En español | Around 12 million Americans who are infirm, chronically ill or have a disability depend on some form of in-home care each year, according to the National Association for Home Care and Hospice (NAHC). Many are older and have underlying medical conditions, placing them in the Centers for Disease Control and Prevention's (CDC) high-risk category for severe illness or death if they contract COVID-19.
For those individuals and their loved ones or representatives, inviting help into the home at a time when the highly communicable coronavirus continues to spread can be frightening. Especially when common in-home care tasks — such as bathing, grooming and feeding — require close contact that runs afoul of social distancing guidance.
But getting up-to-date information on your in-home care can help you mitigate risks, feel confident in your choices, and lead to better care during this trying time.
"Asking questions is critical,” says AARP's Robert Stephen, vice president of health security programming, “because not only are you making sure your loved one is being properly cared for, but you're also pushing agencies, who may not be doing the right thing, to adapt. It's really what you need to do as your loved one's advocate."
Here's a list of key questions to ask your nurse, aide or agency during the pandemic, prior to welcoming them into your home. (We have other lists of questions for nursing homes and assisted living facilities.) Use this opportunity to establish some ground rules, too, advises AARP's Bill Sweeney, senior vice president of government affairs. One could be that everyone in the house must wear a mask at all times, or that the windows must remain open throughout the visit. “You'll have your own ground rules, and they'll have theirs,” says Sweeney. “Make sure everyone's clear on what's going to happen before opening the door."
Also know where to turn if your ground rules aren't followed or if your care isn't up to scratch. Most agencies, whether privately or publicly funded, will have a help line you can call to share concerns or file a complaint, says AARP's Elaine Ryan, vice president for state advocacy and strategy integration. She recommends asking for that number prior to setting up home visits.
If the agency isn't helpful, turn to your state's department of health. These agencies license and regulate home health care and investigate complaints. If you're having trouble contacting the department of health, your state's long-term care ombudsmen may be able to help.
1. What care is necessary right now?
Although the decision to use in-home care during COVID-19 is a personal one, dependent on many factors, it's worth discussing with your agency or aide whether their visits are essential right now.
For many, care is essential and refusing it is not an option, says NAHC President William A. Dombi. “Remember, the reason health care workers are going into people's homes is because those people need care,” he says. “And those needs are still there in spite of the pandemic. If they don't get the care they need, they may end up in the ER, and that's not the place for them to be right now.”
Brent Korte, chief home care officer of EvergreenHealth Home Care in Washington state, says his team is constantly assessing which in-person home visits are “clinically essential” and whether care can be provided virtually in between essential visits. “Videocalls, or in some cases even telephone calls, can be very effective,” he says. For example, his chaplain team has successfully used phone and videoconferences to provide remote spiritual care to hospice patients.
But “it's a very case-by-case situation with many considerations involved,” he says, noting that complex wound care and physical therapy after a surgery are treatments that require in-person, hands-on visits.
Everyone's health requirements are different, and the decision comes down to the individual or their representative. It's worth bringing your care providers into that conversation.
2. Do you offer telemedicine?
Many home-care agencies are connecting with clients over video, phone, email, an app, online portal or other technology to reduce person-to-person contact during COVID-19. While some common types of assistance — dressing, bathing, feeding — cannot be provided via telehealth, many home care agencies have been shifting to telemedicine where possible.
Ken Albert, president and CEO of Androscoggin Home Healthcare and Hospice in Maine, says his agency's use of telemedicine has increased by 33 percent during the pandemic. “Our clients are quickly becoming accustomed to the technology,” he says. “It's been a great adjunct, allowing us to decrease the number of in-person visits while maintaining quality care.”
It also has been beneficial in instances when individuals or families are uncomfortable seeing a provider for an in-person visit, due to a perceived risk of COVID-19 exposure or otherwise. It allows patients to receive the care they need in an environment that they are comfortable with.
