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29 - Sterilizing procedures in minors with cognitive disabilities
- from Section 4 - Ethical issues posed by advances in medical technology and science
- Edited by Douglas S. Diekema, Mark R. Mercurio, Mary B. Adam
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- Book:
- Clinical Ethics in Pediatrics
- Published online:
- 07 October 2011
- Print publication:
- 08 September 2011, pp 166-173
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Summary
Case narrative
Sherry is a 14-year-old who was born with a chromosomal interstitial deletion and diagnosed with autism and moderate mental retardation (IQ measured at 45, adaptive functioning range averaging about a 4-year-old level, but with a wide range of abilities). She lives at home with her parents and attends a full-time special education classroom at her local public school. Her adaptive abilities include feeding herself but not preparing meals, and dressing herself but not choosing appropriate clothing. Her vocabulary includes about 20 rarely used words, and she generally communicates with sounds and emotive vocalization. She wears adult diapers and remains incompletely toilet trained in spite of extensive training efforts at home and school. Despite extensive behavioral training, she will sometimes smear feces if not changed promptly. Menarche began about a year ago, and she has had inconsistent menstrual periods over the past year, with bleeding lasting 3–10 days. Training to use pads has been unsuccessful, and she will sometimes take them off and smear blood. Her school now refuses to allow her to attend during her menstrual periods because of the management difficulty and blood exposure to other students and staff. During her menstrual periods she seems to have significant pain, and shows behavior changes including increased aggression, social withdrawal, and refusal to cooperate. She has also shown an increase in sexual behavior in the past several months, including two episodes of removing her clothes on the school bus, masturbating in public, and spending increased time with one particular boy that includes holding hands and stroking arms.
Sherry’s parents consulted with her pediatrician who suggested that they consider a hysterectomy to help with both menstrual management and prevention of pregnancy. The pediatrician referred her to an obstetrician/gynecologist and the ethics committee. The parents have articulated their concerns as:
Sherry shows an increase in sexual behavior, and they are concerned that she could become pregnant (a consulting geneticist says this is possible), and this would be awful for both Sherry and the unborn child.
Her periods have had a strong negative impact on her behavior and ability to take part in activities, especially school.
The increased aggression during her periods has raised questions about their continued ability to care for her at home.
While they intend to care for her at home as long as they are physically able to do so, they worry about the long-term risks for sexual abuse and pregnancy, if she ends up living in a group home or institution after they can no longer care for her at home.
17 - Adolescent pregnancy, confidentiality, and culture
- Edited by Paul J. Ford, Denise M. Dudzinski
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- Book:
- Complex Ethics Consultations
- Published online:
- 03 May 2010
- Print publication:
- 26 June 2008, pp 135-140
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Summary
Case narrative
Bena is a 14-year-old girl who is a member of a small, extremely close-knit immigrant community. She came to the emergency department with severe abdominal pain on a Tuesday night. She has been raised in the United States, speaks English as a primary language in school, and seems completely acculturated, but her mother and extended family immigrated shortly before she was born. Her mother does not speak English, and an interpreter is required for any discussions with staff. Bena lives with her mother and four siblings, but her mother was not available because she was working.
Bena said her pain had been going on for two days, and she initially denied sexual activity. When her urine pregnancy test came back positive, she admitted she had been sexually active with a cousin about her age. Further evaluation revealed an ectopic pregnancy. She was admitted to the hospital for further evaluation and treatment including consultation with an ob-gyn. Because this was a pregnancy-related issue, she could by state law consent to treatment on her own. Child Protective Services was consulted but did not open a case since this was apparently consensual relations with a same-age peer. Bena called home and left a message for her mother that she was in the hospital and that her mother should call as soon as possible.
Bena talked with the social worker and physician in the emergency department and requested that they not tell her mother that she was pregnant or sexually active. She stated that her mother would not be able to keep this information from Bena's aunt and that the entire community would soon know that she is pregnant.