Chapter 69: Family-Centered Care and Shared Decision Making in Rehabilitation Medicine

INTRODUCTION

Family-centered care is a partnership between patients and their families and the health care system. It is an approach to care that encourages shared decision making in which patients and families are engaged with health care providers to come to a decision that addresses risks and benefits as well as patient and family preferences, values, and circumstances. Family-centered care is an important part of value-based care that focuses on improving outcomes, satisfaction, and efficiency. This chapter reviews family-centered care and shared decision-making principles in the context of rehabilitation care. Although the related term, “patient-centered care,” is frequently used interchangeably with family-centered care, this chapter will use family-centered care because in rehabilitation medicine as in pediatrics, families are often heavily involved in decision making. Families may consist of traditional family units or other social units in which involved parties have a shared social commitment to the mutual relationship.

OVERVIEW OF FAMILY-CENTERED CARE

Family-centered care has its origins in the 1950s and 1960s but has only recently been considered the standard of care for all patients.^1–3 Family-centered care remains aspirational in many settings, and unfortunately, disparities exist in the delivery of family-centered care.^4,5 As an approach to care, family-centered care is recognized as integral to patient satisfaction, health, and health care quality by multiple agencies, medical societies, and institutions. The Maternal and Child Health Bureau's mission is to “provide and promote family-centered, community-based, coordinated care for children with special health care needs and to facilitate the development of community-based systems of services for such children and their families.”⁶ The Institute of Medicine's report, Crossing the Quality Chasm: A New Health System for the 21st Century, called for health care to be safe, effective, patient-centered, efficient, and equitable.⁷ In this model of care, patient and family involvement is considered central to clinical decision making.⁷ Professional societies, such as the American Academy of Pediatrics, promote family-centered care as a standard of care.⁸ The Agency for Healthcare Research and Quality promotes care that is relationship based with an orientation toward the whole person and an understanding of his or her unique needs, values, and preferences.⁹

From the perspective of the clinician, family-centered care is characterized by treating patients and families with respect and dignity and sharing information so that patients and families can make informed decisions with them about goals and treatments. The partnership between the patient and family and the clinician is the cornerstone of the family-centered care relationship.¹⁰ In the family-centered care relationship, the clinician listens, demonstrates empathy and compassion, and incorporates the family's priorities in the clinical encounter.¹⁰ Individualized flexibility and responsiveness are necessary to engage in shared decision making to achieve desired outcomes.¹⁰ Table 69–1 details the basic tenets of family-centered care adapted from multiple sources.^7–9,11,12 Additional characteristics of ...