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Physician counseling, informed consent and parental decision making for infants with hypoplastic left-heart syndrome

J J Paris1, M P Moore, M D Schreiber

  • 1SJ Walsh Professor of Bioethics, Boston College, Chestnut Hill, MA 02467, USA. john.paris@bc.edu

Journal of Perinatology : Official Journal of the California Perinatal Association
|June 9, 2012
PubMed

Insights

The Norwood procedure offers improved survival for hypoplastic left heart syndrome (HPLHS) but raises ethical concerns. Informed parental consent requires full disclosure of surgical risks and developmental outcomes.

Area of Science:

  • Pediatric Cardiology
  • Bioethics
  • Congenital Heart Disease

Background:

  • Hypoplastic Left Heart Syndrome (HPLHS) historically lacked treatment options.
  • The development of the Norwood procedure in 1980 revolutionized HPLHS management.
  • Current options include the Norwood procedure, transplantation, or comfort care.

Purpose of the Study:

  • To evaluate the ethical implications of treatment choices for HPLHS.
  • To examine the balance between improved survival rates and potential long-term impairments.
  • To emphasize the importance of informed consent in pediatric cardiac surgery.

Main Methods:

  • Review of historical treatment protocols for HPLHS.
  • Analysis of the evolution of the Norwood procedure's survival rates.
  • Ethical considerations of parental decision-making in complex congenital heart disease.

Main Results:

  • The Norwood procedure's survival rate has improved from 30% to over 80%.
  • Physicians debate discontinuing comfort care due to improved surgical outcomes.
  • Medically informed parents may still opt for comfort care, citing neurological and motor skill impairments.

Conclusions:

  • The two-pronged approach to HPLHS treatment raises questions of equity and fairness.
  • Comprehensive parental counseling on long-term outcomes is crucial for informed consent.
  • Balancing survival benefits with quality of life is essential in pediatric palliative care decisions.

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