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Promoting Advance Directives among African Americans: A Faith-Based Model
Abstract
Studies show that African Americans are less likely than other ethnic groups to complete advance directives. However, what influences African Americans' decisions to complete or not complete advance directives is unclear.
Using a faith-based promotion model, 102 African Americans aged 55 years or older were recruited from local churches and community-based agencies to participate in a pilot study to promote advance care planning. Focus groups were used to collect data on participants' preferences for care, desire to make personal choices, values and attitudes, beliefs about death and dying, and advance directives. A standardized interview was used in the focus groups, and the data were organized and analyzed using NUDIST 4 software (QRS Software, Victoria, Australia).
Three fourths of the participants refused to complete advance directives. The following factors influenced the participants' decisions about end-of-life care and completion of an advance directive: spirituality; view of suffering, death, and dying; social support networks; barriers to utilization; and mistrust of the health care system.
The dissemination of information apprises individuals of their right to self-determine about their care, but educational efforts may not produce a significant change in behavior toward completion of advance care planning. Thus, ongoing efforts are needed to improve the trust that African Americans have in medical and health care providers.
... 12,13 Existing community-based interventions to increase ACP specifically among Black individuals have demonstrated feasibility, increased knowledge about ACP, and higher rates of advance directive completion. [14][15][16][17][18][19][20][21][22][23] Findings from these interventions suggest that communitybased approaches to ACP are promising. To date, many of these interventions have focused on church congregations or used faith-based models, [14][15][16][17][18] which may not reach some groups, such as men and younger generations who attend religious meetings less often. ...
... [14][15][16][17][18][19][20][21][22][23] Findings from these interventions suggest that communitybased approaches to ACP are promising. To date, many of these interventions have focused on church congregations or used faith-based models, [14][15][16][17][18] which may not reach some groups, such as men and younger generations who attend religious meetings less often. 13,24 Additionally, some of the existing interventions include facilitation by trained clinicians such as nurses, which may not be feasible in some under-resourced settings. ...
... 16 While several prior studies assessed multiple facets of ACP (e.g., self-efficacy regarding decision-making), 15,20,21 others focused solely on the completion of advance directives. 14,16,17,19 Yet, it is important to assess the impact of interventions on key components of ACP more broadly, such as communication with surrogate decision-makers. ...
Background:
People identifying as Black/African American are less likely to engage in advance care planning (ACP) compared to their White peers, despite the association of ACP with improved patient and caregiver outcomes.
Objectives:
Assess facilitators/barriers to ACP in the San Francisco (SF) Black community and co-design/implement/test community-based ACP pilot events.
Design:
Community-based participatory research, including qualitative research, intervention development, and implementation.
Participants:
In partnership with the SF Palliative Care Workgroup (which includes health system, city, and community-based organizations), we formed an African American Advisory Committee (n = 13). We conducted 6 focus groups with Black older adults (age ≥ 55), caregivers, and community leaders (n = 29). The Advisory Committee then selected 5 community-based organizations through a widespread request for proposal. These community-based organizations designed and implemented community-based pilot events to support ACP engagement.
Main measures:
Two authors analyzed recorded focus group transcripts using thematic analysis. We assessed pre- vs post-event readiness to engage in ACP (validated ACP Engagement Survey; 1-4 scale, 4 = most ready) using Wilcoxon signed rank tests and assessed event acceptability with open-ended questions.
Key results:
Themes included the importance of ACP to the Black community (sub-themes: strengthens families; preserves dignity, particularly for sexual/gender minorities; is tied to financial planning) and facilitators for increasing ACP engagement (sub-themes: culturally relevant materials; events in trusted community spaces including Black-owned businesses). A total of 114 participants attended 5 events; 74% identified as Black, and 16% as sexual/gender minorities. Readiness to engage in ACP was similar pre- vs post-events; 98% would recommend the events to others.
Conclusions:
Community-based ACP events designed and led by and for the Black community are highly acceptable. Novel insights underscored the importance of financial planning as part of ACP and the role of Black-owned businesses as trusted spaces for ACP-related discussions.
... Most studies were conducted in the USA (n = 36) and one in Australia (n = 1). Sixteen studies were conducted in community-based settings [18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33], eight in out-patient clinical care units (i.e., dialysis centres, cancer clinics, HIV clinic) [34][35][36][37][38][39][40][41], seven in urban hospitals [42][43][44][45][46][47][48] and six in primary care settings [49][50][51][52][53][54]. Eleven studies focused on a multi-racial/ethnic population [20, 30, 37, 42, 45-49, 51, 53]; 10 on patients of Latino descent [23,26,27,34,36,39,44,50,52,54] and African American descent [18,19,21,24,32,35,38,40,41,43]; two on patients of ...
... Sixteen studies were conducted in community-based settings [18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33], eight in out-patient clinical care units (i.e., dialysis centres, cancer clinics, HIV clinic) [34][35][36][37][38][39][40][41], seven in urban hospitals [42][43][44][45][46][47][48] and six in primary care settings [49][50][51][52][53][54]. Eleven studies focused on a multi-racial/ethnic population [20, 30, 37, 42, 45-49, 51, 53]; 10 on patients of Latino descent [23,26,27,34,36,39,44,50,52,54] and African American descent [18,19,21,24,32,35,38,40,41,43]; two on patients of ...
... Four studies used qualitative (n = 1) and mixed methods (n = 3) research designs. Among these, two studies met 80% of MMAT quality criteria (received 4 out of 5 stars) [21,32], one study met 60% of MMAT quality criteria (received 3 out of 5 stars) [24], and one study met 40% of MMAT quality criteria (received 2 out of 5 stars) [26]. The two studies that employed cross-sectional research designs were rated to have moderate quality ratings (scored 4 to 7 out of a total 11 points) [33,36]. ...
Background
End-of-life decision-making tools are used to establish a shared understanding among patients, families and healthcare providers about medical treatment and goals of care. This systematic review aimed to understand the availability and effect of end-of-life decision-making tools on: (i) goals of care and advance care planning; (ii) patient and/or family satisfaction and well-being; and (iii) healthcare utilization among racial/ethnic, cultural, and religious minorities.
Methods
A search was conducted in four electronic databases (inception to June 2021). Articles were screened for eligibility using pre-specified criteria. We focused on adult patients (aged ≥18 years) and included primary research articles that used quantitative, qualitative, and mixed-methods designs. Complementary quality assessment tools were used to generate quality scores for individual studies. Extracted data were synthesized by outcome measure for each type of tool, and an overall description of findings showed the range of effects.
Results
Among 14,316 retrieved articles, 37 articles were eligible. We found that advance care planning programs (eleven studies), healthcare provider-led interventions (four studies), and linguistically-tailored decision aids (three studies) increased the proportion of patients documenting advance care plans. Educational tools (three studies) strongly reduced patient preferences for life-prolonging care. Palliative care consultations (three studies) were strongly associated with do-not-resuscitate orders. Advance care planning programs (three studies) significantly influenced the quality of patient-clinician communication and healthcare provider-led interventions (two studies) significantly influenced perceived patient quality of life.
Conclusion
This review identified several end-of-life decision-making tools with impact on patient and family-related outcomes of care among ethnocultural minorities. Advance care planning programs, healthcare provider-led interventions and decision aids increased documentation of end-of-life care plans and do-not-resuscitate orders, and educational tools reduced preferences for life-prolonging care. Further research is needed to investigate the effect of tools on healthcare utilization, and with specific patient population subgroups across different illness trajectories and healthcare settings.
... 3,7,8 Yet studies show that Black Americans are less likely to participate in ACP than non-Hispanic Whites. [9][10][11][12] Evidence suggests numerous reasons for this disparity, including distrust resulting from experiences of discrimination in a medical setting, 9,[13][14][15][16][17][18] cultural values and spiritual beliefs that conflict with ACP, 9,11,15,17,[19][20][21][22] and lack of understanding or clarity regarding ACP. 9,13,22 There is a need to present the concept and practices of ACP in clear, innovative, culturally relevant ways to reach underserved Black communities. ...
... 3,7,8 Yet studies show that Black Americans are less likely to participate in ACP than non-Hispanic Whites. [9][10][11][12] Evidence suggests numerous reasons for this disparity, including distrust resulting from experiences of discrimination in a medical setting, 9,[13][14][15][16][17][18] cultural values and spiritual beliefs that conflict with ACP, 9,11,15,17,[19][20][21][22] and lack of understanding or clarity regarding ACP. 9,13,22 There is a need to present the concept and practices of ACP in clear, innovative, culturally relevant ways to reach underserved Black communities. ...
... 3,7,8 Yet studies show that Black Americans are less likely to participate in ACP than non-Hispanic Whites. [9][10][11][12] Evidence suggests numerous reasons for this disparity, including distrust resulting from experiences of discrimination in a medical setting, 9,[13][14][15][16][17][18] cultural values and spiritual beliefs that conflict with ACP, 9,11,15,17,[19][20][21][22] and lack of understanding or clarity regarding ACP. 9,13,22 There is a need to present the concept and practices of ACP in clear, innovative, culturally relevant ways to reach underserved Black communities. ...
Advance care planning is under-used among Black Americans, often because of experiences of racism in the health care system, resulting in a lower quality of care at the end of life. African American faith communities are trusted institutions where such sensitive conversations may take place safely. Our search of the literature identified five articles describing faith-based advance care planning education initiatives for Black Americans that have been implemented in local communities. We conducted a content analysis to identify key themes related to the success of a program’s implementation and sustainability. Our analysis showed that successful implementation of advance care planning programs in Black American congregations reflected themes of building capacity, using existing ministries, involving faith leadership, exhibiting cultural competency, preserving a spiritual/Biblical context, addressing health disparities, building trust, selectively using technology, and fostering sustainability. We then evaluated five sets of well-known advance care planning education program materials that are frequently used by pastors, family caregivers, nurse’s aides, nurses, physicians, social workers, and chaplains from a variety of religious traditions. We suggest ways these materials may be tailored specifically for Black American faith communities, based on the key themes identified in the literature on local faith-based advance care planning initiatives for Black churches. Overall, the goal is to achieve better alignment of advance care planning education materials with the African American faith community and to increase implementation and success of advance care planning education initiatives for all groups.
... 72 Recent studies show that faith-based organizational communication of appropriate information regarding hospice care may improve attitudes towards hospice care among non-Hispanic Blacks. 114 Hospices have an opportunity to increase utilization of their services among non-Hispanic Blacks by establishing meaningful relationships with local churches to disseminate hospice information materials. 61 However, recruiting participants solely from faith-based organizations is not sufficient to enhance enrollment of parishioners to hospice care. ...
... 61 However, recruiting participants solely from faith-based organizations is not sufficient to enhance enrollment of parishioners to hospice care. 114 Effective and appropriate intensive interventional training programs must include comprehensive multilevel culturally sensitive messages and materials to improve communication about palliative care and hospice between patients, family and care providers. 35,185 Satisfaction of bereaved non-Hispanic blacks' family members with hospice care services. ...
... One of major factors that influenced non-Hispanic Blacks' decisions about completion of an advance directive was mistrust in the health care system. 114 Higher levels of mistrust in non-Hispanic Blacks may be partially explained by their position as a minority group in the United States. Centuries of racial inferiority in the United States, have led to poor health outcomes, worse health status, and low quality of care for non-Hispanic Blacks. ...
Objectives
Published research in disparities in advance care planning, palliative, and end-of-life care is limited. However, available data points to significant barriers to palliative and end-of-life care among minority adults. The main objective of this scoping review was to summarize the current published research and literature on disparities in palliative and hospice care and completion of advance care planning and directives among non-Hispanc Blacks.
Methods
The scoping review method was used because currently published research in disparities in palliative and hospice cares as well as advance care planning are limited. Nine electronic databases and websites were searched to identify English-language peer-reviewed publications published within last 20 years. A total of 147 studies that addressed palliative care, hospice care, and advance care planning and included non-Hispanic Blacks were incorporated in this study. The literature review include manuscripts that discuss the intersection of social determinants of health and end-of-life care for non-Hispanic Blacks. We examined the potential role and impact of several factors, including knowledge regarding palliative and hospice care; healthcare literacy; communication with providers and family; perceived or experienced discrimination with healthcare systems; mistrust in healthcare providers; health care coverage, religious-related activities and beliefs on palliative and hospice care utilization and completion of advance directives among non-Hispanic Blacks.
Discussion
Cross-sectional and longitudinal national surveys, as well as local community- and clinic-based data, unequivocally point to major disparities in palliative and hospice care in the United States. Results suggest that national and community-based, multi-faceted, multi-disciplinary, theoretical-based, resourceful, culturally-sensitive interventions are urgently needed. A number of practical investigational interventions are offered. Additionally, we identify several research questions which need to be addressed in future research.
... It has been shown that Hispanic and African Americans are less likely than Euro-Americans to know about ACPs or to complete them. [28][29][30][31][32][33][34][35][36][37] Hispanic and African Americans tend to trust their family to promote their end-of-life care and they more readily disclose to them their end-of-life wishes rather than complete formal documentation. 28,35,38,39 In countries other than the United States, there is also clear evidence of poor uptake of ACP by older people from diverse cultural and ethnic background, namely, in the United Kingdom by people of Black, Asian and Minority Ethnic (BAME) groups; 4 in Australia, there is low uptake by Aboriginal people 2 and in New Zealand, by Maori and Pacific populations. 1 There is scarce knowledge about perspectives of Indigenous American Indians' and First Nation Peoples (Canada) regarding end-oflife treatments, which has resulted in health care providers functioning at less than optimum levels. ...
... Religion and spirituality also dictate how African Americans make end-of-life decisions and influences how they cope with adversity. [30][31][32] A tradition of employing a family-centred decision-making process during family crisis is common. 5,6,13,27,51 Furthermore, for older African Americans, invasive medical care may be pursued to buy time for God to manifest healing. ...
