An interview with Faith Mwangi-Powell
Interview by: Alistair Craven
Dr Faith Mwangi-Powell is currently the Executive Director of the African Palliative Care Association, a post she has held since joining APCA in January 2005.
Dr Mwangi-Powell is a member of the board of directors for the International Hospice and Palliative Care Association (IHPCA) and the Foundation for Hospices in Sub-Saharan Africa (FHSSA). She is also a member of the Open Society, International Technical Advisory Committee, the Kings college International Expert Panel for the global Palliative Care Needs Assessment project and a member of the advocacy committee for the Worldwide Palliative Care Alliance (WWPCA).
Prior to APCA, Faith worked for two and half years with the Diana, Princess of Wales Memorial Fund, London, UK as an International Advocacy Officer for Palliative Care, and for three years before that as the Director for the Foundation for Women’s Health, Research and Development (FORWARD), a London based international NGO specializing in gender issues.
Faith comes from a community health background, with expertise in gender issues, sexual reproductive health, fundraising and international advocacy. She holds a master’s degree in population policies and programmes from Cardiff University and a PhD in women’s economic development and fertility-related behaviour from the Exeter University in Devon, UK.
Q: Can you tell us about your day-to-day role and the objectives of the African Palliative Care Association (APCA)?
APCA aims to contribute to the African response to progressive, life-limiting illnesses across the continent by facilitating the scale-up of affordable and culturally appropriate palliative care through a public health approach that strives to balance quality with coverage. Our broad objectives are to:
- Promote the availability of palliative care for all in need, including orphans and vulnerable children;
- Encourage governments across Africa to support affordable and appropriate palliative care, which is to be incorporated into the whole spectrum of health care services;
- Promote the availability of palliative care drugs for all in need;
- Encourage the establishment of national palliative care associations in all African countries;
- Promote palliative care training programmes suitable for African countries, and;
- Develop and promote quality standards in palliative care training and service provision for different levels of health care professionals and care providers.
In that context, my day-to-day role is to lead my team in developing APCA’s strategic direction and work programmes to scale-up palliative care across Africa.
Q: Your work has taken you to Kenya, Botswana, Zambia, Uganda and many other countries. Can you give us an overview of the biggest health challenges facing African countries today?
First, human resource deficiencies, arising from either inter- or intra-national workforce migration, or from unaddressed skills deficiencies among primarily volunteer-based services.
Second, the absence of sufficient dovetailed strategic thinking and planning to address long-term problems rather than simply offering piecemeal solutions.
Third, and related, the challenge of disease-specific donor-funding priorities, rather than a public health approach, that fails to see ill-health and its determinants holistically and that ends up denying patients access to needed services (e.g. the elderly seeking palliative care services who are not HIV positive).
Lastly, the leadership and vision necessary to not only provide clear direction on what needs to be done, but also the moral, emotional and physical strength necessary to help ensure it is done.
Q: According to The European Association for Palliative Care (EAPC), palliative care deals with “an area of modern medicine that raises many ethical dilemmas, both in respect of treatment decisions and the formidable obstacles in undertaking research.” What is your perspective on this? What are the implications for the African continent?
First, African palliative care research is highly underdeveloped. Indeed, it is an area that APCA is seeking to address in collaboration with the EAPC and other strategic partners. Some of the key obstacles to its development include: the lack of a research culture; the lack of research skills and knowledge among health care professionals (i.e. absence of a critical research mass); research isolation; patient accrual and attrition; lack of agreement on outcome measures; inadequate funding; the absence of national strategies for palliative care research, embedded into a national strategy for palliative care per se; and the absence of a strategic research vision.
“African palliative care research is highly underdeveloped.”
APCA is striving to advance the palliative care research imperative laid out by the Declaration of Venice, putting in place the infrastructure and processes necessary to realize that agenda across the continent. One of the first steps in that process will be the establishment of a prioritized regional research agenda so that the currently minimal empirical evidence that underpins African palliative care services is replaced by methodologically rigorous research findings that are ultimately aimed at improving patient outcomes, with lessons that can be replicated across the continent.
Second, the ethical dilemmas that impact upon palliative care research in Europe as well as other developed regions have equal applicability in Africa. However, whilst on the research front we are addressing similarly vulnerable individuals, around whom issues of informed consent and voluntary participation in research programmes are paramount, we are less affected currently by multiple treatment decisions given that there are, unfortunately, few treatment decisions available to the vast majority of patents. For example, having a diagnosis of cancer does not mean that you will receive the chemotherapy you may require as such services are not always available within a country. It does not mean that the ethics of providing or withholding treatment options is not something APCA considers; it is just that presently we are aiming to provide an effective treatment option per se.
Q: What are the key challenges you face in co-ordinating the promotion of palliative care within Africa?
There are several challenges, including:
- Limited workforce capacity: there are palliative care skills deficits resulting in access gaps for patients;
- Lack of policy integration: palliative care delivery is not fully integrated into the vast majority of national health programmes or policies. Consequently, it is not provided at the national level but rather limited to non-governmental organizations, faith and community-based organizations and hospices that are unable to reach all those who need care;
- Unavailability of effective pain relieving medication: the World Health Organization (WHO) recommends opioid use for moderate to severe pain. However, the availability and consumption of pain-relieving drugs is a particular challenge in Africa, in part due to the restrictive regulations for such medicines that only permit doctors to prescribe despite the fact that the overwhelming majority of patients have no access to them;
- Other challenges include: lack of rigorous research evidence indicating the benefits of palliative care; poor public awareness and understanding of the discipline; uncommitted national governments; lack of funding; entrenched attitudes within the medical profession; cultural taboos surrounding death and the disclosure of diagnosis; and the absence of a consensus that regards palliative care a basic human right.
“The World Health Organization (WHO) recommends opioid use for moderate to severe pain. However, the availability and consumption of pain-relieving drugs is a particular challenge in Africa.”
These challenges are compounded by the high disease burden, poverty and the diverse operational circumstances in which palliative care development across Africa takes place.
Q: Historically, palliative care has emerged as a leadership response from cancer control in the developed world to deal with cancer-related mortality. How are things different (or the same) in African nations?
Palliative care in Africa is also founded on the same principles of cancer care evident in developed nations. Indeed, in 1979, when the first African hospice opened its doors in Zimbabwe, the focus of care was for patients with cancer, a story that continued with other initiatives over the following years. However, the onset of HIV/AIDS in Africa, and our eventual multi-dimensional response to it, has seen not only the development of palliative care services per se, but services that are significantly donor-driven to address the needs of this client group often at the expense of other groups requiring palliative care (e.g. those diagnosed with cancer or the elderly with age-related illnesses).
Q: Are there any closing comments you wish to make?
The palliative care agenda facing APCA is daunting; however, APCA is ideally placed to undertake this challenge. Not only are we an independent African-based NGO, we are also the primary organization charged with a pan-African remit to promote palliative care across the continent. By the effective coordination of efforts to advocate for, train and educate in, establish an evidence base for, monitor and evaluate, and establish quality standards of care for providers of palliative care services, it is hoped that the unnecessary physical, emotional and spiritual suffering that Africans living with progressive, life-limiting illnesses have to date endured can at last be minimized and their quality of life improved.
The full version of this interview will be appearing in Emerald’s health care journal Leadership in Health Services later this year.