Jean White's mother has dementia and moved into a memory care facility near Tampa, Fla., just as coronavirus lockdowns began in the spring of 2020. For months, the family wasn't allowed to go inside to visit.
They tried video chats and visits from outside her bedroom window, but White said that just upset her mom, who is 87.
White's mother couldn't grasp why she could hear familiar voices but not be with her loved ones in person.
When the family was allowed in to see her, disruptions continued. White said the facility kept shutting down anytime a resident or staff member had the virus.
All the while, her mom's memory was deteriorating.
"You know it's going to happen, but still, when it does. And when you haven't — when you miss time that you thought you had," White said, speaking haltingly and with emotion as she talked about her mother's decline.
Restrictions on visitation have relaxed in recent months, White said, but she questions whether protecting her mom from COVID-19 was worth the lengthy separation.
"What anxiety, loneliness and confusion she must have had – I think I would have rather her seen her family," she said.
On March 11, the Florida Legislature passed a bill that will make it easier for people like White to see their loved ones in health facilities. Gov. Ron DeSantis is expected to sign it in the coming weeks. At least eight states have already passed similar laws, and several others have bills under consideration.
Some laws, like those passed last year in New York and Texas, are specific to long-term care facilities. They allow residents to designate essential caregivers, also known as compassionate caregivers, who are allowed to visit regardless of whether there is a health crisis. Texans also added protections in their constitution.
Other states including Arkansas, North Carolina and Oklahoma passed similar "No Patient Left Alone" acts that also guarantee visitor access to patients in hospitals.
Hospitals and long-term care facilities set pandemic restrictions on visitors to protect patients and staffers from infection. But supporters of these news laws say they want to ease the restrictions because the rules may have harmed patients.
An Associated Press investigation found that for every two residents in long-term care who died from COVID-19, another resident died prematurely of other causes. The report, published in late 2020, attributed some of those deaths to neglect. Other deaths, listed on death certificates as "failure to thrive," were tied to despair.
Even in regions of the U.S. with low rates of COVID, risk of death for nursing home residents with dementia was 14% higher in 2020, compared to 2019, according to a study published in February in JAMA Neurology.
The researchers pointed to factors besides COVID infection that may have contributed to the increased mortality, such as less access to in-person medical care and community support services, and "the negative effects of social isolation and loneliness."
She took a kitchen job so she could see her husband
When long-term care facilities and hospitals began closing their doors to family visitors, patient advocate Mary Daniel, from Jacksonville, Fla., was worried about what might happen to her husband, Steve, who has Alzheimer's.
"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," Daniel said.
To get back inside, Daniel took a dishwashing job at her husband's assisted living facility so she could see him.
Daniel would 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 lay beside him watching TV until he fell asleep.
"That is really why I'm there, to be his wife, to hold his hand, so he feels that love," said Daniel.
Daniel has been fighting for visitor rights at the state and federal levels ever since. She's a leader of Caregivers for Compromise, a coalition with thousands of members. She also served on a state task force that informed Florida's decision to order long-term care facilities to reopen to families in the fall of 2020.
"We understand that COVID kills, but we want to be sure everyone understands isolation kills too," Daniel said.
While the visitation laws open the doors, they also include provisions to protect patients and staff by directing facilities to establish infection-control measures that families must follow to enter. That could mean mask requirements or health screenings. In Florida, protocols for visitors cannot be more stringent than they are for staff, and vaccination status cannot be a factor.
Also in Florida, facilities will be able to ban visitors who don't follow the rules. That's fine with advocates like Daniel.
"I mean we're not here beating down the door saying, 'You can never kick us out and I'm going to be here as long as I want to,'" she said. "We want to protect their health, we want to be sure that everything is safe."
DeSantis, who appointed Daniel to the 2020 task force, was a vocal supporter of expanding visitor access.
"COVID cannot be used as an excuse to deny patients basic rights, and one of the rights of being a patient, I think, is having your loved ones present," DeSantis said at a news conference in February.
Balancing the joy of visits with the risks of infection
In November, the Centers for Medicare & Medicaid Services directed nursing homes to open their doors to visitors even amid COVID-19 outbreaks, so long as they screen visitors to see if they have tested positive or have symptoms of COVID-19.
Hospitals and assisted living facilities are not regulated in the same way as nursing homes. Some health care industry leaders fear the new laws for hospitals and assisted living won't provide operators the flexibility they need to respond to crises.
Veronica Catoe, CEO of the Florida Assisted Living Association, says she represents facilities with varying capabilities to accommodate visitation. Some are large with private rooms and multiple common areas; others are single-family homes that just have a handful of residents.
"These operators are trying to protect not only the loved one that wants a visit, but also the loved one that doesn't want these outsiders coming in. They both have resident rights," Catoe said.
Florida's legislation outlines various scenarios during which visitation must be allowed at all times. Those include if a patient is dying, struggling to transition to their new environment, or experiencing emotional distress, among other factors.
Catoe said those situations aren't always easy to define.
"Is it the facility that makes that decision, is it the family that makes that decision, or is it the resident?" she asked. "And when they're in conflict, who gets the deciding factor?"
Relatives wanted more time with a dying loved one
Mary Mayhew, president of the Florida Hospital Association, said the decision is also difficult for medical centers.
"They are extremely reluctant to place restrictions on [visitor] access, and it has largely been done during this extremely unusual time period when we have had a virus — continue to have a virus — that we are often learning something new about every day," Mayhew said.
She added that people go to hospitals because they're already sick or injured, which makes them vulnerable to infection.
"There is significant risk of any of those patients getting exposed to, in this case COVID, might be brought in by a visitor," Mayhew said.
Families are vital to patient care, she said, and stressed that even during COVID surges and lockdown, hospitals have tried to get relatives in to visit, especially when patients were dying.
Kevin Rzeszut says his family needed more.
"By the time we saw him, I mean, he was gone. There was no consciousness left; he was on so many medications," Rzeszut said. His father died at 75 from a bacterial infection in August of 2021, when Tampa hospitals were overwhelmed with patients sick with the delta variant.
Rzeszut said he couldn't visit his dad for nearly two weeks. When doctors told the family to come say their goodbyes, Rzeszut's 11-year-old son went along.
"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, you know?" said Rzeszut, his voice breaking with emotion.
He said the staff did the best they could.
"The nurses and doctors, they can look at notes all day long, but they don't know him, they haven't spent 53 years with the man" the way his mother had, Rzeszut said. "She'd be more attuned to minor improvements or degradations. Maybe that's a pipe dream, but it feels real."
Rzeszut said he supports measures to give families more access to their loved ones, so long as enforcing them doesn't add more workload to an "already overburdened" health care system.
What he really wishes, he said, is that more people would take COVID seriously so people didn't need a law to visit their loved ones.
This story comes from NPR's health reporting partnership with WUSF and KHN (Kaiser Health News).
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