The key word in the opening sentence is “people.” It is always possible to help the person. In every situation, including these in which a patient has far-advanced visual loss, we must focus on the person, not the visual acuity. How best to help is based on the answers to these questions:
• Who is the patient?
• What are the specific aspects regarding the patient’s illness and visual problems?
• What are the patient’s needs and wants?
• Which of these are attainable and/or the most important?
In the following cases, we’ll look at four people who have or may experience significant vision loss, and some options that ophthalmologist might consider in helping them cope.
A 90-year-old woman in excellent health owns a farm. She wants very much to continue to work the farm as long as she can.
Her vision is hand movements with accurate projection of light in the right eye and 20/40 in the left, with advanced field loss. She is phakic. The goal is to preserve as much vision as possible in the left eye, and to preserve as much field as possible in the right eye.
Because she is in good health without major medical problems, we expect her to live five to 10 more years. Her pressures must be low enough to prevent further deterioration. In the right eye this can be best accomplished with trabeculectomy and mitomycin-C with cataract extraction. “Wipeout” is not a concern. In the left eye, wipeout is a concern, but maximum lowering of pressure is also a goal. She should use drops along with laser trabeculoplasty and cataract extraction. If it cannot be lowered to a goal in the low teens, she and we must monitor her visual ability closely. If it is getting worse due to glaucoma, not another problem (dry eye, macular degeneration, posterior capsular opacification, etc.), then she should have a tube shunt procedure.
A 75-year-old man has had a heart attack, smokes and is morbidly obese. He has bare light perception in his right eye with inaccurate projection. The pseudophakic left eye has advanced field loss that cuts close to fixation, resulting in 20/40 vision.
A 75-year-old runner is in excellent health. She has a slow heartbeat and low blood pressure, but far-advanced damage in both eyes. Her vision is 20/30 in each eye. The right eye has advanced field loss with about five degrees of field remaining, in the left eye it comes to within two degrees of fixation.
The goal here is to prevent any visual field loss whatsoever, as she will likely live 15 to 20 more years, as opposed to the patient in case #2. Thus, here the risks of filtering surgery would be warranted. This should be done in the right eye first to see how the patient responds to surgery.
A 56-year-old man is in fair health, though is overweight and smokes cigarettes. His right eye has inaccurate light perception and a pressure of 28 mmHg on no treatment. The vision in the pseudophakic left eye is 20/40 due to mild macular degeneration and intraocular pressure is 32 mmHg with moderate field loss. No treatment is needed for the right eye in which there is no useful vision.
The patient has little understanding of his condition, but it is worth trying a course of topical medications. After several visits and discussions about his disease, he returns again, not having used his medications, with pressure of 30 mmHg in the right and 28 mmHg in the left. Given his demonstrated non-adherence, he must be scheduled for a tube shunt procedure in the left eye immediately. Trabeculectomy is likely too risky in a patient who is non-compliant. No treatment is needed for the right eye.
Each individual is addressed differently. The question we should always be asking ourselves is, “How can I help this person?” It often relates to the level of vision. When the person has inaccurate light projection, the vision is likely not useful. It is usually not beneficial to treat such an eye.
Sometimes, lowering the pressure of an eye without useful vision may prevent bullous keratopathy or vein occlusion. However, medications should not cause any troublesome symptoms. Surgery should be a last resort, as the risk of sympathetic ophthalmia—no matter how small—is often too great to justify a presumed benefit of lowering pressure. Topical atropine and steroids may help, as would retrobulbar chlorpromazine. The definitive treatment is enucleation, which can be wonderfully liberating, allowing patients to get on with their lives.
These patients have lost their vision, but can maximize their quality of life. First, listen and learn who the patient is. What does she love? What is most important to them in their lives? Will our treatment make them better, or feel worse?
People with little sight can function marvelously. Mildred Weisenfeld (founder of Fight for Sight), Helen Keller, Stevie Wonder, John Milton and Johann Bach all had no “useful” vision, but functioned well. The great Argentinean author, Burgos, commented that his ability to write well only developed after losing sight. To borrow from Milton, “To be blind is not miserable; not to be able to bear blindness, that is miserable.” As physicians, our responsibility is to address the health of patients, not the data. We must focus on enhancing contentment and fostering a sense of purpose.
We should connect with our patients. We must never devalue any of the patient’s concerns. When he or she feels worse, he or she is worse. We may not initially understand why. We must congratulate patients who are already coping well. In patients who have a poor quality of life, we must remind them that all is not lost, and direct them to resources that will enhance their lives.
Barry W. Rovner, MD, and co-workers have demonstrated that counseling patients with macular degeneration is more likely to result in improvement or preservation of a patient’s quality of life than some treatments.1 Many agencies give patients skills, knowledge, and access to a community that can enhance their independence and quality of life.2 In Philadelphia, we are fortunate to have the Associated Services for the Blind (asb.org) just steps away from our institution.
When communicating with a patient who is discouraged, speak directly. Remember that your body language and the words you say will stay with the patient until the next visit. Our goal is to create an environment that engenders realistic hope, commitment, and action—one that encourages health. In doing so, it is likely the patient will leave with the tools to improve their quality of life. Our privilege as eye doctors is to help enhance health, preserve sight … and provide insight. REVIEW
Dr. Shah and Dr. Spaeth are in the Glaucoma Service at Wills Eye Hospital, where Dr. Spaeth is the Louis J. Esposito Research Professor. Contact Dr. Shah at (215) 928-3197 or firstname.lastname@example.org.
1. Rovner B, Casten R, Lieby B, Tasman W. Activity Loss is Associated with Cognitive Decline in Age-Related Macular Degeneration. Alzheimers & Dementia 2009;5:12-17.
2. Spaeth GL. One simple question can change the world. Pharos, 2010;73(4):27-28.