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JANUARY / FEBRUARY 2015 :: 76(1)
Rural Health in North Carolina

This issue of the NCMJ discusses factors that influence the well-being of residents in rural communities in North Carolina. These include factors related to health care, such as physician recruitment and retention, the effects of hospital closures, and the need for behavioral health services, and factors beyond the health care sphere, such as child care, health behaviors, economic development, and access to health services.

SPECIAL REPORT

Medically Necessary Sterilization of a Minor With Intellectual Disability: A Case Report and Historical Perspective

Nathaniel A. Sowa, Donald L. Rosenstein

N C Med J. 2015;76(1):59-63.PDF | TABLE OF CONTENTS



Medical necessity may lead to secondary sterilization of individuals with intellectual disabilities, but legal statutes mandate that certain procedures be followed in these cases. In this article, we present a case of medically necessary sterilization of an individual with intellectual disability, and we discuss important legal statutes that guide this practice in North Carolina.

Case Report
A 16-year-old girl with Down syndrome and mild intellectual disability was admitted to the hospital for treatment of persistent menorrhagia. She had undergone menarche at 13 years of age, after which her menses were irregular, occurring every 1–4 months. Approximately 1 year before the current hospital admission, she had started having heavy menses with persistent vaginal bleeding. A gynecologist who was consulted concluded that the patient’s vaginal bleeding was the result of unopposed peripheral estrogen conversion in the setting of hypogonadotropic hypogonadism. She was started on therapy with progesterone and estradiol in an attempt to better regulate her menstrual bleeding. However, the patient’s heavy vaginal bleeding continued, and she required hospitalization for acute anemia. She underwent diagnostic hysteroscopy, with resultant dilation and curettage. She was also treated with high-dose intravenous estrogen, which was replaced with oral estrogen therapy after the surgery. The patient’s condition was successfully managed on an outpatient basis for the next year, with intermittent spotting and occasional adjustment of her oral estrogen treatment. However, she then began to have heavy bleeding again, which further progressed to passage of larger amounts of blood and blood clots.

After being admitted for the current hospitalization, the patient received intravenous estrogen therapy but continued to have heavy vaginal bleeding. Because her continued vaginal bleeding could not be controlled with medical management and was resulting in dangerous loss of blood, her gynecologist recommended laparoscopic hysterectomy as the definitive treatment for her condition. On the evening before the planned surgery, the hospital’s legal department requested an urgent psychiatric consultation. They specifically requested that a North Carolina–licensed psychiatrist or psychologist assess whether the patient was able to comprehend the nature of the proposed procedure and its consequences, and whether she was able to provide “informed consent” for the procedure. This request was made in order to comply with North Carolina General Statute 35A-1245 (see Table 1) [1], which addresses the “sterilization of a mentally ill or a mentally retarded ward in the case of medical necessity.”

Discussion
This case is interesting from a historical and practical perspective. In general practice, minors under the age of 18 years are not considered legally able to give informed consent unless they have been emancipated from their parents. Emancipation laws differ between states, but in North Carolina, there are only 3 circumstances that result in emancipation: marriage, military service, and emancipation by judicial decree after petitioning the court [2]. The patient in this case met none of these criteria and was thus still considered a minor for all legal purposes. Therefore, she was not able to provide informed consent for any medical procedure.

However, under current North Carolina law, any procedure that would result in sterilization of a mentally ill or mentally retarded person requires an evaluation of the individual’s ability to provide “informed consent,” as well as a determination as to whether the patient can understand the nature of the proposed procedure and its consequences, regardless of the patient’s age (see Table 1) [1]. The reason this bar is higher for mentally ill or mentally retarded individuals is related to the state’s history of involuntary sterilization.

Involuntary sterilization in the United States had its origins in the eugenics movement inspired by Sir Francis Galton in the late 19th century. Galton viewed the movement as having 2 goals: encouraging biologically fit stocks to reproduce, and discouraging inferior and subnormal stocks from reproducing [3]. These views were embraced by others, who extrapolated from Mendelian laws of inheritance that social ills resulted from characteristics transmitted across generations by those who were genetically “unfit.” Those considered unfit included individuals who were mentally retarded, mentally ill, or poor, as well as those with epilepsy and those who had committed crimes. Many eugenic propagandists of the time also believed that these “unfit” persons were sexually promiscuous and reproduced at higher rates than the rest of the population [4]. Thus they concluded that preventing such individuals from reproducing would benefit society as a whole. In the early 20th century, the development of safer surgical techniques for sterilization, namely vasectomy and tubal ligation, made it easier for eugenics proponents to push for wider use of such procedures [5].

