25 Investigates: State’s official COVID-19 death toll at nursing homes may not tell full story inside some facilities

25 Investigates: State's official COVID-19 death toll at nursing homes may not tell full story inside some facilities

BOSTON — Nursing homes in Massachusetts have been hard hit by COVID-19. More than 60 percent of the state’s 5,108 coronavirus deaths occurred in long-term care facilities, according to state data as of May 11, 2020.

But as 25 Investigates found, the official number does not paint the full picture of the problem at many facilities.

Families tell 25 Investigates reporter Kerry Kavanaugh it has been difficult to learn the true extent of the coronavirus outbreak at their loved ones’ nursing home and feel they are being left “in the dark.”

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”Toward the end, I think she knew there was something wrong in the home with the way things were being handled,” said Patricia Odnak, whose mother Marie was a resident of CareOne in Weymouth for almost six years. “It became a very chaotic situation."

Her mother, said Odnak, loved her music, dancing, and, most of all, her Boston sports teams. Even at 93, Marie was sharp and a constant advocate for her family and fellow CareOne at Weymouth residents, added her daughter.

Around mid-March, Odnak recalled, the home began taking steps to try to keep coronavirus out, but say very little was communicated to her family. Eventually, the facility went into lockdown and Odnak did not get a chance to see her mother. But, by early April Marie told her family “she was tired. She was exhausted. And she had quite a bit of congestion." On April 7, her mother tested positive for COVID-19 and “that’s when things went absolutely downhill from my mother,” said Odnak.

Her mother was abruptly moved to the facility’s COVID floor and, according to Odnak, she had to sleep in a dirty nightgown and many of her personal belongings were misplaced, including her dentures, which were never found. Marie’s oxygen levels eventually dropped and were so low that she had to be transferred to South Shore Hospital.

In a statement, CareOne told 25 Investigates “... our caregivers do everything they can for patients infected with the coronavirus. They hold hands and offer personal comfort, sometimes in a patient’s final hours.”

Marie died within days of arriving at the hospital.

“On Sunday afternoon, she wished us all a Happy Easter. She told us she loved us and she blew us a kiss. And she was dead four hours later," said Odnak.

To this day, Odnak says she does not know the extent of the coronavirus outbreak at CareOne, nor the circumstances of her mother’s death.

We asked CareOne for a breakdown of cases and deaths, but they declined. The state Department of Public Health (DPH) also would not provide more specific data about this or other facilities.

In Massachusetts, nursing homes are required to report exact numbers of coronavirus deaths and cases to DPH and then the state makes the numbers available to the public via the state’s COVID-19 dashboard.

Positive cases at individual facilities are presented in ranges between 10-30 or less than 10 and more than 30, while fatalities are aggregated into a single total number. Exact numbers of deaths are not reported by individual homes.

In several states, like New Jersey, Maryland and Colorado, coronavirus cases and deaths are reported by exact numbers and exact location.

As of May 11, 3,071 people have died in Massachusetts nursing homes, but the data does not specify where.

Families are not the only ones frustrated by the lack of specific information. Nursing home workers say they too often do not know the full story.

“When I got there they informed me that either everyone there had either tested positive and was symptomatic or had already been exposed. There was no one in isolation," said Kristin Adams, a registered nurse with more than a decade of experience who volunteered to help fight pandemic through the state’s MA Responds program. “I was told there’s there’s no one left to protect except for yourself.”

Adams was dispatched to work at a Weymouth nursing home. Though she did not want to publicly identify the facility, she says she witnessed chaos firsthand and a lack of adequate communication from day one on the job.

"I walked in and the nurse that I was relieving from night shift just handed me the keys and said, ‘Here you go.’ They didn't ask my name. They didn't ask me for any information at all,” she recalled. “It was shocking. I've never… I mean, I've been a nurse for 10 years and I've never experienced anything like that before. "

She said she was not the only one feeling left in the dark and seeking more information.

