Though the prognosis for children with cancer in the developed world has greatly improved, still sadly a third will die from their disease. For the vast majority of these children, the realization that they probably will not be cured comes after a period of aggressive therapy. Families are faced with choices of whether to embark on clinical research trials, try a personalized management plan or focus on palliative care.
Professional societies recommend involving parents and children in decision making.
This project will begin to fill this void, and in so doing, provide the knowledge base necessary for developing clear and effective guidelines for including parents and children in decision making when cure is not likely. The bi-national nature of this study will aid in distinguishing the influence of scientific and technological factors from social ones. Both the US and the UK have similar standards and levels of care. Each has comparable access to technology and new discoveries in medical research. There are, however, differences in values and ideology as well as in the mechanisms by which care and treatment are funded.