An interview with Faith Mwangi-Powell, Executive Director, African Palliative Care Association

Citation

by Alistair Craven, I. (2008), "An interview with Faith Mwangi-Powell, Executive Director, African Palliative Care Association", Leadership in Health Services, Vol. 21 No. 4. https://doi.org/10.1108/lhs.2008.21121daf.001

An interview with Faith Mwangi-Powell, Executive Director, African Palliative Care Association

Article Type: Talking heads From: Leadership in Health Services, Volume 21, Issue 4

Interview by Alistair Craven

Dr Faith Mwangi-Powell is currently the Director of the African Palliative Care Association.She has extensive experience in sexual and reproductive health, HIV/AIDS and palliative care and her past and current work activities include working in advocacy issues, and coordinating funding and support to programs in Asia and Africa for the development of palliative care in the continent.

She earned her doctoral degree at the University of Exeter on the Impact of economic development upon women’s status and fertility-related behaviour in rural Kenya. In addition, she holds a Certificate in health and social services management from Sheffield Hallam University and a Masters in Economic Population Policies and Programmes from the University of Wales, in Cardiff.

AC - Can you tell us about your day-to-day role and the objectives of the African Palliative Care Association (APCA)?

FM-P

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.

AC - 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?

FM-P

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.

AC - 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?

FM-P

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.

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.

AC - What are the key challenges you face in co-ordinating the promotion of palliative care within Africa?

FM-P

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.

These challenges are compounded by the high disease burden, poverty and the diverse operational circumstances in which palliative care development across Africa takes place.

AC - What are the key elements of contemporary palliative care as they are being implemented in African nations under the leadership of APCA?

FM-P

APCA subscribes to the WHO definition of palliative care for adults and children, which states that palliative care is:

… an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

APCA sees palliative care as a philosophy of holistic care, and a human right, that is applicable from a clinical diagnosis (or before hand as appropriate) until death for the patient, and then into bereavement care for their family and carers. That is to say multi-disciplinary in nature (and includes traditional healers), which can be provided in a range of care settings – including home- and facility-based care, inpatient and day care – and which should ideally be integrated into existing health systems. While APCA recognizes that the concept of palliative care has its roots in the UK model, we believe that this must be adapted to African traditions, beliefs and cultures, all of which vary from community-to-community and from country-to-country.

AC - What are some of the partnerships and innovations that are contributing to the early success of improving palliative care service delivery in Africa?

FM-P

APCA’s partnerships are founded on matching needs and expertise to coordinate effective palliative care scale-up. Presently APCA has many partnerships with associations or organizations both regionally and internationally, which are classified into three tiers of functionality:

1. 1.

   International level: we partner with key donors, including the Diana, Princess of Wales Memorial Fund, the Open Society Institute, the Elton John AIDS Foundation, the American International Health Alliance, the Foundation for Hospices in Sub-Saharan Africa (FHSSA), the United States Government through the President’s Emergency Fund for AIDS Relief (PEPFAR), and Direct Relief International. These partnerships have been central to palliative care scale-up since the funders have provided much needed financial support and technical assistance.

2. 2.

   One to one partnerships: our partnership with FHSSA provides a platform whereby hospices in Africa are partnered with American hospices and a mutually beneficial relationship is formed between the two which, through moral, technical and financial support, can help ensure that improved care is provided to patients.

3. 3.

   National level: we partner with national associations in Kenya, Tanzania, Malawi, Zambia, Uganda and the country Ministries of Health. These partnerships contribute to local programme ownership and support, which is vital for their success and sustainability. Some of the most innovative partnerships have, however, been with the country drug availability teams. In 2006 APCA developed a project addressing access to palliative care drugs across the continent. In partnership with international funders, as well as the Pain and Policy Study Group based at the University of Wisconsin, USA, APCA identified country teams comprised of persons with the ability and willingness to advocate to government policy makers and administrators to design, adopt, implement or change policies and practices regarding the availability and accessibility of opioids in their respective countries. So far APCA has supported 18 African countries through this approach, and many of the country work plans are being implemented. Indeed, as a direct result of this work, morphine is increasingly, if slowly, becoming available across Africa.

AC - 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?

FM-P

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).

AC - What are some of the leadership contributions that palliative care as an area of health and human service can contribute to strengthening population health and the economy within the African continent?

FM-P

One of the key contributions that palliative care can provide is the strengthening of health care systems. A well-functioning health system ensures equitable access to essential medical products, vaccines and technologies of scientifically assured quality, safety, efficacy and cost-effectiveness. Based on work undertaken with the World Palliative Care Alliance, where I co-chair the Policy Working Group, we have identified palliative care supporting five key areas of health systems:

1. 1.

   Health service provision – palliative care services are provided through innovative patient-focused models whereby care is provided in a cost-effective way, when and where the patient needs (e.g. home-based care), thus reducing the health services burden.

2. 2.

