Marvin Miles got a call from his mother on March 27. She had started rehabilitation about a month earlier at Bethany Pointe Health Campus, a skilled nursing facility in Anderson, Indiana. They had spoken almost daily since then, but this call was concerning because it came at 1:35 a.m.
“She was complaining about she couldn't breathe, and she had been pressing the nurses’ button for over an hour and no one would come in there,” Miles says.
Miles says a nurse eventually came and gave 70-year-old Martha more oxygen. Miles and his wife worried that his mother could have pneumonia again. She had been hospitalized with that condition, and when she came home, fell twice. After another hospital stay, she was sent to Bethany Pointe for rehab. The plan was for her to stay for a few weeks, until she was strong enough to come home.
After the early morning call, Miles and his father tried to contact Martha again throughout the day.
"We couldn't get through,” Miles says. “Nobody would answer the phones. We would leave messages and they never would answer the phone. They never would return our phone calls.”
Miles’ frustrations are shared by other families in Indiana. States have created a patchwork of requirements for providing information about COVID-19 outbreaks. Some states tell the public where cases and deaths have occurred. Others, like Indiana, only report the total number of cases and deaths at these facilities, and leave more detailed notification to the companies.
He finally spoke to his mother again later that afternoon. She told him she wasn’t feeling well and wanted to rest.
“And that was the last time I talked to her,” Miles says.
That was a Friday. On Sunday, Bethany Pointe staff called Miles’ father and told him they couldn’t find Martha’s pulse, and they were sending her to the hospital. Because of hospital visitor restrictions, Miles says family couldn’t be with her during the last hours of her life.
“It was really hard because I hadn’t seen my mom for about a month,” Miles says. “Nobody was there with her when she passed. It was just a very heart-breaking ordeal.”
Martha Miles, a retired social worker and grandmother of 17, was taken off a ventilator and died the next day, March 30. Her son says the family requested an autopsy and got the results after her memorial service.
“She had tested positive for the coronavirus, and that’s what killed her,” Miles says. “That’s what her death certificate says.”
Miles says his mother called about a week after she moved into Bethany Pointe and told him one of the residents had tested positive for COVID-19. But Miles says Bethany Pointe never sent the family updates on cases or deaths at the facility.
One-third of deaths
Martha Miles is one of 34 residents and staff at Bethany Pointe who have died of COVID-19. And her story is familiar to families across Indiana who have struggled to get information from long-term care facilities since they restricted visitors in early March, following guidelines from the Centers for Medicare and Medicaid Services.
“We've seen an increase in calls from frustrated family members because they're receiving little information about their loved one in the facility,” says Lynn Clough, Indiana’s state long-term care ombudsman. Her program advocates for nursing home residents and their families.
“Not being informed of cases in the facility has been a large issue that we've heard of from family members,” Clough says. “And the lack of contact with staff and/or the resident.”
Clough says families also complained that they tried to leave messages for nursing home staff, but voicemail boxes were full. And that they would receive different information about their loved ones from different staff members, sometimes on the same day.
More than one-third of deaths from COVID-19 in Indiana were residents of long-term care facilities, according to state data. The trend is similar in many other states that report these deaths, according to data from the Kaiser Family Foundation.
Late last month, the state released the total number of COVID-19 cases and deaths of residents at long-term care facilities, which include nursing homes and skilled nursing facilities, residential facilities and assisted living facilities. The data is updated on the state’s website every Monday.
As of May 11, 584 long-term care facility residents have died from COVID-19 statewide. There has been at least one death in 121 facilities. And there are 3,033 cases in 197 facilities.
Indiana’s decision to release that information came on the heels of new federal regulations that require nursing homes to inform residents and their families of new COVID-19 cases, as well as local and state health departments and the Centers for Disease Control and Prevention.
Indiana's numbers do not include cases and deaths of long-term care facility staff. The state says it is not releasing those numbers because some people work at multiple nursing homes.
“That could result in us counting somebody twice,” Dr. Daniel Rusyniak, chief medical officer of Indiana’s Family and Social Services Administration, said in a news conference on April 27. “We want to make sure the data we’re reporting is as accurate as can be, and so we will continue to work on cleaning up the data and looking at it, and we’ll add information as it’s verified and becomes available.”
The state also now requires nursing facilities to provide daily updates of COVID-19 cases to residents and approved family.
Clough says the Long-Term Care Ombudsman Program worked with the state to create that guidance.
“As we receive calls, it's going to help provide consistency with information delivery as we're working to help residents and their family members find out information,” Clough says. “We feel that communicating that information will go a very long way in helping calm fears of residents and their family members.”
