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When it comes to the coronavirus, nursing home secrecy frustrates familiy members

Milford Daily News, Mass. — Jeannette Hinkle and Trevor Ballantyne Milford Daily News, Mass.

May 23-- May 23--Each week, the state Department of Public Health releases information showing which nursing homes have coronavirus outbreaks.

The data the state releases is limited, showing only the general ranges of COVID-19 infections at skilled-nursing and long-term care facilities. More than 30 cases at Casa de Ramana in Framingham. More than 30 cases at Westborough HealthCare in Westborough. More than 30 cases at Sudbury Pines Extended Care in Sudbury.

When actual numbers are released, they are often far higher than the maximum range suggests. Briarwood in Needham is listed as having more than 30 cases, which is the highest range offered. But a spokesperson for the skilled-nursing facility said the actual number is 91 residents and staff who have tested positive since late March.

Conspicuously absent from the data is the number of coronavirus-related deaths at individual nursing homes.

"Due to patient confidentiality policies, we are not reporting the number of deaths by facility but are including them in aggregate," a DPH spokesperson told the Daily News on Monday.

As of Monday, the state logged 3,574 deaths in skilled-nursing and long-term care facilities, 60.9% of Massachusetts' total death count. More than 30% of nursing home deaths have been reported in just the last two weeks.

But other states, including Connecticut and New York, are releasing the specific number of deaths at individual nursing homes.

The New Hampshire Department of Health and Human Services releases both the number of cases and fatalities recorded at specific long-term care facilities on a weekly basis. As of Monday, 79.6% -- 134 of 172 -- of all deaths in the state had been reported at long-term care facilities.

"Our goal is to release as much information as possible in order to protect public health, while taking care to safeguard the private health information of individuals," said Kathy Remillard, public information officer for the state's health department. "New Hampshire releases data during public health outbreaks when that information is necessary to help our citizens make informed decisions about their health."

Numbers not personal

A bill being debated by Massachusetts lawmakers would require the state Department of Public Health to release exact case numbers and exact death tolls by nursing home -- data the agency already collects -- to the public.

A senior Senate official who worked on the bill but did not want to be named told the Daily News this week that lawmakers believe the state DPH could release the specific number of COVID-19 cases and COVID-19-related deaths by nursing home without violating privacy laws.

Some data, including certain demographic information, could be a privacy concern, the official said, but case counts and death tolls by nursing facility should be public.

"When you're talking about numbers, you're not getting into personal identifying information," the official said.

If the bill becomes law, which seems likely, the state DPH will be required to report to lawmakers within two weeks any challenges the agency faces with reporting the data.

"So if they're having a problem with posting this number because of privacy laws, they're going to have to put that in that report and clearly spell that out for the Legislature," the official said.

State Sen. Patricia Jehlen, D-Somerville, is one lawmaker pushing for the release of nursing home death tolls, but she told the Daily News this week that the bill is an unnecessary delay. Gov. Charlie Baker could order the release of the data now, she said.

"They have the numbers," Jehlen said on Wednesday. "They could be making a difference in how we act in nursing homes and assisted living and in the community but that information isn't available and it is extraordinarily frustrating."

Case ranges, as published, "mean nothing," Jehlen said, adding that privacy laws should not be a barrier to releasing the number of fatalities at individual nursing homes.

"I do not know whose privacy is invaded," Jehlen said. "In the bill, it says if anything was in contravention with HIPAA, or any other privacy law, that the department could redact it or they could report it in a different way."

Wednesday's report from the COVID-19 Command Center shows that, for at least at two state facilities, privacy laws are not a concern when it comes to releasing specific case numbers and death tolls.

In that report, the state lists several specific statistics about the coronavirus outbreak at the Holyoke Soldiers' Home, which has attracted national attention for the mounting death toll there.

According to Wednesday's report, 89 Holyoke Soldiers' Home residents have died, 74 who tested positive for the coronavirus, 14 who tested negative. The COVID-19 status of one person is unknown.

The state also reported that 77 Holyoke Soldiers' Home residents have tested positive for the virus, 58 residents have tested negative, and zero residents have pending test results. The report even went so far as to list the current location of each resident (104 are on-site, 31 are off-site, all but one at a dedicated skilled nursing unit at Holyoke Medical Center).

The report also lists specific case and fatality numbers for the Chelsea Soldiers' Home, where 30 resident veterans who tested positive for the coronavirus had died as of Wednesday.

Information like that is crucial for families trying to make decisions about their loved ones' care, Jehlen said.

"I have at least one constituent who is trying to decide if she wants to bring her mother home. When she knows what it is like inside the building, it is easier for her to make that decision," Jehlen said.

On April 6, the state Department of Public Health reminded long-term care facilities to use the Health Care Facility Reporting System (HCFRS) to report any deaths presumed or confirmed to be related to COVID-19. From there, municipal health departments can access the numbers through an online portal.

The Daily News requested the number of deaths at each of the state's nursing homes from the state Department of Public Health on May 18, and will report on the agency's response.

Reporting requirements

CDC reporting rules announced on May 6 require the nation's 15,000 nursing facilities to report COVID-19 data to the federal government, including the specific number of fatalities.

"All of the information we are asking for will be nationally available," Jehlen pointed out. "There is no reason for the governor not to have done it by now."

Because the state does not publish the number of deaths at specific facilities, Massachusetts residents usually only learn about fatalities at skilled-nursing and long-term care facilities that choose to divulge their death tolls to family members or to the media.