... 5,6,13,27,51 Furthermore, for older African Americans, invasive medical care may be pursued to buy time for God to manifest healing. 28 Factors that influence decisions about end-of-life care and completion of an ACP for this group also included concerns about institutionalised care and health insurance coverage, [30][31][32] as well as wanting to avoid burdening caregivers and remain in control of personal health care. 49 In addition, African Americans prefer to be agents of their own lives through their decisions and actions about health and functional status, but not necessarily of their dying or death, which could explain a lack of interest in ACP. ...
In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions.
... Among the 26 studies included in our systematic review, six were experimental studies that examined the effects of educational interventions on advance care planning; Two with Blacks [15,16], two with Asians [17,18], one with Latinos [19], and one with multiple ethnic groups [20]. Out of 12 studies that employed cross-sectional surveys, seven compared and contrasted multiple ethnic groups [21][22][23][24][25][26][27], whereas five studies focused on a single ethnic group: three with Asian Americans [28][29][30] and two with Latinos [31,32]. ...
... For example, a qualitative study with Colombian, Mexican and Puerto Rican women with a cancer diagnosis found around 40% completed an advance directive [37]. Furthermore, studies with multiple ethnic groups living in the community commonly found a lower engagement in ACP among ethnic minorities compared to their White counterparts [5,15,[21][22][23]. In particular, Latinos tended to show far less engagement in ACP compared to other ethnic minority groups [21,22]. ...
... Ethnic minorities consistently reported low health literacy regarding ACP; they lacked proper knowledge about what ACP was and how to complete such documents. Black [15], Latino [37,38], and Asian Americans [3,34] all commonly showed a lack of awareness or lack of knowledge about ACP. A cross-sectional study identified Latinos as the most vulnerable population in ACP, revealing they possessed the lowest level of awareness about ACP among all ethnic groups surveyed [22]. ...
Growing evidence suggests a low engagement in advance care planning (ACP) among ethnic minorities in the U.S. The purpose of this study was to synthesize findings from prior research about ACP among ethnic minorities. An extensive literature search was conducted using multiple electronic databases. After applying inclusion criteria, 26 studies were included. Four categories of facilitators and barriers to ACP were identified: (1) Socio-demographic factors, (2) health status, literacy and experiences, (3) cultural values, and (4) spirituality. Socio-demographic factors showed inconsistent findings regarding their association with ACP engagement. Worse health status and knowledge about ACP are common facilitators across ethnic minority groups, whereas mistrust toward the health care system was a barrier only for Blacks. Collectivistic cultural values influenced ACP engagement among Latinos and Asian Americans; however, spirituality/religion played an important role among Blacks. The implications for culturally competent approaches to promote ACP and future research directions are discussed.
... Black Americans experience lower quality communication in health-care settings generally (Bullock 2006;Palmer et al. 2014;Shen et al. 2018) participate less in ACP (Harrison et al. 2016), advance directives (Bazargan et al. 2021), and enroll in hospice at lower rates than White Americans (Loggers et al. 2009;Mack et al. 2010a). Multiple factors contribute to lower engagement of Black Americans in ACP: patient factors include cultural and religious beliefs that may shape willingness to talk about dying, family consensus (as opposed to individual) decision-making, and poor access to care; clinician factors include implicit and explicit racial biases about willingness to participate in such discussions and challenges with cross-cultural communication (Periyakoil et al. 2015;Sanders et al. 2016). ...
... Multiple factors contribute to lower engagement of Black Americans in ACP: patient factors include cultural and religious beliefs that may shape willingness to talk about dying, family consensus (as opposed to individual) decision-making, and poor access to care; clinician factors include implicit and explicit racial biases about willingness to participate in such discussions and challenges with cross-cultural communication (Periyakoil et al. 2015;Sanders et al. 2016). Varied interventions 2 Justin J. Sanders et al. to improve ACP among Black Americans include dyadic nursing interventions (Song et al. 2010) and engaging faith communities (Balboni et al. 2013;Bullock 2006). ...
Objectives
Serious illness conversations (SICs) can improve the experience and well-being of patients with advanced cancer. A structured Serious Illness Conversation Guide (SICG) has been shown to improve oncology patient outcomes but was developed and tested in a predominantly White population. To help address disparities in advanced cancer care, we aimed to assess the acceptability of the SICG among African Americans with advanced cancer and their clinicians.
Methods
A two-phase study conducted in Charleston, SC, included focus groups to gather perspectives on the SICG in Black Americans and a single-arm pilot study of a revised SICG with surveys and qualitative exit interviews to evaluate patient and clinician perspectives. We used descriptive analysis of survey results and thematic analysis of qualitative data.
Results
Community-based and patient focus group participants ( N = 20) reported that a simulated conversation using an adapted SICG built connection, promoted control, and fostered consideration of religious faith and family. Black patients with advanced cancer ( N = 23) reported that SICG-guided conversations were acceptable, helpful, and promoted conversations with loved ones. Oncologists found conversations feasible to implement and skill-building, and also identified opportunities for training and implementation that could support meeting the needs of their patients with low health literacy. An adapted SICG includes language to assess the strength and affirm the clinician–patient relationship.
Significance of results
An adapted structured communication tool to facilitate SIC, the SICG, appears acceptable to Black Americans with advanced cancer and seems feasible for use by oncology clinicians working with this population. Further testing in other marginalized populations may address disparities in advanced cancer care.
... Factors such as socioeconomic status, culture, or health literacy may confound or mediate these observations [14,17,[21][22][23]. Unfortunately, large retrospective cohorts, and even survey studies, that describe these differences, often fall short in their ability to make meaning of such complex constructs. ...
... Specifically, our non-white participants voiced concern about discrimination and inequity; however, these concerns may be implied in some mothers' emphasis on "fight for our baby" [injustice] and giving the child "a chance like any other baby deserves a chance." Alongside these cultural differences related to faith traditions and healthcare mistrust, authors have suggested that African Americans' history of marginalization and oppression may provide a distinct relationship to and/or understanding of suffering [22,42,47,48]. In particular, past and present experiences of trauma may influence the collective psyche of the black community; suffering may be expected and/or more accepted as a part of life; and psychological or emotional pain may seem equally, or even more, detrimental as physical discomfort. ...
To qualitatively explore perceptions of pain/suffering, disability, and coping by race among pregnant women facing the threat of a periviable delivery (22 0/7–24 6/7 weeks).
Interviews were conducted in-hospital prior to delivery. Transcripts were coded verbatim and responses were stratified by race (white vs non-white). Conventional content analysis was conducted using NVivo 12.
We recruited 30 women (50% white, 50% non-white). Most women expressed love and acceptance of their babies and described pain as a “means to an end.” Non-white women focused almost exclusively on immediate survival and perseverance, while white women expressed concerns about quality of life beyond the NICU. The majority of non-white women were unable to recall any discussions with their doctors about their baby’s comfort, pain, or suffering.
These findings may suggest that culturally tailored approaches to counseling and decision-support may be beneficial for patients from marginalized or minoritized groups.
... Depending on the study, Whites are approximately two to three times more likely to complete ACP than African Americans and Hispanics (Burdsall, 2013;Carr, 2011Carr, , 2012Johnson et al., 2008;Karches et al., 2012). Potential reasons for these racial or ethnic differences may include distrust of physicians and the medical system (Cort, 2004;Institute of Medicine, 2015;Johnson et al., 2008;Noah, 2012); previous negative experiences with a loved one's end-of-life care; lack of knowledge of ACP options (Bullock, 2006); lack of access to health care; or a personal preference for aggressive life-prolonging care (Noah, 2012). ...
... Lack of knowledge about ACP is frequently cited as a reason why people do not complete it (Rao et al., 2014). Although we did not measure knowledge, lack of knowledge of ACP among racial or ethnic minorities may be a barrier to ACP completion (Bullock, 2006). ...
Purpose
To explain and predict racial or ethnic disparities in advance care planning (ACP) behaviors among American adults by using the Integrated Behavioral Model (IBM) and the Precaution Adoption Process Model.
Methods
A randomized, observational, nonexperimental, cross-sectional study design was used to survey American adults between 40 and 80 years of age ( n = 386).
Results
The majority of respondents (75%) had not completed ACP. Significant differences were found by race or ethnicity: 33% of Whites had completed ACP versus Hispanics (18%) and Blacks (8%). Whites had statistically significantly higher levels of most IBM constructs compared with Blacks and Hispanics. The IBM predicted 28% of the variance in behavioral intention. After controlling for sociodemographic variables, direct attitudes, indirect attitudes, and indirect perceived norms were significant predictors of behavioral intention.
Conclusion
The IBM and the Precaution Adoption Process Model are useful frameworks for interventions designed to increase ACP among racial or ethnic minorities in the United States.
... That said, the most successful ACP interventions for Black Americans have been faith and community-based education programs. 27,42,43 Furthermore, there has also been a call for more Black doctors in order to improve the care of Black patients as well as their engagement in adaptive health behaviors, like ACP. 44,45 Studies have shown better rapport between racially concordant patient-physician dyads. 46,47 We also urge for more diverse representation in the medical field, however it will not always be possible to implement racial-concordance between patients and doctors. ...
Objective:
This study aims to quantify and interpret Black-White differences in the factors associated with advance care planning (ACP), with specific attention to self-reported presence of chronic conditions and healthcare stereotype threat (HCST) in medical settings.
Method:
Black and White individuals aged 50 and older (N = 499) were recruited from community centers and assisted living facilities in southern California and on Amazon Mechanical Turk. Six sequential logistic regressions assessed the effect of age, presence of chronic conditions, income, and HCST on predicting 3 components of ACP by race.
Results:
Findings suggest that the awareness of ongoing chronic conditions predicts all 3 aspects of ACP for Whites, but not for Blacks. HCST positively predicts the appointment of a durable power of attorney, but only for Black respondents.
Discussion:
These findings offer a novel perspective on racial disparities in ACP that may inform health care providers and community practices.
... Therefore, it is important to discuss the role of these 3 factors/variables on modifying the association between serious illness preparedness and racial/ethnic identity. Indeed, reviews of literature show that the level of communication with providers, 15,16,82,83 mistrust, 84,85 and perceived discrimination 86,87 are 3 strong predictors of advance care planning, palliative care as well as hospice care among minority populations. This is important for our findings as we uncovered these predictors to be significant for lower serious illness preparedness. ...
Background
Increasing severity of serious illness requires individuals to prepare and make decisions to mitigate adverse consequences of their illness. In a racial and ethnically diverse sample, the current study examined preparedness for serious illness among adults in California.
Methods
This cross-sectional study used data from the Survey of California Adults on Serious Illness and End-of-Life 2019. Participants included 542 non-Hispanic White (52%), non-Hispanic Black (28%), and Hispanic (20%) adults who reported at least one chronic medical condition that they perceived to be a serious illness. Race/ethnicity, socio-demographic factors, health status, discrimination, mistrust, and communication with provider were measured. To perform data analysis, we used logistic regression models.
Results
Our findings revealed that 19%, 24%, and 34% of non-Hispanic White, non-Hispanic Blacks, and Hispanic believed they were not prepared if their medical condition gets worse, respectively. Over 60% indicated that their healthcare providers never engaged them in discussions of their feelings of fear, stress, or sadness related to their illnesses. Results of bivariate analyses showed that race/ethnicity was associated with serious illness preparedness. However, multivariate analysis uncovered that serious illness preparedness was only lower in the presence of medical mistrust in healthcare providers, perceived discrimination, less communication with providers, and poorer quality of self-rated health.
Conclusion
This study draws attention to the need for healthcare systems and primary care providers to engage in effective discussions and education regarding serious illness preparedness with their patients, which can be beneficial for both individuals and family members and increase quality of care.
... Given the low rates of documented ACP overall, our findings suggest that a focus only on a clinician or system-level model of ACP engagement may be inadequate in addressing disparities in ACP among underserved populations. ACP has been successfully promoted in faithbased community organizations for Black and Asian American populations, although these programs have not been widely implemented and may not reach entire communities.[47][48][49] Our results underscore the importance of community-based strategies tailored to the needs of unique neighborhoods-to reach all community-dwelling older adults living in underresourced or disadvantaged communities.29 ...
Importance
Advance care planning (ACP) is low among older adults with socioeconomic disadvantage. There is a need for tailored community-based approaches to increase ACP, but community patterns of ACP are poorly understood.
Objective
To examine the association between neighborhood socioeconomic status (nSES) and ACP and to identify communities with both low nSES and low rates of ACP.
Design, Setting, and Participants
This cross-sectional study examined University of California San Francisco electronic health record (EHR) data and place-based data from 9 San Francisco Bay Area counties. Participants were primary care patients aged 65 years or older and living in the San Francisco Bay Area in July 2017. Statistical analysis was performed from May to June 2020.
Exposures
Patients’ home addresses were geocoded and assigned to US Census tracts. The primary factor, nSES, an index combining area-level measures of income, education, poverty, employment, occupation, and housing or rent values, was divided into quintiles scaled to the distribution of all US Census tracts in the Bay Area (Q1 = lowest nSES). Covariates were from the EHR and included health care use (primary care, outpatient specialty, emergency department, and inpatient encounters in the prior year).
Main Outcomes and Measures
ACP was defined as a scanned document (eg, advance directive), ACP Current Procedural Terminology code, or ACP note type in the EHR.
