CALGARY—Step inside the front door of the Minocha home and you’ll see the shrine to Pamela.

Placed on a small table are reminiscences, citations, letters of condolence and photographs telling the story of the bright, successful young woman who grew up here.

They are souvenirs from a daughter and sister lost — and unanswered questions that remain.

It has been nearly three years since the healthy 33-year-old corporate professional entered St. Joseph’s Health Centre in Toronto with a toothache. She was declared dead seven hours later.

Like many Canadians who struggle for answers in the aftermath of unexpected deaths or injuries, Minocha family members say they discovered secrecy deeply woven into the country’s medical system, denying them answers to the most haunting questions a family can ask, a Toronto Star/CTV W5 investigation has found.

“There are many, many questions and inconsistencies that have not been answered in an acceptable manner,” said Arvin Minocha, Pam’s brother. “It’s astounding to see the lack of communication, the lack of compassion, the lack of accountability, the lack of transparency, and it puts so many people at risk.”

Hospital officials declined interview requests but in a written statement said they have communicated with the Minochas throughout the review process and the “facts, findings and recommendations of Ms. Minocha’s case have been shared with the family.”

The hospital’s internal review of Pamela’s care concluded her treatment was “intensive and appropriate.”

A coroner’s review of Minocha’s death recommended the hospital undertake a “lessons learned” review focusing on “communication with families in terminally/extremely ill patient” and protocols around cardiac life support and defibrillation.

Among the family’s unanswered questions: Has that recommended review been completed? Did it result in new information or changes? Will it be made public? Why do her medical records state that resuscitation was stopped after consultation with family when no one in the family had been consulted?

A $1.5-million lawsuit filed last year against the hospital and the medical professionals alleges staff failed to properly diagnose Pamela and to provide “appropriate, proper, and adequate care.” It also claims that the hospital failed to “train, supervise and instruct hospital personnel properly or at all.”

No statement of defence has been filed. The allegations have not been proven in court.

The degree of hospital transparency around tragic outcomes is a matter of heated debate within the medical community. How much information patients and families are given depends on the philosophical position of individual hospital administrators.

Some hospital officials are taking steps toward greater openness including interviewing patients and families as part of internal investigations and sharing findings. Others argue it is necessary to create a “non-judgmental and blame-free” environment to ensure staff can report errors without fear of retribution.

In Ontario, controversial legislation currently under review — called the Quality of Care Information Protection Act (QCIPA) and enacted in 2004 — allows hospitals to withhold internal reviews from patients and their families. In the Minocha case, for example, St. Joseph’s, citing QCIPA, did not share the review with the family.

Hospitals are not required to investigate medical incidents under QCIPA. It’s up to hospital administrators when and if to invoke the act’s protections.

It is powerful protection, exempt from provincial freedom of information legislation and legal inquiries from plaintiffs’ lawyers.

Most hospitals surveyed by the Star regularly conduct internal reviews under these discretionary powers, although there is a dramatic range: University Health Network, the largest hospital network in Canada, conducted 557 reviews under QCIPA privilege since 2010 while Toronto East General (recently renamed Michael Garron Hospital) has never used the act’s privileges.

Sunnybrook Hospital, which has had 32 QCIPA reviews since 2010, does not conduct all of its internal investigations under the protections of the legislation.

“Generally, QCIPA is used if there is any angst the team won’t feel comfortable speaking up without the QCIPA protection,” said spokesman Craig Duhamel. “As we are a learning organization that values improvement, it is not often we use QCIPA protection for our reviews.”

All the hospital spokespersons say they share review findings with patients and families as well as resulting reforms.

But, says malpractice lawyer Paul Harte, no formal documents are provided to the family. “Typically, they will receive a letter from an executive at the hospital,” Harte said. “The letter will generally set out that they conducted an investigation and what action if any they took. The facts are generally sparse.”

After repeated requests, Arvin received a letter from a St. Joseph’s vice-president in September 2014 that read: “We have responded as best as we can and there is nothing more that we can provide ... Please consider this our final correspondence. The organization will not respond to further communications on this matter.”

‘Unthinkable shock’

The tragedy of Pamela Minocha’s death is heightened by the potential of her life.

She was a manager with Coca-Cola in Brampton and studying for her MBA at Wilfrid Laurier University. Her deeply held commitment to social justice issues was evident in the volunteer work she did with cancer-care and youth education agencies.

“Sometimes, when a child is alive, you don’t know how blessed you are,” her mother, Usha, said. “But when I see now all the letters from her friends about how kind and giving she was, I realize how beautiful and giving she was. She’s an angel. She was my best friend.”

She was Arvin’s best friend too, and even separated by two time zones, the brother and sister texted and spoke every day.

In May 2013, Pamela was prescribed the antibiotic clindamycin by a dentist she visited to treat a toothache.

The next day, vomiting and disoriented, Pamela was admitted to St. Joseph’s with pain, her face swollen.

Her friend Tamar Nalbandian accompanied her to the hospital and called Pam’s parents.

“Initially, they said everything is OK,” she recalled. “I was just expecting her to wake up and to go and see her.”

Within a few hours, the message had changed.

“The doctors came in and said her heart had stopped ... They resuscitated her. But after a while, they came back and said it stopped again.”

Pamela’s parents and brother booked flights for Toronto, but while they were in the air Pamela was dying. Nalbandian was one of the last people to see her alive.

“A doctor came in and said we could say our goodbyes,” she said. “That was the most surreal and upsetting things I’ve ever seen. It didn’t feel real.”

Arvin arrived on the morning of May 23, 2013 shortly before his parents.

