Hypoplastic Left Heart Syndrome: A Paradigm Case for Examining Conscientious Objection in Pediatric Practice

Journal of Pediatrics

Volumn 155, Issue 1, 2009, Pages 12-15

  Ross, Lainie Friedman ^a   Frader, Joel ^b,c  

^a UNIVERSITY OF CHICAGO   (United States)

^b NORTHWESTERN UNIVERSITY   (United States)

^c CHILDREN'S MEMORIAL HOSPITAL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CHILD HEALTH CARE; GENETIC DISORDER; HEART TRANSPLANTATION; HUMAN; HYPOPLASTIC LEFT HEART SYNDROME; LIFE EXTENSION; MEDICAL DECISION MAKING; MEDICAL ETHICS; MEDICAL PRACTICE; PALLIATIVE THERAPY; PRIORITY JOURNAL; QUALITY OF LIFE; RISK FACTOR; SURVIVAL RATE;

EID: 67650066793     PISSN: 00223476     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.jpeds.2009.03.008     Document Type: Note

References (30)

1. Kon A.A. Healthcare providers must offer palliative treatment to parents of neonates with hypoplastic left heart syndrome. Arch Pediatr Adolesc Med 162 (2008) 844-848
2. Wernovsky G. The paradigm shift toward surgical intervention for neonates with hypoplastic left heart syndrome. Arch Pediatr Adolesc Med 162 (2008) 849-854
3. Feudtner C. Ethics in the midst of therapeutic evolution. Arch Pediatr Adolesc Med 162 (2008) 854-857
4. Gordon B.M., Rodriguez S., Lee M., and Chang R.K. Decreasing number of deaths of infants with hypoplastic left heart syndrome. J Pediatr 153 (2008) 354-358
5. Tibballs J., Kawahira Y., Carter B.G., Donath S., Brizard C., and Wilkinson J. Outcomes of surgical treatment of infants with hypoplastic left heart syndrome: an institutional experience 1983-2004. J Paediatr Child Health 43 (2007) 746-751
6. Kon A.A., Ackerson L., and Lo B. How pediatricians counsel parents when no "best-choice" management exists: lessons to be learned from hypoplastic left heart syndrome. Arch Pediatr Adolesc Med 158 (2004) 436-441
7. Kon A.A. Assessment of physician directiveness: using hypoplastic left heart syndrome as a model. J Perinatol 24 (2004) 500-504
8. Renella P., Chang R.K., Ferry D.A., Bart R.D., and Sklansky M.S. Hypoplastic left heart syndrome: attitudes among pediatric residents and nurses towards fetal and neonatal management. Prenat Diagn 27 (2007) 1045-1055
9. Kopelman L.M. The best interests standard for incompetent or incapacitated persons of all ages. J Law Med Ethics 35 (2007) 187-196
10. Buchanan A.E., and Brock D.W. Deciding for others: the ethics of surrogate decision making (1989), Cambridge University Press, New York
11. Ross L.F. Children, Families and health care decision making (1998), Oxford University Press, Oxford UK
12. Tibballs J., and Cantwell-Bartl A. Outcomes of management decisions by parents for their infants with hypoplastic left heart syndrome born with and without a prenatal diagnosis. J Paediatr Child Hlth 44 (2008) 321-324
13. Cantwell-Bartl A.M., and Tibballs J. Place, age and mode of death of infants and children with hypoplastic left heart syndrome: implications for medical counseling, psychological counseling, and palliative care. J Palliat Care 24 (2008) 76-84
14. Rasiah S.V., Ewer A.K., Miller P., Wright J.G., Barron D.J., Brawn W.J., and Kilby M.D. Antenatal perspective of hypoplastic left heart syndrome: 5 years on. Arch Dis Child Fetal Neonatal Ed 93 (2008) F192-F197
15. Tabbutt S., Nord A.S., Jarvik G.P., Bernbaum J., Wernovsky G., Gerdes M., et al. Neurodevelopmental outcomes after staged palliation for hypoplastic left heart syndrome. Pediatrics 121 (2008) 476-483
16. Hinton R.B., Andelfinger G., Sekar P., Hinton A.C., Gendron R.L., Michelfelder E.C., et al. Prenatal head browth and white matter injury in hypoplastic left heart syndrome. Pediatr Res 64 (2008) 364-369
17. Cirak B., Wang P., and Avellino A.M. Implications of a neurosurgical intervention in a patient with a surgically repaired hypoplastic left heart syndrome. Pediatr Neurosurg 43 (2007) 488-491
18. Atallah J., Dinu I.A., Joffe A.R., Robertson C.M.T., Sauve R.S., Dyck J.D., et al., Western Canadian Complex Pediatric Therapies Follow-up Group. Two-year survival and mental and psychomotor outcomes after the Norwood procedure: an analysis of the modified Blalock-Taussig shunt and right ventricle-to-pulmonary artery shunt surgical eras. Circulation 118 (2008) 1410-1418
19. Jenkins P.C., Chinnock R.E., Jenkins K.J., Mahle W.T., Mulla N., Sharkey A.M., et al. Decreased exercise performance with age in children with hypoplastic left heart syndrome. J Pediatr 152 (2008) 507-512
20. Cheung R.T. Neurological complications of heart disease. Baillieres Clin Neurol 6 (1997) 337-355
21. Fallon P., Aparicio J.M., Elliott M.J., and Kirkham F.J. Incidence of neurological complications of surgery for congenital heart disease. Arch Dis Child 72 (1995) 418-422
22. Mercurio M.R., Peterec S.M., and Weeks B. Hypoplastic left heart syndrome, extreme prematurity, comfort care only, and the principle of justice. Pediatrics 122 (2008) 186-189
23. Kipnis K. Harm and uncertainty in newborn intensive care. Theor Med Bioeth 28 (2007) 393-412
24. Kobaly K., Schluchter M., Minich N., Friedman H., Taylor H.G., Wilson-Costello D., et al. Outcomes of extremely low birth weight (<1 kg) and extremely low gestational age (<28 weeks) infants with bronchopulmonary dysplasia: effects of practice changes in 2000 to 2003. Pediatrics 121 (2008) 73-81
25. In: Kattwinkel J. (Ed). American Academy of Pediatrics textbook of neonatal resuscitation. 5th ed (2006), American Academy of Pediatrics, Elk Grove Village, IL
26. Nuffield Council on Bioethics. Critical care decisions in fetal and neonatal medicine: ethical issues. Published November 2006. Available at: http://www.nuffieldbioethics.org/fileLibrary/pdf/CCD_web_version_22_ June_07_(updated).pdf Accessed October 10, 2008.
27. Savulescu J. Conscientious objection in medicine. BMJ 332 (2006) 294-297
28. LaFollette E., and LaFollette H. Private conscience, public acts. J Med Ethics 33 (2007) 249-254
29. Ross L.F., and Clayton E.W. Who should bear the responsibility?. N Engl J Med 356 (2007) 1890
30. Frader J., and Bosk C. The personal is political, the professional is not: conscientious objection to obtaining/providing/acting on genetic information. Am J Med Genet (2009) 151C:62-7