Stanford University
Center for Innovation in
Global Health  

Disclosure

There is a lot of controversy about what and when to tell children living with HIV about their diagnosis. The South African national guidelines recommend disclosure of HIV status to children at between 8-12 years of age. It is meant to be a gradual process in which children are told as much as is developmentally appropriate - as they get older more and more information is revealed. Since some of them have been taking antiretrovirals (ARVs) since they were infants, the disclosure process could occur over years and ideally as a provider builds a relationship with the patient and the family.

The conflict and controversy arises because many families don't think their children can handle the information and they don't want to upset them because they've already been through so much. Many of them have lost their parents to HIV.

I wonder how much the children have figured out on their own. They come to an HIV clinic monthly, they take daily medications, and they are often malnourished and plagued by rashes and infections, even with ARVs. The dogma within the pediatric establishment in the US is that children are quite intuitive and are often able to deduce what's going on. We often tell families that without information, children sometimes assume the worst and when they ultimately do find out what's going on, they become resentful, angry, and rebellious.

I first became aware of the controversy when a 11 year old boy came in and his sister was complaining that he was refusing to take his medications. As I began to explore the complaint, it became apparent that the patient wasn't aware of his HIV status. You can imagine it's a delicate situation, as the patient and caregiver are both in the room and are being interviewed via a Zulu nurse working as interpreter. It was readily apprent she was very uncomfotable with discussing disclosure in front of the patient. After sending the patient out to the waiting room, I encouraged her to be honest with him. We talked about why she was scared to tell him, what the benefits might be and what would be the ideal way to tell him. She said she would discuss it with their granny and we could revisit the question at her next visit. Prior to this encounter, I hadn't included disclosure in my standard line of questioning during a visit, but as is often the case, when you start asking, you get answers.

As a result I have helped deliver an HIV diagnosis to several children over the course of my time here at Church of Scotland Hospital. Most have taken it stoicly, a few has said that they don't want to know the name of their illness. I've found that the older the child is, the harder it is to tell them. One 14 year old girl accompanied by her aunt had no knowledge of her diagnosis. I did my best to be brief and straightforward, but with an interpreter I don't know what was actually said or how it was said. When I told her she had HIV, she burst into tears and wept quietly. Seated across a large wooden desk from her, I felt ill-prepared with no tissues within reach, I wasn't sure what the culturally appropriate gestures of comfort and concern would be.

The hardest part is that disclosure should be a longitudinal process where the child (and family) can return with questions. I don't get to see them for follow up and ensure they continue to receive support and guidance throughout illness. ARV clinic is all about depending on colleagues and I hope that in the rush to dispense ARVs, these children and their education about their diagnosis doesn't get neglected.

Patan Hospital

Thanks to the generous Mary Duke Biddle Scholarship fund, I was able to spend six weeks in February and March in Patan, Nepal, working at Patan Hospital. Patan Hospital was initially started in 1951 (although not in its current location) by a Christian missionary who visited Nepal and understood the incredible need for appropriate medical service for the Nepali people. Patan Hospital has since passed through multiple different hands, but is currently being run by the Patan Academy of Health Sciences. Patan Hospital offers many different services to its patients, including 24-hour emergency care, outpatient services, inpatient services, laboratory, CT services, pharmacy, and much, much more.

During my six weeks at Patan Hospital, I spent variable amounts of time on the Pediatric Ward, in the NICU, PICU, and newborn nurseries. The Inpatient Ward has 33 pediatric beds, almost all of which are usually occupied with various different types of patients (with excess patients frequently spilling in to the already crowded hallways). Some of the patients are similar to those back in the US Ė pneumonia, bronchiolitis, gastroenteritis with dehydration, febrile seizures, and abscesses. Others are quite different from the US, including cerebral tuberculosis, brain abscesses, and enteric fever.

While the medical care is very different in the United States than in Nepal, it was a very educational experience. Very few patients in Nepal have medical insurance; therefore, they are required to pay for hospitalization (and every aspect of hospitalization) out-of-pocket. While the cost of hospitalization and other medical care needs may seem incredibly reasonable to those of us that are used to the exorbitant prices of medical care within the United States, many families in Nepal are unable to afford what we would consider ďsimpleĒ therapies or work-up modalities in the US. For example, a CT scan in Nepal costs approximately 2500 rupees (approximately $30 US), whereas it can cost upwards of $5000 in the states; however, we had a patient sitting in the hospital for over two weeks, despite the concern that an ear infection had caused a brain abscess, because his family could not afford a CT scan for further evaluation. Additionally, the family in Nepal is responsible for all care of the patient, including changing and washing the bed linens, providing food and water, and administering all medications (except IV) to the patient. The hospital is always full of family members, many of whom are cooking or washing laundry out on the balconies.

