Policy Decisionmaking in Long-Term Care: Lessons from Infection Control During the COVID-19 Pandemic

The long-term care (LTC) industry is in distress. The coronavirus disease 2019 (COVID-19) pandemic made existing problems in LTC worse and introduced new challenges. With more than three decades since the last major LTC legislative action, new initiatives are overdue.

The pandemic also highlighted that residents, families, and staff are rarely represented in institutional LTC decisionmaking. Policies designed to minimize mortality and morbidity had negative consequences for physical and mental health. Initial policy responses to the pandemic across the LTC industry failed to account for what was important to residents. In other words, they were not resident-centered.

LTC consumer advocates, policy researchers, care providers, and residents and their families have all championed dramatic reform. A 2022 National Academies report, The National Imperative to Improve Nursing Home Quality, has strengthened the foundation for change. In promoting engagement and inclusion across the broad range of LTC stakeholders, the report could have a deep and sustained impact, spurring a reimagining of LTC on par with a 2001 Institute of Medicine report that made patient-centeredness a primary goal of U.S. health care quality reform. To fully realize the promise for change in LTC, the needs and well-being of care recipients must be at the center of both institutional governance and clinical care.

The COVID-19 pandemic can be a catalyst for establishing inclusive policy decisionmaking as the new cultural norm in LTC—decisionmaking that meaningfully involves residents, staff, and others. With input from a range of stakeholders, we identified opportunities to improve how infection-control and other policies are developed, communicated, and implemented and avoid a recurrence of the substantial harm that the pandemic caused to those who lived and worked in LTC settings:

• Cultural change is essential. Inclusive policy decisionmaking is not common in LTC.
• Changes to LTC policy decisionmaking 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. A consistent theme emerged on the importance of LTC facility leadership in setting the tone for staff action and, ultimately, ensuring resident well-being.
• Resident-centered, inclusive policy decisionmaking balances community protection and individual well-being.

These findings provide concrete steps for enhancing current efforts to improve LTC by changing the culture of policy development. We recommend adopting principles of resident-centeredness and participatory policy decisionmaking that includes input from those most affected by policy decisions.