title: End-of-life care in adults with congenital heart disease:  now is the time to act.
abstract: OBJECTIVE
  There are increasing numbers of adults with congenital heart disease (CHD) and these patients remain at long-term risk of complications and premature death. This review focuses on the changing picture of adult CHD with more complex patients surviving, the challenges of balancing life-prolonging intervention, the barriers to discussing the end-of-life (EOL) issues and draws on the experience of other specialities in managing young patients.
  
  
  RESULTS
  The prevalence of adults with the most severe forms of CHD has increased, especially those with a Fontan circulation. The eventual decline is inevitable with limited treatment options. There should be a parallel palliative care approach in patients who are being considered for high-risk, life-prolonging interventions. Oncologists caring for the young patients with cancer and cystic fibrosis specialists have demonstrated the unique needs of young patients with chronic diseases that may be applicable to adult CHD patients and help with their EOL planning.
  
  
  CONCLUSIONS
  These patients require an early and proactive approach to EOL discussions, and the unique needs of young patients should be recognized. Further research is needed to develop local and national guidelines for the palliative care approach in these patients.
authors.affiliation: Department of Cardiology, Queen Elizabeth Hospital NHS Foundation Trust, Birmingham, UK. sarah.bowater@uhb.nhs.uk
authors.forename: Sarah E
authors.initials: SE
authors.lastname: Bowater
authors.forename: John K
authors.initials: JK
authors.lastname: Speakman
authors.forename: Sara A
authors.initials: SA
authors.lastname: Thorne
mesh_terms: D000328:Adult; D032722:Advance Care Planning / Q000592:standards* / Q000639:trends; D015897:Comorbidity; D018450:Disease Progression; D006330:Heart Defects, Congenital / Q000150:complications / Q000453:epidemiology / Q000523:psychology* / Q000601:surgery; D006801:Humans; D008017:Life Expectancy / Q000639:trends; D008875:Middle Aged; D010166:Palliative Care / Q000379:methods / Q000523:psychology* / Q000592:standards; D018802:Patient-Centered Care / Q000592:standards* / Q000639:trends; D015995:Prevalence; D060305:Transition to Adult Care / Q000592:standards