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3rd May 2006
Human Tissue (Organ Donation) Amendment Bill
Dr JACKIE BLUE (National): I move, That the Human Tissue (Organ Donation) Amendment Bill be now read a first time. It gives me great pleasure to speak to the first reading of this bill, and at the appropriate time I intend to move that it be considered by the Health Committee. I say to my colleagues that there are many examples of laws passed in the House that improve outdated legislation, make the lives of New Zealanders easier, or make the work of Government more efficient. But bills that can claim to improve the quality of life or save the lives of New Zealanders are few and far between. This bill is one of them. I would like to acknowledge Andy Tookey, who has lobbied for change for over 4 years. This is Andy Tookey’s bill.
The Human Tissue (Organ Donation) Amendment Bill, when passed into law, will allow for an opt-on, informed consent register where individuals can indicate which organs they wish to donate, and can elect whether the organs are for therapeutic use or for the purposes of medical educational research. There is provision in the bill for those people who wish to register a clear instruction that they do not wish to be an organ donor under any circumstance. The bill also allows for registered donors to change their minds and opt off at any stage. This can be done in writing or orally in the presence of a witness. The bill also, importantly, allows for the wishes of the organ donor to be paramount, and because the informed consent process is rigorous, this means the donor’s wishes are clear, witnessed, and have legal status.
The bill makes provision for both brain-dead and non-beating heart donors, whereby the organs are removed after circulation has ceased. Importantly, provision is also made for public education regarding organ donation. Countries with established organ donor registers that have resulted in an increase in organ donors link their success directly to education and publicity.
The call for change has been evident for over 4 years. In 2002 Andy Tookey and 1,169 others presented a petition to Parliament that requested a review of organ donation practices. The Health Committee tabled reports in November 2003 and October 2004 that requested urgent action to improve New Zealand’s organ donor shortage and provided information on how an organ donor register might work. Our donor rates have dropped further since the Health Committee reported back to Parliament.
Contributing to the problem is the fact that there are fewer brain-dead patients as a result of medical interventions, and fewer people have suffered brain injuries and brain haemorrhages. There is also a greater demand for organs. The threshold to go on a waiting list has been lowered, and organ transplantation is now an option for more and more illnesses, for which it was not contemplated a decade ago. New Zealand is facing an epidemic in diabetes, with the numbers of people on renal dialysis and those requiring kidney transplants set to increase dramatically. The number of people who need a liver transplant is expected to double over the next decade due to liver disease that will result from the 25,000 people with chronic hepatitis C and the 50,000 people with chronic hepatitis B infections. Since 1998 the New Zealand Liver Transplant Unit waiting times have doubled, and the waiting list mortality rate is now 32 percent. There are fewer transplant operations being done; the 2004 figure of only 105 was the lowest since 1996. Over 350 people are currently on a waiting list for organ donation.
Kidney dialysis costs between $22,000 and $45,000 per year per patient. The savings to the health budget from performing kidney transplant operations is considerable. In 2004, 1,770 patients underwent renal dialysis, and 43 percent of those patients were Māori, PacificIsland, or Asian. Māori are overrepresented in those statistics, but for cultural reasons they are reluctant to be donors. When it comes to tissue matching ethnicity does matter and in organ transplants Māori are under-represented. I hope that Māori, as a result of public education and debate amongst themselves, will consider becoming donors.
It has been estimated that one organ donor can save the lives, or improve the quality of life, of between seven and 10 people. Clearly, even a small increase in organ donation rates would save the country in both human and financial costs. We therefore urgently need to raise the organ donor rate in New Zealand. The number of organ donors in New Zealand—only 40 in 2004—was one of the lowest in the Western World, but last year it dropped to just 29. That equates to around 6.7 donors per million of population. As a comparison, Spain, at the other end of the scale, has 39 donors per million of population, the USA has 22, the UK has 13, and Australia has 10.
It has been shown that donor rates can be improved by ensuring that all possible potential donors are identified, that contact is made with the donor’s family in an appropriate way, and through enhanced public education. That has been the experience of South Australia, which has had a voluntary opt-on organ register since 2000. In 2004 its donor rate was 20 per million, which is double that of the Australian-wide donation rate of only 10 per million. Last year, because of medical intervention in brain injury patients, which resulted in fewer brain-dead patients, the rate dropped to 13 per million, but this was still double New Zealand’s rate. South Australia links its success to a team approach of identifying donors, working with families, and having a consent register that gives clarity to the donor’s wishes. The model uses medical donor advisers—intensive care - trained doctors—who work with specially trained organ donor coordinators. Importantly, they work as a team. The success of the South Australian model is such that Western Australia and Queensland are adopting it as well.
