Wednesday, November 25, 2009

Council Centers its Efforts

It was a Tuesday night and the colorful, child-friendly hallways of Ellison 17 were quiet. But inside the floor’s conference room, a lively discussion was underway between members of the Family Advisory Council (FAC).

While each meeting of the FAC at MassGeneral Hospital for Children holds its own agenda, on this particular evening the group was revising an important document-- a draft of care principles written by Massachusetts General Hospital leadership. All agreed the document was too patient focused, rather than patient and family centered.

The leadership of MassGeneral Hospital for Children feels strongly that input from family members and patients can help the hospital deliver better care. For that reason, it created the first FAC about eight years ago. That group disbanded five years later, but the current group started up two years ago and continues to grow.

Family-centered care is based upon the concepts of dignity and respect, information sharing, and participation and collaboration, according to the Institute for Family-Centered Care. Though the FAC’s 11 family members, four hospital leaders and three patient care staff bring with them diverse experiences, they share a passion for the hospital and its philosophy of family-centered care.
The group recently voted to increase the number of family members from 10 to 15, with four spots now open.

Plenty to give

One parent member, Libby Firenze, was especially vocal at the last meeting. Firenze’s son passed away earlier this year from complications of epilepsy, but she has remained active in the council, despite the difficult memories it conjures.

“There’s a lot of reasons why I stay, but there’s a part of me that wants to just run and hide,” Firenze says. “I do this to help other families and I still have that to give.” 

Her advocacy for family-centered care is a great part of what she has to give. “Learning the principles of family-centered care-- those were the things that motivated me to [join the group], but I couldn’t put them in words,” she says.

Those principles bring the unique group of parents, clinicians and administrators together for monthly meetings of the hospital’s only family-run committee. Co-chairs Seta Atamian and Jim Massman pack the two-hour agendas with opportunities where they can implement the principles of family-centered care.

Integrating families

That same meeting this summer also included a visit from chief resident Brad Monash, who spoke with the group about how families—both those in the FAC and others with children in the hospital-- could be involved in case conferences, where they would consult residents and offer the valuable family perspective.

“I felt that sharing my experience and discussing it with the medical community was just going to help making changes in the hospital, and benefit the children,” says Pascale Gouker, who lost her 6-year-old son to a biogenetic disorder and has been a member of the council for the past two years. “I had met with many specialists for so many years, I felt I could provide some feedback,” she adds.

Many of the FAC’s parent members have children with chronic disease. Atamian’s daughter had leukemia 10 years ago and has suffered health problems since. Massman’s son has cystic fibrosis.

“We feel confident that we’re getting great care here,” Massman says, but he acknowledges that there is room for improvement. He feels the FAC’s goals can be better achieved if council members become integrated within the hospital.

“Weaving ourselves into the fabric of the hospital, that takes bodies,” Massman says.

The addition of new parents to the group will undoubtedly help its cause, raising the voices of those who meet after hours in Ellison 17.

“I have that feeling that it’s my son’s legacy. Looking forward, others can benefit from what we learned,” Gouker says. “It’s a feeling of well being – his life will continue in the legacy of what the group is doing.”

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