2

Evolution and Landscape of Nursing Home Care in the United States

The landscape of nursing home care has evolved significantly over the past few decades. When the Institute of Medicine (IOM) released Improving the Quality of Care in Nursing Homes in 1986, the contexts for policy, financing, program, research, and quality were vastly different. For example, the capacity to measure quality in long-term care settings was quite limited. Assisted living facilities did not exist, continuing care retirement communities were just being introduced, and home and community-based services were newly developed features of long-term services and supports. Personal computers were gradually coming on the market, electronic health records were in their infancy, and the Internet did not yet exist on a broad scale. This chapter documents the history, evolution, and current landscape of nursing home care in the United States and sets the stage for the report’s subsequent chapters, which provide the evidence base for the committee’s recommendations for delivering high-quality nursing home care.

BRIEF HISTORY OF NURSING HOMES

Historically, families were responsible for the majority of care for older adults or people with disabilities. Dating back to medieval times, poorhouses (also known as “almshouses”) provided care in congregate settings for individuals with disabilities, orphans, and older adults (Ogden and Adams, 2019). Poorhouses were created based on principles of hospitality and shelter for the poor and individuals experiencing homelessness, but they soon became the only option for widows, orphans, older adults, and poor people with mental illnesses, physical ailments, such as epilepsy

or blindness, and infectious diseases, such as tuberculosis (Gillick, 2018; Watson, 2012). Such poorhouses were known for nonexistent safety and sanitation standards and poor-quality care that was not customized to an individual’s needs. Stigmatization of public assistance and of the populations of poorhouses perpetuated these harsh conditions and served as a barrier to improving care.

The first steps to improving care for older adults were taken with efforts in the early twentieth century to distinguish among the various populations residing within the poorhouses. Some individuals were transitioned out of poorhouses into state-sponsored, specialized institutions and other acute care facilities (Gillick, 2018; Watson, 2012). Despite such efforts, many older adults had no choice but to remain in poorhouses (Wagner, 2005).

The watershed moment for modern-day nursing home care in the United States was the passage of the Social Security Act in 1935, which prohibited providing federal assistance to residents of poorhouses (IOM, 1986a; Watson, 2012). With this ban, older adults were forced to seek long-term care in private institutions. However, amendments to the act in 1950 allowed payment for care in licensed public institutions, which led to a rapid growth of the current system of nursing homes (both public and private). As a result, “[by] shutting the almshouse door, policymakers gave birth to the modern nursing home industry” (FATE, 2020).

The demographics of residents in nursing homes have evolved over time, as has the proportion of the U.S. population seeking care in nursing homes. Today, alternative long-term care settings exist, and nursing home residents’ level of acuity and case mix have shifted due to the availability of post-acute care, palliative care, and hospice options. While older adults are increasingly seeking care in alternate long-term care settings, such as assisted living facilities and at home, the number of short stays in nursing homes has also increased significantly (Yurkofsky and Ouslander, 2021a). As a result, nursing homes are generally admitting residents with higher acuity and nursing needs (Fry et al., 2018) and need to adapt to continue delivering high-quality care. Changes in the availability of care and disparities in access to care services are discussed below and in Chapter 4. Moreover, advances in health information technology (HIT) such as the development of electronic health records and health information exchanges, have transformed the way care is delivered. As of 2016, nearly 15,600 U.S. nursing homes containing 1.7 million beds cared for over 1.3 million residents (CDC, 2020a).

Care delivery in nursing homes has long mirrored an acute care model with a medical focus. The reconfiguration of hospitals after World War II to include rehabilitative care and extended recuperative care placed more of a formal medical focus on the role of nursing homes (IOM, 1986b). The 1946

Hospital Survey and Construction Act,¹ also known as the “Hill-Burton Act,” formulated and financed the construction and staffing patterns of health care facilities, further transforming nursing homes into medical settings. The demand for nursing home care grew quickly—because of both an increase in the number of individuals who needed it and the expansion of coverage for care in this setting by Medicare and Medicaid. As a result, the industry embraced larger facilities with more beds and chain ownership (IOM, 1986b).

Over time, because nursing homes are also a place of residence, many stakeholders began to recognize the need to balance the delivery of clinical care with quality of life in order to make them feel more like homes. The culture change movement in nursing homes, which dates back to the 1980s, strives to fundamentally alter beliefs and practices among all stakeholders, including residents, staff, and communities, away from a medicalized, institutionalized model toward a person-centered care model (Koren, 2010). Resident choice is a core value of this movement, with an overarching goal of enhancing both quality of life and quality of care. (See Chapter 4 for further discussion about culture change in nursing homes.)

Most recently, the need for a more balanced approach between clinical care and ensuring quality of life in a home-like setting became even more evident by the catastrophic impact the COVID-19 pandemic had on nursing home care, residents, and staff. The scope of that impact became apparent early in the pandemic, generating widespread media attention and significant public alarm. The virus that causes COVID-19 (SARS-CoV-2) is particularly dangerous for older adults with underlying health issues. Thus, nursing home residents suffered disproportionately high rates of cases, hospitalizations, and deaths relative to the general population. The consequences of COVID-19 and efforts to address these are discussed throughout the report.

CURRENT NURSING HOME POPULATION

Over 1.3 million people in the United States live in nursing homes (CDC, 2020a). The demographic characteristics of this population vary greatly, as discussed below.

Age

The majority (83.5 percent) of nursing home residents are 65 and older. More than one-third (38.6 percent) are 85 and older (Harris-Kojetin et al., 2019) (see Figure 2-1).

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¹ Hospital Survey and Construction Act of 1946, Public Law 79-725, 79th Cong., 2nd Sess. (August 13, 1946).

Residents under 65 are the most rapidly growing age group in nursing homes, despite the Healthy People 2010 and 2020 goals of shifting care of children and young adults out of nursing homes and into home- and community-based settings (Jin and Agrawal, 2017). Despite the increasing numbers of younger residents, very little is known about them (Shieu et al., 2021). The limited data available rarely distinguish by age group under 65, and most of it is not up to date. For example, a 2009 study of nursing home residents revealed that younger residents are often male, single, and with low levels of education and typically admitted from acute, psychiatric, or rehabilitation hospitals (Persson and Ostwald, 2009). In 2012, the prevalence of residents 30 years old or younger in nursing homes was approximately 5.5 out of 100,000 (Jin and Agrawal, 2017). New Jersey had the highest prevalence, at 14 out of 100,000 (Jin and Agrawal, 2017). A study found that between 2000 and 2017, the percentage of the nursing home population younger than 65 increased by nearly 6 percent and the average age fell by over 2 years (from 81.1 to 78.8) (Laws et al., 2021).

Both older and younger nursing home residents value autonomy, identity, socialization, and privacy. Younger residents in particular identify age-appropriate activities and environments, freedom and expression, and opportunities to interact with peers as important components of their quality of life (Muenchberger et al., 2012; Shieu et al., 2021).

Medicaid covers the cost of nursing home care for a large majority of younger nursing home residents (Miller, 2011). State Medicaid policies and programs vary widely, however, which may result in unequal nursing home use by younger residents from state to state. The expansion of Medicaid eligibility (as a result of the Affordable Care Act²) facilitated access to postacute nursing home care for individuals under age 65 (Ritter et al., 2021).

