What can we learn from the experiences of consultants around the time of a child's death?

AIMS: To describe how paediatric consultants report dealing with child and neonatal deaths as part of their daily work.

BACKGROUND: Paediatric consultants are involved with children and their families facing death through illness. This study focused on consultant's involvement around the time of death including: decision making and its associated difficulties, talking to parents and the use of coping strategies. Consultants with more than 5 years experience were asked what experience has taught them and consultants with less that 5 years experience were asked what they felt was the biggest change from being a registrar.

METHODS: Following Multicentre Research Ethics Committee (MREC) approval a pre-piloted self-administered questionnaire (with one reminder) was sent to 100 of the paediatric consultants within the South West Region.

RESULTS: There was a 61% response rate. Most consultants had experienced a variety of opinions when talking to parents about when to withdraw or withhold life sustaining treatment. Uncertainty (39%) and disagreement (44%) made decision making difficult. Discussion with colleagues (41%), 'honesty and time with parents' (28%) and planning or 'stage managing' talking with parents (38%) were well used strategies to deal with this. New consultants find responsibility and decision making the biggest change from being a registrar.

CONCLUSIONS: We can learn much from the experiences of consultants around the time of a child's death. Their approach during resuscitation and withdrawal or withholding life sustaining treatment describes many strategies that have been developed to ease the often complex decision-making process. Although consultants have built up personal support networks and individual coping strategies many recognize that these are not all encompassing and some harbour unresolved feelings of grief. Enabling health professionals to genuinely care, 'giving oneself totally yet preserving oneself totally' remains a challenge.