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.

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 family-centered care include recognizing the importance of community-based services, encouraging family-to-family support, and celebrating successes.^1,13 Patients and families identify somewhat different aspects of family-centered care as paramount compared with physicians. Patients and families report availability and accessibility, communication, partnership, timely and specific information, advocacy and coordination, and education and counseling.² Physicians, in contrast, identify education and counseling, information, policies, emotional support, common goal setting, and coordination as paramount.² These lists have considerable concordance, but opportunities remain for consensus building.

Delivering family-centered care is a desirable outcome unto itself, but it also has beneficial impacts on patient-important outcomes such as fewer emergency room visits and satisfaction with care delivery.^10,14,15 The value of strong family-provider partnerships (the hallmark of family-centered care) is evidenced by higher patient and family satisfaction, better access to specialists, more stable health, receiving more help with care coordination, fewer unmet needs, fewer emergency department visits, and fewer missed days of school for children with special health care needs.^13,15–17 Effective chronic care delivery, the focus of many physiatrists’ practices, should be both family centered and evidence based.¹⁴

Unfortunately, family-centered care is underimplemented. The patients and families who could benefit the most from shared decision making and family-centered care are often less likely to receive it.¹⁸ For example, just over half of families of children with disabilities reported family-centered care compared with 68% of children with other types special health care needs.¹⁹ Family-centered care is difficult to achieve in a health care system in which volume drives reimbursement. For family-centered care to be successful for health care providers, patients, and families, the family-centered values must be embraced at the organizational level by leadership.² There is a mismatch between traditional practice models and the needs of patients with chronic health problems.^14,20 Focusing on the whole person instead of the diagnosis means integrating the patient’s and family’s values, preferences, and circumstances into care planning and delivery at all organizational levels.¹⁴ Family-centered care may be ideal but unrealistic in typical practice settings because providing family-centered care may take longer in a clinical encounter. Health information systems need to be adapted to allow for simple collection of enhanced patient information that is organized in a useful way and is easily accessed for family-centered care and shared decision making to be optimized.¹⁰

While family-centered care may seem more expensive to the organization because it takes more time during encounters, it can be cost-effective in the long run and therefore strategically beneficial.² Additionally, the provider-family partnership challenges the paternalistic paradigm of unilateral responsibility of the physician to make decisions about care.¹² Physicians still feel more comfortable in the more traditional medical model, in part because they haven’t been trained to address psychosocial issues and may feel less skilled in the communication strategies necessary for family-centered care.² Luckily in rehabilitation medicine, providers tend to be collaborative in nature and often have longitudinal relationships with patients and families that can strengthen partnerships, trust, and communication. This is especially important in the era of decreased trust of the medical establishment.²¹

Inpatient Rehabilitation

In rehabilitation, family-centered care can be implemented in many different settings. On the inpatient rehabilitation unit, rounds, conferences, and discharge planning can be reconfigured to be family centered. Team-based family-centered rounds should provide a sense of common purpose, a sense of collective and personal power, opportunities for active listening and shared leadership with explicit problem solving, and respect for each individual, with high value placed on collaboration and negotiation.¹ In this model, patients and families share the development of the management plan with the interdisciplinary team. There are opportunities to identify concerns and answer questions. For the various aspects of the management plan, shared decision making may occur with more or less involvement of the patient and family. For example, the treatment of a urinary tract infection for which the organism sensitivities are known is relatively straightforward and should require minimal discussion. Conversely, the decision to place a baclofen pump requires a much more extensive discussion and a collaborative decision-making process that involves an explanation of the risks and benefits, alternative treatment options, and the likely outcomes of the potential treatments. Family-centered rounds are a place to ensure that the patient and family are satisfied with the treatment plan, determine whether there are barriers to continued success, and actively problem solve.¹ Family-centered rounds are also an excellent place for bedside teaching.^22,23 This educational opportunity extends to the patient and family and can help solidify their understanding of the ongoing issues, but if not done properly, it could add to confusion.^24,25 While concern has been raised that families would be uncomfortable with bedside teaching, there is extensive evidence to the contrary.^22,25,26 Discharge planning is another opportunity to reap the benefits of family-centered care because it has been associated with better discharge outcomes.²⁷ This can be achieved as an extension of rounds or as its own process with a subset of the interdisciplinary team.

