Just as the coronavirus lockdown began in the spring of 2020, Jean White’s mother had dementia and moved into a memory care facility near Tampa, Florida. For months, the family was not allowed in to visit.

They tried video chatting and visiting from her bedroom window, but White said it upset her 87-year-old mum. White’s mom couldn’t understand why she could hear the familiar voice but couldn’t be with her loved ones in person.

When the family was allowed in, the chaos continued. White said the facility will remain closed whenever a resident or staff member contracts the virus.

All the while, her mother’s memory was deteriorating.

White said visitation restrictions were eventually eased, but she questioned whether protecting her mother from COVID-19 was worth the long-term separation. “How anxious and lonely and confused she must be – I think I’d rather she see her family,” she said.

Florida Gov. Ron DeSantis signed a bill April 6 that would make it easier for people like White to see loved ones in health care settings. At least eight states have passed similar laws before Florida, and several others are considering bills.

Some laws, like those passed last year in New York and Texas, specifically target long-term care facilities. They allow residents to designate essential caregivers, also known as compassionate caregivers, who can visit regardless of whether there is a health crisis. Texans also added protections to their constitution.

Other states — including Arkansas, North Carolina and Oklahoma — have passed similar “leave patients alone” laws, guaranteeing visitors access to hospital patients.

Hospitals and long-term care facilities have imposed epidemic restrictions on visitors to protect patients and staff from infection. But supporters of the new laws say they want restrictions to be eased because the rules could harm patients.

For every two long-term care residents who have died from COVID-19, another resident died prematurely from another cause, an Associated Press survey found. The report, released in late 2020, attributed some of those deaths to neglect. Other deaths, listed on death certificates as “failed to thrive”, were associated with despair.

Nursing home residents with dementia have a 14% higher risk of death in 2020 than in 2019, even in areas of the U.S. with low COVID rates, according to a study published in February in JAMA Neurology .

The researchers pointed to factors other than COVID infection that could lead to increased mortality, such as reduced access to in-person medical care and community support services, as well as “the negative effects of social isolation and loneliness.”

Woman gets a job in facility to get close to her husband

When long-term care facilities and hospitals began closing their doors to home visitors, Jacksonville, Florida-based patient advocate Mary Daniel was concerned about what might happen to her husband, Steve, who has Alzheimer’s disease. “When he was diagnosed, I assured him that I would be there for him every step of the way, but I couldn’t do that for 114 days,” Daniel said.

To get back inside, Daniel took a job washing dishes at her husband’s assisted living facility so she could see him. Daniel works in the kitchen two nights a week, returning to his room after get off work. She helped him change into his pajamas and lay beside him watching TV until he fell asleep. “That’s why I was there, being his wife, holding his hand and making him feel that love,” Daniel said.

Since then, Daniel has been fighting for visitor rights at the state and federal levels. She is the leader of Caregivers for Compromise, a coalition with thousands of members. She also served on a state task force that informed Florida of its decision to order long-term care facilities to reopen to families in the fall of 2020.

“We understand that COVID can lead to death, but we want to make sure everyone understands that quarantine can lead to death,” Daniel said.

The Visitation Act also includes provisions to protect patients and staff by instructing facilities to establish infection control measures that households must follow. This could mean mask requirements or health checks. In Florida, rules for visitors cannot be stricter than those for workers, and vaccination status is not a factor.

Also in Florida, facilities can ban visitors who don’t follow the rules. For advocates like Daniel, that’s fine. “I mean we’re not here to knock on the door and say, ‘You can never throw us out, I’ll be here as long as I want to,'” she said. “We want to make sure everything is safe.”

DeSantis, who appointed Daniel to the 2020 task force, is a staunch proponent of expanding visitor access. “COVID can’t be used as an excuse to deny a patient your basic rights, and I think one of your rights as a patient is to have your loved ones present,” DeSantis said at a news conference in February.

Balancing the pleasure of visiting with the risk of infection

In November, the Centers for Medicare and Medicaid Services directed nursing homes to open their doors to visitors even during a COVID-19 outbreak, as long as they screen visitors to determine if they test positive or have COVID-19 symptoms.

Hospitals and assisted living facilities are regulated differently than nursing homes. Some healthcare industry leaders worry that new laws targeting hospitals and assisted living facilities won’t give operators the flexibility they need to respond to the crisis.

Veronica Catoe, CEO of the Florida Assisted Living Association, represents facilities with varying abilities to host visits. Some are large, with private rooms and multiple common areas; others are single-family homes with only a few residents.

“These operators are trying to protect not only relatives who want to visit, but also relatives who don’t want these outsiders in. They all have resident rights,” Cato said.

Florida law outlines various situations in which visitation must be permitted at all times. These include factors such as whether the patient is dying, has difficulty transitioning to a new environment, or is experiencing emotional distress.

Those situations aren’t always easy to define, Catoe said. “Is the facility making the decision, the family making the decision, or the residents making the decision?” she asked. “When they conflict, who is the deciding factor?”

Relatives want more time with dying loved ones

The decision was also difficult for the medical center, said Mary Mayhew, president of the Florida Hospital Association. “They are very reluctant to [visitor] Visits, and mostly done during this extremely unusual time when we’ve had the virus — and continue to have it — and we’re often learning something new every day,” Mayhew said. She added that people going to Hospitals because they are already sick or injured, which makes them vulnerable to infection.

She said families were critical to patient care, stressing that even during the COVID surge and lockdown, hospitals were trying to get relatives to visit, especially when patients were dying.

Kevin Rzeszut says his family needs more.

In August, Rzeszut’s father died of a bacterial infection at the age of 75 when the Tampa hospital was overwhelmed with patients with the delta variant. “When we saw him, I mean, he’s gone,” Rzeszut said. “Not conscious anymore; he was on a lot of drugs.”

He said he was unable to visit his father for nearly two weeks.

He said the staff had done their best. “Nurses and doctors, they can read notes all day, but they don’t know him,” Rzeszut said. Rzeszut’s mother, who spent 53 years with his father, said, “She would be more comfortable with small improvements or regressions. Maybe it was a pipe dream, but it felt real.”

Rzeszut said he supports measures to bring families more access to loved ones, as long as they don’t add more workload to an “already overburdened” health care system. What he really hopes, he said, is that more people will take COVID seriously so that people don’t need laws to visit their loved ones.

This story is part of a partnership that includes NPR, WUSFand KHN.

KHN (Kaiser Health News) is a national newsroom that provides in-depth news coverage on health issues.Along with policy analysis and polling, KHN is one of the top three operating programs in the U.S. KFC (Kaiser Family Foundation). KFF is a donating non-profit organization that provides information on health issues to the state.