The coronavirus disease 2019 (COVID-19) pandemic made existing problems in long-term care (LTC) worse and introduced new challenges. Policies designed to minimize mortality and morbidity harmed residents' physical and mental health. The pandemic also highlighted that residents, families, and staff are rarely represented in institutional LTC policy decisionmaking. Responses to the pandemic across the LTC industry failed to account for what was important to residents. In other words, policies were not resident-centered.
Given these problems — and that the last major legislative action directed at LTC occurred more than three decades ago — change in LTC is overdue.
The National Imperative to Improve Nursing Home Quality, a 2022 report by the National Academies of Sciences, Engineering and Medicine, can provide a foundation for change. The recommendations in that report address LTC staffing and financing, among other issues. Participatory policy decisionmaking — decisionmaking that meaningfully involves residents, staff, and others — can expand the impact of those recommendations.
The COVID-19 pandemic can be a catalyst for establishing inclusive policy decisionmaking as the new cultural norm in LTC.
RAND researchers developed a blueprint for transforming the decisionmaking culture in long-term care and to avoid a recurrence of the substantial harm that the pandemic caused in these settings. They held one-on-one interviews with LTC residents, direct care staff, consumer advocates, facility administrators, LTC industry organizations, and clinicians and researchers working in LTC, along with a panel meeting with a range of LTC stakeholders, to understand how infection-control policy decisions were made and to explore how such decisionmaking could be improved. of perspectives that would be included in a participatory approach to infection control in LTC facilities. These stakeholders provided keys to transforming LTC.
- The pandemic made known problems in LTC worse. Problems with quality of care, staff retention, resident autonomy, and resident health and well-being worsened dramatically during the pandemic.
- Cultural change is essential: Inclusive policy decisionmaking is not common in LTC. Small-scale models that emphasize resident and staff autonomy are promising and could be scaled up for wider adoption.
- Changes to policy decisionmaking in LTC 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. LTC facility leadership sets the tone for staff action and, ultimately,is responsible for ensuring resident well-being.
- Resident-centered, inclusive policy decisionmaking could balance community protection and individual well-being.
- 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.
- Change the culture of long-term care by raising awareness of the quality improvement potential of participatory decisionmaking.
- Focus more attention on leadership training. Facility leadership is 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 LTC. 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.
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