Is Social Work Prepared for Diversity in Hospice and Palliative Care?

Is Social Work Prepared for Diversity in Hospice and Palliative Care? Abstract The purpose of this article is to assess current and future trends in hospice and palliative care with the objective of informing culturally appropriate best practice for social work. Concern for the intersectionality of racial, ethnic, social, and other differences in end-of-life (EOL) care is imperative given the ever growing range of diversity characteristics among the increasing aging populations in the United States. A review of literature from the current decade that is pertinent to the profession contributes to the ability of social work to consider evidence and build agreement germane to EOL practice settings. Administrative reports, government data, academic literature, professional standards, and assessment tools contribute to the profession’s ability to work toward cultural competence and develop practice strategies for EOL care. The varied roles held by social workers across health care arenas provide a unique opportunity to promote cultural competence and advance best practice on all levels of work. cultural competence, diversity, end-of-life care, hospice, palliative care Before the start of the 21st century, 2020 was demarcated as a year for goal setting based on predictions and anticipated trends in attempts to properly prepare for the future. Now that 2020 is only a few years away, shedding all of its futuristic connotations, it is time to examine if and how aims for preparedness have been met. At present, efforts that have been made to plan for the future can be appraised on their ability to accommodate both realized changes and those on the horizon. Of particular interest are shifts in culture; since the 2000 U.S. Census there has been a great deal of attention to demographic trends and their role in predicting dramatic changes to the world in which we live (Perez & Hirschman, 2009). Many anticipated developments have already manifested completely or to some degree often evidenced by sweeping consequence. For example, significant impact is directly observable in the language we use to understand commonplace terms long engrained in our society. To illustrate, the term “minority” to denote the proportion of individuals of nondominant culture is currently statistically incorrect. This is evidenced in several states and has been inaccurate for many years in almost 50 metropolitan areas across the nation. It is estimated that by 2044 this misnomer will connote the nation as a whole (National Association of Social Workers [NASW], 2015a; U.S. Census Bureau, n.d.-a). Whether real or illusory, “minority” populations continue to bear plainly real racial and socioeconomic encumbrances of nondominant group membership. As a result, the oxymoron “majority minority” has become more widely used in our lexicon to represent statistical correctness while relegating nondominant groups of greater numbers to continued minority status. Actualized and mounting changes demand that professionals across disciplines and settings consider how demographic developments currently and imminently bear on readiness and efforts for the future. Any field of professional social work practice is appropriate for consideration. However, of particular interest is hospice and palliative care as aging populations are more likely to require such services and the aging demographic will continue to drastically increase in number (Bullock, 2011; Carson & Sabol, 2016; Cruz-Oliver et al., 2016; Doukas, 2014; Flores, Herman, Gates, & Brown, 2016; Ollove, 2016; U.S. Census Bureau, n.d.-a). Due to varied roles held by social workers within these settings, the profession is well positioned to promote culturally competent best practice across all levels of work (Agnew, Manktelow, Haynes, & Jones, 2011; Bosma, Johnston, et al., 2010; Bullock, 2011; Henry et al., 2015; Murty, Sanders, & Stensland, 2015; Watts, 2013; Yang & Mahon, 2012). Yet, the ever changing demographics of clients, caregivers, and families who may benefit from hospice and palliative care present unique challenges for culturally competent social work practice. Although medical conditions are often the most conspicuous concern, a range of cultural dimensions require additional attention. This is imperative as populations who have been traditionally underserved by hospice and palliative care are now seeking this care. Other cultures may require increased engagement and recruitment efforts. Understanding current and future trends in this field of practice will bring social work professionals closer to developing and applying culturally competent best practice strategies. A current review of literature pertinent to the profession contributes evidence that may be used to improve end-of-life (EOL) practice. Diversity and Cultural Competence NASW’s (2015b),Standards and Indicators for Cultural Competence in Social Work Practice upholds that “culturally competent social workers need to know the limitations and strengths of current theories, processes, and practice models, and which have specific applicability and relevance to the service needs of culturally, religiously, and spiritually multicultural clientele” (p. 26). However, achieving cultural competence is somewhat limited by the amount of literature that examines the role of various diversity factors across social work fields of practice. Although hospice and palliative care settings benefit from research on some areas of difference, many diversity subjects are not well represented in the literature (Bullock, 2011; Doorenbos et al., 2010; LoPresti, Dement, & Gold, 2016; NASW, 2015b; Schim & Doorenbos, 2010; Witten, 2014). Furthermore, government and private organizations who collect and report characteristics of those receiving hospice and palliative care often use narrow response categories that fail to capture the breadth and depth of diversity among this population (Schim & Doorenbos, 2010; Witten, 2014). The concept of cultural competence must appropriately parallel current and future demographic trends by expanding its meaning to include a broad definition of culture. It is not enough to consider culture relegated to outdated binary concepts such as African American or Hispanic in an era when a growing majority are a unique combination of characteristics that cannot be adequately captured in a checkbox. To be truly culturally competent, a host of diversity characteristics far beyond race and socioeconomic status (SES) must be considered. Therefore, considering diversity on a continuum is more realistic and reflective of the actual people with whom social workers engage. A starting point would be to include continuums of race; SES; age; religion; spirituality; sexual orientation; gender identity and expression; national origin; offender and incarceration status; refugee and immigrant status; veteran status; urban versus rural location; health behaviors; health conditions including diagnosis and prognosis; various developmental, learning, physical, and psychological abilities by diagnosis and functional level; family composition and dynamics; and trauma history. Broadening the concepts of culture and diversity and viewing these abstractions as a range of possible characteristics specific to each person is daunting to consider. Cultural competence can easily be perceived as overwhelming and impossible if presented with a large range of client descriptors. However, if cultural competence is considered as an ongoing area of professional development, rather than a skill that is learned once, then this goal becomes achievable. NASW offers an operational definition of cultural competence that reflects fluidity, intersectionality, synthesis, reflection, and an other-oriented perspective (NASW, 2015a, 2015b). This definition demonstrates that cultural competence is a moving target, a lifelong process, and a professional standard to undertake. Furthermore, expectations of cultural competence have long been rooted in the profession within NASW’s (2017),Code of Ethics and the person-in-environment framework (NASW, 2015a, 2015b); in essence, this endeavor is quite familiar yet constantly evolving to meet challenges of the time. Hospice and Palliative Care How diversity is defined and how social workers respond with cultural competence does not change from one setting to another; however, some factors may emerge as more significant than others due to setting. As expected, health behaviors, medical conditions, and diagnosis and prognoses may be the most obvious presenting concerns often taking precedence in hospice and palliative care settings. However, the importance of diversity should not be underestimated as these characteristics can significantly affect health-related concerns, convey how some populations respond to EOL care, and indicate underrepresented groups in this setting (Bosma, Apland, & Kazanjian, 2010; Bosma, Johnston, et al., 2010; Bullock, 2011; Cagle, Pek, Clifford, Guralnik, & Zimmerman, 2015; Cruz-Oliver et al., 2016; Demiris, Wittenberg-Lyles, Parker Oliver, & Washington, 2011; Doorenbos et al., 2010; Drisdom, 2013; LoPresti et al., 2016; Lynch, 2013; Moore, 2015; Murty et al., 2015; Schim & Doorenbos, 2010; Witten, 2014). Definitions Although herein the terms “hospice” and “palliative care” are used collectively to represent an array of EOL care options and distinctly when required for accuracy, it is important to clarify each individually. Although these terms often intersect, they have discrete differences. Palliative care most often refers to an array of services offered to individuals who have a serious and possibly life-threatening illness with the aim of relieving symptoms and side effects; these services are not restricted to those who are dying. Rather, palliative care addresses all areas of well-being with the overarching goal of improving an individual’s quality of life. These services are most often covered, to varying degrees, by health insurance including Medicare and Medicaid. While receiving such services, individuals may also be seeking curative and life-prolonging care (National Consensus Project, n.d.). Hospice care comprises services provided in various settings to those who are anticipated to live six months or less and are not receiving life-prolonging or curative treatments. Those accepting hospice care also receive palliative care including support for individual patients as well as their caregivers, which is sustained after the death of a loved one (National Hospice and Palliative Care Organization [NHPCO], n.d.). In essence, all who receive hospice care also benefit from palliative care while not all who receive palliative care are eligible for hospice designation as their prognosis and use of curative services may preclude it. The majority of hospice care services are paid for through the Medicare Hospice Benefit; this accounts for slightly over 80 percent of all hospice