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Patient Family Advisory Council

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Posted 11/30/2013

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Hope for the future - That's how Patricia Gottschalk describes the new Fred & Pamela Buffett Cancer Center. It is the reason she and daughter Shayla make the 10-hour round-trip commute from Hays, Kan. to participate in the Patient Family Advisory Council (PFAC) several times per year. Last November, Patricia's son, Shane, lost his battle with a rare form of non-Hodgkin's lymphoma. He was 21. Instead of feeling angry she is grateful. "During Shane's care, the doctors, nurses and techs did absolutely everything they could to save him. I just think the world of this place," she says as she reflects on the year she and her family spent at The Nebraska Medical Center. "Contributing to the PFAC is part of our healing process; I want to do anything I can so other families don't have to go through what we went through. This new facility symbolizes hope." Organized and facilitated by Ann Yager, director of Village Pointe Cancer Center Radiation Oncology, the council is comprised of approximately 25 cancer patients, survivors and caregivers and serves as a sounding board for our oncology program. While the diverse group ranges in age, diagnosis and background, they share one common thread -- they know what it is like to be affected by this terrible disease. From a unique patient perspective, the team considers campus building projects and provides input on web pages, educational materials, support groups and a host of other issues that directly impact the oncology patient population. Recently, the council has played an integral role in guiding the design of the new Fred & Pamela Buffett Cancer Center. Discussion topics range from departmental adjacencies to preferred interior color palettes. "This is a very collaborative process. It really feels like we are contributing," says Shayla, the youngest member of PFAC at age 19. In an effort to provide PFAC and hospital staff members with an accurate sense of functional space, true to scale plywood mockups of clinical rooms were built on campus. Building committee members guide the tours and explain what decisions have been made and why, while PFAC members and hospital staff voice opinions on what works and what could use a little tweaking. "Oh, we really got into it," says breast cancer survivor and PFAC member Lisa Cudley, as she describes the tours. "There was one point where we were wheeling wheelchairs in and out of the patient shower space saying, 'is this really realistic? Will this comfortably fit a patient and their caregiver?'" And the designers are listening. Input from the PFAC is shaping key functions of the new cancer center. After seeing the mockup design of movable walls between infusion rooms, the response to change the layout was overwhelming. Members felt the elimination of movable walls would create a more efficient flow and private space for patients and their families during lengthy infusion treatments. The current setup at the Peggy Cowdery Cancer Center served as a springboard for the debate. Coined "the fishbowl," the infusion rooms can feel more like a display case. While staff members like the accessibility of monitoring patients through all glass, wide-open views into rooms, PFAC members recalled feeling too exposed. As a result, the design evolution of infusion room doors in the new cancer center progressed from all glass, to half glass, and finally to a solid door with a side window. The current design offers ample views into the room for safety, yet provides the patient with a sense of privacy. "This exercise is challenging the way we think, the way we operate," says Jen Bartholomew, manager of Facilities Planning. "If we considered only the needs of our providers and what would be most operationally efficient, we would be doing our patients a real disservice. With the PFAC's involvement, we are putting the patient at the core of every decision." For PFAC members like Shayla, the changes being made send a powerful message. "They value our opinion. If we can use our experience and turn it into something good, something that truly helps other patients and their families, then we have done our job."