Patients’ ‘leap of faith’ make stories possible, prompt changes

Pamela Fayerman of The Vancouver Sun has been writing about a genetic counselor who has been “relieved of her duties” at the BC Cancer Agency, part of the Provincial Health Services Authority, for allegedly failing to document cases.

Part of the counselor’s duties included making arrangements for genetic testing for people who fit the criteria for having a predisposition to cancer. But patients told Fayerman that “tardiness and lack of communication was part of a disturbing pattern” that led to the personnel action.

Fayerman, through one woman’s story, explains how the delays and lack of communication have affected patients and their families and the decisions they have made while waiting for testing. In the case of one patient:

If she had received results of genetic testing right after being diagnosed, she said, she would have been in a better position to make a decision about having her breasts removed or whether a lumpectomy (which she had) was sufficient. And her other organs might have been spared from damage due to chemotherapy treatment, she says. In addition, she would know sooner about whether her daughter faces an increased risk of breast cancer.

In a blog post, Fayerman says the stories wouldn’t have happened if patients had not called her to tell her their stories. She discusses the “leap of faith” such sources must make and how she handles patients who decide to step forward and share their stories publicly.

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