Addressing Needs Beyond Disease

Three years out of residency as a comprehensive ophthalmologist, I developed severe back pain shortly followed by a knee injury. After years of seeing several different medical professionals, trying numerous different pain medications – as well as months of physical therapy and two operations – I was still in a lot of pain. And I was struggling. My work schedule had been interrupted so many times that I had to make the ultimate decision – for both my own and my practice’s sake – to stop doing surgery. It was the most difficult decision I have ever had to make. Imagine being an early career ophthalmologist again, and consider how you would feel!

What I didn’t realize, was that it would fuel an identity crisis. I found myself asking, “What is an eye surgeon that doesn’t do surgery?” Combined with the activities I could no longer do – or enjoy – at home, I felt like I was living a less-than-normal existence. I felt a tremendous sense of abandonment, and ended up being treated for two years as an outpatient for depression. It was a very dark chapter in my life. But why am I telling you this? Because I believe my story can help fellow ophthalmologists understand what their patients with irreversible vision loss might be going through.

An epiphany

When a cure exists, patients don’t tend to be labored by thoughts of what they can no longer do; once the problem is solved, they can return to their normal routine. But when pain or symptoms persist, and there is no cure, the activities that are no longer possible become increasingly noticeable. Going about daily life becomes a continual struggle. Such patients need to learn to live with their condition. Are there ways to live with chronic pain? Yes – that’s what pain management clinics are all about. There are exercises that can be done and approaches that can be taken to minimize the disability; in short, there is a way to move forwards. But no physician during my treatment journey had ever mentioned this option to me, nor addressed the issue of how I could live with my condition.

Going back to my career, I became a medical ophthalmologist by default. And I had an epiphany. When taking care of patients with AMD, I recognized similarities to what I had been through. But instead of back and knee pain, their symptoms were blurred and impaired vision. After months of dealing with their visual symptoms, these patients were realizing all the things they could no longer do: reading, driving, even recognizing their children’s faces... But did I ask them if they were struggling with any of their activities? No – because I was looking at the eye and not them. Our patients might receive medical and surgical treatments, the best glasses, eye vitamins to help slow the disease progression, and so on, but none of these things are a cure. These patients still have to live with the blurred vision that is making their day-to-day life difficult. Just as the physicians who took care of me were insensitive to the realities of living with chronic pain, I started to realize that I was being insensitive to my patients who were living with the reality of irreversible vision loss. 

After my epiphany, I asked myself whether patients with irreversible vision loss get depressed. And they do; two studies have demonstrated that around 30 percent of patients with AMD have depression (1)(2), and the incidence of depression and anxiety is higher in patients with visual impairment compared with the general population (3).

But there is help available for patients with irreversible vision loss – low vision rehabilitation. Many ophthalmologists may think that low vision rehabilitation is all about magnifiers, but it is so much more than that.

Looking beyond the disease

Low vision rehabilitation is the branch of care concerned with providing the necessary optical devices, visual skillstraining, environmental adaptations and counseling to minimize vision-related disability when no restorative process is possible. Through assessing functional history we learn what impairments patients are experiencing in their daily activities – such as managing finances, working in the kitchen or hobbies – and look at how patients can minimize their disability so that they can resume those activities. It can be something as simple as using their vision in a different way, or using optical devices or apps for assistance. The number one reason patients come to see a low vision specialist is because of problems with reading, but because many patients have scotomas, simply making the print larger doesn’t solve the problem. Specially-trained occupational therapists can work with patients to provide scotoma-compensating strategies, so that they might navigate those areas and minimize the interference.

Assessing depression is also an important aspect of our care. Although most clinicians recognize that psychiatric medication and counseling can be helpful for patients suffering with depression, low vision rehabilitation itself has been found to help prevent depression in patients with low vision (4).  It can be difficult, however, to recognize depression in patients, which is why it is often missed. Patients often get frustrated at irreversible vision loss because they may not be able to do things, but depression is very different to frustration. A depressed patient is more likely to withdraw, and upon examination it can be difficult to identify they are depressed unless you are specifically looking for it. This is where the environment of the low rehabilitation specialist is key, as we can identify the problem, address the patient’s visual impairment and get them into the hands of others who can address the mental health aspects.

But despite the benefits of low vision rehabilitation, low numbers of patients are being referred – under 15 percent. Why? Perhaps it is a combination of a lack of patient and physician awareness of the available help, as well as the increasing demands upon eyecare providers. It could also be because low vision rehabilitation is an area that needs to be grown and developed. A change is needed, and I think that ophthalmologists have an important role to play; ultimately, that role will be born out of a discussion about how we as an eyecare community can address the issue.

The road ahead

The key point I really want to share with ophthalmologists is that if we place all our attention on managing an incurable disease then we risk overlooking the importance of managing the impairments caused by the disease. Over the next 30 years, we’re facing an increased prevalence of impaired vision (5), and we must be better equipped to address patient needs.

I presently serve as Chair of the AAO Vision Rehabilitation Committee, which among other activities raises awareness of vision rehabilitation issues at meetings. However, ophthalmologists attend meetings to learn the latest research, procedures and techniques, and their mind is not on addressing the impairment in their patients. But if David W. Parke II, the CEO of the AAO, is behind the issue, shouldn’t more ophthalmologists join him?

Like most ophthalmologists, I wasn’t aware of the issue when I was in residency training. But, in my view, it shouldn’t take what I went through to recognize that we need to do something about this. The Vision Rehabilitation Committee is currently assessing how our residents are taught, and whether they are being provided with resource materials on assessing impairment – this is key.

When I embarked on my career I never had any desire of being a low vision specialist – it wasn’t my area of expertise. But a life transition called me to explore the area, and I realized how underserved and challenging it is. I am highly passionate and motivated because it ties in with the difficulties I experienced with totally different symptoms. Although we have a long journey ahead, we’re making inroads, and I am optimistic we can meet the needs of this increasing patient population over the next few decades.

Our care for patients must go further; we must look at the person behind the eye and resolve to never forget the impairments that can be caused by their disease. As Sir William Osler – one of the founding physicians of Johns Hopkins Hospital, Baltimore – once said, “The good physician treats the disease; the great physician treats the patient who has the disease.”

By John D. Shepherd, Director of the Weigel Williamson Center for Visual Rehabilitation and Assistant Professor of Ophthalmology at the University of Nebraska Medical Center in Omaha, USA.