Chapter 7. Patient and Family-Centered Care

The philosophy of patient and family-centered care is founded on the belief that health outcomes are improved by partnering among health care providers, patients, and their families. This belief permeates the health care system and does not represent a specific therapy that is applied as part of a treatment plan. The patient/family-centered care (P/FCC) approach affects nearly every interaction and decision in our health care system. In the literature, there is no uniform definition of patient and family-centered care. Therefore, it is best described by its fundamental principles: respect and dignity, information, participation, collaboration, and flexibility.

Respect and Dignity

Treat each family with respect. Although individual physicians and nurses typically are respectful in their interaction with patients, the health care system was not designed to afford dignity and respect to patients. The system often values providers’ needs and time over that of patients (waiting rooms, double-booked schedules, etc). Patients are often referred to by numbers or diagnoses. Patients in a hospital setting are often asked to wear uncomfortable clothing and are subject to rules beyond their control. Many of the routine policies and procedures that seemingly disregard patients’ comfort and dignity are now changing. Treating patients and families with honor, addressing them as they wish to be addressed, asking permission to examine, and learning about their strengths and human history in addition to their medical history exemplifies this core principle of respect and dignity. Consideration must be given to physical comfort and modesty of patients and families. Families must be included in discussions regarding their care and treatment plan. This was successfully accomplished at one major children's hospital by instituting a system of “family-centered rounds” that included the family in all discussions and planning decisions regarding diagnosis and care. Family and care team satisfaction improved.1

Information

Access to health information is a basic right of patients. Implementing the patient and family-centered care philosophy involves transfer of control of information from the health care system to the patient and family. Respecting the absolute confidentiality of information as it is used by the health care system is imperative.

Traditional paper charts kept separately by each provider and hospital are being replaced by interconnected electronic health records and databases. As the electronic system is implemented, designers are faced with the decision of who “owns” the information. Many hospitals now give patients complete access to their charts during a hospital stay. Some give the patient control of all information, and the patient or family grants access to hospitals or physicians. This is particularly helpful for families of children with chronic conditions who previously needed to wait for busy professionals to contact them with test results. They worried about delays in care and information being overlooked. Access promoted improved self-management and interaction with providers.2 The Internet allows patients to have nearly the same access as physicians to the health literature. Patients and their families are coming to expect access to all pertinent information. Not all patients read available literature, but most want the access. Access also includes information regarding the performance of the health care system, such as comparative outcome data and patient safety issues. More expectations are being placed on the health care system to increase transparency and share outcome results with the public.

Participation

Perhaps this principle can best be summed up by the phrase “Nothing about me, without me.” Families and patients have the fundamental right to make decisions regarding their care. Therefore, families need to be presented with choices. Shared decision making is gaining attention as an important aspect of caring for children with chronic and serious conditions. Increasing emphasis is placed on presenting information in a clear manner and allowing patients to make choices when they desire. Involving families actively in making choices regarding care approaches appears to improve engagement and compliance.3

Collaboration

Collaborate with families to improve the health care system. Many health care organizations have found families are a great resource of energy and expertise that often goes underutilized. Most pediatric hospitals have developed family advisory councils; some have patient advisory councils for teens. Families are more frequently becoming members of governing boards of hospitals. Several hospitals have families serving on quality improvement teams and facility design teams. For individual patients, there is increasing awareness of the benefits of support by family and friends during acute hospital stays. In addition, there is support from the literature that parent-to-parent support may be crucial for families whose child has a chronic or serious condition. Parents state that fears and anxiety can sometimes be better allayed by parents who have experienced similar situations.4

Flexibility

It is important to recognize that illness places a significant burden on families. To truly partner with patients and families, systems must be flexible and address families’ and patients’ unique circumstances and needs. Offering expanded and flexible hours for office visits, tests, and even surgery may be necessary. Of course, the needs of the families of physicians and nurses and staff must also be considered. Some chronic care clinics are allowing patients to determine the content and focus of a clinic visit. Most patients choose the routine aspects of a visit, but some have more individual needs. Alternative methods of interacting with patients are becoming common place. Phone visits, e-mail advice, text messaging, and alternative sites of care (eg, school-based health centers) all allow for flexibility. More patients want to use alternative medicine. Physicians must be flexible in accommodating the choices families make. In hospital settings, flexibility that allows increased control of daily schedules by the patient can both assure that appropriate care is provided in a timely manner and can empower patients to become more engaged in their care. This is of particular value for care of adolescents with chronic disorders requiring frequent hospitalization such as cystic fibrosis.5

As entire organizations, health care clinics, hospital units (microsystems), and individual providers work toward the principles of patient and family-centered care, a paradigm shift takes place (Table 7-1).

