Notes on Delivering a Difficult Diagnosis

Optometry as a profession has a high cure rate. A patient comes in with blurry vision, you refract them, they walk out with a new glasses prescription, and everyone is happy. But, how do you handle the cases that you can’t cure? What about chronic dry eye disease or ominous diagnoses in neuro-optometry?

These conversations can be difficult for many optometrists to broach. It may be that they do not occur often enough for them to feel comfortable in delivery, and we weren’t necessarily taught these skills in school. In this article, we discuss how to best start an important, possibly difficult, conversation with your patients to ensure their overall well-being and satisfaction.

ON EMPATHY & READING THE ROOM

One of the most crucial aspects of handling tough conversations is being able to empathize with the patient’s emotions and concerns. Depending on the patient, the presence of caregivers, and their current state of mind, the delivery of a diagnosis and its associated treatment may differ widely.

It’s important to know how to deliver the news while creating a safe environment for your patient to express their fears, worries, and questions. The key is to be genuine. Keep in mind your relationship with this particular patient—maybe you have known them their entire lives or maybe its their first visit.

While going through the examination and talking with the patient, optometrists typically get a good sense of their personality and mindset. This is also especially important when formulating how to open the conversation when delivering difficult news.Ask yourself the following questions:

• How has this patient reacted to other discussions regarding news, such as prescription changes?
• Are they anxious?
• Did they recently receive other bad news?
• Are they alone in the exam room?

This last question is particularly important if your patient has memory issues due to age-related neurodegeneration or a brain injury. Always ask if they would like anyone else present in the room while you review their test results.

HONESTY

Sugarcoating an ominous diagnosis can be dangerous. It may not provide the urgency needed for your patient to follow up with the next steps to manage their health. However, there is a balance in the delivery.

It’s essential to convey the importance of the diagnosis and the prognosis for treatment without causing panic. This is easier said than done, but with proper confidence, you can gain the patient’s trust, which is needed to ensure their compliance. We find that giving patients the facts in a digestible way, followed by a firm plan of action, allows them to feel confident in their care.

CLEAR COMMUNICATION

Be cognizant of the terminology you use when explaining conditions and diagnoses. Many times patients may become caught up on a word or term they don’t understand and stop listening to everything else you say beyond that. They hear “glaucoma” and their brain races to “blindness” and they neglect to hear the word “suspect” or “low risk.” This can be especially problematic with neurologic problems or biopsy results. Don’t assume a patient knows the difference between benign and malignant. Take the time to explain things in simple terms. Ask if they understand or have any questions about what you said or the terminology used. Don’t forget that a picture is worth 1,000 words. Having handouts or links to help guide their literature search and for them to read after the visit can be valuable.

KEEP THE DOORS OPEN

We find that patients often need time to digest information, discuss it with family members, and look it up on the internet. It is often only then that they are ready to talk. To give our patients sufficient time to process the news and make more informed decisions, we find it helpful to offer a telemedicine follow-up visit a few days or a week out to answer additional questions or address any concerns. If the patient needs to decide on a treatment option, give them your professional opinion and then have a conversation with them to allow them to participate in their own health care decisions.

CASE EXAMPLES

Now that we’ve reviewed some tips for handling these hard conversations, let’s go over what you might say when having one with your patient.

Demodex Blepharitis

“Dave, overall your eye health is good and there has been no change in your glasses prescription. The itching you mentioned is not due to allergies. I’m noting a little overgrowth of bacteria and Demodex on your eyelids. Demodex are skin and hair mites that everyone has.

“I know it sounds awful, but we typically don’t notice them unless there is an overgrowth and things get out of balance. This usually happens when their food source, bacteria, is in abundance.

“Just as we brush our teeth and wash our face to control bacteria, we also need to clean our eyelids. I’m going to start you on a regimen to get them under control and then keep you on daily hygiene to help decrease the risk of this occurring again.”

Ominous MRI Diagnosis

“Mary, I just received your MRI results, and I’d like to go over them with you. Is now a good time?

“You remember that we were obtaining the scan because I was concerned your symptoms were caused by the nerve behind your eye being inflamed. The scan came back showing no masses or tumors, which is good, but it does confirm that the nerve behind your right eye is inflamed. This means that you have something called optic neuritis, which can happen spontaneously or in relation to other systemic problems. We will obtain testing after treatment to figure this out, but it may affect how well your vision recovers.

“The important thing now is to get you into treatment so that we can resolve this inflammation. I know this is not what we were hoping for, but at least we know what is going on and can get you treatment. I will be here to help walk you through what needs to be done and get you to the right specialists.”

Revoking a Drivers License

“Unfortunately, Mrs. Smith, your visual field test results show severe vision loss on the right side. This is due to the stroke you experienced. As you can see in this diagram, although both of your eyes are healthy, your brain is unable to process any of the visual signals coming from the right side. Studies have shown that of people with vision loss like this post-stroke, about 50% will stay the same with permanent vision loss, 30% to 40% will partially recover, and only 5% to 10% will fully recover all of their vision.

“With this amount of vision loss, it is not safe for you to drive, because you wouldn’t see someone walking in front of your car from the right side until they crossed the center of your car, and by that time you would have hit them. I know this is shocking news, and it can be overwhelming to be told you can no longer drive. How do you feel about this? (Pause, let them respond, and validate their feelings.)

“Most people who do recover their vision do so within the first few weeks to months post-stroke. Let’s schedule a follow-up visit to repeat your visual field testing. If you have any questions between now and then, don’t hesitate to call the office, and we can schedule time to talk about your vision.”

WELL, THAT DIDN’T GO AS PLANNED

Sometimes it happens—you do everything in your power to handle a situation as best as you can, but the end result is less than stellar. The patient may be upset and feel that you have been insensitive. Perhaps they don’t trust your diagnosis. It could be due to a misunderstanding, poor delivery, a conflict of personalities, or simply a lack of trust. It can also have nothing to do with you, but be a manifestation of the patient’s underlying worry or previous history with health concerns or health care providers. Never hesitate to give patients the option to seek a second opinion or discuss their diagnosis further with you at a future time. A sign of a great doctor is one who empathizes with the patient; understands when to step aside, seek a second opinion, or confirm a diagnosis with a colleague; and always advocates for the patient’s health and well-being.