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Bioethics Forum Essay

Should He Have a Vasectomy?

Case Narrative

D is an 18-year-old man with autism and intellectual disability whose parents request a vasectomy. After receiving this request, his primary care physician seeks an ethics consultation from her affiliated hospital’s ethics committee asking for guidance on whether and how to respond to the parents’ request. The hospital ethics committee routinely supports affiliated outpatient providers with ethics consultation services. In this case, the ethics committee provides a three-person interdisciplinary ethics consultation team, which initially meets via Zoom with the primary care physician, a urologist with expertise in vasectomies, the patient, his parents, and the patient’s teachers.

D requires 24/7 care and adult supervision but is otherwise healthy. His parents, who also serve as his conservators, state that D has verbalized not wanting to have children and has not been sexually active. D’s parents express concern that if D were to have a child, he would be unable to provide care because he himself requires around-the-clock care.

To ensure that D has access to a decent quality of life, his parents have set aside money to support his future care in a private day program and co-ed group home. If D were to have financial responsibility for a child, his parents worry that this would significantly reduce the resources for his future and require him to reside in a public facility, where he might have a lower quality of life. D’s parents, teachers, and medical team assess that D is unable to understand that sexual intercourse can result in reproduction and in having to care for a child, despite having completed a sexual education class with individualized accommodations for his learning needs. They also agree that D is incapable of using a condom. When asked about a vasectomy (“a surgery that would prevent you from having children”), D readily agrees. But on further questioning, D is unable to explain what he is agreeing to, and, as his family notes, “he is a pleaser–he’ll agree to anything we ask him to do.” His medical team concludes that D lacks capacity to make decisions about a vasectomy.

The central question in this case is whether and under what conditions it would be legal and ethical to proceed with a vasectomy requested by D’s parents with D’s assent but without his full understanding, considering the history of forced sterilization of individuals with intellectual disabilities in the United States.

Ethical Analysis and Process

In evaluating D’s parents’ request, the medical and ethics consultation teams were mindful of that history. U.S. policies resulted in the sterilization of over 60,000 individuals in over 30 states throughout the 20th century. Unfortunately, forced sterilization continues today in some countries and often dehumanizes marginalized populations deemed less worthy of reproduction and family formation, resulting in the disproportionate sterilization of minority groups. The teams also noted the ongoing explicit and implicit bias against people with disabilities in the health care system, and evidence that they have significantly worse health outcomes than people without disabilities.

Sterilization procedures can improve the life of an individual by giving them greater autonomy and control over their reproduction and sexual function. However, sterilization without informed consent violates the fundamental right to keep a person free from unwanted intrusions, including intrusions into their sexual and reproductive preferences and abilities.

The three-person ethics consultation team sought a broad range of perspectives for this case, including those of the full 30-member hospital ethics committee, representatives of disability advocacy organizations, and the health care system’s legal and risk services department. The ethics team asked D’s parents about their views on D’s wishes and best interests and on the impact of a vasectomy on D’s well-being. The team also asked them about the use of alternatives such as condoms, detailed accounts of D’s recent social history, and what they hoped and planned for D’s future. The ethics team met separately with D and asked him about his opinion of children and whether he thought his views might change in the future. D responded, “Jessica and Todd [D’s younger cousins] are so annoying. I don’t want to have kids.”The team also questioned D’s comprehension of sexual reproduction, contraception, and surgical intervention. When D was unable to describe sexual reproduction, the team described it using second-grade terminology and asked D to teach back his understanding. He was unable to do so.

The ethics consultation team reached out via email, phone, and Zoom to representatives from three regional and national disability rights organizations. The representatives noted the possibility that, with maturity and further education, D’s views about children might change and he might become able to use a condom. The disability rights advocates’ considerations were included in the final ethics consultation report, which was shared with D’s doctors and parents.

If D underwent a vasectomy now and later wished to have a child, a vasectomy reversal procedure or sperm retrieval could be considered. D’s urologist estimated that there would be a roughly 80% probability of successful pregnancy using one or both of these procedures in the best-case scenario. D’s urologist recommended that his parents set aside funds to allow for either of these techniques if D or his surrogate decision-makers were to change their mind about reproduction.

