Time is a funny thing, it seems like just yesterday that I arrived in Malawi; yet my first day, when everything about Lilongwe was foreign and new, seems like such a long time ago- a distant dream. In two months the guesthouse became my home, its inhabitants my family; my coworkers became good friends and KCH and the Baylor clinic became familiar places of work. Simultaneously, throughout the summer I remained an outsider in Malawi and never ceased to be shocked, awed, horrified and amazed by my everyday experiences. Time is also funny in the way that it flies by. I wrote the below as I was flying out of Lilongwe, but haven’t had time to sit and reflect in order to complete my final entry until today, August 22, a month after my departure:
This will be my final blog entry for the summer, as my work at KCH concluded on Friday. I will now be traveling to Tanzania where I meet my parents for ten days of safari before traveling to England and then home to start second year of medical school! When I try to summarize my summer, what I learned, how I changed, what my impressions are I find that there is no concise answer largely because there is no consistent answer. In 48 hours in Malawi I went from correctly diagnosing a child in sickle crisis (when my attending initially disagreed with my conclusion), to spending hours at the guesthouse after work feeling bored and confined, to meeting President Clinton, to seeing children die in the clinic. Beyond highs and lows, this summer was marked by contrast: boredom and overstimulation, joy and horror, the list goes on and on.
Even a final status update of my work is troublesome. I successfully completed final drafts of all of the enrollment forms and constructed the data dictionary which will be used by UNC database developers to collect and organize data. It is hard to explain how five 5-page Word documents, and five Excel spreadsheets feel like a full summer’s worth of work. Creating these documents was at times mind-numbing: reformatting, rewording, re-numbering- the subtleties and details to attend to were endless. Yet these forms in all of their minutiae were important. In working on the ground level of the study, it was essential to get all of these elements right so that the data collected once enrollment begins can be meaningfully analyzed. It may seem a stretch, but I truly believe that I was able to contribute to the study by creating these forms. (To those who are incredulous, believe me, I have had many doubts about how meaningful my contributions to the project were and are.)
A month after my return when I reflect on what I have taken away from my experience in Malawi contradictions continue to abound. When people ask me how my summer was my first answer is always “Great! I had a wonderful time!” and then they ask what I was doing…and I get flustered because how do I explain that I was working with HIV-positive infants all summer and having a wonderful time? The truth is that often, in the moment, I wasn’t. It was often painful, frustrating, and humbling work. Yet I am so thankful for this opportunity to see the non-glamorous, non-Western side of medicine. I believe my work this summer helped me appreciate what is truly at stake when I say I want to be a doctor. It helped me understand the value, fragility and transience of life. More importantly (for a budding M.D.) my experiences helped me understand that physicians are alternately uniquely empowered to save lives and utterly powerless against the host of diseases, aging processes and accidents that the human body is subject to.
By taking on this profession I feel that I am becoming even more mortal, even more vulnerable to these forces. As a doctor your job becomes part of who you are; to me, my potential to be a good doctor is already inextricably bound to my potential to be the best ‘me’ that I can be. That means I am volunteering to subject not just my body, but my esteem and my psyche to the onslaught of disease, age and trauma. I am training to spend my life battling back these forces, and more often than not (as we all die of something), I will lose and will have to accept these losses so as to help my patients do the same.
When I consider the question of whether I would like to do something similar in the future and my advice to others who plan to do similar work abroad a variety of answers and an even greater abundance of questions arise. First and foremost, my answer is yes, I had an amazing and intense and growth-provoking summer that solidified my desire to do similar work in the future. Furthermore, I would certainly recommend such an experience to other medical students. There are, however, many caveats to that answer.
The first and most important caveat is that when working in a resource-limited setting I think it is imperative to consider the resources you consume in contrast to the services you are able to provide. Often American students are congratulated for their giving spirit when they travel to the ‘developing world’ to ‘volunteer’. Personally, I am under no illusion that I contributed more than I consumed this summer. What I hope is that this experience will form a cornerstone of my medical education that will allow me to provide better care for my current SHAC HIV clients and for my future patients, wherever those patients may be located.
In terms of recommendations for students who are interested in similar work, I would say the two most important keys to success are to find a mentor and, above all to be flexible! I was assigned my mentor, so I can’t take credit for, or offer much advice on, finding a good mentor. I can share are the qualities of this relationship that I believe were critical to the project’s success. My mentor and I shared the same set of values and basic viewpoints on academic medical work in the developing world. This was important because I was confident that he wouldn’t put me in situations where I felt my values were being compromised. We also saw eye-to-eye on goals for the summer, and while my mentor was happy to work with me to set goals, he was also great at challenging me while offering resources for support. He allowed me to work independently, but made sure that I knew where to go if I reached impedance.