Implementation of Patient and Family-Centered Care

Because each practice, clinic, and other health care facility has its unique norms and culture, the approach to implement the philosophy of patient and family-centered care must be customized to the environment: There is no one-size-fits-all approach.

To ensure sustainability of your patient and family-centered care strategies, a 3-pronged approach is recommended. Strategies must be aimed at the strategic or organizational level, the microsystem or point-of-care level (eg, on the unit, in the clinic), and the individual practitioner level. Short-term gains may be achieved if one of these levels of care is targeted in a specific clinical setting but families can become frustrated by variances in care approaches across an organization. Thus, full implementation of a patient and family-centered care approach requires organizational change, as discussed in the additional material provided electronically. Ideas for establishing a culture of patient and family-centered care are presented in eTable 7.1.

Strategic or Organizational Level

On an organizational level, support from senior leadership is a key component of success. Identifying executive champions, including the chief executive officer, chief nursing officer, and chief of staff, enables a culture change that is solidly built on the principles of patient and family–centered care. This group of leaders sets the tone for the organization by weaving the core concepts of patient and family–centered care throughout the vision and mission statements and strategic plans. Families, physicians, and staff should collaborate in the design of behaviors supporting the concepts embedded in the strategic plan.

Partnering with patients and families at the organization level can be realized in many ways. Collaboration is recommended for any point at which families interact with the health care system. Such collaboration might mean family involvement in areas as diverse as policy and procedure development, human resources practices, and facilities renovation and design.

At the strategic level, “more is better” in terms of family involvement. Consider a high-level family and/or patient advisory council. These groups should play an active role in designing strategies to support the family role while children are hospitalized (eg, a monthly “Family Friday at the Movies,” where hospitalized children and their families meet for popcorn and a movie in the hospital auditorium), in selection and design of electronic health records, and in the development of statements of hospitalwide core values. In addition, standing committees benefit from the perspective that family members bring: infusing a dose of reality into discussions about wrong-site surgeries at patient safety meetings or helping staff design the process of family engagement in child safety. Families have been an integral part of many quality improvement initiatives: from discharge planning to improving the care of patients with cystic fibrosis. When working with patients and families in an advisory capacity, consider allocating resources for stipends for family involvement to cover their travel and childcare costs.

Microsystem or Point of Care Level

Strategic P/FCC expectations are operationalized at the microsystem level: whether on a nursing unit or in a clinic. Leaders of the microsystem must embrace the P/FCC philosophy, create a culture where patient and family–centered care can flourish, identify champions on the unit, hold staff accountable to actualize the P/FCC behaviors, and celebrate successes. Unit leaders and staff partner with families on microsystem-specific quality initiatives. Systems must be put in place to support staff both during the transition to patient and family–centered care and in coping with challenges as they arise.

An implementation plan should be established: Set measures, design strategies, celebrate successes, and aim for sustainability. The implementation plan usually begins with education on the core principles. Educational content shared with all levels of caregivers and utilizing many approaches has been found to be successful. Consider inviting family members to staff meetings to tell their stories, highlight an actual family experience demonstrating exemplary patient and family–centered care at monthly staff meetings, and conduct physician and nursing grand rounds. Education must be ongoing because of staff turnover and the need to reinforce positive behaviors. Consider reinforcing the concepts of patient and family–centered care in all staff educational offerings as appropriate.

Measurement of progress over time is key from both quantitative and qualitative perspectives. Consider both overall measures of patient and family satisfaction with their involvement in care (eg, “Did the staff listen to your concerns about your child?”) and specific measures of unit strategies (eg, “Was the adolescent involved in the daily plan of care discussions at the bedside?”). Staff satisfaction should also be considered. Having staff define and interpret their practice within the framework of patient and family–centered care can be helpful. Informal discussions about challenging situations help the staff to understand family behaviors and coping mechanisms during stressful times and to identify family strengths. Repeating these discussions over time enables staff to take a proactive approach and equips them to support family choices where appropriate.

To maintain enthusiasm for patient and family–centered care, celebration of both small and large gains is important. When individual practitioners are “caught” demonstrating top-notch patient and family–centered care, consider a written award highlighting their practice. These awards can be displayed for all to see. Especially meaningful for staff is when family advisors arrive on the unit and distribute a small token of appreciation to them, such as a poem or a rose made of chocolate kisses.

Sustainability of progress involves incorporating P/FCC principles into work processes. Patient and family–centered care is not a separate entity: It is how health care business should be conducted every minute of every day. Decisions on a personal level, a unit level, and an organizational level need to be made within the framework of patient and family–centered care, not alongside it.

