Policies to prevent the spread of COVID-19 in long-term care facilities have failed to balance community safety and resident well-being. Input from a range of stakeholders—including facility leadership, residents, consumer advocates, researchers, and clinicians—highlighted a need for cultural change in long-term care and opportunities to make policy decisionmaking more inclusive.

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Policy Decisionmaking in Long-Term Care

Lessons from Infection Control During the COVID-19 Pandemic

by Lori Frank, Thomas W. Concannon, Jordan M. Harrison, Sarah Zelazny

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Research Questions

  1. What specific changes are needed to increase the inclusion of residents, staff, and families in policy decisionmaking in long-term care settings? Which changes are best addressed within the facility, and which should involve facility owners, payers, or regulators?
  2. How could different governance structures for decisionmaking in long-term care be used to advance the inclusion of residents, staff, and families in policy decisionmaking?
  3. What changes are required for the relationship between long-term care facilities and policymakers to support residents' voices in governance?

The COVID-19 pandemic focused attention on long-term care facilities' need for infection-control policies that balanced community safety and individual well-being. Infection-control policies were often developed, implemented, and mandated without the input or involvement of those who are most affected: residents and their family members, administrators, and staff. This failure led to declines in residents' physical and mental health. The pandemic exposed an opportunity—and an imperative—to reimagine long-term care in a way that is centered on the needs and preferences of those who receive care, their family members, and those who provide care.

This report lays the groundwork for cultural change and a move toward inclusive policy decisionmaking in long-term care through a review of infection-control policy decisions and action items proposed in guided discussions with a diversity of stakeholders—long-term care residents, direct care staff, and consumer advocates to facility administrators, clinicians, researchers, and industry organizations. Transforming the culture of long-term care to elevate the needs of residents will require attention to facility leadership, along with steps to increase inclusiveness, transparency, and accountability in decisionmaking.

Key Findings

The COVID-19 pandemic made known problems in long-term care worse.

  • Inclusive policy decisionmaking is not common in long-term care, and cultural change is essential. Small-scale models that emphasize resident and staff autonomy are promising and could be scaled up for wider adoption.
  • Changes to policy decisionmaking in long-term care need to be sensitive to system-wide pressures. The realities of regulation, financial management, and staffing must be acknowledged in any efforts to promote cultural change.
  • Leadership is critical to realizing change. Long-term care facility leadership sets the tone for staff action and, ultimately, is responsible for ensuring resident well-being.
  • Resident-centered, inclusive policy decisionmaking balances community protection and individual well-being.
  • Establishing participatory governance, which is inclusive of the views of those who are most affected by infection-control policies—residents, their family members, and staff who provide care to residents—is a feasible way to improve policy decisionmaking and meet the needs of residents.

Recommendations

  • Change the culture of long-term care by raising awareness of the quality improvement possibilities of participatory decisionmaking.
  • Focus more attention on leadership training. Stakeholders agreed that facility leadership was critical to the quality of policy decisionmaking.
  • Fund examinations of communication between staff and administrators, and assess the impact of age, gender, race, and ethnicity on collaborative decisionmaking.
  • Examine the ethical dimensions of balancing individual preferences for infection risk against community-level protections in long-term care. Infection-control policies that prioritize minimizing infection risk over preserving individual agency regarding risk assume a balance that does not reflect the views of all residents and other stakeholders.

Table of Contents

  • Chapter One

    Introduction

  • Chapter Two

    Methods

  • Chapter Three

    Findings

  • Chapter Four

    Discussion

  • Chapter Five

    Recommendations

  • Appendix A

    Definitions and Glossary

  • Appendix B

    Structured Discussion Guides

  • Appendix C

    Stakeholder Panel Meeting Participants and Interviewees

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