Last week, the United Hospital Fund, a health services research and philanthropic organization whose primary mission is to shape positive change in health care for the people of New York, announced an agenda of ten action steps to improve transitions in care for family caregivers and carees. A transition could be from a hospital to a rehab center or from a rehab center to home.

Family caregivers of seriously and chronically ill persons are poorly prepared for the daunting responsibilities and complex tasks they are expected to assume, the organization says. The action agenda asserts: “This situation must change, and now is the time to do it.”

“Transitions in Care 2.0: An Action Agenda” outlines ten recommendations designed to lay the foundation for health care professionals and administrators to work effectively with family caregivers, make family caregivers part of the care team, and align financing and accreditation policies. The agenda calls for focused and sustained action by health care providers, as well as additional change from payers, regulators, accreditation organizations, educators and training organizations, and patients and family caregivers themselves.

The ten steps, in brief, state that:

1. As a component of quality improvement activities, providers should map current transition processes, including staff attitudes and behaviors toward family caregivers.


2. The Office of Civil Rights of the Department of Health and Human Services should take the lead in retraining health care organizations and professionals about HIPAA, to prevent unwarranted withholding of vital information from family caregivers.


3. Health care providers should develop systematic protocols to identify family caregivers and include this information in the patient record.


4. Health care providers should guide family caregivers in assessing the family caregivers’ capabilities, limits, and needs.


5. Providers, professionals, and educators should develop effective training methods for family caregivers that take into account adult learning styles and differences in health literacy.


6. With support from leaders such as the Agency for Healthcare Research and Quality, organizations should adapt surveys and other tools to measure the family caregiver’s experience, apart from the patient experience, especially in the transition process.


7. Hospitals and post-acute care providers should develop effective coordination and communication with community physicians and other needed services about patients’ care plans and the involvement of family caregivers.


8. Payers should develop payment incentives for health care providers to support family caregivers’ involvement.


9. While standards promulgated by the Centers for Medicare and Medicaid Services and The Joint Commission already acknowledge the need to involve family caregivers, accountability for implementing these standards should be monitored and measured.


10. The Centers for Medicare and Medicaid Services and its Center for Medicare and Medicaid Innovation, as well as others promoting health reforms, should incorporate a family caregiver impact assessment as part of the review process.

What do you think of the 10 recommendations? What would you change or add? Please share your thoughts in our comments section, below.