The limited data available indicate that younger adult nursing home residents typically have a higher prevalence of psychiatric conditions, including anxiety, depression, bipolar disorder, and schizophrenia, than older adults (Miller et al., 2012). Middle-aged adults (31–64 years old) commonly present to nursing homes with chronic conditions (e.g., diabetes, chronic obstructive pulmonary disease, asthma, renal failure, or circulatory/heart conditions). From 2000 to 2008, the proportion of Black and Latinx middle-aged residents increased. Black middle-aged residents were also overrepresented compared with their proportion in the general population (Miller et al., 2012).

Gender Identity and Sexual Orientation

A significant lack of evidence about the lesbian, gay, bisexual, transgender, queer or questioning, and others (LGBTQ+) population in nursing homes is due, in part, to the overall lack of data on the LGBTQ+ population (Choi and Meyer, 2016; Fredriksen Goldsen et al., 2019). Measures of the LGBTQ+ population have never been included in the U.S. census, but approximately 3 million LGBTQ+ adults 55 or older live in the United States, which is projected to double in the next two decades (Espinoza, 2014; SAGE, 2021). LGBTQ+ older adults tend to be single and living alone without children, which makes it more likely that they will need to rely on families of choice or long-term care facilities as they age (SAGE, 2021).

LGBTQ+ older adults face unique challenges when seeking long-term care services. These include discrimination and harassment, inappropriate or neglectful care, a lack of LGBTQ+-specific resources, and anticipatory stress related to concealing their identities (Caceres et al., 2020; Putney et al., 2018). Approximately 20 percent of LGBTQ+ individuals have not shared their sexual orientation or gender identity with their health care providers because they are afraid of receiving substandard care (Caceres et al., 2020).

LGBTQ+ people who seek nursing home care may have unique health care and social care needs. For example, compared with cisgender and

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² For more information, see https://www.hhs.gov/healthcare/about-the-aca/index.html (accessed October 4, 2021).

heterosexual³ older adults, older members of the LGBTQ+ community are more likely to have poor physical or mental health, delay or avoid seeking health care, report having a disability, be socially isolated, smoke or engage in alcohol or substance use, report suicidal thoughts, have lower incomes, and experience poverty or homelessness (Candrian et al., 2021; SAGE, 2021).

Members of the LGBTQ+ community may face harassment and abuse in nursing homes. Nearly one-quarter of LGBTQ+ report experiencing verbal or physical harassment, or both, from other residents, and approximately 14 percent report experiencing verbal or physical harassment, or both, from staff (Justice in Aging et al., 2015). Significant percentages of LGBTQ+ adults report fearing neglect (67 percent), abuse (62 percent), limited access to services (61 percent), and verbal or physical harassment (60 percent) in long-term care settings (Houghton, 2018). Efforts to improve the quality of care for this population of nursing home residents include enhanced staff training in LGBTQ+-affirming care (Putney et al., 2018).

Race and Ethnicity

In 2018, 23 percent of all adults over 65 in the United States identified as part of racial and ethnic minority populations (about 9 percent were non-Hispanic Black, 6 percent were non-Hispanic other, and 8 percent were Hispanic) (AoA, 2020). Similarly, the majority of nursing home residents are non-Hispanic White, with smaller percentages identifying as non-Hispanic Black, Hispanic, or non-Hispanic other (see Figure 2-2) (Bowblis et al., 2021; Harris-Kojetin et al., 2019). Minority residents make up less than 2 percent of a facility’s population in nearly half (43 percent) of all U.S. nursing homes (Sloane et al., 2021). However, the nursing home population (like the United States itself) is becoming more diverse. (See Chapter 5, Figure 5-3, for racial and ethnic diversity among nursing home staff.)

Disparities

A myriad of factors contribute to resident racial and ethnic disparities within and between nursing homes, including (1) limited clinical resources, (2) limited financial resources, (3) limited community resources, (4) lower levels of direct care, (5) limited or no bilingual staff or ombudsmen, and (6) larger staffing shortages (Lee et al., 2021). As a result, residents of racial or

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³ Cisgender is defined as “having or relating to a gender identity that corresponds to the culturally determined gender roles for one’s birth sex (i.e., the biological sex one was born with)”; heterosexuality is defined as “sexual attraction to or activity between members of the opposite sex” (APA, 2020a,b).

ethnic minority groups receive lower-quality care, which may result in higher rehospitalization rates and greater difficulties being discharged into their community as compared with non-Hispanic White residents (Lee et al., 2021).

For example, White nursing home residents with Alzheimer’s disease and related dementias (ADRD) are more likely than Black or Hispanic residents to receive care in nursing homes with Alzheimer’s special care units, which results in better health outcomes (Rivera-Hernandez et al., 2019). White nursing home residents with ADRD are also less likely to

• receive care in for-profit facilities, which typically demonstrate lower levels of quality than nonprofit facilities (see Chapter 8); and
• be enrolled in Medicare Advantage plans (which may be less willing to cover high use) (see Chapter 7) (Rivera-Hernandez et al., 2019).

White residents with ADRD are also less likely to be cognitively, functionally, or physically impaired compared to Hispanic and African American residents with ADRD, which suggests that the latter may be admitted to a nursing home at a later stage in their ADRD disease progression and receive delayed and inadequate care, although more research is needed to understand these characteristics’ impact on access to services (Rivera-Hernandez et al., 2019).

One study in Minnesota used a resident-level dataset of long-stay residents to measure general quality of life and six simplified domain scores for resident quality of life in facility environment, attention from staff, food

enjoyment, engagement, negative mood, and positive mood (Bowblis et al., 2021). In this study, the overall summary score reflected that Black, Indigenous, and other people of color (BIPOC) report lower quality of life than White nursing home residents (Bowblis et al., 2021). Previous studies found that disparities in quality of life for BIPOC residents, which was mostly explained by the racial composition of the facility itself (i.e., a higher percentage of BIPOC residents) (Bowblis et al., 2021; Shippee et al., 2016, 2020). Bowblis and colleagues (2021) concluded that “efforts need to focus on addressing systemic disparities for [nursing homes] with a high proportion of residents who are BIPOC” (p. 1051). Additionally, facilities with a higher concentration of racial and ethnic minority residents are more likely to have lower staffing levels, increasing their risk of poor-quality care (Li et al., 2015a,b). Another study found that Black residents were more likely than White residents to be dually eligible for Medicare and Medicaid and less likely to be admitted to nursing homes with four- or five-star ratings (Yan et al., 2021; see also Sharma et al., 2020). (See Chapter 3 for more on the five-star rating system.) Dual-eligible residents are more likely to be discharged to nursing homes with low staffing ratios and so more likely to become long-stay residents than Medicare-only beneficiaries (Rahman et al., 2014).

Research also reveals disparities in care, such as lower flu vaccination rates (Travers et al., 2018a,b), higher hospital readmission rates, and greater feelings of social isolation among racial and ethnic minorities than White residents in the same facility (Lee et al., 2021). According to reports by ombudsmen, racial and ethnic minority residents may avoid filing complaints about the quality of nursing home care out of fear of retaliation (Lee et al., 2021).

