Palliative care, support vital for patients who suffer vision loss

San Francisco-Even the best ophthalmologists must prepare to support patients who lose vision while in their care, said Robert L. Stamper, MD.

Dr. Stamper, director of the Glaucoma Clinic at the University of California, San Francisco, outlined such preparations in a presentation here at the Glaucoma 360 CME Symposium.

About 20% of open-angle glaucoma progresses, even with good in-office IOP. In addition, somewhere between 5% and 11% of patients with glaucoma go blind even with the best of care, he added.

Watch as Robert Stamper, MD explains what physicians should do when their best efforts in treating patients fail.

Quoting a colleague, Dr. Stamper quipped, “If you want to be a successful glaucoma surgeon you should move every 8 years.”

After eliminating all the factors that might be contributing to progression, ophthalmologists should begin thinking about palliative care, he said.

“Once the patient has lost all vision, you do want to keep the pressure low enough to prevent pain,” he said.

In addition to pain from the pressure itself, corneal bullae can form and physicians should try to prevent them because they hurt when they rupture.

A variety of medications can help control pain, Dr. Stamper said:

• A daily dose of a 1% solution of atropine works for many patients.

• Topical steroids can also be effective, but they are a “double-edged sword” because they can lead to infections and other side effects.

• Topical non-steroidal anti-inflammatory drugs may offer relief, but may also cause corneal toxicity.

• Retrobulbar chlorpromazine and alcohol are good alternatives in some patients.

• Evisceration or enucleation can be surprisingly helpful.

“Some of my happiest patients, believe it or not, are those patients who have undergone evisceration in a blind eye,” Dr. Stamper said. “They will ask me, ‘How come you didn’t force me to do this sooner?’”

Whether or not these palliative measures work, it is important to acknowledge the patient’s feelings, Dr. Stamper said.

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“And I think it’s important to acknowledge your own feelings,” he said. “You may want to discuss the case with a respected colleague.”

When talking through options with a patient, it often helps to include the patient’s trusted friend or family member. Physicians can also help build trust by offering the patient a second opinion, he added.

Patients can react very differently to blindness, and physicians should be sensitive to cultural perspectives, Dr. Stamper said.

“It’s important to reassure the patient that it’s not the end of life, just the beginning of a different phase of life,” he said. “Consider psychotherapy. Patients have walked into my office with suicidal ideation, and I’ve had to pick up the phone and call a psychotherapist right from my office.”

Even after exhausting what medicine can provide, physicians should continue to offer referrals, Dr. Stamper said.

“It’s important to make the patient feel they have not been abandoned,” he said.

Many patients can benefit from vocational counseling, he said, adding that about 30% of blind people are employed.

Among the other types of support ophthalmologists can recommend:

• Handicapped stickers for whoever drives the patient on errands

• Technology provided by telephone companies

• Braille or large-numeral stickers provided by utility companies for cooking stoves

• Visual tints for glasses to increase contrast

• Tablet devices with backlit capability

• Computerized text enlargers

• Computerized readers

• Social Security and tax breaks

• Free postage from the U.S. Postal Service for reading materials

• Free prescriptions

• Reduced public transit fares

• Medicare and Medicaid benefits

• Services offered by state departments of rehabilitation, such as living skills management, home adaptation, and counseling

• Large print and talking books offered through public libraries  

Dr. Stamper pointed out that many blind people live very active lives; they can continue running, bicycling, bowling, skiing, golf, swimming, water skiing, and many other sports.

Physicians should assure patients that they have not lost all hope of regaining their eyesight, since such innovations as stem cell therapy are progressing.

“You can still be a guide, a sympathetic ear, and a friend,” he concluded.