Each time I read an article like the one describing clinicians at Children’s Hospital of Philadelphia’s recent achievement in meeting the needs of a patient with autism, it reminds me of what is possible and how far we have come in health care. The report described the collaboration with a patient with autism whose effort to master her environment included having her service dog push her sedation medication in a specially prepared, preprocedure room.1 Ten years ago, we would not have seen such a report. If we did it, we would likely have received criticism of the physicians for ceding control based on the whims of a patient. Questions about the appropriate use of resources used to make it possible might have arisen as well. The cultural shift in pediatric medicine, stimulated, in part, by the patient and family-centered care (PFCC) movement, now encourages us to appreciate the value of this young person’s input into her sedation administration plan so that she could recall the comforting presence of her familiar service dog and her ability to maintain control, rather than an anxiety-filled space full of strangers.
Before hospitals and anesthesia teams opened the door to partnering with families with specific ideas about care strategies for their child, opportunities like this were often missed. In our own hospital, in 2002, a patient family sought to modify the environment for their daughter’s diagnostic radiology procedure. The family requested a video cassette recorder and monitor in the room so their daughter could be distracted by a particular favorite video. This distraction, they explained, would enhance her ability to cooperate and improve the test experience for the patient and the clinicians. To accommodate the request, weeks of negotiation ensued between the parents and the administrative and medical leadership. The family was ultimately given permission for their plan but was expected to bring a personal, portable television and video cassette recorder. It was a triumph for the patient despite the inconvenience and expense to the family. Everyone learned a lesson that day. This patient who previously had been unable to cooperate and presented real challenges to completion of the necessary study was able to maintain her composure and ignore the procedure. Today, the same radiology department embraces the value of alternatives for distraction and offers a multisensory experience to distract children who undergo similar procedures. Magnetic resonance imaging happen at “Camp Cozy” and kids go on a “Jungle Safari” through the employment of visual, olfactory, auditory, and decorative camouflages, which distracts them from the medical equipment and the procedure. Patients are empowered to cooperate by virtue of the distraction installations and engagement with their own imagination. Returning patients look forward to the chance to enter these special rooms and do so without fear. Sedation rates for procedures have plummeted, and individual needs are a part of the preprocedure triage process to further customize the experience.2 On tours of this remarkable area, visiting physicians and community leaders most frequently ask, “Why don’t they have this for adults?”
PFCC challenges clinicians regardless of typical or special needs of the patient to offer care that incorporates personal preference, values, and strategy for self-management. The expectation of safe, effective medical care is a given for most patients and families. It is, however, more often the experience of respect and compassion that is recalled about a hospital stay or procedure. To achieve this, the principles of PFCC serve as a reliable guide:
Respect and Dignity
Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care.
Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information to effectively participate in care and decision making.
Patients and families are encouraged and supported in participating in care and decision making at the level they choose.
Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.
Language matters as well. Consider common medical rhetoric when patients are referred to as their diagnosis, location, and gender. It categorizes the patient and can unintentionally deprive the clinician of the opportunity to acknowledge their individuality and customize the experience. Referring to patients as their diagnosis is depersonalizing (e.g., “the fever neutropenia in 632”) and referring to the adult female in the room as “Mom,” assuming her relationship to the patient, can lead to errors in information sharing. When labels and judgment are avoided and principles of PFCC guide our communication, a patient family’s concerns, values, reactions, and needs can be solicited, honored, and responded to with sensitivity and respect for the intimate nature of the care experience. The exchange between the patient and clinician then incorporates the respective areas of expertise. The family can speak to their style, needs, and values and the physician to the medicine and the options available for care.
Formatting the customer experience was a tempting direction to pursue when health care began in earnest to address family suggestions to improve care experiences including families and patients seeking alternatives to traditional approaches to sedation. PFCC, however, is not a customer service program. In a hospital where PFCC is practiced, the approach to care seeks to customize, rather than routinize the experience. It challenges us to partner fully with patients and families by relinquishing dominance in the relationship and replacing it with partnership and exchange. In an interview in November 2012, Andrew Urbach, MD (Professor of Pediatrics, University of Pittsburgh School of Medicine and Associate Chief Medical Officer for Clinical Excellence and Service at Children’s Hospital of Pittsburgh of UPMC) offered a perspective on the influence of PFCC principles in his own practice, “When I reveal that I am not infallible by asking a family to review and correct my visit summary, we forge a relationship based on shared responsibility. Openness, trust and teamwork begin to emerge. In listening and respecting what every family brings to the interaction, care is elevated.”
PFCC began as an effort on the part of parents of neonates to hold their nurses and doctors accountable to regard them as a family. They sought to contribute their love and desire to learn their child’s condition and care in an environment open to their participation. In the process they helped improve practices in neonatal units and among the clinicians who recognized and documented the positive and powerful influence a parent could have on a neonate. Through the contribution to care of that child that parents need to make, partnership could be established and length of stay diminished.3
An increasing number of published articles report the benefit to patients and organizations of adopting PFCC approaches to care delivery. From improved safety performance, to reduced infection rates to the enhanced ability to carry out detailed discharge instructions, patients and families who are engaged, educated, and involved may contribute to improved clinical outcomes.4 The impact of the values associated with PFCC principles in health care organizations are being documented as well. According to a November 2012 report from Kurt Stillwagon, Director, Recruitment, Children’s Hospital of Pittsburgh of UPMC, over a period of almost 2 years, applicants for employment were screened using an assessment tool measuring, in part, values consistent with PFCC. Low scoring applicants were excluded from consideration. Early measures of success were encouraging. The rate of turnover dropped from 11.9% in 2010 to 7.1% by 2012, and the new hire turnover rate (<1 year) dropped from 29.96% in 2010 to 6.3% in 2012. The promising improvement in turnover rates led the organization to conclude that an employee who shared a value system that reflected PFCC principles was less likely to leave employment. It is hoped that the reduction in costs associated with turnover and the increased tenure of the staff may enable the organization to advance the practice of PFCC beyond the basic framework and improve the patient experience. Numerous evaluations of the relationship on patient satisfaction demonstrate that high employee satisfaction is a strong predictor of patient satisfaction.5
So is it patient and family satisfaction or safety, quality or employee satisfaction, culturally sensitive care, or strong patient and family engagement we’re after? It is all those critical elements of care delivery that clinicians and health care organizations hope to achieve. The care we provide ideally reflects the dignity of the journey each of us will travel in life when our bodies betray us through sickness or injury or original condition when PFCC principles are employed. As we continue to move in a direction where an increasing amount of pediatric medical care is delivered on an outpatient basis, posthospitalization or in the home another important feature of PFCC may truly emerge. The partnership established in the hospital setting, and even before that, in the physician’s office, could be a predictor of how well a patient and their family is likely to follow the plan of care and ask for help when it’s needed. When health care goals are mutually established between patient and physician and patient/family choices are incorporated into care, we understand PFCC as both a business imperative and more importantly, the right thing to do.
Name: Elizabeth H. Lewis, MEd.
Contribution: This author helped write the manuscript.
Attestation: Elizabeth H. Lewis approved the final manuscript.
This manuscript was handled by: Peter J. Davis, MD.