THE LIMITS OF PAEDIATRIC INTENSIVE CARE

F. Beaufils

Hôpital Robert Debré, Faculté "X. Bichat", Paris, France

Over the last 3 decades, progress in medical knowledge and technology have significantly improved the survival rate of increasingly premature babies, of neonates with severe congenital malformations and of infants and children with serious conditions. These advances were made at a price, raising in parallel more and more difficult ethical dilemmas: the percentage of very premature babies surviving with severe disabilities remains elevated and some of the patients treated for congenital defects may survive with physical and or mental deficiencies. Therefore, should we provide intensive care to all premature babies and neonates, under all circumstances? And if so, should we be prepared to end our cares when expecting severe disabilities? Similar questions arise when confronted with profound neurological sequaellae in paediatric survivors of head trauma, cardiac arrest or encephalitis. Among children with relapsing malignancies, intensive care may be needed for acute respiratory distress syndrome, septic shock or multiorgan failure. What level of support should we provide to those with an already shortened life expenctancy or when important physical or mental suffering is associated with survival? Since withdrawal of treatment accounts for up to 50% of the deaths in neonatal intensive care units and 65% in paediatric intensive care units, I will discuss the criteria leading to so serious decisions. While several major principles are generally agreed upon, other difficult ethical questions remain unsolved.

Major principles for which there is generally a consensus. 1) Any ethical decision should be made with the child's best interests as the primary consideration. 2) Decisions should never result from a single individual, but must be made by the health care team during a formal meeting. 3) Decisions must be based on facts (clinical evaluation, imaging, biological data …) which are complete and accurate. 4) Decisions based on a prognosis should be discussed in reference with the international literature. 5) There is no obligation to provide life-sustaining treatment when it is considered futile, harmful, or disproportionately burdensome. 6) Giving a drug with the primary intention to hasten death is rejected in almost all countries and at least considered unlawful. However, providing a treatment in order to prevent or relief suffering, may be justified in hopeless situations even if it may shorten the patient's life. 7) Decision on witholding or withdrawing intensive care should always be paralleled by continued optimal palliative treatment.

Unsolved remaining questions. What is the level of disability which suggests that treatments may be withdrawn and how do we determine the quality of life acceptable for a child with disabilities: the same level of disability may be a compatible with a life of quality for one patient and not for another. What are the parental responsibilities: in many countries like in the USA, parents are directly involved in any decision making regarding the withdrawal of treatments from their child. Conversely, in other like France, although the physician should be informed of the parental wishes, the parents are left out of the decision making. The reasons for such an attitude are numerous, including the influence on parental decisions or wishes of the way the information on prognosis is delivered and the physicians awareness of the parents guilt and feelings of responsibility in their child's death. In addition, both parents may not share the same wishes in many cases. What level of care and what treatments may be withdrawn or withhold: life saving interventions like mechanical ventilation? Vasoactive medications? Antibiotics treatments? Perfusions and nutrition?

Conclusions. In conclusions, discussing the limits of intensive care medicine raises the most difficult questions facing paediatric intensivists. Although no clear answers can ever be obtained, there is a definite place in the future for an evaluation of our practices.