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

• Published in: Supportive care in cancer Vol. 19; no. 1; pp. 27 - 35
• Main Authors: Kars, Marijke C., Grypdonck, Mieke H. F., de Korte-Verhoef, Maria C., Kamps, Willem A., Meijer-van den Bergh, Esther M. M., Verkerk, Marian A., van Delden, Johannes J. M.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer-Verlag 2011; Springer; Springer Nature B.V
• Subjects: Adolescent; Adult; Attitude to Death; Cancer; Child; Child, Preschool; Children & youth; Data Collection; Death & dying; Decision making; Female; Humans; Infant; Male; Medicine; Medicine & Public Health; Neoplasms - psychology; Nursing; Nursing Research; Oncology; Original Article; Pain Medicine; Palliative care; Palliative Care - psychology; Parent-Child Relations; Parenting; Parents & parenting; Parents - psychology; Quality of life; Rehabilitation Medicine; Terminal Care - psychology; Decision-making; Neoplasm; Parenting; Palliative care; End-of-life care; Quality of life
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-009-0785-1

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.