Cultural Barriers to Care

Today was our first experience at Dora Nginza hospital, another public sector facility with about 500 beds. Dora focuses mainly on pediatrics patients, but they also have an extensive burn unit (because of the high fire rates in the townships). Compared to Livingstone, its a palace. Even though its still within in the public sector, the facility is newer, less chaotic, and there are fewer people roaming the halls (most likely due to the high pediatric patient population). From one day in the hospital, we can already tell that the nursing staff and the doctors are more willing to work with us. And it seems much more sanitary than Livingstone hospital. In fact, you MUST wear the specialized tuberculosis-proof face masks when on the general medicine wards, because they have "a higher rate of TB" than Livingstone, although they do manage to have their drug resistant TB patients in isolation, which doesn't happen at Livingstone. Its both worrisome and encouraging that the masks are required (what have we already been exposed to vs. available precautions at this hospital). That being said, none of the students that have done this rotation have come back with a positive tuberculosis skin test, so the risk is low..but still, its concerning. 

Since rounds were not organized today with the pediatric attending, we spent a long time talking to another Pharm. D. candidate from Rhodes University (already has a B.S. in pharmacy) about the cultural aspects of South Africa. Despite what we've been thrown into already, we surprisingly weren't given a cultural introduction at the start of the rotation. 

Lets start with the basics. We've heard a lot of terms since we got here about race...black, African, coloured, white. Of course with our American history, we think of "coloured" as being black (knowing, obviously that the term's use is not accepted anymore); so we needed some clarification. So black is traditional, full blooded African descendants of the original inhabitants of South Africa (like Bushmen, for example). White is of Dutch or British decent. Coloured is any one who is "mixed race," and is a very accepted term, not having the negative stigma that it has in the states. Apart from patients telling you that they are one or the other, there's no real way to tell. And guessing can be dangerous, since Xhosa and Zulu populations are "at odds" as you could say, so mistaking a Zulu for a Xhosa could be offensive. Coloureds and blacks often live in their own, separate neighborhoods, the townships being mainly black populations. "African" terminology is difficult, however. Often times it seems that only the black communities are referred to as "African" because of their ancestry. But then sometimes its referred to coloured or black people. From my perspective, it seems like the definition varies from person to person, but that's just conjecture (also, aren't they all Africans???). Xhosa is the language predominately in the black population, where as Afrikaans is more common in the coloured and white populations.

I feel its important to make these distinctions, because its easy to inappropriately extrapolate our own cultural characteristics onto their population. They even do it to a degree. For instance, certain drugs and American trials detect different efficacies or side effects in African-Americans versus Caucasians. They extrapolate the findings in the African-American populations to their African population (and whether that's every one or just the "black" population, I'm not sure). This could be completely inappropriate, as I can imagine the genetic make-up of our black population to be very different from theirs. Who's to say that the genetic make up of Kenyan's is the same as South Africans or Namibians? Its seems like an even further stretch to say that those who have been in the Americas for generations would still have similar genetic influences that change how they react to drugs. Anywho, their reasoning behind extrapolating the evidence is because it is unreasonable to believe or expect there to be major drug trials in South African populations due to costs (and in the interest of "where to spend the money, SA or America"). It is understandable, but just highlights another way South Africans are disadvantaged. 

Education remains a major inconsistency throughout the population. Prior to the transition form the apartheid regime to the democratic system in 1990, most coloured and blacks were not allowed to attend school. There were schools for them, which of course would have been separate from whites, but it was not common. So now we stand 18 years out from the full transition from apartheid, which means that only those about 18 or younger have received primary and secondary education. Most of our patients are older than that, meaning their education level is minimal. They are most likely illiterate, not being able to read English or their native Xhosa. What's even more hindering is that all children have to pay to attend primary and secondary school (elementary and high school). So families have to make a choice, pay for kids to attend school or have them work to provide for the family. This is probably the reason you can see so many children begging in the streets instead of going to school (we were told they're learning to grow up as beggars instead of productive citizens...).

With illiteracy also comes health illiteracy, which can help to explain the high rates of HIV seen here. Many things are written in English, and if patients can't read Xhosa, let alone English, its easy to get confused. Another complication is that there are many Cuban doctors here, meaning that the only language they can speak in English; patients often time just plain don't understand their doctors. Cultural beliefs also come into play and are barriers to care. For instance, in Xhosa culture polygamy is common and condoms are seen as "unmanly." Also, traditional healers believe epilepsy can be "beaten" out of someone; or diabetes is a result of something getting spread around your house, and that you stepping over it causes diabetes, which can be healed by a shaman of sorts (I forget their name for it).

