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Editorial
Palliative care development in Africa: how can we provide enough quality care? R A Powell,1 F N Mwangi-Powell,2 F Kiyange,3 L Radbruch,4 R Harding5,6 Based on the WHO’s estimates for 2005, 1% of Africa’s total population,1 approximately 9.67 million people need palliative care for life-limiting illnesses throughout the continent. In sub-Saharan Africa, where infectious diseases constitute the major disease burden, AIDS is the primary determinant of this need, with HIV infections accounting for 68% (22.5 million cases) of global infections in 2009.2 In addition, non-communicable diseases (NCDs) (eg, cardiovascular diseases, trauma, cancers, cardiovascular and respiratory diseases, and diabetes) are also significant sources of morbidity and mortality. According to a recent WHO report, of the 57 million global deaths in 2008, 36 million (63%) were due to NCDs, with nearly 80% of these deaths occurring in low- and middle-income countries.3 Moreover, NCDs are projected to exceed infectious diseases by 2030.4 Despite this need, palliative care coverage on the continent is poor. For the vast majority of Africans who currently endure progressive, life-limiting illnesses, access to culturally appropriate, holistic palliative care (that includes effective pain and symptom management) is at best limited, and at worst non-existent. However, despite being a low funding priority in Africa compared with HIV and cancer treatment and prevention programmes, several milestones in palliative care have been attained since
1Department
of Learning and Research, African Palliative Care Association, Kampala, Uganda 2 African Palliative Care Association, Kampala, Uganda 3Department of Programmes, African Palliative Care Association, Kampala, Uganda 4 Department of Palliative Medicine, University of Bonn, Bonn, Germany 5Department of Palliative Care, Policy & Rehabilitation, King’s College London, London, UK 6Professor of Palliative Care, Department of Family Medicine, University of Cape Town, South Africa Correspondence to RA Powell, Department of Learning and Research, African Palliative Care Association, P.O. Box 72518, Kampala, Uganda; [email protected]
the establishment of the first hospice in Zimbabwe in 1979. These include: legislation on prescribing by nurses and clinical officers in Uganda; the adoption in 2002 of the ‘Cape Town Declaration’, which advanced that palliative care is the right of every adult and child with a life-limiting illness; the development of palliative care standards for the region; the launch of national palliative care policies in Rwanda and Swaziland; the integration of palliative care into the curricula of higher learning institutions in Botswana, Kenya, Malawi, South Africa and Uganda; and the availability of undergraduate and postgraduate palliative care or palliative medicine degrees in Uganda and South Africa. Reasons for the relatively slow, incremental advance of palliative care in Africa are not unlike those in Western Europe. 5 Some policy makers struggle to understand the public health need for palliative care within fi nite national budgets. Palliative care may be diluted, and its multi-dimensional and multi-professional aspect lost. The medical paradigm remains preoccupied with longevity and cure at the expense of the effective alleviation of pain and other symptoms. A perpetuation of the ‘silo’ specialist approach to palliative care prevents other clinical disciplines from adopting its principles, separating it from mainstream health systems. Restrictive legislation limits the prescribing of essential medicines, especially opioid analgesics.6 These problems are compounded in Africa by the absence of a rigorous evidence base to underpin the economic and outcome arguments for adoption of palliative care. Organisations to advocate for, and implement, its increased coverage are inadequately funded. Consequently, palliative care is a notable absentee in health-related millennium development goals that emphasise the quantity rather than quality of life. Against this backdrop, there is growing recognition that closing the gaps in global, regional and national patient
BMJ Supportive & Palliative Care September 2011 Vol 1 No 2
outcomes is dependent on the strengthening of health systems and increasing their capacity to deliver. The WHO has identified six fundamental building blocks of a generic health system: service delivery; the health workforce; information, medical products, vaccines and technologies; fi nancing; leadership; and governance.7 If the progress in African palliative care is to be accelerated under the umbrella of the WHO’s enhanced public health model, 8 then four key issues arise.
INADEQUATE KNOWLEDGE AND AWARENESS OF PALLIATIVE CARE A widespread lack of understanding exists among the public, health workers, other service providers, managers and policy makers. Palliative care is often perceived as an end-stage care phase synonymous with death and dying, mistakenly assumed to be the relief of physical pain only or confused with supportive home-based care. To address this problem, palliative care organisations need to develop and implement advocacy and information strategies that are tailored to attitudinal and knowledge deficits of stakeholders in Africa. These strategies should explain the benefits of palliative care as a public health approach, and also the need for specialised services and training facilities.
