The Covid-19 pandemic shined a light on how hard it is for long-term care facilities such as nursing homes and assisted living facilities to balance residents’ health risks with their desire for independence and autonomy. A few have found the secret sauce. Most have not.
A new study by the RAND Corporation, a California research firm, shows how facilities can reimagine the way they make these decisions and, perhaps, avoid the mistakes of the pandemic. The key takeaway: Operators of long-term care facilities need to make residents, their families, and front-line staff partners when they make choices that affect residents’ quality of life. This will require a fundamental change in management culture and won’t be easy. But it is critically important.
Balancing autonomy and safety
While RAND focused on infection control, the challenges of balancing resident autonomy with their safety and that of others has quietly simmered for years. Should a facility allow a patient who is a fall risk to walk around freely? Should residents be permitted to smoke cigarettes? What should facilities do when residents engage in a sexual relationship, especially if one or both is living with some cognitive limitations.
As we have learned over the past three years, these decisions can be especially fraught when it comes to individual freedom versus the safety of other residents and staff. What responsibility does a facility have to balance one resident’s right to, say, reject a vaccination or mask-wearing with other residents’ right to be safe from a potentially deadly virus such as Covid-19 or even flu?
This became highly controversial during the worst of the pandemic, when facilities imposed severe lockdowns. Visitors were banned. Community activities, including meals, were prohibited. Residents were, in effect, locked in their rooms for months on end.
These decisions were made in part because government required them. And because facilities were taking aggressive steps to prevent the spread of the deadly virus. At a time when more than 160,000 residents and staff died of Covid-19, the decision was not surprising.
Yet, we’ve known at least since late 2020 that those lock downs had their own serious downsides: The isolation and loneliness they created resulted in cognitive and physical decline and even premature death.
Beyond the government mandates, how were those decisions to lock down facilities made, and in retrospect what can we learn from them? And most important, did the way facility operators made decisions drive them to choices that may not have been best for their residents and their families?
In the Rand paper, authors Lori Frank, Thomas Concannon, Jordan Harrison, and Sarah Zelazny made several key recommendations. Among them, management should:
- Proactively engage residents and their families in decision-making. This could include creating more robust resident councils than exist today.
- Acknowledge the importance balancing safety and quality of life.
- Consider ways for residents to organize themselves by their tolerance for risk.
- Improve communication with residents and families, especially in times of crisis.
- Encourage open discussion between management and front-line workers. Empower workers to express their ideas and concerns.
- Increase financial transparency of facilities, including information about ownership.
All of these changes will require a fundamental change in the hierarchical management of many nursing homes and other long-term care facilities. In the traditional model, both aides and residents are expected to do what they are told without complaint, and families are little more than an annoyance.
In contrast, Frank and colleagues propose what they call “participatory governance” that can “incorporate multiple and sometimes conflicting perspectives [and] balance individual preferences and social group well-being.” In the context of Covid-19 and other infectious diseases, it means “weighing individual preferences for infection risk against protection of the facility community.”
In this model, management, staff, residents, and their families share responsibility for developing and implementing policies. At the same time, government needs to change the way facilities are regulated so that they are rewarded for adopting these reforms.
Changing the culture
The management reforms the authors describe build on a culture change movement that has simmered in the long-term care world for decades. More than two decades ago, it was a theme of a ground-braking Institute of Medicine report. It was key to the development of the Green House and Eden Alternative models of nursing homes and assisted living facilities and been the focus of a group of facilities called the Pioneer Network.
More recently, the idea of resident-centeredness was integrated in a major report on nursing home reform by the National Academies of Science, Engineering and Medicine. And it was a focus of a report by the Convergence Center on Policy Resolution. Full disclosure, I played a small role in the preparation of the RAND study and was a steering committee member of the Convergence project.
The idea never has taken hold in the long-term care industry. But nursing homes are at an inflection point. What they have been doing has not been working, either for their operators or their residents and their families. If they want to have a place as a credible source of quality care, they are going to have to change. The RAND report’s recommendations would not be a bad place to start.