One June afternoon, Susan came in from gardening to find that her husband, John, was missing.
After a frantic scan around their wooded lot, she called 911 and soon had sheriffs, firefighters, and a state police helicopter scouring nearby parklands in pursuit of this 71-year-old man. Seventeen long, terrifying hours later, a deputy found John in the park, safe and seemingly unfazed by his whereabouts.
This was not the first time he wandered. His increasing impulsivity due to advanced frontotemporal dementia, along with the physical strength he amassed from the couples’ lifelong love of outdoor adventures, contributed to Susan’s gut-wrenching decision to pursue nursing home care.
Susan eventually found an “excellent” facility where she developed relationships with staff, helped them understand John’s needs, and felt part of both his care team and community.
Then COVID-19 struck, and the visitor ban followed. While implemented to minimize the spread of infection, this government mandate also inadvertently amplified the burden borne by an already limited, tenuous pool of nursing staff. The ban eliminated an essential source of care — family caregivers. For older adults with disabling conditions, families are the primary source of emotional support.
Susan felt disconnected from John physically and emotionally. Her thoughts took her to dark places when wondering how he perceived her sudden absence.
Because of the alarming COVID-19 nursing home mortality rates, the forensic spotlight is illuminating the inadequacies that contributed to the disproportionate loss of lives in this population:
Lack of PPE. Shortage of available, trained, consistent nursing staff. Unclear policies regarding safe transitions between nursing homes and hospitals.
These factors contributed to the tragedy. The tragedy was exacerbated by the visitor ban. Many residents experienced drastic declines in function, cognition, and mood and began “failing to thrive.” Yet, the only metrics under scrutiny appear to be those related to physical safety.
Risk management is irrefutably a paramount responsibility of nursing homes. Nevertheless, the pandemic has raised ethical questions about the need for balancing priorities. Ensuring physical safety of the population and resident-centered preferences for autonomy, purpose, and social connection. Promoting quality metrics for a health care facility and those for a living community.
Susan, like many family members, never intended to surrender her role as caregiver when John entered the facility. While she largely relinquished responsibility for his physical care, she continued to provide emotional support and recreation. She also perceived her time with him as “relief” for the staff, given that John was always “on the move.”
Susan took John out for walks and car rides. With staff permission, she brought popcorn and soft drinks to John’s unit during football season, where she would join him and other residents at game time. Since recreation activities are sparse on weekends, Susan’s NFL Sundays provided welcome diversions for residents and staff.
Looking beyond the pandemic, policymakers, regulatory bodies, and health care professionals are re-examining the nursing home industry and ways to improve care. All too often, when tragedies involving vulnerable populations occur, leaders react swiftly by increasing regulations and tightening controls without a strategic lens to consider the consequences of those actions. There is an opportunity for meaningful change, and every stakeholder group has its own vision of the ideal.
As a family therapist who has supported nursing home residents and families for two decades, I share no vision but, rather, a perspective on where to begin.
First, discern the differences between nursing homes and hospitals to affirm the important ways in which the nursing home is a place residents go to live. I recently asked residents at a town hall meeting what “independence” meant to them. Two themes emerged. They asked for opportunities to use their abilities to contribute to the facility in meaningful ways. They also expressed wanting to feel “more normal” through participation in the larger community by going to ballgames and theatre and shared a wish for non-medical transportation to attend more family gatherings.
Second, look beyond what is broken to identify all that enhances the residents’ lived experiences to understand better the quality of life issues that matter most to them and their families. Rates of infection, falls and wounds may be appropriate metrics for quality of care but are woefully inadequate metrics for quality of life.
In addition to what matters, how also matters.
Consumers assess nursing home quality not only in terms of what is done but more often by how things are done and by the safety of the relationships in which they are carried out. A shift away from facility ratings focused exclusively on deficiencies toward ones that include strengths would do much to improve morale and foster creativity in quality improvement efforts. For example, welcoming caregivers such as Susan is an asset that does not appear in any quality indicator.
Next, carefully consider how regulations designed to protect often inadvertently cause hardship in this setting. For example, I have witnessed nursing home residents who had lived in a facility for over 20 years spend their last weeks of life dying alone. Why? Because the privacy “protections” in the Health Insurance Portability and Accountability Act prevent staff from sharing a resident’s condition with friends and other staff without proper consent and authorizations. This also happens when a resident is admitted to a hospital. Residents’ friends are not privy to that information. Consequently, hospitalized residents often feel alone, and their friends wonder with angst and concern if the resident will ever return. Adherence to customary practice of solely identifying next-of-kin as health care proxies prevents facilities from regarding a resident’s relationships with other residents as significant. Regulations that preclude a sense of belonging do harm.
Extensive media coverage of the emotional and death tolls that COVID-19 inflicted on nursing homes has intensified concern for preserving the humanity of an often-overlooked population. There is an opportunity to re-examine the policies and practices that shape the nursing home experience and to add quality metrics that capture the aspects of life and community that matter most to residents and their families.
Carol Podgorski is an associate professor of psychiatry.
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