Taking Initiative and Gaining Patient Trust
Saint Michael's Hospital
Steven’s Point, WI
Faced with a rare scenario involving a frightening genetic disease and limited local support, Infection Prevention and Control Coordinator Mary Gust took the lead to ensure the best possible outcome for a patient and the patient’s family.
In 2009, Mary’s hospital in Wisconsin reported a case of familial Creutzfeldt-Jakob disease (CJD) to the Wisconsin Division of Public Health (WDPH).
CJD is a degenerative neurological disorder that occurs in one in every 1 million people. Inevitably fatal, CJD causes rapidly progressive dementia and physical problems such as speech impairment, balance and coordination dysfunction, and seizures. While the majority of cases have no identified cause, about five to 10 percent are familial – meaning they are transmitted genetically.
In these cases, public health officials believe an ethical obligation exists to inform family members of their relative’s diagnosis, educate them about the disease, and give them the option to pursue genetic testing. But the occurrence of familial CJD is so rare – and the impact so troubling – that follow up (beyond initial care of the patient) can be delayed due to reluctance or unclear responsibility.
This was the case in Wisconsin – until Gust stepped in. As the hospital staff member who reported the CJD case, Gust was concerned by the initial lack of follow up with the patient’s family.
“These cases don’t happen very often, but when they do, they’re very troubling,” said WDPH Prion Diseases Surveillance Coordinator Jean Druckenmiller.
Over the course of nearly a year, Gust worked closely with Druckenmiller. She very carefully cultivated a relationship with the patient’s family to earn their trust. This enabled delivery of critical information and education to family members.
“I was a neophyte in infection control at the time, so it was very challenging to learn all of the aspects of this specialty,” said Gust. “But Jean and her team were very reassuring and helpful. This experience helped us develop a closer working relationship with the WDPH.”
Through Gust’s relentless effort, the hospital and WDPH were able to bring the case to a satisfactory conclusion – connection to a local genetic counselor and testing for interested family members.
“This simply wouldn’t have happened without Mary, “said Druckenmiller. “She carefully and deliberately worked through the multifaceted details of this very complex case. Most importantly, she never lost track of the human element as she accomplished the infection prevention and public health tasks at hand.”