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States pass laws to guarantee rights to visit patients, even during a pandemic

AYESHA RASCOE, HOST:

Two years ago, hospitals and nursing homes banned visitors for months. As the pandemic continues, some facilities only allow visitors when COVID cases are low. A few states have now passed new laws to guarantee families a right to visit, even during a pandemic. And more states may follow suit. Stephanie Colombini of member station WUSF has this report.

STEPHANIE COLOMBINI, BYLINE: Jean White's mother has dementia. She moved her mom into a memory care facility near Tampa in early 2020, right before lockdowns began. The family tried video chats or just standing outside her window, but that upset her mom. Like many dementia patients, she couldn't grasp why she could hear familiar voices but not be with them in person. Finally, months later, the family was allowed in to see her. But White says the facility would keep shutting down any time a resident or staff member had the virus.

JEAN WHITE: What anxiety, loneliness and confusion she must have had. I think I would have rather her seen her family and taken the risk with COVID.

COLOMBINI: Restrictions on visitors helped protect residents from infection but may have harmed them in other ways. An investigation by the Associated Press found that for every two residents in long-term care who died from COVID, another resident died prematurely of other causes. The report came out in late 2020. It attributed some of those deaths to neglect. Others listed on death certificates as failure to thrive were tied to despair.

Mary Daniel of Jacksonville, Fla., is a patient advocate. When the pandemic began, she grew worried something like that would happen to her husband, Steve, who has Alzheimer's.

MARY DANIEL: I promised him when he was diagnosed that I would be by his side every step of the way. And for 114 days, I was not able to do that.

COLOMBINI: To get back inside, she decided to take a dishwasher job at her husband's assisted living facility just so she could see him during the first lockdown. She'd work in the kitchen two nights a week, then after her shift, go to his room. She'd help him change into his pajamas and then lay beside him, watching TV until he fell asleep.

DANIEL: That is really why I'm there, to be his wife, to hold his hand so he feels that love.

COLOMBINI: Daniel started pushing Florida to order long-term care facilities reopen to families that fall. She's been a champion for visitation rights ever since as leader of the group Caregivers for Compromise.

DANIEL: We understand that COVID kills, but we want to be sure that everybody understands that isolation kills, too.

COLOMBINI: At least eight states have now passed laws to allow visitation even during health emergencies. Some are specific to long-term care. Others include hospitals. To protect patients, these laws direct facilities to establish infection control measures that families must follow in order to visit. That could mean masks or health screenings. And they can ban visitors who don't follow the rules. That's fine with Daniel.

DANIEL: We want to protect their health. We want to be sure that everything is safe.

COLOMBINI: The federal government recently required nursing homes across the country to allow visitors at all times, with rare exceptions. But that doesn't apply to hospitals or assisted living. Veronica Catoe heads the Florida Assisted Living Association. She fears new state laws mandating visitation won't give facilities the flexibility they need to respond to crises.

VERONICA CATOE: These operators are trying to protect not only the loved one that wants to visit but also the loved one that doesn't want these outsiders coming in. And they both have resident rights.

COLOMBINI: Mary Mayhew is president of the Florida Hospital Association. She says patients go to hospitals because they're already sick or injured. That makes them vulnerable to infection.

MARY MAYHEW: There is significant risk of any of those patients getting exposed to, in this case, COVID, that might be brought in by a visitor.

COLOMBINI: Mayhew says families are vital to patient care. She says throughout the pandemic, hospitals have always tried to get relatives in, especially when people were dying, even during case surges and lockdowns. But for some families, that wasn't enough.

KEVIN RZESZUT: By the time we saw him, I mean, he was gone.

COLOMBINI: Kevin Rzeszut's father died from a bacterial infection in August, when Tampa hospitals were overwhelmed by the delta surge. Rzeszut couldn't visit his dad for nearly two weeks. Finally, doctors told the family to come say their goodbyes. His 11-year-old son went with him.

RZESZUT: And I think the worst part for me was that my son got to see him, you know, just hooked up to a bunch of machines and totally out of it. Like, that was it.

COLOMBINI: Rzeszut says his family continues to feel guilty that they couldn't visit his dad sooner. What he really wishes is that more people took COVID seriously so people didn't need a law to visit their loved ones.

For NPR News, I'm Stephanie Colombini in Tampa.

RASCOE: This story comes from NPR's partnership with WUSF and Kaiser Health News. Transcript provided by NPR, Copyright NPR.