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According to the Institute of Medicine report When Children Die: Improving Palliative and End of Life Care for Children and their Families,1in 1999 approximately 55,000 children from birth through age 19 died in the United States. Some of these children and adolescents died as the result of an accident and had been completely healthy until death. Some infants and children died of diseases, but their deaths were unexpected because recovery had been considered a probability. Others died as the inevitable conclusion of their illness; recovery was considered at least unlikely and, in many cases, impossible. In all these situations, however, the death (or near-death, when the child eventually recovers) of a child is a horrendous event for the family members left behind. It is a life-altering tragedy, one whose stages family members will never forget, nor will they forget who said what to them before, during, and after the death. A careless remark by a health professional may be taken as dismissive of parental anguish and thus remembered in anger for a lifetime.

Although there seems to be agreement that students and residents are taught the medical techniques and procedures to care for dying children, there is far less agreement that they are equipped to talk to parents and patients about bad news, or to understand the psychosocial ramifications of a child’s critical illness or death for the family when they enter practice. Residents are also thought in many cases to be inadequately trained to to talk to and help the patient understand what is happening.2,3 This chapter will, it is hoped, add to such understanding.

End-of-life care focuses on preparing for an anticipated death, such as discussing “Do Not Resuscitate” orders and writing them, managing the medical aspects of the death, and relieving immediate symptoms. Palliative care seeks to prevent or relieve distress, both physical and psychic, for patients and families, and to enhance the quality of life in the face of an ultimately terminal condition. According to the American Academy of Pediatrics’ Committee on Bioethics, palliative treatments “focus on the relief of symptoms (eg, pain) and conditions (eg, loneliness) that cause distress and detract from the child’s enjoyment of life. It also seeks to ensure that bereaved families are able to remain functional and intact.”4

According to Friedman et al:

The American Academy of Pediatrics has also established a definition of palliative care, with special attention paid to pediatric patients. Pediatric palliative care seeks to enhance the quality of life in the face of an ultimately terminal condition. The treatments focus on the relief of symptoms and conditions that cause distress and distract from the child’s enjoyment of life. Such care includes the control of pain and other symptoms and addresses the psychological, social, or spiritual needs of children living with life-threatening or terminal conditions. The goal of palliative care is achievement of the ...

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