Racial/Ethnic Minority Access to End-of-Life Care: A Conceptual Framework

Laguna, Jeff; Enguídanos, Susan; Siciliano, Maria; Kogan, Alexis Coulourides

doi:10.1080/01621424.2011.641922

Cited by 14 publications

(53 citation statements)

References 125 publications

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“…These disparities are likely indicative of variations in physician knowledge of, familiarity with, and perspectives regarding hospice. Consistent with this, there are well-documented, widespread variations in patients' perceptions and usage of hospice, 19,[49][50][51][52][53][54] with recent work also identifying such disparities among physicians. 55,56 Given the widely accepted benefits of hospice, our findings suggest significant discrepancies among physicians in providing quality end-of-life care to patients with advanced cancer.…”

Section: Discussionmentioning

confidence: 69%

Variations Among Physicians in Hospice Referrals of Patients With Advanced Cancer

Wang

Knight

Evans

et al. 2017

JOP

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Purpose: The benefits of hospice for patients with end-stage disease are well established. Although hospice use is increasing, a growing number of patients are enrolled for ≤ 7 days, a marker of poor quality of care and patient and family dissatisfaction. In this study, we examined variations in referrals among individuals and groups of physicians to assess a potential source of suboptimal hospice use. Methods: We conducted a retrospective chart review of 452 patients with advanced cancer referred to hospice from a comprehensive cancer center. We analyzed patient length of service (LOS) under hospice care, looking specifically at median LOS and percent of short enrollments (%LOS ≤ 7), to examine the variation between individual oncologists and divisions of oncologists. Results: Of 394 successfully referred patients, median LOS was 14.5 days and %LOS ≤ 7 was 32.5%, consistent with national data. There was significant interdivisional variation in LOS, both by overall distribution and %LOS ≤ 7 ( P < .01). In addition, there was dramatic variation in median LOS by individual physician (range, 4 to 88 days for physicians with five or more patients), indicating differences in hospice referral practices between providers (coefficient of variation > 125%). As one example, median LOS of physicians in the Division of Thoracic Malignancies varied from 4 to 33 days, despite similarities in patient population. Conclusion: Nearly one in three patients with cancer who used hospice had LOS ≤ 7 days, a marker of poor quality. There was significant LOS variability among different divisions and different individual physicians, suggesting a need for increased education and training to meet recommended guidelines.

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Section: Discussionmentioning

confidence: 69%

Variations Among Physicians in Hospice Referrals of Patients With Advanced Cancer

Wang

Knight

Evans

et al. 2017

JOP

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“…28 The development of this framework was built on a conceptual model of factors influencing death at home by Gomes and Higginson 12 and relevant health service models that include the impact of a service component on either end-of-life care outcomes or service access/ utilisation. 14,[29][30][31][32][33][34] The service components that could potentially influence where people die and their organisation were identified from and guided by these models.…”

Section: Conceptual Frameworkmentioning

confidence: 99%

The role of service factors on variations in place of death: an observational study

