Research probes ‘institutional betrayal’

The bare physical facts of Brittany Bowley’s childbirth were harrowing enough.

Her son’s head had emerged when suddenly the rest of his body got stuck, prompting a dramatic effort to literally “cork-screw” the newborn out and allow him to start breathing.

But it was the way nurses and doctors responded to the crisis six months ago that left Bowley soured by the experience.

The Airdrie, Alta., woman with a tiny physique says no one checked for potential complications during her 41 hours of labour; the delivering doctor suggested she get counselling for post-traumatic stress, but none was offered; and a pediatrician called the baby’s broken arm a minor problem that would clear up in seven to 10 days.

It still had not healed a month later, the limb having stopped moving by then.

“They shrugged off the whole experience, basically,” Bowley says. “The whole situation makes me angry.”

Her son has fully recovered. But lingering feelings of neglect such as Bowley’s are the focus of fascinating new research that adds a novel twist to discussion of medical error and patient safety.

Psychologists at the University of Regina are scrutinizing the health-care system for signs of what they call “institutional betrayal”: a failure of organizations to respond effectively to unexpected or negative events, potentially causing unnecessary emotional trouble for patients.

The concept was conceived just eight years ago by University of Oregon researchers, initially to describe the reaction of rape victims to colleges or religions organizations that gave short shrift to their allegations.

Early work by the Saskatchewan academics suggests that for patients, feeling betrayed by a trusted health-care institution sometimes produces or aggravates post-traumatic stress syndrome, depression and anxiety.

“When institutions take responsibility for mistakes or actions, people can feel supported,” said Bridget Klest, a psychology professor at the University of Regina. “(But) when the institution maybe denies the mistake or covers it up or is unsupportive in some way, the person can really experience additional harm.”

In a 2016 study, patients complained of doctors and institutions giving too little information about treatment risks, misdiagnosing problems, lacking compassion and sensitivity, and failing to take responsibility for errors.

“Many, many times over the years I have been disbelieved, dismissed, insulted and disrespected,” said one of them.

Another study, published this April by Klest and doctoral student Andreea Tamaian — who is spearheading the research — surveyed a group of 352 chronically ill patients.

Even after filtering out the effects of age, sex and factors like having had earlier trauma or being distrustful of doctors generally, the subjects who reported signs of institutional betrayal were more likely to suffer PTSD and depression, the researchers concluded.

Now Tamaian is launching a new study, looking at women going through childbirth, amid recent evidence that the process can cause lasting trauma. Subjects are being tracked from the third trimester before delivery to three months after to garner a real-time assessment of their emotional state, and possible feelings of betrayal.

Tamaian has 115 pregnant women signed up and is actively seeking 100 more.

In the meantime, she’s heard from many new mothers who are encouraging her to probe further.

“Women have mentioned that (childbirth) is kind of taken as the norm: you give birth, you go home and you kind of have to get over what happened,” Tamaian said. “There’s no formal supports or ways to deal with things that have happened.”

She admits some Canadians might question the significance of something as intangible as feeling betrayed by an institution, and insist that what really matters is the physical outcome of treatment.

But she argues that conditions like post-traumatic stress and depression can lead to more use of a heavily burdened system.

Though still preliminary, the work points to action that health-care organizations could take, says Klest. Instead of being fixated on maintaining a good reputation — even to the point of covering up problems — she advocates an approach of “institutional courage” that includes openness and honesty when things go wrong.

Bowley says she was left with nagging questions about the “traumatic” delivery of her son. Could it have been prevented with closer monitoring? Should a vacuum or caesarean section have been employed earlier?

But the questions went unanswered. As Bowley recovered, she says she never saw the doctors involved again.