Published on May 09, 2012
Jessica’s family. Back, from left: father Phil, brother Brant, sister-in-law Melissa, sister Mikaela Barnett, grandfather Bob Rempel and Tanya Barnett. Front, from left, grandmother Sandra Rempel, niece Ada Barnett. Submitted
Published on May 09, 2012
Jessica Barnett was 17 when she died of long QT syndrome. Submitted
Family making patient safety a priority
BY WENDY ELLIOTT
Kings County Advertiser/Register
To read part one of Jessica’s story, click here.
Anguish over Jessica Barnett’s death five years ago was worse for the Greenwich girl’s family because they believed her death from cardiac arrest could have been prevented.
The 17-year-old died May 6, 2007, of long QT syndrome – an inherited condition affecting how heart muscle cells handle electrical activity - she had not been diagnosed with. Her death came after five years of fainting symptoms.
After reviewing the Medical Examiner Service’s report on her daughter’s death, Jessica’s mother Tanya Barnett said she has questions about how physicians interpreted five of seven electrocardiogram results. She also said her daughter’s records show a neurologist told the heart specialist that Jessica did not have long QT Syndrome.
“I’m not pretending (diagnosing long QT) is really easy, cut and dry, because this is difficult,” Tanya said. “We need to work harder.”
A Holter monitor - a portable electrocardiography monitor – test result was not examined until after Jessica’s death - more than a year after she had the test. Tanya said physicians did not try an implantable loop, an electrocardiogram (ECG) monitor suggested in the Medical Examiner’s report by Toronto Hospital for Sick Children’s cardiologist Dr. Joel Kirsh.
Wanting to press for positive changes in the way young people with heart arrhythmias are treated, the Barnetts launched a malpractice suite. According to Supreme Court records, the Barnett family sued the IWK Health Centre, the Valley Regional Hospital and four doctors in 2008. It was settled out of court in 2011. The family’s lawyer, Don Shewfelt, said the terms of the settlement are confidential.
Few malpractice suits go before a judge.
Litigation was one more horrible experience for the family.
“No parent should ever have to lose their child and even more so have to be put through what they have afterwards,” Jessica’s best friend Vanessa Smith said.
“We need a different system to fix this,” said Tanya, adding she is disappointed conversation with Jessica’s doctors ended after litigation.
She channeled her grief into conflict resolution studies at the University of Prince Edward Island, which she would like to apply to medical malpractice.
In the aftermath of Jessica’s case, she said, “everyone missed out on an opportunity to heal, even the physicians.”
Tanya, who for several years led a support group of moms who lost children called Mothers of Angels, wishes “doctors would listen to us, really listen to us.”
Campaigning for safety
Tanya, who has just opened a counseling practice, has become an advocate for patient safety after her experience dealing with the medical community. She is now of one of 41 Canadians affiliated with Patients for Patient Safety Canada who are trying to raise awareness.
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- Jessica's story
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“Medical error is a leading cause of death,” Tanya said. “In the United States, the loss amounts to three jumbo jets full crashing every other day.”
The patient safety movement is only about 12 years old in Canada. The Canadian Institute for Health Information's fifth annual report in 2004, using the institute's studies and Statistics Canada data to examine patient safety, concluded preventable medical errors contribute to between 9,000 and 24,000 deaths in Canada a year.
As an advocate for patient safety, Tanya said she believes better communication between the public and partners like Health Canada and the Canadian Medical Association could reduce the rate of medical error.
The family has a wish list. They passed on a 16-page document of recommendations to the local medical community after reviewing Jessica’s medical records and the Medical Examiner’s report and have launched an Internet campaign.
A key request for the Barnetts is that only experts to read electrocardiograms for LQTS.
Kirsh’s letter in the Medical Examiner’s report stated misinterpretations of Jessica’s tests are “consistent with published literature on the ability of non-specialists to identify QT abnormalities on ECG.”
In an interview May 4, Kirsh did not speak specifically to Jessica’s case, but said cardiologists with additional training in electrophysiology should be reading ECGs for LQTS: “they are the heart rhythm specialists of cardiology.
“The places to go for this sort of assessment are usually regional centres where there are a large number of cardiologists, where there is expertise,” he added.
Margie Jenkins, Annapolis Valley Health’s vice-president for organizational performance, said the patient safety movement is changing the culture of the medical system.
“It’s very important to break down the embedded culture and empower patients to speak up.”
The Barnetts and other patient safety advocates would like to see a single interface system for all Nova Scotia hospitals and tracking software for all testing.
Jenkins said the transfer of information between hospitals is “fraught with problems.”
There is no national system that ties medical records together and a mistake as simple and critical as a missed fax, Jenkins said, leads to human error.
Legacy of change
Jocelyn Vine, IWK Health Centre’s vice-president patient care, said in an interview last week there have been seven changes in cardiac procedures at the regional pediatric hospital since Jessica’s death.
She said the 17-year-old’s case had “a major impact on a lot of us: myself, the executive team and front line providers.”
In the past five years, Vine said, staff has focused on human factors, technology and improved communication.
It’s very important to break down the embedded culture and empower patients to speak up Margie Jenkins, Annapolis Valley Health
Vine said the cardiology and neurology group have not just learned from Jessica’s death, but have presented her scenario to their colleagues across the country as a way of advocating for a different approach. Dalhousie Medical School’s curriculum in the area of pediatrics has also changed as a result, she said.
According to Vine, the IWK can better analyze heart-monitoring technology now and genetic testing is better. More time is now invested in in-depth investigation of relatively infrequent syndromes, she said, such as LQTS
The IWK can now investigate cardiac issues through exercise while capturing data and the hospital is currently trying to recruit an electrophysiology specialist to work with children – the experts Kirsh recommends should be treating LQTS.
How the hospital team listens to families has also altered, Vine said. The IWK started a “family leadership council” of experienced families “to help us all learn.
“It is very helpful to hear directly. We try to listen carefully to families and work directly with patients and families on policy and procedures.”
In Kentville, Jenkins said Annapolis Valley Health’s district’s Smart Patient program’s focus on patient safety is one of the reasons AVH received exemplary status in its national hospital accreditation.
She said investigation and review is ongoing. “The board is informed and very supportive, too,” Jenkins said. “Everybody’s paying attention.”
The YouTube video of Jessica’s story is going to be shared with the AVH quality management committee, Jenkins added.
Five years after their daughter’s death, the Barnetts consider Jessica’s legacy lives on in her father’s pacemaker, a tiny namesake niece and the fight her mother feels compelled to wage.
Tanya said she is campaigning for patient safety it is for “all the other Jessicas. There are so many other Jessicas.”
“Jessica passed so many obstacles like a hurdler,”
friend Smith said, adding she is “so proud of the Barnett's for going through this fight to make patient safety a number one priority.”
The family’s lawyer agreed.
“Jess’ story should be a mandatory for every medical student,” Shewfelt commented.
Editor’s note: After part one of Jessica’s story was published, the IWK agreed to arrange a meeting between the Barnetts and two of their late daughter’s doctors.
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