Implementing a nurse-led paediatric palliative care service

Abstract

Background: Children with life-limiting illnesses are living longer. They have complex care needs and require specialised knowledge and skills, yet paediatric palliative care is still at its infancy in most settings worldwide. Aims: To describe the process of implementing a nurse-led paediatric palliative care programme in a large tertiary hospital in Saudi Arabia. Methods: The steps that led to the implementation of this new nurse-led programme will be described through a 1-year analysis of collected data. Findings: A total of 107 children received services from the paediatric palliative care programme for over one year, with cancer being the predominant diagnosis (n=71, 66.3%). More than half of the children had a do not attempt resuscitation (DNAR) order (n=54, 50.5%). The most frequently encountered issues were the family's difficulty in coping with the disease (n=80, 74.7%) and a child's uncontrolled pain (n=72, 67.3%). The most frequent interventions were family support and counselling (n=71, 66.3%), family education about symptom management (n=69, 64,5%) and adjusted analgesics (n=60, 56%). Children in the terminal stage of their disease had significantly more issues. Conclusion: Effective paediatric palliative care can be successfully implemented in a healthcare setting even when resources are limited. A nurse-led service was found to be a viable option for the delivery of palliative care to children with serious illnesses.