The day runs relatively similar to back at home. We have either morning report or a teaching session most mornings around 8:00am. This usually lasts a little over an hour, after which there is pre-rounding. I usually spend this time going through the patient charts to catch myself up on what happened with the patients overnight and who are the new admissions. The Pediatric Ward is divided in to two teams, with each team having half of the beds. Interns and residents pre-round on the patients, and rounds usually begin around 10:00am or so. Each patient is discussed at length, with the family actively involved in the conversation. Most families only speak Nepali, and the team often reverts to speaking Nepali, as well, so it can make rounding a bit of a guessing game, but still educational.

After rounds are over, I usually head down to OPD, the Outpatient Department. Each day is a different clinic for pediatrics, with clinics such as High Risk Infant, Nephrology, Cardiology, and Acute care. I often work with either a resident or an attending, who is able to translate with the patients and families in Nepali. The OPD is located in one large room, with many different patients being seen at different tables. Itís different than Iím used to in the US, but very efficient. Setting it up this way, the team of attendings and residents is often able to see up to ten patients at a time.

The days in the NICU, PICU, and newborn nursery run very similarly, although the patients in the NICU and PICU are, obviously, a bit more complicated. I was quite impressed by the resources that were available at the hospital in the intensive care setting, including ventilators, inotropes, and many different types of antibiotics. Additionally, almost any service is available for consultation.

My time spent at Patan Hospital was incredibly valuable, in more ways than just the medical experience. While there is a lot to gain by seeing and learning about new pathology, there is also a great deal to gain by immersing oneself in a new setting and soaking up the culture and the new experiences. It provides a wonderful opportunity for growth.

Muli Bwanji!

Finally! Iíve arrived in MalawiÖ..my third trip here in the past 3 years and I'm so grateful to be back once again! This place is magical. The people are friendly and welcoming, the surroundings are majestic, and the work so satisfying that I canít help but come back year after year. Iím at St. Gabrielís Hospital in Namitete, a small village about 60 km outside of Lilongwe, Malawiís capital city. St. Gabrielís is responsible for the medical care of approximately 250,000 people, mostly from the rural areas surrounding Namitete. There are also patients arriving from Lilongwe and other parts of Malawi, as well as from Zambia and Mozambique, seeking specialized medical care. The hospital treats approximately 12,000 inpatients, as well as more than 40,000 ambulatory patients per year. In addition to its 100 bed pediatric ward, it also includes adult, maternal, obstetric, and surgical care.

I first came here as an intern and the reality of how most medical care is delivered around the world hit me hard. The 100 bed pediatric ward typically had over 200 patients admitted at a time during the malaria seasonÖthatís two patients (and their mothers) per bed, not to mention the children and their parents camped out on the floor. Staffing in the peds ward was minimal at best. It included 2 nurses, 1-2 clinical officers, and no physicians. Thatís essentially a 1:100 nurse to patient ratio!! None of this is what shocked me the most however. Every morning, Iíd scour the line of patients to find the most ill, the children in need of expeditious medical attention. I would often stumble across children who were unconscious, seizing, and many that had already died in their motherís arms while waiting for care. To me, this was horrifying. Why werenít these children being triaged? Why are they waiting in line for 8 hours when they didnít have a single hour to spare? What could I do, if anything, about this?

I talked to the hospital director and we both agreed this was a problem but that the hospital didnít have the resources to address it on their own. I decided to take this on as my project. I found a fellow resident, Dr. Robyn Rogers, a nurse, Kathleen O'Rourke, and a project development genius, Troy Schauls to take this project on with me as their own. To make a long story short, we spent a year researching triage in the developing world, researching potential cultural barriers, raising money, and figuring out how triage could work in this specific resource poor setting. We returned to Malawi last year and implemented a culturally appropriate triage system, recruited local staff to serve on the triage committee, and essentially handed over our project to the locals, realizing that if this was going to work and have an appreciable influence on mortality, it would have to be left in the hands of the locals who could oversee its success. So after a month of hard work and many meetings and training sessions, we left Malawi hopeful that our hard work would pay off. We left optimistic, but slightly skeptical at the same time. Those of you who have been to Africa can probably appreciate where the skepticism came from. Those of you who havenítÖ..well letís just say that getting work done here can be a challenge.