In terms of being flexible, there is no set of instructions I can give on how to be flexible (speaking of contradictions!) I find that for myself, being humble helps me to be flexible. The project didn’t get IRB approved until after I left Malawi, which meant I wasn’t able to work on patient enrollment. This was disappointing, but I don’t posses some set of patient enrollment skills that were critical to the project. I was able to contribute in other meaningful ways and learned a lot doing so.
When I would set up meetings with people in the hospital more often than not, they didn’t show up. The second best option was that they were at least 45 minutes late. Again, this was frustrating, but I had a summer off; I had time to wait around. If my meeting was with a counselor or clinical officer or physician there time was more valuable than mine. Moreover, being open to learning from observation allowed me to use the hours I spent sitting with patients in waiting areas of the hospital to consider the healthcare system from the patient’s perspective, to learn more about family dynamics, and to reflect on my daily experiences.
It is difficult to sum-up my two month experience in Malawi (hence the length of this post.) In closing, I would just like to express how thankful I am. For the financial support of the UNC EPS Fellowship Program and Carolina Medical Student Research Fund; for the emotional support of my family, my friends and my adopted guesthouse family; for the academic support from the UNC ID and UNC Project faculty and from the Baylor Pediatric AIDS Corps physicians and clinical officers; and for all of you who followed my summer of adventure through this blog.
After a week of classes as an MS2 I find that this summer left me feeling revived, ready to take on another years worth of medical school. Somehow, from all of the chaos, the joy, the pain, and the heartache I witnessed and experienced this summer I have been able to find an intangible peace and resolve which are the most significant things I have taken away from this experience. So to all who made this possible, zikomo kwamberi (thank you very much).
Showing posts with label Kamuzu Central Hospital. Show all posts
Showing posts with label Kamuzu Central Hospital. Show all posts
Sunday, August 22, 2010
Sunday, July 11, 2010
Resistance to Change
Those of you who know me know that I can be very resistant to change. When my parents wanted to get rid of our 18-year-old worn, stained, crayon-graffitied coffee table I was so upset I insisted they store it for me; it now sits in all of its glory in my living room. I am still reeling from the change of management in the Health Science Library coffee shop and have resorted to returning home for my afternoon coffee rather than buying the new coffee from the new baristas.
This is all to say that I am sympathetic to individuals and institutions who do not wish to undergo dramatic transformations or systematic restructuring. Yet one of the most frustrating aspects of working at KCH is the staunch refusal to change inefficient and often broken systems. This has been a common frustration amongst the other medical students working here. Two years ago Mariah implemented a program to help better support the guardians at KCH. When she met with the hospital director this summer he had never heard of this program despite guardians being a constant problem for the hospital.
Similarly, Timica is working in the hospital lab, and planned to spend the summer doing an analysis of whether the lab tests offered at KCH were those that were clinically relevant and assess clinicians’ knowledge of what lab tests are available. Yet when she arrived it was made clear that the administration was not interested in this study, and moreover was not interested in implementing any changes based on its results.
The study that I am working has thus far been well-received, but I realized on Friday night that my study is a response to resistance to change. One of the UNC undergrads was asking me about my work here, and when I told her that we were investigating alternatives to the DNA-PCR test currently used to diagnose neonates she didn’t understand why an alternative was needed. I explained that the DNA-PCRs take at least a month to get results from the lab, and that a benefit of the p24 antigen test is that it can be done at point-of-care. The student responded by telling me that DNA-PCRs should be able to be done within a week, and she didn’t understand why changes couldn’t be made in the lab to deliver DNA-PCR results more efficiently.
Though I have previously written about this issue in my grant applications and read about it in the IRB proposal this was the first time I really understood the ridiculousness of the situation that precipitated our study. The probability of the hospital lab initiating changes that enable efficient delivery of DNA-PCR results is so low that it is worth immense amounts of time, money and effort to do a new study on a test that will essentially circumvent the lab all together.
Yet even in these frustrating situations I find it a fine line to walk to be honest and critical of the hospital and it’s administration without being ethnocentric and close-minded. How do foreign students and professionals in Malawi work to identify weaknesses and improve on them without undermining the authority of the KCH administration? How do physicians balance the immediate need of patients with the need to respect their Malawian colleagues and create a sustainable system based on Malawian expertise and commitment?
I think the answer to these questions lies in humility and cooperation on both sides. Just because we have one system in the U.S. does not mean implementing the same system here is the best course of action. Conversely, simply because the KCH lab has followed certain protocols for years and years does not mean these protocols are not without fault. Yet these lessons are easier said than learned, I will try to remember when sipping my home-brewed coffee at my stained coffee table while the rest of my class enjoys Magical Mochas at the clean linoleum tables of the Friends Café.