Results
There were 13 104 patients included in the cohort—mean (SD) age was 75 (8) years, with 7622 female patients (58.2%), 897 patients (6.8%) identified as Black, 913 (7.0%) as Latinx, 3788 (28.9%) as Asian/Pacific Islander, and 748 (5.7%) as other minority race/ethnicity, and 2393 (18.3%) self-reported that they preferred to speak a non-English language. Of these, 3827 patients (29.2%) had documented ACP. The cohort was distributed across all 5 quintiles of nSES (Q1: 1426 patients [10.9%]; Q2: 1792 patients [13.7%]; Q3: 2408 patients [18.4%]; Q4: 3330 patients [25.4%]; Q5: 4148 patients [31.7%]). Compared with Q5 and after adjusting for health care use, all lower nSES quintiles showed a lower odds of ACP in a graded fashion (Q1: adjusted odds ratio [aOR] = 0.71 [95% CI, 0.61-0.84], Q2: aOR = 0.74 [95% CI, 0.64-0.86], Q3: aOR = 0.81 [95% CI, 0.71-0.93], Q4: aOR = 0.82 [95% CI, 0.72-0.93]. A bivariable map of ACP by nSES allowed identification of 5 neighborhoods with both low nSES and ACP.
Conclusions and Relevance
In this study, lower nSES was associated with lower ACP documentation after adjusting for health care use. Using EHR and place-based data, communities of older adults with both low nSES and low ACP were identified. This is a first step in partnering with communities to develop targeted, community-based interventions to meaningfully increase ACP.
... In a study of attitudes, values, and questions of African Americans regarding participation in hospice programs, Taxis (2005) identified three main barriers: (a) a lack of information about hospice and inaccurate assumptions regarding hospice care, (b) cultural barriers resulting from an avoidance of discussions regarding EOL planning, and (c) institutional barriers resulting from a mistrust of the healthcare system. Bullock (2006) reported that even using a faith-based promotion model of advanced care planning, 75% of the 102 African American participants refused to complete advance directives. The participants' decisions were based on such factors as spirituality, view of suffering, dying and death, social support networks, and mistrust of the healthcare system. ...
... Also, informal caregivers providing everyday support may be different from the person nominated to make decisions in end-of-life situations and decisions change over time; therefore practitioners involved in acp need to maintain a good understanding of the network of support used by patients (Dizon et al, 2009); again this is usually an important focus of social work, as compared with nursing and medical, practice. For example, an American study (Bullock, 2006) of African Americans found low take-up of acp because their spirituality which in turn influenced their view of suffering, death and dying, the social support networks available to them leading to a feeling that documentation was not required, practical barriers to recording and transferring an advance decision document between care locations and in particular their and mistrust of the health care system all led to refusals to complete ads. Good trusting relationships between staff and clients are likely to be particularly important in creating an atmosphere in which future planning can be achieved successfully and long-term community engagement is likely to be an important aspect of building trust. ...
O planeamento antecipado de cuidados (acp) comporta processos que permitem descobrir e registar as preferências pessoais relativas a cuidados e tratamentos em situações futuras bem como diferenciar esta planificação da planificação profissional de cuidados a dirigir a um dado indivíduo. Desenvolvido a partir da aplicação de cuidados paliativos sustentados pela gravação das decisões dos doentes referentes à recusa antecipada de tratamento, prevenindo situações de incapacidade cognitiva no final da vida, os processos de acp alargaram-se, recentemente, aos cuidados de saúde e cuidados de protecção social prolongados. Este processo tem como objectivo envolver clientes, famílias e outros cuidadores informais no sentido de se prepararem para pensar antecipadamente acerca das exigências de situações de necessidade de cuidados difíceis. A investigação demonstra que esse processo aumenta a satisfação dos clientes com os serviços e amplia a probabilidade de se verem alcançadas as escolhas de clientes e famílias. O acp é um avanço importante na teorização do serviço social relativamente às questões específicas da prestação de serviços de longa duração, quando o papel destes serviços se perspectivava apenas focalizado na gestão e coordenação dos casos. Este processo, fortalece, também, a participação dos clientes na tomada de decisão sobre os serviços sociais a adequar à sua situação.
... Also, informal caregivers providing everyday support may be different from the person nominated to make decisions in end-of-life situations and decisions change over time; therefore practitioners involved in acp need to maintain a good understanding of the network of support used by patients (Dizon et al, 2009); again this is usually an important focus of social work, as compared with nursing and medical, practice. For example, an American study (Bullock, 2006) of African Americans found low take-up of acp because their spirituality which in turn influenced their view of suffering, death and dying, the social support networks available to them leading to a feeling that documentation was not required, practical barriers to recording and transferring an advance decision document between care locations and in particular their and mistrust of the health care system all led to refusals to complete ads. Good trusting relationships between staff and clients are likely to be particularly important in creating an atmosphere in which future planning can be achieved successfully and long-term community engagement is likely to be an important aspect of building trust. ...
O planeamento antecipado de cuidados (acp) comporta processos que permitem descobrir e registar as preferências pessoais relativas a cuidados e tratamentos em situações futuras bem como diferenciar esta planificação da planificação profissional de cuidados a dirigir a um dado indivíduo. Desenvolvido a partir da aplicação de cuidados paliativos sustentados pela gravação das decisões dos doentes referentes à recusa antecipada de tratamento, prevenindo situações de incapacidade cognitiva no final da vida, os processos de acp alargaram-se, recentemente, aos cuidados de saúde e cuidados de protecção social prolongados. Este processo tem como objectivo envolver clientes, famílias e outros cuidadores informais no sentido de se prepararem para pensar antecipadamente acerca das exigências de situações de necessidade de cuidados difíceis. A investigação demonstra que esse processo aumenta a satisfação dos clientes com os serviços e amplia a probabilidade de se verem alcançadas as escolhas de clientes e famílias. O acp é um avanço importante na teorização do serviço social relativamente às questões específicas da prestação de serviços de longa duração, quando o papel destes serviços se perspectivava apenas focalizado na gestão e coordenação dos casos. Este processo, fortalece, também, a participação dos clientes na tomada de decisão sobre os serviços sociais a adequar à sua situação.
... These differences include prolonged ICU stays, death in the ICU, increased and aggressive interventions at end of life, increased use of restraints, lower rates of comfort measures only, and do-not-resuscitate orders despite imminent death [20,21]. As with other minority and vulnerable groups, uptake of advance care planning (ACP) is also lower [22][23][24][25]. ACP is a process providing people with an opportunity to understand and share their values, goals, preferences, and wishes about future medical care [26]. ...
... Based on an ethnicity-oriented race theory, another possible explanation for the ACP gap could be a systematic or cultural barrier for Black immigrants attempting to integrate into the main society, which may delay access to ACP engagement in later life. Bullock (2006Bullock ( , 2011 highlighted the structural obstacles Blacks face in using health care services and their distrust toward health professionals and certain social systems. Due to the heterogeneity of their populations, findings from Black communities may not perfectly support the current study's findings. ...
Background and objectives:
Advance care planning (ACP) is a critical component of health care affecting the quality of later life. Responding to the increase in the older immigrant population in the United States, this empirical study explored the racial/ethnic gaps in ACP behaviors among older immigrants and examined the end-of-life (EOL) care planning and preferences of foreign-born immigrant older adults focusing on race/ethnicity, acculturation, health need factors, and enabling social factors (financial capability, public assistance, and informal supports) after controlling predisposing factors (sociodemographic characteristics).
Research design and methods:
Using a subsample from the National Health and Aging Trends Study 2011 and 2012, hierarchical logistic regression models of the EOL plan and preferences were examined with 50 multiple imputation data sets (n = 232).
Results:
Descriptive statistics reveal lower ACP engagement of immigrants from racial/ethnic minority groups. In logistic models, however, only Black immigrants were less likely than Whites to have EOL conversations. Among acculturation factors, age at immigration was only negatively associated with having a durable power of attorney for health, but not significantly associated with other ACP behaviors. Instead, health and social factors, primarily need in health and informal support (i.e., number of coresidents and receiving financial help from family members), were associated with different types of ACP components. Receiving public assistance (i.e., receiving Medicaid and SSI) were positively associated with EOL treatment preferences.
Discussion and implications:
Older foreign-born immigrants, in general, showed lower ACP engagement than the overall older population. Moreover, minority immigrants were lower on ACP engagement than both White immigrants. This study highlights the need for formal and informal assistance for enhancing EOL planning for older immigrants. Adding to the culturally competent approach, policy efforts should address social and health factors that accrued throughout individuals' life spans and affect older immigrants' EOL preparation and care.
... For example, our secondary outcome about trusted sources did not specify any options for faith-based sources of information. Community engagement of the public to increase education about healthcare issues particularly minority groups, is increasingly occurring through faithbased congregations and organizations (46,47). It is possible that the question in its current format could not capture this information. ...
Background:
Immigrants to North America receive more interventions at end of life potentially due to knowledge gaps. The primary objective of this study was to measure and describe levels of perceived knowledge about palliative care among immigrants to the United States (US) compared to those born in the US. Our secondary objective was to identify trusted sources for seeking information about palliative care among immigrants and compare these trusted sources with those born in the US. We hypothesized that immigrants would have less knowledge of palliative care than those born in US and would trust different sources for information about palliative care.
Methods:
We analyzed data from the nationally representative 2018 Health Information National Trends Survey (HINTS 5, cycle 2). Questionnaires were administered via mail between January and May 2018 to a population-based sample of adults. The primary outcome of interest was assessed using the item "How would you describe your level of knowledge about palliative care?" The secondary outcome of interest was determined using the item "Imagine you had a strong need to get information about palliative care, which of the following would you most trust as a source of information about palliative care?" Descriptive statistics were calculated, and bivariate analyses run between the outcomes of interest and sociodemographic characteristics (age, sex, education, race/ethnicity, nativity, fluency with English). Multivariable logistic regressions were conducted to assess the role of nativity, controlling for relevant sociodemographic variables. Jackknife weighting was used to generate population-level estimates.
Results:
About 70% of those born in the US and 77% of immigrants (weighted) responded that they had "never heard of palliative care." Trusted sources of palliative care were very similar between the groups (all P>0.05). Both groups' preferred trusted source of palliative care knowledge was "health care provider," with over 80% of respondents in each group selecting this option. Printed materials and social media were the least popular trusted sources among both groups. After adjusting for relevant sociodemographic characteristics, we found no association between poor knowledge of palliative care and nativity (P=0.22). Female respondents had 2.5-fold increased odds of reporting low levels of perceived knowledge of palliative care (OR =2.58, 95% CI, 1.76-3.78; P<0.001). Education was an important predictor of perceived knowledge of palliative care; as education level increased, so did perceived knowledge of palliative care (P<0.001).
Conclusions:
Perceived knowledge of palliative care is poor generally, regardless of birthplace. Trusted sources for palliative care are similar between immigrants and those born in the US. Education is important and is a strong predictor of perceived knowledge of palliative care. Women perceive they have lower levels of knowledge of palliative care (PC) than men. Differences in end of life care between immigrants and non-immigrants cannot be explained by knowledge differences.
... Particularly, lack of comfort discussing death and religious beliefs reduce the willingness of NHBs to complete ACP documents (Johnson et al., 2008). In addition to broader influences of cultural and religious beliefs, many explanations for these racial/ethnic differences in ACP appear to lie in distrust in the medical system and in physicians (Johnson et al., 2008;Noah, 2012), complexities of communication (Noah, 2012), lack of knowledge of ACP options (Bullock, 2006), limited access to healthcare (Herman, 2013;Levi et al., 2010;Rooks et al., 2017), or poorer health status overall (Noah, 2012). ...
Objectives: Although a national consensus exists on the need to increase the rates of advance care planning (ACP) for all adults, racial/ethnic differences in ACP have been consistently observed. This study investigated the intersection of racial/ethnic differences and the number of chronic health conditions on ACP among middle-aged and older adults in the United States.
Method: Responses from 8,926 adults from the 2014 wave of the Health and Retirement Study were entered into multilevel hierarchical logistic regression analyses with generalized linear mixed models to predict ACP focused on assigning a durable power of attorney for healthcare (DPOAHC) and having a written living will after adjusting for covariates.
Results: We found a significant positive relationship between the number of chronic health conditions and ACP. Non-Hispanic Blacks/African Americans and Hispanics were less likely to engage in ACP than non-Hispanic Whites/Caucasians. Racial/ethnic disparities were even starker for completing a living will. The number of chronic health conditions had a greater effect for Hispanics than non-Hispanic Whites/Caucasians on ACP through assigning a DPOAHC and having a living will. The initial disparity in ACP among Hispanics with no chronic health conditions decreased as the number of chronic health conditions increased.
Conclusion: Our findings suggest that more chronic health conditions increase the likelihood that Hispanics will complete ACP documents. These ACP differences should be highlighted to researchers, policymakers, and healthcare professionals to reduce stark racial/ethnic disparities in ACP. A comprehensive and culturally caring decision-making approach should be considered when individuals and families engage in ACP.
... In fact, African Americans are more likely to believe they would be given poorer-quality medical treatment and be treated differently if they completed an advance care directive (Clark et al., 2018;Kagawa-Singer & Blackhall, 2001;McAfee et al., 2017). Also, it has been suggested that a lack of knowledge of advance care planning as well as lower health literacy are reasons for low completion of living wills among minorities (Bullock, 2006;Kermel-Schiffman & Werner, 2017). Another explanation could be that collective decision-making is more prevalent in cultures of observed minorities which could emphasize the role of family input into end-of-life care and be a reason for greater reluctance among minorities to have a living will (Clark et al., 2018). ...
