Breaking Bad News to Eyecare Patients: 7 Tips to Improve Your Delivery
By Kate Gettinger, OD October 14, 2021
As the rates of ocular disease and visual impairment are projected to rise dramatically over the next several decades, many optometrists may find themselves being the initial diagnosis source for a potentially sight-stealing disease. Every optometrist needs to understand the importance of delivering truthful information to a patient, as well as how to convey this information with compassion and tact.
It can be an uncomfortable and difficult position for an eye care professional to be in; none of us want to be the bearer of bad news. However, there will inevitably come a time when we must be the ones to inform a patient of bad news, and so it is helpful to be prepared for these encounters.
Some optometrists may say to themselves “I won’t be the one to deliver the bad news: I plan to refer these patients to a secondary or tertiary-level practitioner.” However, this logic is inherently flawed for several reasons.
First, even if you are referring a patient out, the patient will still likely ask why they are being referred, if there is a treatment available, and what is their likelihood of going blind. We cannot fault patients for asking these questions. Vision loss has been described by nearly half of Americans as “the worst possible health outcome,” with many ranking losing sight as worse than losing hearing, speech, memory, or a limb. So, even if you are referring the patient to another provider, you may still find yourself being faced with tough questions.
In addition, if you consistently brush aside the severity of a condition and leave it to a secondary or tertiary provider to deliver the news, you are immediately putting a significant strain on the patient-provider trust relationship, both for yourself and the other provider. As a low vision specialist, I often have patients who come in with unrealistic expectations of their vision loss, thinking that diseases like macular degeneration or an optic neuropathy are completely reversible or will gradually improve.
While I don’t believe that referring optometrists are directly telling my patients erroneous information, their refusal to educate the patient at the time of diagnosis leads to unrealistic and incorrect assumptions about the nature of the disease. When it falls on me to deliver the bad news, the patient has every right to be initially skeptical. They have now received two different prognoses: one that isn’t accurate but is more hopeful, and one that is accurate but much more devastating. Which prognosis do you think the patient will cling to?
Patients that are unwilling or unable to accept the reality of their diagnosis will have less compliance with treatment and are less likely to seek out appropriate care. In the long run, by skipping the bad news you might save yourself a few uncomfortable minutes in the exam lane, but you could be setting your patient up for a lifetime of emotional and physical distress.
In addition, you’ll end up with a frustrated secondary and tertiary practitioner if they are continually being confronted by patients who have been told an inaccurate prognosis. When I have had to correct the prognosis for low vision patients who have come expecting a cure, I have had patients call me a liar, despite the fact that I was actually the one giving an accurate assessment. Again, if someone gives you a good diagnosis and a bad diagnosis, who will you want to believe, for better or for worse?
So how do we as primary providers have these delicate conversations with patients? While you may not have been born with a perfect bedside manner, you can still adopt strategies to become better at explaining a diagnosis and making sure a patient understands his or her prognosis.
1. Choose a suitable time and place to discuss bad news
You may know your patient is in for a dose of bad news well before you actually finish your examination. It may be that your staff handed you a retinal photo from a work-up, or an OCT scan, or maybe noticed something on slit lamp examination early on in your examination. The key is that when you determine the diagnosis may not coincide with the right time to deliver the news.
It is critical to allow uninterrupted privacy when discussing sensitive topics with patients, so don’t deliver bad news in the waiting room, the crowded optical area, or even around unnecessary staff members. Giving patients privacy lets them have the opportunity to ask questions and emotionally process the news without concern about the opinion of others around them.
It can also be helpful to sit down when speaking to the patient, especially at eye level. When standing above the patient or remaining distant, it can feel cold and aloof and make the patient feel like he or she is being judged or condemned to their condition.
2. Do not lie
This feels like it should go without saying, simply due to ethical and legal responsibilities we hold as doctors, but this area can get a bit grey. Sometimes, it can be tempting to omit information that the patient didn’t specifically ask about, but that you know is critical to understanding the prognosis. While you are not technically lying, you aren’t really telling the patient the truth, either.
Don’t be afraid to admit when you don’t know. Sometimes we feel a lot of pressure to always be correct and never seem infallible, but many ocular diseases are inherently unpredictable, and their progression can be moderated and mediated by any number of factors. You will often need to walk the line between optimism and pessimism, keeping a realistic lens on the diagnosis at all times.
If you are confident in a diagnosis, don’t delay telling the patient. Coming to terms with a bad diagnosis can take time, and all the time that you wait to deliver the news because you are uncomfortable, is time that the patient won’t have to try to move forward with their lives and acceptance.
In addition, some patients who are given the news that there is a high likelihood that they will lose their vision prefer to be proactive and begin to look at low vision aids and resources before they begin to actually lose sight. You should not assume that a patient would prefer to put off hearing a bad diagnosis.
