Often the ophthalmologist or optometrist is the first person who comes into contact with the patient who is visually impaired. While an accurate diagnosis may be made and treatment options explored, most severe visual impairment is not curable. An old saying states: "Whatever can't be cured can be endured." Having knowledge of issues of concern to the patient and/or family and sources of information and support is vital to providing the highest quality of care and helping them to endure what cannot be cured.
This article introduces ophthalmologists, optometrists, and other eye care professionals to the issues patients and families are most often concerned about and vital resources on and offline. The term "patient" will be used to refer to the person with a visual impairment as well as his/her family for the sake of brevity.
Although blindness is not something most families anticipate or look forward to, most would prefer an honest and compassionate statement of the reality of the patient's condition. Explaining that the term "blind" does not always mean that the patient will live in total darkness may ease the emotional blow of the diagnosis; however, what is more important is to assure the patient that blindness does not equal helplessness. Blindness means only that changes will need to be made in the method used to accomplish everyday tasks. Blind people are as intelligent as their sighted peers unless affected by another disability which results in intellectual problems. They are capable of attending school with sighted students; living independently; caring for children; holding down a job; and, most importantly, understanding the reality and implications of their eye condition. They desire and deserve to be treated with the same respect with which other patients are treated.
In order to understand the cause of their visual impairment, patients need some basic information about how the eye works and what parts of their eyes are damaged. Some may be able to view a diagram of the eye. Others may benefit from exploring a tactile model. They will need to know not only what the parts of the eye do but also what happens when those parts are damaged and what treatment of the damage will mean. For example, patients with optic nerve damage sometimes report that things appear gray or unclear. Patients with cataracts or corneal damage may feel that they are looking through a film and may experience difficulty with glare.
When discussing treatment options, it is generally best to stick to what is possible at the present time. Promises of technological advances in artificial vision may seem comforting, but they do not change the fact that right now the patient is blind and that blindness must be lived with and accepted. If treatments are available at the time of the patient's visit with you, the patient must be fully informed about the cost, insurance coverage, risks and benefits, and what is involved in the recovery period. Insurance companies may not cover treatment for the entire period of recovery. For example, I was required to see the corneal specialist for two years following a transplant, but only three months of follow-up care was included in the bill from the hospital. The bill which came after the third month was quite a surprise. Making decisions about surgery is a stressful process which is made much easier by having information which allows for budgeting.
Visual outcomes are one of the primary concerns of patients with low vision. Naturally, both you and they want to maximize the amount of vision available. Patients must understand that treatment may not result in perfect or even near-perfect vision. The same holds true for prescriptive lenses. Many patients ask what they will be able to see while wearing a lens with a certain refractive power. They do not understand that correcting refractive error does not always result in clear vision. This is why an understanding of the implications of the damage caused by the eye condition and the purposes of treatment is vital.
Understand that even a small amount of vision may be useful to the patient, even if it cannot be measured accurately in the office. Lighting becomes a crucial factor in the usefulness of very small amounts of vision, and many patients feel that the lighting in ophthalmologists' and optometrists' offices is inadequate for them. The true test of the usefulness of a patient's vision is what he uses it for on a regular basis. Losing that vision may be as upsetting for him emotionally as it would be for a person with normal vision. Treatments whose risks seem greater than their potential benefits might be worth exploring, especially if the patient will lose the vision without treatment.
It is important to recognize that a patient who has the ability to read the eye chart may or may not have the ability to read for long periods of time without experiencing fatigue or eye strain. Likewise, low vision can present significant challenges to safe travel. Inability to read signs may cause problems with orientation; restricted visual fields may cause a person to be unable to avoid objects outside his lind of vision; differences in the acuities of the two eyes may cause problems with depth perception. Orientation and mobility instruction is vital for people with these needs. Some doctors believe that safe travel without a cane is possible for people whose vision is fairly good; it is unwise to assume this is true. If a patient has a condition which is known to cause a degree of visual impairment, he should be referred to an appropriate agency for evaluation for services based on how he uses his vision. The patient may need low vision aids or instruction in braille, orientation and mobility, and other important alternative techniques.
Naturally, you cannot provide the answers to all of the patient's questions about blindness. Some of the issues they face will be outside your area of expertise and/or experience. In these cases, a good knowledge of other available resources will be of great benefit to both you and them. Following are some ways to learn about informational and support resources.
You as the eye care professional have a great influence on your patients. Your attitude and service can lead them to independence and self-confidence. By helping them to endure, you are doing as much as if you had cured the cause of their blindness.
This document is copyright 2003 by Sarah J. Blake. For permission to reprint, please email Sarah at sarah@growingstrong.org.
Sarah J. Blake is a person with a visual impairment who has also studied blindness and eye conditions. She is not an eye care professional, and information on this site is not a substitute for face-to-face consultation with an eye care professional. This site is designed solely to assist patients and doctors in building cooperative relationships.
Do you need more information about providing effective services to your clients who are visually impaired? Visit Sarah Blake's services page to find out how she can help.
This site is graciously hosted by LinuxPowered.