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Published on: July 18, 2014

Trigger Criteria for Advance Care Planning in Adults With Congenital Heart Disease: A Systematic Review

Mathias Possner1, Fabienne Schwitz1, Niculin Zach1

  • 1Department of Cardiology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.

CJC Pediatric and Congenital Heart Disease
|July 9, 2026
PubMed

Insights

Advance care planning (ACP) for adults with congenital heart disease (CHD) is underused due to unclear triggers. This review identified various proposed triggers, including routine follow-up and disease progression, to guide ACP initiation in CHD patients.

Area of Science:

  • Cardiology
  • Palliative Care
  • Health Services Research

Background:

  • Adults with congenital heart disease (CHD) have elevated risks for premature illness and death.
  • Advance care planning (ACP) is crucial for patient-centered care but is underutilized in this population.
  • A lack of validated criteria for initiating ACP conversations hinders its implementation in adults with CHD.

Purpose of the Study:

  • To systematically review existing literature.
  • To identify proposed trigger criteria for initiating ACP discussions in adults with CHD.

Main Methods:

  • A comprehensive systematic search was conducted across multiple major databases (MEDLINE, Embase, PsycInfo, CINAHL, Web of Science, Scopus, Cochrane Library).
  • Search terms focused on congenital heart disease (CHD) in adults and advance care planning (ACP) or palliative care.
  • Two independent reviewers screened articles and extracted data on ACP trigger criteria.

Main Results:

  • Twenty-one articles were included from 4257 screened, with a surge in publications from 2020-2024.
  • Routine follow-up was the most cited trigger for ACP initiation (71%), irrespective of defect complexity.
  • Disease progression and specific interventions were the next most frequent triggers (48%), followed by defect-specific criteria (33%).

Conclusions:

  • A broad spectrum of triggers for initiating ACP in adults with CHD exists, but consensus is lacking.
  • The identified triggers can guide clinical practice and form the basis for standardized criteria development.
  • Heterogeneity among studies presents a limitation to the findings.
Abstract

Keywords:
adult congenital heart diseaseadvance care planningpalliative careserious illness conversation

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