State surveyors are not required to collect data on race and ethnicity, nor are ombudsmen required to evaluate the quality of care and quality of life based on racial and ethnic differences. Other factors, such as privacy-related data constraints and small numbers of populations, also increase the difficulty in collecting and reporting data related to the race and ethnicity of nursing home residents (e.g., the Centers for Medicare & Medicaid Services [CMS] cannot publish data containing individual identifiers for a population of fewer than 10 individuals) (CMS, 2020). Moreover, racial and ethnic bias and sensitivity training is not currently required for nursing home staff (Mauldin et al., 2020). The lack of robust data specific to race and ethnicity in nursing homes makes it difficult to document the true extent and impact of disparities in care.

Systemic Issues

Systemic failings, such as neighborhood segregation, racism, and ageism, have had a long-standing impact on health care practices and policies, including those involved with nursing home care (Bowblis et al., 2021; Sloane et al., 2021). A systematic review of racial and ethnic disparities

found that most are among long-term care facilities rather than within facilities, reflecting inequities in resources and infrastructure associated with residential segregation (Konetzka and Werner, 2009). Other studies have shown extensive racial segregation among nursing homes (Mack et al., 2020; Mauldin et al., 2020) and described the key factors driving it: (1) race-based facility preferences, (2) systemic racism, (3) disparities in funding, and (4) unequal distributions of staff (Mack et al., 2020).

This segregation contributes to consistently worse health outcomes in nursing homes for racial and ethnic minority populations, particularly if they are of lower socioeconomic status (Bowblis et al., 2021; Travers et al., 2021). For example, nursing homes located in an urban setting are at higher risk for having residents with low social engagement, which can contribute to worse physical health and low life satisfaction, increased social isolation and loneliness, higher mortality, poorer quality of life, cognitive decline, and visual or communication impairment (Bliss et al., 2017). These poor outcomes are exacerbated by reduced access to quality health care. These health and health care disparities accumulate over the life course to create and sustain inequities in resident outcomes (Bowblis et al., 2021).

Short-Stay and Long-Stay Residents

Nursing home residents comprise two distinct populations. Post-acute patients typically are admitted after a hospital stay and represent 43 percent of the nursing home population. Long-stay residents typically require care for chronic medical conditions and/or assistance with activities of daily living and represent 57 percent of the patient population (Harris-Kojetin et al., 2019). The average length of stay for a long-stay resident is 2.3 years, compared to 28 days for short-stay patients (Sifuentes and Lapane, 2020). The majority of the current long-stay population is White, but it is becoming more diverse (as discussed) (Bowblis et al., 2021). Figure 2-3 describes the common types of short- and long-stay residents.

Compared with short-stay residents, long-stay residents are more often women, more likely to be over the age of 65, and have higher rates of mental and chronic illnesses (Harris-Kojetin et al., 2019).

Residents under 65 account for 18.6 percent of the short-stay and 14.9 percent of the long-stay population (Harris-Kojetin et al., 2019). Recent findings indicate that a higher proportion of short-stay residents (23.8 percent) required an overnight hospital stay while living in a nursing home than long-stay residents (8.7 percent) (Harris-Kojetin et al., 2019).⁴

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⁴ This report used overnight hospitalization rates as measures of adverse and potentially avoidable events, but the data could also be the result of short-stay residents requiring hospitalization for acute illnesses or reflect differences in care preferences, as long-stay residents may prefer comfort care over hospitalization.

Common Health Conditions

About 14.9 percent of people living in nursing homes require help with at least five activities of daily living (ADLs)⁵ (CMS, 2015). Most have more than one chronic condition (such as arthritis, hypertension, diabetes, heart disease, or osteoporosis), and some also experience cognitive impairments or behavioral health conditions. The health of the nursing home population often differs between short- and long-stay residents (see Table 2-1).

Younger nursing home residents may have a wide range of care conditions, including depression, young-onset dementia, schizophrenia, seizure disorders, intellectual disabilities, traumatic injury, or hemi-quadriplegia, and many have little family or community support (Persson and Ostwald, 2009). Road traffic injuries, violence, and combat or sport injuries are common causes of traumatic brain injury and hemi-quadriplegia in this population (Shieu et al., 2021). Residents under 65 often experience higher rates of obesity, intellectual disabilities, and hemiplegia and quadriplegia than older adults in nursing homes (Persson and Ostwald, 2009).

Care Needs and Services Provided

To care for people with a variety of conditions, nursing homes provide a spectrum of services, including skilled nursing and medical care, 24-hour supervision, hospice and end-of-life care, treatments related to bladder or bowel incontinence, and assistance with ADLs.

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⁵ Activities of daily living are skills required to manage one’s needs and can include basic ADLs (e.g., walking, feeding, dressing, personal hygiene, continence, and toileting) and instrumental ADLs (e.g., transportation, shopping, managing finances, meal preparation, housecleaning, and managing medications) (Edemekong et al., 2021).

TABLE 2-1 Common Conditions Among Nursing Home Residents

SOURCES: CMS, 2015; Grabowski et al., 2010; Harris-Kojetin et al., 2019; Hunnicutt et al., 2017.

NOTE: Grabowski et al. (2010) uses the phrase “significant mental health disorder” to capture the various definitions used in other sources. The three studies define their variables differently to include psychiatric diagnoses, psychiatric morbidity, perceived mental health status, and any other mental health diagnosis.

As noted above, most nursing home residents need assistance with one or more ADLs, most frequently for the following:

• Bathing (96.7 percent),
• Dressing (92.7 percent),
• Toileting (89.3 percent),
• Walking or locomotion (92.0 percent),
• Transferring in and out of bed (86.8 percent), and
• Eating (59.9 percent) (Harris-Kojetin et al., 2019).

The majority of nursing homes provide both short-term rehabilitation and subacute care.⁶ Individuals receiving subacute care have variations in the intensity of their care needs and the stability of their conditions.

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⁶ Subacute care is defined as intensive care typically provided in skilled nursing facilities for those with a critical illness, such as cancer or injury. It is less intensive than acute care, which is more typically provided in hospitals for debilitating illnesses, such as strokes and heart attacks, or recovery after a major surgery (Martel, 2019).

In contrast, the long-stay residents who need long-term care services and support typically have many chronic conditions (including one or more geriatric syndromes⁷) that require professional nursing surveillance to identify subtle changes in condition that could lead to hospitalization and potentially death. Some nursing homes have further diversified by providing specialty care focusing on, for example, dementia care and hospice or end-of-life care (Sherman and Touhy, 2017).

Nursing homes commonly deliver rehabilitation services, such as physical, occupational, or speech therapy for both long-stay and post-acute residents (NIA, 2021). Overall, about 32 percent of residents received rehabilitation services in 2016 (Harrington et al., 2018).

Nursing homes provide care through the end of life, and most (80.7 percent) offer hospice services (Harris-Kojetin et al., 2019).⁸ From 1999 to 2019 (before the COVID-19 pandemic), an average of 21 percent of all deaths and 27 percent of all deaths among individuals at least 65 years old in the United States occurred in nursing homes or long-term care facilities (CDC, 2020b).

Chapter 4 provides an in-depth discussion of resident care needs and the services provided in nursing homes.

NURSING HOME CHARACTERISTICS

The broader continuum of long-term care facilities and services includes the following:

• independent living,
• outpatient therapy,
• inpatient therapy,
• home-based primary care,
• in-home services and supports,
• medical foster homes,
• residential care communities,⁹

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⁷ Geriatric syndromes are common health conditions among older adults. Four shared risk factors—older age, baseline cognitive impairment, baseline functional impairment, and impaired mobility—have been identified across five common geriatric syndromes (pressure ulcers, incontinence, falls, functional decline, and delirium). Geriatric syndromes do not fit into typical discrete conditions and are often assessed more holistically as multifactorial health conditions (Inouye et al., 2007).

