Parenting and palliative care in paediatric oncology

Abstract

Although many children with cancer can be cured, approximately 25 % will die of their disease. These deaths are usually anticipated and preceded by a period of palliative care focused on the end-of-life, usually referred to as the palliative phase. The PRESENCE-study was aimed at a better understanding of parenting, parental care-giving and decision-making and of the professional caregivers’ role during this phase. It was preceded by a preliminary qualitative study on parenting a child with a life-threatening illness. For both studies interpretative qualitative methods were used. For the PRESENCE study 57 interviews were conducted with 44 parents and 43 interviews with 38 professionals of 23 children with incurable cancer. For the preliminary study, 23 parents of 12 children treated for leukaemia were interviewed. The essence of parenting a child with a life-threatening illness is captured by ‘being there’ for their child. ‘Being there’ was identified as a parental response to the child’s vulnerability and a parental need to meet the child’s needs. By ‘being there’ parents protected their child from the negative aspects of illness and treatment, and preserved their child by helping him/her to cope with tasks related to the illness and treatment. In the palliative phase ‘being there’ could be characterized as the embodiment of not leaving the child alone in his suffering, thereby providing a meaningful answer to the child’s decline and the dying phase. The degree to which parents were able to face the impending loss of their child was the factor that most influenced their care-giving and decision-making. The parents’ difficulty in coping with feelings of loss resulted however in ambiguity, for knowing death is inevitable did not preclude the avoidance of loss. This took the form of an internal struggle between adopting an attitude of ‘letting go’ and of ‘preservation’. Although for most parents the balance shifted over the course of the illness towards ‘letting go’, this often occurred late, sometimes not until the dying stage. A timely completion of the transition appeared to be important for the child’s well-being and for a positive evaluation of their parenthood once the child had died. We identified the main factors that influenced the parents’ transition towards ‘letting go’. In addition to factors that supported preservation or could support parents in both directions, we found that certainty about death being inevitable, being able to postpone grief, the ability to disentangle their own needs from their child’s needs and the ability to parent meaningfully, promoted ‘letting go’. Parents also felt supported when professionals validated the transition. Professionals often adopted a ‘reactive’ attitude, thus shifting responsibility towards the parents. By ‘reactive’ we mean that they took action only in response to initiatives of the parents in reporting signals or problems. According to many parents taking responsibility for adequate symptom treatment felt like contributing to their child’s death. Parents showed some reluctance to initiate treatments that had consequences they perceived as losses. Consequently, symptoms were often not adequately treated.