End-of-life care in hospitalized adults with complex congenital heart disease: Care delayed, care denied

Daniel Tobler, Matthias Greutmann, Jack M. Colman, Mehtap Greutmann-Yantiri, Lawrence S. Librach, Adrienne H. Kovacs

Research output: Contribution to journalArticlepeer-review

54 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)72-79
Number of pages8
JournalPalliative Medicine
Issue number1
StatePublished - Jan 2012
Externally publishedYes


  • Cardiac death
  • congenital
  • heart defects
  • palliative care
  • resuscitation

ASJC Scopus subject areas

  • Anesthesiology and Pain Medicine


Dive into the research topics of 'End-of-life care in hospitalized adults with complex congenital heart disease: Care delayed, care denied'. Together they form a unique fingerprint.

Cite this