As part of our series to look at the stigma of palliative care in Africa, we interviewed Dr. Faith Mwangi-Powell, a public health expert and senior manager of complex public health programs in Africa. Dr. Mwangi Powell has more than 18 years of experience in leading, managing, implementing health programs. She worked as the founding Executive Director of the African Palliative Care Association, supporting palliative care global advocacy and services development in over 20 African countries. Currently, Dr. Mwangi-Powell is the Global Director for the Girl Generation, and GIPPEC collaborator and scientist. Dr. Mwangi-Powell is currently working with GIPPEC on the research on the quality of dying and death in East Africa.
GIPPEC: Recent research shows that there is a strong stigma attached to palliative care, with patients often linking it to death, dependency and hopelessness. Have you witnessed stigma associated with palliative care in Kenya?
Dr. Mwangi-Powell: Back in 2004 when we started developing palliative care across Africa through the African Palliative care Association, we did learn that some of the challenges that led to poor development of palliative was stigma among others. This was, however, largely linked to HIV and limited awareness of the role of palliative care and the perception that hospices was a place where dying people go. Moreover, back then, many hospices were working with cancer patients with late stage disease, and this increased the perceptions around death.
In addition, integration of HIV patients into hospice care in late 90s increased the stigma, which was then more associated with HIV infection. This stigma was across Africa not just Kenya but as the awareness of palliative care, its value and holistic nature increased, the stigma reduced. In particular, Kenya has made great progress in developing palliative care which has included great national advocacy, awareness and integration into the public health services. This has resulted in greater public awareness and demand for palliative care, and has both directly and indirectly addressed the stigma.
GIPPEC: As the founding Executive Director of the African Palliative Care Association, what has been been the most effective way to reduce the stigma in Africa?
Dr. Mwangi-Powell: Stigma is normally associated with misconceptions and fear of the unknown. The greatest way, we addressed these misconception and fear was through public awareness around what palliative care is, its holistic nature, and sharing success stories from patients testimonials. This has led to increased understanding and shifting perceptions about palliative care.
We also worked with governments to enact enabling policies so that palliative care is not seen an isolated disease-focused issue, but rather as a public health issue requiring development and support, so that all in need can access it. This political will to support palliative care which has been evident across many African countries was a critical driver for addressing stigma.
In addition, the integration of palliative care into public hospitals has also increased awareness among health providers, who are also a critical pillar for its development. We also noted that many health providers were not aware of the value of pain medication such as morphine. There was a great deal of stigma associated with the use morphine or opioids generally. Therefore, we embarked in education for health professionals around pain and symptom management. Another issue is fear of death and cultural norms associated with death sometimes, which hinders access to services which might effect the ability to have a good death.
We started a series of studies around death and dying while at APCA, including street surveys and discussions around preferred place of death. This helped to initiate a dialogue around these issues. More is still needed in this area. The quality of dying and death research that we are conducting in collaboration with GIPPEC will add great value.
GIPPEC: How do you envision the Quality of Dying and Death (QODD) research to help expand palliative care in Africa?
Dr. Mwangi-Powell: Palliative care research is still not well-developed in Africa although there have been great efforts over the last few years to increase access to evidence-based information through research. In this case, the QODD research will be a new addition to this evidence. More importantly, while there is growing information around quality of care, there is limited knowledge around the perceived quality of death and dying from the point of view of the caregivers. Therefore, the QODD will make significant contribution to an area that is currently under researched. Indeed, the hospices that have been involved in the study have expressed great interest in the findings. They recognize the great value these findings will add to their services development and expansion.
GIPPEC: What are some of the notable developments recently in integrating palliative care into the public health system? Which factor(s) do you see as the most important for expanding, improving, and integrating palliative care services (for example: advocacy, education and training, policy, public engagement, etc)?
Dr. Mwangi-Powell: The critical factors for greater integration of palliative care into the public health system are awareness and demanding creation at the service level. This can be done via advocacy or national dialogues as demand will drive service development. Education is critical because once we have demand, then we need competent health professionals who can deliver the services. We also need to ensure that we develop evidence-based programming around palliative care. This requires research to increase evidence on the value of palliative care including economic benefits through costs analysis, minimum data sets to guide governments on the minimum service level integration and needed costs. Lastly, there is also need for continued global advocacy to unlock additional finances for palliative care as this is an area which is poorly funded and has been for a long time.