Cancer and palliative care in Africa.

Abstract

Cancer is a significant emerging public health concern in Sub-Saharan Africa (SSA). In 2012, there were 645 000 new cases of cancer on the subcontinent with nearly half a million deaths (Globocan, 2012). In the next 10 years, more than 20 million people worldwide will be diagnosed with cancer annually. The burden of cancer in SSA is also expected to escalate as 70% of global cancer deaths occur in middle- and low-income countries (Stewart & Wild, 2014). The predominant focus during the last 30 years on infectious diseases in SSA, and in particular HIV and AIDS, has led to the misconception that cancer is not a major problem for the region. However, two things are happening. As infectious disease control measures and treatment have improved survival into adulthood, more people are now living longer to accumulate exposure to risk factors commonly associated with cancer (Dalal et al., 2011). Improvements and changes in economies and the move towards increasingly urbanisation have seen a major increase in non-communicable disease (NCDs) risk factors. The adoption of unhealthy diets, unsafe use of alcohol and tobacco smoking coupled with decreased physical activity are spiralling the epidemic of NCDs (WHO, 2005). Although infectious diseases are still the leading causes of death in SSA, the emergence of NCDs notably cancer presents a significant challenge for health systems. In this region, health systems are mainly orientated towards care for acute illness and maternal and child health. This contrasts with the needs of chronic diseases which require complex interventions to be sustained throughout the continuum of care (Samb et al., 2010). Where most people with cancer present to the health services with incurable disease, and where disease-modifying treatment is not accessible to most patients, palliative care offers a realistic public health approach to cancer care in this setting (World Health Organisation, 2002). While affirming life and considering death as part of a normal process, palliative care aims to improve the quality of life of patients and families facing life-threatening illness through the early identification, assessment and treatment of pain and other physical, psychosocial and spiritual problems (World Health Organisation, 2004). Across many developing countries and particularly in SSA countries, two forms of cancer predominate: (1) those associated with poverty and infectious diseases such as cervical cancer (Adewole, Benedet, Crain, & Follen, 2005) and (2) those linked to increasing wealth and unhealthy lifestyles such as lung cancer (Jemal et al., 2011). Regardless of the form of cancer, most patients present late when the disease is in its advanced stages and when anti-cancer therapy may not offer additional therapeutic benefit. In many parts of SSA, access to cancer screening and essential treatment services is poor. The region has the lowest global coverage of radiotherapy services with two thirds of its 277 radiotherapy machines located in only two countries: South Africa and Egypt (Abdel-Wahab et al., 2013). Similarly, access to chemotherapy is limited with only 5% patients receiving treatment (Wairagala, 2010). Health systems in SSA are challenged by this emerging burden of cancer. Fragile systems overburdened by infectious diseases, understaffing of health workers, inadequate diagnostic facilities and few facilities to offer specialised care impact the quality of care patients receive (Samb et al., 2010). Several qualitative studies exploring the experience of living with incurable disease including cancer in SSA reveal that patients suffer from significant multidimensional distress. In Kenya, Grant, Murray, Grant, and Brown (2003) found that patients suffer with unrelieved pain which becomes increasingly intolerable as the disease advances and as patients approach their end of life. Most patients live restricted lives as their physical symptoms deteriorate and as negative feelings of hopelessness and despair dominate their lives. Although religious beliefs may offer some comfort, patients' thoughts are overwhelmed by concerns for how their families will cope (Murray, Grant, Grant, & Kendall, 2003). As the illness progresses, health care costs spiral. Patients are unable to access their treatment and transportation costs become an additional financial burden. Increasing health care costs may lead families into poverty and strain much needed relationships (Murray et al., 2003; Ngutu & Nyamongo, 2015; World Health Organisation, 2005). Although families and communities are responsible for providing most care in SSA (de-Graft Aikins et al., 2010), urbanisation and migration threaten the breakdown of extended families and present new challenges for providing care to those who are chronically ill (Vento, 2013). The overwhelming unmet need for people in SSA is support for symptom control, especially pain control. This contrast greatly with patients in many economically developed countries where psychological and existential distress tend to predominate (Murray et al., 2003). Given the emerging burden of cancer in SSA and the challenges of providing essential care, the WHO public health strategy for palliative care offers an effective strategy for improving patients' quality of life by promoting equitable, accessible and cost-effective holistic care (Stjernsward, Foley, & Ferris, 2007). This approach aims to integrate palliative care by (1) developing national policies which prioritise the provision of palliative care; (2) ensuring adequate drug supply, distribution and prescription; (3) educating health care workers and the public to increase awareness, knowledge and skills of palliative care; and (4) implementing palliative care services in all levels of society with support from communities. Integration should be mindful of a country's health system and social-cultural context (Figure 1). Significant progress has been made to integrate palliative care into country health systems. In August 2016, Ministers of Health from more than 26 African countries