Empathy in Low Vision
By Jasleen K. Jolly MSc MCOptom with Richard J. Shuldiner, OD, FAAO
Bad news is any news that drastically and negatively alters the patient’s view of their future. Vision loss can cause a whole host of emotions and can impact on a number of levels: loss of identity, reduced self-worth, fear about job and the future, loss of independence, mourning for the loss of lifestyle such as the ability to drive, and family guilt in genetic conditions. All of these emotions must be dealt with in a sensitive and empathetic way. The sooner and more effectively this is done by the clinician, the better the longer term adjustments and outcomes of the patient.¹
It is helpful to respond to the patient as an individual as each person will have different emotional needs and concerns that will need addressing. Patients go through a grieving process and this takes them through a range of emotions and thought processes which must be supported by the clinician.² The phrase “nothing more can be done” is one of the most damaging sentiments that can be expressed.
Adequate support and referral, particularly to peer support, is associated with better outcomes. Referral for low vision rehabilitation is also associated with better outcomes. A proactive approach to coming to terms with vision loss and seeking help encourages positive adjustment.³ This is something that eye care providers are in the perfect place to facilitate and if we get this wrong at the start, it can cause significant harm to the future care and attitude of the patient.
Things to remember:
- Bad news is difficult, but if done well it can be comforting and reassuring.
- It’s a difficult balance between being grave and frightening the patient.
- When bad news is delivered, a person’s ability to take in more information becomes limited – explain clearly, simply, and allow the chance for questions. Allow time for them to digest what you are saying.
- We become desensitized seeing many people with vision issues. You may see it as not as bad as others you have seen, but that doesn’t mean the patient will not be devastated.
- Vision loss can be different than other bad news – at times it’s the process and other times it’s the sudden change that causes uncertainty.
- Vision loss is life changing. People react differently. Some may take what you consider minor news as severe while others may take severe things with minimal change.
- Some of this news will not just affect the patient but can also be devastating to the family. The patient may be more concerned about the family or job aspects. In inherited conditions, parents may blame themselves as they think they have “given it” to their child.
- Ensure you lay out what to expect and what will happen next, including referrals to other services, especially Low Vision Care.
Here are some do’s and don’ts for consultations with low vision patients:
- Ask the patient if they would like someone with them or prefer to be alone.
- Talk directly to the patient and not at the accompanying person, even for teenagers and children.
- Go through the notes and have the facts at hand before the discussion.
- Introduce everyone in the room.
- Ask permission before speaking to students or colleagues.
- Ask permission before touching the patient or guiding them.
- Look them in the eyes – even if they cannot see, they will hear you better and this will be noticed by the support members.
- Use plain language, check understanding and validate emotions.
- Provide hope with information about current research.
- Keep tissues handy.
- Provide further information on support services.
- Do not rush.
- Don’t be dispassionate or insensitive. React to the individual.
- Don’t tell people there is nothing more that can be done.
- Don’t tell people they just have to adapt.
- Don’t give false hope but don’t eradicate hope either.
- Don’t take anger personally. Acknowledge their frustration.
- Don’t talk down to people.
- Don’t talk over people at appointments.
- Don’t scare people – explain what is happening in the appointment as you go along.
- Don’t belittle worries. Instead, provide explanations.
- Fallowfield L. Giving sad and bad news. Lancet. 1993;341(8843):476-478. doi:10.1016/0140-6736(93)90219-7
- Boerner K, Wang SW, Cimarolli VR. The impact of functional loss: Nature and implications of life changes. J Loss Trauma. 2006;11(4):265-287. doi:10.1080/15325020600662625
- Nyman SR, Dibb B, Victor CR, Gosney MA. Emotional well-being and adjustment to vision loss in later life: A meta-synthesis of qualitative studies. Disabil Rehabil. 2012;34(12):971-981. doi:10.3109/09638288.2011.626487