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Chapter 2 - Assessment   Each woman with a developmental disability who comes to your office or clinic is unique. One patient may be quite comfortable with the gynecological exam procedure, while another patient's fear, anxiety or tension may make it impossible to complete the exam. There are many things a provider can do to help prepare a patient for the exam and make it a positive and educational experience. A. Assessing Accommodation Providers do not always know if a new patient has a disability. However, if you do know, it is important to talk to her to determine what accommodations, if any, she will need. To find out what aspects of a woman's disability are relevant to her visit, it may be helpful to ask, "Is there anything you think we might need to know about your disability?" It may be necessary to talk to a patient's care giver when you are assessing accommodation. If the patient can communicate ask for her permission to talk to the care giver or other third party. Before the appointment it is especially important to assess: The amount of time needed for the appointment The accessibility of the clinic, exam room, and equipment The need for assistants to aid in transferring and positioning The need to arrange for a sign language interpreter The assistive technology that the patient uses and how it will effect the exam process. To see a sample questionnaire on physical accessibility, refer to Appendix II. Disability Rights Advocates, a San Francisco Bay Area organization (see Appendix III), is currently preparing a guide on rights to accommodation for patients with disabilities. This publication will help health care providers better understand and meet accommodation needs. B. Preparing The Patient For The Exam Helping the Patient Prepare Herself When people have a sense of being in control, it is often easier for them to deal with an intimidating new experience. Appendix I provides a checklist that patients can fill out prior to their first visit. It is called "I Would Like To" and lists various ways that an exam might be made easier or more comfortable. It lists things the patient can do as well as things the provider can do. You can adapt this list to include the kinds of adaptations that your office or clinic can provide. You can review this with a patient on a day before the exam, or she can fill it out on her own or with the help of someone she trusts. Filling out this checklist will give the patient a feeling of better control over the impending new experience. Let the patient know what clothing will need to be removed and what kinds of paper work, physical actions/motions and lab tests will be required. Suggest that the she wear an easily removable skirt or pants and a button-up or loose shirt. If it is easier for her, let her bring a urine sample with her to the appointment. Orientation If the patient is apprehensive or lacks basic knowledge about the exam,education should ideally be provided before the day of the exam. Orientation can include: A discussion of the importance of the pelvic and breast exam for good health. An illustration of the exam procedure using pictures, models and/or videos. A description of clinic procedure (including intake, lab tests, etc.). A tour of the clinic and the equipment. If at all possible, an opportunity for the patient to role play the exam, using dolls or models (this allows the patient to fully express her fears and worries about the exam). Back to Contents C. Communication and Education All women feel better when they understand what is happening to them during the exam. This is especially important for women who have problems learning or communicating. Look at the patient, and talk directly to her, instead of talking about the patient to others (such as a relative, friend, attendant or interpreter). Use easy words and short sentences. Explain terminology, such as "vagina". Don't talk down to the patient respect individuality, experience, and age. Wait for answers; patients with disabilities that affect communication may take longer to put thoughts into words. If writing or reading is necessary, ask the patient if he or she would like some help. Use a variety of educational modalities, such as pictures and models as well as words and demonstrations. Simple line drawings, videos, pictures, anatomical dolls, rubber models of the genitals, plastic speculums help many patients understand better. Models of the penis or dildoes are helpful in teaching about intercourse or condom use. Make sure your patient understands the relationship of the model to the whole body. Use explanations such as, "If there were a window this is what you'd see." Assess understanding. Never ask simply, "Do you understand?" Instead, ask questions that elicit knowledge, such as "Can you tell me how babies are made?" Or "Can you point to the place in a picture where the blood comes out when a woman has her period?" Patients may lack basic knowledge of anatomy and human development because education wasn't provided or was not provided in the patient's first language or in an understandable way. Give honest information. Many people with developmental disabilities have been misinformed and lied to. Patients may not know that the exam is a private medical procedure. They should be assured that their privacy and the confidentiality of the exam will be honored. D. Reducing Stress and Anxiety The Benefits of Complementary Medicine Recently more and more health practitioners are finding that the many stress-reducing techniques of Complimentary Medicine are truly a "compliment" to their medical practices and exams, and actually make these exams more positive experiences for both the patient and the practitioner. Complementary, or alternative, medicine is an umbrella term for healing practices that encompass all aspects of the persona - mind, body and spirit. Holistic medicine is most effective when the patient is involved through the practice of self-help. The self-help techniques discussed here have been selected for their simplicity, ease of application and ability to relieve pain and discomfort. They are gentle and non-invasive alternatives to sedation, and can be used during the examination by almost everyone. You can invite your patient to participate in making the experience less stressful for both of you. We will introduce