Experiences of parents and physicians with palliative care for pediatric cancer patients

Abstract

Approximately 25% of children diagnosed with cancer eventually die. In this thesis, the long-term experiences of parents and physicians with palliative care for pediatric cancer patients were explored using questionnaires. Experiences of parents Regarding aspects of care, parents highly valued communication, continuity of care, and parental involvement during the palliative phase. Both the interaction with health care professionals, especially communication and continuity of care, and symptom management in children dying of cancer, were associated with long-term parental grief levels. Besides the physical aspects of palliative care, spiritual care is important. In our thesis, faith was very important for only a minority of parents during the palliative phase, while the majority of parents remained hopeful. Parents’ faith, nor their hope for a cure, were related to long-term parental traumatic grief or symptoms of depression. In addition, we explored the rationale and consequences associated with a parent’s decision to discuss death with a child with incurable cancer. Most parents in our study cited several reasons for not having discussed death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents. To enhance evidence-based medical care for children and to test the value of novel anti-cancer therapies, enrolling children in a clinical trial is important. A minority of parents reported that participation in a clinical trial was burdensome for their child and none of the parents would decline participation if they would be in the same situation again. Besides the impact of a child’s death on parents, about half of the siblings had experienced a lot of problems in the period before and after the death of their brother/sister. Most parents mentioned that the siblings still experienced negative consequences of the child’s loss, even after many years, which stresses the need to support siblings. Experiences of physicians In two-thirds of the child’s death, one or more end-of-life decisions (ELDs, i.e. decisions concerning administering or forgoing treatment that may (un)intentionally hasted death) were made. Frequently mentioned considerations for making ELDs were according to the pediatric oncologist no prospects of improvement and unbearable suffering without a curative perspective. Pediatric oncologists were satisfied with care around the child’s death in 90% of the ELD cases versus nearly 60% of the non-ELD cases. A substantial number of children with advanced cancer die at home, often resulting in care being transferred to community health care professionals, in particular the general practitioner (GP). GPs reported feelings of sadness and/or powerlessness around the time of the child’s death. They rated their own distress level during the terminal phase as 6 [range 0-9.5, with a maximum score of 10]. However, the majority of GPs reported that they ultimately came to terms with the child’s death. Several implications for general practice related to providing palliative care for children with cancer are stressed in the current thesis. Continuity of care and facilitated collaboration between hospital and primary care, and between primary health care professionals, are essential. A consultation-based contact with a specialized palliative care team to support the GP can be helpful.