For Doctors: Talking to Your Patients About Visual Impairment
by the VisionAware Peer Advisors
Having "the Talk" with Your Patient
Talking to your patient about losing vision is something that many doctors dread. You are trained to give the good news about 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 persons with macular degeneration and diabetic retinopathy.
Most people fear vision loss and will go through a grieving period as they learn to adapt to it. This grief process has been likened in the literature to the grief process of a death. Elisabeth Kübler-Ross developed five stages of grief people experience when grieving a loss: denial, anger, bargaining, depression, and acceptance. 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 our team of advisors who have experienced vision loss ourselves.
Setting the Stage
- First, create a quiet setting in which you can talk to your patient and his/her family members, if your patient is comfortable with having the family 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.
- 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, support groups, and talking book programs. You may want to talk to representatives of these resources ahead of time so that you are familiar with what they offer and also have a comfort level in referring your patients. Develop a relationship with them.
- Organize staff in-services to educate your practice on helpful and relevant topics, including vison rehabilitation and low vision services. Develop a relationship with local agencies.
Discussing Vision Loss with Your Patient
- 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 for when they are ready to learn more about their condition.
- 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.
- Don't let a patient go out the door without hope and connection to additional help.
Getting Started Kit
- Give your patient and family members some information to take with them. You may want to print out VisionAware's Getting Started materials that you feel would be useful and/or have information available in your office about local resources.
- 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 at first.
- 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.
- 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.
- 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.
- 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.
- Develop relationships with local vision rehabilitation resources. Ask them to be in your office once or twice a month to meet patients that you have referred to them and also to educate staff.
- 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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