Emmanuel Luyirika1 and Fatia Kiyange2
1Executive Director, African Palliative Care Association, Plot 95 Dr Gibbons Road, Makindye Hill, PO BOX 72518 Kampala, Uganda
2Director of Programmes, African Palliative Care Association, Plot 95 Dr Gibbons Road, Makindye Hill, PO BOX 72518 Kampala, Uganda
Corresponding author: Emmanuel Luyirika Email: emmanuel.luyirika@africanpalliativecare.org
This special issue is a very important one for Africa because it brings out some of the key issues in palliative care for cancer in Africa. It also highlights examples of models in service delivery and policy development which some of these African countries have initiated.
Africa has a population of close to 1 billion people with the two most populous countries, Nigeria and Ethiopia, accounting for a quarter of its population. The continent is divided into Anglophone, Francophone, Lusophone (Portuguese speaking) as well as Arabic speaking countries. Several challenges face people who have cancer which include a lack of awareness and knowledge among the population, poor detection, diagnostic and treatment facilities as well as the lack of resources at family, community and national levels dedicated to cancer care in many countries.
According to the World Cancer Report [1], there were over 620,399 new cancer cases in sub-Saharan Africa whereas cancer deaths were 447,745. According to the report the five-year prevalent cancer cases were 1,316,288. Given the high disease burden with a majority of low income countries, cancer patients experience a lot of suffering.
The World Cancer Report [1] states that of the 12.7 million new cancer cases globally, 2 million (16%) were attributable to infections. These infections include Helicobacter pylori for cancer of the stomach, Hepatitis B & C, Opisthorchis viverrini and Clonorchis sinensis for Liver Cancer, Human Papilloma Virus with or without HIV for cervical, oropharyngeal and anogenital cancer, Epstein Barr Virus for Nasopharyngeal cancer, Hodgkin and non-Hodgkin’s lymphomas, Kaposi Sarcoma Herpes virus for Kaposi Sarcoma and Schistosoma Haematobium for cancer of the bladder. The infectious agents that contribute to this cancer burden are prevalent in many regions of Africa and the prevention and control of these agents is not yet very well done. The other factors in cancer aetiology such as tobacco smoking, alcohol consumption, pollution of air water and soil, occupational exposure and others are also major factors.
This means that the cancer burden in Africa, as well as the associated need for prevention, diagnosis, treatment and palliative care, is significant. Given the symptomatology of cancer at diagnosis and during treatment or even when there are no treatment options, cancer care interventions in Africa would be incomplete without the integration of palliative care.
In most of Africa provision of palliative care tends to focus not only on cancer but also on other conditions such as HIV except in cancer hospitals and institutes and associated providers where the palliative care is more restricted to cancer patients. It is estimated that less than 10% of all patients who need palliative care in Africa get it including cancer patients.
Using the 6 WHO Health Systems Building Blocks which include governance, service delivery human resources for health, access to medicines and technologies, financing and health information systems, this special issue highlights the progress and some key achievements and challenges in cancer palliative care on the African continent. One of the papers in this issue, entitled Interventions geared towards strengthening the health system of Namibia through the integration of palliative care by Rachel Freeman, Emmanuel BK Luyirika, Eve Namisango and Fatia Kiyange brings out an example of how initial steps of integration of palliative care into the health system can happen. In addition, Zipporah Ali from Kenya in her paper Kenya Hospices and Palliative Care association: integrating palliative care in public hospitals in Kenya shares the lessons from Kenya.
As regards governance, seven African countries have developed national overarching/standalone palliative care policies and these are Rwanda, Swaziland, Mozambique, Zimbabwe, Malawi, Tanzania and Uganda. Botswana is also in the advanced stages of developing its national palliative care policy.
In addition Kenya and Zimbabwe have included palliative care in their national cancer control plans as part of the continuum of care for cancer patients. A number of countries such as Uganda, Botswana, Kenya and others have also included palliative care in their national health sector policies and strategies such as other non-communicable diseases and HIV.
In addition, a number of African countries such as Uganda, Botswana, Zimbabwe, Namibia, Rwanda and others have put in place national multi-stakeholder palliative care working group or country teams that support the ministries of health to ensure better access to palliative care.
In May 2016 the Ugandan parliament passed the Uganda Cancer Institute Bill into an Act which empowers the Uganda Cancer Institute with an autonomous status and therefore the powers to access more resources to improve the provision of cancer services in the country. This also includes widening the services to include development of cancer training, provision of palliative care services and opening up to other health workers from within the Eastern Africa region. In this special issue a paper on Best practices in developing a national palliative care policy in resource limited settings: Lessons from five African countries by Emmanuel BK Luyirika , Eve Namisango, Eunice Garanganga, Lidia Monjane, Ntombi Ginindza, Gugulethu Madonsela and Fatia Kiyange is also included.
The key challenge here is that many African countries have either not developed national palliative care policies or have palliative care missing in the other national documents and policies related to cancer care. It is important that the countries that are yet to develop or revise their national control plans ensure that they include palliative care as a key component.
Human resources development is key in cancer care. Development of oncology and palliative care as disciplines and deployment of multidisciplinary teams for cancer care is still lagging behind in many countries in Africa. In many African countries the training of palliative care as a discipline is still not happening. As far as training health workers as palliative care specialists is concerned, the countries where this is happening are Uganda [2], South Africa, Tanzania and some developments are underway in Malawi. In addition the only paediatric palliative care diploma on the continent is in Mildmay, Uganda. Integration of palliative care into pre-service training for various health worker disciplines has happened in the countries above as well as Namibia. Progress on inclusion of palliative care in pre-service training for health workers and allied disciplines, in-service training and recognising the palliative care speciality as well as rightly deploying those trained needs to happen in countries such as Botswana, Kenya, Tanzania, Uganda, Malawi, Zambia and Namibia, which have integrated palliative care into training to some degree in the training for various health cadres. This will give an opportunity to cancer patients to interact with health workers who have been trained in palliative care as a service.
