A lawyer who worked on the Cartwright investigation into medical experiments 30 years ago is amazed that women are struggling again for consent to invasive procedures.
Several women have reported firsthand to RNZ that they are in surgery with many additional medical staff or trainees, or have invaded procedures that are hard to say no to.
“I tried to sit up, look around and see who was still in the room, but the nurse or the anesthetist, I’m not sure who pushed me back on the bed and tried to put the mask on my face to lay, “said a woman said RNZ.
Linda Kaye, who served as an attorney for the Department of Women’s Affairs on the Cartwright Inquiry in 1987, said the laws below and the patient code of rights she helped shape are very clear.
“I’m amazed. It’s not just informed consent. It’s the use of patients as a classroom subject without their consent and often when they are unconscious,” Kaye said.
The investigation was “very specific” about it, and it was insincere for DHBs and the Medical Council to propose additional clarification of the rules now, she said.
“In a word, garbage.”
This week, four women reported to RNZ firsthand about harrowing times in hospital over the past six years and in three regions to the health department.
This is because an official investigation is continuing into whether the North Shore Hospital has breached their informed consent.
The women did not want to be identified.
One had gynecological surgery in Christchurch.
“I have a phobia of surgery and my family has reacted to anesthetics in the past so I was already very concerned.
“I had developed a relationship with a surgeon who was very gentle and kind, answered all of my questions, and treated me with complete dignity, but about an hour before surgery they were forced to swap my care for a male surgeon I had Due to lack of time, I never met who was also very nice, but was new to me and scared me even more.
“I felt like I had to say I was happy with the swap or I would be wasting everyone’s time insisting on it regardless of my approval of the situation.”
The operation went ahead.
“When I was wheeled into the room, I saw between eight and ten people, most of whom were strangers. I hadn’t expected this at all, expected maybe five people, and immediately began to panic.
“I didn’t want all of these strangers to look at a very private part of my body.”
She tried to sit up. “I remember starting to cry.”
She later learned that she had aspirated under anesthesia – had absorbed liquid or solids into her lungs.
It would have greatly reduced her fear of knowing who would be in the room.
She said she left “mental scars”.
“I now live with an increased fear of surgery and a bitterness toward the system that was so overworked that it couldn’t take five seconds to comfort a young woman who had a panic attack before the surgery.”
“I feel like I should have spoken to someone about this earlier and complained about the entire operation, but I was scared that I was just a naive and anxious young woman and that it was my fault.”
Others talked about being rushed and being extra people in the theater.
Another woman said the lack of informed consent had spread to medical scans. She was at the Middlemore Hospital.
“Instead of getting permission before the appointment or considering cultural sensitivities, I let male students do internal scans.
“You will be put in place and after waiting so long for a scan you feel like you can’t refuse.
“I was so horrified but couldn’t tell my family anything and got rid of the clothes I was wearing that day, just wanted to forget.
“While a senior executive is present during the process, it doesn’t do it right.”
Medical ethics at stake
Retired attorney Linda Kaye said it was about medical ethics.
Patient use for exercise should be suspended until resolved, and in the meantime clinicians could be used as proxies for exercise, she said.
In this way there would be “no need to limit oneself to seemingly unacceptable criteria such as the dignity, vulnerability or the uninformed status of the patient”.
Medical authorities have been studying it for months this year, resulting in a proposed one-line clarification of the Medical Council’s guidelines.
Kaye denied any need for it. “These topics just shouldn’t be here,” she said.
“The Cartwright report made very clear recommendations that no more than two people who were not clinically associated should be present for surgery.
“That they should be presented to the patient before surgery, before anesthesia is suggested, that their names should be known, and that the patient should have the right to refuse them there if she so wishes. It is very simple.
“It seems like we were a bit naive in the idea that the profession and the DHBs would take these matters seriously. I really thought they would.”
“I am embarrassed by this naivete.”
Separately, the guidelines for informed consent regarding medical students will be revised. A member of the Cartwright collective, Professor Jo Manning, said the review process was “very robust”.
Kaye recalled how some women experimented at the National Women’s Hospital in the 1960s and 1970s and died of cancer or were seriously affected.
Fast forward to today, and the effects were still debilitating: “It’s a terrible violation of dignity. It’s a terrible aggravation of what you’ve already brought to your doctor.
“And it especially contributes to an overwhelming swoon.”