But the capabilities of telemedicine vary greatly from agency to agency; While Johns Hopkins Home Care Group recently completed its first-ever in-home intravenous immune globulin infusion using video technology, other agencies may not have the resources to provide even basic video calls. Ask what's possible, and whether switching from in-home visits to telehealth will affect your level of care in any way.
Also check whether your health care coverage — be it Medicare, Medicaid or a private insurer — is covering the telehealth service. While there are extensive waivers that grant telemedicine coverage during the pandemic, there may be some exceptions.
3. Are you or others at the home care agency caring for any COVID-19 positive individuals? If so, will any of those providers or staff be assigned to me?
A May survey by the NAHC found that 63 percent of home health agencies nationwide were treating patients who had tested positive for COVID-19, says Dombi. In “hot spots” within New York and New Jersey, 83 percent of agencies were taking on COVID-19 infected patients.
Most agencies who are treating positive COVID-19 patients are, to the best of their knowledge, separating their workers into those treating positive COVID-19 patients and those who are not, says AARP's Stephen. During New York's surge in COVID-19 cases in April and May, COVID-19 positive patients experienced longer wait times for visits from in-home heath aides because most agencies were keeping their staff separate, he says.
Although this is generally what agencies are doing, “you still want to ask, to make sure,” he adds. If your carer is treating both categories of individuals, be extra thorough in asking about their infection control protocols (more on that in questions 4 and 5). Also be mindful that they may be treating a positive patient without knowing it; the incubation period for COVID-19, which is the time between becoming infected and the onset of symptoms, is on average five to six days but can be up to 14 days, according to the World Health Organization.
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4. What infection control protocols are in place?
Taking heightened infection control measures and effectively communicating them to individuals and their families should be an agency's top priority right now, says the NAHC's Dombi. “Basically, the question is: ‘How are you keeping me safe?’ “ he says. “And the answer should provide significant details, not just, ‘We follow CDC guidelines.’ “
If this information is not provided, ask if and how often staff members are being tested; if clients are being screened before visits; how often equipment is being sanitized; what disinfecting practices are being used; what social distancing measures are possible; and what quarantine protocols are in place if a staff member contracts COVID-19.
Questions can go beyond official protocols, says AARP caregiving expert Amy Goyer, to gauge a particular staff person's potential level of exposure. She recommends asking: “In what ways are you interacting in the community? Are you shopping in stores, eating in restaurants, going to friends’ houses or attending religious services or other group activities? If so, what safety precautions are you taking?”
5. Do you have enough personal protective equipment (PPE)?
A critical factor in COVID-19 infection control is PPE; it should come up in any discussion on infection control, particularly because home care agencies have experienced shortages.
"The availability of personal protective equipment seems to have improved,” says Dombi. “Has it improved enough, though, is the question,” he says. “Certainly, the supply of surgical masks, gowns, gloves have improved — N-95 masks are still on the tougher end — but the price of them all is significantly greater. You're looking at things that are 10 to 15 times the price of what it used to be, and that's created some difficulty.”
If your aide or agency doesn't have adequate levels of PPE, ask what the plan is to obtain it and what safety measures are in place in the meantime. Also check whether they have been trained in how to properly use PPE.
6. Will care still be provided if my loved one or I contract or show symptoms of COVID-19 or if we're exposed to someone with the virus?
Several legal and business factors come into play in determining whether an agency that supplies home care aides can service a positive COVID-19 client. Inadequate PPE and staffing levels may also be a factor, hindering their ability to do so.
Whether a worker legally can care for a positive COVID-19 patient is a different question than whether they will, though. “We are getting reports of staff that are not able to care for patients because they've got childcare responsibilities, or health care needs of their own. And still, there's some fear factor for the staff,” says Dombi.
"But most of the home care companies have told me that they've worked around that; that they've got staff who are willing to care for infected patients, then those who are not, and they're able to assign people accordingly,” he says. While care may still be provided by the agency, be mindful that your usual worker may not be assigned to you in this instance, due to arrangements like these.