This is all to say that I am sympathetic to individuals and institutions who do not wish to undergo dramatic transformations or systematic restructuring. Yet one of the most frustrating aspects of working at KCH is the staunch refusal to change inefficient and often broken systems. This has been a common frustration amongst the other medical students working here. Two years ago Mariah implemented a program to help better support the guardians at KCH. When she met with the hospital director this summer he had never heard of this program despite guardians being a constant problem for the hospital.
Similarly, Timica is working in the hospital lab, and planned to spend the summer doing an analysis of whether the lab tests offered at KCH were those that were clinically relevant and assess clinicians’ knowledge of what lab tests are available. Yet when she arrived it was made clear that the administration was not interested in this study, and moreover was not interested in implementing any changes based on its results.
The study that I am working has thus far been well-received, but I realized on Friday night that my study is a response to resistance to change. One of the UNC undergrads was asking me about my work here, and when I told her that we were investigating alternatives to the DNA-PCR test currently used to diagnose neonates she didn’t understand why an alternative was needed. I explained that the DNA-PCRs take at least a month to get results from the lab, and that a benefit of the p24 antigen test is that it can be done at point-of-care. The student responded by telling me that DNA-PCRs should be able to be done within a week, and she didn’t understand why changes couldn’t be made in the lab to deliver DNA-PCR results more efficiently.
Though I have previously written about this issue in my grant applications and read about it in the IRB proposal this was the first time I really understood the ridiculousness of the situation that precipitated our study. The probability of the hospital lab initiating changes that enable efficient delivery of DNA-PCR results is so low that it is worth immense amounts of time, money and effort to do a new study on a test that will essentially circumvent the lab all together.
Yet even in these frustrating situations I find it a fine line to walk to be honest and critical of the hospital and it’s administration without being ethnocentric and close-minded. How do foreign students and professionals in Malawi work to identify weaknesses and improve on them without undermining the authority of the KCH administration? How do physicians balance the immediate need of patients with the need to respect their Malawian colleagues and create a sustainable system based on Malawian expertise and commitment?
I think the answer to these questions lies in humility and cooperation on both sides. Just because we have one system in the U.S. does not mean implementing the same system here is the best course of action. Conversely, simply because the KCH lab has followed certain protocols for years and years does not mean these protocols are not without fault. Yet these lessons are easier said than learned, I will try to remember when sipping my home-brewed coffee at my stained coffee table while the rest of my class enjoys Magical Mochas at the clean linoleum tables of the Friends Café.
Monday, June 21, 2010
Impressions Part 2: Surprises
Since coming to Malawi many people have asked me some version of the same question: Is it what you thought it would be? Well, thanks to the breakneck pace of medical school I had very little time to consider what I might be getting myself into, and even less time to develop preconceived notions of how I might find Malawi or my project. That being said, I have been surprised, almost daily, by my experiences in Malawi. To alter the tone from my last post, most of the surprises I discuss here have been pleasant and/or interesting surprises and have in some cases bolstered my resolve to continue my work and to continue seeking out new experiences.
In considering two children who are treated in a Malawian hospital, both for pneumonia, one could reasonably guess that if one child was HIV-positive and one was HIV-negative the child without HIV would have the better prognosis. In actuality I can say very little about the prognosis of children admitted to KCH with pneumonia. However, what I have been surprised to find is that of these two hypothetical children, the HIV-positive child is likely to get a much higher quality of care. Moreover, in a hospital like KCH, where children die not just because of their pneumonia (or any other chief complaint), but are daily threatened by medical error, poor hygiene, understaffing and limited resources, the quality and regularity of care are essential variables in determining prognosis.
The reason for this disparity of care is that all HIV-positive children at KCH are referred to the Baylor Pediatric HIV program. This program provides treatment and care to over 2,000 exposed or infected children. If an HIV-positive child (or a breastfeeding child born to an HIV-positive mother) is admitted for care at KCH, Baylor clinicians will round on the child daily and follow up to ensure the child receives proper care. In contrast, children who do not have this high quality of care often die because they are given the wrong treatment, miss life-saving treatments such as oxygen or blood transfusions, or for other reasons not directly related to their diagnosis. Sadly, these misfortunes befall children enrolled in the Baylor program as well, but (I sense) at a much lower rate. While I do not have any scientific data on these care discrepancies, from what I have seen, they can truly make the difference between life and death.
