What I learned calling nursing homes across the country to ask about COVID-19 cases in their midst

It’s buyer beware for families who need to choose a nursing home right now. Nursing facilities have been ground zero for spreading the coronavirus, and the total number of deaths is staggering — some 32,000 deaths from COVID-19 as of Monday, about 30% of the U.S. death total.

Through the years reporters and patient advocates have advised families needing nursing home care to visit several facilities at different times of the day to see how they treat their residents. Most facilities are off limits to visitors and may be for a while. Families still need nursing homes, though, for a relative’s short stay after a hospitalization, for example, as they recuperate from virus complications, or for a loved one requiring permanent full-time care.

What are these families to do right now?

Earlier this spring as dead bodies piled up at the nation’s nursing homes, outrage surged, media outlets took notice, and the Center for Medicare and Medicaid Services, the federal government’s nursing home regulator, finally decided to act. It mandated that facilities disclose pertinent information about COVID-19 deaths to families of residents by mid-May. Each facility is supposed to release information such as suspected and confirmed COVID-19 cases among staff and residents; total deaths and COVID-19 deaths among residents and staff; and access to testing while a resident is in a facility.   

That was good news since in many states information about nursing home deaths had been hard to come by, as news outlets learned. When the Detroit Free Press tried to uncover the numbers of deaths occurring at specific facilities, county health departments refused to disclose the numbers, giving a number of reasons for their recalcitrance. The Detroit Department of Health said doing so “could place undue stress on these businesses.”

In Phoenix, The Arizona Republic and four local television stations sued the state Department of Health Services to obtain the number of residents testing positive at the state’s 147 nursing homes, as well as information about the availability of personal protective equipment at each facility — such equipment has been in short supply at many facilities around the country. One reason the department gave for not releasing the data the reporters sought is that it would be bad for business. In the end, the state prevailed over the media in Maricopa County Superior Court, where a judge ruled that the news outlets wanted “medical information” that was confidential under state law. It’s not clear whether the news organizations will appeal the decision, said David Bodney, attorney for the media.

One representative simply said, “We take good care of our residents.” At another facility, the director said, “We haven’t had any deaths due to COVID.” A few minutes later, she said, “We had a case or two, and some of the staff had tested positive — maybe seven or eight.” 

To find out how much a family could learn about a facility’s COVID-19 profile by shopping around via telephone, I called 12 nursing facilities, 4 each in Michigan, Arizona, and New York over the past week. I was particularly interested in the numbers of staff members who had been or were ill from the disease. That information was the most elusive. In my calls, I suggested I was a family member looking to possibly place a loved one in the home.

MICHIGAN: The admissions director at a facility in a Detroit suburb told me they had 11 active COVID-19 patients, but at one point they had “20 something and were not inundated by the hundreds.” The facility was not taking any patients with COVID to long-term care units now but did have a “fantastic COVID unit. Nobody is allowed in or out and staff must go through a separate door.” On May 27 the state began releasing numbers of positive cases from January 1 to June 1 this year. The state said at the time this facility had a total of 52. The Free Press reported last week that the state’s data may undercount the number of deaths the state has released. On June 4, the Free Press reported that data released by CMS showed a larger number of deaths at Michigan’s nursing homes than that provided by the state. The paper said because of discrepancies in the numbers, it’s not listing detailed facility information without more vetting. So, who does a family believe? 

At a facility in a rural area west of Detroit I asked about the testing of residents. “If they show symptoms, they’re tested. If they have no symptoms, they’re not,” an admissions official told me. As for testing the staff, she said flatly, “Our staff information is confidential.” The state’s website showed that this facility had reported no data to the state. One facility located in a wealthy area at the edge of Detroit told me it had no COVID-19 cases. At that point, state data agreed. The admissions officer said only residents showing signs of the disease are tested. “No employees are tested. The state doesn’t require that.” She added they would take only long-term-care patients coming from a hospital. “We just can’t take them off the street.”

