ACHD Advanced Directives and Discontinuation of Life in the Critical Care Environment

  • Matthias GreutmannEmail author
  • Daniel Tobler
Part of the Congenital Heart Disease in Adolescents and Adults book series (CHDAA)


A rapidly growing novel cohort of adults with complex congenital heart disease is evolving, many of them at high risk for cardiovascular complications and premature death as young adults. Although there is progress with medical and surgical treatment, caregivers will be inevitably confronted with an increasing number of patients dying under their care. Given their young age, these patients are at high risk of receiving (overly) aggressive or even futile treatments before their demise.

To date, discussions about end-of-life care, advance care planning, and discontinuation of care at the end of life are often avoided for fear of hurting patients’ and their families’ feelings and for uncertainties about the individual patient’s prognosis. This is in contrast with the majority of patients’ wishes to talk about these issues of care. There is in general a substantial lack of knowledge about advance care planning and resources assisting with compiling such documents.

Timely initiation of discussions about advance care planning and encouraging patients to complete advance directives and appoint substitute decision-makers will enhance patient autonomy and may prevent overly aggressive or futile treatment at the end of life.


Adult congenital heart disease End-of-life care Care planning Advance directives Palliative care Comprehensive care Prognosis Substitute decision-maker Supportive care 


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Copyright information

© Springer International Publishing AG, part of Springer Nature 2019

Authors and Affiliations

  1. 1.University Heart Center, Cardiology, University Hospital ZurichZurichSwitzerland
  2. 2.Department of CardiologyUniversity Hospital BaselBaselSwitzerland

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