After debate over hugs, Florida task force recommends limited nursing home visits

After five months of keeping Florida’s most vulnerable elders isolated from visitors, state regulators on Wednesday recommended that Gov. Ron DeSantis allow nursing homes and assisted living facilities to start allowing socially-distanced visits from family members — but people given special designation will be allowed to hug.

It is just one piece of a two-part recommendation of the governor’s Task Force on the Safe and Limited Re-Opening of Long-Term Care Facilities, which is expected to be finalized in an executive order by the governor sometime soon.

The recommendations end the five-month ban on visitors at homes that haven’t had a new COVID case in 14 days. They also allow homes to do what they already are allowed to do but many refuse: provide exceptions to visitors designated as essential or compassionate caregivers, including in facilities that may have recent incidents of positive tests.

The rules will be optional and not required. It will be up to each facility to decide whether to allow families to visit but, if they do, the facility must adopt policies that “support the safety of all residents and visitors including appropriate training and mandatory use of masks and other infection control protections, screening, and visitor scheduling and management.”

“I think we’re all excited to see families reunited,’' said Agency for Health Care Administration Secretary Mary Mayhew on Wednesday. She promised that the governor will revise his previous executive order “very quickly” and emergency rules that will make the order permanent will also be done swiftly.

Advocates for families say the recommendations are progress but still fall short of many of their goals, which include the availability of rapid tests for staff and visitors.

The final recommendation ended an emotional series of meetings that often pitted a lone advocate for families against the state’s surgeon general and members of the elder care industry. The debate put into focus the most difficult questions over how to balance risk with quality of life: Families warned that the isolation was leading to the deterioration of their loved ones, while the health experts said they feared the loosened guidelines will lead to more deaths.

Since March, a governor’s executive order has barred visitors from nursing homes and assisted living facilities in an attempt to prevent the spread of COVID-19. Although the order allowed homes to make exceptions for certain family members to visit their relatives, most homes refused.

In the end, it was Mayhew who moved the group to a compromise.

“We got a lot of people in our nursing homes and assisted living facilities who are suffering from significant depression,’' she said, adding that the isolation was contributing to it.

But, she worried, they needed a policy that would work for the long term. “This won’t be the last virus — we don’t even know if this is the last surge.”

To hug or not hug?

The task force agreed to allow general visitation under limited conditions outdoors and indoors but only for visitors over age 18 and if they wear masks and maintain social distancing. The facilities must also demonstrate they don’t have a staff shortage, have enough personal protective equipment for staff and residents, have adequate cleaning supplies, and can demonstrate that local hospitals have capacity if COVID cases spike.

As of Wednesday, 62% of the 3,280 homes in Florida would likely qualify for visitors because they haven’t had a new case in two weeks among residents and staff, Mayhew said.

“Broader visitation is going to be an option for a lot of facilities, and certainly encouraged,’' she said.

The task force initially agreed to most of the conditions at its meeting Tuesday but then got hung up on something fundamental to family members but uncomfortable territory for the industry: whether to allow hugs.

“That’s a deal breaker for me. We have to be able to touch them,’' said Mary Daniel, the only member of the task force who doesn’t represent providers or regulators. She took a job as a dishwasher in order to see her husband of 24 years, Steve, who has Alzheimer’s disease and lives at a Jacksonville memory care center.

When the group reconvened Wednesday, Mayhew had a compromise: “A visitor may be closer than 6 feet to the resident who they are visiting if they comply with CDC PPE requirements for healthcare workers.”

But Surgeon General Scott Rivkees, Emmett Reed, executive director, Florida Health Care Association and Gail Matillo, CEO of the Florida Senior Living Association who represent the industry on the task force wouldn’t accept it.

Rivkees said that even with the precautions staff are currently taking, the coronavirus is still getting into facilities “so having more individuals closer together it really is going to increase the risk of an individual getting COVID-19 in the nursing home.”

Of the 30 states that currently allow visitors at nursing homes and ALFs, none allow direct contact with residents, he said.

Caregivers’ perspective

Daniel had organized a Facebook group, Caregivers for Compromise, and more than 8,500 families across the U.S. have joined to advocate for loved ones in elder-care centers. Ending the visiting ban is their top priority as families can demonstrate how the COVID-imposed isolation has led to debilitating and cognitive health issues for many of their loved ones.

“I certainly understand the risks, but at what point do we say the cure is worse than the disease?,’' Daniel asked. “Failure to thrive is being put on their death certificates. I only want the people who need to be in there right now.”

Mayhew agreed that ending the policy of isolation is critical to the mental health of both residents and their families, but she was struggling with finding the right balance to do it safely.

“The clock is ticking for so many families without precious time with their loved ones, and I am concerned that that it will never be 100% safe, because of either the next surge with COVID-19, or the next virus that is going to invade our long-term care facilities,’' she said. “So I’m trying to think about what can we set up for infection control structures and frameworks that are going to be sustainable.”

Rivkees remained cautious.

“We may want to compromise,’' he said. “This virus does not compromise. This virus is spread by the breath, masks do not completely eliminate this virus.”

But Daniel pushed back.

“My husband has a terminal illness, and he’s not coming out of there but I’m losing the very best time with him,’' she said. “Today is his best day, he will decline tomorrow and the day after day, the day after and I’m missing the time right now that he knows me and that he knows my love and he can feel it,’' she said. “What am I saving him from — for a year from now when he’s incontinent? I mean, I need this time today, and we’ve been very, very patient.”

