Place of care

Jan Vickers and Jody Chrastek

in Oxford Textbook of Palliative Care for Children

Second edition

Published on behalf of Oxford University Press

Published in print May 2012 | ISBN: 9780199595105
Published online July 2012 | e-ISBN: 9780199665020 | DOI:

Series: Oxford Textbooks In Palliative Medicine

Place of care

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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.

Chapter.  11779 words. 

Subjects: Paediatrics ; Palliative Medicine

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