Providing End-of-Life Care for Patients With Left Ventricular Assist Devices: Experience of a Hospice Agency.

CONTEXT: Patients with left ventricular assist devices (LVADs) need expert palliative care at the end of life. In the U.S., hospice may provide this care, but few patients enroll, and information about hospice experience with LVAD-implanted patients is limited. OBJECTIVE: To describe hospice experience with LVAD-implanted patients. METHODS: This is a retrospective descriptive study of all LVAD-implanted patients admitted to a hospice agency. Data were extracted from the electronic health record. RESULTS: The 13 patients had a mean age of 63 years (range 20-89) and a mean LVAD duration of 32.5 months (range 8.2-70.0). Hospice diagnosis was heart failure in 10 patients and cancer in three patients; all patients were multimorbid. Eight patients enrolled in hospice on one occasion, four had two enrollments, and one had five. All patients received services for <180 days, three for <7 days, and four patients for >90 days. Just-in-time inservicing was used to prepare hospice teams for challenging care needs, including bleeding, delirium, infections, and mechanical failure. Of the nine patients who died while receiving hospice services, one enrolled with a plan to deactivate the LVAD immediately after hospice enrollment, and six died after discontinuation of the LVAD or other life-sustaining therapy during the course of hospice care. Five deaths occurred in a hospice inpatient unit. CONCLUSION: To provide specialist palliative care to LVAD-implanted patients, hospices must be prepared to manage complex and highly varied needs. To do this, hospices must have adequate staff support and access to acute care.

Pain-related distress among patients referred to a community-based palliative care program.

OBJECTIVE: Numerous studies have characterized the pain reported by patients with advanced illness in terms of descriptors such as severity, but few have measured pain-related distress. Distress may be important in the clinical approach to pain. To evaluate pain-related distress among adult patients with advanced illness and pain following enrollment in an urban, specialist-level, community-based palliative care program. METHOD: In a retrospective cross-sectional analysis, data were extracted from the electronic health records of all patients who were able to complete the pain item from the Condensed Memorial Symptom Assessment Scale at the start of care. Bivariate and multivariate analyses evaluated the associations between distress and both sociodemographics and disease-related information. RESULTS: The 506 patients completing the pain item had a mean (SD) age of 70.7 years (13.8); 64.2% were women, 32.1% were Hispanic, 32.6% were white, and 27.7% were black. Of the 503 patients who indicated some level of distress on a 0-4 scale, 221 (43.7%) had high distress, defined as a score ≥3 ("quite a bit" or "very much"). Cancer diagnosis and poor performance status (unable to care for self) were predictors of high pain-related distress (both p < 0.05).Significance of resultsAmong patients with advanced illness who reported pain at the start of care by a specialist palliative care program, high pain-related distress was common, particularly among those with cancer or poor physical function. Further studies are needed to explore the extent to which pain-related distress should inform the assessment and management of pain.