A 26-year-old woman with Down syndrome and intellectual disability is brought to the gynecologist by her mother for discussion of contraceptive options. The patient lives with her mother, who is her legal guardian and is responsible for all her health care decisions. The mother is concerned because she recently discovered that her daughter is having sexual intercourse with a man with Down syndrome who attends her day program. The daughter is not currently using contraception. Based on her knowledge of the patient's level of functioning, the mother is very worried that her daughter will be unable to use contraception correctly or consistently. The mother says, "I would really like her to have a tubal ligation. It would be the best for everyone concerned. My daughter struggles to take basic care of herself and could never care for a baby. She has no understanding of what is involved." When questioned, the patient says, "I don't know about babies and birth control. Maybe my mom knows best, but I don't think I want to have an operation because they hurt." Which of the following is the most appropriate course of action?

Question

A 26-year-old woman with Down syndrome and intellectual disability is brought to the gynecologist by her mother for discussion of contraceptive options.  The patient lives with her mother, who is her legal guardian and is responsible for all her health care decisions.  The mother is concerned because she recently discovered that her daughter is having sexual intercourse with a man with Down syndrome who attends her day program.  The daughter is not currently using contraception.  Based on her knowledge of the patient's level of functioning, the mother is very worried that her daughter will be unable to use contraception correctly or consistently.  The mother says, "I would really like her to have a tubal ligation.  It would be the best for everyone concerned.  My daughter struggles to take basic care of herself and could never care for a baby.  She has no understanding of what is involved."  When questioned, the patient says, "I don't know about babies and birth control.  Maybe my mom knows best, but I don't think I want to have an operation because they hurt."  Which of the following is the most appropriate course of action?

Quizplus · Accepted Answer

Explanation: This patient is intellectually disabled, and her mother desires tubal ligation (sterilization) for her due to reasonable concerns about the patient's ability to raise a child. Medical decisions made on behalf of patients with intellectual disabilities should prioritize the patient's health and quality of life. Although the mother is this patient's legal guardian and health care decision-maker and although she may have the patient's best interests in mind (to avoid unplanned pregnancy), forced sterilization is unethical. Involuntary sterilization violates a patient's right to privacy, reproductive rights, and bodily integrity. In addition, surgical sterilization poses greater potential risks than nonsurgical contraceptive methods. Therefore, all patients, including those with intellectual disabilities, must freely consent to sterilization and are allowed to refuse the procedure. Because this patient does not freely consent (ie, "I don't think I want an operation because they hurt"), the procedure should not be performed (Choice B). Encouraging the patient toward a choice she does not want is also unethical, paternalistic, and coercive (Choice A). The provider should instead validate the mother's concerns about unplanned pregnancy and counsel both patient and mother regarding less invasive, long-acting, reversible contraceptives (eg, subdermal implant). (Choices C and D) Because the patient has an appointed guardian, she likely has already undergone evaluation for competency because guardianship typically implies that an individual is not legally competent to make his or her own medical decisions. Therefore, the patient may not choose a prescription contraceptive method without involvement of her legal guardian. However, her preferences should be elicited, and she should receive contraceptive counseling like any other patient. Educational objective: Involuntary sterilization of patients, particularly those with intellectual disabilities, is unethical due to the violation of reproductive rights and bodily integrity. Patients must freely consent to sterilization, and legal guardians or appointed health care decision-makers cannot consent on a patient's behalf. References: ACOG committee opinion. No. 695: sterilization of women, ethical issues and considerations. (http://www.ncbi.nlm.nih.gov/pubmed/28333823) Medically necessary sterilization of a minor with intellectual disability: a case report and historical perspective. (http://www.ncbi.nlm.nih.gov/pubmed/25621486) Female sterilization and cognitive disability in the United States, 2011-2015. (http://www.ncbi.nlm.nih.gov/pubmed/30095774)

A 26-Year-Old Woman with Down Syndrome and Intellectual Disability Is