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In April 2009, the Association for Children’s Palliative Care (ACT) endorsed the Wishes Document as a template for end-of-life discussions in children with life-limiting conditions (Child & Family Wishes Document). A life-limiting condition has been defined as “One for which there is currently no cure available and the likelihood is that the condition will lead to the child dying prematurely”.1 This describes many of the children that are familiar to paediatricians – those with severe cerebral palsy, neurodegenerative conditions, severe congenital heart disease, and metabolic and chromosomal disorders, to name but a few. Advancesin medical care, along with increasingsocietal expectations, have resulted inchildren with these conditions livingmuch longer. This review discusses the importance of sensitive end-of-life planning for such patients and describes the history and format of the Child & Family Wishes Document.
Setting the context
In the past, much of the clinical experience and published research in children’s palliative care has been derived from practice in children’s cancer. Although terminal care at home for children with cancer has long been advocated,2 3 this debate has only recently begun for children with other life-limiting conditions.
Currently, most children with non-malignant life-limiting conditions die in hospital. In May 2008, the Confidential Enquiry into Child and Maternal Health (CEMACH) published its study “Why Children Die”. The researchers investigated 1000 children, aged 1–19 years, who died during 2006 in three regions of England, all of Wales and Northern Ireland. They found that 77% of children who died had a pre-existing disability or medical condition. Among this group, 73% died in hospital, 19% at home and only 2.6% in hospices. Of the 126 cases that were reviewed in detail, 48% had a congenital condition or longterm illness that would have been associated with a shortened life expectancy, and only two of these 126 children died …
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