“The poor aides are being forced to care for 14 people each! They’re exhausted and the residents aren’t getting the care that they need. It’s hell for all,” a weeping husband in my caregivers support group told us after visiting his wife in a nearby nursing home. In its wake, COVID has left homes understaffed because people—even those eager for work—don’t want to work there.
A daughter told a blue-ribbon committee on nursing home reform, “The pandemic has lifted the veil on what has been an invisible social ill for decades.”
What the lifted veil revealed is a broken system—broken in so many ways it can no longer be simply patched up.
But good nursing homes do exist. You have to know what to look for, and I’ll walk you through that in my next blog. And even better news is that real efforts to fix long term care have begun.
The federal government has picked up the ball. President Biden put out a Nursing Home Reform Plan in February 2022 to set higher standards for care homes and added more goals in October 2022. There is bipartisan support for change with bills beginning to appear before the House and Senate.
It would be a travesty if this didn’t have wide support. As of the end of January 2022, more than 20 percent of all those who died of COVID in the United States were nursing home residents or staff, yet only half of 1 percent of the population live in a nursing home.
Even before the nursing home reform plan was released, the COVID crisis spurred the National Academies of Science, Engineering and Medicine (NASEM) to act. (The individual academies are private, non-profit institutions that provide expert advice on urgent challenges facing the nation and the world.) A NASEM committee issued a blistering report in April 2022. It concluded that “The way the U.S. finances, delivers, and regulates care in nursing homes is ineffective, inequitable, fragmented and unsustainable.” It called for “immediate action to initiate fundamental changes.”
After issuing its report, NASEM helped form the Moving Forward Coalition to pilot-test ideas in select nursing homes and make change a reality.
What would those changes be and how would they impact residents and their families?
At the top of the list is a transformation in care. In the future, the report says, care must center on the person—on his or her needs, preferences and values, not those of the institution. No more mandatory wake-up time or bedtime. More individual choice about showering or what to have for dinner.
The NASEM committee also recommends that there be, for the first time, a federal mandatory staffing level. Currently, the rules call only for “adequate staffing.” But resident/staff ratio is one of the strongest predictors of care quality. In the absence of enough staff, residents are unattended, safety is neglected and drugs are too often used to control behavior.
The answer, of course, is more nurses and aides who are properly trained for nursing home work, are paid well and have benefits.
The NASEM committee summed it up, “The days of underpaid and undervalued caregivers working in understaffed nursing homes must end.” To which nursing home workers and residents and their families can only shout, “Amen!”
President Biden’s Nursing Home Reform Plan also emphasizes the need for penalties for poorly performing nursing homes that don’t improve and grants for better training for the nursing home workforce.
Another measure the NASEM report calls for—federal long term care insurance—would have an enormous impact on families and would truly transform the way the United States delivers and finances care.
I think of dozens of middle class families I’ve known in which a husband or wife has had to deplete their savings to pay for nursing home care until their spouse became eligible for Medicaid, and what this benefit would have meant for them.
(Medicaid is Federal money given to the states. Each state sets its own rules about how much money spouses can retain for their own expenses.)
I think of other caregivers who, for fear of going bankrupt, kept their spouse at home even though the disease had progressed, and the care she (or he) needed was now beyond the caregiver’s ability.
This reform will undoubtedly face some opposition, as most government spending measures do, but there should also be plenty of stakeholders willing to fight for it.
Both Biden’s reform plan and NASEM’s report support small-house models. An early pioneer in small-house care homes was the Green House Project. Rather than large buildings that house 100 residents, Green House builds cottages that house 10 to 12 residents.
Each cottage has a large common room for cooking, eating, playing and working. Opening off that are a private bedroom and bath for each resident. People with dementia tend to feel more oriented when they walk out of their rooms and find everything right before them, rather than plodding down a long hallway, not sure of where they are. And being with 12 people is a lot less overwhelming than being with 20 or 40 or more.
Furthermore, small houses fared much better during COVID. Nationally, they had less than half as many cases and less than a third as many deaths as other nursing homes. Two main reasons were that they had many fewer people coming and going, and those private bedrooms and baths.
The Academies’ report had other recommendations. It pointed out the shameful inadequacies of nursing home inspections and oversight. Currently, state agencies inspect nursing homes to see if they do what they’re required to do to receive Medicare and Medicaid payments. But they frequently fail to catch, correct and prevent serious problems or to investigate complaints promptly.
The Centers for Medicare and Medicaid Services relies on these flawed surveys not only to approve payments but also to rate nursing homes. As a consequence, Medicare’s own star rating system, Nursing Home Compare, is itself fundamentally flawed.
Families looking for long term care are frequently told to use those ratings as a guide to the best nursing homes, but their final scores are based on the health inspections, staffing and measures of quality related to medical conditions, like pressure sores.
As we’ve seen, the inspection measure is unreliable. Furthermore, the final ratings are not based on absolute values for what they purport to measure. They are assigned in comparison to all other nursing homes in the given state. The top 10 percent of facilities get five stars; the bottom 10 percent get one star.
A five-star-rated listing can’t be interpreted as “This is an excellent nursing home.” Rather, it dubiously claims this one is in the top 10 percent of those in the state—by medical measures only!
If you want to know how the home treats the person, rather than the patient, the Medicare ratings are mum.
As a further reform, NASEM recommends incentives for nursing homes to adopt health information technology. One aspect could be online medical charts.
Anyone with experience of nursing homes knows that communication and coordination of care between busy workers and from one shift to another are frequently lacking. Sometimes it is the observant family member who ends up relaying the latest plan to the new shift. Online medical charts could make care more efficient, residents safer and staff more productive. And families less anxious!
Wives, daughters, husbands, sons, we all feel guilty when we can”t continue to give care at home. Why haven’t we, instead, as a society felt guilt for allowing a seriously flawed nursing home system to dominate long term care in the United States for so long?
It’s time to reimagine nursing homes as places where the final years of one’s life can be lived rather than endured, where one is nurtured rather than neglected or worse. Places where people want to live and where people want to work.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
