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The doctor, being himself a mortal man, should be diligent and tender in relieving his suffering patients, inasmuch as he himself must one day be like a sufferer.

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Thomas Sydenham 1624–1689

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The treatment of a child with chronic illness from which he or she is not expected to recover but instead to die sometime in childhood is one of the most difficult challenges we face as physicians and caregivers.1,2 Children who are dying certainly deserve no less treatment than those who are ill but expected to live. This chapter is about the special aspects of delivering that treatment to children with chronic disease who do not have a reasonable likelihood to be cured and will die sometime in their childhood. It is also about the comfort treatment that requires the same, or perhaps more, planning, preparation, and forethought than we routinely give to children not expected to die. What we can offer to the dying is treatment and should always be considered so. We should treat our patients with the same care and compassion that we would wish ourselves and our children. This chapter and following chapters provide guidance regarding the compassionate care of the dying child, and their family.

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The skills required to treat a child with newly diagnosed acute lymphoblastic leukemia are vastly different than those required to care for a child with an incurable disease who is expected to die, and that child’s family. In the soon to die the physician’s presence, willingness to give time, devote skills in prescribing symptom relief, show compassion, and demonstrate excellent communication skills, in large part replace the life-prolonging equipment, the scalpel, and the x-ray beam. Palliative treatment with the intent to prolong life and palliative treatment to provide comfort without attempting to prolong life place enormous responsibilities on the physician and his or her immediate helpers. However, rewards from fulfilling those responsibilities can far outweigh any burdens. No areas of medicine cause more sadness or emotional turmoil to the professional caregiver than treating dying children, and likewise none has the potential for bringing greater personal satisfaction. It is hoped that this chapter will be of aid to physicians and other caregivers to achieve those benefits.

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The problems faced by children who will die in childhood from chronic disease are in many ways different from those of infants dying soon after birth in the neonatal nursery, or from accident victims and those with rampant infectious disease dying suddenly in the emergency room or intensive care unit. In those devastating but sudden tragedies, the patient, family members, or caregivers may not have had time to develop mutual bonds that allow trust and exercise of decision making. There is less or even no opportunity for the patient and family members to express their autonomy, and anticipatory bereavement is not possible. This results in heightened grief, anger, and distress ...

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