Diane Rutherford had spent only six months in her new home at a memory care center in Chandler, Ariz., when the COVID-19 pandemic forced the facility to halt in-person visits in March.
Rutherford was diagnosed with early onset Alzheimer’s disease seven years ago at age 58, and her husband, Steve Corman, had been visiting her nearly every day since the move. “Just one day, they told me I couldn’t visit her anymore, and that was it for about six months,” he told CQ Roll Call.
Corman weathered the brutal Arizona heat to visit Rutherford through a window instead, but it wasn’t the same. Nurses had to work to keep her engaged, and she struggled to understand what was happening.
“It was pretty clear that when they would get her to look at me she would recognize me, but it’s not 100 percent clear how long that would last or if that would last for the whole visit,” he said. “It was just very hard, you know.”
The couple's situation is emblematic of the dilemma facing long-term care facilities, their patients and regulators across the country. Tasked with protecting the nation’s most vulnerable population from a highly transmissible virus, officials are struggling to strike a balance between infection control and quality of life. An estimated 40 percent of U.S. COVID-19 deaths have been tied to nursing facilities.
States are addressing the issue through a variety of policies, leading to a patchwork of approaches in different types of facilities or in different areas.
Health care providers say prolonged separation accelerates cognitive and emotional decline in long-term care patients.
Ashwin Kotwal, a geriatrician and assistant professor at the University of California, San Francisco, said the virus restrictions take both a physical and mental toll. Patients lose muscle mass faster when confined to their rooms or beds, making them more prone to falls. He has also seen depression spike in his patients, brought on by loneliness.
“You can prescribe the antidepressants and medications, but that's not targeting the underlying cause,” he told CQ Roll Call. “And for many of my patients — especially those diagnosed with serious illnesses, like cancer, or end-stage [chronic obstructive pulmonary disease], or heart failure — we’re thinking about people who might be in the last years or decades of their life. And the idea of having to go through these prolonged social restrictions with no clear end in sight, you can really see why people become hopeless.”
State and federal conflicts
Long-term care facilities are restricting visitors once again as the United States continues to log record-breaking new case numbers. Guidance from the Centers for Medicare and Medicaid Services, which oversees nursing homes, calls for facilities to halt most indoor visitation if there have been any COVID-19 cases at the institution in the past 14 days, or if the county positivity rate is above 10 percent. The exception is for instances of “compassionate care,” which include but are not limited to end-of-life situations, emotional crises or instances of a patient’s rapid decline.
Assisted-living facilities that house less medically acute patients, like the memory care facility where Rutherford lives, typically don’t receive Medicare funds and therefore are mostly subject to state oversight instead of federal regulation.
But the guidelines vary from state to state, and in cases where states apply the same guidelines to federally regulated nursing homes, the state policies sometimes appear to conflict with the federal guidance.
In October, Arizona’s long-term care task force adopted an idea from Florida that designated a family member or loved one as an “essential” visitor, in an attempt to establish a middle ground between infection control and quality of life.
Essential visitors in Arizona are required to be tested weekly and receive protective equipment like masks so they can resume in-person visits and assist with daily activities. Several states have similar policies, but the definitions vary and some seem at odds with the CMS definition of compassionate care.
“We understand that some states or facilities have designated categories of visitors, such as ‘essential caregivers,’ based on their visit history or resident designation,” the department said in its guidance. “CMS does not distinguish between these types of visitors and other visitors.”
A CMS spokesperson declined to comment on six different state policies that don’t appear to mesh with the agency’s guidance.
In Arizona, the state’s long-term care guidance allowing essential visitors also applies to federally regulated nursing homes. But Arizona Department of Health Services spokesperson Holly Poynter said in an email that the state recommends that any facility under CMS oversight follow the more stringent federal guidance.
Other states are simply incorporating the idea of essential visitors into their definition of compassionate care. Indiana specifically cites CMS guidance on compassionate care, for example, but adds in essential caregivers.
“If a facility believes that despite county prevalence rates that essential family caregivers should be allowed in the facility, they should reach out to the Indiana Department of Health to discuss,” spokesperson Megan Wade-Taxter said in an email.
Minnesota, along with New Hampshire and New Jersey, incorporated essential caregivers into their definitions of compassionate care.
“Upon our examination of CMS policies, we concluded our essential caregiver approach is consistent with them, and we don’t expect any problems,” Minnesota Department of Health spokesperson Scott Smith said.
“We see essential caregiving as compassionate care and yes allowed in any phase,” New Jersey Department of Health spokesperson Donna Leusner said in an email.
Additionally, a number of states are basing visitation policies solely on the length of time a facility has gone without a positive case, excluding county positivity levels outlined by CMS. In Delaware, visitation is restricted outside of compassionate care reasons if a facility has had a new case in the past 14 days. But the state guidance also says essential caregivers may be allowed into COVID-19-negative areas if residents are separated by their disease status.
Delaware Department of Health and Social Services spokesperson Jen Brestel did not explain the discrepancies but said the department is revising the guidance.
When Corman was finally able to see Rutherford up close, the difference in her engagement was significant. She sits next to him and holds his hand, he said, so her ability to recognize him is more apparent.
Corman has noticed some progression in her disease, but it’s hard to tell if it’s natural or attributable to their extended separation. He was permitted to attend her doctor’s appointments from a distance before the lockdown lifted, but it wasn’t until he was able to see her up close that he noticed she appeared dehydrated.
“I hold her medical power of attorney, so it gave me information I needed to help manage her care,” he said. “That really wasn't available when I was looking at her through a window.”
Rutherford receives great care at the facility, he adds, but no one will pay as close attention to her as he will.
Shortly after noticing her dehydration, the staff realized Rutherford’s blood pressure was low. So now, Corman makes a habit of bringing drinks with him when he visits her every other day, along with a variety of sweets flavored with coconut — her favorite.
Rutherford’s facility hasn’t had an outbreak since July, and the restrictions are tight enough that Corman feels that she is as safe as can be expected. As a 62-year-old with high blood pressure, Corman stays relatively isolated and figures he’s less at risk of bringing in the virus than the staff.
Corman said he understands the reason behind the lockdowns, but fears they can overlook the patient’s quality-of-life needs.
“When you have a terminal disease like dementia,” he said, “there comes a point when you have to ask yourself, what is the point of keeping somebody alive when they’re miserable because they can’t see their loved ones?”