Andy Tookey: Follow the will of the donor

Comments by the newly appointed clinical director of Organ Donation New Zealand, Dr Stephen Streat, do not inspire confidence he will get anywhere near improving our organ donation rates.

It seems ironic that as Dr Streat appears to support the position that medical staff will not follow a donor's stated will unless family members allow it, the American state of Illinois announced a law stipulating that if the decision of the donor was made in sound mind then no one can veto their wish. Illinois is the 43rd state to enact this law.

There is also the call from the British Medical Association to go even further and have an opt-off register, as opposed to an opt-on one, following the examples of 26 other European countries that have the world's highest rates of organ donation.

It baffles me why we have to keep reinventing the wheel in New Zealand and, in the meantime, many lives are lost.

There have been many debates about why families should have the last word, ranging through ethics and culture. If a person decides to be a donor, and has no qualms about any of these issues in regards to their own body, we believe it is not up to anybody else to invoke the decision on their behalf after they have died.

This is not even an issue about organ donation. It is about your right to say what should happen to your body after you have died and not have some long-lost cousin override your decision. It's called autonomy.

Unfortunately, in New Zealand, autonomy dies with the patient.

You may think I exaggerate about the long-lost cousin. Not so. It is not just immediate family who can veto your wish. Under the law, even people who are not related to you can object to your wish and donation will not go ahead.

It is not even a majority vote. If 10 family members are standing around your bed at the time of your demise and all but one agree with your wish to be a donor, then donation will still not go ahead.

Dr Streat's idea is to have organ donation education as part of the school curriculum. He talks of a pilot programme in Australia. This is nothing new. It has been been happening in schools around the world for years and was in my petition to Parliament more than three years ago.

My reasoning was that if teenagers are getting their driving licences, in which there is a compulsory field to fill out on organ donation, the least we could do was to give them the information required to make an educated decision.

In contrast, Dr Streat states the reason he believes it should be introduced is so that fewer families would overturn a donor's wish if it had been well discussed.

In many interviews, the organ donor service and related doctors have said that not many families overturn the wishes of the donor. But they never actually say how many.

A 2002 audit revealed that of the 104 patients who died in intensive care who were eligible to be donors, only 38 became so. Doctors shied away from asking for consent from the families of 35 potential donors and 31 families refused consent.

As an organ donor can save the lives of around seven people, that's some 462 people who could have died unnecessarily because of a lack of organs.

Our view is to take that burden from doctors and others and put control back with the individual.

* Andy Tookey is Director of GiveLife NZ, an organ donation reform lobby group.