Syracuse, N.Y. — As hundreds of people died from the coronavirus in March and April in nursing homes, New York state health officials scrambled to respond.
But state officials didn’t have some vital information: They didn’t know how many people had died in nursing homes.
They didn’t know because they didn’t ask.
Despite the heightened risk at nursing homes — Gov. Andrew Cuomo said they could provide “a feeding frenzy for this virus’’— state officials did not track the number of daily Covid-19 fatalities in them for the first month of the state’s crisis.
Each day before April 16, they surveyed all 613 nursing homes to ask how much hand sanitizer they had, but not how many people died in their facilities.
After families of nursing home residents and news organizations raised alarms about the number of deaths in Downstate nursing homes, the state hastily devised a new survey to gather more complete information.
"It was stunning to realize that the (department of health) had not been gathering information about nursing home deaths before that time,’’ said Dr. Elaine Healy, vice president of the New York Medical Directors Association. “It was as if the issue hadn’t been on their radar screen until then.”
The state’s clunky fact-gathering behind the scenes contrasted with the calm, data-driven style that is on display every morning during the governor’s news conferences.
The state hastily rewrote its questionnaires and sent nursing home directors back twice to count properly their death toll over two months, according to documents and recordings obtained by syracuse.com.
State officials started asking nursing homes to report their deaths daily April 16. But they were not blind to deaths in nursing homes before that, said Gary Holmes, speaking for the health department.
Based on a daily survey in use since March 9 — which asked nursing homes about Covid-19 infections and residents who died in hospitals, among other things — health officials often reached out to hard-hit facilities to ask them about their deaths and related issues, Holmes said.
That survey “led us to greater outreach to facilities that looked as though they needed potentially greater attention,’’ he said.
Early on, Cuomo’s team was focused on averting a looming crisis in hospitals, which were quickly running out of space and supplies. Some experts say that may have led them to give less attention to fatalities in nursing homes.
At the time, the state required nursing homes to accept Covid-19 patients to relieve overburdened hospitals. That widely criticized policy — reversed last week — might have been reconsidered earlier if the state better understood which nursing homes struggled with fatalities, said Dr. Tom Perls, a professor at Boston University School of Medicine.
The strategy now is to isolate such infected patients in coronavirus-only nursing home facilities or wings. “They could have done that sooner,’’ Perls said.
A widespread lack of reporting on nursing home deaths led to “horrible undercounting’’ of overall deaths, in New York and most of the country, Perls said. At least 14 states still don’t count nursing home deaths, according to the Kaiser Family Foundation.
Most states and countries that count aggressively find at least 50% of Covid-19 deaths occur in nursing homes, Perls said. New York reports that number at about 25%.
Asked why New York waited so long to thoroughly track deaths in nursing homes, Holmes said officials have had to adapt their data-gathering frequently during the pandemic as new needs are identified.
“This public health response continues to evolve,’’ Holmes said. “The data that we’re requesting — and the presentation of it — will evolve with it.’’
‘Urgent response required’
When health officials finally decided to collect fatality records from nursing homes, they wanted them yesterday, according to records obtained by syracuse.com.
On Wednesday, April 15, operators of New York state’s 613 nursing homes received an urgent email from the state health department. They were ordered to dial in to a mandatory conference call with Dr. Howard Zucker, the state health commissioner.
The email was sent at 11:46 a.m., according to a copy reviewed by syracuse.com. The conference call with Zucker was scheduled for 1 p.m. (It was later delayed until 1:30 p.m.)
It was the start of a frenetic, four-day scramble to get a body count from nursing homes. Each day, nursing home administrators and their medical staffs were ordered to drop everything and send numbers.
On the conference call, Zucker explained to the nursing home officials that he needed them to start reporting how many deaths they had from Covid-19. In addition to confirmed cases, he asked them to include “presumed” Covid-19 deaths of people who were not tested but whose symptoms matched the disease.
“That will help us as we move forward addressing the challenges that you’re facing,’’ Zucker said, according to a recording.
“Those numbers are pretty straightforward numbers,’’ Zucker continued. “And we would like to know that (number of deaths), based over the period of time from when this began, to now. So it’s not that we just want to hear, well, this is what it was yesterday. We’d like you to go back and look over the course of the past month or five weeks or six weeks. So that’s about 40 or so days, 44 days, 45 days.’’
Two nursing home operators complained that they were short-staffed and would have trouble compiling the information so quickly. Zucker responded that the information was vital.
“It’s really important information to have, and we’re trying to do this to help all of the residents in the nursing homes,’’ he said.
Zucker, who often appears with Cuomo at his daily news conference, said he would give them until the following afternoon to gather the information.
When the coronavirus hit in March, the state health department activated its emergency system to gather information daily from hospitals and nursing homes. Nursing homes were reporting daily how many residents had Covid-19, how many masks and face shields were on hand, and other important data. They also reported how many of their residents had died in hospitals.
But until the call with Zucker they were never asked about residents who died at their facilities. That turned out to be a big number. More than 5,500 nursing home residents have died in New York. Many experts say the true number is probably higher.
