Caring for Dying Children in the Pediatric Intensive Care Unit, Nurses and Parent’s Perspective

Caring for dying children is complex and requires coordination of all resources. In PICU the main objective is to save lives and ensure vital functions in critically ill children. However due to the child’s critical and life-threatening condition, there is always the possibility the child will not survive. The acuity and technical nature of the intensive care context can provide an obstacle in the transition to palliative care and furthermore conflict with the affected families’ needs. The study aim was to enlightening caring as it is represented in caring situations of dying children at PICU.

An Interpretative Phenomenological design was applied. The data collection was performed at three PICU in Sweden in two different occasions at 2011 and 2016 [1,2]. Caring situations of a total of 18 children were observed, of these five cases were estimated as end of life care or lifethreatening conditions. Additionally, nurses and parents were interviewed in direct connection to the observation. Results showed that for nurses, it was a challenge to change perspective from curative to palliative care. Furthermore, medical examinations and treatment was experienced to disturb the dying child thus causing unnecessary suffering. Parents found it difficult to leave their dying children even just for a moment. At the same time the space in PICU usually did not support closeness and parenting but rather separated the dying child from her/his family.

In conclusion, since it isn´t possible to always care for dying children in specialized palliative care units these results illuminate the importance of guidelines and training in palliative care in PICU and other acute pediatric care units. Children and their family ought to have the best care possibly when affected by life-limiting or life-threatening illness.