function) to patient characteristics (e.g., diagnosis, age). These guidelines note that cardiac arrest in children, unlike adults, is uncommon and is rarely a sudden event. It typically results from other than a primary cardiac cause and often is the final event associated with progressive shock or respiratory failure related to trauma, respiratory or neurological disorders, sepsis, or unexplained causes (sudden infant death syndrome [SIDS]) (AHA, 2000a). Survival is uncommon, and children who survive are often neurologically devastated. The guidelines note these dismal outcomes and urge the development of a consensus definition of when resuscitation would be futile. The guidelines mention only two specific circumstances in which not initiating resuscitation is indicated: (1) when patients have a clear advance directive asking health care workers not to begin resuscitation in the event of a cardiac arrest and (2) when patients show signs of irreversible death such as rigor mortis, decapitation, and dependent lividity or postmortem hypostasis (purple coloration from pooling of blood in dependent body areas) as agreed upon by a consensus of the medical community. The guidelines emphasize the lack of rigorous research to support many common elements of resuscitation and identify many areas for further research.

To the extent that research helps to reduce disagreement among clinicians, this will be a benefit in itself. Further, reducing disagreements among clinicians should also reduce clinician–patient or clinician–family conflicts that are stimulated or reinforced by evident variations in clinician views and practices.

Throughout this report, the limited knowledge base for much pediatric palliative and end-of-life care is documented. Chapter 10 includes recommendations and directions for research to strengthen the knowledge base for effective palliative and end-of-life care for infants, children, and adolescents. The recommendations focus on knowledge to improve clinical care, but better knowledge is also important to inform ethical and legal decisionmaking.

Litigation and Legislation

Disputes about which values should prevail in a patient’s care may end up in court when other conflict resolution approaches fail and death or another outcome has not intervened to make the conflict moot. The judicial system provides a socially sanctioned process for resolving individual disputes within a framework of statutes, regulations, and case law (i.e., precedents established by prior decisions). As courts have increasingly faced disputes that involve highly technical issues, judges and policymakers have struggled with questions about the ability of judges and juries to understand and weigh scientific and technical information, often presented by experts who differ in their presentation and assessment of this information.



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