Alzheimer’s disease took Patricia Longo’s life last month at age 82.
But the pandemic, and the restrictions on family visits at her nursing home that quickly followed, extinguished whatever happiness she might have enjoyed in the last year of her life, said Melissa Sapia of Clark, one of Longo’s five children.
That’s why Sapia joined a group of 1,400 families who are now sending letters and emails pleading with the state Health Commissioner Judith Persichilli to guarantee and expand visitation rights, even as the number of coronavirus outbreaks continue to rise inside nursing homes and assisted living facilities. With more than 90% of residents vaccinated, there should be no reason the state should order or a long-term care facility should require another wholesale lockdown again, members of the group, FACE NJ, say.
Everyone who lives in a nursing home should be entitled to a “designated visitor” to provide “essential physical and emotional support” regardless of a health emergency, according to the letter. It’s a request backed by Laurie Facciarossa Brewer, the New Jersey Long-Term Care Ombudsman. Currently, the policy puts tight restrictions on visitation.
Sapia said she doesn’t want to see another family endure what hers did: her mother’s sadness and confusion about why her five children didn’t visit, and the frustrating negotiations with the facility’s management over interpreting vague state visitation policies.
“She begged us, ‘Why can’t you just come in here? I’m lonely, you are my kids. Why aren’t you here? We said we can’t,” Sapia said, explaining how she or one of her siblings were always there bringing homemade meals before the pandemic. “She didn’t have the ability to comprehend.”
This can’t happen to these poor people again,” Sapia said. “Across the board, I feel like we have learned so much. There are ways of going about it without shutting down.”
But in statements to NJ Advance Media this week, the Health Department gave no indication that it intended to change the visitation policy, noting that outbreaks of the virus in long-term care centers have mushroomed, affecting 14 facilities in June to 129 facilities Friday, according to state data.
“It is the responsibility of the Department of Health to take seriously the highly transmissible reach of the Delta variant and the spread that even a single outbreak can cause,” Health Department spokeswoman Donna Leusner wrote in an email. “One person infected with the Delta variant can infect between seven to nine people while the earlier variants infected between one to three people.”
The department would work to explain the policy more plainly, in part by issuing “a decision tree,” a written document that would assist operators “in allowing for safe visitation while doing outbreak testing,” Leusner said.
The state’s and nursing home industry’s caution is not surprising, considering New Jersey lost 7,899 residents and 144 employees to COVID-19, according to confirmed state health department data. The department says there are another 732 probable COVID-19 deaths among residents, so classified because there wasn’t a test or autopsy to confirm them. New Jersey has consistently had one of the highest death rates per capita in long-term care facilities.
State and federal visitation policies have evolved over time, from the introduction of outdoor visits in June 2020, to limited, scheduled visits in facilities for people classified as “essential” or “compassionate caregivers” in August, 2020. An order in March 2021 declared all facilities “should be allowing for direct, in-person visits for residents regardless of vaccination status,” state Health Commissioner Judith Persichilli said.
Ginger Vukas, the director of FACE NJ, said the March 2021 order has been interpreted differently by the nearly 600 long-term care facilities in the state. “There are still so many inconsistencies in how each facility allows visitation and more importantly, how they manage new cases of COVID,” said Vukas, whose mother died earlier this year at a long-term care facility.
“Many facilities stop outdoor visitation when there is just one positive COVID case in the facility,” Vukas said. “This is clearly not how the mandate is supposed to be implemented.”
An update of the federal policy issued in April should have helped clarify residents’ visitation rights, families say, but again, results have been mixed.
It says nursing homes and assisted living facilities must allow “compassionate care visits” regardless of continued outbreaks. Residents qualify for these compassionate care visits if they are grieving the recent death of friend or family member; struggling to adjust to life at the facility after having lived with family; exhibiting signs of depression, such as frequent crying or refusing to speak; refusing to eat without the encouragement of loved ones; or nearing the end of their lives, according to the policy.
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Laurie Facciarossa Brewer, the Long-Term Care Ombudsman, whose office regularly mediate visitation disputes between families and facility operators, says the policy doesn’t go far enough.
“There should not be a value judgment made whether that resident is suffering enough to have a compassionate care visit. We down need the pain and suffering arbiters to decide,” Facciarossa Brewer said. “Anybody in long-term care who have been subject to the lack of activities and restrictions on visits...deserves compassion and compassionate care.”
“They need to have certainty they will have that connection to their family, regardless of the surge,” she added
Staffing levels are down across the board in nursing home, Facciarossa Brewer said, so having family or friends provide care would be beneficial for everyone.
The health department did not comment on the contents of FACE NJ’s letter.
But the health department is fully aware the visiting policies are not uniformly applied, Leusner said.
“The department’s Office of Long Term Care Resiliency responds to complaints and questions from residents and their loved ones and engages with facilities to help them maintain a safe environment even in the presence of an outbreak,” she said. “If the outbreak is confined, full closures or too restrictive policies need not be employed except in situations as outlined in the U.S. Centers for Disease Control and Prevention guidance and Department of Health directives.”
The health department’s willingness to listen and improves its communications is welcome, Vukas said. But FACE NJ is hoping for much more, such as no restrictions on outdoor visits at all, she said.
Sapia said her mother’s nursing home, which she declined to identify, took good care of her mother. But she was frustrated at times when the operators said they did not know what the latest visitation policies were.
State officials “need to be very clear that communication must be transparent. Many family members have no idea that (visiting) is even allowed. It should be shared without being asked,” Sapia said.
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Susan K. Livio may be reached at slivio@njadvancemedia.com. Follow her on Twitter @SusanKLivio.
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