Abstract
BACKGROUND: Community-based palliative care and hospice is essential for meeting the preferences of terminally ill patients and reducing healthcare costs. However, systematic research on the decision-making factors concerning the patients and family caregivers remains limited. This study aimed to identify and categorise the factors related to the patients' and family caregivers' decision-making in the use of palliative care or hospice within the community. METHODS: This systematic review (PROSPERO: CRD42024612049) was conducted using the CINAHL, Cochrane Library, EMBASE, and Medline databases. Studies focusing on the patients' and family caregivers' decisions regarding palliative care and hospice were included, excluding the studies focusing solely on healthcare professionals. Four authors independently assessed the eligible studies and resolved discrepancies through discussion. The quality of the included studies was assessed using the Mixed Methods Appraisal Tool 2018. The data were qualitatively synthesised using a narrative approach and a constant comparison model. Decision-making factors were categorised based on Andersen's behavioural model of health services use taking into consideration predisposing, enabling, and need factors. RESULTS: Seven studies, four quantitative and three qualitative, were included. Sixteen factors, including five predisposing factors (age, education level, people in the household, experiences with institutional care, and death experience), four enabling factors (physician's disclosure, communication partner, communication context, and information about options), and seven need factors (acknowledgement of terminal status, knowledge, perception, end-of-life wishes, caregiver's commitment, preference for dying at home, and health condition), were identified. CONCLUSIONS: Patient and caregiver characteristics, personal experience, communication context, knowledge, preferences, and physical condition were the key factors related to the decision to use palliative care and hospice. This study highlights the importance of addressing these factors to support informed and patient-centred decision-making in end-of-life care.