The Quality Collapse: The Human Cost

The Seven Pillars of Data Management, a novel in seven acts.

Chapter II, The Quality Collapse. Pillar II: Data Quality. Part 3 of 5.

The Mother

Isabelle Beaulieu did not sleep for four days after her son was admitted to the PICU. She sat in the family room on the fifth floor, a room designed with the aggressive cheerfulness of institutional compassion: yellow walls, a mural of cartoon animals, a coffee machine that dispensed something that was technically coffee in the same way that a hospital is technically a building, and she waited. She waited through the intubation and the epinephrine drips and the consultations with the immunologist and the allergist and the paediatric intensivist who came in every four hours with numbers that Isabelle memorized even though she did not fully understand them: oxygen saturation, eosinophil count, IgE levels, peak flow rate.

She was a lawyer. She was trained to process information under duress. But there is a difference between processing a hostile cross-examination and processing the sight of your child connected to a ventilator by a tube that enters his mouth and descends into lungs that should be breathing on their own, filling and emptying with the mechanical rhythm of a machine that is doing the work his body cannot.

Her husband, Marc, a civil engineer with the National Capital Commission, sat beside her. He is a quiet man by nature, the kind of man who listens more than he speaks and who expresses love through acts of service rather than words, and in those four days he expressed his love by making sure Isabelle ate, by fielding calls from family members, by walking to the Tim Hortons on Smyth Road at 6:00 AM each morning to buy her a tea that she held in both hands for warmth but rarely drank.

On the third day, the immunologist explained to them what had happened. Not the clinical details, which they already knew, but the systemic details. The data migration. The merge algorithm. The corrupted allergy record. The fact that their son’s medical file had told the prescribing physician that Thomas had no allergies when, in reality, the absence of an allergy flag was not evidence of safety but evidence of a data quality failure that no one in the organization had detected for five years.

Isabelle listened to the explanation with the stillness of someone who is storing every word in a vault that will be opened later, in a courtroom, at a time of her choosing. Marc listened with his hands flat on his thighs, pressing down, as though he could anchor himself to the physical world against the gravitational pull of rage.

When the immunologist finished, Isabelle asked one question.

“How many other children have records like Thomas’s?”

The immunologist looked at the floor. “I’m told the number is significant.”

“Define significant.”

“Thousands.”

Isabelle nodded. She did not cry. She had been crying for three days and had no tears left, and besides, tears were not what this moment required. What this moment required was the particular clarity that arrives when grief is replaced by purpose.

She reached into her bag and took out her phone. She called her senior partner, a woman named Diane Gauthier who had spent thirty years litigating medical malpractice in Ontario and Quebec and who had once told Isabelle, during a late night of trial preparation, that the law exists for the moments when institutions fail the people they are supposed to serve.

“Diane. It’s Isabelle. I need you to listen carefully. I’m going to tell you what happened to my son, and then I’m going to tell you what happened to seven thousand other patients. And then we are going to file the largest medical malpractice class action in Canadian history.”

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The Physician

Dr. Amir Hassani learned that Thomas Beaulieu had nearly died from the prescription he had written at 11:30 PM on the night of the incident, when the Chief of Paediatrics called him at home. He was in the kitchen of his apartment in Sandy Hill, eating leftover biryani that his mother had sent from Scarborough in a Tupperware container with a Post-it note that read, in Farsi, “Eat properly.”

He set down his fork. He sat at the kitchen table for a very long time. The biryani cooled. The apartment was quiet. His roommate, another resident, was on call at the Montfort Hospital and would not be home until morning.

Amir Hassani had wanted to be a doctor since he was nine years old, since the afternoon his grandfather collapsed at a family dinner in Tehran and a cousin who was studying medicine performed CPR on the dining room floor while the ambulance was called, and his grandfather lived, and Amir understood that there were people in the world who knew how to stand between a human being and death and push death back. He had immigrated to Canada at twelve. He had learned English and French simultaneously. He had graduated from the University of Ottawa medical school in the top ten percent of his class. He had matched to family medicine at his first choice. He had done everything right.

And he had nearly killed a four-year-old boy. Not through negligence. Not through incompetence. Not through haste or carelessness or any of the failings that the medical malpractice system is designed to address. He had nearly killed a child because he had trusted the data, and the data was wrong.

He called the CareConnect help desk. He asked them to pull the allergy record for Thomas Beaulieu and explain to him why it had shown no known allergies when the child had, demonstrably, a severe penicillin allergy. The help desk technician, a young man in Kanata who was working the overnight shift, said he would need to escalate the request and that someone from the informatics team would call him back within twenty-four to forty-eight hours.

Twenty-four to forty-eight hours. A child was in the ICU. A physician’s career was in jeopardy. And the system’s response time for investigating a potentially fatal data error was twenty-four to forty-eight hours.

Amir hung up the phone. He washed his dishes. He went to bed. He did not sleep. He lay in the dark and stared at the ceiling and replayed the appointment in his mind: the examination, the diagnosis, the moment he had opened CareConnect and checked the allergy field, the words “No Known Allergies” glowing on the screen in the clinical sans-serif font that he had learned to trust the way a pilot trusts instruments: because you are taught, from the first day of medical school, that the electronic health record is the patient’s story, and you read it before you act.

He had read it. He had acted. And the story was a lie.

He would not return to clinical practice for six months. The College of Physicians and Surgeons of Ontario opened a review of his prescribing practices, a review that would ultimately exonerate him of any wrongdoing, but not before the process had extracted from him a toll that no exoneration could repay: the confidence that he could trust the tools of his profession.

There is a particular cruelty in a system that trains a young physician to rely on data, places him in an environment where that data is corrupt, and then subjects him to an investigation when the data’s corruption produces the predictable result. It is the cruelty of institutions that build broken foundations and then blame the people who stumble on them.

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