As I write this here in Minnesota, 78% of those who have died from COVID-19 have been men and women living in long-term care or assisted living facilities. As of mid-July, this is well over a thousand people (Minnesota Department of Health, “Situation Update for COVID-19,” 2020, updated daily; https://bit.ly/3gpeghZ). I have been a geriatrician for 30 years at a public safety-net hospital in a practice where people are vulnerable not only because of years of chronic illness but also because of poverty and lack of social support. I know bias in almost all its variations, but COVID-19 has reacquainted me not only with ageism but with its evil twin: complacency.
I will remember April 2020 as the month I started watching death numbers. In Minnesota, the reporting was described by two categories, private residence versus congregate living. I watched the numbers rise and realized nearly all the deaths were occurring in congregate living settings, defined as skilled nursing or assisted living facilities, or group homes with more than 10 residents. Why wasn’t anyone talking about this? Where was the plan? By May, my confusion had turned to horror as the number of deaths in long-term care settings consistently outpaced those in the greater community.
In April, a staggering disproportionate number of people were dying in congregate living settings compared with the community, even as the response to COVID-19 concentrated on inpatient, acute care. If I brought this subject up to nongeriatrician colleagues, or anyone else willing to listen, I knew I had to be prepared for this response: “We should not be surprised by these statistics since it is expected that a virus would go through one of these places like wildfire. Given the age and associated conditions of these people, we should expect a high death rate.”
When certain outcomes are accepted because of who people are or where they live, individuals, communities, and institutions display their bias. Complacency compounds this, and we fail to recognize potential, preventable harm.
In May, Minnesota instituted voluntary, although not mandated, testing of residents and facility staff in congregate settings and provided resources to accomplish it. In June, the reporting about congregate living facilities with COVID-19 cases became more transparent. Whether or not these actions contributed to our experience with the virus in Minnesota, it was a relief when the tide of deaths ebbed and fell consistently to single digits. For the first time since reporting began, this third week of July the deaths due to COVID-19 in Minnesota are lower among people from congregate living settings compared with community dwellers, and the numbers remain in the single digits.
I am accustomed to unfairness and health care disparities in my practice. But four months of COVID-19 have given me a new focus of moral outrage. What can be done about this?
First, geriatricians and others who care about health care for older people with complex illness must raise difficult questions and demand answers. This must occur outside the boundaries of the health care organizations in which many of us work, because many of these organizations have a short-sighted view. Our objective must be to create a voice loud enough to make a difference. This point was made in a recent article in the Journal of the American Medical Directors Association, which argues that professionals with expertise in the care of persons in post-acute and long-term care must be included when policy is being developed that affects these care settings (J Am Med Directors Assoc 2020;21:885–887).
In Minnesota a group of geriatricians, working through our state chapter of AMDA – The Society for Post-Acute and Long-Term Care Medicine, became aware of other states that were having a different experience, including proportionately lower numbers of deaths in congregate living facilities. We found that concrete and coordinated responses in these states included mandated testing and a prohibition on admitting COVID-19–positive patients back to a nursing facility without validation that those places could provide adequate infection control. We worked together to communicate this to our state officials, both in the Department of Health, and elected senators and representatives. We believe this directly contributed to the changes we saw in governmental policy in May and June.
Second, we must call out the lackadaisical response — at the highest level of our government— about data collection during this pandemic. Only the federal government could have created standards and collected data uniformly across states. Without information about whom COVID-19 most adversely affected, we have missed opportunities to identify the individuals at greatest risk and develop best practices. Why haven’t we even bothered to accurately record the death toll from COVID-19? We need an exhaustive examination of this inadequate response even if, and perhaps especially if, that information identifies groups who have a self-interest in creating confusion to shield themselves.
And finally, we must raise questions that create awareness of ageism within our own organizations. Many of us work in places that are pyramids of power, where those providing geriatric care are at the lowest level, obscured by layers of management that disenfranchise the hard work of taking care of people when there is no accompanying lucrative service or procedure. We need to remind these leaders that taking care of people in outpatient settings, their homes, their communities, and their facilities is as much a part of health care as running intensive care units and emergency departments.
I continue to work on the active front line of this COVID-19 pandemic. I work alongside ageism, as I have throughout my entire career. This bias hinders true problem solving when it skews the view of a situation, which may or may not be inevitable, into one of acceptance. Individuals, institutions, and governments must be held accountable for the consequences of ageism and especially complacency. The stakes have been high during the COVID-19 pandemic, and solutions were available that, once implemented, made a substantial difference. It is up to all of us to continue to find better ways to get through this and not let ageism stop us.
Dr. Meyers is an internist and geriatrician practicing in Minneapolis, MN, and a member of AMDA – The Society for Post-Acute and Long-Term Care Medicine. Her practice encompasses skilled nursing facilities, traditional outpatient clinics, and home visits in the community and assisted living facilities. This practice has continued, nearly uninterrupted, throughout the COVID-19 epidemic in Minnesota.