Family Ties: Reflections on a Clinical Rotation in Lusaka, Zambia

Katie Holroyd, M.D. 

Partners MGH/BWH Neurology resident, 

PGY3

12/09/2019

Lets talk about family. I grew up an only child in the small town of Athens, Ohio. I have no siblings, and despite having five aunts and uncles, I also have no cousins. While I love my parents very much, this often made for extremely boring Thanksgiving dinners growing up, in which I was the only human under the age of 60 in the room. My mother, having cared for her mother who passed away from Alzheimer’s disease, has told me on numerous occasions that she does not want to ever be a burden to me, and to “put them in a home” at the first sign of ill health. While the latter statement is always tinged with humor, I believe her underlying sentiment is true: she never wants her old age or ill health to put limitations on my life as her only descendent.

Katie Holroyd and Anastasia Vishnevetsky stand outside
University Teaching Hospital in Lusaka, Zambia

Ok, so what does this have to do with Zambia? I traveled here for a one-month clinical rotation in Neurology at the University Teaching Hospital (UTH) in Lusaka, Zambia My initial underlying goals were two fold: to experience the practice of neurology in a lower resource setting, and to increase my exposure to neuro-infectious diseases with the goal of incorporating this into my fellowship following residency graduation.

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The wards in Zambia consist of several bays, or open walled-off areas in one very large room. Each bay has from 8-12 beds next to each other, invariably always at or above capacity. Almost without exception, every patient is accompanied by a family member at all hours. While this makes for an extremely crowded work space, I have come to find that it is absolutely necessary in order for medical care to progress in the hospital. In the US, family visits are for exclusively that: visiting. Families are not expected to participate in basic care for the patient, provide supplies, or assist in obtaining diagnostic procedures. In Zambia, families must do all of these things, and perform almost all of the duties that nurses and nurses assistants do in the US.

At UTH, families must provide their own bedding for the hospital, and the outside of the hospital is covered in drying laundry on any sunny day.

They also provide all of the food for the patients, and bedside cabinets are filled with fruit and bowls of nshima (the local porridge eaten with each meal). In patients who require a nasogastric tube for feeding (which is quite a few of the neurology patients), families are even responsible for providing, preparing, and administering all food through the tube.  In order to provide this 24/7 care, families often roll out mats and sleep next to their family in the hospital, or even on the concrete pathways outside of the building.

Laundry hangs out to dry at the Hospital. Patients' Families must
supply and clean all of their own clothing and bedding. 

In addition, with the computer-less system here, families are often required to walk to the laboratory to request printed test results, travel to radiology to request disks of CT scans, or go to an outside pharmacy to purchase medical supplies such as the aforementioned nasogastric tubes. While some medications are free for families in the hospital, the hospital pharmacy has a much smaller selection of medications than are available at private pharmacies. Imagine my horror as a neurologist when I learned that the hospital was out of aspirin during my first week here! As a result, many of the medications we prescribe (from vitamins to blood pressure medications) are dependent on families to travel to an outside pharmacy and pay to purchase the medications and bring them back to be administered. Similarly, the hospital lab is often out of reagents for lab tests even as basic as electrolytes, and families who have means are asked to manually carry tubes of blood to a private lab to have tests performed.

Family members at the bedside are especially crucial for neurology patients who are often unable to talk or move on their own. Families are not only responsible for basic daily nursing care such as turning bedbound patients or helping patients up to use the bathroom, but they also provide much of the medical history during our interviews. In a culture where hospice and care withdrawal are not accepted or discussed, families also provide all care for patients at the end of their lives (see blog post #2 for more thoughts on this).

Finally, in a place where “long term care facilities” and “nursing homes” or “acute rehabs” really do not exist, families often take patients home who are completely dependent for all their needs. I have never once had a family question how they would care for their hemiplegic, mute, or even minimally conscious relatives at home. It is simply accepted and expected, and families often provide very good care for these relatives at home who return to clinic well fed and without bed sores. I now understand why many Zambians have upwards of 7 or 8 children—without them you have no care network.

This culture does not stop with a patient’s direct family. Rarely a patient visit goes by without the neighboring patient or their family (often only about 1 foot away separated at best with a thin curtain) chiming in on the history, helping with translation, or assisting in recounting lab or imaging tests results. While in the US this would be deemed a horrifying breach of privacy (ie HIPAA), this has resulted in many positive changes in patient care during my time here at UTH.

If patients do not have family, they are often stranded at the hospital for weeks or months relying on hospital staff to provide care that is much less thorough than would be provided by a loved one. If they do not have family to care for them at home, they are eventually discharged to one of very few “hospice” facilities that exist in Lusaka.

I hold deep respect and admiration for the families and patients that I have met in Zambia. Does this mean that I am going to take leave and care for my mother 24/7 if she should be hospitalized? I think the answer remains no, but I hope that I can bring some of the selflessness, support, and kindness that I have seen in Zambia back to the US.