‘A harrowing black hole of information’: Some nursing homes leave families in the dark about coronavirus

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By Sarah Ravani, San Francisco Chronicle, August 6 2020

Carlton Senior Living resident Jim Sander, 93, tested negative for the coronavirus, but has memory loss, and his son Dave Sander (right) couldn’t get information on the result of the test until The Chronicle contacted the care facility. Photo: Yalonda M. James / The Chronicle

Marla Harvey looked closely at her computer screen. Her grandmother, Annie Ballard, looked semi-conscious in her bed at San Miguel Villa, a nursing home in Concord.

“Is she sick? Does she have COVID?” Harvey frantically asked the aide who was facilitating the Zoom call between her and her grandmother in late May.

She was told no, her 89-year-old grandmother was just tired.

After the call, Harvey’s mother spent four hours on the phone trying to get more information on her mother’s health, but never reached anyone that day.

Harvey’s mother is the designated decision maker for Ballard, meaning state guidelines entitle her to get information on Ballard’s health.

Two days after the Zoom call, Harvey learned from the facility that her grandmother had tested positive for the virus, but didn’t show any symptoms. Five days after that, she learned her grandmother had died in a local hospital where she’d been transported.

Harvey didn’t know how widespread the outbreak was at San Miguel Villa until The Chronicle published a story in June detailing that 65 residents were infected, 17 of whom died.

Nearly five months into the pandemic, many nursing homes continue to leave families in the dark about their relatives’ test results or the prevalence of the virus in the facility. The state requires nursing homes and assisted living facilities to notify family members immediately after a positive test anywhere in the facility. But families and nursing home experts say that doesn’t always happen.

“I’m mad, helpless and angry,” Harvey said. “We didn’t feel like we were getting information from the nursing home. Something needs to change. Months into this and we know that nursing homes have had outbreaks, they should’ve been taking better precautions.”

Health care experts and advocates say that reliable information is necessary in understanding how widespread the potentially deadly virus is in these assisted living places. Without it, people are unable to make critical decisions for their families who live in them, including whether or not to remove them.

“It is so awful and unnecessarily sad that people are having to worry about people they love in care facilities and not getting any real information from facilities or from the state,” said Jessica Lehman, executive director at advocacy group Senior and Disability Action in San Francisco. “Especially looking at the appallingly high rate of deaths in care facilities from COVID, that information has to be provided.”

Facilities say it’s not always that easy. Forest Allen, the administrator at San Miguel Villa, said staff follow state and county rules, notifying family members if a resident tests positive or negative. But Allen said families are sometimes confused about how to get accurate information.

“We are supposed to notify the responsible party for all of our residents,” Allen said.

“It’s difficult because if it’s not the responsible party and they’re just a family member, I can’t tell them specific medical information because of HIPAA guidelines,” he said, referring to a federal health privacy law.

DeAnn Walters, the director of clinical affairs and quality improvement at the California Association of Health Facilities, agreed. She said families often aren’t aware that facilities can’t give out information to anyone but the designated representative.

Furthermore, with the pandemic, staffing shortages at nursing homes, due to sick workers or turnover, make it even harder, Walters said. Nursing homes will have to shift workers to focus on patient care — their first priority — “to make sure residents’ care needs are met,” she added.

Nursing homes and assisted living facilities should provide weekly updates regarding COVID conditions, said Michael Dark, a staff attorney at California Advocates for Nursing Home Reform. They should also designate a staff member as a family liaison.

Deaths at nursing homes and assisted care facilities account for nearly 45% of all coronavirus fatalities in California. In Contra Costa County, where Harvey’s grandmother lived, deaths at long-term care facilities make up more than 65% of all the county’s deaths — or 86 out of 131 total deaths — despite accounting for only 7.7% of all positive cases. In San Mateo County, the deaths account for 67% of all the county’s deaths — or 80 out of 120 total deaths, despite cases at long-term facilities making up only 9.6% of all positive cases.

In May, the Centers for Medicare and Medicaid Services issued a rule that requires all skilled nursing facilities to report COVID-19 data to the CDC and to notify residents, residents’ representatives and their families when there are COVID-19-positive residents or health care workers in the facility. The state Department of Social Services, which oversees assisted living facilities, issued a similar guidance a month earlier.

Nursing homes must also alert families and family representatives when three or more residents or staff have respiratory symptoms — for example, shortness of breath — within 72 hours of each other.

That information must be released by 5 p.m. the next calendar day, according to the state guidelines.

Failure to report to the state or alert families could result in federal or state action, which includes fines.

Still, nursing home experts say the lack of information about whether a family member has tested positive isn’t a surprise. The industry is mostly for-profit, and having COVID cases could affect future revenues, Dark said.

“Some of that may be negligence and incompetence and some of that may be on purpose because they don’t want the information to get out,” Dark said. “Either way, it leaves families in a harrowing black hole of information where they’re not able to make good decisions for their loved ones.”

Tina Gullotta looks through photos of her 87-year-old father, Harry Misthos, who died from COVID-19 earlier this year. Photo: Scott Strazzante / The Chronicle

When Tina Gullotta called her father one April morning, he didn’t greet her as “doll” as he normally does. Instead, he breathed heavily in the phone.

“Daddy, are you OK?” Gullotta asked. When he didn’t answer, she called Atria in Daly City, the assisted living facility where he lived. Gullotta said staff told her that her father was OK, just hungry. Gullotta didn’t believe them and instead removed her father from the facility that day and brought him home.

Within two days, her father was in the hospital and doctors suspected he had COVID-19. Her father died from the virus in April.

“How could they have missed something so serious?” Gullotta said. “I don’t really understand it, and I’m not sure I ever will.”

Atria did not return a request for comment.

For two months this spring, Dave Sander didn’t know if his 93-year-old father had COVID-19. James Sander seemed well cared for at Carlton Senior Living, his assisted living facility in downtown Pleasant Hill. The facility was routinely testing residents. Sander knew it was likely his father wasn’t sick, but wanted to be sure. His father had memory loss and couldn’t properly communicate details of the test himself.

So Sander, his father’s representative, asked staff at the Carlton Senior Living facility, who said they didn’t know. They said he’d need to talk with the doctor at Kaiser, who refused to say. Sander’s calls to the executive director of Carlton went unanswered.

“I was concerned that I didn’t really know what my dad was facing,” Dave Sander said. “I would wake up in the middle of the night not being able to go back to sleep.”

After The Chronicle inquired about Carlton’s communication protocols and shared Sander’s story, Sander heard back about his father’s test result: negative.

The brick wall left Sander and his wife, Debbie Sander, feeling frustrated and afraid. Debbie Sander said the lack of information was “unconscionable.”

“Where is the staff-family relationship?” she asked. “I realize that they have been fighting fires for at least two months, but that doesn’t excuse the lack of honest information for families.”

Sarah Ravani is a San Francisco Chronicle staff writer. Email: sravani@sfchronicle.com Twitter: @SarRavani