Background When a child with cancer no longer has a realistic chance of cure, the parents are faced with a range of decisions regarding further treatment options, place of care and place of death. Little is known however, how parents make decisions around end of life care. Better understanding of the parental decision making process could lead to more effective care for families in similar circumstances as well as a better allocation of resources.
Method This qualitative study used semi-structured interviews with four bereaved parents and subsequent analysis by IPA to descibe the parental decision making process.
Results During curative treatment, the child’s consultant was regarded as the main decision maker. At the end of life however, the responsibility for decision making lies solely with the parents (the children in this study were not informed of their impending death). Importantly, all participants describe disagreements with their partner, especially with regards to medical treatment decisions. In all families, the disputes were resolved by the mother acting as the main decision maker.
The most important factor in deciding in favour of further treatment was a belief that further treatment could be successful. The principal argument against further treatment was a concern regarding the quality of life for the child should the treatment succeed. The most important reason to take the child home to die was the parental perception that the child did not like the hospital. However, in deciding the place of death it was very important to ensure continued involvement of family and friends who had been supportive during the treatment. After the death of the child, engagement in altruistic and reciprocal activities was described as most helpful in bereavement.
Conclusion This retrospective pilot study allows some insight in the parental decision making process at the end of life of their child and calls for further study.