In May 2016, IAHPC awarded a program support grant to Dr. Emily Esmaili, a paediatrician at Duke University, US, to evaluate the multifactorial barriers to providing quality end-of-life care for children hospitalized at Bugando Medical Center, with a particular focus on recognition and treatment of pain in pediatric cancer patients.
Here, Dr. Esmaili highlights the main needs and challenges that are faced by the team in Mwanza as they strive to support children at the end of life.
At Bugando Medical Center (BMC) in Mwanza, Tanzania, as in many other resource-limited settings around the globe, providing palliative care brings unique challenges.
The main challenges at Bugando stem from a myriad of competing challenges in this low-resource, high-needs setting. Palliative care needs are often under-prioritized in the face of many competing agendas: Bugando houses a multitude of researchers and other external donors – who all vie for the attention of local staff. In addition, just as the hospital frequently runs dry of blood products, laboratory reagents, and essential antibiotics, its pain and nausea medicines are also often out of stock.
The lack of access to morphine creates a pointed challenge to delivering palliative care, especially for children at the end of life, and especially in this context where cancers often present at advanced, agonizing stages. While it is true that in Tanzania, pain itself is often unrecognized or ignored in children, it is also true that the inability to effectively treat and prevent pain perpetuates this medico-cultural habit. A national opioid policy already exists in Tanzania; however, implementation awaits critical administrative steps. Only thereafter can pain be addressed more routinely, and only then can the long-standing stigma around pain and opioids begin to dissolve.
The final, most consequential, challenge at Bugando is the need for those wishing to practice palliative care to have professional camaraderie. Several hospital staff have a keen interest and innate talent for palliative care. Yet, staff are not free to choose their positions and are frequently reshuffled between departments. Several interviewees had a true passion for palliative care but their job descriptions (such as surgical assistant or department secretary) limited their ability to actually practice their passion.
For example, one nurse would go to the oncology ward each day after her shift to care for those with disfiguring masses and festering wounds, who were left ignored by other staff. Another nurse working in a district hospital would take a dala dala (shared taxi bus) after work to visit terminally ill patients in their homes, to see that they had enough pain medicines, food, and soap. If healthcare leaders recognized the value and primacy of palliative care in settings such as Tanzania, committed staff such as these nurses would be supported rather than hindered in delivering palliative care. They could train others like themselves. They could raise awareness of sensitive issues such as pain and dying, and begin to break apart the heavy stigma surrounding these issues.
An effective, valuable palliative care program cannot be developed by scattered, individual voluntary efforts – neither from local hospital staff nor from visiting international experts. End-of-life care in the Tanzanian context is complex and largely neglected, and thus requires a unified, multifaceted approach. Perspectives from local staff and – even more importantly – from patients themselves are essential to understanding true palliative care needs and potential solutions. By listening to these local perspectives, we are eliciting homegrown, sustainable solutions; we are hearing the unique needs of children at the end of life, in this resource-limited – yet compassion-rich – setting.
Information gleaned from this research project helped to more clearly identify palliative care needs for children with cancer at BMC. Several key contacts were made in order to better meet these needs, including palliative care experts both within and outside of Africa. For example, the particular needs of Bugando were discussed with Tanzanian colleagues at the Evangelical Lutheran Church of Tanzania in Arusha as well as Ocean Road Cancer Institute (ORCI) in Dar es Salaam, both of which have thriving palliative care programs and offer training opportunities. In addition, issues with opioid availability were discussed with ORCI and the Tanzanian Palliative Care Association, and a strategy for rectifying this problem was put into place. Finally, numerous conversations were had with members of the non-profit Palliative Care Works (PCW), in order to rekindle a partnership between PCW and BMC.
I offer my sincere thanks to IAHPC for providing this opportunity. Grants such as this have tremendous utility and value.
To find out more about IAHPC’s Program Support Grants, and our Traveling Scholarships and Traveling Fellowships, please visit our website. Through these programs we support projects and individuals around the world, especially in developing countries in Africa, Eastern Europe, Asia and Latin America.