Care coordination and emergency department (ED) use at the end of life for patients with cancer: Findings from structured interviews with primary caregivers.

Abstract

161 Background: For cancer patients who want to die at home, care coordination helps ensure that patients’ symptoms are managed at home, avoiding an ED visit and subsequent hospitalization. We conducted a qualitative study with patients’ primary caregivers, assessing the relationship between care coordination and ED visits in the last month of life. Methods: From October-December 2017, we audio-recorded semi-structured phone interviews with 35 adults who were primary caregivers for a patient who died with cancer between July-December 2016. Two analysts independently coded transcripts using qualitative content analysis and summarized results as major themes. Results: Most respondents were white (91%), female (63%) and spouses (89%). Twenty-four patients (69%) enrolled in hospice; of those, 15 (63%) received services for < 14 days, often enrolling after an unanticipated hospitalization or developing higher symptom burden. We identified three major themes related to care coordination and unanticipated ED visits/hospitalizations. First, caregivers reported insufficient at-home medical support especially following changes in patient status due to falls, pain, infection, or diarrhea/dehydration: “We have to go back to the hospital. You are getting worse and you are getting so weak, you are going to fall. And he said: ‘Okay, let's go.’ And he never came back home.” Second, lack of knowledge regarding whom to contact with needs: “We could eventually get people, but…there tended to be some significant delay… there weren’t facilities open... the emergency room…always seemed like a questionable best choice… the time and stress involved to the patient seemed like a big negative.” Third, caregiver burden: “We have got to go back to the hospital. I can't do this. I can't do this.” Conclusions: Caregivers reported significant gaps in care coordination and caregiving burdens that prompted ED visits and subsequent hospitalization. Active facilitation of hospice enrollment by oncologists and improved access to hospice resources are key targets to help patients avoid adverse events such as ED visits/hospitalizations while providing adequate support to caregivers.