Tips for Doctors

Talking to Your Patients About Visual Impairment by Individuals with Lived Experience with Blindness or Low Vision

Having “the Talk” with Your Patient

Talking to your patient about losing vision is something that many doctors dread. For example, if you are an ophthalmologist, you are trained to discuss what you can do to save vision or restore sight. But you can’t do that for everyone. The situation is worsening with the dramatic growth in numbers of older people with macular degeneration and diabetic retinopathy.

People often fear vision loss and may go through a grieving period as they learn to adapt to it. Vision loss changes your patients’ lives in dramatic ways and they will need help with the adjustment process.

The good news is there are some things you can suggest that will help your patient adjust to vision loss. And as your patient’s trusted doctor, you may be the only person who can deliver that news and have it hit home. Following are some ideas that can help you, assembled by a team of advisors who have experienced vision loss.

Setting the Stage

  • First, create a quiet setting in which you can talk to your patient and his/her family members or friends if your patient is comfortable with having them in the room.
  • Think about your own feelings about vision loss and come to terms with those feelings. Expect that you may have strong emotions yourself. You may feel as if you have “failed” your patient because you have not been able to preserve his/her vision. If you consider vision loss to be the absolute worst thing that can happen to your patient, this will come across in your discussion.
  • Recognize that talking to patients may take some time, but that your time and patience may be the best “treatment” you can offer your patient. Understand that there may be cognitive or other issues that make it difficult, but if possible, talk directly to the patient, not the family member.
  • Familiarize yourself with resources in your community that can help your patient cope with vision loss and take back control of their lives—such as low vision resources, vision rehabilitation services, and support groups. The APH Connect Center offers a list of blind and low vision support resources. The National Library Service offers braille or audio books to people with temporary or permanent low vision, blindness, or a physical, perceptual or reading disability that prevents them from using regular print materials.
  • Connect with these organizations ahead of time to understand their services and referral process. Becoming familiar with resources for different types of vision impairment will help you confidently guide patients to appropriate support. Building these relationships strengthens continuity of care and can significantly improve patient outcomes and independence. 
  • Organize staff in-services to educate your practice on helpful and relevant topics, including vision rehabilitation and low vision services.

Discussing Vision Loss with Your Patient

  • First, take a few minutes to familiarize yourself with There Is Something Else You Can Do, a six-minute video from the American Academy of Ophthalmology that emphasizes both the impact of vision loss on your patient and the responsibility of the eye care provider to refer to, or provide, appropriate vision rehabilitation services.
  • Encourage your patient to involve his/her family in the discussion. It is crucial for family members to understand that their loved one will not be helpless and that life is not over, that with appropriate help and services he/she can still be productive and active.
  • Tell your patient about your diagnosis or findings matter-of-factly. Also, even though you may be upset with your patient if you feel he/she has not followed a treatment regimen, implying that the vision loss is the patient’s fault is harmful to the patient coming to terms with their vision loss.
  • Direct your patient to reliable resources of information about their eye condition for when they are ready to learn more.
  • Allow time for your patient and family members to absorb the information and to ask questions.
  • Create hope, not despair. Often patients only hear the message “There is nothing more I can do.” and stop listening. You can be the bridge to help them maintain productive lives, work through their feelings, and connect to resources.
  • Talk slowly and patiently. Do not rush your patient. Do not overwhelm them with too much information.
  • Give your patient and family members a chance to talk.
  • Listen and acknowledge that both your patient and family members will have strong emotions about loss of vision and what it means—such as anger, sadness, denial, and even fear.
  • Address issues that may be of concern—such as driving, taking medications, reading, doing everyday activities, mobility and safety, and getting or keeping a job. The day-to-day impact of vision loss can be quite overwhelming both in having to learn new ways to do things and in the emotional impact.
  • Don’t let a patient go out the door without hope and connection to additional help. Give your patient and family members information to take with them such as the tip sheet in our resources list below and/or have information available in your office about local resources such as local associations of the blind, local chapters of the National Federation of the Blind and the American Council of the Blind, and state rehabilitation services, which are usually available through the state's government website. Services available through state and local agencies serve people across the entire vision spectrum—using terms like “low vision,” “visually impaired,” and “blind.” The word “blind” may put some people off, but assure them that these programs serve people who have low vision.
  • Also, keep brochures handy in your office so it is easy for your patients to find information about resources that will help. They may be too embarrassed to ask or to tell you that they lost the ones you gave them or that they were too overwhelmed in the beginning to even think about resources that are available.
  • Encourage your patient to take advantage of these programs. Cite examples of patients who have been helped by these services or discuss role models with whom they may be familiar, such as a local person with vision loss who is well-known in the community.
  • But remember that your patient may be in such a state of shock over your diagnosis that he or she may not hear what you have to say in the beginning.
  • You may need to follow up with your patient. Call or schedule him or her for another visit. Ask if he/she has any further questions and determine if he/she has followed through on your recommendations.

Additional Suggestions

  • If you are in a busy practice and do not have the time to talk at length with your patient, you may want to consider having one of your staff members take on this job—but only after you have broken the news and given them some hope. As their physician, you can make the most impact.
  • Make sure that your staff is psychologically prepared to talk to patients and aware of the resources that he/she can offer the patient.
  • Consider creating an audio or video that your patients can take home with them that covers the points you would cover in a one-on-one session. Your words of comfort, hope, and encouragement may make a real difference in their lives.
  • Work with a local grief counselor, nurse, or social worker to offer a support program and/or find out about support groups in your community.
  • Give your patients the opportunity to live well after vision loss. Give them the gifts of hope, helpful resources, and a vision for the future.

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Resources You Can Use for Patient Education and Referral