⁸ Calculated by the National Center for Health Statistics as the number of beds in a unit identified and dedicated by a facility for residents needing hospice services and/or the number of residents receiving hospice care benefit (Harris-Kojetin et al., 2019).

⁹ Residential care communities cover a variety of residential settings, including assisted living facilities.

• adult day care,
• nursing homes, and
• hospice care (see Chapter 4 for more discussion on hospice services).

The various care settings in this continuum have different funding streams, ownership, and regulations, which can complicate care coordination and communication as individuals move across these settings (Goldberg, 2014).

Size, Type, and Location

The United States has 1.7 million nursing home beds, the vast majority of which (97.5 percent) are Medicare certified (CDC, 2020a; Harris-Kojetin et al., 2019). The number of certified beds in an individual nursing home ranges from 2 to 1,389, with an average of 106. The South has the largest share (34.8 percent) of nursing homes, while the Midwest has the largest share of nursing home beds. Metropolitan areas account for the large majority of nursing homes (71.5 percent), with 13.9 percent in micropolitan areas and 14.6 percent in other areas of the country¹⁰ (Harris-Kojetin et al., 2019).

Nursing homes can be characterized according to their own unique design elements, the considerations for resident and staff well-being, and the type of care delivered. Common examples of the various types of nursing homes are listed below (Table 2-2).

The U.S. Department of Veterans Affairs

The Veterans Health Administration (VHA), an operating unit within the U.S. Department of Veterans Affairs (VA), is the largest integrated health care network in the United States, providing care to more than 9 million veterans per year.¹¹ In 2015, the VHA spent $7.4 billion (13 percent of health care expenditures) for long-term care services (Colello and Panangala, 2017). The VA provides long-term care in three settings classified as nursing homes: approximately 134 community living centers (VA owned and operated), approximately 1,769 community nursing homes (VA-contracted non-VA nursing homes), and approximately 148 state veterans homes (state-owned and -managed centers providing full-time care) (GAO, 2019). VA nursing homes can provide both post-acute and long-term care (VA, 2021).

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¹⁰ “Each metropolitan statistical area must have at least one urbanized area of 50,000 or more inhabitants. Each micropolitan statistical area must have at least one urban cluster of at least 10,000 but less than 50,000 population” (Census Bureau, 2021a).

¹¹ For more information, see https://www.va.gov/ (accessed November 3, 2021).

TABLE 2-2 Common Types of Nursing Homes

SOURCES: Adapted from CMS, 2021a; Cohen et al., 2016; de Boer et al., 2018.

Compared with the general nursing home population in the United States, the veteran nursing home population tends to be younger, more likely to be male, and more likely to suffer from disability, illness, chronic pain and injuries, and mental illnesses (NCVAS, 2020; VA-OIG, 2020). In 2019, the U.S. Government Accountability Office projected that the percentage of veterans requiring nursing home care would increase significantly (by 16 percent) between 2017 and 2022 (GAO, 2019).

Pediatric Nursing Homes

Pediatric nursing homes are also available for those under the age of 21. Data from 2015 identify about 29,000 children residing in 100 U.S. pediatric long-term care facilities (Hessels et al., 2017). That number has

decreased in recent years due to an increased emphasis on home- and community-based settings (Friedman and Kalichman, 2014). An overwhelming majority (90 percent) of children with complex care needs¹² rely on Medicaid; their cost of care is expected to continue rising dramatically (PCCA, 2016). This population commonly includes children who

• are medically fragile;
• need brief, acute care after hospitalization;
• have complex medical needs;
• have functional impairments;
• have developmental or cognitive disabilities;
• require ventilator support;
• have more than one chronic condition; or
• have life-limiting conditions.

Similar to adult nursing homes, pediatric nursing homes typically provide skilled nursing care, occupational therapy, and recreational therapy (Children’s National Hospital, 2021; Hessels et al., 2017; Nursing Home Law Center, 2010; Stein, 2001). Unlike adult nursing homes, pediatric facilities typically also coordinate with the local education system and provide other resident and family educational services (Children’s National Hospital, 2021; Hessels et al., 2017; Stein, 2001). Children with complex care needs often need advanced medical devices, such as tracheostomies, gastric feeding tubes, or ventilators (PCCA, 2016). The length of stay in a nursing home varies significantly within this population: some children stay briefly after birth due to difficulty breathing, some stay for brief periods when their caregivers are unavailable, and some remain long term, eventually transitioning to adult facilities. At age 18 or 21, most “age out” of pediatric nursing homes (Children’s National Hospital, 2021; HealthCarePathway.com, 2022; PCCA, 2016, 2020; Stein, 2001). This transition can be extremely confusing and labor intensive for families, as only about 40 percent of families receive transition services, funding streams often end and change, and adult nursing home providers often are not expert in caring for these individuals (PCCA, 2016; Stein, 2001). Additionally, no facilities specialize in caring for a population transitioning out of pediatric care, so

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¹² Children with complex care needs most often have conditions in four categories: (1) chronic, severe health conditions, (2) substantial health service needs, (3) functional limitations, which are often severe, or (4) high health resource use. More technically, these children are classified under Clinical Risk Group of 5b or higher (PCCA, 2016). Examples of typical diagnoses include chronic lung disease, congenital heart disorders, orthopedic and respiratory conditions, spina bifida, traumatic brain injury, and congenital anatomical malformations; “these diagnoses are often accompanied by one or several comorbidities, and many also present with some form of developmental delays and intellectual disabilities” (PCCA, 2016).

most young adults enter traditional nursing facilities. This can be particularly difficult for residents aged 22–35 who may be socially isolated and not receive the care they need in typical nursing home settings (Ansberry, 2007; Marselas, 2019; Stein, 2001). Children and young adults living in adult nursing homes can be vulnerable to a variety of forms of mistreatment or abuse, including sexual abuse, physical abuse, neglect, molestation, and medication errors (Nursing Home Law Center, 2010). Additional challenges include the lack of pediatric-specific state regulations, unfamiliarity with the pediatric population on the part of surveyors, staffing shortages, and a lack of pediatric quality indicators or assessment tools (PCCA, 2016).

Critical Access Hospitals

CMS-designated critical access hospitals (CAHs) aim to improve access to essential services in rural locations. Some CAHs have extended care units that are licensed as nursing homes, as rural areas are less likely to have stand-alone facilities. This allows CAHs to use inpatient beds for acute care or nursing home–level care as needed, most often for older adults requiring post-acute care (RHIH, 2019). Overall, CAHs receive benefits to reduce the financial vulnerability of rural hospitals due to low census and are also eligible for Medicare cost-based reimbursement instead of payment by Medicare’s Prospective Payment System (RHIH, 2019). However, CAH swing beds for post-acute nursing home care are not eligible for cost-based reimbursement (RHIH, 2019).¹³ About 1,352 small rural hospitals are designated as CAHs in 45 states, and approximately 22 percent of them own a nursing home (Castellucci, 2020; Flex Monitoring Team, 2020). These hospitals have an overall occupancy rate of about 36 percent when including both observational and post-acute swing beds (MedPAC, 2021). In 2018, Medicare paid over $11 billion in total cost-based payments to CAHs, with an average payment of $8 million per CAH for all hospital care. This represents approximately 5 percent of all Medicare payments for inpatient and outpatient hospitals (MedPAC, 2020).

