How do enrollees feel about support in Big Hospices? - The caregiver experience of emotional, spiritual, and bereavement support by profit status among large US providers

Abstract

Objectives: Recent findings narrate profiteering detrimentally impacting hospice care quality. However, no study has examined the caregiver experience of emotional and spiritual support expressed online. The purpose was to evaluate the hospice caregiver's experience of emotional, spiritual, and bereavement support and whether the care was respectful and compassionate to the care unit.

Methods: Retrospective mixed methods of sentiment and quantitative analysis. Sources were online caregiver reviews (n = 4,279), Consumer Assessment of Healthcare Providers and Systems (CAHPS) data on the 50 largest US hospices.

Results: Caring and compassionate professionals were lauded in nonprofit (+.57) and for-profit settings (+.46). The nonprofit experience was in the excellent range (+42) for emotional, spiritual, and bereavement support but fell to dissatisfying (-.15) among for-profits. A respectful experience (16%) was much less commonly expressed than a compassionate one (38%). Distribution of CAHPS "Treating patient with respect" (M = 89.62, SD = 2.63) and "Emotional and spiritual support" (M = 89.80, SD = 2.04) limited inter-hospice comparisons.

Significance of results: Compassionate professionals were thanked and praised regardless of profit status. Sadly, anger was expressed toward large, for-profits more fixated on census than emotional, spiritual, and bereavement support; thankfully nonprofits were more supportive. CAHPS items for "Treating patient with respect" and "Emotional, spiritual support" offer limited discriminating value since low CAHPS performers always had relatively high scores on these 2, yet otherwise low scores on the remaining 6. Online reviews on the same topics provide a more substantive and realistic appraisal - distinguishing high from low performers. A higher bar than mere respect is needed for the tender experience of death, dying, and grieving. Compassion is an especially relevant addition to CAHPS since caregivers named compassionate staff as a distinguishing factor. Parity for mental health at end of life is a vital research topic. Future research should also explore the caregiver expectations set on admission.

Keywords: Big Hospice; CAHPS® scores; Consumer Assessment of Healthcare Providers and Systems; caregiver experience; emotional support; profit status; spiritual support.