and briefly discuss acupressure, imagery and breath awareness. Practitioners may want to take the time to demonstrate and practice some of the techniques with the patient beforehand, as a few minutes preparation may ensure that the exam proceeds smoothly. Both imagery and breath awareness can be used in conjunction with acupressure. The techniques will complement each other. It is important not to assume that your patient can't do any of these things because of a disability. If one technique doesn't seem to work, consider trying another. Maybe you will find that the process can be relaxing and fun for you too. Back to Contents Acupressure Acupressure is the centuries-old practice of bringing harmony and balance to body mind and spirit by the use of gentle finger pressure at specific locations on the body. Chinese acupressure is the basis for the art and science of acupuncture. Light, sustained pressure with one or more fingers is sufficient. If pressure is uncomfortable, hard to sustain or contraindicated, simply contact the area with the palm of the hand or the fingers. Acupressure points are actually areas about the size of a quarter, so placing the hand in the general vicinity is sufficient. If the patient is unable to use her hands, she can imagine invisible fingers on the area, or just focus her attention there. A patient may also imagine a color that they like filling that space. The longer the point is held the better the results, so the patient can be encouraged to hold one or several points for the duration of the exam. The following pressure points come from Chinese medicine: Sea of Tranquility: For relaxation and relief from fear and anxiety; frees the breathing Location: On anterior median line at the level of the fourth intercostal space Joining the Valley: For pain relief, fainting Location: On the dorsal surface of the hand, in the angle between the proximal ends of the first and second metacarpal bones Middle of a Person: For muscle cramps and spasms, fainting and dizziness and pain relief Location: Between the upper lip and the nose. Inner Gate: For fear and anxiety, frees thoracic area Location: On the anterior surface of the forearm, between the tendons of the palmaris longus and the flexor carpi radialis Bigger Rushing: Alleviates over excitement and agitation, calming, pain relief Location: On the dorsal surface of the foot in the angle between the first and second metatarsal bones. Jin Shin Jyutsu This is a Japanese acupressure practice that uses the fingers and thumbs to aid in the release of pain, and emotional stress and tension. Each digit controls specific body functions and emotions, and simply holding them individually with the fingers of the other hand can calm and dissipate emotions such as fear, anger and anxiety. The fingers and thumbs can be held sequentially, or one can be chosen for a specific need. It is not necessary to hold all the fingers, or to treat both hands. Simply wrap the fingers of one hand around the chosen finger or thumb. For example, if the patient is fearful, suggest that they gently hold the right index finger with the fingers of the left hand. There is no time limit, so the chosen finger or thumb could be held for the duration of the exam. Back to Contents Imagery Imagery is a way of harnessing the power of the imagination to heal and transform. It can help to ease pain, calm the mind and redirect negative thinking. Everyone, regardless of ability, can access the power of the imagination. Researchers have found that the brain does not differentiate between a real or imaginary experience. If the brain registers a pleasing image, messages are transmitted to the emotional center and the autonomic nervous system, resulting in increased relaxation, lower blood pressure and a decrease in muscle tension. Visualization is the most common form of imagery, but for those who do not see mental pictures, engaging the other senses imaginatively -- touching, smelling, feeling and hearing to evoke images -- can be as powerful. Relaxation is an important first step in the process. Simple ways to facilitate relaxation that will open the mind to imagery could include introducing pleasing sights and sounds into the office environment. Practitioners might direct the patient to look at a beautiful picture, listen to relaxing music, or think about something pleasant. This may also provide a partial distraction from anxiety and fear. When a patient appears somewhat relaxed and receptive to suggestions, the practitioner can ask them to envision a favorite place. It can be somewhere familiar, or a place they've seen in a movie, or a book. It can also be entirely imaginary. You can make some suggestions, like the beach, a forest, a field, the mountains, their grandmother's kitchen, while using a few key words to encourage them. The only requirements are that it be peaceful and that they feel safe in their "imaginary place". If the patient is verbal, allow a few minutes for them to assemble the image and then ask them to describe what they perceive. You can then prompt them to go deeper into the chosen image by going there with them and suggesting that they smell a flower, or touch a tree, look at the sky, or listen to the sound of the wind or the waves. The image the patient develops can be very simple, smelling a flower or petting a kitten. It is important, however, to let them develop the imagery themselves as you are merely presenting some ideas. Imagery is most powerful if it is personally meaningful. It's a good idea to check in periodically to determine if the patient is able to retain the images, or needs to be reminded of where they were. The mind has a tendency to wander, whether or not you are a person with a disability! Nonverbal patients who cannot be interactive might require more cues to help them stay focused. You might direct them to look around again to see if anything has changed. Sharing the details with the patient of their "imaginary place" can be done while the exam is being preformed in order to reduce their awareness of any pain or discomfort. When the exam is finished, you can suggest that the patient remember the imagery and use it in other stressful situations. Deep Breathing Deep breathing is one of the most powerful tools we have for easing pain and reducing emotional stress and tension, though the common response to pain and stress is to