I recently returned from a seminar where I sang “Kumbaya” (OK, maybe I hummed) and performed a skit in front of the 250 other participants. Having once been edited out of my own end-of-residency movie, you might think this was Acting 101 for the next Shen’s Anatomy. Rather, this was “Hospitals and Communities Moving Forward with Patient and Family-Centered Care.” Replete with experiential lessons in positive change, it transformed my vision of the future for patients, families, and our field.
Patient- and family-centered care (PFCC) is a movement rooted in the values at the core of our profession. As soon as the hunter-gatherers formed communities, a village healer emerged. Parents could turn to the healer for help when a child developed bronchiolitis. With similar amounts of hand-waving, these healers produced outcomes similar to current bronchiolitis care.
But what once was a simple relationship has become fractured through relentless de-evolutionary forces. Progressive specialization has exponentially increased the number of healers. The rapid, paternalistic injection of science and technology overwhelms even the most capable of Homo sapiens. The final product can be as cold and sterile as a modern-day operating room.
Amidst the labyrinthine tangle of providers, information, and facilities, there is a warm underglow of hope. Unless you’ve been hiding under the concrete foundation of the old part of your hospital, you’ve heard about family-centered rounds (FCR). It’s the new black, or the new steroids, of pediatric HM. And it carries with it the potential to be the bellwether of change.
A simplistic view entails moving teaching rounds from the conference room to the bedside. Throw in a multidisciplinary component and you have a theoretical therapeutic milieu from which all manner of positive education and patient outcomes might be measured.
But one must ask the question: Can creating patient- and family-centeredness really be this simple?
Work with Families
Let’s begin with definitions. At one end of the spectrum is system-centered care (SCC). In this system, family members are denied access to the recovery room because it’s easier for the post-operative staff to do their work. Children wake up terrified? Tough. SCC is what the system does to you.
The next step on the developmental continuum is patient- and family-focused care (PFFC). Providers work for the benefit of the patient and family. You transport your gaggle of learners to the bedside for each and every family. You do it for everyone because you believe it’s best for the patient. You do it … until Tyler, age 9, tells you that your intimidating team gives him ulcers, perhaps literally.
What I thought was PFCC really was PFF, at best. By imposing my form of rounds on each patient and family, I had left out a key tenet of PFCC: collaboration. PFCC is partnering with patients and families. A simple fix for rounds would be to ask each patient and family how they would like to be involved.
Then again, just as a family is not easily defined, FCR is not best viewed in light of its structural composition or mechanics, but in its ability to deliver what each individual patient and family desires. And given the alacrity with which research in our field has gravitated toward FCR as a clean, measurable intervention, the implications of an FCR-dominant agenda should be highlighted.