reimbursements. A Medicaid Hospice Benefit is available in many states for those who are eligible; approximately 5 percent of hospice costs are paid in this manner. Last, private insurance accounts for about 8 percent of hospice recompense (Centers for Medicare & Medicaid Services [CMS], n.d.). Herein, both hospice and palliative care are explored to inform culturally competent best practice in the overarching area of EOL services provided by social workers in various settings with the understanding that palliative care occurs as a part of hospice care. Demographics Every state across the nation provides hospice care with varying availability. Since the earliest hospice program in 1974, numbers have increased to over 6,000 programs serving as many as 1.7 million patients and their families annually constituting the inclusion of hospice care in approximately 44.6 percent of all deaths (NHPCO, 2015). Primary medical diagnosis of those receiving hospice care changes with incidence of terminal disease; 36.6 percent are cancer diagnoses, whereas 63.4 percent of diagnoses are non–cancer related, with dementia, heart disease, lung disease, and stroke or coma constituting the highest four respectively (NHPCO, 2015). Hospice patients receive care in a variety of settings that are intended to reflect a home environment; 2014 data reveal that 58.9 percent of those receiving hospice services do so in their place of residence, which may be a private home or long-term care setting; the remainder receive care in a hospice-specific facility or hospital. Demographic characteristics of hospice patients in 2014 as per NHPCO reveal the following composition: 53.7 percent female; 46.3 percent male; 84 percent age 65 or older; 41.1 percent age 85 or older; 7.1 percent Hispanic or Latino origin (reported separately from race as per U.S. Census standards); 76 percent Caucasian; 13.1 percent multiracial or other race; 7.6 percent African American; 3.1 percent Asian, Hawaiian, or other Pacific Islander; and 0.3 percent American Indian or Alaskan Native (NHPCO, 2015). When compared with U.S. Census Bureau (n.d.-a, n.d.-b) reports, it is easy to see racial disparities among those served. For example, 16.3 percent of the nation’s population is Hispanic or Latino (U.S. Census Bureau, n.d.-a), yet that group has a hospice usage rate of 7.1 percent among the 44.6 percent of all hospice users. In part, differences can be explained by cultural preferences that are at odds with how hospice services are provided. Specifically, Hispanic populations tend to favor family-centered decision making and indirect communication about the dying process so as not to cause harm, whereas hospice services often use a patient-centered approach and include frank discussions of death (Cruz-Oliver et al., 2016). The focus is to inform culturally competent best practice by understanding current and future trends among hospice and palliative care constituents; however, as available demographic data demonstrate, the complexity and scope of diversity fails to be adequately captured. Although this information provides a general sense of those served, it is lacking in detail. For instance, gender response categories are binary in nature, limited to indicating one choice of either male or female. The simple addition of “other” or “check all that apply” options would significantly improve applicability and inclusion. In a world where Facebook has offered users 71 gender options since 2014 (Wong, 2016), it seems that principal data sources regarding hospice and palliative care could be more inclusive, current, and rigorous. The mismatch between diversity characteristics captured by data and the actual cultural differences of those receiving services has been noted as a concern (Schim & Doorenbos, 2010; Witten, 2014). The consequences threaten to further solidify incorrect assumptions, neglect multicultural identities and acculturation, and discount varied levels of importance that individuals may place on their culture (Bosma, Apland, & Kazanjian, 2010). Data Sources Data and demographic information on those receiving palliative and hospice care in the United States have many sources, some of which are federally mandated and others that are not. Recently, new requirements for the former were initiated by the Patient Protection and Affordable Care Act of 2010 (P.L. 111-148), which requires participation in the Hospice Quality Reporting Program (HQRP) comprising two compulsory measures developed by CMS. These methods include the Hospice Item Set (HIS) for patient-level data compiled by service providers and the Consumer Assessment of Healthcare Providers and Systems (CAHPS) administered to families or caregivers after patient death to assess their experiences with care (CMS, n.d.). Both of HQRP’s measures are limited in their ability to capture diversity factors. For example, both the HIS and CAHPS contain one item titled “Race/Ethnicity” that comprises six discrete categories wherein “Hispanic or Latino” is an option; this shows less sensitivity than the U.S. Census metric in which Hispanic original is asked separately to distinguish between heritage or nationality versus race (CMS, n.d.). As referenced previously, a primary resource for voluntary hospice and palliative care data is the NHPCO, which is the principal professional nonprofit membership group in the country promoting quality of life through excellence in EOL care. NHPCO collects data through its National Data Set survey, which covers a variety of items related to hospice care including a limited amount of demographic items reported earlier (NHPCO, 2015). However, an overall lack of information persists about individuals receiving care who can be characterized by diversity factors outside of those cited. Unknown numbers of individuals possessing attributes that may vitally affect hospice and palliative care efforts remain completely invisible due to the lack of inclusiveness in large-scale data sources. This information does not appear to exist within reporting requirements and academic literature alike (Hasnain-Wynia & Baker, 2006; Schim & Doorenbos, 2010; Weech-Maldonado et al., 2012; Witten, 2014). Best practice suggests that systematically collecting data using culturally sensitive instruments can reduce health disparities and ensure patient-centered care (Hasnain-Wynia & Baker, 2006; Weech-Maldonado et al., 2012). Many culturally sensitive assessment models exist and are used with differing prevalence; assessment tools exclusively pertinent to distinct populations are also available to a varying degree (Hasnain-Wynia & Baker, 2006; Schim & Doorenbos, 2010; Weech-Maldonado et al., 2012; Witten, 2014). Among more globally applicable assessment models, two are prominent. First, the ABCDE Cultural Assessment Model (Kagawa-Singer & Blackwell, 2001) assesses levels of cultural adherence in attempts to improve communication and decrease stereotyping through five dimensions: attitudes, beliefs, context, decision-making style, and environment. The second multifaceted assessment is the Transcultural Assessment Model (Giger & Davidhizar, 2002), which was developed almost 30 years ago but has been updated several times to ensure its continued applicability. This model focuses on uniqueness of the individual and assesses dimensions of communication, space, social organization, time, environmental control, and biological variations. Overall, the use of comprehensive assessments that capture a range of diversity factors and their perceived importance can improve service delivery and patient outcomes (Bosma, Apland, & Kazanjian, 2010; Cruz-Oliver et al., 2016; LoPresti et al., 2016). The use of more sensitive assessments and the resulting data can help social work professionals develop a basis for best practice that is cognizant of the complex cultural identities of those served in EOL settings. Likewise, more research specific to hospice and palliative care is needed to undergird this area of professional social work practice. Research is needed to inform why and how culture is important in relation to family and patient engagement, assessment, service delivery, intervention outcomes, and overall satisfaction with services provided. Both inclusive assessment tools and increased research are paramount to developing best practice for EOL care. Trends Although current national data provide limited insight, support for the importance of developing culturally competent best practice in hospice and palliative care settings is evident in academic literature. Material that explores cultural competence within this area of practice is dwarfed by articles focusing on the experiences of specific populations by diversity factor or diagnosis. Yet, literature from a broader perspective is useful in establishing a sense of the knowledge base within the subject matter and provides a foundation for more narrowly focused contributions. Of particular usefulness is a value-based model that provides a wide-ranging approach to diversity considerations in EOL care. This model suggests that understanding cultural value distinctions on a continuum of individualism to collectivism, independence to interdependence, and self-reliance to interconnectedness may be at the crux of differences seen across populations and indicators. To illustrate, white Americans and African Americans tend to emerge on opposite ends of the spectrum on each of these values. These differences affect the likelihood of completing advance directives, family inclusiveness in decision making, and overall view of hospice care (Bullock, 2011). Therefore, value orientations can play an important role in informing best practice in hospice and palliative care settings. This is supported by findings that indicate care choices during EOL are often more dependent on ethnicity and culture rather than other demographic characteristics such as age and SES (Bosma, Apland, & Kazanjian, 2010). The impact of culture is shown to go beyond medical decision making to also influence verbal interactions, reactions to medical conditions, and affective characteristics (Bosma, Apland, & Kazanjian, 2010). Likewise, service delivery is a major area of consideration; inattentiveness to patient’s cultural factors is shown to result in substandard levels of hospice and palliative care treatment, unequal access to services, disproportionate usage rates, and a wide range of other disparate outcomes (Bosma, Apland, & Kazanjian, 2010; Cruz-Oliver et al., 2016; LoPresti et al., 2016). However, data are not available in this regard on all ethnic and cultural groups; in particular, indigenous populations are greatly underrepresented in the literature (Moore, 2015). Not surprisingly, access and utilization differences have the ability to affect health conditions, pain management, and location of death (Bosma, Apland, & Kazanjian, 2010); collectively, these consequences may negate the primary goals of palliative care. These findings