AMA Journal of Ethics^®

Dr. Smith, a family medicine physician, is preparing for a full day of patient appointments. She is looking over the chart of Stephanie, a new patient, who is here for an annual physical. Stephanie is 30 years old and has autism. Dr. Smith notices that Stephanie has had regular uneventful periods but has never had a pap smear. Dr. Smith knows that pap smears are recommended for all women starting at the age of 21, so she makes a mental note to ask specifically about any previous pap smears and enters the room to meet Stephanie, who is sitting quietly in the corner, looking intently at one of the pictures hanging on the wall. Dr. Smith first introduces herself by saying, “Hi Stephanie, my name is Dr. Smith, but you can call me Julie. Nice to meet you.” Stephanie looks up and nods but does not say anything. Dr. Smith introduces herself to Stephanie’s caseworker, Hannah, then turns back to Stephanie and asks, “Tell me how you have been doing over the past year, Stephanie.”

Stephanie waves her hand, expressing “so-so,” and Hannah explains, “She’s nonverbal, but you can ask me any questions you need to know. I have her whole file and know her well.” As the conversation progresses, Dr. Smith learns that Stephanie has lived in a group home for about 15 years. She struggles with some behavioral problems at the home and has difficulty communicating her needs to the staff.

Dr. Smith remarks, “I notice that Stephanie has never had a pap smear before, at least according to our records. I wanted to check and make sure that information is accurate, since we would typically recommend this important screening for a patient of her age.”

Hannah responds, “Yes, that is correct. It has been discussed in the past, but we have always been concerned that a pap smear would be too distressing for her. Stephanie is very sensitive to sensory stimuli, especially anything painful. She’s required to get a flu shot every year to live in the group home, and it’s always so awful for her. I am not sure that a pap would be worth her distress, especially because she is not sexually active.”

Dr. Smith wonders if this is true. She asks, “Have there ever been any concerns about sexual abuse with Stephanie?”

Hannah answers, “Certainly not since she has been in the group home. She is very well supervised, and we have never had any problems with abuse among our staff. But we have very little information about her life prior to coming to the group home. She does not have any family involved in her care at this time.”

Dr. Smith replies, “Screening recommendations are indeed recommendations and not requirements, so I am open to discussion about the pap smear for Stephanie. However, given her unclear history I am inclined to err on the side of doing one. There is a high rate of sexual abuse in patients with intellectual disabilities. Since we do not know much about her previous history, I would rather be safe than sorry.”

Hannah sighs and says, “Well, Stephanie has dental work done under sedation every year, so perhaps she could just have her pap smear done at the same time. She wouldn’t even have to know it was done. We have done it before with some of the other residents, and it was a great solution.”

Dr. Smith considers Hannah’s suggestion, but she feels uncomfortable performing such an invasive procedure if it can only be done by deceiving the patient and by using a sedative as a chemical restraint. Dr. Smith feels that doing a vaginal exam and cervical test without Stephanie’s knowledge or consent to be more ethically problematic than doing a routine dental exam. She worries that performing the pap without permission of a sedated patient borders morally on rape. Even though Hannah is Stephanie’s official decision maker, Dr. Smith wonders whether it is ethical to leave Stephanie out of the decision entirely.

Commentary 1

Informed consent is a cornerstone of medicine and ethics and is generally regarded as a foundational expression of a clinician’s respect for a patient’s autonomy. No procedure can legally or ethically be performed without consent. However, consent decisions for patients with intellectual disabilities are typically legally assigned to a surrogate, usually a relative or caregiver. In Stephanie’s situation, the case suggests that her autism is so disabling that she does not have decision-making capacity and so cannot give informed consent. It is assumed, therefore, that she also does not have the capacity to give an informed refusal. From a legal perspective, she can neither consent nor refuse. But what about from an ethics perspective?

The case suggests that Stephanie gets dental care under sedation, and that consent for this is given by Hannah. Should it be any different for a pelvic exam and pap test? What are ethically relevant considerations when deliberating about how we ought to regard consent, assent, or refusals for patients with intellectual disabilities? The rest of this article considers these questions.

Justifiability of Restraint

Even though patients with severe developmental disabilities can require restraining for activities of daily living such as meals, medications, shots, and bedtime, and even when consent has been legally obtained from a surrogate decision maker who endorses these reasons for physical restraint of a patient, we suggest that there are good reasons to question whether physical restraint is appropriate to facilitate a pelvic exam for Stephanie. We argue in what follows that the use of physical restraint is inappropriate in this case. Additionally, we argue that there should be no exceptions to respecting the refusal of a person with intellectual disabilities to undergo an invasive exam if physical restraint is required to carry out the exam, even if the patient’s surrogate authorizes the use of physical restraint.

The use of anesthesia, is, however, ethically acceptable in our view. It is acceptable to do a pelvic exam at the same time as Stephanie’s dental work. Stephanie might resist having an intravenous needle for anesthesia and consequently may need to be physically restrained by the arm for this procedure, but, in our experience, most caregivers would feel that the surrogate’s legal consent to physically restraint a patient for insertion of an intravenous needle for the purpose of anesthesia administration is appropriate, if it is absolutely necessary to facilitate an important procedure or treatment.

