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…
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