Treva Steele visited her father every day after he moved to Greenwood Healthcare Center in Greenwood, Indiana, in February. Joe Barton, who was 73, was recovering from open heart surgery and on a ventilator.
On one of her visits, Steele walked into his room and saw him gasping for air. Soon, staff were performing CPR.
“He was basically dying in the bed in front of me,” Steele says.
Barton was rushed to the hospital, and got better after a short stay. Steele was concerned about his care at Greenwood. Nursing homes had restricted visitors to limit the spread of COVID-19, so she wouldn’t be able to continue visiting him every day. But he went back to the nursing center in mid-March.
“I almost thought like, OK, great, I'm sending him back to the wolves,” Steele says.
Back at Greenwood, Barton contracted a bacterial infection. He was hospitalized a second time in April, and died there last week of factors including complications from COVID-19.
New federal data show nearly 32,000 Americans in nursing homes have died of COVID-19. And in many states, including Indiana, long-term care facilities account for almost half of total COVID-19 deaths.
Steele wishes she’d had more options for her father. But she found there were limited nursing facilities that could handle patients on ventilators.
And in Indiana, it’s difficult to tell what facility might be safest, because the state doesn’t require individual nursing facilities to publicly report their cases and deaths from COVID-19. The state reports total cases and deaths, but not where the victims live.
Groups like Indiana AARP have called for the state to release that information. State director Sarah Waddle says consumers need it to make informed choices for themselves and family members.
“It's important for the community to know what might be happening in their backyard,” she says. “I may have a loved one coming out of a hospital and I want to do a little research about maybe where I want to place them.”
Indiana’s neighboring states of Illinois, Ohio, Kentucky and Michigan report COVID-19 cases at specific nursing facilities.
And some nursing home operators in Indiana have begun releasing that information. Waddle worries that could be confusing for families, as facilities may not post the same information or update it regularly.
“What we're building now with this patchwork system of all of these different entities trying to gather the data and post it on their websites, that's what's going to get us in trouble,” she says. “There's one really simple way to clear that all up, and that's just for Indiana to make the data that they are getting every day available to the public.”
The state’s data also doesn’t line up with new numbers from the Centers for Medicare and Medicaid Services. Dr. Daniel Rusyniak, chief medical officer of Indiana’s Family and Social Services Administration, says that could be because of differences in how the state and CMS collect data.
“We are currently looking into these differences and trying to figure out how we get closer to the real number,” he said at a news conference on June 3.
CMS says its data is preliminary and will change as more facilities report cases and deaths. And there are already clerical errors. According to the data, Transcendent Healthcare of Boonville in southern Indiana has had 75 COVID-19 deaths. But Transcendent Healthcare’s director of community relations Brynn Payne says the center hasn't had any COVID-19 deaths – they haven’t even had a single case.
In comparison, the federal agency’s data shows Greenwood Healthcare Center, where Barton was recuperating, has had one COVID-19 death. In reality, the facility has had 35 deaths, according to its corporate owner, CommuniCare Family of Companies.
CommuniCare operates 18 skilled nursing facilities in Indiana. Spokesman Fred Stratmann says the company is in contact with residents and their families, but is not releasing the deaths and cases at each nursing facility to the general public.
“We have strived to not focus on numbers because our residents are not statistics or numbers to us,” he says. “They’re faces, they’re names, they’re habits, they’re people we get to know and bond with.”
Before Barton died, his daughter filed a complaint with the state department of health about her father’s treatment at Greenwood. Stratmann couldn’t comment on the complaint, but encourages families to contact their nursing facility’s administrator if they have concerns with care.
Meanwhile, nursing home deaths continue to climb in Indiana. As of this week, more than 1,000 long-term care facility residents have died of COVID-19.
This story was produced by Side Effects Public Media, a news collaborative covering public health.