In an article on CNN.com, Bioethics program director Dr. Robert Klitzman discussed the difficult experiences of children coping with life-threatening diseases.
Klitzman describes the dilemma that patients and families face in incurable cases. They must choose between palliative care, which seeks "to improve their quality of life, relieve their pain, suffering and distress," and "aggressive interventions that may have limited, if any, chance of success – and that may, at times, cause side effects more painful than those of the illness itself."
The choice is particularly hard when the patients are very young. "Children facing severe illness often cannot fully understand the issues involved." Klitzman recounts the story of Julianna Snow, a five-year-old girl with an untreatable disease who told her parents she would rather "go to heaven than go back to the hospital."
In this case, Klitzman argues, "The best we can do may be to provide comfort, because Julianna's doctors apparently say she cannot be cured." At the same time, he stresses the importance of investing in "ongoing research aimed at developing effective treatments and even cures" and criticizes the budget cuts to the National Institutes of Health. "Research won't ease the tragic circumstances confronted by many today," writes Klitzman, but "it may help prevent many thousands facing them in the future."
Read the full article on CNN.