FACTORS THAT INFLUENCE THE QUALITY OF CARE IN NURSING HOMES

A variety of factors influence the quality of care in nursing homes. The following sections give a high-level overview for several key factors, including quality measurement and quality improvement, the workforce, the environment and safety, financing and payment, ownership, quality

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¹³ 42 CFR § 413.114(c); see: https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-B/part-413 (accessed February 15, 2022).

assurance, and HIT. All of these topics are covered in more detail in subsequent chapters of this report.

Quality Measurement and Quality Improvement

Ensuring and improving the quality of care in nursing homes requires measuring it in order to inform consumers, hold providers and organizations accountable, and support evidence-based treatments and interventions. The current system for quality measurement in nursing homes is the CMS Five-Star Rating System, which establishes a score based on health inspections, staffing levels, and clinical outcomes. However, these measures do not include the resident and family experience. Chapter 3 further explores issues related to quality measurement and improvement.

Nursing Home Workforce

Nursing homes rely on 1.2 million individuals to provide care and maintain facilities (Denny-Brown et al., 2020). They typically use a variety of workers, including nursing staff (e.g., registered nurses, certified nursing assistants), administrators, housekeeping staff, dietary staff, and medical and social care providers. The vast majority of direct care is provided by low-paid, racially diverse, primarily female workers (Sloane et al., 2021). The number and types of staff may depend on the number of residents and the scope of services provided. Some of the workers may be contracted through agencies rather than hired as employees.

Nursing homes have historically struggled with workforce shortages and high rates of turnover—both exacerbated by the COVID-19 pandemic. Facility-level data from the Long-Term Care Facility Staffing Payroll-Based Journal shows that daily staffing levels varied greatly by facility and are often below CMS recommended levels; for example, 75 percent of nursing homes were almost never in compliance with registered nurse (RN) staffing levels (Geng et al., 2019). Similarly, turnover rates also varied but were well over 100 percent for RNs, licensed practical nurses, and certified nursing assistants (Gandhi et al., 2021). Between September and October 2021, over 30 percent of facilities reported staffing shortages (Paulin, 2021). Chapter 5 discusses the nursing home workforce and issues related to staffing.

Nursing Home Environment and Safety

The physical environment of nursing homes has a significant effect on resident well-being and quality of life. Most were built in the 1960s and 1970s, mirror the design of a hospital, and are not fully equipped to provide high-quality care (see Chapter 4 for more discussion) (Eijkelenboom

et al., 2017; Kramer, 2021; Schwarz, 1997). Certain features of the environment can decrease quality of life, hinder infection control, and create barriers for staff caring for residents, including large buildings and units (Waters, 2021), shared rooms (Nygaard et al., 2020), poor air flow and filtration (Lynch and Goring, 2020), poor lighting (Wu et al., 2015), unwanted noise (Sloane et al., 2002), and limited outdoor access (Sandvoll et al., 2020). Ensuring resident safety requires addressing issues such as infection control, medication safety, physical injury prevention, and emergency preparedness. Chapter 6 further explores the environment and safety of nursing homes.

Financing and Payment

In 2020, Medicaid covered the majority of nursing home residents (62 percent); Medicare Part A was the primary payer for 12 percent of residents, and 26 percent had private insurance (KFF, 2020a). Medicare is the predominant payment source for post-acute care (typically associated with short-stay residents), while the federal-state Medicaid program primarily pays for long-term care in nursing homes (KFF, 2007, 2017; Sifuentes and Lapane, 2020).

Given that state Medicaid programs play a large role in paying for long-term nursing home care, competition among nursing homes is limited, which can limit incentives to improve quality. Additionally, Medicaid must provide long-term care to eligible individuals, but it is only required to do so in nursing home facilities. Many people prefer alternatives to nursing homes, but the availability of home and community-based care varies by state and may impact a resident’s decision to enter a nursing home if no other options are available (Reaves and Musumeci, 2015). In 2018, for instance, 185,774 Medicaid beneficiaries were on a waitlist for home-based care (KFF, 2018). Facilities with higher proportions of Medicaid residents are often underresourced, understaffed, and located in poor and minority communities (Li et al., 2015a; Mack et al., 2020; Mor et al., 2004; Taylor et al., 2020).

According to industry surveys, the average cost of nursing home care has risen significantly over the past few years; this is projected to continue (Witt and Hoyt, 2021) and will likely create issues of access as the age and proportion of the U.S. population needing long-term care also rises (Johnson et al., 2021). According to one estimate, in 2016, the annual cost for a semi-private nursing home room was $82,128, and the annual cost for a private nursing home room was $92,376 (Witt and Hoyt, 2021). By 2030, costs are projected to rise to $125,085 and $142,254, respectively. Another study estimates approximately 7.8 million seniors (54 percent) will not qualify for Medicaid even after spending down their housing assets and will not be able afford nursing home care

in 2029 (Pearson et al., 2019). Chapter 7 further explores the financing and payment of nursing home care.

Ownership

The majority of nursing homes (69.3 percent) are for profit, with nearly one-quarter nonprofit and 7.2 percent government owned (Harris-Kojetin et al., 2019). Private equity firms own approximately 11 percent of nursing homes (Gupta et al., 2021; Spanko, 2020). Nearly 60 percent of nursing homes are affiliated with a chain—defined as corporations that own or run two or more such facilities (Harris-Kojetin et al., 2019; Stevenson et al., 2013). State-level trends have demonstrated that the ownership of nursing homes by large national chains is declining and the number of smaller, regional, private investment-owned facilities is increasing (Stevenson et al., 2013). Researchers and policy makers have an increasing interest in determining the relationships between ownership type and quality outcomes; historically, quality has been lower in for-profit nursing homes (Comondore et al., 2009; GAO, 2011; Grabowski and Stevenson, 2008; Harrington et al., 2012; You et al., 2016) and those owned by private equity firms (Gupta et al., 2021; Harrington et al., 2012).

Some private equity investment firms have purchased publicly held chains. There is some evidence that private-equity–owned nursing homes also have lower staffing, poorer resident outcomes, and more deficiencies than nonprofit or public nursing homes (Gupta et al., 2021; Harrington et al., 2001; Pradhan et al., 2014; Stevenson and Grabowski, 2008). (See Chapter 8 for more on nursing home ownership.)

Quality Assurance (Oversight and Regulation)

CMS is ultimately responsible for the regulatory oversight of nursing homes at the federal level, but states assist with conducting inspections to certify compliance with federal regulations. To enforce standards of care, state survey agencies can levy sanctions against poorly performing nursing homes. In 2016, the top deficiencies cited were the following:

1. Infection control (45.4 percent),
2. Food sanitation (42.6 percent),
3. Accident environment (39.8 percent),
4. Quality of care (34.3 percent),
5. Pharmacy consultation (26.8 percent),
6. Unnecessary drugs (24.9 percent),
7. Comprehensive care plan (24.9 percent),
8. Clinical records (22.6 percent),

9. Dignity (20.6 percent), and
10. Qualified personnel (18.3 percent) (Harrington et al., 2018).

Chapter 8 further addresses the oversight and regulation of nursing homes.

