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Her son’s last stay at McLean was a turning point: Barb Chandler credits the hospital with helping him get his life back on track. So when she saw a flyer looking for new members to join the hospital’s Patient and Family Advisory Council, Chandler was intrigued.
“I thought if a major hospital like McLean is looking for feedback from patients and families, I’d be happy to contribute—to share with them my son’s experience as a patient and my experience as a family member,” said Chandler, a retired medical writer from Lexington. There were several things about her family’s experience—such as lapses in communication about her then 21-year-old son’s treatment—that she wanted to bring to the hospital’s attention.
And McLean has listened.
The Patient and Family Advisory Council—PFAC for short—has proved to be a powerful voice for the patient and family perspective. In an effort to improve the hospital’s communication with families, they spearheaded the creation of the Guide to Inpatient Care at McLean Hospital, a resource for patients, spouses, and other family members coping with a relative’s inpatient experience. The guide is now available on each inpatient unit and is part of every inpatient’s arrival and admission.
In 2008, Massachusetts passed a law that required every hospital to create a PFAC as a way to assure patient and family participation in hospital care, decision-making, and policy and program development. It is the only state that mandates this. McLean’s PFAC has 23 members, including parents like Chandler, patients, representatives from advocacy groups, and top hospital leadership. They meet every other month.
PFAC’s patient and family members also speak at employee orientations, staff meetings, grand rounds, and conferences. “We try to touch on what went well and what could have gone differently with our hospital experience,” explained Chandler. “I try to emphasize that just acknowledging that the family is in a challenging situation goes a long way.” PFAC is also discussing the possibility of creating a comfortable lounge where families whose loved ones are hospitalized can relax and regroup.
Patient Steven Sutton believed that his background in nonprofits and business would be valuable assets to PFAC, so he joined the group in January 2014. One issue he feels passionate about is fighting stigma and he heads PFAC’s stigma subcommittee, which sponsored last summer’s Wiping Out Stigma, a weeklong series of events focused on reducing stigma through advocacy and education. Sutton also participates in stigma-focused groups on hospital units.
Sutton said that he knew his work was making a difference when he was hospitalized briefly last year and a young social worker told him that she had heard him speak about his experiences during her orientation and that his words had shaped how she viewed her work. “I feel as though PFAC’s work is having a positive impact on patients, families, and staff,” said Sutton.
Senior Vice President of Patient Services Linda M. Flaherty, RN, PMHCNS-BC, said that her participation in PFAC has been one of her most significant experiences during her McLean tenure. “It is critical to hear the perspectives of patients and family members and through candid dialogue and collaborative partnership, we have worked to improve the experience for all our patients and families,” said Flaherty, who co-chairs PFAC with Gordon Hayes.
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