“I kept saying, ‘Where’s my sister, where’s my sister?’” he recalled. “Finally, one of the nurses said your sister passed away.”

Twenty minutes later, his parents arrived. Arvin had to tell them their daughter was dead.

“Their eyes just got very big. It was just unthinkable shock. There are no words. It’s like nothing you’ve felt before. Your whole body is sinking and compressing.”

Today in the family’s Calgary home, Pamela’s hair brush remains on her bedroom dresser, her clothes in the closet. Her image gazes back from the mantel in the living room.

“They’re (the hospital) not coming clean,” said Pamela’s father, Surender. “They’ve done their internal review and they don’t want to share with us ... If there’s nothing wrong, well, what’s wrong to share with the families?”

Last September, the province released recommendations that would “reaffirm the right of patients to access information about their health care.”

Ontario Health Minister Eric Hoskins said the changes will require hospitals to make facts and findings of internal reviews public. Hospitals will also be required to have a person representing patients attend the review.

“Perhaps hospitals haven’t had a full understanding of what their obligations to patients have been up until now,” he said in an interview. “We’re making that clear in the amendments to the legislation.”

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Hoskins said he believes the QCIPA has merit in helping get to the bottom of medical mistakes.

“We need to encourage a process which allows the truth to come forward,” he said. “I’m not saying that that’s happened with QCIPA over the last decade. That’s precisely why we’re making these changes.”

Initially, the government’s commitment was met with praise, but some lawyers say those intentions have now been watered down.

“The bottom line is that nothing of substance has changed,” Joe Colangelo, Toronto medical malpractice lawyer, said.

“This remains a process in which the results remain confidential, the patient doesn’t find out and the patient doesn’t participate ... In an informed, just and fair society, the default position should be to disclose unless there is a very good reason not to do so.”

Medical lawyer Amani Oakley said the legislation fosters a “cone of silence” that allows errors to be kept secret.

“In health care, that is all the more heinous because we are talking about information that rightly belongs to the patient ... Only when this information comes to light is there an incentive for people to take care, to be careful, and to give a damn about the outcome.”

The fight for answers

Many health care experts agree confidentiality helps encourage health care professionals to come forward and share valuable knowledge, critical in the reporting of hospital error.

As well, hospitals often have legal concerns about releasing internal reviews.

But across town, philosophies and protocols are very different at two Toronto hospitals.

The Hospital for Sick Children in Toronto has conducted only one QCIPA review since 2010, citing a “culture that fosters open dialogue and continuous learning.”

At Toronto East General, where the QCIPA has never been invoked, internal investigations engage family and patients and results of those investigations are shared with them.

“A decade ago, when we debated the use of this legislation, we chose a path to what we hoped to create in this institution, which was a just culture that would support higher patient safety,” said Dr. Ian Fraser, the chief of staff. “Transparency, communication, openness, empowering members of our organization to be aware of safety issues ... I believe that it has worked for us.”

Since 2010, the hospital has seen an increase in reporting for all incidents — to more than 2,500 from 1,751 five years ago.

The openness has not increased the hospital’s legal liability, Fraser said, because medical records are obtainable by patients, families and their lawyers.

“You’re not going to change the facts. They are there. What is more important, because that’s what we do in health care, is the care of the patient and the family.”

Dr. Rob Robson, a former chief patient safety officer of the Winnipeg Regional Health Authority, is a Hamilton-based physician and consultant to hospitals and health care agencies.

Generally, Robson supports the principles of QCIPA — and the similar provincial legislations — that protect health care workers from blame and allow them freedom to share important insights.

But openness remains a struggle, he says, with only 2 per cent to 8 per cent of critical incidents being reported a decade after these laws were put in place.

“A strict reading of QCIPA suggests you can’t talk to people about anything. That’s ridiculous. This is basic common sense and decency. It makes them uncomfortable to say to a patient or family, ‘We f---ed up.’ To me, it comes back to a moral question. If a system or individuals have acted in a way that creates harm and was not expected, surely we should be honest enough to say, ‘Here’s what happened and here’s what we’re going to do to fix it.’ ”

Seeking closure

The Minochas say they never set out to sue St. Joseph’s and only did so because it offers them hope of hearing what they need to hear.

“We’re supposed to put our trust in these people to protect the public, and patient safety and it didn’t seem like any of that was happening,” Arvin said. “There have been countless attempts to sit down, have conversations, understand, be open and, time and time again, it has led to more questions than answers.”

Among the most haunting of questions: the decision to withdraw life support.

Pamela’s discharge report says resuscitative efforts were stopped after discussions with family. But the Minochas say those conversations never happened because they were on planes when the decision was made.

“My question is: Who did they talk to?” Arvin said. “We were in the air. They did not ask for any consent. They consulted with their fellow physicians and made the decision and that it would be a burden on the family and that they are not required to ask the family.”

In a written response to the family, hospital officials said, “It is not a usual practice for physicians to seek the permission from a patient’s family to discontinue resuscitative efforts once it is clear that they are of no further use.”

Pamela’s parents say even a few more hours might have allowed them to say goodbye to their daughter.

“(If) you don’t know what happened, how you can move on?” Surender asked. “In the heart is a hole and I don’t know how that will (ever) recover.”

In a park that straddles Calgary’s meandering Bow River stands a wooden bench with a plaque: “In Loving Memory of Pamela Minocha.”

It faces the river, where Pamela and her brother would come to saunter and think and talk.

“We’re fighting now because she would want us to fight — for answers and for what is right so that this doesn’t happen again,” Arvin said. “It’s the way she lived. It’s who she was.”