A dying resident wanted Adelina Ramos to sit and hold her hand during her final moments. But Ramos, a certified nursing assistant at a Rhode Island nursing home, couldn't. In other rooms, more than 20 other residents were lying in their own waste, waiting to eat or screaming for help.
"How do you choose between someone who is dying and someone who has been sitting in a soiled bed for hours?" Ramos asked Centers for Medicare and Medicaid Services Administrator Chiquita Brooks-LaSure during a virtual roundtable this month.
Ramos described this as one of her worst days on the job.
The nursing home employee's laments echo throughout the industry, voiced by workers, providers and residents alike, about problems with staffing, funding and oversight.
"All of these stakeholders would agree there are problems, but I don't think they've agreed on solutions," said David Grabowski, a Harvard Medical School professor who serves on the National Academies of Sciences, Engineering and Medicine's Committee on the Quality of Care in Nursing Homes.
For years, patient advocates have bemoaned how the nursing home industry operates. Yet only incremental changes have been achieved. Many point to industry resistance to altering the status quo or to the system's flaws being so vast that they're hard and costly to tackle.
"These are not new problems. There have been a number of long-standing problems in nursing homes," said Robyn Grant, director of public policy and advocacy for the National Consumer Voice for Quality Long-Term Care.
The COVID-19 effect
But experts hope the time for change is finally here, spurred by a brutal pandemic. More than 150,000 nursing home residents and more than 2,300 workers have died from COVID-19 since the outbreak began more than two years ago, according to CMS.
"COVID lifted the veil and allowed all of us to see the dysfunction. It's not working for anyone," Grabowski said. "COVID has been very horrible for nursing homes, for the residents who live there, their family members and for those who work in these settings. I do think it's an opportunity to rethink some of the big policy issues."
About 1.3 million people live in U.S. nursing homes, most of whom are older adults, and the nation's population continues to age. Between 2020 and 2030, the number of Americans over 65 is projected to increase by nearly 18 million, according to a Population Reference Bureau analysis of Census data. The need to devise superior ways to care for older adults is only growing more pressing.
"We have made promises for better care in nursing homes, and those promises have not been kept. Our hope is that commitment and promises for quality nursing home care that were voiced throughout the pandemic will become promises kept," Betty Ferrell, chair of the National Academies committee, wrote in the preface to its 600-page report published this month, which outlines a vision for revamping the nursing home industry.
The blue ribbon panel's report calls for fixing an "ineffective" and "unsustainable" system by transforming how nursing home care is delivered, monitored and financed. The report is the first of its kind in 35 years; the problems it highlights are not new.
The American Health Care Association and National Center for Assisted Living, which represents more than 14,000 facilities, said providers are committed to learning from the pandemic and agree more needs to be done to improve the long-term care system. But the industry can't support "unfunded mandates," the trade group stressed.
"Critics will always point to providers as an easy scapegoat, but the reality is that policymakers have failed to adequately prioritize and support the social safety net," AHCA/NCAL said in a statement. "To make real improvements, we need policymakers to prioritize investing in this chronically underfunded healthcare sector."
President Joe Biden has plans to alter nursing home care that broadly align with what the National Academies' experts recommend. Biden announced a slate of more than 20 new policies, including minimum staffing requirements and stiffer enforcement of federal safety and quality standards, during his State of the Union address in February.
The Centers for Medicare and Medicaid Services plans to get started soon by issuing regulations about staffing ratios within a year and intends to begin rolling back pandemic-related temporary waivers to quality rules in the near future.
During the discussion with workers like Ramos, Brooks-LaSure likened the current political environment to the late 2000s, when the Affordable Care Act became law in the aftermath of the Great Recession. Sweeping change is possible, Brooks-LaSure said.
"Because of the COVID-19 pandemic, there is a different level of awareness about what it means to our country when we do not have adequate healthcare, when we do not have adequate services to address a pandemic and how much we need to do to make sure we address these issues as a country," Brooks-LaSure said. "That's why there is so much focus from the president down to me on making sure we are doing everything we can."
At the same time, the pandemic walloped the nursing home industry. Facilities already operating with razor-thin margins are even more financially challenged, and worker shortages are rampant. These conditions, combined with longstanding objections to new regulations and costs, make the industry skeptical that the time is right to disrupt the long-term care sector.
The National Academies report could provide an opportunity for cooperative efforts to improve long-term care, said Lisa Sanders, director of media relations for LeadingAge, an association of not-for-profit aging services providers. "Everybody has a role to play," she said.
"There's sort of tendency to say nursing homes aren't doing their jobs," Sanders said. "But finger pointing isn't going to help anybody now."
The types of policies included in Biden's proposals and the National Academies report have been floated before, including minimum staffing requirements and greater transparency about nursing home ownership, but didn't come to fruition, Grant said.
"Frankly, that is because the nursing home industry has opposed it," Grant said. Renewed efforts may gain traction because of shifting public opinion and intensifying political attention, she said.
"For the first time, nursing homes and nursing home residents became part of the daily news," Grant said. "There's such a sense of outrage and horror about what happened to nursing home residents during the pandemic. I think it opened a lot of people's eyes to problems that have been ongoing."
To execute change, political will and collaboration among government agencies and stakeholders are crucial, said Dr. Mike Wasserman, a geriatrician and past president of the California Association of Long Term Care Medicine, a professional organization for long-term care workers.
"All of those parties need to get in the room, lock the door and not let anyone out until they come up with something everyone agrees on," Wasserman said.