adopted the Kampala declaration and committed to providing leadership in implementing the 2014 World Health Assembly resolution on palliative care (ehopsice, 2016). This resolution supports the integration of palliative care to offer patient-centred services aimed at improving quality of life and ensuring dignified care for those with life-threatening illness such as cancer (World Health Assembly, 2014). Thirteen countries now include palliative care as part of their national cancer control plans (International Cancer Control Partnership, 2016) and six countries: Malawi, Mozambique, Rwanda, Swaziland, Tanzania and Zimbabwe have standalone palliative care policies (Harding, Luyirika, & Sleeman, 2016). According to Human Rights Watch report on the global state of pain, SSA has the lowest global consumption of opioid analgesics (Human Rights Watch, 2011). Morphine consumption stands at 0.391 mg per capita far below the world average of 6.24 mg per capita. Other opioid analgesics such as oxycodone, fentanyl and methadone are unavailable or also in short supply (Pain and Policy Studies Group, 2014). Challenges to morphine availability include poor drug distribution systems, cost of morphine and health professionals fear of legal repercussions for prescribing morphine (Human Rights Watch, 2011). Despite these challenges, there are notable examples of countries making great strides to improve access to morphine. For instance, in 2004, the Ugandan government passed an amendment allowing nurses and clinical officers who have received training in palliative care to legally prescribe morphine. This has improved access to pain relief especially for patients living in rural communities (Jagwe & Merriman, 2007). Morphine is now on the Ugandan essential medicines list and is available to all patients at no cost. A dedicated country team also works to ensure consistent supply of morphine to all districts in the country. Furthermore, the Tropical Health Education Trust's (THET) project to support the integration of palliative care in four African countries has improved access to and consumption of morphine in 12 African hospitals. (http://www.ed.ac.uk/files/atoms/files/thet_ipcp_evaluation_report.pdf). This project has also improved delivery of palliative care services through advocacy, training and building local and international partnerships (Box 1). Education and training programmes are essential pillars for palliative care development in SSA. The Institute of Hospice and Palliative Care in Africa (an education unit of Hospice Africa Uganda) together with Makerere University offers diploma and bachelor degrees in palliative care and plans are underway for master's courses in palliative care (Hospice Africa Uganda, 2016). Palliative care is now included in undergraduate nursing and medical curricula in Botswana, Kenya, Malawi, South Africa, Uganda and Zambia. The Palliative Care Curriculum Toolkit developed by University of Makerere provides a resource for integrated teaching (http://www.ed.ac.uk/files/atoms/files/final_curriculum_toolkit_-_oct_2016.pdf). The African Palliative Care Association, with partners, has developed several manuals and guidelines to support the provision of palliative care in hospitals and in the community (https://www.africanpalliativecare.org/resources-centre/). As of 2010, 28 of 57 African countries were delivering palliative care (Wright, Wood, Lynch, & Clark, 2008), and by 2014, six countries namely Kenya, Malawi, Tanzania, Zambia, Zimbabwe and Uganda had integrated palliative care into country health systems (World Palliative Care Alliance, 2014). The Africa Palliative Care Association Palliative Outcome Scale (APCA POS) is now widely used for assessing patients' needs and evaluating the effectiveness and quality of palliative care (Harding et al., 2010). More recently, a link nurse programme at Mulago Hospital in Uganda has shown to be successful in improving the provision of palliative care services through the training and mentoring of nurses (Downing et al., 2016) and has been adapted in several hospitals in Africa. Through initiatives of APCA and country-level palliative care associations, palliative care services in SSA are expanding (Ali, 2016; Mwangi-Powell, 2012). Although significant progress has been achieved in making palliative care more accessible to patients with cancer in SSA, there is more to be done. Further efforts are required to mainstream palliative care services into country health systems. Service provision remains inconsistent and reliant on a few centres of excellence (Powell, Downing, Radbruch, Mwangi-Powell, & Harding, 2008) and a multi-sectorial collaborative approach in which palliative care is viewed as a responsibility for all and not just a select few is needed. Continuing government goodwill to support national palliative care policies and access to essential medicines will go a long way in improving access to quality care. Initiatives to support ongoing advocacy, education and training for health care staff and communities are essential for improving awareness, skills and knowledge to deliver effective palliative care (Bain, 2015; Mpanga Sebuyira, Mwangi-Powell, Pereira, & Spence, 2003). Service provision should be seamless and accessible to patients when needed. The World Health Organisation manual on planning and implementing palliative care services offers guidelines (11 Ps of integration) for successful palliative care integration starting at the district level (World Health Organisation, 2016). These should be underpinned by a strong research evidence base to guide policy and practice (Harding et al., 2013). As cancer emerges from the shadows of infectious diseases in SSA, a public health strategy to meet the holistic needs of people diagnosed with cancer can learn much from recent palliative care initiatives as most cancer patients present with advanced disease. Palliative care offers a realistic approach to equitable, accessible and cost-effective interventions. This strategy should be supported as cancer prevention and treatment initiatives continue to develop.