Emergency department experiences of acutely symptomatic patients with terminal illness and their family caregivers

Abstract

Context: Despite increased focus on improving palliative care in the emergency department (ED), there is little research on how to best address the specific needs of this patient population.

Objectives: To better understand the experiences of acutely symptomatic patients seen in the ED.

Methods: Using in-person semi-structured interviews, we explored the attitudes, experiences, and beliefs of 14 patients and seven family caregivers on the inpatient palliative care consult service, who had been admitted through the ED at two academic medical centers. We used a grounded theory approach to code responses. Transcripts were coded by a palliative medicine physician, an emergency medicine physician, and a general internist. Discrepancies were resolved by consensus. Coded sections were iteratively reviewed for interpretation, and concepts were collapsed into themes.

Results: Five distinct themes emerged: 1) unprepared for managing symptoms at home; 2) uncertainty and anxiety; 3) communication is essential; 4) mixed experiences with symptom management; and 5) conflicting perspectives about the purpose of palliative care clinicians in the ED.

Conclusion: Patients and caregivers identified systems, communication, and clinical issues in ED care that should be a focus for future research.