I say I want to donate my organs, what is the law? Can the family override that decision?

STEPHEN TAFFE, LAWYER: Well, every State and Territory in Australia has legislation which says that if you consent to being an organ donor during your life time, then that is valid consent. There is no legal requirement for further consent from the family and there is no legal right for anyone to overrule that valid consent. Now, if you haven't expressed a wish during your life time on the issue of organ donation, then the law says that your senior available next of kin can consent. Again, there is no legal requirement for further consent from your entire family and there is no legal right for anyone to overrule that consent.

JENNY BROCKIE: What is happening in practice is actually different to the law?

STEPHEN TAFFE: That is right. In practice, what happens is your family will have the final say. So the consent process and the law goes out the window and your family has the final say and the problem with that is, even if you are a registered organ donor, your wishes may not be carried out. In practice whoever is standing by the bedside has the opportunity to say no. There are a range of problems with that in practice, because the law is not being followed. The donor's wishes are not being respected. Grieving families are being asked, being put under pressure at a difficult time to make a decision that is not legally their decision to make. Ultimately the consent rate falls because almost half of the time the grieving families are asked, understandably, they say no.

JENNY BROCKIE: So it makes what happens in that hospital absolutely critical, doesn't it?

STEPHEN TAFFE: It does.

JENNY BROCKIE: Regardless of what you have said. Kevin Rudd, I know you have identified this, you have identified that 58% of Australian family do not consent to donating a love's ones organs, even if that person is on the register. Should families be able to override a donor's wishes?


KEVIN RUDD: People often talk about the Spanish model which is often called an opt out model - that is everyone's organs are there to be donated unless the family, or the person I should say, opts out. The truth is in Spain it still means that the family has to consent in practice.

JENNY BROCKIE: The family still gets asked?

KEVIN RUDD: Yeah, yeah, and the same here. The point I was going to make is this. Why, therefore, is the public advertising campaign we have just seen on television so strong on the question of talk to one another about it before the stressful moment comes, is that that is where it is headed. So this is a business which is dealt with prior to the crisis occurring. The other thing which Catherine quite rightly has done as Government Parliamentary Secretary is audited the effectiveness of that campaign.

One of the results of what we have done there is that now - correct me if I am wrong - 60 or 70% of families now know that their consent has to be provided. That is the first step in a long process of reform. On this organ reform - organ and tissue reform process in which we are engaged in, it is a $155 million program over four year, it continues into the future. It is 200-230 staff in 70+ hospitals now, explicitly dedicated to this staff. $5 million has been spent on public awareness and the whole point is to get the ball rolling. Mark is right, that is just stage one. Stage who is what does brain death mean? What does this form of engagement mean? I tell you what it would not start unless we got everyone convinced of the fact that they as a family decision is finally taken into account.

SOPHIE BARTHO: That the first time I have seen that campaign, and I am left with the message that - talk about it because ultimately it is the family's decision. That is the take away I have from that campaign.

KEVIN RUDD: That is the point of the campaign.

SOPHIE BARTHO: But you are saying legally it is my decision, if they are my organs and if I say I want to donate my organs it is my decision, but the campaign is telling me it’s the family’s.

KEVIN RUDD: It would be a brave hospital in Australia that went to the High Court and said, 'by the way we ignored the family, we just got a ripper bonzo’ OK.

JENNY BROCKIE: Julian in Oxford, we have to wrap up but I just wanted to know what you think about this and of the families being asked?

JULIAN SAVULESCU: They have no legal authority and nor do they have any moral authority. If I consent to have an operation my family cannot override that consent and in this case we are not talking about consent for an operation, we are talking about consenting to saving four, five, six people's lives. On what basis should other people override my consent to save five people's lives?

Kevin Rudd and others have talked about getting as good as Spain - Australia should do better than Spain. We should move to an opt-out system but not involve families in the consent process. We could choose to do that with a stroke of a pen tomorrow and get much higher rates of organ donation than is available even in Spain. But we choose not to, so we consign a thousand people per year to death, when we have in our hands the means to save their lives, instead we choose to bury and burn those organs.

JENNY BROCKIE: We have to wrap up.

KEVIN RUDD: I have to have a 30 second response. If you did that, the number of people who would rule out organ donation would go up through the roof. And that is not empirical.

JENNY BROCKIE: We are going to have to wrap up but we can keep talking about this online. Mark, I wanted to ask you this mainly because you are here on the waiting list, if there is one thing that you could do to change the system at the moment, what would it be? What do you want to see happen now?

MARK COLVIN: I want a national and thoroughly integrated and I don't think it is at the moment. As I say, it is State by State. There are big differences and I don't think that is right. I mean, this is a Commonwealth of Australia. Commonwealth. We are all supposed to be in the same boat. It is wrong that Victorians have seen this sudden spike because probably they have done things well. We should all be there.

JENNY BROCKIE: OK, we have to leave it there. We can keep talking online and we will. You can keep talking to some of our guests on the live chat, Catherine King and Dr Yahya Shehabi and Kerri. If you are on our eastern States jump on the website and click on the link.