Choice of Place of the Death of Children with Cancer during End-of-Life Care - Parent's Perspectives in a Developing Country.

Abstract

The place of a child's death is an indicator of the quality of paediatric palliative and end-of-life care. This study aimed to identify the choices of parents about the place of death of their children with cancer and to evaluate whether they had any regrets about their choices retrospectively. All children who were treated in our centre for the past 9 years with palliative intent treatment to improve their quality of life were included in this study. For the children whose place of death was the hospital, data were collected from the case records. For the children who passed away at home, a telephone call was made to the families, informing them of the study, allowing time for there to be any clarifications. A verbal consent was requested for the study. Data were collected through the telephone conversation. Out of the 59 children who died during the study period from 2012 to 2021, 31 children (52.5%) died in hospital settings. Eighteen (58.1%) families who had opted hospital as the place of death had regretted their choices. Families who chose home as a place of death were upset about inadequate pain management. The majority of the families had desired home care services for adequate symptom control and to keep the child comfortable in a familiar environment. Most children with life-limiting conditions continue to die in the hospital setting in developing countries due to a lack of dedicated palliative care services and home care. Most of the families retrospectively, regretted their choices of place of death. Most of the families, however, would prefer home as the place of death, if there was better end-of-life care support for symptom control at home. Specific policies institutional and nationwide need to be formulated to provide guidance to the professionals on the discussion of goals of care and place of care, with a supporting network to ensure its provision.