She repeatedly pointed to what she considers the state’s hypocritical policy of allowing staff, including outside vendors, to care for and touch residents but not their families. Rivkees and DeSantis have asserted that staff exposure has been the primary reason the virus continues to spread in long-term care homes and, while the state has required staff to be tested since July, it’s only every two weeks.

“It’s just so difficult to understand why I, as a dishwasher, can touch my husband, but when I’m his wife, I can’t,’' Daniel said. “it doesn’t make any sense, not after six months.”

Emmett Reed, director of the Florida Health Care Association, which represents for-profit senior care centers, suggested another compromise: allow touching for only those visitors designated as essential caregivers.

Under that guideline, anyone who assists with activities of daily living, including bathing, dressing or eating is allowed to enter any facility as long as they wear a mask.

The panel agreed. Emotional caregivers would be added to the definition of essential caregivers, allowing some family members to touch and attend to their relatives, under strict conditions.

“With the emotional caregivers included, nobody’s excluded from that inner circle. I think it’s a great start,” Daniel said after the meeting.

Facilities not honoring order

So if much of this previously had been allowed, what changes? The governor’s current order “does create an exemption from the prohibition of visiting for family members,” said Molly McKinstry, AHCA assistant secretary.

But Daniel said she started her organization because many families have felt abandoned by regulators who allowed for the exception but did nothing when facilities wouldn’t use it.

“We have places right now that still aren’t honoring that AHCA order, even though they understand that they need to do it,’' Daniel said. “I appreciate the AHCA saying that you guys have been around during the whole pandemic, but I can promise you that we have all felt hopeless in not having anybody.”

Left unresolved is what will happen to testing at the facilities. For months, family members, advocates and industry leaders urged AHCA to require testing of all residents and staff, but only after infections continued to spiral out of control did the agency impose the requirement in June and required it only every two weeks.

Rivkees and Mayhew have not been vocal about the need to expand rapid testing and, like the governor, have refrained from suggesting there is a need for the expanded manufacture of rapid tests to improve the quality of life for vulnerable elders. Private industries, like the NBA, are using rapid COVID tests daily.

Both said they do not want facilities to require that visitors provide proof of a negative test.

For advocates who have been urging the state to conduct rapid testing of residents, staff and visitors for months, the guidelines fall short.

“What families envision is getting back into the residents’ rooms,” said Brian Lee, an advocate with Families for Better Care. " This protocol they’re developing does not get them there. The safest way to reopen facilities is scheduled visits, point-of-care rapid testing at the door for everyone that identifies asymptomatic carriers, donned PPEs.”

Jeff Johnson, Florida director for AARP Florida said that most of the recommendations could have been adopted months ago.

“My question is that if Secretary Mayhew says we can reopen without testing, why now versus two months ago?,” he asked. “We’ve been assuming you need to be able to do quick turn tests, which are just now coming online. If that’s not necessary, then what’s new?”

With the governor ordering the task force to address the issue, Daniel said she is optimistic that facilities that had been unwilling to allow visitors to protect residents will no longer be able to sustain their freeze-out policy.

While the rule is intended “to give facilities some leeway,’' she said, “if they blatantly are not going to comply, which is what they are doing now, we can reconvene in a week or two and make it mandatory.”

There is no indication from Mayhew, who chairs the task force, that will happen.

Lee, a former ombudsman at the Department of Elder Affairs, is also not optimistic the visitation guidelines will be revisited.

“I feel terrible for Mary, the families, and the residents, but this panel is becoming a political falderal,’' he said. “The families are not getting what they want. This is their one shot.”

The recommended guidelines

▪ Rules for facilities: Screen visitors with questions and temperature checks. They are “strongly encouraged: to provide outdoor visitation and must notify residents and recurring visitors of any changes in the visitation policy. Provide infection prevention and control training. Designate key staff to support infection control education of visitors. Allow evening and weekend visits. No resident visits if the resident is quarantined or if the resident is positive for COVID-19 or symptomatic, unless the visit is for compassionate care. Facility use of testing must be based on current CDC and FDA guidance. Visit spaces must be cleaned and disinfected between visitors and contain handwashing or sanitation stations. Maintain a visitor log for signing in and out. Referral hospitals must have capacity. Adequate PPE, cleaning and disinfecting supplies. Must have sufficient staff to support management of visitors.

▪ Rules for facilities offering essential and compassionate care visitors: Essential care before the pandemic or have asked to provide since, consult with resident or representative for concurrence. Allow resident to designate two essential care (EC) and compassionate care (CC) individuals, and allow no more than one EC or CC per visit. Facility shall set a limit on the total number of visitors allowed in the facility based on the ability of staff to safely screen and monitor visitation. Work with resident and EC/CC to define an agreeable schedule. Provide infection prevention and control training. Designate key staff to support infection control training of caregivers. Allow evening and weekend visits to accommodate work or childcare barriers. May restrict or revoke if the EC/CC fails to follow infection prevention and control requirements or other COVID-19 related rules of the facility after attempts to mitigate concerns

▪ Rules for visitors: Must be 18 or older. Must comply with CDC guidelines for PPE and social distancing. Residents can designate up to five visitors. Visits must be scheduled. Facility shall limit the number of visitors per resident to no more than two visitors per visit. Facility shall set a limit on the total number of visitors allowed in the facility based on the ability of staff to safely screen and monitor visitation. Facility shall limit the length of visits, days, hours, number of visits per week. Restrict visitation for any resident in isolation for suspected or confirmed COVID within the facility. For indoor visitors, facilities can create indoor spaces for residents in a room that is not accessible by other residents, or in the resident’s private room if the resident is bedbound and for health reasons cannot leave their room.