During the best of times, leaving a senior care home after a visit with a loved one brings exquisite guilt.
It’s not only that you wonder whether a parent or grandparent will be lonely when you’re gone. You also question whether they’ll drink enough water, or if anyone checks in when they don’t show up for mid-morning stretches. When a family member has dementia, you fear that they’re not being bathed or changed, that they’re hungry, or in pain, and they have no way of telling you because it’s forgotten by the time you see them again.
Knowing that caregivers at most senior homes are overworked and underpaid, and that the industry has dealt with labor shortages for years, you go as often as you can. You help with the laundry and grooming, check to see that illnesses are being tended to, and then fret between visits.
Only now, during the absolute worst of times, none of that is possible. To mitigate the spread of Covid-19, senior care homes in North America and Europe, whether private pay retirement homes or publicly subsidized nursing homes, began banning nonessential visits in mid-March.
For individual families, the ban, however necessary, has been worrying and painful. But it now appears to advocacy groups that the cumulative effect on thousands of families has also been deadly. Banning families, they say, has contributed to high rates of fatalities and negligence inside public and private care homes—revealing how much family members have acted as both supplemental support and unofficial watchdogs in an industry that’s poorly regulated at best.
The loss of the most engaged observers
Every day, the number of deaths from Covid-19 in eldercare homes continues to climb around the globe. The US data is incomplete, but a Wall Street Journal tally of elderly facility deaths by state found that more than 10,000 residents in long-term care and nursing homes have died after becoming infected with the coronavirus. About one in five homes in Florida and in California have reported Covid-19 cases.
The situation isn’t limited to the worst-hit states like New York, where more than 1,000 seniors in care have been lost. In Colorado, for instance, the virus has claimed the lives of more than 320 people in senior facilities, a number that represents 60% of all coronavirus-related deaths in the state.
In Canada, half of the more than 1,200 deaths from coronavirus to date occurred in the country’s publicly subsidized long-term care homes. In Europe, too, nursing home deaths account for about 50% of Covid-19 fatalities.
Many factors can explain why these residences have become a kind of distributed ground zero. The highly infectious virus was little understood for many months, while family and staff brought it into senior residences. This coronavirus is also particularly lethal in older populations: Seniors in a home where residents share bathrooms, dining facilities, and often bedrooms are particularly vulnerable. And in media accounts, care workers have described their employers’ response as haphazard: Systemic failures delayed necessary tests for staff and residents, mask and gown shortages left frontline workers exposed, and administrators didn’t always separate residents who tested positive.
Once facilities instituted visitation bans, the absence of family members may have exacerbated these issues. “When these restrictions went into place about six weeks ago, it didn’t just cut off a source of social support, it cut off a crucial amount of care,” says Mike Dark, staff attorney for California Advocates for Senior Care Reform. “The other related problem is those same visitors were able to see if there were infection control problems, if their loved ones were getting ill and that was not being taken care of.”
Even state regulators in the US are no longer physically entering nursing homes for routine inspections, following directives from the US Centers for Medicare & Medicaid Services (CMS). Instead, they’re conducting their investigations over the phone, Dark explains. “People are getting sicker and sicker behind closed doors,” he says.
Families are put in a terrible position, says Dark. “Often they can see [through windows or on video calls] or hear that a loved one is getting very ill and there’s nothing they can do about it,” he adds. He is fielding calls from people who go to ground floor windows “and can see family members turning blue, getting sick through the glass and they can do nothing to help them.”
Dark’s response to such calls is unsatisfying, he says. He tells families to call the county health department to make sure they’re aware of what’s happening in the building, because they quite often have not received any reports from the facility. The health department can then follow up. Otherwise, he explains to distressed callers, there’s not much you can do.
Even before the pandemic arrived, far fewer officials were paying attention to assisted living facilities. In the US, there is no federal oversight of private pay senior homes, an industry dominated by major chains like Brookdale Senior Living, Holiday Retirement, and Life Care Services (LCS).
Instead, rules about who can safely live in one of these private buildings, minimum staffing ratios, and licensing vary wildly from state to state. Some industry advocates believe this is the way it should be. They argue that not overly regulating senior homes makes room for more dignified, less institutional care.
Stephen Golant, a gerontologist, author, and professor emeritus at University of Florida, falls into this camp. But he still sees the value in the informal regulatory role played by family members. “There’s little question that assisted living providers tend to have a more vigilant attitude toward residents who have family members who are acting as watchdogs for their loved ones,” he says.
“Unfortunately that whole role of the family member has now largely disappeared,” he says. “One of the things that this epidemic has done, unfortunately, is eliminated that layer of unofficial regulatory oversight.”
Dark believes the current scenario in senior care is enabling “horrific incidents,” like one that recently played out in Andover, New Jersey. At a long-term rehabilitation home in the city, more than 60 seniors have died over the past few months—about half as a result of a coronavirus outbreak. An anonymous tip led officials to a staff-built makeshift morgue, a shed holding 17 bodies. That kind of thing is “happening now across the country—it’s just largely invisible,” Dark says.
