If recent medical advances have positively impacted children’s lives, access to this new knowledge and technology raises ethical questions. Medical progress has also contributed to prolonging suffering in those afflicted with life-limiting conditions. Despite the growing tension between the need to discuss end-of-life issues, particularly advanced directives, and the widespread discomfort in engaging in such discussions, the question of death remains frequently evaded. The transition from curative to palliative goals is fraught with misunderstandings and moral distress. This transition of care is complex, and there is limited knowledge about the best approach to proceed. However, when not done effectively, the process carries risks of trauma for patients, families, and healthcare providers. In this article, common pitfalls during the care transition from curative to palliative goals are identified and deconstructed in light of the most recent evidence-based references in the field, along with the input of pediatric palliative care experts, to guide healthcare providers in addressing these challenges. Effective communication models exist and should be taught and utilized. Understanding how children perceive illness and death can guide the delicate task of including them in care planning. Shifting the goals of care from curative to palliative is not giving up on hope. It is about establishing a shared-decision approach to goal-concordant care that considers the non-curative nature of the illness and ensures that children receive compassionate and personalized care. Lastly, healthcare providers must engage in self-monitoring to remain present while delivering care in such a unique and emotionally challenging context.
Sadler et al. (Fri,) studied this question.