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Open Access 01-12-2024 | Research

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

Authors: Jose Amado-Tineo, Teodoro Oscanoa-Espinoza, Rudi Loli-Ponce, Marvin Omar Delgado-Guay

Published in: BMC Palliative Care | Issue 1/2024

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.

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Title: Experiences of caregivers of patients with noncancer diseases readmitted to an emergency department at the end of life
Authors: Jose Amado-Tineo
Teodoro Oscanoa-Espinoza
Rudi Loli-Ponce
Marvin Omar Delgado-Guay
Publication date: 01-12-2024
Publisher: BioMed Central
Published in: BMC Palliative Care / Issue 1/2024
Electronic ISSN: 1472-684X
DOI: https://doi.org/10.1186/s12904-024-01596-z

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

Abstract

Background

Methods

Results

Conclusion

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Please log in to get access to this content

“Tie your camel first, then rely on God”: reconceptualizing Javanese Islamic values to support palliative care at home

Palliative care training in medical undergraduate education: a survey among the faculty

Spiritual needs of family caregivers in palliative care

Correction: Exploring the adaptive leisure activities of classified nursing model in elderly colon cancer patients: a perspective on interactive care

The influence of care home registration type and size on senior care leader’s confidence to provide palliative and end-of-life care: an explanatory sequential mixed methods study

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