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.

Location of end‐of‐life care of children with cancer: A systematic review of parent experiences

“…20 Qualitative data were collected through a single open-ended question included in the questionnaire asking, "If you didn't feel prepared for the kind of medical and emotional problems the child experienced at endof-life phase, what would have been helpful?" 20 A variety of qualitative methods were used to analyze data, including grounded theory analysis, 26,28,29,31 thematic analysis, 19,20,24,25,30 content analysis, 17,18,21 phenomenology, 22,33 and use of a conceptual analytical framework. 23 Management of data was consistent across studies, with all reporting audio recording of interviews and transcription of interviews verbatim.…”

“…One study included data on adolescents and young adults aged 15-25 years, as over half represented adolescents were aged 15-18 years, the relevant data from this study was included. 30 Three studies 23,29,31 included parents of children with malignant and nonmalignant conditions and only qualitative data from children who died from cancer were extracted and synthesized.…”

“…Everything about it was safe, 'cos we knew the nurses, Matthew knew the nurses, the nurses knew us. 31 We had to protect his brothers and sisters. 30…”

Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers

“…These complications often need highly specialized cure-focused care, including PICU, [6,8] suggesting less predictable pathways. Qualitative research involving bereaved parents identified several factors that affect parents when deciding on the place of EOL care, among others, awareness of the child's dying and timing of the decision-making [9]. Since the EOL care-pathway is difficult to predict, especially in the case of HSCT-related complications, the timing and opportunity of EOL decision-making may come too late or may easily be missed.…”

“…Of these studies, three showed that pediatric HSCT patients often died from treatment-related complications (60, 68, and 81%) compared to disease-related (40, 32, and 19%) [4,6,8]. The place of death of a child with an incurable illness depends on several factors [9] and varies in several studies [10,11]. In the USA between 1989-2003, the place of death for children whose deaths were attributed to complex chronic conditions increasingly shifted from predominantly hospital to home setting [10].…”