Progress in Pediatric Cardiology
Volume 23, Issue 1 , Pages 81-87 , September 2007

Ethical issues in children with cardiomyopathy: Making sense of ethical challenges in the clinical setting

  • Kristin C. Sokol

      Affiliations

    • Department of Pediatrics, University of Miami Miller School of Medicine, United States
    • Corresponding Author InformationCorresponding author. University of Miami Leonard M. Miller School of Medicine, Mailman Center for Child Development, PO Box 016820, Miami, FL 33101-6820. Tel.: +1 305 389 4700.
    • ,
  • F. Daniel Armstrong

      Affiliations

    • Department of Pediatrics, University of Miami Miller School of Medicine, United States
    • Mailman Center for Child Development, University of Miami Miller School of Medicine, United States
    • Holtz Children's Hospital at UM/Jackson Memorial Medical Center, United States
    • ,
  • Eliot R. Rosenkranz

      Affiliations

    • Congenital Heart Surgery, University of Miami/Jackson Memorial Hospital, United States
    • ,
  • Daphne Hsu

      Affiliations

    • Division of Pediatric Cardiology, Columbia University, United States
    • ,
  • Steven E. Schultz

      Affiliations

    • Department of Pediatrics, University of Miami Miller School of Medicine, United States
    • ,
  • G. Patricia Cantwell

      Affiliations

    • Pediatric Critical Care Medicine and Pediatric Intensive Care Unit, University of Miami Miller School of Medicine, United States
    • ,
  • Marco Ricci

      Affiliations

    • Division of Cardiothoracic Surgery, Holtz Children's Hospital, University of Miami Miller School of Medicine, United States
    • ,
  • Steven E. Lipshultz

      Affiliations

    • Department of Pediatrics, University of Miami Miller School of Medicine, United States
    • Holtz Children's Hospital at UM/Jackson Memorial Medical Center, United States

References 

  1. Lipshultz SE, Sleeper LA, Towbin JA, et al. The incidence of pediatric cardiomyopathy in two regions of the United States. N Engl J Med. 2003;348:1647–1655
  2. Strauss A, Lock JE. Pediatric cardiomyopathy — a long way to go. N Engl J Med. 2003;348:1703–1705
  3. Beauchamp TL, Childress J.F. Principles in Biomedical Ethics, 5th ed. New York: Oxford University Press, 2001:12, 13, 39, 63, 71, 113, 117,165, 176.
  4. Harrison C, Kenny NP, Sidarous M, Rowell M. Bioethics for clinicians: 9. Involving children in medical decisions. Can Med Assoc J. 1997;156:825–828
  5. Rhodes R. Transplantation and Adolescents. In:  Frankel LR,  Goldworth A,  Rorty MA,  Silverman WA editor. Ethical Dilemmas in Pediatrics: Cases and Commentaries. New York: Cambridge University Press; 2005;p. 196–211
  6. Jonsen AR, Siegler M, Winslade WJ. In: 5th ed.. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. vol. 87:New York: McGraw-Hill; 2002;p. 110
  7. Boudreaux AM, Tilden SJ. Ethical dilemmas for pediatric surgical patients. Anesthesiol Clin North America. 2002;20:227–240
  8. American Academy of Pediatrics Committee on Bioethics . Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995;95:314–317
  9. Frankel LR, Goldworth A, Rorty MV, Silverman WA. Ethical Dilemmas in Pediatrics: Cases and Commentaries. New York: Cambridge University Press; 2005:92, 93, 109,110, 111.
  10. Armstrong FD, Toledano SR, Miloslavich K, et al. The Miami Pediatric Quality of Life Questionnaire: Parent Scale. Int J Cancer. 1999;12:11–17[Suppl]
  11. Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res. 2001;10:347–357
  12. Varni JW, Limbers CA, Burwinkle TM. How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8591 children across age subgroups with the PedsQL™ 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:1–13
  13. Jacobs HH. Ethics in pediatric end-of-life care: a nursing perspective. J Pediatr Nurs. 2005;20:360–369
  14. Molmenti EP, Dunn GP. Transplantation and palliative care: the convergence of two seemingly opposite realties. Surg Clin N Am. 2005;85:373–382
  15. Wicclair MR. Medical futility: a conceptual and ethical analysis. In:  Mappes TA,  DeGrazia D editor. Biomedical Ethics. New York: McGraw Hill; 2006;p. 345–349
  16. Hopkins S. Withholding or withdrawing intensive care treatment in paediatric bone marrow transplant: a moral maze. Eur J Oncol Nurs. 2005;9:202–203
  17. Larcher VF, Lask B, McCarthy JM. Paediatrics at the cutting edge: do we need clinical ethics committees?. J Med Ethics. 1997;23:245–249
  18. Battle JC. Bioethics on NBC's ER: minor trespass. Am J Bioeth. 2001;[www.bioethics.net. Accessed on Feb 1, 2005]

PII: S1058-9813(07)00011-2

doi: 10.1016/j.ppedcard.2007.05.010

Progress in Pediatric Cardiology
Volume 23, Issue 1 , Pages 81-87 , September 2007

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