Population ageing poses considerable challenges to the provision of quality end-of-life care. The population of the United States is increasingly diverse, making it imperative to design culturally sensitive end-of-life care interventions. We examined participants of the Health and Retirement Study, who died between 2002 and 2014, to examine racial and ethnic differences in end-of-life care utilization and end-of-life planning in the United States. Our study reveals significant disparities in end-of-life care and planning among studied groups. Findings reveal that racial and ethnic minorities are more likely to die in hospital and less likely to engage in end-of-life planning activities. The observed disparities are still significant but have been narrowing between 2002 and 2014. Efforts to reduce these differences should target both medical professionals and diverse 2 communities to ensure that improved models of care acknowledge heterogeneous values and needs of a culturally diverse US population.
... Studies show that the complexities of health and end-of-life care may be compounded in culturally diverse and interfaith communities if their values do not reflect those of the dominant culture (Kagawa-Singer and Blackhall, 2001). Cultural preferences for non-disclosure of prognosis (Bowman and Singer, 2001;Candib, 2002;Fan and Li, 2004;McGrath et al., 2001;Gafford, 2005a, 2015b); religious, faith-based considerations (Bullock, 2006;Doorenbos and Nies, 2003;Johnson et al., 2005); the experience of migration (Sinclair et al., 2014), collective and familial models of decision-making (Bowman and Singer, 2001;Candib, to the future for overlooking the intersections of ethnicity, religion, gender and class that shape bodies and the horizons of opportunity along which health "choices" are available and decisions made (Cohen et al., 2010;Perkins, 2007;Warin et al., 2015). Power to calculate the futureor to "choreograph" one's death (Perkins, 2007, p. 54) -requires "first of all having a grasp on the present" (Bourdieu, 2000, p. 221). ...
Advance care directives situate persons as rational and self-determining actors who can make anticipatory plans about their futures. This paper critically examines how people interpret individual and future-oriented approaches to medical decision-making with limited access to information and knowledge, and reduced opportunities to prepare and document their care preferences. Based on ethnographic research with Asian migrant families living in Adelaide, South Australia (August 2015-July 2018), it reveals a discord between planning for a finite future and the contingencies and continuities of social life. It unsettles the detached reasoning that is privileged in end-of-life decision-making and reveals limitations to "do-it-yourself" approaches to advance care directives which, it will be argued, not only forecasts potential futures but also forecloses them. Taking Derrida's critique of death and decision-making as a point of departure, it develops the concept of temporal dissonance as a theoretical framework to articulate the tensions that are constituted in advance care directives. The paper suggests that attention to temporal incongruities may help to shed light on the many complex interpretations of advance care directives and the difficulties of promoting them in diverse contexts.
... 32 In African American family culture, having trusted family members voice patient wishes, rather than completing an advance directive, is important. 33,34 There is also a common belief in this population that a distrusted health-care system holds authority for health-care decisionmaking, 3,27,35 leading these families to varying degrees of avoidance, lack of information sharing, and apprehension for fear of exploitation. 36 Despite the enactment of the Patient Self-Determination Act of 1990 that requires Medicare and Medicaid-funded health-care organizations to empower patients to refuse or accept medical care and execute advance directives, 37 and Medicare health-care provider reimbursement for having end-of-life conversations as of January 2016, 38 fewer than 40% of Americans have completed an advance directive. ...
African Americans are perceived to be least likely of all racial and ethnic groups to prepare for the end of life. However, verbal plans for the end of life are of particular importance to this population and may help understand why they are less likely to possess a formal end-of-life care planning document. The purpose of this study was to determine the number of formal and/or informal end-of-life care plans that existed among a convenience sample of African American older adults with dementia. For this descriptive study, data were collected from African American family caregivers (N = 65) of older adults with dementia. Descriptive statistics were conducted. Caregivers in this sample reported high rates of formal and/or informal end-of-life plans for their care recipients. Agency forms (power of attorney, health-care surrogate, or guardianship forms) had been obtained by 74% of the care recipients, while 63% of them possessed a formal end-of-life care planning document. All combined, 88% of the caregivers possessed at least 1 document or verbal information concerning end-of-life care for their care recipient or at least there was an assigned surrogate. Although limited, these findings reflect more end-of-life planning in this population than previous studies reported and could improve the quality of end-of-life outcomes in this population by giving health-care providers increased understanding of African American end-of-life planning preferences. This may, in turn, help the providers to inform and educate these care recipients and their family caregivers.
... Concerns about mistreatment or undertreatment are frequently mentioned as reasons not to engage in ACP by participants in qualitative studies (Blackhall et al., 1999;Bullock, 2006;Bullock et al., 2005;Daaleman & Emmett, 2008;Periyakoil, Neri, & Kraemer, 2015;Rhodes, Batchelor, Lee, & Halm, 2015;Waters, 2001). However, the few quantitative studies that have been conducted have not found that medical mistrust accounts for race disparities in ACP (Carr, 2011;Ejaz, 2000;Huang, Neuhaus, & Chiong, 2016;Ko & Lee, 2014). ...
Background and Objectives
Advance directive completion is associated with end-of-life quality indicators such as dying at home and receiving hospice care. Black older adults are less likely to complete advance directives than their white counterparts. The underlying reasons for these race disparities are not well understood.
Research Design and Methods
In two related studies, data from the Health and Retirement Study were used to examine whether mistrust in health care providers and/or perceived discrimination accounted for lower rates of advance directive completion by black older adults in the United States. Odds of advance directive completion were modeled using logistic regression and multiple measures of trust in health care providers and both medical and nonmedical perceived discriminatory treatment.
Results
In Study 1 (n = 699), controlling for medical mistrust did not reduce the gap between black and white participants’ odds of possessing advance directives. In Study 2 (n = 2,736), higher percentages of black participants reported experiencing medical and nonmedical discriminatory treatment. However, none of the measures of discrimination accounted for black participants’ lower odds of possessing advance directives.
Discussion and Implications
These results call into question the common assertion that mistrust in medical providers or the health care system contributes to lower rates of advance care planning by black older adults. Future research should examine the potential relationships between advance directive completion and other dimensions of discrimination.
... [33][34][35][36][37][38] Communication is a critical component of end-of-life decision making among AAs and their families. 39 The findings from several studies suggest that AAs have limited knowledge regarding some life-prolonging treatments [40][41][42] and do not seek this knowledge out. 43 Furthermore, AAs often do not choose comfort-focused care, because they have limited knowledge of hospice and advance directives. ...
African Americans’ (AA) tendency to choose life-prolonging treatments (LPT) over comfort-focused (CFC) care at end-of-life (EOL) is well documented, however there is limited research that describes AA experiences of EOL care decision-making. The study objective was to describe AA bereaved family members’ experiences of EOL decision-making and their perceptions of the decision to continue or discontinue LPT at EOL. A conceptual framework informed by the literature and the Ottawa Decision Support Framework guided this study. Purposive sampling was used to recruit fifteen AA bereaved family members of AAs who died 2–6 months prior to enrollment from the palliative care program in a safety-net hospital and a large metropolitan church in the Midwest. Decedent mean age 68.7 was years. Participants were selected based on their Decisional Conflict Scale scores. Data were collected by telephone, using a semi-structured interview guide, and analyzed using qualitative descriptive methods and content analysis. Qualitative themes related to AA family members’ experiences in EOL decision-making included understanding, relationships with healthcare providers, and quality of communication. Additional qualitative themes were related to perceptions of the decision to continue LPT (e.g., a lack of understanding) or discontinue LPT (e.g., patient preferences). Religious values and cultural values did not emerge as major themes in relation to family members’ EOL decision-making. This study contributes evidence that quality of communication with healthcare providers plays a critical role for AAs in EOL decision-making, and challenges the majority of the literature that suggests religious and cultural values play prominent roles in AA EOL decision-making.
For many African American adults, the church has the potential to be a place to receive education about advance care planning (ACP). The current study was conducted to (1) identify the frequency of ACP conversations and caregiving and (2) evaluate interest in church-placed end-of-life (EOL) care education. Data were collected from parishioners in 2 African American churches in an urban city in the mid-Atlantic region of the United States. Individuals older than 50 years reported a higher frequency of caregiving (P < .001) and were more likely to have talked to someone about EOL care (P < .001) than individuals younger than 50 years. Nearly all respondents considered EOL conversations "important" or "very important" (99.1%) and wanted more information about EOL conversations available via the church (95.8%). Our findings suggest EOL conversations are happening within families and with health care providers, but they are not documented in ways (eg, in writing) that research has focused on previously. Future EOL education will focus more on the importance of documenting and sharing EOL care wishes with family and health care professionals.
Language access barriers for individuals with limited-English proficiency are a challenge to advance care planning (ACP). Whether Spanish-language translations of ACP resources are broadly acceptable by US Spanish-language speakers from diverse countries is unclear. This ethnographic qualitative study ascertained challenges and facilitators to ACP with respect to Spanish-language translation of ACP resources. We conducted focus groups with a heterogeneous sample of 29 Spanish-speaking persons who had experience with ACP as a patient, family member, and/or medical interpreter. We conducted thematic analysis with axial coding. Themes include: (1). ACP translations are confusing; (2). ACP understanding is affected by country of origin; (3). ACP understanding is affected by local healthcare provider culture and practice; and (4). ACP needs to be normalized into local communities. ACP is both a cultural and clinical practice. Recommendations for increasing ACP uptake extend beyond language translation to acknowledging users' culture of origin and local healthcare culture.
This comprehensive, evidence-informed text provides clinicians, researchers, policy-makers and academicians, with content to inform and enrich the guidelines recommended by the National Consensus Project and the National Quality Forum Preferred Practices. It is designed to meet the needs of health social work professionals who seek to provide culturally sensitive biopsychosocial-spiritual care for patients and families living with life-threatening illness. Edited by two of the leading social work clinician-researchers in the US, this text serves as the definitive resource for practicing clinicians and fulfils the need for social work faculty who wish to complement general health care texts with information specific to palliative and end-of-life care.
This comprehensive, evidence-informed text provides clinicians, researchers, policy-makers and academicians, with content to inform and enrich the guidelines recommended by the National Consensus Project and the National Quality Forum Preferred Practices. It is designed to meet the needs of health social work professionals who seek to provide culturally sensitive biopsychosocial-spiritual care for patients and families living with life-threatening illness. Edited by two of the leading social work clinician-researchers in the US, this text serves as the definitive resource for practicing clinicians and fulfils the need for social work faculty who wish to complement general health care texts with information specific to palliative and end-of-life care.
This comprehensive, evidence-informed text provides clinicians, researchers, policy-makers and academicians, with content to inform and enrich the guidelines recommended by the National Consensus Project and the National Quality Forum Preferred Practices. It is designed to meet the needs of health social work professionals who seek to provide culturally sensitive biopsychosocial-spiritual care for patients and families living with life-threatening illness. Edited by two of the leading social work clinician-researchers in the US, this text serves as the definitive resource for practicing clinicians and fulfils the need for social work faculty who wish to complement general health care texts with information specific to palliative and end-of-life care.
Background
Older adults suffering from traumatic brain injury (TBI) are subject to higher injury burden and mortality. Do Not Resuscitate (DNR) orders are used to provide care aligned with patient wishes, but they may not be equitably distributed across racial/ethnic groups. We examined racial/ethnic differences in the prevalence of DNR orders at hospital admission in older patients with severe TBI.
Methods
We conducted a retrospective cohort study using the National Trauma Databank (NTDB) between 2007 to 2016. We examined patients ≥ 65 years with severe TBI. For our primary aim, the exposure was race/ethnicity and outcome was the presence of a documented DNR at hospital admission. We conducted an exploratory analysis of hospital outcomes including hospital mortality, discharge to hospice, and healthcare utilization (intracranial pressure monitor placement, hospital LOS, and duration of mechanical ventilation).
Results
Compared to White patients, Black patients (OR 0.48, 95% CI 0.35-0.64), Hispanic patients (OR 0.54, 95% CI 0.40-0.70), and Asian patients (OR 0.63, 95% CI 0.44-0.90) had decreased odds of having a DNR order at hospital admission. Patients with DNRs had increased odds of hospital mortality (OR 2.16, 95% CI 1.94-2.42), discharge to hospice (OR 2.08, 95% CI 1.75-2.46), shorter hospital LOS (−2.07 days, 95% CI −3.07 to −1.08) and duration of mechanical ventilation (−1.09 days, 95% CI −1.52 to −0.67). There was no significant difference in the utilization of ICP monitoring (OR 0.94, 95% CI 0.78-1.12).
Conclusions
We found significant racial and ethnic differences in the utilization of DNR orders among older patients with severe TBI. Additionally. DNR orders at hospital admission were associated with increased in-hospital mortality, increased hospice utilization, and decreased healthcare utilization. Future studies should examine mechanisms underlying race-based differences in DNR utilization.
Palliative care is holistic, including biopsychosocial and spiritual dimensions of care. All members of the team must address spiritual needs; much of what patients and significant others want to discuss is spiritual in nature, and spirituality is an important way of coping. Most social workers address spirituality with patients and significant others, but they may not identify the issues they are addressing as spiritual. This underscores the importance of training in this area. This chapter will define spirituality and describe relevant theoretical frameworks, assessment and intervention approaches, and guidelines for referral to a spiritual caregiver.
Background: Family members often take the place of decision-making for elderly individuals. Previous studies showed that family members could not predict elderly individuals’ thoughts about end-of-life care. Objectives: The aims are to understand the differences and perspectives between elderly individuals and surrogates regarding end-of-life care. Design: A mixed methods study comprising a cross-sectional survey and field notes analysis. Setting: Two geriatric wards in a veterans hospital located in northern Taiwan. Subjects: Fifty-five pairs of elderly individuals and their surrogates. Measurements: Life support preferences questionnaire and field notes. Results: The quantitative data showed that the elderly individuals and their surrogates had proper consistency in cardiopulmonary resuscitation and surgery. However, their consistency was poor in antibiotics and nasogastric tube feeding. Four themes were identified in qualitative data: recognizing old age, struggling with hope and peace, worries and concerns, and control of life. Recognizing old age for both elderly individuals and their surrogates was critical. Elderly individuals and their surrogates may seek a ray of hope among aggressive treatments and struggle with hope and peace. A lot of worries and concerns were mentioned, including contextual concerns. Elderly individuals need to depend on their ability to control their life. Conclusions: The study highlights elderly individuals’ and their surrogates’ considerations for antibiotics and nasogastric tube feeding. Furthermore, elderly individuals expressed that it is different for making decisions for themselves or others; thus, future studies can further explore whether elderly individuals allow their surrogates leeway from their wishes.
