Moving Toward Person- and Family-Centered Care

INSIGHT on the Issues INSIGHT AARP Public Policy Institute Moving Toward Person- and Family-Centered Care Lynn Feinberg AARP Public Policy Institute Person- and family-centered care (PFCC) is an orientation to the delivery of health care and supportive services that addresses an individual’s needs, goals, preferences, cultural traditions, family situation, and values. PFCC can improve care and quality of life by its focus on how services are delivered from the perspective of the older adult and, when appropriate, his or her family. PFCC both recognizes and supports the role of family caregivers, who often are critical sources of support for older adults with chronic or disabling conditions. Person- and family-centered care What is Person- and Family- (PFCC) has gained attention in recent Centered Care? years as a mechanism for transforming health care and long-term services and PFCC generally refers to an orientation supports (LTSS). PFCC promotes to the delivery of health care and choice, purpose, and meaning in daily supportive services that considers an life, and supports well-being for older adult’s needs, goals, preferences, individuals and their families. cultural traditions, family situation, and values. It includes the person and the Although the concept of PFCC is gaining family1 at the center of the care team, prominence, it is not fully understood by along with health and social service many practitioners. In everyday practice, professionals and direct care workers. It PFCC has not yet been fully integrated also evaluates the person’s experience of across the health care and LTSS systems care. Services and supports are delivered as an essential part of all care and from the perspective of the individual support. However, the current shift in receiving the care, and, when payment reform and service delivery appropriate, his or her family. away from disease or provider-focused models and toward providing incentives The PFCC approach respects and that reward better coordination, meaningfully involves the older adult’s communication, and continuity of care is family caregivers,2 as appropriate, in the likely to promote wider adoption and planning and delivery of supportive effective implementation of PFCC. services. It also recognizes and addresses family needs and preferences, and While PFCC can be applied to people of integrates family caregivers as partners all ages, this paper focuses on older in care. adults with chronic or disabling conditions. It defines PFCC, explains the Person versus Patient rationale for using the term “person” rather than “patient,” and underscores Traditionally, the term “person” is used the importance of the family in a PFCC in LTSS, and the term “patient” is used approach. The paper also describes the in a medical and health context. The key elements of PFCC. term “person” rather than “patient” or Moving Toward Person- and Family-Centered Care “patient-centered care”3 is preferred people with chronic or disabling because it reflects the “whole person,” conditions, building on the strengths of including family, when appropriate, and family connections. emphasizes continuity of care and support, and quality of life. In contrast, ■ The family is the main source of help the conventional medical model in for older people with functional health care is organized around limitations in daily life. Researchers providers, specific diseases, episodes of estimate that two out of three care, and office visits to clinicians. (66 percent) older people with Person-centeredness looks beyond the disabilities who receive LTSS at medical and physical health needs of the home get all their care exclusively older adult. from family members, mostly wives and adult daughters. Another quarter The concept of person-centeredness and (26 percent) receives some person-centered planning can be traced combination of family care and paid to changes that took place in the early help; only 9 percent receive paid 1970s as part of the independent living help alone.7 movement, led by people with ■ Frail older adults often rely on disabilities. The movement—part of the family to help them negotiate broader movement for disability rights— interactions with health care and focused on the development of a social social service professionals. While system in which all people with some older adults want full control disabilities have the opportunity to lead over decision making, others may productive, meaningful lives as need or prefer to delegate decisions integrated and valued members of their to their family caregivers.8 communities.4 The attributes of a person-centered approach can be found ■ Family members and close friends as far back as the 1940s and the 1950s in often both provide and coordinate the work of psychologist Carl Rogers, care. Family involvement can who pioneered “client-centered” improve outcomes for older adults counseling.5 needing care and supportive services. For example, recent research shows Importance of the Family that family caregivers can help explain clinician comments and The term “person-centered care” alone instructions to the older adult during may not adequately capture the medical visits, and they can importance of family in the lives of older communicate information about their people. In 2009, family caregivers of loved one’s health conditions and adults with chronic or disabling functioning to health and social conditions provided an estimated 40.3 service professionals.9 billion hours of unpaid care at an 6 ■ Family caregivers are often the main estimated value of $450 billion. Without family caregivers, the health source for managing continuity of care and LTSS systems would be unable care. A consistent family caregiver— to meet the needs of older adults. across all transitions of care and care settings—will recognize his or her Family-centered care amplifies person- loved one as a whole person, not centered care by recognizing and focusing exclusively on a specific supporting the vital role of family disease, disorder, or episode of caregivers. It also addresses factors that hospital care. Family caregivers often are essential to good care for older are the older person’s “eyes and ears,” 2 Moving Toward Person- and Family-Centered Care recognizing changes in symptoms and their caregiving situation. This explicit function than may necessitate recognition is often family caregivers’ different care or supports.10 initial step in identifying and accessing supportive services for their loved one ■ Family caregivers typically need 15 information and support to function and maintaining their own well-being. effectively in their caregiving role. In some instances, providing good care They may benefit from education, may necessitate choosing among training, and access to other conflicting responsibilities, values, and caregiver support services, such as principles. In bioethics, with its respite care. Unless family emphasis on individual autonomy and caregivers are involved in confidentiality, there is increasing assessment and care planning, they recognition of the need for a family- may not understand what is expected centered approach in health care and of them in their caregiving role. LTSS to enhance mutually supportive ■ Social isolation—for both the family relationships among clinicians, service caregiver and the older adult— is providers, older adults, and their family 16 considered a risk factor in today’s caregivers. society.11 Caregivers who experience social isolation also experience high The interests and decisions made by levels of caregiver stress.12 Recent older adults and their family caregivers findings from the Stress in America may not always be the same. Differences survey show that family caregivers in the wishes, preferences, and capacity to aging relatives report higher levels of older adults and family caregivers can of stress and poorer health than the present ethical challenges to health care population at large.13 and social service professionals. Conflicts may also arise among family ■ Family caregivers of older people members of an individual older adult. with complex chronic care needs may Providers can use skills in listening, be vulnerable and at risk themselves. empathy, conflict resolution, and Ignoring family caregivers’ needs can mediation to help families cope and plan lead to burnout. When caregivers feel effectively.17 Holding a family meeting unprepared to carry out caregiving with a neutral facilitator or professional tasks and are overburdened, they may can mitigate disagreements, for example. risk their own health and impede their ability to provide care. Reducing Key Elements of Person- and caregiver strain can help to prevent Family-Centered Care in Practice unnecessary hospitalizations, and prevent or delay the use of nursing In practical terms, PFCC takes a holistic homes.14 approach to the individual and values the person’s stated preferences about what is Family members who provide care meaningful in the provision of care and typically do not self-identify as “family support.18 For example, it means that caregivers.” They often are invisible to older people can have control over when, health professionals and excluded from where, and how they do things; express the care process. In PFCC, health and preferences for the services they receive social service professionals play a and who provides the services; are able to central role in helping family members wake up and go to bed when they like; and friends of older adults—be they celebrate

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