We have spent the majority of the past few weeks in the Palliative Care Ward working on DataPall and the Morphine Dosing System and I am truly excited to share our progress. However, before discussing such activities, I thought I’d share some observations on palliative care.
Overview of Palliative Care
As described by the WHO (World Health Organization), palliative care emphasizes improving the quality of life of patients who are faced with life-threating illnesses through alleviation of suffering/pain as well as psychosocial and spiritual disturbances. While this serves as a broad characterization, the implementation of these goals varies significantly in Malawi versus the States.
In Malawi, the palliative care ward focuses on all patients who have incurable diseases. Most predominantly this includes HIV/AIDS and Cancer, but this also spans congestive heart failure, diabetes, hypertension, liver/kidney failure, and other non-communicable diseases. Palliative care is not only about end-of-life care, but anything that requires long-term management/symptom control. For example, most individuals live long and productive lives with anti-retroviral treatment for HIV/AIDS or insulin provision for diabetes. Often many of these diseases in the US are managed in the primary care setting and are not necessarily linked with palliative care (at least in the onset). Another important distinction is the use of palliative care in the two countries.
Using cancer as a case study is particularly informative. In Malawi, there is a double burden of disease, with still high levels of preventable/treatable infectious diseases, along with changing lifestyle factors (slowly increasing tobacco usage, changing diets, etc.) that are seeing a rise in non-communicable, chronic diseases. This especially includes cancer. Unlike the major infectious diseases, Malaria, HIV/AIDS and Tuberculosis, cancer has been underfunded and under-recognized as a growing problem. There is an overwhelming shortage in resources to screen, diagnose and treat cancer. There is no national cancer policy nor CT-scan in Malawi. Moreover, the total oncology specialists exist in the low single digits (for a population of 16 million)! The only major screening program is for cervical cancer, but is not the most effective. Not to mention, a lack of awareness prevents patients from seeking care in a timely manner, which is essential for cancer treatment. However, even if diagnosed early, there is essentially no radiation therapy and very limited chemotherapy. In addition, there is only one integrated cancer center in Malawi with exorbitant wait-lists. One’s best bet would be to fly to South Africa; however, the ticket is far out of reach for the vast majority of Malawians and government sponsorship is also not dependable. Side note: Many of these cancers could be prevented or delayed with greater emphasis on prevention (e.g. the leading cancer for males is Kaposi’s sarcoma, which afflicts immunocompromised patients with HIV/AIDS and cervical cancer for females, which can be decreased with HPV, Human papillomavirus, vaccination). What I’m getting at with this rather long description of cancer care in Malawi is that when a patient comes with cancer the only option for a physician is morphine and bisacodyl, palliative care of a terminal sickness. Whereas in the States, care is coordinated with surgery, radiation, chemotherapy and pain relief. It isn’t until all the resources have been exhausted, that pure end-of-life care is emphasized. This is underscored by the fact that about a quarter of Medicare’s budget is spent on those individuals in their last year of life. Thus, the role of palliative care in both countries holds very different domains. In the US, it is often the very last alternative, but in Malawi, it is often the only (final) option.
Morphine Dosing System
Given the central function of pain relief in palliative care, it is critical to properly dose and administer morphine (opioid) to the patient. Currently, patients, who often come from distant villages, receive a month/two month stock supply of liquid morphine in cleaned-out pharmaceutical bottles (used to be old water bottles) along with a small plastic dosing cup. Thus, the largest venue of palliative care is the home (only 4 beds in the ward). The patient is instructed to the volume per dose and the doses per day necessary. This method, while still effective, has been shown to be inaccurate, prone to spills and reliant on patient numeracy. A group of freshman Rice students tackled this problem by devising a 30 cent solution – the morphine dosing system (pictures below).
So far we’ve gathered feedback on usability through trial/training of a single patient (picture) and found that the device was effective as well as easy-to-use after calibration (note: setting at precise dosage is conducted by health personnel). However, we realized that the system was best suited for patients with stable pain levels (constant morphine dosage), as changing the dosing levels (moving the stopping ring) would be challenging for the patient. One ancillary problem we had to face in trying to expand this system is that it relies on the presence of empty water bottles; we learned that the hospital no longer has access to such bottles. Thus, we are hoping to set up some sort of recycling system to provide for a continued flow. Currently, we’ve just been collecting the empty ones used at our guest house.
In order to expand this system from 1 to 50 patients, this upcoming week I’ll be working on creating a user-manual for the health care provider as well as translating an instruction pamphlet for the patients into Chichewa (or basically asking Alex, the palliative care nurse, for his expertise :]). I am excited about the process of patient education as we work to get this technology into the field. Moreover, I hope to gather the device’s potential as well as immediate impact regarding morphine administration. Unfortunately, time is ticking. It’s important to get this rolling as soon as possible, so that we can be there in person to address any issues that arise. Anyways, that’s it for Morphine Dosing for now. Next week, I’ll continue the focus on palliative care, but will share our work on DataPall: A Electronic Medical Record for the ward.