Family Caregiver Considerations for the Future of Hospital at Home Programs

The Hospital at Home (HaH) model shifts care into the home setting and delivers acute hospital-level care to eligible patients where they live instead of in a hospital. This means that family caregivers may end up providing increased assistance to the HaH patient with activities of daily living and handling household chores (e.g., cleaning, laundry). This assistance may already be part of the routine tasks that family caregivers take on, but it is likely to become more intensive during a patient’s acute care episode that would otherwise occur in a hospital.

HaH programs entered a new stage with the onset of the COVID-19 pandemic. Amid concerns about hospital capacity during the pandemic, the Centers for Medicare and Medicaid Services (CMS) introduced regulatory flexibilities that extended care outside the physical hospital setting. This included the Acute Hospital Care at Home (AHCaH) waiver, which allowed qualifying hospitals to waive certain nursing care conditions of participation and offer acute inpatient care in the home. As of August 15, 2022, 247 hospitals across 111 health systems and 36 states were participating in this waiver program. (CMS regularly updates those figures at this link.) Current pending legislation would extend the waiver program for two years from the end of the public health emergency. For this and other reasons, HaH programs are expected to continue to grow.

Family caregivers are critical to HaH success, supplying vital observations, communications, and support for the patient, yet many current HaH programs neither explicitly account for the needs of family caregivers nor secure their assent. There is an overall lack of information regarding the expectations of family caregivers and how to access available support services in HaH programs. Further, few studies have assessed the impact of HaH on family caregivers. More inclusive and supportive policies for caregivers will allow HaH programs to truly meet the needs of both family caregivers and patients.

Federal policy makers and HaH program operators can build on HaH’s recent growth and advancements with an eye toward improvements that specifically and intentionally meet family caregivers’ needs. While generally associated with positive health outcomes and patient satisfaction, for HaH programs to succeed and fully benefit all parties involved, policy makers and HaH operators should acknowledge the crucial role that family caregivers have played—and will continue to play—in this care model. 

This brief presents four detailed Family Caregiver Considerations that HaH models can incorporate into policy and program design to best support patients and family caregivers. Each is thoroughly explained in the full report (see PDF in the Full Report box on this page).

1) Family Caregiver Consideration 1: Ensure Choice, Access, and Equity

Description: Every HaH program should make clear that participation is voluntary for both patients and family caregivers and eliminate all barriers related to access and equity issues.

• Seek caregiver assent to guarantee voluntary participation
• Ensure that there is equity in the patient populations served, including providing support services where income or language may pose a barrier to participation
   

2) Family Caregiver Consideration 2: Be Clear and Understandable to the Patient and Family Caregiver

Description: HaH programs must provide clear information to both patients and family caregivers about the program, expectations, and services.

• Offer accurate and complete information about the HaH program
• Clearly delineate all expectations of family caregiver
• Specify any out-of-pocket costs
• Give clear explanations of all services and how to access them
   

3) Family Caregiver Consideration 3: Recognize and Support the Family Caregiver

Description: Family caregivers are critical to the success of HaH; as such, all programs must recognize and support these essential stakeholders by ensuring their needs are met and incorporating their voice and preferences.

• Do not expect caregivers to take on medical/nursing tasks
• Ensure services and supports are available and provided to meet needs of both patient and family caregiver during HaH stay
• Lead care coordination efforts so family caregiver is not responsible for coordinating care and services
• Encourage family caregiver to share observations
• Assist the patient and caregiver in setting up all necessary care and services to ensure a successful transition out of acute care
   

4) Family Caregiver Consideration 4: Allow for Appropriate Levels of Research and Learning

Description: Additional research to study and evaluate the impact of HaH programs, especially on family caregivers, will create opportunities for improvement and shared learning among programs.

• Make data available to researchers
• Conduct studies to evaluate impact of HaH programs on family caregivers and any issues related to access and equity
• Share learnings across programs to coordinate larger efforts