Ethical challenges when caring for dying children

Abstract

Caring in ethically demanding situations may be facilitated through presence, atmosphere, self-knowledge and time. The challenge does not demand highly technological solutions; these assets are readily available, no matter where on earth. However, there is a need to further investigate these prerequisites for caring, particularly when a child is dying.

Healthcare staff ’s experience in providing end-of-life care to children: A mixed-method review

“…All staff, including doctors, nurses, social workers, psychologists, and support staff in the hospital setting referred to their fears of grieving in public. 9,29,31,[33][34][35][36]39,41,44 Both doctors and nurses had anxieties around loss of their professional reputation 31,39 and ability to support families if they revealed their feelings and grief. 36 In the absence of any formalised support, staff felt they could not openly express their emotions and reported hiding in the bathroom to cry, 35 or crying on the way home by themselves.…”

“…29 While some nurses felt they were not supposed to grieve, 41 others felt it was important to express their emotions in order for parents to feel more comfortable expressing theirs. 33 However, the majority of staff felt they were required to put their grief to the side and return to work instantly, and had therefore no place to share their experiences. 29 Staff not only hid their grief in the workplace, but also in their personal lives.…”

“…The importance of finding meaning and making sense of a child's death was widely cited. 9,21,33,39,40,44 For doctors, the death of a child acquired meaning when they had exhausted all possibilities and felt they had contributed to a good death in relation to control of physical symptoms. 44 Nurses were able to find meaning in their involvement with the dying child's comfort and support, 44 along with supporting families.…”

“…34,35,[40][41][42]45 Attending the child's funeral helped bring a sense of closure to the special relationships built up with families, 9,34,39,40 and nurses reported difficulty adjusting when unable to attend 41,42 as they had no chance to say goodbye. 33,39 Self-care. A number of positive behaviours were mentioned as important for Distancing.…”

“…27 Debriefing. Debriefing was seen as important by most staff in relation to dealing with emotions, 45,47 bringing closure, 26,33 and sharing experiences. 26 However, timing appeared to be crucial, as if too late could actually be detrimental 'I may have found a 'good place' for that and all of a sudden, I'm back to the beginning'.…”