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The Emotional Cost of the Nursing Home Lockdown

June 8, 2020

A few weeks ago, I spoke with my mother for the first time in two months. At 80, she resides in a nursing home in northern Colorado that has been in lockdown since early March. Since then, it has been nearly impossible to communicate with her directly. She can no longer move either arm, which means she can’t use her cellphone, and the staff at her nursing home—stretched beyond capacity, like the rest of the sector—are too overwhelmed to help her dial out.

On the phone that day, I barely recognized her—gone was the usual humor and optimism, the boisterousness I have known since childhood, her anecdotes of fellow residents, or the questions about my active life in New York. She shared with me that she had not been able to speak to my father in three weeks, and after only a few minutes, disconnected our call.

She has survived over the last few years for three reasons: 24-hour skilled nursing care, dialysis three times a week (she lives with kidney failure, heart disease, and diabetes), and daily visits from my father, who at age 85 lives within driving distance yet increasingly struggles with his eyesight and hearing. She fully understands what has happened to her nursing home and our world because of COVID-19. Like the rest of us, the shock of seeing her daily social life upended indefinitely has left her anxious and grief-stricken. But unlike many of us, she has done so for months largely without her family at her side.

Until now, the nursing home lockdown has been the best option for protecting one of the most at-risk groups in this moment; nursing home residents and workers make up one in three COVID-19 deaths nationally. (Within this population, Black and Latino residents are in even more danger, as reported by The New York Times.) But this aggressive approach has spurred another crisis: the emotional devastation of separating residents from their loved ones at a perilous time. As our country slowly lifts the shutdown, we must focus on supporting nursing homes in creating the conditions that will allow them to reopen, reuniting residents and families.

Several weeks ago, the Centers for Medicare & Medicaid Services (CMS) issued a set of nursing home guidelines that delineate these conditions. According to a May 18 memo from CMS, a nursing home could re-open in phase three when they meet several stringent, at times vague criteria: no staffing shortages, no new COVID-19 cases in the nursing home for 28 days, an adequate supply of personal protective equipment and other supplies, adequate testing for COVID-19, and access to at least one referral hospital in the area with ICU bed capacity. The guidance also transfers the responsibility for navigating COVID-19 to states, though how will nursing homes meet these goals without significant funding and more explicit guidelines, especially if new waves of the coronavirus arrive across the months ahead, as anticipated?

A new federal bill might provide the answer. The Quality Care for Nursing Home Residents and Workers During COVID-19 Act (H.R. 6698)—introduced by Rep. Jan Schakowsky (D-IL)—would bolster the nursing home sector’s response to COVID-19. If enacted, the Act would boost testing among nursing home residents and staff; promote COVID-19 training across this sector’s workforce; provide sufficient personal protective equipment (PPE) to keep workers and residents safe; and promote transparency through regular reporting of COVID-19 cases, deaths, and needs. This Act would also set up strike teams that could intervene quickly when a nursing home reports a surge in coronavirus cases—and much more, at a critical juncture in the history of nursing homes.

For those of us who work in the long-term care sector, and who have long followed its evolution and many pain points, the horrific developments over the last two months have been jarring but not surprising. The early outbreak at a Seattle, Washington nursing home that claimed dozens of lives and largely sparked the nursing home lockdown. The widespread societal disregard of older adults, as evidenced by ageist standards that would limit emergency ventilators from reaching older people on the sole basis of age, their virtual absence in mainstream telethons and the policy discourse, and the devaluing of their paid caregivers—nursing assistants (and other direct care workers) who risk their lives every day for $12 an hour yet do so largely without adequate pay, protective equipment, paid leave, or childcare. The current attention on nursing homes—which are routinely starved by the high costs of skilled care and limited Medicaid reimbursement rates—also obscures a more equitable and preferred approach by the public at large: a well-resourced home and community-based services system that would have allowed all who need these supports to weather this crisis more safely at home.

In the weeks and months ahead, Congress will continue discussing its response to COVID-19, especially as the situation nationwide evolves. It has a critical opportunity to strengthen the nursing home infrastructure, properly supporting its residents, workers, and family members who wait desperately from the outside for this lockdown to end.

It might be our only chance to see our loved ones again.

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