Home or hospital as the place of end-of-life care and death: A grounded theory study of parents’ decision-making

Abstract

Background: While several studies have examined ‘what’ families want with regard to the place of a child’s end-of-life care and death, few have explored ‘how’ parents reach a decision. Aims: (1) to develop a model explaining how parents of a child with a life-threatening illness in Greece decide about the place of end-of-life care and death; (2) to identify the factors affecting decision-making; (3) to consider the implications for clinical practice. Design: Grounded theory study of bereaved parents using semi-structured open-ended interviews following Strauss and Corbin’s principles of data collection and analysis. Setting/participants: Semi-structured interviews with 36 bereaved parents of 22 children who died at home (n = 9) or in a paediatric hospital (n = 13) in Athens, Greece. Results: (1) Decisions regarding place of care and death were reached in one of four ways: consensus, accommodation, imposition of professional decisions on parents or imposition of parents’ decisions without including professionals. (2) Six factors were identified as affecting decisions: awareness of dying, perceived parental caregiving competence, perceived professional competence, parents’ view of symptom management, timing of decision-making, and being a ‘good parent’. (3) Decisions were clear-cut or shifting. Few parents did not engage in decisions. Conclusion: Parents’ decisions about place of end-of-life care and death are affected by personal, interpersonal, timing and disease-related factors. Parents are best supported in decision-making when information is presented clearly and honestly with recognition of what acting as ‘good parents’ means to them, and opportunities to enhance their caregiving competence to care for their child at home, if they choose so.