A lawyer who worked on the Cartwright Inquiry into medical experiments 30 years ago is astonished that women face a fight again over consenting to invasive procedures.
Several women have given RNZ firsthand accounts of being in surgery with many extra medical staff or trainees present, or being rushed into procedures with little chance to say no.
"I attempted to sit up, to look around and see who else was in the room, but the nurse or anaesthesiologist, I'm unsure who, pushed me back onto the bed, trying to put the mask onto my face," one woman told RNZ.
Linda Kaye, who was counsel for the Ministry of Women's Affairs at the Cartwright Inquiry in 1987, said the subsequent laws and patient Code of Rights she helped draft were very clear.
"I'm astonished. It's not just informed consent. It's the use of patients as teaching subjects without their consent, and often when they're unconscious," Kaye said.
The inquiry addressed that "very specifically", and it was disingenuous for DHBs and the Medical Council to now suggest an additional clarification of the rules was needed, she said.
"In a word, rubbish."
Four women have this week given RNZ firsthand accounts of harrowing times in hospital spanning the last six years, and across three health board regions.
This comes as an official investigation continues into whether North Shore Hospital breached informed consent.
The women did not want to be identified.
One underwent gynaecological surgery in Christchurch.
"I have a phobia of surgery, and my family has a history of reaction to anaesthetic, so I was already very anxious.
"I had built a rapport with a female surgeon, who was very gentle and kind, and answered all my questions and treated me with complete dignity, but by about an hour before surgery they were forced to swap my care to a male surgeon I had never met due to time constraints, who admittedly was also very kind but was new to me and caused me even more anxiety.
"I felt I had to say I was comfortable with the swap otherwise I would be wasting everyone's time, and that they would insist regardless of my approval of the situation."
The surgery went ahead.
"As I was wheeled into the room, I saw between eight to 10 people, most of whom were strangers. I was not expecting this at all, expecting maybe five people, and immediately began to panic.
"I did not want all these strangers looking at a very private part of my body."
She attempted to sit up. "I remember beginning to cry."
Later she learned she had aspirated - taken fluid or solids into her lungs - under anaesthetic.
It would have lessened her anxiety a lot to know who was going to be in the room.
She said she had been left with "mental scars".
"I now live with a heightened anxiety about surgery, and a bitterness towards the system, which was so overworked they couldn't take five seconds to console a young woman having a panic attack before surgery."
"I feel I should have spoken to someone about it sooner and complained about the whole surgery, but I was scared it was just me being a naive and scared young woman and that it was my fault."
Others spoke of being rushed through, and extra people being in theatre.
Another woman said the lack of informed consent extended to medical scans. Her's was at Middlemore hospital.
"Instead of getting permission prior to the appointment, or considering cultural sensitivities, I have had male students conduct internal scans.
"You get put on the spot, and after waiting for so long to get a scan, you feel you can't refuse.
"I was so horrified but could not say anything to my family and got rid of the clothes I wore that day as, just wanted to forget.
"While a senior staff is there during the procedure, it does not make it right."
Medical ethics at stake
Retired lawyer Linda Kaye said medical ethics were at stake.
The use of patients for training should be suspended until this was sorted out, and meantime clinicians could be used as the stand-ins for training, she said.
That way there would be "no necessity to defer to such apparently unacceptable criteria as the dignity, vulnerability or uninformed status of the patient".
Medical authorities have spent months this year looking at this, resulting in a proposed one-line clarification of the Medical Council's guidelines.
Kaye rejected any need for that. "These issues just shouldn't be here," she said.
"The Cartwright report made very clear recommendations that no more than two people who are not associated clinically should be present at operations.
"That they should be introduced to the patient before the operation, before any suggestion of anaesthesia, their names should be known, and that the patient should have the right to decline to have them there if she so wished. It's very straightforward.
"It seems we were somewhat naive in imagining that the profession and the DHBs would take these matters seriously. I had really thought they would.
"I am embarrassed now by that naiveté."
Separately, the guidelines for informed consent regarding medical students are being revised. A Cartwright Collective member Professor Jo Manning said that revision process had been "very robust".
Kaye recalled how some women experimented on at National Women's Hospital in the 1960s and '70s died of cancer or were severely affected.
Fast forward to today, and the impacts were still debilitating: "It's a terrible affront to dignity. It's a terrible exacerbation of whatever is the condition that you've brought already, to your clinician.
"And it contributes especially to an overwhelming powerlessness."
RNZ
