96: Breaking bad news

Breaking bad news to patients is difficult. Very difficult. It requires clear slow simple words, kindness, understanding, and patience. This should happen in a quiet private place without unnecessary people. Checks should be made to make sure the person has understood the bad news. It can be uncomfortable.

I find this definition of bad news useful: information that is perceived as negatively impacting one’s lifestyle or view of the future. It needs to be remembered that the same nature of bad news for one person results in a nonchalant shrug of the shoulders and a sense of inevitability and for another person it can be devastating. The same bad news means different things to different people. Bad news is relative to the individual who receives it.

Here are some types of bad news eye care specialists sometimes have to give to patients.

The diagnosis of eye disease that has already affected or will affect vision. Terms like glaucoma, diabetic retinopathy, and macular degeneration can make the average patient feel uncomfortable. Eye jargon can be intimidating and may cause a patient to be confused, anxious, fearful, and upset. The primary fear is that they’ll go blind. I remember telling an adult patient that he had astigmatism and before I could explain what that was, he fainted. Tell the patient the name of the condition and write it down along with the part of the eye it affects. Let them know if there is any treatment and help them access that treatment. If there is no treatment let them know this and give them a time span over which the vision may deteriorate. For example, for people with early dry age-related macular degeneration, I say that it is a slow disease that grumbles along slowly and may take years to get worse. I tell them that this is a very common occurrence in people in their age group and that it’s the passage of time that has caused this. I also let them know that even at its worst they will maintain peripheral vision. I advise them about the possibility of it converting to the wet type, what to look out for, and what to do if they experience the typical symptoms of the wet type. This is called safety netting. I offer nutrition supplements to supplement a good diet and not instead of a good diet.

I then provide a space to ask questions. I take a moment to address any questions. I emphasise the benefit of adhering to the proposed management plan or referral and make myself available to answer additional questions beyond that visit. Patients can phone me or drop by the practice.

Irreversible vision loss of any degree can be devastating news for a patient and can trigger an emotional response. Patients may express shock, anger, sadness, and fear. There may be guilt felt by the patient, that if they just went to the doctor sooner or took better care of themselves, they would have avoided a bad outcome.

Pause, listen, be empathetic, and allow them time to collect themselves. Reassure the patient that, despite a life-changing diagnosis, there are resources that they may benefit from to help them adjust to their new way of life. Affirm that their feelings of fear, anger, sadness, etc., are valid, but point out that there are resources available to help them navigate through these changes. Provide a handout or website references for local resources that the patient may benefit from.

Sometimes the solution is simply glasses. New presbyopia for example. But this can also cause concern. Concern about getting older. You can explain that this is a normal part of the passage of time. Some people might not want glasses. That’s okay. Inform the patient that what you’re presenting is a recommendation if their desire is to improve their vision.

Explain that their visual problems will increase with time whether they have glasses or not. Maybe contact lenses might be more acceptable. In my experience, people who don’t want glasses don’t want contact lenses even more.

Sometimes the solution is surgery. Cataract for example. Explain what is involved and approximate timelines. You can explain that this is a normal part of the passage of time. Some people might not want surgery. That’s okay. Explain that their visual problems will increase with time if they don’t have surgery and how safe (although not 100%) the surgery is.

Ask the patient what concerns them about the solutions you have offered. Sometimes you can uncover that the patient fears having surgery due to hearing about a negative outcome, or they live alone and don’t know who’s going to help them after surgery, or they are concerned about the cost of glasses.

Reassure the patient that these are normal and expected findings. Present relevant options for correction/treatment and encourage them to make the best decision for their lifestyle.

At the end give another summary of what you have found and what you have advised and what the patient should do if they have more questions or things change.