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Spare Parts: Where has the $500,000 spent on organ donations gone?

By Jenah Shaw | 24 Sep, 2007

In 2005, as a way of reducing New Zealand’s internationally low record of donating organs, the Labour government gave the Auckland Intensive Unit $500,000 dollars. In an investigation of the ICU and Give Life NZ, Salient volunteer feature writer Jenah Shaw asks: Where has all the money gone, and why has our rate of donation has gone down since the money was given?

IN 2005 Labour made a donation to encourage the number of organ donors in New Zealand. Organ Donation NZ manager Janice Langlands from the Auckland Intensive Care Unit cites this amount as around $500,000. However, instead of increasing, the number of donors has since gone down. In 2006 New Zealand reached a new low with just 25 people donating organs. At a mere six donors per million of the population, we compare poorly to other countries. Australia, while low, still has an average of 10 donors per million. America manages 21, and Spain sits at the other end of the scale with 35.

Statistically we are wedged between Iceland and Mexico.

Meanwhile, the waiting lists are getting worse. The actual figures are deceptive – while only 400 people are actually on the kidney waiting list, they are only those considered ‘desperate’ enough to have no other option. Additionally, kidney failure has left a few thousand on dialysis – also requiring transplants but neglected by waiting lists and official figures. Matched with increasing cases of both diabetes and hepatitis (which affects the liver) the future is not exactly shining.

New Zealand has a traditionally low record of organ donation. It is a subject that has been looked at several times over the past years – encouraged, in part, by media focus and public petition. When brought before the Select Committee in 2003 doctors argued that more money and staff training would allow an increase of donors by up to 15%. At this time there were 40 donors per year, theoretically leading to an expected rise to 46. Instead New Zealand has dropped to an all-time low and not for a lack of money. As well as Labour’s donation the Ministry of Health have tripled the budget and doubled the amount of staff – while the number of organ donors has halved. So where did the money go?

While Organ Donation New Zealand (ODNZ) talk at length about what has been implemented it essentially comes down to is this: the employment of three additional people; the establishment of a ‘link system’ through hospitals throughout the country; a web-based audit tool to identify possible donors; and increased study days which include a two day workshop every November.

Despite an all time low of donors Janice Langlands views these actions as successful. “If you’re looking at donor rates you’d say no [the money was not spent effectively], but looking at what we’ve achieved I’d say yes [it was].”

The measure of success, Langlands claims, cannot be gauged accurately by donor statistics. Instead fewer casualties from road crashes, improved medical services and technologies mean there is a drop in those deemed ‘appropriate’ for donation. This is in part true – medicinal improvements are certainly a valid factor – but the situation is considerably more complicated.

It is a common misconception that a yes on your driver’s license makes you an organ donor. Legally it does not – your family retains the right to veto your decision. Additionally, some people do not wish to tick ‘yes’ or agree to be a donor because they have no control over what organs would be donated. Meanwhile, live donors are often dissuaded by the monumental costs involved. For a long time they were unable to claim ACC as, ironically, donating organs was viewed as a ‘self induced injury’. This has changed – slightly. Today live donors are paid a Work and Income sickness benefit which, when compared to the costs of travel, accommodation and time off work is insufficient according to some commentators.

These complications, unaddressed, result in many opting not to donate at all. Last year there were 46 potential donors and, with only 25 donors, this leaves a total of 21 unexplained cases – nearly half of all cases. This is a significant oversight: just one donor has the potential to provide between seven to ten organs for donation.

If the use of extra money was employed successfully surely we could expect visible improvements? Actually no, says Langlands. “Our service is not necessarily about donor numbers … because donation isn’t right for all family members. It’s an individual choice. No-one has to be a donor.” What their achievements have done is ensure that “families are given all the information”. It is these achievements, ODNZ says, that show the money has been spent effectively.

Not everyone is so sure. Funding additional training is arguably unnecessary. In the four years that training has been provided for ICU doctors, few doctors have attended. Andy Tookey, promoter of organ donation reform group Give Life NZ, is critical. “I question the value of courses if nothing is going to go on. Obviously there is a reluctance.”

The link groups run throughout New Zealand hospitals, establishing a doctor and nurse in each intensive care unit and a nurse in each operating theatre to increase the identification of potential donors. Again Tookey is skeptical. “All that needs is for each hospital to select an ICU doctor and say ‘you’re the one responsible.’ I can’t see why that would take lots of money.” What it comes down to, he says, is coordination. But so long as people opt ‘no’ for organ donation, and so long as families retain the right to veto a donor’s decision, such systems are ineffectual against the central problems.

While many doctors argue that few families veto the wishes of the deceased there are no official statistics to back this. In Australia, America, Canada and the UK, an average 40% of families overturn a potential donor’s decision.

There is little reason to see that there would be significant difference here. What we cannot know is how many of those 21 cases were decided purely by the family, and how many indicated on their driver’s license that they did not wish to be a donor.

As there had been no audit on death and organ transplants in the last seven years – the last one covered the period 1999-2000 – there is no way of finding out where people are opting out. While an audit looks set to be completed at the end of this year it is, according to Tookey, only resulting from of the Select Committee’s reaction. “I’ve been calling for an audit every year because that’s the only way to find out how we’re missing people, and they haven’t done that. I believe they don’t want to do an audit because it will reveal where they are making mistakes.”

