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Lykke C, Ekholm O, Schmiegelow K, et al. End-of-life communication: a nationwide study of bereaved parents' perceptions. BMJ Support Palliat Care. 2019;doi: 10.1136/bmjspcare-2018-001709.
Lykke, C., Ekholm, O., Schmiegelow, K., Olsen, M., & Sjøgren, P. (2019). End-of-life communication: a nationwide study of bereaved parents' perceptions. BMJ supportive & palliative care, . https://doi.org/10.1136/bmjspcare-2018-001709
Lykke, Camilla, et al. "End-of-life communication: a nationwide study of bereaved parents' perceptions." BMJ supportive & palliative care vol. (2019). doi: https://doi.org/10.1136/bmjspcare-2018-001709
Lykke C, Ekholm O, Schmiegelow K, Olsen M, Sjøgren P. End-of-life communication: a nationwide study of bereaved parents' perceptions. BMJ Support Palliat Care. 2019 Jul 11; doi: 10.1136/bmjspcare-2018-001709. Epub 2019 Jul 11. PMID: 31427305.
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BMJ Support Palliat Care. 2019 Jul 11; doi: 10.1136/bmjspcare-2018-001709. Epub 2019 Jul 11.

End-of-life communication: a nationwide study of bereaved parents' perceptions.

BMJ supportive & palliative care

Camilla Lykke, Ola Ekholm, Kjeld Schmiegelow, Marianne Olsen, Per Sjøgren

Affiliations

  1. Department of Oncology, Rigshospitalet, Copenhagen, Denmark [email protected].
  2. National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark.
  3. Department of Pediatrics and Adolescent Medicine, Rigshospitalet, Copenhagen, Denmark.
  4. Department of Oncology, Rigshospitalet, Copenhagen, Denmark.

PMID: 31427305 DOI: 10.1136/bmjspcare-2018-001709

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.

© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.

Keywords: bereavement; children; communication; palliative care; parents

Conflict of interest statement

Competing interests: None declared.

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