A lack of transparency and connection
Some care homes have managed Covid-19 cases without serious issues, by monitoring their residents’ vital signs and acting quickly when they spotted a problem, even informing residents and family of case status changes through regular emails. That has given families some peace of mind, or the opportunity to pull family members from institutional settings if they’re able to tend to a loved one’s care needs, at least temporarily, in their private home. (To be sure, a great number of families don’t have the option of removing a family member from a dangerous setting, with or without fair warning. Those who live in nursing homes and memory care facilities are there because they need specialized care, as Dark notes, whether they have a severe illness like COPD, physical impairments, or cognitive or severe behavioral issues.)
Other families have been waiting for information that would guide such a decision, but learning too late that an outbreak has infected a home. “I can’t tell you how many times I’ve gotten calls from families who are reading for the first time in data dumps, like the one California department of health made [recently] of facilities with Covid, hearing for the first time from those lists that their loved ones are in facilities with contagious patients or health care workers,” says Dark.
Communication breakdowns have been reported in dozens of personal stories. According to Dark, “many facilities are deliberately not testing residents for a simple reason: They don’t want to have to report the illness in their facilities and they are for-profit businesses, and Covid is very bad for business.”
On April 20, CMS finally ordered nursing homes to report every case of Covid-19 to residents and families within 12 hours of a diagnosis, and to report any cluster of three cases of respiratory illnesses, even when confirming Covid with testing wasn’t possible. For several weeks before that, however, the data was self-reported and not tracked by any federal agency.
Kristine Sundberg, executive director of Elder Voice, an advocacy group in Minnesota, tells Quartz that with the current scenario, “the deck just couldn’t be more stacked against the resident.” With family not able to provide oversight and extra support in personal care, it’s not only the virus that could lead to severe problems or death. “We’re hearing reports of malnourishment and dehydration, not out of disregard, but because the caregivers are being stretched beyond capacity,” she says. Staff members are burning out.
Sundberg is deeply concerned about the impact of social isolation inside the homes, too, which can worsen cognitive decline in dementia patients. People with cognitive impairment can’t always remember why the visits have stopped. “Many of them are crying to their families, Was it something I did? What did I do wrong? Why can’t you come and see me?” says Sundberg. The psychological toll of these missed family visits may never be quantified.
It’s time to start thinking about long-term solutions
Care providers need to shift the way they’re thinking about managing the virus, says Dark; more than a month into the visitation bans, it’s time to think in terms of months and years, not weeks.
“We know now based on the data that we see, which is an undercount, that the virus is in most nursing homes at this point, so it’s too late to keep the virus out of these homes,” Dark argues. That’s why he believes it’s time to relax the family visits ban. The visits have to be restarted carefully for everyone’s protection, he proposes, though they should be limited in scope. Inspectors should also be allowed back inside the buildings, he insists. In both cases, the decision to allow in-person visits would require careful consideration and facilities would need to adhere to social distancing guidelines, he acknowledges. The care homes would need to guarantee sufficient staffing and personal protective equipment to keep everyone safe.
Indeed, some residences have begun opening clean rooms that are disinfected regularly and keep a pane of glass between visitors and residents, according to Senior Housing News editor Tim Mullaney. But millions of families are still waiting in limbo, wondering how to help. For these people, advocates advise taking the following steps:
- Develop a constructive relationship with the staff. “Try getting them to communicate with you regularly, give you actual information on how your loved one is doing,” says Sundberg. This would be even more important in a home with a history of violations or accused of past cover-ups.
- Contact other families to form a consumer group. Families need to understand that they’re not alone, says Dark. “Every resident in one of those facilities has family in the same terrible boat that they are in and they can reach out to one another, not just for moral support but to exchange information.” If families can band together, they can also negotiate as a group, he says, and demand weekly or even daily conference calls for updates on conditions inside a home. If you do not have contact info for other families tied to a home, try asking your state ombudsman for long-term care to help make those connections.
- Put in cameras. Elder Voice has long advocated for installing video cameras in care homes. Now, says Sundberg, families have the option of placing a video calling device in individual rooms. If possible, consider sending your loved one an Amazon Echo Show, or a Facebook Portal, or a similar product for making hassle-free video calls. (Consider setting up the machine in your own home first.)
- Use the phone. Family members “should not give up on other means of trying to communicate with their loved ones,” Dark advises. Some residents have dementia or arthritis, which can make telephone use difficult, “but if they can use a phone, just speaking to a loved one is so important both to the resident and as a way to collect information,” he adds. “You can find out on a phone call whether they’ve been fed, whether staff is coming in, and whether Covid infection is in or spreading in a facility.”
- Call an ombudsman or local health authority with complaints. When you can’t get make progress, find a way to file a formal complaint. (In the US, find your state Long-Term Care ombudsman and citizen advocacy groups here.)
- Consider social media. Although you’ll find some reviews of assisted living and nursing homes online, consumers have yet to make the most of Facebook, Yelp, or Google reviews to praise or air grievances about providers, as Quartz has previously reported. Covid-19 may be the opportunity to change that. Dark recommends turning to social media to share information and find solace, noting that informal networks have become a key source of data for officials trying to track outbreaks.