Contraceptive Pearl: Practices of Consent and Autonomy for Patients with Disabilities, Part 2
Written by Maddie Fowler, Spark Dariy, Amy Stone
Last month’s Pearl discussed key practices of consent. Here, we share unique considerations for those with physical disabilities, intellectual and developmental disabilities (IDD) or cognitive impairment, non-speaking patients, and deaf patients.
Physical Disability
People with physical disabilities may require additional assistance during the exam. Without making assumptions, ask the patient beforehand if they will need any assistance with accessibility during the visit. Some patients may need assistance getting on and off an exam table, changing clothes, or cleaning up after the exam. It’s best to make these questions standard practice and ask all patients at the start of their visit. Some patients may also need help from one or more people to get into position and hold their body in place. In these situations, allow the patient choice in who will assist them, understanding that each additional person present affects their privacy. Being held in position may also cause physical discomfort, so taking breaks may be needed. Additional consent discussions will be required with all people involved, so everyone understands how the appointment will go and that the patient may revoke their consent at any time. Finally, remember that function and feeling are not equivalent, and many people with physical disabilities may experience frequent pain or be hyper-sensitive to pain in the areas affected by their disability.
IDD and Cognitive Impairment
To preserve the autonomy of all patients, it is imperative to assume competence. For patients with and without IDD, speak directly to the patient rather than asking questions to a caregiver/care partner or support person, unless the patient gives an explicit request otherwise. Use plain language to explain the procedures. Utilizing engaging tools, diagrams, and 3D models may be even more helpful for this population.² Ensure the patient understands the procedure by asking them to summarize the information shared or asking comprehension questions to assess their understanding of the appointment and purpose, and voluntariness of participation. Example questions include: “Could you repeat to me what we will be doing in the visit today?” or “What can you do if you would like to stop or take a break during the exam?” Repeat the explanation as many times as necessary before obtaining consent. In situations where patients have a legal guardian who makes medical-legal decisions for them, it is important to also obtain consent or assent from the patient in addition to their guardian.
Non-speaking Patients
Some patients may have a disability that limits speech, and as with all other patients, clinicians should assume competence. Adapt to the patient’s communication method and style, and focus conversation and questions on the patient directly rather than a caregiver/care partner. Become familiar with alternative communication methods and technologies, such as Augmentative and Alternative Communication (AAC), and remember that all forms of communication, verbal and non-verbal, are equally important. Provide the option for sign-language interpretation if the patient prefers. Clinicians should not default to the caregiver/care partner or support person for information if the patient is nonspeaking, unless given a specific request has been made by the patient. Establishing nonverbal cues for consent and when to stop or pause the exam will be especially important. Establish specific definitions for different physical or audible cues.
Deaf Patients
Provide the option for sign-language interpretation if the patient prefers. Some patients may prefer to read lips and may need you to face towards them while speaking. When using an in-person or tele-interpreter, ensure that the interpreter or tablet is placed near the patient’s head and not in view of the patient’s genitals or other body parts. Clinicians should also allow time for any delays in translation. If you communicate that you are about to insert a speculum, allow the translator time to relay this before inserting the speculum.
To learn more about inclusive practices in sexual health clinics, please explore the Inclusive Sexual Health Services: Practical Guidelines for Providers & Clinics tool. For sexual health education tools for people with disabilities, please reference the Healthy Understanding of Our Bodies resource hub. The Disability-inclusive Sexual Health Network also created a social story visual aid to guide patients through the pelvic exam procedure, amongst other resources.
RHAP resources:
Your Birth Control Choices Fact Sheet
Your Birth Control Choices Poster
Contraceptive Pearl: Alternative Positions for Pelvic Exams
Contraceptive Pearl: Practices of Consent and Autonomy for Patients with Disabilities, Part 1
Sources
Pharma-free
The Reproductive Health Access Project does not accept funding from pharmaceutical companies. We do not promote specific brands of medication or contraception. The information in the Contraceptive Pearls is unbiased, based on science alone.
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