John Roughan: Hokum from the health pros on organ donation

06.03.2004 - COMMENT

One day last week a few of us put our heads together, as we do every day for an editorial, and decided to do something for the cause of organ donation.

Heath Minister Annette King had just announced the Government's response to a petition circulated by the father of a little girl with a rare liver condition, who is expected eventually to need a transplant.

The petitioner, Andy Tookey, wanted something done to tackle the shortage of available organs in this country. Evidently we have one of the lowest donation rates in the developed world.

Mrs King announced an extra $700,000 for her ministry's organ donation agency, mainly to give staff in intensive care units more training in the issues they face and maybe later a public awareness campaign. In a separate exercise, she said, the public would be asked whether a person's stated wish to become a donor after death should be able to be overridden by the person's family when the time arrives. We decided to grapple with that one.

The editorial said: "In principle the answer seems easy. If a deceased person has declared his or her organs available for transplant that is a decision that ought to be respected by family members and everybody else." But we found it easy to understand how in practice hospitals had given families of the deceased an effective veto. In the trauma of most circumstances in which suitable organs are likely to become available, nobody would want to argue the point with grief-stricken relatives.

On balance we suggested it would be kinder to all concerned, including families, if they were relieved of the decision. If the individual's willingness to be an organ donor was registered and witnessed in some better way than an entry on a driver's licence, the declaration should be sacrosanct.

Next morning I fielded a call from a publicity flack for the Auckland District Health Board. The editorial, she said, was causing consternation in the intensive care wards.

"Why?" I asked. It reflected a "utilitarian" worldview, she replied. It took no account of the spirituality of the human body.

"Pardon. Are you telling me these doctors have higher regard for a spirituality ascribed to a dead body than for the possibility of saving a life with an organ transplant?"

"Well, those are your values," she said. "Other people have different ones."

"Let me get this clear. Doctors who deal with organ transplants in this country have no particular view of the relative virtues of saving a life or allowing a family to veto a donation on some spiritual pretext."

That was more or less the position.

"Well," I said, "I'm no longer surprised we have one of the lowest rates of organ donation in the world."

Be that as it may, she wanted to know if we would publish a response from the intensivists. Would we ever. This was something people ought to know.

When the article arrived it was everything she'd promised. Signed by five healthcare professionals - Stephen Streat, Stephen Munn, Janice Langlands, Bruce King and William Silvester - its composition was as disjointed as most items with multiple authors, but the metaphysics were there.

The piece appeared on Tuesday. You might have missed it amid the glow of Oscars. It was quite astonishing.

It began by assuring New Zealanders that professionals involved in organ donation did not share certain "stridently utilitarian views".

"There are sound reasons organs are not removed from the dead bodies of people whose families object," it said. "These include an appreciation that bodies are not mere chattels but remain emotional, spiritual and cultural significance to the family, even in death."

They quoted an American ethicist, Professor Jim Childress: "Organ donation is a very complex area because the human body evokes various beliefs, symbols, sentiments and emotions as well as various rituals and social practices.

"From a rationalistic standpoint, some policies to increase the supply of transplantable organs may appear to be quite defensible but then turn out to be ineffective and perhaps even counterproductive because of inadequate attention to these rich and complex features of human body parts."

Rich and complex my eye. Emotionally, culturally, spiritually this subject is not complex at all. Emotionally, the idea of donating your organs, even after death, is scary. I dare say it scares everybody.

Many overcome the fear, at least to the extent of putting donor on their driver's licence. Most don't.

Culturally? Spiritually? If the prospective donor had no qualms on those grounds I don't see how others can invoke them. And I struggle to respect any cultural or spiritual position that says its adherents cannot donate organs but can accept a transplant.

Everyone, whatever their culture or religion, understands grief. My brother was just 17, cycling home one Friday evening, when he turned in front of a car. I remember looking at his well-developed young body and wondering if anything had been taken. Thirty years ago you couldn't be sure they'd tell you.

At the time I couldn't bear the thought. My mind was still trying to believe it was all a mistake and he would just wake up. Now, it would be quite good to know some part of him was possibly still living.

It's bad enough that medical ethics defer to families at the worst possible time, but worse that the profession promotes a spiritual or cultural hokum lending respectability to ordinary human denial.