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Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss

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Abstract

Purpose

For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility.

Participants and methods

A multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer.

Results

Feelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child’s status quo. Letting go means parents give up their resistance to loss in service of their child’s well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child’s well-being as well as the evaluation of enacted parenthood.

Conclusion

For parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child’s real situation and needs.

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Acknowledgements

Funding for this study was supported by a grant from the Dutch Cancer Society.

We thank the members of the Presence Research Group for their assistance with data collection, respectively.

Site

Co-investigator

Research associate

Rotterdam, Erasmus MC

Rob Pieters/Auke Beishuizen

Inekee van der Vaart/Clementine Dekker/Maria de Jong

Groningen, UMCG

Willem Kamps

 

Nijmegen, Radboud MC

Peter Hoogerbrugge

Jacqueline Teunissen

Amsterdam, AMC

Huib Caron

Nelia Langeveld

Utrecht, UMCU

Marc Bierings

Birgitta Versluys

Author information

Authors and Affiliations

  1. Department of Nursing Science, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, E03.511, P.O.Box 85500, 3508 GA, Utrecht, The Netherlands

    Marijke C. Kars

  2. Department of Nursing Science, University Hospital/Campus Heijmans Blok A, De Pintelaan 185, 9000, Ghent, Belgium

    Mieke H. F. Grypdonck

  3. Department of Nursing Science, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, STR 3.130, P.O. Box 85500, 3508 GA, Utrecht, The Netherlands

    Maria C. de Korte-Verhoef

  4. Department of Pediatric Oncology/Haematology, Beatrix Children’s Hospital, University Medical Centre Groningen, P.O. Box 30001, 9700 RB, Groningen, The Netherlands

    Willem A. Kamps

  5. Department of Pediatric Oncology and Hematology/Medical Psychology, Radboud University Nijmegen Medical Centre, P.O.Box 9101, 6500 HB, Nijmegen, The Netherlands

    Esther M. M. Meijer-van den Bergh

  6. Health Sciences/Department of Metamedica, University Medical Centre Groningen, A. Deusinglaan 1, 9713 AV, Groningen, The Netherlands

    Marian A. Verkerk

  7. Department of Medical Ethics, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, STR 6.130, P.O. Box 85500, 3508 GA, Utrecht, The Netherlands

    Johannes J. M. van Delden

Authors
  1. Marijke C. Kars
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  2. Mieke H. F. Grypdonck
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  3. Maria C. de Korte-Verhoef
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  4. Willem A. Kamps
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  5. Esther M. M. Meijer-van den Bergh
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  6. Marian A. Verkerk
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  7. Johannes J. M. van Delden
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Corresponding author

Correspondence to Marijke C. Kars.

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Kars, M.C., Grypdonck, M.H.F., de Korte-Verhoef, M.C. et al. Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss. Support Care Cancer 19, 27–35 (2011). https://doi.org/10.1007/s00520-009-0785-1

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  • DOI: https://doi.org/10.1007/s00520-009-0785-1

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