restrict or hold the breath, thereby exacerbating the problem. Explaining the process and importance of deep breathing can be helpful in raising awareness and also provide a distraction from the unfamiliarity of the surroundings and the procedure. You can explain, for instance, that deep breathing helps to relax muscle tension and that they can imagine exhaling or releasing any pain or tension they experience. It may help to breathe together with a patient so she can model her breathing on yours. She could touch your chest and feel your breath go in and out. Nonverbal patients, and many others, may find this helps them avoid the confusion of a more intellectual approach. For people with cerebral palsy, it's counterproductive to ask them to take a deep breath, or to "relax." Since both breathing and relaxation are problematic for someone whose body doesn't always obey the mind, it tends to produce more tension and anxiety. Language that encourages relaxation might be an instruction to "just let go." You could use guided imagery techniques and suggest that they imagine smelling roses or fresh bread, the sea air, or another smell they find pleasing. Patients can also be instructed to "blow out the candles on a birthday cake"; or to fill up the two big balloons inside their chest. Many people also respond positively to colors, so they can imagine breathing in a favorite color and filling the whole body. Back to Contents Sedation Few patients request sedation for the pelvic exam. If a patient is anxious, suggest that she take an over-the-counter painkiller, such as Ibuprofen, before the appointment. Valium or stronger sedation should be used with caution and alternatives should be considered first. Alternatives to sedation include the complementary medicine techniques described above; education about the exam and its importance; counseling about the fears associated with the exam; and desensitization training, such as visiting the clinic and meeting the clinician ahead of time. Benefits of sedation: Sedation can help a woman go through a pelvic exam with less trauma by reducing pain and/or anxiety. It may help the woman lie still for the exam, and achieve and maintain the necessary positioning. Risks of sedation: There are risks and side effects associated with different kinds of sedation. In addition, there are always the risks of diminished awareness. When sedated, patients are less likely to understand what is happening to them or to make informed decisions. They are more vulnerable. There is a long history of people with disabilities, especially those with mental retardation or mental illness, being anesthetized and then sterilized without their consent. Many people with developmental disabilities have been abused by the misuse of sedation. This happens when sedation is used to manipulate a patient for the convenience of others. For example, when considering general anesthesia for a patient who is having difficulty with a pelvic exam, it is important to make sure that all less invasive options are considered, including education and behavioral interventions as well as the use of sonogram technology. Many people with disabilities, especially those with developmental and emotional disabilities, have been sedated or over-sedated without their consent and any caution they express may be a healthy reaction based on real experiences. This caution needs to be acknowledged and validated as appropriate self-care behavior. Responsibilities-Who should decide about sedation? The patient usually has the right to decide and should always be educated about her options. She should be able to choose among alternative sedations or to choose to remain as aware as possible during an exam. Remaining aware and alert will give her an opportunity to learn more about her body; she may have had few opportunities to learn about her body in a respectful and supportive setting. A limited conservator or the parent or guardian of a minor can give consent for sedation, but should consider the wishes and needs of the patient, and the patient must be involved in education and decisions to the best of her abilities. E. Gynecological Health Care and Informed Consent Few people with developmental disabilities have conservators. This means that most have the legal right to consent and must sign a consent form, if there is one. The patient's signature, even if it is an "X," is the accepted legal consent. Responsibilities of the health care provider regarding consent The fact that the patient does not have a conservator does not necessarily mean a patient can understand the clinical information to the provider's satisfaction. It means the patient's legal right to consent has not been formally limited. The provider must still assess each patient's ability to understand the information. The provider should try to educate the patient to give adequate consent. The provider should look for any indications that the patient is being pressured or coerced into health care decisions or has been sexually abused. The local Regional Center and the Clients' Rights Advocate at Protection and Advocacy (Appendix III) are resources in such situations. The provider has the legal responsibility to report any suspected abuse to the authorities. Back to Contents Responsibilities of guardians and conservators regarding consent A guardian is appointed by the court to give substitute consent for a minor. A conservator is appointed by the court to give substitute consent for an adult. A limited conservator may give substitute consent for a person with a developmental disability, but only in designated areas (e.g. a Conservator of Person may consent for health care while an educational or financial conservator may not). Conservators and guardians, like the parents of a minor, do not have unlimited rights. They must consider the wishes of the conservatee. In certain situations, the Regional Center can provide written substitute consent for its clients. The signature of the closest living relative may have some legal standing, but it should not be accepted unless there is a prevailing reason to do so. Resources: If a provider has questions or concerns about a patient's ability or right to give informed consent, helpful resources include Protection and Advocacy and the local Regional Center. See Appendix III.

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