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Background: We investigated preferences of adults with congenital heart disease (CHD) and their health care providers regarding end-of-life (EOL) communication., Methods: Adult CHD outpatients and health care providers completed surveys about preferences for and experiences with EOL communication. Responses were compared between patients and providers., Results: Two hundred patients (18-79 years) and 48 CHD health care providers (primarily cardiologists) completed surveys. Only 2 patients (1%) indicated that they had discussed EOL planning with their medical team. In contrast, 50% of providers reported that they typically discuss issues including life expectancy, advance planning, and resuscitation preferences with their outpatients. Seventy-eight percent (156/199) of patients wanted their medical team to raise EOL issues; this preference was independent of disease complexity and socio-demographic factors. In contrast, providers reported that their EOL discussions increase in accordance with disease complexity (p<0.001). Early initiation of EOL discussions, before diagnosis with life-threatening complications, was favored by 62% of patients but only 38% of providers (p<0.001)., Conclusion: Health professionals caring for adults with CHD should explore preferences of their patients for EOL discussions earlier in the disease course, and not only with patients facing life-threatening complications and/or with complex conditions. When EOL discussions do occur, health care providers should attempt to ensure that patients better understand these conversations. Increased attention to EOL issues is proposed in order to improve the care of patients with CHD across the lifespan., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

Adults with congenital heart disease represent a growing patient population. Notwithstanding dramatic improvements in survival and life expectancy over recent decades, many of these patients remain at risk of premature death from progressive heart disease and would benefit from the principles of palliative and end-of-life care. Data on end-of-life care in this patient group are, however, lacking. We report a retrospective study of 48 patients with congenital heart disease who died while admitted to our hospital (mean age at death 37 ± 14 years). We describe circumstances of death, end-of-life discussions, and the provision of end-of-life care. The majority of patients had complex congenital heart disease and were considered to be in the end stage of their disease. Despite this, only a minority of patients had documented end-of-life discussions prior to their terminal admission and most received continuing aggressive medical treatment up to their demise. Advanced palliative and end-of-life care strategies should be developed for and provided to this group of patients, with the dual aims of reduction of unwarranted therapies and enhancement of the quality of death and dying.