“Are They Saying It How I'm Saying It?” A Qualitative Study of Language Barriers and Disparities in Hospice Enrollment

Dressler, Gabrielle; Cicolello, Katherine; Anandarajah, Gowri

doi:10.1016/j.jpainsymman.2020.08.019

Cited by 8 publications

(7 citation statements)

References 36 publications

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“…Higher rates of revocation may occur because certain patients are more reluctant to forgo curative treatments (e.g., younger PWD with potentially more years to live), hospices are unable to meet the needs of patients with high symptom and illness burden (e.g., higher number of comorbidities), or hospice providers failing to adapt to the cultural or language needs of the patients (e.g., racial and ethnic minoritized groups). [34][35][36] Hospices' incentives and capacity to support PWD may help to explain why hospice organizational characteristics (smaller, newer, and for-profit) were associated with higher likelihood of disenrollment due to revocation but not extended prognosis. Evidence indicates that forprofit hospices provide fewer visits with less experienced staff.…”

Section: Discussionmentioning

confidence: 99%

“…For disadvantaged groups, hospice may be used as a “backdoor” to accessing additional supports and services, such as personal care aides, which are not widely available through Medicare or otherwise, although this hypothesis needs to be examined in future research. Higher rates of revocation may occur because certain patients are more reluctant to forgo curative treatments (e.g., younger PWD with potentially more years to live), hospices are unable to meet the needs of patients with high symptom and illness burden (e.g., higher number of comorbidities), or hospice providers failing to adapt to the cultural or language needs of the patients (e.g., racial and ethnic minoritized groups) 34–36 …”

Section: Discussionmentioning

confidence: 99%

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A national study of disenrollment from hospice among people with dementia

Hunt

Gan

Boscardin

et al. 2022

J American Geriatrics Society

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Background: People with dementia (PWD) are at high risk for hospice disenrollment, yet little is known about patterns of disenrollment among the growing number of hospice enrollees with dementia. Design: Retrospective, observational cohort study of 100% Medicare beneficiaries with dementia aged 65 and older enrolled in the Medicare Hospice Benefit between July 2012 and December 2017. Outcome measures included hospiceinitiated disenrollment for patients whose rate of decline ceased to meet the Medicare hospice eligibility guideline of "expected death within 6 months" (extended prognosis) and patient-initiated disenrollment (revocation). Hospice, regional, and patient risk factors and variation were assessed with multilevel mixed-effects logistic regression models. Results: Among 867,695 hospice enrollees with dementia, 70,945 (8.2%) were disenrolled due to extended prognosis and 43,133 (5.0%) revoked within 1-year of their index admission. There was substantial variation in hospice provider disenrollment due to extended prognosis (10th-90th percentile 4.5%-14.6%, adjusted median odds ratio (MOR) 1.86, 95% confidence interval (CI) 1.82, 1.91) and revocation (10th-90th percentile 2.5%-10.1%, MOR 2.09, 95% CI 2.03, 2.14). Among hospital referral regions (HRR), there was more variation in revocation (10th-90th percentile 3.5%-7.6%, MOR 1.4, 95% CI 1.34, 1.47) than extended prognosis (10th-90th percentile 7.0%-9.5%, MOR 1.23, 95% CI 1.18, 1.27), with much higher revocation rates noted in HRRs located in the Southeast and Southern California. A number of patient and hospice characteristics were associated with higher odds of both types of disenrollment (younger age, female sex, minoritized race and ethnicity, Medicaid dual eligibility, Medicare Part C enrollment), while some were associated with revocation only (more comorbidities, newer, smaller, and for-profit hospices). Conclusions:In this nationally representative study of hospice enrollees with dementia, hospice disenrollment varied by type of hospice, geographic region, and patient characteristics including age, sex, race, and ethnicity. These findings raise important questions about whether and how the Medicare Hospice Benefit could be adapted to reduce disparities and better support PWD.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

A national study of disenrollment from hospice among people with dementia

Hunt

Gan

Boscardin

et al. 2022

J American Geriatrics Society

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“…This is supported by previous research that cites language incongruency as a reason why Latinos distrust hospice. 12,35,36 Our study adds to this literature by finding that even participants who spoke English preferred EOL care conversations in Spanish, due to the emotional stress of doing English-Spanish mental translations, while attending to the emotional nature of the conversation. Our study also supports other studies that show that perceived “blunt” discussions of death and cultural differences in caring for family members impact rejection of hospice services.…”

