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’s consultation looking into the relevant legislation closes for input on Sunday.
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”.
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* Kiwi man Brendon Demmocks wakes from two-week coma after water accident in Australia
Some former coma patients have, however, thrown their support behind doctors doing whatever it takes to help people.
For Jules Wilson being in a coma was not a hypothetical debate. She was just 21 when a car crash in 2005 changed her life forever.
Wilson, now 32, spent 2½ 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 in a further effort to save her life.
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 “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.”
Manning said a code of strict safeguards would be needed though.
Health and Disability Commissioner Anthony Hill said it was a complex and important issue.
“It is difficult to decide where to draw the line regarding what research is appropriate if the participants are unable to give consent.
“Consumers who are unable to make informed decisions for themselves are particularly vulnerable to abuses of their rights and interests.”
Hill said the law needed to protect people from cases like the infamous Unfortunate Experiment at National Women’s Hospital in Auckland.
It involved withholding treatment from women with cervical abnormalities without their knowledge or consent.
University of Otago medical ethics lecturer Dr Angela Ballantyne said it was a balancing act between vulnerable patients and the need for scientifically valid research.
“The reason we have good quality care is because we have a model of evidence-based care.
“If there is no evidence there is not good quality care.
“From a big picture perspective it is a real problem as we don’t have good evidence for these patients.”
Ballantyne said most people had no idea they could be subjected to testing and it was an important message to share with the public.
“I think it is the term research that sounds really bad and turns people off.”
She said the Unfortunate Experiment was an outlier and had no reviews by independent authorities.
“[Now] most research in NZ goes through a research ethics committee and would be peer reviewed.”