A second surprise (and to be honest, the one that has been personally most surprising) is how much I like pediatrics. Those of you who know me know that since starting medical school I have never considered becoming a pediatrician and have had little interest in treating kids. Yet, I have found that I really like working with the kids here. Perhaps part of it is that the parents we deal with are not the pushy, hyperattentive parents I fear having to work with in the States. Or because the kids I see are so sick that kicking, crying, and being uncooperative are, in this context, welcome signs of life rather than annoyances.
Beyond gaining an appreciation for the patient population in pediatrics, I have found myself fascinated by the field because, as I see it, pediatrics is essentially public health in action. My layman’s understanding of public health is that its primary goal is to keep populations healthy by a.) dealing with groups of people rather than individuals and b.) preventing health problems before they start. In doing so, public health deals with social justice, environmental issues, economic fairness and a host of other societal issues that are important to me.
I have found in pediatrics that in order to treat the child you often have to treat the entire family. This means not only ensuring the health of the mother and siblings (which is also essential) but also working to establish within the family a degree of social justice, a healthy environment and a sustainable economic structure in order to heal your patient. Moreover, by addressing childhood health issues you are by definition practicing preventive medicine; facilitating your patient’s growth into a healthy adult.
Examples from the past weeks abound. One little girl, a 14 year old who physically appeared to be about 8 years old, presented to an outpatient clinic months ago. She was very sick and HIV positive. A Baylor pediatrician treated her and sought out her family in order to test her parents and siblings for HIV. Surprisingly, the other members of the family were all found to be HIV negative. After building trust with the patient and her mother, the physician found out that the little girl had been sent away from the family to work as a maid. She was living with sex workers and had no adult care or supervision. Likely, the patient contract HIV through sexual assault or by becoming a sex worker herself.
Thus the pediatrician took on the work of healing the whole family in order to ensure that the treatment she gave her patient would actually work. This involved planning, with the patient’s mother, a financially feasible way to bring the patient back home. Once the child was back at home, she then taught the parents how to care for their daughter, and encouraged the mother to consider family planning so as to not conceive more children they would have to send away to work. The most recent mission was to instill in this family the value of sending the patient to school.
While this story had a very sad beginning, and admittedly has the possibility of a tragic ending, the entire family has become healthier in this process Moreover, the 14 year old girl I saw, months after her initial diagnosis, had a high CD4 count, a bright smile, and a chance to start school in the upcoming year. Without the pediatrician treating the family holistically, none of this would have been possible.
In considering two children who are treated in a Malawian hospital, both for pneumonia, one could reasonably guess that if one child was HIV-positive and one was HIV-negative the child without HIV would have the better prognosis. In actuality I can say very little about the prognosis of children admitted to KCH with pneumonia. However, what I have been surprised to find is that of these two hypothetical children, the HIV-positive child is likely to get a much higher quality of care. Moreover, in a hospital like KCH, where children die not just because of their pneumonia (or any other chief complaint), but are daily threatened by medical error, poor hygiene, understaffing and limited resources, the quality and regularity of care are essential variables in determining prognosis.
The reason for this disparity of care is that all HIV-positive children at KCH are referred to the Baylor Pediatric HIV program. This program provides treatment and care to over 2,000 exposed or infected children. If an HIV-positive child (or a breastfeeding child born to an HIV-positive mother) is admitted for care at KCH, Baylor clinicians will round on the child daily and follow up to ensure the child receives proper care. In contrast, children who do not have this high quality of care often die because they are given the wrong treatment, miss life-saving treatments such as oxygen or blood transfusions, or for other reasons not directly related to their diagnosis. Sadly, these misfortunes befall children enrolled in the Baylor program as well, but (I sense) at a much lower rate. While I do not have any scientific data on these care discrepancies, from what I have seen, they can truly make the difference between life and death.
A second surprise (and to be honest, the one that has been personally most surprising) is how much I like pediatrics. Those of you who know me know that since starting medical school I have never considered becoming a pediatrician and have had little interest in treating kids. Yet, I have found that I really like working with the kids here. Perhaps part of it is that the parents we deal with are not the pushy, hyperattentive parents I fear having to work with in the States. Or because the kids I see are so sick that kicking, crying, and being uncooperative are, in this context, welcome signs of life rather than annoyances.
Beyond gaining an appreciation for the patient population in pediatrics, I have found myself fascinated by the field because, as I see it, pediatrics is essentially public health in action. My layman’s understanding of public health is that its primary goal is to keep populations healthy by a.) dealing with groups of people rather than individuals and b.) preventing health problems before they start. In doing so, public health deals with social justice, environmental issues, economic fairness and a host of other societal issues that are important to me.