We finally arrived back to Malawi a few days ago with many questions looming in our minds. Would our system still be in place? Are all our triage signs directing patient flow still up? Are all patients still receiving a red, yellow, or green card to communicate their illness status on arrival? Are the sickest kids with red cards still being cared for first?

Well, as to stop boring you as this is getting really longÖthe answer to all those questions is YES! On our arrival multiple staff members greeted us warmly and thanked us for the system that has presumably saved many lives. Our system is exactly how we left it and culturally has become a part of St. Gabrielís. This hospital is no longer first-come first-serve but one where patients wave the most ill to the front of the line, putting their neighbor's needs over their own. Sure, there are still parts of the program that need some work but overall, it has been a community effort and a beautiful example of people coming together to take care of each other. We are in the midst of collecting the mortality data over the past year so more to come on the exact impact and the next phase of the project.

Since knowing the triage piece is groomed and stable, Iíve been able to focus on life in Namitete, both inside the hospital and out. Here is a glimpse at my schedule here: I wake up at 5-6am, drink coffee, read, do some yoga, and am at AM report by 7:30. Patient care time is from 8-12, then lunch (and nap) from 12-2, then back to work till 5. After work, I usually go on a long run through small villages and lush cornfields (yes, I get made fun of by the localsÖ..alot. I also usually have an entourage of children running after me, giggling endlessly). Then itís dinner time. There are 8 of us doctors/nurses in the guest house and we take turns cooking huge, local, fresh, family style dinners nightly. I eat better here than I do at home! Then usually I read some more and am in bed by 9. Ahhh, the simple life.

Well, I have a lot to say about life inside the hospital but this is getting really long now so I will focus on that for my next entry! Hope you all are enjoying/have enjoyed/will enjoy your sites as much as I have mine!

Kaposi Sarcoma

It's really hard to give someone a new diagnosis of cancer through an interpreter. †In the past, when I have dealt this, it has been with a Spanish speaking patient, so although I am using an interpreter, I can follow the conversation and more importantly, I have a better of how the patient is feeling and responding to the news. ††

Today I had a patient in the HIV clinic who was complaining of pain with swallowing for the last week. †In fact, she hasn't really been able to eat solid food. †As I gathered more history, I learned that she was also vomiting and that it was frequently blood stained. †The story continued to unfold, bit by bit, through the nurse/Zulu interpreter and I found that she had lesions in the back of her mouth that she could see in the mirror. †When I looked myself, it confirmed my suspicion, she had Kaposi Sarcoma (KS). †

I shouldn't overstate my experience here. †I have never diagnosed KS before. †In fact the last time I saw KS was on my HIV rotation in medical school, some 3 years ago. †That said, these lesions and her complaints were like something out a textbook. †That's one of thing about external physical findings, some are non-specific and some are pathomnemonic - once you've seen them before, you'll always recognize them. †

Further confirmation came when I heard that she had a biopsy of another lesion. †It took us 2 hours to track down the pathology report, but it definitively confirmed that she had KS. †Having recently started on anti-retroviral medications (for her HIV), she is at risk for a flare of her KS due to immune reconstitution inflammatory syndrome (IRIS). †I began the task of explaining her diagnosis and preparing for the next steps in her diagnosis and treatment. †That is when I realized how hard it was to gauge her response to the diagnosis. †She took the news stoicly and her only question was when I had scheduled the appointment with the oncologist for her. †I didn't realize how dependent I usually am on linking a patients words to their body language, facial expression, and tone; since I couldn't understand when the nurse was translating which aspects of what I said, I couldn't evaluate the effect they were having on the patient. †Consenting her for endoscopy was equally challenging because I couldn't tell what she understand or even judge her educational level. †

I can only hope that she understood enough to make it to her appointments at the referral center 2-3 hours away. †

Rural district hospital with no ICU

On a Friday afternoon, we finished early in ARV clinic and so I stopped by the peds ward to check on a few of the patients I had seen the previous day - one with suspected epidermolysis bullosa and who presented with progressive weakness and difficulty walking over last 7 months, concerning for a muscular dystropy.

