Abstract 16099: End of Life Care in Adults With Complex Congenital Heart Disease: Care Delayed, Care Denied
Introduction: Adults with congenital heart disease (CHD) may die prematurely from their disease. While a few previous reports describe modes of death, there are none regarding circumstances of death and nature of end of life (EOL) care in these patients.
Methods: We did a retrospective review of all cardiac-related deaths in adults with CHD who died during an admission to a large tertiary care centre between 2000 and 2009. Data collected included medical background, reason for admission, prior assessment for transplantation, mode of death, location in hospital at time of death, medical treatment in hospital prior to death, evidence for EOL discussions prior to and during the last admission, and nature of palliative care provided.
Results: We identified 72 patients (60% male, age 39 ± 14 years) of whom 58% experienced non-sudden, 6% sudden and 36% perioperative deaths. Most patients (93%) had disease of moderate or great complexity. The most common entities were cyanotic defects or Eisenmenger syndrome (17%), transposition complexes with subaortic right ventricle (14%), Fontan physiology (14%), and tetralogy of Fallot (10%). Prior to their last admission, 34 patients (47%) had been admitted at least once due to congestive heart failure and 20 patients (28%) had been previously assessed for transplantation. The most common reasons for admission were heart surgery (35%), heart failure (35%), and endocarditis (8%). Fifty-seven patients (79%) died in the ICU, 41 (57%) had been on mechanical ventilation, and 40 (56%) had attempted resuscitation. EOL discussions were documented for 34 patients (47%); discussions occurred directly with only 6 patients (3 prior to and 3 during admission) and with relatives as substitute decision-makers for 28 patients. EOL discussions occurred late (median 2 days, range 0 - 99 days before death). Eight patients (11%) were referred to palliative care.
Conclusion: Many patients dying from CHD have advanced disease. Despite this, only a minority had documented EOL discussions prior to their terminal admission and most received continuing aggressive treatment up to their demise. Better and earlier exploration of EOL issues and timely referral to palliative care may help reduce unwarranted therapies and enhance quality of dying.
- © 2010 by American Heart Association, Inc.