Editorial: Telling the truth about brain death

Death, dying and organ donation seem morbid subjects to add to the school curriculum and the reasons behind the suggestion from the newly appointed director of Organ Donation New Zealand, Dr Stephen Streat, are not convincing. New Zealand has one of the world's lowest rates of organ donation and Dr Streat suspects it has something to do with a decreasing familiarity with death. Smaller families, and the trend for people to have children later meant that many children did not know their grandparents and grew up with little intimate experience of people dying. He might have added that increasing longevity means grandparents are living longer now too.

But it is hard to see how youthful discussion of death could improve the rate of organ donation. Many New Zealanders of all ages declare themselves donors on driving licences but not many die in circumstances that leave their organs suitable for transplanting, which means being kept alive on a ventilator in an intensive care unit. In those circumstances, doctors give family members the final say on whether the brain-dead person's organs can be removed and some, not many they say, over-rule the donor's decision.

By encouraging discussion at school Dr Streat hopes that young people would take the subject home and there it would be discussed more openly among family members. Schools were effective in that way, he says, when the anti-smoking message was propagated and he clearly believes fewer families would overturn a donor's wish if it had been well discussed.

That, though, presumes the information Organ Donation New Zealand puts out for discussion is the kind that will give families clear warning of what might happen if one of their loved ones died in suitable circumstances. The person, probably young, will have been mortally injured, probably in a car accident, and declared brain-dead. Brain death does not look like death and indeed the rest of the body will be still quite visibly living, albeit on artificial life support, when the decision has to be made.

Family members gathered around the hospital bed will be asked to give their permission for the body to be taken away, still breathing, blood still flowing in its veins. It will be a doubly traumatic decision for the family, a simultaneous decision to end life support and remove warm organs for rapid transplant. Little wonder that intensivists such as Dr Streat refuse to follow a donor's stated will unless the family members allow it. They have resisted pressure from a popular petition for the donors' wish to be respected above all, and when the Government announced that donors' decisions were to be recorded on a public register, the doctors said they would continue to give families the final say.

The doctors' sensitivity to the grieving can be respected but they could be less discreet about the reasons for it. Were they more open about the circumstances in which donations occur they would risk scaring away potential donors but the families of those who were not scared off would be much better prepared for the trauma they would face.

Full, frank forewarnings are highly effective. Prospective donors and their families simply need to know that brain death is actual death, whatever other bodily functions are being artificially maintained. Many need to be assured also that doctors will do their best to keep a donor alive whatever permanent injury the donor might have suffered. And families need to be encouraged to think of organ donation as a gesture that can even assuage their grief with the knowledge that something of their loss might give somebody more life.