LACK OF INTEGRATION INTO HEALTH SYSTEMS With notable exceptions, many national health policies, essential medicines policies, education policies and health services lack a palliative care component. A review of national policies and implementation guidelines across 10 African countries found that, not only is the phrase ‘palliative care’ omitted from the majority of policies, but where it has been used, it was sometimes confused with home-based care.9 Moreover, in many African countries, access to even the most simple pain-relieving medication is legally restricted, and suboptimal treatment of pain among adults and children is common. Systemic challenges in the supply chain are compounded by the lack of public health service pharmacists and the legal restriction of prescribing powers to doctors, rather than extending the task to nurses. This severely limits the ability of local services to provide palliative care for rural patient populations and so promotes tertiary palliative care. Indeed, it has been found in Angola, the Democratic Republic 113
Downloaded from http://spcare.bmj.com/ on November 20, 2015 - Published by group.bmj.com
Editorial of Congo, Lesotho, Malawi, Namibia, Swaziland and Zambia that opioids are not discussed in any detail in national policies and strategies. With pain relief promoted as a human right, and given the adverse impact of unrelieved pain on quality of life, there is a need to address the availability and accessibility of analgesics, including opioids, together with the necessary safeguards. Additionally, despite the WHO’s recommendation that governments include palliative care in training curricula for health workers at all levels, its integration into institutions of higher learning is not widespread on the continent, resulting in a dearth of palliative care professionals. To address these problems, palliative care organisations need to work with African governments, civil society groups and institutions of higher education to ensure that palliative care is integrated into national health policies, guidelines and strategies. Palliative care should be included in health education curricula and health service training programmes to increase its accessibility throughout health services.
LACK OF EVIDENCE Despite the need for methodologically rigorous evidence in costs, outcomes, service evaluation, policy, law, education and social sciences to inform effective and appropriate care delivery, palliative care research on the continent remains embryonic. Indeed, the architectural infrastructure needed to enable the development of a robust evidence base to underpin advocacy and educational work is largely absent. While the evidence base has improved over the last decade,10 the research is uncoordinated, local rather than regional in perspective, with the fi ndings poorly disseminated over a linguistically diverse continent. As a consequence of the deficiencies, there is a need to ensure that: practices
114
and standards of care provision are underpinned by evidence rather than anecdote; lessons learnt from service successes are replicated rather than ignored; and limited donor funding is spent optimally with measurable results. One means of achieving these goals is the recent formation of the African Palliative Care Research Network, a multi-country collaborative designed to optimise palliative care and academic expertise from resource-abundant countries to resource-poor African countries in a sustainable way.
pessimism would be misplaced. While Africa is generally resource-poor in terms of funding, training and healthcare facilities, it is resource-rich, in the sense that innovation, strategic commitment, persistence and the determination of palliative care advocates are in good supply. All of these, as well as community-based resources, can be harnessed to forge the right clinical, policy, academic and economic environment for the future. Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed.
