Anticipatory Bereavement and End of Life

The Institute of Medicine estimated that 55,000 children die each year in the United States, with just over half succumbing in the first year of life (Field and Behrman 2003). Following infancy, the most common causes of pediatric death include unintentional and intentional injuries, congenital anomalies, and malignant neoplasms (Feudtner et al. 2002; Hoyert et al. 2001). Most pediatric deaths occur in acute care hospitals, and of these, about 80% occur within PICUs (Watson et al. 2002). Two-thirds of PICU deaths follow planned withdrawal of life-sustaining interventions, and withdrawal of mechanical ventilation is the most proximate cause of death. Johnson (1997) offered a more intimate look at how deaths unfolded in one particular unit over the course of 1 year; frequent deaths, often more than one a day, placed extraordinary burden on the grieving families, other families who witnessed the death, and staff members.

Although the consultant will undoubtedly come face to face with dying children and their families, he or she may feel unprepared and uncertain about how to help and intervene (Meyer et al. 1996). If possible, the consultant should observe and apprentice with experienced staff members who tend to dying patients and their families, thereby becoming emotionally familiar with the culture of death in the PICU before being expected to intervene professionally. Consultants may be summoned under tense circumstances, when the likelihood of death looms large and end-of-life decision making and conversations need to occur. Most often, but not always, the dying child will be intubated and sedated, limiting the direct interventions that are possible. If the child is awake and alert, however, the most important aspects of psychological care include providing adequate pain management and comfort; facilitating a means for the child to effectively communicate his or her needs, wishes, and fears; fostering opportuni ties for tender, uninterrupted intimate time with loved ones; and offering a customized blend of anticipatory guidance, emotional support, and reassurance (Field and Behrman 2003).

Parents can differ widely in their capacity, approaches, and preferences when faced with news that their child has not responded to treatment and that death is likely. Parents identify several priorities for pediatric end-of-life care, including honest and complete information, ready access to staff, communication and care coordination, support and emotional expression by staff, preservation of the integrity of the parent-child relationship, and faith (Meyer et al. 2006). The psychiatric consultant can be of help in raising and sorting through these important issues and facilitating family-provider meetings and decision making.

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