En español | With the coronavirus infecting nursing homes across the country at an alarming rate, many families are wondering whether their loved ones would be better off at home during the COVID-19 pandemic.
Federal regulations allow a resident to leave a facility at any time. But, experts advise, it is wise to think the process through thoroughly.
"It's a really tough question for which there is no easy answer,” says Susan Wehry, chief of geriatrics at the University of New England College of Osteopathic Medicine. “There's not even a single answer."
Determine your motivation
Wehry starts by digging into why families are making this decision.
"Are you afraid that your mom is going to get COVID-19? Are you afraid that your mom is going to die before you get to see her again? Are you afraid that your husband is simply lonely, getting depressed and getting anxious?” she asks. “Because when you can get yourself to really ask what is motivating you, what is the problem you're trying to solve, then you can see whether or not there's more than one solution to the problem."
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Figure out your options
Salli Pung, the long-term care ombudsman for the state of Michigan, urges people to think through practicalities such as how a home is set up, whether someone could maneuver with a wheelchair or rolling walker, and if the bathroom is large enough, safe and accessible.
There are lots of details to consider, she says, and some things can fall through the cracks during a transition home, such as prescriptions that could run out, or trouble getting placed back in a nursing home if you change your mind.
Patricia Hunter, Washington state's long-term care ombudsman, says it important to sort through your options and come up with a game plan. Any wish to leave a facility — short or long term — starts by notifying the social work department or the nurse manager for the facility. There are state and federal laws about discharge planning and processes. Residents and family members should discuss with the facility what the terms are for leaving and returning and get everything in writing.
"If you're worried about your loved one's safety, have a Plan B in your back pocket,” Hunter says. “If you had to take your mother home, what would that look like? What would you need? Is it even feasible?"
State advocates like Pung and Hunter also look at the flip side and have families consider why staying put in a nursing home might be the best option, for the same reasons families made that choice in the first place.
An agonizing dilemma
Jonathan Evans, a geriatric medicine specialist in Charlottesville, Virginia, understands how agonizing care decisions can be.
When coronavirus first hit in the United States, he traveled to the Life Care Center of Kirkland, a Seattle-area nursing home that had 37 deaths related to the virus. He wanted to find out how families were dealing with the crisis.
He says he found people acting with courage and love in a time of great uncertainty and fear. And that's having a profound effect on how he is helping his patients and families navigate this crisis.
He tells people that “there's no wrong answer, and whatever they're doing is based on love, and you can never be wrong to love your mother or father or spouse."
So, whether a family decides to bring a loved one home or to keep him or her in a nursing home, Evans wants to validate their choice and help them come up with next steps in either scenario.
Guidelines from the CDC
Experts at the Centers for Disease Control and Prevention (CDC) agree that there is no one-size-fits-all solution.
While the CDC has advised long-term care facilities of a variety of steps they can take to protect residents and staff, it has not issued guidance or recommendations about decisions to move nursing home residents out of a facility.
"This is a personal decision that each family should make in consultation with their healthcare provider based on their unique circumstances,” CDC spokeswoman Kate Grusich says.
AARP's team of caregiving advocates say that decision also depends on the individual and the type of care they need, the level of support their family can provide, and how the facility is handling the coronavirus.
"It's not a simple yes or no because everyone's situation is very different,” says Bob Stephen, AARP's vice president of family caregiving and health programs.
Families should consider three main things, he says: “Number one is what does the resident or family member want?” The second thing is to understand what's going on in the facility, he says, and the biggest area to look at is what your loved one is going to need in terms of care and what their medical professionals recommend.
An individualized approach
Bringing a loved one home can be a complicated decision, not only because it's emotional but because it comes with other unknowns. How long will this last? Will Medicaid let you take your loved one home and then allow him or her back in a facility? Are there services available in your community right now to help you? Would professionals in a nursing home do a better job than you could at home?
For geriatric psychiatrist Wehry, thinking things through on a case-by-case basis is the only way to go.
"There are so few things in life that are black and white,” she says. “There are so few things that are either/or. It's not ‘should I stay or should I go.’ It's if they're staying, how can we make that best? If they have to go, how can I possibly make that work?"
Questions to ask:
• What are the benefits and risks of moving your loved one?
• What does your loved one want?
• What are your loved one's care needs?
• Can you provide appropriate care at home (including specialized care, meals, medication management, assistance in the bathroom and with hygiene, engaging your loved one in activities)?
• Is there still risk of COVID-19 exposure at home?
• What will you do if someone at home is infected?
• If you are worried about social isolation, can you can do virtual or window visits with your loved one in the nursing home?
• If you move your loved one home and change your mind, can they be readmitted to the care home?
• Are the reasons for moving your loved one into a long-term care facility still valid?
• Is the nursing home adequately staffed and handling coronavirus well?
• Can professionals handle the caregiving better than you could at home?