It is the practice of the ethics consultation team to discuss with the hospital’s legal and risk services department any legal issues and constraints surrounding the ethical question. For this case, the sterilization procedure laws in D’s state of residence specify that if an individual is unable to provide informed consent, or if the individual is under a conservatorship or guardianship (e.g., because of an intellectual disability), sterilization is prohibited unless a probate court concludes that the procedure is in the individual’s best interest. As part of this process, the probate court appoints a panel of experts to help make the decision.

The Decision

The ethics consultation team determined that vasectomy was in D’s best interest. The team also recommended that funds be set aside for vasectomy reversal or sperm retrieval, as well as for providing more extensive sexual education to D that appropriately accommodates his learning disabilities.

Under state law, the probate court considers the testimony and recommendations of relevant experts including physicians and ethics consultants before making the final decision. In this case, the probate court agreed with the ethics team and ruled that the procedure was in D’s best interest.

Benjamin Tolchin, MD, is the director of the Yale New Haven Health Center for Clinical Ethics, and an associate professor of neurology at Yale School of Medicine. @btolchin, LinkedIn: https://www.linkedin.com/in/benjamin-tolchin-9b6b4a73

Kristina Gaffney is a member of the Bridgeport Hospital and Yale New Haven Hospital ethics committees and a research associate at the Yale Center for Outcomes Research and Evaluation (CORE). LinkedIn: https://www.linkedin.com/in/kristinagaffney

Series Editors’ Comment: Weighing an Individual’s Best Interest and Historical Injustice

The clinical ethicists involved in D’s case provide a nuanced and empathetic approach to addressing a profoundly complex ethical issue. Sterilization of people with intellectual disabilities should prompt careful deliberation. We believe the clinical ethicists were right to prioritize spending time with D and striving to help him understand the decision before him, even if they could not elicit his preferences. They demonstrate the importance of including D’s voice while also recognizing the impact of his intellectual disability on informed decision-making. Additionally, they recognize the importance of talking with D’s parents to help understand D’s lived experience, as well as his values and preference.

The team’s engagement with disability advocates underscores a dedication to inclusive decision-making. Getting their input aligns with ethical best practices and serves as a safeguard against the historical injustices of forced sterilization that persist today. Clinical ethicists should be wary of repeating historical injustices perpetrated against minoritized communities, but also realize that they cannot remediate those injustices by way of recommendations for a particular patient. Denying patients with disabilities access to medical procedures that were once unethically forced upon them can also be a form of disability discrimination. In other words, it would be an overcorrection to deny sterilization to all intellectually or developmentally disabled individuals.

D’s case also highlights the difficult terrain that clinical ethicists encounter when their recommendation is brought before a court for further review. D’s vasectomy was reviewed in probate court per state law. While in this case, the court agreed with the ethics team’s recommendation, one can easily imagine a situation in which a court’s decision and an ethics team’s recommendation differed. Had the court given permission to move forward with D’s vasectomy after the ethics team recommended against it, the medical team would have had to make a difficult decision: whether to go against the ethics recommendation or to transfer D to another health care facility.

D’s case brings attention to the complicated realities of guardianship, or conservatorship. While D’s parents demonstrated love, care, and thoughtful insight into D’s capacity and wishes and appeared to advocate for his best interests, not all individuals under guardianship are so fortunate. In some cases, guardians have complete decision-making power, eclipsing the autonomy of their wards. This raises concerns about the potential for abuse or neglect of a ward’s true interests and preferences. D’s case is made easier by the nature of his parents’ involvement and their willingness to engage in this process, highlighting the importance of ensuring fair and inclusive decision-making processes for individuals who may lack adequate representation.

Finally, D’s case underscores the necessity of making ethical recommendations even in spaces of uncertainty. The ethicists in this case had to balance myriad factors, including legal constraints, historical context, and D’s immediate and future well-being. It is crucial for ethicists to remain flexible, reflective, and responsive to the nuances of each case, ensuring that their recommendations are not only ethically sound but also practically feasible and sensitive to the unique circumstances of the individuals involved.

Lingering questions

Even if moving forward with vasectomy is the best decision for D, might there be long-term psychological and emotional effects on D if he undergoes a vasectomy without fully understanding it? What additional measures could support or enhance D’s understanding of the procedure and assent to it? What more should clinical ethicists do to help identify implicit and explicit biases against individuals with disabilities in the health care system, and what steps can they take to mitigate these biases, especially in decisions involving potentially irreversible procedures like sterilization?

–Adira Hulkower and Devan Stahl

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