With the proposed new Human Tissue (Organ Donation) Amendment Bill, which provides for the opt-on organ donation register and a public education programme, there is a very real expectation and hope that the vast majority of organ donors, because of the process involved when signing up, will inform their family and make their wishes and intentions crystal clear. I believe the organ donor register will help grieving families and the intensive care team by providing clarity in an emotionally charged and fraught situation.
By voting for the bill to go to the select committee, members will be supporting the vast majority of New Zealanders who also want change. There is growing evidence that members of the New Zealand population are not happy about the ability of others to veto their wishes to be donors. In 2004 Colmar Brunton ran a poll asking that very question—whether family members should be able to veto one’s wish to be a donor. A resounding 80 percent said no, they should not. New Zealanders want autonomy over their bodies in death as they have in life. The proposed Organ Donor Register will serve this purpose.
I say to colleagues that I have been heartened by the positive feedback from New Zealanders, and by comments made in newspaper editorials supporting this bill. The “tick a box” licence is not informed consent and is meaningless. In the face of declining organ donor numbers internationally, there is a steady stream of countries implementing organ registers. In the USA, 43 states have a law stipulating others cannot override donors’ wishes, and so do some 26 European countries. Some countries have presumed consent registers where everyone is presumed to be a donor and must physically opt off if they do not wish to be. I urge all members not to invent the wheel but to let all those countries that do well in organ donation become our model for a better system that would not only respect individuals’ wishes and be kinder to grieving families but would save the lives of those who would die needlessly.
I have canvassed the opinions of intensive care doctors and transplant surgeons who have concerns about a donor register. I totally respect the important work they perform in the most difficult of circumstances but I believe this matter should be democratically debated in the Health Committee. I welcome the comments of colleagues in the debate. The Human Tissue (Organ Donation) Amendment Bill has been drafted so that it is a vehicle that can be amended and refined. I urge members to vote for the first reading of this bill so New Zealanders can have that debate and input at the Health Committee.
Hon PETE HODGSON (Minister of Health): Labour will happily support Dr Jackie Blue’s Human Tissue (Organ Donation) Amendment Bill going to a select committee, and I congratulate her and the co-author, Mr Andy Tookey, on the efforts they have made to get us as far as this. We have reservations, and I shall come to them, but before I do so it seems to me appropriate to say that from my knowledge of organ donation—which is modest but increasing—the member who has just resumed her seat has pretty much canvassed the issues. I think she has canvassed them fairly, and I want to acknowledge her contribution and thank her for it.
I shall certainly not be repeating international comparisons and other matters. Instead of that, it seems to me that my contribution is best limited to mentioning a few things to do with where we are heading as a Government and how the Health Committee may wish to manage the bill when it comes before it.
The Government has, of course, its own initiative in respect of a register. It was a pre-election position for us. Indeed, before the last election a policy was developed for that purpose. I came upon the policy not as the Minister of Health but as the Minister of Transport, because there was hope, at some stage, that we would be able to use existing registers to save a little bit of money. It turns out that the savings are not as we had hoped they would be. That was the point at which I came upon the issue and the good and bad aspects of it. Certainly, the Government joins with the member—and I am sure any other member of this House—in saying that anything that can be reasonably done to improve the organ donation rate of this country across a variety of organs, for the reasons that the member has laid out, is to be supported and we certainly support it strongly.
As to timing, I do not actually know when this human tissues bill, which the Government has in mind to replace the Human Tissue Act 1964, will be introduced into the House, but I do know that it will not be long. I suspect that in about 4 or 5 weeks Cabinet will again look at the next part of the process of getting this bill prepared for introduction, and it is my hope that it will be introduced and, if possible, passed in the 2006 calendar year. We shall see. That therefore influences perhaps—though it is for the select committee to decide—how the committee manages the legislation when it comes before it.