are especially impactful as care providers, patients, and their families are likely to encounter heightened diversity distinctions at the end of the life cycle due to the cultural significance of mortality (Agnew et al., 2011; Bosma, Apland, & Kazanjian, 2010; Bullock, 2011). Whereas some diverse populations are represented in current literature, others are not. Regardless, findings specific to particular populations in this decade have increased awareness of diversity differences among those receiving hospice and palliative care and those who underuse these services. To illustrate, a brief review of current literature that focuses on the experiences of specific populations by diversity factor follows. Although a good deal of research and program effort has emerged to increase cultural competence with African Americans, this population remains the least likely to use hospice services even though a greater need for such is noted. Among the reasons for these findings are a general lack of adequate knowledge about services, values that oppose the nature of services, and subsequent preference for aggressive curative treatments (LoPresti et al., 2016). Consequently, these outcomes perpetuate one another given that a lack of accurate information about varied EOL options can leave African American populations with less support and the inability to make informed choices for care (Drisdom, 2013). Due to value orientations, the terms “hospice” and “palliative” have become problematic as they have grown to connote ideas that may be contrary to individual beliefs. For instance, “hospice” can be internalized as “giving up” (Drisdom, 2013). Therefore, best practice suggests that the use of different terminology may help to negate some racial disparities. Hispanic Americans and African Americans share some similarities among hospice indicators in relation to value distinctions and religious and spiritual beliefs. For example, both groups are less likely than others to complete advance directive documents for religious reasons (LoPresti et al., 2016). A good deal of current literature examines the experiences of Hispanic populations; however, diversity within these Hispanic populations is not addressed. Regardless, findings indicate that Hispanic populations experience low rates of service usage and are less likely to experience “good death,” which includes features such as having one’s wishes followed, service provider ability to manage pain and reduce stress and anxiety, attention to nonmedical needs, active provider involvement, possessing accurate knowledge, and perceiving compassion (Cagle et al., 2015). In response to these shortcomings, support for best practice can be found in various intervention models. For example, to better support a good death, implementation of culturally sensitive case-based intervention shows improvement in the level of knowledge and overall attitudes about hospice and palliative care services (Cruz-Oliver et al., 2016). Similarly, the well-being of Hispanic caregivers shows improvement through a psychoeducational problem-solving skills intervention that supports collectivistic cultural values (Demiris et al., 2011). Encouraging a broadening of diversity characteristics outside of ethnic and racial factors, there is some limited literature concerning populations that are now likely to enter hospice and palliative care settings in higher numbers or perhaps for the first time. Among these are methadone patients. At this time, patients entering methadone programs are more likely to be between 50 and 70 years of age than ever before; this trend is expected to increase and requires increased attention and culturally competent responses. Significant concerns that affect EOL care for this population include a host of progressively life-threatening comorbid medical conditions. Culturally competent best practice among this group calls attention to treatment planning that promotes not only health management and quality of life, but also a biopsychosocial approach that addresses a multitude of problems related to opioid dependence through a palliative care philosophy (Doukas, 2014). Prison inmates in the United States who receive hospice and palliative care services present new challenges for social workers and the correctional facilities where they are delivered. Currently, incarcerated individuals over the age of 55, which is considered elderly as this population is clinically10 years ahead of those not incarcerated, constitute the fastest growing demographic group within the nation’s prison systems (Supiano, Cloyes, & Berry, 2014). By 2030 it is estimated that individuals over 55 years of age will comprise one-third of all incarcerated people (Osborne Association, 2014). Data updated on June 25, 2016, by the Federal Bureau of Prisons estimate that 19,683 inmates (10.2 percent) in federal prisons are over age 55. State data differ greatly and are not as current; as of 2013, 131,500 or 10 percent of all inmates of state prison systems were age 55 or over (Carson & Sabol, 2016). However, some states such as Virginia report that 20 percent of their state inmates are 55 or over (Ollove, 2016). Although most states are burdened by the cost of providing services related to aging, they vary considerably as to the manner in which they choose to meet their inmates’ needs. Some have instituted “compassionate release” or “geriatric conditional release” programs where state laws allow; others provide aging and EOL care within their correctional facilities. This setting presents best practice challenges related to strict boundary structures that do not match well with the fundamental tenets of hospice and palliative care (Carson & Sabol, 2016). Social workers delivering services in prison settings are confronted with the need to support patient and worker relationships appropriate for the work at hand, while carefully negotiating professionalism within a multidisciplinary team (Supiano et al., 2014). Individuals who identify as transgender express worry over their EOL prospects yet are poorly equipped for these considerations due to poor relationships with health care systems marred by discriminatory and often traumatizing practices (Witten, 2014). Overall, this population continues to receive little positive public attention, remain underrepresented among research studies, experience disparate medical care, and endure discrimination. A simple Web search of “transgender and hospice” surprisingly delivers no applicable results. Nonetheless, knowledge about these individuals would be invaluable for hospice and palliative care settings based on population estimates alone. For example, approximately 1.4 million people in the United States identify as transgender (Flores et al., 2016), yet there is little research about this population as they age or around EOL issues (Witten, 2014). Furthermore, long-standing and far-reaching marginalization experienced by transgender individuals results in trauma reactions to various health care and service providers, which further challenge the provision of appropriate hospice and palliative care services (Witten, 2014). Although research about transgender EOL concerns is lacking, a large study of lesbian, gay, bisexual, and transgender older adults may shed some light on the topic. Study findings among this population indicate that 44 percent live alone compared with 18 percent of the general population; over 50 percent report the loss of close personal relationships due to gender identity; and, perhaps most striking, 48 percent depression rates are reported compared with 5 percent among older adult heterosexuals (Fredriksen-Goldsen, Kim, & Goldsen, 2011). It is suggested that increased cultural competence is greatly needed for successful work with transgender populations later in life; areas for increased attention to best practice is suggested at all levels including practitioners, agencies, facilities, religious and spiritual groups, and legal consult (Witten, 2014). Last, rural geographic residence of those seeking EOL care bring distinct challenges to service provision and outcomes for patients and families. In these settings, proximal access to adequate hospice and palliative care services are of concern as location can affect the amount of services available, shortages of professionals to provide various services, the ability of health care providers to facilitate quick referrals and admissions, capacity to attract and retain professionals with appropriate educational backgrounds and training, and presenting cultural differences particular to rural settings. Overall, rural areas have fewer hospice providers resulting in potentially greater proximal distances for patients, caregivers, families, and provider staff to negotiate. Greater distances, coupled with less available public transportation, can often be a significant barrier to services. Best practice recommendations look to novel hospice and palliative care delivery models such as telehealth, provider training, and changes to Medicare Hospice Benefits, which can improve EOL care in rural areas (Lynch, 2013). Directions for Social Work The importance of culturally competent best practice in hospice and palliative care settings is far-reaching given the ever-growing range of diversity characteristics and a marked increase of aging populations in the United States. The administrative reports, government data, academic literature, professional standards, and assessment tools discussed are a starting point to advance culturally competent practice guidelines for EOL care. However, this goal remains challenging because the numbers and needs of individuals possessing particular diversity characteristics remain largely unknown. Although pertinent literature identified numerous shortcomings, strategies to develop empirically supported culturally competent practices are suggested. NASW Standards and Indicators for Cultural Competence in Social Work Practice (2015b) and NASW Standards for Palliative and End of Life Care (2004) provide a foundation for appreciating the intersectionality of diversity factors in the context of EOL settings. This is a good place to start to formulate directions for the future as these standards bear on the development of best practice. Specifically, NASW (2004) cautions that “culture influences individuals’ and families’ experience as well as the experience of the practitioner and institution. Social workers should consider culture in practice settings involving palliative and end of life care” (p. 26). This points to the importance of understanding the interdependent and overlapping nature of multifaceted cultural dimensions and their impact on various EOL concerns as experienced by each individual and family member. It is further suggested that practice competence can help to properly prepare professionals for individualized client-centered care that can more effectively and positively affect psychological distress, pain, and