By Molly Peterson, KQED, April 21 2020
More than 21 percent of nursing homes in California now report cases of COVID-19, according to new lists state officials made public Monday, following a promise by the governor. The California Department of Social Services released some limited information about cases and deaths at adult and residential care facilities. Together, the lists — among the most comprehensive in the nation — still offer only a partial picture of institutional outbreaks of coronavirus.
Among more than 7,400 assisted living facilities, the newest list includes information only for facilities with more than six residents.
Among 1,244 skilled nursing facilities statewide, a list released over the weekend shows cases, but not deaths. Characterized as “a point-in-time snapshot,” it includes only nursing homes who reported cases within one 24-hour period. No facilities from Fresno or Kern counties appear on it, even though each of their health departments report that cases are surging countywide.
Coronavirus has sickened thousands of workers and residents at care facilities around the state, but exactly which facilities remains murky because of a diffuse web of local policies, privacy concerns, and testing constraints.
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Even before the pandemic, state and federal law required long-term care homes to inform residents, their family members, county health departments, and regulators about viral outbreaks. But nothing requires public officials or the care homes themselves to publish that information for the public to see.’What is the big secret? I don’t get it.’Chris Murphy, assisted living advocate
“Certainly these hotspots of concentration are points of concern but also points of emphasis of how we’re responding,” Governor Gavin Newsom said at a briefing April 10, after enumerating the number of reported cases at long-term care homes.
It was another week before the state’s first partial list appeared.
“My first reaction is, I’m glad they finally did it,” says Mike Dark, an attorney with California Advocates for Nursing Home Reform. “I don’t understand why they delayed for so long.”
Dark and others say even more transparency is essential, both to protect residents in care now, and because consumers need to make safe and informed choices for themselves or for family members, such as a relative forced to come out of the hospital after a necessary procedure.
“What is the big secret?” says Chris Murphy, an advocate for assisted living reform. “I don’t get it.”
A Phone Call Away
California is one of two states to attempt any comprehensive list of outbreaks; in Florida, a similar list includes all congregate living outbreaks, past and present. As of Sunday, the state is requesting daily reporting from skilled nursing facilities “regarding staffing levels, the number of COVID-19 patients, confirmed positive and suspect patients, equipment availability, and other needs.”
State officials say that even absent public disclosure, the California Department of Public Health has been responding to facility needs with on-site “strike teams” that work to insure infection control, to isolate residents, and assess exposure to the virus.
CDPH says it employs 600 registered nurses to visit and advise facilities in-person when there is no report of coronavirus nurses. As much as possible, and specifically where the virus has spread, those nurses communicate with care homes via web, telephone, or video conference, about pandemic advice and routine business.
Advocates say calls are just not as effective to find out what’s going on. They point to outbreaks in other states like Washington and New York.
“One reason why these numbers that the state has aggregated are so unreliable is that there is literally no one else to confirm just how high the toll of the sick and the dying really is,” says attorney Dark.
In a written statement, the California Association of Healthcare Facilities, a trade group whose members are nursing homes, says the fact that nearly 80% of such homes show no cases of COVID-19 is “a credit to nursing home workers who isolated patients from visitors early on, ramped up infection prevention protocols and refused to take COVID-19 positive patients from the hospital.”
Any COVID-19 positive case, the group says, is “troubling but not unexpected.”
Patchwork of Local Policies
Nothing requires counties to disclose coronavirus outbreaks to the wider community either. Many counties only confirm an outbreak in a facility — they won’t announce it. Some, like Fresno and Kern, offer no public information about outbreaks at all.
Like the state, counties are advising facilities on outbreaks; like the state, they’re mostly staying in touch by phone. To get the best information about matters like staffing shortages and infection controls, health officers say it’s important to keep lines of communication open.
County health departments also point out that they don’t license assisted living facilities or nursing homes. That’s the work of the state Department of Social Services and the California Department of Public Health, respectively.
Among Bay Area counties, Santa Clara is now the first to release case, hospitalization and death information for nursing homes, independent and assisted living, and “board and care” homes. As of Sunday, Santa Clara counts 28 deaths and 348 cases of coronavirus in these facilties.
