Published 17 May 2021
This article originally appeared in the Hastings Bioethics Forum on 19 April 2021 and is reprinted with permission from The Hastings Center
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The pandemic is not over, but light is beginning to crest the horizon. Vaccination rates, especially among older adults and their caregivers, are rising. As we begin to relax physical distancing requirements on restaurants and professional sports, it’s time to urgently reconsider the severe restrictions imposed on nursing home residents.
Before the pandemic, nursing homes offered not only health care, but also a social life — meals with friends, art classes, musical performances, holiday and birthday celebrations, religious services, and the opportunity to receive visitors. Suspension of these positive aspects of congregate living with the aim of protecting residents from infection has had dramatic, harmful secondary effects: lethargy, loss of appetite, physical deconditioning, cognitive decline, hopelessness, anxiety, depression, and social isolation. While these adverse effects are more difficult to quantify than Covid-19 infection rates and mortality, they must not be ignored.
Nursing homes have been epicenters of the pandemic. They present a constellation of factors that have created a perfect environment for Covid-19 to spread rapidly and take lives. Individuals who live in nursing homes are at high risk for serious illness and death from Covid-19, due to advanced age, dementia, and/or comorbid conditions. In the early months of the pandemic, nursing homes were recognized as serving a particularly vulnerable population. However, they were not prioritized for allocations of personal protective equipment or Covid-19 tests when both were in short supply. Infection-control measures focused on minimizing exposure risk by severely restricting residents’ contact with others. Visitation by family and friends, communal dining, group activities, and socializing with other residents in common areas were restricted or forbidden outright.
Today, PPE and Covid tests are readily available, and nursing home residents and staff have been a top priority for the Covid vaccines. More than 75% of U.S. nursing home residents and more than 50% of staff are fully vaccinated . However, the mandatory social isolation of residents remains largely in place. While federal and state authorities have begun to lift restrictions cautiously and slowly, the urgency of the situation requires swifter action.
Many nursing home residents are suffering as a result of the loss of human contact with family and one another. As social beings, connecting to others is crucial to our mental health and well-being. While social restrictions may have been justified in the early months of the pandemic, it is no longer clear that the benefit of continued restrictions outweighs the harm.
It is practically feasible and ethically sound to reinstitute activities that promote socialization on a more routine basis. While restrictions are loosening, there is urgency to moving forward at a brisker pace. People living in nursing homes are not being permitted the same level of freedom and choice as their fellow Americans. Due to spread in the community, it is commonplace for nursing homes to identify asymptomatic cases through routine testing of staff. With each positive test the nursing homes must suspend visitation for a period of time and place affected units in isolation for at least 14 days. In New York, where routine testing is conducted twice weekly, these cases arise frequently. In an excess of caution, health authorities sometimes require the facility to confine not only residents of affected units, but all residents to their rooms every time a positive case is identified.
Consider an 85-year-old nursing home resident with dementia who is fully vaccinated and asymptomatic, but is required to isolate in her room after an asymptomatic staff member tests positive. With current restrictions in place, even having been vaccinated against Covid, she is not allowed to visit a neighbor or participate in a music program with other nursing homes residents. The social isolation and the disruption of her routine is traumatic, causing increased anxiety, despair, and worsening confusion. She stops eating and drinking, facing a risk of dehydration and serious illness. These are preventable harms caused not by Covid-19, but by the regulatory response to it.
If this same woman were able to live at home, she would have few limitations after vaccination. She would be able to visit with a neighbor, perhaps go to the lobby of her building and enjoy music or conversation, and indeed see, touch, and hug her vaccinated family members. For fully-vaccinated people living in the community, the Centers for Disease Control and Prevention offers guidance for safe visitation and socialization with others. This is in stark contrast to Centers for Medicare and Medicaid Services guidance for fully-vaccinated people living in nursing homes The significant disparity in guidance for these two populations is problematic and unjust.
Balancing the demands of infection control and the need for social engagement is tricky in nursing homes, just as it is in society as a whole. The congregate living environment of a nursing home and the close personal contact with caregivers may justify some infection prevention measures that are not needed in the community. Infection control measures that restrict the liberty of residents, however, require robust ethical justification. As conditions and evidence evolve, so too must the process of ethical analysis and the calculations of harm and benefit. Policies intended to reduce the risk of harm must not cause secondary harms that, cumulatively, are disproportionate to the realized benefits of risk reduction. We submit that continuing severe restriction of visitation and social activity, including quarantine requirements for fully-vaccinated nursing home residents, is causing more harm than good. There is a middle ground between the strict isolation we see today and high-risk social contact. An ethical approach to visitation and congregate activities for people in nursing homes requires navigating that middle ground.
The focus of regulators and media has been on deaths in nursing homes. We suggest that regulators, the media, and our bioethics colleagues also focus on life in nursing homes. The continued isolation of residents is a public health emergency that policy-makers should address with passion and vigor. Prioritizing nursing home residents for vaccinations reflects the high value we as a society place on protecting life. Most nursing home residents have an anticipated limited lifespan. Let us promote a high quality of life for those that live in nursing homes by opening the doors to visitors and resuming socialization in a comprehensive and thoughtful manner. We all know that no virtual visit can replace a warm hug.
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Members of the Long-Term Care Workgroup are Nancy Berlinger, PhD (email@example.com); Jennifer B. Breznay, MD, MPH (firstname.lastname@example.org); Nancy Neveloff Dubler, LLB (email@example.com); Howard Finger, DO (firstname.lastname@example.org); Timothy W. Kirk, PhD, HEC-C (email@example.com); Karen Lipson, JD (firstname.lastname@example.org); Debjani Mukherjee, PhD, HEC-C (email@example.com); and Elizabeth G. Weingast, RN, MSN, GNP (firstname.lastname@example.org). Views represented are those of the authors as a workgroup. They do not represent views of the authors’ employers.
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