Objectives
Theoretical and conceptual frameworks are often underutilized in research, which may diminish understanding of the phenomena and contribute to the under-development of interventions. The topic of low/disparate rates of Advance Care Planning (ACP) among African Americans has been researched extensively; however, the use of theoretical and/or conceptual frameworks has not been reported. The purpose of this review is to describe theoretical and/or conceptual frameworks utilized in studies that investigated factors affecting perceptions of ACP or ACP rates among African Americans.
Methods
Utilizing a narrative, literature review process, themes were generated, applied, and described with frequencies across broad categories of study characteristics, framework categories and key constructs, mode of framework application, and quality of framework reporting.
Results
Four main types of frameworks were found with behavioral frameworks dominating the collection of studies. Complex, systems theoretical frameworks were less common. Framework use and reporting quality findings are described.
Significance of results
The problem of disparate rates of ACP among African Americans is nuanced and varied, stemming from both internal (e.g., personal, behavioral) and external factors (e.g., living conditions). While important and necessary to focus on internal, psychological factors, it is also vital to incorporate systems’ theories such as the Cumulative Disadvantage Theory to better understand and demonstrate inherent complexities. Recommendations for framework use are discussed for research and clinical application. Incorporating complexity science approaches and multi-systems theories may support multi-level modeling needed to understand this problem and reduce ACP disparities in this population.
Addressing bias and disparities in counseling and care requires that we contend with dehumanizing attitudes, stereotypes, and beliefs that our society and profession holds towards people of color, broadly, and Black birthing people in particular. It also necessitates an accounting of the historically informed, racist ideologies that shape present-day implicit biases. These biases operate in a distinctly complex and damaging manner in the context of end-of-life care, which centers around questions related to human pain, suffering, and value. Therefore, this paper aims to trace biases and disparities that operate in periviable care, where end-of-life decisions are made at the very beginning of life. We start from a historical context to situate racist ideologies into present day stereotypes and tropes that dehumanize and disadvantage Black birthing people and Black neonates in perinatal care. Here, we review the literature, address historical incidents and consider their impact on our ability to deliver patient-centered periviable care.
Context
Americans express a strong preference for participating in decisions regarding their medical care, yet they are often unable to participate in decision-making regarding their end-of-life care.
Objective
To examine determinants of end-of-life planning; including, the effect of an individual's ageing and dying process, health status and socio-economic and racial/ethnic background.
Methods
US observational cohort study, using data from the Health and Retirement Study (1992 – 2014) including 37,494 individuals. Random-effects logistic regression analysis was used to examine the relationship between the presence of a living will and a range of individual time-varying characteristics, including time to death, and several time-invariant characteristics.
Results
End-of-life planning depends on several patient characteristics and circumstances, with socio-economic and racial/ethnic background having the largest effects. The probability of having a living rises sharply late in life, as we would expect, and is further modified by the patient's proximity to death. The dying process, exerts a stronger influence on end-of-life planning than does the aging.
Conclusions
Understanding differences that increase end-of-life planning is important to incentivize patients’ participation. Advance planning should be encouraged and accessible to people of all ages as it is inevitable for the provision of patient-centered and cost-effective care.
Background:
End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality.
Objective:
To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care.
Methods:
A retrospective observational study was performed on baseline data from a multisite randomized clinical trial of Dignity Therapy in 308 older cancer patients who were receiving outpatient palliative care (PC). Interviews addressed end-of-life treatment preferences, religion, religiosity and spirituality, and awareness of prognosis. End-of-life treatment preferences for care were examined, including preferences for general treatment, cardiopulmonary resuscitation (CPR), and mechanical ventilation (MV). Bivariate associations and multiple logistic regression analysis of treatment preferences with demographic and other baseline variables were conducted.
Results:
Our regression models demonstrated that race was a significant predictor for CPR preference and preferences for MV, although not for general treatment goals. Minority patients were more likely to want CPR and MV than whites. Men were more likely to opt for MV, although not for CPR or overall aggressive treatment, than women. Higher level of education was a significant predictor for preferences for less aggressive care at the end-of-life but not for CPR or MV. Higher level of terminal illness awareness was also a significant predictor for preferences for CPR, but not MV or aggressive care at the end-of-life.
Discussion:
Race was significantly associated with all three markers for aggressive care in bivariate analysis and with two out of three markers in multiple regression analysis, with minorities preferring aggressive care and whites preferring less aggressive care. Contrary to our hypothesis, income was not significantly associated with treatment preferences, whereas religion was significantly associated with all markers for aggressive care in bivariate models, but not in multiple regression models. Clinical Trial Registration Number NCT03209440.
Context
Advance care planning (ACP) is underutilized, especially among Black Americans. Yet, no ACP interventions have been tested at the community level.
Objectives
Within an established academic and community partnership, we sought to determine whether ACP is a community-identified need and if so, to conduct a pilot study of an evidence-based ACP program, PREPARE (PrepareForYourCare.org).
Methods
We conducted open discussions and in-depth interviews to determine the relevance of ACP to the community. We then conducted a pre- to 3-week post pilot study of a virtual peer facilitated brief session to introduce ACP and encourage participants to engage with PREPARE. We conducted thematic content analysis for qualitative data and used paired t-tests to assess within-participant changes in the validated ACP Engagement Survey measured on a 1-5 scale (5=greatest engagement).
Result
We conducted two discussion groups with community leaders (n=12) and key informant interviews (n=6), including leaders in aging, public health, health care and faith. We concluded that ACP is a community priority. In the pilot study, we enrolled 13 Black Americans; 85% were women and the mean age was 59.7 years (SD 15.1). There was a trend toward increased ACP engagement after the peer facilitated PREPARE (mean 3.2 (SD 0.6) pre vs. 3.5 (SD 0.6) post, paired t-test p=0.06). All participants found the intervention to be acceptable and were satisfied with it.
Conclusion
Community members identified ACP as important for their community. Peer facilitated PREPARE program is a promising community-based strategy to increase engagement in ACP and may promote health equity.
Objectives
Most previous studies considered advance directives (AD) as one outcome, which conceals possible variations of individuals’ decisions on two AD documents—living will (LW) and durable power of attorney for health care (PA). To address this issue, this study examined how completions of PA and LW are associated with race, and whether SES and health can partially explain the racial disparities of AD possession.
Methods
The sample included 9,902 older adults from the 2016 wave of the Health and Retirement Study. AD completion was coded as a four-category variable, including no PA or LW, no PA, no LW, and both PA and LW. Race was categorized as non-Hispanic White, non-Hispanic Black, Hispanic, and Asian or Native American. Socioeconomic status (SES) was measured by education and household wealth. Health was indicated by chronic conditions and functional limitations. Multinomial logistic regression models were used to examine the racial effects of AD possession and the effects of SES and health conditions.
Results
Older adults who only have PA or only have LW significantly differed in racial identity, SES and Health. The regression results show that being a racial minority was associated with a lower likelihood to have both ADs and only PA. SES partially buffered racial disparities in AD possession, while the moderation of health was not consistently significant.
Discussion
The findings highlight the importance of examining the completions of two AD documents and indicate the necessity of developing distinct and concrete strategies to promote the completion of PA and LW.
Background
Disparities in hospice and palliative care (PC) for African Americans have been linked to mistrust toward the healthcare system, racial inequalities, and cultural preferences. Spirituality has been identified as important to African Americans in general. Less is known about the influence of spirituality on African American illness experiences.
Objective
The goal of this study was to understand older African Americans’ perspectives on how spirituality influences chronic illness experiences to inform the development of a culturally tailored PC intervention.
Methods
In partnership with 5 churches in the Denver metropolitan area, we conducted focus groups with African American older adults (n = 50) with chronic health conditions and their family caregivers. Transcripts were analyzed using a deductive approach. The theoretical framework for this study draws on psychology of religion research.
Results
Themes referenced participants’ spiritual orienting systems, spiritual coping strategies, and spiritual coping styles. Psycho-spiritual struggles, social struggles, and sources of social support were also identified. Findings suggest African Americans’ spirituality influences chronic illness experiences. Participants relied on their spirituality and church community to help them cope with illness. In addition, social struggles impacted the illness experience. Social struggles included mistrust toward the healthcare system and not being connected to adequate resources. Participants expressed a need to advocate for themselves and family members to receive better healthcare. Churches were referred to as a trusted space for health resources, as well as spiritual and social support.
African Americans (AA) experience health inequalities that affect their utilization of advance care planning (ACP) and hospice and palliative care at end of life (EOL). Faith-based health promotion models may be applicable to ACP and EOL care literacy for this population. The purpose of this integrative review was to examine the literature highlighting participant responses to ACP and EOL care literacy initiatives in AA faith communities. An integrative literature review was conducted using the following databases: PubMed, CINAHL, Web of Science, and PsychINFO. Eight primary sources met inclusion criteria. Findings from these studies indicate that integration of AA religious beliefs and practices into ACP and EOL care educational programs may enhance the efficacy of these efforts in promoting ACP, advance directive completion, and hospice use. Building trust, creating community partnerships, and involving church leadership in ACP and EOL care literacy promotion efforts serve as important elements to inform future initiatives.
Objective:
Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC).
Method:
Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes.
Results:
Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs.
Significance of results:
The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.
Background
African American (AA) church leaders often advise AAs with serious and life-limiting illnesses (LLIs).
Objectives
1) determine beliefs of AA church leaders about palliative care and hospice care (PCHC), 2) assess association of participants’ attitude about encouraging a loved one to learn about PCHC with whether PC or HC is consistent with faith beliefs and can reduce suffering and bring comfort, and 3) evaluate an interactive, educational intervention.
Design
prospective, one group, pre and post assessment of beliefs and attitudes Settings/Subjects: 100 church leaders from 3 AA Churches and one AA Church Consortium.
Results
At baseline, participants held more receptive beliefs about HC than about PC. Those who reported knowing the meaning of PC believed PC is consistent with their faith (81% vs 28%, phi=.53) and can reduce suffering and bring comfort (86% vs 38%, phi =.50). Participants who believed PC was consistent with their faith were more likely to encourage a loved one with a LLI to learn about PCHC than did participants who did not (100% vs 77%, phi =.39, p < 0.001). Post intervention, more participants: 1) perceived that they knew the meaning of PC (48% vs 96%), 2) viewed PC as consistent with their faith (58% vs. 94%), and 3) viewed PC as a means to reduce suffering and bring comfort (67% vs 93%) with a p < 0.0001 for each item. The post intervention results for HC were variable.
Conclusions
Faith beliefs of AA Church leaders may be aligned with the principles of PCHC.
Context:
Racial disparities in rates of hospice use, a marker of quality of end-of-life (EOL) care, have been a long-standing problem. Although distrust has been cited as a main reason for the preference of intensive EOL care among African Americans, the role of trust has not been closely analyzed in predicting EOL care in the context of advance care planning (ACP) outcomes.
Objectives:
The goal of this review was to empirically examine the role of trust in ACP outcomes.
Methods:
For this systematic review, we utilized methods adapted from the GRADE process developed by the Cochrane Collaboration. The research question guiding this review was "What is the quantitative influence of trust in the health care system or health care providers on the ACP process for African Americans?" We searched Medline, Embase, and Web of Science for articles published between 1975 and 2016.
Results:
We identified nine quantitative studies that measured and evaluated trust as a predictor or correlate of ACP preferences. Of the studies, eight were observational and one was a pre-post-test study. Three studies were designated as low quality, and six studies were of moderate quality.
Conclusion:
Distrust has been cited as a central reason for African Americans' tendency to choose life-sustaining treatments over comfort-focused care; however, our findings do not support this hypothesis. The majority of studies found no significant differences in trust between African Americans and their White counterparts. Further, we found that trust was not associated with ACP outcomes in the majority of studies.
Background::
As the spiritual family for many African Americans, the church presents an opportunity to improve communication about palliative care and hospice (PCH). However, sustainable change in church-based, practices related to PCH requires a compreshensive, multilevel approach.
Objectives::
Our primary goal was to encourage churches to embrace palliative care and hospice as acceptable alternatives for end-of-life care by creating venues to improve communications about PCH. This paper compares our experience in 5 churches, revealing lessons learned and the challenges of engaging, implementing, and maintaining a multilevel approach in the churches, and our strategies in response to those challenges.
Design::
Descriptive study Settings/Subjects: We partnered with 5 African American Churches in the Philadelphia Region. We targeted pastors, other church leaders, and congregants.
Methods::
We created 1) a leadership-education program, 2) an intensive training program for church-based lay companions (health visitors), and 3) messages and materials to increase knowledge and influence attitudes about PCH.
Results::
We impacted church structures and policies as shown by: integration of the project activities into existing church structures, new church-based programs dedicated to training lay companions and church leaders, new roles for church members (church liaisons) dedicated to this project, and new materials and messages focusing on PCH for the general congregation.
Conclusions::
We demonstrated the feasibility of engaging the African American church in a comprehensive, multilevel process designed to improve communication about palliative care and hospice (PCH). Our success demonstrates the potential of the African American church as a community resource for lay education about PCH.
