Government puts organ donor register on hold

At any one time hundreds of New Zealanders await the phone call that will tell them the kidney or liver they desperately need is available. That call could come today or be years away. Some will die before it comes.

New Zealand's organ donation rates are among the lowest in the developed world, and although 1.1 million of us have said yes on our driver's licence to being a donor, the chances we will die in a situation that allows us to donate are low. Even if we said yes, our surviving family might say no.

This prompted Auckland man Andy Tookey, whose daughter will need a liver transplant, to organise a petition in 2002 seeking changes to address the donor shortage.

His petition, signed by 1169 others, started a chain of events that led the health select committee to recommend the Government establish a national organ donor register.

But just two weeks before Christmas the Government deferred the idea. It was the second time it had given the thumbs-down.

The decision prompted howls from opposition parties, who said a register was a vital component in improving donor rates.

Mr Tookey, who has started a second petition for donor autonomy, believes the Government is being hijacked by the medical profession.

"It's a case of the tail wagging the dog, and the ministry are very aware that rather than doing what's best for the majority of New Zealanders, they are going with, 'We don't want to fight with the doctors'."

A register would contain a list of names and record whether a person wanted to be a donor. Proponents want it linked to the primary health care system and intensive care units.

Last February, Health Minister Annette King rejected the committee's recommendation to set up a register linked to the driver licence database, and asked for cost and effectiveness estimates. The committee then asked the Government to investigate setting up a register independent of the forthcoming Human Tissue Review.

This week, Ms King rejected any suggestion the Government was deferring a decision and said she had an "open mind" about a register but it must be considered as part of a Human Tissue Review.

That review covers consent issues for the collection, retention, management, storage and use of human tissue and the role of the family. It will also look at the costs and benefits of a dedicated register.

Ms King said consent issues needed to be sorted out before a register was put in place, otherwise it was no different than the "list of names on Land Transport, which doesn't hold any weight".

So, how bad is the organ donor problem and would a register make a difference?

Each year organs are taken from about 40 New Zealanders who have died - a rate of 9.9 for every million of population - compared to 12.1 in Britain and 33.8 in Spain.

New Zealand's donor rates - the same for about 10 years - will never keep pace with demand. About 350 people are waiting for organ transplants, mostly kidneys.

Janice Langlands, of the national donor co-ordination office, says New Zealand's rate is about the same as countries with similar culture and health services - in most states in Australia the rate is about 10 for every million.

She believes the rates in Spain can be attributed to several reasons, including support from the Pope, an "obedient Catholic race" and resources being pumped into hospitals to identify and manage donors. "They are probably more persistent in their approach."

Although about 28,000 people die in New Zealand each year, only about 100 are potential donors. In most cases donors are people who have suffered a brain injury as a result of, say, a spontaneous haemorrhage or car accident. They become brain dead.

Ms Langlands says most people die because their heart stops beating, making them unsuitable donors.

Ironically, the reduction in New Zealand's road toll and improvements in the treatment of brain haemorrhage have meant fewer organs are available.

Misconceptions that older people can't donate also have an impact - recently the service expanded the age range for donors.

Ms Langlands says the service does not believe a register itself would increase donor numbers. In Australia, where a register was introduced in 2000, donor numbers have fluctuated.

"I think the people involved in organ donation believe we would still want the option of donation to be discussed with the family. We would never want to go ahead if the family wasn't in agreement. A register is only an indication of what a person wants. It shouldn't be binding."

Only 10 of the 40 donors in New Zealand in 2003 were known to have recorded their wish to donate on their driver's licence. Few families overturned their relative's wishes.

Auckland City Hospital transplant surgeon Professor Stephen Munn does not support a register or believe there will be dramatic consequences without one, provided the Government continues financing the revamped Organ Donation New Zealand and training intensive care staff to identify potential donors.

He said the staff were unlikely to use a register - they seldom used the driver's licence - but would continue to ask family about their loved one's wishes. A register could even be counterproductive, as fewer might sign.

It was not a decision care workers had taken lightly. Recently he had to decide which of two recipients should receive a donor liver, knowing the other would die. "That's a decision I hate making.

"When we are saying we don't want an organ donor register, it's not because we don't want more organs donated or couldn't use them. We really could. These discussions are very considered. We have a great need. But we can't use knee-jerk reactions to get what we want."

Ms King said overseas registers raised ethical problems and there was little evidence to prove they increased donor numbers.

Organ Donation New Zealand, to be set up by July, had been given additional funding for a medical director and charged with co-ordinating and boosting national donor rates and expanding the education of medical staff. It would also be responsible for public awareness campaigns, she said.

Ms King said the Government was expected to consider the policy on the regulation of human tissue during March. That would take into account issues such as donor autonomy versus family wishes.

Health select committee chairwoman Steve Chadwick said a private members bill was "not off my agenda".

Medical Association chair Tricia Briscoe supports the register idea.

Why the timing

The Government is adamant it announced its rejection of a national organ donor register just before Christmas to meet a parliamentary deadline.

Health Minister Annette King says the decision to reject the select committee's recommendation was released 10 days before the Government needed to. But as Parliament had already gone into recess it received scant political attention.

National Party health spokeswoman Judith Collins says it was dumped before Christmas because the Government "didn't want to come out and say they weren't going to do anything about it".