Section: Discussionmentioning

confidence: 71%

“…11 Language discordance is well studied as a contributor to disparities in healthcare, including EOL care. 12 For instance, offering EOL discussions in the preferred language of Latinos correlates with meaningful, early conversations about EOL wishes. 13 This is supported by studies of medical interpreters and limited English proficiency (LEP) Latinos.…”

Section: Introductionmentioning

confidence: 99%

Exploring the Beliefs, Values, and Understanding of Quality End-of-Life Care in the Latino Community: A Spanish-Language Qualitative Study

Marin

Oliva

Anandarajah

2023

Am J Hosp Palliat Care

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Context: Hospice services are underutilized by the Latino community in the United States. Previous research has identified that language is a key barrier contributing to disparities. However, very few studies have been conducted in Spanish to specifically explore other barriers to hospice enrollment or values related to end-of-life (EOL) care in this community. Here, we remove the language barrier in order to gain an in-depth understanding of what members of the diverse Latino community in one state in the USA considers high quality EOL and barriers to hospice. Methods: This exploratory semi-structured individual interview study of Latino community members was conducted in Spanish. Interviews were audio-recorded, transcribed verbatim and translated to English. Transcripts were analyzed by three researchers, using a grounded-theory approach to identify themes and sub-themes. Main Findings: Six major themes emerged: (1) concept of “a good death”—spiritual peace, family/community connection, no burdens left behind; (2) centrality of family; (3) lack of knowledge about hospice/palliative care; (4) Spanish language as critical; (5) communication style differences; and (6) necessity for cultural understanding. The central theme of “a good death” was closely linked to having the entire family physically and emotionally present. The four other themes represent interrelated, compounding barriers to achieving this “good death.” Principal Conclusions: Healthcare providers and the Latino community can work together to decrease hospice utilization disparities by: actively involving family at every step; addressing misconceptions regarding hospice; conducting important conversations in Spanish; and improving provider skills in culturally sensitive care, including communication style.

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“…Researchers have found that language barriers between hospice clinicians and Spanish-speaking Hispanic patients with limited English proficiency can result in poor communication during hospice decision making. 54,55 Black patients are more likely to have a preference for life-sustaining care when seriously ill—not aligned with the goals of hospice care. 56,57 In addition, mistrust of the medical care system poses a barrier to navigating sensitive discussions inherent to end-of-life care decision making.…”

Section: Discussionmentioning

confidence: 99%

Symptom Burden and Activity of Daily Living (ADL) Dependency Among Home Health care Patients Discharged to Home Hospice

Osakwe

Oni-Eseleh

Bianco

et al. 2022

Am J Hosp Palliat Care

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Background: We sought to examine sociodemographic and clinical characteristics present on admission to HHC associated with discharge to hospice. Methods: We used a 5% random sample of 2017 national Outcome and Assessment Information Set (OASIS) data. A Cox proportional hazards regression model was estimated for the primary outcome (discharge to hospice) to examine the associations with sociodemographic and clinical characteristics of HHC patients. Results: Among 489, 230 HHC patients, 4268 were discharged to hospice. The median (interquartile range) length of HHC stay for patients discharged to hospice care was 33 (14-78) days. Compared to White patients, Black, Hispanic, and other race, (hazard ratio [HR] = .50 [95% confidence interval, CI = .44–.57]), (HR = .53 [95% CI = .46–.62]), and (HR = .49 [95% CI = .40–.61], respectively) was associated with shorter time to discharge to hospice care. Clinical characteristics including severe dependence in activities of daily (ADL) (HR = 1.68 [95% CI = 1.01–2.78]), cognitive impairment (HR = 1.10 [95% CI = 1.01–1.20]), disruptive behavior daily (HR = 1.11 [95% CI = 1.02–1.22]), and inability to feed oneself (HR = 4.78, 95% CI = 4.30, 5.31) was associated with shorter time to discharge to hospice. Symptoms of anxiety daily (HR = 1.55 [95% CI = 1.43–1.68]), and pain daily or all the time (HR = 1.54 [95% CI = 1.43–1.64]) were associated with shorter time to discharge to hospice. Conclusions: High symptom burden, ADL dependency, and cognitive impairment on admission to HHC services was associated with greater likelihood of discharge to hospice.

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“Are They Saying It How I'm Saying It?” A Qualitative Study of Language Barriers and Disparities in Hospice Enrollment

Cited by 8 publications

References 36 publications

A national study of disenrollment from hospice among people with dementia

A national study of disenrollment from hospice among people with dementia

Exploring the Beliefs, Values, and Understanding of Quality End-of-Life Care in the Latino Community: A Spanish-Language Qualitative Study

Symptom Burden and Activity of Daily Living (ADL) Dependency Among Home Health care Patients Discharged to Home Hospice

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