Dr. El

As a geropsychologist and a New Yorker, I’ve been relieved to see the after-the-fact uncovering of the true number of COVID-19 deaths in nursing homes in New York last year. 

The New York data revelation is not really a revelation to anyone who worked in long-term care in New York City last spring. Or for an ambulance company. Or in a hospital admitting a crush of residents from nursing homes. This big secret was not so secret and it wasn’t limited to New York.

It was already clear from the national response last spring to the outbreak at the Life Care Center in Kirkland, WA, that any facility reporting a large number of resident deaths would be made the “fall guy” for systemic failings and the impact of a novel coronavirus. While there were certainly facilities where infection control lapses and inadequate staffing ratios contributed to the number of cases, the largest factor affecting the rate of infection in nursing homes was community prevalence.

The mainstream consumer media was filled with one-sided articles about COVID-19 in nursing homes. Reading between the lines of these stories, it was clear that the desire to avoid publicity made it harder for facilities to seek desperately needed help.

For almost a year, the New York Times has posted a record of nursing homes in order of the number of facility deaths. It’s been inaccurate because of the way the numbers were reported in New York and likely in other states, with more truthful nursing homes at the shameful top of the list. 

Throughout the country, there’s been a huge disincentive to report what was actually going on, especially early in the pandemic.

I’d like to focus on the emotional ramifications of this.

From a therapeutic standpoint, the lack of transparency made the situation much more difficult to deal with. When something terrible happens in a person’s life, there’s the terrible thing and then there’s the way the terrible thing is handled. The secrecy made it difficult for those experiencing the situation to talk about it, thus compounding the problem.

In a personal example, I recall running into a couple of other geropsychologists at an antibody testing site at the end of April 2020. We wanted to talk openly but felt constrained because of our loyalty to our facilities and our employers to keep silent, acknowledging only that things were “bad.” 

This is despite our knowledge that the American Psychological Association’s top recommendation for people experiencing grief is that they should “talk about the death of [their] loved one with friends or colleagues in order to help [them] understand what happened and remember [their] friend or family member. Avoidance can lead to isolation and will disrupt the healing process with [their] support systems.”

The pattern of secrecy extended to relationships between nursing home workers and their family members, out of concern for worrying loved ones. It came between staff members and their friends and neighbors, in order to protect the reputations of facilities. It fell between workers and the family members of residents, from the fear of lawsuits and of administrative reprisal. A veil of secrecy occurred when residents disappeared to the hospital and never came back; staff surmised what happened but were rarely informed.

For a field centered on helping people through the end of life, we’re not as good at end of life as we should be under the best of circumstances, and this was the worst of circumstances.

Having an accurate count of where residents died from COVID-19 doesn’t remove the trauma of the events or the pain of loss, but it allows family members and staff to more openly discuss and process their experiences of the pandemic. 

It begins to restore the trust lost due to finger-pointing rather than hands reaching out to help. 

Sometimes I allow myself to think about what would have happened if we’d handled things differently.

What if the losses at the Life Care Center in Kirkland, WA, had led to directing essential resources to all nursing homes? What if East Coast facilities had loudly warned others of how great everything looked just before it was truly awful? What if we’d heeded the news from Italy, or China, what if, what if, what if?

I pull myself back from these thoughts because life didn’t go like that and there’s no chance to do things over. There’s only the opportunity to improve things from here, with accurate data and open conversations to help to heal our distress and lead to concrete steps (such as this and this) to prevent similar disasters from occurring in the future. 

Eleanor Feldman Barbera, Ph.D., author of The Savvy Resident’s Guide, is an Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is a Bronze Medalist for Best Blog in the American Society of Business Publication Editors national competition andGold Medalist in the Blog-How To/Tips/Service category in their Midwest Regional competition. To contact her for speaking engagements and/or content writing, visit her at EleanorFeldmanBarbera.com.