ophthalmic patient physician
Health & Well-Being

Be An Informed Patient

Jun 14, 2017

Be An Informed Patient

A visit to your ophthalmologist can come and go in a blur. Time with the doctor may be brief, so it is important to be prepared. The doctor’s goal is to help you, to do no harm.

  • Ask the physician to use common words and terms. Feel free to say “I don’t understand, please explain.”
  • If you don’t understand, say so. Don’t be afraid of disappointing or hassling your physician.
  • Summarize back what you heard, to clarify your understanding. “So you are telling me that age-related macular degeneration will make me blind.” The doctor responds, “No, I am saying that there will be some loss of your central vision, possibly to the level of legal blindness, which is not total blindness.”
  • Request written materials, or even pictures or videos that you can take time to understand and absorb at home.
  • Ask for best-case, worst-case and most likely scenarios, along with the chance of each one occurring.
  • Ask if you can talk to someone who is living with the condition, or has received the treatment.
  • Explore alternative treatment options.
  • Write your questions so you don’t forget anything.
  • Take notes.
  • Bring someone with you as an advocate, it may be easier for them to ask questions you are reluctant to ask.

It is crucial to be an Informed Patient when considering treatment or potential participation in a clinical trial. Clearly review, discuss and weigh the possible benefits against the risks. Consent forms are often many pages of medical and legal jargon, challenging for anyone to read, but especially hard with a visual impairment. Do not sign or agree to anything you have not read and understood completely.

This good advice was inspired by from an article in the New York Times titled, “Informed Patient? Don’t Bet On It,” by Mikkael A. Sekeres, MD and Timothy D. Gilligan, MD, March 1, 2017.

 


About the Author: Dorrie Rush

Dorrie Rush is the Chief Content Officer and Visual Accessibility Expert at Ophthalmic Edge Patients (OE Patients), an online resource, presented by the Association for Macular Diseases, providing practical information and empowering advice for living a full and successful life with vision loss.

She is the former Director of the Grunwald Technology Center and Information Resource Service at Lighthouse International 2001 to 2016. Dorrie is known to have an eccentric view, which is particularly useful in compensating for her central vision loss from Stargardt Disease.

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