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.
Showing posts with label KCH. Show all posts
Showing posts with label KCH. Show all posts
Sunday, July 11, 2010
Thursday, July 8, 2010
Promises Fulfilled
It’s amazing how time flies! I realized this morning how long it has been since I last posted and thought it was high time I put some new material up. One of the reasons I haven’t updated recently is that we are now working on study set up which means that I am spending much more time in an office assembling databases and data collection and much less time in the hospital/clinic. I don’t think my insights on Microsoft Excel and Access are really blog material, so I’ll spare you.
Now that I finally have access to reasonably speedy internet I thought I would take the opportunity to post some pictures, something I’ve been trying to do for weeks, but have been thwarted by poor connectivity.
I don’t have many pictures of people, because I think there are many ethical grey zones surrounding photographing individuals over whom one has power. As an American medical student I am already granted so much access to the people of Malawi, and especially to the patients at KCH, that for the most part I am not comfortable photographing the residents/patients I interact with.
I hope you will enjoy these landscape pictures and pictures of other UNC Project folks.
First, a view from Ntchisi Forest:
The girls from the guesthouse took a day trip to Ntchisi one Sunday in June. There were gorgeous views from the top (as you can see) and we all had a great time!
Speaking of the guesthouse, here is our happy home:
Now for a cultural lesson....While driving down the highway in Malawi one will often see men in costume running down the road, often with large knives. These men are Gule, members of a secrete society who get together, dress up in costume and masks, smoke marijuana, drinking homemade alcohol and then go from town to town performing dances. They are often hired to dance at weddings and funerals. If you see a Gule running down the road you can pull over and give him several hundred kwacha to dance and let you take pictures. When Mariah, Timica, Rob, Rita and I went to Salima this is precisely what we did. Below, a Gule:
Speaking of Malawian culture, grocery shopping here is a complicated process involving one or two grocery stores, and a trip to the market where we get all of our produce. The Farmer's Market is one of my favorite summer activities, so it's nice to be able to recreate that here.
The Lake is a very important part of the Malawian national consciousness. Since arriving I have been asked repeatedly if I have been to the lake, and if I have eaten Chambo from the lake. I have done both, and enjoyed both greatly. More than being a great place to swim and fish, Lake Malawi is the only place in the world where Cichlids can be found. These small flourescent fish are very popular for fish tanks in the States.
In one of my first posts I wrote about chitenjes; the colorful cloth that Malawian women use as wraps for themselves and to createe slings in which to carry their babies. The marke in Lilongwe has a huge selection of chitenjes, here is a small sampling:
So, as you can see Malawi is full of many many beautiful things. I hope to get back to posting more regularly and with more pictures (even some with people!) but for now I must say tewanana (see you later!)
Now that I finally have access to reasonably speedy internet I thought I would take the opportunity to post some pictures, something I’ve been trying to do for weeks, but have been thwarted by poor connectivity.
I don’t have many pictures of people, because I think there are many ethical grey zones surrounding photographing individuals over whom one has power. As an American medical student I am already granted so much access to the people of Malawi, and especially to the patients at KCH, that for the most part I am not comfortable photographing the residents/patients I interact with.
I hope you will enjoy these landscape pictures and pictures of other UNC Project folks.
First, a view from Ntchisi Forest:
The girls from the guesthouse took a day trip to Ntchisi one Sunday in June. There were gorgeous views from the top (as you can see) and we all had a great time!Speaking of the guesthouse, here is our happy home:
Now for a cultural lesson....While driving down the highway in Malawi one will often see men in costume running down the road, often with large knives. These men are Gule, members of a secrete society who get together, dress up in costume and masks, smoke marijuana, drinking homemade alcohol and then go from town to town performing dances. They are often hired to dance at weddings and funerals. If you see a Gule running down the road you can pull over and give him several hundred kwacha to dance and let you take pictures. When Mariah, Timica, Rob, Rita and I went to Salima this is precisely what we did. Below, a Gule:
Speaking of Malawian culture, grocery shopping here is a complicated process involving one or two grocery stores, and a trip to the market where we get all of our produce. The Farmer's Market is one of my favorite summer activities, so it's nice to be able to recreate that here.
The Lake is a very important part of the Malawian national consciousness. Since arriving I have been asked repeatedly if I have been to the lake, and if I have eaten Chambo from the lake. I have done both, and enjoyed both greatly. More than being a great place to swim and fish, Lake Malawi is the only place in the world where Cichlids can be found. These small flourescent fish are very popular for fish tanks in the States.
In one of my first posts I wrote about chitenjes; the colorful cloth that Malawian women use as wraps for themselves and to createe slings in which to carry their babies. The marke in Lilongwe has a huge selection of chitenjes, here is a small sampling:
So, as you can see Malawi is full of many many beautiful things. I hope to get back to posting more regularly and with more pictures (even some with people!) but for now I must say tewanana (see you later!)
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…
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?
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)
Subscribe to:
Posts (Atom)