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Chapter 7 - Susie’s Voice

from Part II - The Most Vulnerable of Us

Published online by Cambridge University Press:  17 May 2025

Paul J. Ford
Affiliation:
The Cleveland Clinic Foundation, Cleveland
Denise M. Dudzinski
Affiliation:
University of Washington School of Medicine, Seattle
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Summary

This chapter in Complex Ethics Consultations: Cases that Haunt Us, the authors describe a 9-year-old girl newly diagnosed with T-cell acute lymphoblastic leukemia. She experienced virtually every side effect, reducing the normally high cure rate to 20%–50%. When remission was short, she would need high-dose chemotherapy. The child repeatedly said she would rather die than go through more treatment. Her parents were aligned with her wishes. The attending physician thought withdrawal was paramount to child abuse and soon the decision was left to the court. Parents decided to permit low-dose chemotherapy. The family’s lawyer developed warm relationships with the family, while the ethicist was the “enemy,” representing the hospital. They feared for the patient, who died months later.

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Chapter
Information
Complex Ethics Consultations
Cases that Haunt Us
, pp. 59 - 64
Publisher: Cambridge University Press
Print publication year: 2025

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References

Stork, LC, Matloub, Y, Broxson, E, et al. Oral 6-mercaptopurine versus oral 6-thioguanine and veno-occlusive disease in children with standard-risk acute lymphoblastic leukemia: Report of the Children’s Oncology Group CCG-1952 clinical trial. Blood, 2010 Apr 8; 115(14): 2740–8.CrossRefGoogle ScholarPubMed
Katz, ER, Jay, SM. Psychological aspects of cancer in children, adolescents, and their families. Clin Psychol Rev, 1984; 4: 525.CrossRefGoogle Scholar
Child Protective Services Law, 23 Pa. C.S.A. § 6301, et. seq., 2001.Google Scholar
Brody, B. Life and Death Decision Making. New York: Oxford University Press, 1988; 221–30.Google Scholar
Dubler, NN, Liebman, CB. Bioethics Mediation: A Guide to Shaping Shared Solutions. New York: United Hospital Fund, 2004.Google Scholar
Griffith, DB. The best interest standard: A comparison of the state parens patriae authority and judicial oversight in best interest determinations for children and incompetent patients. Issues Law Med, 1991; 7: 283, 300.Google Scholar
Prince v Massachusetts, 321 U.S. 158, 170 (1944), 170.Google Scholar
Evans, J. Are children competent to make decisions about their own deaths? Behav Sci Law, 1995; 13: 2741.CrossRefGoogle ScholarPubMed

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