There was a time when I was in Opposition that I was annoyed by the lack of progress on animal welfare legislation. I wrote animal welfare legislation—or, more honestly, had it written for me by the person who had written the Government’s version of the legislation, which the Government had then not proceeded with—and like the member, Dr Jackie Blue, I won a ballot and introduced it. As is the case for the member, the Government then said it had legislation coming along, too. In that particular instance, the Government changed its mind and decided that discretion was the better part of valour. In the end, it was good legislation, and it is on our statute book now. The Government bill of the day took precedence because it was broader and because—frankly—it was a little more modern. It may be—although I do not want in any way to be seen to influence the select committee—that the select committee decides on a similar approach. That is up to it, but in any case my office would happily advise the select committee on the progress of the Government’s bill any time the select committee wishes it.
I hope a range of opinions will be forthcoming; I actually have no doubt that that will be the case. I am sure the aforementioned Mr Tookey will be interested, and I am sure the other person who was quoted with him in the New Zealand Herald on Monday, the vice-president of the Australia and New Zealand Intensive Care Society, Dr Peter Hicks, along with other intensivists, will be in front of the Health Committee. They will want the committee to take part in a very serious and interesting debate that the member herself has referred to on the issue of the primacy of the individual to have a say over what happens to his or her body after death. It is an issue that is played out in cremation and autopsy, and it is now about to be played out in organ donation.
The Government has reservations about that aspect of the member’s bill and wants to put those on the table now. Government members are very happy for the select committee to examine the detail. We are particularly happy for the select committee to look at international evidence. As committee members look at all of the international evidence in Europe, and so on—as the member has already alluded to—I ask them also to please contemplate looking across the Tasman, where, I understand, Australia is now beginning to have experience of this kind of legislation. I ask them to try to divine what it is about a register that makes it work or not work. There is the possibility, as the member suggested in her remarks, that it is the surrounding education that matters. That is to say, I ask members not to go for the thing that is easy to do—to get the register up and say that that is it, and that they have done their bit—but to please work out what it is that makes some countries’ registers more successful than others.
Certainly, our organ transplant rate is amongst the lowest in the Western World. In many aspects of our health system we are usually in the top half of any group of countries. In this particular measure, we are second to bottom, according to my figures, with Australia coming in last. So we do have an issue, quite apart from the fact that we have the epidemic of kidney and perhaps liver complaints coming on, for the reasons that the member has pointed out.
Those are my remarks. We want to support the legislation. I personally offer to the member my acknowledgment of, and congratulations on, her work. It is a really good example of members’ legislation in action. We are delighted. We have serious reservations about aspects of the legislation. The Government has its own legislation coming forward, and it may be that the two bills could or should be merged. I ask the select committee members, when they are deliberating on the bill to please—for my sake, as well as for the sake of the rest of the country—pay close attention to what they think are the key drivers behind organ donation rates in other countries; what cultural or educational programmes, for example, what other influences, exist in those other countries that result in such a great disparity in the organ donation rates, and that have ours running second to bottom.
BARBARA STEWART (NZ First): New Zealand First supports the intent of this bill and will support its passage to select committee. We must congratulate Dr Blue and Mr Tookey on their efforts to increase the awareness of organ donation, and on their bill that together they have brought to the House. In New Zealand First, we are very aware that those countries that have followed this very same line have found that organ donation rates did not increase significantly. I was interested to read in the New Zealand Herald recently that doctors believed that this bill is unworkable and they intend to oppose it for a whole variety of reasons, which we will, no doubt, find out over the next few weeks.
However, by voting the bill through to the select committee the public of New Zealand will have the opportunity to comment on the bill and suggest appropriate amendments, which we need them to do. It is a fact that donor rates are declining internationally, and the New Zealand rate of organ donation is no exception to this trend. Fewer organ transplants are being carried out here, for a whole variety of reasons. So it is not only a New Zealand problem; it is an international one. As the Minister has said, all countries are looking at ways to improve the rate of organ donation, and this type of legislation may be one of the ways that helps to raise the profile of organ donation and, perhaps, result in an increase in various organs for donation. We know that the 2004 figure was very low, as it has been in many years, and the Minister has said that our rate is among the lowest in the Western World.
We were pleased in New Zealand First to see that the bill discusses setting up an opt-on register. We believe that most people, when they tick the donor box on the driver-licensing application, believe they will be a donor, but this is actually not the case, unfortunately. There is no link between the land transport and the health databases. So one must wonder why people are asked during the driver-licensing process about becoming a donor, when their decision cannot be enforced. The proposed register in this bill allows people to indicate which organs they wish to donate and whether these donations can be for therapeutic use, or used for medical education or research. We say that people need to be aware of the necessity of communicating their wishes for donation to their families.
