Last year, the Equal Justice Society was awarded cy pres funds to develop continuing education curriculum and training models for nursing home administrators and care providers in an effort to address racial disparities in nursing home care.
The cy pres award was made possible with the guidance and assistance of W. Timothy Needham with Janssen Malloy LLP and Kathryn A. Stebner with Stebner & Associates. We were honored to have George Kawamoto from the Stebner firm present the cy pres award to us at our 2014 gala. EJS Legal Director Allison Elgart drafted the cy pres award proposal.
We asked former EJS law clerk Braz Shabrell to assist with this project. Her wonderful work resulted in a thorough and illuminating initial assessment of the subject, which we present in full below.
Studies indicate that there are significant disparities in both the access and quality of care for seniors of color in nursing homes. In California, this impacts a large population:
11.1% of the population of nursing homes is African American, 10.7% Asian/Pacific, and 16.8% Hispanic. These numbers, provided by the Office of Statewide Health Planning and development (OSHPD), have risen dramatically over the past 10 years. While many of the differentials in access to quality care can be explained by structural impediments in our society, at least part of the issue is the failure of existing training.
The problems faced by health care providers and their residents include:
- Discrimination and implicit bias (preferential treatment, neglected health concerns, placement, preventative care);
- Lack of resources;
- Inadequate training, staffing and available information;
- Failed institutional oversight (enforcement, reporting, auditing, complaint follow-through); and
- Inadequate remedial efforts (or complete lack thereof, particularly in terms of organizations currently working on this issue of disparities).
The curriculum and training EJS will develop seeks to:
- Increase awareness of the problem;
- Heighten cultural competence;
- Provide anti-biasing tools; and
- Assure continued education.
Background: Growing Elderly Population and More People of Color Entering Nursing Homes
Demographics: Increasing Senior Population
- Nationwide: the U.S. is experiencing a rapid growth in its older population. Over the next forty years, the number of people aged 65 and older is expected to more than double. The largest percentage increase will be among adults 85+—the group most likely to need long term care.
- California: the elderly population is projected to grow more than twice as fast as the rest of the population. The number of CA adults 65+ is expected to double by 2025—a larger growth rate than any other state and the U.S. overall. By 2060, the number is expected to nearly triple.
- Race: older (65+) populations of Blacks, Hispanics/Latinos, and Asians are growing more rapidly than the older population of whites.
More People of Color Relying on Nursing Homes
- Overall, fewer Americans are relying on nursing homes (NHs) as a source of long term care. NHs are considered a “last resort,” primarily reserved for the most frail, sick, and/or dependent older adults. Most seniors prefer to stay at home or something related (e.g., residential care/assisted living).
- While the total number of people entering NHs has been declining, the number of NH residents of color is increasing. The trend reflects what many have called a “white flight” from NHs: the number of white NH residents is decreasing at the same time that the number of Black, Hispanic, and Asian NH residents is increasing.
- Between 1999 and 2008, the number of white NH residents decreased by 10.2%. During the same period, the number of Black NH residents increased by 10.8% and the number of Hispanic and Asian residents grew by 54.9% and 54.1%.
- In 2000, Blacks used nursing homes at a rate 14% higher than whites.
- Economic inequality a driving factor: trends in long term care and the increasing reliance of people of color on NHs is directly and significantly correlated to accessibility and affordability. Overall, white seniors report higher incomes and access to financial support, making them much more likely to be able to afford better, more preferable care options (e.g., home and community-based alternatives). For example, Blacks are five times more likely to be poor in old age.
Disparities in Nursing Home Quality
People of Color Enter Lower-Tiered Nursing Homes
- Two-thirds of all Black nursing home residents reside in only 10% of all nursing homes.
- NH residents of color are four times more likely to reside in lower-tier facilities than are whites. 40% of all Black NH residents are in lower-tier NHs versus just 9% of all white NH residents. This disparity is seen in every state, including CA.
- NHs with a higher percentages of residents of color (particularly Blacks) have the most health-related deficiencies (i.e., health measure outcomes), are more likely to be understaffed, disproportionately rely on Medicaid funding, and are disproportionately located in the poorest counties. NHs with a higher proportion of Black residents also perform worse financially (likely linked to disproportionate reliance on Medicaid).
