Layla Parast1, Marc N Elliott1, Ann Haas2, Joan Teno3, Melissa Bradley4, Robert Weech-Maldonado5, Rebecca Anhang Price4. 1. RAND Corporation, Santa Monica, California, USA. 2. RAND Corporation, Pittsburgh, Pennsylvania, USA. 3. Oregon Health and Science University, Portland, Oregon, USA. 4. RAND Corporation, Arlington, Virginia, USA. 5. Department of Health Services Administration, University of Alabama at Birmingham, Birmingham, Alabama, USA.
Abstract
Background: A major goal of hospice care is to provide individually tailored emotional and spiritual support to caregivers of hospice patients. Objectives: Examine the association between reported emotional support and caregivers' overall rating of hospice care, overall and by race/ethnicity/language. Subjects: We analyzed survey data corresponding to 657,805 decedents/caregivers who received care from 3160 hospice programs during January 2017-December 2018. Measurements: Linear regression models examined the association between caregiver-reported receipt of emotional and spiritual support ("too little" vs. "right amount" vs. "too much") and overall rating of the hospice (0 vs. 100 rating). Interaction terms assessed variation in this association by race/ethnicity/language. Results: "Too much" emotional support was less common than "too little," except for caregivers of Hispanic decedents responding in Spanish. "Too little" support was strongly associated with lower hospice ratings for all groups (compared to "right amount" of support, p < 0.001). In contrast, the negative association between "too much" support and hospice rating was much smaller (p < 0.001) among caregivers of white and black decedents. "Too much" support was associated with more positive ratings among caregivers of Hispanic decedents (p < 0.001). Conclusions: Receipt of "too much" support is a less common and much weaker driver of poor hospice ratings than receipt of "too little" support for all groups, and is not always viewed negatively. This suggests that for hospice evaluation, "too much" support should not be scored equivalently to "too little" support and that providing enough support should be a hospice priority.
Background: A major goal of hospice care is to provide individually tailored emotional and spiritual support to caregivers of hospice patients. Objectives: Examine the association between reported emotional support and caregivers' overall rating of hospice care, overall and by race/ethnicity/language. Subjects: We analyzed survey data corresponding to 657,805 decedents/caregivers who received care from 3160 hospice programs during January 2017-December 2018. Measurements: Linear regression models examined the association between caregiver-reported receipt of emotional and spiritual support ("too little" vs. "right amount" vs. "too much") and overall rating of the hospice (0 vs. 100 rating). Interaction terms assessed variation in this association by race/ethnicity/language. Results: "Too much" emotional support was less common than "too little," except for caregivers of Hispanic decedents responding in Spanish. "Too little" support was strongly associated with lower hospice ratings for all groups (compared to "right amount" of support, p < 0.001). In contrast, the negative association between "too much" support and hospice rating was much smaller (p < 0.001) among caregivers of white and black decedents. "Too much" support was associated with more positive ratings among caregivers of Hispanic decedents (p < 0.001). Conclusions: Receipt of "too much" support is a less common and much weaker driver of poor hospice ratings than receipt of "too little" support for all groups, and is not always viewed negatively. This suggests that for hospice evaluation, "too much" support should not be scored equivalently to "too little" support and that providing enough support should be a hospice priority.