Brief clinical appointments are making it impossible for women with breast cancer to get vital information about issues like whether to have a mastectomy or not, a researcher says.
A researcher says informed consent on surgical procedures like a mastectomy may be illusory due to lack of meaningful consultation. Photo: 123RF
The claim, by a doctorate researcher in Taranaki, adds to the controversy around informed consent, and whether the principle is being applied meaningfully and legally in the country's hospitals.
"Informed decision-making may be only an illusion," said Mary Sylvester, a veteran nurse now researching with AUT into breast cancer treatment.
Women's health advocate groups also have charged that widespread breaches of patients' rights, especially of women's rights, is taking place.
This has revolved around patient consent for trainees or other staff to be allowed in to participate or observe an operation.
Mary Sylvester Photo: Supplied
But Sylvester said the inadequacies extended to what patients were told about crucial choices.
"A significant number of women, when they hear the word 'cancer', are immediately hit by fear and hear nothing more after that word," she told RNZ.
However, there was no assessment going on into their comprehension.
When appointments with specialists were just 15 -20 minutes long, "it is impossible for women to be given the space or time to comprehend what is being said about their breast cancer".
"One woman asked me, 'What's a masectomy?'," Sylvester said.
Medical staff were not at fault, she added. Taranaki DHB's surgeons had been overworked, with until recently just two breast specialists in the region. "They are highly thought of and trusted."
Sylvester's preliminary research indicated it was the system that had flaws, including:
- No designated specialist nurse to help women understand
- No decision aids used to help with decision-making
- Lack of a nurse co-ordinator who a patient could check back with, except in more complex cases
- Lack of information about radiology, if a woman chose to get the lump out and not a full breast removal
"Surprisingly women do not see an oncologist prior to their decision on treatment as there are just not enough practitioners to offer this service," Sylvester said.
In some cases, patients were confronted with informed consent forms just before the surgery began.
The multidisciplinary team in charge usually were not able to help in the lead-up, as they mostly only had review meetings, once the surgery was done.
True informed consent required surgeons, specialist nurses, and psychologists or social workers to work together.
Sylvester is pushing for informed consent conversations to be recorded, and comprehension assessments, citing systems in the UK.
Best Practice Guidelines, which dated back to 2009, needed updating and then explaining to women, she said.