Ron Doty, administrator at Marlborough Hills Rehabilitation & Health Care Center in Marlborough, told the Daily News on May 15 that 21 residents and one employee of the skilled-nursing facility have died after contracting the coronavirus. At that time, 70% of Marlborough's coronavirus-linked deaths occurred at Marlborough Hills.

Sharing the number of people who have died at Marlborough Hills is difficult, Doty said. But he thinks the information should be shared.

"I don't want to talk about it," Doty said. "I definitely don't want to talk about losing a member of our family here that's been working to keep these folks safe, but at the same time, it's a part of it. It's a metric that should be looked at and reviewed and measured and communicated."

Other nursing homes have taken a different tack, refusing to divulge the number of people who have died from the coronavirus while living or working there.

In response to multiple Daily News inquiries, Casa de Ramana in Framingham declined to share the number of people who have died there after contracting the coronavirus.

"As is consistent with all of our communication, the privacy of our residents, families and staff will be respected," a statement emailed to the Daily News read. "As always, our first priority is the health and well-being of the vulnerable population that we care for."

Framingham Health Director Sam Wong also declined to share how many people have died at Casa de Ramana specifically. Framingham has released the number of deaths at the city's nursing homes in aggregate, but the health department has not released the number of deaths per facility.

Wong said that if the state Department of Public Health began releasing the specific number of deaths at each facility, or even the specific number of cases at each facility, he would do the same.

"We follow their lead," he told the Daily News.

On May 19, Shelley Buma, a lifelong resident of Whitinsville, an unincorporated village in Northbridge, emailed her local health department. She wanted to know how many residents of the town's skilled-nursing and long-term care facilities had died.

The question was personal. Buma's aunt, 88-year-old Irene VandenAkker, is a resident of St. Camillus Health Center in Northbridge. As her cognitive health declined, the close-knit family eventually determined that VandenAkker needed to move out of her longtime home, across the street from the homes of her three adult sons, and into a skilled nursing facility. She moved into St. Camillus in January.

'The call'

It was a tough decision. VandenAkker was worried she would be cut off from her children, her grandchildren and her sister, Buma's mother. The family assured her they would visit her frequently, and they did, until nursing homes across the state shut their doors to visitors in March as the virus spread.

"Things were happening throughout March and April, and we're just all holding our breath," Buma remembered. "And then the call."

On May 6, St. Camillus notified Irene's family that she had tested positive for the coronavirus. From there, the family continued to receive robocalls from the nursing home that listed the number of positive residents and the number of positive staff, but made no mention of how many people had died from the virus.

Irene's son Keith VandenAkker told the Daily News that he has learned from friends that residents have died at St. Camillus, but he hasn't received any formal notification of the deaths from the nursing home. The Daily News reached out to St. Camillus and but hasn't received a response.

The public has a right to know how many people have died from COVID-19 at the state's nursing homes, VanderAkker said.

"You don't like to hear them sometimes, but you can't avoid facts, and I think in a pandemic of this level, we need to know the facts," he said. "Things can't be hidden. If it is this deadly and it is this serious, the public needs to know. Facts can be ugly, but you can't shy away from the facts."

After Irene VanderAkker was diagnosed, Buma began researching how the coronavirus was affecting the state's nursing homes. She was shocked to learn that data showing how many residents had died at St. Camillus, and other nursing homes, from COVID-19 was unavailable. She reached out to state lawmakers who offered little help, and then to her local health department.

The response she received upset her.

"That is not being tracked at the local level -- you can check out the MDPH web site for their data -- link provided below," an administrator for the Northbridge Board of Health wrote.

When she got that email, Buma already knew the state DPH website would be no help.

"Now that I know that DPH has the information and is keeping it from me, I'm more infuriated," Buma told the Daily News. "No privacy issues are at stake here. That's laughable. That's a sham."

One day, Buma might have to decide if her mother, Irene's sister, needs additional care. If that day comes, Buma said, she wants to know how the nursing homes she considers fared during the pandemic.

"If that's what's needed, we have a right to know which homes are better able to control infection than others so we can make an informed decision," Buma said. "In this heavily regulated, heavily subsidized industry, I am finding out that we are completely in the dark. Not only are we locked out from our loved ones, we're locked out from the data. You get our money. We don't get the data. It's so wrong."

On Friday, Buma, who has worked to get the information from other sources since her aunt was diagnosed, emailed the Daily News to say that St. Camillus staff informed her that 14 people have died there since May 3.

Doty, the administrator at Marlborough Hills, said he understands why some nursing facilities haven't been transparent with the number of deaths they've sustained.

"Maybe they don't want the attention or they don't want the ramifications that could possibly unfold because of divulgence of information like that," Doty said. "It could be the path of least resistance."

But Doty thinks it is important for the public to understand how many people are dying at the state's skilled-nursing and long-term care facilities.

"(Deaths are a metric) to measure the significance, the importance, the severity," Doty said. "Like, people, stay home. This isn't a joke. This is not the flu. This is killing people. Start taking it seriously and stop saying this is a government thing. I've heard it all and it just makes me sick because I see the folks that are flat out on 10 liters of oxygen here, trying to get their lung capacity back."

Jehlen said death tolls are also important in terms of accountability.

She believes Massachusetts was slow in efforts to protect nursing homes, which were nationally recognized as potential coronavirus hotspots when an outbreak devastated a skilled-nursing facility in Kirkland, Washington.

"How do you get the attention of people who make decisions if you don't have that information yourself?" Jehlen said. "And the people with decisions knew, and they did not act, in my opinion, adequately."

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