Although patients and families are not typically present for weekly team conferences, they could be incorporated into the process. This could occur either by inviting them to be present or, in situations where incorporating families into team meetings does not seem feasible, by ensuring that the patient’s and family’s voices are heard through communication with the social worker, case manager, or other appropriate team member. Other options that do not involve participation in team conferences but enhance family-centeredness include creating patient and family advisory boards and family support groups.¹² In pediatric rehabilitation, the family-centered model of care is more pervasive than in adult rehabilitation. Most inpatient pediatric rehabilitation programs already have families present for the initial evaluation and planning meeting that sets the stage for the rehabilitation stay, but this does not occur as frequently in adult rehabilitation. Additionally, pediatric rehabilitation programs also frequently have family meetings and extensive family training in preparation for disposition. For rehabilitation centers interested in advancing family-centered team conferences or rounds, a quality-improvement project that involves time tracking, goal attainment, and patient and family satisfaction could help determine the value of family-centered care.

Ambulatory Rehabilitation Medicine

Family-centered care is the standard of care in ambulatory medicine and is especially valuable in chronic care.² Family-centered care is a key component of the medical home model of care.^28,29 While rehabilitation medicine physicians do not tend to practice in a medical home model, they are important health neighbors and can enhance the care they provide by embracing family-centered care concepts.²⁹ The Maternal and Child Health Bureau has identified six provider actions that indicate family-centered care in the ambulatory setting from the family’s perspective. These actions are applicable to adult rehabilitation medicine as well. The provider actions are (1) spending enough time, (2) listening carefully, (3) being sensitive to family values and customs, (4) providing specific information when needed, (5) making the family feel like a partner, and (6) providing interpreter services if needed.^12,30 Over time, patients and families develop increasing expertise in dealing with chronic health conditions, so their need for information changes. Productive chronic disease management ensures delivery of evidence-based treatments in tandem with patient self-management and activation.¹⁴ Additionally in the ambulatory setting, physiatrists are often called on to advocate. This activity falls within the larger rubric of family-centered care because family-centered care includes addressing the milieu (social, cultural, spiritual, political) in which individuals with disabilities function and live.² The social system needs to encourage participation instead of stigmatizing disability, and the political system needs to provide affordable insurance, financial supports, and policies that remove environmental barriers.² Physiatrists are key proponents for access, equality, and opportunity for individuals with disabilities.

Patient/family–provider partnerships provide the scaffolding of family-centered care and are key for successful shared decision making, an essential aspect of family-centered care.⁷ At its core, shared decision making is an interactive process in which patients and families and providers simultaneously engage in all aspects of decision making to arrive at a decision or treatment plan.^31,32 The key features of shared decision making are (1) information is shared bidirectionally between at least two parties, (2) both (all) parties are aware and informed about options, and (3) both (all) parties bring their knowledge and priorities equally into the decision-making process.³¹ It is not, as some providers erroneously think, a means to encourage the patient and family to accept the provider’s preferred treatment path.³³ It is also not leaving the decision in the hands of the patient and/or family; both parties have mutual responsibility.³⁴ Shared decision making does not absolve the provider of his or her role. The provider’s expertise is critical and cannot be absent from the process. The provider has the responsibility to advocate in the best interests of the patient using his or her knowledge and expertise to offer treatment options and discuss the risks, benefits, and probable outcomes. The role each partner plays in the decision-making process should be discussed and agreed on. The roles may change over time based on circumstances and preferences.³⁴ Table 69–2 provides three different sets of steps of shared decision making that the provider can use to improve his or her comfort with shared decision making.

The evidence for the value of partnerships and shared decision making is strong. Partnerships are associated with more efficient use of services in multiple randomized, controlled trials.¹³ The use of shared decision making is associated with improved patient and family satisfaction, treatment plan adherence, and health outcomes.³² Collaboration has been shown to improve engagement and intervention outcomes in pediatric rehabilitation.¹⁷ Patients and families who participate in decision making are more likely to follow through with the agreed-on plan.²⁰ And although shared decision making may take longer in a clinical encounter, it can be more efficient in the long run due to improved health outcomes.³⁴ The use of decision aids, which provide unbiased information in various forms, and improved health care professional training may help assist the uptake of shared decision making in clinical practice.³⁷ In fact, due to the identified value of decision aids, the Affordable Care Act requires the Department of Health and Human Services to develop, test, and disseminate patient decision tools.³² To date, most decision tools are geared toward adult conditions, but internationally endorsed criteria to guide decision tool creation exist.³⁸