I have found in pediatrics that in order to treat the child you often have to treat the entire family. This means not only ensuring the health of the mother and siblings (which is also essential) but also working to establish within the family a degree of social justice, a healthy environment and a sustainable economic structure in order to heal your patient. Moreover, by addressing childhood health issues you are by definition practicing preventive medicine; facilitating your patient’s growth into a healthy adult.
Examples from the past weeks abound. One little girl, a 14 year old who physically appeared to be about 8 years old, presented to an outpatient clinic months ago. She was very sick and HIV positive. A Baylor pediatrician treated her and sought out her family in order to test her parents and siblings for HIV. Surprisingly, the other members of the family were all found to be HIV negative. After building trust with the patient and her mother, the physician found out that the little girl had been sent away from the family to work as a maid. She was living with sex workers and had no adult care or supervision. Likely, the patient contract HIV through sexual assault or by becoming a sex worker herself.
Thus the pediatrician took on the work of healing the whole family in order to ensure that the treatment she gave her patient would actually work. This involved planning, with the patient’s mother, a financially feasible way to bring the patient back home. Once the child was back at home, she then taught the parents how to care for their daughter, and encouraged the mother to consider family planning so as to not conceive more children they would have to send away to work. The most recent mission was to instill in this family the value of sending the patient to school.
While this story had a very sad beginning, and admittedly has the possibility of a tragic ending, the entire family has become healthier in this process Moreover, the 14 year old girl I saw, months after her initial diagnosis, had a high CD4 count, a bright smile, and a chance to start school in the upcoming year. Without the pediatrician treating the family holistically, none of this would have been possible.
Sunday, June 20, 2010
Impressions Part 1: Challenges
The past week has been a busy and eventful one, which has kept me from posting because there is so much to tell! As part of the Entrepreneurial Public Service (EPS) fellowship I receive a prompt each month to address in my blog. The June prompt offers a great opportunity to catch up on what I’ve been doing and my impressions of things here in Lilongwe. The prompt asks about challenges and surprises.To prevent burnout (yours and mine) I am going to write this first post about challenges, but stick around because a second post addressing surprises is forthcoming, and promises to be less depressing.
This post also marks the end of my two-week introduction to Pediatric HIV Care. As Dr. McCollum, the PI for my project has been in the States for the last two weeks he arranged for me to shadow clinicians in all of the different areas that kids with HIV receive care in Lilongwe: at the Baylor pediatric HIV Clinic, on the pediatric wards at KCH, in the outpatient clinic at KCH, and at area health centers. This has been a great way to see how the whole system works here. So, without further adieu my impressions of the challenges I have faced during these two weeks:
The two primary challenges that I have faced in these first two weeks have been communication and dealing with such a sick population and such limited resource settings. Communication is perhaps the most obvious challenge to my work here. Prior to arriving in Malawi I was under the impression that a large portion of the population speaks English, and that it is the language of commerce and government. This was a misconception. The primary language of all Malawians I work with is Chichewa, and many of the official interactions take place in Chichewa. So, from the outset I felt that I was on the outside, struggling to learn a language that has few cognates to English and sounds vastly foreign to my ear trained to converse in English and Spanish. Though I have mastered a few key phrases (see below entry on muli bwanji, also sanza= vomit, very important in pediatrics) my experience trying to interact in Chichewa has left me feeling like I suffer from both Broca’s and Wernicke’s aphasia (aka I hear and respond in utter nonsense). Thus, when seeing patients I require a translator, which in this setting is a nurse or clinical officer who is perfectly capable of seeing patients on their own. This limits my utility greatly.
Yet, I am not the only one challenged by language in Malawi. One of the interesting things about Malawian healthcare is their system of medical records. While an individual clinic or hospital may have their own system of stored records, each patient has a “Health Passport” in which each visit, including the chief complaint, physical exam, plan and any prescriptions are recorded (see http://giveaday.ca/blog/wp-content/uploads/2009/11/Malawi-3-174.jpg for example). Interestingly, these passports are kept completely in English. Much of the healthcare in Malawi, and especially in Lilongwe, is delivered by foreign doctors. Furthermore, all Malawians learn English in secondary school. Therefore, all Malawian medical professionals, and presumably all foreign doctors, can understand the notes in the passbook (that is, baring unintelligible handwriting, which abounds). Yet the average Malawian does not attend secondary school and therefore, doesn’t understand the information contained in their own medical record.
Medical records are certainly a hot topic in the U.S. right now, and I think the potential pros and cons of the Malawian system are worth consideration. How do you balance the need for efficiency and clarity in medical record keeping to facilitate good patient care, with simplicity to empower the patient to understand the decisions being made about their health? This seems like a particularly relevant conflict when the record isn’t being kept in the clinic or hospital, but is in the patient’s possession. This tension also brings to mind the question of the potential benefits and drawbacks of having the patient in control of their medical record. While I think an educated and empowered patient is ideal, is it beneficial for patients to know every detail of their diagnosis and plan?