the dying process for both individuals and families. Recommendations for practitioners include continuing education and training, specialization and certification programs, engagement in research, and appropriate use of supervision and community experts; support from all available resources is needed to keep up with the demands of this field of work (NASW, 2004). In sum, recommendations for more accurate and inclusive data, the use of professional standards, and practitioner knowledge and skill acquisition place the onus on social workers to achieve cultural competence. However, awareness and familiarity with various areas of difference may not adequately prepare social workers for diversity in hospice and palliative care. The cultural competence approach lacks attention to reciprocal personal and professional reflection and cognizance of the complex structural forces that form client experiences. To advance practice, a cultural humility approach offers social workers a deeper way to understand and respond to cultural differences of others as well as themselves. Simply defined, cultural humility is a “process of committing to an ongoing relationship with patients, communities, and colleagues that requires humility as individuals continually engage in self-reflection and self-critique” (Fisher-Borne, Montana Cain, & Martin, 2015, p. 171). Applied to diversity in the context of EOL care, cultural humility can ease the burden on social workers to attain competence as a discrete goal by instead actively participating in a continual process with clients, constituencies and institutions, and within themselves. References Agnew, A., Manktelow, R., Haynes, T., & Jones, L. ( 2011). Bereavement assessment practice in hospice settings: Challenges for palliative care social workers. British Journal of Social Work,  41( 1), 111– 130. Google Scholar CrossRef Search ADS   Bosma, H., Apland, L., & Kazanjian, A. ( 2010). Cultural conceptualizations of hospice palliative care: More similarities than differences. Palliative Medicine,  24, 510– 522. doi:10.1177/0269216309351380 Google Scholar CrossRef Search ADS   Bosma, H., Johnston, M., Cadell, S., Wainwright, W., Abernethy, N., Feron, A., et al.  . ( 2010). Creating social work competencies for practice in hospice palliative care. Palliative Medicine,  24( 1), 79– 87. doi:10.1177/0269216309346596 Google Scholar CrossRef Search ADS   Bullock, K. ( 2011). The influence of culture on end-of-life decision making. Journal of Social Work in End-of-Life & Palliative Care,  7( 1), 83– 98. doi:10.1080/15524256.2011.548048 Google Scholar CrossRef Search ADS   Cagle, J. G., Pek, J., Clifford, M., Guralnik, J., & Zimmerman, S. ( 2015). Correlates of a good death and the impact of hospice involvement: Findings from the National Survey of Households Affected by Cancer. Supportive Care in Cancer,  23, 809– 818. doi:10.1007/s00520-014-2404-z Google Scholar CrossRef Search ADS   Carson, E. A., & Sabol, W. J. ( 2016). Aging of the state prison population, (1993-2013) (NCJ 248766). Retrieved from http://www.bjs.gov/index.cfm?ty=pbdetail&iid=5602 Centers for Medicare & Medicaid Services. (n.d.). Hospice quality reporting. Retrieved from https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Hospice-Quality-Reporting/ Cruz-Oliver, D. M., Malmstrom, T. K., Fernández, N., Parikh, M., García, J., & Sanchez-Reilly, S. ( 2016). Education intervention “Caregivers Like Me” for Latino family caregivers improved attitudes toward professional assistance at end-of-life care. American Journal of Hospice & Palliative Medicine,  33, 527– 536. doi:10.1177/1049909115584315 Google Scholar CrossRef Search ADS   Demiris, G., Wittenberg-Lyles, E., Parker Oliver, D., & Washington, K. ( 2011). Delivering a psycho-educational intervention to Hispanic hospice informal caregivers. Palliative Medicine,  25, 185– 186. doi:10.1177/0269216310380765 Google Scholar CrossRef Search ADS   Doorenbos, A. Z., Lindhorst, T., Schim, S. M., Van Schaik, E., Demiris, G., Wechkin, H. A., & Curtis, J. R. ( 2010). Development of a Web-based educational intervention to improve cross-cultural communication among hospice providers. Journal of Social Work in End-of-Life & Palliative Care,  6( 3–4), 236– 255. doi:10.1080/15524256.2010.529022 Google Scholar CrossRef Search ADS   Doukas, N. ( 2014). Are methadone counselors properly equipped to meet the palliative care needs of older adults in methadone maintenance treatment? Implications for training. Journal of Social Work in End-of-Life & Palliative Care,  10( 2), 186– 204. doi:10.1080/15524256.2014.906370 Google Scholar CrossRef Search ADS   Drisdom, S. ( 2013). Barriers to using palliative care: Insight into African American culture. Clinical Journal of Oncology Nursing,  17, 376– 380. doi:10.1188/13.CJON.376-380 Google Scholar CrossRef Search ADS   Fisher-Borne, M., Montana Cain, J., & Martin, S. L. ( 2015). From mastery to accountability: Cultural humility as an alternative to cultural competence. Social Work Education,  24( 2), 165– 181. Google Scholar CrossRef Search ADS   Flores, A. R., Herman, J. L., Gates, G. J., & Brown, T.N.T. ( 2016). How many adults identify as transgender in the United States? Retrieved from http://williamsinstitute.law.ucla.edu Fredriksen-Goldsen, K. I., Kim, H. J., & Goldsen, J. ( 2011). The health report: Resilience and disparities among lesbian, gay, bisexual and transgender older adults—Preliminary findings . Seattle: University of Washington, Institute for Multigenerational Health. Giger, J. N., & Davidhizar, R. ( 2002). The Giger and Davidhizar Transcultural Assessment Model. Journal of Transcultural Nursing,  13( 3), 185– 188. Google Scholar CrossRef Search ADS   Hasnain-Wynia, R., & Baker, D. W. ( 2006). Obtaining data on patient race, ethnicity, and primary language in health care organizations: Current challenges and proposed solutions. Health Services Research,  41( 4, Pt. 1), 1501– 1518. Henry, B., Lam, M., Chow, R., Chiu, L., Chow, S., Chow, E., et al.  . ( 2015). Social work in end-of-life care: A review of the most highly cited papers. Journal of Pain Management,  8, 331– 338. Kagawa-Singer, M., & Blackwell, L. J. ( 2001). Negotiating cross-cultural issues at the end of life. JAMA,  286, 2993– 3001. Google Scholar CrossRef Search ADS   LoPresti, M. A., Dement, F., & Gold, H. T. ( 2016). End-of-life care for people with cancer from ethnic minority groups. American Journal of Hospice & Palliative Medicine,  33, 291– 305. doi:10.1177/1049909114565658 Google Scholar CrossRef Search ADS   Lynch, S. ( 2013). Hospice and palliative care access issues in rural areas. American Journal of Hospice & Palliative Medicine,  30, 172– 177. doi:10.1177/1049909112444592 Google Scholar CrossRef Search ADS   Moore, R. M. ( 2015). Appreciating cultural dimensions and connections in hospice care. Journal of Social Work in End-of-Life & Palliative Care,  11( 1), 6– 10. doi:10.1080/15524256.2015.1021069 Google Scholar CrossRef Search ADS   Murty, S. A., Sanders, S., & Stensland, M. ( 2015). End-of-life care as a field of practice in the social work curriculum. Journal of Social Work in End-of-Life & Palliative Care,  11( 1), 11– 26. doi:10.1080/15524256.2015.1021071 Google Scholar CrossRef Search ADS   National Association of Social Workers. ( 2004). NASW standards for palliative and end-of-life care . Washington, DC: Author. National Association of Social Workers. ( 2015a). Social work speaks: National Association of Social Workers policy statements 2015–2017  ( 10th ed.). Washington, DC: Author. National Association of Social Workers. ( 2015b). Standards and indicators for cultural competence in social work practice . Washington, DC: Author. National Association of Social Workers. ( 2017). Code of ethics of the National Association of Social Workers . Washington, DC: Author. National Consensus Project. (n.d.). What is palliative care?  Retrieved from http://www.nationalconsensusproject.org National Hospice and Palliative Care Organization. ( 2015). Hospice care in America, 2015 edition. Retrieved from http://www.nhpco.org/sites/default/files/public/Statistics_Research/2015 National Hospice and Palliative Care Organization. (n.d.). Hospice care. Retrieved from https://www.nhpco.org/about/hospice-care Ollove, M. ( 2016). Elderly inmates burden state prisons. Retrieved from http://www.pewtrusts.org/en/research-andanalysis/blogs/stateline/2016/03/17/elderly-inmates-burden-state-prisons Osborne Association. ( 2014). The high cost of low risk: The crisis of America’s aging prison population. Retrieved from http://www.osborneny.org Patient Protection and Affordable Care Act of 2010, P.L. 111-148, 124 Stat. 119 (Mar. 23, 2010). Perez, A. D., & Hirschman, C. ( 2009). The changing racial and ethnic composition of the US population: Emerging American identities. Population and Development Review,  3( 1), 1– 51. Google Scholar CrossRef Search ADS   Schim, S. M., & Doorenbos, A. Z. ( 2010). A three-dimensional model of cultural congruence: Framework for intervention. Journal of Social Work in End-of-Life & Palliative Care,  6( 3–4), 256– 270. doi:10.1080/15524256.2010.529023 Google Scholar CrossRef Search ADS   Supiano, K. P., Cloyes, K. G., & Berry, P. H. ( 2014). The grief experience of prison inmate hospice volunteer caregivers. Journal of Social Work in End-of-Life & Palliative Care,  10( 1), 80– 94. doi:10.1080/15524256.2013.877866 Google Scholar CrossRef Search ADS   U.S. Census Bureau. (n.d.-a). New Census Bureau report analyzes U.S. population projections. Retrieved from http://www.census.gov/newsroom/press-releases/2015/cb15-tps16.html U.S. Census Bureau. (n.d.-b). QuickFacts. Retrieved from https://www.census.gov/quickfacts/table Watts, J. H. ( 2013). Exploring the ‘social’ of social work in palliative care: Working with diversity. Illness, Crisis, & Loss,  21( 4), 281– 295. doi:10.2190/IL.21.4.b Google Scholar CrossRef Search ADS   Weech-Maldonado, R., Carle, A., Weidmer, B., Hurtado, M., Ngo-Metzger, Q., & Hays, R. D. ( 2012). The Consumer Assessment of Healthcare Providers and Systems (CAHPS) cultural competence (CC) item set. Medical Care,  50( 9, Suppl. 2), S22– S31. doi:10.1097/MLR.0b013e318263134b Google Scholar CrossRef Search ADS   Witten, T. M. ( 2014). End of life, chronic illness, and trans-identities. Journal of Social Work in End-of-Life & Palliative Care,  10, 34– 58. doi:10.1080/15524256.2013.877864 Google Scholar CrossRef Search ADS   Wong, C. M. ( 2016). Facebook introduces gender free-form field for users. Queer Voices. Retrieved from http://www.huffingtonpost.com Yang, Y. T., & Mahon, M. M. ( 2012). Palliative care for the terminally ill in America: The consideration of QALYs, costs, and ethical issues. Medicine, Health Care, and Philosophy,  15, 411– 416. doi:10.1007/s11019-011-9364-6 Google Scholar CrossRef Search ADS   © 2017 National Association of Social Workers http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Health & Social Work Oxford University Press

