ABSTRACT
As a result of a desire amongst the hospital staff to improve the management of dying children and their families, a four person subcommittee was appointed to investigate this area of care. Nineteen persons were interviewed (15 hospital staff members and four parents) and 12 written submissions were received (10 from staff and two from parents) over a 10 week period. An analysis of one year's deaths of Adelaide Children's Hospital patients showed that most took place in the hospital and about one in five were at home. Nearly 60% occurred in children aged 0-5 years, 15% in those aged 6-10 years, 15% in those aged 11-15 years, and 13% in children aged more than 15 years. The four commonest causes of death were: cancer (27%), congenital abnormalities (19%), sudden infant death syndrome (SIDS) (16%), and trauma (11%). Sudden unexpected deaths are most common, particularly for infants. Recommendations included improved privacy for families and friends; more sensitive body viewing, mortuary, autopsy and funeral arrangements; and better in-service education for staff and information giving for families. Areas of insufficient staff support were identified and the appointment of a specialist palliative care clinical nurse consultant was proposed. Stronger links with palliative and hospice care teams, general practitioners and community nurses were suggested. Addressing the issues of living and dying, and working through the stages of grief are integral parts of long term clinical care. The need for good continuity of psychosocial support was a recurring theme. More awareness of the availability of the specialised pain relief service was required. Ethical issues should be addressed as part of the general development of education and information services. The advantages and limitations of the enquiry are discussed and the model is proposed as a potentially useful one for both paediatric and adult palliative care and hospice care service development.
