Methods: Retrospective review of all deaths occurring in pHtx patients between 3/14/2009-7/9/2015 at a single center. The causes, location, and level of support at the time of death were analyzed, as was the incidence of sudden cardiac arrest occurring out of hospital or in the emergency department (ED). Deaths that occurred prior to transplant hospitalization discharge were excluded. Results: Twenty-two patient deaths were analyzed. The median age of death was 12 (IQR 6,18) years. 18/22 (82%) died of cardiac causes, 3 (14%) died of infection, and 1 (5%) died of primary pulmonary disease. Of those who died of cardiac causes, 12 (67%) had no evidence of graft dysfunction or coronary vasculopathy at their most recent assessments, which occurred a median of 54 (IQR 24, 119) days before death. Fifteen (68%) of patients died in an ICU, 17 (77%) were intubated, and 8 (36%) died on mechanical support (VAD or ECMO). 11/22 (50%) patients suffered sudden cardiac arrest at home or in the ED prior to hospital admission. Conclusion: Most deaths following pHtx occur in the ICU while receiving advanced life-sustaining therapies. This may be due in part to the rapid evolution of life-threatening cardiac complications that manifest despite little evidence of preceding cardiac disease and often result in sudden death or outof-hospital/ED resuscitations. As a result, families may be left unprepared for end-of-life decision-making. These findings suggest the need for advanced care directives and ongoing discussions regarding resuscitative wishes for all pHtx patients, even in the absence of graft dysfunction.
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