Is Social Work Prepared for Diversity in Hospice and Palliative Care?

Loading next page...
 
/lp/ou_press/is-social-work-prepared-for-diversity-in-hospice-and-palliative-care-upXrnFc7gZ
Publisher
Oxford University Press
Copyright
© 2017 National Association of Social Workers
ISSN
0360-7283
eISSN
1545-6854
D.O.I.
10.1093/hsw/hlx048
Publisher site
See Article on Publisher Site

Abstract

Abstract The purpose of this article is to assess current and future trends in hospice and palliative care with the objective of informing culturally appropriate best practice for social work. Concern for the intersectionality of racial, ethnic, social, and other differences in end-of-life (EOL) care is imperative given the ever growing range of diversity characteristics among the increasing aging populations in the United States. A review of literature from the current decade that is pertinent to the profession contributes to the ability of social work to consider evidence and build agreement germane to EOL practice settings. Administrative reports, government data, academic literature, professional standards, and assessment tools contribute to the profession’s ability to work toward cultural competence and develop practice strategies for EOL care. The varied roles held by social workers across health care arenas provide a unique opportunity to promote cultural competence and advance best practice on all levels of work. cultural competence, diversity, end-of-life care, hospice, palliative care Before the start of the 21st century, 2020 was demarcated as a year for goal setting based on predictions and anticipated trends in attempts to properly prepare for the future. Now that 2020 is only a few years away, shedding all of its futuristic connotations, it is time to examine if and how aims for preparedness have been met. At present, efforts that have been made to plan for the future can be appraised on their ability to accommodate both realized changes and those on the horizon. Of particular interest are shifts in culture; since the 2000 U.S. Census there has been a great deal of attention to demographic trends and their role in predicting dramatic changes to the world in which we live (Perez & Hirschman, 2009). Many anticipated developments have already manifested completely or to some degree often evidenced by sweeping consequence. For example, significant impact is directly observable in the language we use to understand commonplace terms long engrained in our society. To illustrate, the term “minority” to denote the proportion of individuals of nondominant culture is currently statistically incorrect. This is evidenced in several states and has been inaccurate for many years in almost 50 metropolitan areas across the nation. It is estimated that by 2044 this misnomer will connote the nation as a whole (National Association of Social Workers [NASW], 2015a; U.S. Census Bureau, n.d.-a). Whether real or illusory, “minority” populations continue to bear plainly real racial and socioeconomic encumbrances of nondominant group membership. As a result, the oxymoron “majority minority” has become more widely used in our lexicon to represent statistical correctness while relegating nondominant groups of greater numbers to continued minority status. Actualized and mounting changes demand that professionals across disciplines and settings consider how demographic developments currently and imminently bear on readiness and efforts for the future. Any field of professional social work practice is appropriate for consideration. However, of particular interest is hospice and palliative care as aging populations are more likely to require such services and the aging demographic will continue to drastically increase in number (Bullock, 2011; Carson & Sabol, 2016; Cruz-Oliver et al., 2016; Doukas, 2014; Flores, Herman, Gates, & Brown, 2016; Ollove, 2016; U.S. Census Bureau, n.d.-a). Due to varied roles held by social workers within these settings, the profession is well positioned to promote culturally competent best practice across all levels of work (Agnew, Manktelow, Haynes, & Jones, 2011; Bosma, Johnston, et al., 2010; Bullock, 2011; Henry et al., 2015; Murty, Sanders, & Stensland, 2015; Watts, 2013; Yang & Mahon, 2012). Yet, the ever changing demographics of clients, caregivers, and families who may benefit from hospice and palliative care present unique challenges for culturally competent social work practice. Although medical conditions are often the most conspicuous concern, a range of cultural dimensions require additional attention. This is imperative as populations who have been traditionally underserved by hospice and palliative care are now seeking this care. Other cultures may require increased engagement and recruitment efforts. Understanding current and future trends in this field of practice will bring social work professionals closer to developing and applying culturally competent best practice strategies. A current review of literature pertinent to the profession contributes evidence that may be used to improve end-of-life (EOL) practice. Diversity and Cultural Competence NASW’s (2015b),Standards and Indicators for Cultural Competence in Social Work Practice upholds that “culturally competent social workers need to know the limitations and strengths of current theories, processes, and practice models, and which have specific applicability and relevance to the service needs of culturally, religiously, and spiritually multicultural clientele” (p. 26). However, achieving cultural competence is somewhat limited by the amount of literature that examines the role of various diversity factors across social work fields of practice. Although hospice and palliative care settings benefit from research on some areas of difference, many diversity subjects are not well represented in the literature (Bullock, 2011; Doorenbos et al., 2010; LoPresti, Dement, & Gold, 2016; NASW, 2015b; Schim & Doorenbos, 2010; Witten, 2014). Furthermore, government and private organizations who collect and report characteristics of those receiving hospice and palliative care often use narrow response categories that fail to capture the breadth and depth of diversity among this population (Schim & Doorenbos, 2010; Witten, 2014). The concept of cultural competence must appropriately parallel current and future demographic trends by expanding its meaning to include a broad definition of culture. It is not enough to consider culture relegated to outdated binary concepts such as African American or Hispanic in an era when a growing majority are a unique combination of characteristics that cannot be adequately captured in a checkbox. To be truly culturally competent, a host of diversity characteristics far beyond race and socioeconomic status (SES) must be considered. Therefore, considering diversity on a continuum is more realistic and reflective of the actual people with whom social workers engage. A starting point would be to include continuums of race; SES; age; religion; spirituality; sexual orientation; gender identity and expression; national origin; offender and incarceration status; refugee and immigrant status; veteran status; urban versus rural location; health behaviors; health conditions including diagnosis and prognosis; various developmental, learning, physical, and psychological abilities by diagnosis and functional level; family composition and dynamics; and trauma history. Broadening the concepts of culture and diversity and viewing these abstractions as a range of possible characteristics specific to each person is daunting to consider. Cultural competence can easily be perceived as overwhelming and impossible if presented with a large range of client descriptors. However, if cultural competence is considered as an ongoing area of professional development, rather than a skill that is learned once, then this goal becomes achievable. NASW offers an operational definition of cultural competence that reflects fluidity, intersectionality, synthesis, reflection, and an other-oriented perspective (NASW, 2015a, 2015b). This definition demonstrates that cultural competence is a moving target, a lifelong process, and a professional standard to undertake. Furthermore, expectations of cultural competence have long been rooted in the profession within NASW’s (2017),Code of Ethics and the person-in-environment framework (NASW, 2015a, 2015b); in essence, this endeavor is quite familiar yet constantly evolving to meet challenges of the time. Hospice and Palliative Care How diversity is defined and how social workers respond with cultural competence does not change from one setting to another; however, some factors may emerge as more significant than others due to setting. As expected, health behaviors, medical conditions, and diagnosis and prognoses may be the most obvious presenting concerns often taking precedence in hospice and palliative care settings. However, the importance of diversity should not be underestimated as these characteristics can significantly affect health-related concerns, convey how some populations respond to EOL care, and indicate underrepresented groups in this setting (Bosma, Apland, & Kazanjian, 2010; Bosma, Johnston, et al., 2010; Bullock, 2011; Cagle, Pek, Clifford, Guralnik, & Zimmerman, 2015; Cruz-Oliver et al., 2016; Demiris, Wittenberg-Lyles, Parker Oliver, & Washington, 2011; Doorenbos et al., 2010; Drisdom, 2013; LoPresti et al., 2016; Lynch, 2013; Moore, 2015; Murty et al., 2015; Schim & Doorenbos, 2010; Witten, 2014). Definitions Although herein the terms “hospice” and “palliative care” are used collectively to represent an array of EOL care options and distinctly when required for accuracy, it is important to clarify each individually. Although these terms often intersect, they have discrete differences. Palliative care most often refers to an array of services offered to individuals who have a serious and possibly life-threatening illness with the aim of relieving symptoms and side effects; these services are not restricted to those who are dying. Rather, palliative care addresses all areas of well-being with the overarching goal of improving an individual’s quality of life. These services are most often covered, to varying degrees, by health insurance including Medicare and Medicaid. While receiving such services, individuals may also be seeking curative and life-prolonging care (National Consensus Project, n.d.). Hospice care comprises services provided in various settings to those who are anticipated to live six months or less and are not receiving life-prolonging or curative treatments. Those accepting hospice care also receive palliative care including support for individual patients as well as their caregivers, which is sustained after the death of a loved one (National Hospice and Palliative Care Organization [NHPCO], n.d.). In essence, all who receive hospice care also benefit from palliative care while not all who receive palliative care are eligible for hospice designation as their prognosis and use of curative services may preclude it. The majority of hospice care services are paid for through the Medicare Hospice Benefit; this accounts for slightly over 80 percent of all hospice reimbursements. A Medicaid Hospice Benefit is available in many states for those who are eligible; approximately 5 percent of hospice