Table 2.

Themes Emerging from Semi-Structured Interviews with Patients and Caregivers (n=21)

Theme	Brief Explanation	Proportion of Participants Endorsing Theme n (%)
1. Unprepared for managing symptoms at home	Patients and caregivers attempted to manage symptoms at home, but were unprepared for managing the severity of symptoms experienced.	16 (76)
2. Uncertainty and anxiety	Patients and caregivers wanted more information about the reasons for long wait times, the triage process in the waiting room, and the next steps in the workup and treatment of their symptoms. Lack of this information led participants to uncertainty and feelings of anxiety.	9 (43)
3. Communication is essential	Although some participants described profoundly positive interactions with providers, others described feeling like they were being treated like a number. Many participants felt that they should have a higher priority because of their frequent visits to the hospital, the complexity of their illness, and their short life expectancy. Many Participants were frustrated about being asked the same questions multiple times by ED providers.	Successes – 7 (33%) Challenges – 14 (67)
4. Mixed experiences with symptom management	Some patients were very satisfied with pain and symptom management. Others described instances of significant pain that either went unnoticed, untreated, or were treated ineffectively.	Effective treatment – 6 (29) Inadequate treatment – 14 (67)
5. Conflicting perspectives about palliative care clinicians in the ED	Patients who were established palliative or hospice patients prior to the ED visit would have welcomed the involvement of palliative care clinicians in the ED. Participants who equated palliative care with end-of-life care expressed serious concerns.	In favor – 14 (67) Opposed – 7 (33)