Jessica Barnett died when she was 17. She had started fainting when she was 12. It looked like a seizure. Her lips would go blue. She was put on epilepsy medication. The fainting didn’t stop.
Her grandmother read an article about Long QT syndrome. The Mayo Clinic defines it as “a heart rhythm condition that can potentially cause fast, chaotic heartbeats. These rapid heartbeats might trigger you to suddenly faint. Some people with the condition have seizures. In some severe cases, LQTS can cause sudden death.” The family thought that’s what Jessica could have. It is treatable.
They had her tested. One test was positive. Some at a different clinic were ruled negative. Her doctors didn’t believe that was what she had.
Jessica fainted again one day. It was a bad episode. Paramedics couldn’t revive her and she died.
Genetic testing after Jessica was dead confirmed she had Long QT syndrome. Her parents wanted answers. They called the CEO of the hospital to try an arrange a meeting with her doctors. They were denied, so they decided to sue.
Her parents gathered up her medical records. Jessica’s mother discovered the cardiologist never even looked at one of the tests. It was only sent to her general practitioner because that was the hospital’s practice. Other tests were apparently misread. The family was tested. Her father had it as well, though he showed no symptoms.
A lawsuit was settled out of court. Another 18 months after the lawsuit was settled and five years after Jessica’s death, the parents finally got to meet with her doctors. They didn’t know the family had requested to meet with them. They had not been told.
“The physicians jaws dropped open. They were thinking: ‘If we’d actually spoken to this family we may not have had to go through litigation,’” Jessica’s mother said. “They were right. All we ever wanted was to have our questions answered and know they were making changes so this wouldn’t happen again.”
The Oregon Patient Safety Commission discussed this case and cases like it. This case was from Canada. All those details we provided are courtesy of the efforts of the Canadian Patient Safety Institute and Jessica’s family. Where it happened, though, does not matter so much as what can be learned from it.
Medical errors and mistakes where patients are harmed are going to happen. Oregon actually has a model that allows families to get answers when medical errors occur — outside of a courtroom.
Passed in 2013 by the Oregon Legislature, the early discussion and resolution system allows for an open conversation between patients, families and medical providers when serious harm occurs. It creates confidentiality protections. Participants can speak candidly and reconciliation can be found without an adversarial lawsuit. That can encourage that improvements are made in patient safety. It can lower costs in the medical system. And families can get answers. Analysis of the program’s performance is convincing. You can find more about it at the Oregon Patient Safety Commission’s website.
But the program will go away without action by the Legislature. It is scheduled to sunset on Dec. 23, 2023. Senate Bill 110 introduced at the request of Gov. Kate Brown and the Oregon Patient Safety Commission would get rid of the sunset provision. It was state Sen. Tim Knopp, R-Bend, who moved the bill be sent to the Senate floor for a vote with a recommendation that it pass. It should.