Tapu Misa: We're all happy to receive but few willing to donate organs

by Tapu Misa, in NZ Herald 'Dialogue', 28 August, 2002. Reproduced with kind permission of the New Zealand Herald www.nzherald.co.nz

I have to confess that I was not one of the 1.1 million Kiwis who opted to list themselves as organ donors on their driver's licences. At the time I put it down to a basic mistrust of the health system and doctors, and an aversion to having my body parts tampered with, even after death.

Then there was all that publicity about hospitals keeping body parts without the knowledge or consent of families. It didn't inspire confidence.

A few months ago, though, I was forced to rethink my attitude. My brother-in-law was dying from liver failure caused by hepatitis B. He needed a liver transplant and he needed it fast. The doctors at Auckland Hospital's liver transplant unit gave him a few days at most.

Unfortunately for Barry, there wasn't a suitable liver donor waiting in the wings. It seemed that, like 40 per cent of patients with acute liver failure, he would die while waiting for a donor.

As his condition deteriorated, the doctors presented another option. If a family member was willing and suitable, he or she could take part in a live donor liver transplant.

That meant splitting the healthy liver of the donor and giving part of it to Barry. His brothers lined up for tests but only one met the criteria for a suitable live donor - my husband.

The doctors were careful not to push. My husband had to be happy with the decision. We as a family had to be happy with the decision. We weren't, of course. The risks seemed high - a one in 100 chance of death; and one in 20 of some other medical complication.

With my penchant for dredging up comforting news items in moments of crisis, I couldn't help but remember another live-donor transplant gone wrong. Brothers also, and in that case - it had been the healthy donor who died.

After a night spent agonising over the risks - and deciding finally that there was no real choice - he was let off the hook. Evidently, he was "anatomically incompatible".

We felt relieved but guilty. Two younger cousins offered themselves up for testing against the wishes of their distraught mother, but the doctors felt that it was asking too much of those who weren't immediate family.

By then we were approaching Easter weekend. We found ourselves talking, guiltily, about his having a better chance of getting a liver if he made it through the weekend.

As it turned out, it was a good Easter all round. The road toll for the weekend was the lowest recorded for many years. And the day after Easter Monday, Barry got a new liver, all the way from Australia.

Four months later, a grateful Barry is back at work in Wellington, exercising, eating well and taking very good care of his Aussie liver.

I found out later that road-accident victims account for under a third of all organ donors. Most organs come from stroke victims.

Last year in New Zealand there were only 37 donors but more than 300 people waiting for transplants. Our rates of donation are lower than Britain, the United States, France and Spain.

And although it's a national problem, Maori and Pacific Island rates of donation are particularly low. A study of cadaveric organ donations between 1993 and 1998 put the Maori rate at 1.8 per cent and the Pacific Island at just under 1 per cent.

Yet over the same period, 13 per cent of recipients were Maori and 5.6 per cent were Pacific Islanders.

What's stopping us? Cultural scruples, it seems. The idea of transferring body parts from one person to another is seen by many Maori as a breach of tapu.

I'm not sure what the Pacific excuse is. We could talk about deep-seated cultural taboos and the ancient belief that the best way to defile your enemies was to eat their organs. But I suspect that these days it's more to do with old-fashioned fear and ignorance.

Whatever the cultural prohibitions preventing us from donating our body parts, we seem to have absolutely none when it comes to accepting everyone else's. No one offered the chance of a lifesaving organ transplant ever opts for cultural purity and death.

It's a complex and sensitive issue, says a diplomatic John McCall, of the liver transplant unit at Auckland Hospital. Some doctors still remember the angry scenes that used to erupt in the intensive care unit at the hospital when requests for organs were made of Maori families.

No one wants to be seen to be coercing grief-stricken families, whether Polynesian or Pakeha. The problem is complicated by the fact that even those who have indicated a willingness to be donors on their driver's licences can be overruled by their families.

If the family say no, doctors won't push the issue. Which makes the donor designation all but useless in many cases.

In the United States, the low rate of organ donation among African Americans didn't start rising until Michael Jordan took up the cause in a television advertising campaign, urging black families to talk about organ donation.

Given the disproportionate need of Maori and Pacific communities here, we could do with a similar approach.

Whatever the source of our attitudes, we need to rethink them. If we wouldn't say "no" to an organ transplant, we shouldn't say "no" to organ donation.

I'm not sure what part, if any, cultural upbringing had to do with my reluctance to be a donor. But just for the record, family - I'm over it.