Distinguishing a Pelvic Exam from Dental Work

Restraining Stephanie for a pelvic exam is different from restraining her to facilitate the dental work. Dr. Smith has concerns that performing a pap without Stephanie’s permission might constitute rape. But, if a clinician has legal consent and either anesthetizes or gains the cooperation of the patient, it certainly would not be rape. The pap test not only detects cancer of the cervix, but can also detect precancerous conditions that are 100 percent curable if treated early. When appropriately performed, a pelvic exam and pap test do not incur physical trauma. With an anesthetized patient there’s no reason to expect that a patient would be physically or mentally traumatized. Additionally, there are significant benefits, including screening for sexual abuse that would not be discovered any other way. However, if, as a clinician, you still feel the procedure performed under anesthesia would in any way cause a degree of trauma similar to that caused by rape, then you ought absolutely not to do the procedure.

Dr. Smith considers not even doing a pap test. This brings up the question of what kind of reproductive health care should be given to a woman with an intellectual disability. Some suggest that the answer is the same carethat would be given to a person without a disability. So, if women with a disability should have the same reproductive health care as women without a disability, this means that, like care for other patients, a decision to do something should be based on whether the patient needs it and after deliberating collectively on the balance of risks and benefits involved.

There are cases in which one should consider the patient’s refusal of an indicated procedure, even though the patient does not have capacity to refuse appropriate care. This again requires evaluating the risks and benefits of the procedure in context [1].

Assumptions about the Sexual Lives of People with Intellectual Disabilities

So does Stephanie need a pap test? Clinicians might assume that patients with disabilities have low rates of sexual activity, and therefore that a pap smear is not indicated [2]. This is a myth; there is a significant rate of sexual activity, as well as sexually transmitted infections, among women with disabilities. Although it does not specify whether sexual contact is consensual, the National Study of Women with Physical Disabilities found that 94 percent of respondents were sexually active, with sexually transmitted infection rates the same as in women with no disabilities [3]. Although women who have never been sexually active are at low risk of cervical cancer and abnormalities on a pap test, to assume a particular woman with a disability is in that category does not take into account the high rate of sexual abuse, which is more commonly experienced by women with disabilities than women in the general population. One literature review found that people with developmental disabilities were 4 to 10 times more likely to be victims of violence and/or sexual assault [4].

Sexual abuse can also be difficult to detect. Women with intellectual disabilities might lack the verbal skills to report abuse [5] and are more likely than women without disabilities to experience abuse at the hands of someone we assume can be trusted, such as attendants, caregivers, and even health care professionals (M.A. Nosek, PhD, unpublished data, 2003). While Stephanie’s caregiver does not suspect that Stephanie has ever suffered sexual abuse, it is still a possibility, and therefore it is the responsibility of the physician to consider and screen for it.

And how ought we to determine whether the benefits of the pap smear balance or outweigh the risks? Guidelines recommend pap tests on all women ages 21 to 65 who have a cervix [6]. At age 21, Stephanie would not be due for another pap for three years. Should Stephanie be given anesthesia for an annual pelvic exam when she is not due for a pap? The American College of Obstetricians and Gynecologists (ACOG) recommends annual gynecologic exams whether or not a pap test is due [7]. ACOG does not specifically address this issue in women with disabilities or those without decision-making capacity. The organization does not clarify whether and when these recommendations would change for a patient who is assessed as needing anesthesia to undergo the exam. However, given the additional risks of anesthesia, we would not recommend doing yearly pelvic exams for an asymptomatic woman who needs anesthesia for her exams. Instead, we would recommend only doing a pelvic exam when the patient is due for a pap test, since the potential benefits might not outweigh the risks in these cases. We recommend reviewing the benefit/risk ratio on a case-by-case basis.

However, it is important to make sure that this recommendation does not lead to underscreening of cervical cancer for women with intellectual disabilities. In the past, physicians have underscreened: overall, women with intellectual disabilities receive poorer-quality general health care and have significantly lower rates of screening for cervical cancer than women without intellectual disabilities [2]. Yet, screening has become more important than ever, and there is a national movement to improve screening practices in this population [8]. People with intellectual and physical disabilities are now living longer lives than they once did [9], and intellectual disability might have only a minor impact on a person’s longevity [9, 10].

Instead of forgoing screening, clinicians need to find ways to make care more accessible and acceptable for those with disabilities. For example, in this case, one possible alternative, particularly for patients whose disability does not substantially compromise their manual dexterity, is a “self-collected” cervical sample performed by the patient or a trusted caregiver [11]. Given her sensitivity to physical stimuli, it’s not clear whether self-collection would be an option for Stephanie, but we offer it as an option that might be suitable for some patients.

We would like to clarify here that anesthesia can describe relieving pain, discomfort, and anxiety, and does not necessitate unconsciousness that might be inferred from the term sedation. Regardless of whether Dr. Smith decides to give Stephanie a pap smear under anesthesia or obtain a sample some other way, maintaining a respectful environment for the patient—through strategies such as explaining the procedure beforehand with words or pictures in a manner appropriate to the patient’s health literacy level, having the patient tell the clinician when she is ready for him to begin, and honoring her requests to stop or pause—is paramount [12], as is preventing Stephanie’s experience from being negative or frightening. Additional strategies for doing so include having a trusted caregiver present and reducing the anxiety-provoking effect of stimuli by introducing equipment and people during a preprocedure visit. Implementing these strategies would require the physician explicitly to clarify that his conduct is therapeutic and neither intentionally sexual nor abusive. Clinical language used by the physician should explain the examination processes thoroughly. Counseling done by people experienced in working with patients with intellectual disabilities might also help Stephanie through an examination.