Examining the inpatient hospital care experience of all children who died in Washington State, USA from 1990 to 1996, we found that infants and cases with CCCs (compared to children older than a year of age and those cases without CCCs, respectively) were significantly more likely to be hospitalized and to experience mechanical ventilation or some other procedure, in general and specifically during the terminal admission. While most infants who died were hospitalized early in their lives, the majority of older children who died were either never hospitalized or only during the last six months of their lives (and often not until the last month of life). Among older children and young adults who died with a CCC, a substantial proportion spent weeks to months in the hospital during the last year of their lives, with the rate of hospital admission rising as the date of death drew closer. Nevertheless, on any given day during that last year of life, the majority of these older CCC cases were not in the hospital.
This population-based study of end-of-life care for children provides a valuable perspective due to the breadth of its surveillance, extending beyond the confines of a single institution or a restricted range of disease conditions. Although this is the first population-level study to focus on the hospital care experience of children who died, our analysis was nevertheless limited in several ways. Only services arising from a hospital admission were observed, leaving the question of what ambulatory, home-based, emergency medical, or emergency department services these children received unanswered. We also do not know, from the vantage of the patient, family or physicians, which of the services received were desired, nor which desired services were never received. Although unlikely to have substantially influenced our findings, the study design did not permit us to account for migration of cases into the state of Washington during the period of observation, so that we failed to observe hospital utilization in another state, or migration out from the state, so that we failed to observe an unknown number of deaths. The observation period is now nearly a decade old, raising the possibility that usage patterns have changed since that time. Finally, this analysis was limited to fatal cases only, precluding inferences about how fatal cases differed from non-fatal cases.
Keeping these limitations in mind, we believe that this study has several important implications regarding the "who, where, when, and how" of P-EOL-B care. First, although these services are often thought of in the context of school age children or teenagers with advanced cancer, the preponderance of childhood death occurs during infancy and the majority of deaths are never due to cancer. For infant patients who die with a CCC, a hospital-based service system may be well situated to deliver timely and continuous P-EOL-B services, given the likelihood of early and extensive hospitalization for these children. For older children with CCCs and their families, however, various outpatient, community-based, or at-home services – such as pain management, home nursing, hospice, or bereavement counseling – would typically be necessary to care for them when they are not hospitalized. Indeed, with 44 % of all fatalities attributed to trauma cases that were associated with little or no hospital utilization, bereavement services are probably best conceived of as community-based with well-established ties to the emergency department, inpatient realm, and even the medical examiner's office. One element of a well-designed pediatric P-EOL-B care system would therefore be explicit relationships between health care facilities that care for sick and injured children, their available inpatient P-EOL-B services, and community-based services.
Second, the drastically increased tempo of hospitalization during the last month of life for children who died with certain underlying conditions, such as cardiac or neurological CCCs, suggests that the timely delivery of effective hospital-based P-EOL-B services will be greatly impaired if the means to prevent or relieve suffering are withheld until the other forms of medical care have been exhausted. As recommended by both the American Academy of Pediatrics statement and the Institute of Medicine report, a blended or complementary model of care – with the simultaneous delivery of different modes of care, from cure-seeking or life-extending to comfort-seeking or family-supportive – is how pediatric EOL care should ideally be delivered (Fig. ). Determining ways to incentivize health care providers and institutions to deliver such complementary care (through improved financing arrangements, payment systems, and organizational culture), and then to measure the degree to which such complementary care is actually delivered and the subsequent outcomes for children and families, will be important steps towards improving the quality of the pediatric P-EOL-B system.
Alternative models of how to provide palliative, end-of-life, and bereavement care.
Finally, regarding the ethics of pediatric end-of-life care, much of the literature has focused on the questions of when and how to withdraw mechanical ventilation and other forms of life support. Certainly these decisions warrant scrupulous attention. Yet this study suggests that the withdrawal of mechanical ventilation may have happened – at most – in fewer than half of all the cases. This proportion conforms with that found in a study of all deaths occurring in 60 children's hospitals, in which approximately 50 % of patients overall were mechanically ventilated during their terminal hospital admission [20
]. While the manner in which intensive care is withdrawn should still receive thorough and thoughtful scrutiny, we propose that the ethical comportment of the pediatric P-EOL-B care system would be enhanced by expanding the focus from individual clinical decisions to the broader issue of patients' and families' access to timely and effective P-EOL-B services, both within the walls of hospitals and within the context of their home communities.