The first sterilization law in the United States was passed in 1907 in Indiana, and within 10 years, 16 other states had followed suit [6]. These laws allowed (or in some cases required) the involuntary sterilization of those with mental retardation. Despite enthusiasm for these laws by some state legislatures, legally sanctioned sterilization was rarely performed in the early 1900s, because many laws faced legal challenges at the state and federal levels [6]. Until 1925, all eugenic sterilization laws that reached the courts were declared unconstitutional on grounds that sterilization constituted cruel and unusual punishment, violated due process, or was a violation of equal protections [7]. However, this changed when a court in Virginia upheld the constitutionality of that state’s sterilization law; the decision was appealed to the US Supreme Court, which heard the case Buck v Bell in 1927 [8]. The court ultimately upheld the law, clearing the way for states to pursue sterilization without fear of significant legal challenges. In his now famous opinion in the case, Justice Oliver Wendell Holmes stated:

It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind … Three generations of imbeciles are enough [8].

Of historical interest, it was later discovered that the defendant in the case, Carrie Buck, was actually of normal intelligence; she had been institutionalized not because of mental retardation but to hide the shame of her pregnancy, which had resulted from rape [9]. In fact, she had been committed to the institution by a relative of the individual who had committed the rape [9].

In the years following Buck v Bell, the number of states with sterilization laws increased to 33, and an estimated 25,000 individuals with mental disabilities were reportedly sterilized in the 1930s alone [3]. Most of these procedures occurred at state institutions, which had several aims in advocating for the practice: preventing the birth of children who presumably would not receive adequate parenting and who might be mentally retarded themselves; reducing the number of individuals who required institutionalization (by allowing sterilized individuals to live in the community); and opening bed space in institutions, thus saving the state money [10]. By 1960, an estimated 60,000 men and women in the United States had been involuntarily sterilized in accordance with state laws [4]. Nationally, this trend began to slow following World War II for several reasons. First, there was a change in public attitudes following awareness of the application of eugenic principles by Nazi Germany. Second, the US Supreme Court established that the right to procreate is fundamental. Finally, there was public backlash following the forced sterilization of a girl with developmental disabilities in a federally funded clinic, which resulted in the loss of federal funding for sterilization of those younger than 21 years of age, those deemed to be incompetent, and institutionalized individuals [6].

North Carolina first enacted sterilization legislation in 1919, and the state then passed an updated law in 1929. This latter law stated:

The governing body or responsible head of any penal or charitable institution supported wholly or in part by the State of North Carolina, or any sub-division thereof, is hereby authorized and directed to have the necessary operation for asexualization or sterilization performed upon any mentally defective or feeble-minded inmate of patient thereof . . . [11].

Those considered “mentally defective or feeble-minded” included those with mentally illness, mental retardation, or epilepsy [12]. A later change to the law allowed for sterilization of individuals who had not been placed in state institutions. In 1933, the state created the North Carolina Eugenics Board, which was made up of the commissioner of the Board of Charities and Public Welfare, the secretary of the State Board of Health, the chief medical officer of either of 2 state institutions for “the feeble-minded or insane,” the chief medical officer of the State Hospital at Raleigh (Dorothea Dix Hospital), and the attorney general [12]. The Eugenics Board was tasked with reviewing all cases, which were prosecuted by the head of the institution where the person was committed or by the county superintendent of welfare for those defendants who were not institutionalized. Sterilizations in the state were performed rarely at first but more frequently after World War II, and the number of sterilizations peaked in the early 1950s, when 704 individuals underwent the procedure during the period 1950–1952 [12]. The last sterilizations under the law were performed in 1974, although the process remained legal until 2003 [13].

