It’s a positive sign when officials in Washington, D.C., decide to fix some of the parts of American life that are clearly broken. A good example occurred a few months back when the Biden White House issued a new set of federal guidelines designed to improve resident care in the nation’s nursing homes. “The pandemic has highlighted the tragic impact of substandard conditions at nursing homes,” the press release stated, adding ominously, “Without decisive action now, these unacceptable conditions may get worse.”

The reform package may have been well-intended, and it’s probably going to improve the lives of the 1.4 million people who live in U.S. nursing facilities. But the guidelines come with a huge and perplexing oversight. According to this analysis from Kaiser Health News, written by reporter Judith Graham, the newly-announced standards say nothing about the role of family members and friends in providing care. These “informal caregivers” play a vital part in maintaining the health of residents, yet their role seems to have been totally overlooked.

New Nursing Home Guidelines Puzzling to Experts

“When the Biden administration announced a set of proposed nursing home reforms last month, consumer advocates were both pleased and puzzled,” Graham begins.

In a sea of new reforms that advocates have asked for over many years—minimum staffing requirements, stronger regulatory oversight, and better public information about the quality of nursing homes, among them—what’s oddly absent is any statement regarding a resident’s rights to have steady contact with family members and friends.

“That’s been a painful concern during the pandemic as nursing homes have locked down, caregivers have been unable to visit loved ones, and a significant number of residents have become isolated, discouraged, or depressed,” Graham writes.

“Trail of Grief” from Barrage of COVID Deaths

In the first two years of the pandemic, more than 200,000 residents and staff in long-term care facilities died from COVID-19. “Thousands of residents died alone, leaving a trail of grief for those who couldn’t be by their side,” Graham writes.

Advocates for nursing home residents, officially known as ombudsmen, are keen to never again see the kind of far-reaching restrictions that happened during the pandemic. In their eyes, the loneliness and isolation were almost as damaging, even fatal, as the virus itself. The support of family and friends, these advocates note, is essential to the health and wellbeing of residents.

Right to Visitors Superseded by Pandemic Rules

Tony Chicotel, a nursing home reform attorney in California, is concerned about the way the federal rights of residents were degraded under the pandemic restrictions. “I worry that facilities and public health departments will feel emboldened to cut visitation off at their discretion, whenever there’s an infectious disease outbreak,” he explains, adding that he wants to see new legislation that says “even in a public health emergency, residents have a core right to support from [informal] caregivers that cannot be waived.”

In California, a new bill regarding “essential caregivers” would give residents the ability to name two informal caregivers, “one of which would have access to a facility around-the-clock without advance scheduling,” Graham writes. “Caregivers would need to comply with the same safety and infection control protocols that apply to staffers.”

And California is not alone. Similar laws have already passed in 11 states, which is a comforting sign. But on a national level, things are still moving slowly. Graham explains, “Nationally, the Essential Caregivers Act of 2021, another measure along these lines, is languishing in the House Ways and Means health subcommittee. Competing priorities, pandemic-related fatigue, and a sense that the COVID emergency ‘is behind us’ are contributing to inaction.”

Isolation from Loved Ones Leads to Decline, Death

Despite the snail’s pace of the federal government’s action on this issue, clinical studies as well as anecdotal evidence show that cutting residents off from their families is a matter of life and death. To illustrate, Graham tells the story of Elizabeth O. Stern of Connecticut, who visited her mother in the nursing home every single day until she was unable to see her for eight months during the pandemic’s restrictions. Stern was extremely involved in her mother’s care: doing laundry, washing her windows, providing personal care, and even singing her to sleep at night.

“Unable to see her family during the long pandemic-inspired lockdown, Stern’s mother became anguished, and her health deteriorated,” Graham writes. “Two and a half days before she died in November 2020, Stern was finally able to get inside the nursing home to say her final goodbyes.” This loss leaves Stern, like so many family caregivers, completely mystified as to why the Biden administration’s proposed reforms have forgotten them.

Study Shows Impact of Informal Caregivers

Recent research, including this study from the University of Pennsylvania., reveals the extent of care provided by On the research side, Stern’s story matches with the stories of so many others.  that informal caregivers provide an average of 37 hours a month of unpaid care to their aging family member. “[…] informal caregivers. They helped 91 percent of nursing home residents who needed aid with medications; 76 percent of residents who required assistance with self-care tasks such as bathing or dressing; 75 percent of residents who had problems such as getting in and out of bed or moving across a room; and 71 percent who required aid with household tasks, such as managing money, Graham explains.

In addition to the harmful effect on residents, the loss of family assistance during the pandemic placed extra burdens on already-stressed nursing home workers, adding to an acute staffing crisis. Dr. Rachel Werner, a co-author of the Pennsylvania study, told Graham, “The discussion we should be having is how to support [informal] caregivers in long-term care facilities, whether we’re in a pandemic or not, by acknowledging what they do, giving them more training, and making them part of care teams and the care planning process.”

While experts warn that family members should not be seen as a substitute for well-trained staff, their role in resident care and the extent of help they provide simply cannot be overlooked.

Nursing Home Industry is On Board

The nursing home industry seems to largely agree with advocates. Graham writes, “In a statement about the national Essential Caregivers Act, the American Health Care Association said, ‘We applaud this bill and welcome family members and friends taking an active role in the care of their loved ones.’” Such agreement is important, and we hope to see these changes implemented at a national level, and as this story develops, we will be certain to bring you updates.

However, as you can imagine, this is a topic about which Rajiv Nagaich has strong feelings.

“I’ve repeated it a thousand times,” Rajiv says: “Aging is a family affair. Any law – even it may be well-intended – that diverts all the long-term care resources toward outside professionals effectively leaves family members on the sidelines. In order to ensure their loved one gets care, the family members are left completely beholden to a core of professionals paid by the government. This is a crazy way of doing things – leaving family out of the process!”

Rajiv advocates a better idea. “Why not provide families with direct access to the social services their loved one needs,” he asks, “and make a pool of funds available for their care? That puts the family in the driver’s seat and would probably be far less expensive and inefficient that the system we have now.” Under Rajiv’s plan, if family members refuse to get involved in a loved one’s care, then state would have the power to levy a tax lien on all assets and require the family to work with a social worker with no financial interest in the process. 

Is such a plan likely to pass? Probably not, Rajiv acknowledges. But one thing is certain: the present long-term care system is seriously broken and in urgent need of an overhaul. The demographics of an aging America make this a problem that’s critical to our nation’s fiscal future.

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(originally reported at www.khn.org)