Events Leading to Hospital-Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers' Perspectives

Abstract

Background: Approximately 25% of hospice disenrollments in the United States occur as the result of hospitalization, which can lead to burdensome transitions and undesired care. Informal caregivers (e.g., spouses, children) play a critical role in caring for patients on home hospice. Research examining hospital-related disenrollment among these patients is limited. Objective: To understand the events surrounding the hospitalization of patients discharged from home hospice through the perspective of their informal caregivers. Design: Thirty-eight semistructured phone interviews with caregivers were conducted, and data regarding the events leading to hospitalization and hospice disenrollment were collected. Study data were analyzed by using qualitative methods. Setting/Subjects: Subjects included caregivers of 38 patients who received services from one not-for-profit home hospice organization in New York City. Participants were English speaking only. Measurements: Caregiver recordings were transcribed and analyzed by using content analysis. Results: Content analysis revealed four major themes contributing to hospitalization: (1) distressing/difficult-towitness signs and symptoms, (2) needing palliative interventions not deliverable in the home setting, (3) preference to be cared for by nonhospice physicians or at a local hospital, and (4) caregivers not comfortable with the death of their care recipient at home. Over half of all caregivers called 911 before calling hospice. Conclusions: Our study provides insight into the events leading to hospitalization of home hospice patients from the caregivers' perspective. Further research is needed to quantify the drivers of hospitalization and to develop interventions that reduce utilization, while improving care for home hospice patients and their caregivers.

Association Between Nursing Visits and Hospital-Related Disenrollment in the Home Hospice Population

“…6,7 In particular, a transition from home hospice to an acute care hospital (ie, hospital-related disenrollments) is concerning to hospice staff, stressful for caregivers, and often signals challenges in providing end-of-life care at home. 8,9 While factors contributing to hospital-related disenrollments in the home hospice population are complex, reasons vary but include symptoms that are distressing or worrisome to the caregiver, the burden caregivers bear when caring for a dying patient at home, and patients with difficult to manage end-of-life needs. 8,9 Hospice team members and services may play an important role in reducing these care transitions.…”

Caregiver-Reported Quality Measures and Their Correlates in Home Hospice Care

“…10 We hypothesized that higher caregiver-reported patient symptom scores (i.e., ESAS) would be associated with all three outcomes based on our clinical experience caring for this population and past work linking symptoms to poor patient outcomes such as hospitalization. 21,22 We did find that higher caregiver-reported ESAS scores were associated with two of the quality measures, caregiver burden and satisfaction with care, but not with quality of EoL care. This may be a result of the questions on the CEQUEL survey, which captures aspects of quality other than patient symptom burden such as prolongation of death and shared decision making.…”

Factors Associated With Live Discharge of Heart Failure Patients From Hospice

“…Such interventions may help to keep patients with heart failure comfortable at home and avoid emergency situations that lead to hospitalization. Interventions designed to increase training and support for both informal (i.e., family) and formal caregivers (e.g., Home Health Aides) could help to keep patients with heart failure continuously enrolled in hospice (23,24). Collectively, these findings suggest an opening for the development and testing of programs which meet the unique needs of hospice patients with heart failure, and that provide increased support for caregivers during the end-of-life.…”