The biggest challenge facing palliative care provision in Africa is funding. Palliative care in Africa has historically been funded by donors. These include trusts and foundations such as the Diana Princess of Wales Memorial Fund, the True Colours Trust, the Open Society Foundation (OSF) through the International Palliative Care Initiative (IPCI), the Open Society Institute of Eastern Africa (OSIEA) and Open Society Institute of Southern Africa (OSISA), the American Cancer Society, Livestrong Foundation, Global Partners in Care and the World Prevention Alliance (African Palliative Care Association Annual Report 2013/14).
The western governments have also funded palliative care and the United States Government through the President’s Emergency Plan for AIDS Relief in Africa (PEPFAR) gave palliative care development a very significant financial boost since 2004 though this has come to an end. Other western governments and their agencies have included the Department for International Development (DFID) of United Kingdom, the Danish International Development Agency (DANIDA) of Denmark and some European Union funding.
With the dwindling of some of these western government funds, the burden of palliative care funding is carried by the trusts and foundations as well as some of the African governments that are starting to invest some money into the discipline. The governments of Botswana, Namibia, South Africa and Malawi are covering the costs of the medications as well as Uganda which has ring-fenced the money for oral morphine so that patients whether in government or NGO facilities get it free of charge.
More needs to be done to safeguard the lives of Africans and reduce unnecessary suffering especially when faced with life threatening illnesses such as cancer, Multi-resistant drug tuberculosis, HIV and others and especially at the end of life.
Sustainability
The cost of health care is high but Palliative care in Africa presents even bigger challenges because health insurance is rare, families are often impoverished by their illness, and in many cases a breadwinner is the unfortunate victim of a life-limiting illness needing Palliative Care. Few insurance companies include Palliative care as a benefit in their packages and when pre-existing chronic illnesses are discovered by underwriters the premiums are made unaffordable. Insurance schemes providing for Palliative care have started in some African countries including Ghana, Rwanda and Mauritius- albeit slowly and with minimal packages. Patients are rarely able to pay out of their own pockets as this catastrophic expenditure bankrupts families. Palliative Care therefore remains largely funded through the generosity of donors. As this is in a setting of a global economic crunch the need for Palliative Care units, Hospices and teams to attend to cost-effective models of service delivery, obtain value for money and ensure programme sustainability has never been as critical as it is today. Some of the most cost-effective models of service delivery which consider the peculiarities in Africa are out-patient rather than in-patient services, home-based care, use of community volunteer workers to identify patients and be part of the care system, private-public partnerships and the use of innovative models like roadside palliative care clinics and day outreaches into the community and into institutions like prisons and slums.
Institutions engaging in palliative care research include academic institutions, hospital based palliative care units, hospices, APCA, National Associations with an anchor into collaborations and partnerships in institutions based in Europe, North America, and New Zealand. It is encour-aging to note that most regions in Africa are actively participating in the dissemination of best practices through publication. This evidence is informing policy (Nabudere et al, 2014). Uganda, Rwanda, Swaziland and Malawi currently have standalone evidence palliative care policies.
The evidence has also informed policy dialogues that have led to improved access to Opioids for pain management in countries like Uganda, (Merriman et al, 2010b), where trained nurses and clinical officers can now prescribe morphine and where local production has been embraced.
More countries like Rwanda are talking local production which is cheaper and reduces waiting time between medicine ordering and delivery.
There is however more need for capacity building and engagement in knowledge translation to increase use of evidence for informing policy, service development, delivery and general palliative care practice.
APCA has also established a triennial palliative care conference which is held every three years in different parts of the continent. This helps to create a forum where palliative care providers, researchers, educators, donors, governments, patients and the general public have an opportunity to meet and share best practices and research evidence. The previous conferences were held as follows, Arusha 2004, Nairobi 2007, Windhoek 2010, Johannesburg 2013 and the next one will be held in Kampala in August 2016.
As part of the palliative care conference of 2013 in Johannesburg, a minister of health palliative care session was held and this brought together delegations from 34 countries with ministers of health from Kenya, Uganda, Malawi and South Africa attending in person. The ministers’ session came out with a statement urging for integration (Jackson, 2013).
Partnerships and Coordination
The achievement of progress in palliative care implementation and training in Africa has been possible because of the north-south partnerships that exist between African ministries of health, training institutions and civil society players and their partners in Europe and North America.
South-to-South partnership have also been useful especially as regards training where other African countries have utilised facilities in Cape Town South Africa and Hospice Africa Uganda and Makerere University in Uganda to develop palliative care human resources (African Palliative Care Association Annual Report 2012/13). However African palliative care needs a greater input from African academics and the communities.
