“I feel like it is closing in on us,” a nursing home resident shared early in the COVID pandemic. “We are staying in our homes as we were told, but what happens when your home becomes a death trap?”
As COVID-19 spread across the country and it became clear how deadly it was for residents of nursing homes, significant restrictions were put in place by federal and state governments in an attempt to stem the spread. All but essential healthcare workers were prohibited from entering facilities. Not only were families unable to visit, but long-term care Ombudsman programs, legal counsel and other advocates also were not permitted entry. State surveyors, too, were not going onsite, and were only investigating complaints in extremely limited circumstances.
For months, residents were kept in their rooms, doors closed, curtains drawn between roommates. They were unable to see their families. Most were not permitted to go outside, some not even allowed to open the windows in their room to get fresh air. Numerous residents told us they felt like inmates in a prison.
Neglect, Isolation and Trauma
Residents talked about not receiving basic care. This included examples of not having showers for months, being left in the same position for 10 to 12 hours per day, unable to reposition themselves, and having to remain in bed all day because there were not enough staff on hand to safely assist them.
Emergency waivers of certain regulations resulted in residents being discharged or transferred, often to unknown locations, without advance notice, and often without their belongings, uncertain if they would be able to return to their home.
Late last summer, during the first in-person visits in months, many family members were shocked at their loved ones’ change in appearance and condition. Changes witnessed included significant weight loss, limb contractures, pressure ulcers, dirty and unclipped nails and hair, and teeth that were brown from not being brushed.
The trauma of isolation and neglect for residents has been significant and has consequences. Many became withdrawn, depressed and some even lost the will to live. It is estimated that tens of thousands of residents died over the past year from the effects of lockdown, in addition to the more than 180,000 residents who died from COVID.
As one resident said in a recent conversation, “I feel that some of [the residents] have suffered more from some of the side effects of being locked down so tightly than [from] the coronavirus itself.”
During the first in-person visits, family members were shocked at their loved ones’ change in appearance and condition.
The impact on staff has been as substantial as well. Historically chronic and inadequate staffing became worse during the pandemic as staff became sick or quit due to concerns about their own health and safety, or needs of their families. During the pandemic, the National Consumer Voice for Quality Long-Term Care (Consumer Voice) routinely heard from residents and staff representatives about situations where one staff person would be responsible for 20, or even 30, residents on a shift.
Staff worked without adequate support or personal protective equipment. Many staff work multiple jobs to make a living wage, increasing their chances of contracting COVID and bringing it into the facilities. Without adequate benefits and paid leave, some staff came to work while sick, putting themselves and others at risk.
Care Issues in Nursing Homes Are Not New
Many of the problems seen in long-term care facilities during the pandemic have existed for decades. Inadequate staffing, including the lack of a registered nurse 24 hours a day, insufficient training and high turnover rates among staff have been areas of concern for decades. In 2020 the General Accountability Office reported that prior to the pandemic, more than 80 percent of nursing homes had infection control deficiencies, with half having persistent problems in this area.
Involuntary discharges, the top complaint reported to State Long-Term Care Ombudsman Programs for more than nine years, continued to be an issue during the pandemic. Inadequate preparation for emergency situations, poor care, neglect and the inappropriate use of antipsychotic medications are just a few of the other chronic problems spotlighted over the past year.
Despite these long-standing issues, enforcement actions holding facility managers and corporations accountable have been lacking. Most complaints, including more than 25 percent of substantiated complaints, do not result in deficiency citations. Even when deficiencies are cited, most are labelled as causing “no harm,” and meaningful penalties are infrequently imposed.
More than 30 states issued executive orders or passed legislation providing immunity from liability to long-term care providers.
During the pandemic, only infection control concerns and complaints categorized as “immediate jeopardy” received any attention from state survey agencies. Although the number of COVID cases and deaths in nursing homes were extremely high, few infection control violations were identified, and the majority were viewed as not harming residents. This lack of accountability for nursing homes was then expanded beyond the regulatory system into the civil justice system, with more than 30 states issuing executive orders or passing legislation providing immunity from liability to long-term care providers.
As we begin to emerge from the worst of the pandemic, we have an opportunity—and an obligation—to improve care and the quality of life for both the residents who have survived and for future residents. Individuals should have access to quality, affordable long-term care options in a range of settings—not just in nursing homes. We can move in that direction by expanding choices for obtaining long-term care, and this should include the option of remaining at home, supported by an expansion of Medicaid home- and community-based services.
There must be accountability for meeting standards of care, as well as transparency and accountability for the billions of public dollars funneled into the long-term care system. And we must care for those who provide care by supporting them with a living wage, benefits, adequate training, a manageable work assignment and respect and recognition—elements that will help attract individuals to this field of work, which has recruitment and retention issues.
Finally, we must take the time to evaluate what happened in nursing homes over the past year, including the factors that led to the rapid spread of COVID-19, and the adequacy and efficacy of the response. The full impact of the trauma experienced by residents is just beginning to be uncovered. Let us honor the memories of those who died by ensuring this never happens again.
Lori Smetanka, JD, is executive director of Consumer Voice, in Washington, DC.