‘Councils’ have offered ‘counsel’ for 10 years
The word “council” means “an assembly of persons called together for deliberation or discussion,” while “counsel” means “advice or guidance.” For the past decade, the Patient and Family Advisory Councils (PFAC) have illustrated both definitions.
Since their founding in 1998, these groups have left their mark throughout Dana-Farber — from improving patient services to helping design clinics to publishing Side by Side, a newsletter written by and for patients and families.
Back then, Dana-Farber’s inpatient beds had just moved to neighboring Brigham and Women’s Hospital as these two institutions began a now-robust partnership to provide cancer care for adult patients. In addition, Dana-Farber was still feeling the echo of two devastating medical errors that occurred in 1994.
Patient and families were concerned on both fronts, and said so. Their courage in speaking out, and Dana-Farber’s willingness to listen, led to the formation of two groups we know today as “P-Fack” (PFAC) — one founded in 1998 and devoted to adult care, and another launched in 1999, focused on pediatrics.
Their accomplishments over the last 10 years were celebrated at a recognition dinner on Jan. 8.
Today, the Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC) offers integrated care for adult patients, and the councils are an international model for patient- and family-centered care, drawing site visits from hospital representatives worldwide, most recently as far-flung as Iceland. Similarly, hospital leaders and council members are frequently invited to speak at various health care organizations about how to create similar structures.
“It has been an incredible experience to plant a seed and watch it grow, see a vision become a reality, and bring about change in such a positive way,” said Martie Carney, a founding adult council member. Marlene Nusbaum, who transitioned to emeritus status this year, said, “This work has allowed me to give back some of the goodness Dana-Farber gave me.”
A legacy of improvements
It’s hard to imagine Dana-Farber without the Eleanor and Maxwell Blum Patient and Family Resource Center or the Leonard P. Zakim Center for Integrative Therapies, but their existence is owed, in part, to advocacy from council members. In addition, pediatric patients can receive intravenous hydration at home, and adult patients entering the DF/BWCC emergency room are “fast tracked” to an oncology bed, thanks to the council’s input. Recently, their perspectives were key in the creation of satellite clinics at Faulkner Hospital in nearby Jamaica Plain, and at Milford Regional Medical Center 35 miles southwest of Boston. They are also involved in planning the Yawkey Center for Cancer Care, now under construction, that is adjacent to the main building.
With their ID badges and familiar faces, these volunteers were “embedded” in the workings of the organization long before the word became widely used. In fact, many staffers are so accustomed to patients and their family members showing up at meetings that they don’t realize how unusual it is. Advice from these key groups — each one comprises approximately 18 patients and their family members, along with several staff members is sought on nearly every important matter concerning patient care. Their opinions in real time offer a glimpse of patient care that goes beyond written surveys.
“Patient and family involvement is an expectation, not an exception,” says Patricia Reid Ponte, RN, DNSc, FAAN, senior vice president for Patient Care Services and chief nurse. Council perspectives stay fresh because each member serves for three years, after which many stay on as nonvoting, emeritus members, retaining their role as advisors. For the first time this year, 70 percent of the active council members are new. “We can’t remain the same from year to year,” says former adult council co-chair Jim Stam. “We have to grow and change.”
Still, the original mission endures. Christine Reilly, who joins Eric Rodriguez at the helm of the pediatric council, says “We help clinicians understand what it’s like to be a patient.”
What would motivate someone who is undergoing cancer treatment, or has finished, to return to Dana-Farber for unpaid committee work and meetings at night? Why would the parent of a young child with cancer, whose work/family balance is already out of kilter, add council work to a hectic life? Michael Dodd, PhD, outgoing co-chair for the Pediatric Patient and Family Advisory Council, answers this with another question: “How do you walk away from a place that saved your child’s life?”
Giving back, making a difference, and easing the next family’s cancer journey are reasons often cited by “PFACers” for their dedication. In addition, in a place that emphasizes cure and survival, the councils have recently embraced the participation of families with a different outcome: loss. Christine Reilly, who lost her 5-year-old son to cancer, said at the councils’ 10th anniversary dinner Jan. 8, “Mikey was a survivor in his way. Because he received such excellent care, we had more time with him than we expected. We see our lives not in terms of what we lost but what we were given.”
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