I note that a national donor register would make this unnecessary, but it still can come as a shock to a grieving family that their loved family member wishes this course of action to occur. I am very aware, too, that at this point in time family members can and do overrule the dying family member’s wish.
Aligned to the rate of organ donation is the need for further education of the public in this area. People do need to know more about organ donation and the uses various organs can be put to. Perhaps this bill may lead to increased donor awareness and give people the right to have their wishes respected.
As I said earlier, research from overseas indicates that this type of legislation has not resulted in significant increases in donor rates, but we must acknowledge that some action is better than no action. I am reminded of the saying that failure is not the worst thing in the world, the very worst thing is not to try.
The medical ethics surrounding organ donation will need to be carefully explored during the select committee process. We must be very clear about these, as the grieving family definitely has rights too. Hopefully, the medical profession will be participating in the select committee process to guide our deliberations in this area. New Zealand First acknowledges that this bill is well meaning, and there are issues surrounding organ donation that do need some clarification and public discussion. So we will be most interested to hear the views of the submitters to the select committee.
SUE KEDGLEY (Green): The Green Party would like to congratulate Dr Jackie Blue and Andrew Tookey on bringing this important issue to the House. It is really only those families with family members who require organ donation who know just how important this bill is. I think it must be terrifying to be someone like Andrew Tookey. He has a child who, he knows, will need an organ transplant, and he knows that there were only 29 organ donors last year. He knows too that there are literally hundreds of people waiting—I think about 350 people in New Zealand are waiting for a transplant; they are waiting mainly for kidneys but also for other organs—that some of them are dying because they cannot get an organ, and that their lives would have been saved if one had been available.
I think the key issue in this whole debate is the fact that more than 1 million New Zealanders have indicated on their driver’s licence that they are willing to donate one of their organs, yet only 29 people were donors last year. Why is there a discrepancy? What is going on? When more than 1 million New Zealanders say they are willing to donate an organ, why do we have one of the lowest rates of organ donation in the world? Of course, as the Minister has indicated, it is an issue we must address because we will need more and more organs, particularly kidneys, if the epidemics of type 2 diabetes and obesity, etc. continue.
The interesting thing is that Andy Tookey brought this issue to Parliament about 3 years ago, I think. The Health Committee considered it and wrote a report. We had a whole lot of recommendations, and basically the Government turned down most of them. I suspect that, really, this bill is implementing a number of our recommendations—for example, the establishment of a national donor register to replace the current driver’s-licence system. I personally feel frustrated at the length of time this has taken. We discussed this issue, and all members on the Heath Committee agreed that it was urgent and that it was a priority, yet nothing seems to have happened. So I am absolutely delighted that this bill will force the Health Committee to deal with the issue. I hope that we can deal with it as expeditiously as possible, because, frankly, I am frustrated at the seeming lack of action despite the petitions and the recommendations that we have already made.
We have to respect cultural values. That must be inherent in the bill. We have to incorporate tikanga Māori. We have to acknowledge that whānau have a very significant role. We have to find a way to accommodate all of that. Yes, concerns have been raised about whether the wishes of the donor should be able to be overturned by the family. We will have to wrestle with those issues, and we will hear submissions on that.
The other problem is that at the moment it is not clear what a request on a driver’s-licence application form exactly permits. It states: “Would you be willing to donate organs in the event of your death?”. As Barbara Stewart has pointed out, what does this mean—for what purpose? Would it be for a therapeutic purpose? It could be interpreted as giving permission for one’s organs to be used for medical research and education, which some people may not be happy about, at all. So, frankly, the driver’s-licence system, as we all agreed many years ago, does not work, and we need to scrap it. We need to set up an organ donor register, and we need much more publicity. Those are the sorts of things that are proposed in this bill—and were proposed to the Health Committee a number of years ago—and we hope that this time it will result in the select committee, or the Government, coming up with legislation that will address the situation and we will not have 2 or 3 more years of delay. The Green Party is extremely happy to be supporting this member’s bill, and congratulates Jackie Blue and Andy Tookey on their work in bringing it to the House.
