• © 2001 by American Society of Clinical Oncology

When the Tumor is Not the Target, Tell the Children

To The Editor:

Hilden et al¹ make an important contribution by contrasting the courses of two terminally ill children. They reiterate our observations made in 1977 and thereafter that the loneliness and fear of children who are not informed about their impending death can be abrogated by open discussions with them. We advocated, therefore, that children older than 5 years be informed about their impending death by the physician and/or parents when it becomes evident that they would be unresponsive to further therapy.^2-4 However, statements about incorporating palliative principles into the care of dying children, such as guiding parents gently to see their children’s perception of their outcome and discussing the art of aiding terminally ill children, remain too vague.^1,5 Specific guidelines are necessary. Recently, we suggested that the terminally ill child faces the most profound loss one can imagine and must respond to this state of severe grief.⁴ To overcome the grief, certain milestones need to be reached: acceptance of the loss, acceptance of a new reality, and the search for and attainment of new goals. If the latter steps are accomplished, the devastating effect of grief will be ameliorated. The goals of the children may differ: to be treated further with experimental drugs, to go home, to see their friends, or to grow spiritually.^2-4 These observations are consistent with Frankl’s postulate that a person searches for meaning in life and with Byock’s conclusion that the dying person has the potential for substantial personal growth.^6,7 If this premise is accepted, the team, in addition to engineering the optimal health care for a dying child, should try to convey this perception of life to the family and to assist them in finding new goals. This work by the team should be guided by the awareness that seeking to protect children from the knowledge of their impending death may deprive them of living to their full potential. Therefore, the inclusion in the team of professionals in psychology and those skilled in spiritual guidance is critical. Our more recently formulated model, grief reaction of a dying person, serves as a framework for our team in the specific palliative support of the child. We found that the majority of 73 children who participated in the program of open communication died with greater calm and composure.⁴

Our model provides essential insight into the behavior and potential growth of a dying child. It requires that the caretakers agree that a person has a deeply rooted need to search for meaning in his life. The art of taking care of a dying child, therefore, is to convey this perception convincingly to the child and his family and to assist the family as guideposts for the child’s journey.