With or without an audit, there is little doubt that public ignorance is an important factor in New Zealand’s low rate of donation. Both Tookey and Langlands acknowledge the lack of awareness. “We do need to do more public awareness,” says Langlands, “although that does not necessarily mean that people will be more favorable to donation. That’s the reality. Even if the government gave us a million dollars and said, ‘Go and raise public awareness’, we can’t guarantee an increase in the donor rate.”

Tookey disagrees. “We all know public awareness helps a lot of things. In countries that do well with organ donation, they credit public awareness. They say it works and they are high performing countries, and NZ at the bottom of the pile says it doesn’t work. Who would you rather believe?” The increase of donor numbers in Spain has been linked to education and publicity. Romania, also struggling with low number have donors, have enough belief in public awareness to put $200,000 a year towards this purpose.

Even less costly forms of publicity are noticeable for their absence. Where Foreign Ministers vocally support organ donation – the Australian Minister of Health is a good example – New Zealand’s Ministry is, on the whole, silent.

This is a shame, says Tookey, “Because that allows promotion without costing them money”. Beyond this, it also indicates apathy – or worse, a worrying lack of concern. “They just don’t seem to be interested,” Tookey says. “I spoke to some Labour MPs off the record – one of them quite high profile in health – and they said it was cheaper to let people die.”

This commoditization of human life is, as well as ethically repugnant, somewhat inaccurate: wherever an organ donation takes a patient off a dialysis machine they save the government millions of dollars.

Meanwhile the system is bogged down by a series of self-debilitating conventions. Families’ wishes are given preference over the donor – unless a family wished to donate the organs of an unwilling donor, in which case Peter Hicks, Chairman of the Organ Donor Advisory Board, has indicated that the ‘no’ would win out. No beds will be made in the ICU for patients without hope of recovery – even if they are potential organ donors and beds are available. Families are the supposed priority of all proceedings yet 55% were not contacted at all last year, either face to face or by telephone. Perhaps the ultimate paradox is the measuring of ‘success’ not by the increase of donors or lives saved but by what was ‘achieved’: an outwardly polished system of link doctors, three extra jobs and increased training opportunities.

ODNZ may maintain that it is not viable to view success by the number of donors, but considering New Zealand’s current standing and growing waiting lists, this is a dangerous complacency. Medical technologies improve overseas as well as in New Zealand, yet most still manage a significantly higher number of donors per capita. With a reluctance to address what is wrong or to tackle this issue publicly our low results should then be relatively unsurprising.

As this article goes to print two Bills are being passed through Parliament.

One, the Human Tissue Bill, seeks to replace the 1964 Human Tissue Act and regulate the collection and use of tissues. Tookey opposes it as the Bill “actually gives people more reason and more ability to overturn your wishes to be an organ donor than is currently allowed”. The second Bill is the result of Tookey’s collaboration with National MP Dr Jackie Blue. If successful The Human Tissue (Organ Donation) Amendment Bill will provide registers where the wishes of a donor are legally binding, as are objections against donating, and the individual may specify which organs they wish to be donated. It also seeks to provide a public education campaign.

COMMENTS that were added to the website after this article was published

dave brown
October 3rd, 2007 at 11:28 pm

Jenah,
Thanks for this story. I found it via Scoopit which is an excellent news service.
It upset me to think that NZ’s are so besotted with their bodies that they can’t donate their body parts to those who need them. Only 25 donors a year is a terrible national disgrace. People emote publicly about child deaths, but how genuine is this emotion if it cannot encompass the elementary right to be a donor?
Our current fixation on our bodies as sacrosanct is a real testimony to the selfish attitudes of both the the baby boomers and the me generation.

One of our sons died this year and our family was more than happy to donate his various body parts. We knew this would have been his wish, but he didnt drive and was too young to have thought about making a will.
It should have been his right to donate his body legally and not been left to his family to decide for him. For example, his eyes provided corneas for two recipients who can now see. It was difficult to imagine the process of his eyes being removed and replaced with glass ones for his funeral. Many families would have baulked at the prospect of making such a decision when they were still in shock. It is wrong to place that burden on families. That is why I am not attacking families who decide against donations when they are in shock or mourning. I an attacking those who defend a system which fetishises the rights of families over the individual.
We got a letter from the transplant service telling us how our son’s body parts had been used. It was a comfort to know that the body he had no more use for was useful for others. It would have been even more comforting to think that he himself had already planned for this.

I despair of a country in which the majority of people seem to be selfish that they cannot see the simple act of humanity involved in donating body parts.
I say lets have a debate about this terrible inhumane attitude which is blocking a rational debate about donating body parts.
Since the drivers licence carries information which is required to be true and correct, subject to the holder being prosecuted, I support a change in the law that makes the donor statement on the licence a true indication of the person’s intention.
Similarly, a person should have the right to make this decision in his or her will, and to facilitate the quick removal and transplanting of organs, a donors register makes complete sense.
The arguments I have heard against a register are spurious in my opinion. They pander to the selfishness and emotional blackmail of relatives which then becomes a risk to a health system that is increasingly driven by consumer opinion. Are the DHBs afraid of getting sued for wrongful use of body parts?
It can only spark a healthy public debate.
The various legal statements of a person’s right to donate should be written into the Bill of Rights and override any rights of the person’s loved ones to alter this for whatever reason, however genuinely held, but inhumane and unjust for all that.
Dave

Article courtesy of Salient Magazine www.salient.org.nz



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