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 HIV counselors. Show all posts
Showing posts with label HIV counselors. Show all posts
Sunday, August 22, 2010
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…
Tuesday, June 8, 2010
Familiar Job, Novel Setting
Going into today I felt simultaneously that I had a fair amount of experience to bank on, and that I was totally unprepared for spending a day with HIV counselors who would test and counsel mothers and their young children. As a SHAC HIV counselor I have never tested or counseled children or their parents, and I have been lucky enough to have never had a positive. Going into today I knew the former was a definite and suspected the latter would occur before the day was out.
I started my day in the inpatient wards. The team of counselors, Gift, Effie, Lonely, and Gertrude who I worked with (more explanation of Malawian names later) are charged with testing pediatric inpatients who are referred by clinicians, whose mother’s have been identified as HIV+ at intake, or who meet certain clinical criteria. Before the day started Gift introduced me to the other counselors and then helped me practice some of my Chichewa. I learned (and then promptly forgot) how to say “I am going home.” I’m not sure what it means that this was the phrase I was taught at the beginning of the day, but things preceded better than they might have given that start.
In testing children for HIV there are several unique considerations: the first is determining the mother’s HIV status. Of the fifteen (or so) women who we counseled this morning, about three were known to be HIV positive. For these mothers there is a risk (I believe around 10-15%) that they transmitted the virus to their child during delivery, and a continued risk of transmitting the virus through breastfeeding. Interestingly, while there is an increased risk of transmitting HIV during breastfeeding, even over delivery itself, breastfeeding is still recommended for the first year of life.
The reason for this recommendation is that malnutrition in the first six months is a much greater threat to children than HIV transmitted from mother to child, especially if the mother is on antiretroviral therapy. Previous guidelines said to wean children from breast feeding at six months, yet it was found that children weaned at this interval had a high death rate due to malnutrition, and yet still had a high risk of mother-to-child transmission (MTCT) because the solid foods were causing micro tears in the infant’s stomach that, when breast milk was given, allowed the virus to enter their circulation. The recommendation has thus been amended to delay weaning to one year which has been shown to reduce risk of both malnourishment and MTCT. This example is illustrative of the complexities of practicing medicine in such a limited-resource setting. The best intentions can be completely confounded by the overwhelming disease burden of the population.
In addition to learning the ins and out of pediatric testing and counseling, it was interesting to see some of the organizational differences between SHAC HIV testing and testing at KCH. KCH employs a group pre-test counseling session with individual post-test counseling sessions. This allows counselors to test a higher volume of patients, and may have the added benefit of normalizing testing without revealing too much personal information, though as other counselors, hospital personnel and other patients often barged in on pre- and post-test counseling confidentiality was certain lacking in both the inpatient and outpatient wards.
I asked one of the counselors whether people had upset reactions to positive test. She told me no, people just accept it. When I’m counseling a patient in Durham who tells me about high risk behaviors, and I being to suspect they are infected I feel a panic start to rise. Of course, it is my job as a counselor to push the panic down and help the patient deal with the test results. Yet, I found that when HIV+ mothers came in with their newly delivered infants that panic didn’t rise. It was as if I too had somehow come to just accept it. I’m not sure what this means. We didn’t deliver a single positive result today; I suspect doing so would have provoked a much more emotional response on my behalf. But I am still left wondering what it means about me that I didn’t have ‘the panic.’ Am I becoming hardened? Or did I simply adapt?
I started my day in the inpatient wards. The team of counselors, Gift, Effie, Lonely, and Gertrude who I worked with (more explanation of Malawian names later) are charged with testing pediatric inpatients who are referred by clinicians, whose mother’s have been identified as HIV+ at intake, or who meet certain clinical criteria. Before the day started Gift introduced me to the other counselors and then helped me practice some of my Chichewa. I learned (and then promptly forgot) how to say “I am going home.” I’m not sure what it means that this was the phrase I was taught at the beginning of the day, but things preceded better than they might have given that start.
In testing children for HIV there are several unique considerations: the first is determining the mother’s HIV status. Of the fifteen (or so) women who we counseled this morning, about three were known to be HIV positive. For these mothers there is a risk (I believe around 10-15%) that they transmitted the virus to their child during delivery, and a continued risk of transmitting the virus through breastfeeding. Interestingly, while there is an increased risk of transmitting HIV during breastfeeding, even over delivery itself, breastfeeding is still recommended for the first year of life.
The reason for this recommendation is that malnutrition in the first six months is a much greater threat to children than HIV transmitted from mother to child, especially if the mother is on antiretroviral therapy. Previous guidelines said to wean children from breast feeding at six months, yet it was found that children weaned at this interval had a high death rate due to malnutrition, and yet still had a high risk of mother-to-child transmission (MTCT) because the solid foods were causing micro tears in the infant’s stomach that, when breast milk was given, allowed the virus to enter their circulation. The recommendation has thus been amended to delay weaning to one year which has been shown to reduce risk of both malnourishment and MTCT. This example is illustrative of the complexities of practicing medicine in such a limited-resource setting. The best intentions can be completely confounded by the overwhelming disease burden of the population.
In addition to learning the ins and out of pediatric testing and counseling, it was interesting to see some of the organizational differences between SHAC HIV testing and testing at KCH. KCH employs a group pre-test counseling session with individual post-test counseling sessions. This allows counselors to test a higher volume of patients, and may have the added benefit of normalizing testing without revealing too much personal information, though as other counselors, hospital personnel and other patients often barged in on pre- and post-test counseling confidentiality was certain lacking in both the inpatient and outpatient wards.
I asked one of the counselors whether people had upset reactions to positive test. She told me no, people just accept it. When I’m counseling a patient in Durham who tells me about high risk behaviors, and I being to suspect they are infected I feel a panic start to rise. Of course, it is my job as a counselor to push the panic down and help the patient deal with the test results. Yet, I found that when HIV+ mothers came in with their newly delivered infants that panic didn’t rise. It was as if I too had somehow come to just accept it. I’m not sure what this means. We didn’t deliver a single positive result today; I suspect doing so would have provoked a much more emotional response on my behalf. But I am still left wondering what it means about me that I didn’t have ‘the panic.’ Am I becoming hardened? Or did I simply adapt?
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