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Investigators at Children's Hospital Boston reviewed the medical records of children <21 years old who had advanced heart disease (AHD) and died between 2007 and 2009, to determine lifetime burden of disease, mode of death, and end-of-life experience. Lifetime burden of disease was determined by the number of billed procedures that took place in an operating room or at the bedside over the patient's life. Mode of death was defined as either withdrawal of disease-directed care, death during resuscitation, or comfort care after birth, based on medical record documentation. End-of-life experience was described using the location of death, length of final hospital stay, and presence of family at bedside at the time …
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