According to WHO [3], a comprehensive service delivery system needs to include preventative, curative, palliative and rehabilitative services and health promotion activities. In addition these services must be accessible and well-coordinated, of good quality, covering all people for a defined population with continuity of care and patient centredness. For many cancer patients this is still a pipe dream and their experiences of cancer care are still very bad.
In order for curative services for cancer to be effected, early diagnosis and initiation of treatment modalities is key. According to Donkor et al [4] over 50% of patients with breast cancer in Africa present late and report to the hospital with advanced stage III and IV disease, a major reason for the poor survival rate. Apart from improving this figure the whole continuum of the cancer response including palliative care needs to be improved.
Irrespective of the models of cancer service delivery that are developed in each country, the ability for patients to access and utilise the services in time is important and this calls for investment in awareness and actual service implementation.
In relation to models of palliative care delivery, several countries have various service delivery models which enable the delivery of the service. When it comes to cancer care most of the care is provided at a specialist cancer unit such as the Ocean Road Cancer Institute in Tanzania, Uganda Cancer Institute in Uganda or the Cancer Unit at Princess Marina Hospital in Botswana. These cancer units then link up with mainly NGOs and CSOs that offer palliative care support within the community.
According to Downing et al [5] there are three models of palliative care service delivery in Kenya and Malawi, namely: the specialist, district hospital level and community level models. However, in some countries there is a mixture of all these models.
All countries need to develop cancer care models that are accessible, affordable and comprehensive, taking into consideration the available resources and their populations. Palliative care should never be delinked from cancer care. There are several aspects and models of service delivery and a paper from Kenya entitled Integration of legal aspects and human rights approach in palliative care delivery—The Nyeri hospice model by David Musyoki, Sarafina Gichohi, Johnson Ritho and Zipporah Ali gives some good examples. In addition, a paper from Island Hospice in Zimbabwe entitled The Island Hospice model of palliative care by Thembelihle Khumalo and Valerie Maarsdop gives an example of how service delivery happens in Zimbabwe.
The World Health Organisation has a list of essential medicines for palliative care. The biggest challenge in most African countries is access to opioids which are the mainstay of the management of chronic cancer pain. This is because these are controlled medicines governed by an international convention. This also means that prescribers of these medicines are mainly doctors. In countries where you have a very poor doctor-patient ratio, many patients do not have access to these medicines once they step out of big cancer centres. The WHA Palliative care Resolution of 2014 [6] calls for member states to ensure that national legislations and policies are reviewed to ensure the availability of these medicines. In some countries such as Uganda, Malawi, Kenya, Swaziland and Rwanda morphine powder is being reconstituted into morphine liquid for better access to oral morphine.
For cancer patients some other modalities such as radiotherapy are also very useful in palliation but access is curtailed by the unavailability of this service in many countries on the continent. Palliative care financing is largely funded through NGOs and other donor arrangements while African governments are still committing very minimal resources to it as a service. Moves need to be made to include palliative care in national health insurance schemes where they exist and into medical aid schemes as well as in other national health care arrangements.
The health information systems in any given country should be able to capture the information related to cancer care as well as palliative care. In a number of African countries comprehensive cancer registries are non-existent and where they exist they do not cover the entire population. In addition development of palliative care indicators has lagged in many countries. In Uganda they have been able to include palliative care indicators in the HMIS especially focusing on opioid use.
Among the crosscutting issues that affect the systems to deliver palliative care include awareness of palliative care for cancer at patient and family, community, health worker, education institution and policy maker levels. Other crosscutting issues include progress on palliative care research, the catalytic nature of the NGO/Government partnerships in palliative care initiatives as well as the links between cancer care and other infectious and non-infectious diseases.
As African cancer patients face the deficiencies of their national health systems in addressing the challenges of cancer care including palliative care, continued advocacy, sharing of best practices, producing relevant research findings and engagement governments across the region for inclusion into national budgets to complement donor efforts will change that situation for the better.
References
[1] Stewart BW and Wild CP (eds) (2014) World Cancer Report International Agency for Research on Cancer, World Health Organisation
[2] Government vows to scale palliative care training (2016) The Monitor Newspaper 23rd May
[3] WHO (2010) Monitoring the Building Blocks of Health Systems. A Handbook of Indicators and Their Measurement Strategies. (Geneva, Switzerland: WHO Document Production Services)
[4] Donkor A , Lathlean J ,Wiafe S, Vanderpuye V ,Fenlon D, Yarney J, Opoku SY, Antwi W and Kyei KA (2015) Factors Contributing to Late Presentation of Breast Cancer in Africa: A Systematic Literature Review Archives of Medicine 8 2:2
[5] Downing J, Grant L, Leng M and Namukwaya E (2015) Understanding Models of Palliative Care Delivery in Sub-Saharan Africa: Learning From Programs in Kenya and Malawi J Pain Symptom Manage. 50 (3) 362-70 doi: 10.1016/j.jpainsymman.2015.03.017
[6] WHO (2014) Strengthening of palliative care as a component of comprehensive care throughout the life course
http://apps.who.int/medicinedocs/documents/s21454en/s21454en.pdf
