The caregiver’s perspective on end-of-life inpatient palliative care: a qualitative study

Abstract

Introduction Understanding patient and caregiver experience is key to providing person-centered care. The palliative care approach includes holistic assessment and whole-person care at the end of life, that also involves the patient’s family and loved ones. The aim of this study was to describe the way that family caregivers experienced patients’ deaths during their loved ones’ last hospital admission, comparing inpatient palliative care (PCU) and non-palliative care (Non-PCU) units. Methods A qualitative case study approach was implemented. Family caregivers of terminally ill patients admitted to the Infanta Elena Hospital (Madrid, Spain) between 2016 and 2018 were included using purposeful sampling. Eligible caregivers were first-degree relatives or spouses present during the patient’s last hospital admission. Data were collected via in-depth interviews and researchers’ field notes. Semi-structured interviews with a question guide were used. A thematic inductive analysis was performed. The group of caregivers of patients admitted to the PCU unit and the group of caregivers of patients admitted to Non-PCU were analyzed separately, through a matrix. Results In total 24 caregivers (12 from the PCU and 12 from Non-PCU units) were included. Two main themes were identified: caregivers’ perception of scientific and technical appropriateness of care, and perception of person-centred care. Scientific appropriateness of care was subdivided into two categories: diagnostic tests and treatment, and symptom control. Perception of person-centred care was subdivided as: communication, emotional support, and facilitating the farewell process. Caregivers of patients admitted to a PCU unit described their experience of end-of-life care as positive, while their Non-PCU unit counterparts described largely negative experiences. Conclusions PCU provides a person-centered approach to care at the end of life, optimizing treatment for patients with advanced disease, ensuring effective communication, establishing a satisfactory professional relationship with both patients and their loved ones, and facilitating the farewell process for family caregivers.