Hospice care is a treatment program for the end of life, providing the range of palliative care services by an interdisciplinary team, including specialists in the bereavement and end-of-life process. Typically, the hospice program uses the adult Medicare model, requiring a prognosis of death within 6 months and the cessation of curative efforts for children to receive hospice services. Recently some states have developed alternative pediatric models where curative efforts may continue while the higher level of coordinated end-of-life services may be applied.
Bereavement refers to the process of psychological and spiritual accommodation to death on the part of the child and the child’s family. Grief has been defined as the emotional response caused by a loss, including pain, distress, and physical and emotional suffering. It is a normal adaptive human response to death. Palliative care attends to the grief reaction. Assessing the coping resources and vulnerabilities of the affected family before death takes place is central to the palliative care approach.
Parental grief is recognized as being more intense and sustained than other types of grief. Most parents work through their grief. Complicated grief, a pathologic manifestation of continued and disabling grief, is rare. Parents who share their problems with others during the child’s illness, who have had access to psychological support during the last month of their child’s life, and who have had closure sessions with the attending staff, are more likely to resolve their grief.
A particularly difficult issue for parents is whether to talk with their child about the child’s imminent death. Although evidence suggests that sharing accurate and truthful information with a dying child is beneficial, each individual case presents its own complexities, based on the child’s age, cognitive development, disease, timeline of disease, and parental psychological state. Parents are more likely to regret not talking with their child about death than having done so. Among those who did not talk with their child about death, parents who sensed their child was aware of imminent death, parents of older children, and mothers more than fathers were more likely to feel regretful.
COGNITIVE ISSUES IN CHILDREN AND ADOLESCENTS: UNDERSTANDING DEATH AND DYING
The pediatrician should communicate with children aboutwhat is happening to them, while respecting the cultural andpersonal preferences of the family. A developmental understanding of children’s concepts of health and illness helpsframe the discussion with children and can help parentsunderstand how their child is grappling with the situation.Piaget’s theories of cognitive development, which help illustrate children’s concepts of death and disease, are categorizedas sensorimotor, preoperational, concrete operations, and formal operations.
For very young children, up to 2 years of age (sensorimotor), death is seen as a separation, and there is probably no concept of death. The associated behaviors in grieving children of this age usually include protesting and difficulty of attachment to other adults. The degree of difficulty depends on the availability of other nurturing people with whom the child has had a good previous attachment.
Children from 3 to 5 years of age (preoperational) (sometimes called the magic years) have trouble grasping the meaning of the illness and the permanence of the death. Their language skills at this age make understanding their moods and behavior difficult. Because of a developing sense of guilt, death may be viewed as punishment. If a child previously wished a younger sibling to have died, the death may be seen psychologically as being caused by the child’s wishful thinking. They can feel overwhelmed when confronted with the strong emotional reactions of their parents.
In children ages 6 to 11 years of age (late preoperational to concrete operational), the finality of death gradually comes to be understood. Magical thinking gives way to a need for detailed information to gain a sense of control. Older children in this range have a strong need to control their emotions by compartmentalizing and intellectualizing.
In adolescents (≥12 years of age) (formal operations), death is a reality and is seen as universal and irreversible. Adolescents handle death issues at the abstract or philosophical level and can be realistic. They may also avoid emotional expression and information, instead relying on anger or disdain. Adolescents can discuss withholding treatments. Their wishes, hopes, and fears should be attended to and respected.