Improving Medical Diagnoses

"This is a case that hopefully would have been an example of maximizing learning, so it's very disappointing that they're not participating. I don't really understand what happened in Jess's case. I don't understand how the diagnosis was missed .. If we could get input from the doctors involved, we would learn a lot more about what happened and why it happened."
Dr. Mark Graber, North-Carolina co-founder of the Society to Improve Diagnosis in Medicine; editor of new peer-review journal Diagnosis

Sounds amazingly like an long-overdue initiative, one whose time has most certainly come. Medical and treatment errors resulting in great harm to patients in doctors' offices, in hospitals, during and after surgical procedures, are not exactly rare in occurrence. Most hospitals and the medical staff who operate out of them would prefer to keep a low profile on the incidence of medical 'accidents'. And certainly most people, trusting in the professional knowledge of their physicians and in the imagined safety of a hospital environment, would also prefer to not know, rather than be consumed with fear.

After all, this is a matter of health, of well-being at the most fundamental level. When we are ill we have faith in the competence of the medical practitioner to whom we entrust the state of our health to accurately diagnose symptoms leading to an understanding of what it is that assails us, so that appropriate treatment can commence. The incidence of errors leading to health complications and sometimes death is a  universal one. Doctors, after all, are only human.

They make mistakes just like anyone else. And it's all the more likely when they're busy, distracted, or just don't take their patients' complaints seriously. Which is what appears to have happened with a Nova Scotia teen who died of a treatable heart defect. Her fainting spells and other symptoms were routinely misdiagnosed. And this, not merely by one doctor, but three who were asked to interpret tests and reach a diagnosis.

A portrait of Jessica Barnett hangs on the wall behind her parents, Tanya and Phil Barnett, in Greenwich, Kings County. Jessica died in 2007, just before her 18th birthday, of an undiagnosed heart problem and her parents feel the medical system failed her. (ADRIEN VECZAN / Staff)

Her case represents just one of many. A new American medical journal, called Diagnosis, seeks to highlight such errors, explain them, interview the principals and make sense of the misadventures in the hope that then other health professionals who read the resulting articles will be enlightened and discover some issues that may have eluded them. Which newfound knowledge may inspire them to seek solutions to what may be blind spots in diagnoses.

However, when overtures for participation were made to the three doctors involved in the case in Nova Scotia, all three turned down the request to take part in the study by sharing "critical" perspectives of their own, with the researcher. "[The physician] felt pressure. He said that if you don't go along with what the CMPA (Canadian Medical Protective Association) wants, they drop you. There is ... a fear of the CMPA. Regardless of whether they're visible, whether they're at the table or not, they are there", explained Tanya Barnett.

It was her daughter, Jessica Barnett, who for four years beginning in 2002, suffered fainting spells, seizures and loss of consciousness to the extent during those episodes when she would turn blue. The suggestion was made by a neurologist that she suffered from epilepsy, or was hyperventilating. On the other hand, her family had read about a cardiac condition called long-QT syndrome, whose symptoms seemed to match their daughter's.

Long-QT syndrome is marked by abnormally long intervals between heart beat's Q and T waves on an electrocardiogram (ECG). The condition causes heart rhythm irregularities capable of leading to cardiac arrest and sudden death. Its victims are often young people who appear in the best of health. Visits to two cardiologists and other ECG and additional tests still saw diagnosis being elusive.

Both specialists rejected long-QT, even suggesting the symptoms might be psychological in origin.

A week before Jessica's 18th birthday, a month before her high-school prom, the young woman collapsed and she died. A cardiologist at Toronto's Hospital for Sick Children, Dr. Joel Kirsh, concluded that some of the tests given Jessica had actually pointed to long-QT. The review recommended the Nova Scotia hospitals consider how "this [missed diagnosis] could be avoided in future".

The family launched a malpractise suit in response to which the three doctors claimed their diagnoses to have been reasonable, given the information at hand. One of the doctors, a Dalhousie University medicine professor, explained he uses the cases in talks with his students, and as such is "open in the discussion of the error I made in her diagnosis and the consequences". Faint comfort that is to the dead girl's parents.

But he will nonetheless not take part in the journal project which he held not to be in the best interests of his health, or that of his patients. He also doubted whether it would prove to be "fruitful" for the Barnetts. Since one of their goals at this juncture is to see something positive come out of their loss, that speculative self-defense is ridiculous. They would be eager to see the case made a study in the new journal to help ensure that what happened to their daughter is less likely to happen to others.

As for the other two physicians, when Jessica's father Phil Barnett approached one in person, he claimed the CMPA had advised them not even to respond to emails requesting their participation. While Dr. Doug Bell, CEO of the CMPA stated in an email that the organization which he represented would not normally counsel physicians on "media matters", unless ongoing legal action was involved.

"The CMPA is very supportive of measures to improve the safety of care and does support efforts to transfer knowledge to enhance safer medical care", he claimed. There's a bit of a disconnect there; it's a struggle to garner that interpretation from the details in this very sad case of abandonment of professional responsibility.