State won’t release names of facilities
But many states go further. Indiana does not tell the public how many COVID-19 cases and deaths there are at specific nursing facilities.
At a news conference on April 24, Gov. Eric Holcomb said he would not direct the state department of health to make that information available to the public.
"We respect that private business, that nursing home, that is operating under our regulations and that’s where the relationship exists,” Holcomb said.
The Indiana Health Care Association/Indiana Center For Assisted Living, which represents and advocates for skilled nursing facilities and assisted living facilities across the state, also isn’t arguing for the state to release COVID-19 cases and deaths at specific facilities.
“We haven't taken a position as an association on the level of detail and when that detail might become available,” says the group’s president, Zach Cattell. “We understand the stress and we understand the concern. I know that nobody is looking to withhold information. They want to be able to communicate with family members. But we have to also make sure that the information is correct.”
Cattell says knowing the number of cases is important for public health investigation purposes, and that residents and representatives should understand the status of their facility. Cattell says it is the state’s responsibility to provide data to the public and the facility's role is to share it with residents and their representatives.
“What we don't want to have happen is we go to this very large kind of public disclosure scenario and the data end up being wrong. That doesn't really help anybody,” he says. “And what we need to be focused on is making sure that the individuals who provide the care and the individuals who are being cared for are being supported and making sure that they have all the tools necessary to be safe.”
Clough says she would support the state releasing facility-level data about cases, as long as it didn’t include the names of residents or other identifying information. She says families unable to get information about their loved ones, and residents with questions and concerns about a facility, can call or email the ombudsman for their county.
"Just because they move into a long-term care facility does not mean that they give up any of their rights,” Clough says.
But she warns families to be patient, as her office’s increased call volume means it can take them longer to return messages.
Because the state hasn’t released facility-level information, the governor’s daily news conferences are how people like Sarah Troutman first heard about deaths in nursing homes.
Troutman’s 88-year-old father Barry Jackson is also a Bethany Pointe resident, and has lived there since September. After he broke his hip last year, his dementia got worse and the family moved him to the nursing home permanently.
“His care was great,” Troutman said. “Just everything fell apart when the virus hit that place.”
On March 17, she went to Bethany Pointe to visit her father and was stopped at the front door. The facility was no longer allowing visitors inside.
“I left kind of feeling bummed out,” Troutman says. "But also relieved that they were taking measures, you know, cautionary measures.”
Troutman says the facility called and sent her a letter after its first COVID-19 case.
“And then nothing,” she says.
On Saturday, April 4, Troutman spoke with nursing home staff about her father. He has difficulty hearing, so when she can’t see him in person, she has to rely on staff for updates about his health. The following Monday, she watched the daily news conference, where state health commissioner Dr. Kris Box gave an update.
“And Dr. Box talked about her worst fears having come true: a long-term care facility had been hit by the virus,” Troutman says. “And I’m sitting here saying to myself, don't say it, don't say it, don’t say it. She was like, ‘In Madison County, Bethany Pointe.’”
Box announced there had been 11 deaths at the facility. The number has increased since then.
“And I thought, excuse me, what?” Troutman says. “Because I had heard nothing from the facility about deaths. Nothing.”
Troutman says communication has been more regular from Bethany Pointe since the state required facilities update family members. She says they send out group messages and call every other day or so to update her on her father’s condition. And she’s been able to go to Bethany Pointe and wave at her father through his window.
“They've worked harder on getting ahold of family members and keeping us in the loop,” Troutman says. “That has really helped to make me feel a little stressed out.”
Trilogy Health Services, Bethany Pointe’s parent company, has published the number of COVID-19 cases and deaths at its facilities in Indiana, Ohio, Kentucky and Michigan.
As of May 12, 38% of Bethany Pointe’s residents have COVID-19 or are presumed COVID-19 positive.
That includes Troutman’s father. He tested positive for COVID-19 but has few symptoms. Troutman says he’s lost his appetite and has lost weight.
“The fact that he's still here... I’m just like, wow, how fortunate are we?” she says. “Because 34 families aren't feeling that way.”
Trilogy Health Services did not respond to comment for this story. In a May 2 news release, the company stated, “We take communication with our employees, residents and families very seriously. We apologize and deeply regret if we did not communicate sooner to responsible family members; however, many families have been pleased with our overall communication efforts.”
That’s not comforting to Martha Miles’ husband of 53 years or her two living sons, including Marvin Miles. He says his family was “left in the dark.”
After his mother’s death, Miles and his father called the facility with no response for two weeks before they were told they could pick up her belongings from the front desk.
“They didn't call us to express their condolences or sympathy,” Miles says. “They didn't do anything.”
This story was produced by Side Effects Public Media, a news collaborative covering public health.