A recent article in Public Policy and Aging Report looks at the importance of person- and family-centered care (PFCC) when individuals and their families are facing decisions related to advanced illness and nearing the end of life. The PFCC approach looks beyond the medical and physical needs of an individual and recognizes that their needs, goals, preferences, cultural traditions, family situation, and values are “all essential pieces of the advanced illness puzzle.” The major tenets of PFCC are promoting choice, purpose, and meaning in daily life and supporting the well-being of individuals and their families. However, the author reports that PFCC is not fully understood by practitioners and has not yet been fully integrated into the health care and long-term services and supports systems (LTSS).
In addition to placing great importance on the values and preferences of an individual and their family, PFCC also aims to include the person and the family at the center of the care team, along with health and social service professionals and direct care workers. This inclusion involves treating family caregivers as partners in care, and addressing families’ needs and preferences. Moreover, PFCC stresses the importance of evaluating a person’s experience of care.
The author discusses the importance of conceptually moving beyond just “person-centered care” to “person- and family-centered care,” which recognizes the importance of family in the lives of care recipients, as well as family members’ substantial roles in providing care for many older adults. In 2009, family caregivers were estimated to provide 40.3 billion hours of unpaid care at an estimated value of $450 billion, and their contribution to care led the author to conclude that “without family caregivers, the health care systems and LTSS would be unable to meet the needs of older adults.”
This article also describes family-centered care as amplifying person-centered care by recognizing and supporting the vital role of family caregivers. However, in this PFCC model, this recognition and support needs to go beyond just viewing family members and family caregivers as “resources” for an individual. Instead, they need to be recognized as individuals who may themselves need information, training, and support. The particular needs and circumstances of family members also need to be taken into account.
In practice, PFCC aims to offer respect and dignity for individuals and their families. One way that this is done is by treating the individuals as whole persons with a number of factors contributing to their well-being, rather than focusing too narrowly on just a medical condition being treated. Additionally, such care should promote communication, shared decision-making, and empowerment, and PFCC should emphasize coordination and collaboration across care settings and care providers—including family members. If this is accomplished, individuals and their families can have enhanced autonomy as well as an improved quality of life.
The article concludes with recommendations for promoting greater adoption of PFCC. First, public policy should support adherence to key elements of PFCC. Second, resources (including appropriate technology) need to be devoted to addressing the continuity and coordination of care across a care team that can include family members. Third, the older adult and family members need to be placed at the center of any interdisciplinary care team. Lastly, attention must be paid to providing the services and supports that matter most to older adults and their families.
As can be seen in these recommendations, there are multiple levels at which provisions for PFCC need to be encouraged and supported. In order to successfully implement PFCC, while caring for an individual’s physical and medical condition, resources must also be devoted to supporting and including family members and to ensuring that the experience of care reflects the patient’s values and preferences.
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