In Alameda County, a nurse-led “task force” has called care homes to check up on them. Where outbreaks begin, county health officer Dr. Erica Pan says task force members work through a checklist of interventions, guiding how administrators respond.
“One of our first items on our checklist to review with the facility is that they should be communicating with their staff and their residents and the families of those residents,” Pan says. “So I feel like our time is well spent doing that, to try to encourage this facility to do that, rather than us going to the media and then telling the whole community.”
Alameda County only confirms COVID-19 outbreaks after facilities disclose them. “There isn’t a lot the public can do about an individual outbreak in a closed facility,” Pan says. The county has updated case, hospitalization and death counts for facility outbreaks, but doesn’t guarantee how often that happens.
When Yolo County announced an outbreak last week, spokeswoman Jenny Tan says the county left out the name of the assisted living facility in Woodland where it’s happening.
“There’s a lot of fear and anxiety,” Tan said, referencing both the county and the facility itself. “And so we’re trying to protect their identity a little bit.”
In Los Angeles, the county has for weeks published every instance of a reported outbreak in a congregate living setting.
“It’s fantastic that [county] public health has chosen to be a leader in that regard,” says Molly Davies, the long-term care ombudsman for L.A. county. “We could take that one step further.”
Davies says local officials should also disclose case numbers and deaths, because, she argues, “that’s going to weigh very heavily into my decision about am I going to bring my loved one home.”
Companies have no expectation of privacy in the case of reported outbreaks, under federal or state law. But some counties argue even releasing facility names can compromise the privacy of patients, protected in part under HIPAA.
In Yolo County, family members and staffers told several media outlets that the facility is Stollwood Convalescent Hospital at St. John’s Retirement Village; the state’s list now confirms at least 55 cases of COVID-19 there among workers and residents. No language on the facility’s website confirms an outbreak, though it now has posted the county’s press release about an unnamed facility working with the county to slow the spread of the virus.
What counties large and small, urban and rural, can offer in terms of staffing and protective gear varies widely. Some discourage facilities from permitting staff to return to work quickly after testing positive. Some do not. Some have connected facilities with tests; some lack that capacity.
“What we have is a very chaotic patchwork across the state and little direction from the Department of Public Health,” says attorney Dark.
‘Who’s Going to Tell Us?’
Public officials acknowledge that outbreaks, and disclosures about them, may influence decisions about care – even taking a loved one out of a care facility.
“At this point in time, if you’re able to care for them at home,” Los Angeles county medical officer Dr. Barbara Ferrer said, “this would be perfectly appropriate… .”
In Hayward, during the last four days of his life at Gateway Care and Rehabilitation Center, Costell Akrie never heard from his family once. Not for lack of trying.
“When we would call, we were transferred to the nurses station and the phone would just ring and ring and ring,” his widow, Dianne, says. “I never got to say goodbye to my husband of 65 years or to tell him I loved him…nor did anyone in our family.”
Thirteen Gateway residents have now died; 102 people, including residents and staffers, have tested positive for COVID-19.
Family members of patients at other long-term care homes have told KQED that they’re frustrated by the absence of testing where they’ve been notified about the presence of COVID-19 in a facility, and about opaque testing policies where the virus is still a looming threat.
Given national, statewide and local testing constraints, confirmed numbers may not grow, even as an outbreak does. No published state-issued guidance recommends whether to test all workers and residents at long-term care homes after an outbreak is reported. Where tests are possible, there’s a lag until they’re complete. As a result, even the most up-to-date totals of positive tests at care homes undercount the problem, even as those numbers grow larger.
Eighty-two-year-old Pat Sack, a resident of Oakmont Gardens, an assisted living facility in Santa Rosa, says she’s alert to reports of outbreaks around the Bay Area.
She credits her caregivers with taking “A-1” precautions; coronavirus has not reached her home yet, not as far as she knows.
“We can’t help but wonder if there’s anything going on here in Sonoma County because we wouldn’t know,” Sack says. But if something happens nearby, “Who’s going to tell us? That part’s kind of scary.”