When the Biden administration announced a set of proposed nursing home reforms last month, consumer advocates were both pleased and puzzled.
The reforms call for minimum staffing requirements, stronger regulatory oversight, and better public information about nursing home quality — measures advocates have promoted for years. Yet they don’t address residents’ rights to have contact with informal caregivers — family members and friends who provide both emotional support and practical assistance.
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.
Thousands of residents died alone, leaving a trail of grief for those who couldn’t be by their side. Altogether, more than 200,000 residents and staffers in long-term care facilities perished of COVID-19 in the first two years of the pandemic, according to an analysis by KFF.
“What we learned is that family members’ support is absolutely essential to the well-being of residents,” said Mairead Painter, Connecticut’s long-term care ombudsman. (Ombudsmen are official advocates for nursing home residents.) “We need to make sure that the far-reaching restrictions put in place never happen again.”
Although nursing home residents have a right to have visitors under federal law, this protection was “degraded” during the pandemic, said Tony Chicotel, a staff attorney for California Advocates for Nursing Home Reform. “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 explained.
What’s needed now, Chicotel suggested, is legislation stating that “even in a public health emergency, residents have a core right to support from [informal] caregivers that cannot be waived.”
A new “essential caregivers” bill in California (AB-2546) would allow residents to designate two such informal caregivers, one of which would have access to a facility around-the-clock without advance scheduling. Caregivers would need to comply with the same safety and infection control protocols that apply to staffers. Laws with a similar intent have passed in 11 states, according to the Essential Caregivers Coalition, an advocacy group formed during the pandemic.
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, said Maitely Weismann, a co-founder of the Essential Caregivers Coalition.
If sweeping nursing home changes don’t address the harm to residents when they are cut off from families, “we’re only halfway where we need to be,” she cautioned. The White House did not respond to requests for comment about whether it planned to address the issue.
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Elizabeth O. Stern, 69, of Stonington, Connecticut, was unable to see her 91-year-old mother for eight months after her mother’s nursing home shut its doors on March 10, 2020. Before the pandemic, Stern visited nearly every day with her mother, who had a stroke in 2016 and developed dementia.
“I did her laundry and cleaned and washed the windows in her room,” Stern told me. “I took care of her fingernails and much of her personal care. I’d sing 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. 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.
“So many family caregivers like me are scratching their heads and wondering why, after all the devastation we’ve suffered, are we again being overlooked in the [Biden administration’s] proposed reforms,” she said.
New research confirms the extent of assistance that family caregivers like Stern provide. Using national survey data from 2016, researchers from the University of Pennsylvania reported in a recent Health Affairs study that informal caregivers helped 91% of nursing home residents who needed aid with medications; 76% of residents who required assistance with self-care tasks such as bathing or dressing; 75% of residents who had problems such as getting in and out of bed or moving across a room; and 71% who required aid with household tasks, such as managing money. On average, this care from informal caregivers amounted to 37 hours a month.
In addition to the harmful effect on residents, the loss of this assistance during the pandemic placed extra burdens on already-stressed nursing home workers, contributing to the staffing crisis that afflicts long-term care, said Dr. Rachel Werner, co-author of the study.
“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,” Werner said.
Robyn Grant, director of public policy and advocacy at the National Consumer Voice for Quality Long-Term Care, an advocacy organization, added a note of caution. “One of the things we’re concerned about is that family members and the assistance they provide might be looked at, in some cases, as part of a solution to short-staffing in nursing homes,” she told me.
“Yes, family members can help, and we want to make sure that their access to long-term care facilities is ensured. But they can’t be seen as a substitute for staff.”
In San Francisco, that line blurred for Dr. Teresa Palmer, a geriatrician, whose 103-year-old mother took to bed in her nursing home in March 2021 and wouldn’t get up. Concerned, Palmer insisted on a “compassionate care” exception to the nursing home’s lockdown rules and was able to see her mother inside the facility for the first time in a year.
“To the staff, my mother was just an old person who was acting old. But she was down to 90 pounds from a baseline weight of 105 and her bowel functions had changed,” said Palmer, who took her mother to the hospital, where she was diagnosed with malnourishment, dehydration, and pancreatic cancer.
Palmer brought her mother home from the hospital, with hospice care, where she died 10 weeks later.
“Even in a very good nursing home such as my mother’s, they really don’t have time to make sure residents are eating enough or drinking enough or give the hands-on loving care that family members provide,” Palmer said.
As for the nursing home industry, there are signs this lesson has hit home. 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.” The statement was forwarded by Cristina Crawford, senior manager of public affairs.
Ruth Katz, senior vice president of public policy at Leading Age, another long-term care association, wrote in a statement that her group believes quality care “includes residents’ ability to maintain regular connections to and contact with family and friends” and expects new federal rules to reinforce caregivers’ efforts to support nursing home residents in emergencies in the future.
Kaiser Health News is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.
