Coma rules for patient guinea pigs face reform
Questions over way doctors treat some of country’s toughest cases, writes Nicholas McBride.
DOCTORS can legally experiment on adult coma patients in New Zealand without their consent if it’s in their ‘‘best interest’’.
But that might soon change given that the Health and Disability Commissioner has been looking into the relevant legislation.
Medical experts have welcomed the move because they feel the uncertainty about the repercussions needs to be addressed.
Reform of the law governing research involving coma patients who are unable to give their consent ‘‘could include amendments . . . or the creation of new legislation specifically addressing this topic’’.
Some former coma patients have, however, thrown their support behind doctors doing whatever it takes to help future patients.
Jules Wilson was just 21 when a car crash in 2005 changed her life forever.
She spent 21⁄ weeks in a coma and had a section of the side of her skull taken out to relieve swelling.
Doctors were unsure if she would pull through and were contemplating cutting through her forehead. She would have been the first person in New Zealand to have the front of her skull removed.
But Wilson showed enough signs of improvement that doctors decided to hold off on ‘‘experimenting’’ on her.
Nearly 12 years on, she accepts whatever the doctors did was in an effort to save her.
‘‘I think they should be able to try everything they can. If someone could have told me you will be a vegetable, do you want out, I would have said yep. But the fact is you don’t know.
University of Auckland Faculty of Law associate professor Joanna Mary Manning said the current legislation was very restrictive.
‘‘A parent has legal power on behalf of a child under 16, if it is the child’s best interest. However there is essentially a legal vacuum, no one can consent on behalf of an adult.’’
Manning said a law change would be needed for that.
‘‘There is considerable uncertainty as to whether it is lawful to involve people who are not able to give informed consent in medical research. [However] if there is not research, then this class of patients may be deprived access to new medicines.’’
Health and Disability Commissioner Anthony Hill said it was a complex and important issue.
‘‘Consumers who are unable to make informed decisions for themselves are particularly vulnerable to abuses of their rights and interests,’’ he said.
The law needed to protect people from cases such as the infamous Unfortunate Experiment at National Women’s DAVID UNWIN / FAIRFAX NZ Hospital in Auckland, when women with cervical abnormalities did not know treatment was being withheld.
University of Otago medical ethics lecturer Dr Angela Ballantyne said most people had no idea they could be subjected to testing and it was an important message to share with the public. ‘‘It is the term ‘research’ that sounds really bad and turns people off.’’
The commissioner’s consultation process closes today.