The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease.
Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real risk of premature death on many occasions throughout their childhood. In this paper, we discuss the advantages of a fully integrated palliative care ethos in patients with CHD, offering the potential for improved symptom control, more informed decision-making and enhanced support for patients and their families throughout their disease trajectory. These core principles may be delivered alongside expert cardiac care via non-specialists within pre-existing networks or via specialists in paediatric palliative care when appropriate. By broaching these complex issues early-even from the point of diagnosis-an individualised set of values can be established around not just end-of-life but also quality-of-life decisions, with clear benefits for patients and their families regardless of outcome.
Division of Imaging Sciences and Biomedical Engineering, King's College London, The Rayne Institute, St. Thomas' Hospital, London, UK.
Sophie
S
Bertaud
Division of Imaging Sciences and Biomedical Engineering, King's College London, The Rayne Institute, St. Thomas' Hospital, London, UK Department of Paediatric Cardiology, Evelina London Children's Hospital, Guy's & St Thomas' NHS Foundation Trust, London, UK.
David F A
DF
Lloyd
Department of Paediatric Palliative Care, Evelina London Children's Hospital, Guy's & St Thomas' NHS Foundation Trust, London, UK.
Joanna
J
Laddie
Division of Imaging Sciences and Biomedical Engineering, King's College London, The Rayne Institute, St. Thomas' Hospital, London, UK Department of Paediatric Cardiology, Evelina London Children's Hospital, Guy's & St Thomas' NHS Foundation Trust, London, UK.
Reza
R
Razavi
D000293:Adolescent; D016223:Advance Directives; D001601:Bereavement; D002648:Child; D002675:Child, Preschool; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D010166:Palliative Care / Q000706:statistics & numerical data*; D010290:Parents; D010342:Patient Acceptance of Health Care; D011368:Professional-Family Relations; D013727:Terminal Care / Q000706:statistics & numerical data; D013997:Time Factors
Cardiology; Palliative Care; advance care planning; congenital heart disease; end-of-life care