Palliative care services for children with life-limiting conditions.

Abstract

Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Highlighting collaboration between pediatric and PC services is essential in providing seamless care. Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period. Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1day to 17years with a mean of approximately 6years. Thirty-five percent of patients were less than 1year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services. Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.