Beverly Cigler is a Distinguished Professor Emerita of Public Policy and Administration at the Pennsylvania State University and an Academy Fellow. This blog post an excerpt of an article used in the International Journal of Public Administration. To read the entire piece, you can access the article via PDF here or via the Taylor & Francis website here.
Introduction
The US has approximately 1.4 million elderly and disabled residents–less than 0.5% of the population–living in approximately 15,700 nursing homes (NHs), including 150 that care for veterans and are operated by partnerships between the Department of Veterans Affairs (VA) and state governments. NH facilities are disproportionately affected by COVID-19. By mid-November 2020, COVID-19 deaths associated with NHs accounted for more than 40% of the US pandemic deaths nationally (Kaiser Family Foundation, 2020). Risk varies across states, but the disease often affects 50% or more of a state’s NH residents. Concentration of risk has significant implications for handling the disease. Most NHs were put in lockdown in mid-March 2020, with no visitor or communal activities permitted and residents mostly restricted to their rooms. This had adverse effects as isolation and loneliness cause anxiety, depression, and increase other mental and physical disabilities. By mid- September, the Centers for Medicare and Medicaid Services (CMS), which regulates NHs, loosened regulations and called for more “compassionate care” that allows loved ones to help care for those with worsening health.
Older adults with comorbidities, the simultaneous presence of two chronic diseases or conditions, are especially prone to severe illness or death from COVID-19. Eightyfour percent of NH residents are over age 65 and many are 85 or more, the age group at greatest risk for severe illness. Nearly half of those in VA homes are aged 85 or older, two-thirds of NH residents are women and more than a third of all residents have dementia (Fulmer et al.,
2020) that requires daily living assistance and increased staff contact. Cognitive impairments and chronic illnesses, along with congregate living through shared rooms and meals, contribute to making residents of NHs a highly vulnerable population. Close contact with each other and with staff increases vulnerability to infections and the ability to practice basic hygiene.
NHs vary widely in performance and the industry varies greatly in terms of the quality of management and clinical care. There are many poorly staffed and equipped facilities, those with staffing and supply shortages and weak safety measures, and poor emergency preparedness. All can contribute to infections and deaths even if quality and safety standards are strong and enforced.
Although the residents’ clinical status may be the key determinant of risk to COVID-19, there is uncertainty regarding what and how much other factors contribute. Worker characteristics and training; community location
of a facility and its size; race and socioeconomic characteristics; payer mix; and facility ownership may also affect risk. Historically, NHs have a history of uneven success in dealing with infections due to their design, operation, and/or funding.
It is important to acknowledge that there are differences among and between NHs and other Long Term Care (LTC) options such as assisted living. NHs are skilled nursing facilities that operate 24 hours/day and
are more regulated than other options. CMS is responsible for ensuring residents’ health and safety and enforces standards to help control and prevent the spread of disease. CMS inspects Medicare- and Medicaid-participating facilities with state agencies, such as the Pennsylvania Department of Health (DOH) to ensure compliance with national health and safety rules. CMS and the state work with Centers for Disease Control and Prevention (CDC) to provide guidance on resident safety and NHs are required to establish and maintain infection prevention and control programs that include a surveillance system to identify possible communicable diseases or infections before they spread in a facility. NHs are required to notify state or local health departments regarding residents or staff with suspected or confirmed COVID-19, residents with severe respiratory infection resulting in hospitalization or death, or three or more residents or staff with new respiratory symptoms within 72 hours of each other.
This article focuses on Pennsylvania’s pandemic experience with its NHs, not with all of its LTC facilities. A key objective is to identify changes needed to improve performance. The state has a large and aging population with 20% over age 65, about 700 NHs, and had its first NH outbreak in February 2020. By December, it ranked fifth in the percentage of its pandemic deaths from COVID-19 associated with NHs, one of several states with more than
a majority of its COVID-19 deaths being NH residents and staff.
First, the article discusses extensive limitations of existing data and provides information sources available on NHs. Next, important NH attributes are highlighted and the focus turns to the significant actions affecting Pennsylvania’s NHs between February 2020 and May 2021. A concluding section notes key changes occurring to reform the NH segment of the US public health care system.
Despite the data limitations that are reviewed, extensive information is available on Pennsylvania’s NHs before and during the pandemic, which is used for the case study research. This includes reputable news media
investigations and reports, academic journal articles, national and state legislative and executive branch documents, data tracking websites, and think tank reports. The article has both practical and scholarly aims. Shedding light on key problems associated with NHs in general that need further scrutiny can help lead to implementable recommendations to NH administrators, residents and their families, and to government regulatory
agencies and data-tracking organizations. Future research ideas stem from the material reviewed.
Data problems hampering reliable information
Unreliable data have been an obstacle to pandemic response related to NHs in Pennsylvania and nationally:
- CMS did not require NHs to report COVID-19 cases or deaths until May 8, 2020, resulting in cumulative undercounts of the disease. This contributed to NHs receiving less attention than needed early in the pandemic response.
- Facilities send reports to a CDC database, but not all report data so some facilities are omitted as are data failing quality assurance checks.
- Reporting lacks uniformity since state agencies often use different standards.
- Some CDC data are suspect due to tampering with scientific data reporting by political appointees (Diamond, 2020).
- The national data system for tracking hospital beds and COVID-19 patients, the Department of Health and Human Service’s HHS Protect, contains questionable data that diverges dramatically from data collected by other national sources and from state-supplied data (Piller, 2020). During the pandemic, the CDC stopped relying on those data, as did President-elect Biden’s Transition Team.
- A September 2020 analysis by Kaiser Health documented problems with testing data: 21 states and DC do not report all antigen test results; 15 states and DC do not count positive results from antigen tests as COVID-19 cases; two states do not require antigen results to be reported at all; and five states only require reporting of positive antigen results (Pradhan et al., 2020). Results from antigen tests are known quickly but are not highly reliable compared to tests requiring longer analysis from laboratories.
NH COVID-19 case and death tracking
Private health care organizations are often relied upon more frequently than US government data to track NH pandemic cases and deaths. The New York Times (NYT) uses confirmed reports for tracking from national, state, and local government sources, and facilities (https://nyti.ms/31.mkr1NB). These data may not match numbers reported by any one of the government sources since each reports on different portions of LTC data—NHs, assisted living facilities, memory care facilities, retirement communities and other alternative living options. Also, national and state governments often revise their data.
Beverly Cigler is a Distinguished Professor Emerita of Public Policy and Administration at the Pennsylvania State University and an Academy Fellow.