All told, an estimated 7,600 sterilizations were performed in North Carolina from 1929 through 1974 [13]. Of these individuals, 85% were female; 40% were nonwhite [13]; 25% had been deemed mentally ill; and 70% had been judged mentally deficient [12]. North Carolina ranked 3rd in the nation for total number of people sterilized during the eugenics period [12]. After 1973, numerous abuses of the law were revealed, including coercion and implementation of the law in situations that appear to have been outside the scope of the intention of the law. These cases largely had to do with sterilization of black women who were on welfare and were believed by social workers to be a drain on society [14]. In December 2002, Governor Mike Easley apologized to the North Carolina victims who had undergone mandatory sterilizations [15], and in April 2003, North Carolina became the last state to repeal its sterilization law [12]. In 2010, Governor Bev Purdue created the North Carolina Justice for Sterilization Victims Foundation (now known as the Office of Justice for Sterilization Victims) to help identify victims and to serve as a point of contact for them [13, 16]; in 2011, she created the Governor’s Task Force to Determine the Method of Compensation for Victims of North Carolina’s Eugenics Board [17].

In light of this history, the North Carolina General Assembly passed the 2003 statute [1] that came into play in the case described previously. North Carolina General Statute 35A-1245 is entitled “Procedure to permit the sterilization of a mentally ill or a mentally retarded ward in the case of medical necessity” (See Table 1). The statute requires that “a guardian of the person shall not consent to the sterilization of a mentally ill or mentally retarded ward unless an order from the clerk has been obtained.” Further, it requires that “if a mentally ill or mentally retarded ward needs to undergo a medical procedure that would result in sterilization, the ward’s guardian shall petition the clerk for an order to permit the guardian to consent to the procedure.” The petition must contain a statement from a physician that “the proposed procedure is medically necessary and not for the sole purpose of sterilization or for the purpose of hygiene or convenience.” It must also contain a statement from a psychiatrist or psychologist “who has examined the ward as to whether the mentally ill or mentally retarded ward is able to comprehend the nature of the proposed procedure and its consequences and provide an informed consent to the procedure.” This petition is then sent to the clerk of the court for ruling. There is an appeals process for the guardian, the ward, the ward’s attorney, or any interested party if they do not agree with the ruling. In the case under discussion, the 16-year-old girl was determined not to have the ability to provide informed consent (based on her status as an unemancipated minor) nor to fully comprehend the full nature and consequences of the proposed procedure (based on the psychiatric interview). The clerk subsequently ruled that the procedure could move forward given the medical necessity of the case, the guardians’ consent, and the patient’s assent.

The law provides several points that warrant discussion. First, it requires that these steps be taken when a patient with “mental illness or mental retardation” needs a procedure that would result in sterilization. What qualifies as a “mental illness” is certainly debatable, and there is no provision in the statute that provides a clear definition or guidance. Second, the law is clear that the procedure must be “medically necessary.” This term is also rather ambiguous and allows for broad interpretation by medical providers. In this case, it was believed that hysterectomy was necessary to prevent further blood loss that could lead to death. Most would agree that the procedure was medically necessary in this case, but one could easily imagine cases in which the determination of what is “medically necessary” is more nuanced. Again, the statute does not provide a definition of this term or guidance. Finally, the sterilization procedure cannot be for the sole purpose of “convenience or hygiene.” Much has been written on this topic, because caregivers of women with development disabilities often approach medical providers about the difficulty in dealing with hygienic concerns surrounding menstruation [18]. An argument is often made that menstruation can also cause significant stress for the individual with disabilities. Despite the potential legitimacy of these concerns, most providers would initially recommend nonsurgical approaches to these issues. The law, at least in North Carolina, does not allow for any medical procedure that results in sterilization to be performed solely because of such concerns.

Finally, the wording of the North Carolina law is interesting in the sense that it applies only to patients who have a guardian. Guardianship typically implies that the individual is not legally competent to make medical decisions for himself or herself (either because of age or judicial decree). Such an individual therefore does not have the ability to provide informed consent to any medical procedure, although he or she certainly can still voice assent or dissent. It would thus appear redundant to require that a psychiatrist or psychologist determine whether a patient who has a legal guardian is able to give informed consent for medically necessary sterilization.

Table 2 shows how laws regarding involuntary sterilization vary across the 50 states. Providers outside of North Carolina should make themselves aware of the laws governing this aspect of treatment in the state where they practice.

In summary, the current case provides an opportunity to review the important history of sterilization in the United States and in North Carolina, which has shaped current statutes regarding sterilization of individuals with mental illness or intellectual disability. Laws regarding these policies differ between US states and between countries; medical and psychiatric providers should make themselves aware of the relevant policies and statutes in their area of practice, to ensure compliance with legal protections for their patients. When necessary, ethics committees and legal departments should be consulted to ensure compliance with state statutes.

