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Gynecologic Care of Women with Developmental Disabilities and Other Special
Needs
David Blair Toub, M.D.1, and James W. Nettleton, M.D.,
Ph.D.2
From the Department of Obstetrics and Gynecology,
Pennsylvania Hospital, Philadelphia, Pennsylvania1, and the Department of Medicine,
Presbyterian Medical Center, Philadelphia, Pennsylvania2
Reprint Requests:
David Blair Toub, M.D.
Department of Obstetrics and Gynecology
Pennsylvania Hospital
800 Spruce Street
Philadelphia, Pennsylvania 19107
Abstract:
Women with developmental disabilities and other special needs represent an underserved patient population. Gynecologists frequently have little or no specific training to address the needs of these patients, who may require additional time and resources than the "average" patient. With appropriate preparation and understanding, the majority of women with special needs can receive the same quality health care to which all female patients are entitled.
We address specific issues relating to informed consent, the use of sedation to permit a pelvic exam, and appropriate use of operating room facilities. The care of women with special needs is an opportunity to make a difference in the lives of women who may sometimes be excluded from mainstream medicine
Introduction:
Women with special healthcare needs represent an underserved population. All patients have some unique "special need" that requires compassion and understanding by their ob/gyn provider. For example, a victim of sexual abuse requires a different approach than a woman undergoing treatment for a normal pregnancy. However, when most people speak of a female population with "special needs," they are referring to the millions of women nationwide with some form of developmental and/or mental disability, and this is how the term is used for the purposes of this paper. While many of these patients may or may not require more resources than the "average" patient, they are entitled to the same high-quality medical care as everyone else.
In the city of Philadelphia, for example, over 11,000 people received support services for mental retardation during 1995. Approximately 1500 live in agency-run residential settings. At least 40.7% of this population with mental disabilities in the city were women. Given the existence of waiting lists and people living at home with family members, this is likely a conservative estimate. There are also significant additional numbers of women with physical and other disabilities. While these women present a special challenge to ob/gyn providers, caring for them is also a unique opportunity to make a difference in the lives of women who may sometimes be excluded from mainstream medicine.
Women with disabilities potentially face a number of barriers when they seek obstetric and gynecologic care. Besides physical obstacles such as handicapped-inaccessible entrances and bathrooms, they may need assistance, for example, to climb onto an exam table. Women with psychiatric or developmental impairments initially may offer resistance to the examination. Many adult women with developmental disabilities have been sexually abused and will bring that history to the gynecologic exam. This may require that patients receive sedation or be placed under anesthesia for a basic examination. Some of these patients are unable to furnish a useful medical history, so that important information may not be available to their physician. Common assumptions and misconceptions on the part of healthcare practitioners may also act as a barrier to quality care. For example, screening for sexually transmitted diseases may not be offered to the patient because of the mistaken belief that women with "special needs" are not sexually active. Obstetrics and gynecology training programs do not often prepare residents to provide services to women with developmental and other disabilities. Many disabled patients are frequently seen in residency clinics. Thus, the need to sensitize residents to issues involved in the care of these women becomes even more of a necessity.
Routine Gynecologic Care:
All women require some form of well-woman care at least yearly. This includes a thorough ob/gyn history, a basic pelvic exam and Pap smear. Many women will need cervical cultures, endometrial sampling, mammography and other diagnostic tests. The "special needs" population is no less prone to gynecologic problems, but obtaining complete medical care may be complicated. If a woman is resistant to having an exam, there are several approaches one might take. The main ingredient for success is patience. By gradually introducing the exam table and equipment, the patient’s apprehensions often are removed and, while this may take more than one visit, can result in the patient cooperating with a successful pelvic exam. Identifying and offering behaviors rewarding to the individual woman can be the key to a completed gynecologic exam and can alleviate some of the fear felt by the patient. These might include having a trusted caregiver hold her hand and talking her through the examination, and even small gifts such as candy or some other present or privilege. If the patient continuously is unable to be examined, some light sedative may prove helpful. Oral agents commonly employed include diazepam, ativan and benadryl. Because these drugs may be administered frequently to some patients by their caregivers, they may have some degree of tolerance and require higher doses of these sedative agents to be effective.
Operating Room Issues - Consent and Anesthesia:
On occasion, there will be the exceptional patient who is unable to tolerate an exam without anesthesia. This modality generally should be used only when all other methods of securing a gynecologic exam have failed. Additional patients may also require IV sedation or general inhalational anesthesia for colposcopy, cone biopsies and other procedures. It is important to determine if the patient herself is able to give informed consent for any procedure. If not, one must attempt to identify a legal guardian. The care giving agency responsible for the patient often will be able to provide this information. If the patient is being scheduled for an operating room procedure, consent for anesthesia can be obtained at the same time as the operative consent. If pre-admission testing is not essential for the nature of the procedure (such as an exam under anesthesia), it may be waived depending on the patient’s medical condition and medication list. Communication with the anesthesia department is helpful to clarify these issues. At times, patients who require anesthesia to undergo a pelvic exam may be unwilling to undergo phlebotomy, and if there are no medical indications for blood testing, it will facilitate the pre-admission process if such testing can be avoided. The pre-admitting, anesthesia, operating room and recovery room staffs should be apprised of the patient’s "special needs" so that they are sensitive to the fact that the patient may require some additional emotional and physical support. As the surgical suite is often an intimidating and even frightening place for many patients, surgical masks should be avoided while the patient is awake unless absolutely necessary. If possible, a support person should accompany the patient to the operating room. While it is obviously important that the preoperative patient not eat before having anesthesia, many anesthesiologists permit patients to drink water and take their regular medications on the morning of the procedure. If a patient is on psychotropic medications, they may decompensate en route to the operating room if these are not taken. If a patient physically or verbally refuses to allow an IV to be placed or to receive any sort of sedative medication, under no circumstance should that patient be held down to receive medication. Rather, the procedure should be rescheduled and the newly-identified issues and concerns should be addressed by the agency support staff during the interim.