The most dangerous cultural belief I had heard of before coming to Africa, but I was under the impression that it was only in small African tribes and not a widespread issue. Many natives believe that having sex with a virgin or a baby can cure HIV. This is why South Africa, and especially townships, have such high rates of rape. Its unimaginable that these beliefs still hold true in today's society, and they compound the other health literacy issues at hand. 

Even the government plays a part; HIV patients are given a stipend from the government for health care related costs (appointments, trips to pharmacies, etc). The stipend is dependent on whats called a CD4 count. Let me explain-- the CD4 count is a measure of the immune system destruction in HIV. The lower the number, the more likely the patients are to get opportunistic infections, which very frequently lead to fatal complications. The higher the number, the healthier the patient is. HIV medications, if working effectively, will increase this number. When CD4 counts are less than 200, 100 or 50, the patient is at a much higher risk for serious infections, and their medication and medical care burdens are higher. What the government has done is give patients with a CD4 count less than 200 a monetary stipend. Once the CD4 count goes above 200 (i.e. the patient is healthier), the stipend is revoked. So for patients that are very impoverished, as the majority of the population is, there is essentially a benefit to stay sicker. I believe this can relate to the US when people have schizophrenia or other mental conditions, or when children qualify as special education, they receive funds from the government. While its use is to improve the lives of those who are more disadvantaged, often the reality  is contradictory to the patient's health, education, or mental well being.

Its easy for us to try and suggest ways to improve the transmission rates of HIV, get patients be compliant with their medications, or have them come to their follow up appointments, but with a culture as diverse, complicated and hindered as this population is, its impossible to start from the health care system. Change needs to happen from primary school into adulthood. Only when the stigmas and taboos about HIV are abolished at a very young age, starting in primary school and continuing into adulthood, can South Africa attempt to make any leeway on their battle against the disease and its devastating effects on its population.

Stop laughing at me!

It’s very hard to get used to the humor in South Africa. They do it with such a straight face, you have no idea if they’re crazy or serious. When we arrived to our hotel in Cape Town, the employees at the desk told us they had no available room, and they didn’t have our reservation. Just as I was about to shit my pants and yell at Carmen who booked the trip, the ladies laughed.


At the top of Table Mountain, we stopped at a café to have some coffee and cake (since the visibility was absolutely ZERO, there wasn’t much else to do). Then an employee of the café asked to take an empty seat and wanted to know if we’d buy her coffee. Thrown off by the abrasiveness of an employee asking a customer to pay for her coffee, we didn’t know how to respond. She kept a straight face and continued the gig for about 5 minutes. Then she laughed and gave it up.

We’ve also had some weird experiences, not jokes, but weird questions from the natives. While checking out at the grocery store, the cashier asked me if my eyelashes were real. Then some hotel employees in Cape Town asked me if “those were [my] own eyes.” Wtf. How would I have someone else’s eyes? She asked if we wore colored contacts, but still….what a weird question.

Then to top off the weird experience, at Table Mountain there was this large group of noisy Thai tourists. We were a bit standoff-ish to begin with, since they were yelling and chanting cheers when they got in the cable car. But then they asked us to take a photo with them. Actually, they didn’t ask to start out. A lady just stood next to me and a guy pointed a camera at my face…then they asked me. Then on the way down, we literally had our picture taken 15 times by members of this group. We kept thinking…do they think we’re celebrities? Then the group leader told us they like taking pictures with foreigners. I just couldn’t imagine how people would react if I asked to take pictures with complete strangers. Well, I’d know how they’d react; they’d feel like animals at a zoo. Sooo awkward.

Even more awkward when they attempt to sing Country Roads after we tell them we’re from West Virginia. Lucky for us, they didn’t get too far into the song before they forgot the words.

Besides their odd humor, South Africans surprise me every day with their friendliness and kindness. Definitely refreshing, even though I think many of them take us as more foolish than we actually are, which can be frustrating. Whether its "yes, we have free internet," or "yes, this is a 'complimentary' ride," or "yes, this cab ride will only cost you 50 rand." I'm not sure if they mean to do it, or if its just rude to correoct people here. Makes for some interesting surprises, to say the least.

Code Blue?

