Forgoing life support across borders: who decides and why?

I n this issue of Pediatric Critical Care Medicine, Dr. Devictor and colleagues (1) report on a survey of end-of-life practices in pediatric intensive care units (PICUs) in Western Europe. Last year, a similar study discussed practices in Argentina (2), and various publications have discussed aspects of the process in the United States (3–6). Are we beginning to have an accurate picture of the similarities and differences in caring for critically ill children who die in PICUs across social, cultural, and legal boundaries? Perhaps. Dr. Devictor and colleagues (1) set out to see if major cultural differences in Europe, roughly divided by the authors into northern (Anglo-Saxon influenced) and southern (Greek-Latin influenced) regions, affect the way children die in PICUs. The authors conclude that northern pediatric intensivists more often permit death through a deliberate process (47% of the time), involving a meeting of interested parties (physicians, nurses, parents), than do their southern colleagues. In the Greco-Latin region, Dr. Devictor and colleagues say, death occurs 70% of the time despite ongoing efforts to maintain life. In their study, this difference reached statistical significance. The authors also note that northern practitioners more often “inform” parents of a decision to forgo life-support than do southerners (95% of the time vs. 68%) and clinicians in northern units document decisions in medical records all the time, whereas a written discussion only appears half the time in the south. In both regions, physicians, especially the most senior clinicians, appear to reserve “final” decisional authority for withdrawing support to themselves, without necessarily expecting or seeking parental agreement. Thus, as appeared true in the study from Argentina, end-of-life practice in European PICUs seems more physiciancentered, or paternalistic, than legal and policy expectations would suggest for the United States. Whether practice in U.S. PICUs follows guidelines or not remains somewhat unclear. Detailed, although now possibly out-of-date, ethnographic studies of neonatal ICUs in the United States (7–9) have suggested that clinicians carefully orchestrate the process of recommending withdrawal of life support to families and probably retain more actual control of the process than law and policy would prefer. No similar studies of U.S. PICU practices have appeared. Several empirical and ethical issues emerge from reflection on the limited published information. With regard to methodological matters, the study by Dr. Devictor and colleagues and other studies of PICUs cannot help but raise as many questions as they answer. As social scientists know well, surveys, by their nature, can provide only limited insight. The findings depend on question construction and respondent interpretation. More importantly, even with well-validated, reliable questionnaires, we know that individuals’ expressions in surveys do not always accurately reflect how each behaves in “real life. ” Respondents tend to give surveyors answers that the respondents believe the questioner wants. Moreover, people do not always have a clear picture of how they usually act in the world or might act when confronted with the human, social realities of circumstances described hypothetically in surveys. Retrospective studies of actual practice have limitations, too. Medical records often lack precisely the sort of information about the process of decision making that one would like to have. Recall of events varies greatly with time, with what else was going on (in the PICU, with rejection of a submitted manuscript, at home, with one’s favorite sports team) at the time of a particular death, and with one’s feelings about the dying child, the family members, or others involved in the child’s care. In other words, if the PICU community has a serious interest in learning about the process of end-of-life decision making and how that may differ with clinical and sociocultural variables, it is time to commission one or more carefully designed participant-observation studies to document what is really going on. Qualitative social science, whether practiced by sociologists, medical anthropologists, or others, has the requisite tools to address the realities and complexities of forgoing life support in PICUs. Intensivists may have to overcome a degree of prejudice against nonquantitative, nonhypothesis-driven research in order to accept field researchers, although they would likely find that effort worthwhile. Without putting trained observers in PICUs to record and interpret how decisions get made, by whom, and under what circumstances, we will likely read more surveys and continue to ask if the results tell us much we do not already know. At the same time, intensive care pediatricians across the world need to examine some very important moral questions. Assuming that practice does vary between intensivists in the U.S. and those elsewhere, what ethical stance ought we take on that? Although many feel strongly about the importance of cultural sensitivity, do we want to say that physicians outside the United States justifiably make decisions without seeking and obtaining parental permission to stop life support? Is ethical and social relativism in life-and-death decisions acceptable? If not, what should and will leaders in pediatric intensive care do to achieve greater moral consistency across the profession? Some may believe that we expend too much time and effort on questions about end-of-life care in PICUs. After all, only a small minority of children passing through PICUs die. Compared with what happens in ICUs for adults, we should celebrate PICU successes and get on with the business of learning how to help the survivors do even better: have shorter stays, have less discomfort while in the PICU, suffer fewer complications, and so *See also p. 211.