By Thomas Goldsmith
Lingering confusion, personal anger and legal questions still surround the subject of COVID-era visits by relatives and caregivers to North Carolina’s long-term care homes.
And much remains to be resolved — likely with pending legislation — following the havoc and heartbreak that COVID-19 brought to an ill-prepared system, said N.C. speakers brought together by NC AARP for an update.
Rebecca Chaplin, associate state director of AARP’s Mountain Region, called the issue “a hot topic with lots of confusion.”
Offering facts, opinions and recommendations on North Carolina’s official handling of the issues were state Sen. Jim Perry (R-Kinston), long-time state Department of Health and Human Services care ombudsman Lindsay Tice (Stanly-Mecklenburg), and Friends of Residents in Long-Term Care board chairman Bill Lamb. The virtual panel came at a time when the long months of a state-ordered visitation ban have left a trail of mixed messages, irritation and advocacy for change.
“For many of my constituents and just many people in the state, the pandemic and the lockdowns, and the safety protocols that were put in place, even when well-intended, at times just went too far,” said Perry.
“There have been times that we have forgotten that care is part of health care.”
The state Department of Health and Human Services has counted more than 53,000 cases and 5,480 COVID-19 deaths in North Carolina nursing homes since March 2020. Gov. Roy Cooper announced a near-universal ban on visits to nursing homes in that month, leaving bereft countless residents and caregivers barred from spending time with a dying relative before the end.
“I’ve interacted with people who have lost family members and in some cases their family members had passed away alone, and that should not happen,” Perry said. “We do know much more today than we did in the beginning, but these problems are still going on, so I think that we need to continue to raise awareness and push back on unnecessary restrictions.”
Slow return to normal
Regulation of long-term care in North Carolina is complicated, as it is in all states. Adult care homes, at the assisted-living level, generally operate under the state DHHS, with the federal Centers for Medicare and Medicaid Services providing supervision and funding for qualified residents.
For the more medically intensive nursing homes, known formally as skilled nursing facilities, the bulk of supervision falls to CMS. However, state DHHS staff inspect facilities and report lapses that can bring fines and even, rarely, the closing of a residential center.
Cooper lifted most restrictions on visits to nursing homes on May 14, but conflicting practices remain, said Lamb from Friends of Residents.
“I can tell you from the calls we get, the family members still have to fight for the privilege of visitation on a case by case basis,” Lamb said. “We have many facilities who are very open to visitation.”
Lamb recounted the experience this spring of a North Carolina couple: The husband was denied the right to visit his wife under compassionate care policy, often employed only as death approaches for a resident and for relatives performing vital services.
“There are many other circumstances where a resident is having a hard time adjusting, where a family member is providing care critical to that person’s well-being, where a resident is really having a problem, as a lot of these residents get depressed and stop eating or drinking,” Lamb said.
“His wife was in a special care unit. She had end-stage dementia. And this man went to the facility and fed his wife, every meal, breakfast, lunch and dinner. And then one day he was locked out, no understanding of what was going on, and that woman stopped eating,” he said. “A month later she died.”
Tice, who interacts with residents, families and facilities in Stanly and Mecklenburg counties, and Lamb agree that most facilities are approaching a pre-COVID status of allowing visits, though with practices calling for high levels of caution.
“One of the things that we’re hearing across the state is that there are some facilities that are very hesitant to really restart,” Tice said. “There could be a lot of opinions about that, but it’s the right of the resident to have a visitor if they choose to have one.”
Preventing a replay of 2020
The legislative effort to make sure caregivers can visit differs this year from the first stab in 2020 when the pre-vaccination impact of COVID was newer and even more dire. Instead of setting up a new set of state laws, Senate Bill 191 rests on the meaning of visitation as established by federal law and the Residents’ Bill of Rights.
“We studied federal disability law, and we continue to monitor guidance from CMS for these facilities,” Perry said. “Instead of having the code of federal regulations used against us in our efforts when we came to understand it better, we realized that we could point to that, because it absolutely forbids holding patients in seclusion for long periods of time. The federal regulations and guidelines already say that you can’t have blanket no-visitation policies.
“When we studied disability rights law, we learned that regardless of the status of the pandemic, that other than for short periods of time, it was 100 percent illegal not to allow someone to have a visitor.”
Federal regulators and Cooper lifted the general lockdown, however, advocates not only want the current laws to be clarified, but they also want to make sure that the same restrictions don’t remain in place should another such situation arise.
The proposed law would have teeth in the form of hefty, daily fines against skilled nursing homes that break federal standards.
“It says, ‘Hey, you’re either going to follow this in the state of North Carolina, or we are going to have a mechanism in place to fine you on a per instance per day basis’,” Perry said.
“That adds up pretty quickly. It doesn’t go as far as we would like, but it does cover many of the situations that we faced.”