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End-of-life communication: a nationwide study of bereaved parents’ perceptions
  1. Camilla Lykke1,
  2. Ola Ekholm2,
  3. Kjeld Schmiegelow3,
  4. Marianne Olsen3 and
  5. Per Sjøgren1
  1. 1 Department of Oncology, Rigshospitalet, Copenhagen, Denmark
  2. 2 National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark
  3. 3 Department of Pediatrics and Adolescent Medicine, Rigshospitalet, Copenhagen, Denmark
  1. Correspondence to Camilla Lykke, Department of Oncology, Rigshospitalet, Copenhagen 2100, Denmark; camilla.charlotte.lykke{at}regionh.dk

Abstract

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.

  • bereavement
  • children
  • communication
  • palliative care
  • parents
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Footnotes

  • Contributors CL conceptualised and designed the study, carried out the initial analyses, drafted the manuscript, and revised the manuscript. PS, KS and MO conceptualised and designed the study, supervised the study, and critically reviewed the manuscript. OE conceptualised and supervised the study, carried out the analyses and critically reviewed the manuscript. All the authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • Funding This study was funded by the Danish Childhood Cancer Foundation as a part of the corresponding author’s PhD fellowship.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The Scientific Ethics Committees for the Capital Region, Copenhagen, Denmark (H-16021831).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.

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