- 2007 Study: Black NH residents were 1.37 times more likely to be in a facility cited with a deficiency causing actual harm or immediate jeopardy to residents and 1.61 times more likely to be in a NH that was subsequently terminated from the Medicare and Medicaid programs.
- Percentage of residents of color in a NH is a statistically significant predictor of various negative health outcomes and substandard conditions. For example, simply having more Black residents in a nursing home increases the likelihood of resident health deficiencies.
- NH residents of color are more likely to reside in NHs located in urban areas and are significantly more likely to reside in NHs that are for-profit.
Specific Health Disparities
Once in NHs, residents of color face disparate health outcomes in the following areas: incidence and timing of pressure ulcers, use of restraints, depression treatment, end-of-life care and documentation, use of antipsychotic medication, immunizations (flu, etc.), pain management, toilet/bladder retraining, and diabetic and stroke medication.
- Both across and within NHs, there is a significant disparity between Black residents and all other racial/ethnic groups in the incidence and timing of pressure ulcer development.
- Higher rates of pressure ulcers are directly linked to nursing homes that disproportionately serve Black residents.
- In NHs with the highest concentrations of Black residents, residents all of races have at least a 30% increased risk-adjusted odds of pressure ulcers compared with residents in NHs caring for none or only a small percentage of Black residents.
- Disparities increase over time and persist even when common predictors and risk factors are controlled for, leading researchers to conclude that “something else” (i.e., medically unrelated) is going on.
Use of Restraints
- Black residents are more likely than white residents to be physically restrained (e.g., via bed rails, side rails, and trunk restraints), which is shown to put residents at a greater risk of death and significant physical or psychological harm.
- Multiple studies have found a statistically significant relationship between race and the use of any type of physical restraint. A 2004 survey of 1,500 U.S. nursing homes found that almost half of Black residents were restrained with some type of device, compared to only 38% of white residents. The odds of Black residents being restrained by any type of device were 1.406 times higher than the odds for white residents.
- Among NH residents diagnosed with depression, Blacks receive less treatment than white residents, even when controlling for education level and taking facility characteristics into account.
- Simply residing in a facility with a higher proportion of Black residents is associated with lower odds of depression treatment even after adjusting for facility resource constraints and socioeconomic factors.
- Disparities exist both between and within facilities. Facilities with more Medicaid enrollees, fewer high school graduates, or more Black residents provide less treatment. Although facilities serving low socioeconomic status clientele of color tend to provide less depression care overall, Blacks also receive less depression treatment than whites in the same NHs.
End-of-Life Care & Documentation
- Across various types of advance directives, Black, Hispanic, and Asian NH residents are significantly less likely to have documentation on file.
- White NH residents are significantly more likely than people of color to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%).
- Black nursing home residents are significantly less likely to use hospice and more likely to die in a hospital.
- 2014 Study: nationwide study on disparities in the receipt of preventative care services among NH residents found that white residents were more likely than Black residents to have pain management, scheduled toilet plan/bladder retraining, influenza vaccinations, and pneumococcal vaccination.
- Vaccination disparities are especially significant. Blacks are less likely to be vaccinated than whites within the same facility and are more likely to live in facilities with lower vaccination rates.
- Black and Hispanic diabetic NH residents are less likely to receive antidiabetic medications than non-Hispanic Whites.
- Asian/Pacific Islanders, Blacks, and Hispanics at risk for secondary stroke are less likely than white NH residents to receive anticoagulants.
Exacerbating Factors & Role of Implicit Bias (not NH-specific)
Communication and Patient-Centeredness
- When provider race does not match patient race, medical interactions have been found to be less patient-centered and less positive.
- Black and Hispanic patients are significantly more likely than whites to report poor communication with their care providers and significantly more likely to have providers who do not ask for their help in making treatment decisions. Patients of all racial groups (except whites) are more likely to report poor communication with nurses.
- Study: Clinician bias and stereotyping were directly linked to poorer visit communication and negative ratings of care, particularly among Black patients. Among physicians who exhibited greater implicit racial bias, Black patients were more likely to report not feeling respected, liking the physician less, and having less confidence in the physician during medical encounters. Clinician implicit racial bias was associated with verbal dominance, decreased positive affect, and poorer patient ratings of care. Racial stereotyping was associated with longer visits, slower clinician speech, and less patient centered care.
