Nearly 30 percent of coronavirus deaths in Florida are linked to nursing homes and assisted-living facilities. Residents of these facilities are especially vulnerable to get COVID-19, as are the staff taking care of them.
The situation is causing a lot of stress for families, and some may be wondering if the safer option is to bring their loved ones home.
With in-person visitation banned and limited information coming from the state, Floridians with family members in long-term care facilities are wrestling with decisions about how to protect their loved ones.
Lindsay Peterson, a research assistant in the University of South Florida's School of Aging Studies, encourages people to ask themselves: “Under normal circumstances, would I be able to bring my family member home and take care of them?”
"If the answer to that would be yes than they should probably do it,” she said. “If the answer to that is no, if they're thinking of this as just a temporary solution, they probably should not bring them home.”
Peterson said there's a few reasons for that. For one thing, families may lack the equipment and manpower to do all the things necessary to properly care for their loved one. That could involve assisting with basic activities like bathing and eating, but also more complicated tasks like memory care and medication management.
There's also no guarantee the facility would have room to take that resident back once things calm down.
“And one of the bigger questions is are there other family members coming and going from the household, and if that's the case then they're just as at-risk in the household as they would be in the nursing home,” Peterson said.
Peterson and her colleague Kathryn Hyer, who directs the Florida Policy Exchange Center on Aging at USF, have been studying the effects of evacuating long-term care facilities during hurricanes.
Their research into 2017's Hurricane Irma has so far found few families of nursing home residents decided to take care into their own hands, but a lot did for residents at assisted living facilities.
Hyer said after the storm, many facility managers reported those residents returned in worse condition.
"The family remarked at how difficult it was to take care of the family member,” she said. “Some of the administrators said those residents, particularly those with dementia, came back far more disoriented. There may have been difficulty with managing the medications."
Communication is key
Still, the researchers know this can be an incredibly difficult time for families. They have limited contact with their loved ones, and have to rely on video chats or visits from outside bedroom windows to stay connected. And they're not always getting the best information.
The Department of Health recently started releasing the names of elder-care facilities with confirmed cases.
But the list lacks details. For more than a week after it was published it did not include information about how many cases are at each home and whether it was a resident or a staff member that was infected. The department began doing so Monday afternoon in response to public demand for the information.
The department is still not releasing information about deaths at individual nursing homes.
Some facilities have also been removed from the list because they didn't have cases and others are missing that reportedly did.
Lindsay Peterson said transparency is essential.
“Because that's when people get angry and upset is when they think things are being hidden from them," she said.
She urges families to communicate directly with facility administrators and nursing directors. And to ask very specific questions.
“How they're handwashing, if they have enough personal protective equipment, what they're doing for social stimulation, etc.” she explained. “Not only how they're protecting the resident but also how they're trying to provide usual care, and every family member has a right to ask all of those questions.”
Peterson said another important thing families should be discussing with nursing homes, their elderly family members and possible legal representatives is what to do if the resident gets too sick to make their own decisions about care.
Do they want nursing home staff to use ventilators and other medical interventions if necessary? Do they want a “Do Not Resuscitate” order? Some families may have to re-evaluate advanced care plans, and Peterson said they should do so now before it’s potentially too late.
She said if a family member has an issue they don't feel is being addressed at the long-term care facility they should file a complaint with the state long-term care ombudsman or Agency for Health Care Administration.
Kathryn Hyer said while there are some bad actors, it's important to note that many facilities, including ones with cases of COVID-19, are doing everything they can to take care of residents. She said nurses and other staff should be commended.
"There are people working every day, very hard, and this has never been easy work," she said.
Both researchers are calling on the state to increase testing at nursing homes.
Governor Ron DeSantis has been dispatching National Guard personnel to conduct testing at dozens of facilities where cases have been found, and some homes have privately arranged to test their residents and staff.
More testing will help facilities keep residents safe and give family members more peace of mind.
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