OBJECTIVE: To investigate bereaved parents' perception of end-of-life communication with healthcare professionals after losing a child due to life-limiting diagnoses.
METHODS: A national register identified the causes of death of 951 children aged 0-18 years during the period 2012-2014. A previously described classification of life-limiting diagnoses identified 402 children. A modified version of the self-administered questionnaire 'To Lose a Child' was distributed to the parents of these 402 children, capturing their perceptions of communication with the healthcare professionals throughout the child's disease trajectory and imminent death.
RESULTS: A total of 193 bereaved parents, representing 38% of the identified children, participated in the study. Overall, 98% of the parents expressed the view that physicians should immediately disclose when curatively intended treatment options were exhausted. Some 79% of parents reported that information about their child's incurable illness was given in an appropriate manner; however, 42% said that information about the child's imminent death was given too late. Finally, 31% felt deprived of the option to say goodbye to their child in their preferred manner, and 56% said that their child's death was "a shock".
CONCLUSIONS: Parents request accurate and timely information. However, a substantial number of the parents surveyed reported that healthcare professionals communicated too late about palliative care and end-of-life issues. Even though healthcare professionals strive to communicate effectively with dying children and their parents, barriers were identified that may hinder even the best of intentions. National guidelines addressing communication issues and improved education of healthcare professionals should form part of any future agenda.