LACK OF FUNDING Changes in the international donor environment—most notably the global economic crisis—have serious implications for palliative care development across the continent. For example, the increasing trend towards fl at-lining resources that started in 2009 with the President’s Emergency Plan for AIDS Relief, shortfalls in the Global Fund budget, as well as the Department of International Development’s shift in focus from poverty reduction to maternal and child health. The planned closure of The Diana, Princess of Wales Memorial Fund, has resulted in funding constraints for all palliative care organisations and is another example of donors of palliative care falling away. A clear need has emerged for organisations to increase their focus on their fi nancial sustainability, including minimising their operational expenses; developing strategies to generate new income from non-traditional donors; fostering the development of new collaborative partnerships such as trusts, foundations, bilateral and multilateral funders; and positioning palliative care within the wider framework of the global health systems agenda. Despite these challenges, in light of our suggestions to improve access to high quality palliative care in Africa,
Accepted 8 August 2011 BMJ Supportive & Palliative Care 2011;1:113–114. doi:10.1136/bmjspcare-2011-000101
REFERENCES 1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
World Health Organization. A Community Health Approach to Palliative Care for HIV/AIDS and Cancer Patients in Sub-Saharan Africa. Geneva: World Health Organization, 2005. Joint United Nations Programme on HIV/AIDS. Report on the Global AIDS Epidemic. Geneva: UNAIDS, 2010. World Health Organization. Global Status Report on Non-Communicable Diseases, 2010. Geneva: World Health Organization, 2011. Mathers CD, Loncar D. Projections of global mortality and burden of disease from 2002 to 2030. PloS Med 2006;3:e442. Lynch T, Clark D, Centeno C, et al. Barriers to the development of palliative care in Western Europe. Palliat Med 2010;24:812–19. Harding R, Powell RA, Kiyange F, et al. Provision of pain and symptom-relieving drugs for HIV/AIDS in sub-Saharan Africa. J Pain Symptom Manage 2010;40:405–15. World Health Organization. Everybody’s Business: Strengthening Health Systems to Improve Health Outcomes – WHO’s Framework for Action. Geneva: World Health Organization, 2007. Stjernsward J, Foley KM, Ferris FD. The public health strategy for palliative care. J Pain Symptom Manage 2007;33:486–93. African Palliative Care Association. Review of National Polices and Related Documents in Ten Southern African Countries. Kampala: African Palliative Care Association, 2011. Harding R, Powell RA, Downing J, et al. Generating an African palliative care evidence base: the context, need, challenges and strategies. J Pain Symptom Manage 2008;36:304–9.
BMJ Supportive & Palliative Care September 2011 Vol 1 No 2
Downloaded from http://spcare.bmj.com/ on November 20, 2015 - Published by group.bmj.com
Palliative care development in Africa: how can we provide enough quality care? R A Powell, F N Mwangi-Powell, F Kiyange, L Radbruch and R Harding BMJ Support Palliat Care 2011 1: 113-114
doi: 10.1136/bmjspcare-2011-000101 Updated information and services can be found at: http://spcare.bmj.com/content/1/2/113
These include:
References Email alerting service
This article cites 5 articles, 1 of which you can access for free at: http://spcare.bmj.com/content/1/2/113#BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
Editorial
Palliative care development in Africa: how can we provide enough quality care? R A Powell,1 F N Mwangi-Powell,2 F Kiyange,3 L Radbruch,4 R Harding5,6 Based on the WHO’s estimates for 2005, 1% of Africa’s total population,1 approximately 9.67 million people need palliative care for life-limiting illnesses throughout the continent. In sub-Saharan Africa, where infectious diseases constitute the major disease burden, AIDS is the primary determinant of this need, with HIV infections accounting for 68% (22.5 million cases) of global infections in 2009.2 In addition, non-communicable diseases (NCDs) (eg, cardiovascular diseases, trauma, cancers, cardiovascular and respiratory diseases, and diabetes) are also significant sources of morbidity and mortality. According to a recent WHO report, of the 57 million global deaths in 2008, 36 million (63%) were due to NCDs, with nearly 80% of these deaths occurring in low- and middle-income countries.3 Moreover, NCDs are projected to exceed infectious diseases by 2030.4 Despite this need, palliative care coverage on the continent is poor. For the vast majority of Africans who currently endure progressive, life-limiting illnesses, access to culturally appropriate, holistic palliative care (that includes effective pain and symptom management) is at best limited, and at worst non-existent. However, despite being a low funding priority in Africa compared with HIV and cancer treatment and prevention programmes, several milestones in palliative care have been attained since
1Department
of Learning and Research, African Palliative Care Association, Kampala, Uganda 2 African Palliative Care Association, Kampala, Uganda 3Department of Programmes, African Palliative Care Association, Kampala, Uganda 4 Department of Palliative Medicine, University of Bonn, Bonn, Germany 5Department of Palliative Care, Policy & Rehabilitation, King’s College London, London, UK 6Professor of Palliative Care, Department of Family Medicine, University of Cape Town, South Africa Correspondence to RA Powell, Department of Learning and Research, African Palliative Care Association, P.O. Box 72518, Kampala, Uganda; [email protected]
