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.
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
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
- The amount of time needed for the appointment
- The accessibility of the clinic, exam room,
- The need for assistants to aid in transferring
- 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.
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
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.
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
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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
- 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
- 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.
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
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
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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
Sea of Tranquility:
For relaxation and relief from fear and anxiety; frees the breathing
On anterior median line at the level
of the fourth intercostal space
Joining the Valley:
For pain relief, fainting
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
Between the upper lip and the nose.
For fear and anxiety, frees thoracic area
On the anterior surface of the forearm, between the tendons of
the palmaris longus and the flexor carpi radialis
Alleviates over excitement and agitation, calming, pain relief
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.
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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
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 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.
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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
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
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.
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
Responsibilities of the health care provider
- 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 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.
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Responsibilities of guardians and conservators
- 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
- 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.
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