"I want to be taking my own last breath": patients' reflections on illness when presenting to the emergency department at the end of life.

Objective: To understand perceptions regarding their illness of patients who present to the Emergency Department at the end of life.

Methods: Semistructured one-on-one interviews were performed with a convenience sample of seriously ill, Emergency Department (ED) patients with advanced illness presenting to an urban, public hospital. A bilingual Latina health promoter used a predetermined discussion guide to conduct all interviews. Non-English- or Non-Spanish-speaking patients and those with uncontrolled symptoms or cognitive deficits were excluded. All interviews were recorded and transcribed, and grounded theory methodology was used to analyze the results.

Results: Thirteen patients with advanced illness participated, 8 of whom were Spanish-speaking only. Because of difficulty accessing care and financial concerns, patients with advanced illness present to EDs when their pain or other symptoms are out of control. The majority derive great comfort and strength from their faith in God, who they believe determines their fate. Most listed spending time with family, and not being a burden, as most important at the end of life, and many expressed a preference to die at home surrounded by loved ones. Almost none had spoken to physicians about their care preferences.

Conclusions: Patients with advanced illness present to the ED of a safety net hospital when symptoms are out of control. They have many financial concerns, want to spend their remaining days with family, and do not want to be a burden. Most derive immense comfort from faith in God, but do not feel they have control over their own fate.