Seniors reject blame game over how long-term care deaths were counted

Corrected error was unfortunate, but wouldn’t have changed policy, according to advocates for the aging

COVID molecules coronavirus
Coronavirus COVID-19 computer generated image. (Getty Images)

As the death toll rose over the course of 2020 from the coronavirus pandemic, a large number of the reports entered in the state database lacked a significant piece of information: the living situation of the person who had died.

Last week, the state Department of Health Services (DHS) announced an update for about half of those people, identifying them as residents in long-term care. The result nearly doubled overnight the percentage of COVID-19 fatalities associated with assisted living facilities or skilled nursing homes.

Since then, Republican lawmakers have turned the change into a cudgel against the administration of Gov. Tony Evers, with accusations of mismanagement and incompetence. But on Tuesday, advocates for seniors and for their loved ones rejected those attacks.

“I think it’s a big kerfuffle over nothing really,” says Helen Marks Dicks, state advocacy director for AARP in Wisconsin.

Both Dicks and Janet Zander, advocacy and public policy coordinator for the Greater Wisconsin Agency on Aging Resources, say that ideally they would have liked the information sooner. But they don’t see how it would have significantly changed the state’s approach to the pandemic.

“I see the Legislature blaming the governor, and the governor’s defending himself,” says Zander. “While everybody else is trying to figure out whose fault it is and why it happened, it’s the folks living in our long-term care facilities and their family members who have the most at stake.”

Neither Dicks nor Zander give the administration or DHS perfect grades in handling the pandemic, especially early on. But both say they believe that the specific error — misclassified deaths — was understandable under the circumstances and might not have been avoidable.

Reporting gap

The controversy arose after DHS disclosed on March 17 it had reclassified the living situation for about 20% of people listed in state records of COVID-19 deaths. In entering the records, the state classifies a person’s living situation in one of four ways: a long-term care facility; another form of group housing; not in group housing; and unknown whether the individual lived in group housing.

The group housing identification has been important because of the role that congregate living has had in enabling the spread of the coronavirus. Until recently, for nearly half of the people who have died — 46% — the record showed that it was “unknown” if they lived in group housing.

The database in which information is recorded is called the Wisconsin Electronic Disease Surveillance System (WEDSS). Laboratories and health care providers enter information about coronavirus infections and COVID-19 deaths into the system, according to DHS, and local health departments as well as the state use it to compile reports, usually daily, on the number of cases and deaths.

The raw data includes identifying information and addresses. In the process, said Deputy Health Secretary Julie Willems Van Dijk at a media briefing on March 18, “it was common for some fields to be empty or boxes left unchecked, due to the inability of the disease investigator who conducted the interview to collect that particular information.”

Although addresses might be listed, the nature of the person’s housing was left blank for many records of cases and deaths, she said, and the addresses by themselves weren’t sufficient for investigators to draw a conclusion.

The decline in coronavirus infections since early 2021 has allowed time for DHS to go through and clean the data, Van Dijk said. That work included corrections in the numbers of confirmed and probable cases of COVID-19.

Through its division that regulates nursing homes, assisted living homes and other long-term care facilities, the agency was able to match long-term care providers with the addresses of about 1,000 whose group-living situation had previously been listed as “unknown.” The change increased the percentage of people who have died in long-term care from about 25% to 45%, and reduced the percentage whose housing was listed as unknown from 46% to 26%.

‘People were very overwhelmed’

Both Zander and Dicks find the explanation for the gap in data entirely plausible.

“I can only imagine as the stories unfolded of medical examiners, coroner’s offices and the high volume of work that they were doing, and bringing in extra people that helped with the work, how easy it would be to not have all the data that one needed on those death certificates,” says Zander. “So I understand why there was a lot missing in the unknown data.”

“People were very overwhelmed in the beginning,” says Dicks. And while nursing homes were required to report deaths to the federal government, which regulates them, assisted living and other forms of long-term care that the state regulates “didn’t have to report to anyone in the beginning.”

As DHS investigated outbreaks in long-term care, at first the department held back from publishing the locations. “We pushed early to get the transparency and to get them to post where the outbreaks were, because we wanted families to know,” Dicks says, and the agency soon changed course.