Individual Practitioner Level

It is imperative to remember that the health care experience is chosen by the health care providers and imposed upon families. The providers, not the family, are the true “visitors” in the child’s life. To a great extent, the family role is regulated by the staff. To change the role of the family, individual practitioners must first change their own approach and role. For example, all interactions with patients and families must emanate courtesy and respect: Staff members treat the patient and family the way they themselves would want to be treated; they maintain eye contact during conversations and address patients and family members by their preferred name.

Staff must support the family/parental role at the point of care. Parents bring to the care experience their intimate knowledge of the child’s responses, cues, and patterns of behavior. Staff must recognize this strength, capitalize on the family’s knowledge, and partner with the family in the care of the child. Parental choices for involvement in the child’s care need to be explored, supported, and communicated to all caregivers. Parental involvement might range from administering a medication to being present during resuscitation in the emergency department or intensive care unit. On an ongoing basis, families need to have opportunities to share their insights, observations, and questions. While their child is hospitalized, this might involve charting in the medical record or being an active participant in daily rounds.

At the individual practitioner level, information that families need and want must be provided. With a wealth of information at the public’s fingertips through the Internet, discussions about value-added information are more important than ever. Individual practitioners must develop a new appreciation of the effort involved when a family hands them a stack of computer printouts on the information they have researched and the plan of care they are proposing. Practitioners should recognize this as the new way of doing business and view it as an opportunity to learn and to collaborate on a different dimension.

An important challenge in implementing patient and family-centered care in many health care environments is how to train new providers—medical students, residents, nursing students, and other allied health trainees—to deliver care that is patient and family centered. Part of the challenge is in introducing new personnel to the patient and family-centered care philosophy, which likely differs from their previous training, while another part is the frequent turnover of new trainees. The experiences of a growing number of centers provide some principles and specific techniques for teaching patient and family–centered care. The old paradigm in medical education—“see one, do one, teach one”—applies, in part, to learning the principles of P/FCC. Trainees need to observe the approaches used by skilled practitioners in this care setting, be given the chance to demonstrate their evolving skills, and, perhaps most importantly, be given concrete feedback about their skills and performance. Many health education credentialing bodies now mandate direct observation and feedback about professionalism and communication skills, and patient and family-centered care skills should be included in these mandates.

In teaching patient and family-centered skills, old didactic methods are insufficient. But before considering alternative methods, it is worth noting a common but often unspoken critique of attempts to “teach” providers how to be more patient- or family-centered: Much like the mythical “art of medicine,” a trainee either “has it” or does not. However, multiple health educators have taken on the challenge over the years of teaching the “art,” or the “it.”

In this tradition, Dr. Steven Miller developed a theoretical framework for medical education to make humanism more of a “habit” for trainees. His approach is delineated in Chapter 3, and applies equally well to teaching principles of patient and family–centered care. To extend the humanism framework to education in patient and family–centered care trainees must be placed in situations in which they can identify a patient’s and family’s perspective—concretely. Teaching is therefore best done at the bedside, where a more experienced provider can demonstrate how to identify the family’s perspective. Then, trainees must be asked to reflect on and identify potential conflicts between their own and their patient’s or family’s perspectives—trainees need to be regularly engaged in this conversation using concrete examples from their daily work. Finally, education within a patient and family-centered care-focused environment requires a universal expectation that all staff and trainees act in accordance with these principles of care. Behaviors that are patient and family centered become normative, and both informal and formal evaluation and feedback take these behaviors into account.

Multiple practical methods of teaching principles of patient and family-centered care have been described. Family, faculty, parents, and caregivers of children with chronic medical needs can be utilized in a variety of instructional methods: as lecturers, small group discussion leaders, participants in role plays, and hosts of home visits.7 Their participation in multidisciplinary bedside hospital rounds (often called family-centered rounds) also facilitates learning of patient and family-centered care principles,8 as does bedside nursing change-of-shift handoffs.9 Both techniques blend previously separated functions of teaching and working to create a care environment in which the patient and family are the center of and included in conversations about both care and teaching.

A curriculum to introduce learners to the core principles of patient and family–centered care is a worthy undertaking. A powerful adjunct to, and perhaps replacement of, typical lectures or question-and-answer sessions is the use of anecdotes to illustrate patient and family-centered principles. Ideally, these stories come from day-to-day experiences within the care environment and are shared during the course of regularly scheduled educational or even staff organizational meetings to allow for interaction between audience and storyteller.10

Finally, patients and families should be included in the learner evaluation process. Incorporating patient and family evaluations into formal evaluation and feedback processes provides perspective beyond that gained by direct observation by instructors and can lead to improved overall skill and performance.1,10,11