Embracing family presence: exploring the reasons for family decisionmaking dependence on in-hospital palliative care for cancer patients

Abstract

The implementation of home-based palliative care is widely recognized as a commendable and effective model of care provision. However, it is noteworthy that families residing in Indonesia exhibit a propensity to predominantly seek palliative care services within hospital environments for their family members afflicted with palliative-stage cancer. Therefore, the aim of this research was to investigate the perceptions of family members in their decision-making process regarding the care of palliative-stage cancer patients at home. This qualitative study employed a descriptive phenomenological approach. Data were obtained through in-depth interviews with ten Indonesian family members of palliative-stage cancer patients refusing discharge, and were analyzed using the Colaizzi method. Furthermore, the inclusion criteria were that the dominant family member who cares for the patient lives with the patient and is involved in the decision-making process. Two themes emerged from this study: i) a lack of support in decision-making, and ii) pain and chronic sorrow. Home-based palliative care for cancer patients presents significant decision-making challenges and persistent grief for families, necessitating robust support and education from healthcare professionals such as nurses and policymakers. Additionally, a national health insurance system that enables effective palliative care is crucial.