I participated in a panel presentation yesterday at UCSF Benihoff Children’s Hospital. There were four parents on the panel. Each has a child who is/was a patient at the hospital. All four of us are members of the Family Advisory Counsel for the hospital and making these presentations is part of our “Parents as Educators” program. The audience was hospital staff, including all level of doctors, from resident to the medical director, nurses, therapists, child life specialists, social workers and other staff. The audience seemed interested and engaged as each of us answered questions and gave them the view from the “other side”
The presentation was called “Meet the Quarterback” referring to parents as the play callers in the child’s care. The name came from something I said at a meeting some time ago. The discussion involved making sure staff was welcoming parents or caregivers as part of the medical “team.” I said, “They want to make me part of the team but what they don’t understand is that I’m the head coach.” They loved that crack because it was obviously coming from a completely different perspective. "Head coach" became "quarterback" to avoid offending any doctors who are under the (mistaken) impression that they are the head coach.
Medical personnel change all the time, especially at a large teaching hospital like UCSF. If your child has a chronic issue, you better be prepared to provide necessary information to new practitioners. If your information is not accurate or up to date, your child may have to endure unnecessary or repeated procedures. It helps everyone, especially the child, if the parent is part of the team.
Not every parent is the quarterback (or head coach) or wants to be. They happily cede all decision making to the doctors. I would venture to guess, however, that is not often the case when a child has chronic problems. Though many parents may not speak English or have cultural differences that preclude them from taking part, they are still parents and they know their child better than anyone else does.
We tried to impress upon the audience the pressures of having a sick child and especially the sick child they see in the hospital is not the whole person. Maggie’s disabilities and conditions are part of her but they do not define her. It is just one part and the doctors (et al) bring their expertise to that one part. The parents have to balance the illness with the rest of the child’s life and that of the rest of the family, including other children.
The panel addressed how they have been empowered as parents to assume the quarterback role. The answers were as varied as our children and their conditions, but each of us could point to a time where someone said, simply, you are the mom, you know best. I told them the moment that happened for me when Maggie was a very small baby.
I have not shut up since.