On a more practical level, what do you do if a patient loses or alters their medical record? This is certainly a challenge here, as I have dealt with patients who have lost their passports, who have had animals eat part of the pages, who have spilled on them, or who have forgotten to bring them while traveling and ended up sick or injured. Thus I have found one of the greatest benefits to working in a foreign medical system is that it allows me to live the alternatives to the U.S. system which we collectively as a nation are trying to change for the better.
The other outstanding challenge that I have faced in the past two weeks is exposure to unremitting and irremediable misery. It is hard to articulate the horror of some of what I have seen, heard, smelled and felt in the past two weeks. This is a burden I have chosen to take on, so I won’t share too much but witnessing death and desolation in children is something that has become a daily occurrence for me, and which is the primary challenge to my work here. It is a constant challenge to strike a balance between grieving the lost child while maintaining composure to care for the child in the next bed who could still survive, and somehow holding onto a thread of my own mental well being. The frustration of treating hundreds of sick kids without accurate diagnostic tests, proper medications, or reliable electricity, in a hospital that is understaffed, poorly lit, filthy and teeming with children and their guardians (caregivers, usually a parent, who fill the role of nurses by administering medicines, giving food and baths and alerting doctors of changes in status) is almost paralyzing.
I don’t fully understand how I manage to go to work each day, hopeful to learn, and yet afraid of what I will witness. I do know that for now, I am meeting this challenge. I am still able to feel for the children and their parents, take joy in the kids that live to fight another day and still come home to sleep well at night. However with each day the latter becomes more and more difficult, as visions of what I have seen haunt me.
Throughout all of this I work side-by-side with physicians, nurses and clinical officers who have dedicated their lives to working in this setting. I am humbled by their resilience, especially those Malawian nurses, clinical officers, community health workers and HIV counselors whose own children suffer from many of the same maladies as those they treat. It amazes me the compassion that many are able to show on a daily basis despite the constant stimulus of misery. I have only been here two weeks and already feel great emotional wear and tear; I cannot imagine the impact of working in this setting day in and day out.
Yet I have also seen apathy and hardness in some of the nurses and clinical officers. To me this is a totally human reaction to such a situation, and so I try to also show compassion for these clinicians. It can be infuriating, however, when the Emergency Room in the outpatient clinic is packed full of beds, the physician is running around treating all 8 kids in the room and the nurses are sitting, feet up, shoes off, chatting in Chichewa, apparently oblivious to the chaos around them.
I oscillate between feeling determined, useless, depressed, critical, and hopeful each day. I am thankful for the time that I have off to re-group and decompress with the wonderful colleagues I have here at the guesthouse, and am grateful that I too have lived to fight another day; because, as you will see in my next post, each day is stock full of surprises…
This post also marks the end of my two-week introduction to Pediatric HIV Care. As Dr. McCollum, the PI for my project has been in the States for the last two weeks he arranged for me to shadow clinicians in all of the different areas that kids with HIV receive care in Lilongwe: at the Baylor pediatric HIV Clinic, on the pediatric wards at KCH, in the outpatient clinic at KCH, and at area health centers. This has been a great way to see how the whole system works here. So, without further adieu my impressions of the challenges I have faced during these two weeks:
The two primary challenges that I have faced in these first two weeks have been communication and dealing with such a sick population and such limited resource settings. Communication is perhaps the most obvious challenge to my work here. Prior to arriving in Malawi I was under the impression that a large portion of the population speaks English, and that it is the language of commerce and government. This was a misconception. The primary language of all Malawians I work with is Chichewa, and many of the official interactions take place in Chichewa. So, from the outset I felt that I was on the outside, struggling to learn a language that has few cognates to English and sounds vastly foreign to my ear trained to converse in English and Spanish. Though I have mastered a few key phrases (see below entry on muli bwanji, also sanza= vomit, very important in pediatrics) my experience trying to interact in Chichewa has left me feeling like I suffer from both Broca’s and Wernicke’s aphasia (aka I hear and respond in utter nonsense). Thus, when seeing patients I require a translator, which in this setting is a nurse or clinical officer who is perfectly capable of seeing patients on their own. This limits my utility greatly.
