Life expectancy and end-of-life communication in adult patients with congenital heart disease, 40-53 years after surgery

Chiara Pelosi; Robert M Kauling; Judith A A E Cuypers; Elisabeth M W J Utens; Annemien E van den Bosch; Agnes van der Heide; Jeroen S Legerstee; Jolien W Roos-Hesselink

doi:10.1093/ehjopen/oead067

Life expectancy and end-of-life communication in adult patients with congenital heart disease, 40-53 years after surgery

Eur Heart J Open. 2023 Jul 13;3(4):oead067. doi: 10.1093/ehjopen/oead067. eCollection 2023 Jul.

Authors

Chiara Pelosi¹, Robert M Kauling¹, Judith A A E Cuypers¹, Elisabeth M W J Utens^{2

3}, Annemien E van den Bosch¹, Agnes van der Heide⁴, Jeroen S Legerstee³, Jolien W Roos-Hesselink¹

Affiliations

¹ Department of Cardiology, Erasmus MC, P.O. Box 2040, Rotterdam 3000 CA, The Netherlands.
² Academic Center for Child and Adolescent Psychiatry, Levvel, Meibergdreef 5, 1105 AZ, Amsterdam, The Netherlands.
³ Department of Child and Adolescent Psychiatry/Psychology, Erasmus Medical Center-Sophia Children's Hospital, Wytemaweg 80, Rotterdam, The Netherlands.
⁴ Department of Public Health, Erasmus MC, Dr. Molewaterplein 40, Rotterdam, The Netherlands.

Abstract

Aims: Although survival of patients with congenital heart disease (CHD) improved significantly over time, life expectancy is still not normal. We aimed to investigate how adult patients, their partners, and treating cardiologists estimated the individual life expectancy of CHD patients. Furthermore, preferences regarding end-of-life (EOL) communication were investigated.

Methods and results: In this study, we included 202 patients (age: 50 ± 5) who were operated in childhood (<15 years old) between 1968 and 1980 for one of the following diagnoses: atrial septal defect, ventricular septal defect, pulmonary stenosis, tetralogy of Fallot, or transposition of the great arteries. A specific questionnaire was administered to both the patients and their partners, exploring their perceived life expectancy and EOL wishes. Two cardiologists independently assessed the life expectancy of each patient. Most adults with CHD believed their life expectancy to be normal. However, significant differences were found between estimated life expectancy by the cardiologist and patients (female: P = 0.001, male: P = 0.002) with moderate/severe defects, as well as for males with mild defects (P = 0.011). Regarding EOL communication, 85.1% of the patients reported that they never discussed EOL with a healthcare professional. Compared with patients with mild CHD, significantly more patients with moderate/severe defect discussed EOL with a physician (P = 0.011). The wish to discuss EOL with the cardiologist was reported by 49.3% of the patients and 41.7% of their partners.

Conclusion: Adult patients, especially with moderate/severe CHD, perceived their life expectancy as normal, whereas cardiologists had a more pessimistic view than their patients. Increased attention is warranted for discussions on life expectancy and EOL to improve patient-tailored care.

Keywords: Congenital heart disease; end-of-life; life expectancy; long-term follow-up; psychology.