When New York Governor Andrew Cuomo was first accused of signing deaths in nursing homes from Covid-19, his administration offered a simple explanation:
The state did not include nursing home residents who died at the hospital in the publicly published list of coronavirus deaths linked to long-term care facilities, officials said because it wanted to avoid a “double count” of those deaths in the state as a whole.
But New York differs from other states by taking this approach to counting nursing home deaths, research experts said – a decision that made New York’s numbers of nursing home deaths look lower than it was, and it is now under federal investigation.
“It is difficult to compare state-level data, but New York is the only state that has explicitly stated that it excludes hospital-based deaths,”
In contrast, officials in other states, including Minnesota, Connecticut, Massachusetts and Vermont, said in recent interviews that they found ways to collect all deaths in nursing homes, including residents who died in hospitals without counting them twice by cross-referencing. the reports. from nursing homes with other data sources. Research experts, including Chidambaram, said they were not aware of any other state that counted deaths in nursing homes like New York did.
It has left both decision makers and researchers wondering why New York did not find a similar solution to avoid omitting thousands of deaths in nursing homes from the reported total.
“New York is kind of deviant when it comes to this issue,” said David Grabowski, a longtime nursing expert and policy professor at Harvard Medical School.
Each state has developed its own method of counting Covid-19 deaths in nursing homes as well as the general population. And New York said explicitly from the first months of the pandemic that its publicly announced number of deaths in nursing homes only included those that occurred on the spot, as opposed to in a hospital or elsewhere.
The state took this approach to avoid including these deaths twice in total all New York residents who had died of Covid-19, the state health commissioner, Dr. Howard Zucker, state lawmakers during a hearing in August on the administration’s handling of nursing homes during the pandemic.
“We do not want to double the number – this person died here and died there too,” Zucker said, describing the Cuomo administration as being “incredibly transparent in terms of information.”
New York officials also said it was important to verify reports of residents who died in hospitals before publishing these numbers, as the information provided by nursing homes was not always accurate, especially during the chaotic early days of the pandemic. .
“It’s natural to assume that they may not have as much information as what happened within their walls,” said Gary Holmes, a spokesman for the state health department.
Full coverage of the coronavirus outbreak
However, this approach led to New York omitting a large number of deaths from its publicly reported nursing home pay until recently. The state had said about 8,500 nursing home residents had died of Covid-19. But when New York finally included residents who died in hospitals, the total number shot up to approx. 15,000 – more than any other state in late January, according to a state-by-state census of long-term deaths compiled by the Kaiser Family Foundation. And the state only released the new total after its own attorney general issued a report last month accusing the Cuomo administration of signing the deaths.
The New York Department of Health said the delay in releasing the number of hospital-based deaths was due to a time-consuming verification process. Covid-19 reports that nursing homes and hospitals only submit daily, including initials and age of residents who died “to protect patient privacy,” Holmes said.
While more detailed data on hospital deaths are available, the information is entered into a separate system that often lags and does not include the name of a patient’s nursing home, he added. “Great lengths have been taken to ensure accuracy in data reporting from multiple sources.”
Holmes also said the recently released figures did not change the total number of deaths in New York from the virus, as all deaths in nursing homes were included in the number of statewide, no matter where they occurred.
Officials in other states in the Northeast and elsewhere told NBC News that they took a different approach to compiling a comprehensive census of residents’ deaths – whether they occurred at a hospital or at the facility – to avoid the double-counting problem that New York officials were concerned.
In Minnesota, for example, “deaths are categorized by residence,” said Scott Smith, a spokesman for the state Department of Public Health.
The state relies on self-reported data from nursing homes, which are asked to provide demographic information, date and place of death and other information. Minnesota also collects data from hospitals, labs, medical examiners and death certificates to match reports and exclude duplicate entries to avoid duplication, Smith said.
Similarly, Connecticut uses self-reported data from nursing homes, which are required to report the deaths of all residents “whether they occur in their facilities or after transfer to a hospital,” said David Dearborn, a spokesman for the state Department of Health.
The state is also relying on reports from the state doctor to prevent double counting in the total number of deaths, Dearborn said. “This process ensures an accurate state in total.”
Massachusetts uses a similar approach, referring to nursing home reports with death certificates to avoid double entry to capture total Covid-19 deaths in the state, a state health spokesman said.
While the pandemic was unprecedented in many ways, the data challenges associated with it are not new, said Grabowski, a professor at Harvard Medical School.
“Historically, public health officials have often had to distinguish between place of death and immediate place of residence before death,” he said. “I see no reason why other states were able to classify previous stays and New York was not.”
The basic data should have been readily available to New York officials, said Bill Hammond, a senior fellow in health policy at the Empire Center, an outspoken think tank that sued the state for not releasing its data on deaths in nursing homes. According to the New York data collection form obtained through the lawsuit, nursing homes are specifically asked about “the total number of Covid-19 residents who died outside your facility,” as well as the total number who died inside the facility itself.
“This is not a complicated thing to do,” said Hammond, who believes New York officials should have released both hospital and non-hospital deaths immediately and then cross-checked the information later if they felt it was necessary.
“They use the need for maximum accuracy and the difficulty of merging the two datasets as a justification for delaying” the release of public information, “he said.
There are other differences between the states as well as broader discrepancies in the data. New York and Minnesota, for example, are among the states that include probable Covid-19 cases in death rates, but some only count laboratory-confirmed cases.
Some states included employees in the total number of deaths associated with long-term care facilities, while others did not include them or separate them. Some states took months before releasing detailed information on deaths in nursing homes. And the facilities may not always report accurate information.
The long-term care industry itself is skeptical that more data would have made a big difference in the overall response to the pandemic.
“It’s just another piece of data that may or may not show,” said James Clyne, CEO and president of LeadingAge New York, which represents nonprofit long-term care facilities. “Has anyone looked at it and reached any conclusions? It is not as if anyone had this revelation because this information was released. ”
But researchers say complete information from the states is important for understanding the full impact of the pandemic on nursing homes. In the worst months of the pandemic, such data could help public health officials decide where to send resources first, lawyers said. It can also help researchers identify which factors left facilities most vulnerable to Covid-19 cases and deaths, and which policy decisions appear to help protect residents and staff.
In the first months of the pandemic, for example, the Cuomo administration came under fire for demanding that nursing homes accept recovering Covid-19 patients discharged from hospitals – a decision aimed at clearing much-needed hospital space. The guidance was effectively reversed by May, and government officials published an analysis that it was not a driver of disease outbreaks. But more comprehensive data on deaths from residents could help provide more definitive answers, experts and lawyers said.
Download the NBC News app for full coverage and coronavirus outbreak warnings
New York State Senator Gustavo Rivera, a Bronx Democrat who chairs the health committee, recently introduced a bill that required the state to disclose deaths to residents who died after being transferred to the hospital, and criticized the state’s decision to exclude them.
“Families and residents have suffered without knowing what is going on in the facilities during the Covid pandemic,” the bill said.
The federal government first began collecting national data on Covid-19 cases and deaths in nursing homes before the first week of May, and facilities were not required to provide information on previous months. So the state and local authorities were the only ones keeping track since the beginning of the pandemic – which is another reason why New York’s nursing home numbers are so important, researchers said.
“Accurate data is the basis of a policy that meets actual needs – which policies were most useful? Which policies were least useful? Said Chidambaram of the Kaiser Family Foundation. “The lack of accurate numbers did a disservice.”