- Patients’ own biases and responses to caregiver bias have been shown to affect patients’ desire to seek care, and lack of trust in medical professionals—stemming experiences of discrimination and bias—has been linked to lower medication adherence.
- Black patients are systematically undertreated for pain, having been consistently shown to receive inferior and inadequate pain treatment compared to equally situated whites. Blacks are less likely to receive pain medication, and when they do, they receive less.
- Due to the subjectivity of pain and the absence of objective measurement tools, medical judgments related to pain are particularly vulnerable to physician bias. Multiple studies connecting disparate pain treatment and implicit bias have found that stereotypes can influence provider expectations about the pain experiences of others.
- 2012 Study: participants were shown photographs of Black and white subjects and asked to rate the amount of pain each target was experiencing in various situations (e.g., paper cut, shampoo in the eye, injection in arm, slamming hand in a car door, etc.). Across six different experiments, both Black and white participants’ pain ratings were significantly lower for Blacks than they were for whites in identical situations. When photographs were digitally altered to create racially ambiguous subjects, simply labeling an otherwise identical target as “Black” instead of “white” significantly lowered participants’ pain rating. There was also a significant connection between pain ratings and perceived levels of privilege/hardship: the less privileged the target seemed (participants overwhelmingly assumed that Black targets were less privileged and faced more hardships than white targets), the less participants thought the target would experience pain. In other words, participants associated hardship with physical toughness. The same was true with status, with the finding that people have a general stereotype about low-status people somehow being tougher. Researchers predicted that as long as Blacks are perceived to be low-status in society, their capacity for pain is likely to be underestimated.
- 2012 Study: review of archived NFL injury reports found that injured Black players were much more likely to be deemed able to play in subsequent games than white players with similar injuries.
Our brains are quicker and more naturally inclined to emulate empathic responses to pain experienced by those who look like us (i.e., in-group members rather than out-group members). We have slower and weaker empathic responses to pain when the person experiencing the pain is of a different race.
- Empathy is, at its root, a neurological reflex. Scientists have been able to pinpoint the area of our brain associated with empathy, the anterior cingulate cortex (ACC), which is the same area responsible for mediating first person experiences of pain.
- Empathic neurological responses largely occur on an implicit or automatic level, such that feelings of empathy occur more naturally in certain situations than others and can be influenced by various sociological factors—including shared common membership in a social category.
- Using functional magnetic resonance imaging (fMRI), several studies have monitored participants’ neural reactions to images of people experiencing painful stimulations. Across all races, the ACC responded quicker and stronger when the person in the image matched the race of the person viewing the image. Empathic neural responses decreased significantly when the race of the person experiencing pain was an out-group member.
- Although automated neurological responses don’t guarantee that we will react differently to other-race pain, researchers have concluded that our ability to empathize at least comes much more naturally when facing own-race rather than other-race members.
- At least one study has found that racial bias and stereotypes reduce empathic reactivity and sensory-motor resonance with other race pain.
Misc: Decision-Making and Feelings About Patients
Multiple studies have found that patient race and racial stereotyping may influence provider decision-making and providers’ feelings about their patients.
- Study: Physicians were less likely to refer female and Black “patients” for cardiac catheterization than male and white “patients” who presented identical symptoms of cardiac disease. Black women were significantly less likely to be referred than white men.
- Study: Although physicians reported no explicit preference for white versus Black patients or differences in perceived cooperativeness by race, screening for implicit preferences showed a strong preference for whites and implicit stereotypes of Blacks as less cooperative with medical procedures. As pro-white implicit bias increased, so did the likelihood of treating white patients but not Black patients with thrombolysis.
- Study: Male physicians prescribed twice the level of pain medication for white patients than for Black patients with identical symptoms. Female physicians prescribed higher doses for Black patients than for white patients, suggesting that male and female physicians may respond differently to gender and/or racial cues.
- Study: When primed with subliminal images of Black faces, physicians reacted more quickly for stereotypical diseases, indicating an implicit association of certain diseases with the Black race. While some diseases had genetic links to African Americans, others were conditions and social behaviors with no biological association (e.g., obesity, drug abuse), suggesting that diagnosis and treatment of Black patients may be biased regardless of practitioner intent.