TARIANA TURIA (Co-Leader—Māori Party): It is not unusual for us to receive calls regarding the deaths of family members. Two days ago I got a call that a whanaunga of mine not in her 60s yet, with a history of diabetes, had passed away. Our people are overrepresented in cases of diabetic renal failure, with rates up to 10 times those of non-Māori. One of the greatest tragedies of our time is that the rate of organ donation to prolong the lives of so many of our whanaunga is low. A statistical analysis by the National Transplant Donor Coordination Office showed that only six Māori families consented to organ donation between 1988 and 1996, from a total of 290 families. Given the prevalence of kidney disease in our population and potential issues around tissue matching, this low rate of organ donation seriously affects Māori people.
We are very aware that the current demand for tissue-compatible Māori organs exceeds current supply. This is a huge issue for our communities, and it is a dialogue that the Māori Party very much wants to continue amongst our people. We welcome and will seek further opportunity for meaningful debate around how health and other professionals deal with the removal, retention, and return of body parts, and with organ donation. We mihi to Jackie Blue, for her courage, and to that member and to Andy Tookey for their initiative in trying to address the donor shortage problem in New Zealand.
But the bill being discussed here today goes far further than many of our people are willing to consider. Many Māori are very uncomfortable with the concept of organ donation following death—the tūpāpaku is tapu, and to interfere with it in any way is abhorrent to our culture. Human tissue organ donation is a massive issue for us, and it raises huge questions about issues of protection, informed consent, tangata whenua control of information and medical processes, access to information and medical care, and, most of all, cultural respect.
The issue of the removal of body parts without seeking informed consent has a heavy history for Māori. Controversy arose in 1991 regarding the removal of organs from Māori bodies either to determine the cause of death or for research or transplant purposes. Some cases dated back to 1963. In many cases the removals were not necessary to determine the cause of death, as, indeed, I spoke about last night in reference to the Coroners Bill. The practice broke tapu and breached Māori cultural protocols, and many whānau were traumatised, suffering unacceptable delays before the tūpāpaku were returned.
I raise another way of looking at this issue. It is one that the Māori Party has been talking about in our communities, given that people spoke so strongly against the bill when we presented it to them. We raised the issue of live transplants between whānau members. That actually seemed to catch on with our people. They were quite accepting of the idea that it is really important that we take responsibility within our whānau to ensure the wellness of our whānau and that we give life back to our own. Despite the fact we are not voting with Jackie tonight, I thank her, because it is probably not an issue we would have otherwise discussed. I thank her for raising this legislation and, in a way, for creating the opportunity for us to take the issue back to our people.
Ethnicity is said to be an important aspect in respect of tissue matching, but I tell members of a recent situation when a whānau were looking for a live donor amongst themselves. In fact, the only match was the Pākehā sister-in-law. The transplant took place, but it was not one of the whakapapa family who gave the donation. There are some very important stories for us to learn from.
In taking this issue to the people we learned of the desire of our people to know more about their legal rights and requirements in relation to organ donation and post-mortems. We heard many concerns that our people have about the process, and the aspiration of wider whānau members, such as kaumātua and kuia, to benefit from the information. We as a political party wanted to send this bill to a select committee, but ultimately our commitment to our constituency means everything, and we must be true to them. Over and over again the bill was rejected outright. Nā reira, ka nui te mihi ki a koutou, tēnā koutou, tēnā koutou, tēnā tātou katoa.
JUDY TURNER (Deputy Leader—United Future): I rise on behalf of United Future to say that we will gladly support the first reading of this bill. I congratulate the sponsor, Jackie Blue, and, of course, I congratulate Andy Tookey on the commitment he has shown to this cause.
I have to say that I am a little bit disappointed that the Māori Party has chosen at this stage not to offer support. I think that supporting a first reading gives a great opportunity for ongoing dialogue, not just within this House but outside. I understand the cultural sensitivities around this matter, but I also understand that all cultures are dynamic and responsive to phenomena, and often adjust over time. I believe that this discussion is an important one because of the fact that Māori are so overrepresented in the group that will often need organ donations.
This issue is not unfamiliar to me. I personally have had some ethical dilemmas in my own life regarding certain medical procedures of in vitro fertilisation. I know that the technology has moved on a lot, but years ago, prior to when I was considering having children, I looked very seriously at this issue and wondered what would happen if I discovered I had a fertility problem, because I had some ethical dilemmas around the processes that were available at that time. I decided for myself that if I discovered I was going to have difficulties, I would have to live with those, because I could not ethically condone the practices of in vitro fertilisation of that time.