Yet, I am not the only one challenged by language in Malawi. One of the interesting things about Malawian healthcare is their system of medical records. While an individual clinic or hospital may have their own system of stored records, each patient has a “Health Passport” in which each visit, including the chief complaint, physical exam, plan and any prescriptions are recorded (see http://giveaday.ca/blog/wp-content/uploads/2009/11/Malawi-3-174.jpg for example). Interestingly, these passports are kept completely in English. Much of the healthcare in Malawi, and especially in Lilongwe, is delivered by foreign doctors. Furthermore, all Malawians learn English in secondary school. Therefore, all Malawian medical professionals, and presumably all foreign doctors, can understand the notes in the passbook (that is, baring unintelligible handwriting, which abounds). Yet the average Malawian does not attend secondary school and therefore, doesn’t understand the information contained in their own medical record.
Medical records are certainly a hot topic in the U.S. right now, and I think the potential pros and cons of the Malawian system are worth consideration. How do you balance the need for efficiency and clarity in medical record keeping to facilitate good patient care, with simplicity to empower the patient to understand the decisions being made about their health? This seems like a particularly relevant conflict when the record isn’t being kept in the clinic or hospital, but is in the patient’s possession. This tension also brings to mind the question of the potential benefits and drawbacks of having the patient in control of their medical record. While I think an educated and empowered patient is ideal, is it beneficial for patients to know every detail of their diagnosis and plan?
On a more practical level, what do you do if a patient loses or alters their medical record? This is certainly a challenge here, as I have dealt with patients who have lost their passports, who have had animals eat part of the pages, who have spilled on them, or who have forgotten to bring them while traveling and ended up sick or injured. Thus I have found one of the greatest benefits to working in a foreign medical system is that it allows me to live the alternatives to the U.S. system which we collectively as a nation are trying to change for the better.
The other outstanding challenge that I have faced in the past two weeks is exposure to unremitting and irremediable misery. It is hard to articulate the horror of some of what I have seen, heard, smelled and felt in the past two weeks. This is a burden I have chosen to take on, so I won’t share too much but witnessing death and desolation in children is something that has become a daily occurrence for me, and which is the primary challenge to my work here. It is a constant challenge to strike a balance between grieving the lost child while maintaining composure to care for the child in the next bed who could still survive, and somehow holding onto a thread of my own mental well being. The frustration of treating hundreds of sick kids without accurate diagnostic tests, proper medications, or reliable electricity, in a hospital that is understaffed, poorly lit, filthy and teeming with children and their guardians (caregivers, usually a parent, who fill the role of nurses by administering medicines, giving food and baths and alerting doctors of changes in status) is almost paralyzing.
I don’t fully understand how I manage to go to work each day, hopeful to learn, and yet afraid of what I will witness. I do know that for now, I am meeting this challenge. I am still able to feel for the children and their parents, take joy in the kids that live to fight another day and still come home to sleep well at night. However with each day the latter becomes more and more difficult, as visions of what I have seen haunt me.
Throughout all of this I work side-by-side with physicians, nurses and clinical officers who have dedicated their lives to working in this setting. I am humbled by their resilience, especially those Malawian nurses, clinical officers, community health workers and HIV counselors whose own children suffer from many of the same maladies as those they treat. It amazes me the compassion that many are able to show on a daily basis despite the constant stimulus of misery. I have only been here two weeks and already feel great emotional wear and tear; I cannot imagine the impact of working in this setting day in and day out.
Yet I have also seen apathy and hardness in some of the nurses and clinical officers. To me this is a totally human reaction to such a situation, and so I try to also show compassion for these clinicians. It can be infuriating, however, when the Emergency Room in the outpatient clinic is packed full of beds, the physician is running around treating all 8 kids in the room and the nurses are sitting, feet up, shoes off, chatting in Chichewa, apparently oblivious to the chaos around them.
I oscillate between feeling determined, useless, depressed, critical, and hopeful each day. I am thankful for the time that I have off to re-group and decompress with the wonderful colleagues I have here at the guesthouse, and am grateful that I too have lived to fight another day; because, as you will see in my next post, each day is stock full of surprises…
Saturday, June 5, 2010
24 Hours in Lilongwe
Well, I have arrived! After an uneventful but l-o-n-g series of plane rides we got to Lilongwe around 1 pm Malawi time (6 hours ahead of EST) yesterday. Friday was a busy day! Upon our arrival, Mariah, Timica (the two other UNC med students) and I came to the UNC guesthouse. The guesthouse is where visiting UNC researchers, physicians and students stay. I’ve never stayed in such modern facilities in the ‘developing world’ and I find myself feeling both pleased and awkward/guilty. Much of the culture shock that I have experienced on previous trips abroad has been due to adjusting to cold showers, toilets that don’t flush and co-inhabiting rodents. Here at the guesthouse there is wi-fi, cable and plenty of hot water to go around. I think all of these amenities will help make the transition easier, and will enable me to be more productive on the actual work. It does, however, make me feel uncomfortable to be living such an American lifestyle when Malawi, as a country, is so poor. Knowing all of the good work the UNC Project does helps assuage some of these feelings, but they persist none the less. I’m sure this is just a drop in the bucket in terms of the moral and ethical quandaries that this trip will bring up so I will leave that for now to report on the rest of the day.
