On Wednesday we took a road trip!

What made this road trip so newsworthy, you ask?

Well, for starters, it was a work-related road trip.

Curious yet?

What if I told you that this road trip changed the way we look at Morphine Tracker?

Okay, maybe I lost you on that last one.

 

Fine, I’ll tell you already!

So this past week we went to NdiMoyo Palliative Care Clinic in Salima. It’s one of the first places in Malawi to focus entirely on pain management in terminal patients.

The story of how this came to be is pretty involved, but I’ll try to stick to highlights. NdiMoyo has a previous relationship with Rice BTB interns; people came 3 years ago to share the Data Pall Electronic Medical Records System with the clinic. Last year, Morphine Tracker made a similar debut. Unfortunately, we weren’t aware of this connection until last week, when one of the St. Gabe’s clinicians, Suave, mentioned NdiMoyo. With a seed of curiosity but fairly low hopes, we shot off an email to the address on the clinic website.

 

In only a few hours, we had gotten a response (remarkable by American standards, not to mention Malawian timing!). Over the next few days, we got pulled into an in-depth email thread that taught us more and more about NdiMoyo. We met Lucy, the Malawian lady who has given her life to promoting the fledgling practice of palliative care in her country. Then we talked with Tony, Lucy’s husband and a whirlwind of force for the planning and promotion of the clinic. Finally, we talked with Linly, the clinic manager, about many of the details of our project.

 

We were simply blown away by NdiMoyo’s responses. Turns out, they have been using BOTH Data Pall and Morphine Tracker! Although they faced similar challenges to St. Gabe’s with staff leaving before other people could be trained, Linly took it upon herself to learn the program. They were super excited to get our updates and training resources. It seemed like before we could blink, we had been invited to visit the clinic and train more of the staff!

 

So less than a week later, we found ourselves on the road to Salima. It was a wild ride (not literally- the driver was quite safe). Over the course of about 10 hours, we got a crash course in goings on at NdiMoyo, a face-to-face meeting with all the incredible people we’ve been corresponding with, and a chance to train two more nurses in Data Pall and Morphine Tracker. It was especially motivating that we left with a veritable laundry list of changes to make to Data Pall and Morphine Tracker. One of the key takeaways from our visit is that NdiMoyo and St. Gabriel’s have very different needs with respect to record keeping. Although they both are doing an incredible job of promoting pain-free dignity for individuals facing chronic illness, they’re doing it in some drastically different ways. All of these differences mean that the two organizations are in a position to have separate needs and goals, especially in terms of record keeping.

Here are a few of the key differences that I took in at NdiMoyo:

 

Patient diagnoses: Tony told us that close to 90% of patients at NdiMoyo are being treated for some form of cancer. Although the most typical is Karposi’s sarcoma (1), cervical cancer comprises a large percentage among women, with esophageal cancer not far behind. As a result, many patients at NdiMoyo are in advanced stages of illness. They will likely die within a relatively short time of beginning the palliative care program. St. Gabe’s sees a lot of cancer patients, true, but also commonly treat heart failure, stokes, and sickle cell anemia. These tend to be conditions that are treated for the long haul; although the conditions may be largely untreatable, patient’s pain and limitations may be controlled with medications like morphine and treatments like physiotherapy.

 

Patient volume: NdiMoyo’s clinic volume has stabilized around 300 patients per year. While I don’t have exact numbers for St. Gabe’s palliative care, the inpatient ward typically holds between 2 and 8 patients in a day. The outpatient clinics, where patients typically go once a month to receive medications and check in with Alex, can see 35-80 patients in a day. Two clinics a week would mean between 320 and 400 patients in a month. Add maybe 30 inpatient treatments and another 50 home based care visits (I’m completely guessing on these numbers), and we’re seeing probably upwards of 450 or 500 unique patients in a year. What I think the difference in caseload primarily contributes to are different needs in terms of record keeping. Because NdiMoyo is a smaller clinic that is exclusively focused on palliative care, comprehensive patient record keeping can prove tremendously important for training staff to meet specific needs and reporting to donors. For organizations like NdiMoyo that may have more of the luxury of time, systems like BTB’s Electronic Medical Records System (EMRS) Data Pall can be an incredible tool. For places like St. Gabe’s, where the sheer patient volume makes it difficult to keep detailed records, systems like Morphine Tracker are down and dirty ways to keep track of what’s most important: the pain management drugs available to the patients who need them most.

 

Use of herbal medications: Lucy’s pride and joy is her garden. Beautiful, sprawling across most of the clinic grounds, most every plant also has medicinal functions. Clinic staff will prescribe these medicines in combination with pharmaceuticals in order to increase benefits to the patient. Different plants can soothe the stomach, act as a salve for skin rashes, and even contained some active ingredients for antimalarials and chemotherapy drugs! Probably my favorite is the popo tree (papaya)- it seemed like everything could be used, from the seeds relieve constipation to the skin of the fruit, which can be used to clean debris from an infected wound. And of course, the fruit provides essential vitamins and minerals!

According to Lucy and Linly, patients are usually very accepting of these treatments, eager to use things that they know as a part of a more traditional form of healing.

 

Inward vs. outward focus: St. Gabe’s has a HUGE catchment area, with patients coming from as far as past Lilongwe and across the borders into Zambia and Mozambique. Ndi Moyo, on the other hand, just serves the district of Salima. There’s a reason for this difference, and it largely comes down to the goals of the organization. St. Gabriel’s understands that there is currently a HUGE gap in palliative care provision throughout Sub-Saharan Africa. As such, they’re using the hospital’s resources to allow as many people as possible to face chronic illnesses with dignity. NdiMoyo’s focus for the future is largely on being a role model for aspiring palliative care providers; they specifically have chosen to not expand in favor of instead forming mentorships with hospitals and clinics in other districts. NdiMoyo’s founders, Lucy and Tony, speak of holding brief clinical trainings to allow practitioners from all over the region to get hands-on experience with palliative care. While this scale-up process is still in the early stages, I admire NdiMoyo’s ability to acknowledge the limitations of their clinic.

 

Methods for provision of services: St. Gabriel’s takes care of their patients in three main ways: through inpatient services in the FCCU, through biweekly outpatient clinics, and during home based care appointments with staff and community volunteers. NdiMoyo philosophy doesn’t focus on inpatient services; they believe in seeing patients wherever allows them to live the happiest and most comfortable life. This usually means at the clinic, at outreach clinics, and in the patients’ homes, but it can often expand to include Salima District Hospital or even the side of a road! Both of these systems have merits: some people are sick enough to require the reound-the-clock care of inpatient treatment, while others appreciate the flexibility of mobile visits. The way I see it, they’re two sides of the same coin, trying to provide palliative care with quality and compassion to their patients.

 

I think that perhaps the most telling thing about our trip to NdiMoyo is NdiMoyo means something along the lines of “the place giving life” in Chichewa. From what I’ve seen, that’s an accurate representation of their service. They take people who have lost hope in the face of devastating diagnoses and give them an opportunity to truly live in their last days. NdiMoyo is providing people with a chance to live a fulfilling life- to feel supported, to live pain-free, and to be at peace. I’m very optimistic about the role that Rice BTB software can play in encouraging this goal, and I hope that we have the opportunity to build further on our relationship with NdiMoyo in the coming months and years!

 

(1) A cancer that often arises as a result of being immunocomprimised, as is characteristic of HIV+ patients.