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Family Comes First


 

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?

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.

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.

To date, we have focused on measuring the challenges and successes of FCR implementation in academic settings. The emphasis on traditional teaching rounds has been at the price of the exclusion of defining what is family-centered when consultants or nonteaching hospitalists provide care, let alone nonphysician staff and outpatient providers. The emphasis on measurable data has subdued the powerful voices of patient and family stories. We have, predictably, created a hospitalist-centered agenda.

PFCC’s broad umbrella involves working with families at every juncture, from the design of your unit to the format of rounds to the outcomes of your study. True PFCC is measured by culture change and is successful when patients and families are surrounded by continuous healing relationships. By focusing efforts squarely on the implementation of FCR, I fear we may lose sight of a tremendous opportunity.

Pediatric Calling

Adult HM has turned a focus on quality and safety into a building block for the growth and acceptance of the field. Pediatrics invented and advanced the medical home concept, now a core principle of healthcare reform. PFCC is a central yet underdeveloped component of both of these parent organization efforts. Meanwhile, federally mandated public reporting of patients’ and families’ experience of care is under way, and hospitals are at varying stages of funding relevant initiatives.

These winds of change have created a fertile climate from which pediatric HM should blossom and lead. We can build upon our strong start in FCR, but we also must expand our efforts to lead in all directions. We must align our goals with administrative leadership, extend our work laterally to all other physicians and healthcare personnel, and elevate patients and families from subjects to collaborators.

FCR becomes a speed bump only if it is seen as a distinct and removable piece of PFCC. FCR accelerates change when it is embedded in the continuum of PFCC. Translating this vision into the language of strategic planning, a mission statement for the future of pediatric HM might look something like this:

Our strategy is to demonstrate our value to healthcare by leveraging FCR knowledge and expertise to generate a strong leadership presence at the forefront of the PFCC movement.

  • We will seek partnership with institutional, community, and national leaders to promote a unified and collective vision for change.
  • We will continue to accumulate not only data, but also powerful stories with which to effect change.
  • We will use our experience in interdisciplinary partnerships with families to engage early adopters from other domains of the healthcare system.
  • We will maintain a central focus on relationships and communication to effectively model culture change. TH

Dr. Shen is pediatric editor of The Hospitalist and medical director of hospital medicine at Dell Children’s Medical Center in Austin, Texas.

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