One great thing about the UNC guesthouse is that it practically shares a campus with Kamuzu Central Hospital (KCH) and the Baylor Lighthouse facility (for pediatric HIV/AIDS treatment) so after dropping our bags we walked over to KCH to meet our future colleagues and supervisors. During my meeting, I found out that my two supervisors (one from UNC, one from Baylor) will both be gone for the first few weeks of my stay. Thankfully, they have worked out a schedule for me to do rotations on the pediatric wards of KCH, Lighthouse and some outpatient clinics so that by the time my research work begins I will have a good idea of what goes on in all of the facilities where we will be working.
In speaking with other people working at KCH, I heard of the familiar ups and downs of research in the ‘developing world.’ A common frustration was difficulty getting IRB approval on the Malawian side (as I understand it, all projects must be approved by the researcher’s home institution and by a Malawian IRB). I also heard of problems I became familiar with while working in Nicaragua: scheduling meetings that no one attends, problems with staff and patient participation etc. My research in Nicaragua taught me that, as much as possible, the most productive way to deal with these issues is not fight them but try to work with them (eg. incentivize attendance and participation) or when all else fails, just go with the flow. While it may not be official data collection, you can often learn as much from talking to the people around you as you can in administering a survey. Hopefully once I get actual assignments and deadlines I can keep this laid-back attitude.
After our meetings at KCH, Mariah and I went for a short jog to work out some of the kinks we acquired on the plane. The weather here is perfect for outdoor exercise, mid 70s in the day and mid 40s at night. When we started our run we heard the call to prayer from a mosque in Old Town, Lilongwe; Malawi has a significant Muslim population. It’s the first time I’ve ever lived somewhere with this custom, and I find hearing the call five times a day quite beautiful.
Last night we had Indian food for dinner; there is also a sizable Indian population in Malawi (keep your eyes out for an upcoming “About Malawi” page that will have more exhaustive information on the people and culture of Malawi.) Then we headed off to a farewell party for one of the Infectious Disease Fellows who has been working here for the past two years.
This was my first introduction to the large and active ex-pat community in Malawi. This is a phenomenon that I haven’t encountered before with such force. Like living in the guesthouse, there are certain benefits to having a social circle of people who enjoy activities such as running, yoga, and cooking Westernized dinners, that Malawians may be more hesitant to engage in. It is also nice to know there are people who approach this experience with similar perspectives. However, it seems counterintuitive for me to travel all the way to Malawi and work on a project that directly relates to the behavioral habits and well-being of Malawian people only to then spend my time hanging out exclusively with Europeans, Americans and Aussies. For me, it brings up many questions of socioeconomics and race that are difficult to enumerate and even more difficult to resolve. For fear of this becoming a never-ending post I won’t elaborate on those now, but expect to dedicate at least full posts to some of these issues down the road.
Post-party I slept for 12.5 hours and awoke feeling refreshed and ready to take on my first full day in Malawi. One of my major goals for my first two weeks here is getting the traditional Malawian greeting down. While many people here speak English, Chichewa is the native language. In Chichewa you never just say “hi” the exchange (in Chichewa) is as follows:
Muli bwanji? How are you?
Ndili bwino, kaya inu? I am fine. How are you?
Ndlili bwino, zicomo. I am fine thanks.
Zikomo kwamberia. Thank you very much.
There are different variations on this depending on time of day, and infinite ways you can alter it depending on the person you are addressing. For now, I’m just trying to learn the most generic version. So far I can get the first line out if I am the one initiating the conversation. If I don’t initiate, I get completely thrown off and reply in some incomprehensible mumble-jumble. This is why I am also focusing on ‘zikomo’ which means thank you and ‘pepani’ which means sorry/excuse me. I find these phrases are almost always considered polite.
I have also found that running is an excellent time to practice. I call out “Muli bwanjni” as I pass and by the time that it is my turn to respond I am long gone. On second thought, this may not be the best practice but it boosts my morale as I run along calling out a greeting in Chichewa and then motivates me to run quickly before the ‘conversation’ comes to the part where I should respond “ndili bwino, zikomo” -which I find very difficult to pronounce.
After an afternoon of shopping for vegetables and chitengas (spelling approximated), the traditional fabrics Malawian women use as wraps and to carry their babies, I’m back at the guesthouse trying to learn Chichewa and rest up for another full day. So for now I’ll say tsalani bwino! (Stay well)
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