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research methodology

Often, physicians may join with parents in a desire to “do everything” to prolong the life of a gravely ill child, including providing some treatments of marginal or no benefit. They may argue that such care provides emotional comfort and hope to the parents and allows all involved freedom from any guilt they might experience had they not pursued every option. In other cases, physicians may resist such treatment because they believe it harms the child, violates their clinical values, and misuses limited community resources.12

Indeed, the effort to define a quantifiable concept of “futile” treatment

12  These physicians may, however, accept that it is humane to provide a limited amount of care that cannot benefit a patient but that can reduce the suffering of family members. Thus, even when a child is, by clinical criteria, brain dead, a physician may delay removal of life support to give parents time to absorb the information, to come to terms with the decision to remove life-support equipment, and to say their good-byes in peace.

Page 306Suggested Citation:“8. Ethical and Legal Issues.” Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.×SaveCancel

has been driven in considerable measure by physicians who want more protection against family demands for treatments with no or virtually no potential for benefit (see, e.g., the perspectives in Zucker and Zucker, 1997; see also Schneiderman et al., 1990; Rushton and Hogue, 1993; IOM 1997; Avery, 1998; Goldstein and Merkens, 2000). While accepting the concept that medical treatments are futile in certain situations, some ethicists, clinicians, and researchers have concluded that the term is so variably and imprecisely used that, in general, it ought to be avoided (Beauchamp and Childress, 1994).13 Others have concluded, further, that it is impossible to craft a precise operational definition of futility that can reliably and validly govern subsequent real-world clinical decisions (see, e.g., Lantos et al., 1989; Truog et al., 1992; Waisel and Truog, 1995).14 Rather, assessing futility is a judgmental process requiring “judicious balancing” of effectiveness, benefit, and burden specific to each patient and treatment (Pellegrino, 2000). In addition, some argue that proposals to limit futile treatment may mask “prejudices about those who are disabled, who come from disadvantaged social groups, or who are dying”