“Indispensable, important in the highest degree.”
This is one of the definitions given for the word “essential,” when used as an adjective, in the 1964 edition of Chambers’ Etymological English Dictionary. A more modern resource, the Dictionary.com app, has a similar one: “absolutely necessary, indispensable.”
The demarcation between “essential” and “non-essential” played out at scale across American society starting in the middle of March. For skilled nursing facilities and their residents, it came in the form of a March memo from the Centers for Medicare & Medicaid Services that banned most visits to nursing homes, citing the agency’s responsibility to ensure “the health and safety of nursing home residents by enforcing the standards required to help each resident attain or maintain their highest level of well-being.”
The March 13 memo to state survey agency directors specifically directs facilities across the U.S. to “restrict visitation of all visitors and non-essential health care personnel, except for certain compassionate care situations, such as an end-of-life situation.”
As a short-term solution, the lockdown made sense. Given how little information the health care world had about the way COVID-19 behaved — the role of pre-symptomatic or asymptomatic spread wouldn’t become clear until almost a month into the lockdown, for example — there were few ways for SNFs to keep out a virus that had a uniquely high fatality rate for the elderly and people with underlying health conditions.
But even though more information began to emerge about mitigating the transmission of COVID-19 over the summer months, through such tools as masks, distancing, and keeping things outdoors — summer surge notwithstanding — it took CMS almost seven months to send out new guidance that made it clear there were more situations other than end-of-life that might qualify as “compassionate care.”
A new report that surveyed nursing home residents about their time during the prolonged lockdown highlights the collateral damage caused to those residents the restrictions were meant to protect. The survey by the non-profit health care consulting firm Altarum, which drew responses from 365 residents in 36 states from July to August, found that their movements within their own homes have been severely restricted, even for something as simple as spending time outdoors or socializing with other residents.
People across the U.S. have struggled with the mental and social toll of stay-at-home orders that were more or less loosened by mid-summer, but for residents at a SNF, this experience has been prolonged and heightened in ways that are best captured in their own words.
The dominant theme is loneliness. Over and over again, the replies pointed to the lack of human interaction and the intense suffering that it brings. While some replies were philosophical about engagement through virtual programming, and others had praise for specific staff members for their care and attention, the pain of isolation runs through the entire appendix of replies.
I don’t feel the touch of my family and I need that. I feel like they don’t love me anymore. I don’t understand why I can’t see other residents because we have all been tested. I really worry about the staff bringing COVID-19 into the facility. My days seem so long.
I feel like I am in prison. The prospect of weeks or months more of isolation make me feel like giving up on life. This is not living at all. Workers keep bringing the virus into the building, so tell me why my family can’t visit me in my room?
I feel like giving up. Can’t they do something? Bingo in the hallway seated in the doorway of my room does little to help. Too many new staff who treat me like an object rather than a person with feelings — physical and emotional. That happened a bit before but it’s worse now. I feel like they don’t want me to die from Coronavirus but they don’t care if I die from not getting good care and from deep depression. No emotional support nor mental health support is available to me.
Residents described not being allowed to go outside on their own and being at the mercy of the availability of tablets to communicate with their family. They described wanting to be able to go outside the walls of the facility — whether to town, the local Walmart, or to church — and to socialize with others.
None of these activities are without risk, of course. But as states reopen, those of us fortunate enough to be able to live independently have the ability to weigh the risk of meeting friends, going out to eat, or even traveling — and then acting on that decision without restraint.
Residents of a skilled nursing facility have not been given that agency, by virtue of their age or mobility or health, and where they happened to be living when the pandemic struck.
This is not to say that operators haven’t tried to address this problem of socialization and visitation. It’s an incredibly challenging task. When CMS put out guidance on visitation in May, universal testing was the benchmark for visitation, even though providers across the U.S. were still struggling to secure tests for staff and residents.
Staffing shortfalls and persistent shortages of personal protective equipment (PPE) make arranging safe visitation even harder. And with community spread of COVID-19 the primary driver of SNF outbreaks, much of the conditions for visits will be effectively out of any one facility’s hands.
But as SNFs reconsider their model and structure during this trial by fire, they need to pay particular attention to what the old model cost the people they’re caring for. And as operators pick up the pieces post-COVID-19, they need to make sure that residents and their families are not regarded as potential litigants or logistical problems, but as stakeholders to be consulted, people who have a say in their own lives.
As a reporter covering skilled nursing, I know I’ve frequently overlooked this. It’s not that resident considerations don’t come up in my conversations, but usually “the residents” are referred to as a monolith, the recipients of whatever value-based initiative or new care model I’m doing the story on. Those who live in a nursing home and their families aren’t positioned as people who have their own investment and their own stake in the space.
Granted, family members and residents may not necessarily have a handle on the clinical or financial complexities of running a SNF, or the larger regulatory and payment forces that govern the industry.
One way to mitigate that is to get them involved, as Lori Porter, the CEO and co-founder of the National Association of Health Care Assistants (NAHCA), did when she worked as a manager and administrator. Porter started a family council and involved them in the hiring process, in addition to sharing the facility’s financials with them.
“My hiring committee of families, we review the applications; they know what I’m up against,” she told Skilled Nursing News in September. “That’s why all the families are now coming in to feed other people’s families at mealtime, because I made them part of the team. And those who didn’t want to sign up for one of my committees, they shut up and went away, because people will complain until you give them something to do. Then they either want to be part of the solution, or they go away.”
It’s an approach more SNFs need to think about. Residents in nursing facilities are not customers, and they are not objects to be moved around for optimal business flow, and they are not cost centers, but the way the skilled nursing world has evolved makes it too easy for them to be treated as means to an end: higher reimbursement, an empty bed for a Medicare patient, a problem to be cleared before clocking out.
Whatever reforms come out of COVID-19, nursing home residents and their families need be understood as people with dignity, who are indispensable — important in the highest degree — to a nursing home’s workings and its operations.
They need to be treated as essential.