“The protocol is that when necessary, we go off protocol,” says ophthalmologist Susannah G. Rowe, MD, MPH, about the service she founded at Boston Medical Center designed to give adult neurodiverse patients better access to cataract surgery. The idea for the program, called Exceptional Vision Service (EVS), came from her experience years ago of operating on a neurodivergent patient.
One out of a dozen cataract surgeons scattered across the country who prioritize patients with neurodiversity, Rowe found her patient did not respond well to the typical post-op protocol that requires patients to wear eye shields with eye numbing. They had difficulty understanding the surgery and could not tolerate the eye shield, eventually having to be restrained in bed and admitted to the hospital for sedation.
Determined to improve the experience for her patients with autism, Parkinson’s disease, Down syndrome and other special needs, Rowe identified opportunities uphold the typical standard of care while providing a better experience for these patients. She developed a protocol to make cataract surgery more accessible to neurodiverse patients, incorporating several components that are now critical to her program’s success:
- Involving caregivers in the treatment plan at every step
- Modifying the visual function assessment
- Performing surgery without requiring patients to wear an eye shield
- Providing a specialized anesthesiology experience
- Safely discharging patients without a local nerve block
Involving caregivers in the treatment plan at every step
Caregivers are an important part of a patient’s medical journey. Both neurotypical and neurodiverse patients can often rely on this relationship to help navigate their surroundings and care – even more so for a patient with impaired vision.
“Patients are exquisitely sensitive to the emotions of their caregivers, looking to them for cues about whether they are safe,” says Rowe. “Building a therapeutic relationship requires understanding and acknowledging the trauma that both caregivers and patients may have experienced during previous medical care, and an assurance that no matter what, this will not be a scary or painful experience.”
For this very reason, the EVS team has committed to a deep integrating of both the caregiver and the patient in the overall care plan.
Modifying the visual function assessment
Indications for cataract surgery from the American Academy of Ophthalmology (AAO) require “a decline in visual function such that it no longer meets a patient’s visual needs and for which surgery provides a reasonable likelihood of improvement.” Neurotypical patients can read letters from a chart, discuss how their vision change is affecting daily activities, and tolerate an up-close examination with bright lights on the slit lamp, allowing the clinician to assess the degree of visual impairment and determine whether it is due to cataract while in the office. This information then informs a discussion on when to have surgery.
For neurodivergent patients who have difficulty communicating, Rowe’s team employs other strategies to build an understanding of baseline function. For example, patients may have lost interest in hobbies like doing puzzles or work assembling boxes. Perhaps they no longer focus on food placed in front of them, or have difficulty navigating familiar spaces. During this process, Rowe always considers the potential impact of vision loss on quality of life, depression, anxiety and cognitive decline. Often, a detailed history paired with a limited visual assessment and modified physical examination is enough to allow Rowe to decide whether surgery is needed. At other times, Rowe finds it is better for the patient to perform most of the examination under anesthesia. In this case, she makes the diagnosis in the operating room and proceeds immediately to surgery if needed.
Performing surgery without requiring patients to wear an eye shield
Rowe is equipped to treat neurodivergent patients who may have delayed care due to a variety of reasons, and as result, have cataracts that are larger and denser. She considers each EVS cataract as potentially traumatic due to the prevalence of self-stimming behaviors with the potential to cause damage. Thus, the risk for intraoperative complications is higher than for a typical cataract.
Self-stimming behaviors and the inability to tolerate an eye shield poses challenges in the post-operative period as well. Often, caregivers say that an inability to prevent eye rubbing is the greatest barrier to eye surgery. Rowe knew that if there was a safe way to eliminate the standard requirement to wear an eye shield and to allow patients to rub their eye post-operatively, this would greatly improve access to needed care. Over time she evolved her wound construction technique to create a very stable incision that tolerates can withstand vigorous rubbing. This technique also causes minimal irritation and sensation of a foreign body in the eye post operatively, resulting in less subsequent provocation. Using this suture-less clear corneal incision, Rowe has had much success in performing cataract surgery without requiring patients to wear an eye shield. On a recent review of 87 consecutive surgeries, there have been no postoperative complications of leaks or infections.
Providing a specialized anesthesiology experience
The EVS team is composed of ophthalmic technicians, anesthesiologists, and nurses who are comfortable with modifying existing protocols to meet patient’s needs while maintaining the highest standard of care. Cataract surgery patients typically receive Monitored Anesthesia Care (MAC), or conscious sedation, allowing them to follow instructions during the procedure and breath on their own. However, anesthesiologists who work with EVS patients are trained to determine whether a patient will tolerate an insertion of an intravenous (IV) line, or whether they may need oral sedation medication first. Similarly, pre and post op nurses learn the best approaches to keeping EVS patients comfortable when they are scared, confused or in pain.
Safely discharging patients without a local nerve block
Patients with difficulty communicating their need for pain medication are often discharged with a local nerve block for pain control. However, when unable to feel pain around the eye, patients may unintentionally cause damage to the vulnerable area with their own hands if they apply too much pressure.
Rowe began asking her neurotypical patients about their post-operative experience with pain, and found most were comfortable without pain control. She found that discharging neurodiverse patients without a local nerve block actually has the benefit of deterring patients from self-stimming behaviors, as they can feel and avoid any painful actions, eliminating the need for a post-operative eye shield in the first place.
While Rowe acknowledges that “EVS patients require longer appointments, longer Operating Room time, more clinicians, and more resources,” she says any site that conducts pediatric cataract surgery requiring general anesthesia is logistically equipped to conduct special needs patients’ cataracts as well. Her hope is to give experienced cataract surgeons this reassurance that serving patients with special needs is not only possible but vital.