Gao

Chukwusa

Verne

et al. 2019

Health Serv Deliv Res

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Background Previous studies have revealed that there is significant geographical variation in place of death in (PoD) England, with sociodemographic and clinical characteristics explaining ≤ 25% of this variation. Service factors, mostly modifiable, may account for some of the unexplained variation, but their role had never been evaluated systematically. Methods A national population-based observational study in England, using National Death Registration Database (2014) linked to area-level service data from public domains, categorised by commissioning, type and capacity, location and workforce of the services, and the service use. The relationship between the service variables and PoD was evaluated using beta regression at the area level and using generalised linear mixed models at the patient level. The relative contribution of service factors at the area level was assessed using the per cent of variance explained, measured by R2. The total impact of service factors was evaluated by the area under the receiver operating characteristic curve (AUC). The independent effect of service variables was measured at the individual level by odds ratios (ORs). Results Among the 431,735 adult deaths, hospitals were the most common PoD (47.3%), followed by care homes (23.1%), homes (22.5%) and hospices (6.1%). One-third (30.3%) of the deaths were due to cancer and two-thirds (69.7%) were due to non-cancer causes. Almost all service categories studied were associated with some of the area-level variation in PoD. Service type and capacity had the strongest link among all service categories, explaining 14.2–73.8% of the variation; service location explained 10.8–34.1% of the variation. The contribution of other service categories to PoD was inconsistent. At the individual level, service variables appeared to be more useful in predicting death in hospice than in hospital or care home, with most AUCs in the fair performance range (0.603–0.691). The independent effect of service variables on PoD was small overall, but consistent. Distance to the nearest care facility was negatively associated with death in that facility. At the Clinical Commissioning Group level, the number of hospices per 10,000 adults was associated with a higher chance of hospice death in non-cancer causes (OR 30.88, 99% confidence interval 3.46 to 275.44), but a lower chance of hospice death in cancer causes. There was evidence for an interaction effect between the service variables and sociodemographic variables on PoD. Limitations This study was limited by data availability, particularly those specific to palliative and end-of-life care; therefore, the findings should be interpreted with caution. Data limitations were partly due to the lack of attention and investment in this area. Conclusion A link was found between service factors and PoD. Hospice capacity was associated with hospice death in non-cancer cases. Distance to the nearest care facility was negatively correlated with the probability of a patient dying there. Effect size of the service factors was overall small, but the interactive effect between service factors and sociodemographic variables suggests that high-quality end-of-life care needs to be built on service-level configuration tailored to individuals’ circumstances. Future work A large data gap was identified and data collection is required nationally on services relevant to palliative and end-of-life care. Future research is needed to verify the identified links between service factors and PoD. Funding The National Institute for Health Research Health Services and Delivery Research programme.

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“…Thus, culture influences the use of healthcare at the end-of-life. Issues influenced by culture that create barriers to palliative care include language and communication barriers, religion and spirituality, responses to inequities in care, and family involvement with decision making (Kagawa-Singer & Blackhall, 2001; Laguna, Enguídanos, Siciliano, & Coulourides-Kogan, 2012; Siriwardena & Clark, 2004). Several factors contributing to limitations in language differences include limited use of medical interpreters and paucity of patient-centered and culturally aligned literature regarding hospice or palliative care in other languages.…”

Section: Introductionmentioning

confidence: 99%

Methods for overcoming barriers in palliative care for ethnic/racial minorities: a systematic review

Mayeda

Ward

2019

Pall Supp Care

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ObjectivesEthnic/racial minority groups are less likely to discuss issues involving end-of-life treatment preferences and utilize palliative care or hospice services. Some barriers may be differences in language, religion, lower levels of health literacy, or less access to healthcare services and information. The purpose of this article is to conduct a systematic review on interventional studies that investigated methods to overcome the barriers faced by ethnic/racial minorities when accessing end-of-life services, including completing advanced directives, accepting palliative care, and enrolling in hospice.MethodsLiterature searches using four standard scientific search engines were conducted to retrieve articles detailing original research in an interventional trial design. All studies were conducted in an outpatient setting, including primary care visits, home visits, and dialysis centers. Target populations were those identified from ethnic or racial minorities.ResultsNine articles were selected to be included in the final review. All were full-text English language articles, with target populations including African Americans, Hispanic or Latinos, and Asian or Pacific Islanders. Measured outcomes involved level of comfort in discussing and knowledge of palliative care services, desire for aggressive care at the end-of-life, completion of advance directives, and rate of enrollment in hospice.Significance of ResultsThree main avenues of interventions included methods to enhance patient education, increase access to healthcare, or improve communication to establish better rapport with target population. Studies indicate that traditional delivery of healthcare services may be insufficient to recruit patients from ethnic/racial minorities, and outcomes can be improved by implementing tailored interventions to overcome barriers.

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Racial/Ethnic Minority Access to End-of-Life Care: A Conceptual Framework

Cited by 14 publications

References 125 publications

Variations Among Physicians in Hospice Referrals of Patients With Advanced Cancer

Variations Among Physicians in Hospice Referrals of Patients With Advanced Cancer

The role of service factors on variations in place of death: an observational study

Methods for overcoming barriers in palliative care for ethnic/racial minorities: a systematic review

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