End-of-Life, Death, and Bereavement

Approaching End of Life

The process of an individual’s death is as unique as the life that precedes it and is influenced by the nature and trajectory of the illness. In this chapter we focus on the death of a child. Approaching end of life may be the result of a predictable worsening of a prolonged illness or a precipitous and unexpected deterioration. Many diseases afford long periods of relative health and life engagement, a recovery to a prior level of functioning, when the threat of death recedes from view ( ). Physical changes and symptom burden that accompany acute or worsening chronic illness exact a considerable toll on an individual’s ability to cope regardless of the life stage.

Children’s developmental level shapes both how illness impacts their evolving sense of personal identity and their understanding of death. Infants and toddlers experience death as threatened separation from loved ones. Preschool-aged children generally view death as frightening, although often as temporary and reversible. That being said, children who have experienced or witnessed illness or loss often have a precociously mature understanding of death. Visible markers of illness (e.g., dramatic changes in weight, wheelchair dependence) can lead children to question, “Am I still me?” School-aged children’s sense of self is threatened when illness limits their ability to participate in their everyday activities, and fearfulness may accompany their deepening understanding of the finality of death. For adolescents, illness thwarts typical drive toward autonomy as they find themselves increasingly reliant on parents just when they ordinarily would be negotiating their independence. As adolescents become more capable of considering existential issues in a way younger children often cannot, illness also prompts contemplation on the meaning of their life.

As some children and adolescents mourn the loss of attaining future goals, they may also express hope, even when death is imminent. Their hopes may be fairly immediate (e.g., to graduate with their class) or be steeped in the fantasy of an open future (e.g., having children). Families and clinicians can mistake the child’s fantasy life for ignorance or denial, sometimes commenting, “Doesn’t that child know he is going to die? Someone needs to tell him.” While a rigid adherence to magical beliefs for the future may signal fear and avoidance, most children live with ongoing fluctuations in hope, an adaptive process in extraordinary life circumstances.

Sibling relationships are a crucial axis within the family ( ). The questions, concerns, and fears of healthy siblings often mirror those of the dying child: All face the threatened losses of a sense of control, identity, and relationships. For siblings who are absent from the hospital setting or shielded from medical updates, lack of information or misinformation may heighten anxiety. A feeling of shame at having a “different” family, anger around diminished attention and nurturance from parents, or being expected to take on responsibilities within the household can further heighten a sibling’s distress. Despite such challenges, the bond between the healthy siblings and the ill child is an invaluable reciprocal source of support that is too often overlooked.

For parents facing their child’s illness and death, time is not only shortened, but its order is shattered. Typical tasks of parenthood are disrupted and supplanted by the exigencies of medical care. Parents stand on the precipice between what exists in the present and what is yet to come. If parenting other children, they are inevitably torn between the needs of their dying child and those of the siblings who will remain.