Addressing 10 Myths About Pediatric Palliative Care.

With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions. Unfortunately, despite the well-identified need for PPC services across pediatric specialties, multiple misconceptions persist. Common myths about palliative care are identified and deconstructed in light of the most recent evidenced-based references in the field to provide guidance to healthcare providers to address these. PPC is often associated with end-of-life care, loss of hope, and cancer. Some healthcare providers and parents also believe that information like diagnosis should be withheld from children for their emotional protection. These examples of misconceptions hinder the integration of pediatric palliative care and its additional layer of support and clinical expertise. PPC providers have advanced communication skills, are able to instill hope in the face of uncertainty, are trained to initiate and implement individualized pain and symptom management plans, and understand how to improve the quality of life in children with serious illnesses. Improved awareness about the scope of PPC is needed to ensure that children benefit from the maximum expertise and support throughout their complex health trajectories.

Implementing a nurse-led paediatric palliative care service.

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.