Written by Hal Siden
RESEARCH PROJECT: ongoing cancer-directed therapy in children at end of life
Lead investigators/designated PI’s on this project:
Natasha Datoo and Hal Siden
Est end date June 1, 2016
Traditional palliative care philosophy, derived from adult practice and influencing pediatric palliative care, has discouraged or at least not supported, ongoing cancer directed treatment close to the end of life. However, it is our experience that many families opt to continue therapies in addition to engaging in palliative care and comfort-oriented approaches. It is important to document this “dual-track approach” and determine how commonly it occurs. Documenting its prevalence may lead to changes in clinician attitude and practice. In turn, the two-path approach may be linked to parental hope, finding meaning in the difficult experience, and/or an expression of what it means to be a “good parent”. This research project leads to further opportunities for research into family experience. Our hypothesis is that a substantial number of families, when faced with their child’s incurable cancer, continue cancer-directed therapy through the child’s terminal phase.
By reviewing medical records of pediatric oncology patients who died, the aim is to determine the kinds of cancer-directed treatments given near the end of life. This project will help clinicians and staff examine the decision-making process of parents, allowing them to provide better support for the family.
- To describe the children receiving cancer-directed and supportive therapies (e.g. transfusions) at end of life.
- To describe the different medical care decisions parents may make at the end of life.
Methods and procedures will include retrospective review of medical records of children who died of cancer at BC Children’s Hospital and Canuck Place over a 2 year period (2012-2014). The approximate number of patients to be reviewed is 75. Data will be recorded regarding basic patient information (age, sex, religion, and community), disease information (tumor type, disease duration, curative treatments (Phase 1 or II trials), and oncologic and supportive treatments provided after the point at which it was determined that there was no curative intent).