Anna Demopulos '22 majored in Biology with minors in Philosophy and Public Health and is a 2021-22 Hackworth Fellow at the Markkula Center for Applied Ethics. Views are her own.
How are female patients with autism assessed by physicians for capacity in medical decision-making regarding sexual and reproductive healthcare?
"As an older sister to a sibling with autism and a student desiring to enter the medical field, I have developed an academic passion for bioethics and disability. As a result, my Hackworth Fellowship is an exploration of how female patients with autism are assessed by physicians for capacity in medical decision-making regarding sexual and reproductive healthcare. With the guidance of my mentor, Dr. Charles Binkley, I created a theoretical case study involving Sarah, a 29-year-old woman with moderate autism, reaching out to her physician with a desire to have a baby. I shared this case study with thirteen practicing physicians in semi-structured interviews and assessed their responses with a rubric. This has been an invaluable learning experience, many thanks to the Markkula Center!" ~Anna Demopulos ’22
Assessing patients’ capacity to make medical decisions for themselves is fundamental to informed consent and expresses respect for autonomy. While competence is determined by the courts, capacity assessments fall on the shoulders of healthcare providers. Capacity assessments boil down to four key elements: understanding, appreciation, reasoning, and communication. In many cases, capacity is easily assessed. However, the assessment of whether a patient has the intellectual capacity to make their own medical decisions is not always performed consistently, and the conclusion of such assessments is not always obvious. Some patients and circumstances present an unclear picture of capacity. The presence of neurodivergence in patients can complicate capacity assessments, whether the cause be true capacity impairments, social stigma, or lack of established criteria. While there are many patients with impaired capacity that go undetected, on the opposite end, there are also many patients who are inappropriately and unfairly assumed to lack capacity due to diagnosed neurodivergence. Capacity is uniquely difficult to measure, as it is largely dependent on factors relative to each individual and situation. The subjective nature of capacity assessments and lack of consistent criteria make space for misjudgements and discrimination.
Healthcare disparities commonly place serious burdens On members of the disability community in the United States. Adults with developmental and intellectual disabilities, particularly women, are commonly assumed to lack capacity to make medical decisions which greatly affects the clinical care they receive. In the context of sexual and reproductive healthcare, many women with disabilities lack access to adequate and equitable care. The historic sterilization of women with intellectual disabilities and oppression of the disability community has undermined the U.S healthcare system’s current ability to effectively care for women with neurodivergence. Women with intellectual disabilities regularly face assumptions of asexuality, dependence, and childishness. The objective of this research paper is to evaluate how adult, female patients with autism are assessed by physicians for capacity in sexual and reproductive medical decisions.
Read Anna's full paper, "Assessing Decision-Making Capacity for Female Patients with Autism".
View the video of Anna's project presentation.
About Anna Demopulos
"Anna Demopulos '22 majored in Biology with minors in Philosophy and Public Health. Although she is from Mercer Island, Washington, she would choose sunny Santa Clara over Seattle rain any day. In her free time, she enjoys spending time with family and friends at the beach, hiking, and learning to cook. With plans to attend medical school and pursue a career in pediatrics, she wants to explore paths to building a more equitable, inclusive and effective healthcare system.
As an older sibling to a brother with autism, she has also fostered a passion for disability ethics and advocacy. Influenced by the stigmatization and hardships her brother has faced, she researched bioethics issues regarding disability and promoted changes that can be implemented in healthcare settings. Through the combination of sharing research and personal narratives, she hoped to produce a multi-dimensional project that fosters a more beneficial healthcare experience for members of the disability community.