Acknowledgments
Potential conflicts of interest. N.A.S. and D.L.R. have no relevant conflicts of interest.

References
1. Procedure to permit the sterilization of a mentally ill or a mentally retarded ward in the case of medical necessity. NCGS §35A-1245.

2. Parental authority over juveniles. Exceptions. NCGS §7B-3402.

3. Haavik SF, Menninger KA. Sexuality, Law, and the Developmentally Disabled Person: Legal and Clinical Aspects of Marriage, Parenthood, and Sterilization. Baltimore, MD: Paul H. Brookes Publishing Co.; 1981.

4. Reilly PR. Involuntary sterilization in the United States: a surgical solution. Q Rev Biol. 1987;62(2):153-170.

5. Sharp HC. Vasectomy as a means of preventing procreation in defectives. J Am Med Assoc. 1909;53(23):1897-1902.

6. Diekema DS. Involuntary sterilization of persons with mental retardation: an ethical analysis. Ment Retard Dev Disabil Res Rev. 2003;9(1):21-26.

7. Burgdorf RL, Burgdorf MP. The wicked witch is almost dead: Buck v. Bell and the sterilization of handicapped persons. Temple Law Q. 1977;50(4):995-1034.

8. Buck v. Bell, 274 US 200, 207, 208 (1927). https://supreme.justia.com/cases/federal/us/274/200/case.html. Accessed September 17, 2014.

9. Gould SJ. Carrie Buck’s daughter. In: Gould SJ, ed. The Flamingo’s Smile: Reflections in Natural History. New York, NY: W W Norton; 1985:307-318.

10. Gamble CJ. Sterilization of the mentally deficient under state laws. Am J Ment Defic. 1946;51(2):164-169.

11. An Act to Provide for the Sterilization of the Mentally Defective and Feeble-Minded Inmates of Charitable and Penal Institutions of the State of North Carolina. https://archive.org/stream/365466-north-carolina-sterilization-laws/365466-north-carolina-sterilization-laws_djvu.txt. Accessed September 19, 2014.

12. Kaelber L. Eugenics/sexual sterilizations in North Carolina. www.uvm.edu/~lkaelber/eugenics/NC/NC.html. Last updated October 21, 2012. Accessed June 14, 2014.

13. The Governor’s Task Force to Determine the Method of Compensation for Victims of North Carolina’s Eugenics Board. Final Report to the Governor of the State of North Carolina. January 2012. http://www.sterilizationvictims.nc.gov/documents/FinalReport-GovernorsEugenicsCompensationTaskForce.pdf. Accessed September 19, 3014.

14. Schoen J. Choice and Coercion: Birth Control, Sterilization, and Abortion in Public Health and Welfare. Chapel Hill, NC: University of North Carolina Press; 2005.

15. Sexton S. Are victims of eugenics sterilization program any closer to a fulfillment of promises? Winston-Salem Journal, June 29, 2014. http://www.journalnow.com/news/columnists/scott_sexton/are-victims-of-eugenic-sterilization-program-any-closer-to-a/article_7aa32894-0ab8-56bb-ac33-de703be3f271.html. Accessed April 18, 2014.

16. North Carolina Department of Administration (DOA), Office of Justice for Sterilization Victims. Sterilization victims Web site. http://www.sterilizationvictims.nc.gov/aboutus.aspx. Accessed June 15, 2014.

17. Purdue B. Executive Order 083: Governor’s Task Force to Determine Compensation for Victims of North Carolina’s Eugenics Board. http://digital.ncdcr.gov/cdm/compoundobject/collection/p16062coll5/id/12148/rec/4. Accessed September 18, 2014.

18. Paransky OI, Zurawin RK. Management of menstrual problems and contraception in adolescents with mental retardation: a medical, legal, and ethical review with new suggested guidelines. J Pediatr Adolesc Gynecol. 2003;16(4):223-235.


Nathaniel A. Sowa, MD, PhD resident physician, Department of Psychiatry, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
Donald L. Rosenstein, MD professor, Departments of Psychiatry and Medicine, University of North Carolina at Chapel Hill; director, Division of Hospital Psychiatry, University of North Carolina at Chapel Hill; director, Comprehensive Cancer Support Program, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.

Address correspondence to Dr. Nathaniel Sowa, University of North Carolina Hospitals, 101 Manning Dr, CB #7160, Chapel Hill, NC 27514 (nsowa@unch.unc.edu).