Recommendations of How Pediatric Palliative Care Can Be Reconciled with Autonomy

Children and adolescents with chronic diseases suffer from a reduced health related quality of life and a restriction of their age-dependent development of autonomy. As a multisystemic disease is often characterized by an unpredictable trajectory there is an increased risk of secondary emotional and cognitive impairment. Inappropriate paternalistic behavior by caretakers can further reinforce regressive behavioral pattern and should, as other medical interventions, be minimized to the advantage of the growing autonomy. If a legal minor with increasing decision-making capacity declines a diagnostic or therapeutic intervention such a procedure should only be enforced if patients’ interests are served in the best possible way by this intervention. Acknowledging the increasing pluralistic approach of how to attain “good health” an ethical-case deliberation process should be sought in advance involving the patient, the caretakers and the medical personnel. The narrative and the hereby included values of children with chronic diseases should be respected as healthy bystanders can never fully anticipate their wishes or make an authentic decision on behalf of them. A wish-list and a child appropriate form of communication should be employed to help children in formulating their priorities. Seemingly irrational wishes of a dying child should not be disregarded offhand as they retain their importance for the grieving relatives. How far the wish for employing very expensive (orphan) drugs near the end of life should be based on quality adjusted life year is contested and should be discussed in a transparent way.