Published online July 1, 2008
PEDIATRICS Vol. 122 No. 1 July 2008, pp. 186-189 (doi:10.1542/peds.2008-0143)
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COMMENTARY

Hypoplastic Left Heart Syndrome, Extreme Prematurity, Comfort Care Only, and the Principle of Justice

Mark R. Mercurio, MD, MAa,b, Steven M. Peterec, MDa,c and Bevin Weeks, MDa

a Department of Pediatrics
b Yale Pediatric Ethics Program, Yale University School of Medicine, New Haven, Connecticut
c Department of Pediatrics, Lawrence & Memorial Hospital, New London, Connecticut

Abbreviations: HLHS, hypoplastic left heart syndrome • EP, extreme prematurity • CCO, comfort care only

The first 300 words of the full text of this article appear below.

AT OUR INSTITUTION and at many other pediatric centers, there have been ongoing debates about the management of 2 distinct medical problems: hypoplastic left heart syndrome (HLHS) and extreme prematurity (EP). For each problem, physicians sometimes struggle with the question of when it is appropriate to offer parents the option of providing comfort care only (CCO).

HLHS and EP are very different diagnoses, and the debates about management have usually been separate and unrelated discussions. However, they share much in common. Both diagnoses are fatal in the absence of aggressive medical intervention. Even with aggressive management, there is significant mortality associated with both of them. All survivors face a difficult and expensive hospital course. For each condition, there is significant morbidity, including neurologic morbidity, among many of the survivors. Finally, for both diagnoses, some pediatricians have felt that aggressive medical or surgical care should be optional rather than obligatory, and parents should be given the option of providing CCO.

Given these features common to both HLHS and EP, it may well be that our approach to one should be informed, at least in part, by our approach to the other. The approach to both conditions should be guided by basic ethical principles. In particular, the principle of justice should be kept very much in mind.


   INFORMED CONSENT AND THE RIGHT TO REFUSE AGGRESSIVE MANAGEMENT
 
Informed consent, a fundamental tenet of modern medical ethics, requires that the patient give consent for any proposed treatment, such as surgery or mechanical ventilation, after having been presented the relevant information in an unbiased and noncoercive manner. Anticipated consequences of all treatment options, as well as their likelihood of success, should be reviewed.1 The right to refuse aggressive medical or surgical intervention seems, at first, to be consistent with the doctrine of informed consent. If a patient refuses to give consent for a . . . [Full Text of this Article]

Address correspondence to Mark R. Mercurio, MD, MA, Yale University School of Medicine, Department of Pediatrics, 333 Cedar St, PO Box 208064, New Haven, CT 06520-8064. E-mail: mark.mercurio@yale.edu