Preference for home death expressed by families in our study is similar to others, but the proportion of children actually able to die there is higher. Home death is facilitated by this model. Key components are POONSs, pediatric palliative and/or oncology specialist, and general practitioner. Professional roles change during PC and after death. An ongoing role for the oncology team in bereavement support is highlighted.

The best therapeutic approach for these patients also remains unclear. In patients with secondary HS, different treatment modalities are used including intravenous immunoglobulins [9], etoposide, and corticosteroids [10], and various immunosuppressive agents [11], whereas patients with primary HS or severe forms of secondary HS can only be cured by allogeneic bone marrow transplantation (BMT) [12]. Recently, successful correction of HS with unrelated BMT [13], unrelated umbilical cord blood transplantation [14], and allogeneic peripheral blood stem cell transplantation [15] has also been reported. In our patient, different treatment approaches including etoposide, corticosteroids, cyclosporine A, and daclizumab, a monoclonal antibody against the IL-2 receptor [4], were initiated without success. Aggressive chemotherapy for treatment of the germ cell tumor could not be initiated because of severe pancytopenia and bleeding coagulopathy. The patient deteriorated rapidly within weeks and died before a suitable stem cell donor could be found, the rationale being such an emergency transplant might eradicate the HS together with the malignant germ cell tumor.In conclusion, HS associated with malignant germ cell tumor is a rare and evidently fatal constellation. No effective treatment is known. Allogeneic stem cell transplantation might therefore be considered as immediate initial treatment. Unlike adults, most children who die of progressive cancer do so at home. Many have either leukemia or have solid tumours with bone marrow infiltration with malignant cells and are at risk of bleeding due to thrombocytopenia. They are also likely to be at increased risk of reactions to platelet transfusion and platelet refractoriness due to previous multiple transfusions.Bleeding, particularly when the blood loss is visible is a particularly distressing symptom for both the patient and the family. Minor bleeding can often be controlled by systemic pharmacologic measures (e.g., tranexamic acid) and simple local measures (e.g., pressure). When major hemorrhage occurs as a terminal event, arresting bleeding may not be possible and symptomatic measures of sedation and analgesia are thought to provide the best palliation. However, in the absence of major life-threatening hemorrhage, where simple local and pharmacologic measures have failed, platelet transfusion is the most Over the last 5 years, the Regional Pediatric Oncology Unit at Alder Hey Children's Hospital, Liverpool, UK, has adopted a policy of home platelet transfusion during the terminal stages of pediatric cancer. Here, we present the results of a retrospective audit of these transfusions.The case-notes of all children who had died of cancer during the period, January 1996-December 2000, were scrutinised to identify those who had received home platelet transfusions. The patient's hospital case-notes, the Pediatric Oncology Outreach Nurse Specialist (POON) nursing notes and blood bank records were studied in order to identify indications, adverse reactions, and efficacy of pla...

Palliative care for children and young people can now span a period ranging from hours and days to months and years, with many young people with life-limiting illness making the transition to adult services. Greatly improved supportive care and advances in medical technology have underpinned this, but have also given rise to additional and increasing challenges to providing effective support in all care settings for children with often complex health and technology needs. The primary objective of palliative care is to support the child and family, to allow them to maintain resilience and to cope from the time of diagnosis, through periods of stability and times of crisis, through to the end of life and bereavement. Parents or carers will need support and empowerment with all aspects of palliative care, including symptom management, complex nursing skills, practical support, and psychosocial and spiritual care, at different times and to different extents, in order to achieve the best quality of life for their child. This support must also be extended to the wider family and the siblings in particular, who often receive less attention because the needs of the ill child are so great. The care provided should be tailored to the needs and wishes of the child and their family, and also reflect their individual cultural needs, but inevitably must be delivered within the constraints of the available healthcare staff, facilities, and resources. Ideally, care will be delivered with minimal disruption to normal everyday life (i.e. at home or in school). However, at times care in a hospital, hospice, or other facility will be necessary. To ensure effective care across all care settings, it is essential that the provision of all care and support is coordinated and flexible enough to meet the range of needs, with an emphasis on prompt and effective inter-professional communication and teamwork. This chapter is based upon the models of care in thee UK and the USA, but the principles will be widely applicable in the context of different healthcare systems. We consider the key dimensions for care in all care settings, as well as how needs are determined, including the wishes of the child and their family and assessment by members of the multidisciplinary team. We then explore how these needs are best met by examining models of care in the different care settings, and consider how we can ensure equity in choice and care provision across care settings.