ernment programs may cover more services but, in most cases, only after a family’s resources are virtually exhausted.
Notwithstanding the moral passion and intellectual energy devoted to ethical analyses and positions, the greater challenge may be in matching practice to principles, even when the principles are, by and large, not in dispute. Financial constraints and time constraints may undermine ethical practice, for example, when clinicians face appointment schedules that leave them little time for the kind of consensus-building discussions described below.
Violations of ethical practice and avoidable patient and family suffering also may arise from missteps involving what should be routine organizational procedures and actions. For example, despite years of attention, patients and families cannot be guaranteed that decisions made in advance about the use of life-sustaining medical treatments will be honored because information about advance directives may not follow the patient, for example, during a transfer from home to hospital. Such failures prompted the Oregon effort, described in Chapter 6, to develop tools and implement procedures that have increased the likelihood that patients will have their wishes honored (Tolle et al., 2002).
In some cases, health care professionals and health care organizations may be constrained by licensure or other regulatory restrictions from providing care they believe appropriate. For example, hospices may be restricted not just by Medicare and Medicaid coverage limits but also by licensure from providing a broad range of palliative services to all adults and children in need. Eliminating or revising these restrictions would take state and national action.
Further, despite various educational efforts, it is clear that physicians and other care team members sometimes misunderstand both the evidence base and the ethical context for life-support interventions and are not properly prepared—intellectually or emotionally—to inform and advise patients and families. Even with a correct understanding of science and ethical principles, some clinicians may lack the skills and attitudes to provide compassionate and effective communication with seriously ill children and their families. Education is not sufficient to change practice but it is necessary to provide requisite skills and it can shape attitudes and values.
Consistent with studies of care for adults, studies of pediatric care have documented considerable variation in attitudes about and use of life-sustaining technologies in real or hypothetical situations (see, e.g., Levetown et al., 1994; Randolph et al., 1997, 1999; Keenan et al., 2000; see also Asch et al., 1995; Fins, 1999; Breen et al., 2001; Puntillo et al., 2001). Variations in