Before we applied for this program, we were warned that if we could not handle being in the midst of hardship and frequent death, than this was not the rotation for us. This week, we have been unlucky enough to witness what they were talking about...

The week began interestingly in Sarah's ward. Both Rachel and I could hear one of her patient's breathing from our wards. Sarah had to ask a sister to start a nebulizer treatment so that the patient could breath. The lady was so distressed that when she tried to pull herself out of her bed, she yanked her IV line out. Sarah informed the nurse, who put a bandage over the bleeding wound, but did not replace the line. Less than an hour later, the patient had to be intubated for oxygen saturations in the 60%s (about 98% is normal). One new doctor and two sisters attended to the "code," and hooked the patient up to a EKG monitor and defibrillator. When the patient coded (went into arrhythmia and needed to be shocked), the sister could not find a good vein in which to administer epinephrine.

The doctor attending the call looked as though she could have been having afternoon tea. Her lackadaisical bag breaths were enough to make me and Sarah want to jump in and take over. When the pulse was lost and the CPR began, Sarah says the doctor was making such weak attempts at compressions that she knew she could've done a better job. After 6 rounds of CPR (about 2 minutes), they called time of death.

 It was an unfortunate death, not only because of the seemingly apathetic code team, but also because the patient should have had a new IV line placed the moment she pulled hers out. The worst part of the whole experience was when the husband came by to see his wife shortly before CPR began. Not even knowing the patient's loved one was standing behind her, the doctor called the ICU to began a transfer. Wanting the physician to acknowledge the husband, I said "Doctor, Doctor." She did not hear me. Minutes later, the husband had been informed that his wife had passed. It was a very hard first code for myself, but more so for Sarah as she was more involved. The hardest thing was to know what could have been done, and what should have been done. It was sad to see that considered a "code blue."

Later in the week, Rachel had two dead patients when we arrived for rounds in the morning. Both of their bodies laid there for hours before being moved from the floor.

Today, the patient I have been following the closest took a turn for the worst. She is a HIV patient with severe, disseminated tuberculosis (widespread, outside the lungs) with acute liver failure. I presented her cause for my formal presentation, so I have spent many hours looking over her case. Over the past few days, I've seen her deteriorate to the point where she could not hold a bottle of water or move her legs on her own. This afternoon, I decided to check up on the patient to see what changes that doctors had made to her therapy. During the physician's examination, we realized her hands and feet were ice cold to the touch, and her nail beds and feet were blue. She could barely hold her head up and her eyes were not focusing. I suggested starting fluids, so the doctor attempted and failed to get an IV started. The patient was obviously in shock (low perfusion which can lead to multiple organ failure) and needed fluids immediately. Only one sister was qualified to place a central IV line (in the neck), but she could not be found. I asked the doctor if she could place one, and she said yes, but she was feeling a bit "hypoglycemic" and needed something to eat.

The audacity of these physicians to not take a patient like this seriously is infuriating. What's more infuriating is that fact that this patient had signs of dehydration for weeks (had a very fast heart rate, in the 140s, 150s when normal is less than 100). She should have been receiving fluids daily, but instead she had no IV line. And when a patient is in shock with ice cold extremities she is unable to mood, it is NOT an appropriate time to get a snack. To add on to everything else, she is not a candidate for the ICU because she is HIV positive and has tuberculosis (they will not admit any one HIV positive, who has active tuberculosis, or anyone over the age of 65 to the ICU; their survival is just not important enough to them to waste the resouces).

I have become quite attached to this patient. I had to leave for a meeting during this crisis, so I'm interested to see if the patient has received any fluids in the morning...or what's more realistic, is to see if she's even still alive.

South African Culture

Our work here is so overwhelming, I've forgotten to even talk about the culture of SA'ns. The people here are extreeeemely nice. We can't go to a gas station or a restaurant without someone asking where we're from or what we're doing. They seem to be a light hearted people, who aren't afraid to joke around with you (although it may take a minute to pick up on it..they're very sly with their flat expressions). There are two very different extremes in the economy here, a remnant of their apartheid segregation still lingering. The shanty towns, or townships, are communities of black populations. Shacks upon shacks upon shacks make up the colored hillsides, where some people go without running water in their house, and house fires are quite common. Some of the townships are left over from the townships developed during the apartheid, while others have popped up since. They are a stark contrast to the swanky, new age restaurants, malls, and shopping centers that are also common here.

