Nearly 40 percent of the state’s COVID-19 deaths were residents of nursing homes or other long-term care facilities, but a lack of transparency and changing reporting standards from facilities and the state department of health has left residents’ loved ones in the dark.
The state took early steps to limit the spread of the coronavirus in nursing homes. Gov. John Bel Edwards suspended visitation at all long-term care facilities three days after the state identified its first case on March 9, but within hours another case was identified in the Lambeth House retirement community in New Orleans.
In a week, 11 more Lambeth House residents tested positive for COVID-19 and one died from the disease. By March 25, the LDH had identified coronavirus clusters in six nursing homes. State officials said that they could not keep up with the increased volume of information they were receiving. On April 1, they stopped reporting facility names.
Shortly after announcing the policy change, Assistant State Health Officer Alex Billioux said that as cases mounted, the LDH was increasingly reliant on self-reported data.
“In consultation with the CDC, they felt that while it was laudable that we were sharing a lot of information, they were concerned about what that would portend — what that would mean for nursing homes sharing as this continues,” Billioux said.
A CDC spokesman later told The Advocate that the agency never recommended that the state stop releasing the names.
Under the system, which lets nursing homes and other long-term care facilities stay anonymous while reporting COVID-19 outbreaks, two-thirds of the state’s facilities reported cases. As of this writing, more than 900 residents of nursing homes and other long-term care facilities have died from the disease.
But the state didn’t release any information on where these outbreaks were happening. And that left many family members with loved ones in these facilities feeling anxious.
Among them is Sophie, whose mother resides in a New Orleans area nursing home. Sophie asked that we not use her last name or identify her mother’s nursing home out of concern for her mother’s privacy.
She was first notified of the outbreak there in late April.
“I got a phone call from a volunteer at the facility who was clearly just reading off a sheet,” Sophie said. “This person didn’t have any information about my mother specifically, nor did she seem to know her at all.”
Three days later she got a lighthearted email about drive-by visits. Slipped in at the bottom was a clarification — the first resident of her mother’s facility tested positive on March 25.
“A month, basically a full month before they told me that there was anything happening… It’s hard not to be upset about it,” Sophie said.
Sophie is grateful for the caretakers that have kept her mom healthy so far, and she worries that they’re not getting the support they need.
Elsewhere in the state, loved ones learned about deadly outbreaks through news reports and Facebook posts.
A state lawmaker from Pointe Coupee Parish said the owners of a nursing home across the street from his house denied the presence of COVID-19 in their facility, even as more and more people were dying.
David Grabowski, who studies nursing homes and health care policy at Harvard Medical School, said this problem isn’t unique to Louisiana.
“We have had a tremendous lack of transparency across facilities, across communities, across states. We’re basically flying blind,” Grabowski said.
Nationally, it’s estimated that nursing home residents account for one out of every three COVID-19 deaths. Grabowski said that is probably an undercount. In the states with the most rigorous data collection, the share of COVID-19 deaths in nursing homes is well over 50 percent, and very few facilities have kept the virus out.
“This is unacceptable,” Grabowski said. “CMS and the CDC should have been ahead of this from the beginning.”
Earlier this month CMS — the Centers for Medicare and Medicaid Services, a federal agency that oversees nursing homes — issued new reporting requirements. Starting Monday, long-term care facilities will report the number of cases and deaths among residents and staff every week. Louisiana officials have said they’ll use that data to start naming names again.
Edwards and state health officials said earlier this week that the Louisiana Department of Health is pushing for comprehensive testing in all congregate settings, including nursing homes, long-term care facilities and prisons.
Edwards has not released a timeline for the initiative. But said the state will have tested every resident and employee at its five veterans’ homes by the end of the week, and that health department’s strike teams have conducted comprehensive testing and infection control in a handful of facilities around the state.