After performing any examination or procedure on patients with "special needs," results must be communicated to them along with their caregivers just as with any other patient. Follow-up is essential. A major question is how often an exam under anesthesia should be done in a patient with "special needs" who has normal cervical cytology. This remains largely unanswered. While there are advocates for screening patients every 2-3 years if they have had several normal smears in a row, there are other benefits from yearly pelvic exams, such as ovarian cancer screening and detection of sexually transmitted diseases. It is possible that people with developmental disabilities, if they have never been sexually active, may be at lower risk for cervical dysplasia since they would be expected to be less likely to harbor the human papillomavirus. However, one cannot assume that the population with developmental and mental disabilities is not sexually active nor victimized by sexual abuse. At the same time, there are risks to subjecting a patient to general anesthesia or IV sedation year after year, as well as cost concerns. Until the risk of cervical dysplasia in such women is known to be significantly less than the general population, one must err on the side of yearly screening for the majority of women. A recent study1 of 574 mentally-impaired women noted a 68% frequency of inadequate Pap smears, many of which were taken without use of a speculum. While the incidence of cervical dysplasia was 0%, this may relate to inadequate sampling methods.
Additional Concerns:
Given the risks and monetary expense of anesthesia, it should be used only if absolutely necessary. However, when evaluating an abnormal Pap smear, patient cooperation is essential to perform an adequate colposcopic examination. It is not uncommon to have to resort to some form of general sedation or even endotracheal intubation to work-up an abnormal smear with colposcopy. The problem comes when a patient with "special needs" is referred for colposcopy when the smear would not normally mandate colposcopy. For example, many community living arrangements require that a Pap smear be absolutely "within normal limits" to be considered normal. This leads to many women being referred for colposcopy when they have reactive smears or ASCUS ("atypical squamous cells of undetermined significance"). The vast majority will prove to be free of dysplasia at the time of colposcopy. It is important for the gynecologist to communicate with the patient and referring caregiver to discuss these requirements, since they lead to many unnecessary interventions including general anesthesia. A corollary to this is that hysterectomy is never indicated to obviate future pelvic exams or colposcopies under anesthesia.
The practitioner must be patient and work to elicit any possible complaints such as postmenopausal bleeding or urinary incontinence. The person with developmental disabilities may not always report such problems to their caregivers since it may bring on feelings of embarrassment. Reassurance should always be given that it is good to discuss these issues with nurses and physicians, since they need to be evaluated and treated. Ultrasound may be used if the patient refuses an office biopsy or hysteroscopy, since in postmenopausal women, and endometrial stripe thickness less than or equal to 5 mm reliably predicts a benign histology2,3. Of course, if endometrial pathology is suspected based on an ultrasound, the patient should be encouraged to proceed with a biopsy or D+C. Ultrasound may also help when the practitioner cannot perform a thorough pelvic exam in the office setting.
Patient autonomy must always be respected, as with any other patient. Sterilization is one particular setting in which conflicts may arise between the patient and her family or guardian. There often arise situations in which a parent or caretaker has brought a woman with special needs to schedule a tubal ligation or hysterectomy when the patient herself does not desire sterilization. Parents may feel that they are acting in their children’s best interests. However, unless the patient is legally incompetent and there is a compelling medical reason to perform the surgery, the physician should act as a patient advocate and not perform a procedure for which their patient does not give consent.
Above all, the patient with "special needs" should be addressed directly, even with a support person in the same room. The purpose of the support person is to assist the patient and fill in gaps in the history. It is essential that the support person come with all necessary records. When the support person is not familiar with the patient, it makes both the interview and examination more difficult.
Final Thoughts:
Providing gynecologic and obstetric care to women with developmental and mental disabilities is both challenging and rewarding. There are certain implications for the delivery of well-woman care as well as specialized ob/gyn services. Respect for the patient’s autonomy and right to quality health care is essential, as is communication between caregivers. It is not difficult to "mainstream" patients with "special needs" into any practice setting. With the proper skills and patience, the need to place a patient under anesthesia to perform a routine examination should be uncommon.
- Quint EH, Elkins TE: Cervical cytology in women with mental retardation. Obstet Gynecol 89:123-126, 1997
- Goldstein SR, Nachtingal M, Snyder JR, et al: Endometrial assessment by vaginal ultrasonography before endometrial sampling in patients with postmenopausal bleeding. Am J Obstet Gynecol 163:119-123, 1990
- Goldstein SR: Unusual ultrasonographic appearance of the uterus in patients receiving tamoxifen. Am J Obstet Gynecol 170:447-451, 1994
