title: The role of palliative care in critical congenital heart disease.
abstract: Patients with critical congenital heart disease are exposed to significant lifetime morbidity and mortality. Prenatal diagnosis can provide opportunities for anticipatory co-management of patients between palliative subspecialists and the cardiac care team. The benefits of palliative care include support for longitudinal decision-making and avoidance of interventions not consistent with family goals. Effectively counseling families requires an up-to-date understanding of outcomes and knowledge of provider biases. Patient-proxy reported quality of life (QOL) is highly variable in this population and healthcare providers need to be aware of limitations in their own subjective assessment of QOL.
authors.affiliation: Pediatric and Cardiac Critical Care, Division of Cardiology, Ann and Robert Lurie Children's Hospital of Chicago, Northwestern Feinberg School of Medicine, Box 21, 225 E, Chicago Ave, Chicago, IL 60611. Electronic address: mmazwi@luriechildrens.org.
authors.forename: Mjaye L
authors.initials: ML
authors.lastname: Mazwi
authors.affiliation: Neonatology and Palliative Care, Ann and Robert Lurie Children׳s Hospital of Chicago, Northwestern Feinberg School of Medicine, Chicago, IL.
authors.forename: Natalia
authors.initials: N
authors.lastname: Henner
authors.affiliation: Cardiac Critical Care Unit, The Hospital for Sick Children, University of Toronto School of Medicine, Toronto, Ontario, Canada; Department of Critical Care, University of Toronto School of Medicine, Toronto, Ontario, Canada; Department of Bioethics, University of Toronto School of Medicine, Toronto, Ontario, Canada.
authors.forename: Roxanne
authors.initials: R
authors.lastname: Kirsch
mesh_terms: D003376:Counseling; D016638:Critical Illness / Q000628:therapy*; D003657:Decision Making; D005260:Female; D006330:Heart Defects, Congenital / Q000000981:diagnostic imaging / Q000628:therapy*; D006801:Humans; D007231:Infant, Newborn; D010166:Palliative Care; D010347:Patient Care Planning; D011247:Pregnancy; D011788:Quality of Life; D016216:Ultrasonography, Prenatal
keywords: Critical Congenital Heart Disease; Palliative Care