the establishment of the first hospice in Zimbabwe in 1979. These include: legislation on prescribing by nurses and clinical officers in Uganda; the adoption in 2002 of the ‘Cape Town Declaration’, which advanced that palliative care is the right of every adult and child with a life-limiting illness; the development of palliative care standards for the region; the launch of national palliative care policies in Rwanda and Swaziland; the integration of palliative care into the curricula of higher learning institutions in Botswana, Kenya, Malawi, South Africa and Uganda; and the availability of undergraduate and postgraduate palliative care or palliative medicine degrees in Uganda and South Africa. Reasons for the relatively slow, incremental advance of palliative care in Africa are not unlike those in Western Europe. 5 Some policy makers struggle to understand the public health need for palliative care within fi nite national budgets. Palliative care may be diluted, and its multi-dimensional and multi-professional aspect lost. The medical paradigm remains preoccupied with longevity and cure at the expense of the effective alleviation of pain and other symptoms. A perpetuation of the ‘silo’ specialist approach to palliative care prevents other clinical disciplines from adopting its principles, separating it from mainstream health systems. Restrictive legislation limits the prescribing of essential medicines, especially opioid analgesics.6 These problems are compounded in Africa by the absence of a rigorous evidence base to underpin the economic and outcome arguments for adoption of palliative care. Organisations to advocate for, and implement, its increased coverage are inadequately funded. Consequently, palliative care is a notable absentee in health-related millennium development goals that emphasise the quantity rather than quality of life. Against this backdrop, there is growing recognition that closing the gaps in global, regional and national patient
BMJ Supportive & Palliative Care September 2011 Vol 1 No 2
outcomes is dependent on the strengthening of health systems and increasing their capacity to deliver. The WHO has identified six fundamental building blocks of a generic health system: service delivery; the health workforce; information, medical products, vaccines and technologies; fi nancing; leadership; and governance.7 If the progress in African palliative care is to be accelerated under the umbrella of the WHO’s enhanced public health model, 8 then four key issues arise.
INADEQUATE KNOWLEDGE AND AWARENESS OF PALLIATIVE CARE A widespread lack of understanding exists among the public, health workers, other service providers, managers and policy makers. Palliative care is often perceived as an end-stage care phase synonymous with death and dying, mistakenly assumed to be the relief of physical pain only or confused with supportive home-based care. To address this problem, palliative care organisations need to develop and implement advocacy and information strategies that are tailored to attitudinal and knowledge deficits of stakeholders in Africa. These strategies should explain the benefits of palliative care as a public health approach, and also the need for specialised services and training facilities.
LACK OF INTEGRATION INTO HEALTH SYSTEMS With notable exceptions, many national health policies, essential medicines policies, education policies and health services lack a palliative care component. A review of national policies and implementation guidelines across 10 African countries found that, not only is the phrase ‘palliative care’ omitted from the majority of policies, but where it has been used, it was sometimes confused with home-based care.9 Moreover, in many African countries, access to even the most simple pain-relieving medication is legally restricted, and suboptimal treatment of pain among adults and children is common. Systemic challenges in the supply chain are compounded by the lack of public health service pharmacists and the legal restriction of prescribing powers to doctors, rather than extending the task to nurses. This severely limits the ability of local services to provide palliative care for rural patient populations and so promotes tertiary palliative care. Indeed, it has been found in Angola, the Democratic Republic 113
Downloaded from http://spcare.bmj.com/ on November 20, 2015 - Published by group.bmj.com
Editorial of Congo, Lesotho, Malawi, Namibia, Swaziland and Zambia that opioids are not discussed in any detail in national policies and strategies. With pain relief promoted as a human right, and given the adverse impact of unrelieved pain on quality of life, there is a need to address the availability and accessibility of analgesics, including opioids, together with the necessary safeguards. Additionally, despite the WHO’s recommendation that governments include palliative care in training curricula for health workers at all levels, its integration into institutions of higher learning is not widespread on the continent, resulting in a dearth of palliative care professionals. To address these problems, palliative care organisations need to work with African governments, civil society groups and institutions of higher education to ensure that palliative care is integrated into national health policies, guidelines and strategies. Palliative care should be included in health education curricula and health service training programmes to increase its accessibility throughout health services.