- Study: Mental health professionals subliminally primed with Black stereotype-laden words were more likely to evaluate the same hypothetical patient (whose race was not identified) more negatively than when primed with neutral words.
- Study: In a survey of 842 patient encounters, researchers found a strong connection between patient race and socioeconomic status and physician perception and attitude towards patients. Even after patients’ income, education, and personality characteristics were taken into account, physicians rated Black patients as less intelligent, less educated, more likely to abuse drugs and alcohol, more likely to fail to comply with medical advice, more likely to lack social support, and less likely to participate in cardiac rehabilitation than white patients.
 Vincent & Velkoff (2010). Between 2010 and 2050, the number of Americans aged 65 and older is projected to grow from 40.2 million to 88.5 million.
 CA Health Care Almanac (2013).
 CDC website.
 California HealthCare Foundation report (2007).
 Feng et al. (2011). Between 2008 and 2050, the number of Black adults over 65 is expected to increase from 3.2 million to 9.9 million. Census Bureau; AoA.
 Feng et al. (2011). The NH population declined by roughly 6.1 percent between 1999 and 2008.
 Feng et al. (2011).
 Feng et al. (2011).
 Smith et al. (2007).
 In 2008, the median household income of families headed by Black persons aged 65+ was 20% less than the overall median ($35,025 compared to $44,188). The median personal income for Black men was $19,161 and $12,499 for Black women, compared with $25,503 and $14,559 overall. AoA (2008).
 Mor et al. (2004).
 Smith et al. (2007). For-profit NHs are more segregated than non-profit NHs.
 “Lower-tier” generally refers to facilities that are substandard, understaffed, and poorly funded. Low tier facilities are the most often cited for health-related deficiencies (e.g., serious bed sores and unnecessary use of restraints), employ significantly fewer RNs, NPs, and other well trained staff, and overwhelmingly rely on Medicaid funding (around 85% or more of residents of low-tier nursing homes are Medicaid recipients). Mor et al. (2004).
 Mor et al. (2004); Fennell, Feng, Clark, & Mor et al. (2010).
 E.g., pressure ulcers, physical restraints, inadequacy of pain control, and use of antipsychotic medication.
 Mor et al. 2004; Smith et al. 2007. Nursing staff levels have been shown to have a strong relationship to the quality of care received in hospitals and nursing homes. Institute of Medicine. Nursing Staffing in Hospitals and Nursing Homes: Is It Adequate? Washington, D.C.: National Academy Press (1996); Institute of Medicine. Improving the Quality of Long-Term Care. Washington, D.C.: National Academy Press (2001); Stanton, M.W. Hospital Nurse Staffing and Quality of Care. Research in Action 14. Washington, DC: Agency for Healthcare Research and Quality (2004).
 Blacks are 2.53 times more likely to be in a predominately Medicaid funded facility and only 0.35 times as likely to be located in facilities with a high proportion of private-pay residents. Smith et al. 2007.
 Smith et al. (2007).
 Chisholm et al. (2013).
 Smith et al. (2007).
 E.g., pressure ulcers (Bliss et al. 2014) and depression (Siegel et al. 2012).
 Luo et al. (2014). The concentration of minorities in for-profit facilities is significant, for example, because researchers have found that residing in a for-profit NH is a significant negative predictor of receiving preventative and palliative services.
 Bliss et al. (2014).
 Li et al. (2011); Bergstrom & Horn (2011); Cai, Mukamel, & Temkin-Greener (2010).
 Li et al. (2011).
 E.g., cognitive deficiencies, incontinence levels, nutrition, quality care deficiencies, comorbidity, bedfastness/transfer dependency, and region.
 Bliss et al. (2014); Baumgarten et al. (2004); Bergstrom et al. (2011).
 Cassie & Cassie (2013). In a systematic review of 25 studies, researchers found physical restraints to be associated with death by asphyxiation, loss of muscle strength, pressure ulcers, incontinence, contractures, fractures, chafing, thrombosis, aspiration, skin tears, and fecal impaction. Chaves et al. (2007). Physically restrained residents are also more likely to experience cognitive declines, decreased self-esteem and social engagement, and increased confusion, forgetfulness, depression, humiliation, fear, anger, agitation, anxiety, and resistance to care. Castle (2006); Chaves et al. (2007).
