After surveying 107 patients and sitting down to sift through an excel sheet that seemed to stretch like a desert, I’ve discovered the obvious. Patients that make less money, patients that are less educated, and patients that don’t speak English (attributes correlated with one another) all are less knowledgeable about their disease in the glaucoma clinic here at Aravind. While this is something that most people would assume to be true, isn’t groundbreaking, it does highlight a situation far from ideal.
It’s easy to witness deviation from an ideal situation so frequently that the current state of affairs is accepted without question. This happens in the U.S. often enough, while movements like Occupy Wall Street and #BlackLivesMatter attempt to bring awareness to unjust situations that many are desensitized to after a great amount of exposure. Ideally, each patient that walks into the clinic here at Aravind should have the same opportunity to walk away with basic information on their disease given that they are willing to listen and learn.
However, this isn’t the case.
From initial analysis of the data, patients whose families make 5000 rupees (~$78) per month or less have a 99.98% likeliness of not identifying blood relatives when asked who is at increased risk for glaucoma.
This is despite three posters in the clinic that provide an illustration of a family as well as text in three different languages that informs patients that glaucoma is a hereditary disease and advises family members to have their eyes checked. In addition to the posters, doctors and other staff who counsel the patients frequently provide reminders that glaucoma is carried genetically and can only be detected by an examination. Aravind has even begun organizing events just for the families of glaucoma patients to undergo an examination, either free of charge or subsidized.
However, despite this outreach, 23 out of 54 patients in that lowest income bracket weren’t able to identify blood relatives as at risk for glaucoma, compared to 4 out of 53 patients in the other income brackets.
One may expect less wealthy patients to absorb less knowledge about their disease, but after seeing their rate of incorrectly answering that question rise to a number six times that of a wealthier patients, it seems that something isn’t right in patient education.
These trends continued with patients who were uneducated or only completed some primary education (Grade 1-8) and patients who don’t speak English. Questions that these demographic groups were unable to answer correctly ranged from the purpose of follow-up visits to the consequences of not treating glaucoma (which is often blindness).
Understanding the consequences of not treating glaucoma is considered to be one of the most important things that patients should understand. Of the eight glaucoma doctors I’ve interviewed, each doctor said that it’s critical for a patient to understand that untreated glaucoma leads to permanent optic nerve damage and eventually blindness. This was the only piece of information that received a “critical” score of 5/5 from each doctor, which made me think about why the doctors consider it so important.
Information given by the glaucoma clinic that isn’t foreboding, such as how to administer eye drops, or when follow-up visits should occur, is more directly helpful to patients. A patient isn’t likely to learn a frightening fact about a disease deemed the “silent thief of sight” and experience more effective treatment. Knowing the ultimate consequence of glaucoma, total blindness after pressure on the optic nerve of the eye causes damage beyond repair, isn’t a very actionable fact.
But nonetheless, it gives the patient responsibility. When a patient is told that they’re on a path to an adverse outcome like loss of vision, and then presented an opportunity to slow their pace, they’re given the responsibility of their own health. That one piece of information can empower them to become their own personal health advocate, and gives them the first glimmer of something that every good patient needs; autonomy.
For the average new patient, they enter the clinic, wait for a doctor, undergo an examination, take a prescription, talk to a counselling professional, then pick up medication from the pharmacy before leaving. Patients don’t wield a lot of choice or power throughout the visit. Normally all they can choose to do is stay or leave, listen or don’t listen, pick up medication or don’t. All their decisions boil down to following orders (which are typically in a patient’s best interest) or to not following orders.
This made me think that maybe a patient’s lack of decision-making, or their lack of an opportunity to make a judgment, is what stops many patients from taking initiative in their treatment and follow-up. I wondered if introducing a placebo choice for medicine, where a doctor has the patient choose between medication A or B (with the pharmacy dispensing the same pill for A and B) would enable patients to feel involved in their care.
However, this made me think about if I asked my other interns for coffee or tea. Camilo may like the freedom behind making the tea or coffee decision. However, Aditi may be entirely paralyzed and taken aback by the weight of the decision, however trivial the choice may seem to some. Some people can only function with autonomy and need to have some degree of control or power in their life, yet there are others who don’t cope well with the pressure from decision-making. For this reason, giving a placebo medication could easily backfire for many patients and lead to some patients, who are apprehensive of making decisions about their health, developing a fear of the hospital.
What I realized was that although patients don’t seem to make a lot of medical decisions at the hospital, they actually make a lot of essential decisions about their treatment and follow-up outside of the clinic. Patients have to decide the who (will assist me with taking my medication), where (can I leave my medication so I always remember it), and when (is a time that I’m consistently available to take medication) of their treatment. If someone can’t provide help with medication, or if the medication is left in an inconvenient place, or if the patient is always away when they should be taking their medication, there’s a good chance that no habits for taking medication will develop. Consistent missed medications almost always lead to progressed glaucoma, evident by increased inter-ocular pressure which leads to optic nerve damage and vision loss. Doctors want patients to understand this relationship so badly because they believe that patients will take their medication if they understand what’s at risk.
This is not guaranteed for work.
Fear only provides brief motivation for the patient to take their medication, but that motivation will leave the patient by the next week, in the same manner that the fear will.
If patients can be taught how to be disciplined with taking their medication, to set up a system of reminding that never fails, then the patient has a much better chance of adhering to their medication consistently. If the patient can develop autonomy over their treatment by making a plan about it, taking power over the decisions available to them, and hopefully continuing to learn more about glaucoma, then the patient will truly be their own best advocate.
Which leads to my work in glaucoma clinic for the duration of my internship. How can a small group of hospital staff help patients at least begin a plan to adhere to medication? How can patients feel empowered and in control of their treatment in the brief time that they spend in the clinic? How can a patient be informed of the consequences of progressing glaucoma but given the tools necessary to take control of their treatment and blaze a trail to controlled glaucoma?
These are all questions I’ll be focusing on for the near-future. But they’ll probably also stay in the back of my mind for the rest of my career.