Abstract
Background
Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life.
Aims
Highlighting collaboration between pediatric and PC services is essential in providing seamless care.
Methods
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.
Results
Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1 day to 17 years with a mean of approximately 6 years. Thirty-five percent of patients were less than 1 year 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.
Conclusions
Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.
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All authors contributed to the study conception and design. Data collection and analysis were performed Jenny Hayden, Mary Ann Larkin, and Hilary Noonan (CNCCLLC). The first draft of the manuscript was written by Jenny Hayden and Mary Ann Larkin and all authors commented on previous versions of the manuscript. Dr Conroy, Dr Twomey, Dr O’Reilly, and Dr Gallagher revised the paper prior to submission. All authors read and approved the final manuscript.
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Hayden, J., Larkin, M.A., Noonan, H. et al. Palliative care services for children with life-limiting conditions. Ir J Med Sci 192, 1285–1290 (2023). https://doi.org/10.1007/s11845-022-03134-3
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DOI: https://doi.org/10.1007/s11845-022-03134-3