HCP-23PROSPECTIVE ASSESSMENT OF CAREGIVER PERCEPTIONS OF END-OF-LIFE CARE IN PATIENTS WITH HIGH GRADE GLIOMA

Abstract

BACKGROUND: Little is known about the quality of life experienced by patients and caregivers in the end-of-life (EoL) stage of patients with high grade glioma (HGG). The goal of this study is to understand caregiver perceptions of EoL care ofHGGpatients in the final 30 days. METHODS: Aprospective observational study for patients with HGG and their caregivers was performed. Caregivers were called every 2 weeks during EoL phase and one month after death to participate in the Toolkit After-Death Bereaved Family Member Interview, part of the Toolkit of Instruments to Measure End-of-Life Care(TIME survey). RESULTS: 25 out of30 caregivers completed the TIME interview. All patients were followed by hospice at time of death. Twenty-one patients (84%) died at home, 2 (8%) at an inpatient hospice and 2(8%) at a care facility. Thirteen patients (52%) had a durable power of attorney but only 2(8%) had a living will. Twenty-one patients(84%) lost consciousness prior to death at a median of 4 days (range 1-7). Overall care from hospice was well perceived well and measured with 5 questions, using a Likert scale (0-10, 10 the best): communication (8.6±1.44), respected wishes (9.4±1.12), symptoms controlled (8.8±1.63), died with dignity (9.6±1.08), providing emotional support (8.2±1.61), best care possible (8.7±1.22). Based on Time survey domain scores, caregivers felt that “care coordination” and “informing and decision making” were handled well while “advanced care planning”, “focus on individual” and “attention to family” could be slightly improved. CONCLUSIONS: Caregivers were overall satisfied with the EoL care received by patients. Only about half of all patients had a power of attorney in place and 8% had documented their EoL wishes. Earlier palliative care interventions might help to better direct end of life wishes and to improve attention to caregiver needs.