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'I Just Want To Know': Families Of Nursing Home Residents Demand Coronavirus Details

An illustration of a man trying to reach a nursing home. April 30, 2020.
David Kovaluk | St. Louis Public Radio
Some nursing homes are not informing families about workers and residents who have been infected by the coronavirus. Federal agencies plan to change that, but it's unclear when or how they will require facilities to report to families.

Updated at 4:30 p.m., May 1, with details about Missouri’s plan to identify the number of nursing homes that have coronavirus cases.

In mid-April, Tim Distler’s sister told him that two residents at their mother’s nursing home had tested positive for the coronavirus. 

His sister had learned about the infected residents from their mother’s doctor, so Distler wanted to confirm the information with the director of admissions at Delmar Gardens in Fenton. 

But like many family members seeking information about how nursing homes are taking care of their loved ones, he struggled to reach anyone at the facility. With the coronavirus spreading in nursing homes across the country, state and federal officials are responding to demands for more information on long-term care facilities.

Distler said that when he reached the Fenton facility’s director of admissions, she said there were no cases at the Fenton nursing home. Then he called Delmar Gardens’ corporate office in Chesterfield, where an official told him that it would violate patient privacy laws to give him that information. 

“I’m not asking for specific names. I just want to know,” Distler recalled telling the official at the corporate office. “I don’t appreciate your director of admissions playing games here.” 

Distler said another corporate official eventually confirmed that two residents had been taken to a hospital, where they tested positive for the coronavirus. Later that week, Delmar Gardens’ workers told him that his mother had also tested positive for the virus. 

“It was like, 'What the heck?' I mean, we didn’t even know she was swabbed,” Distler said. “What kind of care have you been giving her? I asked them, ‘Is everyone in these protective gowns, face masks, everything like that? Have you told her? How did she take it?’”

Thousands of residents at nursing homes and assisted living facilities in Missouri and Illinois have caught the coronavirus in recent weeks. Some have had major outbreaks, such as Frontier Health and Rehabilitation in St. Charles, where at least 64 residents have tested positive and 17 have died. Edwardsville Care Center in Illinois has at least 54 residents who’ve tested positive and 12 have died. 

Families and long-term care advocates want nursing homes to better inform them about cases among residents and workers, and what they are doing to prevent infection. But many nursing homes have become stretched thin by the pandemic and don’t have enough workers to inform residents’ family members. 

Some advocates for nursing home residents say there needs to be more government oversight of facilities. Restricted access to nursing homes has made it difficult to know what precautions they are taking to protect residents, said David Terry, a lawyer who has represented nursing home residents and their families for more than two decades. Missouri health inspectors are not visiting facilities to limit exposure to the virus. 

“In my experience with some facilities, anytime the state takes its eye off of nursing homes, they will try to get away with something,” Terry said. “It’s like a little kid. Mom goes back inside and leaves them in the backyard by themselves.”

But families need to know what nursing homes have cases, especially if they’re looking to move the resident to another facility, Terry said.

“If you are sitting at home and Mom or Dad needs to go into a nursing home now, you should have the information available to you on what facilities have residents with COVID-19,” he said.

Frontier Health and Rehabilitation, a nursing home in St. Charles on March 27, 2020.
Credit Carolina Hidalgo | St. Louis Public Radio
Some nursing homes in Missouri and Illinois have had dozens of residents test positive for the coronavirus. Frontier Health and Rehabilitation in St. Charles has at least 64 residents who've tested positive, and 17 have died.

Doubts about plans to increase transparency

The Centers for Disease Control and Prevention will soon require nursing homes to report coronavirus cases. The Centers for Medicare and Medicaid also began requiring facilities Thursday to inform residents and their designated family members about other residents or workers who test positive for the virus within a 12-hour period. 

Federal officials have not detailed how they will enforce such requirements. But many nursing homes may find that difficult. Facilities have lost employees who have left to take care of children or had to quarantine because they have symptoms or became exposed to someone who caught the virus. Workers may have too much to juggle to inform family members, said Marjorie Moore, executive director of VOYCE, a group that advocates for long-term care residents and facilities in the St. Louis area. 

“When you’ve got staff that’s tasked with both answering phones and doing patient care, patient care should win out. But at the same time you have a lot of family members who have no idea what’s going on,” Moore said. 

On April 21, the Illinois Department of Public Health began publicly listing facilities with infected residents. The Missouri Department of Health and Senior Services plans to start identifying facilities with at least two infected residents Friday, Dr. Randall Williams, the department's director, said at a press conference this week

But Williams said Friday afternoon that state law prohibits the department from identifying nursing homes. Instead, he said the health department's website will show the number of nursing homes, assisted-living facilities and prisons in each county where people have become infected by the virus. 

Illinois and Missouri health officials last month also did not want to disclose which nursing homes have infected residents and workers, citing patient privacy laws. Missouri needs to identify them so that workers and residents are informed, said Lenny Jones, vice president of SEIU Healthcare, a union that represents nursing home workers in the state. 

“If you’re not honest and truthful with the information and sharing it out when it happens, that’s when rumors and fears start that are not based on fact,” Jones said at a June 22 press conference about nursing home worker’s rights. 

Delmar Gardens' Meramec Valley facility on April 30, 2020.
Credit Eli Chen | St. Louis Public Radio
Tim Distler's 82-year-old mother is a resident at Delmar Gardens' Meramec Valley facility in Fenton. She tested positive for the coronavirus in mid-April.

All families can do is keep calling

Tim Distler’s 82-year-old mother was hospitalized for six days at Mercy Hospital South. Her white blood cell count had dropped very low, he said. She had been recovering from cancer that developed in her lungs and back. 

“It’s hard because we can’t see her,” he said. “Sometimes we can talk to her, sometimes we can’t. It depends if she can hear the phone. We try not to bother her too much because she hasn’t been getting enough rest.” 

Distler’s mother has returned to her room at Delmar Gardens. She has lost so much strength that she needs workers to help her move on and off her wheelchair. It’s unclear if they tested her for the coronavirus upon her departure, he said. 

“I wish she was back at the hospital, actually,” Distler said. “She sounds pretty weak.” 

He’s optimistic that his mother’s health will improve. But he’ll keep calling the nursing home to make sure she’s doing all right. 

Correction: An earlier audio version of this story misstated the staffing situation at Frontier Health and Rehabilitation in St. Charles.

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Eli is the science and environment reporter at St. Louis Public Radio.