Objective
We aimed to explore multiple perspectives regarding barriers to and facilitators of advance care planning (ACP) among African Americans to identify similarities or differences that might have clinical implications.
Method
Qualitative study with health disparities experts ( n = 5), community members ( n = 9), and seriously ill African American patients and caregivers ( n = 11). Using template analysis, interviews were coded to identify intrapersonal, interpersonal, and systems-level themes in accordance with a social ecological framework.
Result
Participants identified seven primary factors that influence ACP for African Americans: religion and spirituality; trust and mistrust; family relationships and experiences; patient-clinician relationships; prognostic communication, care preferences, and preparation and control. These influences echo those described in the existing literature; however, our data highlight consistent differences by group in the degree to which these factors positively or negatively affect ACP. Expert participants reinforced common themes from the literature, for example, that African Americans were not interested in prognostic information because of mistrust and religion. Seriously ill patients were more likely to express trust in their clinicians and to desire prognostic communication; they and community members expressed a desire to prepare for and control the end of life. Religious belief did not appear to negate these desires.
Significance of results
The literature on ACP in African Americans may not accurately reflect the experience of seriously ill African Americans. What are commonly understood as barriers to ACP may in fact not be. We propose reframing stereotypical barriers to ACP, such as religion and spirituality, or family, as cultural assets that should be engaged to enhance ACP. Although further research can inform best practices for engaging African American patients in ACP, findings suggest that respectful, rapport-building communication may facilitate ACP. Clinicians are encouraged to engage in early ACP using respectful and rapport building communication practices, including open-ended questions.
What a privilege it is to be able to touch those sacred spaces in the soul of each person that we encounter every day. Patients with life-threatening illnesses can struggle with physical, emotional, and existential and spiritual concerns and the suffering of caregivers. A key goal of our supportive and palliative care teams is to alleviate patient and caregiver suffering. When caring for patients with advanced and terminal illness the spirituality of each member of the palliative care team becomes a single collective spirituality or soul with common goals, values, and belonging, with a main goal of providing the best care for patients and caregivers in the alleviation of suffering. Embracing the spiritual care into our daily practice is a common effort and a service provided by each member of the team. Our role as members of the collective soul is to preserve human dignity and raise up the broken souls of patients living with life-threatening illness by creating healing environments.
Advance directives provide health-care instruction for incapacitated individuals and authorize who may make health-care decisions for that individual. Identified factors do not explain all variance related to advance directive completion. This study was an analysis of an association between advance directive completion and death attitudes. Surveys that included the Death Attitude Profile—Revised were completed anonymously. Comparisons of means, chi-square, and logistic regression tests were conducted. Among individuals who did not consider themselves religious, the mean death avoidance attitude scores differed significantly among those with advance directives (mean = 1.93) and those without (mean = 4.05) as did the mean approach acceptance attitude scores of those with advance directives (mean = 5.73) and those without (mean = 3.71). Among individuals who do consider themselves religious, the mean escape acceptance attitude scores differed significantly among those with advance directives (mean = 5.11) and those without (mean = 4.15). The complicated relationships among religiosity, advance directives, and death attitudes warrant further study.
This study investigated sociodemographic and psychosocial factors that enhance or impede the completion of advance care planning, analyzing data from the Health and Retirement Study. The analytic subsample included the panel participants who died between 2006 and 2010 and who had answered the psychosocial and lifestyle questionnaire when they were alive. Multinomial logistic regression was executed to answer the research question (N = 1,056). The study found that persons who were older, who were female, who identified themselves as white, and who had higher levels of income and education were more likely to be motivated to complete advance care planning. Having greater sense of control was found to weaken the adverse relationship between being African American and the completion of advance directives. Having cancer, suffering from the illnesses for longer periods of time, and having experience of nursing home institutionalization also predicted the completion of advance care planning. Implications include incorporating a culturally tailored approach for racial/ethnic minorities and using advance directives that are clear and easily understood. In addition, future research needs to include a larger minority population and examine the extent to which variations between racial/ethnic groups exist in relation to advance care planning.
Background
Studies have indicated that family members or health professionals may not know or predict their older relatives’ or patients’ health preferences. Although advance care planning is encouraged for older people to prepare end-of-life care, it is still challenging.
Aim
To understand the experiences and perspectives of older people regarding advance care planning.
Design
A systematic review of qualitative studies and meta-synthesis was conducted.
Data sources
CINAHL, MEDLINE, EMBASE, and PsycINFO databases were searched.
Results
A total of 50 articles were critically appraised and a thematic synthesis was undertaken. Four themes were identified: life versus death, internal versus external, benefits versus burdens, and controlling versus being controlled. The view of life and death influenced older people’s willingness to discuss their future. The characteristics, experiences, health status, family relationship, and available resources also affected their plans of advance care planning. Older people needed to balance the benefits and burdens of advance care planning, and then judge their own ability to make decisions about end-of-life care.
Conclusion
Older people’s perspectives and experiences of advance care planning were varied and often conflicted; cultural differences amplified variances among older people. Truthful information, available resources, and family support are needed to enable older people to maintain dignity at the end of life. The views of life and death for older people from different cultures should be compared to assist health professionals to understand older people’s attitudes toward advance care planning, and thus to develop appropriate strategies to promote advance care planning in different cultures.
Increasingly, the subject of grandparents raising their grandchildren is the focus in social service literature. In this article, the author explores the changing role of grandparents and provides a basis for assessment and intervention in rural communities. Grandmothers who were primary caregivers for at least 1 grandchild in southeastern North Carolina completed qualitative interviews regarding their experiences in transitioning from the role of grandparent to parent. The results suggest that raising grandchildren may cause financial stress, cramped living quarters, role restriction, and social isolation in this population. However, advantages to this role for grandparents can include greater life satisfaction and a positive influence on future generations within the family. Several key assumptions to guide practitioners in both assessing rural families and planning intervention are emphasized.
Qualitative methods are now widely used and increasingly accepted in health research, but quality in qualitative research is a mystery to many health services researchers. There is considerable debate over the nature of the knowledge produced by such methods and how such research should be judged. Antirealists argue that qualitative and quantitative research are very different and that it is not possible to judge qualitative research by using conventional criteria such as reliability, validity, and generalisability. Quality in qualitative research can be assessed with the same broad concepts of validity and relevance used for quantitative research, but these need to be operationalised differently to take into account the distinctive goals of qualitative research.
The purpose of the study was to compare use of invasive cardiovascular procedures among Latino, Asian, African-American, and White patients.
In a cross-sectional study of hospital discharge data, multiple logistic regression was used to model use of coronary artery angiography, bypass graft surgery, and angioplasty among adult Los Angeles County residents discharged from California hospitals between 1986 and 1988 with primary diagnoses consistent with possible ischemic heart disease.
After potential demographic, socioeconomic, and clinical confounders, including hospital procedure volume, were controlled, Latinos were less likely than Whites to undergo angiography (odds ratio [OR] = 0.90) and bypass graft surgery (OR = 0.87). African Americans were less likely to receive bypass graft surgery (OR = 0.62) and angioplasty (OR = 0.80). Asians were as likely as Whites to receive each procedure. The impact of adjustment for hospital procedure volume was greater for Latinos and Asians than for African Americans.
Administrative data suggest that disparities in use of invasive cardiovascular procedures are not limited to African Americans. Hospital procedure volume appears to be an important factor related to such disparities. The causes of racial/ethnic differences in reported procedure rates remain unclear.
To determine whether physician estimates of pain severity are influenced by patient ethnicity.
Prospective cohort study.
UCLA Emergency Medicine Center, a level I trauma center, Los Angeles, Calif.
Hispanic and non-Hispanic white patients presenting to the emergency department with extremity trauma when research assistants were present. Exclusion criteria were patient refusal, altered mentation, or severe injury interfering with the interview process.
The difference between patient and physician estimates of pain severity as assessed on a visual analog scale for Hispanics and non-Hispanic whites.
A total of 138 non-Hispanic white and 69 Hispanic patients participated in the study. The groups differed in language use, insurance status, and proportions suffering occupational injury. There were no differences between non-Hispanic white and Hispanic patients in patient pain assessments (mean, 39.8 mm vs 39.0 mm, respectively; P = .86), physician pain assessments (mean, 33.6 mm vs 29.7 mm; P = .23), or the disparity between patient and physician pain assessments (mean 6.1 mm vs 9.4 mm; P = .38). The degree of disparity between patient and physician pain assessments remained similar for both groups even after controlling for multiple potential confounders.
Physician ability to assess pain severity does not differ for Hispanic and non-Hispanic white patients. Other explanations for a difference in analgesic practice as a function of ethnicity should be explored.
To determine whether physicians' preferences for end-of-life decision-making differ between blacks and whites in the same pattern as patient preferences, with blacks being more likely than whites to prefer life-prolonging treatments.
A mailed survey.
American Medical Association (AMA) and National Medical Association (NMA) databases. To enrich the sample of black physicians, we targeted physicians in the AMA database practicing in high minority area zip codes and graduates of the traditionally black medical schools.
Self-reported physician attitudes toward end-of-life decision-making and preference of treatment for themselves in persistent vegetative state or organic brain disease compared by race, controlling for age and gender.
The 502 physicians (28%) who returned the questionnaire included 280 white and 157 black physicians. With regard to attitudes toward patient care, 58% of white physicians agreed that tube-feeding in terminally ill patients is "heroic," but only 28 % of black physicians agreed with the statement (P < .001). White physicians were more likely than black physicians to find physician-assisted suicide an acceptable treatment alternative (36.6% vs 26.5% of black physicians) (P < .05). With regard to the physicians preferences for future treatment of themselves for the persistent vegetative state scenario, black physicians were more than six times more likely than white physicians to request aggressive treatments (cardiopulmonary resuscitation, mechanical ventilation, or artificial feeding) for themselves (15.4% vs 2.5%) (P < .001). White physicians were almost three times as likely to want physician-assisted suicide (29.3% vs 11.8%) (P < .001) in this scenario. For a state of brain damage with no terminal illness, the majority of all physicians did not want aggressive treatment, but black physicians were nearly five times more likely than white physicians (23.0% vs 5.0%) (P < .001) to request these treatments. White physicians, on the other hand, were more than twice as likely to request physician-assisted suicide (22.5% vs 9.9%), P < .001 in this scenario.
Physicians preferences for end-of-life treatment follow the same pattern by race as patient preferences, making it unlikely that low socioeconomic status or lack of familiarity with treatments account for the difference. Self-denoted race may be a surrogate marker for other, as yet undefined, factors. The full spectrum of treatment preferences should be considered in development of guidelines for end-of-life treatment in our diverse society.
Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants-including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members-were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice. Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. Although there is no "right" way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.
As a result of profound worldwide demographic change, physicians will increasingly care for patients from cultural backgrounds other than their own. Differences in beliefs, values, and traditional health care practices are of particular relevance at the end of life. Health care providers and patients and families may not have shared understandings of the meaning of illness or death and may not agree on the best strategies to plan for the end of life or to alleviate pain and suffering. Good end-of-life care may be complicated by disagreements between physicians and patients, difficult interactions, or decisions the physician does not understand. Challenges may result from cultural differences between the patient's background and traditional medical practice. Values so ingrained in physicians as to be unquestioned may be alien to patients from different backgrounds. Physicians need to be sensitive to cultural differences and to develop the skills necessary to work with patients from diverse backgrounds. Community and cultural ties provide a source of great comfort as patients and families prepare for death. This paper describes two cases that raise issues about cross-cultural end-of-life practice and suggests strategies for negotiating common problems. Physicians should assess the cultural background of each patient and inquire about values that may affect care at the end of life. They should become aware of the specific beliefs and practices of the populations they serve, always remembering to inquire whether an individual patient adheres to these cultural beliefs. Attention to cultural difference enables the physician to provide comprehensive and compassionate palliative care at the end of life.
Assessment of health-related quality of life (HRQL) is important in patients with chronic obstructive pulmonary disease (COPD). Despite the high prevalence of COPD in Germany, Switzerland and Austria there is no validated disease-specific instrument available. The objective of this study was to translate the Chronic Respiratory Questionnaire (CRQ), one of the most widely used respiratory HRQL questionnaires, into German, develop an interviewer- and self-administered version including both standardised and individualised dyspnoea questions, and validate these versions in two randomised studies.
We recruited three groups of patients with COPD in Switzerland, Germany and Austria. The 44 patients of the first group completed the CRQ during pilot testing to adapt the CRQ to German-speaking patients. We then recruited 80 patients participating in pulmonary rehabilitation programs to assess internal consistency reliability and cross-sectional validity of the CRQ. The third group consisted of 38 patients with stable COPD without an intervention to assess test-retest reliability. To compare the interviewer- and self-administered versions, we randomised patients in groups 2 and 3 to the interviewer- or self-administered CRQ. Patients completed both the standardised and individualised dyspnoea questions.
For both administration formats and all domains, we found good internal consistency reliability (Crohnbach's alpha between 0.73 and 0.89). Cross-sectional validity tended to be better for the standardised compared to the individualised dyspnoea questions and cross-sectional validity was slightly better for the self-administered format. Test-retest reliability was good for both the interviewer-administered CRQ (intraclass correlation coefficients for different domains between 0.81 and 0.95) and the self-administered format (intraclass correlation coefficients between 0.78 and 0.86). Lower within-person variability was responsible for the higher test-retest reliability of the interviewer-administered format while between person variability was similar for both formats.
Investigators in German-speaking countries can choose between valid and reliable self-and interviewer-administered CRQ formats.
This qualitative research study explored the personal meaning of suffering to a group of 40 community-dwelling elders, stratified by gender and race.