LACK OF EVIDENCE Despite the need for methodologically rigorous evidence in costs, outcomes, service evaluation, policy, law, education and social sciences to inform effective and appropriate care delivery, palliative care research on the continent remains embryonic. Indeed, the architectural infrastructure needed to enable the development of a robust evidence base to underpin advocacy and educational work is largely absent. While the evidence base has improved over the last decade,10 the research is uncoordinated, local rather than regional in perspective, with the fi ndings poorly disseminated over a linguistically diverse continent. As a consequence of the deficiencies, there is a need to ensure that: practices
114
and standards of care provision are underpinned by evidence rather than anecdote; lessons learnt from service successes are replicated rather than ignored; and limited donor funding is spent optimally with measurable results. One means of achieving these goals is the recent formation of the African Palliative Care Research Network, a multi-country collaborative designed to optimise palliative care and academic expertise from resource-abundant countries to resource-poor African countries in a sustainable way.
pessimism would be misplaced. While Africa is generally resource-poor in terms of funding, training and healthcare facilities, it is resource-rich, in the sense that innovation, strategic commitment, persistence and the determination of palliative care advocates are in good supply. All of these, as well as community-based resources, can be harnessed to forge the right clinical, policy, academic and economic environment for the future. Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed.
LACK OF FUNDING Changes in the international donor environment—most notably the global economic crisis—have serious implications for palliative care development across the continent. For example, the increasing trend towards fl at-lining resources that started in 2009 with the President’s Emergency Plan for AIDS Relief, shortfalls in the Global Fund budget, as well as the Department of International Development’s shift in focus from poverty reduction to maternal and child health. The planned closure of The Diana, Princess of Wales Memorial Fund, has resulted in funding constraints for all palliative care organisations and is another example of donors of palliative care falling away. A clear need has emerged for organisations to increase their focus on their fi nancial sustainability, including minimising their operational expenses; developing strategies to generate new income from non-traditional donors; fostering the development of new collaborative partnerships such as trusts, foundations, bilateral and multilateral funders; and positioning palliative care within the wider framework of the global health systems agenda. Despite these challenges, in light of our suggestions to improve access to high quality palliative care in Africa,
Accepted 8 August 2011 BMJ Supportive & Palliative Care 2011;1:113–114. doi:10.1136/bmjspcare-2011-000101
REFERENCES 1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
World Health Organization. A Community Health Approach to Palliative Care for HIV/AIDS and Cancer Patients in Sub-Saharan Africa. Geneva: World Health Organization, 2005. Joint United Nations Programme on HIV/AIDS. Report on the Global AIDS Epidemic. Geneva: UNAIDS, 2010. World Health Organization. Global Status Report on Non-Communicable Diseases, 2010. Geneva: World Health Organization, 2011. Mathers CD, Loncar D. Projections of global mortality and burden of disease from 2002 to 2030. PloS Med 2006;3:e442. Lynch T, Clark D, Centeno C, et al. Barriers to the development of palliative care in Western Europe. Palliat Med 2010;24:812–19. Harding R, Powell RA, Kiyange F, et al. Provision of pain and symptom-relieving drugs for HIV/AIDS in sub-Saharan Africa. J Pain Symptom Manage 2010;40:405–15. World Health Organization. Everybody’s Business: Strengthening Health Systems to Improve Health Outcomes – WHO’s Framework for Action. Geneva: World Health Organization, 2007. Stjernsward J, Foley KM, Ferris FD. The public health strategy for palliative care. J Pain Symptom Manage 2007;33:486–93. African Palliative Care Association. Review of National Polices and Related Documents in Ten Southern African Countries. Kampala: African Palliative Care Association, 2011. Harding R, Powell RA, Downing J, et al. Generating an African palliative care evidence base: the context, need, challenges and strategies. J Pain Symptom Manage 2008;36:304–9.
BMJ Supportive & Palliative Care September 2011 Vol 1 No 2
Downloaded from http://spcare.bmj.com/ on November 20, 2015 - Published by group.bmj.com
Palliative care development in Africa: how can we provide enough quality care? R A Powell, F N Mwangi-Powell, F Kiyange, L Radbruch and R Harding BMJ Support Palliat Care 2011 1: 113-114
doi: 10.1136/bmjspcare-2011-000101 Updated information and services can be found at: http://spcare.bmj.com/content/1/2/113
These include:
References Email alerting service
This article cites 5 articles, 1 of which you can access for free at: http://spcare.bmj.com/content/1/2/113#BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