I mention that because on this matter all members need to ask themselves, with real honesty and regardless of their concerns, what their opinions would be if they or one of their close family members were put in a situation where an organ donation would save a life. All of us need to think that through very carefully. I realise that it is not just the Māori community that has some concerns around this. Other communities in New Zealand share some reservations about what we do with body parts. I respect those views, but I also think that this technology provides us with an opportunity to think again and to re-evaluate, together as a community, what this means.
This bill is long overdue. For years we have put up with the silly situation whereby upon going into an Automobile Association office to sign up for a driver’s licence, we suddenly, often unexpectedly, are faced with the chance to tick a box and say whether we are prepared to be a donor. Often we have not given it any thought at all, and we make a snap decision. I know of many people who did not tick the box because they could think of parts of their body that they did not want to donate, and other parts that they would be happy to donate. They did not get that option on the form, and therefore they ticked “No”. The other aspect is that two very unrelated things—a driver’s licence and an organ donation system—are linked together, and that very matter was one of the things the select committee looked at when Mr Tookey petitioned us.
One of the things that I suggest would be an interesting consideration would be to look at the current blood donor system. People go in to give blood in donation mode. They may be very open at that stage to considering organ donation. When people have decided to be a donor, we must follow up that offer with some really good information and encourage them to spend time talking to their families. Certainly, since Mr Tookey brought his petition I have done just that with my family. We have discussed organ donation thoroughly. I have expressed my desire to be an organ donor. I have checked with my children, who are now adults, about what their desire would be if something befell them. We have talked about it really clearly, and we all now know where we stand on that.
I also mention in passing that one of my roles in my previous life was as a funeral celebrant. So I am very well acquainted with the trauma and emotional baggage that goes on when people have lost someone very close to them, and I know how difficult it is to make a decision. We agree with surgeons that nobody wants to force a family who are grieving to go ahead with the donation against their will. That is why it is really important to have this discussion. We will support this bill. We think some changes need to be made, but we congratulate the sponsor of the bill, and we congratulate Andy Tookey. It is great that this discussion can now begin.
Dr PAUL HUTCHISON (National—Port Waikato): It is very encouraging to hear that the Minister is keen for an open and collaborative discussion on how we in New Zealand can increase organ donation. I certainly also hope that during the select committee process the Māori Party’s views will be well made to and better understood across the various parties in the House. But, firstly, I acknowledge the initiative and work of my colleague Dr Jackie Blue and congratulate her on the way she has taken on the responsibility of this bill. I also acknowledge Andy Tookey, who is sitting in the gallery. He firstly, with dogged determination, brought a petition to Parliament, and then he consistently supported with ardent fervour this organ donation bill coming into Parliament.
Dr Blue has clearly outlined that donor shortage is a major problem in New Zealand, and that with an ageing population and an obesity and diabetic epidemic in the country there will be even greater demands for donor organs into the future. Unless new techniques such as may occur from stem cell research become a reality, demand will continue to outstrip supply.
I also acknowledge the altruism of individuals and families throughout New Zealand who are willing to donate their organs to help others. It is classic Kiwi goodwill that so many are available. The tragedy is that so few come for donation in New Zealand. It is clear that many New Zealanders know little about the complexities and subtleties, legal and technical, associated with organ donation. One thing that I think must never occur is the commercial aspect to donation, apart from compensation for expenses. Coupled with the donor’s generosity, it is fundamental to acknowledge the extremely sensitive, demanding, and challenging work that doctors, nurses, and intensivists—transplant specialists—undertake on a 24-hour basis, 7 days a week, to enable the process of organ donation to proceed effectively when organs are available in New Zealand.
The House should be reminded that the 2004 report of the Health Committee recommended to the Government that it proceed to investigate the option of an indicative register that records organ donation wishes, independent of its review of the regulation of human tissue and tissue-based therapy. Dr Stephen Streat, a specialist intensivist, has taken on the extremely demanding job of clinical leader of Organ Donation New Zealand. There is no doubt that it is hugely important, if we are to achieve a successful organ donor system in New Zealand, that the views of all participants in the process are thoroughly understood and listened to so that it runs smoothly. There needs to be a framework of cooperation, not a framework of conflict.