 Cassie & Cassie (2013); CDC 2004 National Nursing Home Survey.
 E.g., medicaid funding, staffing levels, socioeconomic status of residents, etc. Siegel et al. (2012).
 Siegel et al. (2012). Study looked at 42,901 nursing home residents from 1,492 facilities across five states. Among all residents identified as depressed (11%), Black residents were the least likely of any group to receive an antidepressant. Authors do note that disparities may in part reflect patient or family preferences (“In a study of primary care patients, Cooper et al. (2003) found that Blacks were less likely than Whites to find antidepressant treatment acceptable. They were less likely to believe that antidepressants could be effective, more likely to believe that antidepressants were addictive, and more likely to believe that prayer could heal depression.”).
 Siegel et al. (2012).
 Frahm, Brown, & Hyer (2012).
 Reynolds et al. (2008). (“To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care.”).
 Kwak, Haley, & Chiriboga (2008).
 Luo et al. (2014). Study controlled for patient need, health care system-related variables (e.g., payment source, characteristics of nursing home, location), and treatment preferences of patients. See also Li & Mukamel (2010).
 Luo et al. (2014); Cai, Feng, Fennell, & Mor (2011); Bardenheier et al. (2010).
 Cai, Feng, Fennell, & Mor (2011).
 Allsworth, Toppa, Palin, & Lapane (2005); Spooner et al. (2001).
 Christian, Lapane, & Toppa (2003); Quilliam & Lapane (2001).
 Johnson et al. (2004); Cooper et al. (2003). Multiple studies have found a connection between patient-centeredness and implicit bias among clinicians. Cooper et al. (2012); Penner et al. (2009); Blair et al. (2013).
 U.S. Dept. Health & Human Services report (2013). Poor communication has been identified as the principle reason for medical errors and is associated with behaviors that can threaten patient safety (e.g., misinterpretation and failure to report critical information). Communication, trust, and patient-centeredness—all areas where minorities report the greatest levels of dissatisfaction—have all been directly linked to improvements in patient health and care provision. Lange, Mager, & Andrews (2013).
 Cooper et al. 2012.
 Dovidio & Fiske (2012).
 Cuffee et al. (2013).
 Trawalter, Hoffman, & Waytz (2012); Bonham (2001); Drwecki et al. (2011); Green et al. (2003).
 Mathur et al. (2014); Wandner et al. (2012). Several studies have demonstrated that physician pain perception can differ greatly from patient pain ratings and influence decisions about diagnosis and treatment. E.g., physicians prescribe fewer analgesics for Blacks in emergency rooms despite similar estimates of pain.
 Trawalter, Hoffman, & Waytz (2012). Study screened for both explicit and implicit race-related attitudes in participants and found that neither moderated the effect, concluding that the bias in pain perception did not appear to be the result of racial prejudice per se.
 Trawalter, Hoffman, & Waytz (2012). Reports were based off of coaching staff and team medical personnel evaluations.
 Xu et al. (2009).
 Xu et al. (2009).
 Xu et al. (2009); Avenanti et al. (2010); Sessa et al. (2013).
 Xu et al. (2009); Sessa et al. (2013).
 Avenanti et al. (2010). Study used transcranial magnetic stimulation to monitor sensorimotor empathic brain responses to pain viewed in others. Both Black and white participants exhibited implicit but not explicit in-group preference. In both groups, viewing the pain of same-race models led to corticospinal inhibition (as if they were feeling the pain themselves), as did viewing the pain of a violet-colored (control) model. No such reaction occurred with the viewing of different-race models, with lack of empathy being the highest in participants with stronger implicit racial bias.
 Smedley, Stith, & Nelson (2003). Studies on the effect of clinician implicit bias on medical decisions in hypotheticals scenarios have produced mixed results. See, e.g., Sabin, Rivara, & Greenwald (2008); Sabin & Greenwald (2008); Haider et al. (2011).
 Schulman et al. (1999).
 Green et al. (2007). Overall, whites are up to twice as likely as Blacks to receive thrombolytic therapy for myocardial infarction.
 Weisse et al. (2001).
 Moskowitz, Stone, & Childs (2012).
 Abreu J. (1999).
 van Ryn and Burke (2000).