ARIZONA: A representative at a Phoenix facility told me, “We don’t have to put it in writing anywhere, but the CDC mandated they inform incoming patients.” She did tell me the facility currently had 25 patients with the virus and had to notify incoming patients that “we have a COVID unit.” “That’s been the maximum and we have been removing people who have recuperated.” She also shared that 11 staff members had tested positive a month ago and were sent home to self-isolate. Another facility with about 70 residents said it had had no cases but had only “tested a few and they came back negative” adding “not everyone is tested.” The fact the facility had no cases put it in what she called “a select group.”

Another nursing home admissions official in Arizona said they were on “bed lockdown” meaning they weren’t taking new residents until the end of the month. On May 28, she explained, more than 100 of their residents were tested and “none showed any signs or symptoms. The testing was mandatory only one time.” At the same time the staff was tested for antibodies. Some results were back, and “there were no positive cases that I’ve heard of,” she said, referring me to a hotline that would give more information.

NEW YORK: Admissions staff at two upstate facilities, one in Waterloo and one in Buffalo, told me they had no active cases at the moment. One simply said, “We take good care of our residents.” At the other facility, the director said, “We haven’t had any deaths due to COVID.” A few minutes later, she said, “We had a case or two, and some of the staff had tested positive — maybe seven or eight.” The day I called the facility, which cares for some 400 residents, I was told it had no “active cases right now.”  

A large facility in Manhattan gave me the best information, some of it undoubtedly the result of Gov. Andrew Cuomo’s executive order in mid-May, which requires nursing homes and assisted living facilities to test all personnel twice a week and report the results the next day to the Department of Health. The admissions official said she couldn’t give me the number of patients with COVID-19 or the number of deaths, but gave me a PIN number to access a facility phone line which did offer nine pieces of relevant information a family would need to assess the facility’s COVID-19 status and monitor it daily. The information included such stats as the number of positive cases, the number of positive cases in the last 24 hours, and the number of deaths in the last 24 hours.  

For the most part shopping by phone was not very helpful, and I had no way to be sure the admissions officials were giving me reliable information. Wary staff members may be less than honest in what they tell prospective family members. Hotlines like the one from the Manhattan nursing home are very useful, but it it’s too early to tell whether CMS’s attempt at providing information for families will also be as useful and clear to prospective families as the data from the Manhattan facility were.

The nursing home story is not vanishing anytime soon, and news outlets can serve in an essential watchdog role right now, making sure that families with relatives in nursing homes and those who will have them in one in the future have reliable and useful data. It’s great to see news outlets in Arizona, Michigan, and Florida staying on the case, despite the legal obstacles. In Florida, recall the Miami Herald and other news outlets had to threaten legal action before the state released the numbers of COVID-19 cases and fatalities at each of the state’s nursing homes. On May 31 the Herald reported that the cumulative overall number of deaths attributed to the virus in the state doubled in May, while deaths at the state’s nursing homes and assisted living facilities tripled. In late May The Palm Beach Post published a lengthy expose of the failures of Gov. Ron DeSantis’ Whac-a-Mole approach to the crisis in the state’s nursing homes. Between April and May, the death toll at nursing homes and assisted living facilities increased almost 600%.

So far, the nursing home story has been hyper-focused on the numbers, less on the residents inside, who have had no visits from family members for three months now. Except for a few shots of families waving at the windows and sitting outside, we don’t know much about what’s happening inside. An Ohio woman whose 92-year-old mom is in a facility wrote to me a few weeks ago. She hasn’t seen her except through a window since February. She described what a facility nurse had told her. The nurse said “they’re in their rooms, crying and depressed. They’re not seeing their families They’re sleeping a lot.” Family members can’t take them to the doctor, the woman added. Family members can’t go in to monitor. We haven’t yet begun to cover the mental health crisis unfolding in these homes, as vulnerable seniors remain cut off from loves ones.

As the pandemic continues, reporting the human side of the nursing home crisis will be just as important as the numbers. 

Veteran health care journalist Trudy Lieberman is a contributing editor at the Center for Health Journalism Digital and a regular contributor to the Remaking Health Care column.