I understand that in the United Kingdom there has been antagonism between the transplant and the intensive care community. However, in New Zealand under the present regime, indicative as it is, there is a highly collaborative relationship that leads to the smooth running of this very technically complex process. It has been impressed on me that the quality of the processes developed must be extremely high, as any mistakes are liable to be magnified. New Zealand does have a legacy of failures around informed consent, dating from the National Women’s Hospital cervical cancer inquiry, the Gisborne inquiry, the GreenLaneHospital heart library, and the neonatal physiotherapy saga. Therefore, it is vital that the lessons learnt from these extremely damaging episodes of New Zealand history are taken on board when it comes to developing the regulatory framework of a successful donor system, and particularly the parameters around informed consent.
I end by saying that Dr Jackie Blue’s bill will serve as a very important template to generate informed discussion about organ donation. Hopefully, after going through the select committee process, it will achieve a regulatory framework that successfully serves the organ donation needs of the New Zealand community and will be evidence-based.
STEVE CHADWICK (Labour—Rotorua): I am pleased to take a call tonight and I congratulate Dr Jackie Blue on her initiatives in bringing this bill to the House. However, I have to say that I have great reservations about it, and I am glad to have the opportunity to mention them.
I was chair of the Health Committee when we heard Andy Tookey’s petition, and we were all very moved. I am glad he is here tonight to see this bill coming to the House. I think this bill will certainly stimulate and increase discussion about the position of organ donation in New Zealand.
We were very careful. We took Andy’s petition very, very seriously because we are worried about the organ donation rate in this country. We came up with eight recommendations, and not one of those recommendations was a legislative option. I remind all members that after we had heard the petition, not one of our eight recommendations suggested a bill. We were focused on ongoing education campaigns. We were looking at a national public awareness campaign. We knew there needed to be a lot of discussion with Māori over the issues of lore, not law. We knew that we were a long way away from increasing that level of awareness. We instigated the establishment of Organ Donation New Zealand, and I was really thrilled to see that happen. My colleague Sue Kedgley said that nothing has happened, but Organ Donation New Zealand is now set up. It is now moving to develop policies and protocols to increase awareness of the need for organ donation.
I admit to some frustration with the New Zealand driver’s-licence system, and the farce that it is to tick the box to be registered as a donor. I sought approval from Cabinet to draft a member’s bill. Off I went, with a legal drafter, to see the intensivists at AucklandHospital. I was told very, very clearly that no matter what is on the driver’s licence and on a register, they will never look at that first, because they never want to be put in the position, with end-of-life care, of looking like they are harvesting organs. They want a family to reach its own conclusion in respect of end-of-life care. They do not want it to look like they see the tick on the register then go in to harvest the organs. We have to respect that. They are the intensivists whom we all depend upon when we have a loved one needing end-of-life care. I came out of that meeting with those people who now run Organ Donation New Zealand and decided that I would not draft a bill. That was after doing a lot of research on the international figures.
I think this Government has gone about this issue the right way. It is about incremental change. We now have Organ Donation New Zealand. It is progressing. We have also developed a human tissue bill. That has been done. We are waiting for the bill to be introduced, as the Minister Pete Hodgson said. Developing that bill was an incredibly important step, because when we went out on consultation, with a discussion document, we received an enormous response from people around the country. They too did not understand the complexity around organ donation. That bill will address the issues that are in Dr Blue’s bill. I think it will be interesting to see which one comes first and how the Health Committee interfaces the approaches.
I do not believe that legislation is the right mechanism at this stage to increase organ availability. I think we need to look at the issue of informed consent when we get our driver’s licence or when we register with a primary health organisation. That is the time to have a discussion with the family doctor about what it means to be a donor, and whether a donor can give some organs and not others. We can then go back and make our families very aware of our wishes. That is indicative consent that the family will give. I do not like the fact that the family has no power of veto. I do not think that will help towards the yield of organs, which we want in order to increase the numbers on the Organ Donor Register.
It will be interesting to see how the Health Committee looks at the human tissue legislation and at Dr Blue’s bill. I urge the Health Committee to invite those intensivists to participate, and also to look at the very interesting opinion that is held at the moment by the New Zealand Medical Association, which has a contrary view. The committee has the difficult task of putting those views together, and I wish it well.
Dr JONATHAN COLEMAN (National—Northcote): It is my pleasure to speak today in support of Dr Jackie Blue’s Human Tissue (Organ Donation) Amendment Bill. I also acknowledge Andy Tookey’s presence here. I know he made the trip down here before the adjournment to hear this bill. We did not get through all the business that night, so it is a sign of his dedication that he is back here again.
I believe that this bill will go some way to addressing the pressing problem of a shortage of organs for donation in this country. As such, it really does stand to benefit greatly the people of New Zealand. It will represent a significant change to the current system for donor arrangements. The bottom line is that organ donation saves lives. New Zealanders deserve the right to have their wishes respected in death, including the decision to donate an organ.
Many New Zealand families have been enormously comforted in times of distress by the knowledge that a dearly loved family member has been able to give another human being the chance of life. What is more, the long-term success rates for transplant surgery have increased dramatically over the past few years. Now, 5 years after gaining a new heart, 75 percent of recipients are still alive, and 5 years after receiving a new liver, 90 percent of people are still living. From just one donor, as many as 10 people can directly benefit and drastically improve their quality of life or be given the chance of continued life. Organ donation has positively impacted on the lives of many, many New Zealanders and their families. However, it is my belief that the current Act is not working and that New Zealand really does need to proactively address why our level of organ donation is so low, so that we can find a solution to this problem before more people die while waiting for a donor organ to become available. In 2004 approximately 400 New Zealanders were waiting for a donor organ, and there are 350 at the present time. In 2005, 19 people died while waiting for a donor organ, and with a diabetes epidemic upon us, the demand for donor kidneys will further outstrip the number of organs available.
Interestingly, around 1.1 million New Zealanders have said yes to organ donation on their drivers’ licences. In many cases, though, when someone in this situation becomes eligible to donate his or her organs, family members veto such a request. This is one of the major issues that Jackie Blue’s bill seeks to address. Although only a small number of people who die each year are medically suitable to donate their organs, on average 43 percent of these people are stopped from donating due to the veto of the family. Indeed, it is well known that putting “donor” on one’s driver’s licence is not a legally binding way to become an organ donor. This bill would make a person’s stated and documented wish to donate legally binding.
Another area of contention in the current Act is the lack of a national register for organ donors, as well as there being no choice as to what organs a person can choose to donate. For an organ donation system to work effectively, a national register such as the one Dr Blue proposes is necessary. This is because such a register would include non-drivers, unlike the current system, and would allow people to specify which organs they would and would not like to donate once they are deceased. As well as this, they would be given a choice about what their organs would be used for—for medical research or for donation to a fellow human being.
In 2004 the Health Committee considered the issue of organ donor rates and what could be done about increasing them. Although there have been efforts to act on many of the committee’s recommendations, it is clear that more impetus is required. New Zealanders deserve the chance for this bill to be examined at select committee level. There is a groundswell of public support out there for this issue to be examined. The articles, letters, and editorials in our newspapers are testament to this. We are under no illusion that there will not be difficulties in enacting what this bill proposes, but we would be letting down the people of New Zealand if we filed this one away in the too-hard basket.
In summary, the Human Tissue (Organ Donation) Amendment Bill seeks to address the shortcomings of the current system. It is a step in the right direction of addressing a major problem for our nation—our terribly low organ donor rates. Any bill that seriously attempts to do this should be given the chance to be considered in detail by this Parliament. We owe that to the people.
Dr JACKIE BLUE (National): I would like to thank all members for their comments. I am grateful there appears to be support for this bill to go to the Health Committee. I thank the Minister the Hon Pete Hodgson for his input, and I agree that we must get it right. The Health Committee must look overseas to find examples of how the legislation works. I believe the key will be a register that gives clarity, education, and teamwork, and I agree with Steve Chadwick that Organ Donation New Zealand has started that process already. When I met with Steve in the street, I was very impressed and very pleased to learn that that teamwork is happening in the intensive care units around New Zealand.
I acknowledge Tariana Turia. I respect the Māori Party’s position, and understand the cultural difficulties it has with donations from deceased donors. I am very pleased that as a result of this bill there has been discussion and debate with Ms Turia’s people, and that Māori are now talking about live donation. I note in yesterday’s New Zealand Herald that a Māori health worker, Mr Phil Heremaia, will go on the road in a bid to increase donor rates among Māori people, and I think that is a very positive step.
In conclusion, I thank all members for their comments. The bill will be a challenge, but it is one that the Health Committee must meet, as we must find a way through this issue.
Bill read a first time.
Bill referred to the Health Committee.
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Katie Tookey's story is on video.
Kiwis like Katie depend on 'the gift of life'.