What does justice look like when your child is killed by catastrophic medical errors?
For Alice Neikirk and Ray Nickson, justice took on sinister forms in their darker moments after a flawed operation on their six-month-old daughter Edna led to her slow and painful deterioration.
“How could it not when the only justice we were offered was in the fantasies we created as solace for ourselves?” Nickson said.
Alice Neikirk and Ray Nickson with their daughters Cynthia Nickson, 10, and Heidi Nickson, 2, and a portrait of their daughter Edna, who died after traumatic case of medical negligence.Credit: Dean Sewell
“She was the absolute bravest little thing. She had all the courage in the world and a very sweet personality when she had the strength to share it.”
Despite their grief (and Nickson being a lawyer), they did not pursue legal action.
“‘You have to sue the surgeon’ was the first thing we heard,” Neikirk said. “But if you carry hate and anger in your heart, it becomes you.”
The criminology academics at the University of Newcastle are advocating for victims of medical negligence to be offered restorative justice instead of having to endure the re-traumatising, secretive and bureaucratic hospital investigations process.
This victim-centred, less punitive approach would allow victims to express their pain, and those responsible to acknowledge the harm caused. It would aim to repair relationships and prevent future mistakes, said Neikirk and Nickson.
“Restorative justice is about saying ‘we have these harms in these relationships. How can we seek to restore them so that people are more whole?’,” Nickson said.
Edna had a genetic mutation, Pierre Robin sequence, causing abnormal jaw development. She had several procedures, and her doctors believed she would lead a normal life. But her prognosis changed irrevocably after a surgery that, her parents later learned, should never have been performed on a baby.
A surgeon punctured Edna’s small intestine with a feeding tube. No one checked the tube’s placement before starting her feeding pump. Her tiny abdomen became inflamed and distended as sepsis set in.
Edna Nickson was six months old when a botched surgery triggered a series of medical failures that ultimately led to her death.
“I remember begging for people to help me … ‘my daughter is really sick’,” Neikirk said, but her pleas were ignored.
“They let her lie there dying for more than a week,” Nickson said. By then, the damage was irreversible. Edna lived, but she never recovered. She died just after her third birthday.
The hospital investigated, but there was no apology and no explanation.
“I felt like I was never heard through the process,” Nickson said.
“The rights of privacy of healthcare professionals trumped our daughter’s and our rights as victims,” Nickson and Neikirk wrote in Alternative Law Journal. “We had no rights in the hospital’s investigatory regime.”
Edna’s care unravelled in a California hospital, but thousands of catastrophic medical negligence cases occur in Australia annually. An estimated 140,000 diagnostic errors occur in Australia annually and 21,000 cases of serious harm lead to 2000 to 4000 deaths.
Medical errors cause up to 18,000 unnecessary deaths and over 50,000 disabilities annually.
“I get terrible anxiety when I get anywhere near a doctor’s office, and my fear is that I’ll impart that attitude onto Edna’s sisters,” Nickson said of Cynthia, 10 and Heidi, 2.
“We wanted acknowledgment from the responsible parties,” Nickson said. “Families need to hear from doctors and hospital administrators how mistakes will be prevented, and they need to hear from families the signs and alarms that were missed.”
Restorative justice might not result in a “kumbaya moment”, Neikirk said. “It might not be popular with doctors, but a restorative process can bring up emotions that will be uncomfortable for everyone involved, and that is an important part of the process.”
Neikirk said restorative justice could coexist with other actions, including compensation claims, but it should not be imposed on unwilling families.
A NSW Health spokesman said responses to “patient safety incidents” follow the Australian Open Disclosure Framework: an apology, a factual explanation of what happened, an opportunity for the patient to relate their experience, a discussion of consequences and steps to prevent recurrence.
Meanwhile, New Zealand’s evaluation of a restorative approach found it met most people’s justice needs in ways that current approaches don’t, leading to a national policy of restorative responses to adverse events.
Jo Wailling, co-chair of the National Collaborative for Restorative Initiatives in Health, NZ said being involved in an adverse event was often traumatising whether you were a patient, a family member or a clinician.
“In hierarchical healthcare institutions, there is a culture of blaming the individual clinician, and a vast amount of shame goes with this. A restorative, just culture takes the position that clinicians intend to do the right thing and that a harmful event is usually the result of system failings,” Wailling said.
“If you start from that position, then [clinicians] are more likely to feel safe to speak openly, express remorse, and meet with the family. For some families, a meeting is crucial to process what happened.”