   Health workforce – development of skilled palliative care manpower is commonly achieved though a multi-disciplinary approach whereby education and training is provided across all levels of a health system, from community volunteers to health professionals. This approach to skills development ensures that a comprehensive team of skilled providers are developed who are able to provide care at different levels, meaning that health provision shifts from being the health professionals’ responsibility to that of the community, and thereby provides support for health professionals at a primary, secondary or tertiary level.

3. 3.

   Task shifting – whereby through innovative leadership provided by palliative care, health professionals are increasingly becoming empowered to provide services they would otherwise not routinely supply. For example, in Uganda nurses have been trained and empowered to prescribe opioids and in South Africa the support and training of community health workers in palliative care has often facilitated breakthroughs in how health workers deliver services.

4. 4.

   Drug supply chain – distribution of morphine in Uganda has also established a drug supply chain to patients in rural areas of the country, a mechanism that can be adopted to support a wider drug distribution system in rural Africa.

5. 5.

   Economics – palliative care has been found to enable people who would otherwise be bedridden, in pain and potentially with other distressing symptoms, become pain-free with their symptoms controlled, enabling them to return to income-generating projects or paid employment and thus reversing household poverty.

AC - In an article from the Journal of Palliative Medicine you note how over 28.5 million people in sub-Saharan Africa suffer from HIV/AIDS and the majority of sufferers have no access to palliative care services. How can Africa realistically tackle this appalling situation?

FM-P

The overwhelming burden of disease on the continent is a key challenge to delivering palliative care. HIV/AIDS contributes a significant proportion to this burden; but there are others without such a diagnosis also requiring palliative care. So the disease burden is not just equated to HIV/AIDS; it is greater than that. In addressing the relative lack of palliative care services to resolve this situation, APCA campaigns for its better integration in to national HIV/AIDS policies and programmes and the wider national health care strategies. Additionally, palliative care needs to be included in the professional training of health cadres at all levels, thereby avoiding the provision of palliative care in isolated islands of excellence by expanding the skills base as national governments start assuming responsibility for advancing the agenda and dedicating much-needed resources. In our work with Ministries of Health in Namibia, Swaziland and Tanzania, we have seen that palliative care can be integrated into mainstream health provision. Indeed, in Uganda palliative care is part of the national health strategy and nurses have also been given the mandate to prescribe morphine. If this government involvement is replicated across Africa, then palliative care will be more accessible to those who desperately need it.

AC - Two WHO publications – Palliative Care: The Solid Facts and Better Palliative Care for Older People – draw on European data which illustrate that many people die in unnecessary pain and suffering because health systems lack the skills and services to provide care towards the end of life. What do you think can be done to better promote awareness and acceptance of palliative care methods? Is this statement also reflective of the current African context?

FM-P

As a general rule, problems evident in developed countries’ health systems are simply magnified in the African setting. This equally applies to palliative care as it does to other health disciplines. As for the unmet palliative care needs of the elderly, our recent research findings from a Help the Aged-funded project in Uganda and Kenya highlighted their comparative neglect, in part caused by the donor-determined clinical priorities (primarily HIV/AIDS) that see age-related, life-limiting illnesses as low priority. This is a status given to the aged in Africa generally, where those of reproductive age are accorded greater financial interest.

AC - You have stated that cancer has remained comparatively neglected in Africa, yet 70 per cent of people with cancer live in the economically developing world. What has caused this neglect, and what do you think can be done about it?

FM-P

The comparable neglect of cancer, notwithstanding such issues as deficient public awareness of predisposing factors etc., is simple: funding. HIV/AIDS has attracted a substantial amount of donor money, especially from PEPFAR. One of the critical consequences of this current funding compartmentalization in Africa, however, is the neglect of palliative care for cancer which remains in the shadow of HIV/AIDS despite the burgeoning nature of the epidemic.

In Africa, disease-modifying cancer treatments and basic symptom control measures are largely absent. Even when analgesia is available, patients with cancer may still experience severe and inadequately managed pain, as health professionals under-prescribe strong analgesics, fearing drug-dependency. For humane cancer care in Africa, an analgesic “ladder” and other symptom control medications must be available and affordable.

However, individual sub-Saharan countries cannot address the challenges of cancer in isolation. A new cooperative approach and research base is being advocated for the prevention, treatment and palliation of cancer to bridge the gap between developed and developing nations. Lastly, there is a need to move away from disease-determined prioritized funding to a public health service approach that sees health issues in a holistic context, recognizing that many of these issues cover multiple ministries (e.g. development, poverty, education, etc) and have to be addressed accordingly.

AC - What are key leadership imperatives for palliative care to make an enduring part of improving the health of people and communities in Africa? Where does that leadership need to happen?

FM-P

It is about providing the strategic oversight and leadership that will influence and direct policy on a regional basis to address the health challenges listed above. This is the big picture thinking that gives direction to, but does not compromise, local priorities and agendas for the development of palliative care services, ensuring that the quality of service provision is seen as of comparable importance to the extension of service coverage.

AC - Are there any closing comments you wish to make?

FM-P

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.