The present study demonstrated that psychological symptoms (e.g. anxiety) are frequent symptoms in the end-of-life care period and cause severe suffering in the children. Questions in terms of benefits and costs of cancer-directed therapy in the end-of-life care period need to be addressed in future prospective studies. Parents' perspective on their child's death and related end-of-life decisions highlighted the importance of communication between parents and the health care team. Future studies need to investigate potential barriers in the communication between parents and the team to optimise end-of-life decisions and hence, reduce parents' long-term distress. In line with the previous, the present data demonstrated that there is still a lack of routine contact from the health care team following the child's death despite existing guidelines. Research is therefore needed into the implementation of guidelines for routine contact into clinical practice following a child's death.

The DSF-KJ provides a standardized assessment and comprehensive description of paediatric chronic pain problems and facilitates medical and psychological diagnostic and therapeutic decisions. The preliminary results suggest that the questionnaire is a clinically useful and practical assessment tool for children and adolescents with chronic pain.

Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73) German pediatric oncology units (response rate 97%) provided information on the timing of breaking bad news, place of death, orchestrating palliative care at home and on the ward, integration of services and staff, funding of palliative care, bereavement services for siblings and parents, educational needs, level of self-satisfaction, and designated integrated palliative care services for children with cancer. More than 60% of children with malignancies died as inpatients in 2000, fewer than 40% at home. Twenty-nine pediatric cancer departments were able to provide comprehensive medical palliative home care, and nine units incorporate a designated palliative care team or person. Only half of the departments provide bereavement services for siblings. Many health professionals working on pediatric cancer units in Germany provide palliative home care in their free time without any payment. They predominantly use their private vehicles and often are unclear about the legal background and insurance arrangements covering their provision of care. The data suggest an important need for education about palliative and end-of-life care. The majority of children dying from cancer in Germany do not have access to comprehensive palliative care services at home. Our study highlights the necessity of incorporating the palliative paradigm into the care of children with cancer. Barriers to its implementation must be identified and overcome.