There is so much in Africa that Western countries could learn from, particularly in keeping costs down, which African teams are forced to do in order to have an affordable service.
Other key role players include the legal and human rights players in supporting the unique challenges of palliative care patients as professional councils for medical, nursing, allied health professional as well as legal practitioners in ensuring accreditation of palliative care training and recognition.
Too often oncologists view their role in cancer care as ending when cure cannot be achieved, but this approach leaves most cancer patients in resource-limited countries with no care at all.
Role of Community Volunteer Workers in African Palliative Care
In Africa there is a shortage of doctors and even nurses especially in rural areas. The need for community-based resources to complement Hospice and Palliative Care teams is therefore necessary. Community Volunteer Worker (CVW) (Jack et al, 2011) programmes have been developed by some countries (Uganda, Kenya, Malawi etc) to train lay people who are identified by their own local villages to help by providing support to including families, volunteers and others; education and training at all levels; assessing basic palliative care needs including pain medication
requirements; revision of national and local legislation and policies for controlled medicines to improve access; updating national essential med-icines lists; fostering partnerships; and implementing and monitoring palliative care actions in the included in WHO’s global action plan for the prevention and control of NCDs 2013–2020. To support comprehensive integration of palliative care, the need for evidence is critical and indeed WHO’s commitment to strengthening palliative care highlights commitment to more targeted research;
• monitoring global palliative care access and evaluating progress made in palliative care programmes
• encouraging adequate resources for palliative care programmes and research, especially in resource-limited countries
• building evidence of models of palliative care that are effective in low- and middle-income settings
• building evidence models of affordable oral morphine use in Africa without diversion or addiction
The African Palliative Care Association in partnership with various academic institutions in Northern, Western, Eastern and Southern Africa as well as Europe and North America has established the African Palliative Care Research Network (APCRN) to train palliative care researchers, nurture a research culture and developments on the continent. The APCRN also coordinates international student placement scheme to support interna-tional researchers who wish to undertake research in Africa.
Through joint effort and collaboration, evidence base for palliative care in Africa has greatly improved over time; research conducted include a clinical trial evaluating the nurse led model of palliative care for HIV patients (Lowther et al. ,2015) and another trial assessing the potential use of Amitriptyline for Analgesia in Painful HIV-Associated Sensory Neuropathy (Dinat et al, 2015). Research has also been conducted on understand-ing models of models of palliative care in Africa (Downunderstand-ing et al, 2015; Hardunderstand-ing et al, 2014), appraisal of palliative care services in Africa (Wright et al, 2006). Studies have also been conducted on needs assessments for palliative care in Africa (Jacinto et al, 2015; van Niekerk et al, 2014; Herce et al, 2014) and this will inform planning for service delivery in the region.
Other research in the region has focused on opioid and other medicine availability and general practices in Africa (Harding et al, 2014; Cherny et al, 2013; Cleary et al, 2013; Harding et al, 2010a; Merriman et al,2010a) , outcome measurement in palliative care (Siegert et al, 2014; Blum et al, 2014; Besley et al, 2014; Downing et al, 2012; Harding et al, 2010b), pain and symptom burden in malignant and non-malignant diseases (Simms et al,2011; Harding et al, 2012;, Harding et al, 2014; Namisango et al, 2015; Lazenby et al, 2016), focus on heart failure (Harding et al, 2014; Selman et al, 2015; Lokker et al, 2015 ; Kimani et al, 2016), focus on delirium in the sub-Saharan Africa (Paddick et al, 2015). There is also context specific literature on symptom burden and care practices for specific cancers (Shimakawa et al, 2015; Zeeneldin et al, 2014; Mubiligi et al, 2014; Ogundiran et al, 2013; Mwaka et al, 2013; Distelhorst et al, 2015) .
Recently research has also been conducted in other areas like telemedicine and e-learning in palliative care use of telemedicine in palliative care (Rawlinson et al, 2014; van Gurp et al, 2015), costing of palliative care services (Hongoro et al, 2011), community palliative care (Frank et al, 2015;
Murray et al, 2015), caring for care givers (Repar et al, 2014), place of death and end of life care preference (Downing et al, 2014; Powell et al, 2014) , education in palliative care (Rawlinson et al, 2014) and views of health professionals about palliative care (Lofandjola et al, 2014).
The evidence base for palliative care for children remains limited but several studies have been conducted documenting the experiences in developing children’s palliative care (Downing et al, 2013), mapping priorities for research in children’s palliative care (Downing et al, 2015b) children’s palliative care needs assessment (Connor et al, 2014) status of paediatric palliative care in Africa (Harding et al, 2014), malignancies in children (Davidson et al, 2014; Weaver et al, 2015), community based palliative care services for children living with cancer (Tamannai et al, 2015) and recent development of an outcome measure for children.
