TY - JOUR
T1 - The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease
AU - Bertaud, Sophie
AU - Lloyd, David
AU - Laddie, Joanna
AU - Razavi, Reza
PY - 2016/4/21
Y1 - 2016/4/21
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=84964878605&partnerID=8YFLogxK
U2 - 10.1136/archdischild-2015-309789
DO - 10.1136/archdischild-2015-309789
M3 - Article
C2 - 27102758
AN - SCOPUS:84964878605
SN - 0003-9888
VL - 101
JO - Archives of Disease in Childhood
JF - Archives of Disease in Childhood
IS - 10
ER -