PEDIATRICS Vol. 103 No. 4 April 1999, p. e46

ELECTRONIC ARTICLE:
Variability in Physician Opinion on Limiting Pediatric Life Support

Received Aug 6, 1998; accepted Nov 30, 1998.

Adrienne G. Randolph^*, Mary B. Zollo, Marlene J. Egger^§, Gordon H. Guyatt, Robert M. Nelson^¶, and Gregory L. Stidham^#

From the ^* Departments of Anesthesia and Pediatrics, Children's Hospital and Harvard Medical School, Boston, Massachusetts;  Division of Pediatric Critical Care, Primary Children's Medical Center, and ^§ Department of Family and Preventive Medicine (Public Health Division), University of Utah, Salt Lake City, Utah;  Departments of Medicine and Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada; ^¶ Children's Hospital, Department of Critical Care Medicine, University of Wisconsin, Milwaukee, Wisconsin; and ^# Department of Pediatrics (Critical Care Service), LeBonheur Children's Medical Center, Memphis, Tennessee, for the Pediatric Critical Care Study Group.

Objective.  We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about withdrawal and limitation of life support in chronically ill patients. In these scenarios, the patient's primary caregiver was the pediatric oncologist. To evaluate the influence of subspecialty training, we compared the attitudes of the pediatric intensivists and the oncologists using scenarios describing critically ill oncology patients.

Design.  Cross-sectional survey. Each physician was randomly assigned 4 of 8 potential case scenarios.

Setting.  A total of 29 American pediatric ICUs.

Participants.  Pediatric intensive care and oncology attendings and fellows.

Intervention.  Systematic manipulation of patient characteristics in two hypothetical case scenarios describing 6-year-old female oncology patients presenting to the ICU after the institution of mechanical ventilator support for acute respiratory failure. Cases 1 through 4 described a patient who, before admission, had a 99% projected 1-year probability of survival from her underlying cancer and suffered from severe neurologic disabilities. Cases 5 through 8 described a patient who was neurologically normal before admission and had a <1% chance of surviving longer than 1 year because of her underlying cancer. Each physician was randomly assigned 2 cases from cases 1 through 4 and 2 cases from cases 5 through 8. Within each of these case scenarios, parental preferences (withdraw or advance support or look for guidance from the caregivers) and probability of survival (5% vs 40%) were manipulated. Before distribution, the survey instrument was pilot-tested and underwent a rigorous assessment for clinical sensibility.

Primary Outcome Measures.  Physicians ratings of the importance of 10 factors considered in the decision to withdraw life support, and their decisions about the appropriate level of care to provide. Respondents were offered five management options representing five levels of care: 1) discontinue inotropes and mechanical ventilation but continue comfort measures; 2) discontinue inotropes and other maintenance therapy but continue mechanical ventilation and comfort measures; 3) continue with current management but add no new therapeutic intervention; 4) continue with current management, add additional inotropes, change antibiotics and the like as needed, but do not start dialysis; and 5) continue with full aggressive management and plan for dialysis if necessary. Respondents also were asked whether they would obtain an ethics consultation.

Results.  A total of 270 physicians responded to our survey (165 of 198 potentially eligible pediatric intensivists and 105 of 178 pediatric oncologists for response rates of 83% and 59%, respectively). The respondents considered the probability of ICU survival and the wishes of the parents regarding the aggressiveness of care most important in the decision to limit life-support interventions. No clinically important differences were found when the responses of oncologists were compared with those of intensivists. In six of eight possible scenarios, the same level of intensity of care was chosen by less than half of all respondents. In three scenarios, 10% of respondents chose full aggressive management as the most appropriate level of care, whereas another 10% chose comfort measures only when viewing the same scenario. The most significant respondent factors affecting choices were professional status (attending vs fellow) and the self-rated importance of functional neurologic status. The majority of respondents (83%) believed that the intensive care and the oncology staff were usually in agreement at their institution about the level of intervention to recommend to the parents. Respondents reporting that they were more likely to withdraw life support than their colleagues were more likely to limit life-support interventions in the scenarios than those who reported that they were less likely to withdraw life support. At least 50% of respondents would request an ethics consult when 1) the probability of acute survival was 40% and the parents wanted to withdraw support in the patient with neurologic disabilities and 2) when the probability of survival was 5% and the parents wanted to advance support in the patient with a <1 year life expectancy from her underlying cancer.

Conclusions.  Acute prognosis, parental wishes, and functional status are significant determinants of limitations of life support for critically ill children. However, responses to these hypothetical patient scenarios reflect marked variability in decision-making across pediatric intensivists and oncologists. The degree to which this variability in decision-making exists in actual patient care requires additional study. Variability in decision-making may lead to unnecessary suffering, lack of fairness when making decisions about neurologically handicapped individuals, and inappropriate use of scarce resources in futile cases. Increased efforts should be directed at developing clearer recommendations for limiting life support in critically ill children.  Key words:  life support, withdrawal, decision-making, survey, end of life.

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