The initial reluctance of states to disclose outbreak sites in nursing homes was nationwide, she adds. “The AARP had to do this kind of pushing in every state,” Dicks says. “We saw the early trends about how high the infection rate and how high the death rate was.”

The fact that nursing home deaths were, on paper, much lower than in other states was surprising at the time, Zander says. With the update, “it’s not terribly surprising that Wisconsin is right in there with everybody else in the long-term care industry.”

But neither she nor Dicks sees any evidence that anyone was trying to conceal long-term care deaths.

“The industry was upset about any data being reported,” says Zander, and once DHS decided to report it, there was no reason to hold back deaths on purpose.

“It wasn’t like the deaths weren’t reported,” she adds. “The total number didn’t change — it’s not like they were being hidden completely.”

‘What if’ scenarios

On Monday, Republicans in Wisconsin’s congressional delegation sent a letter to Gov. Tony Evers charging that “the failure to accurately classify these deaths obscured the truly dire situation in Wisconsin’s long-term care facilities,” and asked why the living situations for 26% of people who died from COVID-19 remained unclassified.

“The failure to accurately classify these deaths obscured the truly dire situation in Wisconsin’s long-term care facilities,” states the letter. “Had this information been accurately reported in real time, medical personnel could have targeted the limited supply of medical resources available to them toward long-term care facilities.”

It’s not clear, however, that would have made any difference. Dicks says that DHS officials have told her that they were sending nursing homes requested personal protective equipment (PPE) and operators were telling the agency they were satisfied with the supplies they received. 

At the same time, however, nursing homes were reporting PPE shortages in reports they filed with the federal agency that regulates them, the Center for Medicare and Medicaid Services (CMS). AARP used those reports to compile its nursing home dashboards for every state, monitoring the impact of COVID-19 on staff and residents. 

Dicks says DHS officials were perplexed  by the apparent contradiction between what they were hearing from the industry and what AARP was showing in its dashboard reports every four weeks — a contradiction that was never explained. “I said, ‘Well, we’re only reporting what they’re telling CMS. And if they’re telling CMS one thing and you another thing, there’s nothing I can do about it,’” Dicks says.

Finger-pointing

Another ‘what-if’ scenario that administration critics have floated appears further off-target.

After DHS published the new number for deaths in long-term care, former Lt. Gov. Rebecca Kleefisch took to Twitter to suggest that the new information meant all of the other recommendations for avoiding the virus had been pointless. She tweeted:

Lieutenant Governor Rebecca Kleefisch visits the Gateway Technical College SC Johnson iMET Center January 31, 2014 Photo by Gateway Technical College CC BY-NC-ND 2.0
Then-Lt. Gov. Rebecca Kleefisch visits the Gateway Technical College 2014 | Gateway Technical College CC BY-NC-ND 2.0

“We now know 45% of COVID deaths came from long-term care. Tony Evers terrified a state full of people into quarantining for a year when their risk of dying from this was nowhere near what was insinuated.”

Both Dicks and Zander dismiss the notion that information about more deaths in long-term care would — or should — have changed precautions for the rest of the public.

“That doesn’t make any sense to me,” says Dicks. “Where you have your outbreaks in nursing homes, community spread is pretty high. The difference is that nursing homes have old people.”

Employees come and go from their communities to the nursing homes and assisted living centers where they work, Zander observes.

“It’s not the people who stay in them that are spreading it around, it’s the people who come in and out — and they get it somewhere,” she says. To ignore the spread outside and just try to stop the virus inside those facilities “would be really short-sighted.”

Amid the finger-pointing over how COVID-19 deaths were classified, Zander says the challenges that long-term care has struggled with for years and were only underscored by the pandemic are getting obscured.

“Staffing levels and training and all of those things that play into infection control in the first place seem to be forgotten,” she says. “And at the end of the day, pandemic or no pandemic, those are really big issues that need to be addressed.”

She believes consumers — residents and their families — need to be at the center of the discussion.

“The most transparent we can be with our data for their sake, so that they can make informed choices about their future and their care — that’s where we need to put our emphasis,” Zander says. “So let’s figure out how we can do better. And let’s make that happen for them.”