Reconceptualizing family caregivers as part of the health care team

Abstract

Family and friends who serve as caregivers are becoming increasingly important in supporting adults to complete various tasks such as transportation, shopping, and health care responsibilities like medication management (1). It is estimated that the number of adults older than 65 in the United States will nearly double in the next four decades (2), and over 80% of family caregivers of older adults are responsible for coordinating care between and among providers (3). However, the inclusion of these caregivers in the health care delivery process lacks recognition, coordination and standardization (4). Despite efforts to include caregivers (e.g., through informal or formal proxy access to their care recipient’s patient portal), policies and procedures around caregiver inclusion are complex and inconsistently implemented (5). One policy, the Caregiver Advise, Record, Enable (CARE) Act, was developed by AARP, then introduced to state legislatures, and is intended to provide designated caregivers with discharge instructions and guidance. The CARE Act, now signed into law by 40 states, aims to provide health care providers with practices that integrate caregivers into the process of care delivery, but has failed to be broadly implemented within health care organizations (6). A national survey of health care executives, clinical leaders, and clinicians about caring for caregivers found that 79% of respondents are either not very familiar or not at all familiar with the CARE Act (6). Medicaid waivers are intended to provide caregivers with training and, in some cases, compensation; yet these efforts are uncoordinated across the U.S. (5). Tools have also been developed to offer caregivers shared access to electronic health records. Yet a significant issue remains: how are caregivers ultimately included in the team itself? Understanding caregiver inclusion in healthcare teams is essential to maximize the benefits they have to offer for improving patient outcomes. Most centrally, team-based patient care can be understood as an information sharing/ distribution of expertise problem, in which the optimal care solution might depend on important information that is not shared among members of the care team (7). For instance, a patient may receive information about wound care from their doctor during a visit, but the caregiver responsible for overseeing the wound care may not directly receive those instructions from the provider. This type of communication gap may then result in negative patient outcomes. More dramatically, health care teams failing to adequately include the caregiver’s unique perspective may make suboptimal treatment decisions. In this commentary, we discuss considerations surrounding caregiver inclusion in health care teams and outline the implications of caregiver engagement for Editorial Commentary