Although almost everything is written in English (menus, road signs, government documents, etc), there are eleven official languages in South Africa. After the apartheid Nelson Mandela and his governments recognized all languages, and required there to be education opportunities in each available language. If you grow up speaking a language, there will be a school that teaches it--it may be on the other side of the country, but it is available. The three most common languages in the Eastern Cape, where Port Elizabeth resides, are Afrikaans (a derivative of Dutch), Xhosa (one of the languages with "clicks" in it), and English. While English is my far the most commonly spoken secondary language, it is rarely a native tongue, or the language people grow up speaking in their houses. Xhosa is more common within the black communities, while Afrikaans, having derived from Dutch, is more commonly spoken with the white citizens. 

The extremes in this culture are hard to ignore as outsiders, but it seems as though many residents feel the burden of the struggling economy and hardships of the working class. Twice we have had people tell us how much they'd like to come back with us to the States, and two others have told us how much they want to leave South Africa...that almost anywhere else in the world would be better. Although the quality of life for many residents is close to what many American's experience, there is a large majority that are living in substandard conditions and, of course, receiving much than less than standard health care.

The State of Care

Even when I think I’ve seen it all, I haven’t. It’s amazing the things we take for granted with health care—wearing gloves, for instance. I haven’t seen one nurse or physician wearing gloves. Perhaps in the CCU (ICU), but not on the wards. So when patients with HIV, tuberculosis, bacterial meningitis are physically examined, have blood taken, sputum collected, injections given or dressings changed, the nurses (or sisters, as they are called) do not wear gloves. The sisters are interesting; they try to be kind but it seems to cause them great pain to answer any of our questions (i.e. why did that patient die? Or how do I call the lab? Or my favorite, the patient over there may be having a heart attack, do you think you could give her some nitro?). They complain about being overworked, which undoubtedly everyone in the public sector is. However, patients regularly miss medications—their omission rate is somewhere around 60%. For comparisons sake, I’d say ours is somewhere in the 10-20% range on a bad day. Patients that should be receiving 3 bags of fluid a day receive none (of course, there are no infusion pumps to speed up the process even if they did). Everyone is catheterized so that they don’t have to attend to them as often, which often leads to patients pulling them out. Renier warned us on our first day to wear closed toed shoes because it’s not uncommon to have a bag of urine leaking on the floor after a patient has pulled their catheter out.

Another interesting thing happened today. I was reading a patient chart when a nurse came to take blood (again, gloveless). Before inserting the needle, she laid it on the patient’s bed, uncovered. Now mind you, these beds are not like our beds. They literally have blankets and comforters on them—there is no standard bedding. It looks like everything has been donated, which I’m not totally uncertain it hasn’t been. So in addition to the general lack of aseptic technique (nurses spike the IV bags on the floor, not under ventilated hoods in clean rooms like we do, and certainly without first wiping it down with alcohol), the bedding could potentially be covered in coughed up sputum, a patient’s urine which she decided to cover up with a blanket and lay back down on, or layers of scratched off psoriatic plaques (yes, all of these things have happened).  Since the sisters are so “overworked” it’s not uncommon for these things to go unattended for the majority of the day. Needless to say, I was shocked when she continued to stick the patient with the needle.

Not only are gloves few and far between, but hand washing is probably just as rare. There are sinks abound in the wards, but with nothing to dry your hands on, I think the sisters are just “too busy” to worry about such things. I also can’t forget to mention that actively infected tuberculosis patients are not in isolation rooms as they would be in the States. In fact, even their multidrug resistant and extremely drug resistant tuberculosis patients are not in isolation (even though they are supposed to be, even there) because there just isn’t enough space.

Space. Resources. Physicians. These are all things that are incredibly lacking in this setting. During our initial tour of the hospital, Renier took us through the “casualty” floor, which is their emergency department. He said on a good day, there would be people sitting on the floors waiting to be seen or admitted. It’s not uncommon for a patient to arrive at the hospital on Monday and not be fully worked up and admitted until Thursday (so next time we complain about a 3 hour wait in the ER, maybe we should be thankful instead). The thought of patients piling up on the floors due to lack of space is enough to make me nauseated. The scarcity of physicians in the public sector only compounds the problem—they keep leaving in hoards because they are mistreated and underpaid by the government. In fact, it’s not uncommon for doctors, pharmacists, or sisters to go months without getting paid.

