Abstract
Purpose of Study
The decision for hysterectomy in unmarried, young females, especially those with disabilities, is laden with many social, ethical and medicolegal dilemmas.
Methods
In this case series, we present our challenges in the management of three disabled & unmarried girls who made a request for hysterectomy.
Discussion and Conclusion
Universal declaration of human rights, Constitution of India and the courts guarantee various rights to people with disabilities. However, there is a lack of comprehensive medicolegal framework to guide management in such cases especially in developing countries like India. This is an attempt to emphasise the need for specialised laws and medical board, for example ‘Board for hysterectomy in special circumstances' to help provide one-stop solutions to these women.
Keywords: Hysterectomy, Intellectual disability, Medicolegal, Ethical issues
Introduction
Performing hysterectomies in young, unmarried women with disabilities raises significant social, ethical, and medicolegal challenges. This account details three recent cases encountered, shedding light on the intricate decisions involved in such scenarios.
Case I
In January 2022, a 17-year-old, unmarried girl with spastic cerebral palsy faced irregular menses. Bedridden and dependent on others, her mother sought a hysterectomy due to difficulties in maintaining menstrual hygiene. A medical board recommended continued medical management after detailed discussions with family, opting for injection depot medroxyprogesterone acetate.
Case II
In August 2022, a 23-year-old woman with severe intellectual disability and diabetes mellitus type II presented with primary amenorrhea, abdominal pain, and a lump. Diagnosed with a high transverse vaginal septum, the family insisted on a hysterectomy after failed alternative discussions. The medical board, comprising two gynaecologists, a psychiatrist, and a hospital administrator, approved a total abdominal hysterectomy with bilateral salpingectomy. The procedure, performed after obtaining informed written consent from the parents, resulted in a pain-free post-operative period. The girl now attends a school for differently abled individuals, illustrating the positive impact of the intervention.
Case III
In October 2022, a 26-year-old, visually impaired woman with a history of transverse vaginal septum underwent multiple interventions. Facing recurrent issues, she and her family opted for a hysterectomy. Left hemihysterectomy with left salpingectomy was performed, along with drainage of a left tubo-ovarian abscess. The post-operative period was uneventful, and the patient, now a teacher for visually impaired children, experienced an improvement in her quality of life.
Discussion
Social Issues
Menstrual hygiene and unwanted pregnancies pose concerns for caregivers of intellectually disabled women, often making hysterectomy an appealing solution. Financial burdens of hormonal treatments in low-income countries further contribute to this preference. Caregiver's satisfaction with hysterectomy is high emphasising need to educate them about alternative non-invasive options like DMPA, implants, and progesterone-releasing intrauterine devices. Decisions for sterilisation should involve multidisciplinary consultations, discouraging routine non-therapeutic hysterectomies and prioritising education on improving menstrual hygiene. [1]
Ethical Issues
Performing a hysterectomy on minors with intellectual disabilities sparks ethical debates, especially when it results in permanent sterilisation. It’s crucial to balance the patient's best interest, autonomy, and reproductive rights. Historical cases, such as the Shirur home incident, highlight the importance of due process and adherence to human rights. International and Indian legal frameworks, including the Universal Declaration of Human Rights and the Mental Healthcare Act (2017), protect individuals from torture and degrading treatment, with Article 21 of the Indian Constitution emphasising the fundamental right to bodily integrity. The Rights of Persons with Disabilities Act (2016) ensures individuals with disabilities are not subjected to medical procedures leading to infertility without free and informed consent. It is imperative for medical professionals to approach such cases with caution, delaying decisions when possible, and ensuring that the chosen intervention aligns with the patient's best interests.
Medicolegal Issues
The legal framework in developing countries including India is largely ambiguous. The UK, Australia, and South Africa illustrate diverse legal frameworks. The UK emphasises individual representation in court, ensuring that decisions align with the patient's best interests. Australia mandates legal authorisation for sterilisation procedures, highlighting the need for a clear legal framework in such cases. South Africa has unambiguous laws, legalising hysterectomy as the method of choice in certain situations. In the USA, ACOG emphasises thorough assessment of patients with impaired mental abilities for informed consent. In cases of limited capacity, consultation with caregivers is recommended to make decisions in the patient's best interests. Physicians are urged to be mindful of potential pressure from family members with differing interests, and involvement of a hospital ethics committee is suggested in difficult cases. On the other hand, India doesn’t have any clear guidelines or legal framework in this matter. [2, 3]
Conclusion and Way Forward
In conclusion, addressing hysterectomy dilemmas in females with disabilities requires a nuanced, individualised & multidisciplinary approach. Clear guidelines and legal framework are required to prioritise women's interests while safeguarding their rights. The creation of a specialised board or tribunal, for example ‘Board for hysterectomy in special circumstances,’ is the need of hour in our country. This board could comprise professionals from various fields including gynaecologists, psychologists, psychiatrists, legal advocates, human rights agencies, caregivers, social workers, and experts with extensive experience in handling intellectual disabilities and teachers from special schools. It could provide one-stop solutions to these women.
Even though it's crucial to reject forced or coerced hysterectomies, adult women seeking hysterectomies for medical reasons should not be denied the procedure solely based on their childbearing status keeping in mind the principle of reproductive autonomy. Striking a balance between medical necessity, ethical considerations, and patient autonomy is of paramount importance.
Declarations
Conflict of interest
The authors declare that they have no conflict of interest.
Informed Consent
Informed consent was obtained from all individuals before submitting the case report for publication in the journal.
Footnotes
Jyotsna Yadav (MS, DNB) is an Senior Resident, Richa Sharma (MS, MNAMS, FICOG, FICMCH, FMAS) is a Professor, Kiran Guleria (MD, DNB, FICOG, FICMCH) is a Director Professor, AG Radhika (MD) is a Senior Specialist.
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
- 1.Pradhan M, Dileep K, Nair A, et al. Forced surgeries in the mentally challenged females: ethical consideration and a narrative review of literature. Cureus. 2022;14(7): e26935. 10.7759/cureus.26935.PMID:35989803;PMCID:PMC9378952. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Sterilization of women, including those with mental disabilities. ACOG Committee Opinion No. 371. American College of Obstetricians and Gynaecologists. Obstet Gynecol 2007;110:217–20. 12345/10987. [DOI] [PubMed]
- 3.ACOG Committee opinion no. 668 summary: menstrual manipulation for adolescents with physical and developmental disabilities. Obstet Gynecol. 2016;128(2):418–9. [DOI] [PubMed]