A question about in-facility deaths was added to the daily survey April 16. But it failed to ask for retroactive data. Instead, it asked operators to the number of deaths “since your last report.’’ In other words, since the previous day.
The next morning, April 17, the nursing homes got another email notice.
“URGENT RESPONSE REQUIRED,’’ it said. The health department needed answers to two additional questions, including: “What is the total number of residents who have died in your nursing home of Covid-19?”
The email was sent at 7:03 a.m. The deadline to respond was 8:45 a.m.
‘And you wonder why the data is garbage?’
There was still confusion. At 12:32 p.m., the health department notified nursing home operators of a mandatory webinar to go over how to respond to the surveys. The webinar was conducted at 1 p.m.
It was not recorded, so anyone who missed it was out of luck, said James Clyne, CEO of LeadingAge NY, which represents nonprofit long-term care providers.
Some questions posed to nursing homes were confusing, Clyne said. One question asked nursing homes to report how many Covid-19 residents died “outside your facility,’’ presumably in hospitals. But the next sentence said the numbers should not include “anyone who was NOT physically at your facility at the time of death.’’
“And you wonder why the data is garbage?” Clyne asked. “That’s why.”
The push to gather the data came amid growing demands for more information from families of Downstate nursing home residents, advocacy groups and the news media. In April, newspapers ran repeated stories about relatives who said they could not get information from their loved ones’ nursing homes.
“NY withheld nursing home Covid-19 details for weeks,’’ said a headline April 15 on lohud.com. “Thousands died. Here’s how secrecy impacted lives.”
On April 17, more than a month after New York’s first death, the health department released data for the first time revealing some 2,690 Covid-19 deaths in nursing homes. For the first time, the state identified facilities where at least five deaths had occurred, information for which relatives of nursing home residents had clamored. The data was greeted as both heart-breaking and incomplete.
The health department took another stab at getting a complete count April 18, a Saturday. Nursing homes got an email directing them to fill out a supplemental survey documenting every resident who had died of Covid-19 during the preceding six weeks.
“Commissioner Zucker is directing you, as the administrator, to ensure that appropriate staff are available at your facility today to provide accurate data,’’ the notice said.
The email was sent at noon. The deadline for completing the survey was 2:30 p.m.
The nursing homes were explicitly told to count all Covid-19 deaths in their facilities — whether confirmed by testing or presumed by a doctor’s judgment — going back to March 1. After two weeks, the health department announced that this review had identified more than 1,700 previously unannounced deaths during the preceding two months.
When the recount came out, it perplexed some local officials.
According to the state’s initial April 17 report, Onondaga County only had five nursing home deaths. But in early May, county health officials were shocked to learn that 19 previously unannounced local deaths were among the 1,700 discovered in the nursing home review.
At his daily news conference May 7, an exasperated County Executive Ryan McMahon reported that the county’s death toll had suddenly shot up 46%, from 41 to 60. McMahon said he had no details on when the additional deaths occurred.
“I’m very frustrated by that,’’ he said at the time.
‘Everything we’re doing is urgent’
Healy, of the medical directors association, said it was difficult for nursing home operators to respond to the demands for instant information while they were also dealing with the challenges of the coronavirus.
It was “extremely stressful on the (nursing) homes to have to scramble,’’ she said.
Health department officials say they, like health-care providers, are under enormous pressure to compile data at the same time they are working to fight the fast-moving pandemic. It’s a high-wire act that sometimes requires shifts in policy and urgent appeals for information.
“Everything we’re doing is urgent,’’ Holmes said. “There have been any number of different instances where we’ve asked urgent questions of all health-care facilities — hospitals as well — based on needing a greater understanding.’’
Some nursing home operators said the stress was not the fault of the health department. They commended state officials for doing the best they could under trying circumstances.
“The department has been very thorough in gathering the information they need to properly respond to this crisis,’’ said Edward Farbenblum, owner of Bishop Rehabilitation and Nursing Center in Syracuse.
New York state has struggled to develop a consistent and effective strategy to fight the coronavirus in nursing homes, syracuse.com reported earlier this month. The state’s response generally has been plagued by weak direction, inaccurate data and poor communication.
Perls, the Boston University professor, said some nursing homes initially underplayed their Covid-19 deaths out of fear of being branded with a “scarlet letter.’’ But the virus has spread so extensively that the facilities are less reticent to report now, he said.
It’s important to continue tracking nursing home fatalities, he said, because the coronavirus is still rampaging through many facilities and threatens others. As public officials figure out how to loosen the rules on social distancing, it will be critical to develop policies to keep the virus out of nursing homes.
Cuomo recently ordered nursing home employees to be tested twice a week for the coronavirus. Testing of residents has been less robust.
“What’s really important about recognizing the percentage of deaths that are occurring in nursing homes is, what to do we do moving forward?’’ Perls said. “We have to treat these (facilities for the elderly) differently from the communities. There has to be a wall put around these things. Everybody has to be tested.’
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Tim Knauss is a public affairs reporter for syracuse.com | The Post-Standard. Contact him anytime: email | twitter | | 315-470-3023