"I saw several patients that were angry that this had happened to them and that no one told them that this was coming or happening, or what they could do to prevent it,” she recounted. “Very poor communication."

Large clusters of cases and deaths at the state’s nursing homes often come to light because of whistleblowers. In late March, tipsters alerted local and state authorities to the situation at the Holyoke Soldiers’ Home, now the site of the nation’s largest deadly COVID outbreak at a nursing home.

Since the news broke, the state has been updating the situation there and at the Chelsea Soldiers’ Home daily. As of Monday, 74 veterans have died from coronavirus at the Holyoke facility and 29 died at the Soldiers’ Home in Chelsea.

Tipsters have also alerted Boston 25 News to clusters at a number of facilities throughout the state. In April, we were notified of deaths at Mary Immaculate Nursing Home in Lawrence, where the total number reached 41, and at the Belmont Manor in Belmont, where deaths reached 50. Earlier this month, we learned at least 54 residents died at the Courtyard Nursing Care Center in Medford, which is operated by Genesis Healthcare. Operators of these facilities were forthcoming with the numbers when contacted by 25 Investigates, and Mary Immaculate and Genesis also provided statements.

“It's so tragic and it's so infuriating all in the same breath," said Arlene Germain, policy director for Massachusetts Advocates for Nursing Home Reform.

"It was known from the onset, that this population was in the age range, and of the frailty that would be most susceptible. Plus, they live in such close proximity. So it was a recipe for disaster."

Even before the pandemic, many of the state’s nursing homes got low marks from the federal government. Data from the Centers of Medicare and Medicaid Services (CMS) show that 37 percent had overall ratings of below average or worse for deficiencies related to resident care, health inspections and staffing.

Germain believes the state is now actively addressing staffing and personal protective equipment shortages at long-term care facilities and commends the efforts to test all facility residents and staff. But, she believes increased communication would enable families to make more informed decisions.

“There needs to be transparency. It creates a lot of mistrust and it makes it sounds like facilities are trying to hide something,” she said. “All that's needed is basic information."

Patricia Odnak, whose 93-year old mother died of COVID at a Weymouth nursing home, said she would like to see more transparency from the state too and wants more oversight of the facilities.

“I need to be her voice. She was always everybody else's voice and she no longer has one of her own. Something needs to change, there needs to be reform. This population has been let down by our government and by our state,” she said. “Not that it's going to bring my mother or anyone else back but it would allow families to understand and maybe make a an informed decision going forward about how some of these places are handling this."

In a statement, DPH tells 25 Investigates: “The Department of Public Health expects nursing homes to meet their reporting responsibilities to residents and family members at all times, and particularly during this public health emergency.”

Just last week, CMS announced it will require the country’s 15,000 nursing homes to alert its residents and families of positive COVID-19 cases within 12 hours of confirmation. The agency also said the information must be reported to the CDC by mid-May. The CDC plans to begin making the information about nursing home coronavirus cases public by the end of the month.

The group representing the state’s nursing homes, the Massachusetts Senior Care Association, told 25 Investigates facilities have worked hard to prepare and confront this crisis. In an emailed statement they said:

Skilled nursing facilities prepared for this pandemic early on, following extensive infection control protocols issued by the CDC and the state. Nationwide, nursing homes have borne the brunt of COVID-19 and Massachusetts is no exception. Despite careful preparations, our population is both frail and elderly and most vulnerable to this insidious disease.

Early in the health crisis state and federal efforts to provide testing, PPE, and funding for staff wage increases to prevent shortages were insufficient. This crisis certainly exacerbated a preexisting staff vacancy problem that developed due to a hot economy and low state reimbursements for wage increases. Over the past several weeks our partnership with state officials has increased testing and access to PPE, and state funding of pay increases to boost staff numbers is welcome news.

Skilled nursing facility staff have worked tirelessly throughout this crisis, making personal sacrifices to provide compassionate care for our vulnerable population. They are true heroes like other healthcare workers on the frontlines.