3. Deliver the news slowly and in plain terminology
If you know you will have to deliver bad news, it is usually best to break into the matter slowly. For example, you may lead into the news with a statement like: “I know you have been frustrated with your vision lately. Unfortunately, I don’t think a change in your glasses’ prescription will help this. The cause is actually due to the tissue in the back of your eye, called the retina…”
In general, you want to avoid medical jargon and terminology, but it can be helpful to provide a few specific terms if you are willing to explain them in a way that patients can understand. In the example above, we mentioned the retina as a tissue. I often will use the analogy of a camera when describing a retinal disease to a patient:
“If we think of the eye like a camera, the retina is like the film of the camera. We can put whatever lens we want on the camera, change the settings, turn the flash on or off, but if the film is bad, the photos that develop will always be bad, no matter what.”
In this way, it gives the patient an example that is often more understandable than medical terminology, but it also starts the conversation about how traditional treatments will not solve the condition.
Be sure to check for patient understanding throughout your conversation. Don’t simply wait until the end, when the patient is likely overwhelmed and mentally processing the news. I periodically will stop and use phrases like “does that make sense?”, “am I explaining that well?”, or “do you have any questions?”
I often avoid directly saying “Do you understand?” because that can sometimes put-off a patient who may feel embarrassed for not grasping the concept and they may not be honest if they are confused.
4. Show empathy and adopt an appropriate tone
While it can be tempting to avoid displaying any emotion when delivering bad news and instead remain a completely impartial, stoic, and composed authority, it is more helpful to empathize with your patient.
You can express empathy by tying it into open-ended questions to take stock of a patient’s concerns. For example, you can state: “I know this isn’t what you probably wanted to hear. Are there questions you have for me? Let me know what you are thinking.”
Patients may not think they have questions, but if you ask what they are thinking this will often elicit concerns that can be addressed as if the patient did ask about it. By making the diagnosis a discussion rather than a one-sided report, you can help the patient take great strides towards accepting the diagnosis and understanding the true outlook.
Be sure to listen to the patient and watch their body language. Giving patients time to speak and express their thoughts and ask questions shows that you respect the patient and are compassionate about their understanding and acceptance of the diagnosis.
You may also find that patients have concerns that aren’t even tied to the diagnosis. For example, I had a low vision patient who was nearly in tears when asking about her macular degeneration, because she was worried it was going to make her eyes look opaque and she would frighten her grandchildren. This was her main concern, and she had wrestled with this fear for weeks since receiving her diagnosis. If you allow your patient to express their thoughts and concerns, you might find that you are able to relieve some of their distress fairly easily while in office.
As a rule, don’t adopt humor as a buffer to bad news. It may seem like a good idea to make light of the situation or soften the blow, but it almost always backfires and comes off as insensitive and mocking.
5. Be ready to discuss treatments
Most patients will want to know: “Okay, I have this, now what?”
Depending on the diagnosis, the answer to this question may vary significantly. The point is that the answer is very rarely simply “nothing.”
If there is a treatment available, such as for wet macular degeneration or glaucoma, let patients know of the existence and general process. You don’t need to know every step for an anti-VEGF injection, but it can be helpful to explain that the patient may need to receive injections as frequently as every 4-6 weeks, if the condition is severe. It is critical, however, to emphasize that these treatments are not to restore sight or “cure” the patient. They are to maintain ocular health and prevent further deterioration. Do not omit these details.
If there is no treatment available, then make sure the patient knows about low vision resources. It can be helpful to have a list of low vision specialists in your area that you can refer patients to for assistance. Again, these specialists are not going to cure the patient, but will focus on aids and strategies to help the patient utilize their remaining vision to maintain independence and functionality in daily life.
You can also offer patients the option of a receiving second opinion, even if you are confident in your diagnosis. Some patients may be afraid to consult another doctor for fear of offending you, but if you express your confidence and let the patient know they are welcome to pursue a second opinion, this can help reassure them.
6. Remember to highlight any positives
Obviously, a poor diagnosis is going to be a shock to anyone. However, it can be useful to emphasize any potential silver linings. For example, you may discuss how dry macular degeneration tends to be slow progressing, and even in the worst cases of wet macular degeneration one will not go completely black-out blind, because the peripheral retina will remain intact.
For glaucoma, I often remind patients that we have become very good at treating glaucoma, and as long as the patient remains compliant to treatments and continues all follow-up appointments, there is a good chance of preventing further vision loss.
7. Provide patients a way to contact you at a future time with questions
For this reason, I always give these patients my card with contact information. I sympathize and usually say something like “I know I just threw a lot of information at you, and you will probably need time to process it. If you have any questions or concerns, please do not hesitate to contact me. I am more than happy to answer any questions about your eyes.”
In conclusion, none of us want to have to be the one who conveys bad news to a patient, but as a doctor it is our responsibility and duty to accurately inform our patients of their prognosis. By embracing the steps above, you can be well on your way to learning how to deliver the news more effectively and empathetically.