Upon entering the ward of 35 filled beds, I was immediately drawn to a single bedside where the other doctor and two of the nurses seemed to be occupied. Even from the other side of the room, it was apparent that child was in severe distress. His eyes were only partially opened, he was breathing rapidly and deeply, and his extremities all sat limply on the bed. The other doctor briefly filled me in on the history: this a 10 month former twin presenting with fever, vomiting, and diarrhea.

The child was found with a bicarbonate of 3, but the source of the excess acid in his system was unknown. Unfortunately, blood gases are not available at Church of Scotland Hospital (COSH). In addition, the creatinine, a measure of kidney function, was 10 times the upper limit of normal. Luckily he was still making urine. Still he was clearly in shock. We'd already given him antibiotics, presuming that the source of his distress was sepsis. My colleague was in the process of pouring intravenous fluids into him, when he had a brief tonic clonic seizure.

Our patient clearly needed a higher level of care, ideally intensive care, than we could provide. Unfortunately, the hospital we usually refer to had no beds available. I was very skeptical that without intubation this patient would survive. We could intubate him at COSH, but the nurses were not qualified to take of ICU level patient, so intubated patients had to be immediately transfered. I was at least glad to hear that we had a portable ventilator available for transport.

At this point, we called one of the most senior doctors in the hospital. He's been at COSH for 16 years, and although he's internal medicine trained, he spent 5 years running the peds ward. By the time he arrived, we were bag mask ventilating the child and had inserted an oral area, which seemed to help a lot. Still it was only a temporary solution. This experienced doctor made additional management recommendations, but essentially confirmed that if the referral hospital wouldn't accept the patient, we had no choice but to avoid intubation and do our best to manage the patient ourselves with the resources we had available.

I have only ever been at the referral hospital who is receiving patients from other transferring hospital. This was a less familar kind of frustration for me: knowing what to do, even being able to do it, but ultimately to the detriment of the patient. Finally we were able to find someone who was willing to accept the patient.

Greetings from Tugela Ferry!

Well, after a long journey I made it safely to my destination. I left from San Francisco airport on a Saturday afternoon and arrived in Tugela Ferry in KwaZulu Natal, South Africa on Tuesday afternoon.

I flew to Dubai where I had a 16 hour layover and then to Durban where I also had to spend the night in large part because the roads to Tugela Ferry are not well lit. The following day, Tokazani from Philanjalo, the NGO that hosts us, came to pick me up. The drive from Durban to Tugela Ferry was beautiful and surprisingly smooth. We stopped in Greytown to pick up groceries.

Having relatively little idea about the accomodations made grocery shopping an interesting challenge. I was full of odd questions for Tokazani: Did I need to buy bottled water or could I drink the water from the tap in Tugela Ferry? Would I have access to a fridge so I could buy perishables, or should I stick to products that could handle the 90 F heat? What produce would be available in the markets in Tugela Ferry? Which fruits and vegetables are safe to eat?

Upon our arrival in Tugela Ferry, most of my questions were answered shortly thereafter. I met Xolani who hooked me up with a cell phone and a key to my flat. He showed me to my new place, which is pretty plush. It is fully equipped with electricity which runs an air conditioner, ceiling fans, refrigerator, and microwave reliably. Likewise, there is running hot and cold water that leads to functioning toliets, sinks, shower and even a washing machine. Last, but certainly not least, in the amenities category is the wireless internet that is allowing me to write this post - it is sometimes a slow connection, but it gets the job done.

More updates to come soon...

Cure Children's Hospital of Uganda



I chose to pursue a career in medicine after conducting medical research in a small fishing village in Costa Rica while in college. After three months of clinical rotations in medical school, I felt equipped with new skills and perspectives and once again motivated to travel. After speaking to an advisor who connected me with a former Stanford medical student who had a recent great experience at the CURE Children's Neurosurgical Hospital in Mbale, Uganda, I was bound for Africa. I would be experiencing a completely different type of medicine and a continent I had never visited. I was excited, but had no idea what to expect. 


2 quick weeks later, I returned to the US proud of my contribution to patient care, appreciative of the opportunities I have been blessed with, reaffirmed in my interest in pursuing a career in the clinical neurosciences, and more motivated than ever to continue working as an advocate for underserved patients. Thank you to the Mary Duke Biddle Clinical Scholar's Program for making this experience a reality.

New Blog!


All,
This is the new Mary Duke Biddle Clinical Scholars Program Blog. This is for the use of Mary Duke Scholars.

We hope you all will find it helpful and useful.

Happy Blogging!
CIGH and Stanford Pediatrics

Stanford Medicine Resources:

Footer Links: