The NZ Organ Donation System
Currently in New Zealand, the only way to inform everyone of your wish to be an organ donor is to register on your driving licence. Presently 42% of drivers are listed as donor on their licence.
(Though you can bet 99% of them would accept an organ if they needed one!)
An overview of the problem
Donor shortage is a problem worldwide, not just in New Zealand.
The main reasons for this shortage are that there have been so many advances in medicine that transplants are now a viable option for many people; and that there has been a decline in the numbers of people dying in the 'right' circumstances.
Even if you have ticked "donor" on your driver's licence application, and told your family that you want to be a donor, that doesn't automatically mean you will be one.
For example, if you die in a car crash it is unlikely that you can be a donor. The entire organ donor population comes from the Intensive Care Units. This is because oxygen and blood need to be pumped through the organs to stop them degenerating after death.
Nowadays, with the safety devices in cars, the chances are that you could walk away from a crash that in previous times would have caused severe head injuries resulting in later death. On the other hand, if the crash is so severe that death occurs at the scene organ donation is not an option.
A recent new Zealand death audit showed that only 38 people out of a possible 104 were donors in 1999-2000.
1 million people have 'donor' on their driving licences.
How does that compare with other countries?
Number of people who became organ donors per million population for 2010 (pmp):
Why is New Zealand at the bottom of the list?
Money -- isn't it always down to that? Money to fund training for doctors and nurses, money to pay for education and public awareness. Though the ironic thing is that it costs over $15 million a year to keep people on dialysis and other hospital care, whereas if the government committed money to education and training they would save much more!
The government has told us that it has no money to fund a publicity campaign, then in the following weeks it announced $156 million of our money going in overseas aid (a total of over 1 billion dollars has gone to overseas aid in the past 4 years), and $175 million on Maori Television... This may be a simplistic view on our part, but put yourself in our position...
Some of the problems...
- Registration is only via the driver's licence. This excludes all non-drivers, including those under age 15.
- Changing your driver's licence before the due date will cost you $31.10
- There is no option on your licence to specify which organs you wish to donate; it's all or nothing. Not being able to specify which organs they would like to donate puts off people from ticking the 'yes' box on their licence. For example, many people we have spoken to ticked 'no' on their licence because they did not want to donate their eyes ('windows to the soul' etc.). But they would have been prepared to donate their other organs.
- Your family can override your wish to be a donor, and (or) override which organs you wanted to donate.
- Organs can only be kept for 4-12 hours after being taken from the donor. Consider that the transplant into a recipient takes approximately 7 hours, then there is the flying time of organs from Australia (we have an organ sharing arrangement with Australia, though in 2001 they sent us 9 livers, presumably because they had no use for them, whilst we sent them 3).
- It is not a user-friendly system or easily accessible. To draw a parallel, if there were no charity collectors rattling tins on the street to collect money for their cause, how much money do you think they would collect if they expected people to voluntarily drive to their headquarters each week to deposit their donation?
- The Human Tissue Act was introduced when the only transplants that were available were corneas and heart valves (1964).
- There is no education on the matter and a lot of misconceptions. For example, there is not even a mention of it on the LTSA Website. The presenter of a television programme (which was discussing this subject) recently suggested that people put their donation wishes in their wills. The only problem is that you have long been buried or cremated before your will is read!
- The 'Greenlane' scandal has almost certainly put us further down the list of world donor rates when it comes to new drivers registering (we can't go much lower) We have not done any effective damage limitation following the Greenlane scandal. Not only that, we haven't been pro-active in restoring confidence.
- People are not encouraged to be donors. They need to drive. They have had no information. They have misconceptions; or, even if they don't, they have to pay for a new licence. It is interesting to note that the donor team at Greenlane is funded through the Auckland District Health Board, although it is expected to provide a national service (and the Health Board is $85 million in the red) .
- Education on Organ Donation: There is none for the general public. Do you remember any when you went for your new licence recently?
- There is minimal state support for 'live’ donors; they have to take this out of their annual and sick leave (two to three months). This does not encourage live donor rates.
- 66 possible donors in 1999/2000 didn't donate, either because they were not asked or because the family refused.
What can be done?