The State of Oncology in Africa – 2015 Chapter 8 – Africa: Palliative Care
Role and Influence of Religions and Spirituality
Religion and spirituality are part and parcel of the fabric of the people of Africa and in offering holistic care health workers must recognise this and address issues of patient’s spirituality. Everyone has a spiritual dimension to his/her being, and spirituality is about what gives us meaning in our lives, our beliefs and values, and our ultimate concerns particularly when patients are facing life-limiting illnesses like cancer. At the end of life spiritual issues become increasingly important and it is often at this stage that patients can often experience significant spiritual growth and gain meaningful fulfilment.
Although spirituality is important in care of cancer and other palliative care patients talking about spirituality is a very personal matter, and good listening and communication skills and a trusting relationship needs to be developed in order to bring the discussion to a greater depth.
A patient’s experience of physical pain may be worsened by spiritual distress, and sometimes spiritual pain is diagnosed after the failure of the patient’s physical pain to respond to increased doses of analgesia.
It is important that clinicians are not judgemental, do not try to convert patients to another faith but recognise that it is a time to listen to the person facing death, and respect his or her wishes and needs. Some oncologists and health workers find caring for people with cancer in the end stage of life challenging, and all too often when faced with difficult questions or situations there is a tendency to give false reassurances to try to make the patient feel better. It is also important to remember that in Africa some religions and faiths may interfere with the continuation and completion of cancer treatment and palliative care, for example when miraculous cure is sought by patients and their families.
Each professional has a role to play in dealing with spiritual issues and an interdiscipli-nary model of oncologic and palliative care that includes spiritual support is intended to ensure that patients receive the best care. Referral to a religious leader or pastoral worker should always be considered for patients, but in our experience most patients have devel-oped their own way of supporting their relationship with their God and are grateful if the health care professional shows empathy and understanding of this. Therefore a section on spirituality is included in patient assessments in palliative care in Africa.
Legal and Human rights approaches to palliative care
Legal, ethical and Human Rights issues are now a recognised field within palliative care and countries such as Kenya, Uganda, and Malawi have developed guidelines on this topic for health care workers as well as families.
Leveraging the policies and system for cancer, HIV, tuberculosis, for pallia-tive care delivery
Because of the decline in funds for palliative care over time and given the burden, all funds for the various disease programmes such as tuberculosis, HIV and cancer ought to be used to offer palliative care as part of an integrated approach to suffering.
Figure 14: Therapies for the desperate - Nanyonga’s “garden soil cure”
patients in their own homes. The CVWs are the Palliative Care team’s “eyes and ears” in the community whose hands bring basic nursing care into the home. CVWs assist collect patient medications from the health centre/ hospital, and promote adherence to treatments. There has been much value shown by these programmes with CVWs acting as a ‘bridge to the hospice’ in identifying patients who would otherwise not have received any care (Jack et al, 2011).
Traditional Healers and Remedies in Palliative Care
Traditional healers have been part of the fabric of care in Africa since time immemorial and many molecules purified in the laboratory into tablets have their origins from plants and other natural materials found in the forests. The biggest challenge with traditional remedies is that some have not been well researched and without standardisation it is difficult to specify doses and combine treatments for the concern of side effects. It is nonetheless important to recognise that many patients will concurrently use traditional remedies during their Palliative care and the clinician will need to watch for drug interactions and side effects. Palliative Care however recognises that herbal remedies may represent valid local alter-natives to the scarce and unaffordable modern medicines for the treatment of pain and symptoms. In some countries like Uganda and Malawi Palliative Care practitioners are working with traditional healers to identify useful remedies and there are training courses in PC for traditional healers who in turn invite the professional interdisciplinary teams to learn about herbal remedies in and from their forests. There is increasing interest in traditional medicine becoming an integral part of health policy through collaboration or integration. With research more remedies, like frangipani sap for the treatment of pain of herpes zoster vesicles as well as post herpetic pain, will become regularly used treatments.
Sap from the frangipani tree when topically painted on herpetic vesicles, and post herpetic area of pain, brings pain relief.
Figure 13: Pain relief for herpes can be obtained from the sap of the frangipani tree Complementary Therapies in Africa
Unless overtly harmful it is important that anything which improves the quality of life of the patient should be encouraged. The psychological support which many complementary therapies offer must be appreciated. Complementary therapies used together with conventional treat-ments offer a more holistic approach to care and promote pain relief as a relaxed patient has a higher pain threshold. Acupuncture, aromatherapy, reflexology, massages, and distraction techniques are being increasingly used including in oncology units when added on therapies to benefit
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