Hispanic Hospice Patients' Experiences of End-Stage-Restlessness

Background and Purpose: Research suggests that compared to whites, Hispanics are less likely to discuss their end-of-life care preferences and more likely to be referred to hospice following a crisis hospitalization as opposed to by their primary care physician. Although hospice use, advance care planning patterns, and quality of end-of-life care among Hispanics have been studied intensively, research exploring end-of-life experiences of Hispanics enrolled in hospice is limited. Even fewer are studies that explore Hispanic’s patient-centered outcomes such as pain, dyspnea, and restlessness. To address this gap, this study explored the influence of demographic, care planning, symptom-related, and treatment factors on the presence of end-stage-restlessness among white and Hispanic hospice patients. End-stage-restlessness (e.g. agitation, delirium) has been described as the most difficult end-of-life symptom to control without sedation, detrimentally affects quality of death, and causes considerable distress to loved ones.

Methods: This study used data from the 2007 National Home and Hospice Care survey, a nationally representative, cross-sectional survey of U.S. home health and hospice agencies conducted by the CDC. The survey collects data on hospice agencies, staff, services provided, and clients. A group of 143 Hispanic and 285 white hospice discharge patients were matched on sex, age at discharge, and marital status using propensity score, nearest neighbor matching. A broad array of potential predictors (e.g. living will, DNR order, depression, comfort care) were examined using bivariate analysis. Variables significant at the bivariate level were included in the final multivariable model. In addition to race/ethnicity, model covariates consisted of demographics (i.e. race, gender), symptom-related (i.e. pain, dyspnea), and treatment (i.e. palliative sedation) variables. The dependent variable was a binary outcome: whether the patient had restlessness or not. Care planning variables (i.e. living will, advanced directive, DNR) were not included due to bivariate non-significance. Binary logistic regression was used to model the main and interaction effects of the final predictor set on the odds of experiencing end-stage-restlessness.

Results: The binary logistic regression analysis indicated significant increased odds for end-stage-restlessness for Hispanics/Latinos (OR = 1.67, p < .05), patients with difficulty breathing (dyspnea; OR = 2.13, p < .01) and pain (OR = 2.38, p < .01), and patients receiving palliative sedation treatment (OR = 3.05, p < .01). Moreover, the interaction between race/ethnicity and pain was also significant (OR = 3.77, p < .01) owing to Hispanics/Latinos experiencing pain having significantly higher odds of end-stage-restlessness compared with whites and with Hispanics not in pain. 

Conclusions & Implications: Given that the U.S. Hispanic population is growing and aging, their increased risk of experiencing end-stage-restlessness requires the attention of social workers and primary care providers. The associations between symptoms of pain and dyspnea and end-stage-restlessness point to the importance of culturally competent training and management of symptoms often experienced during the dying process, particularly for Hispanic hospice patients in pain, who had the highest odds of end-stage-restlessness. The unexpected positive association for receiving palliative sedation as well as the non-significant association for advanced care planning and end-stage-restlessness warrant further investigation.