Health Information Technology

HIT systems, such as electronic health records designed to facilitate health care delivery, management, and payment, have spread throughout the U.S. health care system. HIT capabilities in effectively promoting patient safety, enhancing the effectiveness of patient care delivery, facilitating the management of chronic conditions, and improving the efficiency of health care professionals are particularly important in nursing home settings, given the characteristics of the population. Residents typically have complex conditions, take multiple medications, and frequently undergo transitions in care (e.g., visits to the emergency department and hospital admissions) (Vest et al., 2019). Moreover, stays tend to be extended rather than episodic, with care typically lasting years rather than weeks or months. This requires more extensive ongoing communication, care coordination activities, and different HIT reporting mechanisms that can support staff in identifying, monitoring, and responding to changes in condition over an extended period (Rantz et al., 2010a,b). Other health technologies, such as telehealth, videoconferencing, and personal monitoring devices, are also effective tools in nursing homes. The importance of these technologies was made clear during the COVID-19 pandemic, when measures such as locking down facilities to protect vulnerable residents from infection limited access to in-person clinical services and residents’ contact with friends and family members (Whitelaw et al., 2020). Chapter 9 explores the role of HIT in and barriers to its widespread adoption by nursing homes.

CRITICAL IMPACT OF COVID-19 ON NURSING HOMES

As of August 2020, nearly half (42 percent) of COVID-related deaths in the United States since the beginning of the pandemic had occurred in nursing homes and assisted living facilities (AP, 2020). By October 2021, that number was 1 in 5, despite residents accounting for only 1.6 percent of cases (CDC, 2021a,b) and less than one-half of 1 percent of the population (CDC, 2020a; KFF, 2020b; U.S. Census Bureau, 2021b). As of February 2022, more than 149,000 residents and more than 2,200 staff members had died of COVID-19 (CDC, 2022).

Population and Environmental Challenges

The nursing home population was especially vulnerable to the severe impacts of COVID-19 due to a variety of factors that increased their risk of infection, including the following:

• the age and health status of many nursing home residents,
• the high number of resident-to-resident interactions that occur as a result of the congregate care setting of nursing homes (including shared rooms), and
• the high number of staff-to-resident interactions among the dozens or sometimes hundreds of residents who require hours of direct care on a daily basis (Abrams et al., 2020; Coe and Van Houtven, 2020; Fallon et al., 2020; Konetzka et al., 2021; Thompson et al., 2020).

Other factors include the challenges of protecting residents with dementia who have difficulty adhering to social distancing and universal masking policies; inadequate and unavailable testing or personal protective equipment; preexisting staffing shortages exacerbated by infections among the staff; the number of low-wage staff who work in more than one facility; and contradictory federal, state, and county guidance and regulations (Konetzka et al., 2021; Ouslander and Grabowski, 2020; Thompson et al., 2020). These factors resulted in a large number of resident hospitalizations and deaths both in the United States and internationally.

Infection Prevention and Control Challenges

Another factor shaping the COVID-19 pandemic’s effect was that nursing homes did not have adequate expertise and experience in the infection prevention and control practices necessary to limit the introduction and transmission of the virus within facilities (Grabowski and Mor, 2020). In 2020, a U.S. Government Accountability Office (GAO) report concluded that “infection control deficiencies were widespread and persistent in nursing homes prior to the pandemic and contributed to rapid spread of COVID-19 in facilities” (GAO, 2020). The entire health care system was struggling to address these issues due to an overall lack of prioritization, action, and support from the larger emergency response community and federal government.

While CMS requires that each nursing home have a staff member who is responsible for infection prevention and control,¹⁴ this is not usually a

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¹⁴ CMS Requirements for Long Term Care Facilities—Infection Control, 42 CFR § 483.80 (2016).

full-time position, and such persons also have many other responsibilities. Efforts to isolate or cohort¹⁵ those infected or quarantine those exposed were often delayed or inadequate and sometimes nonexistent, resulting in spread of the virus throughout facilities. Additionally, a lack of testing and consequent underestimate of COVID-19 prevalence resulted in delays in implementing limits on congregate activities, such as dining and group activities. Combined with a lack of personal protective equipment (PPE), these delays also facilitated spread of infection. Although CMS, CDC, state departments of health, and others issued infection control guidance, its volume and frequent changes posed significant challenges to nursing homes, which struggled to interpret, keep up with, and adapt to the latest guidance.

Adequate supplies of PPE, testing, and resources were not available in the early days of the pandemic and varied greatly by state. Staff were not adequately trained in infection prevention and control practices, including the appropriate use of PPE. Staff had not been fit tested for N95 respirators or trained in their use (Denny-Brown et al., 2020; GAO, 2020).

Recognizing the importance of asymptomatic infection in disease transmission was also delayed, with early reports claiming that it was not a major factor (CNBC, 2020). It has now been well documented that asymptomatic or pre-symptomatic infection was often how COVID-19 was introduced into, and spread within, nursing homes. Access to testing for COVID-19 was inadequate to identify those infected, either residents or staff, whether symptomatic or asymptomatic (Ouslander and Grabowski, 2020). Early on, when the availability of testing was very limited, nursing homes had to depend on symptom screening of staff and residents to protect residents, which did not identify many who were infected and able to transmit the virus. Testing staff was as important as testing residents. Moreover, appropriate public health measures, such as having staff work with only infected or uninfected residents if at all possible, were not put in place quickly (Konetzka et al., 2021; Ouslander and Grabowski, 2020).

Communication Challenges

Poor communications and the lack of integration between nursing homes and public health departments resulted in the failure to identify and address COVID-19 outbreaks promptly and implement appropriate recommendations and requirements. As noted, the changing nature of

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¹⁵ Cohorting, as defined by the Centers for Disease Control and Prevention (CDC), is the infection prevention and control practice “of grouping patients infected or colonized with the same infectious agent together to confine their care to one area and prevent contact with susceptible patients” (CDC, 2015). CDC guidance instructed facilities to identify a separate space to monitor and care for residents with confirmed COVID-19 infections (CDC, 2021d).

what was known about the virus itself and its transmission meant that recommendations from local, state, and federal public health agencies were changing frequently (CDC, 2021e; Espinosa, 2020). Nursing homes had difficulty monitoring these recommendations and often depended on local public health agencies to provide ongoing recommendations and requirements; this included recommendations for the duration of isolation and quarantine, diagnostic testing, monitoring of outbreaks (and determination of when outbreaks ended), requirements for PPE, and ongoing symptom monitoring for residents and staff (CDC, 2021d; Yurkofsky and Ouslander, 2021b).

Additionally, public health guidance contributed to fragmentation across the larger health care system, placing additional burdens on nursing homes. For example, nursing homes were required to accept hospital admissions who tested positive to relieve the overburdened hospitals (Altimari and Carlesso, 2022; CTDPH, 2022; Gleckman, 2020; Khimm, 2020; Sapien and Sexton, 2020). Lack of communication and resource sharing across the different health care sectors also contributed to the devastating impact in nursing homes (see Chapter 6 for more discussion on these issues).

Disparities Among Nursing Home Residents During COVID-19

In the first 6–8 months of the pandemic, nursing homes serving more than 40 percent non-White residents experienced more than three times as many COVID-19 cases and deaths as those serving primarily White residents (Gorges and Konetzka, 2021). These nursing homes tended to receive fewer quality rating stars, have higher concentrations of residents, and be located in urban areas (Abrams et al., 2020; Garcia et al., 2020). However, neither differences in the quality ratings nor the residents’ prior underlying health appeared to explain COVID-19 disparities; rather, much of the difference was explained by high-minority facilities being larger and located in areas of higher COVID-19 prevalence (Gorges and Konetzka, 2021).