The thing that frightens me most is what happens when a patient dies in the wards. We have been lucky enough not to have witnessed this yet. However, Renier tells us that when rounding at 7am, before the sisters have attended to the patients for the day, we may find a patient in her bed that has expired the night before. I can only imagine if I were lying in a hospital bed and in the middle of the night, heard my neighbor, whose bed is three feet from mine, gasping for air and no one comes to check on her. These patients are not monitored, so unless they yell out (which the often do to no avail) or a sister just happens to be in the same room, they may die and go unnoticed for hours. And whereas we would have a formal write up on our demise (“patient died of cardiac arrest after three rounds of defribrillation, epinephrine, and 20 minutes of CPR”), these charts will read….

“patient found dead this morning.”

No explanation given.

New adventures mean more first impressions

I’ll be honest—when I learned I was not accepted for the exchange semester abroad in Murcia, Spain back in undergrad, I thought my last opportunity to spend a generous amount of time in another country had slipped through my fingers. If I had decided to major in foreign language, international studies, business, history, etc…I figured I’d have plenty of opportunity. But I chose pharmacy, which was the nail in the coffin of my international experiences. Or so I thought.

My first unforeseen opportunity was my adventure in Spain, which in itself was a life changing experience...simply because I had dreamt of living there for years. Now I’m in South Africa working with HIV/AIDS and tuberculosis patients every day. How I got so lucky as to stumble into two opportunities to not only travel, but travel while gaining insight into the profession I am passionate about---I’ll never know.

More than a week has gone by in Port Elizabeth before I’ve written my first post, so I’ll try to skip over the fact that it took me four days to get a working cell phone, a whole week to get internet functioning at our apartment (where the breaker box regularly needs flipped when we plug in the toaster and the coffee pot),  the maid steals our clothes (okay, she doesn’t steal them, but she does take two days to wash them), learning to drive on the wrong (left) side of the road, and most evenings the first week were spent catering to the schedule of our preceptor's work day so we could do topic discussions via Skype when he was available (despite all these issues)….and I could go on. But like I said, let’s get to the good stuff.

As a briefing, the health care setup varies a bit from the States. Those who can afford insurance (or “medical aid” as they call it) can visit hospitals in the “private sector,” while those who do not buy it (assumed to be those who cannot afford it) must go to hospitals in the “public sectors,” which are completely funded by the government. As of yet, the four of us have only visited the public sector. From what I understand the private sector hospitals are very similar to what we have in the States. But the public sector…..is a different world entirely.  

Even from the first glance of the entrance, where the metal letters are gone and one can only read the words “Livingston Hospital” that have been faded by the sun, it was easy to assume we were in for a whirlwind. Walking into the hospital was like walking into a nightmare. First of all, the smell is indescribable. Whereas hospitals in the States generally smell like cleaning supplies, this hospital smells more like a microbiology lab overtaken by bacteria. If this building were a school, I wouldn’t send my child there. Everything is run down and the elevators are “use at your own risk.” The ICU, or the “CCU” (critical care unit), is the only place that somewhat resembles an average hospital. Constant monitoring of blood pressure, pulse, oxygen saturation and individualized nursing staff—it actually almost runs like we would expect it to.

The wards, where the three pharmacy students are reviewing charts, would generally be ICU patients in the States (or so our South African Pharm. D. student, Renier, tells us). And I’m very literal when I say we review “charts.” Everything is still kept on paper. Instead of having all the information charted electronically (and more importantly, legibly), all the information for the patient is kept bedside in a raggedy old folder that you’d see in a clinic. Nearly every other patient has HIV, AIDS or tuberculosis, and most have both. And these aren’t just any HIV patients….they’re patients who were diagnosed with complications---caught way too late. We’re seeing things like cryptococcal meningitis, PCP pneumonia, milliary (disseminated, or literally  “everywhere”) tuberculosis, and other opportunistic infections we rarely get to see in the States. So these aren’t just HIV patients. They’re deathly ill HIV patients. Deathly ill HIV patients who are lucky to get all their medications in a day and who rarely get more than one bag of fluid  given to them even if their blood pressure is bouncing around 90/50 with a heart rate in the 140’s (for all you non-healthcare people, that means dangerously dehydrated).

Every detail of the public sector’s health care scares me, especially when we are on the verge of healthcare reform being touted as “healthcare rationing.” I hope for the sake of us all that we never get near something as frightening as what we are seeing here. God help the less fortunate if we do.