New laws allow visitors to see loved ones in health facilities, even during an outbreak

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Jean White’s mother has dementia and moved into a memory care center near Tampa, Florida just as the coronavirus lockdowns began in the spring of 2020. For months, the family didn’t not allowed to enter to visit.

They tried video chats and visits from outside her bedroom window, but White said it just upset her mother, who is 87. White’s mother couldn’t understand why she could hear familiar voices without being with loved ones in person.

When the family was allowed in, the disturbances continued. White said the facility closes whenever a resident or staff member has the virus.

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

Visitation restrictions were eventually eased, White said, but she wonders if protecting her mother from covid-19 was worth the long separation. “What anxiety, loneliness and confusion she must have had – I think I would have preferred her to see her family,” she said.

Florida Governor Ron DeSantis signed a bill April 6 that will make it easier for people like White to see their loved ones in health care facilities. Prior to Florida, at least eight states had passed similar laws, and several more have bills in the works.

Some laws, like those passed last year in New York and Texas, are specific to long-term care facilities. They allow residents to nominate essential caregivers, also known as compassionate caregivers, who are allowed to visit whether or not there is a health crisis. Texans also added protections 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 in hospitals.

Hospitals and long-term care facilities are imposing pandemic restrictions on visitors to protect patients and staff from infection. But supporters of the new laws have said they want to loosen the restrictions because the rules may have harmed patients.

An Associated Press investigation found that for every two long-term care residents who died of covid-19, another resident died prematurely of other causes. The report, released in late 2020, attributed some of those deaths to negligence. Other deaths, listed on death certificates as “stunted”, were linked to despair.

Even in areas of the United States with low covid rates, the risk of death for nursing home residents with dementia was 14% higher in 2020 than in 2019, according to a study published in February in JAMA Neurology.

The researchers pointed to factors other than covid infection that may have contributed to increased mortality, such as reduced access to in-person medical care and community support services and “the negative effects of ‘social isolation and loneliness’.

A woman took a job in an establishment to be near her husband

When long-term care facilities and hospitals began closing to family visitors, patient advocate Mary Daniel of Jacksonville, Florida, worried about what might happen to her husband, Steve, who has Alzheimer’s disease. “I promised him when he was diagnosed that I would be by his side every step of the way, and for 114 days I couldn’t,” Daniel said.

To get inside, Daniel took a job washing dishes at her husband’s assisted living facility so she could see him. Daniel worked in the kitchen two nights a week and went to his room after his shift. She helped him put on his pajamas and lay next to him watching TV until he fell asleep. “That’s really why I’m here, to be his wife, to hold his hand, for him to feel that love,” Daniel said.

Since then, Daniel has fought for visitors’ rights at the state and federal levels. She leads Caregivers for Compromise, a coalition of 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 fall 2020.

“We understand covid kills, but we want to make sure everyone also understands isolation kills,” Daniel said.

Visitation laws also include provisions to protect patients and staff by directing facilities to establish infection control measures that families must follow to enter. This could mean mask requirements or health screenings. In Florida, protocols for visitors cannot be stricter than for staff members, and vaccination status cannot be a factor.

Also in Florida, facilities can ban visitors who don’t follow the rules. It’s great with defenders like Daniel. “I mean we’re not here knocking on the door saying, ‘You can never kick us out, and I’m going to stay here as long as I want,'” she said. want to make sure everything is safe.”

DeSantis, who named Daniel to the 2020 task force, was a strong supporter of expanding visitor access. “Covid cannot be used as an excuse to deny basic patient rights, and one of the rights of being a patient, I think, is to have your loved ones present, DeSantis told a conference. press in February.

Balancing the joy of visits with the risks of infection

In November, the Centers for Medicare & Medicaid Services ordered nursing homes to open their doors to visitors even amid covid-19 outbreaks, provided they screen visitors to determine if they have been tested positive or have symptoms of covid-19.

Hospitals and assisted living facilities are not regulated in the same way as retirement homes. Some healthcare industry executives worry that new laws for hospitals and assisted living facilities won’t give operators the flexibility they need to respond to crises.

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

“These operators are trying to protect not only the loved one who wants a visit, but also the loved one who doesn’t want these strangers in. They both have residency rights,” Catoe said.

Florida law outlines various scenarios where visitation must be permitted at all times. These include whether a patient is dying, struggling to transition to the new environment, or experiencing emotional distress, among other factors.

Catoe said those situations aren’t always easy to define. “Is it the establishment that makes this decision, is it the family that makes this decision or is it the resident? ” she asked. “And when they conflict, who gets the deciding factor?”

Loved ones wanted more time with a dying loved one

Mary Mayhew, president of the Florida Hospital Association, said the decision was also difficult for medical centers. “They are extremely reluctant to impose restrictions on [visitor] access, and that was largely done during this extremely unusual time when we had a virus — continue to have a virus — that we often learn something new about every day,” Mayhew said. She added that people go to hospital because they are already sick or injured, which makes them vulnerable to infections.

She said families are vital to patient care and pointed out that even during covid surges and lockdowns hospitals tried to bring in relatives, especially when patients were dying.

Kevin Rzeszut said his family needed more.

In August, when Tampa hospitals were overwhelmed with patients with the delta variant, Rzeszut’s father died of a bacterial infection at the age of 75. “By the time we saw him, I mean he was gone,” Rzeszut said. left consciousness; he was taking so many drugs.

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

He said the staff did their best. “Nurses and doctors, they can look at notes all day, but they don’t know him,” Rzeszut said. Rzeszut’s mother spent 53 years with her father, Rzeszut said, and “she would be more tuned in to minor improvements.” or damage. It may be a pipe dream, but it seems real.

Rzeszut said he supports measures to give families better access to loved ones, as long as their application does not add more workload to an “already overstretched” healthcare system. What he really wants, he said, is for more people to take covid seriously so people don’t need a law to visit loved ones.

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




This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health policy research organization not affiliated with Kaiser Permanente.

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