The pandemic had a greater impact on the nursing homes with a higher number of Black and Latinx residents (Gebeloff et al., 2020; Li et al., 2020a,b). Often such nursing homes are in communities with larger Black and Latinx populations, in areas with higher community rates of COVID-19 infection, or both (Garcia et al., 2020). Facilities with higher proportions of Black and Latinx residents also typically have limited resources, which negatively affects their access to PPE or infection prevention and control expertise (Sloane et al., 2021; Taylor et al., 2020). Moreover, Black and Latinx individuals are more likely to suffer serious consequences from COVID-19 infection because of deeply ingrained inequalities that make them more likely than White adults to have greater physiological dysregulation and accelerated biological aging (Garcia et al., 2020).

Later in the pandemic, the disproportionate effect on racial and ethnic minorities dissipated and reversed; by fall 2020 and winter 2021, nursing homes with more White residents had higher case and death rates (Gilman and Bassett, 2021; Kumar et al., 2021). This shift was consistent with where the virus was most prevalent during that time—states in the West and Upper Midwest with smaller non-White populations.

Some sources indicate that LGBTQ+ older adults may be more vulnerable to COVID-19 infection (SAGE and the Human Rights Campaign Foundation, 2020), but detailed data are not yet available.

The pandemic also had a significant impact on Medicare beneficiaries; about 42 percent of the 3.1 million nursing home residents who were Medicare beneficiaries had (or probably had) COVID-19 in 2020 (OIG, 2021). Furthermore, dually eligible beneficiaries were even more likely than Medicare-only beneficiaries to contract and die from COVID-19 (OIG, 2021).

Social Isolation and Loneliness

Nearly one-quarter of Americans 65 or older are considered socially isolated, and 43 percent of adults over 60 years old report feeling lonely (Anderson and Thayer, 2018; Cudjoe and Kotwal, 2020; Perissinotto et al., 2012). Residing in a nursing home can exacerbate feelings of loneliness (Trybusin´ska and Saracen, 2019). The majority (76 percent) of nursing home residents in a study of 365 people reported feeling lonelier than usual during the COVID-19 pandemic (Montgomery et al., 2020). More than half (64 percent) also indicated that they “no longer leave their rooms to socialize” with other residents (Montgomery et al., 2020).

The proportions of residents socializing with outside visitors, participating in activities, leaving their rooms, and eating communally all decreased sharply during the pandemic. In addition, nursing homes severely limited or prevented visitation by family members and loved ones to align with CMS directives, which exacerbated the impact of social isolation and loneliness. There were delays in identifying ways to address this isolation while also limiting residents’ exposure to the virus (Montgomery et al., 2020). See Chapters 8 and 9 for more discussion on the impact of visitation restrictions.

Staffing Challenges

Multiple studies found that higher nurse staffing ratios mitigated the effect of an outbreak and resulted in fewer deaths (Gorges and Konetzka, 2020; Harrington et al., 2020; Konetzka et al., 2021; Li et al., 2020a). However, higher staffing ratios were not able to prevent an outbreak, given the role of staff traffic in COVID-19 into facilities. One study found that facilities with

fewer unique staff members, defined as total staff size entering the facility each day, experienced fewer cases among residents than facilities with large numbers of distinct staff members, even after controlling for facility size, staff skill level, and direct care ratios (McGarry et al., 2021a). This issue was especially lethal when little was known about asymptomatic transmission and therefore widespread testing of asymptomatic individuals was uncommon. Nursing home workforce shortages intensified during the pandemic but varied by time and urban or rural location (Yang et al., 2021). A cross-sectional time-series study of over 15,000 nursing homes found that while urban nursing homes reported a relatively constant staffing shortage, rural nursing homes saw an increase in staffing shortages until November 2020 (Yang et al., 2021).

Vaccination Challenges

Introducing vaccines and prioritizing their distribution in long-term care facilities in late December 2020 greatly alleviated the impact of COVID-19 in nursing homes, whose vaccination rate is much higher than the national average (CDC, 2021c; CMS, 2021b). For example, new resident COVID-19 cases declined by 48 percent among vaccinated residents in the 3 weeks after a December 2020 vaccine clinic compared to a 21 percent decline in unvaccinated residents (Domi et al., 2021). As of December 1, 2021, U.S. nursing home staff had 677,173 COVID-19 cases and 2,152 COVID-19 deaths. Nationally, an average of 74.3 percent of staff members and 86.4 percent of residents were vaccinated per facility (CMS, 2021b).

Vaccination rates and COVID-19 cases and deaths varied by state; for example, Rhode Island had about 95 percent of residents and about 99 percent of staff vaccinated, whereas Nevada only had about 76 percent of residents and about 81 percent of staff vaccinated (CMS, 2021b). Organizational characteristics have also affected vaccine coverage. Nursing homes that are nonprofit and nonchain have higher rates of vaccine coverage (McGarry et al., 2021b; White et al., 2021). Race and ethnicity also influenced vaccination rates. A 2021 study found that Black residents are more likely to be in higher-risk facilities (which tend to be larger, for profit, and in the southern United States and in communities with high infection rates), where vaccination rates among both residents and staff are low (Reber and Kosar, 2021). One study of 27,000 employees found that vaccination rates varied by race and ethnicity (Feifer et al., 2021); they were highest for Asian (79.1 percent), followed by Pacific Islander (73.3 percent), White (70.3 percent), American Indian/Alaskan Native (61.8 percent), Hispanic (57.8 percent), and Black (50.9 percent) employees (those who did not specify race or ethnicity were 65 percent).

Overall, factors such as low vaccination rates among staff and new variants contributed to the continued serious impact of COVID-19 (McGarry et al., 2022; Nanduri et al., 2021). These staggering statistics are likely

explained, in part, by the nursing home population being older, frailer, and more likely to be diagnosed with multiple chronic conditions compared to the general population.

Nursing Home Characteristics and COVID-19

A recent systematic review of the predictors of COVID-19 cases and deaths in nursing homes found that the two strongest and most consistent predictors were size—with larger facilities being at greater at risk—and COVID-19 prevalence in the surrounding community (Konetzka et al., 2021). Nursing homes with highest community prevalence had an average of five more deaths per facility than those with the lowest community transmission. Furthermore, the data showed no significant association between nursing home quality metrics (as assigned by Care Compare) and COVID-19 outcomes (Abrams et al., 2020; Chatterjee et al., 2020; Gorges and Konetzka, 2020). Beyond the star ratings, several studies examined specific and salient aspects of quality, such as prior infection control citations. These were also not associated with poor COVID-19 outcomes (Abrams et al., 2020; White et al., 2020).

Thus, the evidence reveals that the COVID-19 tragedy in nursing homes was not a “bad apples” problem. High-quality nursing homes were also at risk. This does not mean that quality and infection prevention and control are not important, but perhaps they are not sufficient. The ubiquity of COVID-19 cases and deaths within nursing homes is indicative of a more systemic problem, one that will require systemic solutions.

