Perceptions of Life and Death in Paediatric Palliative Care: Family Communication about the End of Life

Abstract

Introduction: Talking about death is not a simple task, especially when children are involved. Qualitative studies of patients and families involved in Paediatric Palliative Care (PPC) explore themes relating to perceptions of death, communication around it, and support during the process. A quantitative study seeks to compare caregivers' assumptions of what their children believe about death as a biological concept to what the children report believing. We aim to increase caregivers' knowledge about communicating with children at and about the end of life. Methods: (1.) A quantitative study (n=141) compared healthy children's death understanding interview answers to those predicted by their caregivers. (2.) Nineteen caregivers of PPC patients were interviewed regarding communicating prognosis with their children. (3.) Sixteen PPC patients and siblings recorded daily thoughts in diaries for one to four weeks. (4.) Eighteen siblings of PPC patients were interviewed about their roles during their siblings' lives and the support they received during the process. All qualitative data were analysed thematically to gain families' perspectives about communicating in relation to PPC. Results: (1.) Primary caregivers slightly underestimated the level of knowledge of death as a biological concept demonstrated by their healthy children in four of the six subcomponents of death: causation, cessation, irreversibility and personal mortality. (2.) Caregivers' reasons for communicating with their children about death or avoiding the topic were loosely related to attempts to prepare or protect their children, respectively. (3. & 4.) Young people expressed ideas related to the special treatment of patients, spending time with family, judgment or discrimination, understanding, mortality, concerns about the impending death and desire to be involved in their siblings' lives and care. Conclusions: The quality of families' lives concern everyone involved in caring for PPC patients. Primary caregivers and siblings often desire to be involved in communication about and interaction with patients, but not in every situation. Helping was of special interest to participants. In order to fit young people's cognitive and active coping styles, caregivers may involve them in the care of their siblings and/or communication about prognosis. Communicating with children about death may be different than caregivers expect. When deciding whether or not to talk about their child's impending death, caregivers may take an individualized approach influenced by their informed perceptions.