title: End-of-life care in hospitalized adults with complex congenital heart disease: care delayed, care denied.
abstract: 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.
authors.affiliation: Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, ON, Canada.
authors.forename: Daniel
authors.initials: D
authors.lastname: Tobler
authors.forename: Matthias
authors.initials: M
authors.lastname: Greutmann
authors.forename: Jack M
authors.initials: JM
authors.lastname: Colman
authors.forename: Mehtap
authors.initials: M
authors.lastname: Greutmann-Yantiri
authors.forename: Lawrence S
authors.initials: LS
authors.lastname: Librach
authors.forename: Adrienne H
authors.initials: AH
authors.lastname: Kovacs
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002423:Cause of Death; D015331:Cohort Studies; D003142:Communication; D005260:Female; D006331:Heart Diseases / Q000151:congenital* / Q000401:mortality / Q000628:therapy*; D006760:Hospitalization / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D008875:Middle Aged; D011787:Quality of Health Care / Q000592:standards*; D012189:Retrospective Studies; D013727:Terminal Care / Q000592:standards*; D055815:Young Adult