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Why should we care about ethical and policy challenges in congenital heart disease?

James N Kirkpatrick, Beth Kaufman

    World Journal for Pediatric & Congenital Heart Surgery
    |June 27, 2013
    PubMed

    Insights

    Congenital heart disease (CHD) affects 1% of infants globally. Survivors face unique ethical and policy challenges as they age, offering insights for managing other chronic diseases.

    Area of Science:

    • Bioethics
    • Pediatric Cardiology
    • Adult Cardiology

    Background:

    • Congenital heart disease (CHD) impacts 1% of newborns worldwide.
    • Surgical advancements enable ~90% of children with severe CHD to reach adulthood.
    • An aging population with CHD presents novel ethical and policy considerations.

    Discussion:

    • A multidisciplinary conference addressed ethical and policy issues in adult and pediatric CHD.
    • Key topics included genetic testing, care transitions, transplantation, research, personal costs, and end-of-life care.
    • Experts explored challenges for a growing population with complex lifelong health needs.

    Key Insights:

    • Ethical dilemmas in CHD management are complex and evolving.
    • Successful treatment of CHD creates new challenges for long-term care and support.
    • The CHD population serves as a model for addressing ethical issues in chronic disease management.

    Outlook:

    • Continued dialogue is crucial for developing ethical frameworks and policies for CHD.
    • Future research should focus on the long-term psychosocial and economic impacts of CHD.
    • Addressing the unique needs of adults with CHD requires integrated, lifelong care strategies.

    Keywords:
    all levelscongenital heart disease (CHD)educationethicshealth policy (includes government regulation)quality of life

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