We recruited 40 informants who were 70 years old or older from the Philadelphia, PA, area for extended qualitative interviews, which elicited their life story and experiences and philosophies about suffering. Cells contained 10 African American men and women and 10 European American men and women each (N = 40). Through analysis of data, we placed elders' experiences of suffering under three general themes: suffering as lack of control, suffering as loss, and the value of suffering.
Informants developed a unique definition, attribution, theory, and theodicy about suffering based on the particularity of the experience as well as how they "fit" suffering into their lives as a whole. Brief case studies illustrate how themes emerged in elders' stories of suffering.
On the basis of this research, it appears that, although they have some similarities, elders' experiences of suffering are unique and incomparable. Similarities concern informants' connection of suffering with finitude. The incomparability of suffering experiences relate to informants' unique personal histories, perceptions, and "cause" of suffering. Through the process of the interview, elders connect the suffering experience to the entirety of the life lived and the story of suffering to the life story.
In the second half of the nineties, a scientific debate about the usefulness of qualitative research in medicine began in the main medical journals as well as the amount of "qualitative" papers published on peer reviewed journals has noticeably increased during these last years. Nevertheless the label of qualitative methodology has been assigned to an heterogeneous collection of studies. Some of them show a complete awareness of the specificity of this kind of research, while others are still largely influenced by the quantitative paradigm prevailing in the medical field. The concern with the rigour and credibility of qualitative methods has lead to the development of a number of checklist for assessing qualitative research. The purposes of this review were to describe the quality of the development of qualitative research in the medical field, focusing on oncology and palliative care, and to discuss the applicability of a descriptive checklist.
A review was conducted on Medline and PsycINFO databases. On the basis of their abstract, papers found have been classified considering: publication year, kind of journal, paper type, data gathering method, sample size and declared methodological approach. A sub sample of the previous papers was than selected and their methodological characteristics were evaluated based on a descriptive checklist.
351 abstracts and 26 full papers were analysed. An increase over time in the number of qualitative studies is evident. While most of the papers before 1999 were published on nursing journals (43%), afterwards also medical journals were largely represented. Psychological journals increased from 7% to 12%. The 22% of studies used a sample size lower than 15 and the 15% did not specify the sample size in the abstract. The methodological approach was also often not specified and the percentage increased in the second time period (from 73% to 80%). Grounded theory was the most employed methodological approach while phenomenology shows a decrease. Interview remains the most used data gathering method in both periods, even if it shows a 10% reductions, while focus group and multiple methods application both increase to 12%. The use of the descriptive checklist on the full text of the 26 papers shows that all the items present a larger percentage of satisfaction after 1 January 1999 than it was for the paper published before 1999. There seems to be two different types of quality criteria: specific and unspecific. The first ones mainly refer to qualitative paradigm (such as the relationship with the subject of research or evidence about how subjects perceived the research) and they are often not satisfied. In contrast unspecific criteria (such as the connection to an existing body of knowledge or systematic data gathering) which are mainly shared with the quantitative paradigm are more frequently satisfied.
In oncology and palliative care the publication of qualitative studies increased during the nineties, reaching its peak in around 2000. The use of descriptive checklists even if it was not easy to apply, allows researchers to get a deeper insight into methodological facets that a global judgement may leave out.
The study examines the role of health beliefs in determining individuals' decisions to complete advance directives, such as living wills or health care proxies, among a population of nursing home residents. Using both quantitative and qualitative data from face-to-face interviews with alert and oriented nursing home residents (n = 35), the study demonstrates that health beliefs are important factors in residents' completion of advance directives. Residents reporting more versus less trust in the medical system were 5.38 times more likely to complete advance directives. Residents reporting a desire for more versus less control in medical decision-making were 8.42 times more likely to complete advance directives. Qualitative data analyses revealed four unique resident 'voices' which help define individual approaches to advance directive completion: 'taking charge,' 'delegating autonomy,' 'denial,' and 'wanting to die.' The results suggest that better understanding of individual health beliefs related to personal autonomy and underlying trust of the medical system is required for not only explaining but also supporting individuals' decisions regarding advance directives.
As a result of profound worldwide demographic change, physicians will increasingly care for patients from cultural backgrounds other than their own. Differences in beliefs, values, and traditional health care practices are of particular relevance at the end of life. Health care providers and patients and families may not have shared understandings of the meaning of illness or death and may not agree on the best strategies to plan for the end of life or to alleviate pain and suffering. Good end-of-life care may be complicated by disagreements between physicians and patients, difficult interactions, or decisions the physician does not understand. Challenges may result from cultural differences between the patient's background and traditional medical practice. Values so ingrained in physicians as to be unquestioned may be alien to patients from different backgrounds. Physicians need to be sensitive to cultural differences and to develop the skills necessary to work with patients from diverse backgrounds. Community and cultural ties provide a source of great comfort as patients and families prepare for death. This paper describes two cases that raise issues about cross-cultural end-of-life practice and suggests strategies for negotiating common problems. Physicians should assess the cultural background of each patient and inquire about values that may affect care at the end of life. They should become aware of the specific beliefs and practices of the populations they serve, always remembering to inquire whether an individual patient adheres to these cultural beliefs. Attention to cultural difference enables the physician to provide comprehensive and compassionate palliative care at the end of life.
African Americans and other minorities underuse palliative and hospice
care, even when they have access to this care. Statistics from the National
Hospice and Palliative Care Organization indicate that African Americans represent
8% of patients who participate in hospice care, as compared with 83% whites.1 Explanations for the underutilization of palliative
care and hospice services by African Americans has engendered much speculation,
but few data have been collected to further the understanding of this important
problem. To provide the basis for solutions to correct this current state
of affairs, reliable data and a broader societal dialogue are needed.
Internists used effective preventive interventions less frequently and ineffective practices more frequently than experts recommend. Internists' use of health promotion and disease prevention activities is associated with habit, attitude, and a lack of adequate knowledge. Younger physician age, general internal medicine practice, and personal health promotion and disease prevention practices were strongly associated with more appropriate use of recommended practices
Over a 4-month period, we convened 12 focus groups, each of which had an average of 6 participants. A full spectrum of persons involved with end-of-life care—physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members—were included (Table 1) (12). Groups were stratified by role. Participants were recruited from Duke University Medical Center, Durham Veterans Affairs Medical Center, and a local community hospice in Durham, North Carolina. Nonphysician providers were recruited from convenience samples generated by e-mail and departmental advertising. Physicians were recruited from the attending staff of the Duke University Medical Center, Department of Medicine. We stratified physicians by level of appointment (assistant, associate, or full professor), randomized the lists, and recruited potential participants in order, ensuring that the final group represented each career level. Patients were recruited by telephone from an ethnically stratified sample enrolled in oncology and HIV clinics. Family members were recruited from a stratified random sample of recently bereaved relatives of Veterans Affairs patients who had died 6 months to 1 year earlier. For each group, we continued to call potential participants until we obtained 6 to 8 participants per group.
Focus groups and interviews were audiotaped and transcribed. We did not use quantitative methods of inter-rater agreement. Instead, we followed a grounded theory approach with a “constant comparisons” method and its related open and axial coding techniques (10–11). During open coding, four investigators independently read an example of a transcript and analyzed it for common and recurrent themes pertaining to qualities of a good death. These summaries were compared for theme agreement and disagreement. One coder used qualitative software (NUDIST, Scolari Sage Publications Software, Thousand Oaks, California) to apply the coding scheme to the remaining transcripts. Throughout the coding process, all four investigators reviewed theme exemplars as a check on coding validity. During axial coding, the investigators developed further conceptual domains by comparing themes within and between transcripts (11). After identifying more than 70 attributes, we collapsed the full list into 6 broad domains. Although the 6 themes are presented as conceptually distinct, attributes overlapped between domains. For example, attention to spiritual concerns may be primarily associated with a process of “completion” but may also affect patients' physical pain.
Objective: To determine patient characteristics associated with the desire for life-sustaining treatments in the event of terminal illness.
Design: In-person survey from October 1986 to June 1988.
Setting: 13 internal medicine and family practices in North Carolina.
Patients: 2,536 patients (46% of those eligible) aged 65 years and older who were continuing care patients of participating practices, enrolled in Medicare. The patients were slightly older than the 65+ general population, 61% female, and 69% white, and most had one or more chronic illnesses.
Measurements and main results: The authors asked the patients whether they would want each of six different treatments (hospitalization, intensive care, cardiopulmonary resuscitation, surgery, artificial ventilation, or tube feeding) if they were to have a terminal illness. The authors combined responses into three categories ranging from the desire for more treatment to the desire for less treatment. After adjustment for other factors, 53% of women chose less treatment compared with 43% of men; 35%ofblacksvs 15% of whites and 23% of the less well educated vs 15% of the better educated expressed the desire for more treatment. High depression scores also were associated with the desire for more treatment (26% for depressed vs 18% for others).
Conclusion: Patients’ choices for care in the event of terminal illness relate to an intricate set of demographic, educational, and cultural factors. These results should not be used as a shortcut to determine patient preferences for care, but may provide new insights into the basis for patients’ preferences. In discussing choices for future life-sustaining care, physicians need to explore with each individual the basis for his or her choices.
Foreword - Larry Culpepper Introduction - William L Miller and Benjamin F Crabtree PART ONE: OVERVIEW OF QUALITATIVE RESEARCH METHODS Primary Care Research - William L Miller and Benjamin F Crabtree A Multimethod Typology and Qualitative Roadmap PART TWO: DISCOVERY: DATA COLLECTION STRATEGIES Sampling in Qualitative Inquiry - Anton J Kuzel Participant Observation - Stephen P Bogdewic Key Informant Interviews - Valerie J Gilchrist PART THREE: INTERPRETATION: STRATEGIES OF ANALYSIS A Template Approach to Text Analysis - Benjamin F Crabtree and William L Miller Developing and Using Codebooks Grounded Hermeneutic Research - Richard B Addison Computer Management Strategies for Text Data - Alfred O Reid Jr PART FOUR: SPECIAL CASES OF ANALYSIS Approaches to Audio and Video Tape Analysis - Moira Stewart Interpreting the Interactions Between Patients and Physicians Historical Method - Miguel Bedolla A Brief Introduction Philosophic Approaches - Howard Brody PART FIVE: PUTTING IT ALL TOGETHER: COMPLETED STUDIES A Qualitative Study of Family Practice Physician Health Promotion Activities - Dennis G Willms, Nancy A Johnson and Norman A White Doctor-Caregiver Relationships - David Morgan An Exploration Using Focus Groups PART SIX: SUMMARY Qualitative Research - Ian McWhinney et al Perspectives on the Future
Libro de metodología cualitativo para investigación en las ciencias sociales. La utilización de la computadora, el uso de datos y la recolección de los mismos. Se describen detalladamente numerosos métodos de datos y análisis.
The status of selected cardiovascular risk factors was ascertained in a consecutive sample of 661 (222 men and 439 women) African-American adults who were screened for the Northeast Oklahoma City Cholesterol Education Program, a church-based cholesterol intervention program. Hypertension was present in 48.4% and 44.7% of men and women, respectively. Average systolic blood pressure levels were similar in men and women (132.0 vs 131.5 mm Hg, P = 0.40) although average diastolic blood pressure levels were higher in men (84.0 vs 81.1 mm Hg; P < .0001). A substantial proportion of the screenees were unaware of their hypertension, and blood pressure normalization (SBP < 140 and DBP < 90 mm Hg) was uncommon in drug-treated hypertensives. Average cholesterol levels were slightly higher in women compared to men (206.0 vs 199.6 mg/dL, P = 0.11). The majority of persons with elevated cholesterol levels (> or = 240 mg/dL) were unaware of their condition and were infrequently treated with cholesterol-lowering drugs. Overweight was highly prevalent, was more common with advancing age, and was related to the presence of hypertension in both men and women. In addition, a strong linear relation between overweight and blood pressure was present in both sexes. Overweight was more common in young men (< 35 years old) compared to age-matched women; however, women were increasingly more overweight than men after 35-44 years of age. In fact, by age 65, 90% of the women were overweight. These data indicate an excessive prevalence and high mean levels of modifiable cardiovascular risk factors in these church-attending African-American adults. Because churches are a central institution in most African-American communities, and their congregations appear to have an excessive cardiovascular disease risk factor burden, churches may be appropriate sites for the implementation of community-based risk factor control programs.
Despite wide popularity and numerous state statutes, living wills have been previously little used. Now the Patient Self Determination Act promises to close the gap. The medical world is obliged to move fast in an attempt to provide good advance planning to patients and to avert the possible negative outcomes of poor advance planning. A good document has the potential to stimulate good doctor-patient discussion and good planning. A model advance directive is proposed which seeks to keep the merits of the original Medical Directive yet modify it according to empirical data on its use by patients. The remodelled directive still provides an instructional section, a durable power of attorney section, a values statement section, and an organ donation section in addition to the illness scenarios section, much as in the Medical Directive. In the illness scenarios section, however, the Health Care Directive makes use of a wider range of scenarios that may be particularly relevant to the elderly or chronically ill and an intervention selection system that includes statements about goals of treatment.
To estimate internists' use of disease prevention and health promotion activities, and to explore demographic, professional, behavioral, psychological, cognitive, and organizational factors associated with the use of such practices.
Mail survey.
A sample of 2610 members and fellows of the American College of Physicians (ACP) participated in the study. They engaged in patient care activities more than 20 hours per week and were stratified by gender and region. They lived in four geographic areas of the United States (Northeast, Southeast, Central, and West), comprising 21 ACP regions.
A questionnaire requesting background information as well as information about personal health; record keeping; use of immunizations (pneumococcal, influenza, tetanus, hepatitis B); use of screening tests and procedures for detecting cancer (breast examination, Papanicolaou smear, stool occult blood test) and other diseases (electrocardiograms, cholesterol level tests, chest radiographs); and behavioral counseling to promote health (in the areas of smoking, exercise, and alcohol and seat belt use).
