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Ethics priorities in adult congenital heart disease

James N Kirkpatrick1, Yuli Y Kim, Beth D Kaufman

  • 1Cardiovascular Medicine Division, University of Pennsylvania, Philadelphia, PA 19104, USA. James.kirkpatrick@uphs.upenn.edu

Progress in Cardiovascular Diseases
|December 11, 2012
PubMed

Insights

Modern treatments for congenital heart disease create ethical challenges for adults living with this chronic condition. Addressing these requires multidisciplinary expertise in clinical care, research, and policy for adult congenital heart disease (ACHD).

Area of Science:

  • Medical Ethics
  • Cardiology
  • Healthcare Policy

Background:

  • Advances in congenital heart disease (CHD) therapies have led to a growing population of adults with CHD as a chronic condition.
  • This demographic shift presents complex ethical issues, including resource allocation and end-of-life care decisions.
  • A multidisciplinary approach is crucial for managing adult congenital heart disease (ACHD) patients, necessitating ethical expertise.

Purpose of the Study:

  • To compile and present the key ethical priorities in adult congenital heart disease (ACHD) identified during a 2012 conference.
  • To highlight ethical considerations in clinical care, research, and policy development for the ACHD population.
  • To address specific challenges including care for complex ACHD patients, healthcare transition, advance care planning, and cost management.

Main Methods:

  • The paper is based on discussions and findings from the "Ethical and Policy Challenges in Pediatric and Adult Congenital Heart Disease" conference.
  • A compilation of ethics priorities was synthesized from the conference proceedings.

Main Results:

  • Identified critical ethical priorities in ACHD care, research, and policy.
  • Highlighted the need for specialized ethical expertise to navigate challenges in ACHD patient management.
  • Focused on ethical aspects of clinical care, transition from pediatric to adult systems, advance care planning, and cost considerations.

Conclusions:

  • Addressing the ethical complexities in adult congenital heart disease (ACHD) requires a comprehensive, multidisciplinary strategy.
  • Prioritizing ethical considerations in clinical practice, research, and policy is essential for improving outcomes for ACHD patients.
  • The findings underscore the importance of proactive ethical planning and resource allocation in ACHD care.

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