Abstract 13163: End of Life in Adults With Congenital Heart Disease: A Call for Communication
Introduction: Many adults with congenital heart disease (CHD) die prematurely, but data regarding desire for and occurrence of end of life (EOL) communication are lacking. This is the first study to investigate the perspectives of patients and of health care providers (HCPs) regarding EOL communication with adults with CHD.
Methods: Adult CHD outpatients completed a survey that assessed their preferences for and experience of EOL communication. Background medical information was obtained from chart review. In addition, all HCPs within a national adult CHD network were invited to complete a parallel online survey. Responses were compared between the groups.
Results: Two-hundred patients (52% male, 35±15 years) and 48 HCPs (primarily cardiologists) completed surveys. Only 2 patients (1.0 %) indicated that they had discussed EOL planning with their medical team. In contrast, 50% of HCPs reported that they typically discuss issues including life expectancy, advance planning, and resuscitation preferences with their outpatients. Seventy-eight percent (156/199) of patients want their medical team to raise EOL issues; this preference was independent of disease complexity and sociodemographic factors. In contrast, HCPs reported that their EOL communication increased with increasing disease complexity (Figure 1). Further, 62% of patients, but only 38% of HCPs, favored initiating EOL discussions before diagnosis with a life-threatening complication (p < 0.001).
Conclusion: HCPs should explore desire for EOL discussions earlier, and not only in patients facing life-threatening complications or those with complex conditions. HCPs should ensure that indicated EOL discussions actually occur and/or are better understood by CHD patients. Increased attention to EOL issues is warranted to enhance care of patients with CHD across the lifespan.
- © 2010 by American Heart Association, Inc.