costs are paid in this manner. Last, private insurance accounts for about 8 percent of hospice recompense (Centers for Medicare & Medicaid Services [CMS], n.d.). Herein, both hospice and palliative care are explored to inform culturally competent best practice in the overarching area of EOL services provided by social workers in various settings with the understanding that palliative care occurs as a part of hospice care. Demographics Every state across the nation provides hospice care with varying availability. Since the earliest hospice program in 1974, numbers have increased to over 6,000 programs serving as many as 1.7 million patients and their families annually constituting the inclusion of hospice care in approximately 44.6 percent of all deaths (NHPCO, 2015). Primary medical diagnosis of those receiving hospice care changes with incidence of terminal disease; 36.6 percent are cancer diagnoses, whereas 63.4 percent of diagnoses are non–cancer related, with dementia, heart disease, lung disease, and stroke or coma constituting the highest four respectively (NHPCO, 2015). Hospice patients receive care in a variety of settings that are intended to reflect a home environment; 2014 data reveal that 58.9 percent of those receiving hospice services do so in their place of residence, which may be a private home or long-term care setting; the remainder receive care in a hospice-specific facility or hospital. Demographic characteristics of hospice patients in 2014 as per NHPCO reveal the following composition: 53.7 percent female; 46.3 percent male; 84 percent age 65 or older; 41.1 percent age 85 or older; 7.1 percent Hispanic or Latino origin (reported separately from race as per U.S. Census standards); 76 percent Caucasian; 13.1 percent multiracial or other race; 7.6 percent African American; 3.1 percent Asian, Hawaiian, or other Pacific Islander; and 0.3 percent American Indian or Alaskan Native (NHPCO, 2015). When compared with U.S. Census Bureau (n.d.-a, n.d.-b) reports, it is easy to see racial disparities among those served. For example, 16.3 percent of the nation’s population is Hispanic or Latino (U.S. Census Bureau, n.d.-a), yet that group has a hospice usage rate of 7.1 percent among the 44.6 percent of all hospice users. In part, differences can be explained by cultural preferences that are at odds with how hospice services are provided. Specifically, Hispanic populations tend to favor family-centered decision making and indirect communication about the dying process so as not to cause harm, whereas hospice services often use a patient-centered approach and include frank discussions of death (Cruz-Oliver et al., 2016). The focus is to inform culturally competent best practice by understanding current and future trends among hospice and palliative care constituents; however, as available demographic data demonstrate, the complexity and scope of diversity fails to be adequately captured. Although this information provides a general sense of those served, it is lacking in detail. For instance, gender response categories are binary in nature, limited to indicating one choice of either male or female. The simple addition of “other” or “check all that apply” options would significantly improve applicability and inclusion. In a world where Facebook has offered users 71 gender options since 2014 (Wong, 2016), it seems that principal data sources regarding hospice and palliative care could be more inclusive, current, and rigorous. The mismatch between diversity characteristics captured by data and the actual cultural differences of those receiving services has been noted as a concern (Schim & Doorenbos, 2010; Witten, 2014). The consequences threaten to further solidify incorrect assumptions, neglect multicultural identities and acculturation, and discount varied levels of importance that individuals may place on their culture (Bosma, Apland, & Kazanjian, 2010). Data Sources Data and demographic information on those receiving palliative and hospice care in the United States have many sources, some of which are federally mandated and others that are not. Recently, new requirements for the former were initiated by the Patient Protection and Affordable Care Act of 2010 (P.L. 111-148), which requires participation in the Hospice Quality Reporting Program (HQRP) comprising two compulsory measures developed by CMS. These methods include the Hospice Item Set (HIS) for patient-level data compiled by service providers and the Consumer Assessment of Healthcare Providers and Systems (CAHPS) administered to families or caregivers after patient death to assess their experiences with care (CMS, n.d.). Both of HQRP’s measures are limited in their ability to capture diversity factors. For example, both the HIS and CAHPS contain one item titled “Race/Ethnicity” that comprises six discrete categories wherein “Hispanic or Latino” is an option; this shows less sensitivity than the U.S. Census metric in which Hispanic original is asked separately to distinguish between heritage or nationality versus race (CMS, n.d.). As referenced previously, a primary resource for voluntary hospice and palliative care data is the NHPCO, which is the principal professional nonprofit membership group in the country promoting quality of life through excellence in EOL care. NHPCO collects data through its National Data Set survey, which covers a variety of items related to hospice care including a limited amount of demographic items reported earlier (NHPCO, 2015). However, an overall lack of information persists about individuals receiving care who can be characterized by diversity factors outside of those cited. Unknown numbers of individuals possessing attributes that may vitally affect hospice and palliative care efforts remain completely invisible due to the lack of inclusiveness in large-scale data sources. This information does not appear to exist within reporting requirements and academic literature alike (Hasnain-Wynia & Baker, 2006; Schim & Doorenbos, 2010; Weech-Maldonado et al., 2012; Witten, 2014). Best practice suggests that systematically collecting data using culturally sensitive instruments can reduce health disparities and ensure patient-centered care (Hasnain-Wynia & Baker, 2006; Weech-Maldonado et al., 2012). Many culturally sensitive assessment models exist and are used with differing prevalence; assessment tools exclusively pertinent to distinct populations are also available to a varying degree (Hasnain-Wynia & Baker, 2006; Schim & Doorenbos, 2010; Weech-Maldonado et al., 2012; Witten, 2014). Among more globally applicable assessment models, two are prominent. First, the ABCDE Cultural Assessment Model (Kagawa-Singer & Blackwell, 2001) assesses levels of cultural adherence in attempts to improve communication and decrease stereotyping through five dimensions: attitudes, beliefs, context, decision-making style, and environment. The second multifaceted assessment is the Transcultural Assessment Model (Giger & Davidhizar, 2002), which was developed almost 30 years ago but has been updated several times to ensure its continued applicability. This model focuses on uniqueness of the individual and assesses dimensions of communication, space, social organization, time, environmental control, and biological variations. Overall, the use of comprehensive assessments that capture a range of diversity factors and their perceived importance can improve service delivery and patient outcomes (Bosma, Apland, & Kazanjian, 2010; Cruz-Oliver et al., 2016; LoPresti et al., 2016). The use of more sensitive assessments and the resulting data can help social work professionals develop a basis for best practice that is cognizant of the complex cultural identities of those served in EOL settings. Likewise, more research specific to hospice and palliative care is needed to undergird this area of professional social work practice. Research is needed to inform why and how culture is important in relation to family and patient engagement, assessment, service delivery, intervention outcomes, and overall satisfaction with services provided. Both inclusive assessment tools and increased research are paramount to developing best practice for EOL care. Trends Although current national data provide limited insight, support for the importance of developing culturally competent best practice in hospice and palliative care settings is evident in academic literature. Material that explores cultural competence within this area of practice is dwarfed by articles focusing on the experiences of specific populations by diversity factor or diagnosis. Yet, literature from a broader perspective is useful in establishing a sense of the knowledge base within the subject matter and provides a foundation for more narrowly focused contributions. Of particular usefulness is a value-based model that provides a wide-ranging approach to diversity considerations in EOL care. This model suggests that understanding cultural value distinctions on a continuum of individualism to collectivism, independence to interdependence, and self-reliance to interconnectedness may be at the crux of differences seen across populations and indicators. To illustrate, white Americans and African Americans tend to emerge on opposite ends of the spectrum on each of these values. These differences affect the likelihood of completing advance directives, family inclusiveness in decision making, and overall view of hospice care (Bullock, 2011). Therefore, value orientations can play an important role in informing best practice in hospice and palliative care settings. This is supported by findings that indicate care choices during EOL are often more dependent on ethnicity and culture rather than other demographic characteristics such as age and SES (Bosma, Apland, & Kazanjian, 2010). The impact of culture is shown to go beyond medical decision making to also influence verbal interactions, reactions to medical conditions, and affective characteristics (Bosma, Apland, & Kazanjian, 2010). Likewise, service delivery is a major area of consideration; inattentiveness to patient’s cultural factors is shown to result in substandard levels of hospice and palliative care treatment, unequal access to services, disproportionate usage rates, and a wide range of other disparate outcomes (Bosma, Apland, & Kazanjian, 2010; Cruz-Oliver et al., 2016; LoPresti et al., 2016). However, data are not available in this regard on all ethnic and cultural groups; in particular, indigenous populations are greatly underrepresented in the literature (Moore, 2015). Not surprisingly, access and utilization differences have the ability to affect health conditions, pain management, and location of death (Bosma, Apland, & Kazanjian, 2010); collectively, these consequences may negate the primary goals of palliative care. These findings are especially impactful as care providers, patients, and their families are likely to encounter heightened diversity distinctions at the end of the life cycle due to the cultural significance of mortality (Agnew et al., 2011; Bosma, Apland, & Kazanjian, 2010; Bullock, 2011). Whereas some diverse populations are represented in current literature, others are not. Regardless, findings specific to particular populations in this decade have increased awareness of diversity differences among those receiving hospice