Questions of medical ethics

ANGELA GREGORY reports on the complicated issues surrounding the use of body parts in the practice of medicine.

Fifteen years ago Yvonne Churches sat in Green Lane Hospital's intensive care unit cradling her tiny baby daughter Sarah, who had died just 10 minutes earlier.

Within moments a doctor bustled in wanting an autopsy for the baby whose heart had failed.

Churches felt hassled and said she did not want her 6-week-old daughter cut up.

"He was very insistent and said it would be really important for research."

The mother, then just 22, became upset and her mother fetched a social worker to "get that man out of there".

Later that night Churches discussed the request with her husband and they decided if it was important to help other babies, they would agree to a limited autopsy.

Now the Wainui woman fears the doctors may have taken Sarah's heart and kept it.

Sarah had died on February 27. It was on the 15th anniversary of Sarah's death that Churches looked at the television on Wednesday to hear that hearts had been taken from dead babies and children and stored at Green Lane Hospital.

"It was freaky. I am quite horrified at the thought her heart could be sitting there in a Tupperware container."

Churches suspects her daughter's heart was taken as Sarah's autopsy report had noted severe cardiac lesions.

"It was not your average hole in the heart. A lot more was going on there."

She now has to wait, possibly until the end of next week, to find out if her baby's heart was retained.

If it was she will ask for it back and bury it under the silky oak tree where Sarah's ashes lie.

Her situation illustrates the strains between the wants of medical science, the good of society and the need for sensitivity and trust over access to body parts after death.

Informed consent is now widely regarded as critical to the ethical use of body parts.

That also includes consent for what is done with any body specimens removed during medical procedures for the living.

Health and Disability Commissioner Ron Paterson said there needed to be a balance.

The significant move towards informed consent came after the release of the 1988 Cartwright report, he said.

Then Judge Silvia Cartwright had said informed consent should be at the core of health treatment and research, and that had not been fully recognised in New Zealand.

Since then both public expectation and professional practices had changed.

But Paterson said some were now suggesting the pendulum had swung too far the other way.

There were, for instance, concerns that cervical smear quality assurance could be compromised by consent concerns.

Pathologists were worried they could not go back and check samples without consent, and that might mean critical audit work was not done.

Paterson said it also affected the ability to anonymously monitor tissue samples to check for prevalence of disease. Using samples only where consent had been obtained could lead to skewed results.

"But this is a long way off what happened with the hearts and I am not for a moment suggesting consent should not have been sought there."

The chairman of the Medical Association, Dr John Adams, said it was disturbing to hear some hearts were taken without the consent of the babies' parents.

"It seems unethical."

Adams said the medical profession recognised the significance of informed consent as highlighted by the Cartwright inquiry.

"While it seems that consent was sought and given for most of the hearts obtained by Green Lane since then, it appears that the hospital's processes were inconsistent and unfortunately some hearts were obtained without consent."

Adams said in earlier decades the issue of consent was not viewed in the same way.

"Yes, it was paternalistic, but so was society in a way ... that's how it was."

Looking back, he said, that approach was clearly wrong.

Society and medicine had since moved on and medical practices had changed.

Another way the medical profession had developed was by the regular updating of the association's code of ethics: a new version was expected to be approved this month.

It would contain clear rules around teaching and research, he said.

A New Zealand transplant donor coordinator, Janice Langlands, said consent was always sought from families of brain-dead patients.

Doctors would never go against the wishes of the family, even if the brain-dead person had previously indicated they were a willing donor.

"We would not want to remove organs if the family were against the idea. It is a traumatic enough time for them already."

For the past two years close to about 80 organs had been donated for transplant, representing about half the brain-dead patients whose families were approached.

The organs were taken in compliance with the Human Tissues Act 1964 and the Ministry of Health had set out rules in a transplantation of cadaveric body parts guide in 1987.

Auckland coroner Sarn Herdson said if there were to be any organ donations after a coroner's autopsy they would be administered through tissue coordinators.

Families would be notified and their consent sought.

"I am sure 20 years ago the process was quite different."

A spokeswoman for the Auckland District Health Board, Brenda Saunders, said patients were asked to sign general consent forms before surgery.

The retention of body parts was of particular importance to Maori.

Maori health consultant Moe Milne said the heart scandal was abhorrent to her people.

She said Maori were reluctant to either donate or receive body parts, except if they were going to or being taken from whakapapa relatives.

That was sad as many Maori needed transplants, she said.

While the heart library is said to be the only collection of body parts still kept in New Zealand, except for those used by medical schools or for research, many hospitals hold pathology specimens.

In other cases the collection of human material, even blood, can raise privacy issues.

Blood samples have been collected from New Zealand babies for the past 24 years.

They can be released only with the permission of a partner or close relative, and are not provided to police on demand.

But some parents are concerned the blood sample might be somehow used against their children in later life and won't agree to its storage.

The heel prick samples are taken five days after birth, with the consent of parents, and used to test for seven serious congenital disorders including cystic fibrosis and hypothyroidism.