Tiffany Manning for NPR
Jean White’s mother has dementia and fla. Its moved to a memory care facility near Tampa, just as the coronavirus lockdown began in the spring of 2020. For months, the family was not allowed inside to visit.
They tried to video chat and visit from outside her bedroom window, but White said her mother, who is 87, was annoying her.
White’s mother did not understand why she could not be with her loved ones in person even if she heard familiar voices.
When the family was allowed to see him, the obstacles continued. White said any facility is closed when a resident or staff member is infected with the virus.
All the while, her mother’s memory continues to erode.
“You know it’s going to happen, but still, when it’s going to happen. And when you haven’t. .
Restrictions on visits have been relaxed in recent months, White said, but he questioned whether protecting his mother from COVID-19 was worth the long separation.
“Of course he was in anxiety, loneliness and confusion – I think I’d rather see his family,” he said.
On March 11, the Florida Legislature passed a bill that would make it easier for people like White to see the health benefits of their loved ones. Governor Ron Desantis is expected to sign it next week. At least eight states have already passed similar legislation and several more bills are under consideration.
Some laws, such as those passed in New York and Texas last year, are specified for long-term care benefits. They allow residents to nominate essential caregivers, also known as sympathetic caregivers, who are allowed to visit regardless of their health crisis. The Texans have also added protection to their constitution.
Other states, including Arkansas, North Carolina and Oklahoma, have passed similar “no patient left alone” laws that guarantee visitor access to patients at the hospital.
Hospitals and long-term care facilities set epidemic restrictions on visitors to protect patients and staff from infection. But proponents of the news law say they want to ease sanctions because the rules could hurt patients.
An Associated Press investigation found that for every two residents in long-term care who died from COVID-19, another resident died prematurely for other reasons. A report released in late 2020 blamed some of the deaths on negligence. Other deaths, listed in the death certificate as “failure to improve”, were bound up with despair.
Even in areas of the United States where the rate of covid is low, the risk of death for nursing home residents with dementia was 14% higher in 2020 than in 2019, according to a survey published in February. Inside JAMA Neurology.
Researchers point out that in addition to covid infections, factors that may contribute to increased mortality include poor access to personal 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 to close their doors to family visitors, Jacksonville, Fla. From the patient’s advocate Mary Daniel was worried about what could happen to her husband, Steve, who has Alzheimer’s.
“I promised him when he determined that I would be by his side at every step, and for 114 days I could not do that,” Daniel said.
To get back inside, Daniel took a job washing dishes at the convenience of being her husband’s helper so she could see him.
Daniel worked in the kitchen two nights a week, then moved into his room after his shift. She would help him change his pajamas and watch TV lying next to him until he fell asleep.
“That’s why I’m there, to be his wife, to hold her hand, so she feels that love,” Daniel said.
Daniel has been fighting for visitor rights at the state and federal levels ever since. He is a leader of Caregivers for Compromise, an alliance with thousands of members. He also served on a state task force that announced Florida’s decision to order long-term care benefits for families to reopen in the fall of 2020.
“We understand that Kovid kills, but we want to make sure that everyone understands separatist killing as well,” Daniel said.
When the visitation laws open doors, they include provisions for the protection of patients and staff to indicate the benefits of establishing infection-control measures that families must follow in order to enter. This could mean the need for a mask or health screening. In Florida, protocols for visitors may not be as strict as those for staff, and vaccination status may not be a factor.
Also in Florida, facilities will be able to ban visitors who do not follow the rules. That’s fine with lawyers like Daniel.
“I mean, we’re not knocking on the door here saying, ‘You can never get us out and I’ll be here as long as I want,'” he said. “We want to protect their health, we want to make sure everything is safe.”
DeSantis, who assigned Daniel to the 2020 task force, was a vocal supporter of expanding audience access.
“Covid cannot be used as an excuse to deny patients basic rights, and one of the rights to being a patient, I think, is to present your loved one,” Desantis told a news conference in February.
Balancing the pleasure of visiting with the risk of infection
In November, Medicare and Medicaid service centers instructed nursing homes to open their doors to visitors even in the event of a COVID-19 outbreak, unless they checked with a viewer to see if they had tested positive or showed signs of COVID-19.
Hospitals and supportive living facilities like nursing homes are not regulated Some healthcare industry leaders fear that new legislation for hospitals and supportive lifestyles will not provide operators with the flexibility they need to respond to the crisis.
Veronica Cato, CEO of the Florida Assisted Living Association, said: Large with some private rooms and multiple common areas; Others are single-family homes with only a few occupants.
“These operators are trying to protect not only the loved ones who want to travel, but also the loved ones who don’t want these outsiders to come. They both have residency rights,” Cato said.
Florida law outlines the various situations during which inspections must be allowed at all times. This includes if a patient dies, struggling to adapt to their new environment, or experiencing emotional distress among other causes.
Cato says it’s not always easy to define these situations.
“Is it the benefit that makes that decision, the family that makes that decision, or the residents?” He asked. “And when they are in conflict, who gets the determining factor?”
Relatives wanted more time with dead loved ones
Mary Mayhew, president of the Florida Hospitals Association, said the decision was difficult for medical centers as well.
“They are very reluctant to impose restrictions [visitor] Access, and it was originally done during this very unusual period when we had a virus – there is a virus – that we are often learning something new every day, “Meihu said.
He added that people go to the hospital because they are already sick or injured, which puts them at risk for infection.
“In this case, there is a significant risk of any patient coming into contact with Kovid,” Meheu said.
Families are vital to patient care, he said, and stressed that even during the rise and lockdown of COVID, hospitals have tried to visit relatives, especially when patients were dying.
Kevin Reset says his family needs more.
“When we saw him, I mean, he’s gone. There was no consciousness left; he was on a lot of drugs,” said Regesjut. Her father died at the age of 75 from a bacterial infection in August 2021, when Tampa hospitals were overwhelmed by sick patients in the Delta variant.
Rzeszut said he had not been able to see his father for about two weeks. Rezjut’s 11-year-old son was also present when doctors told the family to say goodbye.
“I think the worst thing for me was that my son got to see him, you know, just connected to a bunch of machines and came out of it completely, you know?” Risesjut said, his voice breaking with emotion.
He said the staff tried their best.
“The nurses and the doctors, they can see the notes all day, but they don’t know him, they haven’t spent 53 years with the man,” said Rejjut, as his mother had been. “He’ll be more attracted to minor improvements or declines. Maybe it’s a pipe dream, but it seems real.”
Rzeszut said he supports measures to give families more access to their loved ones, as long as their implementation does not add more workload to the “already overburdened” healthcare system.
Whatever he really wants, he said, more people will take Kovid seriously so that people don’t need the law to see their loved ones.
The story comes from a health reporting partnership with NPR WUSF And KHN (Kaiser Health News).