and palliative care and those who underuse these services. To illustrate, a brief review of current literature that focuses on the experiences of specific populations by diversity factor follows. Although a good deal of research and program effort has emerged to increase cultural competence with African Americans, this population remains the least likely to use hospice services even though a greater need for such is noted. Among the reasons for these findings are a general lack of adequate knowledge about services, values that oppose the nature of services, and subsequent preference for aggressive curative treatments (LoPresti et al., 2016). Consequently, these outcomes perpetuate one another given that a lack of accurate information about varied EOL options can leave African American populations with less support and the inability to make informed choices for care (Drisdom, 2013). Due to value orientations, the terms “hospice” and “palliative” have become problematic as they have grown to connote ideas that may be contrary to individual beliefs. For instance, “hospice” can be internalized as “giving up” (Drisdom, 2013). Therefore, best practice suggests that the use of different terminology may help to negate some racial disparities. Hispanic Americans and African Americans share some similarities among hospice indicators in relation to value distinctions and religious and spiritual beliefs. For example, both groups are less likely than others to complete advance directive documents for religious reasons (LoPresti et al., 2016). A good deal of current literature examines the experiences of Hispanic populations; however, diversity within these Hispanic populations is not addressed. Regardless, findings indicate that Hispanic populations experience low rates of service usage and are less likely to experience “good death,” which includes features such as having one’s wishes followed, service provider ability to manage pain and reduce stress and anxiety, attention to nonmedical needs, active provider involvement, possessing accurate knowledge, and perceiving compassion (Cagle et al., 2015). In response to these shortcomings, support for best practice can be found in various intervention models. For example, to better support a good death, implementation of culturally sensitive case-based intervention shows improvement in the level of knowledge and overall attitudes about hospice and palliative care services (Cruz-Oliver et al., 2016). Similarly, the well-being of Hispanic caregivers shows improvement through a psychoeducational problem-solving skills intervention that supports collectivistic cultural values (Demiris et al., 2011). Encouraging a broadening of diversity characteristics outside of ethnic and racial factors, there is some limited literature concerning populations that are now likely to enter hospice and palliative care settings in higher numbers or perhaps for the first time. Among these are methadone patients. At this time, patients entering methadone programs are more likely to be between 50 and 70 years of age than ever before; this trend is expected to increase and requires increased attention and culturally competent responses. Significant concerns that affect EOL care for this population include a host of progressively life-threatening comorbid medical conditions. Culturally competent best practice among this group calls attention to treatment planning that promotes not only health management and quality of life, but also a biopsychosocial approach that addresses a multitude of problems related to opioid dependence through a palliative care philosophy (Doukas, 2014). Prison inmates in the United States who receive hospice and palliative care services present new challenges for social workers and the correctional facilities where they are delivered. Currently, incarcerated individuals over the age of 55, which is considered elderly as this population is clinically10 years ahead of those not incarcerated, constitute the fastest growing demographic group within the nation’s prison systems (Supiano, Cloyes, & Berry, 2014). By 2030 it is estimated that individuals over 55 years of age will comprise one-third of all incarcerated people (Osborne Association, 2014). Data updated on June 25, 2016, by the Federal Bureau of Prisons estimate that 19,683 inmates (10.2 percent) in federal prisons are over age 55. State data differ greatly and are not as current; as of 2013, 131,500 or 10 percent of all inmates of state prison systems were age 55 or over (Carson & Sabol, 2016). However, some states such as Virginia report that 20 percent of their state inmates are 55 or over (Ollove, 2016). Although most states are burdened by the cost of providing services related to aging, they vary considerably as to the manner in which they choose to meet their inmates’ needs. Some have instituted “compassionate release” or “geriatric conditional release” programs where state laws allow; others provide aging and EOL care within their correctional facilities. This setting presents best practice challenges related to strict boundary structures that do not match well with the fundamental tenets of hospice and palliative care (Carson & Sabol, 2016). Social workers delivering services in prison settings are confronted with the need to support patient and worker relationships appropriate for the work at hand, while carefully negotiating professionalism within a multidisciplinary team (Supiano et al., 2014). Individuals who identify as transgender express worry over their EOL prospects yet are poorly equipped for these considerations due to poor relationships with health care systems marred by discriminatory and often traumatizing practices (Witten, 2014). Overall, this population continues to receive little positive public attention, remain underrepresented among research studies, experience disparate medical care, and endure discrimination. A simple Web search of “transgender and hospice” surprisingly delivers no applicable results. Nonetheless, knowledge about these individuals would be invaluable for hospice and palliative care settings based on population estimates alone. For example, approximately 1.4 million people in the United States identify as transgender (Flores et al., 2016), yet there is little research about this population as they age or around EOL issues (Witten, 2014). Furthermore, long-standing and far-reaching marginalization experienced by transgender individuals results in trauma reactions to various health care and service providers, which further challenge the provision of appropriate hospice and palliative care services (Witten, 2014). Although research about transgender EOL concerns is lacking, a large study of lesbian, gay, bisexual, and transgender older adults may shed some light on the topic. Study findings among this population indicate that 44 percent live alone compared with 18 percent of the general population; over 50 percent report the loss of close personal relationships due to gender identity; and, perhaps most striking, 48 percent depression rates are reported compared with 5 percent among older adult heterosexuals (Fredriksen-Goldsen, Kim, & Goldsen, 2011). It is suggested that increased cultural competence is greatly needed for successful work with transgender populations later in life; areas for increased attention to best practice is suggested at all levels including practitioners, agencies, facilities, religious and spiritual groups, and legal consult (Witten, 2014). Last, rural geographic residence of those seeking EOL care bring distinct challenges to service provision and outcomes for patients and families. In these settings, proximal access to adequate hospice and palliative care services are of concern as location can affect the amount of services available, shortages of professionals to provide various services, the ability of health care providers to facilitate quick referrals and admissions, capacity to attract and retain professionals with appropriate educational backgrounds and training, and presenting cultural differences particular to rural settings. Overall, rural areas have fewer hospice providers resulting in potentially greater proximal distances for patients, caregivers, families, and provider staff to negotiate. Greater distances, coupled with less available public transportation, can often be a significant barrier to services. Best practice recommendations look to novel hospice and palliative care delivery models such as telehealth, provider training, and changes to Medicare Hospice Benefits, which can improve EOL care in rural areas (Lynch, 2013). Directions for Social Work The importance of culturally competent best practice in hospice and palliative care settings is far-reaching given the ever-growing range of diversity characteristics and a marked increase of aging populations in the United States. The administrative reports, government data, academic literature, professional standards, and assessment tools discussed are a starting point to advance culturally competent practice guidelines for EOL care. However, this goal remains challenging because the numbers and needs of individuals possessing particular diversity characteristics remain largely unknown. Although pertinent literature identified numerous shortcomings, strategies to develop empirically supported culturally competent practices are suggested. NASW Standards and Indicators for Cultural Competence in Social Work Practice (2015b) and NASW Standards for Palliative and End of Life Care (2004) provide a foundation for appreciating the intersectionality of diversity factors in the context of EOL settings. This is a good place to start to formulate directions for the future as these standards bear on the development of best practice. Specifically, NASW (2004) cautions that “culture influences individuals’ and families’ experience as well as the experience of the practitioner and institution. Social workers should consider culture in practice settings involving palliative and end of life care” (p. 26). This points to the importance of understanding the interdependent and overlapping nature of multifaceted cultural dimensions and their impact on various EOL concerns as experienced by each individual and family member. It is further suggested that practice competence can help to properly prepare professionals for individualized client-centered care that can more effectively and positively affect psychological distress, pain, and the dying process for both individuals and families. Recommendations for practitioners include continuing education and training, specialization and certification programs, engagement in research, and appropriate use of supervision and community experts; support from all available resources is needed to keep up with the demands of this field of work (NASW, 2004). In sum, recommendations for more accurate and inclusive data, the use of professional standards, and practitioner knowledge and skill acquisition place the onus on social workers to achieve cultural competence. However, awareness and familiarity with various areas of difference may not adequately prepare social workers for diversity in hospice and palliative care. The cultural competence approach lacks attention to reciprocal personal and professional reflection and cognizance of the complex structural forces that form client experiences. To advance practice, a cultural humility approach offers social workers a deeper way to understand and respond to cultural differences of others as well as themselves. Simply defined, cultural humility is a “process of committing to an ongoing relationship with patients, communities, and colleagues that requires humility as individuals continually engage in self-reflection and self-critique” (Fisher-Borne, Montana Cain, & Martin, 2015, p. 171). Applied to diversity in the context of EOL care, cultural humility can ease the burden on social workers to attain competence as a discrete goal by instead actively participating in a continual process with clients, constituencies and institutions, and within themselves. References Agnew, A., Manktelow, R., Haynes, T., & Jones, L. ( 2011). Bereavement assessment practice in hospice settings: Challenges for palliative care social workers. British Journal of Social Work,  41( 1), 111– 130. Google Scholar CrossRef Search ADS   Bosma, H., Apland, L., & Kazanjian, A. ( 2010). Cultural conceptualizations of hospice palliative care: More similarities than differences. Palliative Medicine,  24, 510– 522. doi:10.1177/0269216309351380 Google Scholar CrossRef Search ADS   Bosma, H., Johnston, M., Cadell, S., Wainwright, W., Abernethy, N., Feron, A., et al.  . ( 2010). Creating social work competencies for practice in hospice palliative care. Palliative Medicine,  24( 1), 79– 87. doi:10.1177/0269216309346596 Google Scholar CrossRef Search ADS   Bullock, K. ( 2011). The influence of culture on end-of-life decision making. Journal of Social Work in End-of-Life & Palliative Care,  7( 1), 83– 98. doi:10.1080/15524256.2011.548048 Google Scholar CrossRef Search ADS   Cagle, J. G., Pek, J., Clifford, M., Guralnik, J., & Zimmerman, S. ( 2015). Correlates of a good death and the impact of hospice involvement: Findings from the National Survey of Households Affected by Cancer. Supportive Care in Cancer,  23, 809– 818. doi:10.1007/s00520-014-2404-z Google Scholar CrossRef Search ADS   Carson, E. A., & Sabol, W. J. ( 2016). Aging of the state prison population, (1993-2013) (NCJ 248766). Retrieved from http://www.bjs.gov/index.cfm?ty=pbdetail&iid=5602 Centers for Medicare & Medicaid Services. (n.d.). Hospice quality reporting. Retrieved from https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Hospice-Quality-Reporting/ Cruz-Oliver, D. M., Malmstrom, T. K., Fernández, N., Parikh, M., García, J., & Sanchez-Reilly, S. ( 2016). Education intervention “Caregivers Like Me” for Latino family caregivers improved attitudes toward professional assistance at end-of-life care. American Journal of Hospice & Palliative Medicine,  33, 527– 536. doi:10.1177/1049909115584315 Google Scholar CrossRef Search ADS   Demiris, G., Wittenberg-Lyles, E., Parker Oliver, D., & Washington, K. ( 2011). Delivering a psycho-educational intervention to Hispanic hospice informal caregivers. Palliative Medicine,  25, 185– 186. doi:10.1177/0269216310380765 Google Scholar CrossRef Search ADS   Doorenbos, A. Z., Lindhorst, T., Schim, S. M., Van Schaik, E., Demiris, G., Wechkin, H. A., & Curtis, J. R. ( 2010). Development of a Web-based educational intervention to improve cross-cultural communication among hospice providers. Journal of Social Work in End-of-Life & Palliative Care,  6( 3–4), 236– 255. doi:10.1080/15524256.2010.529022 Google Scholar CrossRef Search ADS   Doukas, N. ( 2014). Are methadone counselors properly equipped to meet the palliative care needs of older adults in methadone maintenance treatment? Implications for training. Journal of Social Work in End-of-Life & Palliative Care,  10( 2), 186– 204. doi:10.1080/15524256.2014.906370 Google Scholar CrossRef Search ADS   Drisdom, S. ( 2013). Barriers to using palliative care: Insight into African American culture. Clinical Journal of Oncology Nursing,  17, 376– 380. doi:10.1188/13.CJON.376-380 Google Scholar CrossRef Search ADS   Fisher-Borne, M., Montana Cain, J., & Martin, S. L. ( 2015). From mastery to accountability: Cultural humility as an alternative to cultural competence. Social Work Education,  24( 2), 165– 181. Google Scholar CrossRef Search ADS   Flores, A. R., Herman, J. L., Gates, G. J., & Brown, T.N.T. ( 2016). How many adults identify as transgender in the United States? Retrieved from http://williamsinstitute.law.ucla.edu Fredriksen-Goldsen, K. I., Kim, H. J., & Goldsen, J. ( 2011). The health report: Resilience and disparities among lesbian, gay, bisexual and transgender older adults—Preliminary findings . Seattle: University of Washington, Institute for Multigenerational Health. Giger, J. N., & Davidhizar, R. ( 2002). The Giger and Davidhizar Transcultural Assessment Model. Journal of Transcultural Nursing,  13( 3), 185– 188. Google Scholar CrossRef Search ADS   Hasnain-Wynia, R., & Baker, D. W. ( 2006). Obtaining data on patient race, ethnicity, and primary language in health care organizations: Current challenges and proposed solutions. Health Services Research,  41( 4, Pt. 1), 1501– 1518. Henry, B., Lam, M., Chow, R., Chiu, L., Chow, S., Chow, E., et al.  . ( 2015). Social work in end-of-life care: A review of the most highly cited papers. Journal of Pain Management,  8, 331– 338. Kagawa-Singer, M., & Blackwell, L. J. ( 2001). Negotiating cross-cultural issues at the end of life. JAMA,  286, 2993– 3001. Google Scholar CrossRef Search ADS   LoPresti, M. A., Dement, F., & Gold, H. T. ( 2016). End-of-life care for people with cancer from ethnic minority groups. American Journal of Hospice & Palliative Medicine,  33, 291– 305. doi:10.1177/1049909114565658 Google Scholar CrossRef Search ADS   Lynch, S. ( 2013). Hospice and palliative care access issues in rural areas. American Journal of Hospice & Palliative Medicine,  30, 172– 177. doi:10.1177/1049909112444592 Google Scholar CrossRef Search ADS   Moore, R. M. ( 2015). Appreciating cultural dimensions and connections in hospice care. Journal of Social Work in End-of-Life & Palliative Care,  11( 1), 6– 10. doi:10.1080/15524256.2015.1021069 Google Scholar CrossRef Search ADS   Murty, S. A., Sanders, S., & Stensland, M. ( 2015). End-of-life care as a field of practice in the social work curriculum. Journal of Social Work in End-of-Life & Palliative Care,  11( 1), 11– 26. doi:10.1080/15524256.2015.1021071 Google Scholar CrossRef Search ADS   National Association of Social Workers. ( 2004). NASW standards for palliative and end-of-life care . Washington, DC: Author. National Association of Social Workers. ( 2015a). Social work speaks: National Association of Social Workers policy statements 2015–2017  ( 10th ed.). Washington, DC: Author. National Association of Social Workers. ( 2015b). Standards and indicators for cultural competence in social work practice . Washington, DC: Author. National Association of Social Workers. ( 2017). Code of ethics of the National Association of Social Workers . Washington, DC: Author. National Consensus Project. (n.d.). What is palliative care?  Retrieved from http://www.nationalconsensusproject.org National Hospice and Palliative Care Organization. ( 2015). Hospice care in America, 2015 edition. Retrieved from http://www.nhpco.org/sites/default/files/public/Statistics_Research/2015 National Hospice and Palliative Care Organization. (n.d.). Hospice care. Retrieved from https://www.nhpco.org/about/hospice-care Ollove, M. ( 2016). Elderly inmates burden state prisons. Retrieved from http://www.pewtrusts.org/en/research-andanalysis/blogs/stateline/2016/03/17/elderly-inmates-burden-state-prisons Osborne Association. ( 2014). The high cost of low risk: The crisis of America’s aging prison population. Retrieved from http://www.osborneny.org Patient Protection and Affordable Care Act of 2010, P.L. 111-148, 124 Stat. 119 (Mar. 23, 2010). Perez, A. D., & Hirschman, C. ( 2009). The changing racial and ethnic composition of the US population: Emerging American identities. Population and Development Review,  3( 1), 1– 51. Google Scholar CrossRef Search ADS   Schim, S. M., & Doorenbos, A. Z. ( 2010). A three-dimensional model of cultural congruence: Framework for intervention. Journal of Social Work in End-of-Life & Palliative Care,  6( 3–4), 256– 270. doi:10.1080/15524256.2010.529023 Google Scholar CrossRef Search ADS   Supiano, K. P., Cloyes, K. G., & Berry, P. H. ( 2014). The grief experience of prison inmate hospice volunteer caregivers. Journal of Social Work in End-of-Life & Palliative Care,  10( 1), 80– 94. doi:10.1080/15524256.2013.877866 Google Scholar CrossRef Search ADS   U.S. Census Bureau. (n.d.-a). New Census Bureau report analyzes U.S. population projections. Retrieved from http://www.census.gov/newsroom/press-releases/2015/cb15-tps16.html U.S. Census Bureau. (n.d.-b). QuickFacts. Retrieved from https://www.census.gov/quickfacts/table Watts, J. H. ( 2013). Exploring the ‘social’ of social work in palliative care: Working with diversity. Illness, Crisis, & Loss,  21( 4), 281– 295. doi:10.2190/IL.21.4.b Google Scholar CrossRef Search ADS   Weech-Maldonado, R., Carle, A., Weidmer, B., Hurtado, M., Ngo-Metzger, Q., & Hays, R. D. ( 2012). The Consumer Assessment of Healthcare Providers and Systems (CAHPS) cultural competence (CC) item set. Medical Care,  50( 9, Suppl. 2), S22– S31. doi:10.1097/MLR.0b013e318263134b Google Scholar CrossRef Search ADS   Witten, T. M. ( 2014). End of life, chronic illness, and trans-identities. Journal of Social Work in End-of-Life & Palliative Care,  10, 34– 58. doi:10.1080/15524256.2013.877864 Google Scholar CrossRef Search ADS   Wong, C. M. ( 2016). Facebook introduces gender free-form field for users. Queer Voices. Retrieved from http://www.huffingtonpost.com Yang, Y. T., & Mahon, M. M. ( 2012). Palliative care for the terminally ill in America: The consideration of QALYs, costs, and ethical issues. Medicine, Health Care, and Philosophy,  15, 411– 416. doi:10.1007/s11019-011-9364-6 Google Scholar CrossRef Search ADS   © 2017 National Association of Social Workers

Journal

Health & Social WorkOxford University Press

Published: Feb 1, 2018

There are no references for this article.

You’re reading a free preview. Subscribe to read the entire article.


DeepDyve is your
personal research library

It’s your single place to instantly
discover and read the research
that matters to you.

Enjoy affordable access to
over 18 million articles from more than
15,000 peer-reviewed journals.

All for just $49/month

Explore the DeepDyve Library

Search

Query the DeepDyve database, plus search all of PubMed and Google Scholar seamlessly

Organize

Save any article or search result from DeepDyve, PubMed, and Google Scholar... all in one place.

Access

Get unlimited, online access to over 18 million full-text articles from more than 15,000 scientific journals.

Your journals are on DeepDyve

Read from thousands of the leading scholarly journals from SpringerNature, Elsevier, Wiley-Blackwell, Oxford University Press and more.

All the latest content is available, no embargo periods.

See the journals in your area

DeepDyve

Freelancer

DeepDyve

Pro

Price

FREE

$49/month
$360/year

Save searches from
Google Scholar,
PubMed

Create lists to
organize your research

Export lists, citations

Read DeepDyve articles

Abstract access only

Unlimited access to over
18 million full-text articles

Print

20 pages / month

PDF Discount

20% off