While it will therefore continue to need refinement, the Directory is a key tool for rational service development in children’s palliative care. Competing interests The authors declare that they have no competing interests. Authors’ contributions RH conceived of the study, supervised the data collection and wrote the manuscript. MD carried out the data collection. RH, RHastings, MD and JN all developed the Directory itself, making amendments in various iterations. All authors
participated in development of the final manuscript and have seen and approved the submitted draft. Pre-publication history The pre-publication history for this paper can be accessed here: http://www.biomedcentral.com/1472-684X/12/43/prepub #CYT387 keyword# Acknowledgement The authors would like to thank Ms. Sonjia Ezergailis, Research Inhibitors,research,lifescience,medical Nurse at Children’s Hospice UK (now Together for Short Lives) who gathered diagnostic data from the children’s hospices, and all the data managers who participated. This project was part funded by Welsh Office of Research and Development (WORD), grant number ReF06/2/237.
In England and Wales, the annual death rate is around 1% [1]. In high income countries,
most people die in old age; in England between 2008 and 2010, 66.7% of Inhibitors,research,lifescience,medical people who died were over the age of 75 and 36.2% were over the age 85 [2]. Three main end of life decline trajectories Inhibitors,research,lifescience,medical have been identified [3]; short period of decline typical of cancer (21%); long-term limitations with intermittent serious episodes typical of organ failure (21%); and prolonged dwindling typical of frail elderly people and people with dementia (20%). Additionally, 15% of
people die suddenly and 24% die following other, varied trajectories. While dying is not always associated with pain or suffering, people who are dying Inhibitors,research,lifescience,medical can suffer isolation, grief, anxiety and depression [4]. Carers of people who are dying, or those who are bereaved, may suffer from illnesses including depression [5] or complicated grief [6] and may feel isolated as people around them fail to offer support. A recent systematic literature review revealed that people throughout the world share core ideals of a ‘good death’ [7], which include being free of pain and other symptoms, being with friends and family, not being no a burden, being listened to, being able to decide about medical treatments [8] and being treated with respect. In some studies ‘having one’s affairs in order’ was highlighted as important, while religion or spirituality was important to some people [9-11]. Many people would like to be cared for at home during their final illness [12-14]. ‘Having one’s affairs in order’ necessarily requires preparation which might also assist people to have other end of life care wishes met.