‘They will not tell us how bad it is’: Families want more disclosure on nursing home coronavirus outbreaks

Melinda Cox with her mother, Janice Cox Pratillo, and sister Faith Shannon.Family photo

As the number of COVID-19 cases in long-term-care facilities soars, families are growing increasingly frustrated with state officials, saying they have allowed the sites to hide crucial information about how deeply the virus has infiltrated and how their loved ones are doing.

On Thursday, Massachusetts reported 1,633 cases among staff and residents of long-term care facilities, an increase of 32 percent from Wednesday, with some 159 sites reporting at least one case. The total is likely far below the actual number of cases because testing is still not universally available.

As the number of cases skyrockets, so has the worry and anger of families around the state who are unable to get information about their relatives.

“They will not tell us how bad it is,” said Mary Anne Ferreira, whose 91-year-old mother has lived at Bear Hill Rehabilitation and Nursing Center in Stoneham for five years.

Ferreira and relatives of two other Bear Hill residents said workers told them at least one resident has died from coronavirus and many more were infected. But the families say the facility’s administrator has not told families how many cases there are.

“This just creates more anxiety,” said Janet DiGangi, whose mother also lives at Bear Hill. She also said she is no longer getting updates on her mother’s condition.

Amid the worsening crisis, state officials have repeatedly resisted requests to release a list of senior housing facilities with positive cases, even as they conduct daily phone calls with those facilities and track the number of cases at each.

On Wednesday the state launched a hot line for families of nursing home residents, designed to connect them with the appropriate state agencies. But officials said the line does not provide information about the number of cases in individual nursing homes. The line, [phone], is open 9 a.m. to 5 p.m. seven days a week.

The COVID-19 Response Command Center said in a statement that the state is strongly encouraging facilities to maintain open communication with the families of residents, especially since visitation has been restricted.

“If a family is having difficulty communicating with a facility about concerns they have regarding their loved one, we will help them get answers they need,” added Thomas H. Lyons, a spokesman for the state.

But Ferreira said the hot line couldn’t tell her how many people had died of the coronavirus at Bear Hill or how many workers or residents had tested positive.

“It’s not helpful for anyone wanting to know what’s going on in a particular nursing home with the coronavirus," she said.

The state has ramped up testing in nursing homes. Last week it implemented a program with the Massachusetts National Guard that has now tested 2,031 people in 122 nursing and rest homes and a few assisted-living facilities. The large spike in the number of cases is likely due in part to the increase in testing.

Marylou Sudders, the state’s secretary of health and human services, announced Thursday that the program will be expanded to offer more mobile testing, so nursing facilities can request kits and administer tests on-site.

In the meantime, AARP this week joined the calls for the state to release the names of facilities with confirmed cases, and a state lawmaker filed a bill that would require more transparency.

Boston attorney Paul Tetzel, who specializes in nursing home abuse and negligence cases, said state and federal regulations require nursing homes to keep residents and family who oversee their health care informed, even during this unprecedented pandemic.

Some facilities have been more forthcoming. The Falls at Cordingly Dam, a Newton assisted living facility, announced Thursday that it’s had eight deaths, up from five earlier this week; 42 residents and 12 staff have tested positive.

But other family members are leaving voicemail after voicemail on jammed phone lines at nursing homes that are increasingly short-staffed because so many workers have fallen ill or been sent home to quarantine.

“The lack of communication is shameful. Human beings deserve better," said Melinda Cox, whose 73-year-old mother has early-onset dementia and lives at Beaumont Rehabilitation and Skilled Nursing Center in Westborough.

Cox’s mother was moved to the Westborough facility with two days’ notice last week from a sister site in Worcester that was relocating residents to become a COVID-19 recovery center for hospital patients.

Cox said her mother and other Worcester residents weren’t tested before being transferred, and the nursing home operator, Westborough-based Salmon Health and Retirement, hasn’t told her family if other relocated residents were also infected. She said her calls to the Baker administration to protest the involuntary move weren’t returned.

Cox said that she was not aware of the state hot line and that even if she knew about it, she wouldn’t use it. “In terms of the chain of communications, my mother lives on the first floor of a facility in Westborough,” she said. “Why would I call a hot line for the whole state of Massachusetts?”

Beaumont’s operator issued a statement late Thursday night saying “our priority at this time is direct staff communication with family members about their loved one." The statement said families are being informed if residents test positive or if there are positive tests at their location.

Cheryl Dennis, whose 89-year-old mother has lived at Bear Hill for two years, said she’s reached out to the governor’s office, health officials, and state lawmakers to try to find out how widespread the coronavirus is at Bear Hill and whether the National Guard could be dispatched there to do testing, but has had no response.

“How do I know they are doing the right thing for my mom when they’re not even saying what’s going on in there?” she said.

Stephen Buckley, the administrator at Bear Hill, declined to disclose how many residents have died from the coronavirus or how many residents and staff have tested positive. He said public health officials have asked that the home report numbers directly to them.

“We are making every effort to keep all families updated," he said in a statement. "Our staff are making several hundred calls a week to the families. If a resident’s condition changes, the family is notified.”

Maria Sbano’s 98-year-old mother has twice tested negative for coronavirus and is being isolated in the rehab unit at AdviniaCare in Wilmington. But Sbano said she didn’t realize there was an outbreak at Advinia, where seven residents have died and 77 have tested positive, until she read it in the news.

Often, Sbano said, when she calls to check on her mother, no one answers.

“Even if it’s every other day, just let us know what’s going on,” Sbano said.

AdviniaCare said it will issue a statement to families before the weekend. It said employees are “doing everything they can to keep families updated on the status of their loved ones.”

Laura Crimaldi of the Globe staff contributed reporting.

This story has been updated to add a comment from the operator of Beaumont Rehabilitation and Skilled Nursing Center.