• Elissa Kozlov, Veerawat Phongtankuel, Holly Prigerson, Ronald Adelman, Ariel Shalev, Sara Czaja, Ritchell Dignam, Rosemary Baughn, and M Carrington Reid.
• Weill Cornell Medicine, Division of Geriatric and Palliative Medicine, New York, New York, USA. Electronic address: elk2020@med.cornell.edu.
• J Pain Symptom Manage. 2019 Jul 1; 58 (1): 808580-85.

ContextRates of psychological symptoms for patients with serious illness are high, but there has been limited research investigating psychological symptoms at the very end of life (EOL).ObjectivesTo better understand the prevalence, severity, and correlates of psychological distress at the very EOL.MethodsThis retrospective cross-sectional study utilized caregiver proxy interviews. Caregivers were contacted after their care recipient recently died while receiving home hospice care and invited to participate in a brief interview with a trained research assistant. Patient, caregiver, and hospice utilization data were also abstracted from electronic medical records, and caregiver burden scores were assessed via interview.ResultsA total of 351 caregivers were included in the study. According to caregivers, 46.4% of patients had moderate-to-severe anxiety, as assessed with a score of ≥4 on the Edmonton Symptom Assessment Scale and 43% had moderate-to-severe symptoms (Edmonton Symptom Assessment Scale score ≥ 4) of depression in the last week of life. Symptoms of anxiety and depression were significantly associated with caregiver burden scores and inversely associated with patient age.ConclusionPsychological symptom management at the very EOL is essential to providing comprehensive hospice care. Our study revealed that nearly half of all home hospice patients experience moderate-to-severe symptoms of anxiety and/or depression in the last week of life. Future research is needed to improve psychological symptom management at the very EOL to improve the quality of life for both patients and their families.Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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