Pediatric palliative medicine: obstacles to overcome

The care of the dying child involves an appreciation of issues that are distinct from those faced in adult palliative care. Obstacles to effective palliative care for children start with the very basic need to assure pain control, and include difficult ethical issues of limits to treatment and the determination of the child's best interests. The remarkable progress in medicine has resulted in the ability of medical science to more accurately diagnose and treat most symptoms of the terminally ill. What remains underrepresented is the teaching and application of the tools at hand that can provide comfort and relief to the dying. In children, an appreciation of the whole person, including the unique role of parents, is needed when we are confronted with the difficult choices faced at the end of life. Given the lack of objective data on such basic issues as the assessment of pain, the relationship of thirst to dehydration, and the ability of technology to prolong the quality of life, it remains imperative that we remain open to different interpretations of the appropriate use of medical therapies. In areas such as the pharmacodynamics of opiates, where good data already exist, it remains unacceptable to have children suffer because of misperceptions and incorrect assumptions about appropriate drug use. The task of understanding the complexity of the child and family as they live through the experience of the child's dying is enormous. The need to give care and attempt the relief of suffering is just as great as the need to cure and should be no less an ultimate goal of medicine.