Experiences of caregivers of patients with noncancer diseases readmitted to an emergency department at the end of life

Abstract

Background When there is limited access to primary care or end-of-life services for patients with chronic diseases, caregivers often need to bring their loved ones to emergency departments (EDs) to solve or control distressing physical and psychosocial-spiritual problems. There is limited literature about the experiences of primary caregivers of patients with nononcologic chronic diseases who are at the end of life and are evaluated in EDs in Latin America. Methods We conducted in-depth interviews with primary caregivers of adult patients with advanced and terminal chronic nononcologic diseases who were evaluated in the ED of a hospital in Lima, Peru. This qualitative study employed a phenomenological approach. Themes, categories, codes, and quotes were analyzed using ATLAS.ti 9.1.4. Results Twelve primary caregivers, aged 38 to 76 years old, mostly female immediate family members (daughter or wife), participated. They described their experiences in the ED, including feelings of despair and anguish due to prolonged waiting times, insufficient resources, incomplete information regarding the patient’s problems, and “insensitive” treatment by the staff. Some also expressed gratitude for “saving patient’s lives.” They also experienced deficiencies in home care follow-up and patient transfers, which worsened during the COVID-19 pandemic; many times they felt that “they were ignored.” When caring for patients at home, caregivers felt sad, helpless, and frustrated as they observed patients’ progressive deterioration. As patients approached death, caregivers expressed that they tried to “give them all the love” and to have them present for as long as possible, although at the same time caregivers did not want patients to continue to suffer and hoped for “a better place” after this life. Caregivers found their faith to be a source of strength as they continued to care for and be with their loved one until the end. Conclusion Caregivers reported “traumatic” and “shocking” experiences during ED care, as well as conflict between wanting the patient’s suffering to end and wanting to prolong their lives. They also expressed feelings of gratitude, resignation, love, faith, and hope.