The new rules say patients can have strangers during illness: Shots

Mary Daniel took a cup -washing operation at her husband’s memorial home in Florida to see him during the first coronavirus outbreak. He has fought for tourism ever since.

Tiffany Manning of NPR

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Tiffany Manning of NPR

Mary Daniel took a cup -washing operation at her husband’s memorial home in Florida to see him during the first coronavirus outbreak. He has fought for tourism ever since.

Tiffany Manning of NPR

Jean White’s mother has dementia and has moved to a memorial home near Tampa, Fla., As coronavirus outbreaks begin in the spring of 2020. For months, the family has not been allowed to come in and visit.

They tried video chats and visits outside his bedroom window, but White said he was just mad at his mother, who was 87.

White’s mother couldn’t understand why she could hear the familiar voices but she wasn’t with her loved ones.

When the family was allowed to see him, the commotion continued. White said the building would close whenever a resident or employee became ill.

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Each time, his mother’s memory faded.

“You know it’s coming, however, when it does. And if you don’t – you leave when you think you’ve got it,” White said, speaking with breaking down and thinking that he was talking about his mother’s decline.

The visitation limit has been relaxed in recent months, White said, but he questioned whether his mother should be protected from COVID-19 for the duration of the separation.

“What a worry, loneliness and confusion – I think I want him to see his family,” she said.

On March 11, the Florida Legislature passed a bill to make it easier for people like White to see their loved ones in health clinics. Gov. Ron DeSantis is expected to sign him in the coming weeks. Nearly eight states have passed similar laws, and other bills have been considered.

Some laws, such as those passed last year in New York and Texas, are specific to long -term care homes. They let the people choose good caregivers, known as foster carers, who were allowed to visit regardless of health problems. The Texans also added barriers to their constitution.

The other states of Arkansas, North Carolina and Oklahoma have passed similar “No Patient Left Alone” initiatives to ensure that visitors go to patients in hospitals.

Hospitals and long -term care centers set sick leave limits on visitors to prevent patients and staff from getting sick. But proponents of these news laws say they want to comfort inmates because the rules may have hurt patients.

An Associated Press study found that for every two residents in long-term care who died from COVID-19, one resident had previously died of other causes. The report, published in late 2020, reported some of those deaths in resignation. The other deaths, listed on death certificates as “impossible to succeed,” were recorded with hope.

Even in areas of the U.S. with low COVID rates, the risk of death for nursing homes with dementia is 14% higher in 2020, compared to 2019, according to a study published in February. . inside JAMA Neurology.

The researchers pointed to factors other than COVID disease that could increase mortality, such as limited access to health care and community support services, and “positive outcomes. Not of isolation and loneliness. ”

She took on a kitchen job so she knew her husband

As long -term care homes and hospitals began closing their doors to family visitors, patient Mary Daniel, from Jacksonville, Fla., Worried about what was to come. her husband Steve, who has Alzheimer’s disease.

“I swore to him when it was seen that I would be by his side every step of the way, and for 114 days I couldn’t do that,” Daniel said.

To get back in, Daniel took a dishwasher to her husband’s living room so he could see her.

Daniel works in the kitchen two nights a week, and after work, goes to his room. She would help him change into his pajamas and lie on his side watching TV until he fell asleep.

“That’s why I went there, to be his wife, to hold her hand, so she feels that love,” Daniel said.

Daniel has fought for immigration rights in the state and federal government ever since. He is a leader for Caregivers for Compromise, an organization with thousands of members. He also served on a state labor team that announced Florida’s decision to order long -term care homes to reopen to families in the fall of 2020.

“We know COVID is going to die, but we want everyone to understand that death is independent,” Daniel said.

While the visitation laws are opening the doors, they have also included measures to prevent patients and staff by directing employers to establish disease management practices that benefit patients. Family to follow to join. This is how a mask or health check is required. In Florida, protocols cannot be more stringent for immigrants than for workers, and the status of medical care cannot be lost.

In Florida, too, homes can house visitors who don’t follow the rules. That’s great with fans like Daniel.

“I don’t think we’re here to knock on the door and say, ‘You can’t drive us out and I’ll come here as I please,'” he said. “We want to protect their health, we want to make sure everyone is safe.”

DeSantis, who selected Daniel for the 2020 project, is a vocal advocate for increasing visitor engagement.

“COVID cannot be used as a reason to deny patient rights, and one of the rights of the patient, I think, is the departure of your loved ones,” DeSantis said. at a news conference in February.

Balancing the joy of visits with the risks of illness

In November, the Centers for Medicare & Medicaid Services instructed nursing homes to open their doors to visitors among COVID-19 patients, while they monitor visitors to see if they have tried the quality or symptoms of COVID-19.

Hospitals and assisted living facilities are not the same as nursing homes. Some health care industry leaders fear the new rules for hospitals and assisted living will not give workers the flexibility they need to respond to crises.

Veronica Catoe, Executive Director of the Florida Assisted Living Association, said the homes have a variety of ways to visit. Some have private rooms and common areas; Others live in single -family homes.

“These workers are trying to prevent not only the loved one who wants to visit, but the loved one who doesn’t want these outsiders to come in.

Florida law sets out different scenarios when it comes to regular visits. This includes whether the patient is dying, struggling to move to a new location, or experiencing depression, among other reasons.

Catoe said those conditions are not easy to explain.

“Should it be decided by the employer, or by the family, or by the locals?” he asked. “And when they fight, who decides?”

Families wanted more time with a dying loved one

Mary Mayhew, president of the Florida Hospital Association, said the decision was difficult for health departments.

“They really want to put on the brakes [visitor] involved, and it’s done so much in this normal time that we have a disease – continuing the disease – that we often learn something new about it every day, ”Mayhew said.

He added that people go to hospitals because they are sick or injured, which makes them more vulnerable.

“There’s a big problem with those patients that can be seen, in this COVID case, they can be taken by a stranger,” Mayhew said.

Families are important to health care, he said, and he stressed that during the rise of COVID and lockouts, hospitals tried to get families to visit, especially in when patients die.

Kevin Rzeszut said his family needed it.

“By the time we saw him, I, he was gone. No one knew yet; he was on a lot of medication,” Rzeszut said. Her father died at age 75 from a bacterial infection in August of 2021, when Tampa’s hospitals were filled with delta -like illnesses.

Rzeszut said he could not visit his father for two weeks. When the doctors told the family to come and say hello, Rzeszut’s 11 -year -old son was with them.

“I think the worst thing for me is that my son saw him, you see, he was just attached to a bunch of machines and outside, like that, you know?” said Rzeszut with a crack in his voice with emotion.

He said the staff did what they could.

“Nurses and doctors, they can look at the memos all day, but they don’t see it, they haven’t spent 53 years with a husband” according to the statement. his mother, said Rzeszut. “He’s good at small improvements or degradations. Maybe that’s a pipe dream, but he really feels it.”

Rzeszut said he would support efforts to give families access to their loved ones, even though implementing them would not increase performance on an “overburdened” health care system.

What he really wanted, he said, was for more people to take COVID seriously so people don’t need the law to visit their loved ones.

This story is from NPR’s health reporting team with WUSF a KHN (Kaiser Health News).

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