I have thought a lot about the role of a neurologist in Zambia as I approach ten years of living in the country. It is easy to make the argument of a neurologist's value in this setting when a patient has a good outcome. Examples would be an epileptic who no longer has seizures when placed on proper medication or a patient with a brain abscess that disappears with an adequate regimen of antibiotics. However, many patients have poor outcomes regardless of the correct diagnosis. Examples would be patients with brain cancer, dementia, or another neurodegenerative condition. I would argue that a neurologist provides a valuable service for these patients and their families as well.
Several years ago, I heard Dr. Marc Patterson, Chair of the Division of Child and Adolescent Neurology at the Mayo Clinic, give a grand rounds presentation on his area of expertise, a relatively uncommon condition called Niemann-Pick disease that has a fatal prognosis. He mentioned that his role is often simply ending the diagnostic odyssey for families. Parents often spend months, even years, trying to gain an answer for why their child has been suffering. This can result in lost time at school. It also results in parents losing time with other children in the family. There is also a significant financial burden associated with the search for a correct diagnosis.
The same situation plays out in Zambia on a daily basis with even greater consequences. Nearly all the patients at the University Teaching Hospital have a friend or family member that will stay at their bed side for the duration of the hospitalization. This may be for days, weeks, and even months. This takes an emotional and financial toll. The caregiver is the one responsible for bathing, changing, and feeding the patient. This is often a healthy member of the family who is clearly not able to work often resulting in lost income.
Early in my time in Zambia, I diagnosed a patient with ALS or Lou Gehrig’s Disease. This is not a diagnosis any physician wants to make because it is nearly always fatal. It is a straightforward diagnosis for a neurologist to establish, simply by using the history and neurological examination. During the course of the ALS patient’s evaluation, he ended up getting a brain MRI scan. This test was expensive and totally unnecessary given the ultimate diagnosis. However, this patient had presented prior to the start of our training program and the physicians who saw the patient did not have the expertise to make the diagnosis. This lack of clarity resulted in extensive testing in search of the diagnosis. An MRI scan costs $200 in Zambia. This is a significant amount given the per capita income is ~ $4000. Patients without means will be asked to contribute some money towards the MRI and can sometimes get a full exemption. Some patients are able to mobilize the resources to pay the full amount.
It was gratifying to make a diagnosis and provide a realistic prognosis to the patient and family. The patient should have been at home at least one month earlier with palliative care. As is the case with most all ALS patients, outside of comfort care, there is little to offer in the way of treatment. At the very least, our team was able to send the patient home and stop any further spending of their limited resources. We were all happy to end their diagnostic odyssey.