STRENGTHENING CONNECTIONS OF NURSING HOMES TO THE COMMUNITY AND BROADER HEALTH CARE SYSTEM

Nursing homes are often not well integrated into the local community or broader health care system, which has important implications for a range of issues from resident quality of care and quality of life to emergency planning, preparedness, and response. This apparent disconnect may be a historical artifact of the stigmatization of nursing homes and their residents based on their origins as “poorhouses” (described earlier). Another contributing factor may be community perception of nursing homes as businesses rather than health care institutions (OIG, 2006).

Research on the barriers and facilitators of effective care transitions highlights the importance of partnership among health care organizations, as well as coordination involving the broader health care community. Scott et al. (2017) point out, for example, that “as health care organizations seek to align their strategic priorities with federal incentives to reduce readmissions, it is becoming increasingly clear that no single health care

organization” can provide all the necessary health care resources and services. They note that health care organizations “must engage in sustainable community health partnerships as key points of leverage for improving quality of care and reducing costs” (Scott et al., 2017, p. 444).

Forging effective relationships, strengthening communication, and creating partnerships between nursing homes and hospitals and academic medical centers are critical given that residents often require care in these settings for their often multiple complex medical conditions. Academic medical centers also have created partnerships to improve transitions for nursing home residents in their facilities (Balch, 2020). State and local technical assistance programs often involve academic–provider partnerships to improve the quality of care in nursing homes. Such programs may be particularly well suited to provide technical assistance due to familiarity with the local community and the ability to be seen as a trusted peer and as a result can facilitate the integration of nursing homes into their local communities and the broader health care system (see Chapter 3). Appropriately designed and implemented HIT can strengthen communications to ensure smooth transitions of care across health care settings (see Chapter 9).

Nursing homes are required by law to have their own emergency plans and procedures.¹⁶ However, these plans are often incomplete and lack detail, making it difficult for administrators to execute them (OIG, 2012). It is imperative to explicitly include nursing homes in all elements of emergency planning, preparedness, and response at the federal, state, and local levels, as discussed further in Chapter 6. Moreover, as demonstrated during the pandemic, local academic medical centers can serve as sources of infection prevention and control expertise (Balch, 2020).

Community Engagement: Linking to Quality of Life and Care

Integrating the nursing home into the broader community is also critical on the level of the individual resident and family as well as staff members. Community engagement initiatives are emerging factors contributing to quality care and quality of life in nursing homes. These initiatives can strengthen civic ties and partnerships with external organizations. Community engagement, also referred to as “civic engagement,” may involve residents volunteering at organizations or events, intergenerational interactions, mutual aid,¹⁷ or the infusion of community events and activities

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¹⁶ CMS Requirements for Long Term Care Facilities—Emergency Preparedness, 42 CFR § 483.73 (2016).

¹⁷ Mutual aid societies or networks date back to the early nineteenth century, refer to people cooperating to meet shared needs or face shared challenges, and are viewed as a way to build solidarity and connection between members of the community.

within the nursing home. Community engagement is an important component of person-centered care in that it emphasizes both meaningful engagement and social relationships, which are key constructs of this model of care (Hirdes et al., 2020). Increased community engagement activities are linked to strong culture change practices (Anderson and Dabelko-Schoeny, 2010; Duan and Mueller, 2019; Miller et al., 2018), increased resident psychological well-being and life satisfaction (Buedo-Guirado et al., 2020; Yuen et al., 2008), quality of life (Van Malderen et al., 2013), and positive effects on resident mental and functional health (Leedahl et al., 2015).

In one study that examined the typology of culture change implementation across nursing homes, findings linked higher frequencies of family and community engagement with facilities that strongly embraced culture change practices (Duan and Mueller, 2019). Another study found that in populations of older adults with extensive physical disabilities, social networks influenced social engagement, which increased quality of life (Jang et al., 2004).

Increased collaborative efforts with community organizations may also propel positive change in nursing homes and act as a supportive resource for improvement. One model, the Seniors Quality Leap Initiative, drives positive change in quality of care and quality of life practices in nursing homes. This model is composed of 11 organizations in Canada and the United States that meet with participating nursing homes through virtual and in-person meetings. Quality improvement initiatives include using evidence-based clinical quality of care indicators and quality of life metrics to establish common change initiatives (Hirdes et al., 2020).

THE FUTURE OF NURSING HOME CARE

Nursing homes within the long-term care continuum in the United States are characterized by a disjointed system with a lack of data, different funding streams, variable oversight, and insufficient communication—all of which combine to make quality improvement extremely difficult (Goldberg, 2014). Despite decades of improvement efforts, nursing homes still face many long-standing challenges in delivering quality care, many of which were revealed and exacerbated by the COVID-19 pandemic. Several additional challenges are imminent. The United States, like much of the world, has an aging population. Half of today’s 65-year-olds will need some paid long-term care services before they die. By 2030, one in four Americans will be age 65 or older. The fastest growing group will be those over age 85; this group is expected to grow from 6.5 million to 11.8 million by 2035 and 19 million by 2060 (Vespa et al., 2020). Marriage and fertility rates have declined, while life expectancy has increased, meaning fewer family caregivers will be available. Additionally, climate

change poses a threat to facilities located in areas where severe weather events are becoming more common.

To bolster nursing homes in the wake of the COVID-19 pandemic, the Nursing Home Improvement and Accountability Act¹⁸ was introduced in August 2021 and is in committees in Congress as of the writing of this report. Designed to improve the quality of care through significant changes in key areas, including workforce, regulation, financial transparency, and accountability, the proposed legislation, if enacted, would

• Increase the federal Medicaid payment to states for the next 6 years,
• Require that funds allocated are used to increase staff pay and expand staffing in order to support and improve resident care,
• Require a registered nurse on duty 24/7,
• Require a full-time infection control specialist,
• Require nursing facilities to report more accurate quality and staffing data to the government,
• Fund a study to determine whether the government should set minimum staffing ratios at nursing homes,
• Ban facilities from mandating that residents sign pre-dispute arbitration agreements, and
• Create a $1.3 billion demonstration program to encourage the construction of facilities that house 5–14 residents.

This legislation addresses many changes necessary to improve quality of care, such as increasing funding, enforcing staffing requirements, and creating smaller facilities. Improving quality is of critical importance as the number of older people and people with disabilities needing long-term care is expected to grow.

Furthermore, the COVID-19 pandemic serves as a powerful impetus for addressing long-standing issues in nursing home care. The John A. Hartford Foundation surveyed more than 1,000 older adults about their preferences for long-term care, and the results underscore the urgency of implementing significant reform measures to improve the quality of care:

• 71 percent say they are unwilling to live in a nursing home in the future,
• 57 percent say COVID-19 influenced whether they would be willing to live in a nursing home,

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¹⁸ Nursing Home Improvement and Accountability Act of 2021, S.782, H.R. 1985; 117th Cong., 1st sess., (March 16, 2021). For more information, see https://www.finance.senate.gov/imo/media/doc/Nursing%20Home%20Improvement%20and%20Accountability%20Act_Sec-by-Sec_Final.pdf (accessed August 20, 2021).

• Nearly 90 percent say changes are needed to make nursing homes appealing to them, and
• Black and Hispanic older adults are more likely to say nursing homes are unsafe (JAHF, 2021).

These findings highlight the need for immediate change to improve the quality of care and quality of life in nursing homes. Achieving this change will require assessing key challenges and opportunities in the areas of quality measurement and improvement, care delivery, the workforce, the environment and safety, the use of HIT, payment and financing, ownership, and quality assurance.

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