We are told that it doesn't matter if it is on your driving licence or not, as, at the end of the day it is your family who will make the decision as to whether or not to donate your organs. So, it is important that you discuss your wishes with your family.
The only problem with this theory is that people don't discuss their wishes with their family unless it is brought to their attention by a publicity campaign. Before you came to this site, presumably by reading in the press that there is a shortage of organ donors, were you aware of how bad the situation is in New Zealand?
This is why we believe there must be a massive publicity campaign by the government to create awareness. We can't do it alone -- although we are having a good go!
The LTSA presently runs the database, but there is no publicity at the driver licencing centres, no information (or the wrong information), no posters, no explanatory leaflets. You go in and tick the box, "yes" or "no". What sort of system is that?
The LTSA spends plenty of money on TV commercials telling you not to drink and drive, don't speed, don't tailgate, etc., etc. And these ads target people who (mostly) are in charge of their own destiny's. People dying because of a lack of organs are not. Yet the LTSA will not promote organ donation. It's not even mentioned on their website.
"Why?" we asked the Director of the LTSA. In his reply he says:
"...we do this because we are required to" ,or "it’s not our core business", "I can only do...", "I do not have the mandate..." " ...the LTSA is only involved to the extent of its legal obligations" and, finally, "It’s really the health sector's problem." Sounds like the "too hard’ basket to us. Although the existing system could be improved with a little enthusiasm from those involved, it would seem that it would be better to totally start afresh, and take the responsibility away from the LTSA completely.
The Medical Profession
In the recent audit, 35 families were not asked to consider organ donation. As one donor has the potential to save the lives of, or improve the quality of life for up to 10 people, that's possibly 350 lives that will now not benefit from those misses.
As Intensivists and other doctors who work in ICU are the ones who discuss organ donation with relatives, they need to receive education on the entire process of organ donation. This includes the recognition, diagnosis and certification of brain death, physiological support of the potential organ donor, and the interpersonal processes of discussing organ donation with the family and liaison with the donor coordinators. Education also needs to cover understanding of grief, and of human behaviour at the time of bereavement.
There are seminars run on the above. Unfortunately these are not well attended by doctors; attendance is mainly by nurses. Some commentators believe that attendance at these courses should be mandatory for all ICU staff as part of their ICU Diploma.
The audit reveals that 31 families refused organ donation, but it doesn't state how many of the victims involed had previously expressed their wish to be a donor, and if, in fact, their wishes were being overturned by their families.
Although it is inevitable that some will decline for their own cultural or other reasons, it is possible that others declined because of a lack of knowledge of the organ donation process, or some preconceived misconceptions about the process. Public education is the key to this problem.
This is probably the biggest problem to date. Once a system is established to make it easy for people to be a donor there should be extensive public awareness programmes.
Again, there are many misconceptions about organ donation. Recent 'scandals’ have not helped. Likewise, television programmes and movies often portray organ transplants in a bad light. Yet, we have not tried to counter these with damage limitation. In fact, we have done minimal advertising!
As asked earlier, why is there no mention of donation on the LTSA website? Why are there no posters on the walls of the LTSA Centres? Why is there minimal information on this topic when you go for a driving licence?
There needs to be a very intense public awareness campaign to redress the balance of the years of neglect. In the first instance, I personally would like to see an information brochure sent to every household in the country. Box loads of information packs could be sent to every secondary school to distribute to 4th, 5th and 6th formers (our future drivers) at assemblies.
In Canada, it is part of the Health and Physical Education Curriculum. And information packs with videos are readily available for people to do talks at schools and other institutions.
Once the system has been changed to make it easier to become a donor, and the public awareness campaign has begun, the momentum must continue with "success stories" and "feel good stories" about live-saving or life-enhancing transplant operations.
The Ministry of Health advises us that organ donation pamphlets are sent to doctors' surgeries/medical centres around the country. They may have been, once!
As part of our research, we randomly visited 20 surgeries/medical centres, and did not find one which had any pamphlets. These surgeries had many pamphlets on every minor ailment from A-Z (most sponsored by drug manufacturers) but none on the life-and-death issue of organ donation (sponsored by the government).
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Katie Tookey's story is on video.
Kiwis like Katie depend on 'the gift of life'.