Internists used effective preventive interventions less frequently and ineffective practices more frequently than experts recommend. Internists' use of health promotion and disease prevention activities is associated with habit, attitude, and a lack of adequate knowledge. Younger physician age, general internal medicine practice, and personal health promotion and disease prevention practices were strongly associated with more appropriate use of recommended practices (P less than 0.01).
Internists' use of disease prevention and health promotion activities falls short of expert recommendations. Programs to improve the delivery of preventive services might be aimed at improving physicians' personal health practices, might be directed toward patients, and might include the development of effective systems to remind physicians.
Two-hundred and fifty three adults in the Atlanta area completed a telephone survey regarding prospective personal use of hospice services. Race was found to be the only personal attribute relevant to a predisposition to use hospice care. Whites were more likely than blacks to have attitudes conducive to the choice of hospice care. Although there is evidence in the literature that black Americans are less likely to use hospice care than are white Americans, there are not yet detailed explanations of personal differences in attitudes toward using hospice care. This article suggests themes for future research on possible racial differences in attitudes toward use of hospice care.
To assess attitudes and practices regarding screening tests and preventive procedures, we surveyed 83 physicians in a hospital-based ambulatory care practice and compared their recommendations with the recommendations in published guidelines, the desires of 188 of their own patients, and the physicians' actual practice patterns on the surveyed patients. The surveyed physicians recommended screening procedures more frequently than the published guidelines in 48 situations and less frequently in 18 situations. Physicians at earlier levels of training tended to recommend more procedures than those who had completed training. Patients desired far more frequent screening than recommended either by their physicians or by the published guidelines. Physicians did not live up to their own recommendations for four of 14 procedures or to published guidelines for five of 14 procedures, with such failure occurring principally in situations where the test or procedure would normally be done personally by the physician.
Historically, the black church has been the preserver and the perpetuator of the black ethos, the radix from which its defining values and norms have been generated, and the autonomous social institution that has provided order and meaning to the black experience in the United States. The traditional ethic of community-oriented service in the black ethos is highly compatible with the communitarian ethic of community medicine. Given this congruence and the much-documented fact that black Americans are an at-risk and under-served group regarding health status indicators and the provision of preventive health care, respectively, the black church is an extremely relevant locus for the practice of community medicine. A number of health programs based in or affiliated with the black church have operated throughout the United States, and these programs, along with the corpus of literature comprising conceptual articles favorable toward such a role for the black church, are reviewed within four areas of community medicine: primary care delivery, community mental health, health promotion and disease prevention, and health policy.
Data from the Manitoba Longitudinal Study on Aging (MLSA) were used to test the hypothesis that self-rated health (SRH) is a predictor of mortality independent of "objective health status" (OHS). Subjects were a random sample of non-institutionalized residents of Manitoba aged 65+ in 1971 (n = 3,128). A single item measure of SRH was obtained during a survey conducted in 1971; a baseline measure of OHS was derived from physician and self-reported conditions and health service utilization data. Occurrence and date of death during the years 1971-1977 were known. Analyses of the data revealed that, controlling for OHS, age, sex, life satisfaction, income and urban/rural residence, the risk of early mortality (1971-1973) and late mortality (1974-1977) for persons whose SRH was poor was 2.92 and 2.77 times that of those whose SRH was excellent. This increased risk of death associated with poor self-rated health was greater than that associated with poor OHS, poor life satisfaction, low income and being male. These findings provide empirical support for the long held, but inadequately substantiated, belief that the way a person views his health is importantly related to subsequent health outcomes.
This study tests a theoretical model linking religiosity, health status, and life satisfaction using data from the National Survey of Black Americans, a nationally representative sample of Blacks at least 18 years old. Findings reveal statistically significant effects for organizational religiosity on both health and life satisfaction, for nonorganizational religiosity on health, and for subjective religiosity on life satisfaction. Analyses of structural invariance reveal a good overall fit for the model across three age cohorts (< or = 30, 31-54, > or = 55) and confirm that assuming age-invariance of structural parameters does not significantly detract from overall fit. In addition, after controlling for the effects of several sociodemographic correlates of religiosity, health, and well-being, organizational religiosity maintains a strong, significant effect on life satisfaction. These findings suggest that the association between religion and well-being is consistent over the life course and not simply an artifact of the confounding of measures of organizational religiosity and health status.
To determine the major conditions and symptoms reported to cause difficulty in 17 physical tasks of daily life and the criterion validity of self-report of diseases given as the causes of the difficulty in functioning, in community-dwelling older people.
Cross sectional analyses of data obtained in an observational cohort study.
Research clinics in four US communities: Winston-Salem, NC, Hagerstown, MD, Pittsburgh, PA, and Sacramento, CA.
5201 community-dwelling people > or = 65 years old.
Arthritis and other musculoskeletal diseases were given as the primary causes of difficulty in performing physical tasks by 49.0% of the participants reporting difficulty in any task, followed by heart disease (13.7%), injury (12.0%), old age (11.7%), lung disease (6.0%), and stroke (2.9%). The self-reports of diseases that caused disability varied by task. Whereas arthritis was given as a cause of difficulty in most of the 17 different tasks, heart and lung disease were more likely to be reported as causing difficulty with activities requiring high aerobic work capacity such as walking one-half mile or doing heavy housework. Stroke was more likely to be reported as causing difficulty with use of the upper extremities and in performing basic activities of daily living. There was a high degree of consistency (91%) between the diseases and symptoms reported to cause disabilities. The percentage of people who reported a disease as the cause of their difficulty performing a task and had independent confirmation of the diagnosis was 85% in men and 71% in women, and varied according to type of disease and the individual's cognitive status and health status.
These data suggest that age-related chronic diseases are important causes of disability in older people but that the type of disability is dependent on the underlying disease that causes the disability. Also, self-report of the cause of disability appears to be generally accurate but is influenced by gender, health status, and type of disease.
A recent message on one of the e-mail bulletin boards sent by a college student read, "I believe that the AIDS virus was developed in government labs for the purpose of controlling black folks." In September 1990, Essence, an African American magazine with a circulation of 900,000, had as a lead article "AIDS: Is It Genocide?" In 1991, the New York Times quoted Clarence Page, African American columnist and Pulitzer prize winner: "You could call conspiracy theories about AIDS and drugs fringe ideas, but they seem, to have a large following among the black intelligentsia. ... [And] you find it at all levels." In April 1992, Lorene Gary explained in Newsweek "Why it's not just paranoia." In that same month, another New York Times article reported: "Bizarre as it may seem to most people, many black Americans believe that AIDS and the health measures used against it are part of a conspiracy to wipe out the black race."4 In February 1992, Science quoted Peter Breggin, director of the Center for the Study of Psychiatry in Bethesda, Maryland, as saying that research on violence "cloaks the intention to identify problem black children and then ... prescribe pacifying drugs."
Most published studies report that few elderly people have recorded advance directives (AD).We studied the effectiveness of
an interdisciplinary intervention designed to help ambulatory frail elders to record AD. In collaboration with physicians
and a trained lay volunteer, a social worker provided information and counseling to the elderly subjects, to their families,
and to their proxies in a series of visits to a geriatric evaluation and management (GEM) clinic.Seventy-one percent of the
subjects recorded AD. Of these, 96% named a proxy, and 83%recorded specific treatment preferences.
African-American (black) and white individuals have been shown to differ in their desire for life-sustaining treatments and their use of living wills for end-of-life care, but the reasons for these differences are unclear. This study was designed to test the hypothesis that these ethnic differences exist because black patients trust the health care system less, fear inadequate medical treatment more, and feel less confident that living wills can give them more control over their terminal care.
Cross-sectional, in-person survey conducted from November 1993 to June 1994.
Two medical oncology clinics with 40% to 50% black patient representation.
Ambulatory cancer patients, 92 black and 114 white, who were awaiting their physician visits and agreed to participate (76% of those eligible). Patients were excluded if they were under age 40 or if they had nonmelanoma skin cancer only.
Black ambulatory cancer patients wanted more life-sustaining treatments (odds ratio [OR] 2.8; 95% confidence interval [CI] 1.4-5.3), and were less likely to want to complete a living will at some time in the future (OR 0.36; 95% CI 0.17-0.75) than were white patients after controlling for socioeconomic variables. However, these differences were not related to lack of trust or fear of inadequate medical treatment in this study population. Both groups of patients trusted the health care system and felt that physicians treated patients equally well. Neither group feared inadequate or excessive medical care, and the majority of both groups agreed that living wills would help them keep control over their terminal care.
Black and white cancer patients make different end-of-life choices, even after adjusting for likely explanatory variables. The other factors that influence decision making remain unclear and need to be further explored if physicians are to understand and help their patients make choices for end-of-life care.
The ethical and legal implications of decisions to withhold and withdraw life support have been widely debated. Making end-of-life decisions is never easy, and when the cultural background of doctor and patient differ, communication about these issues may become even more difficult. In this study, we examined the attitudes of people aged 65 and older from different ethnic groups toward foregoing life support. To this end, we conducted a survey of 200 respondents from each of four ethnic groups: European-American, African-American, Korean-American and Mexican-American (800 total), followed by in-depth ethnographic interviews with 80 respondents. European-Americans were the least likely to both accept and want life-support (p < 0.001). Mexican-Americans were generally more positive about the use of life-support and were more likely to personally want such treatments (p < 0.001). Ethnographic interviews revealed that this was due to their belief that life-support would not be suggested if a case was truly hopeless. Compared to European-Americans, Korean-Americans were very positive regarding life-support (RR = 6.7, p < 0.0001); however, they did not want such technology personally (RR = 1.2, p = 0.45). Ethnographic interviews revealed that the decision of life support would be made by their family. Compared to European-Americans, African-Americans felt that it was generally acceptable to withhold or withdraw life-support (RR = 1.6, p = 0.06), but were the most likely to want to be kept alive on life-support (RR = 2.1, p = 0.002). Ethnographic interviews documented a deep distrust towards the health care system and a fear that health care was based on one's ability to pay. We concluded that (a) ethnicity is strongly related to attitudes toward and personal wishes for the use of life support in the event of coma or terminal illness, and (b) this relationship was complex and in some cases, contradictory.
If discovered at an early stage, non-small-cell lung cancer is potentially curable by surgical resection. However, two disparities have been noted between black patients and white patients with this disease. Blacks are less likely to receive surgical treatment than whites, and they are likely to die sooner than whites. We undertook a population-based study to estimate the disparity in the rates of surgical treatment and to evaluate the extent to which this disparity is associated with differences in overall survival.
We studied all black patients and white patients 65 years of age or older who were given a diagnosis of resectable non-small-cell lung cancer (stage I or II) between 1985 and 1993 and who resided in 1 of the 10 study areas of the Surveillance, Epidemiology, and End Results (SEER) program (10,984 patients). Data on the diagnosis, stage of disease, treatment, and demographic characteristics of the patients were obtained from the SEER data base. Information on coexisting illnesses, type of Medicare coverage, and survival was obtained from linked Medicare inpatient-discharge records.
The rate of surgery was 12.7 percentage points lower for black patients than for white patients (64.0 percent vs. 76.7 percent, P<0.001), and the five-year survival rate was also lower for blacks (26.4 percent vs. 34.1 percent, P<0.001). However, among the patients undergoing surgery, survival was similar for the two racial groups, as it was among those who did not undergo surgery. Furthermore, analyses in which adjustments were made for factors that are predictive of either candidacy for surgery or survival did not alter the influence of race on these outcomes.
Our analyses suggest that the lower survival rate among black patients with early-stage, non-small-cell lung cancer, as compared with white patients, is largely explained by the lower rate of surgical treatment among blacks. Efforts to increase the rate of surgical treatment for black patients appear to be a promising way of improving survival in this group.
This article describes a participatory action research project addressing the problem of African American access to and use of hospice. Qualitative interviews conducted with six African American pastors resulted in the identification of major themes used for development of a scale to measure barriers to hospice. A subsequent quantitative study documenting these barriers was conducted with 127 African American and European Americans. Results of both studies, which were used to further social action efforts in the community, indicated the cultural barriers of differences in values regarding medical care and differences in spiritual beliefs between African Americans and European Americans. Results also indicated institutional barriers, including lack of knowledge of services, economic factors, lack of trust by African Americans in the health care system, and lack of diversity among health care staff. Implications for social work practice and policy are discussed.
This article has no abstract; the first 100 words appear below.
A growing body of compelling and disturbing evidence points to inferior medical care for black Americans, even if they are on an equal economic footing with whites. Differences in access to treatment and the quality of care are at least part of the reason why the rates of death from some diseases are higher among blacks than among whites. In this issue of the Journal, Morrison et al. show that black and Hispanic patients with severe pain are less likely than white patients to be able to obtain commonly prescribed pain medicines, because pharmacies in predominantly nonwhite communities do not . . .
Harold P. Freeman, M.D.
North General Hospital, New York, NY 10035
Richard Payne, M.D.
Memorial Sloan-Kettering Cancer Center, New York, NY 10021
African Americans appear to be less likely to know about advance directives and, even if known, to complete them. This small, exploratory study used a community-centered educational group discussion to assess African Americans' knowledge, attitudes, and utilization of end-of-life care directives before the occurrence of a health crisis. McNemar and paired t tests were computed to detect immediate changes in participants' initial and final perceptions about advance directives before and after the group discussion. Findings indicated further education is needed to clarify the terms used for advance directives. African Americans rely on a family-centered approach to end-of-life decision making, especially in the absence of written advance directives. They are open to community forums to discuss end-of-life care choices if presented the opportunity. Culture plays an essential role in this issue. There is a need for community health nurses to develop community-based educational pr