United Hospital Fund Transitions in Care Action Agenda Calls on Health Care Providers, Payers, and Others to Train and Support Family Caregivers

Simultaneously Released Report Summarizes Three Years of Efforts by 45 Health Care Provider Teams to Improve Transitions by Systematic Involvement of Family Caregivers

Release Date: 05.15.2013
Contact: rdeluna@uhfnyc.org
Contact Phone: 212 494 0733

The United Hospital Fund has announced an agenda of ten action steps to improve transitions in care and contribute significantly to the transformation of the nation’s health care system. Currently, family caregivers of seriously and chronically ill persons are poorly prepared for the daunting responsibilities and complex tasks they are expected to assume. 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.

“Our Action Agenda is ambitious but achievable,” said David Gould, senior vice president for program at United Hospital Fund and co-author of the document. “All the building blocks are in place. What is needed now is determination to act, willingness to tackle the challenges, and creativity in making changes that improve the care and lives of patients and their families.” Carol Levine, director of the Families and Health Care Project at United Hospital Fund, is the other author.

The “Action Agenda” was presented yesterday at a United Hospital Fund conference, “Transitions in Care 2.0: Family Caregivers and Systems Change.”   The Gordon and Betty Moore Foundation supported an earlier working group meeting of national leaders that created the framework for this agenda.

Also issued at the conference was the report Engaging Family Caregivers as Partners in Transitions, which highlights a three-year initiative—Transitions in Care–Quality Improvement Collaborative, or TC-QuIC—involving 45 health care provider teams engaging and supporting family caregivers as a core strategy for improving patient transitions from one care setting to another. More than 200 team members from the participating providers—hospitals, home care agencies, nursing home rehab programs, and hospices—worked together to develop and test changes that went beyond a sole focus on the patient to look at family caregiver strengths, needs, and limitations in the transition process. The report details what participants did, what they learned in the process, and the impact of their efforts.

The report focuses on some of the lessons learned during the process, some of which are reflected in the action agenda.  Other lessons include:

  • Both staff and family caregiver experiences must be obtained and compared to identify system gaps and specific problems.
  • Staff assumptions about who the family caregiver is and what that person does at home are often wrong.  Identifying the right person is fundamental for training and follow-up. 
  • Many professionals need practice in helping family caregivers assess their own needs because they are used to professional judgments about capabilities and needs.
  • Among the many areas in which family caregivers need training and education, medication management is a priority. 
  • While reducing hospital readmissions was not expressly a goal of TC-QuIC, several participating teams measured that outcome and reported improvements.
  • Partnerships between sending and receiving organizations during patient transitions need to be strengthened.

“The TC-QuIC teams gained a  greater depth of knowledge about how transitions actually happen in their organization, making it possible to identify gaps and miscommunication that could lead to adverse events and poor outcomes,” said Carol Levine, the report’s lead author and co-chair of TC-QuIC. “Equally important, these providers learned first-hand about what family caregivers want and need to know.  They became part of the care team instead of invisible bystanders.  Many participants told us this was a major culture shift.” The report’s other authors are Deborah E. Halper, vice president for education and program initiatives, Jennifer L. Rutberg, senior program manager for the Families and Health Care Project, and David Gould.

“With nearly 20 years of experience working on the role of family caregivers in health care, we at the United Hospital Fund have learned a lot, and TC-QuIC has been a major contributor to that knowledge,” said Jim Tallon, president of the United Hospital Fund. “But we have not been alone in our efforts. With others around the country who have also been working on patient transitions, we have shared knowledge and arrived at many of the same conclusions. Those conclusions come together in our ‘Action Agenda,’ and the time for the adoption of its recommended steps has come.”

According to the October 2012 report Home Alone, which was based on a national survey conducted jointly by the United Hospital Fund and the AARP Public Policy Institute, nearly half of the estimated 42 million unpaid family caregivers in the United States perform complex medical and nursing tasks, such as medication management—including administering IVs and injections—wound care, and operating specialized medical equipment and monitors for a family member with multiple chronic physical and cognitive conditions.   

The “Action Agenda” is available from the Fund’s website at www.uhfnyc.org/publications/880904. Engaging Family Caregivers as Partners in Transitions (both the full report and a report summary) is available at www.uhfnyc.org/publications/880905.

About the United Hospital Fund: The United Hospital Fund is a health services research and philanthropic organization whose primary mission is to shape positive change in health care for the people of New York.

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